Confessions of a Concussed Cyclist: one thousand days with a Traumatic Brain Injury

May 16, 2017

Everything changed in the blink of an eye!

My life is now divided into two sections: pre-accident and post-accident

Over the past one-thousand days I have read many comments, articles, and blogs by individuals with head injuries and many of them have stated they feel their head injury was actually a blessing in disguise.  One-thousand days post accident and I can only see this as a curse. I have not reached that level of acceptance to be able to see it as anything else. I still have so much anger in me regarding that day. Anger at the driver that couldn’t wait ten more seconds before turning.  Anger that this driver felt her time was more important than mine.

A fellow TBI survivor and roadie posted a few months ago on Facebook that he often passes the place where he too was hit by a car while riding his bike.  I have never returned to the scene of the crash and truth be told, I never want to. I know exactly where it happened. I remember the day so clearly. I cannot think about that day without getting tears in my eyes (heck, I cannot write or reread a Confession with crying). I don’t think I have it in me to return to that intersection; I think it would all just be too much.

There was a settlement case against the driver that hit me.  As part of the settlement, I wanted to have a sit-down conversation with the driver, but of course this was not allowed.  There is a part of me that hopes she’s seen these Confessions. That she realizes because she chose not to obey the rules of the road, my life has been forever changed.

I’ve had one-thousand days to adjust to my “new normal” and truth be told, I have not adjusted well.  I still deny it. I still fight it (although to me, fighting it is a good thing). I still get frustrated by these “new” limitations.  I still miss the “old me”. I still flounder. I still learn. I still suffer the consequences when I do not listen to what my brain is trying to tell me.  I don’t actually like the person I have become, yet so much of it seems out of my control. I can’t help how my brain now functions. I can’t help the amount of fatigue I deal with on a daily basis.  I can’t help that I get lost easily in conversations or that I don’t fully understand all that you’ve said (although, truth-be-told, I’ll pretend that I do). I don’t like that I often misunderstand the meaning of what you’ve said (sometimes to the point of it hurting my feelings); however, I am always thankful that I can replay the conversation to Brian and he can clarify it for me (in Jen’s rattled-brain-terms).  I don’t like the uncertainty of my future (Will I return to teaching? Will these migraines ever end? Will the cognitive issues improve?).

I’ve lost friends since the accident.  Some claim it’s because they no longer know how to talk to me.  I think some left because I’m not the same person. I’m quicker to become frustrated. I’m more apt to cancel plans (or not make plans in general).   I no longer find sitting around a table, with a group of friends, having a glass of wine and chatting to be so carefree…I find it stressful, overwhelming, and exhausting.  I can’t always trust what comes out of my mouth; in my head it makes sense, but then I get a funny look or a teasing comment and I realize the words leaving my mouth did not match the ones in my brain.  I must take the laughing and teasing and try to roll with the punches.

It’s all too much to deal with day in and day out!

Brain fog. Neuro-Fatigue. Overwhelmed. Post-Concussion Tremors.  Exhaustion. Abnormal and irrational fears (that part of my brain that tells me “don’t be scared” no longer works). Short-Term Memory issues.  Depression. Multi-tasking issues. Speech issues. Pain. Processing issues. Blurred vision. Lack of education and understanding from friends and family.  Walking around with something that is damaged, yet people can’t actually see it. Doctors call the damaged parts of your brain “dead”… “these dead areas…”…I hate that term.  I hate thinking that what should be healthy and functioning now has “dead” sections.

I get very frustrated when someone asks me about my symptoms and then they respond with “oh that’s just part of getting old” or “I get that too!” You need to trust me when I say “IT IS NOT THE SAME THING!”

I miss the old me, the person I wanted to grow up and become.  I miss the dreams I used to have. I miss being carefree with my friends, staying up late laughing.  I miss conversations about anything and everything (I may forget what is discussed, now). I miss the endless energy to exercise till my hearts content.

I am no longer able to answer simple riddles that my eight year old niece and nephew throw at me…my brain doesn’t work that way anymore.  Kids don’t understand but it still hurts when they laugh at their silly “T” that can’t answer a little riddle.

I was out for a bike ride the other day, going at a nice clip, but the shadows were heavy on the road, wreaking havoc on my brain.  Dark, light, shadow, light, dark, light, shadow, light…moving faster in and out of darkness than my brain could comprehend. Making we wish the ride would end right then and there.  I needed to look as far ahead as possible, preferable at trees (not a great idea in case of dangers in the road) to give my brain a rest. I was about six-months post accident when I realized how slow I was to process light changing on me.  I was at the Ice Castles down in Lincoln, NH and these colored lights that lit up the park were slowly changing (slow light changes are not an issue) but then the lights went out completely to start the cycle over. I stumbled and broke off an icicle hanging on the castle.  There were signs everywhere asking you not to touch the structure! One of the workers saw what happened and I apologized profusely. He was very kind and told me not to worry, then told me how often the lights would begin the cycle again, so I could be on guard. A few months after this, I learned that flashing lights were also out of the question, as I had to “watch” my nephews recital with my eyes closed due to strobe lights.  This is what happens to a faulty-slow-processing-brain…my brain knows it’s light, but when it goes to dark it takes a while for that to register and quite often by the time it has registered the dark, it is light again.

This past winter I was hanging out with someone that I met post-accident.  From day one I admitted to having a head injury (something I never used to do) and whenever he asked questions I always answered them honestly.  One night he asked me “will you tell me if you’re not feeling well?” and without missing a beat I looked him square in the eyes and I said “No! I’ll hide it.” That’s the story of my life…I’ll hide it because despite people asking, NO ONE wants to hear 100% of the truth. It’s too depressing.  I’ll downplay the truth when you ask; I may even flat out lie to you and tell you “I’m fine” when I’m not. I’ll even change my wording to “head injury” because for some reason that term doesn’t make people as uncomfortable as “brain injury” does.

Day one-thousand.  Day one-thousand living a life with something I never thought about one-thousand and one days ago, yet now it’s the only thing I can think about.

Months ago, one of the TBI groups I follow on Facebook, put a post up asking “if you could attach a warning label to people with a brain injury, what would it say?”  I responded with “Handle With Care”.