I'm not bound to my wheelchair, my wheelchair is bound to me… like a dragon.
I saw someone on Reddit recently, young both to the world and the disease, saying I think understandably that his greatest worry was being ‘bound to a wheelchair’.
I use a wheelchair and it does sadden me to think that a key part of my life is this young guy's greatest fear. But I don't blame him, it was my fear too when I was diagnosed.
I did not understand.
I thought of the wheelchair as akin to a cast or a bandage, like something we apply to a medical vulnerability to protect it. A cast is almost as much a social message as it is a medical aid, it protects the injury from further harm and it signals to other people that there is a wound here, that we should be mindful not to risk further harm, that the person injured might need help while they get ‘better’.
In that light a wheelchair is just a bigger medical device, a louder message, and in that way I reacted to people using wheelchairs as if they protected a more profound injury or vulnerability. I’d express sympathy, quietly hope they will get ‘better’ soon, feel sorry for their situation.
I’d hold things for them, move obstacles out of the way, make sure that nothing would be challenging for them, all because they were vulnerable, injured.
So when I was in the position of getting my own wheelchair I avoided it for as long as I could. I fell on a moving train because I could no longer balance, I fell into and onto people, I struggled on my feet switching from cane to crutches barely able to lift my legs and wasting precious spoons. I held such a deep sense that the wheelchair would signal something to me and to the world that I would injure myself long before I would consider taking that monumental step.
When I finally relented and tried a wheelchair it didn’t help at all. I was too weak to push it more than a few feet and my struggle drew the attention of passers by, their stares, their concerned offers of help. I started to see myself in my struggle as vulnerable, pitiable. I’d wipe away tears with the sleeve of my jumper as I’d give one more strained push, one more foot of progress.
Each day I’d push a little more, not only on the road, but in my mind. I’d push against the fear and the self-pity and the stares and the falls and the shaking arms and the blistered hands and the spasming legs. I’d put my headphones on, get the right music playing, and push once more…
Recently, I bought myself my second wheelchair, this one is built with my shape and size in mind, my legs underneath me, the wheels beneath my arms’ natural position and slightly tilted inward for greater stability, the weight lighter and easier to push. With how strong I’ve become I can push this chair anywhere. We go outside and I find some open space; I wheel hard, using my whole core, and the chair responds, coasting at speed, nimbling past obstacles, skidding around corners. I realise pretty suddenly that my wheelchair is far from an indication of difficulty, far less like a crutch…
…and far more like a steed.
People who visit stables, thinking about taking up riding, don’t look at the horses with undue caution about what it means that they’re now the kind of person who rides horses, they’re not worried about what people will think when they’re on the back of one, and they don’t worry about being ‘bound to my horse’.
Riders aren’t bound to their mounts, their mounts are bound to them.
I’ve fallen using my chair twice now, but even the language of falls is strange to me. We don’t fall off of bed, we fall out of it. We don’t fall out of a motorcycle or a horse, we fall off them. So to my mind we shouldn’t fall out of wheelchairs, and now I’ve fallen twice off of my wheelchair. The first time I fell off my wheelchair I was popping wheelies on the pavement and I fell over backwards; for sure, I fell off it, not out of it.
When I went to the dealership (yes wheelchairs are sold at dealerships, I know right?), the way that people received me wasn’t with any sorrow, or pity, or concern about this step. This wasn’t a medical establishment at all, and the people selling the chairs were not doctors and nurses, but much more akin to stable masters. The dealers wanted me to feel what it was like in the saddle, see how it held me, and watch how the chair responded to my movements.
In that light my wheelchair isn’t a bandage. It shouldn’t be a social signal, it doesn’t indicate injury, it isn’t temporary, and well wishes don’t apply, there is no getting ‘better’, and we don’t feel sorry for riders.
I’ve come to realise that my wheelchair is not a medical device at all; no doctor prescribed it (an NHS wheelchair is not what I’m looking for), no physiotherapist sits me in it correctly, no-one tells me whether or not it is a good idea to use one. I decide when it is time and indeed when it is time it is far less like choosing a medical device than choosing a horse, or a motorcycle, or a dragon.
To the young guy who considered the wheelchair to be his greatest fear: it was mine, too, but we don’t need to fear a wheelchair any more than we would fear our horse, or our motorbike, or our dragon. When we sit in the saddle for sure we’ll fall, we’ll find barriers we struggle to overcome, we’ll draw the attention of onlookers, and it will take time and effort to learn to ride, but when we do give us an open road…