Faking it
When I’m in my wheelchair, known as The Rocinante, she and I are like a foot in a familiar shoe. I’m comfortable, held fast, and moving comes as naturally as breathing.
But when I need to, I can walk.
When I’m well rested, when the air is cool, when I’m calm, I can stand and walk pretty confidently. Periodically I walk up and down the road outside my little flat and I can measure the distance I can cover. I can reach about a kilometre before I can no longer walk.
As we inch toward 1000 metres the deterioration is quite a steady decline. I walk up and down the little flat road, and for the first few laps back and forth my walking is solid, stable, safe, and powerful. I feel in those moments like I could run, like I could hike up a mountainside. But at the end of each hundred metres my legs sneak a shot of whiskey while I’m not looking. After a few shots things turn… problematic.
My legs start to feel heavier and I find myself lifting at the hip as much as anywhere, pulling with my back to get the hip lifted and the leg airborne. The effort is laboured and my back begins to take unfamiliar strain. My feet scuff the ground and I become unstable. My hands ball into fists, something my physiotherapist calls a kind of useless compensation. I lose control over my lower trunk and my stomach begins to bulge as my muscles, usually visibly toned, can no longer stabilise my core. My bladder begins to spasm and threatens to empty spontaneously. My face hardens into a grim determination, the effort to move takes abundant concentration. Muscles begin to hurt. MS-affected systems begin to fail generally. My hands become numb, shaky. My vision blurs. I start to panic as my body slips further from my control.
As we approach 1000 metres I’m no longer safe. My feet plant near intended targets but commonly miss their marks, necessitating a compensatory stumble. A trip would floor me. I now walk on paper straws and if they bend they will crumple. If I crouch at all now I will not arise.
I was overextended in this way when I bent to inflate my car tyres at the gas station nearby. I crouched and then commanded the legs to extend, my form to rise. They did not respond. I grabbed hold of the car with my hands, searching for any solid purchase. I found the doorframe, pulled myself to a seated position on the backseat. My useless legs dangled limply from the side of the car.
This is dynamic disability. I have enough strength to hike a mountain and the confidence to dance all night, but then within 1000 metres I can no longer stand. It will be hours before my strength returns.
This is why I use a wheelchair. From aboard the Rocinante I can dance, glide across fields and up hillsides, go as long and as fast as I dare. In the Rocinante I am truly free.
But when using the Rocinante my legs are rested and paradoxically I don’t feel like I need her. I feel that familiar confidence in my strength, like I could run, like I could hike a mountain.
When I’m using the Rocinante I feel like I’m faking it.
Contributing to this feeling of faking is a strange social boundary that comes with wheelchair use. I first encountered this social rule when I was at the airport in my last wheelchair, Firefly, and the Californian security officer pondered openly how I would get through the security scanner. I mused that I could walk, and I stood, and the security guard looked at me somewhat agape, marvelling that he did not expect me to be able to do that. We laughed and I refrained from dancing just to show him what I could really do.
What I realised is that when you’re using a wheelchair no one expects you to be able to walk. Rising from the chair is somehow socially extremely strange. Because if someone could walk, why would they be using a wheelchair?
And this, then, is the social boundary. If I had danced at the airport I wonder what the security officer would have thought. Would he have known enough to know dynamic disability? Would he have understood MS enough to know that the first steps are not equivalent to those that come after? Would he simply think me a fraud?
So I have a confession to make. When I’m using the Roci around people, I don’t ever stand. I can feel eyes on me whenever I’m using the wheelchair. I don’t need the spectacle of getting up to grab a glass of water. Entire rooms of people would stand back in awe, discover deities, search their hands for signs of undiscovered healing powers, dance in celebration for what is nothing short of a miracle.
Yeah there’s no chance I’m getting out of the chair in public.
But guess what dear reader, when I don’t stand but could…