I remember once when I was 4 I smacked the back of my head on a carport and had to get stitches and felt unsafe. When I was in 1st or 2nd grade I was in a car accident and we were hit by an Electrolux vacuum cleaner truck. I was also rear-ended around 1996 by a big truck. His throttle was stuck and kept hitting our car and us repeatedly. In 2002 I had a hysterectomy. In 2012, I was T-boned by someone who pulled in front of me. My ribs and diaphragm were injured in that wreck. A massage therapist worked with me to dig abdominal muscles out from under my ribs. All of those experiences were nothing though compared to what would happen next.
On June 25, 2021 I was on my way to work. It was a beautiful sunny day and I had just had lunch with a University mentor in an Honor Society I was in. I was heading to work to meet with a client. I was cleaning for an emergency room doctor as a personal concierge, house manager, and cook. I was on the main thoroughfare from downtown. It is supposed to be 30 mph most people go 40-45. I was travelling at about 45 miles per hour at the time. I was always very cautious when making my turns. I was lead (first in the line) of a 3 vehicles with my right-hand blinker on, getting ready to make a right turn into the street of my job. I was looking to the left when a vehicle plowed into the rear end of the vehicles behind me, and then those vehicles crashed into me. After the impact, 2 bicycle cops had passed us in the turn lane on the way to a call. They came to my call instead 1 talked to me 1 to pickup driver that caused the crash. The guy who hit all of us reeked of marijuana and I noticed he reeked. Even if he had a medical marijuana card he can’t drive away I thought, yet the police let him drive away anyway. It turns out the guy had 5 active warrants for 3 for accidents. Police didn’t even bother to run his driver’s license, they just talked to him at the time and then sent him on his way. The other Vehicle already had damage on rear bumper, and since 3rd car had damage they felt it was just a fender bender. Looking at my car bumper you would think it was just a little tap from behind. In reality it was much different – the damage was done to my car by an incredible force from a pickup slamming into the stationary car behind me, who then slammed into me – also stationary. Even with my foot on the brake my car was thrust forward so far (approximately 8 feet) that after the accident I had to make a u-turn first in order to make a turn onto my destination street. I am trying to give the police the benefit of the doubt, but seriously they failed us all that day. The gal in vehicle behind me was sick to her stomach and her eyes rolled in back of her head. It was all very concerning. That gal said she had been looking left also.
We were all released from the scene. I went to work with a big headache. I could only manage 2 or 3 hours of work. The next day I was gardening – pretending all day to be fine after accident. I felt like I was moving in slow motion. I had errands and am methodical and it was so hard to figure out how not to waste effort or gas or get to the locations I had been to many times before with no problem. I had missed steps and didn’t know why.
I managed to get X-rays and an MRI the day after wreck. It showed I had vertebrae 4 mm into spinal canal. Lights around me and the noise from the MRI put me over the top. That propelled me into full symptoms. I had to ask the nurse to quiet down the loud noises. I was sent home to rest and follow up with a neck surgeon. I came home trying to find a neck surgeon. I was wearing a soft neck collar provided by my Chiropractor.
My entire life was turned upside down by an uninsured careless driver. I’ve only been back to the area where the accident happened five times. The first time as I approached the area my heart started pounding and racing so every time after I took an entirely different route to get to my final destination. Since that day I have been awakened many times because I was having flashback nightmares of the accident. I sustained whiplash, headaches, dizziness, and cognitive confusion. I did not rest as much as I should because I am a Type A Mexican jumping Bean.
I initially wasn’t able to walk after my accident. I gradually became able to, then over the course of about 2 weeks (until around mid July) I had involuntarily stopped being able to walk due to my muscles not working properly. The doctor I was seeing at the time informed me that they have never known a person to be able to reconnect back to limbs and I may lose my ability to walk completely and I may just have to accept that. This was obviously upsetting. All I could think of at the time was “be positive for me, don’t tell me how to feel, how to live, or how to manage my feelings”. Then I began to have some dark thoughts. I decided that if I am never going to walk again then I would just withhold food and water for 20 days and I am OUT! ( I would just let myself die). I was not interested in that life. I had to sit with that for a little bit (about 2 weeks actually). I totally understood where people say, “I am just not strong enough to do that”. I knew that I still had to have those feelings though. Give myself permission to work through all the emotions and grief associated with losing movement. It was important to give myself time to evaluate my life and what I wanted from it. I am grateful for that time of reflection. I want to be able to go to the bottom with people. Some are okay staying at the bottom and suffering, I was not. Eventually, I convinced myself “I will walk again!” and had to reteach my brain how to walk and it was a month long process.
