Try as I might to be optimistic, I can’t deny that living with Muscular Dystrophy is bloody hard. The weakness, the random pains, my knees giving out without warning, I’ve just about learned to live with that. In my mind is where he real battle is fought.
I often 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 tightness in my chest, a burning sensation in my thighs and a concrete sensation in my face.
I often get the urge to do the things I can’t, because my body remembers a time when I could.
Becker’s is a strange and cruel disease in that it chips away at you like a malicious sculptor, not knowing when to stop, continuing it’s work until you’re reduced to rubble.
It starts off subtly enough. You walk as a child, typically later than others and you’ve got that noticeable gait but it’s no big deal. Yeah, you’re a little slower at running than your friends but other than the odd bout of tiredness, you can keep up.
The world spins a few more times, then you find yourself uncertain on your feet and needing the support of a walking stick. Then, you need a wheelchair more and more until the ability to walk leaves you entirely.
Living with this is hard enough, but having a child brings new challenges. My daughter is eight, geeky as her old man and possibly the most amazing child out there. I’m not biased, I’m just right!
These days, I find it increasingly difficult to keep up with her. There are nights where my heart breaks as I can’t go upstairs to tuck her in because I know I won’t get back down. Dads who can walk can do it…
There are days when she wants to ride her bike and I can’t walk alongside her. If only my legs were stronger…
I honestly feel there’s a line between who I am and who I want to be, and Muscular Dystrophy has drawn it.
I get so inside my own head at times that I feel the Dementor’s grip of depression creeping in. I worry about what I can’t do, rather than focus on what I can.
Yet, there’s things I can do that other parents don’t.
On the bad days we can play video games, 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. It was grey, miserable and I had a genuine fear of being stabbed on my way to the bus stop. I went to a high school that I hated due to years of bullying for daring to have a disability – how dare I?
I found a job and a girlfriend, who I would later marry. We worked hard to earn enough money to move out of Glasgow to a town called Paisley, where we had our daughter and then further out again 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 her.
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.
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You and Tracy are a wonderful together love is what binds you and will see you through whatever life throws at you. Winter our wee miracle is a credit to you both. Just be the person you are, be honest to yourself and be proud of all you have achieved. There are people who love you for you and see past your disability and there for you always.
If you learn to appreciate the small things in life, you will undeniably be happier. Time with loved ones becomes precious and you will be grateful for giving love more than receiving.