Twitchy and me – My life with Tourette’s Syndrome

It may seem to be a bit weird to say that you are happy to know that you have an incurable condition whose main forms of treatment are worse than the actual illness itself, which, in its most advanced state is seen as socially unacceptable, and may, or there again, may not, get worse as you get older, is exhausting, bloody uncomfortable, and at times an absolute pain in the bum. But when I discovered I had Tourette’s Syndrome a few years ago, I felt an amazing relief that at last I had a name to hang my hat on that explained the Pandora’s box of twitches, sniffs, moving body parts and over-zealous use of the ‘F’ word that had pestered me all my life.

When I was in my teens and dealing with the latter stages of puberty, (or ‘perturbity’ as my father referred to it in a wonderfully unintentional malapropism, which, given the state most kids get into during their early teens, isn’t a bad substitute) I dreaded visits by relations, and, a few years later, by new girlfriends. At some time during the visit dad would bring out a photo of me he’d taken when I was about six, with my nose pointing itself in the direction of my right ear and my left eye tightly closed as if I’d just given the camera a great big wink. When I finally managed to grab it out of his hands and tear it into shreds after years of this supposed piece of ‘fun’, he was highly offended. Even though a considerate and caring man most of the time, it had never occurred to him that this little bit of ‘fun’ had been devastating to me, and a reminder of something I had to deal with on a daily basis and, on fortunately few occasions, had had to put up with ridicule because of it.

Despite the obvious awareness I have of my Tourette’s, mine is a moderately mild condition, but there have been plenty of times in my life when I would gladly have torn out my left eye or had the lid sewn up, if only I could have stopped the tortuous twitching that tired me so much and made me almost ashamed to show my face in public. I can look back and laugh now at the time when as young officer in the British merchant navy I took to wearing an eye patch for a few days, using the excuse that my eye was watering and painful and I wanted to keep it away from the light. Unfortunately, the piratical look didn’t go with the gold braid and starched white shirt of my uniform.

Most people who have heard of Tourette’s Syndrome will know of it because of one of its most uncomfortable and disturbing manifestations, the uncontrolled shouting of obscene language. This is called coprolalia, and actually only affects a small percentage of Tourette’s sufferers, about one in ten, although it is usually the symptom that is made most of when people talk about Tourette’s. Fortunately for me, it’s not something that I exhibit, other than a few choice expletives thrown into a conversation that my son calls my ‘industrial language’.

The turning point came in my late thirties. I can’t say that I learned to love my facial shenanigans, but at least I learned to treat them with a sense of humour.

Kathy was a delightful, tall, curly-haired blond who shared my life for an all too short time. We were chatting one day about my facial twitches and I told her how uncomfortable they made me feel when I was with someone I cared for, as if somehow they were a deficiency in my character that would put any would-be lover off. The darling girl uttered the magic words that released me from those pervading thoughts of shame. “But Derek,” she said, “it’s so sexy!” I spent the rest of the day twitching like crazy intentionally even at the times when my eye didn’t bat away of its own accord.

From then on I began to see the humour of the situation – and there were plenty of humorous situations as far as the twitchy eye and bendy nose were concerned. Years later, when I worked as an audio producer, I began to recognise the form the sound wave of my compulsive sniff took when I was editing interviews, which certainly made editing quicker.

The mild form of Tourette’s that affects me is surprisingly common, and it’s said that around one in a hundred people in the UK have the condition. Not all tics are symptoms of Tourette’s, but one of the most common is the eye twitch, an inadvertent wink. It was almost impossible to stop myself giggling a few years ago, when I had dinner with a close friend, who I always refer to as ‘The Beautiful Anna’ for the simple reason that she is. She also has the eye twitch, but in her right eye, so when we sat opposite each other, with our laughter and smiles, we could have seemed for all the world like a couple of lovers, winking at each other in delicious anticipation of what was to come. Oh Lord, if only….!

One of the most public moments of daftness was when I was at a meeting with a group of people from a charity that helps the homeless. It was very relaxed and the conversation flowed easily. I made some comment, I’ve no idea now what it was, and a young girl sitting opposite me said, “He’s joking, I’ve just seen him wink.” She’d seen my left eye twitch. I paused; she looked disconcerted, until I laughed and said, “Afraid not. That’s a twitch. I wink with my right eye.” It could have been an embarrassing situation, but because I laughed, she laughed too, and so did everyone else. If you don’t get hurt or embarrassed by it, neither will anyone else.

My favourite story, and possibly the most insulting if I’d let it be, was when I was having dinner at a restaurant with a friend who owns a small rural hotel in Spain, and a couple who stayed there for a few days. Not exactly a ‘couple’ couple, he was gay and she wasn’t, but they had spent many holidays together and shared banter as if they had been married for years.

The chap was delightful company; the woman very self-opinionated who had set against me the moment I walked into the hotel where I said, “Hola, chicos. Como estais?” to the group of builders who were taking a beer after a day working on the house who she’d being trying to charm in pidgin Spanish and failing badly.

In the restaurant she had been dominating the conversation all evening. She suddenly turned to me and quite aggressively said, “Derek, have you got a cocaine problem because you’ve been sniffing all night?” “No,” I said, “I’ve got Tourette’s Syndrome,” and left it at that. As the words escaped my lips her pal, who had chosen to drink G&Ts instead of wine with the meal and had just taken a mouthful, snorted it back into the large glass, most of it bouncing back into his face and dribbling down his chin. It was wonderful to see her face sag in shock and embarrassment and she immediately started mumbling all sorts of apologies, which I totally ignored. A sideways glance from her partner showed that he clearly thought the hole she was in was big enough and it would be for the best if she stopped digging any deeper. I suppose I could have let her off the hook and made a joke about it, but I didn’t. She’d been insulting and deserved to suffer the embarrassment that she was so obviously feeling. A little power can be a marvellous thing at times, and this was one I pumped dry.

People with Tourette’s Syndrome aren’t psychologically impaired, we’re not intentionally obstinate, or particularly unintelligent. Most people with the disorder lead normal, productive lives, and some even excel in their chosen professions. It’s thought that both Dr. Samuel Johnson, the famous British poet, essayist, and lexicographer, and Mozart both suffered from Tourette’s. As did Howard Hughes, and even though his eccentricities became severe as he got older, it didn’t stop him from being extremely successful as a film director and producer, and in the world of aviation, where he owned a number of airlines, and at one point held a quite a few air speed records as a pilot.

So it seems I’m in good company – okay, famous, if not particularly good. I’m lucky that my level of Tourette’s Syndrome is pretty mild. There have been times I’d rather be without it, but I take heart in something a friend reported to me that my girlfriend of the time said when they were talking about how embarrassed I sometimes felt about my twitches and sniffs. “But that’s Derek.” she said, “It’s one of his endearing mannerisms. He just wouldn’t be Derek without it.”