It's Been Awhile: Where have I been? I'd like to know too: Navigating life with a Traumatic Brain Injury

Hi friends.  It has indeed been awhile. This first post will be lengthy.  Riddled with errors and probably nonsensical and scattered. If you are still out there, I hope you will read my words once again. I hope you know how much I love you and have followed your lives on social media like a bystander looking in hoping to gain the courage to reach out.  Silently wishing you knew that I was cheering you on through your successes, crying with you through your losses, hearing all of your joy and pain and laughter and being literally unable to speak or interact at times. I have watched from afar as so many people I know have enjoyed great successes, crossed important milestones and suffered deep and agonizing losses. I have had dear friends, 3 ride or dies of mine that have lost their lives to cancer, to heart attacks, to other sudden and unforeseen circumstances this last year. I have watched as the world has become a place of hate and anger, ignorance, intolerance, injustice. I know we are all baffled by the level of civil unrest, inhumanity, and uncertain times we are all witnessing. 

I have been quiet.  I have been absent. I have been less than a friend, less than a comfort, less than interested, less social, less present for all those that I love and even more sadly for myself. I've missed birthdays, anniversaries, funerals, memorial services, births, holidays. I've spent every holiday since last August including my birthday alone. I do not get invited to social gatherings anymore or very rarely. I'm kinda socially awkward now.   I have retreated for many reasons and there isn't any one person that knows my complete and entire story this past 10 months. I have had so much to say for so long but my words have failed me in the ways they used to serve and heal me.   I am finding my voice again and it's time to start sharing my story. I don't write or speak as eloquently as I once did and it takes me hours/days/weeks to form emails, messages, or make phone calls. When I don't feel like I am in a safe place with people I trust, I simply just shut down. 

I often struggle to form sentences, thoughts, to do more than one task at a time. I ramble and repeat myself and many times struggle to ever get my point across. The words that come out of my mouth and the words I see when reading or typing are backwards or jumbled or just out of order. I backtrack through every thing I do in life. I am forgetful and live by a written calendar. It's amazing that is the one thing I have not physically lost. Why has all this been happening? Three little letters in many forms that add up to one big mess: Someone else's DUI=MRI + DTI=TBI more specically DAI. And here is where it begins.

On August 11, 2022, a clear and beautiful night on my way home from work, I was forced off the road by an intoxicated driver, leaving me with physical, mental, emotional and financial pain and suffering along with damage to my body, my teeth and the eventual devastating diagnosis of a traumatic brain injury. The type of brain injury I sustained that night is not detectable on a standard brain MRI. If not for my second and current kind, knowledgeable and caring lawyer(my first could not have been more cold and uncaring) realizing my delicate and precarious state of mind and physical and cognitive disturbances, I would not have known to undergo a DTI. For those of you needing a clearer definitionlike i did, this was the easiest for me to wrap my injured brain around.  

https://windsorimaging.com/what-is-diffusion-tensor-imaging/

It was over a month that I was literally stumbling through life in pain and confusion before my DAI diagnosis(diffuse axonal injury) was discovered through this DTI. So what is a DAI? That was a shitstorm I was not prepared for.  Even after the diagnosis, I had no idea how much of my life and abilities to live it freely, functionally and without fear and struggle would be impacted. Again, for the uninitiated, a DAI and the many complications I have experienced are detailed in the following article from Johns Hopkins Medicine website. If you google DAI, you will find much more information that you might not want to know.  https://www.hopkinsmedicine.org/health/conditions-and-diseases/traumatic-brain-injury 

Here is a Video that simplifies it as well that is about 4 minutes long if you have the time or energy to look through it. 

Because of this, my life has been quite chaotic, scary and frustrating. Which is the way life goes sometimes but this is yet another lesson i didn't need to learn. I am scared and angry and once again my future that was transforming finally into something good and fulfilling is now hanging in the balance. I will always have some sort of cognitive impairment even if on a minimal level assuming I can get the treatment I so desperately need that is not covered by the ass backwards Florida "no fault auto policy insurance" laws. Yes, I have an attorney and a great team of doctors finally but we are all limited by funding and in many ways my care is on hold pending whatever small settlement may come in an eventual civil suit in addition to a demand to both my own insurance company and the insurance company of the asshole who put me in this position.  The bulk of that will go to pay back my amazing team of doctors, my dedicated lawyer and my insurance company. Did you know you had to pay back your own insurance company for benefits received out of any settlement from a criminal or civil suit they paid you that you have been paying for since you ever could even drive? What is the point of carrying insurance if you have to pay back what you are paying to be insured for? At least in a no fault auto claim state like Florida. It's preposterous to me. 

