Firefly finds a new captain
The lady fixed me with a strange expression. Our conversation stuttered like an old engine, searching for the oxygen needed for the next sentence. Her expression was one of surprise, almost incredulity, to the extent that she searched my face for a moment for signs that I was joking.
‘I’m not kidding’ I say ‘Wheelchairs are hella fun’
I had decided to donate my old wheelchair, Firefly, to someone in need. It turns out that you can’t easily give a wheelchair away and the person I spoke to at the British Red Cross told me that even they have closed down their outlets and while they’d have snatched my hand off a year ago to get my wheelchair, now they had to decline my offer. There is something woefully wrong when it is this hard to give a wheelchair away when simultaneously access to good wheelchairs is notoriously poor.
It was on Freecycle that Firefly finally found her new home and family. A kind woman had got in touch because her husband had Parkinson’s and they had been using an old wheelchair that I think had been constructed shortly after the fall of the Roman empire; if someone had told me that this thing was once used to get Churchill out of bed I’d have believed them. The kind woman was interested to get hold of something newer, lighter.
Right away I can see how different our lives are, and how strange I have become to most people. To me, Firefly makes so much noise that pigeons take flight in Cumbria whenever I start rolling out of my front door, my knees are so high in the air that someone made a subreddit to celebrate this new local landmark, and whenever I turn too fast I get contacted by local law firms looking to sell me personal indemnity insurance. To this lady, though, Firefly was svelte, nimble even, and she could get it into and out of the car herself, and that was revelatory.
I could see the distance between us when she went to pick up the chair, looked at me with some mild shock, and I started to apologise for Firefly’s weight at the same time as she went to compliment how light she was.
I told her about the Rocinante and how pushing around on my chair is one of my most fun things to do. I mean maybe I don’t get out all that often, but yesterday I pushed for 5 miles during the day, my workout playlist burning through my ears, and I was having so much fun. I mean, honestly, I was flying down hills, skidding around corners, passing slow joggers on the bend. I really can’t tell you how fun it is to be sat waiting for the beat to drop, getting passed by people with the same sad sympathetic smile, only to fly past them a few moments later, pushing to every beat and beaming.
So when I referred to the wheelchairs with this woman the two of us weren’t speaking the same language. To her, the wheelchair represented a loss of freedom, slowing down, another splinter of independence whittled from the life she and her husband had sculpted together. She was clearly a member of the kinship, though, defiant against what was happening, discovering what she was capable of as she learned to become handier, she told me, to fix things that were broken, to become strong.
But when I said, in passing, that my new wheelchair is much more fun, the concept that a wheelchair could be a good thing, that it could be freeing, that it could even be joyous, seemed alien to her. She looked at me with incredulity, wondering if I might even be making a fairly insensitive joke.
Our conversation kept misfiring, she would react to me telling her I had MS with sadness, empathy, and to me my revelation was like I’d just told her my hair colour. The kind woman started to comfort me, offer condolences, and then it was my turn for my face to turn a little strange, like she’d just pulled an overripe apple from beneath her armpit and handed it to me.
Not once did I pity her husband, not once did I offer condolences, sympathy. I wonder whether this lovely lady thought me perhaps a little heartless, though she didn’t show it. It wasn’t deliberate on my part, I didn’t make a conscious decision, Parkinson’s sucks, MS sucks, universal entropy is an asshole, and I’m clear on that point. I just don’t see any of this as pitiful any more.
And that’s what hit me about our conversation. It wasn’t the distance between us that startled me, it was like talking to a version of my past self, it was the distance that had suddenly become apparent between who I once was, and who I have now become. What’s whiplashingly wild is that I’m not talking about a version of myself decades ago, I’m talking to me from a year ago. Before I started rolling with Firefly I’d have seen MS and Parkinson’s in the same way, with sadness and pity and condolences and flowers and thoughts and prayers and ‘do you need help?’ and ‘are you cold..?’. And now… I don’t.
Now… MS is just a fundamental part of me. Now I don’t have MS, now I just am Cora, and Cora happens to be someone with MS. Maybe none of this makes a lick of sense, but MS is a part of my identity in the way that being trans is a part of who I am, it doesn’t make me any less Cora, if anything being trans and having MS both make me more Cora.
Maybe this is what it is to be disabled over time. You realise that a disability is like any other feature of a person, you didn’t choose it, you have no control over it, and it doesn’t make you or your life any less.
So my hope is that this lovely lady I met today saw something in me, a person that she and her husband might one day become, someone looking back on her newly diagnosed self with understanding and with not a breath of pity. Someone looking at their past self, barely a year or two ago, and offering just one message…