For the next two weeks I had a very bad headache in the back left side of my head, my ear physically hurt plus had a ringing in it like a door buzzer on a car and I was very dizzy if I moved my head too fast or bent over at all. When I raised my arms over my head I had horrible prickly nerve pains all over my body, especially in my cervical spine and down into my thoracic spine between my shoulder blades. During and after a work day of cleaning and doing laundry I could hardly move my arms without being in excruciating pain between my shoulder blades, having numbness and tingling in my arms and shoulders and being in a mental fog/meltdown. Sometimes just standing in the kitchen fixing a meal or laying in the bed caused ice-pick feeling jabs all over my body.
July 13, 2021 my legs started bulking under the weight of my 130lb frame, note to self – better rest more I thought. I made efforts to take frequent breaks.
I am dedicated and devoted to my clients so I tried to put on a smile and show up when scheduled. It wasn’t easy. It got even harder starting the next week. On Tuesdays I did meal prep for three (sometimes four) of my clients, which usually took me 4 or 6 hours to complete. I am usually a sit down break taker even if I work 7 or 8 hours. However on July 13th that was definitely not the case. After about 2 hours I had to drag (usually could pick up with one hand and carry) a swivel metal stool over to the prep and stove area because I could no longer stand without my legs wanting to buckle under me. I felt like there was a weighted string attached to my tailbone that was dragging me to the floor. I managed to get the rest of the cooking and most of the cleaning done, but had to message my client letting her know I couldn’t stay any longer. I felt like I might not be able to get myself and the prepared food across the street to my car.
I was always in close contact with my clients. Communicating my health changes suddenly had become the new normal and necessary due to challenges in being able to complete the tasks I was scheduled to. I had trouble being able to pull up certain words, communicate in the way I used to, lack of ability to concentrate, and sudden lack of organization. My work ability had absolutely changed. Between July 13-17, 2021 this was becoming more apparent to folks around me. I made uncharacteristic cooking errors to the point that one of my clients voiced concern about me having a potential concussion. She thought that I may benefit from therapy for it and did not think it was just “brain fog”. She is an ER doctor and so I valued her input. She provided me information to the Barnes Concussion Clinic, and let me know I would need a referral. I was hoping my insurance would be accepted there.
Thankfully I was able to take the next day off, which served me well and honestly I should have used that time to rest at home, but I kept trying to push myself, and was still believing things would soon improve. Hallelujah – Sunday, July 18, 2021 – the annual weekend float trip my friends and I planned months ago that I obviously could no longer participate in, but I could go to REST and still be involved in the experience with them. I wasn’t letting this whole situation completely control my life. My friends picked me up (they had to carry my bags – how embarrassing). I walked to the car, and after the 1.5 hour car ride I got out of the car to stretch – BUT – I could hardly pick up and advance my feet to walk AND I had that sensation of my legs wanting to buckling under me. This was when people started noticing that something was wrong with me and I wasn’t right. I just kept trying to ignore it. Kind of like when you have the flu you know something is not quite right or an ear infection that puts you off center. The longer it went on the worse it got. Even the fogginess, cognitive decline, and losing track of time seemed to worsen with each passing day. I don’t recall ever in my whole life panicking in a medical emergency, that’s just not what I do. I convinced myself that my legs were just “asleep” from the long ride. In an effort to not panic and have my friends not panic I said…I believe they are “asleep/weak from the ride in an unfamiliar car. I’ll be FINE.” – AND tried to ACT FINE. – That didn’t work out so well. It was hard not to feel panic brewing when an hour later – nothing was better and nothing had changed. In fact, after the campfire that night I couldn’t even carry my folding camp chair.
I can normally pick up/carry 90 pounds easily and suddenly I couldn’t carry a camping chair? Ridiculous! Admittedly this caused a great deal of concern with me. I didn’t want to spoil the trip though, so I did not complain . My new limitations were glaringly obvious to myself and my friends though. I was still having problems keeping myself up because my legs we’re still trying to buckle under me.
