With a heavy heart we share our loss, wish a peaceful transition and reflective thoughts to our
dearly departed HOPEster…..Jesse Jhon Andrews.
Jesse Jhon Andrews lived a life that was complex, creative, and unforgettable. His story is not easily summarized, because he was not a man of simple lines. Jesse felt deeply, created passionately, and saw the world through a lens uniquely his own. His music, writings, and the lasting imprint he left on those who knew him continue to speak even in his absence.
We invite you to visit Jesse’s Memory Page, where his life, his work, and the stories shared by those who loved him are preserved. This page honors not just his struggles, but the incredible brilliance, depth, and one-of-a-kind spirit that defined him. This page serves as a place where his story can continue, where his voice can still be heard through the work he left behind, and where those who knew him, or wish they had, can connect with the legacy of a life that was lived fiercely and uniquely.
Explore Jesse’s Memory Page by clicking the word below that says “HERE”:
Today marks a milestone in the life of myself and my family. Today is the 11th-year survivor-versary of the wreck that, in part, changed the course of all of our lives.
While it remains factual that it was myself and our youngest son involved in the actual wreck itself all those years ago, the family as a whole would become and remain affected as a result of its aftermath – for years to come. The rehabilitation journey has not been for the faint of heart and continues…albeit in different ways now than when it all began.
There have been many things involved that have gotten me to this point in my life – which I guess I would call the “survivors plateau”. Many things that cause me to reflect a bit deeper each year at this time.
On the positive (effective) side, I could speak about the great care of many healthcare professionals; the unwavering support, love, struggles, and sacrifice of time and energy of my family; how clinging on to HOPE, my deep-seated faith, and a healthy dose of daily gratitude has helped us traverse this seemingly insurmountable experience. I could speak to many details, many therapies, many opportunities for growth, successes, and immense blessings that have come into our lives….with and without concentrated and unbridled effort and determination.
On the negative (noneffective) side, I could speak about the chronic physical and emotional pain that still riddles my body and our lives in various ways; I could speak of the continual setbacks and disappointment…and the deep and very personal losses that no one ever sees – that continue to wreak havoc at many levels – levels that force me into a daily field of emotional landmines that seek to obliterate all that I continue to accomplish and overcome. I could speak of the financial toll it has taken and continues to take from our family and my body;
However, what I want to focus on in this writing is not far from either of these things, but a valuable idiom that has been the consistent and steady foundation of all of these things over time.
What I want to write about today, is a lesson that we could all come to appreciate and give an open arms welcome to…..and that is the gift of the things that happen, come to us, appear, or work out at the last minute, sometimes in ways we never saw coming, sometimes as a result of seriously difficult and seemingly hopeless moments – a glimmer of light, a breath of air, right when we need it and often in unexpected ways. I want to write about the good dose of courage required to face a world without this relief, and the sheer awe created as it rises up to present us with a much-needed outcome in the 11th hour of our stripped-out moments.
Some may be wondering what I mean when I reference this verbiage “the 11th hour”. Let me take a moment to reflect on some various views of this, and how it can be used in various contexts…….
The phrase “at the 11th hour” is an idiomatic expression (cannot be understood according to its literal meaning) or allusion (subtle way to mention something familiar) that means at the last possible moment or just before a deadline. It suggests that something is happening or being done in the final moments before a crucial event or situation. (3). In a broader sense, “at the 11th hour” can refer to any situation where action or intervention takes place when time is running out or when it seems almost too late to achieve a desired outcome. It implies a sense of urgency and often conveys the idea that there was little time to spare or that the situation was in a critical state before the last-minute action was taken.(4)
The 11th hour means the latest possible time before it is too late. It is a phrase that means “at the last moment”. It is taken from the Bible passage in Matthew 20 verses 1 – 16 where Jesus taught the Parable of Workers in the Vineyard. The eleventh hour miracle is a miracle you get when it looks like time is running out on you. (1)
Perhaps the most celebrated “eleventh hour” was 11 a.m. on November 11, 1918, the “eleventh hour of the eleventh day of the eleventh month” — “Armistice Day,” which brought an end to World War I.(2)
Note that the Roman time system referred to twelve ‘hours’ from sunrise to sunset (and twelve hours of the night from sunset to sunrise). So the eleventh hour was by definition the period just before the end (of the day). ~Tim Symington (ironically posted in 2014 – 11 years ago)
Ultimately, the phrase “in the 11th hour” has multiple spiritual meanings as well. Being a person who clings to their personal faith as a way-shower…I share these things as specific examples:
Refusing to give up – this supports that idea of not giving up too soon, not giving up the effort, or the attempt, even if things are going, or appear to be going, badly. This is often the time when everything points to needing to give up, and then a solution or miracle comes.
God’s Timing – the idea that God will intervene at the last minute, even when things seem hopeless.
Claim Opportunities – this relies on the actual effort and choice to take the opportunities, or use the resources given to us
Delayed Blessings – this is reflected by the ripple affect of blessings coming to us in various forms long after the time we would have experienced them in a traditional time continuum.
Today, as I write this. I am reminded of how, in the 11th hours of many days…. I have been lifted and plucked from the bowels of depression, exhaustion, and at times a concentrated form of aloofness, or lack of desire to go on.
As I write this, I am honored to share my progress with all of you as a testament of the fruition and reward of hard work, resilience, and sheer grit. I have been managing and expanding on the services I provide in my business; am in school still and working towards a Higher Education Degree to represent my new life. I am making great strides to return to a modicum level of activity and vocational satisfaction in the form of a successful reckoning and comeback tour. I continue each day to show up for my life. I volunteer, advocate, and continue to give back as I am able. Life is hard. Life is a bitch. Life is tough……but my goodness is it also rewarding.
Here I am in all my unique complexities in this 11th year of my rehab journey and literal reinvention of my life.
Today is not without its challenges, failures, learned mistakes, or hard lessons that this process continues to shed light on. Today though, in the 11th hour of this Anniversary, I also celebrate a life I have grown to be proud of. A life shed of toxic people from my inner circle. A life that keeps giving me unexpected and sometimes delayed blessings. A life that keeps giving me miracles with each breath I have been allowed to experience each and every day. A life that has given me a life partner/husband/friend who inspires, supports, and loves me with selfless representation. A life that continues to allow me to witness the love through others (specifically those close to me, but through humanity in its finest glory too). A life that injects an ever-present presence of deep dramatic chasms and last-minute solutions that continue to shape the tapestry in the valleys of my world.
Today I face a turning point, a choice; an opportunity in the 11th hour of this day….. to define my next steps and wear my confidence like a cloak of joy, exalted, as I pay it forward to the next generation.
It takes a healthy dose of humor and unyielding humility to reach the 11th hour. A place when all may, at times, seem lost; when the precipice, or teetering of survival and destruction (or light vs darkness), vie for the same spotlight and seeks to own the moment – whatever that moment may be.
It takes determination to reach the 11th hour. A place that lays naked…. and bares all the beliefs, values, and character of the individual thrust into its path.
It takes realization to TRUST in the 11th hour; to trust that life goes on and will continue to evolve with or without our decree, consent, or approval.
The 11th hour carries the rescuing we all need at times and then sheds the stress, strife and hopelessness from our midst repeatedly; a place where all things come full circle.
Check out our latest page addition to our Site. HOPE TBI has partnered with Vital Ability, LLC to offer our readers access to another resource:
The “Brain Injury Mentor Program” puts you in contact with a mentor who connects with you on a one-to-one basis, helps inspire you, and helps you figure out how to overcome roadblocks. They provide you with resources and tools based on their own experiences, connections, and self-advocacy strategies.
They are someone that is knowledgeable about the medical field that can listen, relate, and be supportive, through a research and strengths-based approach, as you navigate your own brain injury process.
Human beings are creatures of time. We are preoccupied with what time it is, getting somewhere on time, keeping calendars, planners, setting timers, setting alarms, and wondering how much time is left so we can stretch our budget until our next payday, and even how much time is left in our current life. Maybe we are even too obsessed at varying moments throughout our life and as a society as a whole.
Some, like Albert Einstein would even say that time is an illusion…a distraction to keep us shackled between the past and the present. To many physicists, like Carlo Rovelli, who says “…our perceived reality is a sequence of events (past, present, and future), and we assign the concept of time to that sequence” – thus making time an illusion.
Other physicists would say that while we experience time as psychologically real, time is not fundamentally real.
The sensation of time seeming to perpetually “freeze” often arises as a byproduct of awe or amazement, that rare but overwhelming feeling of reverence we experience when witnessing something wonderful or miraculous.
Interestingly, one of the strangest side-effects of intense dread or fear, is the magnification and simultaneous slowing down of time. This is often put into visual form in movies when we see a specific moment or scene slowed to a very dramatic and obvious pace that seems surreal.
Additionally, a lot of us find ourselves losing track of time. Among all the things that can cause this losing track of time phenomena, there are some medical things to consider as possibilities. For example, how fast we are able to process our sensory input along with what we experience with our senses can change our perception of time. There are even a few studies that show that an auditory event can appear to last longer than one that we see visually. According to one study, we feel time passing faster when we enjoy things that are rewarding or pleasurable, which increases dopamine activity in the brain. Losing time can also indicate dyschronometria (loss of time due to dyslexia, dementia, or certain parts of the brain being damaged), ADHD, or mental health issues such as depression.
On the non-medical side of things, losing time is often experienced when we become unaware of time passing as a result of being fully absorbed in an activity or task, a consequence of procrastination, a sea of distractions, having poor time management skills, having busy schedules, following a monotonous routine, lacking motivation, or even caught up in a few moments of unplugged mindful bliss.
Another common way of tracking time is birthdays, the celebration we embrace that says we have managed to survive the trials and tribulations of another passing year. I recently celebrated my 50th birthday, 5 decades, or a half of a century depending on whether it is laden with jokes or not.
Another way of marking milestones of time is by recognizing certain anniversaries. Some anniversaries are endured (usually those associated with heartache, sense of loss, or grief); and some celebrated (like a birth, graduation, marriage, accomplishment, or milestones).
This brings us full circle to what is spurring the creation of this Blog today. This year marks the 10 year Anniversary of the very thing that inspired this very blog – an auto accident on January 4, 2014. I have posted a blog every year on or around this Anniversary, with the exception of last year (the 9th year). I was prepared to write one and then as each day passed it became something I felt I had to forego as the words I envisioned putting here seemed too far out of reach. This year, I genuinely wanted to post this on the 4th yet as the 4th got closer and closer I started to feel some kind of absolute obligation to acknowledge how far I have come. 10 years, after all, is a hell of a milestone.
I kept sitting with the words, thoughts, experiences, and memories, or lack thereof, swarming in my head of the last 10 years of this recovery and rehabilitation journey; a journey where I have inherently made, and continue to make, valiant steps at re-inventing myself. I am slowly blossoming into the me I have been becoming, and it is ironic how things have come full circle, and I am left with a stark realization that I have been gifted with time. This whole process has been extensively mind boggling, emotionally mercurial, and fills me with pause.
Let’s make a full stop to digest that for a moment.
There are many events, lessons, personal developments, professional developments, and a sordid amount of moments that have taken place. The list would be impossible to delineate or detail in a simple blog post. Yet, all have been consequential to my growth as a human being with all the cloaks of comfort and opportunity I wear (as a mom, wife, sister, friend, survivor, student, advocate, business owner, etc).
I will take this opportunity though to turn the hourglass into a verbal synopsis. Pain still wreaks havoc with me, often very unpredictably, though is more managed. Mobility is still a challenge in lots of ways, and in some ways I see, declining, yet I am still mobile, breathing, functioning. This is worth celebrating. Finances are an ongoing real struggle, yet we still find a way to make things possible. I am sure this is due to a lot of divine intervention and is truly a miraculous feat in and of itself. I am currently safe in a home with my family, and in a Country with amenities we would not be afforded in other Countries, and for this I am deeply grateful. My memory and emotions are all over over the place – each like a new discovery that I continue to protect and covet. My health is a rubik’s cube that occasionally lines up, and other times is a series of rotating puzzle pieces. However, I am still able to think, research, learn, and evolve.
I have a deep appreciation for the linked together moments that build on each other. I have been enjoying the last 3 years as a new grandmother. We now have 3 grandchildren. We have lived to see only 2 boys left at home, our youngest start High School, and I myself have even returned to school to further my own education. I have met many professional goals (albeit much slower than I originally envisioned), and continue to move forward with this venture. We have all been blessed with 9 more years of time with my mom (who nearly died, went on and came off a vent in 2015). Indeed, there are many things to be grateful for.
My journey has afforded me the opportunity to network, meet, and advocate with lots of providers, organizations, individuals, and groups that I may not have had the opportunity to know without the time that I have been given.
This is what guides me and propels me in a forward thinking fashion. Seeing the precious process of experiences, creating new memories, and choosing to navigate all things given – whether effective or ineffective in my life.
As time passes, and I continue to reminisce about the last 10 years, and what the next 10 years might hold, I continue to be wrapped in the warmth of HOPE, faith, and an ever present growing awareness of my own mortality.
Until then….we celebrate! We celebrate being 50 years young. We celebrate only being halfway to reaching a century. We celebrate not only surviving, but thriving! We celebrate those moments that build into additional moments, which build into – despite any disabilities, hurdles, struggles, or setbacks – a life worth living.
~Caren Robinson, January 2023
I look forward to hearing your feedback. There are a number of ways to connect.
Happy 10th Anniversary to me and all my fellow HOPEsters!
Hello our fellow HOPEsters. We are glad to be entering this New Year of 2024 with all of you. We are thrilled to share with you that a series of new releases of pages, blogs, and updates on our Site has begun.
Check out our updated tabs across the top of your page when you arrive at our Site. Check each one carefully as some of them have dropdowns that lead to other pages. There have been a few adjustments and a few additions we are sure you will find useful.
Check out our 3 newest page releases done this week:
What in the world is this comment about sex being the “final frontier”? Okay, let me explain.
We are not talking about Star Trek here, though its reference to “Trekkies” is well known. The “final frontier” references space and how space is truly massive. It is estimated that the Universe is 100 billion light years across and still expanding. It’s “final” because it is assumed that our species (as humans) will never survive long enough (in our current form) to explore it all; it means that the voyages of outer space are continuing as we explore and discover strange new worlds; seek out new life and new civilizations.
What does any of this have to do with sex you ask, or removing its stigma? It can seem quite daunting learning all there is to know about sex. There is so much to learn about the body. We are still making discoveries, gaining knowledge, and opening up new opportunities for awareness as time marches on. We are only just beginning to discover how our brain and bodies are connected, how hormones change, how gender differences and other forms of trauma affect rehabilitation and healing processes; and how best to nurture neuroplasticity. We are just touching the surface of how our bodies change during and after trauma. I am certain this will be a discussion that continues as science and studies evolve. However, now, in this moment – let’s get back to the topic at hand.
What’s not to love about feeling good and enjoying feel good touch, closeness, intimacy, and unbridled pleasure? Some may refer to this experience as being “turned on”. However, what happens when that getting “turned on” experience stops working and suddenly becomes mysteriously illusive by getting “turned off”.
I became interested in this topic in the quest for exploring my own experience with my own sexuality changes after being struck with a polytrauma and traumatic brain injury as a result of a 2014 motor vehicle accident. Consensual sex has been an incredibly important and enjoyable part of my development as an individual, a woman, and as a wife. When I first started having sex I found it to be quite pleasurable, and a treasure hunt of sorts to new lands of awkward fumbling, exploratory kinks, taboo experimentation, joyful and explosive orgasms, and body riveting transcendent experiences. My libido was….what I assumed… normal. However, later I would learn when comparing with my other female friends, quite a bit higher than most of my counterparts. What can I say?….I loved sex and all the things that came with the consensual experience. I think sometimes, my desire outweighed the interests of my partner and that could get complicated sometimes. We always found the humor in it – that is, until the accident.
After the wreck, so many things changed about my body. I had…and still have, so many things going on, on so many levels. I was dealing with orthopedic injuries, multi-system issues, endocrinological changes, difficulty breathing as a result of injuries sustained, a traumatic brain injury, cognitive changes, mobility issues, no libido whatsoever, and the sudden inability to do anything myself, including take care of my own body (dressing, bathing, etc) I also suddenly stopped having my menses (medically referred to as amenorrhea).
Okay, here’s some extra-extra that is a bit, you know, EXTRA! In the last 9 years (as of this writing anyway) of this rehabilitative journey, I have had my menses a total of about 4-5 times. On one hand, yay, no messes to contend with. On the other hand this comes with a whole host of potential medical cascading issues for the future – none of which are foreboding of good health and great times. In this part of my life, I continue to live on the precipice of a continual balance between fear and relief. I have not had a thriving and spontaneous libido during that whole time…probably less than the number of times I have had my menses. It sputters, it comes and goes, or just lies dormant just out of my reach and ability to find it. Talk about a mood killer. I couldn’t understand it. My mental interest and desire, and more often than not – lack of interest and desire, was not matching what my body was willing to receive or give in contrast to attempted experiences of the sexual part of me that seemed to be perpetually “turned off”. This dramatically affected me as an individual, a woman, and my relationship with my husband as his wife. God bless him – he has the patience of Job (bible reference there). This brought me to a serious hunt about, “what the hell was going on with my body, and why?” Surely other people had or were experiencing this same strange phenomenon. Guess what? I discovered in my research…that they were! Why did I have to find out about this on my own instead of having this discussed as an important part of my rehabilitation plan by the medical professionals who should have been educating me? I had so many questions!
This blog’s proposed focus is to discuss the relationship changes that take place in the intimate aspects of a relationship after brain injury and trauma. One of the many questions I let guide my research was what changes can happen regarding intimacy and sex after a blunt trauma and what are some ways to adjust to those changes? Another question was how can we normalize talking about sex, identify any changes in the sexual aspect of a person’s life, and the importance of one’s sexual identity as part of the healing process or the rehabilitation plan after a trauma? How can we address the stigma that individuals with disabilities or mobility issues are not human beings with desires, needs, and an interest in that part of their lives?
I am hoping that the blog will accomplish opening up a dialogue about a seemingly taboo topic, rarely even discussed by healthcare professionals with their patients. I am hoping that it will help “normalize” the conversation about sex, our understanding about how sex affects our health, and how a person can manage any changes they may be experiencing after having a change in the way they engage sexually with their partner after a trauma. Viewing sex as an important topic in a rehabilitative care plan along with the other body systems, is worth addressing.
Brain injury is a growing health care crisis in our Country as is the awareness of mental health issues. Changes in intimacy/sexual relationships is quite common after brain injury, yet this isn’t widely discussed. A person’s body goes through numerous endocrinological changes that can affect libido, ability to perform, etc.
Common characteristics for persons with moderate traumatic brain injury include long and short term memory loss, being easily distracted, quickly angered, inability to solve problems, get tired quickly, and difficulties with sexual desires (Sica, 1996).
Many patients with brain injuries report physiological sexual disturbances and decreased sexual ability (Kreuter M;Dahllöf AG). Women with traumatic brain injuries (TBI) have been historically underrepresented in clinical research. Compared to the sexuality of women with neurodisabilities, male sexual problems and treatments are better documented (Bell, K. R., & Pepping, M.) Based on this high level of commonly reported changes as a result of a traumatic brain injury, it is important to inform patients about possibilities of optimizing their sexual ability. Programs organized to provide sexuality education should be an integral component of TBI rehabilitation. (Kreuter M;Dahllöf AG)
Sexuality, even before brain injury, is one of the most complex aspects of life. Sexuality can be seen on the pyramid in the hierarchy of needs for every human being since physical touch, intimacy, and love are an important and essential part of not just living life, but having quality of life as part of that existence. This is further evidenced by the works of Maslow.
In Maslow’s Hierarchy of Needs Theory, the specific needs are listed in detail in a hierarchy of needs pyramid (Maslow, 1970). Maslow’s Hierarchy of Needs is used today for assessing a person’s quality of life (Collins, Lanham, & Sigford, 2000). Health-related quality of life is affected by the person’s physical health, psychological state, level of independence, social relationships, and how these factors combine with one’s environment (World Health Organization)
Maslow developed five levels of the hierarchy of needs; physiological needs, safety needs, love needs, esteem needs, and self-actualization needs (Maslow). The bottom two levels are physiological needs and safety needs which, together, make up basic needs. Physiological needs are biological in nature. For example, the needs for oxygen, food, water, and a relatively constant body temperature are parts of physiological needs. These needs are the strongest, because if the person does not satisfy these needs, then the person would die. Safety needs are the establishment of stability for oneself. Next are social and esteem needs—also referred to as psychological needs. Love and belongingness are the needs to help escape loneliness and alienation and causes a person to have a sense of belonging and a sense of being loved. Esteem needs have to do with people needing a stable high level of self-respect, and respect from others. Self- confidence and feeling valuable are also part of this level. If these esteem needs are not met, the person feels inferior, weak, helpless and worthless. Self-actualization needs are at the top level of Maslow’s pyramid, and someone who is self-actualized is said to be at (or in the pursuit of) their full potential. The need for self-actualization is the desire to become more and more what one is, to become everything that one is capable of becoming. The person who has all the other needs can maximize his or her potential (Maslow, 1970).
Sexuality, while complex, becomes even more complex when you add to it, damage from an injury or trauma that causes changes to that quality of life. Brain injury can directly and indirectly affect important aspects related to sexuality and sexual function. (Moreno JA). To date, there seems to be no study that addresses the possible interventions that can improve awareness of deficits and perceptions of quality of life of persons with traumatic brain injury.
Specifically, examining whether interventions can successfully improve perceptions of quality of life and awareness of deficits are not often seen in the literature. (Chandrashekar, R. 2005)
A brain injury commonly alters sexual functioning as well as desire. It causes a decreased ability to achieve an erection, decreased ability to experience orgasm, decreased sexual desire and diminished frequency of intercourse. A high degree of physical independence and maintained sexual ability were the most important predictors for sexual adjustment. (Kreuter M;Dahllöf)
Two Types of Brain Injury
There are two types of acquired brain injury: Traumatic and Non-Traumatic
The first and most common is called a Traumatic Brain Injury (TBI). A traumatic brain injury (TBI) is defined as an alteration in brain function, or other evidence of brain pathology, caused by an external force. Traumatic brain injuries are defined as closed (or non-penetrating), or open (penetrating).
Injuries from sports or during combat (such as blast injuries from explosions)
Severe head injuries usually result from crushing blows or penetrating wounds to the head. Such injuries crush, rip and shear delicate brain tissue. This is the most life threatening, and the most intractable type of brain injury. TBI can also cause epilepsy and increase the risk for conditions such as Alzheimer’s disease, Parkinson’s disease, and other brain disorders that become more prevalent with age.
Repeated mild TBIs occurring over an extended period of time (i.e., months, years) can result in cumulative neurological and cognitive deficits. Repeated mild TBIs occurring within a short period of time (i.e., hours, days, or weeks) can be catastrophic or fatal.
The second type of non-traumatic brain injury is often called an Acquired Brain Injury(ABI). A non-traumatic brain injury causes damage to the brain by internal factors, such as a lack of oxygen, exposure to toxins, drugs, pressure from a tumor, etc. Examples of an ABI are:
Stroke
Near-drowning
Aneurysm
Tumor
Infection disease that affects the brain (ie: meningitis)
Lack of oxygen supply to the brain (ie: heart attack)
Drug Use
This blog specifically is focused on the research surrounding TBI’s, yet there are similar issues for those with ABI as well.
“Twenty percent of spouses/partners of persons with TBI reported sexual dysfunction, and 44% reported dissatisfaction with sexual functioning. Sixty-two percent of spouses/partners reported a decrease in sexual activity during the year postinjury, 34% reported a decrease in sexual drive or desire, and 34% indicated that sexuality was less important in comparison to preinjury. The sexual functioning of spouses/partners of persons with TBI was highly associated with the sexual functioning of the person with TBI. Age of spouses/partners and sexual functioning in persons with the TBI were significant predictors of spouses’/partners’ sexual functioning, even after controlling for sex of partners and the physical, cognitive, participation, and sexual functioning of the persons with injury”. (Sander AM;Maestas KL;Pappadis)
Rehabilitation professionals should provide education on the potential impact of TBI on sexual functioning for both persons with TBI and their spouses/partners, and integrate the assessment of sexual functioning into their clinical assessment, making appropriate referrals for therapy.
Where does our sexuality come from in our brains? “It is clear that frontal especially prefrontal lobe plays a role in sexual functioning as the cognitive functions are controlled by these areas and are significantly correlated with sexual functioning. The frontal lobe plays a valuable role in a person’s ability to plan, organize, emotional and behavioral control, personality, problem-solving, attention, social skills, flexible thinking and conscious movement. Injury to this area can cause problems such as inappropriate sexual behavior, difficulties with initiating sexual activity or difficulties with motivating oneself to engage in sexual activity. It can also cause difficulties with experiencing pleasurable and sexual sensations, spontaneity, and the build-up of arousal.
The temporal lobe plays a role in a person’s memory, recognizing faces, generating emotions, and language. Injury to this area has been linked to an increase in sexual interest and emotions (hyperactive sexuality), although it can also result in a reduced sex drive (hypoactive sexuality). Some people who have had temporal lobe injury have also been found to develop paraphilias (abnormal sexual interests that can sometimes be dangerous or illegal). Damage to pathways in the frontal and temporal lobes has been linked to difficulties in understanding whether someone else is interested in sexual contact, for example through body language and ‘reading’ emotions.
The parietal lobe plays a role in a person’s perception, spatial awareness, manipulating objects, and spelling; Wernicke’s area – understanding language; Broca’s area – expressing language. Seizures in this part of the brain can cause some brain injury survivors to experience sensations in their genitals, including heightened sexual arousal or sensations that are not pleasurable. For some survivors these sensations can even be irritating or painful.
The hypothalamus and pituitary gland parts of the brain are responsible for producing hormones in the body that regulate sex drive. Damage to these parts can therefore result in hormonal problems.
Brain injury is known to cause changes in thinking, behavior and body function which alters the way a person experiences and expresses their sexuality.
