I did this thing on Tuesday. My doctor taught a class and used my mind as the beautiful model. Ah, um, or he was giving a lecture on diagnosing neuromuscular disorders and had four patients, including me, give case histories as examples of diversity.
Most of the questions I was asked were easy. “Are there sensory symptoms?” or “Are both sides equally impacted?” (No and no). But one screwed me up.
“How is your life affected by the disability?”
My answer was,”As little as I can get away with. I try not to be limited unless I have to be. For instance, I still live independently and work a full work week.”
But that answer is lame. Here is what I wished I had said.
In all ways and in no way important.
The disability factors into everything you do from the physical, to the mental, to the social. But, dwelling on what is hard or impossible is a waste of time. You deal with what you can, ask for help for what you can’t and work on the courage to push against your boundaries.
But I can still laugh, love and learn. I can be clever. I can make relationships and strengthen them. Conversely, I can cry, be cruel and be stupid. I can pray and blaspheme. If it is important I can still do it.
Everyone has limitations. Many are more debilitating than my own. But to live defined by the limitations doesn’t work. Everyone has gifts too. The trick is to try and let those define you.
🙂 or something like that. Of course that still doesn’t really answer the question she was asking… Which I think was really “what can you not do or find very hard?” But it was the answer I wish I gave.