– Or: How I learned to love being the Tourettes jerk who jerks
Imagine for a moment if you will – or even if you won’t – how a conversation could go bizarrely sideways if someone you’re conversing with makes a statement requiring affirmation and instead you viciously shake your head from side to side. As if to say “ARE YOU OUT OF YOUR EVER LOVING MIND?” Or the response was a grunt that resembles the bark of a dog. And not in the good Ozzy Osbourne kind of way. Or, in rare instance, uncontrollable cursing. It’s not “Being Andrew Dice Clay,” it’s having Tourettes.
None of that is happening on purpose. It’s an impulse triggered by neurons in the brain to do something involuntary that generally has nothing to do with a situation at hand. And in this specific instance, this is because Tourette Syndrome is a pain in butt. And neck. Also head. And potentially everywhere else.
In a bid to prove that I am not – in fact- even the slightest bit amusing, this week I’m going to dive into the topic of Tourette Syndrome and the joy and celebration it brings to existence.
“But wait, George!” you are quick to cry out. “You make it sounds like Tourette’s is this terrible thing that destroys your body and relationships and prevents you from making friends and destroying your enemies.” This is also correct.
I wouldn’t change anything about it*. It has shaped the person I am – for good or for ill – and continues to have an impact on capabilities that I require for daily function. It also has an effect of interfering with aspects of life that are sometimes inconvenient but REALLY good on the improv skills.
Let’s wade in.
* except for maybe the minor parts there it destroys the body. that part i could live without. just saying.
Tourettes? That sounds like a French Word. Or is it a FREEDOM WORD?
This section relies heavily on data available on the Tourette Syndrome Association of America web site. The TSA has been an evolving and informative resource for decades on the subject of what the devil this thing is, why it exists, and ways in which to combat the overall challenges it presents.
Tourettes is categorized as being part of the spectrum of Tic Disorders. Its rarity is quite inflated: it is estimated that 1 in every 160 children in the US has Tourettes, and 1 in every 100 has “TS” or another tic disorder. It is differentiated as having a requisite number of both physical and “vocal” tics. I’ll describe some of the more common occurrences as well as some that are less common but very real in my own sphere of life. It’s my blog and I’ll write if I want to.
The physical tics can be as simple as eye and nose twitches, body bump evening up, nostril flaring, muscle contractions, and so forth. All very deliberate, all compulsive and involuntary.
The vocal tics are generally described as vocalized sounds. Grunts, barks, clicks, throat clearing, loud inhalations, use of words out of place, and even use of words that are completely inappropriate.
The swear jar theorem
In those moments where Tourettes individuals are portrayed in movies or television – or comedy – it is generally under the vein of someone swearing uncontrollably. The reality is that roughly 10% of people with diagnosed Tourettes will curse in a fashion that is not of their own volition. As such, this is considered to be The Prototypical Tourettes Symptom. So say we all. Here are a couple of interesting points about that though that I’m sharing because, again, it’s my blog and I’ll write if I want to (o/` you would write too if it happened to you o/` ):
- Uncontrollable swearing is only 10% of all diagnosed Tourettes patients (i said that already. repetition is not a tourettes symptom, that’s just me being repetitive)
- Loud voracious swearing is considered extremely socially unacceptable
- Jumping onto The YouTube, there are a variety of people with Tourettes on camera and being their best selves from all over the world. Of the people I have seen, all their cursings are localized. Regional curse words, not just the ones more recognized internationally. Lewis Qball is an incredible example of this in that he repeats “Bollocks” and “Wankers” quite a bit because locally those are naughty words. Internationally? Not as much.
- All Tourette Tics are “socially awkward.” Every single last one of them. Cursing out of place (or in place) is a challenge, but so are abnormal movements.
For the 10% of those with Tourettes who do find themselves unable to control cursing, the challenge then becomes navigating through a society that would otherwise really frown on that behavior. Moreso than most of the physical tics and other sounds that crop up.
For the other 90% like me – I only curse controllably – there are still plenty of opportunities to be socially backwards and inappropriate.
Getting your freak on in that not-great way
So think about it. Being about 7 or 8 years old in the 1980s and suddenly having no control over “a bunch of bad habits.” Constant throat clearing is driving your babysitter bonkers. Jerking your head forward and backward looks really bonkers. Making your face and nose straighten out unnaturally is … er … unnatural. And that’s just Tuesday.
Having TS in the 80s was a one-way ticket to label-town. Freak was the most common. It makes sense. If the teachers – or even my own family – couldn’t figure out what it is, why would other kids be able to parse it?
Children seem to be kinder now than they once were. That’s not to say they’re all sunshine and lollipops because, well, they’re kids. One of the things that makes it easier today is teacher awareness of things like this. In the 1980s, most teachers didn’t know what “A Tourettes” was. As a result, it became a distraction without a name or a reason. Distractions without names or reasons are generally unwelcome in the 1980s teaching environment and are dealt with accordingly.
Side note: Most of my observations on today’s classroom are based on what I’ve seen in person. At least in my region of the state. Children with challenges are handled with compassion and understanding. Almost get a bit dusty thinking about and how much has seemingly changed. I suspect this isn’t the case nationwide but it gives me hope for a brighter future for so many kids.
