Our 2 Newest HOPEsters – Debbie and Kris

#MoreThanMyBrainInjury

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: 

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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:

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New Page Added – Clinical Neuroendocrinologists

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.

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Also check out our Neuroendocrinology page as well, if you haven’t already done so.

HOPE TBI – PODCAST

New Episode Every Sunday

This past Sunday we had 2 new Podcasts drop from our Blog post about Sex and Disability

The first Podcast is part one of a 2 part series – Sex and Disability

The second Podcast is part 2 of a 2 part series – Sex and Disability: Sex and Brain Injury After Trauma

Introducing HOPE TBI Podcast

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.

Listen Here: HOPE TBI – PODCASTS

Our Podcast is available on Anchor by Spotify, Spotify, Breaker, Google Podcasts, Pocket Casts, and Radio Public

Thank you for visiting the HOPE TBI Website.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here: https://hopetbi.com/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.

That Mother

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.


Happy Mother’s Day!


~Written by Caren Robinson 2021

HOPEster Movement

Join the HOPEster Movement!

Are you passionate, idealistic, and believe in the inherent goodness of others and our collective responsibility to each other as human beings?

Then you are a HOPE’ster!

https://www.facebook.com/groups/hopester/

#HOPEster #hope_tbi #ImaHOPEster

Brain Injury Awareness Month

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.

About Brain Injury

#hope_tbi

5 Important Brain Injury Recovery Steps

HOPE TBI Podcast
Brain Injury Recovery Steps

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.
    • See additional information about VISION THERAPY.
Auditory Testing
  • 2. Auditory Testing (hearing tests) –
    • 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.
    • See our article – SPECT CT
  • 5. Rest
    • 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

Thank you for visiting the HOPE TBI Website.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

https://hopetbi.com/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.

Transition Ability

Let’s start your journey. Contact me for a FREE 30 Minute Life Coaching Consultation.

Sometimes its the journey that teaches you a lot about your destination ~Drake

If you can’t fly, then run; If you can’t run, then walk; If you can’t walk, then crawl; but by all means, keep moving.
~ Martin Luther King Jr.

#vitalabilityllc #transitions #ability #hope_tbi #lifecoach #trauma #braininjury #survivor

Thank you for visiting the HOPE TBI Website.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

https://hopetbi.com/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.

We Support Black Lives Matter

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.

~Caren Robinson

 

Black Lives Matter!

THE_BLACK_LIVES_MATTER_MOVEMENT

Thank you for visiting the HOPE TBI Website.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

https://hopetbi.com/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.

Reviews and Testimonials

Hello HOPEster’s,

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.

You can reach our page here:

https://hopetbi.com/reviews-and-testimonials/

.

reviewstestimonials

No Glove No Love – Safe Sex After Brain Injury

sexbrain

Sex and Disability

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
  • All people need to learn about and understand sex
Also check out our web page called Sex After Brain Injury and Trauma

disabilityandsex

Happy New Year HOPE’sters

Here’s hoping all our fellow HOPE’sters had a Merry Christmas and Happy Holidays.

We would like to wish you a Happy New Year with 2020 vision of great things yet to come.

Never give up HOPE, and never be afraid to be who you are meant to be. Don’t be afraid to be who you are!

Reflection of Motherhood

reflectionofmotherhood

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…..

Parenting After Brain Injury – A Guide

https://www.headway.org.uk/media/3998/parenting-after-brain-injury-e-booklet.pdf

How Motherhood Makes You Smarter

https://www.smithsonianmag.com/innovation/how-motherhood-makes-you-smarter-55995649/

The effect of parental traumatic brain injury on parenting and child behavior.

https://www.ncbi.nlm.nih.gov/pubmed/9885318

 

When Parents Have Brain Injuries: Helping Children Cope

http://www.muhcpatienteducation.ca/DATA/GUIDE/532_en~v~when-parents-have-head-injuries-helping-children-cope.pdf

 

Adult functioning of mothers with traumatic brain injury at high risk of child abuse: a pilot study.

https://www.ncbi.nlm.nih.gov/pubmed/24401827

Children with Traumatic Brain Injury: Associations Between Parenting and Social Adjustment

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4695398/

Children of a parent with brain injury

https://www.braininjury-explanation.com/life-with-brain-injury/consequences-for-the-family/children-of-a-parent-with-brain-injury

Finding My Mom Again After Her Brain Injury

https://www.scarymommy.com/finding-my-mom-again-after-brain-injury/

 

TBI Ten Years Later: A Mother’s Story Continues

https://www.brainline.org/story/tbi-ten-years-later-mothers-story-continues

This Mother’s Day, know the symptoms of concussion

http://theconversation.com/this-mothers-day-know-the-symptoms-of-concussion-96101

 

How Treating People With Brain Injuries Helped Me Forgive My Mother

https://narratively.com/how-treating-people-with-brain-injuries-helped-me-forgive-my-mother/

The Elephant In The Room

Elephant In The Room:

~ 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. ~

orangeelephant

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.

elephantagitationKeep 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.

purple elephant

Patient Spotlight – The Scapula Institute

scapulaanatomy
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”

fractured scapula
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.
 