Changes to sexual behavior after brain injury could include erectile problems, reduced libido, the inability to orgasm, and the reduction in frequency of sex….or the increase and uncontrolled acting out of sexual behaviors/acts.” (Robinson, C. – 2021)
The following changes in sexual functioning can happen after brain injury in men and women alike:
“Decreased/Increased Desire: Many people may have less desire or interest in sex. Some people have increased interest in sex after brain injury and may want to have sex more often than usual. Others may have difficulty controlling their sexual behavior. They may make sexual advances in inappropriate situations or make inappropriate sexual comments, or vocal outbursts randomly.
Decreased Arousal: Many people have difficulty becoming sexually aroused. This means that they may be interested in sex, but their bodies do not respond to the touch felt that would normally stimulate sexual arousal. Men may have difficulty getting or keeping an erection. Women may have decreased vaginal lubrication (moisture in the vagina), or lack of sensation in the clitoral/vulva areas.
Difficulty or Inability to Reach Orgasm/Climax: Both men and women may have difficulty reaching orgasm or climax. They may not feel physically satisfied after sexual activity, or feel guilty for not coming to climax with their partner.
Reproductive Changes: Women may experience irregular menstrual cycles or periods.
Sometimes, periods may not occur for weeks or months after injury, or may stop altogether. They may also have trouble getting pregnant and develop signs of infertility. Men may have decreased sperm production and may have difficulty getting a woman pregnant.” (Robinson, C. – 2021)
This begs us to then ask questions about what causes changes in sexual function after brain injury? There are many, including some that are related to the brain itself. Others are
related to specific physical problems or changes in how a person may be thinking about sex or their relationships in general. Perhaps they have developed personality changes which have changed how they feel about the people they associate with.
There are many reasons sexual problems happen after someone has a brain injury. Some are directly related to the damage to the brain itself. Others are related to physical problems or changes in how the person is thinking about sex or relationships in general. They may also have had personality changes which causes them to change how they feel about the person(s) they are in relationship(s) with.
“Possible causes of changes in sexual functioning after Brain Injury include:
Damage to the Brain: Changes in sexual functioning may be caused by damage to the parts of the brain that control sexual functioning.
Hormonal Changes: Damage to the brain can affect the production of hormones, like testosterone, progesterone, and estrogen. These changes in hormones affect sexual functioning.
Medication Side Effects: Many medications commonly used after brain injury have negative side effects on sexual functioning.
Fatigue/Tiredness: Many people with brain injury tire very easily. Feeling tired, physically or mentally, can affect your interest in sex and your sexual activity.
Problems with Movement: Spasticity (tightness of muscles), physical pain, weakness, slowed or uncoordinated movements, and balance problems may make it difficult to have sex.
Self-Esteem Problems: Some people feel less confident about their attractiveness after Brain Injury. This can affect their comfort with sexual activity, their ability to perform, or their perception of how they may or may not perform.
Changes in Thinking Abilities: Difficulty with attention, memory, communication, planning ahead, reasoning, and imagining can also affect sexual functioning.
Emotional Changes: Individuals with brain injury often feel sad, nervous, or irritable.
These feelings may have a negative effect on their sexual functioning, especially their desire for sex.
Changes in Relationships and Social Activities: Some people lose relationships and friendships after brain injury or may have trouble meeting new people. This makes it difficult to date, build meaningful relationships, or find a sexual partner they are confident with, if they find one at all.” (Robinson, C. – 2021)
How do people with disabilities experience and engage with themselves as sexual beings? We have clearly established that while sexuality will remain a complex part of our lives, it has the potential to be greatly affected by brain injury and the cascading symptoms of that injury.
This cascade of symptoms can lead to dynamic changes to an individual’s ability to identify with their own sexuality in a familiar way and may change their outlook and experiences altogether. Sometimes these changes result in disabilities that may or may not be physically seen.
The sexual lives of people with disabilities have been disregarded and stigmatized. As a result, sexuality as a form of pleasure and an expression of love is not taken into account or even recognized for individuals with disabilities.
While one may concede that sexuality is a basic human need, awareness and knowledge about sexuality are shaped through a range of contextually specific sociocultural and religious ideas and practices. People with disabilities are systematically denied access to knowledge about sexuality, sexual behavior and services leading to their sexual marginalization. In addition to financial barriers and provider attitudes, other disability-specific barriers included relying on a known person, often a family member, to attend health clinics, which infringed their privacy and confidentiality. Enabling disability to be advanced at the national level in all development processes, would lead not only to young disabled people but also to non-disabled people receiving improved access to sexual health information, protection, and treatment.
“More than 15% of the world’s population are affected by disability, including physical and sensory impairments, developmental and intellectual disability, and psychosocial disability. While it goes without saying that people with disability have equal rights to sexual and reproductive desires and hopes as non-disabled people, society has disregarded their sexuality and reproductive concerns, aspirations, and human rights. People with disabilities are infantilized and held to be asexual (or in some cases, hypersexual), incapable of reproduction and unfit sexual/marriage partners or parents. The sexual and reproductive health and rights (SRHR) of people with disabilities continue to be contested, and there are particular concerns in relation to women with disabilities. For women, disability often means exclusion from a life of femininity, partnership, active sexuality and denial of opportunities for motherhood.” (Addlahka, R., Heidari, S., & Price, J.)
What also is not taken into account during the rehabilitative process, is the endocrine and physiological changes that can take place as a result of a brain injury, and the resulting changes that can occur in a person becoming oversexualized or on the other end of the spectrum, having a change of, or lacking libido, as a result of those changes. This can impact dating, marriages, and one’s own personal expression. Sexual expression is influenced by cognitive and emotional processes and is dependent on functioning anatomical and physiological systems, in other words, our brains control our sexual organs and responses.
As a human being, it is natural to want to experience pleasure, enjoy the company of another person, experience the touch of another person, and want to enjoy intimacy with your partner (or yourself for that matter).
There are some things though, that must be considered…..and an ongoing conversation that I encourage you to allow to take place…. Not only between partners, but with your provider as well…. BEFORE engaging in sexual activities after a head injury or sustaining any bodily changes that makes a person have newfound limitations, mobility issues, or disabilities.
Now, not everyone who has had a brain injury will have endocrine or sexual changes as a result of that brain injury. Not everyone that has a disability, mobility issues, or bodily changes has had a brain injury. Having a disability, whether caused by a brain injury or not, does not make us less of a person. We may have to get creative with how we have been used to experience sex, intimacy, and the human touch – do things differently…but that’s okay. (Robinson, C. 2021)
“Before resuming sex with a partner, boyfriend, girlfriend, or spouse, talk about it with your doctor or therapist and be guided by their advice. Make sure you are clear and talk with your partner about your expectations, fears, and feelings, including consent. Communication is key! Remember to not put too much pressure on yourself, focus on pleasure…. and not technique.
You may need to change your same old lovemaking style and experiment with other sexual activities or incorporating different things….which can include
oral sex and mutual masturbation
utilization of sexual aids/toys/furniture
to increase intimacy, concentrate on boosting the romance in your relationship by offering lots of affection, complimenting and saying nice things to each other and celebrating big and small occasions.
After a brain or body injury, it is just as important for you to protect yourself from unplanned pregnancy and from sexually transmitted disease as it was before your injury. Even if a woman’s period has not returned, she can still get pregnant. Even if she is having her period, she can still get pregnant. Here are some tips to help with birth control and protection from sexually transmitted disease.
Do research to help figure out what method of birth control and protection from sexually transmitted disease are best for you.
Because of changes in thinking abilities, it may be harder for you to remember to use protection or to remember to take it with you.
You can plan ahead by always carrying a condom or other method of protecting yourself and your partner.
For women who use birth control pills, or a device that must be replaced, using a calendar or alarm on a smart phone can help you remember to take the pills or change the device.
If you are unsure whether your partner has a sexually transmitted disease or has been intimate with others who have such disease, it is safest to use a condom.
If you have engaged in any risky sexual behavior, one of the best things you can do for yourself is to get tested for sexually transmitted diseases and get treated if you test positive.
Consent should not be assumed
“Each of us is responsible for making sure we have consent in every sexual situation. If you are unsure, it is important to clarify what your partner feels about the sexual situation before initiating or continuing the sexual activity. Consent should not simply be assumed by
Age: Age of consent is a legal term for the age a person must reach to give consent to sex or sexual acts. If an adult engages in any sexual acts with someone below the age of consent, they are committing a crime called Statutory Rape.
Also, just because someone is legally of age to consent to sex in your State/Country, does not mean they are mentally competent to consent. Someone may be considered incapable of consent if they are physically, mentally, or developmentally disabled, including….for example….a Senior, with Dementia.
Body language, Appearance, or Non-Verbal Communication: One should never assume by the way a person dresses, smiles, looks or acts, that they are consenting to, or want to have sex with you.
Dating relationships or previous sexual activity: Simply because two or more people are dating or have had sex in the past does not mean that they are consenting to have sex with you.
Marriage: Even in marriage, a person should not assume they have consent for sexual activity. Marital rape is as serious as any other sexual assault. Consent is required in all relationships, including married ones.
Previous Activity: Consent to engage in one sexual activity at one time is not consent to engage in a different sexual activity or to engage in the same sexual activity on a later occasion…even if it is on the same day.
Silence, Passivity, Lack of Resistance, or immobility: A person’s silence should not be considered consent. A person who does not respond to attempts to engage in sexual activity, even if they do not verbally say no or resist physically, is not clearly agreeing to sexual activity.
Incapacitation: A person being in a coma renders that person incapable of giving consent. Someone who is in a coma is unconscious and has minimal brain activity. They are alive but cannot be woken up and show no signs of awareness. They are essentially unresponsive to their environment. Sex with someone in a coma is considered RAPE. Plain and simple. Other incapacitation can happen when Alcohol consumption or use of other drugs (even if those are their own prescription drugs) can render a person incapable of giving consent. Alcohol, sometimes drugs, and even a combination of the two is often used as a weapon to target individuals ….and is used by perpetrators, to excuse their own actions. This is not excusable.” (Robinson, C. – 2021)
Additionally, while all states have their own specific laws – here in Michigan….the Criminal Sexual Conduct laws apply to a perpetrator regardless of whether or not they were drinking. It is important to remember that sexual assault is never the survivor’s fault, regardless of whether they may have been intoxicated or not.
The term “sexual assault” means any unwanted, nonconsensual sexual contact of any kind (including kissing) obtained through the use of force, threat of force, intimidation, or coercion.
“Rape is unwanted, non-consensual sexual contact that includes penetration (i.e. vaginal or anal penetration, oral sex, and genital touching) obtained through the use of force, threat of force, intimidation, or coercion. 80% (8 out of 10) of all rapes and sexual assaults are reported to be committed by strangers, which means that most of these crimes are committed by someone the victim knows, is close with or related to”. (according to RAINN).
Now that we discussed all the serious business about Sex, Consent, and being aware of our responsibilities around sex….let’s dispel some myths about disability and sex….
Myths About Disability and Sex
Disabled people can’t have sex.
Disabled people must pay for sex.
Disabled people aren’t sexy.
Disabled people don’t want or need sex.
Disabled people only have kinky sex.
Disabled people only have sex with other disabled people.
Disabled people can’t have kids.
Disabled people cannot enjoy or are not interested in sex if they are paralyzed.
Disabled people shouldn’t have kids because they can pass on their disability.
If you have sex with a disabled person, you will catch what they’ve got
Disabled people are a burden on their partners.
People living with a disability can’t have “real” sex.
Disabled people need protection, like kids.
Disabled people have more important things than sex to worry about
Disabled people are brave and courageous to try sex (no, it’s just adapting to a new lifestyle….this does not make them brave – it makes them humans with sexual needs….like anyone else).
All persons in wheelchairs, using walkers or canes are chronically ill, frail, or sickly.
Facts About Disability and Sex
People with disabilities can be sexual and enjoy sex.
Some people who use a wheelchair, walker, or can still feel “down there”
Sex is not just all about each other’s “privates”, it’s about intimacy as well
People with disabilities can be kinky and sexy.
Mobility aids can be a fun addition.
People with a physical disability don’t always just “lie there”.
Disabled people can have sex and enjoy it.
Disabled people sometimes choose to pay for sex like people who aren’t disabled.
Disabled people can enjoy the same sexual experiences as those without disabilities.
Disabled people can have sexual desires/needs.
Disabled people can have kids and build families of their own.
People with disabilities can identify as LGBTQ too.
All people need to learn about and understand sex.
Conclusion:
There is a silence within society that pervades many areas of disability and sexuality resulting in the views of disabled people being rendered absent or invisible. Ideally this will open at the very least, a dialogue to inform disabled and non-disabled about people’s sexuality after trauma (regardless of how a person identifies themselves) and empower them in the social and sexual choices they make.
A patient’s ability to cope with a change in brain function post-TBI has been shown to be an important factor in recovery and outcome (Anson and Ponsford, 2006). Articles like this make it possible to make it less of a taboo topic and bring more awareness that encourages providers to include a discussion about sexuality as part of the rehabilitation process.
Rehabilitation professionals should provide education on the potential impact of TBI on sexual functioning for both persons with TBI and their spouses/partners, and integrate the assessment of sexual functioning into their clinical assessment, making appropriate referrals for therapy. (Sander AM;Maestas KL;Pappadis)
Yes, sexuality is one of the most complex aspects of life but, the sexual lives of people with disabilities have been disregarded and stigmatized for far too long. We have the ability through education and awareness to remove those stigmas and make sexuality a normal part of conversations, not just with our healthcare providers, but with each other as well.
There is a way to breathe life back into having moments of being “turned on” when you have unexpectedly been “turned off”. It may feel like a betrayal by your body to not cooperate with you the way it used to before your brain injury. It may look different than it used to. It will, I promise, feel different than it used to. However, as time goes on, and healing continues to work its way into new synaptic connections and your body re-routes itself – you may have the opportunity to experience blissful levitations and waves of sporadic pleasure…. even if for just a moment. This creates a feeling of hope and gratitude that the seemingly robotic new form of yourself is still human after all.
Sex and Disability…..the correlation is a powerful necessary talking point. We must remember when dealing with this level of dis-ability as a result of a brain injury or trauma, not to dis…. our abilities. Let’s boldly go where no man….or woman has gone before! We must continue to keep the conversation, exploration, and research going forward to help remove the stigma and normalize the approach to sex after brain injury and trauma.
Anson, K., and Ponsford, J. (2006). Coping and emotional adjustment following traumatic brain injury. J. Head Trauma Rehabil. 21, 248-259.
Bell, K. R., & Pepping, M. (2001, February 12). Women and traumatic brain injury. Physical medicine and rehabilitation clinics of North America. Retrieved from https://pubmed.ncbi.nlm.nih.gov/11853035/
Bryant, R.A., and Harvey, A.G. (1999). The influence of traumatic brain injury on acute stress disorder and post-traumatic stress disorder following motor vehicle accidents. Brain Inj. 13, 15-22.
Collins, R., Lanham, R. A., & Sigford, B. J. (2000). Reliability and validity of the Wisconsin HSS Quality of Life Inventory in traumatic brain injury. Journal o f Head Trauma Rehabilitation, 15, 1139-1148.
Kreuter M;Dahllöf AG;Gudjonsson G;Sullivan M;Siösteen A; (n.d.). Sexual adjustment and its predictors after traumatic brain injury. Brain injury. Retrieved April 13, 2023, from https://pubmed.ncbi.nlm.nih.gov/9591141/
Lezak, M. D., & O’Brien, K. P. (1988). Longitudinal study of emotional, social, and physical changes after traumatic brain injury. Journal o f Learning Disabilities, 21, 456.
Maslow, A. H. (1970). Motivation and personality. New York, NY: Harper & Row.
Moreno JA;Arango Lasprilla JC;Gan C;McKerral M; (n.d.). Sexuality after traumatic brain injury: A critical review. NeuroRehabilitation. Retrieved April 13, 2023, from https://pubmed.ncbi.nlm.nih.gov/23422460/
Rape, Abuse & Incest National Network) is the nation’s largest anti-sexual violence organization. (2023). Perpetrators of sexual violence: Statistics. RAINN. Retrieved from https://www.rainn.org/statistics/perpetrators-sexual-violence
Reekum, R. V., Cohen, T., & Wong, J. (2015, January 24). Can traumatic brain injury cause psychiatric disorders? Can Traumatic Brain Injury Cause Psychiatric Disorders? Retrieved from https://neuro.psychiatryonline.org/doi/10.1176/jnp.12.3.316
Sander AM;Maestas KL;Pappadis MR;Hammond FM;Hanks RA; ; (n.d.). Multicenter study of sexual functioning in spouses/partners of persons with Traumatic Brain Injury. Archives of physical medicine and rehabilitation. Retrieved April 13, 2023, from https://pubmed.ncbi.nlm.nih.gov/26845190/
Sica, R. B. (1996). The neuropsychological basis of potential co-occurrence of mild traumatic brain injury with posttraumatic stress disorder. [Electronic version] Trauma Response, 5(2), Article 6.
World Health Organization (1998). Life in the 21st Century: A vision for all. (World Health (Rep.) Geneva, Switzerland: Author.
What is the correlation between faith and hope, and what exactly is a miracle as it relates to hope and faith?
Compiled By: Caren Robinson
”The whole world is a series of miracles, but we’re so used to them we call them ordinary things”
~ Hans Christian Andersen
My current connection to this topic is originated from being raised in a faith based home; exploring/educating myself about multiple religions over the course of my life, and life experiences that have shaped my view on each of these concepts.
I already know this is a controversial topic because there are so many beliefs, strong opinions, and non-believers, that I risk alienating someone with my writing, or not connecting with my audience. This was also spurred by the experiences I have had since recovering from a catastrophic car wreck with my youngest son and a series of traumatic life events. This near death experience forced me to face everything I knew to be true and examine that which I didn’t know or understand as well. It conjured up pieces of complex opportunities that I would not have been given were I not to live through these experiences.
I know that this piece will challenge perceptions, and ideally I will be able to present it in a way that is palatable and provokes thought.
What also draws me to this topic is the state of our Country; the global strife; the battle between being spiritual vs religious, vs science focused, vs a balance with some or all of those pieces; and my interpretation of the research done on these concepts and what that looks like. What draws me to this also involves what I have witnessed happen through different life experiences and unexplained events.
When beginning to explore this topic I had to ask myself in a really direct manner – how can I make this unique, novel, personal, and not rehash what has already been said or spoken numerous times before but just in different formats?
I went on a hunt to be able to at first define what faith, hope and a miracle was. Then I began to really immerse myself into how they correlated. Anyone seeking to cope, anyone that believes in a power greater than themselves would benefit from this writing. Anyone, whether they were religious or not, whether they subscribed to a certain belief system or they didn’t – any of them would benefit and get valuable information from this writing. That was the goal and remains the goal throughout this blog entry.
So we begin with the dictionary definition of faith. We can find this in a number of dictionaries and while the definitions are similar, there is a lot of overlap. For this particular blog post though, I chose to utilize the Miriam-Webster dictionary.
Miriam-Webster dictionary defines “faith” as:
a: allegiance to duty or a person; loyalty b: fidelity to one’s promises
a: belief and trust in and loyalty to God; belief in the traditional doctrines of religion
b: firm belief in something for which there is no proof; complete trust; believe without question
a: something that is believed especially with strong conviction especially: a system of religious beliefs
Miriam-Webster dictionary defines “hope” as:
to cherish a desire with anticipation: to want something to happen or be true
trust; reliance
to desire with expectation of obtainment or fulfillment; expectation of fulfillment or success
to expect with confidence; someone or something on which hopes are centered
Miriam- Webster dictionary defines “miracle” as:
a: an extraordinary event manifesting divine intervention in human affairs
an extremely outstanding or unusual event, thing, or accomplishment
a divinely natural phenomenon experienced humanly as the fulfillment of spiritual law
I would identify myself as more of a spiritual person at this point in my life, rather than a religious person. Yet what does that really even mean? You may have heard a lot of folks now-a-days describe themselves that way. There is an even growing number of individuals who are breaking from the confines and walls of organized religion, or don’t even subscribe to any particular belief system who may still describe themselves as spiritual. Then again, you have that subset of individuals still who do not consider themselves religious or spiritual and yet still have faith, hope, and believe in miracles.
The majority of our society uses the words “religion” and “spirituality” interchangeably with the idea that they are the same things. However they are very different and have very different concepts.
“Religion is the rules, regulation, ceremonies, and rituals developed by man to create conformity and uniformity in the approach to God. Spirituality is God’s call in your soul.”
~ lyanla Vanzant
Religion is more external from ourselves and encompasses more of that institutional type of belief process. This is something that often involves a specific building with a structured belief system that contains members, converts, or pledges who practice certain rituals, beliefs, or practices. The fear of punishment for one’s actions is often a principle factor in religion. Religion simply involves a group of people who have common beliefs and faith about the divine. It is about adherence to rules, laws, and specific actions. Religion often discourages people from listening to their own instincts. In fact, most religions instruct and teach their “believers” to accept and do what they’re told, without questioning it; forcing them to stay fixed to a specific text, the scriptures, or whatever specific ideology they are being taught by their religious leaders.
Spirituality is really more internal and self-directed energy and essence that is more about one’s inner-self, soul, and personal development. A solitary experience of the divine that focuses on the individual experience, encourages the focus on individual energy, positive mindsets, and acts based solely on love; the ability to combine truths from various belief systems and apply those beliefs to their lives. Being spiritual entails maintaining one or more beliefs, adapting those beliefs based on personal study, self- reflections, interpretation, and the ability to connect with something greater than ourselves. Spirituality is very personal, and unique. It may involve some very sacred traditions, or practices; and yet, may be reflected in something as abstract as art, or our connection to nature or music. Spirituality encourages folks to do what they feel is right, despite the consequences.
Neither of these is better than the other and is truly a matter of personal preference – though there are plenty of people ready to fall on their sword defending one over the other, but that is not what we are here to discuss or argue in this blog post.
“Miracles are not in contradiction to nature.
They are only in contradiction with what we know of nature.”
~Saint Augustine
People that have hope, have faith. Seemingly, a person cannot have one without the other. Yet what is the correlation between them? There are many that would say that:
they have faith because they need hope
people have hope because they need faith
people have hope because they have faith
they have faith because they have hope
After all, “faith” expresses confidence in the truth, value, or veracity of someone or something and is often characterized by the absence of empirical proof that is not necessarily verifiable. Faith represents a belief that actually exists.
“Faith, in slogan form, is resilient reliance, by which we mean a disposition to rely with resilience in the face of challenges”
~Daniel Howard-Snyder
Then we have “hope”. Hope is directed to what will come, what is possible, toward the future…..of what may come. This may also be viewed as an anticipated fulfillment of a particular intention or focus.
According to Shannon Kincaid, Ph.D. and Philip Pecorino, Ph.D. from Queensborough Community College of The City University of New York – they state in one of their research papers that “…..one does not have to be an incurable optimist to claim that faith is a sufficient and necessary condition of hope. When people have hope they have faith, because they hold a belief that says “I believe that the future will be better.” And while they have no grounds to “prove” the hopeful assumption, they have faith in it. While faith without hope is possible, hope without faith is not. Thus faith is not sufficient for hope. Faith is necessary for hope but faith is NOT SUFFICIENT for hope because you can have faith about a number of things and yet no real hope. “
Then that brings us to miracles. Why do the vast majority of people not believe in miracles? This is possibly the direct result of living in a technologically science-driven and informational era where people are constantly demanding “proof” of everything and often, there is no “proof” of any miracles. No one has ever recorded, on camera, with no cuts or special effects, a leper being healed, a blind man being given vision, or anything even close, outside of medical advancement and treatment options.
Additionally, a lot of folks find it difficult to embrace or believe in something they cannot explain or cannot see. This is also why there is a falling away from organized religion to some degree because there is, to some individuals, no convincing evidence that God exists and if God doesn’t exist then surely miracles cannot exist. Yet, miracles, to me, are not a God-principle. Miracles are simply an unexplained event which absolutely defies, nature, physics, or any logical explanation. Then again, you can believe in supernatural events and not believe in God. Some would argue even that miracles are the result of confirmation bias, or coincidence, and impossible when it comes to the laws of Science and physics and often dismissed as falsities with those things that cannot be explained through a scientific process. The eighteenth-century Scottish skeptic philosopher David Hume argued, “the wise man should not believe in miracles”. The basis for his assertion was what might be called the “repeatability principle”— evidence for what occurs over and over (the regular) always outweighs evidence for that which does not (the rare). Since miracles are rare and contradict our uniform experience, Hume argues the wise man ought never to believe in miracles. While it’s true that a wise man should base his belief on the weight of evidence, it’s not true that evidence for uniform experience always outweighs evidence for what is singular and rare. Hume’s principle nullifies science itself. As an inductive discipline, science necessarily presupposes the possibility of discovering new things that may contradict uniform experience. It views rarity as that which disqualifies rational belief, yet rarity is of the essence of a miracle. Sure, it could easily be said that we need to exercise a heightened sense of awareness and sincere caution when confronted with accounts of the miraculous, however we should also be apt to following the evidence where it leads, even if we cannot explain it, no matter how extraordinary and improbable it is.
“… look for hope in a realistic way, and choose to lean in to it – but let it be part of the larger whole. You need not avoid the grief and distress that go along with the big picture. In fact, hope – or light – can be that much more exquisite and meaningful when it comes with full acknowledgment that darkness exists, too..”
~Dr. Andrea Bonlor PhD
Ultimately, we have control over the way we choose to believe. Whether we choose to have faith, hope, or believe in miracles even – or we choose not to believe in any of these. The belief or non-belief in and of itself seems to have a direct correlation to our actions. Since beliefs affect our behaviors, we have to step up and take responsibility for them. It is imperative to examine claims from all sides. It is imperative to examine claims from several different perspectives. It is imperative to be able to think on our own steed, and form our own conclusions based on our intuition and what we know to be true rather than simply accepting the opinions or forced beliefs of others. It is also imperative to be able to wrap our minds around the fact that not all things have an explanation. Not all things can be proven by Science. We are responsible for our beliefs because they are the consequences of things over which we do have control (for example paying attention to our prejudices, biases, or whether we choose to be open minded and curious; whether we choose to be religious or spiritual). Yet we have no control over the outcome or end result of a specific action or non-action because the Laws of the Universe often defy this.
