Christina Crosby was an athlete turned quadriplegic and the author of the book “A Body, Undone”, among others. A quote from her writings, featured in her recent obituary, summed up some realizations that I have come to.
“The typical disability narrative carries the troubled subject through painful trials to livable accommodations and lessons learned, and all too often sounds the note triumphant,” … “Don’t believe it.”
Problems encountered by my former self consisted of whether I could fit a little more work in here, keep a job on track there… save a little money here, fit an activity in there. Disability problems imagined by my former self might have tended to focus on such things as not being able to walk, drive a car, etc. Some very simple things are so taken for granted that they are missed when imagining loss. They tend to eclipse the problems that I would have imagined long ago. The fear of making an awful, smelly mess that will take a significant part of the day for someone that I love to clean up, due to loss of control of bodily functions, does a pretty effective job of distracting from, and trivializing, the daily activities that I used to spend my time thinking about. We do find solutions and workarounds, but one does have to keep lowering the bar of acceptability.
Perhaps the biggest problem, It turns out, is the lack of purpose. To a significant degree, we are our hopes and dreams, what we work towards, look forward to, or to put more broadly, the future for ourselves.
I suppose that working on this project of getting life done with a progressive disability is a purpose in itself, but it rings a little hollow to me when it is for myself. I have found that it delights me to have my little projects fit into the community around me in some way. I did not previously appreciate the extent of this.
Luckily, I do not spend a majority of time contemplating these things and complaining about them feels ungrateful. I very much am grateful.