I try to be optimistic but there’s no denying it, living with Becker’s Muscular Dystrophy is hard. I can live with the aches and pains, that’s easy, but mental health is where my challenges lie.
I sometimes get this crazy notion to run, to run as fast and as hard for as long as I can but I know I can’t. I could make a damn good effort but I'd get hundred metres before my knee gives out and leaves me with a burning sensation in my thighs and a concrete sensation in my face. I want to do things I can’t because there was a time when I could.
BMD is unique in that it chips away at you gradually. You start off walking, generally a little later than other children and with a noticeable gait. You’re a little slower but other than the odd cramp or bout of tiredness, you can keep up. Life moves on and you require a walking stick, the occasional support of a chair before the ability to walk leaves you.
I’m a father to a seven year old that I struggle to keep up with. There are nights where I can’t go upstairs to tuck her in because I know I won’t get back down. There are days when she wants to ride her bike and I can’t walk alongside her. There’s a line between who I am and who I want to be, and BMD has drawn it.
I get so inside my own head at times that I feel the Dementor’s grip of depression seeping in. I worry about what I can’t do, rather than focus on what I can. Yet, there’s things I do that other parents don’t. On the bad days we can play a video game, write a story, draw, paint and just enjoy being creative. We live in the country so there’s a short trip to fields, farms and a local loch. At times it feels like middle earth is round the corner and that’s where I find comfort.
I can say with all honesty that I didn’t like the part of Glasgow I was raised in. I had a genuine fear of being attacked on my way to the bus stop and I was bullied at high school until I ended it with a well timed punch. I didn’t enjoy it.
I worked hard to earn enough money to move out of Glasgow to a town called Paisley and then further out to a rural town called Johnstone. Whenever I feel that my daughter is losing out due to her daddy’s disability, I just need to look out of the window and see what I’ve given here.
I won’t tell you how to live your life or insist you follow my example but putting myself into a more positive environment has provided me with a more positive outlook on life. There are days when my feelings conquer me and days where I win but most importantly, there are days. That’s more than some of us get and we should be grateful for them even if they come with challenges.
Dystrophy Dad is a writer and blogger from Scotland who shares his experiences of fatherhood with BMD to destigmatize disability. He is chair of disability network and lives with his wife, daughter and three-legged pup Luna.
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