These times that we live in they are uncertain. In a moment life can change. Everything we knew to be true can be catapulted and often is an immersive experience when thrust into unexpected life altering events. During these times, it is difficult to feel hopeful. There are plenty of studies to show that having hope for the future helps build our resilience – that ability to get through the seemingly impossible and recover more quickly. Hope can reduce stress, reduce anxiety, trauma, and depression. According to the “hope theory” formulated by positive psychologist Charles Snyder and his colleagues, hope gives people the will, determination, and sense of empowerment that allows them to reach their goals. Hope encourages emotional ownership. Hope reminds us of what we are working for or towards. Hope holds space and optimism for the future, keeps us committed to self-care, and ironically is science based. Let me explain. When a person has hope, it releases endorphins in the body and lowers stress levels. This increases mood, improves behaviors, and makes us more productive, even if the end goal or result seems illogical. Now hope is not the same as wishing either though. There is a profound difference between hoping and wishing. Wishing encourages passivity, whereas hope represents an active stance and actually taking action in a specific direction.
If I am focusing on a specific direction, a specific outcome, a desired result and I have hope, can I also have faith without being religious? I believe that we can. A lot of people are fed up with all the negative connotations and bad actions within various religious belief systems, churches, etc. yet they believe in a creator that is infinite and overall cannot be comprehended by anyone. After all, the human mind cannot quite seem to comprehend the infinite, which is why most people find it difficult to accept miracles as a possibility. While we may know, as a species, as people the meaning of infinite or vast….comprehending it is not something we have mastered. Not even with Science.
“Hope is a match in a dark tunnel, a moment of light,
just enough to reveal the path ahead and ultimately the way out.”
~ Dr. Judith Rich
Personally, I believe in God. I believe in the omnipotent power of the Universe. In a power or divine greater than myself. I believe in the Creator, even though I cannot fathom the form of the creator except that the creator is in the molecules and DNA of all things animated and inanimate. I believe that to be a Christian is to be “Christ-like” and that to be “Christ-like” means to embody that which is lovely, pure, and of good rapport. I believe that to be “Christ-like” means to treat others like you want to be treated. It means to be selfless, humble, confident, giving, charitable, and tolerant. I believe that embracing this form of belief is a culmination into one simple yet powerful word – FAITH. Yet I also believe that one can have Faith and not embrace any of these beliefs.
I can say with pure conviction that I would not have survived all that I have this far into my life without a strong connection to my Faith and a deep Spiritual Connection with something greater than myself. I can say that throughout the recovery process after the wreck I was in, there are times – when it feels – that all I have that is consistent, is my Spiritual self, and my every present life clinging grasp, onto HOPE.
I am not without humility when it comes to the fragility of life in general. I am truly in awe of the miraculous events, too numerous to be coincidental, involving that wreck and all of the circumstances in my life since. I truly believe that there were angel wings wrapped around my son that day. It is the only explanation for his survival….the only explanation for my survival. My continued courage to overcome seemingly insurmountable difficulties, medical and otherwise have only been conceivable due to my connection to God and the abiding Faith that I embrace. This propels me and gives me strength to never give up HOPE. I am not religious by any means. You may or may not have a tie to faith, hope, or miracles in your own life and your own experience. Yet I challenge you to keep an open mind and not to get bogged down on the things you cannot explain or prove. Sometimes you just have to know, to trust, and to make the best decisions you can. I also wholeheartedly believe in, support, and have a great and deep love for Science. Yet despite the laws of physics and all that comes with that line of thought, I am still faced with the unseen power of the topic of this writing.
There is indeed a correlation between faith and hope. There are indeed miracles that can happen as it relates to hope and faith and the belief that you give energy and power to.
S;, Griggs. “Hope and Mental Health in Young Adult College Students: An Integrative Review.” Journal of Psychosocial Nursing and Mental Health Services, U.S. National Library of Medicine, 1 Feb. 2017, https://pubmed.ncbi.nlm.nih.gov/28218927/.
We should probably start with defining intelligence. Intelligence can be defined as the ability to solve complex problems or make decisions with outcomes benefiting the that particular individual that involves problem-solving and decision-making. These are functions of the nervous systems, including the brain, so intelligence is closely related to the nervous system. There is not just one way to be intelligent or display intelligence. In fact they are 8 types of intelligence, with a 9th known as “existentialist intelligence” that has been recently introduced by Howard Gardner, a psychologist from Harvard. Gardner’s theory suggests that traditional psychometric views of intelligence are too limited.
What does brain injury look like? Do you know? What does someone look like who has a brain injury? Do you think of them as being unable to think anymore, or as a drooling incapacitated individual who has somehow lost their ability to be independent or do for themselves? What if they tell you they have a brain injury but nothing shows up on a CT Scan or an MRI – would you still believe them? What if someone didn’t start to have symptoms until years later? Do you think this is even possible or would you think symptoms should show right away? This writing is dedicated to any professional that works with or comes into contact with any person who may have sustained a brain injury.
I personally have had numerous concussions (brain injuries) throughout my life. I mean, anytime you hit your head and see “stars or sparkles” – guess what? That is a brain injury. That being said, I never gave a 2nd thought to them because I never had any seeming lasting damage or long term effects. Let’s face it, the education about concussions was not as advanced back when I was a kid, nearly 50 years ago. I mean, the fabric of education and discovery around medical science changes on a daily basis, and I am sure as a society we will continue to learn even more about our brains as time goes on.
When I sustained a closed head injury in 2014 my opinion about head injuries, what they looked like, and how they presented would forever change. In addition to multiple orthopedic fractures, I also had to overcome this new way of existing in a body I no longer recognized. I could not think the same way I used to. I could not pull up my words as fast. My recall was crappy and yet I still maintained the same level of intelligence as before my injuries, just the ability to process and trouble with memory made it near impossible to feel like I was able to express it in the same ways I was used to. Based on multiple accounts, certificates of merit, and other input given to me throughout my life, I was considered to be highly intelligent before all my injuries, so why after that accident was I now just testing as “average”. Why couldn’t I recall basic information, simple words, and struggle with putting my thoughts together? Why did my taste and smell and ability to be in crowds and around noise change?
Noone professional, or in roles to educate me on this really seemed concerned about this at first. Just me. They would say things like, “you communicate really well so you’ll be fine”, or “most of society is average so you are good”, or “you should be happy you aren’t worse”, or “everybody gets headaches or forgets things”. They weren’t listening, only getting caught up in the numbers of the “average” of their other patients – not dealing with me as an individual or taking my concerns, or the concerns of my family seriously. I was worse – they just couldn’t see it. “Great”, I told myself, “I am happy for everyone else, but this is not normal for me”.
How could these providers look me in the face and say I was fine, especially since they didn’t even know me before my injuries? How could they be so callous, indifferent, and lack basic knowledge in a field where they should be teaching me about these changes?
I knew I was different. My family knew I was acting different. The me I used to be was gone. Killed in that accident. I was now living with a stranger in my body. I knew my thinking and processing and memory was off. It was a daily and sometimes moment to moment battle. Yet since I was suddenly “average” I was okay to those looking at the data and my life. I was not average to myself. I was falling apart and while different than those fractures in my body I also sustained and everyone could see, my brain injury they could not see. My injury remained invisible on a regular MRI and CT scan since I didn’t have a skull fracture or hemorrhage. Apparently the general thought was that the brain swelling that encapsulated my brain and then reduced made me all better. False! In fact, I was generally dismissed as just needing to be patient and give myself “time to recover”.
Then the most miraculous thing happened. I discovered in my search a special brain scan called a SPECT CT (different than a regular CT scan). Michigan No-Fault was a lifesaver in providing me the opportunity to get this scan done. The SPECT CT, which showed diffuse axonal shearing in multiple parts of my brain….finally PROOF…something that could be “seen”. Honestly, that test was a game changer in a lot of ways….but that is another story.
Let’s start here though and focus on what this writing is about to begin with. You can be highly intelligent, experience a brain injury and still be highly intelligent. This is what confuses people who see you and interact with you. To them, you are still “normal”. A brain injury does not necessarily affect intelligence. Intelligence is a stable trait which includes many aspects of cognitive functioning. Following a traumatic brain injury, the brain is unable to function as well as it did prior to injury. This is why we typically see some difficulties with memory or academics. However, once the brain recovers there is no change in a person’s overall intelligence. Your intelligence is based, depending on the definition of intelligence, on the sum total of your knowledge.
Someone’s IQ can be unaffected by a TBI, but other parts of the brain that “pilot” or guide one’s brainpower can be messed up. Decision-making and complex social interactions can cause major problems in one’s life and career. The individual with high intelligence may still have cognitive problems such as headache, difficulty thinking, memory problems, attention deficits, mood swings and frustration. These injuries are commonly overlooked, especially in those with high intelligence. Their low threshold of functioning or slower processing speeds may appear as average where prior to injury they would have tested as above average.
Something interesting I discovered in my studies is that the brain of the intelligent person is more complex in appearance, not as soft, and has greater weight relative to size. Additionally, it can be noted that the intelligent brain may have an enlarged prefrontal cortex or parietal lobe relative to other areas of the brain. More intelligent people have more wires, more connections and more complex architectures in their brains. These are reflective of genetics, as well as developmental experience. Also, more intelligent people may enjoy higher processing speed or impulse conduction in brain-wires (axons). But with more complexity in the brain, the net result still could look in performances as much slower decision making resulting in a dulled sense of self, lower test scores compared with their education/experiences, and reduced overall performance compared with their performance before injury.
That being said, Intelligence and personality dysfunctions after minor traumatic brain injury (TBI) (whiplash; slight head impact) incurred in a motor vehicle accident (MVA) were studied in adults after an average interval of 20 months. There was a mean loss of 14 points of Full Scale IQ from estimated preinjury baseline IQ determined from the standardization group (WAIS-R) without evidence for recovery. Personality dysfunctions included cerebral personality disorder, psychiatric diagnosis (30 of 33 patients), post-traumatic stress disorder, persistent altered consciousness, and psychodynamic reactions to impairment. Cognitive loss is caused by interaction of brain injury with distractions such as pain and emotional distress. Unreported head impact and altered consciousness at the time of accident contribute to the underestimation of brain trauma after minor TBI.
I can tell you this. There is a saying in the brain injury medical community that if you have seen one brain injury, you have only seen one brain injury because no two brain injuries are alike. While there are many symptoms that are consistent with each other and may overlap between folks, there is one thing you can be sure of – it is consistently inconsistent.
In fact, there are a lot of misdiagnoses for ADHD, ADD, and ODD when instead these folks should be screened for history of brain injury and have neuro testing done as well before making a blanket diagnosis. Now this doesn’t mean that all people diagnosed with ADHD/ADD are misdiagnosed. However, it does mean that if they have a history of a brain injury it is something worth exploring.
Unless there is objective evidence (evidence you can physically see that is obvious) of brain injury on MRI or CT Scan (hemorrhages, hematoma’s penetrating skull fractures into the brain, etc) people (including uneducated providers) assume the individual expressing symptoms of a traumatic brain injury may be faking, exaggerating, or malingering their injuries or the person has psychological problems that had to have pre-existed before their accident. The reality is that the majority of mild (mTBI) and moderate brain injuries show normal results on an MRI and CT scans. That’s right, you cannot see the injury with these particular tests – and a lot of folks develop psychological changes and personality changes as a result of their injuries.
The basic imaging of an MRI or CT Scan also does not show diffuse axonal injuries nor do they show levels of intelligence.
Keep in mind also when working with your patients, clients, or colleagues, that women also tend to have longer recovery times than men with regard to brain injuries as shown in recent studies. Recent studies on women’s brains finally coming to the front of the class in the scientific community. This is important because almost all research has previously been done on just men’s brains.
We are learning that there is damage we can’t see with the naked eye that requires special testing (like a SPECT CT) and that is called diffuse axonal injuries (DAI). Someone with diffuse axonal injuries may also have brain inflammation or swelling. This can lead to restricted blood supply to the brain tissue and brain herniation. Which by the way, does not necessarily affect the person’s intelligence.
Diffuse axonal injuries (DAI) are caused by acceleration, deceleration, and contact forces. DAI affects individual nerve fibers which can lead to a disruption in nerve communication. DAI is microscopic damage to the axons in the brain neural tracts, corpus callosum, and brainstem, is associated with significant mortality and morbidity. When these forces are great enough it creates a shearing force that severs the axons of nerve fibers, which causes nerve cells to die and can create swelling in the brain. The main symptom of diffuse axonal injury is lack of consciousness, which can last up to six hours or more. A person with a mild or moderate diffuse axonal injury who is conscious may also show other signs of brain damage, depending upon which area of the brain is most affected. Diffuse axonal injury causes cognitive, physical, and behavioral changes that compromise social reintegration, return to productivity, and quality of life of patients and their families. These changes persist beyond the acute phase of treatment and continue for a long period after the traumatic event. Diffuse axonal injury, and more generally TBI, often results in physical, cognitive, and behavioral impairments that can be temporary or permanent.
Due to the diffuse and microscopic nature of the injury, CT scans and general MRIs are typically negative unless small areas of bleeding within the brain are noted within the cerebral cortex or corpus callosum (tracts of white matter in the brain). If a patient presents with unconsciousness and these tests are negative, the medical facility should move onto a different imaging technique to check for DAI. Depending on the severity of the injury and the extent of the damage. A concussion can be considered a mild case of shearing brain injury. At its mildest, DAI can occur unnoticed.
Another thing for providers to be aware of when dealing with their patients, clients, or colleagues is that tonsillar herniation is a type of cerebral herniation characterized by the inferior descent of the cerebellar tonsils below the foramen magnum. Chiari one malformation is a form of tonsillar herniation and is now known to be caused by trauma (like severe whiplash and traumatic brain injury) or in most cases “symptoms awakened” from trauma. This is an often overlooked correlation between trauma and DAI and TBI.
The bottom line here is that you can’t get tunnel vision and just assume that because your patient looks okay, that they are okay. You should keep in mind that a patient knows themselves better than you know them. If they are telling you that something is wrong and they are different – then listen and take that seriously.
If a person has a brain injury with long lasting debilitating symptoms, they can still have the same intelligence. You can have a severe traumatic brain injury with empirical radiological evidence of damage and still maintain your intelligence. Brain injury does not equal lack of intelligence. A person’s intelligence is not a solid basis for deciding a person’s extent of disability after an injury.
What I hope you get out of this is a way to relate to, offer help for, and be better informed about brain injuries so you can offer the best possible care to the people you work with.
The High IQ TBI (a blog which is worth the read about high IQ and TBI – this will take you to a different site)
References:
RS, P. and A, R., 2022. IQ loss and emotional dysfunctions after mild head injury incurred in a motor vehicle accident. [online] PubMed. Available at: https://pubmed.ncbi.nlm.nih.gov/8682910/
Vieira, R., Paiva, W., de Oliveira, D., Teixeira, M., de Andrade, A. and Sousa, R., 2016. Diffuse Axonal Injury: Epidemiology, Outcome and Associated Risk Factors. [online] National Library of Medicine. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5071911/
Wood, R. and Rutterford, N., 2006. Long-term effect of head trauma on intellectual abilities: a 16-year outcome study. [online] National Library of Medicine. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2077538/
Gao, MD, PhD, B., Jiang MD, S., Wang MD, PhD, X. and Chen MD, J., 2000. The Role of Pre-injury IQ in the Determination of Intellectual Impairment from Traumatic Head Injury. [online] Neuro.psychiatryonline.org. Available at: https://neuro.psychiatryonline.org/doi/pdf/10.1176/jnp.12.3.385
Due to growth in our submissions, we took this opportunity to split up one of our pages into 2 different pages for your convenience.
Our original page used to be called Support Groups Sites and Books. This link will no longer work. However, we still have all of the great resources from this page now split into 2 pages.
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Hello my fellow HOPEsters. I am so very excited to introduce and offer some additional and new opportunities and resources to bring awareness about brain injury and polytrauma to our followers, supporters, advocates, and new HOPEsters on a global level
Can you believe we have been around for 8 years now?
While we will continue to offer all of you many free resources here at HOPE TBI, including relatable content through an active Blog, numerous resources, our tireless research on various topics, an evolving informational podcast, networking opportunities, and help in creating and e-publishing your stories – we are now also offering some other additional options as well.
We are now able to offer informational workshopstailored for your organization, group, class or event.
We also are now able to offer supportive services at an elevated level through our new medical advocacy consultant services with monthly memberships. at a considerable and affordable option for those interested in a bit more than what we offer for free.
Check out our paid services pageunder the “About Our Site” tab at the top of the page on the left (first tab on the menu list if looking at this from your mobile).
Let us know what you think check out the page and let’s see those messages start flying. Help me welcome Vital Ability, LLC as a partner.
Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here: Reviews and Testimonials
Your input is important to the development and growth of this website, and we like to know what is going on out there in your thoughts.
Thank you for visiting us! We look forward to hearing from you.
Phonomenal and groundbreaking news that had been spreading like wildfire there since May 2021 and then again in November 2021 – only to be met by disappointment and seemingly caught up in global financial politics and escaping what the focus should be: benefit of rehabilitation for the patients.
Essentially, what this means is that the SPECT scan is now medically recognized for the diagnosis and prognosis of traumatic brain injury (TBI). The SPECT test shows in much clearer detail the presence and extent of the brain injury (especially mild TBI), something that MRIs and CT scans cannot. See this article
Then the Ontario Superior Court of Justice released an important decision in Meade v. Hussein, 2021 ONSC 7850 regarding the use of single-photon emission computed tomography scans (“SPECT scans”). Justice Bale found that SPECT scans failed to meet the reliability foundation test for novel scientific evidence. See this article
This is of global interest and has the potential of benefiting millions of people affected with brain injury. It was noted that the the Canadian Association of Nuclear Medicine (CANM) unanimously adopted new procedure guidelines for brain single photon emission computed tomography (SPECT) imaging for psychiatry and neurology. The prestigious scientific body endorsed brain SPECT imaging for the assessment of many common issues affecting tens of millions of people. See this article
This is surely going to be a very hot topic where the medical community is finally catching up with technology and years of research. Sure to be on the forefront and not going away any time soon is the focus of getting our laws to also catch up with medical and technological discoveries.
This would also involve getting the Insurance industries on board to provide coverage for this diagnostic necessity and to provide better rehabilitative care to our survivors of brain injury and those suffering with mental illness.
I can speak from personal experience about my SPECT experience. It was a game changer for me. It validated all of my symptoms. It helped me not feel crazy, but allowed me to know just what to focus on as part of my rehabilitation process.
Having “proof” for something you know is true, because you are living it, is an overwhelming relief and was a hugely emotional process for sure. I was determined to get answers, one way or the other. This process helped me to be able to then focus on what I needed to improve and work on, to let the healing commence, and be able to move on to acceptance in the grief and transformation process of re-inventing myself. The results of the SPECT allowed me to be able to talk about my injuries in a more educated and informed manner.
I honestly wish I had been able to access the services from day 1 of my injuries. It would no doubt improved and perhaps even shortened the rehabilitation process. I am a staunch supporter of the SPECT scan and am hoping that there are ongoing landmark and groundbreaking determinations that benefit the quality of life of all patients.
Share this Blog with others. Share with a friend, a healthcare provider, a family member, a colleague, in a meeting, in an email, in a Facebook post, in a presentation, on other social media sites, on your own blog, etc. The possibilities are endless.
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Come and listen this coming Wednesday 8/10/2022 at 10pm EST as Kim and Co-Host Caren, will be discussing Navigating Mental Health after a Brain Injury, and reframing our thought patterns.
Can a brain injury lead to mental health conditions? How can we help ourselves self-regulate?
Check out the Orginal HOPEster. The Survival Story of our HOPE TBI founder.
It’s been a while since I have shared my story and I wanted to share it with those of you who may not know it. Thank you for being here as part of my ongoing recovery. I just wonder if we just continue in our process for the duration of our entire lives.
Isn’t the brain and the body magnificent?
“My name is Caren Robinson. I have always been a busy gal. Adrenaline junkie to some regards. Loved riding motorcycles, roller coasters, diving off bridges to go swimming, and also anything to do with The Arts really. I have always had a job since I was … Continue reading HERE….”
My Story page has gotten a wee bit of a face lift, and a few more clarification and more information added. Funny how as time passes, things are easier to talk about. At least some things.
Help us welcome our newest HOPEster. Cathy is from Everett, Washington.
“I got in a very bad car accident on August 8, 1976 when I was 14 and preparing to go to high school. I was born in the 60’s (1962 to be exact). That was a time when not a lot was known about the after affects of sustaining a severe head injury……..”
“…..If I could share any one message with all of you out there in the world, it would be to not give up. It’s never too late to get help, and keep fighting to get where you want to be in life, even if you have to do it a little bit differently than others.”
One of the biggest challenges is finding new hires who have disabilities. It’s difficult because they might not have the opportunity to work in a job where their disability is accommodated. For example, someone with hearing difficulties might be limited to jobs that can easily be vocalized.
If you want to attract differently-abled employees, you’ll need to put structures in place to accommodate those disabilities. In this guide, HOPE TBIshares some key tips for making your workplace more inviting to more diverse people.
Ideas to Attract Differently-Abled Applicants
SHRM suggests creating a more inclusive culture, making sure your website can work with assistive devices, offering career planning opportunities, and more. Reasonable accommodations are also important for different types of disabilities, such as allowing for part-time work, providing accessible transportation options, or any other type of accommodation that would help support your differently-abled employees.
Incentives for Differently-Abled New Hires
You should also think about what incentives you can provide for people with disabilities. For example, what if you offer an internship program for people with disabilities and then hire them once they graduate from the program?
It’s a win-win situation because you are able to reach out to this target audience and offer them the opportunity for advancement while providing valuable experience and skills training at the same time. Offering career planning opportunities can also help attract differently-abled new hires. It’s important that they have opportunities to think about their long-term plans in order to feel confident and empowered in any role they pursue.
Revamp Your Recruitment Process
When it comes to recruitment, make sure you’re including all different methods of sourcing and hiring. Keep in mind that people with disabilities are a viable pool of talent to consider when you’re looking for new hires.
For instance, IMPACT notes that you can make your website more accessible to those who need different types of assistive devices by making sure everything is in plain English and using contrast colors for text. You can also offer opportunities at your company for internships or mentorships for those with disabilities.
Finally, think about how your process may be excluding this group from applying. Maybe you don’t have an option on the application form for people who have certain types of disabilities? In order to find out where this might be happening, provide contact information on the application form so that people can ask questions.
Create a Budget for Reasonable Accommodations
If you’re interested in being an employer of differently-abled individuals, budget for reasonable accommodations in the workplace. This includes office supplies and furniture that can be maneuvered to suit those who have physical disabilities. For example, consider providing a desk chair with wheels so that an employee who uses a wheelchair can roll from place to place instead of having to walk around the entire office.
Other accommodations may include louder alarms or bigger signs because some people with hearing impairments or dyslexia may not hear or read things correctly. Budgeting for these adjustments will help you attract more diverse talent to your company.
In addition, a critical housekeeping step is to establish yourself with the state to make sure you are compliant with tax laws. This is also essential in yourEIN application, which is necessary for the IRS to use in payroll taxes and if you offer retirement plans.
Finding Differently-Abled Applicants
Michigan has several programs designed to provide disabled population services, as well as other related services. This is a good place to start if you want to connect with differently-abled people who are looking for employment.
HOPE TBI helps take the struggle out of finding resources and information when someone is faced with a trauma from a polytrauma or brain injury, and the resulting conditions from those injuries (acute or chronic pain, symptoms, experiences, processes, etc.) and various treatment options available. Connect with us today to find out more! hopetbi4ever@gmail.com
Did you learn something, read anything that inspired you or impacted you on the HOPE TBI site at https://hopetbi.com/ ?
HOPE TBI brings awareness, educates about self-advocacy, and helps take some of the struggle out of finding resources and information when someone is faced with a trauma from a polytrauma or brain injury, and the resulting conditions from those injuries (acute or chronic pain, symptoms, experiences, processes, etc.), and treatment options available.
Do you support bringing awareness to the topics written about and want to see more content? Check out our Blog at https://hopetbi.com/blog-and-updates/
Keep HOPE TBI active, growing and it services FREE.
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(all yearly donators of $500 or more have the option to have their name, “in memory of” name, or business name/logo listed on our “Sponsors” page for one year after donation made)
Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here: Reviews and Testimonials
Your input is important to the development and growth of this website, and we like to know what is going on out there in your thoughts.
Thank you for visiting us! We look forward to hearing from you.
Let us introduce our newest HOPEster…..Melissa Whyte, Survivor.
Let’s welcome her to HOPE TBI. We invite you to read her survival story below:
“I want to leave a legacy that shows people that it is possible to overcome adversity. I want them to know it is possible to see past a persons difficulties to see them as capable. I want people to see past my difficulties and see what I was able to accomplish, even with so many things stacked against me………”
FAITH is stepping on the “seeming void” and finding the rock beneath.
With FAITH comes HOPE.
Where there is HOPE there is FAITH.
Where there is FAITH.
MIRACLES happen.
I can say with pure conviction that I would not have survived all that I have this far into my life without a strong connection to my Faith and my deep Spiritual Connection. I can say that throughout this recovery process, there are times when it feels that all I have that is consistent is my Spiritual self and my every present, life clinging grasp onto HOPE.
I am not without humility when it comes to the fragility of life in general. I am truly in awe of the miraculous events, too numerous to be coincidental, involving the wreck I was in and all of the circumstances in my life since. There were angel wings wrapped around my son that day. It is the only explanation for his survival….the only explanation for my survival. My continued courage to overcome seemingly insurmountable difficulties, medical and otherwise have only been conceivable due to my connection to God and the abiding Faith that I embrace. This propels me and gives me strength to never give up HOPE.
“Can’t” is not in my vocabulary as a general rule. I have never been that type of person to accept “can’t” as an acceptable answer. I feel this limits the education and growth of ourselves as individuals, professionals, spouses, family, parents, and friends. If at all possible, rid this word from your life. Instead replace it with “can attempt” “can make effort to” “can do it” “can accomplish” “can change my thinking about” and any other word or phrase that includes your ability to put forth the effort in living the opposite of “can’t”.
One of my favorite verses is Phillipians 4:13 “I can do all things through Christ which strengthens me”. This has fueled me for years.
