“Can you tell me when your symptoms started?”
A simple enough question – you would think – for a doctor to ask a patient. But it causes me to pause and flip through my memories like I flip through the pages of my grandmother’s almost hundred-year-old cookbook.
Do they want to know about the time when my legs started wobbling so uncontrollably they I could no longer stand safely? When I would try to run but could only get 100 m before I would collapse in exhaustion? Or when my hands and mouth and legs started vibrating quietly to themselves at the end of a particularly long day?
Are they interested in when my eyes started preferring to be unfocused over focused? When I started collapsing randomly from the knee or ankle for no apparent reason and needed to start wearing AFO’s (leg braces)?
Maybe they’re talking about how I’ve always – ALWAYS needed 9 – 10 hours of sleep?
Or maybe it goes back further than that. Maybe they want to know about having to sit on the sidelines during gym class, only learning to ride a bike when I was nine (after years of effort) and then only being able to get around the block once or twice?
The simple truth of the matter is that not only can I not tell you what I have, but I can’t really tell you when it started, because I can’t remember life without it.
It has simply always been.