Hooray… upon waking I was able to move my legs in any direction I chose while still in bed. RELIEF – my thoughts immediately went to “okay, so maybe I just needed to rest”. Then I went to get up. NOPE. When I sat on the side of the bed and still could hardly lift or advance my feet I knew something wasn’t right. Something was just terribly wrong. I sent a text to one of my emergency room doctor clients asking when was the best time for me to come to the ER when I got home on Tuesday, if I’m not better. She recommended waiting until the wee hours of the morning when it is less busy. OK. Plan. I managed to make it through the next couple of days by taking lots and lots of breaks.
Monday came and there was no improvement. Tuesday July 20, 2021 came and there was still no improvement. When I couldn’t pick up my feet to get in and out of the bathtub without physically lifting them to take a shower, I knew something was seriously wrong. But, I still did not want to alarm my friends.
I have been in this body for 57 years, but nothing like this has ever happened.
When we arrived at my home I unpack the suitcase and repacked it for the hospital. Late afternoon I noticed my arms were getting heavy and my neck was numb. Change of plan, go to the ER NOW! I suddenly couldn’t walk. I started to scoot. I dragged myself up the stairs and asked my neighbor for help getting my suitcase outside to wait for an Uber. My neck was completely numb and I had no feeling whatsoever. I was worried about paralysis. Uber driver asked for wheelchair at the hospital. ER transferred me from soft collar to stiff collar by nurse and numbness and neck pain was slightly relieved but not helping my feet that were also tingly and partially numbed.
I spent 30 hours there in the ER and 9 days in their Observation unit. I was in Observation unit until Wednesday and did not see a neurologist until Saturday.
My eyes stopped working independently and I couldn’t focus due to mideline vision shift issues – my elbow was willing to participate in directed movement, but my knee wasn’t; my left elbow and right knee worked better than my right elbow and left knee which wasn’t working at all.
Before I tell you about this part, please know I still have nightmares and flashbacks about my 30+ hour ER and subsequent nine day stay in the bright Observation Unit stall next to the bodily fluids utility sink – not on the Neurology floor in a quiet room either by the way. Apparently not only is a Traumatic Brain Injury invisible… so is the person who has the TBI.
I had a distinct taste of metal in my mouth and my armpits smelled like metal to me. I knew I had a spinal fluid leak. Inside your own body tastes like metal when that happens. Also when the liver is not functioning properly it can cause a metallic taste. A Sulphur test when this happens is helpful to gain a broader picture. Noone can smell it accept the patient. The most familiar example I can give is like a tin can that had been sitting around in water for a long time. I wondered if I was having Autonomic Nervous System seizures.
I was aware of my thoughts happening and then they would become frozen thoughts, like a paused video. When friends called me they said my voice sounded choppy. I bounced like Tigger when I talked and my vocal chords were affected and my stuttering and communication were gravely affected. In the beginning, random words would come out of my mouth. What causes this talk of foreign language I wondered. Sometimes still, my words are backwards and I notice a mild dyslexia. I found out the word issue was called Aphasia and it burned like an out of control wildfire.
Some providers said “we need to figure out how to make her legs work”. My legs would work when laying down, but not when I was up. I also had such severe whiplash it got to the point that I couldn’t hold my neck up.
When I finally got to see a neurologist, I told him my legs worked if laying flat and no pressure on neck muscles or back and he left me sitting up and lifted leg and let it fall 4 different times. I have never known the definition of “not try” in my life – yet he said I wasn’t trying. This was enraging to me. He said in a dismissive tone, “I heard you were going to have resources, have friends that are ER docs”. It felt like he was treating me like I was in a comedy show that wasn’t funny. I had to wonder, is it ever going to get funny? The neurologist wouldn’t look at my neck and he refused to diagnose me or provide me with a cause; he just wanted to send me home or to rehab. He seemed continually rushed and disinterested. I couldn’t go home because I couldn’t move, so that was not an option at that point. Newsflash! Rehab will not take you without a diagnosis. Eventually, I ended up having to fire the neurologist for medical negligence and abuse. I requested a consult with a different doctor.
That next day, on a Sunday, that same Neurologist I fired came back into my room while I was speaking to a chaplain. I called the nurse in and I made it well known AGAIN that I was not willing to work with him and had fired him the day before. I requested he not come back to my room. One of the residents came in and said, “can I examine you?” I said, ” not if you’re working with that guy out there!” The chaplain said, ” I don’t think you need us in here because you can self-advocate”. My friends were afraid I was going to explode. 2 days later a different provider came in and real testing began to take place with a new team. I could feel and hear on right side in head and middle, and left I could feel but not hear it. I kept confusing days. My ER Doctor friends wanted me to go to a Concussion clinic – After 7 long miserable days, I got diagnosed with PCS and neurological dissociation – my brain lost connection to my psoas muscles. The psoas muscles pick up your foot and move it forward. I spent 7 useless days in rehab, and the new neurologist said I had a concussion and PCS. They also said I had Neurological Disassociation.