I lived through this wreck for a reason. I was meant to survive. There is a plan, a special plan for my life. My life matters. I truly believe this. I am not here to merely exist without offering some meaningful contribution to my family and the world. I have been led to serve others my whole life. I have enjoyed this life of service immensely. I am grateful for the blessing that I have been given to continue my life’s journey. Sometimes, I am not sure why I was CHOSEN to live, while others with far less injuries have died – but I will not waste this time. It is precious, and every moment counts!
My dad used to say that many are “LED” but few are “CHOSEN”. I never understood that very much as a child, however, I feel I am getting a better grasp on this as an adult – especially as one who continues to survive from a Catastrophic and Life changing event (but then aren’t all life events life changing?)
I find myself led to continue to write about, speak about, and educate about my Trauma, my Survival, my Rehabilitation, and Self-Advocacy – so that others may perhaps find something useful from my experiences and I have a written expression of healing. I am enormously grateful to my mother for starting a blog for me in the beginning, and for being a testament for my life. The timeline of events that she has written about has been very helpful to me as well and helped me fill in a lot of blanks for things I just do not remember. I love seeing her posts and hearing her words like a warm blanket of protection. How she knows how to say just the right things still amazes me. I hope, in the end, that my kids love me as much as I love her; as much as she has helped me to continue to love myself. She is amazing.
I am blessed with a selfless and loving husband as well. He has sacrificed much for me. He makes me feel beautiful and shines light in my life, even in the darkest of nights. Not only did God Choose me, but so did he. My love for him is unyielding and he is simply the best man I have ever known in my entire life (before and now). He is beyond amazing and I am truly fortunate to know such love.
My HOPE is that I continue to evolve professionally and personally. My HOPE is to continue to be led to the proper medical care, and interventions to help me further my life as a functional, active, evolving, spiritual and passionate human being. My HOPE is that my family is continually blessed with support and strength to endeavor this journey with me. It has not been easy on them either.
I realize I will never be the same Caren I was before the wreck. That much is abundantly clear. The “new normal” I embrace I am still getting to know…….even years later. From being bent and literally broken, to a process of healing that incorporated plates, screws, nails, modern day technology and a sheer will to survive. I have been able to find value in the life I have been gifted to live. I am not perfect, I am far from it. There are struggles that still challenge the fabric of my existence. There are challenges and fears I still face. Sometimes, on a daily basis. However, I am grateful for the opportunity to face them and continue becoming the best version of myself possible.
We are allowed to be a masterpiece and a work in progress. I am a work in progress, my life is my masterpiece, and I am not giving up on ME. Your life, your story, your experience, your sheer grit to survive is your masterpiece. I see you. You are not invisible. Don’t give up on you.
If you are reading this, thank you for being here at this moment. Please don’t give up on me either. With your help, your ongoing support, your presence, your intercession, your skills, your energy – real or virtual, all things are possible.
Easter actually began as a pagan festival celebrating spring in the Northern Hemisphere, long before the advent of Christianity. “Since pre-historic times, people have celebrated the equinoxes and the solstices as sacred times,” Later, Easter became recognized as the highest celebration of Christianity. Because the resurrection establishes the belief in life after death. Happy Easter if that’s you. However you believe, spring signals a time of renewal, when new life and color emerges.
Add the Virus and other news hot topics the past few years, and there has been ample opportunity for us to have reason to grieve. With more isolation, lock downs, fear mongering .. Grief over real losses of all kinds, has perhaps been even harder to bear. Grief is stressful enough, but add everything else mentioned, and no one has been immune to grief. We must take time to grieve, or we would never fully appreciate gratitude.
Tonight we discuss grief and renewal for brain injury survivors. We’ve felt the sorrow, now how do we refresh and move forward?
This show is a gathering place for anyone seeking recovery from the challenges of life on life’s terms. We discuss useful tools that have helped us lighten the load, of our journey through recovery. This is a “we” recovery program, because it is in the “we,” that we find the new “me.”
We focus on the four A’s of Recovery: Awareness, Acceptance, Action and Adaptation. This is a place for survivor’s striving to become thrivers, which takes a good bit of Warrior!
Hosted by Kim Justus, author of In a Flash: Miracles Here and Beyond and Hootie’s Hollow and the Magic Tree found at inaflash.org and Amazon & “Like” me at facebook.com/inaflash.org too! For More on Caren’s great Blogs and Resources see: hopetbi.com
This is where it all began. The HOPE TBI Blog and the HOPE TBI Website.
It all began with my mom starting a blog and fundraiser on my behalf, years ago. My mom has been one of the many valuable supports in my life, through everything. She never gave up on me; for that I am grateful.
I asked her to collaborate with me to do a story page to honor her and the process she put so much effort into on my behalf. This is that story.
This is an excerpt from the Paper written by renowned Neurologist “Masel”:
“……The purpose of this paper is to encourage the classification of a TBI not as an event, not as the final outcome, but rather as the beginning of a disease process. The paper presents the scientific data supporting the fact that neither an acute TBI nor a chronic TBI is a static process—that a TBI impacts multiple organ systems, is disease causative and disease accelerative, and as such, should be paid for and managed on a par with other diseases. Despite the fact that patients with a TBI who survive the acute event do not die of their brain injury per se, a TBI is a disease…….”
Masel, B. Conceptualizing Brain Injury as a Chronic Disease. Vienna, VA: Brain Injury Association of America, 2009.
This is a post I wrote just as I was really learning to claim my role as an advocate for myself. It was a turning point for me, in truly learning to trust my body and not necessarily what I was told about my body. It was when I decided to trust MYSELF, and to speak up when I felt or knew something was wrong.
This experience with this nightmare provider was someone I should have been able to trust. It turns out he took advantage of that trust. This experience brought me to a painful realization that not all doctors respect the “do no harm” oath.
In fact, if left unchecked, those who don’t value that oath, can cause a great deal of additional irreparable harm to their patients, can absolutely cause medical PTSD, and change the course of a patients care for the worse. I share this again as it should not be forgotten.
Find your voice and speak up for yourself. You are worth it
(previously posted elsewhere in 2014, yet worth reposting)
The Golden Girls
Golden Girls Explain Golden Opportunities
TBI is an invisible disease….so is PTSD….and so are things that are obvious injuries if NOT actually checked…..if the doctors actually LISTENED to their patients and did the tests and procedures they were supposed to from the beginning rather than making judgements without following through – or without actually consulting the patient about their decisions.
This is essentially what happened to me too. I was in a vehicle accident with polytrauma and Traumatic Brain Injury and several fractures. Then I keep complaining all through therapy that my pain was worse and I was losing strength on my right side. I was released to attend PT OT and ST without restrictions that during and after therapy….I spoke of my pain and limitations often. Not the referring Orthopedic Dr. nor the Rehab Dr. ever did a CT Scan to follow up on my pain or x-rays of all the previous fractures. In fact, the Rehab Dr. said it was probably all anxiety related and I needed to put in “more effort”…He even held my arm up and dropped. I couldn’t hold it up on my own. He thought I should try harder – what he didn’t accept is that I was giving it all that I could. It just wouldn’t work….and now I know why. As it turns out for the last 9 months I finally get that CT scan and it shows that my ribs 2-11 are still fractured and displaced with NO HEALING…and that shattered and fractured scapula on the R side?….YEP….no healing either. I am now scheduled for surgery Oct. 8th to plate and put screws on each rib and reconstruct my scapula/body and plate and screw those as well…..obviously THEY weren’t putting in enough “effort”…. if they only listened to me. Feels good to be validated and know that I can actually trust my own judgement about my body though…my PCP on the other hand has been great so far….I have a medical case manager too who has been advocating for me as well….I can say that they only added to the anxiety I was already having about the wreck in general….those other doctors, that is.
This is a great episode from the Golden Girls show about Invisible Illnesses where she confronts the Dr. who didn’t listen to her…..this is just AMAZING!!!
I only wish I could do this with my Nightmare Doctor….
Compilation of all the doctors Dorothy went to and the process she went through to get answers:
Let us introduce you to Stephen Bristow. He is from Michigan and has a unique story of how the system sometimes fails it’s children. This story also drives home the importance of adequate services and interventions that are both compassionate, ongoing, and swift; a stark reminder of just how far we have come with the treatment of Brain Injury over the years, and how much further we have yet to go.
“I was young about five years old or younger when I sustained my first traumatic brain injury. This was caused by my father. He was very abusive. He was also a Navy man. The second traumatic brain injury I recall happening around 7 or 8 years old, and had something to do with baseball The one titled “mother” was not around most of the time. When she was, she was also abusive, and I sustained many beatings from her. She was employed at a Utility service…….”
It is brain injury awareness month. If anyone is interested in telling their story, let me know. I would love to help you get a page with your own link. I don’t charge for this. It is a way for me to pay it forward.
Story Link Tip: Having your story link placed on a business card with your name and contact information is helpful as well. You can then hand that card to anyone that you want to share your story with.
Some of you may remember this show back in the late 70’s, early 80’s. For those old enough to remember..this was about the Bradford family, which consisted of 8 very independent children and the trials and tribulations of growing up, facing important decisions, and other tough topics of that time. They had a father, Tom, who to me seemed quite oblivious to a lot of common sense solutions, yet when it counted, came through as a great source of love and support for his family.
There were a lot of movies, TV shows, and other depictions of families that carried us through relatable, humorous, and sometimes downright serious content and the process of life transitions, which we would stay glued to the TV or Big Screen to see just how things turned out, see justice done, capture a glimmer of hope, or just escape to be entertained for a wee bit.
In those moments, of living vicariously through our favorite character’s lives – we shaped our view of not only ourselves, but the world around us. We shaped our views on advocacy, education, societal roles, relationships, our sexuality, and they challenged us to think outside of ourselves just a bit….especially if they included controversial content – personal writing ahead of its time really. When a character would be removed from a show, killed off, or somehow taken in a different direction – it sometimes affected us deeply – especially if we watched them grow up or felt we were growing up with that character as well. Relatable, right? It sometimes felt like we were losing a friend or loved one of our own – even though, by all accounts, this was completely unrealistic. How could we go on? Yet we did. One day moved into the next, a new show, new series, new movie emerged and suddenly the previous experiences though remembered, became a distant memory, now replaced by better writing, CGI, better special affects, powerful acting, and tapping into those topics that often remained previously untouched.
Some of us also no longer had time for that level of commitment to a “character” because we were building our own “character” through our lives, our own careers, our own families. Striving to make sense of all the changes, the challenges, the amazing tribulations, the absolute exhaustion that being a responsible adult brings. How could we go on? Yet we did.
We all have experienced trauma in some sort. Some from their first breath out of the womb, some their entire childhood, some their entire life in one form or another; some – a one and done situation which impacted the entire fabric of their lives despite all the good that exists around that one trauma. Some of us persevere, some don’t. There are so many factors that influence all of those changes and the way we evolve through them….or don’t. I am not even going to begin to attempt to list them all here. Yep, there are that many. We wake, we wonder – How could we go on? Yet we did, and we do.
In this moment, as I reflect on my life on this 8 year Anniversary of the wreck that changed my life forever, in every aspect…..I am struck with examining all the characters in my life, my influences, my beliefs, my moral compass, and I think of all that I have survived and continue to endure.
I think of the effort required to overcome unimaginable pain, hopelessness, limitations, a stripping of life, dreams, and independence since that fateful day. There were a multitude of moments where I would cry, rage, and scream…perhaps even laugh hysterically at the irony of things being the opposite of what I envisioned for my life at that time and since. The stages of grief became my daily association with that one question that no matter how I progressed or what kind of HOPE I held….still loomed waiting for answer. How could I go on? Yet I am, and I do.
During this process of trauma, re-inventing myself, effort, and personal growth – I have learned some very hard, valuable lessons. Some I am truly grateful for…others, not so much.
I have had my rose colored glasses ripped from my face, stomped on, crushed into the ground, and damn near destroyed from an repairable possibility. However, once you see things from the way they actually are vs how you think they are….well….now that has a life altering affect of its own. Which way you allow it to take you depends a lot on your own mental fortitude and ability to CHOOSE to go on, CHOOSE to survive, CHOOSE to be the best version of yourself in this very moment. It depends a lot on whether you CHOOSE to accept and embrace the smallest victories, the smallest growth, the smallest blessings. How do we go on? We CHOOSE to.
I still enjoy watching a bit of TV and a movie here and there. It is interesting to see how the writing in the shows nowadays differs a lot from my younger self’s experiences with the progression of each character. I find myself, with the assistance of technology, social media communities, and access to a plethora of information readily available at my fingertips…..that my possibilities for research, growth, healing, advocacy, and a life drenched with an unpredictable next step – have been forming that picture on life’s big screen in answer to the beckoning call of each Anniversary that reminds me that I am still here….thriving….without even knowing I could sustain as long in this form…as I have.
I am struck with reflecting on this being the 8th year since the wreck. The 8th year since I fought for each breath and each step and each ability. The 8th year of creating a living visual answer of….despite starting over and over and over – “How do we go on?”
I am left with this. Eight is Enough. Enough time to decide to live; Enough time to choose HOPE permanently; Enough time to continue to vibrantly live a life of gratefulness, appreciation, and acceptance of what is, and what isn’t; Enough time to speak my truth, sound my voice, and share my words without feeling self-conscious about what others think about my experiences, or me as a whole person. Enough time to decide to not just plan, envision something someday, not just try….but do.
Eight is Enough. Enough time to finally be able to say out loud….”I am disabled, but I am more than my disabilities. I am doing, and will continue to, do the best I can every day…and THAT….is enough!
The term “traumatic brain injury” wasn’t something I ever thought too much about pre-accident. It was something that happened to people in stories in the news, it was something that happened to people in the movies. It never occurred that it was something that could happen to me. And then it did. ----
National Concussion Awareness Day is celebrated on the 3rd Friday of September. Bringing awareness prompts you to study the signs of concussions and take them seriously, as they are a brain injury.
Concussions have become an epidemic in the United States, with millions of traumatic brain injuries happening each year.
A concussion should be suspected if there have been both: A blow to, or sudden whiplash injury of, the head, and any of the following symptoms:
•Headache •Dizziness or poor balance •Sensitivity to light or noise •Blurry vision •Feeling in a fog •Feeling generally not right •Trouble sleeping •Drowsiness •Trouble concentrating or remembering •Irritability or emotionality •Fatigue •Confusion •Sadness •Nervousness or anxiety •Brief loss of consciousness
If an individual experiences a hit to the head coupled with any of the above symptoms, a concussion should be suspected and the individual should be removed from sports until evaluated by a provider trained in concussion care.
As concussion gains more of an international spotlight, there’s still a shortage of doctors equipped to handle concussions.
On September 11, 2001 our Country and the global community would endure something that scarred its heart, shook us to the core, and struck fear in the lives of many around the world.
More than 90 Countries lost citizens in a series of attacks.
It was a time we all became painfully and acutely aware that freedom is indeed not free. Our resilience is what unites us. Unity is what helped us get through it. Unity is what will help us to keep surviving.
We will never forget!
Here are the names of the people who have died from 911 Attacks. WE REMEMBER!!!
As of August 2013, medical authorities concluded that 1,140 people who worked, lived, or studied in Lower Manhattan at the time of the attack have been diagnosed with cancer as a result of “exposure to toxins at Ground Zero
2,977 people were totalling in the aftermath of the tragedy – this included 19 hijackers that committed murder–suicide, and more than 6,000 others were injured.The immediate deaths included 265 on the four planes (including the terrorists), 2,606 in the World Trade Center and in the surrounding area, and 125 at the Pentagon.
Most of those who perished were civilians except for 343 firefighters; 71 law enforcement officers who died in the World Trade Center and on the ground in New York City; another law enforcement officer who died when United Airlines Flight 93 crashed into a field near Shanksville, Pennsylvania; 55 military personnel who died at the Pentagon in Arlington County, Virginia; and the 19 terrorists who died on board the four aircraft.
1,647 people who died have been identified through DNA
This group is to list durable medical equipment, supplies, technology, machinery, prosthetics, etc. that you are ‘gifting” for FREE to someone in need.
You may also post a request if you are needing something as well. Please only request item(s) if unable to acquire by any other means. No acquiring items just to sell them.
THIS GROUP IS NOT OPEN TO VENDORS.
[Disclaimer: This group does not support or endorse the exchange of medications or supplements in any form. Please see your medical providers for those needs. This Group or its Owners/Moderators are not responsible for any transactions, equipment, or product exchanges with another member]
Gifted Items/Needed items can be, but are not limited to: vehicles, hospital beds, wheelchairs, braces, ventilator equipment, oxygen concentrators, traction equipment, personal care aids, books, Posey Lifts, adaptive equipment, Manuals/information, Bathing Supplies, mobility aids, etc – and other items useful to a person with a disability or injury. The sharing opportunities are endless.
We realize that Insurance does not always cover all the needs a person has after experiencing a devastating and catastrophic medical emergency. We also realize not everyone has insurance. We understand being financially strapped, destitute, or handicapped after a life changing medical event.
Being a member of this Group does not imply nor guarantee that you will have your needs met or provided, but merely an additional opportunity to network with those who may be able to help directly or indirectly.
This Group will also allow you the opportunity to share your fundraising pages or place to post your public funding request page links (like Go Fund Me Page, PostHope page, Pay It Forward Page, YouCaring page, Give Forward, Donors Choose, etc). Be prepared to be vetted for authenticity.
It is strongly advised that if you meet anyone offline, that you do so in a public and safe location.
We want to introduce a Survivor story and a Caregiver story. The battle for survival and quality of life continues with these two powerful stories.
Debbie Webb – “The year was 1990, I was practicing barrel racing and the horse I was riding slipped onto her side. Upon impact with the ground, I was immediately unconscious.” Check out her story here:
Kris Ruckle-Mahon – “My role went from being a parent to a caregiver on April 11, 2007, something I was not financially prepared for. I was fortunate though, to have a great work and family support system to help us through it.” Check out her story here:
Grab a cup of tea or coffee and snuggle in for a read of the Survivor story about Chasity Christian. A survivor of many traumas and how love is carried in different forms – from our newest HOPEster.
Hello HOPEsters. We are thrilled to be able to share with you a list we have tirelessly compiled of “clinically practicing” Neuroendocrinologists who provide direct patient care.
This is not an all inclusive list and does not include Neuroendocrinologists that are “researchers or lecturers” only.
Let us know of any others that are not on the list and we would be glad to add them.
Also check out our Neuroendocrinologypage as well, if you haven’t already done so.
Ya’ll have seen and heard me talk about Auto no-fault a lot over the years. You have heard how I have embraced self-advocacy on my own behalf and encouraging such with others as well.
Some changes were made to the Michigan Auto No-Fault laws that have hurt the protective measures that No-Fault owes its recipients. It has been disastrous and is literally costing lives.
Check out C-Pan (Coalition Protecting Auto No-fault) and Michigan Auto Law for more information and the various changes.
However, not all HOPE is lost just yet.
THOUGHTS?
Here’s an idea to bring awareness to Michigan No-Fault Laws/Changes, an invitation to all Senators, lawmakers, and our Governor to “Have A Heart”.
Each legislator who has voting power on the No-Fault issue, spend one week. Just one…..with a catastrophically injured patient and their family. They have to be a caregiver for that week, working with family or nurse supervising direct care..
Then let’s see how they think at the end. I think before pushing paper and making decisions from behind a desk that impacts so many lives….they should be required to live it in some way and make it work by their own effort and examine what they are expecting (56 hours limit being suggested for example) before making laws for it.
It’s easy to judge if you aren’t living it every moment of every day.
We could call it OPERATION: “Have A Heart”
#haveaheart #wecantwait
Here are suggested parameters:
Live with family in their home for 7 days. 24/7 (live there, sleep there, be available all 24 hours – regardless of activity involved in at the time)
Provide direct care to patient along with caregiver (regular or fill-incaregiver, or at direction of family)
No personal tablets, laptop computers, other electronic devices allowed to be brought into home. No use of phones during care time.
No refusing to do any care needed (due to discomfort, grossness, lack of knowledge, or fear of messing up).
No mistreatment, verbal abuse, or physical abuse of patient or family.
No help from anyone outside of what family has immediate access to without you there (no assistants, runners, interns, etc)
No buying or purchasing anything for yourself (including food or drinks) or the family until after 7 days are completed. They eat and drink what family does on their budget.
You may be asking yourself how you can help. How can you make an impact to continue to bring awareness and support self-advocacy? How can you become a HOPEster?
Maybe you don’t have a Brain Injury and have never experienced a Polytrauma. Maybe you came upon this Website while searching for something else. Perhaps you are curious about the content, or know someone who has had a Concussion, Brain Injury or a disability.
Whether you are here accidentally or purposefully we hope you have found information and resources in this Site that have been helpful, useful, or educational to you. If this page is your first stop – please explore the rest of our pages as we offer a lot of value for your visit. We provide all these services for FREE to the community at large.
Maybe you are a survivor, a caregiver, a healthcare provider who understands all to well the content here and could even add to the stories here with your own.
If you would like to offer HOPE (Help One Person Excel) by:
Giving a gift to keep this site running and helping its services remain FREE
Help us continue to bring awareness; or just support the cause
We are thrilled to announce another way of bringing support to you, and awareness to brain injury and polytrauma. We are pleased to introduce you to our Podcasts.
If you couldn’t get enough of the HOPE TBI website, Blog, or Support Groups… you are going to love listening to our Podcasts.
If you are someone that has difficulty reading, or is on the go and no time to peruse web pages, you are going to love the convenience of listening to our Podcasts.
If you are new to HOPE TBI, then welcome. We have a lot of support to offer you through our many FREE services.
Please remember to leave a Testimonial to give us feedback. Do you like what you hear? Are you getting value from the content? What impact has HOPE TBI made in your life. We want to know.
Check out the story about a mom fighting for the life and proper care of her daughter who was hit by a car January 2021.
When doctors and therapists don’t have faith, sometimes a family’s love and prayers can work miracles.
Michelle Patnesky, the mom of 17 year old Hailee, takes us on a journey with her family as they traverse the system to advocate for their daughter who has sustained a severe brain injury and remains in the hospital.
Check out our newest story submission. at HOPE TBI www.hopetbi.com
Vera Quijano, a dance and yoga Instructor, who is now dancing to the beat of a different drum after sustaining a Traumatic Brain Injury after surviving a vehicle accident, where she was hit by a drunk driver.
I just want to say to all you Mothers’s, Step-mothers, Foster Mom’s, and Guardians fulfilling a role as a “mother” figure…..
I see you.
I see your love, your sacrifice, your devotion, your fierce advocacy, your struggle, your effort, your laughter, your tears, your disappointment, your celebrations, your resentment, your anger, your amazement, your exhaustion, your selflessness, and your commitment.
I just want to say to all you Mother’s, Step-mothers, Foster Mom’s, and Guardians fulfilling a role as a “mother” figure….
I hear you.
I hear your cheers, your jeers, your concerns, your focused topics, your questions, your accolades, your encouragements, your motivational speeches, your yelling, your frustration, your grief, your joy, your coaching, your mediation, your compassion, and your ongoing effort at communication.
I just want to say to all you Mother’s, Step-mothers, Foster Mom’s, and Guardians fulfilling a role as a “mother” figure….
Just Be You.
Be the best version of yourself each day, be that disheveled mess, be that organized detailed version of yourself, be true to your values, be that parent that can admit their mistakes, be that parent that lives by example, be a stay at home parent, be a working parent, be a disabled parent, be a retired parent, be scattered, be focused, be hard to understand, be easy to get along with, be the parent that lacks humor, or be the parent that can make your child laugh. Just be YOU.
You are who your child(ren) will remember long after they have grown and you are their influencers for good or evil, love or hate, bravery or fear, joy or sadness, loved or abandoned, condemned or celebrated. You are the beginning of their imprint on the world.
Thank you for being just who you are and adding to the fabric of our world with your ability to be THAT MOTHER.
Brain Injury Awareness Month Join the #MoreThanMyBrainInjury Campaign this March
The Brain Injury Association of America (BIAA) leads the nation in observing Brain Injury Awareness Month by conducting an awareness campaign in March each year.
The Brain Injury Association of America (BIAA) theme for the 2021 to 2023 campaign is More Than My Brain Injury.
Although the vast majority of people recover after a concussion (guess what? a concussion IS a brain injury)…….how quickly they improve, rehabilitate, and return to their daily activities depends on many factors. These factors include how severe their concussion was, their age, how healthy they were before the concussion, how they take care of themselves after the injury, and the resources provided to them regarding their aftercare/recovery process (this means being provided with proper directions, follow up, and educational information by good providers who know what they are doing).
Okay, we say “good providers”. I do want to say that brain science is changing and evolving on a daily basis. It may not be possible for your provider to know all the latest and greatest developments regarding brain injury recovery, so don’t be too hard on them. It is also difficult for the rehabilitation team of providers to know exactly how long a recovery will take, especially at the beginning. This is why it is called “practicing medicine” – not everything is certain or known. The more you know, the more you realize that once you’ve seen one brain injury you’ve seen one brain injury. This means that all brain injuries, and healing abilities from those brain injuries are different (even if they share similar symptomology). A “good provider” would be someone who advocates for their patient, or defers their patient to a provider with specialized training, or who acts as an active listener and guide through the recovery process (even if that means being willing to learn about new scientific breakthroughs and keeping up on their skills, and knowledge base around what they are treating you for). Is that clear as mud? LOL
Do not compare your concussion (brain injury) symptoms and recovery to that of someone else or even to any previous concussions you may have sustained. Each persons injury is different, and the symptoms of each brain injury(even when happening to the same person) may be different and require a different rehabilitation time as well.
It has been established time and time again that recovery is usually fastest in the early weeks and months after brain injury. In the first few weeks after a brain injury, swelling, bleeding or changes in brain chemistry and physiological aspects of the brain are often affected, and affect the function of healthy brain tissue. The fastest improvement usually happens in about the first six months after injury. During this time, the injured person will likely show a vast array of improvement and may even seem steadily be getting better. The person continues to improve between six months and two years after injury, but this varies greatly for different people and may not happen as fast as the first six months. It is important to note though that while improvements slow down substantially after two years….additional healing and progress may still occur many years after injury. Also the opposite is true as well. A person who appears to be recovered or rehabilitated may not experience affects or manifestation of their injury until years later.
There are some poignant things to keep in mind regarding recovery from a brain injury.
