Confessions of a Concussed Cyclist: three-years post accident

August 19, 2017

It has been three years since my life changed in the blink of an eye.  Thirty-six months; one hundred fifty-six point four weeks; one thousand ninety-five days; twenty-six thousand two-hundred eighty hours of living with a traumatic brain injury.

Prior to August 19, 2014 I used to think that everything happened for a reason and that our paths in this world were already planned out for us.  I used to believe that our date of marriage, or the birth of our first child, or the day we would die, was already set in stone, and no matter how much we wanted to think otherwise, we could not change destiny.   There is a part of me that still believes this, but I’m much less carefree about it now. I romanticized this idea before, I never thought of the really bad things that could already be set in place. But now I wonder: Why me?  What did I do to deserve this? I think about that fateful day more than I care to, more than I’d admit to. If I could only go back in time. But what if your path is set for you? What if my cards said I had to get hit by a car on August 19, 2014?  I often say I wish I’d never gone on that ride, or I wish we’d taken a different route, or I wish “the driver” was not at the intersection of Hillside Avenue and Willard Street at that particular moment. There are so many things I wish I could change about that day, but if it was set in stone, if this HAD to happen to me, I am forever grateful that my brother was on that ride.  Within minutes of getting hit and being moved to the sidewalk, my brother was by my side. He nodded in solidarity as I said over and over again how angry I was. He listened as I complained about how much my body hurt. We even laughed together when we noticed the dent I had left on the driver’s SUV (I got a sick satisfaction out of the mark I had left behind). Later in the emergency room, we shared an egg-salad sandwich that a nurse dug up for me and we both naively thought I’d be fine and back to riding in no time.  We talked about when to call our parents, we didn’t have any information to share yet (the x-ray of my hip and shoulder and the CAT scan had not yet been completed) so we held off until we knew more. When we left the hospital, I had a craving for coffee, which he bought for me at Dunkin Donuts, but I never did drink it. It amazes me the details I remember from this night, yet in no time at all my memory would begin to fail me.

Year three was hands-down my hardest year yet.  My energy to fight the good fight disappeared. This lack of energy to fight back resulted in “setbacks” coming more and more frequently and taking longer and longer to recover from.  What little hope I once had that things would improve, gradually faded away. I worked with two neurologists (at two different hospitals, in two different states) and they both threw their hands up in the air, saying they were not sure what to do for my daily migraines.  I lost my job. Year three was the first time that words like “permanent” and “disability” were used in regards to my damaged brain. This was also the year that “PTSD” (post-traumatic stress disorder) was added to my list. Not at all to diminish anyone with a diagnosis of PTSD, but I’ve always associated it with a very horrific, traumatic event, and truth be told, as awful as my crash was, I never considering it to be “horrific”. There was honestly no gore left in my wake.  My brain took the whole impact, minus some road rash and a severely dislocated hip, on the outside I looked fine. Heck, my trusty steed was even in good shape (the guys at the bike shop teased me saying “Look Jen! We know you love your bike, but you could have let the Jamis take the hit instead of your head!”) I more thought of my crash as very bad luck (this goes with my life thus far, I’ve always felt like the walking proof of Murphy’s Law: “if anything can go wrong, it will.”).  But when the “diagnosis” of post-traumatic stress disorder was presented to me the first time, I just nodded and thought “it fits”. I began to realize it’s not normal to have the reaction to cars that I have, while on my bike. A car can be half a mile from me, turning, and my heart will start racing. There is no way this car will make contact with me, yet I will begin to panic. I crunch in every time a car passes me, trying to make myself smaller. Deep down I know this will not make a difference, but in my head, I think I’m doing my part to not get hit again. The year of the accident, I had started wearing a heart-rate monitor for training purposes.  After the accident I could no longer wear the monitor, because whenever a car got too close to me, my heart-rate would spike and it was skewing my data. Three years later, my heart still races and I enter panic-mode if a car does not give me ample room.

I have had three years of: neurological visits (where injections took place; new medications were introduced; symptoms were updated; the day of the accident was visited over and over again; tears were shared; frustrations were voiced; and next steps were discussed); therapies (cognitive, speech, and behavioral); medications (at last count I have tried over forty medications; most make me either very sick or spacey); alternative therapies (massage therapy, chiropractic therapy, acupuncture; aromatherapy; vitamin/mineral therapy).  I have had three years of daily migraines. Three years of being mentally/cognitively, physically, and emotionally exhausted. Three years of frequently getting visually and auditorily overstimulated. Three years of my body hurting. Three years of forgetting a conversation, mid conversation. Three years of feeling like my head was going to explode (and three years of wishing it just would so I could be done with this). Three years of drawing blanks. Some of you may read this and think “that happens to me” or “that’s just part of getting older”.  It’s not the same thing. I never forgot anything before. I never struggled with aphasia. Prior to the accident I would never just hit a black wall, where I couldn’t remember what I was doing, why I was doing it, or how to move beyond this black space. When it happens, I am literally stuck. Neurologically speaking, this means the information passing through my brain has hit a “dead area” and I need to somehow “re-route it”. In real life, in all sense of the word, I am confused and I can’t find a way out of it. It may take seconds, minutes, or even hours for me to “re-route” but until it happens, I am frozen.