 

platingribandscapulajune2016
View from Back – Right Side Plated

rearviewplatingjune2016
After Reconstructive Surgery of Ribs and Scapula

;;

Journey Into the Dark Side

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:

The Journey Into the Dark Side

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…..

The Journey into the Dark Side.

~ Caren, 2014

carenpostsurgery

NEW STORIES – Matters of the Heart

share

I am a Survivor trying to bring inspiration and awareness about Polytrauma and TBI to others.

33 Months ago, our Website Page for YOUR STORIES went 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
NEW SUBMISSIONS:        Murray Dunlap – Survivor
                                             Bobby Porter – Caregiver
                                        Jason Stockman – Survivor
                                             Tiffany McCullock – Survivor

SPECT CT – Diagnosing and Treatment of TBI

As Science evolves, so should the diagnosis and treatment of Traumatic Brain Injuries.

brainimagecolor

Check out our newly added Web Page:    SPECT CT

 

This is an important second test in settings where CT or MRI are negative after a closed head injury with post-injury neurological or psychiatric symptoms.

Hurtin’ for Certain

pain

 

Events are typically considered traumatic when they threaten the life or bodily integrity of the individual who experiences them. After experiencing a trauma people tend to develop certain predictable reactions.   Examples are the following:

  • Persistent and unwanted thoughts, memories, or dreams of the event

[while I have no memory of the wreck I was in, since I started dreaming again, I dream of being in wrecks, of my kids or family members dying in wrecks, and am consumed with many unwanted thoughts and various levels of anxiety when in a vehicle that varies from day to day.  On my worst days this creates a lot of fear and anxiety]

  • Heightened physiological arousal, such as tension, nervousness, irritability, startling easily, poor concentration, or poor sleep

[I can attest to all of this. This is one of the largest part of my recovery that I continue to work on and that gives me the most challenging hurdles to overcome and deal with]

  • Avoidance of places or things or events that are reminiscent of the traumatic event

[ I can’t say that all of this necessarily applies to me. I do like to avoid driving in bad weather, as it makes me quite nervous and fearful.  Stop and go traffic heightens my traffic anxiousness, and I have a lot of other challenges while riding as a passenger now…especially]

So, that being said, the wreck I was in was absolutely a traumatic experience.

I always felt I had a high pain tolerance before the wreck. I may have, I did give birth twice after all. Yet now I believe I was mistaken.  Childbirth Labor does not compare to multiple fractures and the chronic pain that never goes away from multi-system traumas.  At least with childbirth, eventually the pain stops and repeating that process is a choice.

My tolerance for pain has grown ten-fold.  What I would have gone to the hospital for before, I wouldn’t even blink at for a Tylenol now.  That being said, I have sunk into a new acceptance of this chronic pain filled body I live in now.  I accept it as my new normal.  My new cloak of pain I have become accustomed to.  Chronic pain that some days holds me hostage from accomplishing what I desire.  That is, until it raises its ugly head to show me it can still get worse with white hot nerve pain, muscle spasms, and a debilitating wave of continual sharp anchors that drag me down.

I have always had an intuitive relationship with my body.  A polytrauma screws all that intuitiveness up.  Some days it’s hard to know what is up or down or sideways with where that chronic pain is located.  Some days I can point right to its origin. Other times it feels like it is all over me and I can barely walk or pick up my feet.

I have been hurting a lot since I got off of the pain pills on my own.  My back aches, my feet intermittently get pins and needles.  My right knee doesn’t want to cooperate with that left foot that tends to drag by the end of the day.  My neck feels puffy, tight, and just hurts and acts like it has a little storm in there shooting electric lightening bolts down my arm to my fingers and up to my ear now and again.  My ribs that are plated, like to play musical ribs for the spasms and often include the right lung and back in their spasm just for fun.  My head throbs and I feel such intense exhaustion. Most days, it is a struggle to just get moving. Add that on top of the random high pitched dog whistle sound in my ear/head at inconsistent times.  Makes things quite interesting.

I am driving more now too…so that means no muscle relaxers or pain medication while on the road or doing errands. I am strictly diligent about this.  Of course, the trade-off  to taking on more responsibility is being more irritable, hurting more,  having more intense muscle spasms, shooting nerve pain, and dragging myself around literally days and weeks at a time without being able to get on top of the pain and discomfort.

joint pain

I am a whining mess as I type this as I so get tired of hurting and aching.  Here is the irony though.  I love being alive so much, and value life so much, that the value of living is worth more than the miserable pain that continues to come in waves.

I got news for ya’ ….Chronic pain threatens body integrity as well.  Any new flares that are not the new normal are seriously emotionally and physically exacerbating.  It’s like “seriously how much must I take”.  So the trauma continues and I remain….Hurtin’ for certain.

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