If you suffered from anxiety or depression before your head injury, it may make it harder to adjust to the symptoms of a concussion (brain injury)
If you already had a medical condition at the time of your concussion (such as chronic headaches or chronic pain), it may take longer for you to recover
Receiving another concussion before the brain has healed can result in brain swelling, exacerbated symptoms, permanent brain damage, coma, or death – especially in our youth. You should therefore avoid activities that could cause you to jolt, bump, hurt, or cause a blow to be made to your head.
If you are a woman (female) it may take you longer to recover and you may have more severe symptoms that your male counterparts.
Numerous Concussions (brain injuries) over time may cause you to have ongoing serious long-term problems, including chronic memory challenges, difficulty with concentration, persistent headaches, and occasionally, diminished fine motor/physical skills (such as keeping the ability to stay balanced or walk in a straight line).
After reading all this, the question presents itself as,
“Great! Then what things CAN I do to improve my rehabilitation process?”
After all, that’s why you are here to see what that burning question will reveal, right?!?!
Neuro Optometry
1. Vision Testing –
I don’t mean like your typical eye doctor or optometrist/ophthalmologist that you would see to get your vision tested for glasses. or your glasses prescription adjusted. They don’t have the specialized training for the help you may need. I am talking about seeing a Neuro-Ophthalmologist/Optometrist (yes there is a difference). A Neuro Optometrist is trained to diagnose and treat neurological conditions that negatively impact the visual system. A Neuro-Ophthalmologist is a medical doctor that specializes in the diagnosis and treatment/rehabilitation of neurological conditions adversely affecting the visual system and specializes in neurology AND ophthalmology.
They specialize in visual problems that relate to the nervous system (brain injury, stroke, Parkinson’s disease, multiple sclerosis, and diabetic neuropathy). They help patients rehabilitate their vision with specific visual exercises/eye-training exercises that rewire the brain (neuroplasticity). These exercises can be done in the office during a scheduled appointment or at home with the aim being to reduce symptoms and promote visual recovery. These exercises are designed to improve balance, gait, visual information processing, cognitive skills, visual memory, motor skills, double vision, tracking/scanning problems, inability to focus, loss of central vison, strabismus (eye turning), convergence insufficiency, visual field loss, issues with depth perception, etc.
They may also, for some patients, prescribe specific optical lenses called prisms (prism glasses)
The treatment from this may last weeks, months, and for some patients – years.
Hearing issues are often overlooked in polytrauma patients because of other visible life threatening injuries that often take medical precedence/priority. However, hearing loss may mask or confuse getting a correct diagnosis for other injuries. Some patients have been diagnosed as being unresponsive or uncooperative when it was their hearing that was affected. Issues with the ear can result in problems related to balance, hearing loss, dizziness, vertigo ( the most common vertigo being benign paroxysmal positional vertigo), tinnitus (ringing in the ear), chronic nausea, and headaches. While some of these changes are reversible, others are not. This is the importance of getting auditory testing completed as soon as possible after a head injury.
Dizziness is believed to occur in 40-60% of people with traumatic brain injuries. The ear is also the organ that is the most susceptible to blast exposures. The extent of ear damage from a blast depends on a multitude of factors (size of blast, environment, distance from blast, orientation of ear canal to the blast, open or closed area during blast). The most common injury from a blast is a ruptured eardrum (tympanic membrane). There are also cases of traumatically induced Meniere’s Disease.
Hearing loss as a result of brain injury causes damage to the inner ear or because there is damage to the brain that produces sound. Auditory problems could be mistake for signs of cognitive deficits attributed directly to a brain injury. Hearing loss also exacerbate the social, emotional, and cognitive affects of the brain injury. It is possible to have cognitive affects related to brain injury AND loss of hearing at the same time.
Auditory symptoms may include difficulty understanding speech, especially when there is background noise; difficulty locating sounds (knowing where the sounds are coming from); hyperacusis (extreme sensitivity to sounds); tinnitus (ringing in the ears with no external source of the sound); conductive or sensorineural hearing loss ( damage either to the tiny hair cells in your inner ear – known as stereocilia, or to the nerve pathways that lead from your inner ear to the brain); distorted hearing, etc.
3. Speech Therapy –
Brain injuries can cause speech, language, thinking, and swallowing problems. Speech therapists treat all these conditions
Types of issues treated are dysarthria (when the muscles you use for speech are weak or you have difficulty controlling them causing slurred or slowed speech that can be difficult to understand), aphasia (impairment of language, affecting the production or comprehension of speech and the ability to read or write), improving cognitive communication skills, and improving memory
Goals in treatment by a Speech Language Pathologist (SLP)/speech therapist is to help the person speak more clearly; express thoughts more effectively; improve problem-solving, planning, and organization skills; improve speech to make it clearer; reading comprehension skills; improvement of memory using various tools (calendars, notebooks, to-do lists, post-it notes, planner, white boards, etc); learn ways to swallow safely; work on social skills through reading and social cues, etc.
4. SPECT CT –
CT and MRI scans provide detailed information on the anatomical structure of the brain. Brain SPECT imaging reveals the function of the brain by measuring blood flow.
Functional brain imaging is not considered a stand-alone diagnostic tool. While there are varying levels of acceptance among the neurological and psychiatric conditions, the science and technology have been research for decades and there are hundreds of published research studies utilizing SPECT for the evaluation of the various conditions.
Rest and proper sleep is very important after a concussion because it helps the brain to heal. Ignoring their symptoms and trying to “tough it out” often makes symptoms worse. Physical and cognitive rest is often recommended, however this varies greatly depending on the health of the brain prior to the injury, as well as the force sustained.
These activities, patients are advised by healthcare providers to rest from after a brain injury include: reading, using a computer, watching television, playing video games, or working on school assignments. For many people, physical and mental rest until symptoms subside is the only treatment needed for a concussion or other head injury.
During the first 24 hours, the brain needs as much rest as possible, including minimizing mental, and physical stimulation.
After 24 hours, if the injured is symptom-free, the injured person may begin the “relative rest” progressive protocol. Relative rest refers to avoiding any mental or physical activity that provokes the concussion-related symptom (for example if they participate in a physical activity and it increases symptoms, then stop that particular activity)
Each day a person can add more mental and physical exertion, as long as their activities don’t provoke any concussion symptoms. It is advised to avoid any strenuous exercise for a week or so. If you want to keep exercising, try to keep it light. If you’re a runner, for example, try walking. It’s also best to avoid any heavy lifting for a week. Moderate activity over the long term helps reduce effects of depression, feelings of isolation,
Regardless of the severity of your concussion (brain injury), you should be symptom-free before returning to normal activity, and your condition should be carefully monitored by your doctors.
“NEVER GIVE UP ON A HEAD INJURED PATIENT. – Recovery Occurs for the rest of a person’s life. Give people the type of treatment that they deserve. ~David Hovda, PhD“
That is seven years since the accident that rocked my world and changed everything forever. Seven years since becoming the walking dead to the actually breathing and eventually living.
There is no culture in the history of the world and no religion where the number seven is not a powerful and positive number.
The number seven is a number that represents and symbolize introspection, inner wisdom, truth, and the origination of life. It is said to represent security, safety, rest, and is considered lucky throughout our history and through many civilizations.
Seven is known as the number of total completeness and perfection – most often related to a spiritual direction, though the physical part cannot be ignored or discounted either. It derives much of its meaning from being tied directly to God creating the world, where the world was created in six days and God rested on the seventh day – creating the foundation of the seven-day-week we use to this day (for those that believe in that line of thought). The number seven is also featured in the Book of Revelation (seven churches, seven angels, seven seals, seven trumpets, and seven stars). The Koran speaks of seven heavens and Muslim pilgrims walk around the Kaaba in Mecca (Islam’s most sacred site) seven times. In Hinduism there are seven higher worlds and seven underworlds, and in Buddhism the newborn Buddha rises and takes seven steps. There are also the 7 deadly sins (pride, greed, lust, gluttony, envy, anger, sloth) and the 7 virtues of the spirit (chastity, temperance, charity, diligence, patience, kindness, humility OR also known as faith, hope, charity, fortitude, prudence, temperance)
Most of us have even heard about the seven wonders of the world, so seven is special to the global community as well. In fact, regarding every day life, studies have shown that most people can retain roughly seven items of information in their short term memory ( a real challenge with a brain injury let me tell ya). That is why phone numbers in the U.S. and many other countries tend to have seven digits (not counting the area code part of the number).
In fact, even when focusing on healthy sleep hygiene, it is recommended to get seven hours of sleep (less than five or more than nine and your risk for heart attack, stroke, angina, and a host of other non-restful issues increases).
Over the last seven years I have really learned to see obstacles and limitations as opportunities and a reason to really lean on HOPE and embrace faith and allow myself to BE hopeful. To give permission to myself to accept a new type of paced existence. But what does that REALLY MEAN…to have HOPE?
This does not mean that I was positive all the time. I can tell you that! Oh no, far from it. See, HOPE does not necessarily equal optimism or positivity. Sure optimists are often more positive than those that are caught up in dark moments/thoughts, or with overwhelming feelings of defeat and depression when faced with a “new normal” where they literally have to learn everything again. However, even the most pessimistic/negative person can have HOPE for things to be different or improve. I can personally attest to the facts that there have been many dark moments/thoughts over the last seven years. Yet being able to hang onto HOPE, hang onto the belief that I was here for a specific reason (even though I didn’t know what that was) and then making the effort to LIVE and embrace my life in every form it came to me in became my focus and continues to unfold as my reality.
This day is spiritually significant to me. It is physically significant to me. This day is emotionally significant to me and I am pleased to be able to take another breath….to reach another goal……to live a new dream and embrace new aspirations and possibilities. I am pleased to be guided by Faith, HOPE, and LOVE. I am pleased to be able to FEEL pain, FEEL elation, FEEL defeat, FEEL supported, FEEL misunderstood, FEEL heard, FEEL sadness, FEEL happiness, FEEL lost at times, and FEEL accomplished.
I am grateful to be allowed to have an avenue to share my journey with all of you and HOPE I can offer some measure of HOPE for someone who may end up reading this today.
So happy RE-BIRTHDAY to me. This is the YEAR OF THE SEVEN. The year I loudly embrace that special introspection, inner wisdom brought forth, speak my truth, and continue the celebration of life. I accept what seven has to offer: security, safety, rest, and while pacing myself, cherishing how lucky I am to continue to rewrite my own history. I open my arms to the Universe and to my experiences and hold hands with HOPE, while living in the moment and looking forward to the future, while building on that visualization.
Grateful for another blessing and another opportunity to draw in breath one more time.
9 Essential Resources for Migrant Workers Affected by COVID-19
At Hope TBI, our mission is to offer guidance and support to those affected by traumas of any kind. This includes physical, mental, and emotional traumas sustained before, during, or after your migration to the United States — or as a result of the novel coronavirus pandemic. As such, the nine links below will connect you with the different resources that may be available to you amid COVID-19 — especially if you’re facing deportation, struggling to find work, looking for medical testing, or need help putting food on the table.
Medical, Unemployment Insurance, and Employment Resources
These three resources will help you to understand your rights as a migrant worker during COVID-19 — and find new work opportunities if you’ve lost your job.
Understand the rights of immigrant workers during COVID-19, including your eligibility for unemployment insurance payments and free coronavirus testing.
Learn how to protect yourself during the pandemic, where to get tested if you suspect you may have COVID-19, and what to do if you’ve lost your job or had your hours reduced at work.
During the coronavirus crisis, migrant and undocumented workers can benefit from the following financial assistance programs.
Explore the different immigrant response funds that may be available to you and your family during the pandemic.
Contact your state’s Social Services Agency to check your eligibility for food, cash, or child care assistance.
Locate a food bank near you if you’re struggling to put food on the table due to job loss or any other reason.
Legal Resources
Whether you’re facing deportation or need one or more legal documents translated into your native language, these three resources can help.
Visit Informed Immigrant to find a complete list of regional and national resources for immigrants during the coronavirus crisis. You’ll find resources on financial assistance, mental health, healthcare, education, housing, and more.
Look for top freelancers to help with everything from translating and understanding legal documents to handling the legalities of deportation proceedings.
Facing deportation but can’t afford to hire a lawyer? Look for free or low-cost legal assistance.
The coronavirus pandemic has been devastating for the U.S. economy, and billions of lives have been disrupted in one way or another. With the nine resources above, hopefully you’ll have all the information you need to find new work opportunities, get tested for COVID-19, obtain legal counsel, and make ends meet during this unprecedented time.
If you have found value in this Site, in any of the content, any of the stories you have read, learned any information that you didn’t know before, felt validated, felt hopeful, appreciated the vast resources provided, can relate to anything you have read, or listened to in these pages, then this is a Call of Action for you.
Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:
This is a long time coming. I have finished my educational training as a Certified Holistic Life, Career and Executive Coach. I am specializing in Transitional Life Coaching, Brain Injury Recovery Life Coaching, and Disability Life Coaching.
I work with a diverse array of clientele from the general public – including medical patients, caregivers, providers, soldiers/veterans, business owners, executives, public officials, professionals, entrepreneurs, LGBTQ, parents, older Teenagers, and others from around the world through virtual connections.
My training incorporates holistic coaching techniques, traditional coaching methods, Brain Based coaching, Ontological coaching, Emotional Intelligence (EQ) coaching, Neuro Linguistic Programming (NLP) coaching, and Positive Psychology coaching.
Also, I am pleased to offer Medical Advocacy Consultant services to those looking to have a bit more support on their rehabilitative journey. Please see the website to get more information on these different services.
Some of our readers may think to themselves why is all this focus being put on Black lives…don’t all lives matter?
Saying Black Lives Matter does not mean other lives don’t matter. Not at all. In fact, saying All Lives Matter (though coming from a good place for most who embrace that term) misses the crux of the Black Lives Matter movement. Saying “All Lives Matter” pulls the attention away from Black Lives, who are the ones that are and have been heavily discriminated against for generations.
Black Lives Matter is a rallying slogan/anthem that speakes out about police brutality and systemic racism. It calls for a shift in statistics where Black people are twice – three times more likely to be killed by a police officer while unarmed, compared to a white individual. As a nation we need to pay attention to all of our races and cultures equally and stop acting like Black Lives are devalued in some way. Saying “All Lives Matter” diminishes and dsicounts the focus on the violence and discrimination Black individuals face every day. Black Americans are disproportionately impacted by not only police violence, but systemic racism. By saying Black Lives Matter, we are saying that Black Lives Matter as much as White Lives.
We support racial justice and we support equality.
Examples below of the difference between saying Black Lives Matter vs saying All Lives Matter:
If you see someone’s house on fire getting destroyed, you don’t stand there and yell at the fire department to put water on your house that’s not burning because you have a house too. No, you focus on the emergency in front of you at that moment and give everything you got to save that house and protect the people in that house that is burning.
Giving attention to the burning house is not saying your house doesn’t matter. It’s not saying your life or all the other houses and lives in the neighborhood don’t matter. It’s saying we need to focus on what is burning right now and not ignore this fire because their lives matter too.
~compiled based on a comic strip by Kris Straub
If you see a person on the ground who fell and cut their knees open and they are bleeding profusely and people are trying to help put pressure on the wound to stop the bleeding until help comes….
You don’t stand there and yell at them saying “Hey I have knees too, in fact I have two of them – what about my help…what about my knees?”
No….you focus on the person that’s bleeding and needs that lifesaving help in that moment. You triage and prioritize.
That doesn’t mean that if you may injure your knees in the future or have injured your knees in the past that your knees don’t matter. What it means is that the knees that are bleeding now need the most immediate attention because those bleeding knees matter too – and are more emergent to take care of now in this moment….not just yours.
Kim and Caren discussed, reaching out and staying connected during this difficult time in our history. We discussed tips and ways to stay connected.
We took callers .. Interested in hearing how our listeners are coping with the “New World” and their thoughts, fears, feelings.
This show is a gathering place for anyone seeking recovery from the challenges of life on life’s terms. We discuss useful tools that have helped us lighten the load, of our journey through recovery. This is a “we” recovery program, because it is in the “we,” that we find the new “me.”
We focus on the four A’s of Recovery: Awareness, Acceptance, Action and Adaptation. This is a place for survivor’s striving to become thrivers, which takes a large dose of Warrior!
Hosted by Kim Justus, author of In a Flash: Miracles Here and Beyond found at inaflash.org & “Like” at facebook.com/inaflash.org Co-Host is Caren Robinson found at: hopetbi.com
I wanted to reach out and share our latest and greatest page with all of you. It is our Reviews and Testimonials page.
If you are seeing this message in your email you have subscribed to our email notification list. That means you care enough about our content to want to be notified when we post something new.
If you are coming on this Blog post by scanning our Site, please take time to also leave your review and feedback after exploring a bit.
We would be thrilled and grateful if you would take a few moments to type up a review or feedback about our website and submit it in the comment section of our new page.
March is Brain Injury Awareness Month. Check out our recent Radio Show with Caren Robinson and Kim Justus as Co-hosts.
Kim and Caren will be discussing the basics of Brain Injury in an effort to raise up the understanding, as we begin Brain Injury Awareness Month. Among the topics discussed will be: Mindfulness Techniques, Meditation, Positive Psychology, EMDR and other holistic techniques. Building bridges and synapses the Non Pharma way! In keeping with my shows this month .. We will have more give aways .. Marchtacular!! One survivor, supporting another. Every show has a promo give away – Listen to win!
This show is a gathering place for anyone seeking recovery from the challenges of life on life’s terms. We discuss useful tools that have helped us lighten the load, of our journey through recovery. This is a “we” recovery program, because it is in the “we,” that we find the new “me.”
We focus on the four A’s of Recovery: Awareness, Acceptance, Action and Adaptation. This is a place for survivor’s striving to become thrivers, which takes a large dose of Warrior!
Okay….as an advocate for patients with brain injuries and those going through transitions in their life….part of that advocacy and role of consulting is being authentic and realistic as well. While I have compassion for what Biden is going through health-wise….I also must be pragmatic and realistic about what we as a Country are watching and a lot of America is missing.
We are watching in Biden a man struggling with brain changes that make him inept for the role of President of the United States. He is losing time, memory, has numerous bouts of aphasia and an obvious onset of what appears to be dementia. While he may go on to live many more years and contribute to society in other ways……the decline is palpable and not representative of what our Country needs or requires of a Commander -in-Chief.
Biden is NOT someone that should be in a role that requires strong mental faculties to run this Country…..he absolutely can not win against Trump or any other Republican candidate for that matter.
Bernie is our only hope at this point to have a fair, constructive, and challenging election in November. It won’t be a challenge if the DNC foolishly allows Biden to continue on. Biden will lose and should lose as he is just as dangerous for our Country as is Trump.
I hope Bernie pulls out a win to face off against Trump. I hope there is not a Baker convention that picks someone less qualified or not even in the running…as the Superdelegates would surely do….
We are facing a historical and pivotal shift in our Country and have been for quite sone time I only hope it shifts in the way that saves our Country and its democracy….not destroys it.
Come and Listen to our recorded Radio Show called Recovery Now with Kim Justus and Caren Robinson as we talk about Love, Sex, and TBI – Beyond the Chocolates.
We would love your feedback. Feel free to share the link and start a dialogue.
Sexuality is one of the most complex aspects of life but, the sexual lives of people with disabilities have been disregarded and stigmatized. As a result, sexuality as a form of pleasure and an expression of love is not taken into account or even recognized for individuals with disabilities.
Sexual expression is influenced by cognitive and emotional processes and is dependent on functioning anatomical and physiological systems, in other words, our brains control our sexual organs and responses.
Before resuming sex with a partner, boyfriend, girlfriend or spouse, talk about it with your doctor or therapist and be guided by their advice. Make sure you are clear and talk with your mate about your expectations, fears and feelings, including consent. Communication is key! Remember to not put too much pressure on yourself, focus on pleasure and not technique. You may need to change your same old lovemaking style and experiment with other sexual activities which can include
oral sex and mutual masturbation
utilization of sexual aids/toys/furniture
to increase intimacy, concentrate on boosting the romance in your relationship by offering lots of affection, complementing and saying nice things to each other and celebrating big and small occasions.
Importance of safe sex
After a TBI, it is just as important for you to protect yourself from unplanned pregnancy and from sexually transmitted disease as it was before your injury. Even if a woman’s period has not returned, she can still get pregnant. Here are some tips to help with birth control and protection from sexually transmitted disease.
Do research to help figure out what method of birth control and protection from sexually transmitted disease are best for you.
Because of changes in thinking abilities, it may be harder for you to remember to use protection or to remember to take it with you.
You can plan ahead by always carrying a condom or other method of protecting yourself and your partner.
For women who use birth control pills, or a device that must be replaced, using a calendar or alarm on a smart phone can help you remember to take the pills or change the device.
If you are unsure whether your partner has a sexually transmitted disease or has been intimate with others who have such disease, it is safest to use a condom.
If you have engaged in any risky sexual behavior, one of the best things you can do for yourself is to get tested for sexually transmitted diseases and get treated if you test positive.
Consent should not be assumed
Each of us is responsible for making sure we have consent in every sexual situation. If you are unsure, it is important to clarify what your partner feels about the sexual situation before initiating or continuing the sexual activity. Consent should not simply be assumed by:
Body language, Appearance, or Non-Verbal Communication: One should never assume by the way a person dresses, smiles, looks or acts, that they to have sex with you.
Dating relationships or previous sexual activity: Simply because two or more people are dating or have had sex in the past does not mean that they are consenting to have sex with you.
Marriage: Even in marriage, a person should not assume they have consent for sexual activity. Marital rape is as serious as any other sexual assault.
Previous Activity: Consent to engage in one sexual activity at one time is not consent to engage in a different sexual activity or to engage in the same sexual activity on a later occasion.
Silence, Passivity, Lack of Resistance, or immobility: A person’s silence should not be considered consent. A person who does not respond to attempts to engage in sexual activity, even if they do not verbally say no or resist physically, is not clearly agreeing to sexual activity.
Incapacitation: Alcohol consumption or use of other drugs can render a person incapable of giving consent. Alcohol is often used as a weapon to target individuals and is used by perpetrators to excuse their own actions. Additionally, Michigan Criminal Sexual Conduct laws apply to a perpetrator regardless of whether or not they were drinking. It is important to remember that sexual assault is never the survivor’s fault, regardless of whether they may have been intoxicated.
The term “sexual assault” means any unwanted, nonconsensual sexual contact of any kind (including kissing) obtained through the use of force, threat of
force, intimidation, or coercion.
Rape is unwanted, non-consensual sexual contact that includes penetration (i.e. vaginal or anal penetration, oral sex, and genital touching) obtained through the use of force, threat of force, intimidation, or coercion. 18% of all rapes and sexual assaults are reported to be committed by strangers, which means that most of these crimes are committed by someone the victim knows, is close with or related to (according to the 2017 Bureau of Justice’s).
Myths About Disability and Sex
Disabled people can’t have sex.
Disabled people have to pay for sex.
Disabled people aren’t sexy.
Disabled people don’t want or need sex
Disabled people only have kinky sex
Disabled people can’t have sex
Disabled people only have sex with other disabled people
Disabled people can’t have kids
Disabled people shouldn’t have kids because they can pass on their disability
If you have sex with a disabled person you will catch what they’ve got
Disabled people are a burden on their partners
People living with a disability can’t have “real” sex
Disabled people need protection, like kids
Disabled people have more important things than sex to worry about
Disabled people are brave and courageous to try sex (no, it’s just adapting to a lifestyle)
All persons in wheelchairs are chronically ill, frail, or sickly
Facts About Disability and Sex
People with disabilities can be sexual and enjoy sex
Some people who use a wheelchair can still feel “down there”
Sex is not just all about each others “privates”, it’s about intimacy as well
Mobility aids can be a fun addition
People with a physical disability don’t just “lie there”
Disabled people can have sex and enjoy it
Disabled people sometimes choose to pay for sex like people who aren’t disabled
Disabled people are sexy
Disabled people can have sexual desires/needs
Disabled people can have kids and build families of their own
People with disabilities can identify as LGBTQ too
It can be very frustrating if your life is being negatively impacted by your memory loss and someone (often a friend, provider, or relative) who doesn’t truly understand your experience says, “Oh, I forget things too…”
You may hear some people say that everyone has memory loss, especially as we get older. To some extent that is a true statement. We all have moments where we walk into a room and forget what we walked in there for, or forget where we laid the keys down at. However, here is where it differs. Memory loss as a result of a disease process, injury, or due to the use of certain medications is different than the memory loss we experience as part of the natural aging experience.
Several conditions, other than aging can cause significant memory loss. Some of these may be reversible with treatment. Some are permanent, even after treatment. Regardless of whether reversible or permanent, if it is effecting your life in a negative way, or robbing your quality of life, you may find some of the tips below to be helpful in helping you manage the memory loss you or a loved one may be experiencing
Some examples of memory loss that are not included in the natural aging process are the following:
Brain injuries – traumatic or acquired (such as blunt force trauma, accident, encephalopathy, falls, blood clots, stroke, transient ischemic attack, aneurysm, medications, drugs, etc)
Result of brain surgery (all surgeries carry risk, especially surgeries involving the brain – examples may include shunts, removal of diseased tissue or tumors, repairing bleeds, repairing puncture or crushed wounds, etc)
Brain Diseases (like a tumor, hydrocephalus – fluid in brain, or other rare disorders) and other Diseases (like Huntington’s, Muscular Dystrophy, Parkinson’s Disease)
Infections of the brain – such as syphillis, HIV/AIDS, Lyme Disease, other viruses
Vitamin B1 or B12 deficiency – good nutrition is imperative for brain health
Hypothyroidism ( a common secondary condition that can be acquired after head injury and often undertreated; some can be hereditary and if left untreated can exacerbate symptoms)
Kidney or Liver disorders
Dementia/Alzheimer’s (may be acquired secondary to brain injury, inherited, or from other unknown processes)
Emotional Disorders – stress, anxiety or depression can cause forgetfulness, confusion, difficulty concentrating and other problems that interrupt the ability to function in daily life)
Alcoholism, smoking, or drug use
Sleep Deprivation – quantity and quality of sleep affect our memory processing
Here are 12 ways that may help you manage your memory loss in a more functional way, helping to maintain as much dignity and independence as possible.
Make a memory board (with important names and frequently used phone numbers). Hang somewhere visible, so it can be seen and utilized daily. Update the same day weekly or as schedules change.
