What matter wounds?
My journey with mobility challenges began 2 ½ years ago, when my last relapse changed my ‘couch to 5k’ into ‘mostly couch’ and the only ‘5 k' I was gaining tended to settle around my midriff.
I used to walk 30 minutes every day. I'd use that time to talk to myself, review my sleeping, my anxiety, solve problems, celebrate successes. People living on the corner of my road got little daily updates through their window like free episodes of a very trans disabled ‘Fleabag’. It must actually be weird to them that I just one day stopped showing up. Like my series got suddenly cancelled by a relapse. Clearly I'm not quite as good a writer as Phoebe Waller-Bridge… she'd never get a show cancelled…
I've never walked that route since.
I got a wheelchair but even then I didn't start off feeling particularly capable. Last year I was rolling with my first wheelchair, Firefly, and we visited the Lake District. We decided to walk from a car park 15 minutes to a pub. I rolled the distance. Steep inclines over gravel paths nearly killed both me and Caz. My arms had difficulty mustering the strength to open crisp packets and mobilising the chair on gravel without a front flywheel was like pushing a car through marshland. Caz tried to push the 100kg that was me and Firefly and working together we gradually inched our way to our destination. The slow progress left me too long between toilet visits and I very nearly left a trail to match my snail's pace.
Peeing yourself while sweatily grinding your tank of a wheelchair toward an inaccessible pub really makes you review your life choices.
Oddly, though, I have never really felt any shame about it. I didn't hide who or what I am. I never have.
I worked hard. I built up my strength and stamina over two years of training. And then today came a real test of how far I'd come.
Today, I hiked my way solo two miles off road near Baggy Point in Devon. Muddy, narrow trails, through hammering rain, with the sound of waves roaring beneath the hillside, did not deter me in my trusty wheelchair, The Rocinante. With the MkII flywheel lifting the small front wheels I can wheel virtually anywhere and wet, muddy, with music in my ears and my heart, I smiled with joy throughout the push.
When people hear that I called my wheelchair the Rocinante, they often wonder whether I named her after Don Quixote's horse. I didn't, of course, I named it after the ship from The Expanse, but maybe the horse is more appropriate.
To other people Don Quixote's horse looked thin, weak, even frail, but to him this was his mighty steed. His view of himself, of Rocinante, is what pushed him to adventure.
When I was wheeling up the steep muddy hills I met a man who smiled as I passed. He was surprised, nearly incredulous, at me hiking uphill in heavy rain and mud in a wheelchair. But he didn't pity me. He admired me, commented on how strong my arms must be. He fistbumped me.
Now sure, he didn't give me his number. I was strong but I'd left attractive behind as soon as it started raining, and being this covered in mud with hair slick to my face, sexy was just a particularly strong option in scrabble. But honestly, being respected in the chair… because of the chair… and who I have become in it… I loved it.
What I love so dearly is how this reaction so remarkably affirms how I see myself. The idea that the wheelchair could be the tool of a hiker, a sportswoman, someone who flies downhill and laughs when she skids round a corner. That her pilot isn't suffering, but is chasing the high, a true wildcard, is revolutionary. This view throws off the assumptions that are so frequently made about disability, and about wheelchairs especially.
When we look at wheelchairs we see what we have been taught to see. We see them as thin, weak, even frail. But when I sit astride my wheelchair, I no longer feel that way about her. I see her as strong, noble, mighty, and together we do things that might seem impossible.
The Rocinante really is quixotic.
So here's the ultimate question: if my quixotic view of the Roci, of myself, is increasingly realistic, what is now possible? What adventures now await?
I don't know. I do know that MS is going to impose new limits…