Today an older gentleman in a wheelchair asked me “what did you do to yourself?”. This is not a question I enjoy answering because the answer is pretty unclear, but in this situation, I assumed the question was one of a social matter. I mentioned the minor injuries to my lower legs a couple years ago and how it progressed over 5 months to no coordination with walking. The older gentleman responded with “Now that bothers me, because I was pretty messed up after my accident.” This basically halted the conversation flow and he rolled away.
I get a variety of reactions and responses when I tell my story about becoming a wheelchair user. I think it is human nature to respond with curiosity, shock, or concern; but having an unclear diagnosis adds skepticism to that list. When I hear the skepticism in people’s comments, it hurts because it devalues the hardships I face. Making it seem like I chose this when all I want is for my body to work.
I remind myself again that the comments are just noise…. if they don’t help my situation and cause me harm then they are not worth listening to. The noise is present every day, I hear it in my inner monologue, between the written lines of physician notes, and in the words of passer by strangers. Some days I am in a noisy room and other days it’s just 1 person taking up the air but either way I tell myself “It’s just noise.” And for a few moments I am at peace.
It’s not my fault that this happened. I did not ask my body to fall apart, let alone without leaving a breadcrumb trail as to why. Yet, I am constantly blamed by the medical system for this happening. I am made to feel like I am using resources that could be better distributed if I would just “let it go”. But how can a doctor look me in the eyes and tell me “You need to let this go.” Am I supposed to just accept that one day my body will work again? Am I supposed to trust the doctors who can’t offer me the time of day? I know I am a burden on their system and that there is the problem.