Create a life story book, photo album or something digital that is labeled to help identify who and what is important to remember (people, places, experiences). Get assistance to from someone you trust (such as a family member or professional) to do this. This can include pictures, question and answer format, or whatever works for your particular needs. This serves as a dual purpose as well, as it can also be used by professionals or caregivers to understand more about you as well.
Cognitive stimulation. This involves activities and exercises that stimulate thinking, concentration, communication and memory. Utilizing brain exercise sites such as Lumosity , Constant Therapy, and CogniFit Brain Training; play strategy games (like cards, checkers, chess, crossword puzzles, word finds, puzzles); coloring, drawing, or listening to different types of music.
Utilize a reminder system (this may include calendar, white boards, chart on the wall). It could be color coded as well (so a different color for each person or different color for each appointment on schedule – just make sure you use same color each time you do the schedule). Using A Planner or a Calendar App? – write down things right away – without exception. Always keep the planner with you wherever you go. If you get a call about an appointment, write it down IN THE PLANNER. If something changes in the schedule, write it down IN THE PLANNER. Label cupboards and storage containers as a reminder of where things are kept; label doors as a reminder of which room is which.
LISTS are your friends and great reminders (note: if you have trouble writing, use a voice recorder or dictaphone to make lists). Consider making permanent signs – even having them laminated, to remind you of things you need to do regularly (for example – sign by the sink reminding you to wash your hands before cooking or before leaving the bathroom). Make a list for things you are running out of and leave attached to the refrigerator door (this is a great way to make a grocery list you take to the store with you). Make a list of what bills are due on what days and how much each bill is that is due, along with how it is paid. Make a list of daily tasks that need accomplished. Make (or have someone make) a checklist to hang by the front door that includes what you need when you leave (for example: purse/wallet, phone, phone charger, planner, meds, bottle of water, keys, sunglasses, ear plugs, jacket, etc). Use the checklist EVERY TIME before you walk out the door. This reduces chances of forgetting things.
Use post-it/sticky notes. You can use them anywhere in your home or personal workspace to remind you to do specific tasks (such as a sticky on a library book that has to be returned by a certain date, or start load of laundry today, etc).Once you have completed the task, it’s important to throw the post-it/sticky note away. This way you won’t accidentally redo what you already finished.
Use a mobile smartphone (cell phone). Many mobile phones have a built-in voice recorder. Use this to record information that you need to remember or add items to your virtual calendar. You could also leave recorded notes, play it back later, or review those notes at the same time each day. Also cell phones are great resources for text reminders, checking emails, and having access to a GPS (such as Google maps) to utilize to keep from getting lost. Use your phone to take picture of your whiteboard schedule that week so when you leave home you can look at the picture even if you aren’t at home to see it. Use an app to record incoming/outgoing phone calls (check your State or Country laws first though, about recording these in your particular location).
Medicine/Pill reminder box. This will help you see whether you have taken your medications for that day (this helps to prevent taking your medications more than once). Some models have am/pm, and other times of the day; some can be set to remind you when to take your pills, with an alarm, vibration or flashing light.
Use an alarm clock, a watch with an alarm, or a kitchen timer to remind you when you need to leave the house for an appointment, or when you have to check something cooking in the oven. Write down why you have set the alarm – so you know why it is going off. (I cannot tell you the number of times I have had an alarm going off and then sat there wondering why I set it. So notes are very helpful – put by the alarm)
Never leave the room when you are cooking. You may forget what you were doing and this increases risk of burning your food, burning up a pan, or causing a fire. Never leave the room when water is running in a sink or bathtub. You may forget about it and cause a flood.
Appointments and Meetings. In advance, make a detailed list of what you want to say, questions you have, agenda for meeting, etc. If you are going to a medical appointment, bring a pre-typed list to leave with the provider of all other providers/specialists (make sure this includes their addresses, phone numbers or contact information), all medications and their dosages (remember to list any herbs, supplements taking), and list of concerns. Record meetings or appointments to go back and listen to later and take notes from the recording.
Don’t procrastinate. Whenever possible, doing things when they’re on your mind rather than later so you don’t have to worry about forgetting them. Try to utilize the same routine every day as much as possible. Routine reduces chances of forgetting.
Open Letter to the President of the United States of America.
1/24/2020
Dear Mr. President,
Your role as a leader of the free world is the most important in the Republic, in ours….these United States and all her territories. Your role affords you the ability to maintain influence, direction, opinions, and historical precedence through each of your spoken words, deeds, and continued representation of various topics.
While I understand you are not a medical professional, nor have received any form of medical training Mr. President…you only need do a simple internet search on an internet browser of your choosing…. to read about the extensive life changing effects of Traumatic Brain Injury.
These medical facts are documented by a multitude of research/studies, medical professionals/experts, well respected organizations, survivors, and our very own Military.
Please understand, how recently, you painted an illustrative picture to the world about your seemingly misguided and uninformed statement about the lack of seriousness brain injuries cause.
Mr. President the potential life changing affects of Brain Injuries (also called Concussions by those not aware of the proper updated terminology) are VERY SERIOUS.
I was listening to your statements of ……..
[Mr. President] “No, I heard that they had headaches, and a couple of other things, but I would say, and I can report, it’s not very serious,”
[Mr. President] “They told me about it numerous days later, you’d have to ask Department of Defense, “I don’t consider them very serious injuries relative to other injuries that I’ve seen.”
“I’ve seen what Iran has done with their roadside bombs to our troops. I’ve seen people with no legs and with no arms. I’ve seen people that were horribly, horribly injured in that area, that war,” Trump said.
“No, I do not consider that to be bad injuries, no,”
Mr. President, I feel it imperative to provide you with the proper information on the campaign to bring global awareness to the effects of Brain Injuries. Awareness that even the White House seems to be in much need of….. so as to represent the dire importance of presenting the consequences accurately to the masses.
The effects of Brain Injuries can be long lasting or even permanent. While recovery and rehabilitation are possible, most people with brain injuries will face life challenges that will require them to adapt and adjust to a new reality where permanent physical or mental disability, and sometimes even death are the very real SERIOUS EFFECTS of their lives after sustaining that injury (or series of injuries). Even patients who appear to fully recover after treatment and rehabilitation may have some long-term symptoms that never go away or fully resolve. These changes may cause an inability to return to their life in the same capacity that they had before their injury.
Indeed Mr. President, injuries to the body, whether visible or not visible, can be equally life changing.
The statement you gave was partially correct in as one of the many symptoms of brain injury does include “headache”…..however there is so much more.
SOME of the other changes other than headaches include an alteration in:
an alteration in cognitive processes ( memory issues, distractability, impulsiveness, mood disorders, language, mental processing time, confusion, etc);
an alteration of senses (sight, vision, phtophobia, double vision, smell, taste, hearing, tinnitus (ringing in ears): aphasia (difficulty with talking or expressing ideas, understanding everyday language, and problems with reading and writing),
and development of PTS (post traumatic stress) and PTSD (post traumatic stress disorder) can also be present along with, or secondary to, the brain inury or polytrauma event(s).
[not an exhaustive list by any means]
Mr. President, despite the amazing advances in medicine, research by scientists, and active steps taken to develop treatment plans by our own Military; there are still more discoveries to be made and more work to be done.
Devotion of time and much needed funds, resources, and bipartisan support is still necessary to bring awareness and education about brain injuries to the forefront by not only you, but our other Leaders in our Government, private, and public sectors .
We must recognize this as a valuable opportunity to address this as what it actually is….a call to action about this – an International medical crisis.
We must figure out how best to treat those with Brain injuries, help them live their best lives, and be open to various methodologies and alternative sources of therapies that are allowed and covered by our insurance companies as to support the best outcomes.
Mr. President, you must know as soon as possible that despite early diagnosis and treatment of Brain Injuries, the fact remains that brain injury will be a life-changing experience for many patients.
So….in a word Sir….S E R I O U S !
HOPE for Life, Caren Robinson – United States Citizen Polytrauma and Brain Injury Survivor
Brain Injury Radio Announcement. Come join us in listening….
Toxic Providers have you down, confused and frustrated? Join Kim and Caren as they discuss Co-Morbidity and Mixing it up with TBI and PTSD – Wednesday – January 8th, 2020
To Access 7pm PAC/10pm EST Call 424-243-9540 or Click Link Below to Hear Live Show, and Afterward to hear On Demand Program
Well, yesterday was an intense day indeed. January 4th marked the 6th Anniversary of my Re-birthday, my second chance at life, and the opportunity given to me by circumstance to choose fighting for life or succumbing to death.
January 4, 2014 is a day that I often viewed as the worst day of my life, as it changed literally everything about my life. It robbed me…..of me. However, I have come to view it as one of the best learning experiences I have ever encountered, at least in this lifetime.
This day is a day of reflection. In a lot of ways, it is also a day of high anxiety and fear. It is like the gift that keeps on giving. I say that sarcastically and sincerely at the same time.
Sarcastically, as the injuries I sustained continue to evolve and change. The injuries overall are still improving, some remaining the same and in a chronic state, and yet others through their metamorphosis have created other challenges that continue to erupt into existence as times goes on.
Sincerely, as I have and continue to, learn so much about myself and those around me as time goes on. I began this journey not knowing what my future would look like or if I would have one. I still do not know what that future looks like entirely, however, I now have a vision of which direction I would like to head in. I have returned to schooling, training, and continue to educate myself. I educate others as much as possible about polytrauma and brain injury and I am braver with my ability to advocate for myself and others. I prioritize things in my life differently and feel gratitude for each breath and each heartbeat I continue to be gifted with.
I find myself continuously faced with my mortality and the mortality of those around me. I find myself wondering how the impact of my survival on this world, in my life, in the lives of my children and my family would be remembered. Each moment, and each action is a precious opportunity to build new bridges, experiences, and lasting memories.
Six years it has taken me to accept my new normal. Six years it has taken me to find a way of living that makes me feel like I am indeed LIVING. Six years of literally blood, sweat, and tears. Six years of laughter, pain, joy, and stepping outside of my comfort zones – not only physically, but emotionally and mentally. Six years of choosing life over death. Six years, that on some days only feels like yesterday. Six years, that on some days it seems like double the time has passed.
My go-to prayer/mantra is always, “God grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference”, and “I can do all things through Christ which strengthens me”. I will continue to make the effort to balance that wisdom with my experiences. I will continue to wrap my arms and heart around the experiences of others and give the best part of my daily life through authenticity to each opportunity.
While the waves of emotional turmoil level out, while the billows of frustration thunder through each attempt at moving forward, while the storms come and go, and the financial devastation doubles down….the whisper in the wind that keeps me going and guides me to to that warm sun on my face is the ever present force of HOPE and LOVE, and possibility.
Happy Anniversary and Re-Birthday to me. May each heartbeat take me into the next realm of discovery.
This time of year we reflect on what we’re grateful for. We’re grateful for the privilege to continue to serve you. Thank you for continuing to entrust us, support us, and support others involved with polytrauma or brain injury, by visiting our site, sharing it with others, and submitting your stories.
On behalf of the creator of this Web Site, Caren Robinson (survivor to thriver) and all those who support her in her rehabilitation….we wish you and your family a very Merry Christmas and hope for a joyous and Happy New Year..
I had the opportunity to co-host an online radio show LIVE.
We discussed “The Cost of Trauma on Recovery Now”. We were covering the cost Social Trauma vs Individual Trauma and shared a dialogue about our views and defining of terms regarding Trauma.
Something we didn’t have an opportunity to cover is the generational movement of folks not wanting to have kids at all or build their own families due to the potential exposure to Trauma, violence, or the eroding of society, our humanity, and the environment as a whole and how the current Trauma’s and experiences in our societies are impacting the future of humanity. It is imperative that as a collective consciousness we develop and implement ways to reduce, recover , and or eradicate as much Trauma as possible.
Please take an opportunity to share the link with those you feel will benefit from this topic.
Feel free to click on the link yourself as well and listen to the show.
remembrance (noun) – the act of remembering a person, place, or event; an act of recalling to mind; recalling a specific memory.
This coming Wednesday is September 11, 2019.
September 11, 2001 revealed heroism in ordinary people who might have gone through their lives never called upon to demonstrate the extent of their courage. – Geraldine Brooks
In 2001, Congress declared September 11 as the “National Day of Service and Remembrance”.
Well I did something magnanimous this past Wednesday evening. I had received an invitation to be interviewed on Brain Injury Radio by Kim Justus.
I took the plunge, and embraced the opportunity to share some of my experiences over the course of the last 5 years in regards to bringing awareness to Polytrauma and Traumatic Brain Injury on a International Radio Show. How exciting to be a part of something so deeply personal, meaningful, and far reaching.
Check it out…take a listen and leave a comment below. Let me know if there was anything on there you could relate to. Feel free to share this link with anyone you think would benefit from hearing its content. I’d love to get your feedback!!!
Some of the resources mentioned on the show were the following:
Audiology testing, SpectCT Scan, Medical Acupuncture, alternative Medicine, cognitive fatigue (neurofatigue), among other things….and the mentioning of the following groups:
Before the wreck, sounds did not bother me. Bright lights did not bother me. Not much of anything like that did…..
However, that all changed after the wreck thanks to a Brain Injury. That invisible injury altered so much of my life and how I perceived life. It still does.
I still find myself procrastinating doing things that have those loud sounds and bright or flashing lights attached to it. Often times I either avoid those activities altogether or power through knowing full well the cost it will take on my body afterwards….yet willing to pay the cost for the experience.
This is the first year since the wreck (5 total years now) I was able to actually look at and hear fireworks without my heart racing a thousand miles an hour with each boom, without having panic hang with me all night, without feeling like I was having a heart attack with each pop, and without wanting to puke from the brightness.
I had a slight body jolt with a few of them….but nothing like before. I slept HARD afterwards and a bit drained today…yet holding steady.
Sudden loud unexpected noises are a good way to light that panic/anger/anxiety button. Knowing the sound is coming makes it more manageable for sure. Being mindful and aware of my body and setting boundaries for myself is becoming more natural as time passes.
Memorial Day is a federal holiday in the United States Memorial Day is a solemn event, not a happy day or time. It’s a time to reverently consider the idea of sacrifice, to preserve the memories of those who died while serving in the United States Armed Forces, and to give thanks that they did so.
The holiday is observed on the last Monday of May. Memorial Day is a sacred time as we remember our fallen warriors by speaking about them, holding memorial ceremonies, visiting cemeteries, holding family gatherings, lending a helping hand to our living veterans, and participating in parades honoring those veterans. It is customary on Memorial Day to fly the flag at half staff until noon, and then raise it to the top of the staff until sunset
Taps, the 24-note bugle call, is played at all military funerals and memorial services. Originally known as Decoration Day, it originated in the years following the Civil War and became an official federal holiday in 1971. .
It is important for Americans to take time to remember the sacrifices that bought their freedom. Here are some ideas on how to celebrate this important American holiday:
Send a note of thanks to Veterans you know.
Donate to veteran charities or volunteer your time at a Veteran’s home or charity.
If you know someone who has lost a loved one in battle, offer to help with a household project or help meet a special need they have.
Visit a local cemetery and place flags or flowers on the graves of fallen soldiers.
Even if you don’t have any veterans in your family to remember and speak of, you can always learn of the lives of other past service members through memorials and museums.
Another way is to incorporate the colors of the flag into your wardrobe, and display a Memorial Day pin. It’s generally considered a poor choice to wear clothing with the American flag printed directly on it; the flag is meant to be flown, not worn; finding clothing that includes the essential colors and patterns is a great way to mark the occasion.
Fly the American flag at half-staff until noon.
Participate in the National Moment of Remembrance at 3:00 pm. Pause and think upon the meaning of Memorial Day.
Send a care package to deployed service members.
Unofficially, Memorial Day marks the beginning of the summer season.
Being a mother has been the best job in the world to me. I always wanted to be a mother…from a very young age. I felt capable, ready, and committed to being the best mom possible. I wanted to be, and often was, the supermom, who could seemingly do a little bit of everything at a moment’s notice. Then the wreck I was in changed all of that forever. It shook my confidence. It shook how I existed from one breath to the next; it shook every aspect of my life as a daughter, sister, wife and as a mother.
I have been a mother to foster children, stepchildren and biological children. I have been a mother figure to kids that never even lived with me. I have been mothering to kids I came into contact with. I am convinced that how we care for, love, and embrace our children is exactly what makes us a mother, no matter how those children came into our lives, or became our own.
After the polytrauma and traumatic brain injury, I was no longer the mother my children knew before that day. I was different. I didn’t even know who I was. I was injured, I was in pain and I was unavailable emotionally, mentally, and physically. I have heard stories about things I don’t remember – things I have allegedly said or done, most humorous, some horrible and embarrassing. I apparently was a horrible person sometimes, especially in the first year after the wreck. This was just bad mojo – cognitive changes, personality changes, and enormous pain from all my injuries. I was often in so much pain I couldn’t function at all. I was useless to everyone around me. I definitely couldn’t make effective and meaningful decisions. I couldn’t remember one day to the next or who had visited me, or what was said by whom. I couldn’t muster taking care of anyone else, let alone myself.
My outlook on everything, while hopeful, was also littered with confusion and a myriad of emotions I didn’t seem to be able to control. I noticed my mood was worse as the pain increased and for a long time just breathing or moving caused me pain. I slept A LOT. I couldn’t even force myself to stay awake. I wasn’t the mother I had always been. I was the mother fighting for life and fighting to come back to my family. I was a mother still inside, still to my children, still to the world who knew me as their mother. Yet I wasn’t at the same time.
My own mother took care of me. She bathed me, clothed me, fed me. My mother was there for my first steps as an infant and again as an adult as I learned to walk all over again. My mother was my caregiver. She didn’t have time to grieve. She became the needed mother role for my children. My husband and my mom were my pillars of care and support. I was fortunate to have such amazing support. Not everyone has a supportive system like that. Some days my mom was more of a mother to her grandchildren for a period of time than I was….than I was capable of being. I don’t like to dwell on that. I don’t like that this was her reality – however I am enormously grateful.
I realize that being a mother is an enormously different experience for every woman who ventures down that path, and the experience is different with each of our children as well. I am acutely aware of this. Not every woman wants or enjoys being a mother. Some mothers are not mothering at all. Some women abuse or neglect their children. Some women wish they never had children. Some are the opposite however and actively involved, readily available, completely vested, and doting.
My job as a mother is constant. Being a mother is a full time endeavor and is totally consuming, no matter how old your children are, or how many you have. No matter how old, how broken, or how healed you are as that mother. A mother sometimes worries for her children. A good mother desires to see her children succeed. It is frustrating and depressing when you go from full time, full speed ahead in parenting and life to an abrupt halt due to an injury that doesn’t even allow you to participate part time…if at all on some days.
Learning to embrace the new normal after catastrophic injuries is no easy feat. Most days it seemed impossible and almost always overwhelming. You would be amazed at how much the love of being a mother motivated me to give my best effort each day. Some days, literally the only reason I found myself able to face the day was because I knew my children needed me, were counting on me, and were hoping for my recovery. So in that regard, the kids helped save my life. They helped me stay motivated just by existing.
Some days are challenging still, though much better than in those first few years. Did you know that any women who are mothers take on additional caregiving for loved ones with disabilities or long-term care needs, beyond the work that we normally do to raise children or to fight through their own rehabilitation? This became the case for me when my mom developed encephalopathy and a resulting ABI (an acquired brain injury) secondary to being diagnosed with Anca Vasculitis. I then also absorbed some of the role as her caregiver. Signing documents in the hospital for procedures and care she needed when she was unable to do so for herself. I took on the role of caregiver and I wasn’t even ready to be back in my full role as a mother to my own children. That was a series of difficult transitions……for all of us. Yet we persevered. Survival was inevitable.
Did you know that the CDC reports that the average life expectancy for women is 81? Living to the age of 81 is nearly four years more than that of men. In fact, many women outlive their husbands. Some even outlive their retirement. Even those on disability. Older, single women face significant challenges in managing their own long-term care needs as well. If you add the extra job of being a mother to all that mix – you learn a lot very fast and you shoulder a LOT of responsibilities.
To be the best mom possible, I realized it was imperative for me to not just let go and let God; but to let go and let others. Let others help me, let others give rides to my kids, help my kids, help my family. Let my husband take on those responsibilities I had as a mom, that I sometimes didn’t have the energy to be present for.
I realized that being a supermom didn’t mean I had to do it all. Being a supermom meant I just had to be here to the best of my ability, to love my kids to the utmost, to voice my tolerances and intolerances in a different way. Being a supermom meant giving myself the freedom to recover at my own pace, and forgiving myself for not being who I used to be. Being a supermom meant being the best me I could be in each moment.
I still love being a mom. I still love hearing the laughter of my children. I love watching them sleep, hearing them play, and watching them grow. I still value being involved, present, all while being respectful of my limitations.
I am still a supermom. I just do it differently. Do you know a mom who is recovering from an injury….who is a caregiver….who is employed…..who is unemployed….who is on disability…..has her own children….or is a mother figure to the children of others….offer to help her out. Can you think of that mom out there who is struggling to do her best? ….Offer to shoulder some of her responsibilities. Appreciate her. Celebrate her as an invaluable contribution to the family as a whole. After all, that is what she is – invaluable.
Is that mother you? Ask for help. Love yourself. Forgive yourself for not doing or being all that you envision all at once, or still. Get involved in a support group, counseling, whatever it takes to help you face each new day and each new moment. You are after all….if you love being a mom….if you are go getter, a survivor, a brave face in a sea of thousands. If you are a mother giving her best effort….even if you aren’t able to do everything….you are still a super mom.
Happy Mother’s Day
~Caren Robinson – May 2019
Below are some articles and links I thought would be helpful to all those who have mothers, are mothers, are children of a mother with special needs, or are caregivers for mothers…..
Valentine’s Day has become very commercialized over the years. There seems to be a lot of social pressure to purchase things for those that you love. Pressure to “go out and do something together”. Pressure to “prove” your love with the largest gift, card, or elaborate reservation. Sometime’s though, for some folks, Valentine’s day is just another day, not different from any other.
However, if you are one of the folks who celebrates this day; one of the ones who gets all twitterpated when you think of what you can do for that special someone or group then this is an exciting day for you. There are things you can do though, to do something special without all the “fuss”. Your brain injury survivor you may or may not be interested in the social congestion and crowds that can fill the stores, restaurants, and traffic. This holiday can also bring a sense of loneliness, isolation, depression, and melancholy for those who are unable to participate the way they would like to, or with who they would like to. So sometimes just remembering someone can lift their spirits.
Valentine’s Day can be a magical time for couples who do celebrate this day, or even those we care deeply about – even those who we are not in a romantic relationship with. This day has become a day that we are reminded to celebrate love, passion, and belonging.
Valentine’s Day is the perfect opportunity for you to take the time to show that brain survivor person you know some affection, friendliness, and that you care for and value who they are as a person…..even if they are now a different person than they used to be.
If you are a solo flyer and have noone to celebrate, consider celebrating yourself and loving yourself for all that you are, all that you have been, and all that you are becoming. Self care is just as important, if not moreso than the care we give someone else.
Some economical ideas that won’t break the bank and add a personal touch to the day are as follows:
Write a note or “Valentine” with all the accomplishments, positive statements, love you feel, emotions that are positive, and progress your survivor has experienced in the last year. Deliver to them and consider reading it to them out loud if they have trouble with reading or comprehending written words. Otherwise, you can present it in any form you choose. Be careful not to use perfumes or scents on your letter if your survivor is sensitive to these.
Create a picture collage for your “Valentine” as a slideshow, powerpoint, or other program that they can open a file on and play, or that you have burned to a disc.
Create a Coupon book using construction paper, stickers, scrapbook materials, etc. Spare no creativity here. This is only limited by your imagination. Maybe some coupons could be “help make a meal”, “drive you to an appointment”, “write a letter to a provider for you”, “help you for a couple of hours with household chores”, “watch the kids overnight so you can get uninterupted rest”……you get the idea… Use gel pens, markers, crayons, or other art supplies to jazz it up a bit.
Make a positive quote booklet. Type or write up motivational quotes and put them in a binder or booklet form and present to your “Valentine” to give them something to refer to whenever they need a pick-me-up.
Provide a delicious treat. Whether store bought, or homemade, sometimes the personal touch of a box of chocolate, candy hearts with little messages on them, a home cooked meal they didn’t have to make, a plate of warm cookies, or something along those lines can be very special and send a loud message that you care about the little things – especially if you have considered their dietary restrictions or food allergies (if they have any).
Make a “treasure box of love” – you can include coloring books, crayons, word search, brain activity card games, board games, fidget spinners, sensory objects, puzzles, or things that you know they are personally interested in. You don’t have to go crazy here. This can be one thing or a lot of things. The thought is what counts the most on this one.
Set aside personal time for just you and your partner. This can be 5 minutes, 30 minutes or an hour. Whatever their tolerance is for this. Hold hands, snuggle, or just sharing space together without outside interference can be a welcome experience.
Create an Aromatherapy collection for your survivor if various aromas are a positive experience for them. This can include incense, candles, tinctures, essential oils, melting wax and warmer, etc.
Run a bath with bubbles, essential oils, or other things your “Valentine” may want to soak in. Help them into the bath, help wash their back, or perhaps play them some soft music while they relax.
Write a poem or a song for your “Valentine”. Sing to them or make them a video where you are signing, reading them a poem, or speech with them in mind.
Valentine’s Day is rich with historical developments over the years. There is really no wrong way to celebrate it. It’s also okay if you don’t celebrate it. However, for those that do – make it fun, make it safe, and think outside the box when working to do something special for your brain injured “Valentine”.
You may notice some changes happening to our Website. We are pleased to announce new pages coming to fruition and current pages receiving updates. So even if you have read a page before, check back for continual updates every once in a while. Also, you can check the Blog for announcements of updates as well.
Our current page updates for 2019 thus far, include:
We welcome information, articles, stories, and topic ideas for our website. We also welcome guest authors for a Blog post as well.
You can reach us at our CONTACT PAGE for more information. Please also let us know of any broken links you may come across. All work on this website and blog is done as a gift of love and is provided free of charge to the public domain.
