Listen to the Sickboy podcast here
Imagine being compelled to do or say the worst possible thing at the worst possible time. This could include shouting the “N word” in your class at school, farting on a date, or yelling “Bomb!” in an airport. It might also include repeatedly banging an injury over and over again or obsessively twisting/cracking your neck (causing pain) well past the point of crying.
This is Tourette syndrome – a neurological auto-inhibitory dysfunction of the brain. It’s a disorder that includes impulsive thoughts and movements that will derail any normally accepted interaction or behaviour you may intend for yourself.
Tourette syndrome itself makes me tic. Tics are repetitive body movements and my most common tics are flipping my fingers and wrists, a slight head jerk, and a ton of unnecessary sniffing. I also have a little bounce in my step. My tics are manageable now because I have years of experience redirecting them to less noticeable body movements, or repressing them, and my impulse control is well developed at my age. It wasn’t always this easy for me though. In high school, however, I ticced so much that I almost fell off my chair a few times. For my stepson, Nate, a 15-year-old boy, impulse control is yet to be mastered. He called his mother “Fucking Bitch Asshole” for about 5 years. Most times he felt bad, but not always. He licked everything you can imagine because his disorder drove him to do it. His manifestations of Tourette are quite spectacular. He would be running across the street, and be forced to lick the bottom of his shoe without losing a step. It was a tic. He has banged, bruised and twitched himself to the doctor’s office many times.
TV Tourette…. A phenomenon most people are well aware of is often the butt of jokes. It’s the “Fucking Bitch Asshole” awkward moment that TV shows follow-up with a laugh track. The uncontrollable swearing that is the hallmark of Tourette is called coprolalia. My stepson and I have that too. Only about 10% of people with Tourette Syndrome have coprolalia. In our house, it can be quite laughable. Our kitchen table at dinnertime can be a barrage of Tourettic coprolalia bouncing from one end to the other in quite a laughable manner. Its not like we could possibly send everyone to the corner for swearing – we would all starve. We have to laugh. But coprolalia is tough too. I’m a professional and I can’t just let things slip out on the school playground or in my office. I have to be on top of it. For Nate, it’s more complicated. Imagine telling your kid’s grade 3 teacher he will most definitely say “Lick my balls”, over and over and call her “bitch”. Yah, it sounds kind of funny, but it’s not when you really think of the implications for daily life. My son’s Tourette-related swearing presents a difficult barrier to fostering relationships at school and elsewhere. It’s a real-life challenge.
Another fact about Tourette Syndrome that you don’t learn from mainstream media is that the disorder almost always occurs with a handful of other disorders (called comorbid disorders). Obsessive-Compulsive Disorder (OCD) and ADHD are the most common, followed by Oppositional Defiance Disorder (ODD) and Learning Disorders – and we have them all. Everyone these days know about ADHD…. It’s the “I can’t stop moving”, “I can’t focus” disorder that can result in abysmally poor impulse control. When this disorder is combined with deficits in inhibition caused by Tourettes, self-control becomes nearly impossible.
OCD is probably the darkest of the comorbidities of Tourette syndrome and one of the most common with Tourette Syndrome. Popular culture often represents OCD as a person who is very neat, perhaps “too neat” and likes things “perfect”. Although these may be traits of the disorder, it’s only the tip of the iceberg. OCD can also include obsessive thoughts that are gruesome or evoke crippling anxiety. These thoughts are constant, sometimes lasting for years. Sometimes they prevent the sufferer from moving forward in their daily lives. They can be truly dark, and even evil. An undiagnosed OCD sufferer is driven to think that they must be an evil person for having such evil thoughts, when the opposite is true. Such thoughts are distressing simply because you know they are wrong and you do not enjoy them. For example, at the age of 4 my stepson Nate saw a fish being gutted and prepared for cooking. Later that day he was inconsolable. Only after lengthy investigation was his mother able to discover that Nate could not stop picturing himself using a knife to “gut” his mother in the same way he saw the fish being cleaned earlier that day. That particular thought/vision remained with Nate for about 4 years and was his living hell. On the advice of his psychiatrist, Nate and his mom learned to treat it for what it was – an intrusive thought and not something he was going to act on. The fact that it was distressing was an indication that he knew it was wrong, and it was not something he would act out in real-life.
There are medications for each of these disorders when they occur alone. Physical tics, OCD and ADHD can all be treated (to a degree) with medication but once again, Tourette presents a new problem. Some medications for ADHD and OCD can cause or increase physical tics. Other medications for ADHD can not only worsen OCD symptoms but they can cause or worsen episodes of rage (another common disorder among people with Tourette).
Being able to find humour in Tourette Syndrome requires a special perspective. It certainly isn’t funny to the person who is struggling to find peace. The constant obstacles that these mental and physical assaults present often force sufferers (of all ages) to a dark place, where there is only exhaustion and no hope. Escaping this place takes years of medical and emotional support. It doesn’t just go away.
I’m not your typical “Touretter”. I’ve taken coping with these disorders to a new level. Not only have I successfully navigated the symptoms of my disorder(s) and the “darkness” they can bring, I have developed strategies that I share to help other sufferers. I have even learned to see the gifts that these disorders can bring. Along with my wife and children, as a collective, we have Tourette Syndrome, ADHD, OCD, Oppositional Defiance (ODD), Learning Disorders and autism spectrum disorder. It’s a pretty interesting family. We may not be like most families, but that doesn’t keep us from being anything but normal. We’ve discovered that normal is in the eye of the beholder. Building on this, my wife and I have created a website to help others find solutions and draw upon the gifts that neurological disorders bring. Our website is neurologicallygifted.com and it’s full of info and advice for individuals, families and educators.
Having learned to successfully manage my Tourette symptoms, I’ve learned to embrace them rather than fight them. I’m able to laugh at them and the “situations” they can create. It has shaped me into a unique and resilient character who is stronger for surviving the continued, daily physical and mental assault of my disorders.