I know it’s been a while since Ben and I have made consistent posts, but life really started to ramp up and our days have become much more full and busy and that is a huge part of the reason I wanted to post today while I had a minute.
Words cannot describe how it feels to be over a year out from the accident. It had become such a defining part of my life that it feels like it’s impossible that this much time has passed. Conversations are slowly shifting from complete focus on injuries and recovery to normal everyday chatter and it is absolutely amazing.
For a while things had gotten somewhat out of hand. Everything Ben and I would do would be defined by the accident, but not by our own choosing. Anytime Ben wanted to move forward with his life someone would be there ready to say “are you sure you can handle that?” and allude to his leg while suggesting that he should wait until everything was “back to normal” to do anything… and I, on the other hand, with an extremely severe, invisible injury, was being told that I was being lazy because I hadn’t gone back to work yet.
Someone actually said to me one day, “well, with Ben’s injury and life long recovery it’s okay if you need to be the bread winner for a little while.”
Someone actually said this to me. Let me give this a tiny bit more context for anyone who does not totally understand severe Traumatic Brain Injury – I spent TWO weeks in ICU. I am extremely lucky that the swelling in my brain started to go down AN HOUR before they would have had to take a piece of my skull out. Based on MY injury I should not be alive, let alone be able to speak. The doctors actually told my parents at one point that I may wake up a vegetable. I had to drop out of engineering school because I can no longer apply mathematical concepts (it actually looks like a different language to me no matter how much I study and understand the concept/formula) and I am unable to process anything quick enough to keep up with the average college engineering course (even with tutors and extra help).
I want to be clear, I am testing FAR above where any doctor would ever expect me to test right now, and I am healing well enough to be passable as far as average mental abilities go… AKA I didn’t score below 50th percentile in my neuro-psych testing. Doctors and speech therapists have both shared the sentiment that I am “remarkable”, but I am no where near where I use to be mentally… and we don’t know when or if I will ever be where I was before the accident.
Before the accident I slept about 5-7 hours a night, I never opened a text book (yet had a 3.7 GPA in college), if I needed to remember something I could close my eyes and see a picture of what ever it was/where ever it was, I could work 30 hours a week WHILE going to school, and I had a future career planned out and was on track… since the accident I need at least 9, but usually 12 hours of sleep a night, I cannot picture anything in my head and I actually don’t know where my memories come from or where to find them when I need to think of something, I am not allowed to work and couldn’t anyways due to migraines and mental fatigue, and I NEED to read everything for every class and go over it at least 3 times to have a chance at remembering it.
I work hard and don’t complain, so it may look like I’m totally fine and I may seem as though I am just as capable as everyone around me… I am not. You can drive somewhere you don’t know very well and it will be a little stressful, but you’ll be fine… if I do that I won’t even have enough energy to get out of the car when I get to where I’m going. You can study for an hour or two and then go out and hang out with friends and then do relatively well in the class… I can not. If I do anything else after studying I’m not going to remember anything and even if I could, I would be too tired to do anything but sleep after using my brain. You can workout really hard and then go about your normal day, but if I do I will go home, throw up, and then have no energy for the rest of the day.
My injury is not minor, or less important, or even close to completely healed right now. I would rather go back and have every surgery in my life redone at once than go through each day trying to pass for normal because it’s expected and if I give anything less, for even a second, I am lazy.
Thankfully, I am not the type to let others define me or my life. You can bet your ass that I still plan on being successful and I still plan on making lots of money doing something super cool with my life (since I was never planning on not being the “breadwinner” because this is 2017 and I don’t need to be helpless). What gets me fired up about this topic is that there are a lot of other people going through similar, if not more difficult, recoveries who are being treated this way. A Traumatic Brain Injury is a severe injury even though it’s hard to see, and people recovering from them are often treated like they have nothing to recover from.
The absolute worst part about all of this is that we live in a society that is so incredibly conditioned to believe an invisible injury is not serious that even I question myself when I can’t get out of bed some days. I tell myself I am just being lazy, and I try to push through and I only end up making myself more sick to the point of vomiting, positional vertigo, vestibular problems (double/blurred vision), and migraines that don’t go away just by going to bed.
Life moves forward. I will always push myself to pass as average, if not extraordinary and when I do it does not mean that my recovery is over… but when I can’t it does not mean I’m being lazy. I am relearning all of my academic, social, and intellectual strengths and weaknesses and it will be bumpy, but having support for an injury that no one can see means the world.
Thank you so much for reading and supporting,