I was in rehab at the movement clinic from July 30 until August 6th, 2021. The movement clinic guy wanted to know if Neurological Disassociation was even a thing? He didn’t know what that was. I don’t think the neurologist would say it was a thing if it wasn’t. Once I sat up it was like I was paralyzed. Only way to walk was to shift weight from one foot to the other to slide my foot so slowly and slightly. When using the bathroom, no weight could be on my butt or nothing would come out when I tried to do a bowel movement. The gals I worked with diagnosed me with gait apraxia at first. My legs were low functioning and there was no mention of anything neurological. I was sent home with with pamphlets for home health care that didn’t take my healthcare and no help or follow up. A friend stayed one night and I had to hop because I couldn’t walk., which was killing my neck. I figured out if I bent over a little bit I could slide my feet and if I bent 90 degrees over, I could walk normal. Noone every really diagnosed me.
I was also prescribed Amitriptyline.
When I went home from rehab I left my neck collar on and I couldn’t lay down without excruciating pain and would leave it on and go an hour or so with it off and lean my head back against the couch and then put it back on over a months period of time. Sometimes I would just go comatose and could not function. I knew something was not right. I called a friend to come over and I sat on couch with my bowl of yogurt and I started leaning over and couldn’t hold myself up. I froze in the position I was in.
After 6 weeks the Amitriptyline seemed to start working and I was able to teach my legs to walk again. Around September 1, 2021 I taught my legs to walk again by picking them up and grabbed under my knee and literally picked up and put down leg and knee until my brain learned and stomach muscles learned what to do. During this time I experienced an eye trauma and now I have several serious medical eye conditions. All the Physical Therapy facilities were scheduling months out and I was in no shape cognitively or visually to participate in group setting.
In October of 2021, I started rehab for my body and my eyes. When I first started treatment, the vision disorder was in full swing. Too much visual stimulation and I had to walk with eyes closed if hallway had a lot of doors. I would hold onto the walls as I walked to feel safe. It took a couple of adjustments to be aware when it was out again. I had 8 weeks of vision therapy. I had 3-4 weeks of brain therapy. I had to wear occlusion tape on my glasses – I had binocular vision disorder – this affects the peripheral vision.
I went to a couple of sessions with a counselor in St. Louis, Missouri and that did not go very well. It also didn’t work with my insurance. Sliding scale or someone to work with my finances for counseling. Not much love towards talk therapy profession.
In November 2021, I attempted again to return to my life. After all, I had bills to pay. I started working 12 hours a week, I soon realized that sometimes that was too much. I began my search to find the best visual, cognitive, physiological, and neurological caregivers. I began breathing therapy as well. Breathing change felt, day after Christmas.
I have had physical therapy, pelvic floor therapy, all my pelvic muscles were turned off by my brain when the accident happened. This affected my ability to void properly. Nucca Chiropractor treatments to adjust axis bone that holds my head up. First adjustment made me so flooded it sounded and felt like a toilet flushed in my head and I felt altered. Or access orthogonal chiropractor most people I know go to are improved.
I utilized Anton Vannelli – Musculoskeletal Therapy and limbic system therapy through ATHEQSYSTEM.com. Back muscles were doing the work of my abdominal muscles and pelvic muscles. This helped straighten my limbic system.
I joined a Facebook support group, and vision support group. Any appointments or providers that have actually been helpful to me I have had to pay out of pocket for as my insurance did not cover them.
When I think of what my biggest struggles have been this whole time, I would have to say getting back to work full time. I lost 1/3 of my income. Some of my clients just stopped communicating with me. Not being able to do work with the few I have left due to lack of stamina has been financially exhausting. I couldn’t climb stairs with my equipment that is not replaceable. The financial stress alone is stressful. I began thinking that at that point, I may have to sell my house and have been in the process of emotionally and mentally letting it go. I have had no financial support from anyone else.
