I have been asked many times exactly what Tourette’s does to me, how it manifests day to day. There is such a frequent shift in severity, frequency, movements and physical toll that it’s of limited value to produce a simple list. Despite experts suggesting the condition gets better with age, mine has worsened in the past eighteen months to probably near its most challenging point. That’s not to say I’m one of society’s growing anti-expert movement. There’s no obvious trigger for it getting worse; stress comes and goes as it would for anyone, although tiredness and insomnia perhaps lessen my ability to control it. The less healthy I feel, the harder it is to fight it. It’s basically a twitchy Olympics. Which I think should exist…except the javelin. I’ve injured myself badly enough with a spoon.
Most days of my life when I go out, people notice. I savour the days when that’s not true. Tics may be disguised as stretching, incorporated into normal movements or just not visible to most. They may also just come out on days when I’m too tired to control it, or some situations where I never seem to have much say in the matter. It can change over time as to which tics or which areas of the body it focuses on the most. While typing this helpfully it seems to be my left hand. I recall years ago explaining one particular tic from my childhood and within days it had come back, despite not having experienced it for years prior to that conversation. This is a risky blog.
There is obviously a large mental impact of Tourette’s too, from depression and anxiety to OCD and ADHD. Basically all the acronyms. With each so complex and so varied from person to person whether they have Tourette’s or not, I’ll be saving those for a future blog and now focusing on the physical reality of the condition. I’m sure I’ve forgotten some, or incorrectly remembered the severity of others, but hopefully it will provide a glimpse into the possibilities day to day.
Starting at the top, well thankfully my hair doesn’t twitch. Strong hold hairspray mainly. I’ve tried this on other body parts with minimal success. That said, my arms and eyes do tend to twitch away from the mirror when I’m doing my hair. This explains why it always looks so good. I’m now at the age of being delighted to have bad hair rather than no hair though. In terms of the entire head, the nodding tic was severe when younger leading to predictably creative nicknames. This was far more distressed pigeon than politely agreeable man. It would happen everyday, hundreds of times at its worst and couldn’t really go unnoticed. Eventually I controlled it more and it just about disappeared until recent years. Now it’s rare compared to others although it happens every few days usually when alone. The force of it, basically putting your brain in a NutriBullet, does cause a lot of headaches and dizziness. Overall it’s not one of my favourites.
I can’t imagine many sufferers have avoided problems with their eyes, whether tics are focused on the eyes or they’re disorientated due to head or body movements. At the best of times my eyes feel uncomfortable. Besides causing headaches they’re rarely painful but blinking too often becomes a conscious effort. Can anyone blink normally when they’re actually thinking about blinking? It’s like trying to appear sober when everyone is staring at you. I’ll screw my eyes up as tight as possible, open them as wide as possible and everything in between. The tic is the feeling in the eye muscles, the result is eye strain or not being able to see where I’m going, making crowds problematic. Conversely, some days I will cope just fine, such are the inherent contradictions of the condition.
When not being outside much I’ve found my eyes take longer to cope again. Fast moving objects, bright lights and crowds all take their toll. I once spent a week going to a very busy shopping centre daily to retrain my eyes and body to get accustomed to the outside world after a long period shut away. It’s not that I can’t technically see, and this can be problematic with eye tests. If I focus properly and stop twitching then I can read letters and see images, but in the midst of an eye test, sometimes I can’t. Besides walking into lampposts or falling in canals the most common side effect is accidentally staring at the wrong people, looking extremely disinterested or sarcastic, or even winking at girls….or guys in pubs.
While writing this, I took a break and went to the supermarket. I felt fine, or normal for me at least walking in. Rapidly this descended into disorientation. Staring at all the different products in the aisle, the lights, the colours, it all began to blur together. In that situation my eyes seem to become somewhat kaleidoscopic, usually resulting in security guards watching me closely. Some neuroscientists suggest up to 90% of what we see is merely perception, our own internal generation of reality. With that in mind it’s no wonder Tourette’s can lead to such disorientation and bewildering visuals.
Moving down, my nose doesn’t technically twitch, but like many I’ve suffered from sniffing and other noises. That was predominantly when I was a lot younger; some tics just disappear or change. I also once hurt my nose walking into a wall with my eyes closed, but I suppose that doesn’t count.
Regrettably I’m devoid of the traditional much-loved in the media shouting and swearing. However, when growing up there would be random noises all the time, coughing, and the repetition or emphasis of certain words. While vocal, it was really about the physical feeling in the mouth or throat. I have barely had any experience of this in the last decade, until recently. The vast majority of people I know won’t have noticed, it’s often when I’m alone or in public by myself anyway. Strangers notice, there’s little doubt about that but I’m used to it and just pretend they’re looking because I’m famous.
