Monday, June 10, 2019

I Can't Be Fixed

For those of you who are unaware on April 1st I suffered a seizure caused by a blood sugar reading of twenty three. (If you aren't up to date on your medical information that’s the lowest of lows. ) Thankfully I was not alone when this occurred, my Mom was immediately able to get me the help I needed so I was only unconscious for ten minutes, but unfortunately I did not walk out of this event unscathed. I have been left with a brain injury that has affected my ability to read, see, memorize, concentrate and speak appropriately (and more). More than two months later, we have continuously struggled to keep my blood sugar at a stable level and medical professionals have been unable to determine how and why this has only recently begun to happen to me. While trying to figure out how I was going to proceed with recovery I decided upon pushing through the last few weeks of my junior year of college and then worry about my health. I told my medical team, friends, family, professors, followers of my story and everyone alike that this would be the summer of fixing me; the summer of fixing me in order to make me, me again. However we are now a month into summer break and I have not seen any signs of fixing occurring here. Only now am I beginning to realize that “being fixed” is not a real thing?
Heading into this summer I thought I was repairable. I thought there was something out there that could make me into the person I was before this traumatic experience happened to me, something that would make me feel like me again because through this whole brain injury thing I have not felt like me. However I have since learned I can try to heal and mold into a version of my self pre-trauma, but that replica will never quite be picture perfect, just like a vase when one glues the broken pieces back together.
Have you ever heard of the logic you can’t fix what’s not broke? I first believed I can't be fixed because I am not broken. There is nothing wrong with me. I am not damaged goods. I am not the fragmented pieces to a mirror after it has been shattered. I am an almost twenty one year old flooded with dreams and plans to THRIVE, living within a broken body failing almost as fast as ice cream melts in the summer sun. In general that’s one of the hardest parts because I know I am not broken, but I know for a fact I am not a typical young adult. This disease is the iron shackles on my plans to explore what this world has to offer, while also keeping me caged by the physical limitations I have been sentenced with.
Since my brain injury I have been battling back to become a fully functioning human. The unfortunate news is that living with mitochondrial disease the only thing that most doctors can tell us for certain is that my my health will only continue to decline. Mitochondrial disease is a degenerative condition, meaning as time goes by the condition worsens. I already have multiple organ systems that are dysfunctional or failing and we have known for quite a while that it is only a matter of time before we saw other organ system involvement as well.
As I mentioned above medical professionals were unable to determine why my blood sugar has repeatedly dropped so low without explanation. I was sent to a specialist. My last appointment was one week ago. We did a good number of blood panels and unfortunately nothing remarkable appeared that would explain what I am experiencing. We had one of those hard discussions that nobody wants, especially before nine on a Monday morning even more so just a couple weeks before your twenty first birthday. In simple terms since we had no other explanations for what has been causing this she’s fairly certain my endocrine system, specifically the blood sugar regulation portion is now dysfunctional and/or is beginning to fail as a direct result of my mitochondrial disorder. This means that there’s not a permanent course of treatment for any of my low blood sugar episodes like we hoped. Again this is something that cannot be fixed. I can only adapt my current life in order to cope with what I have been given. We hope we can get this to a point where my blood sugar episodes become less complex to manage.
Despite adding yet another organ system to the never ending list of failing body parts I have, I was given a glimmer of hope at this appointment! Since being out of school for summer I have been able to rest my brain, get a decent amount of sleep and not be stressed all the time which has absolutely helped in recovering from the brain injury. We were originally led to believe that the damage to my brain would be permanent however I have made huge strides since being out of school and my doctor is hoping this will not be the case. God willing I should be functional by the time my senior year of college starts at the end of August!
Following my injury I did not leave the hospital fixed, nobody does that’s not how life works, but I did leave the hospital changed. The old me is gone and for better and for worse I am a different person who has adapted to my newest set of circumstances.

No comments:

Post a Comment