Fresh Mud

A blog about living with FSH muscular dystrophy. Read more →

Entry 11 of 34

It Affects Everything

When I was first diagnosed with muscular dystrophy, 35 years ago when I was 12 years old, it meant very little to me; the news affected those around me more so, my mother especially, but to me it was just words. It explained a few things that had always been there, such as my skinny upper arms, my eyes not closing when I slept, and my speech impediment, but there was very little in the way of information; that is to say the doctors couldn't tell me much about it and, seeing as I was young, I was excluded from most discussions anyway. As the years have passed and my body has deteriorated, I can now fully understand what it means to have muscular dystrophy, and this is a contributing factor to my depression, but I'll talk about this in a later post (yay!).

I occasionally get people saying things like, “I can't imagine what it's like to be disabled,” and it's true: unless you are disabled, physically or otherwise, then you cannot begin to imagine what it's like to have something that affects every single aspect of your life. And I mean it: there is nothing that my disability doesn't affect. It affects my movement, using my arms and hands, my face, my eyes and eyesight, my speech, eating and drinking, my sleep, and even the way I think; my thoughts when going anywhere include accessibility, needing the toilet, having assistance with eating, drinking, and everything else.

The most important thing it affects is my lifespan. When I was diagnosed, the doctors and specialists knew very little about my particular flavour of muscular dystrophy and, I assume to hedge their bets, informed my parents that I'd “be in a wheelchair by 16 years old and dead by 21.” Years later and the specialists had learned more, thanks in part to a research program I was a part of, and so adjusted their estimates to “we don't really know.”