Because of the complex details of my accident which I will over time share more specifically in future entries, the state of Florida has removed me as a victim in their criminal case against my offender because our cars did not actually collide.  This drunk driver came flying at me in my lane against the flow of  traffic after speeding through a roundabout while intoxicated.  His vehicle crossed the median,  hit a tree at a high speed, forcing me to take evasive action missing him by inches to less than a foot and fly up over the curb to avoid a head on collision that may have left me dead or fighting for my life. It resulted in damage to my teeth, body, emotional and mental capacity and my brain which is a key factor in healing all these other things and is now unable to function at full capacity. Take a moment to look up DAI again. A DAI(diffuse axonal injury) is the same type of injury sustained in deaths resulting from shaken baby syndrome.   A minor DAI is what i still suffer from. A moderate DAI usually means coma. A severe DAI more than often ends in death.

How is it that I have been erased as a victim of a crime? I called 911. I waited for officers at the scene that handled things poorly as I've found out over all this time, erasing me as a victim by their initial inaccurate reports. I had just suffered an unknown brain injury and learned too late that the write up on the officers reports were not as they should have been.  I watched this other person emerge from his vehicle with not even a concern for my well being.  I fought to be added to the crash report which I found out the day after the accident I was not included in as an interested party. I've since learned the crash report is not admissible in court, just the inaccurate officer's reports. How is this fair or possible?   

I have been  called to be the wheel witness for the state of Florida against this person in criminal proceedings, allowing him to plead down to a lesser offense. This means he will more than likely walk away from a  felony DUI conviction, leaving me with nothing to gain in tens of thousands of dollars in lost wages and out of pocket expenses not covered by Florida auto insurance personal injury losses.  My dental payment alone is $450 a month.

In order to recoup these expenses from the Florida Victim Compensation Board, the offender would have to have caused serious bodily injury to someone and be convicted of a felony DUI.   Ummm, hey Im here!! I more than qualify.   I began stuttering in the following weeks to months , slurring my speech, dizzy, nauseous and vomiting,  terrified at not being able to verbally communicate, experiencing migraines and nosebleeds, extreme neck and back pain,  peeing myself from urinary incontinence, unable to understand simple questions, constant ringing in my ears, numbness in my extremities, sensitive to lights and sounds, with worsening vision, depth perception and peripheral vision issues.  Spatial awareness problems freak me out. Panic attacks were unexpected and frequent early on and still linger to extent. I still struggle with head pressure, balance, tasking/executive function, muscle atrophy and weakness, neck/back pain, confusion and short term memory loss and that's not even close to all of it. The difference between up/down, forward/back, left/right commands cause me trouble.  Among so so many other things that I will try to detail in upcoming entries.  I hope some of my dark humor that accompanies a damaged and fighting to heal brain will give others that are struggling feel a sense of inclusion. 

So Yes, they want me to be a witness, but not as a victim of a crime committed.  It is apparently the consensus that these were somehow two separate accidents because our cars did not touch each other(no fault state) and that the injuries I sustained were in no way a direct result of the negligence of the impaired driver that almost took my life. According to the state of Florida, I am just someone who saw this happen but did not suffer directly from the negligence of this reckless impaired driver who in 15 seconds wrecked my body, brain along with my social and financial livelihood. As of April 1st at the 8 month mark,  250 plus chiropractor, neurologist, dentist, orthodontist, audiologist, psychiatrist, opthamologist, lawyer visits in 240 days comprised of maybe double that in hours and I am not a victim? Florida has failed me. This "no fault state" has been the definition of injustice, a source of disappointment and has made me feel invisible, unheard and very very vulnerable and angry in a time I should have been healing and not constantly scrambling for support. Had fate been left in the hands of my offender, had i not taken action to save my life in those few seconds, I have no doubt I'd be even worse off than I am. Of all the things I've been through, this was the first time I actually saw my life flash before my eyes and was sure I was going to die in that exact moment. It is an indescribable feeling. 

