I (DON’T) SWEAR

Posted 7hrs ago
by Richard King

Share

by Richard King

It’s ironic to find myself in a cinema watching the terrific new biopic “I Swear” about Tourette syndrome campaigner, John Davidson (played beautifully by Robert Aramayo).

Not, of course, that a cinema is an unusual place to see a movie. But that, for John with his aggressive vocal version of TS, movie theatres - like the libraries he fantasises about visiting in the film - are almost certainly off-limits.

But it’s 10.30am on a weekday morning at Everyman Reigate and, being the only one here for what is now essentially a private viewing, I have the luxury of blinking, scrunching, twitching, wriggling, squirming, sniffing and, yes, laughing and crying, as much as I like.  

It wasn’t until the age of thirty-two that I was diagnosed with Tourette syndrome. Not the “swearing” kind (corprolalia) that is the most obvious characteristic of John’s condition. But the kind that produces other involuntary movements and sounds, the tics, tensions, hums and sighs that I share my life with.

But why had my TS taken so long to diagnose?

Well, until that moment, twenty-two years ago, I hadn’t told anyone. Not about this, not about any of the things that troubled me. Not one thing, to one person. Even after my diagnosis, and a brief period of sharing the news with close friends and family, I packed it all away again. While the world was beginning to reach out, to demystify and destigmatise mental health, I was backing away.

Vulnerability and weakness were promoted as positive characteristics, even strengths. Which, I felt, was all very well in theory. But in practice? For me? Or for others like me? Business owners, bread winners?

As an employer and a parent, you are required to be robust, resolute, reliable. Your staff want comfort, about the viability of the business, about their jobs. Your family, reassurance about their home, and that year’s all-inclusive summer holiday to Kos.

You might want to dangle your leg over the side of the wheel, the sole of your shoe scraping on the soft tarmac, slowing its revolutions, until you can leap off. But what next? Isn’t everything except death and, for some, a fate worse than death, failure, on that wheel?

So, you stay on, therapy or medication or drink, or a change of diet or a new hobby or religion or a pet or an overdraft extension keeping you there. Sometimes, mostly in fact, nearer the centre, a little giddy but stable, eyes bright enough, living, or at least existing. At other times, less often, clinging to the outside rail, woozy and nauseous, puffy faced, tearful, close to letting go. But the wheel still spins inexorably on, whether you are on it, or not.

Although disappointing yourself, you see no value in vulnerability. And having no appetite to reveal, to anyone, that things aren’t working out quite as well as you’d hoped, or promised, or boasted, you hide everything away: unsaid, undiagnosed, and untreated.

You go on. You have to.

But by August 2024 my Tourette’s – always worse in the air-less heat of summer – had become unbearably intrusive. My hand trying but failing to cover escalating scrunches, pouts and eye rolls. The involuntary tensing and squeezing of my pelvis or abdomen causing debilitating indigestion and cramps.

My usual defence, a finely tuned but exhausting method called “masking” (the physical suppression of tics) was beginning to fail me. And mounting difficulties at work and home had also awoken, whipped up, then liberated a bespoke stable of other neuro-disorders that I’d kept tightly reined for the proceeding thirty years.

My general health had also begun to slump, then crumble. Previously once-fortnightly tension-headaches now struck almost daily. My blood pressure spiralled to levels that even a well-stocked armoury of Ramipril and Amlodipine couldn’t bring down. I didn’t want to go to work. Or anywhere really. I hadn’t spent a night away from home in over fifteen months.

One day, staring blankly at the anarchic cubism of the desktop on my MacBook, elbows on the desk, chin resting heavily on cupped palms, right foot shaking uncontrollably, I’d had to acknowledge this was a nose-dive I couldn’t arrest.

So, I stepped off the wheel. Just before I was thrown off.

But, of course, it couldn’t be as easy as that. And it hasn’t been. Ties, responsibilities, and conventions, are difficult to break. And I was violently swung around as I tried to free myself from commitments I could no longer keep. It got worse before it got better.

The indefatigable and obsessive (compulsive) drive that had made me ill, was the very same trait that had underpinned the success of my businesses and provided my income. But it has gone. It had to go.

I’ve worked for myself since I was twenty-eight, so haven’t had a regular job for twenty-six years. I’m now searching for a different way to live, and a new way to make a living. I want to write, to be an author. But it’s a work in progress, and a long shot.

Happily, the headaches have nearly gone altogether; the tics have eased. My blood pressure is on the way down. I’ve been diagnosed with moderate to severe ADHD and have an assessment for autism pending. I’m assured that, even in my mid-50s, there is some help available. So, I’m giving it a go. I feel cautiously positive about the future.

Ultimately, though, the cruel truth is that Tourette syndrome is incurable. The challenge – or opportunity – therefore is to change the environment those with TS, and other similar conditions, live in. To convert attitudes and perceptions, through education and information. To transform the landscape. And that is what John Davidson (MBE) has dedicated his life to.

But there’s still much work to be done. On the very rare occasions I’ve told anyone I have Tourette’s, the most common response has been: “No you haven’t”.

To which I sometimes, by which I mean always, reply: “Yes I f**king have”.

Richard King

X: @DorkingRichard

Instagram: @DorkingRichard

Return to blog