I started out researching this one thinking I was going to title it something like “I have Tourette’s, but not the fun one!”. Then the more I read about the disease, the more I realized how tiring and frustrating it is and there is nothing fun about it. Despite the opportunity for comedic relief.
Again- nope, not funny. I have been recently diagnosed with what is called “non-vocal Tourette’s”, which means instead of just blurting random words out, I contort my face or neck or arms a bit. It’s awful. Like keep me awake at night awful.
Mine is non-verbal, which I am grateful for. I worry enough that my tics are enough of a social distraction, I cannot imagine the embarrassment or disruption of instead of every time I go to crinkle my nose, I shout out the C-word. Awful as that would be, I really could have used that excuse with my former in-laws…
Tourette’s is a neurological disorder- not a disease, where the individual feels compulsions to experience a behavioral tic. There is no cure, only treatment. According to the National Institute of Neurological Disorders and Stroke;
Tics are classified as either simple or complex. Simple motor tics are sudden, brief, repetitive movements that involve a limited number of muscle groups. Some of the more common simple tics include eye blinking and other eye movements, facial grimacing, shoulder shrugging, and head or shoulder jerking. Simple vocalizations might include repetitive throat-clearing, sniffing, or grunting sounds.
Complex tics are distinct, coordinated patterns of movements involving several muscle groups. Complex motor tics might include facial grimacing combined with a head twist and a shoulder shrug. More complex vocal tics include words or phrases.
Mine are complex motor tics. I have multiple facial grimaces including my neck and arms. Reading into this, if I had vocal tics, every time I am compelled to contort my face, neck or arms I would end up grunting or blurting out potentially random words. I probably did the contortions about 20 times before writing this sentence, and likely another 10 or so while writing it.
That’s a whole lot of untimely outside voice events that I would be unable to control. And I am 100% powerless to control these. The longer I try to resist, the worse the compulsion becomes. Imagine holding your breath just a little too long, that urge you have to breathe as you try and hold on just another second- that’s kinda what it’s like trying to resist these urges. Except it happens dozens of times a minute to multiple parts of my body.
My eyes, my nose, my ears and my arms all screaming at me to breathe again.
This is typically something that presents in childhood and gradually disappears as you enter adulthood. Typically. I am 41 years old and I have learned that I am not typical. And that’s not an ego statement or a line to pick up girls. I describe my body as genuinely defective. I tell people all the time that I need to trade it in on warranty.
Not that I am complaining. Life happens- you deal with what you have and move on. I have severe depression but that doesn’t mean I mope around feeling sorry for myself because of all of the medical issues I have had in my life. I am a genuinely positive person- so much that I refused to believe I had depression for far too long because I was always able to see the brighter side of anything.
No matter how bad I had it, there is always someone who has it worse.
And to me, it wasn’t THAT bad. I had these tics as a kid, but I only remember them being in my face. I recall looking at my reflection in a school bus window while contorting my face and thinking that I looked like one of my favorite hockey players when I did it. I don’t remember when they went away- but at some point they did. I don’t remember they day they came back, but they did. Sometime before I met my first wife- meaning I can’t blame her for this one, unless I truly am clairvoyant and it was a warning of things to come.
My neurologist tells me that it’s rare for these to disappear and come back, and even rarer for them to move into other parts of the body. The first time I met her, it was like showing a child a toy that they had only heard about but had never actually seen in person; she was filled with glee as she watched me contort my face and neck. She was so enthralled with the fact that it also affected my ears and that I could do it on command that she would just randomly ask me if I could “do the ear thing again” because it’s so rare.
At that point I think I knew what circus freaks felt like.
Not necessarily offended by another person’s interest in my freaky ability, but not thrilled that it’s a part of me either. She asked me if It was ok if she included me in a paper she was writing and I think I shocked her when I told her that wasn’t the first time a doctor asked me that. Because my body is defective.
Years ago I worked in a fiberglass strand manufacturing facility. In simplistic terms, the process involved melting sand into molten glass, and then drawing that liquid glass through tiny holes cooling them down to become long strands of fiberglass string. Like any manufacturing process, there are waste pieces that end up accumulating on equipment that need to be washed off and removed. Well while one piece of equipment was being cleaned, I suffered what (of course) was described as an unbelievably freak accident.
I am working on the molten glass level, where through a hole in the floor the fiberglass string goes down to a machine that basically winds it onto a cardboard tube. While the machine was shut down and I was working above it, the operator was washing the machine when a small sliver of glass went up the hole, under the bottom of my safety glasses and I looked down at just the right moment for the sliver to lodge itself right dead center in my eyeball. At a perfect 90° angle.
While I was sitting in the ER waiting for the bevy of specialists to try to decide how best to remove this improbable projectile, one of the senior members of the hospital came to me asking if they could bring some specialized equipment in to take pictures of my eyeball and the sliver of glass before it was removed, so that they could include it in a textbook for learning purposes.
They considered it an event of unbelievable luck. I didn’t feel so lucky.
I suffered a couple of physical traumas to my head/neck that resulted in a ruptured disc in my neck. That disc ended up being pushed towards my spinal cord so much that it tore open the part around the spinal cord that protects it and seals it in spinal fluid.
When the neurologist did a spinal tap on me to check my spinal fluid pressure, he did not believe what he saw. Picture this; you are lying topless on one of those hard beds- like an x-ray bed in a super bright room with asylum white walls with basically a shot glass connected to a needle that is inside your spinal cord’s personal space. Now imagine that shot glass getting flicked. A couple times. Not only can you feel the flick on the glass, but the sensation of whatever is inside of you connected to that glass moving as well.
Apparently my spinal fluid pressure was so low, it should have been impossible. He apologized for “his mistake”, thinking he messed it up and told me he had to do it again. Same result- another couple taps of the shot glass. Then he explained to me that typical spinal fluid pressure is 8-15 mm Hg, and mine was 2. Not a clue what the mm Hg meant at the time, but it didn’t really matter.
Whatever the scale meant, the bottom end was 8 and I was 2.
“This is freaky cool! I have been doing this for 20 years and have NEVER seen anyone below 5- this shouldn’t be possible!” I remember him saying before he told me he was presenting at a symposium in Vancouver that weekend and asked if he could take pictures so he could include me in his presentation which he would later write a paper on.
I am really looking forward to the next time I meet someone and they find me familiar and ask if they know me from somewhere so I can say, “Yeah… I’ve been in a couple textbooks. No big deal…” It’s a ridiculous statement but my point is I don’t feel sorry for myself or try to treat my calamities as an opportunity for sympathy- I realize there are others that go through far worse than I have, so I simply keep it as a footnote in my life and move on.
I have always tried to look at things a little bit differently from everyone else, because I have always felt just a little bit different from everyone else. Be it medical issues or the fact that I was adopted, I have always identified with being slightly different. I remember thinking about what it meant to be famous when I was in elementary school.
There were actors and musicians and they were famous, sure- but one day they too will be forgotten. To be truly famous and not forgotten, I felt being in a textbook was the pinnacle because generations will learn about you. It didn’t matter what happened later in your life, if you were famous enough to be learned about then you were truly special.
I will likely never see any of the textbooks I am/will be in, but many will some day, and if that means I can help them help others to not go through the same pains I have- then I feel like maybe some of the pain is worth being part of the freak show. And that makes me feel useful.