I will share the testimony I have detailed of the accident and aftermath in a future entry. Everything I have and continue to experience. I will probably repeat myself many times because that's what I do now.  9 months later, my head pressure continues to build when i bend down to shave my legs, when i try to exercise,  type or read or have to focus on daily tasks that were once so simple. Reading, writing, exercise, dancing it out are all things I struggle with now, all the things that used to be my escape. I miss being physically fit and able bodied to the extent I was before. I have post it notes all over my apartment reminding me to brush my teeth, turn off the stove, check my laundry, wear deodorant.  I wear my keys around my neck on a chain and often still struggle to locate them. I have aligners on my teeth because they all shifted and a few chipped during the accident.  I spent 5 intensive days of brain therapy at the end of April at the brain lab at Florida Surgery Consultants in Tampa which is a small fraction of the amount of the therapies I still need to come close to recovering my balance, vision impairments, many cognitive impairments,  sleep disorders, overcome my anxieties and have a chance at thriving and not just barely surviving. I spent those days in hyperbaric chambers, cognitive assessments, vestibular therapy,  virtual reality sessions, treatments such as TMS, Gammacore, Fisher Wallace, biofeedback, nuerofeedback, trigger point therapy, etc, etc.

 My QEEG in April compared to November revealed that I hadn't made much forward progress in certain areas, some improvement in other areas and that I was still considered to be in a moderate to severe post concussive state. But still not the victim of a crime. Baffling.  I will begin using the

 Fisher Wallace device when it arrives this week to help combat anxiety, depression and sleeplessness.  I'm fighting with insurance to get my chiropractor and TMS therapy covered because my insurance does cover these doctors, but of course my insurance company is fighting me on coverage.  I still need 35 more hours of hyperbaric therapy which is not covered by insurance and is a hefty $200 an hour. I have regressed in the last weeks in certain areas and I need these therapies to recover as fully as possible but the funds just aren't there. I'm terrified of further relapses and doing further damage by not following through with treatment. I am clumsy and fear re-injury if i were to lose my balance or hit my head again. I desperately want to get better.  I am tired of life passing me by.  The last nine months have been the loneliest, most isolating and confusing times I have ever experienced. I may look silent, but am screaming inside. For peace, for justice, for understanding, for human connection. What is life without human connection? It is a vast and terrifying wilderness. 

I haven't worked since mid October. It's hard to be in the hospitality industry when you have trouble speaking, swallowing, balancing, and look confused and distracted all the time.  When you can't remember what you are doing and are constantly dropping things and bumping into walls. When you don't remember words or names of objects. I have managed to barely stay afloat by spending any savings, maxing out credit cards, selling possessions, small gifts from the few friends that followed through in checking on me after I reached out, my family and some limited community resources. Each month there is the stress of avoiding eviction when i should be focused on healing and recovery. I have wrestled with the idea of applying for SS disability benefits which wont even cover my rent and will leave me with half of my full retirement income with no chance of ever going back to the higher amount even when i am able to come off disability which I know is more than possible  if/when the stars align. This process alone will take months to approve assuming i get approved and by then I may not need it anymore best case scenario. I guess half is better than nothing but reality bites in the long run.  It is recommended I complete an additional 30-35 more days/hours of hyperbaric treatment and TMS therapy, along with continued chiropractic, self care including physical and cognitive exercises. I have many more months of dental payments ahead of me. Follow up brain scans and another QEEG to determine the level of success i know I can make if I can find a way to receive the expensive care i need as quickly as possible to get my life and health back and begin to pick up the pieces of my very confusing and exhausting present state. Healing is possible and I want to heal. 

For now,  I need support and I need people to check in. I don't have a huge support system in place here in Florida and I have felt incredibly alone navigating this process. My dearest friends, my family, my dog are all distanced. I have distanced myself from a social life here for the most part because it's just been too much work to reach out at the end of exhausting days, through physical pain, brain fog, neuro-fatigue, every sort of exhaustion. I am still me. I'm still funny a good portion of the time and can find moments of joy and escape. Yes, I'm harder to understand at times, I can be more easily irritable, things that come out of my mouth often don't make sense even to me. I need people to speak more slowly, I get overwhelmed answering questions and I panic with last minute changes in my routine when I used to be so carefree, easygoing and adaptable to change. 