~ An English-language metaphorical idiom for an obvious problem. difficult situation/decision, or risk no one wants to discuss, or a condition no one wants to challenge. An unpleasant experience. question, problem, solution, or controversial issue which is obvious to everyone who knows about the issue, but which is deliberately ignored because to do otherwise would cause great embarrassment, sadness, arguments, or is simply taboo. ~
What is YOUR “elephant in the room”?
Is it an invisible injury or illness? Have you been diagnosed with a Traumatic Brain Injury?
Is it a Polytrauma you are recovering from?
Is it chronic pain?
Is it Survivor guilt?
Is it lack of sexual libido or change in your sexuality since your injury/illness?
Is it your inability to describe to others what you are going through or have gone through?
Is it the coping skills that you must use and choose to tell noone about?
Is it your bravery, your sheepishness, your courage, your fears?
Is it pride in how much you have acccomplished? How far you have come?
Is it depression, anxiety, or disappointment in your lack of progress?
Is it lack of confidence? Is it overthinking and overconfidence?
Is it your inability to return to the same type of work you used to do?
Is it your desire to return to work, yet unsure of what that picture looks like for you?
Is it caregiver burnout?
Is it provider fatigue?
Is it a source of deep grief, sense of loss, or mourning?
Is it something that you have put in your past and no longer wish to speak about?
Is it something you want to speak about, yet others are ready to move on and not speak about it?
Talking about the things that are bothering you can help clarify them and put them in perspective. In never addressing the “elephant in the room” a general uneasiness, sense of frustration, stagnation, loneliness, and untrustworthy environment can breed a life of havoc and confusion. Break your silence and be blunt in a productive manner. Perhaps even seeking out a therapist to assist you with working through some of the adjustments would be advantageous for you.
Avoiding an issue causes more harm than good….always. When discussing an issue, it is imperative to remain as calm as possible. Using anger or yelling to communicate can absolutely make things less constructive – especially if you are having trouble finding the words to say and the best way to deliver them. Being objective can be super tough. However, it can be helpful if you make a list of facts. Now, when I say facts. I am not speaking about how you feel, how you think, or what your assumptions are. I am talking about facts that you can prove with empirical evidence, historical evidence, and a paper trail.
Keep in mind when talking about that “elephant in the room” that sometimes the very people who need to hear the topic being talked about are the least receptive to hearing it. That often means that person might even be you. Being receptive to talk is important. It is equally as important to actively listen. Support from others that share the same or differing opinions about the issues you wish to speak about will make it not about you, but about the issue and how much it impacts others who have gone through the same thing, or are currently experiencing the same challenges. Support groups (even if they are online) can be an amazing source of support, ideas, and encouragement.
A resolution or plan is something that is accomplished over time. Open communication without apathy, fear, or hopelessness is an integral part of finding what works best for you. Keep an open mind and be willing to have multiple conversations about that “elephant in the room”.
Taking that challenge which is deliberately ignored and opening up a dialogue about it, changing whatever it is that is holding you back from being your best self. This is how to make progress, step outside your comfort zones, and switch an unspoken taboo topic into a healing process.
Those recovering from injuries or trauma are often mired by numerous appointments, sorting through providers who may or may not know how to deal with their injuries, symptoms, or chronic pain.
Those recovering, while blessed to have survived are also overwhelmed with new “normals”, new limitations, new or ongoing financial devastation since their injuries, and also new opportunities for growth. Those recovering have lost friends, colleagues, and family members who couldn’t “handle it”, “understand”, or who simply just kept moving on with their lives while the one recovering was caught in a time warp of change and foreign experiences.
You have been through a lot this year and I hope it ends with a smile on your face. I hope that happiness is able to fill your heart and life more often in the coming year. Love and time is a great healer. I encourage you to be gentle and kind to yourself and those who strive to help you out, no matter how small the acts of kindness you receive are.
Slow down a bit and work on not overthinking. Find time to rest your body and your mind. Healing comes with rest and time. Healing also comes from pushing forward and keeping the body and mind moving. The key is learning to set personal limits, boundaries, and pacing yourself.
Set a goal. It doesn’t matter if it is a small goal or a larger more challenging goal. Take small steps towards your goal. Each step is one step closer to achieving the end result, whatever that may be for you. Share yourself with others. Never give up HOPE and belief in the greater good. Allow yourself to see the light despite all of the darkness.
Someone, somewhere, is sitting in the shade today because someone planted a tree. Pay it forward by planting one small kindness at a time, and help cast the shadow of your fears and limitations behind you.
I wish you enough. Enough love. Enough pain relief. Enough progress. Enough happiness. Enough joy. Enough progress. Enough life. Enough of all that you need in the New Year.
What a normal scapula should look like when not fractured or damaged.
So I have been very fortunate to have survived many rare injuries from the wreck. My journey continues with a new life plan and growing gratitude.
I am also fortunate to have my patient story spotlight featured in the 2nd Volume of “The Scapula Institute’s Newsletter”
Scapula before plated – dark areas in center of scapula are broken and or missing bone
Take a moment to read and share this with as many people as you can. The more we can bring awareness to Polytrauma and the amazing medical breakthrough outreach that the Scapula Institute does, the more lives can be impacted and saved.
Many thanks to Dr. Peter Cole and his trauma team for all of their efforts on the behalf of bettering the world one patient at a time.
The spouse is often forgotten. Their role as caregiver is not fully appreciated by those not experiencing it. It is easy for folks outside of the experience to forget Rick in all this too as he is healing along with me – he is BRAVE and the most amazing husband and father in the world.
Let’s give a shout out to our Caregivers, the warriors and the silent walking wounded.
For the first several months after my TBI you couldn’t have paid me to stay awake. I was always sleeping – in between bouts of pain of course. However, I just could not seem to stay awake. I would think to myself, “Stay awake Caren”. Just couldn’t manage to do it, no matter how hard I tried.
I didn’t care where I was either. Sitting in the wheelchair, at a doctor appointment, during therapy, on the toilet, in the shower, trying to read, while eating, while drinking, while talking, typing on my computer, home or away I was constantly falling asleep.
Not only was I sleeping 12 hours or more a day I was also embarking on several “mini naps”. I attended 3 sleep studies in the first 18 months after the wreck. I eventually was diagnosed with Hypersomnia vs Narcolepsy. There was no history of Narcolepsy in my family or with me. Finally it was determined that this Hypersomnia was a result of my TBI. This was a fatigue so intense that simply waking up and having help getting dressed was enough activity to illicit another “nap”.
I would also sleep HARD. This often scared my family. By that, I mean that my family would try to wake me up for medication times, or for meals, or appointments. Sometimes they would call my name repeatedly, shake me, run a thumb up the bottom of my bare foot. Anything to get a response and I would soundly sleep through it all. Apparently, to hear them tell it. I slept like I was dead, not even a flinch. I lost the ability to hear alarms or get woken by one in the first 4 years. Once awake it would take a long time to get my head together, realize where I was, that I was okay, and what was going on in the moment. For the first couple of years I lost my ability to dream….or at least remember them. This was odd as I used to dream in living color before the wreck and remember ALL my dreams.
Medical appointments were agony. I was fatigued BEFORE I got there and getting out of the house took over an hour…on a good day. The level of fatigue felt AFTER the appointments was like a heavy weighted straw sucking the life out of me. I needed to sleep NOW or I knew I got grumpy fast. Often times followed by a wall of tears.
Keep in mind I still had numerous fractures as well for the first two years that went unhealed, so I was also in pain ALL THE TIME. I was not a happy camper. Trying to be positive took a lionshare of my energy as well. Add on to this multiple surgeries and recovery time just from that, and the clock on my recovery started all over again after each surgery.
Sometimes I would be talking to someone and it was daylight outside, I was propped up in my hospital bed at home and suddenly I would wake up, and it was dark outside. I was unaware I had even fallen asleep in the middle of a conversation and been asleep for hours. I would often feel confused, guilty for sleeping so much, and still exhausted.
From home I tried to keep up with emails, phone calls, communications with the schools, etc like I did before the wreck. Um, yeah…I failed miserably at these attempts. I would forget what I was doing, who I was talking to, what I was typing and it was a mess. I am amazed that most of all those same people still talk to me. I was so flighty.
Every emotional upheaval caused fatigue. I can tell you that there were a LOT of emotional experiences I was constantly wading through. I noticed I couldn’t read a book! This was upsetting as I used to be an AVID READER. I couldn’t do word searches. I kept trying, however it would make me puke. I could read information on the computer in small doses, often falling asleep while on it. I was in a world I did not recognize. Even the lights on the ceiling in the store or at the hospital made me feel fatigued. My eyes burned from the lights. Even at home the lights bothered me. I spent a lot of time with a neck pillow covering my eyes or my head covered or buried in a blanket in a low lit room. If the room was dark…even better. I couldn’t even listen to the TV in the first few months. It took almost a full year before I could watch a one hour television show without feeling overwhelmed. I remember there was just to much movement on the shows. There was too much to look at and it made me nauseous. So the family spent many a movie night with me sequestered to my hospital bed drinking up the dark quiet and solitude. I was also dealing with horrendous headaches, dizziness, and room spinning feeling. On top of that the room would slant by the end of the day. I always felt like everything was “crooked”.
I remember some frequent moments I would stare at words unable to read them. I have always loved words, their definitions, and studying language. My favorite board game USED TO BE Scrabble. I even won spelling bees when in school. So for me not to have a grasp of language and words has been the biggest loss for me. It would take me a while to figure out what the words were, what they meant. It helped to have my family read things to me, especially medical releases – where there were LOTS of words. I would hold a pen and not remember how to write. In fact, where I ALWAYS used to write in cursive before the wreck, I now had hen scratch printing. To this day I still print now. It’s bizarre. I will say it has improved quite a bit in the last 4.5 years though. I had trouble getting the words in my mind out of my mouth, while at the same time trouble finding the right word to describe what I was talking about. I did a LOT of substituting words that meant other things. I still do that, yet not nearly as much.
I have always been a perfectionist my whole life. I would say that this intensified after the wreck, and yet I was too fatigued to follow through on anything. This was continually frustrating. I was upset about forgetting so much. I would forget what I was saying right in the middle of saying it. I couldn’t track my thoughts and I kept making mistakes. I was introduced to writing everything down in a notebook from a speech therapist in NeuroRehab. This was and has been a lifesaver to me. The only issue thought that still kind of plays into a challenge is I forget I wrote something down. This is often comical now to me, though I did not used to handle it lightly at all. Sometimes still, I will go back and read what I wrote just to refresh my memory on things. I have gotten better about using the notebooks less and less. However, anytime I try to go without them completely it is generally self-sabatoging.
After a while I suddenly developed insomnia. What the heck. I was either a hypersomniac and sleeping all the time or not sleeping for a day or two because my mind would not rest. I would lay there with my eyes closed and nothing…that was more towards the second year though. Around this time I also started transitioning from the hospital bed back to the regular bed with my husband a little at a time. That was a pretty special piece in the recovery process for us both.
Trying to push through the ongoing fatigue, feeling of being drained, or having an anxiety flare would cause a certain guaranteed meltdown if I pushed myself to try and overcome those moments. Sometimes of epic proportions. I have gotten better about managing this though. I have learned that when my brain and my body is done, they are done NOW and I need to respect that. I have to plan way in advance and conserve energy, days in advance of an event, trip, or day of appointments. When it is a busy week, I spend a lot of days playing catch up on my energy. This often involves a lot of sleeping still, often coupled by crazy random muscle spasms.
My sleep has improved though in the last 5 years. I still have bouts of insomnia, but not nearly as much. My sleep has actually mostly normalized. I get an average of 3 -10 hours, with the most common being around 6 hours. Still naps here and there, though not sleeping 20 hours a day anymore.
I actually attribute a lot of that to having gotten prism glasses, vision therapy, and just a lot of time for my brain and body to heal up some and reroute itself. I have done a lot of brain games, a lot of research, and acquired care that has helped me get to the level I am at today; helps me continue to manage my pain most of the time, and I am now able to spend some bursts of quality time on some of the things that add value to my life.
I haven’t been able to combat the fatigue yet. However, I have learned quite a few coping mechanisms that help me be more active and involved in most of the things in my life now. I have a lot of strategies in place that I utilize every day. Some exciting developments as well. This past Summer and early Fall, I started being able to hear some of my alarms again. I cannot tell you how excited this made me. I don’t always hear them still, especially if I am super duper exhausted and pushed myself too far. However, I will take sometimes over not at all.
I have learned more and more as each day passes that time is a completely different animal than energy. Why is it that I don’t seem to be able to accomplish anything like I used to in a day, even though I have all this time given to me? What I did not have, and still struggle with, is having energy, especially energy related to my cognitive base. So you can have all the time in the world, if you have no energy to go with it…not much is getting done.
So I pace myself, plan, plan, plan and gently glide outside of my comfort zones to live up to my desire to help others in the best ways that I can, for as long as I can in a single day.
Then, after all is said and done, I haul myself up to my bedroom, collapse into a well deserved exhausted heap…..and sleep.
I had a memory come to me of a provider asking me if I felt I could handle my children at home. If I felt capable of going home with a house full of children with all the needs that they had. If I felt ready to go home?
This was at some point after the wreck. I don’t have any concept of the timing of this question. I also don’t have any concept of who the provider was that asked it. With the memory of those questions though, came the memory of my feeling about the questions. My instant thought was “Hell no I wasn’t capable, couldn’t they see me?”….my emotion was FEAR and PANIC. The actual words that came out of my mouth I don’t recall. At the time we had 6 kids in our house and I couldn’t wrap my mind around how I was going to be a mom to any of them anymore. I had no concept that it was actually 5 kids at home because one of them had left for college the week after the wreck. It saddens me that I don’t remember any of this.
I do know that those two questions made me afraid that if they knew how messed up I felt in my head, or how much I was disabled, that my children would be taken away from me and I would be deemed as unfit. I could not fully understand what was going on with me or what had happened to me. I couldn’t think how the kids were being taken care of while I laid there fighting for my life. I was afraid I was going to die and no one was telling me that. I wasn’t ready to die yet. I felt death pulling me into that dark abyss though, and to be transparent, often I was very tempted to allow the warm embrace of death to consume me if it meant I could shed that pain that rippled through me with every movement and breath. Yet the thought of my children, my husband, my mom….they kept me here. They kept me fighting for life. Despite the pain. Despite me being consciously unaware of their existence.
I could feel my broken body and I could not do even simple tasks without pain.
Hell, I couldn’t even stay awake long enough to string one thought to another. I couldn’t take a simple breath without pain. I could not rationalize that I had a husband who could take care of the kids, or how much time had passed of this already being done for several weeks at that point, which would extend into 3 months. I couldn’t rationalize that at the time, I had relatives that could help out (or that the burden of my care would change these dynamics as well). I couldn’t rationalize that I wasn’t well enough or even ready to be sent home yet, or what being sent home would have looked like to me or my family. I couldn’t organize my thoughts, my notes, my emotions. All I knew was that I was seriously screwed up. The wall of pain that coursed through my body was beyond unbearable. My husband said that the hospital spoke to him about putting me into a drug induced coma so I wasn’t suffering the pain they were unable to manage for me. My husband said he talked to me and I did not want that. He honored that. His fear was also that I would not wake back up if they did that. He at least could hear me talk. Even though I have no memories of those conversations or that I was alive at all. I do remember the fear of not being able to walk, sit up, or do things for myself. We didn’t know at the time that I wasn’t really lucid anyway. Brain Injury will do that. Trauma will do that. Polytrauma will do that. I don’t know what the best decision would have been. I am still alive now, so there is really no way to know.
I knew I wasn’t thinking correctly. Something was off. I felt like I was in a haze. I felt like I was in a mental vortex and at times felt I had to pretend to be okay or better than I actually was, just so I didn’t lose the kids. I wish someone would have told me that they were asking me those questions to see what help I needed at home; to see what in home services needed to be provided; to decide if I should have been kept longer in the hospital or not. I wish someone would have told me that I was not in danger of losing my children to child protective services just because I could not presently care for myself or them. This would have alleved that fear. I wish someone would have told me that the kids are safe with my husband and had been for several weeks now. Maybe they didn’t tell me because it was obvious to them. I on the other hand, couldn’t figure it out. Every waking moment was a confused and painful state of existence.
While I was laying there, I didn’t know how to answer those questions they asked. I was seemingly focused on my healing where I was at. Then again, maybe they did inform me of all those things, and I just don’t remember.
My thoughts were, how could I take care of my children when I couldn’t even care for myself at that time? How could I function when in so much pain, that even breathing was painful? How could I feed them, take them to school, how could I even tolerate their company when all I wanted was silence and darkness all around me. The lights pierced my eyes like nails being driven into my flesh. The noise around me was amplified as if every small sound was being put through a large speaker.
The sound of shoes walking in the hall was enough to make me vomit….literally. How could I be a mom when I couldn’t even wipe of clean myself? How could I say I didn’t want to go home? How could I say I didn’t want to be a burden? How could I say that I was afraid I was going to die if I was left in that hospital for another day?
How could I say that I was afraid if I went home then I would be going home to die? How could I answer anything logically when logic ceased to exist?
The inner drive to live, to exist, to be more than what I was in that moment I believe is what kept me here. The support and love of my family being with me each day and calling me back to reality kept me here. I believe, that even though I did not build memories to remember their presence, having their presence kept me grounded to life. This helped me fight through the pain, hold on to possibilities. Their determination for me and upheaval in their lives allowed me to eventually heal and begin to flourish in mine.
Those questions flooding my memory…..they were unfair to me. I was not in a mental or physical state to answer them authentically. I had no ability to be rational or process thoughts in the way that was necessary. How was my husband not given those questions? How could I make such an impactful decision being as broken as I was?
I don’t recall if I ever talked about this with anyone. However, throughout various parts of my recovery, I fought against the part of my thoughts that just wanted the pain to end, the medical appointments to end, the therapies to end, the ultra slow progress to just stop and the thoughts that seduced me to see death as a much more favorable option, by any means necessary. At my core, I had always been against suicide. My FAITH would not allow me to cross that line. Though I did tiptoe on that line for quite some time. I did not want to go that route, even though I entertained different ways I could die that would hurt my family the least. None of them seemed possible. What if I wasn’t successful? What if I messed it up? What if they thought I didn’t want them or love them? What did I do to deserve this? What did they do to deserve this? What if they don’t love me any more now that I am all broken? What if I live and I am always broken? What is the point in fighting? What is the point in enduring? How much am I really supposed to take after all? Will I ever walk again? If I don’t what will that mean to me? If I do, what will that mean to me? Where can I run when I can’t even sit up by myself? The thoughts were torturous.
What do you answer about being able to go home and if you are capable of taking care of your children when you are going through all that in your body and in your head? Then add on top of it, the inability to get the words from my head to match what came out of my mouth or onto paper. I used to be so good at this….*looking at my hands* …what’s wrong with me? Why does my body continue to betray me?
In the end though, here we are nearly 5 years later after the wreck. I pushed through all that. I gave up focusing on those dark thoughts (though they still knock at times) and forced myself to focus on surviving, enduring, living. I focused on the positive mantras taped to my hospital walls by my family. I focused on the word that was hanging in my direct line of sight each time I opened my eyes – placed there by my mom….. HOPE. My main focus, drive, and reason for moving forward. I embraced and embodied it and never gave up.
The reality is that I am still adjusting to my new normals. I am still getting used to being an active mom again. All the responsibilities, the time, the effort, the deep sorrows, the sweet joyful highs of being a mom they either speed or slow a person’s recovery. They are a continual work in progress. Sometimes though, time seems to stop when I have a pain flare or just cannot get my mind to work like I want it to, when I want it to. I am then reminded that I can never go back to who I was before the wreck.
She doesn’t exist anymore. She died at the scene of that wreck. However, the woman that lived and got to be a mom still….she is filled with HOPE, gratitude, and sees the possibility and a reason to thrive in each step, hug, kiss, and smile of her children.
So those questions. Can I handle my children at home?
Some days still it’s a resounding yes and some days it’s a deafening no. As time passes the yes days become stronger than the no days. However, even the no days are quietly whispered yes days…..as being a mom is the greatest thing in the world….broken or not. Sometimes, in those first few years after the wreck, being a mom and knowing they needed me to show them how to overcome, how to never give up, how to struggle and survive….this is what drove me to make my appointments, therapies, and helped me out of bed, out of my room, and out of the house. If I were being introspective, it drives me still. I want them to be survivors, not victims of circumstances. I want them to find their strength in my example. I want them to thrive.
Was I ready to go home? Absolutely not. That was an unfair question to me from the start. I was not even with it enough to consent to anything. Let alone my release. That was a decision that should have been made by my medical condition at the time, which I was unable to conceptualize, understand, rationalize, or make any conscientious or informed decision about. I was sent home too early. This was an enormous burden to my family that created a domino affect of challenges that we still feel the affects of to this day…..especially financially.
However, I am grateful to have had the opportunity to heal in a familiar environment. This part I believe was an important transitional piece to my recovery. I still have quite a few things I struggle with cognitively, orthopedically, and other areas.
The kids are forgiving and mostly tolerant. They are grateful I am here. They are adjusting as well, though not without bumps in the road, to my new normal which in essence have become their new normal too. When it comes down to it, that inherent need to carry life, to give life, to impact a growing thriving family is still part of my reality….despite the traumas. Every day I am thankful that when we factor in everything that has happened and how things have unfolded, changed, or are different….I sill have the contribution of the Mom Factor that impacts me the most.
How to Survive as a Primary Caregiver Word Cloud Concept Text Background
Caregiver Quotes Sayings B555D3668De3Cd8E163274F9Da5Cad0D–Caregiver-Quotes-Alzheimers-Quotes – Quotes About Inspiration
Before you take your loved one home from the hospital or care facility, there are things you can do in advance to help prepare them for their transition home, and prepare YOU for one of the most important roles in your life. Absolutely, if at all possible, spend a full few days and nights following your loved one through their routines so you can see what they are actually capable of, what their routines are, and what may be expected of you as their caregiver at home. Know that you will be burning your candle at both ends for an undetermined amount of time.
It will be important to create a notebook, binder, or file with important information that will be available to you without a lot of stress and searching. It may even be helpful to purchase a Planner that includes daily and monthly pages to include everything on. Make a typed or written list of the following:
Medications needed and schedule of medications (what gets taken when)
Names and numbers of providers to call with questions, appointment scheduling, or emergencies
If your loved one has a traumatic brain injury, the name and number of the Brain Injury Association for your area, support groups available, their hours and location.
Write down ALL questions as you think of them. You may have every intention of remembering them. However, I promise you – you will remember these questions at the most inopportune times if you don’t have them written down.
Purchase one or more “white boards” with dry erase markers to hang up at home. These are very handy for keeping track of all kinds of things.
Have a documented list of all medical equipment, supplies, toiletries, and assistive devices you may need at home for your loved one, BEFORE you bring your loved one home. Keep in mind there will ALWAYS be something you didn’t think of at the time, learn about after the fact, or discover in your advocacy for your loved one. That’s okay, don’t be hard on yourself.
Have a support system in place for yourself. Counselor, social worker, therapist, other family members willing to help, home health agency, medical case manager, etc. Keeping yourself healthy first, will allow you to do your very best for your loved one.
So your loved one is ready to come home from the hospital. You may feel excited, nervous, impatient, and mostly prepared. Nothing can prepare you for all the dynamics and changes you are about to take on, other than first hand experience. Structure is imperative. Especially if your loved one has a traumatic brain injury. The first two weeks home will most likely be the toughest to adjust to. Don’t get caught up in the idea that they need a “break” and no routines, schedules, or therapies. Recovery is enhanced with structure and consistency.
You may have realized by the end of the first week that you are feeling exhausted and scattered. You may feel like maybe you weren’t ready to take this on at all. Who is this person you brought home? They are so different. They may be painful, irritable, demanding, and impatient. It may be hard not to take this personally. Your time is no longer your own and you are now responsible for every aspect of this person’s safety, health, and recovery process. You may become so focused on what you should be doing next to help with all the things that need to be done that you cannot sleep or slow down your thoughts. You may be feeling like you cannot do anything right….or perhaps you realize you are doing everything right, yet your loved one is not responding in the way you were anticipating they would. You may find yourself tiptoeing around them, being cautious of everything as each hurdle presents itself.
By the end of the second week, you are fully aware of the time commitment that is involved now. You may be losing track of time as your days now seem to run together. You may now be thinking of a thousand things you should have asked, learned about, or prepared for BEFORE your loved one came home. You may be feeling a bit overwhelmed and may even realize that you are not able to do EVERYTHING on your own. It’s okay, you are not alone in this realization. You also may actually be getting a better grasp of the schedule that is going to work the best for you to survive being a caregiver, while helping your loved one progress through their recovery at this point. You will most likely be beyond exhausted and unsure how you are going to be available to your loved one and still meet the demands, responsibilities, and obligations in your own life – that exist outside of your new caregiver role.
Your loved one has gotten used to certain schedules, expectations, routines, push to be independent and compelled to focus on their recovery in the hospital or rehab facility and will come home expecting those same things to be in place at home. They may feel distant, resistant, challenging, and develop unrealistic expectations about what you are able to accomplish for them both directly and indirectly.
Sometimes your loved one, if they have a traumatic brain injury, may have a skewed view of reality. They may have mood changes you are not used to dealing with, have difficulty adjusting to their “new normal”, and may have difficulty accepting the changes they are now facing every moment of every day. You may be having difficulty adjusting to the expansive and growing list of needs and accommodations they now require.
You may have become overprotective at this point. You may be able to anticipate your loved one’s needs before they even ask for it. You may micromanage every aspect of their day. You may also be doing things for them, that they are able to do for themselves with a little supervision or prodding. This is not not good for your loved one in the long term to have you doing EVERYTHING for them. It is imperative that you encourage independence as much as possible. Help them with what they need help with, of course. However, encourage them to do as much on their own as possible. This will take them out of their newfound “comfort zone” and will not always be successful in the first attempt. Don’t get angry if they attempt something and do not succeed, or if they are unable to complete something they have attempted. This effort may takes weeks, months, and in some cases years of consistent attempts for this to happen succesfully. For some caregivers, there is no mastering this aspect of the caregiving process. You may have a loved one who is incapable of independence. In that situation, set small goals for yourself, for them, and partner with providers to celebrate even the littlest victories or accomplishments. Sometimes just getting up for the day, getting bathed and dressed for the day is the best that can be accomplished that day.
