I have come to the conclusion the hardest and most encompassing problem sprung upon me since my recent brain injury and epilepsy diagnosis is my independence or lack thereof. In turn, this has also led to the loss of my identity. Only now as I find myself struggling to endure this pain for a second time I have come to realize I can try to tell myself I have been here before because in part that is true, but the truth is enduring this pain for a second time will always be harder than the first time ever was.
The first time I endured this kind of heartache, I was fifteen. It was not easy having to start over again in the midst of high school. I had all these adults in my life asking me questions about what I wanted to do in the future. These seemingly innocent questions are standard for most people of that age group. Prior to the time when I was sick, I could easily answer their questions. I had a plan. It was a plan that was made when I could still play the sport I loved since I could walk, when I could get out of bed in the morning without any pain, and when I did not struggle to make it through school. However, following my health decline, I often wondered if the adults asking me these questions thought about the implications of my diagnosis? Did any of them realize I had recently been told it was uncertain if I would even have a future? It was at the time of my diagnosis my answers to their questions were forced to change, and by doing so, it altered the person I thought I was becoming into the person people have come to meet, know, and read about today. This felt like I was being taught how to swim by being thrown into the deep end of the pool without a life jacket. Yes, I did eventually learn how to swim, not because I wanted to but because I had to. I was not going to let myself drown. My life needed to continue so I adapted, I kicked my feet so hard, and I fought like hell to create a different kind of life because although different than the life I had before, I could see it was still a life worth living.
But back then it was easier. I had a backup plan. I had other activities and other hobbies I enjoyed ones I could still partake in. I could still read all the books I wanted, I could focus in those AP classes I was taking, and I realized I enjoyed hanging out with my friends at church so much that I wanted to make more time to do so. I found new hobbies too… I fell in love with photography, advocacy, and writing. If I no longer had my athletic abilities, then at least I had my intelligence. I soon understood my life could be successful, interesting, and fulfilling even if that life was not the life I planned. When my original life plan faded and my back up plan became my present life plan, I made the conscious decision to focus on my life now. I did this in an effort to cope with the understanding that the plans I wanted to exist were never meant to be mine in the first place. I was expected to accept what was and make a good life out of that no matter how awful my situation felt. I am not going to paint you a pretty picture and tell you everything finally fell into place because it didn’t. This only happened after I fell apart for a little while, and trust me— it was far from pretty. Fast forward to the now I am grieving the person I once was for a second time. In the present moment, I have lost my ability to drive, the freedom to travel, my memory, my ability to concentrate on schoolwork, it is becoming harder to function physically, to comprehend and enjoy the books I read, and my ability to spend time alone. The awful thing is most of the time, it seems my brain is barely able to comprehend the little things. Today, what abilities I have lost is much more and this hurts. With all the abilities that have been stripped from me over the last nine months, I no longer feel whole. I feel so different I am not sure there is even a me that exists anymore. I know not all of these feelings are permanent— My emotions are still raw and real as this is only the beginning of my experience as a person living with a brain injury. My process of healing is barely in motion but I already know I will live a life beyond this despite all the voices in my head trying to tell me otherwise. I learned to live with my circumstances the first time, I know I can learn how to live with another set of circumstances again, but first I have to work my way through grieving the loss of all that was forcibly taken from me.
In another attempt to cope with what I was facing, I couldn’t bear to think about needing another backup plan, so I let slip to the back of my mind. I was saving the issue for later because my wishful thinking hoped I would never need another plan. On the outside looking in, some people might call that naive to look the other way given my diagnosis, but it is easy to say those things when they aren’t the ones in the water trying not to drown. This battle is so heavy I am already barely keeping my head above water. I can’t imagine how much harder this life would be if I let the thoughts of what I could lose next weigh me down. Despite this, what most people do not realize is I have spent the majority of my time looking at life from a realist’s perspective. My life has been calculated by numbers, treatment plans have been made after using cost-benefit analyses, and we have used some of the most strategic and intentional planning to increase the quality of my health. I am far from ignorant regarding the likelihood of my declining health. In an effort to protect the spaces in my life where the numbers, treatment plans, and analysis processes do not reach such as my emotional well-being I have chosen to live beyond these constructs. I am more than the binders of medical records I have collected over the years.