Out of the gifted program, into the dungeon
Weird, huh? But yes. Some comorbidities of Tourettes can be the presence of ADHD and OCD. As a child, that precise combination gave educators the impression that I was more intelligent than I am. Spent a great summer in an advanced learning program and it was fun! That was also before the physical tics -really- ramped up. Once that took place, stuff went sideways.
I don’t think I was supposed to see it but I distinctly remember upside-down reading the document on my principal’s office desk that labeled me as “Severely Mentally Damaged.” That label carried through the rest of my public school life and I was put into special needs classrooms in accordance. The best part about it though? Safe zone. The “Resource Room” had the one teacher in a building who was trained to work with kids who had special needs. The result? I got to play math games on computers and enjoy downtime. It was glorious! It was a blessing and a curse though, in that it was another thing that set me apart.
I’m going to gloss over the bullying that came with it other than to mention that it was there. It’s not worth dwelling on.
“She can’t take much more o’ this, Captain!”
The part of my body that has taken the most abuse and overuse over the years is the neck. Head jerks forward and backward. Side to side. Headaches on occasion when they get really bad, but by and large it’s been the neck.
One of the components of my Tourettes experience is that if a tic can cause pain, then it really escalates. A head jerk causing a headache? TEN MILLION HEAD JERKS LATER it’s time for Advil. Once the headache is gone, the tics subside somewhat. Pain-inducement is really bizarre but another fun day at the office.
But back to the neck. I’ve already had one cervical spine disc replaced between C5-C6 a few years ago. It’s this really cool-looking purple titanium smore! I have hardware and I’m .03% on my way to becoming a Terminator. Hopefully the good kind. With muscles and cool shades. But no motorcycle, those things are scary.
I actually thought that a disc replacement might be the kind of thing that caused the neck tics to back off. Yes, I know. I’m hilarious.
A couple MRIs later as of last week, pretty sure there’s more on the horizon. To be continued on that front. And the neck abuse continues.
Wait, so why wouldn’t I change a thing? Tourettes sounds like it sucks.
Tourettes, OCD, and ADHD are, at their core, unpleasant. The inability to focus long enough to straighten up a kitchen while simultaneously needing the forks lined up just so in the drawer is maddening. That precise combination of what I have has made me into the person that I am today. The coping mechanism that got kids to stop trying to destroy me more than my body was already trying was humor. It started small. Memorizing comedy routines by Robin Williams and Bill Cosby*. Learning how to adapt humor to any situation. Self-deprecating jokes made other kids laugh and that was a defense mechanism and it worked.
That variety of humor adaptability has played into every single day of my life since then. You know the greatest ice breaker ever when meeting someone for the first time? “Just to address the elephant in the room right out of the gate, if I violently shake my head at everything you say, I’m not vigorously saying NO to anything. I have Tourettes and its mission is to make everything awkward and you and I are going to tell it to sod right off.”
(if we ever get in a zoom together for the first time, i promise you we’re going to have a conversation just like that. it’s almost rote)
That bit about memorizing comedy routines? That applies to music too. And most things if repeated enough. That is a massive gift and I am so grateful for it. I don’t think I would have that gift if not for the unique combination of quirks.
* yes, imagine learning a bunch of comedy routines by someone who it turns out was probably not who they portrayed themselves to be. now imagine having that entire library in your head with instant recall for the rest of your life. whoops!
Bringing it up a notch
Why am I relating this really depressing story? Because that’s the kind of person I am today.
No, but really. I’m relating the story in this fashion because I feel strongly that it’s important to know what’s going on in the head of someone who has this. Not every kid gets through it unscathed. People with Tourette’s disorder or chronic tic disorder are over four times more likely to die by suicide than the general population. Not every kid gets out of this alive. Many kids transition to adulthood and the tics go into remission. Or not, in my case. And others.
Given the percentage of kids who likely have Tourettes or a tic disorder, there is a strong chance that there is a child out there who desperately needs help. Or an ear. Or compassion. Something to help them to know that it’s really going to be ok and how to make it more ok than it is now.
I was extremely lucky by having a mother who leveraged that level of compassion. She was able to get me in to professional help from time to time to help cope with what was going on internally and externally. Strong faith and counseling were key components to still being here today.
Not every child has the luxury of parents who get it. Not every child with uncontrollable tics has that support system in place.
So what can we do?
I’m not entirely sure, to be honest. It’s something I’d like to look into somehow. Be a voice to help encourage kids who are struggling with coming to terms with this really bizarre thing. Share with them how I finally figure out how to blend into school life in hopes that it will help them.
The TSA has a variety of support options for getting involved that I don’t recall seeing before. That seems like a good thing to explore maybe when pandemic thing settle down and more in-person stuff is viable.
This stream of consciousness has been brought to you by neck pain, headaches, blurry vision, and severe optimistic outlook. I still have hangups about meeting people and the first impression it gives. It can be crippling at times but I’m old enough now to know that there are ways to get around it. It might not be a unique value proposition by any stretch of the word, but it is definitely unique. I am who I am today because of it. Someone out there is probably struggling to come to those types of terms and it’s really difficult. If you happen to be one of the six people reading this and you know someone who could potentially benefit from talking to someone who is going through it, maybe let’s figure out how to connect.
Until next week!
-= george =-