My name’s Dean, and I have fibromyalgia, ankylosing spondylitis, a sliding hiatus hernia, my right wrist feels broken and oh, I’m pretty resistant to pain meds. Yes I would like to sit down, and no I’m not yawning because you’re boring. Nice to meet you.
That’s how it feels when I have to introduce myself, amongst the stares of pity, and the occasional “what have you done to yourself” line of questioning – when you really can’t be bothered to go through it all with a stranger, so I tend to stay at home quite a lot. This in part is also because my legs don’t work well enough to go out on a jolly, and falling head first into a rose bush thanks to my knees giving out is a hoot for onlookers, but a nightmare to get thorns out of the beard. Mainly I really hate the questions, the intrusions, and the explanations – and I feel bad for that. Some people really do care, but please don’t make me go through it again.
I do have a couple of rather snazzy three wheeled trike mobility scooter affairs, and do use them when I have to leave the sanctity of my cave. Yet, the questions still arise with a side helping of someone much older than I, opening – and holding – a door for me to shuffle through stick in hand at the post office when, it “should” clearly be the other way around. It’s just embarrassing – although not head in a petunia bush embarrassing, it still doesn’t make me feel great.
My choice is to not go out in the big wide world unnecessarily, and instead spend quality time with my wonderful and supportive wife, and brilliant old, arthritic, and dribbley spaniel.
A good plan until my good lady has to go to work, and the old spaniel isn’t fussed about chasing a ball around the garden or having snuggle time, preferring to lick her paws and fall asleep in the sun. This is the time I find it hard.
When my illness first began to really take hold I fought it for as long as I could, but the chronic pain and fatigue eventually got the better of me. It made me give up my day job and it was then I realized there was a choice to make, a path to decide upon where one road is easy but could lead to a lot of dark clouds, or a more challenging path that would be mainly rainy, but have intermittent sunshine. I chose the latter. I chose intermittent sun.
I had previously wracked my brain for what I could do that didn’t need much movement, that I could do sitting down, and wouldn’t make a difference if I randomly nodded off or couldn’t quite manage it on any given day after work.
I ended up creating a YouTube channel for something I was passionate about.
It was a hobby, and something I could focus on rather than sitting in front of the TV in a grumpy mood, comfort eating.
When my “normal” life with it’s 8 a.m. – 6 p.m. day job came to an end, I can honestly say my YouTube channel (as well as wife and spaniel) was a haven for me. A creative workspace where I could set myself challenges – learning a new piece of software, starting and/or finishing a piece of content, or even prepping for a video for the future all gave me a goal. That was what spurred me on to get out of my bed 19 out of 20 days – even if it did mean rolling onto my front, getting my legs on the floor and pushing off the bed using my face because my ankle, knees, and wrists had decided to “play up” that day.
Amongst the embarrassed feelings of being in public with the shuffling, wincing, and occasional whimper (I didn’t know my body could make my mouth make that noise by itself – at least without checking with me first), I could create something where most people wouldn’t know I had an issue, and could be “normal,” for want of a much better word. I hate being disabled with a chronic illness (nobody has it for a giggle after all), but this format gave me a chance not to feel like the odd one out, or be forgotten about in social gatherings, or have to explain why I have my face in a conifer and a couple of buckled legs.
As time passed I spent more and more of my energy into building something I was proud of, not “good for someone with a disability” but great (in my opinion) in the wider context, where I could stand amongst my more able-bodied peers and be proud of my accomplishment. This feeling of achievement in it’s own right, not against adversity, not inclusive of my illness, but an success in it’s own right felt – and still feels – amazing.
Now, a year and a half on, I’ve taught myself a plethora of new skills in photography and cinematography, presentation, lighting, editing and more, and I’m still learning and it feels great. Not to mention, when you have those nights of insomnia, there’s always a YouTube video or website begging to teach you something new, so it passes the time away quite wonderfully. I’m also yet to fall over head first into Mrs. Jenkins Chrysanthemums down the road, so the virtual world definitely has it’s advantages.
What I didn’t expect through this journey was to have essentially a blind support network, random strangers enjoying the content I put online, egging me on and letting me know I did a good job. Often unaware of the fight I’d had to get into my studio, the extra cushions in my chair to support my back, or the fact that I’d recorded the same thing seemingly 894 times just to get my words out in the right order thanks to a foggy brain. This unknowing band of subscribers were instrumental in getting me out of my hermit’s nest, and to conventions and gatherings. They didn’t press me into it, how could they? They didn’t know. But, rather than just the desire to work out how to create a smooth transition from my face to a product shot, or how to edit my sound in post production to hide that I completely forgot to turn on my mic and ended up with terrible sound from the camera mic, I had the urge, the desire, and the will to get my broken self to conventions to meet these fine bunch of individuals that had unknowingly inspired me to “pull myself together” and get out into the world.
Am I famous? No – in fact “hell no.” I’m not sure what comes way after “Z-list,” but I imagine if you pulled out the dictionary there would be a picture of me there. It’s never been about that. It’s been about creating something, focusing my energy on to something positive and not how horrific I feel. It’s about realizing that while my previous life may not be an option, I can adapt and create a new one by still learning something new, setting goals, and feeling damn good about myself when I’ve achieved it. The fact that I have some wonderful people that enjoy what I do is amazing, and at these events, I’m lucky enough to shake some of their hands and tell them I appreciate them. That to me is golden. They’ll never know what it means to me, but it is the cherry on the cake. The acceptance that while I may be a different Dean from my previous self, I’m not on the scrap-heap. I’m still productive, and can still contribute something positive. It’s even given me the confidence to publicly talk about some of my challenges and share my thoughts in the hope that it may help someone in the same boat I used to be in.
This chronic illness is a bitch, there’s no getting around that. Dealing with horrific pain, body parts not working, and often all without warning, all adds up to a pretty difficult way of living. But, if you can find something you enjoy, something that pushes you to keep learning, keep achieving, then I guarantee you’ll be in a much better place than sitting on the sofa at 3 p.m. in the afternoon under duvet watching Judge Judy.
There will always be days when you need someone to open the milk or lift the kettle, the days when you’ll get a face full of shrubbery or have a door held open for you, but they are a hell of a lot more manageable when you know that you aren’t just that helpless wobbly individual, affected by chronic illness. You’re still a creative, passionate person who’s in control of their future still and refusing to give in.
You know what, when on occasions you do have that duvet day with a packet of chocolate hobnobs and the black and white films on TV, it’s a treat – not a lifestyle choice. Don’t give in to it, find your passion, interest, hobby, and run with it (figuratively of course) and get out there to make yourself heard.
Illness and disabilities are way easier to deal with once you accept it doesn’t define who you are.
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Thinkstock Image By: kirill4mula