Fresh Mud

Living with FSH muscular dystrophy. Questions?
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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 then you can’t begin to imagine what it’s like to have something that affects every single aspect of your life. (And I’m fully aware that disabilities aren’t just physical and of course I include non-physical, too; if you haven’t got it then you can’t know what it’s like.) And I mean it: there is nothing that my disability doesn’t affect. It affects my movement, using my arms and hands, my face and speech, 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 back in 1985 the doctors and specialists knew very little about my particular flavour of muscular dystrophy and, I assume to hedge their bets, they informed my parents that I’d “be in a wheelchair by 16 years old and dead by 20.” (Incidentally, I was never told this but my mother saw fit to tell various friends of mine along with instructions never to let on that she’d done so.) Years later and the specialists had learned more, thanks, in part, to a research program I was voluntarily a part of, and so adjusted their estimates to “we don’t really know.”

The nearest thing I’ve had to an estimate for my expiry date was from my respiratory physiology specialist who stated that if I didn’t start using a non-invasive ventilator then I’d be dead within five years; this was in 2013 and I’ve been using a C-PAP machine ever since.