How Do You Live In a Body That Doesn’t Feel Like Yours? If You Have No Choice, You Just Do.

Photo by Ford Motor Company via Flickr (CC BY 2.0)

It’s hard to choose a passage to highlight when every paragraph of an essay makes you stop to catch your breath because it’s so lovely, or candid, or difficult. Such is the case with Paraic O’Donnell‘s Irish Times essay that juxtaposes the progression of the seasons with the progression of his Multiple Sclerosis. I’ve chosen one particularly no-holds-barred section that’s both blunt and darkly comic, but I could just as easily have chosen one of dozens of other paragraphs.

In software engineering, there’s a concept called graceful degradation. That’s where, if something unexpected happens, the system doesn’t just silently lose its shit. It issues a brief statement and tries to get its affairs in order. Having performed these final acts of heroism, it can go tits up with a clear conscience. That’s graceful degradation. It’s an elegant term, I’ve always thought.

Anyway, with multiple sclerosis, graceful degradation is very much not a thing. It’s the opposite kind of deal, in fact. When you’re exhausted, which is most of the time, what happens instead is graceless degradation. There’s just no kind of showmanship or dignity to the proceedings. You’d see better performances, in the collapsing line, from a fucked deckchair or a condemned block of flats.

It’s a shitshow, seriously. You hurt yourself, sometimes, just trying to sit down. Actually injure yourself. It’s a fucking fiasco, is what it is.

And you feel, after exertion, like a crash test dummy. You feel like a shit zombie, like a tortured golem. You can’t cry any more – this is still a thing, for some reason – and you’re getting resentful about that, because sometimes you desperately want to.

You feel, sometimes, like a motherless child.

These, then, were the prevailing conditions in the spring of 2013. This was what I was up against. And faced with odds like these, I did what anyone would do. I bought a colossal number of plants, took a boatload of drugs and embarked on a massive construction project.

Twitter is often a festival of hate and ignorance and poop, but sometimes it also brings you links to pieces like this, pieces that you’d never have seen otherwise, and then you remember how being connected to the whole world can be a beautiful thing.

Read the essay