i’m still here
November 22, 2016
it is like a balancing act (walking on a tightrope as it were) between acceptance and “raging against the dying of the light” – I think the latter is too negative and implies merely fighting (which is not always the most appropriate metaphor). I do not claim to get the mix always right but at least I’m more conscious of it. I try hard and exert enormous effort despite not always succeeding: it is partly a function of my inherent stubbornness and my will to be better.
The reality is people with ataxia mostly do not improve: the point of physical therapy is to stave off or delay degradation. Aside from my daily exercises, I will endeavor to do the home program that my neurophysio gave me more regularly because it is supposed to be highly beneficial for my condition. My appointment with my neurologist and the report from my physio prompted me to reflect (not to mention the PT students going on holiday).
Not having a “name” for my condition is a double-edged sword: not knowing does not “box” me in a fixed category on one hand; on the other, I struggled at first because I wanted to learn as much as I could so that I could take appropriate actions to delay (or better yet eliminate) it. Not to be too fatalistic but all people are dying since their birth: some are just more accelerated than the “average”.