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Nothing is more punk than multiple sclerosis

Nothing is more punk than multiple sclerosis

For many years, I tried to ignore it. I pretended it wasn't real. It was just a spook, a figment. Or rather, it was only real inasmuch as I breathed life into it.

My mental fidget. My hyperactive leg muscles.  The constant, recurrent drumbeat in my head that invites me to shake my closed fists up and down. I can see the sticks, even if you can't. No, I don't play them, and no, I've never had a percussion lesson. I couldn't concentrate for long enough.

Flow is the feeling of being so absorbed in an activity, so utterly convinced of it, so committed to it, that you forget you are doing it. In an eternal present, the past and the future both cease to exist. You yourself cease to exist, when it is at its climax. If the past is regret and the future is anxiety, then flow, absent of these feelings, must be pleasure.

You may feel it at orgasm, or if you ever tried ecstasy, or, perhaps more mundanely, when cooking or gardening. On a good day, when the fatigue takes a rest, and my legs fall into astrological alignment, I might feel it on my bicycle. It’s something I’ll always associate, though, with the many, many hardcore punk shows I attended as a teen/young adult. Those kids stomping around the stage in the intro to The Big Takeover certainly felt the flow.

I was a fucking loser. My body was always misshapen. It jangled and clinked. My hands would fall off my arms. My fingers would bend, tense up, clutching onto the air  And my head was always rolling off my neck. It was too bulky, like an awkward piece of luggage that jams the carousel.

And everyone could see it. People stared at me from as young as I can remember.

This world was never built for me. I tried my hardest to stop the drumming, to swallow my belly, to prop up my jawline...

But it was always there. All the memories I remembered and all the fears I foresaw.

Flow was only to be found in the ratatat tat. Bumta bumta bumta bumta. Onetwothreefour…!


When I think about it, the diagnosis seemed like less of a shock, less of a bomb blast in a crowded place, and more of a light surprise, the sensation of waking up to look out a train window at an unfamiliar destination. You know not the place, but you do know that it is the right place. 


My first hardcore show was a vindication, 4 men (back then, it was inevitably men, less so now) in black shirts, electrocuted by their instruments, all flailing cables and hair, contorted bodies, possessed, untameable noise, the urgency of a lifelong death rattle. Teenagers throwing themselves at the stage, fingernails creating grooves down the singer's clammy stubble as they howled and screamed.

I knew it was out there, I knew it existed.

We were all so angry...or were we just over-stimulated? It all meant so much,  even if we weren't sure what it actually meant. Converge's lyrics are indecipherable, but Jake Bannon's vocals were more profound than anything I'd ever known. The first time I saw them, literally in a Scout Hut, I couldn't talk for a day after. Everything had been said.

For five years, I barely sat down. My wrists would get sore from the stick flick. My elbows were bruised and distended from failed stagedives. None of my shoes fitted - too much stomping. I limped around town, still sweating from the last show. On top of everything else, my oddness manifests itself in my left-handedness (and left-footedness), and one time the sole of my left foot ripped open in an onstage caper and took to carrying around sellotape to fix it. I couldn’t afford a new pair; all my money had gone on shows. Shows and vinyl. I was seeing a girl, until she saw the shoe, and decided it wasn’t working.

I gave myself tinnitus, and stopped being able to pick out individual voices in crowded rooms; one thing I later tried to blame on the MS. But you don’t have the hearing loss lesion, my confused Neuro told me, many years later.


Walking with a stick and urinating in public (since there are no fucking public toilets anymore).  This is what it means to be a punk in 2023. The world has damaged me, and I have damaged myself. I stick out, I lose, and I can't stop thinking. The ratatat tat of my form pounding the pavement, heavy and deliberate. The automatisms of steps, breaths and bodily functions are no longer, no flow to be found there. They must be anticipated and prepared.


Post-diagnosis, I made the effort (™) to go and see Fucked Up. I emailed the venue in advance and they kindly assigned me a stool next to the bar, which I perched on serenely while they played their newer stuff. Until, that is, I heard “Baiting the Public” in the encore, and I promptly kicked the stool and launched myself into the pit, accidentally almost gouging someone’s eyes out with my stick in the process. I can’t walk in a straight line, which may make me the perfect hardcore dancer...


None of the assumptions, the apparently pragmatic rules that govern life, make any sense anymore. They’re written by serious, sensible people. People who can still operate a pen. People who still think standing up is good for them, who can concentrate in a long meeting. Not like me. This world is not for the likes of me.


The disabled citizen is isolated, restricted, siloed, pushed to one side, in order to preserve the smooth, frictionless flow of the able-bodied majority. Most of us aren't disabled, after all. And hardcore means nothing to most people. It's a niche thing, slightly cultish, if anything. You wouldn't want them to erupt all over our normal daily lives: it’s brash, ugly and discomforting. They have their space, we have ours.

They say that in a cruel world, the punkest thing you can do is be kind, but I’m not sure I agree: I think the punkest thing to do in a cruel world would be to destroy every piece of inaccessible architecture, design and public life. All of those cursed concrete steps, chipped and damaged (Waterloo station).  The narrow pavements that dominate Tower Hamlets, which are always half-blocked by roadworks. The café furniture in the Casco Histórico of Seville which creeps further and further into my walking space (I require a wide radius for my radar gait). The disabled toilets, which - at best - are folded into the women’s. You see, disability doesn’t match the narrow taxonomy of masculinity here. MS has also ejected me from the boys’ club, but that’s another story.

All of these cities, which were designed at a time when the disabled were locked in attics and starved, or treated as insane and forcefed chemicals. It is they who light my touchpaper, their ghosts whose breath ignite the sparks.

If it’s not accessible, it needs to go…

And then, just like that, I would recover the ratatatat, the boomtish boomtish, the flow.

Yellow ribbon

About the author


37, Spain, Relapsing Remitting, diagnosed September 2018