By Ed Cooney
I constantly perform repetitive tasks at work, which is both good and bad. It’s bad because boredom is a real thing that leads to mistakes, but it’s a good thing because I can let my mind wander. I tweeted a while ago that being an adult with Tourette’s sometimes makes me feel like my life is a series of workarounds. In this case, my workaround is that I’ve found a job that I’m good at, that pays decently, and that I can do while not having to place shackles on my mind that TS/ADD would eventually shake off anyway. This is all just to give context to the fact that while at work this afternoon, I had a random thought that got me thinking further. “We turn our pasts into graveyards,” I thought to myself. I think I originally thought of it in the context of, “Hey, this would be a cool line for someone to put in a book or a movie!” Then I got to some deeper consideration (as I was taping up boxes full of industrial supplies and dancing badly to the music in my earbuds), and I think I was on to something.
I’ve been struggling with my TS a lot the last month or so. I have a new tic where I click my teeth together that’s been really persistent and hard to deal with. It’s painful and distracting, and each tic is followed by a split second of anxiety where I wait to feel the sharp pain of a newly cracked tooth (so far so good, though). I’ve been seeing a psychologist for the last month and I have an appointment with a psychiatrist in early July to try and find a medical solution to manage my depression and what I suspect is ADD. I’m actually going through the diagnostic process for Adult ADD now, and it’s surprisingly involved. I know without a doubt that a lot of this is connected to my TS, and I’ve seen information online (which I of course can’t find as I write this) indicating a fairly common relationship between Tourette’s and depression. If you’re reading this site, you’re probably also aware of the frequency of TS patients being diagnosed with ADD/ADHD as well. These are tough to deal with on top of the already frustrating symptoms of TS.
Bear with me.
I wasn’t diagnosed with Tourette Syndrome until I was 37, just over a year and a half ago. I’ve been obviously symptomatic since I was eight or so. My parents asked our pediatrician what my tics were, and she told us that my “nervous habit” would go away on its own eventually. That obviously has not come to pass. Over the years, my folks, who had a lot on their plates, told me I could control my tics if I wanted to, that I just needed to try harder and get myself under control, and that people would think I was weird (they were right on that last count). None of this was helpful, and I just felt that I was failing at being normal for the better part of the next 30 years. After being diagnosed, I turned around in my mind’s eye and started looking back at my life in the context of TS. My initial reaction was that I was happy I’d made it this far without a diagnosis because it made me feel like I knew I could survive and thrive without medication and other intervention, and I was proud of that. I’ve recently edited that, though, to remove “thrive” from the statement. I have good relationships, an amazing wife, an adorable son, and I’ve never had trouble holding down a job because of my symptoms. I think, though, that living all my life knowing something was different about me but always feeling ashamed of it has left me a little stunted, a little less open, and a little less sure of myself. It turns out, at least in my case, that you never really get over a lifetime of feeling like the weird kid.
Landing the plane soon, I promise.
Lately, I’ve turned my past into a graveyard. I’ve been thinking a lot about how different my life MIGHT have been had my parents more aggressively sought out a diagnosis for me. I wonder how differently I’d have felt about myself if I wasn’t told to try and hide my tics from people. I think as a kid, it was hard for me to separate the tics from my personality and my self-confidence, and I think maybe that all got caught in the net I cast to control my TS symptoms. I hear a lot that it’d be hard for a lot of Touretters to get rid of their TS because it’s so inextricably intertwined with their sense of self. That’s an awesome, baller mindset to have, but it’s a scary reality to live with when I look back in my childhood to realize that I was taught that this condition, which as I said is inextricably intertwined with my sense of self, was something to be hidden and ashamed of. If the TS was to be hidden, then so was the rest of me, and so it went. But that’s my problem, and I’m addressing it, finally.
I titled this post “To the Parents” for a reason. If you’re the parent of a kid with Tourette Syndrome and you’re here on this website, I say a teary-eyed “thank you”. Thank you for caring enough to search out resources to help you and your family understand and deal with you kid's diagnosis. If you’re teaching him to love himself for all the things he is, thank you. If you’re educating her and talking to her teachers and other school staff so they understand her symptoms and her needs, thank you. This sounds silly, but you have no idea how much it means to me to see so many parents in this community so involved in fighting to give their TS kids the best possible of all lives, day in and day out. I know how it feels to be left in the lurch with TS through childhood and high school and young adulthood and early parenthood, and it legit warms my heart to see all of you putting so much of yourselves into advocating for your kids. So if you’re the parent of a TS kid and you’re reading this entry on a day when you just feel like you’ve had enough, please don’t give up. I don’t have a kid with Tourette’s (I mean I might, but he’s not even two yet…) and I can only imagine the challenges that come with it, but please know that you are an amazing mom/dad and your kid is incredibly lucky to have a warrior like you on his side. The hard work you’ve put in today and the hard work you’ll put in tomorrow will pay off in the long run when your kid is a 38 year old with a family of her own. She’ll get a minute at work where she gets to let her mind wander, and she’ll be hit with a random thought and she’ll think to herself, “Hey, this would a cool line for someone to put in a book or a movie!” Thanks to you, that thought will be “We all turn our pasts into gardens.”
Ed Cooney is a husband and father living just outside Philadelphia. Read more of his writing at https://edstourettes.blogspot.com.