It is imperative to eventually include your loved one in as many life activities as is possible. They may not be ready for this in the first few weeks home. Consider trying to take them on very brief, small outings with you a little at a time. Even if just to a convenience store and then back home, the library and back home. Perhaps even just a ride around the block after getting dressed for the day can be a huge accomplishment. You can build to other places, longer times, and more challenging things as time progresses and they are ready. Some things to consider when leaving the house with your loved one:
Have a “travel bag” ready to go with you on each trip that includes their medications, a change of clothing (maybe two changes of clothing), items that help them cope, and notebook (with pen or pencils and higlighters in different colors)
Have something for them to drink with you (bottled water, thermos, juice box, etc)
Carry ear plugs, headphones, sunglasses, lap blanket, and any other things that may help your loved one when they are away from home based on their personal needs.
Allow tons of extra time for getting ready to leave the house with your loved one. Allow extra time to make it to appointments on time. I would suggest at least an hour wiggle room. Folks with traumatic brain injuries have a real challenge with being rushed, given too many tasks at once, or last minute changes. Even though they may make many last minute changes in their level of participation, effort, and coping ability.
Be prepared to turn around and go home. You loved one may have a meltdown, panic attack, behavioral outburst you are unable to manage safely away from home, or they may feel “flooded”or voice their desire to be home NOW. Sometimes, when they have a medical appointment, going home is not a possibility until after the appointment. Often times, going to a medical appointment will be the only outing they can do that day.
The largest part of recovery will take place within the first two years. However, this is not where recovery ends. Research continues to show that healing, strength, behavior, body changes, and rerouting of the brain continues – even years later.
It is common to feel sad, depressed, or disappointed if your loved one has not reached the recovery level you anticipated at the one or two year mark in their recovery. Your loved one also may be having some struggles around this time as well. They may have expected to be further along in their own recovery, or reliving the time of year their accident happened and comparing it to their life before their injuries. Families often misjudge the amount of time it will take for their loved one to recover or plateau ; especially if their obvious physical injuries/fractures have healed by this time and you are unable to “see” the traumatic brain injury.
[Potential Providers may include the following: physicians, physiatrist, nurses, physical therapists, occupational therapists, speech therapists, recreational therapists, respiratory therapists, counselors, psychologists, neuropsychologist, social worker, specialists, nurse’s aids, home health aids, medical case manager, family caregivers, volunteers, and/or clergy.]
Monday, September 10, 2018 is suicide prevention awareness day.
September 9th-15th, 2018 is suicide prevention awareness week.
If someone talks to you about suicide or harming themselves or if they open up to you about how they feel, listen. Listening to and acknowledging someone can save a life.
Let’s work towards ending the stigma of mental health and suicide. Instead if saying someoneone committed suicide say they died of suicide or they died of depression.
People commit crimes, suicide isnt a crime, it’s the last symptom of depression.
Cindy Laverty, caregiver coach, radio talk show host, and author of, “Caregiving: Eldercare Made Clear and Simple,” offers examples of phrases that can leave caregivers thinking, “Did she really just say that?”
1. “Why are you having such a hard time being a caregiver?” Usually voiced by someone who has never been a caregiver for a loved one, this question can be very difficult for a caregiver to hear. As Laverty points out, it effectively takes their role of providing care for a loved one, and diminishes it.
2. “Gosh…we haven’t seen you in such a long time. Why don’t you get out more?” Though it probably comes from a place of love, Laverty points out that this can be an unproductive way to express concern for a friend or family member who is a caregiver. “The truth is that most caregivers do need to get out more, but this is an insensitive way of saying it,” she says.
3. “You look really tired. Are you making sure to take care of yourself?”Caregivers generally have a good reason for looking tired and haggard—because they are. “The biggest issue for caregivers is that they tend to sacrifice personal care—it’s the first thing that goes,” Laverty says. Caregivers look tired because they are not getting enough sleep, they spend their nights worrying and making sure their loved one doesn’t wander. But, that doesn’t mean that they appreciate having that fact pointed out to them.
4. “Caregiving seems like a burden. You shouldn’t have to sacrifice your life for your mother’s.” Caregiving is hard. That’s why so many people, both caregivers and non-caregivers alike, refer to it as a ‘burden.’ But, according to Laverty, when a friend or family member likens caregiving to a burden, what they’re really telling the caregiver is that they aren’t handling the situation properly and that this isn’t what they should be doing with their life. “Caregivers get into their role because they started out as loving, caring people trying to do the right thing,” she says.
5. “You need to get a ‘real’ life.” As the old saying goes, ‘you’re preaching to the choir.’ “Every caregiver understands that they need to get a life, have a plan, start making time for themselves,” Laverty says. But, telling a caregiver to ‘get a life’ is like telling them that what they’re doing now (caring for a loved one) doesn’t matter.
6. “Why don’t you just put you mother in a nursing home? It would be better for everyone.” Laverty says that comments like this can make a caregiver feel like they’re not doing a good job taking care of their loved one. The reality is, a nursing home might not be financially feasible, or a caregiver may be trying to keep their loved one at home for as long as possible. Outsiders think they’re offering good advice, when they might really just (unintentionally) be making a caregiver feel guilty.
7. “Why do you visit your dad so much? He doesn’t even know you.” If a caregiver is taking care of someone who has Alzheimer’s or another form of dementia (or brain injury) and they live in a nursing home, people may ask why they bother to visit someone who doesn’t even remember who they are. “People need human contact and love, or they will just shrivel up and die,” Laverty says, “Caregivers shouldn’t feel stupid for going to visit someone who doesn’t recognize them outwardly. As long as they know who their loved one is, that’s all that should matter.”
8. “Don’t feel guilty about…” When you’re a caregiver, “guilt just comes with the territory,” according to Laverty. Caregivers want to fix everything, to solve every problem, to ease every hurt, when the reality is that no one can do it all. When people tell a caregiver not to feel guilty about something, it can make things worse by bringing that guilt to the forefront of their mind.
9. “Let’s not talk about that. Let’s talk about something happy and fun.” When it comes to your average small talk scenario, caregivers generally don’t have a lot of “fun” things to contribute. Laverty says that people need to understand that people taking care of an elderly loved one need to talk about what’s going on. Friends and family members of caregivers should take the time to listen to what a caregiver has to say, no matter how ‘unpleasant,’ or ‘unhappy’ it is.
10. “You must be so relieved that it’s over.” When their loved one dies a caregiver is likely to be facing a bunch of mixed up emotions. Relief may be one of those feelings, but Laverty feels that it’s probably not productive to point this out to a person who has just lost a parent, spouse, or sibling. “If you diminish the event, you diminish the life and effort of the caregiver,” she says.
11. “When are you going to get over it (a death) and move on?” Grief is an individual process. For some people, processing the death of a loved one will take some time. This is particularly true of caregivers, who’ve poured a significant amount of time and energy into taking care of the person who has just passed.
I have been reflecting. Reviewing old notes, writings, posts from the first 3 years after the wreck. This was the epicenter of the hardest of my recovery. Also the hardest was not feeling listened to by certain providers, especially during that first year; these providers who dismissed my pain, and who I was supposed to be trusting with my care.
I have decided to share some of those thoughts here….in my Blog. This one was from 2014 just after the first of several surgeries to come:
I remember. I remember going to Spectrum Health Butterworth for surgery. I remember the surgeon calling me the night before after weeks of trying to get a hold of him to quash my fears and answer the questions, which to him were probably nonsense….but to me – were the words that drove my every waking breath and desire to understand what I was about to endure.
I needed his reassurance. His candidness. His time. His empathy. His patience and his understanding. I needed his apology, which I doubt I will ever hear. I remember feeling frustrated and angry that he told me to call any time with questions and then never responded to those questions, leaving me hanging perilously from day to day as if I were waiting for my death sentence.
Each moment, perhaps my last with each click of the clock which hung on the wall and taunted me so consistently with each passing hour, day, and night. To him he was probably busy, and thought I should just TRUST him because he was one of the best if not the best surgeon in his specialty/field…..but how could I trust when that trust had been shattered like the pieces that lay inside my body still broken, painful, and damaged?
That trust was broken by him when he didn’t believe me and my complaints of pain, and yet I craved his answers and solace to help me get through the coming days and weeks before that daunting day when I would go beneath his knife. I craved his humanity and his ownership for his role in my current state. Yet that never came.
I felt trapped. I knew I needed the procedure….this surgery. How could I trust once the betrayal had been sown? How could I believe that this was the right thing to do by this same man who cast me aside like a scrap piece of paper not worthy of his time until I got beneath the glaring lights of the cold and clinical Operating Room…..where I saw him momentarily.
How could I in the face of adversity and enormously high risk of dying on the operating table….TRUST?
I took a break, several in fact, and pretended like everything was okay, for my family’s sake. I don’t know how I made it through other than by faith, the driving and enormous desire for relief of the growing pain in my right side (where the ribs never healed) that never went away; and the increased loss of strength and use in my right arm (most likely from forcing myself through therapy for 12 weeks and putting forth my BEST EFFORT with tears flowing like endless waterfalls as I forced myself to continue each exercise…..not knowing that my shoulder/scapula was still fractured and had not healed at all either as well).
How could I push aside the rage and anger that made several professionals miss such an important detail that I was very vocal about? How could I give in to the experience when I had so much left to say, learn, live, and experience?
I just kept breathing…..deeply, slowly, studying each item, each line in the ceiling as I was wheeled along in the stretcher. I focused on the names of those pushing me, and their conversations and attempts to bring calm to me. I embraced each quirk on the face of my husband, mother, and Medical Case Manager as this may be the last things I see. I was acutely aware of every single detail and overwhelmed by the voices, noises, and conversations around me. The lights were bright, my headache grew, and I had to take myself to another place while still being exactly where I was. I know that sounds silly but I have no other way to explain it..
This fileting of my body with a magnificent dance of his scalpel tools and his skillful artistry beneath the clinical shroud of the operating room; a handful of specially trained staff who would bring me to the other side of waking up once more…..or so I secretly begged for – and perhaps begged for aloud as well.
I remember putting on my bravest face and not knowing if this was the day that I kissed my children goodbye for the last time before I saw them walk out the door to go to school; not knowing if this was the last time that I would see my mother’s face, feel my husband’s touch, and I was so afraid. I wasn’t afraid to die. I just wasn’t ready. I thought on this intensely. Should I have written good bye letters the night before. I had decided not to because to me that was the same as giving up. How do I find the words to say the things that I feel? HowI do I make the words in my head come out on paper in the way I wanted them to and to have enough of an impact to make everything up to that point feel “worth it” when since the wreck I struggle just to get my words to get from my head out my mouth in the way I desire.
How do I trust God and the Universe and all my spiritual beliefs and experiences? How do I know at this point that God is even real any more? Then I had to remind myself of all the miracles surrounding the wreck and force myself to believe that miracles would happen that day.
As it so happened…..the 3.5 hour surgery we were told it would take turned into about 8 including the 2 hours in recovery, per my husband and mom. The stakes were high. The man I decided at the last minute to trust with my life in its entirety took me on a journey and he and his team brought me out the other side.
This was my first post surgical feeling of gratefulness!!! When my eyes opened and I noticed people rushing around me in recovery, and seeing my O2 sats in the 80’s but just feeling such calm, feeling peaceful, acutely becoming aware again, and just blinking ever so slowly…….grateful in that very moment. Grateful that I had been allowed to once again survive that Journey…..
Things may be bad sometimes and to some may seem hopeless, please just let me accept my life in reality and love my life anyway.
But I am pleading with you not to steal what keeps me going…Hope.
There are those times that I am quite aware of how bad things are,
those temporary moments when I can not see through my streaming tears.
But I am begging you to let me hold on to what I know I need…Hope.
Please do not ever say you could not stand to live the life that I have,
you could not possibly know unless my life were the life you were living.
I am asking you to let me have what I need most for the moment…Hope.
Do not make false promises or paint false dreams, let me have my own dreams.
Please do not as a professional, ever say there are no more answers or help.
I am pleading with you to allow me the life luxury I need most…Hope.
Always there are more answers, it may be just you without those answers.
When you say discouraging things,it makes it hard to hold on to my hope.
I am telling you that all patients need that one joint component…Hope.
If you have not walked in someone else’s shoes, do not be too quick to judge.
All of us at times face adversity, just some have to live with it all of the time.
We are somehow able to find strength and endurance through our…Hope.
No matter how grave the situation or how serious the medical problem,
remember that miracles and things not quite understood by man do happen.
Do not ever be so cruel and heartless as to take away someone’s…Hope.
Do not ever say we will amount to nothing or get no where in this life.
As long as we are alive, we can share with someone else what we have.
In giving to others the survival tips we have learned we give…Hope.
When we hear traumatic brain injury, we often think of a trauma from say….a vehicle accident, or sports, or falls.
It’s time to continue bringing awareness to this silent epidemic…Domestic Violence.
*Polytrauma and Traumatic Brain Injuries are common with Domestic Violence
* Women experience about 4.8 million intimate partner-related physical assaults and rapes every year.
*Less than 20 percent of battered women sought medical treatment following an injury. A significant number of crimes are never even reported for reasons that include the victim’s feeling that nothing can/will be done and the personal nature of the incident.
*The cost of experiencing Domestic Violence includes medical care, mental health services, and lost productivity
*Domestic Violence affecting LGBT individuals continues to be grossly underreported; it is as much as a problem within LGBT communities as it is among heterosexual ones.
Domestic violence, also known as intimate partner violence, is a pattern of abusive behavior in any relationship that is used by one partner to gain or maintain power and control over another intimate partner. Domestic violence can be physical, sexual, emotional, economic, or psychological actions or threats of actions that influence another person[1]
Research on abused women shows that between 40 to 92 percent of victims of domestic violence suffer physical injuries to the head; nearly half of these women report that they have experienced strangulation, according to research published in October 2017 in the Journal of Women’s Health.
DID YOU KNOW?
More than 40 per cent of victims of domestic violence are male.
40% of those reporting serious assaults by current or former partners in the past year were men, and most of their attackers were women.
80 per cent increase in reports from male victims between 2012 and 2016.
Women are as likely as men to be agressors.
Men also make up about 30% of intimate homicide victims, not counting confirmed cases of female self-defense.
Female-on-male violence is often assumed to be harmless, given sex differences in size and strength. Yet women may use weapons — including knives, glass, boiling water and various household objects — while men may be held back from defending themselves by cultural taboos against harming woman
Domestic violence against men can take many forms, including emotional, sexual and physical abuse and threats of abuse. It can happen in heterosexual or same-sex relationships.
Abusive relationships always involve an imbalance of power and control. An abuser uses intimidating, hurtful words and behaviors to control his or her partner.
Men who find themselves as victims of domestic violence are often viewed by and made to feel emasculated and weak. We are told to fight back and ridiculed for “accepting” or “allowing” the abuse. Many people don’t know how to approach the conversation for fear of adding insult to literal injury, or because they simply don’t believe a man can be a victim of domestic violence.
Men are expected to be violent and in control, particularly in control of women, while supressing their emotions and sucking it up whenever life doesn’t go their way. When a man steps outside of this box, he is often ridiculed as weak or as not being a “real” man.
This toxic view of masculinity often leads men to become perpetrators of domestic violence, but when they’re victims, it can prevent them from coming forward. The stigma, and the fear of not being believed, can be so strong that men simply don’t report the abuse.
Abused men have faced widespread biases from police, judges and social workers. Equality should include recognizing women’s potential for abusive behavior.
Claims on both sides should be fairly investigated — without political bias, sexist bias, or cultural bias.
Domestic violence service providers. Screen everyone who seeks DV services for TBI. A brief screening tool that was designed to be used by professionals who are not TBI experts is the HELPS.2
HELPS is an acronym for the most important questions to ask:
H = Were you hit in the head?
E = Did you seek emergency room treatment?
L = Did you lose consciousness? (Not everyone who suffers a TBI loses consciousness.)
P = Are you having problems with concentration and memory?
S = Did you experience sickness or other physical problems following the injury?
If you suspect a victim has a brain injury, or she answers “yes” to any of these questions, help her get an evaluation by a medical or neuropsychological professional – especially if she has suffered repeated brain injuries, which may decrease her ability to recover and increase her/his risk of death.
Medical imaging is an important part of assessing the severity of head injuries, but a new device could help medical providers in emergency situations detect structural damage to the brain even before you reach a CT scanner.
The FDA approved BrainScope’s Ahead 100, in 2014, a device that patients wear on their heads – like a hat – that can produce an electroencephalogram of the brain’s structure.
May 18, 2015 BrainScope Company,
Inc. announced that the United States Food and Drug Administration (FDA) has cleared the company’s “Ahead 200” device. Using commercial smartphone hardware that leverages Google’s Android operating system, the Ahead 200 records and analyzes a patient’s electroencephalograph (EEG) using a custom sensor attached to the handheld to provide an interpretation of the structural condition of the patient’s brain after head injury.
It is indicated for use as an adjunct to standard clinical practice to aid in the evaluation of patients who are being considered for a head Computerized Tomography (CT) scan, but should not be used as a substitute for a CT scan. It is to be used on patients who sustained a closed head injury within 24 hours, clinically present as a mild traumatic brain injury (TBI), and are between the ages of 18-80 years.
In September 2016 Brainscope announced clearance by FDA for its latest device, the Ahead 300. This the first of the company’s products that will actually be distributed commercially and it was touted as their most advanced version. It utilizes disposable electrodes and a connected smartphone to process the information. It relies on the firm’s proprietary algorithms and machine learning to spot certain patterns and correlations within the recorded brainwaves.
Scientists are looking to biomarkers, or biological indicators, in the blood to help them differentiate between brain injuries of different severities. For example, there may be an increase of a specific biomarker in the blood of a patient with a severe injury that wouldn’t be present in a patient with a mild injury. When doctors are better able to determine the severity of an injury, they can make sure patients get the right care at the right time, and that could make a big improvement in their prognoses.
Some of the biomarkers used are the following:
•Known as Banyan BTI (Brain Trauma Indicator), the new test measures levels of two protein biomarkers — ubiquitin carboxy-terminal hydrolase-L1 and glial fibrillary acidic protein — that are released from the brain into blood within 12 hours of head injury.
The Brain Trauma Indicator blood test the levels of two proteins, UCH-L1 and GFAP. Upon brain injury, these proteins are released from the brain into the blood. If found at elevated levels, brain damage, with intracranial lesions, normally otherwise only visible on a CT scan, is suggested. Levels of these blood proteins after mTBI can help predict which patients may have intracranial lesions visible by CT scan and which won’t.
To give approval, FDA used data from a clinical study of 1,947 individual blood samples from adults with suspected TBI and compared blood test results with CT scan results. How did the blood test perform? It was able to predict the presence of intracranial lesions on a CT scan 97.5 percent of the time and those who did not have intracranial lesions on a CT scan 99.6 percent of the time.
•Levels of one protein, called brain-derived neurotrophic factor (BDNF), taken within 24 hours of someone’s head injury, could predict the severity of a TBI and how a patient would fare, they found.
While healthy people averaged 60 nanograms per milliliter of BDNF in their bloodstreams, patients with brain injuries had less than one-third of that amount, averaging less than 20 nanograms per milliliter, and those with the most severe TBIs had even lower levels, around 4 nanograms per milliliter. Moreover, patients with high levels of BDNF had mostly recovered from their injuries six months later. But in patients with the lowest levels of BDNF, symptoms still lingered at follow-up. The results suggest that a test for BDNF levels, administered in the emergency room, could help stratify patients.
•Tau protein (MAPT) possible biomarker for traumatic brain injury . The formation and accumulation of misfolded protein aggregates composed of amyloid-beta (Aβ) and tau. APT is a neuronal protein that plays an important role in axonal stabilization, neuronal development, and neuronal polarity. MAPT release into the CSF and blood has been interpreted as indicative of axonal injury.
It is believed that this biomarker may prove helpful in identifying high-risk patients with mTBI. However, additional studies are needed to establish the diagnostic value of serum tau in detecting traumatic brain injury in patients with mTBI.
I am grateful for so much. The opportunities that life continues to give us to be together and grow as a family and as individuals.
The last four years since the wreck have been crazy, intense, horrible, disappointing, amazing and life changing. We have had high highs and low lows. There were times we didn’t know how we would make it to the next day, next week, or next month.
What we miss seeing at times is that we are all just passing time and occupy our chairs very briefly. We never know when that time will be altered. The time I have been given with my family is a gift. We can let our experiences make us bitter or better. We can be caught up in the darkness of our experiences or be guided by the light of strength, perseverance, and embrace the little miracles of the recovery process.
Some say we have had more than our share of loss. I see God’s light in my family every day. I may not understand the loss, pain, triumphs, and blessings – however I trust in the plan that is laid out for us and endeavor to accomplish as much as I can to live up to the gift I have been given by the miracle and grace of having survived so much.
I am a Survivor trying to bring inspiration and awareness about Polytrauma and TBI to others.
33 Months ago, our Website Page for YOUR STORIESwent LIVE. Since then, we have met some amazing folks and had the opportunity to share their stories, experiences, and soulful expressions with all of you out there.
If you have not submitted your own story. You can do that by starting HERE.
Survivors, Caregivers, Providers; Parents, family, or friends – share your story to be published on this site today. We are glad to help you in any way we are capable.
We have recently finished Stories for various folks that we would like to share with you. Take a look, read some, leave a comment at the bottom of their story if you choose, and pass the link on.
Let’s bring Global Awareness to Polytrauma and TBI
A HOPEster is anyone who is interested in helping one person succeed to be independent – even if the person they are currently helping is themselves (specifically related to Polytrauma and Traumatic Brain Injury – though can apply to anything other than these two things as well).
A HOPEster is someone willing to share information, offer support (whether that be emotional, mental, physical, or just by sharing awareness information), and encourages advocacy (self-advocacy, medical advocacy, advocacy awareness).
A HOPEster is someone that thinks outside the box, is passionate, idealistic, and believes in the inherent goodness of others and our collective responsibility to each other as human beings.
numbers). Hang somewhere visible, so it can be seen and utilized daily. Update the same day weekly or as schedules change.
If something changes in the schedule, write it down IN THE PLANNER. Label cupboards and storage containers as a reminder of where things are kept; label doors as a reminder of which room is which.
Use post-it/sticky notes. You can use them anywhere in your home or personal workspace to remind you to do specific tasks (such as a sticky on a library book that has to be returned by a certain date, or start load of laundry today, etc).Once you have completed the task, it’s important to throw the post-it/sticky note away. This way you won’t accidentally redo what you already finished.
some can be set to remind you when to take your pills, with an alarm, vibration or flashing light.
n), all medications and their dosages (remember to list any herbs, supplements taking), and list of concerns. Record meetings or appointments to go back and listen to later and take notes from the recording.
Keep in mind when talking about that “elephant in the room” that sometimes the very people who need to hear the topic being talked about are the least receptive to hearing it. That often means that person might even be you. Being receptive to talk is important. It is equally as important to actively listen. Support from others that share the same or differing opinions about the issues you wish to speak about will make it not about you, but about the issue and how much it impacts others who have gone through the same thing, or are currently experiencing the same challenges. Support groups (even if they are online) can be an amazing source of support, ideas, and encouragement.
I didn’t care where I was either. Sitting in the wheelchair, at a doctor appointment, during therapy, on the toilet, in the shower, trying to read, while eating, while drinking, while talking, typing on my computer, home or away I was constantly falling asleep.
embarking on several “mini naps”. I attended 3 sleep studies in the first 18 months after the wreck. I eventually was diagnosed with Hypersomnia vs Narcolepsy. There was no history of Narcolepsy in my family or with me. Finally it was determined that this Hypersomnia was a result of my TBI. This was a fatigue so intense that simply waking up and having help getting dressed was enough activity to illicit another “nap”.
If the room was dark…even better. I couldn’t even listen to the TV in the first few months. It took almost a full year before I could watch a one hour television show without feeling overwhelmed. I remember there was just to much movement on the shows. There was too much to look at and it made me nauseous. So the family spent many a movie night with me sequestered to my hospital bed drinking up the dark quiet and solitude. I was also dealing with horrendous headaches, dizziness, and room spinning feeling. On top of that the room would slant by the end of the day. I always felt like everything was “crooked”.
I have learned that when my brain and my body is done, they are done NOW and I need to respect that. I have to plan way in advance and conserve energy, days in advance of an event, trip, or day of appointments. When it is a busy week, I spend a lot of days playing catch up on my energy. This often involves a lot of sleeping still, often coupled by crazy random muscle spasms.
I wish someone would have told me that they were asking me those questions to see what help I needed at home; to see what in home services needed to be provided; to decide if I should have been kept longer in the hospital or not. I wish someone would have told me that I was not in danger of losing my children to child protective services just because I could not presently care for myself or them. This would have alleved that fear. I wish someone would have told me that the kids are safe with my husband and had been for several weeks now. Maybe they didn’t tell me because it was obvious to them. I on the other hand, couldn’t figure it out. Every waking moment was a confused and painful state of existence.
At my core, I had always been against suicide. My FAITH would not allow me to cross that line. Though I did tiptoe on that line for quite some time. I did not want to go that route, even though I entertained different ways I could die that would hurt my family the least. None of them seemed possible. What if I wasn’t successful? What if I messed it up? What if they thought I didn’t want them or love them? What did I do to deserve this? What did they do to deserve this? What if they don’t love me any more now that I am all broken? What if I live and I am always broken? What is the point in fighting? What is the point in enduring? How much am I really supposed to take after all? Will I ever walk again? If I don’t what will that mean to me? If I do, what will that mean to me? Where can I run when I can’t even sit up by myself? The thoughts were torturous.
Don’t get angry if they attempt something and do not succeed, or if they are unable to complete something they have attempted. This effort may takes weeks, months, and in some cases years of consistent attempts for this to happen succesfully. For some caregivers, there is no mastering this aspect of the caregiving process. You may have a loved one who is incapable of independence. In that situation, set small goals for yourself, for them, and partner with providers to celebrate even the littlest victories or accomplishments. Sometimes just getting up for the day, getting bathed and dressed for the day is the best that can be accomplished that day.
The largest part of recovery will take place within the first two years. However, this is not where recovery ends. Research continues to show that healing, strength, behavior, body changes, and rerouting of the brain continues – even years later.
HOPE TBI 