For a long time, I thought my life was awesome despite my disability. Later I realised that actually, my life is the way it is because of my disability. I couldn’t have done the same without it.
My life would have been very different were I perfectly healthy. And I like to believe that in direct comparison, I was served the better option. That’s of course largely based on my cliché opinion on how my “normal” life would have looked like. And I admit, I might purposefully paint it a little boring in my mind.
But instead of going into that any further, let me give you 7 reasons why I love my disability:
- Bye bye, comfort zone
- Challenges, served fresh daily
- I learned to focus on my strengths, not weaknesses
- It reminds me to keep a positive attitude
- It makes me approachable
- I’m memorable
- It’s a constant reminder that time is running out
It’s pushing me outside my comfort zone all the freaking time. Literally, all the time. I don’t even know anymore how my comfort zone looks like from the inside! It’s so small, it probably got eaten by the cat. Coming across a problem and thinking “I have
no idea how I can solve this” is almost a daily occurrence. And then there’s also always the thought that “This and that could happen, and then I’ll really be in trouble”. I see that this is something many people might find themselves thinking. But with a disability, the scale is vastly different. The most mundane things can be a problem: Stairs in front of a doctors office. No available parking spot near the cinema. A step without a handhold in the restaurant.
Something always goes wrong.
So instead, I got used to being outside my comfort zone, and just deal with problems as they come along. That way, I gradually lost my fears and worries. And it has become quite peaceful out there.
Even the smallest actions can seem almost impossible with a disability. Something as small and mundane as shopping for groceries, or getting out of the car when the street is slippery, can become big challenges that need to be solved somehow. I learned early to think outside the box to solve even the most curious everyday problems.
That means that something “big” like leaving the country is exactly the same kind of challenge: a problem that can be solved somehow. Just like buying groceries or getting out of the car. No difference. Except, that often times “big” problems are even easier to solve.
In our society, the opposite is usually true. It’s something we learn when we go to school: if you’re average all the way, that’s kind of ok. But if you’re brilliant in one class and a complete dummy in another, what do you think everyone will tell you to do?… Yes: “You need to work on your weakness.” That’s common thinking, but it doesn’t make sense.
For me that never applied. My strengths and weaknesses were laid out, and there was nothing I could do about my weaknesses. So I understood the flaw in that concept early on – I was forced to, anyway. And I concentrated my efforts on what I was good at, in order to get even better.
This one is going to sound narcissistic at first: It makes me the center of attention. Everyone is looking at me. You don’t often see a young guy in a wheelchair, or walking with a crutch, or clumsily trying to get up from a chair. I used to hate this. I thought everyone was judging me by my imperfection. Now I think differently – I realise that everyone is just curious. I mean, I do stand out, I can’t deny it. And these days, I’m making the best out of it. Like a friend put it: I’m just like one of those huge advertisements covering an entire building. Everyone who walks by looks at it. But here’s the thing: I get to chose what’s on that ad! Is it going to be a grumpy man yelling “What are you looking at!”, or is it going to be an open smile and a wave and a “Hello, how are you guys doing!”? Since they are looking anyway, I can just as well show them something positive to look at.
With time, this became a feedback loop – every time someone stares at me, I think positive, and I smile and wave. Since staring happens a lot, I often think positive, and I smile and wave a lot. There are worse things than that.
One part of that is the initial curiosity, another my smile and wave answer to it. A third however, is the fact that I obviously pose no threat. Well, in a social and physical sense, I mean. It’s still only a theory of mine, but I think I’m on to something here. Imagine you get into an elevator with a 120kg martial arts fighter. You’ll probably not say anything and concentrate on your feet. If the men among you get into an elevator with a stunningly beautiful woman, you’ll probably go completely mute (until you leave the elevator, yell “damn” and hit your head against the wall). But get in an elevator with me, and in nine out of ten cases the first thing you say is “Hey, so what’s with the crutch?” Kids approach me and inquire about the buttons on my wheelchair. Parents say hello and strike up a conversation. You don’t get that kind of openness when you’re a martial arts fighter or a beauty queen.
(In order to scientifically test that theory, my plan is become both a martial arts fighter and a beauty queen – I haven’t figured out the order yet – and to see how that changes things.)
My disability makes me memorable. It’s close to impossible for me to go back into a store, restaurant, hotel, etc. and not be recognised again. I once went into a sushi restaurant years after I had been there only once. I was greeted with “Oh, you back, hello!” I think that if I went back into any venue ten years later, wearing a Groucho Marks mask and a pink wig, people there would still say “Hey man, you are back! How have you been?”
Now, why is this a good thing? Because I tend to leave a good impression when I go somewhere. When I come back, my good impression precedes me. I’m not “Hello Mr. New Customer”, I’m “Hello again Mr. Pleasant Person.” That being said, if you have a disability and you’re a jackass, then this point is probably not working in your favour.
I’ll close with a point that sounds very dark: Time is running out.
Now, I am very lucky in that my particular muscular disease is not going to stop me from growing into an old age. But it keeps progressing, and how much I’ll still be able to move around in a few years, how much I’ll still be able to do on my own, that remains to be seen. And I find this a great gift. I really do. Because I see no point in saying that I’ll wait with something and do it later. The old question “Do I do this now? Or do I do it later?” never comes up for me. Because I don’t know if I’ll still be able to do it in a few years. When I find a new adventure that I want to do, I don’t ask myself when I’ll do it. I ask myself how soon I can do it. I always follow my heart. There was a time when I was able to ride a bicycle, or drive a scooter, and do many more things. I can’t do them anymore, I’m no longer strong enough. And that’s totally ok. What’s not ok is to not do something I would like, and to tell myself that I can always do it later. When I have a huge pile of work in front of me, and looming deadlines coming my way, and I look out of the window and it’s a beautiful sunny day – I go out for a walk. Screw the work, there’ll always be work. But who knows how long I’ll still be able to go for walks. You might have spotted the irony here: This is true for every living being. Who knows how much time each of us still have left to do what we enjoy?
And this is what I love most about my disability: every day, every hour, it reminds me of this.
It’s hard to say what would have happened if I were born without a disability. I am sure I would have never learnt many of those lessons – or at least, not so soon. My best guess is that I would have a job that meant little to me beside the pay check. I’d put that into paying off mortgages and retirement plans, so that I could retire in 30 years and maybe travel a bit.
I think of this this Michael who is in an alternative Universe, a I look at the hills of Hua Hin that stretch out in front of me, the roof of a temple showing through the trees. And I raise my Singha beer to toast my life and silently say thanks to my disability for being here.