Confessions of a Concussed Cyclist: a harsh reality

November 29, 2016

About thirteen months ago, my work schedule changed.  I began working fewer hours in an attempt to help my rattled brain heal.  About thirteen months ago, the comments started. Comments such as “must be nice not working full time” or “I wish I was you”.  Let me be clear here…you do NOT wish you were me! Me working reduced hours or me not working at all, is not a vacation. If you view it as such, you have a poor definition of holiday.  Please do not ever romanticize what I am dealing with 24/7.

I partially blame myself for people’s lack of understanding.  I hide what I’m going through a lot and when I can’t disguise it, I hide from you!  You often won’t see me on bad days. I hide away because it’s embarrassing and frustrating to try and function in a fast-paced world with a slow-processing brain.  Brain injury is already a lonely world, made more lonely by hiding way because it’s all just too much to tolerate. If an award was given for the best actress pretending to feel okay,  I like to think I’d be a shoo-in.

Before I get too far into this, let me preface this Confession by saying that my pain is high right now, which means my patience is low.  I have not responded to any pain medications since August. And let me be clear here, when I say “responded to” that does not mean the pain was gone (it’s never gone) but it was tolerable.  I could function with it. I could fake my smile easier. High levels of pain, day after day, week after week, month after month, is draining. It is something I do not wish on anybody.

For those that struggle to understand what you cannot see; for those that read my words but they still don’t sink in; for those that have romanticized the idea of a brain injury and think it’s a relaxing vacation…I’d like to set the record straight.

It is impossible to put it all into words.  It would take me months and months to write down every little thing that I go through, and let’s face it, no one would read that.  But I need to at least try to draw some awareness to this life. This life I didn’t ask for. To this life, that a few people have “wished for themselves” (and trust me…if you had the slightest idea of what you were saying, you would not say it!).

It has been twenty-seven months since the accident.  Twenty-seven long, lonely, frustrating, painful, months.  In those 27 months, I have consumed more medications than in the 32 years prior.  I have been more frustrated, tired, emotional, stressed, angry, sad, and in more pain, than I ever thought possible.  Yet I have never forgotten that it could be so much worse.

You can’t shut it off.  It is always with you. The sensitivity to light and noise.  The pain. The overstimulation (visually and auditorily). The fatigue (you don’t know tired, until you know brain injury tired and this is coming from a teacher!  I used to think end of school year teacher tired was bad enough). You need tough skin because you will be the butt of many jokes (some days I can laugh at myself with you…but every time it feels like I’ve just been punched). You need to battle with family and friends that say to you “I can’t possibly understand what you’re going through.” and although that statement is completely accurate, there is nothing that says you can’t try to understand.  That you can’t ask questions or do some research. I am always happy to answer questions. Just don’t minimize what I say or respond with “oh yeah…I know…I get headaches too.” (or something just as asinine because the conversation will end quickly).

I had a doctor once say to me “how much sleep do you get at night?” I answered with “about 12 hours” to which he replied “must be nice!  I wish I could sleep that much!” to which I then bitterly responded with “get hit by a car and you can!”

I’ve had friends say to me “must be nice not working.  I wish I could do that.” Well friends…I’ll switch places with you in a second.  Trust me…you don’t want this.

I’ve had people say silly things like “I forget things to” or “I’ve had a headache all morning…I want to die.”  It’s-not-the-same! You being tired, you forgetting things, you having a headache for four hours…it’s not even close to being the same thing.  You have to trust me on this. I’ve had people mock me when my words fail (t-t-t-today Junior). I’ve had people make jokes at my expense when I say the wrong words (what do you mean I just said “I take magazine at night”?  In my head I said “I take melatonin at night.”) I’ve received funny looks when I draw a blank mid-conversation (what were we talking about?) I’ve wanted to walk away from my cart in the store because I literally CANNOT handle one more noise or one more visually stimulating thing.  My brain is shutting down. Yet, even if you walk away from that cart, the noise, the visual stimulation still remains. Cars passing by, buildings in the distance, traffic lights. I often feel like the Grinch “There’s one thing I can’t stand…all the noise, noise, noise, noise!”

Today my day started around 3 am because my head hurt so much I could not get comfortable.  Finally around 7 am I was able to fall back asleep. This disruption in my sleep can have harsh consequences.  I then slept off and on until after noon, before I needed to rise and get ready to make the trek in the freezing rain, down to my neurologist’s office.  Getting ready was exhausting enough, but it’s not like I could go back to sleep, I needed to travel to Dartmouth. Once at the doctors, she reviews my “daily headache chart” and just shakes her head.  Nothing is working. What do we do next? We try yet another medication. And like so many before, this medication comes with a warning I must heed: “this medication will make you sick! So, ease into it.”  All these pills, these shots/injections just to try and make it so I can function with never-ending pain.

Side effects.  Overstimulation.  Nausea. Fatigue. Pain.  Mocking. Teasing. Rude, ridiculous comments.  Short-term memory issues. Aphasia. Poor depth perception.  Slow processing. So desperately wanting to feel “normal” again.  All day every day.

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Why in the world would anyone say to me “I wish I was you!”?