I’ve been disabled for over seven years now. It’s been hard but it’s been amazing. Sometimes I feel like it’s all too much to handle, sometimes I feel like I might be the luckiest guy on the planet. Today I don’t feel so lucky.
I know I have it quite good considering, I know things could be so much worse. But I also know I’d rather not be disabled in the first place. And it’s not simply because I want to be physically able again (even though I do). It’s that my disability dictates my life. I always say to people, and to myself, “Your disability doesn’t define you”, but I genuinely can’t say it doesn’t. Everything in my life is dependent on, or heavily influenced by my disability. My career, my social life, my home, my diet… even my sleeping patterns: all would be drastically different if I wasn’t disabled. I can’t pop to the shop without mapping out a route with ramps and level access. I can’t go on holiday without accommodating for my carers, medication, equipment, emergency healthcare, accessible accommodation etc. I have a deep love for drawing, dancing, basketball and video games. I haven’t been able to enjoy those passions since 2010. Correction, I danced with a pretty girl at a wedding a couple weeks ago… and I definitely enjoyed it. It still wasn’t the same though.
I don’t like not being able to choose. It’s one of the core reasons I don’t like getting drunk. It’s the reason I’d rather direct my own care than simplify things by using a care agency, it’s the reason I love my wheelchair. But it’s also the reason it sucks that I will get ill if I don’t drink copious amounts of fluid each day, it sucks that I need care in the first place, it sucks I need a wheelchair at all.
But today is just one of those days when I don’t feel so lucky. Because it looks like crap doesn’t mean it is. Kind of like a shish kebab. Today is just one of those days. Tomorrow I’ll remember that my disability indeed does not define who I am. Tomorrow I’ll remember I’ve been to Uni and graduated twice since my disability. I’ll remember I’ve carved out a career and a life worth being proud of even against overwhelming odds. I’ll remember I write a blog with no hands and people apparently read it (or they at least say they do). I’ll remember I have the most amazing family on the planet. Tomorrow I’ll remember I live my life not because of but despite my disability.