For my own peace of mind and clarity I have been attempting to piece together how I have dealt with my disability over the last thirty-five years. My disability is a chronic, degenerative, neurological disease similar to Parkinson’s or M.S., but, as I mentioned in my last entry: I have gotten better, did not die and have not gotten worse. So, my question is what have I done differently.
I did not “fight” my disability or struggle against it in any way. Actually my disability taught me that since fighting spastic muscles just makes them worse I’m better off accepting them and what they can tell me. In fact, my disability has taught me many things since I listen to it without considering it an enemy. It has helped me with things like patience, acceptance and tolerance in addition to teaching me to listen better. I am the person I am today in part, because of my disability. My relation with it is complex and multifaceted. I have “joined” with my disability, treating it in some ways as an unwelcome partner in my life. It has definitely made my life more difficult in many ways. However I am very grateful for the person I have become. I respect it, accept it but do not like it. I also honor it as a sacred gift from God just like just like rocks, trees, sunsets, rain and oceans.
In joining with my disability I also negotiate with it. On one hand I will do all I can to make it go away while also appreciating its gifts and respecting it. My disability is integral to who I am and what I do. I also know that, given a chance, it will kill me which I am not ready for yet since I am not done. There is no feeling of malice or anger on either side, it is as it is.
Looking back, I would not change a thing since that would make me different, but I wish that was not so.
