I graduated from high school in June of 2001. In August 2001 I was diagnosed with Friedreich’s Ataxia, and almost exactly two weeks later I moved into my freshman dorm room on the ninth floor of a residence hall at Temple University in Philidelphia, PA as a social work major. That school year (fall 2001 and spring 2002) I attended two different Universities located in two different states and had two different declared majors.
After receiving such a significant diagnosis, there was no time allowed for processing this information. I know now a lot of tools and information that would have helped me transition to college life as a person with a disability. In the back of my mind, I know that no matter how long my list of resources could have been; I was not open to suggestions and connections. The moment I left the hospital my mind started running a warp speed. I was so focused on making sure I had a future and at the very same time hyper-focused on symptoms that had been manifesting for years, that I forgot to live for the present.
It is always interesting to look back. What should I have done differently? Why did I make the choices I made? In taking my reflection even further, I reread something I wrote about my first few weeks in Philly. It is actually very interesting how a person’s memory changes over time, what you are able to remember and what the mind purposely lets us forget so we are able to carry on. Even the tonality of my writing has changed, just reading it reminds me of the anger, pain, and confusion.
Spring 2011 Me-
Here I was starting a new life in the city I had been dreaming about for the past five years and I felt and looked like I just found out my roommate was the grim reaper. I should have been thrilled to be here since I started packing in April for this end of August journey, but no, the words “ten years,” “wheelchair,” and “cardiac disease” kept play over and over in my head. It no longer mattered to me that I had chosen the most morbid parts of the conversation and that I was now combining them in my head together completely out of context. I was dying. My soul and drive to succeed had died that August afternoon in Boston and now I had convinced myself that inevitably my body was next to go. I was now a ticking time bomb and wow was that ticking deafening.
Even though I had not deteriorated physically from the point I left the hospital to the first few weeks I spent as a college student in Philly, I convinced myself that I was losing control of my body by the hour or at the very least daily. Now having a label and explanation for all my problems. I had my large balloon-like ego popped by those heartless truth-telling doctors who evidently support the thought that knowledge is power. Well, believe me, at eighteen I was more than happy basking in my ignorance.
Every morning that I was actually able to will myself out from under my purple comforter to attend one of my classes I walked from my dorm room on the ninth floor to any one of the buildings where my classes were held, which were located about two or more city blocks away. When I did go I made sure to leave my room a good half- an- hour before my class to avoid the crowds of students that walked too close to me, and who would be staring at me, and knew there was something very wrong with this girl that walks diagonally. The paranoia set in as the real first symptom; I went from a relatively confident girl to an ugly freak. As I walked alone to my classes I would stare down at the bricks that decoratively made up the paths throughout the campus. I was very careful not to look up at the handful of people who passed me as they wandered through the campus for various reasons. I gradually became obsessed with trying to walk straight. Keeping my feet on the certain brick that I intended to put my foot on and counting the number of steps it took me to reach each classroom seemed to calm the anxiety that was growing so strong I was having trouble breathing. It was becoming a daily ritual for me like brushing my teeth two hundred and twenty-one, two hundred and twenty-two. I found I could kill two birds with one stone, concentrate on my walking and avoid making eye contact with anyone that dared to say hello to me. If you do not look-up and are muttering numbers to yourself believe it or not people are much less likely to speak to you.
At the end of the semester, I transfer to another University. I left the city I loved even before my life started. Of course, I wonder all the time if I hung in a little longer what my life would have been like? I now go at least once a year to Philadelphia. My neurologist who specializes in FA, FARA (Friedreich’s Ataxia Research Alliance) and C.H.O.P. (Children’s Hospital of Philidelphia) is a major hub for recent medical studies concentrating on FA, are all there. Say what you will, but is there a reason I was always drawn to this city?
It is curious that when a person, at least me, goes through something devastating and life-altering, there is this need to be surrounded by loved ones and yet at the same time all you want is to be alone. So in a desperate attempt to be closer to people I loved; I followed my high school sweetheart to Roger William’s University, as an education major. First of all “following” anyone anywhere has never worked out well for me. Basically, these two Unversitys were as different as colleges come. I chose to attend a University without my major and chose one in a field I have never really been interested in pursuing.
While there I hid behind others, so to speak. I did well in the classes that interested me and did not even bother with the ones that did not. My mind was always busy trying to figure out what my next step should be in order to fit all my life plans in the next 9 years 4 months and counting. The count down was a driving force behind my rash decisions and unorthodox behavior.
Now almost a decade after my reflection and twenty years after living this, I obviously have those same feelings of anger, pain, and confusion. I am just now learning to accept and live with the choices I made. Regret is not the right term, but different might have been.
What would my present self say to my past self? I really don’t think it would have mattered what I would have said. My old self was young and thick-headed. I would have tried to explain how much life I had in front of me and what I would be capable of accomplishing. I would tell my 18-year-old self just breathe, every choice you make has a ripple effect and even though the picture of the future has changed, it is still a picture worth hanging.
Finally. I am able to express those feelings in more productive ways. I am learning that life is really hard, but I am not alone. We are all trying to do the best we can, and we need to support each other. Hindsight is really 20/20. I can beat myself up for the choices I made while I was in pain, but I can not change the past. If I fail at everything else, at least I have shared my story and gave even just one other person a way to learn from my experiences.