Do I walk to pick up my wheelchair?
My walking is weird. I used to walk every day, and run three times per week, until one day I could no longer quite make it around my usual walk. I wasn’t out of breath, far from it, but gradually I found that my legs simply wouldn’t obey me. I don’t mean they just trotted off to a coffee shop for a hot chocolate, but rather…
…my legs were hearing my commands from the next room, with headphones on, in space.
The experience is a strange one to communicate. Imagine, if you will, you’ve been sitting on the sofa with your legs underneath you and you go to stand up. You suddenly realise that you’ve been trapping your nerves and when you stand up your legs feel strange, they feel weirdly numb and quickly become tingly and tickly, and when you try to move them they’re sluggish, movements take surprising concentration and effort, and you feel like a giant toddler taking their first steps but when you look up the people around you aren’t celebrating and someone is reaching for a phone to call for help.
Well my legs are a little like that, but in our example the more you walk the more messages can get through, your leg sensation gets better and better and you’re able to walk with more characteristic grace. In MS the more you use them the worse they get. For me, I don’t get any sensory symptoms, those remitted, but I do get motor symptoms. What results is that the first 8 minutes of walking, the first half-mile, and my walking is great. I can walk, jump, even dance. But the more I use them in that window, the weaker they become. They don’t then regain their strength unless they’re not used for abour an hour.
There are times when the impending doom of my leg weakness is pretty hilarious.
I was playing in VR in my living room one day, pushed my legs too far, and started to sink slowly to the floor while reloading my weapon. I was like a punctured hydraulic lift and my legs simply couldn’t go up, they could only go down, really really slowly. I shot the next skeleton from the living room floor.
There are times when things are more serious. Caz and I went to the beach from a little place we’d hired in Devon, a single mile away. Those first 8 minutes feel so good that they can easily fool me into thinking that I can do anything. We walked together and sure enough things started to get wobbly after 10 minutes. After 12 I’m slow, trudging, laboured. After 14 we can see the beach and I’m in tears. Caz is gripping my arm to take at least some of the weight. I drag my ass to that beach with everything I’ve got. To everyone else I’m struggling at the simplest of tasks, but to me I’m walking in a hurricane.
Now I need to tell you something really embarassing.
I’m due to pick up my new fancy wheelchair before long. It turns out that the wheelchair dealership is easily within a couple of minutes’ walk from the car, and I’m not sure my car can hold two wheelchairs. So my thought is that I go to pick it up without one, I spend the leg strength I have walking in and wheeling out. But walking in to pick up my wheelchair makes me feel… strange. In fact my walking for those two minutes isn’t just going to be me walking, it’s going to be me walking comfortably, I could even do a little dance on my way into the dealership.
I feel like a fraud.
It’s like I can’t quite rationalise the Cora in the first 8 minutes of our walk to the beach with the Cora in the last few, like we’re not even the same person. The wheelchair isn’t being picked up by the Cora who can’t walk and needs her wheelchair, it’s being picked up by the Cora who dances at weddings. That Cora doesn’t need a wheelchair and the notion that she’s going to pick one up is frankly laughable. But I think this is a hesitation a lot of folk using wheelchairs experience, made manifest in George Takei’s now deleted meme showing a wheelchair user standing to get something off the top shelf with the text ‘there has been a miracle in the alcohol isle [sic]’. The meme is only funny because there’s a general view of wheelchairs as being for people who can’t walk.
The top comment? ‘She may have MS…’
So here’s the question, do I walk in to pick up my wheelchair? I think the only reasonable answer is ‘yes’. And yes, we need to absorb the stares and the confusion and the likely interpretation that I’m malingering from passers by, their stares are not new to me. But maybe what we need to do more than anything else is to be genuine, to show what MS as a disability genuinely looks like.
You’ve given me strength, oh treasured community of ours, and I’ve decided I’m going to walk in to the wheelchair dealership (I’ll refrain from dancing) and wheel back out; this is simply the reality of life with MS mobility challenges. While there will be onlookers, there are always onlookers, and I just need to take a deep breath and move through the world genuinely, knowing that I do what all my disabled kin must do…