Year three also brought a small form of acceptance (a very small form).  “Hi, I’m Jen and I have a traumatic brain injury.” Am I happy about this?  HELL NO! Have I resigned myself to being this way the rest of my life? HELL NO!  Have I accepted all my new limitations? HELL…well, I’m working on it. I have good head days and bad head days.  I have days where I accept this “new reality” better than others. I am now more willing to talk about it than I was a year ago.  I’m more willing to show my “true rattled brain colors” and let people see me on bad rattled head days. I’m no longer selective about who can read my Confessions or who can see my brain injury posts online; for the first two years they were only available to a select group.

Brain injury symptoms can present in many different ways and at many different times.  Right after the accident I was very dizzy (I literally could not hold my own head up and if I was sitting up, I needed my head to rest against something); my legs were very weak; and I was incredibly nauseous.  About a month after the accident the dizziness, weakness, and nausea went away although I do still struggle with standing for long periods of time and I find I prefer to rest my head against something (or at the very least lean against something). Sometime during the first year, “post-concussion tremors” began.  At first I didn’t know what was going on. There had been some talk with the neurologists about seizures and the first time my hands trembled I thought “this is it, I’m having a seizure!” I soon realized that my hands and arms tended to tremble more when I was tired (cognitively or physically). Although the trembling has gotten better this past year, it is still present.  What has now started in year three are my hands failing me (again, more so when I’m tired or overwhelmed). This hand-failure is not a tremor, it is a lack of strength, of grasp. It is pure luck that I even still have any dishes in my house because I drop them…a lot! I drop a lot of things. When I’m at Shaw’s and my brain is ready to shut down from all the noise and stimulation that comes with grocery shopping, it takes me multiple tries to get my debit card out of my wallet (“come on hands, I just want to get out of here, it’s too much, don’t fail me now!”) and then of course comes the fumble when the cashier tries to hand me the receipt.  My hands simply do not do what my brain is trying to instruct them to do. From day one my body has struggled with touch. Massages are great for the pain, yet even the lightest touch leaves me feeling bruised. For the first year after the accident, I couldn’t stand to be touched even a little; each touch felt like I was being stabbed. I now cannot stand if someone kisses my cheek and they’ve just put on lipstick or chapstick (it is the worst sensation to me). For a long time after the accident (and still occasionally to this day) I didn’t feel things on my right side the same way I felt them on my left (which makes for a bizarre feeling when someone is rubbing your back or hugging you!).  

From day one my neurologists and I have counted myself “lucky” that although I have daily migraines, they were never migraines with an aura.  Then this past winter/early spring my vision started to play tricks on me. It was almost like looking through a kaleidoscope. I couldn’t focus and everything was blurry.  When I first mentioned it to my neurologist, I got the notorious sad-smile as she said “well…you had been lucky up until now.” There is no medical reason why the aura started when it did.  Bad luck is my reasoning (see “Murphy’s Law” above).

I’ve had to learn that people have a hard time with things they cannot see.  In my case, the road rash has healed so there are no visible signs that something happened (if you know me well you’ve come to learn my “glassy eyes” are one sign that it’s a tough day, but to the average person, I probably just look stoned).  I’ve always wanted to think that people are patient, kind, and understanding to those around them, but now that I’m on the receiving end of reality, I see what I wanted to think is far from the truth. I look fine on the outside so why am I getting confused?  Why are my words failing me? Why am I spacing out? Even on a bad day when my balance is off, when I’m stuttering, when I can’t follow a conversation and I lose track of what I’m saying, I’ve been accused of being drunk long before anyone realizes I’m acting this way due to a damaged brain.  Even people that know me, that know about the accident, that know I sustained a head injury, are quick to harass me when I stumble or make a mistake. I hate to draw attention to myself, but at times I feel like screaming at people “be gentle with me…I’m doing the best that I can with a damaged brain.”

My mom recently asked me if it was hard for me to talk about the accident.  I think my answer to her was short, simply saying “no, it’s not hard” but what I left off is: what’s hard is people’s reactions to it.  With some people their jaw drops and they can’t believe it has happened to someone they are talking to. With other people, they immediately change the subject. Apparently it’s too depressing and uncomfortable for them to talk about.  Yet others get teary eyed and give me the sad-smile. And of course, there are the few people that say to me “I know exactly what you’re going through…I had a car get too close to me on the road once and I’ve been scared to ride my bike ever since.” To these people I roll my eyes and think “yeah…not even close to the same thing.”

Three years; thirty-six months; one hundred fifty-six point four weeks; one thousand ninety-five days; twenty-six thousand two-hundred eighty hours of living with a traumatic brain injury.

If it is true that our paths are set in stone, I really wish someone had done a better job planning out my course because I confess, I am not enjoying this route that I am currently on.