I’ve experienced a lot of jaw pain due to grinding teeth or just clenching jaw muscles over the years, and used to bite the inside of my mouth. I’m not even sure if that was a tic or a method of controlling other tics. Either way, it wasn’t ideal. Then there was the swallowing tics, which sounds disgusting but didn’t actually involve swallowing anything, just the sensation happening over and over until I had a sore throat. More recently there have been breathing tics, almost as if breathing becomes a conscious activity for a while. That has been one of the most unpleasant tics and thankfully it’s not a daily occurrence. The tic might be the feeling of your lungs being as full as possible, or as empty as possible. Often, whatever the body part involved, the sensation you need can’t be found and you’re left in limbo. The breathing was often combined with other tics, as often they all need synchronising together. While several things may be happening at once, people next to me might not see anything. It’s amazing how much energy can be exerted unnoticed.
Neck and shoulders
My neck bears the brunt and has been uncomfortable for most of the last twenty years. The range of severity is huge, from the common but stretching movements in every direction, to the violent jolting of my head to the side. The latter is impossible to do subtly but almost never happens when I’m out. It is quite common at home though, with my head moving as hard and fast to the side as possible, sometimes ten times in a few seconds. This can produce a temporary dizzy feeling and lead to a lot of headaches and your brain gets rattled around. Bizarrely, the violent neck twitch only happens to the right and I have no idea why. I suppose ‘bizarrely’ is a redundant word in this blog.
Although there are sometimes violent shoulder tics, slamming up into my head and basically beating me up, they are for the most part stretching-based twitches, usually combined with another tic, often vocal. The combining of tics is where it gets really exhausting, confusing and visually hilarious. At its worst I’ve had breathing issues, blinking, noises, violent neck twitching and lower back tics all at once. It still looks better than my dancing. Speaking of which, I’m unfortunately prone to all these movements when I’m by myself and there’s music on in a shop.
Internally it gets very complicated and even I’m not sure what I’m trying to do. The lungs in particular can sometimes feel uncomfortable, like they don’t have enough air, or I need to breath intensely to contract the muscle. Whatever it is, it’s unpleasant. My stomach doesn’t escape either, with physical twitches in my side and lower back often seeing me bent over sideways, contorted and straining. I’ve become very good at yoga. Stomach problems and nausea can be common for Tourette’s sufferers, almost as if every aspect of the body just overreacts to stimulus, particularly emotion, whether it’s positive or negative. However, the alternative of not feeling anything definitely isn’t preferable.
My left arm twitches a lot more than the right. I mean, why would there be order and balance in such a confusing condition? Most often it’s stretching my arm out, but often so intensely that it hurts the joints and strains muscles. After the hundredth time that day it can be pretty sore. It’s been worse when running, which I’ll come to in another blog but I may have accidentally groped someone during a crowded race. My hands are probably one of the most common tics, simply because it doesn’t need hiding or suppressing. Primarily it’s stretching the hand out or clenching it tight. The oddest twitch, which isn’t even a twitch, is when my hands just stop. I’ll want to pick something up, scratch my face or shave…my hand begins the movement, then just pauses for a second or two. I have no idea why and it often slows me down, although I can’t especially blame it for the delay in this blog.
Some physical movements can’t even be attached to a specific body part. Random stopping isn’t a twitch, it’s the opposite of a movement, my hand might just stop before it gets to my head to scratch, do my hair and so on. My whole body might just stop on occasion, not just in marathons. It often takes me a while to make my eyes look in a mirror, or they’ll look away from the page when I’m trying to read. It’s like having broken buttons on a Playstation controller. The character just keeps throwing his arms around and running into a wall and there’s nothing you can do to stop him.
Legs. I have two of them, so I can’t complain. They are usually alright, and before anyone asks, no the giant calves aren’t anything to do with Tourette’s. On occasion a tic will be kicking out my leg. This isn’t a convenient excuse for violence, more the feeling of stretching the ligaments out. When running there can be problems of legs twitching sideways and throwing me off balance but day to day it’s quite manageable. Finally, we land on our feet. Much like the hands the tics usually involve stretching and clenching together, but it’s even easier to hide in shoes so I doubt anyone has ever noticed.
The common trait amongst sufferers seems to be exhaustion and chronic fatigue. I’m no exception to that. Physically, there will be muscle strains, headaches, insomnia, nausea and from time to time, falling over. The impact is daily but there’s a limit to how much I can assess it as I simply can’t remember a time without it. It’s still a life I’m grateful for and would like to hang on to for quite some time. It’s given me plenty to write about and a source of endless comedy, while providing an empathy I may not have otherwise had. Some may still question my condition, seeing me on a good day and assuming it’s been exaggerated. While that can be frustrating and it’s important for people to understand the reality of so many disabilities, I’m happy I still get so many good days.