The impact this had made on my relationships can be described as nothing else than “very traumatic”. The people that knew me don’t understand this new me and why I am more agitated with nonsense. How can I go from bubbly, happy, and talkative to Ms. deadpan? I am just different. Some of the people in my life have come closer and some pulled away or avoid me completely. I am intolerant of behaviors now that I wasn’t before. I have physically removed both friends or family from my life. I notice that I have begun to eliminate toxic people from my inner circle in general…people that do not support me. I think the trauma…. it was …it gave me courage to do the things that needed to be done, and I am not going to settle for mediocracy. Pie in the sky friends don’t work for me and I don’t have time for those people. If you know that about them and know you cannot count on them, it’s okay to move on. If you thought they would show up for you and then they don’t, yes it’s debilitating – however it is something that will define the type of healing I experience. I guess I am just choosing to engage with friends who give me hope, courage, love, and stability.
I have noticed that the friends who have stuck around I met accidentally. The ones “creeping backwards” or leaving are ones I had something in common with through mutual interests. Most of those interests I am unable to participate in or be a part of anymore.
The things that have hindered me the most is that the insurance companies that don’t cover needed care and have the ability to force us to have to rely on the medical community to get better. They don’t recognize practitioners that are actually helpful. NAP program is where you can have 1 provider a year out of network that gets approved (Cigna) approved office visits, but not therapy. We are negotiating getting the therapy covered. Insurance companies dictate how well we can be and that is very frustrating and the medical community isn’t much better. The medical community has doctors that have a dismissive attitude that just disregard what you are saying. They make assumptions without doing the actual work. They seek to mask the real problems by ignoring the cause of those problems. They keep trying to fit us in a medical model that is not working for our needs. Most providers are not trained in working with brain injury patients. The common statement I got was “most people are over it within 3 months”; Why are they shaming me for not being over it? I never understood that. It all just seems like a Ponzi scheme to me.
I wish I could just videotape my life to see how its changed.
Things that have helped me the most during all of this, involve trusting the universe to send me the people who were going to help me the most. Those were not medical doctors. Medical doctors did more to aggravate and agitate and undermine my recovery process. This was a disappointing realization.
The things I do now from day to day, to cope, deal with my body changes, includes a variety of things. Mostly I work part time. Lately I have been gathering up stuff I can give away before my house is sold and am sorting out what has value and doesn’t. Yes, I finally decided I am going to need to sell my house. I still needed creativity in my life so I created a quilt, I started a rainbow button project in 2018 and I have been committing time to that. I used to do that all the time. I used to do gardening and immerse myself with artistic expressions as my outlet. I was just trying to hold on to that part of myself.
Luckily, the work that the healers in alternative and integrative medicine are helping me with, has relieved a LOT of the pain and helped the nerve damage. Continuing those services will be paramount to my recovery. I still have brain “ouchies” (headaches) still, but that is being helped by brain limbic treatment.
I work with a body work practitioner from North Carolina. Being aware of my body and what to do is helpful. I use “tapping” as a resource for managing my stress. I utilize self-encouragement and mindfulness to calm myself. I tell myself, “I am safe, my brain is safe, it is safe to relax.” This eases my tension and my brain needs to know it is safe.
I have the gift of wanting to help people but now have a better understanding and a deeper level of compassion for people.
What I would like others who come into contact with my story to take from it, is to know that we are stronger than we think we are. We are absolutely worth every bit of effort and we are enough for ourselves without anyone else. I am enough for me. I want to encourage other to not let judgement or misjudgement of others affect how they view themselves. I cannot allow it to affect how I view myself either. That is one way to wreck yourself and tear yourself down is to get caught up in how other people think of you. Its okay to let go of people that are not supportive of you. You will know the people that are true to you after going through a trauma.
There is a difference between friends and acquaintances. Learn the difference and accept them for the position they hold in your life, even if that is not close to you.
I am telling my story now because I want to give hope. If you are curious…that is an important part of recovery. The curious ones get better. The ones who take an interest in themselves. The ones who do the research and ask questions to understand their body and better themselves. If we just accept at face value what we are told by the medical community, then, in my experience, they will lead you astray and I believe you won’t get better to the level that is truly possible. Not a reflection on them as individuals – just as a system overall. They are not in the business of healing patients, just collecting as many dollars as possible despite it all being at the expense of your health and survival.
Traumatized people or pre-traumatized people are easily traumatized and re-traumatized. Just because they have white coats don’t be intimidated. They are not God and when they do things to make us uncomfortable we have the right and responsibility to say no, or say so.
Healing my home and soul one molecule and vibration at a time. It has been a very long and winding road. Regrets I have a few. I REST now.
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