 However, I need and long for company. I need to take walks, watch sunsets, listen to music, play games,  and enjoy as many social things as I can handle. I also need more rest. How can one rest in a constant state of uncertainty? How far can I bend before I break?  I need help organizing and staying on task. I need friends to call, stop by, visit me if you need to be by the beach for a few days, laugh with me and talk about our combined daily life stuff. I know I'm not the only one with stuff.  It's way past time to share my story because I need y'all to know why I've been MIA.  I am not ok and the injuries I sustained were no small thing. Most people think because I look ok that I am ok. They do not see the panic in my head as I try to navigate thinking and speaking clearly, trying to avoid falling, bumping into things, dropping things. They don't see me lying for hours or days in bed as my head throbs and I experience  catatonic time lapses that sometimes last for hours, even days.  They don't see the panic of lights and sounds or know that it takes me days to a week to recover from one social event or concert I attended in an effort to feel anything close to what my normal used to be. They don't see me panicking in a store unable to function because there are too many colors, too many choices, too many outside sensory overloads. They don't know that I stare at my closet and drawers and am overwhelmed simply choosing what clothes to wear.  They don't see me freaking out because I can't organize my house the way I used to. I'm embarrassed at how things are always so out of place. All or maybe most of these things have improved to a degree, but there is still much work to be done. 

I'm learning that much like my battles with anxiety and PTSD which on top of a brain injury create the perfect storm, traumatic brain injuries and neurological disorders are very misunderstood and isolating.  I did not want to know the reality of these things or get a close up view and experience things that I'm learning through research many suffer from. Neurological  and brain disorders that are unseen have left me shocked and appalled at the treatment I have received from many people. I have experienced personal and medical gaslighting to its fullest extent by strangers as well as people I used to consider friends that have all but dropped off the face of the earth even after I tried reaching out when i felt strong or brave enough. I've been called too emotional, too sensitive, to impossible to talk to or deal with. My left lobe was impaired during my accident and this is the part of my brain that is responsible for regulating emotions, decision making, rationalizing, compartmentalizing, organizing thoughts. I've been accused of "playing the victim". Isn't having your entire health and livelihood being wrecked by the negligence of another through no fault of your own the definition of a victim? Where has kindness, compassion, empathy and understanding gone? I'm thankful for the few people in my life who have answered my calls, continued to talk and laugh and support me through navigating this impossible uphill climb. You know who you are and I am eternally grateful. I have felt completely abandoned by others but true colors and true friends emerge in dark times and that's certainly nothing new to me. 

I would suffer any illness or injury I've suffered in my life that had a clear end in sight rather than suffer a brain injury with no clear timeline or guarantee of healing. Cancer, shattered bones, witnessing the suicide loss of my husband, navigating pandemics, unemployment, tornadoes, hurricanes, PTSD, anxiety, widowhood, all of these combined are so much easier to understand why they are affecting you than the sudden and uncontrollable loss of my cognitive faculties and the downward spiral of a damaged brain. Just saying that is so messed up.  I don't even know who I am anymore. I see my run on sentences and grammatical and punctuation errors and I long for my ability to speak, read and write clearly again. I want to ride my bike, ride a rollercoaster, run up and down stairs all without fear. I want to remember what I was just about to google and not wonder if it's possible to google what were you about to google. I want to work, to contribute, to travel, to rest my overloaded and understaffed brain. I want to stop peeing myself and falling into walls, bumping into things. I want to stop being socially awkward. I want to be free of physical, emotional and financial suffering. I know I'm not the only one who says or feels this on the daily, but I have to use my voice and not be silent anymore. I have to speak my truth to feel like I am heard.  I have to stop feeling less than because I can't do the things in the same ways I used to. I have to speak for all of us with brain injuries that are tired, confused, misunderstood and made to feel vulnerable and scared walking around the world.

My eyes are tired and if you managed to make it this far, then so are yours. Thanks for reading. This is such a long entry and I don't even know if I got my point across. To sum up, if i had a cupcake, I'd shove it up the combined asses of drunk drivers, mean people, brain injuries, the Florida no fault insurance system, this inflated economy, run on sentences and a completely messed up judicial system.

Stay tuned.....and stay safe out there, peeps. We all know what a weird and messed up world we are stuck in right now. Savor the moments of happiness and peace you get. Rejoice in the small things, the good things, even if it's just managing one small task in a day's time.  Be kind because kindness is free. Spread that crap wherever you can. Check in with each other. Support one another in whatever way you are able. Do not judge what you do not understand.  I'll check in as soon as I'm able to compose another entry. This one took me a month.  Off to worry about everything.