Originally published on Storehouse May 21, 2015
I try to run at least 20km (12.4 miles) a week. That’s usually split between two 5km runs (3.1 miles) and one 10km run on the weekend. So a 5km run for Tourette Syndrome awareness shouldn’t have been a big deal. Except it was. Not because of the run itself, but what it meant to me. My run started at Dilboy Stadium in Somerville, MA. The sky was slightly overcast and the wind was slightly chilly. But I’ve read that all the energy runners burn makes it feel like it’s twenty degrees warmer than it actually is. So by that measure, today was beautiful, a perfect day to get out and get moving.
I had originally planned to do my Tourette Syndrome run on May 1st, but I was traveling for work. And then I was waiting for my official Tourette Syndrome Association team shirt. And then a bunch of other excuses. Oh, I’ve ran plenty in the meantime — I’m training for a half marathon in the fall. But like I said, this run was special. It needed to be a perfect day, and a perfect run.
I used to pass this little trail on my runs and wonder where it lead to. It’s the start of a beautiful path called the Alewife Brook Greenway and it’s where I do most of my running these days. Like the name implies, it runs along a tranquil brook that branches off the Mystic River in Medford.
As you can see, the views are gorgeous. It’s my escape from all the cars, noise, and stress that make up urban life.
It took me twenty-three years and twenty minutes to be diagnosed.
A difficult childhood
It took me twenty-three years and twenty minutes to be diagnosed with Tourette Syndrome. Twenty-three years because even though I started showing symptoms around the age of four, my parents never took me to a doctor. I was told to just stop it. Those weird noises I made? Just stop making them. Those wild movements where I’d shake my head wildly until I had a headache, or slam my knees together until they were bruised? Those were just “nervous habits” that I could stop if I really wanted to.
I was annoying. I was an embarrassment.
“People were LOOKING AT US.”
“Do you want people to think you’re RETARDED?”
Obviously I did those things because I wanted to. Or because I spent too much time in front of the TV. Or on my computer. Or the contrast on my monitor was too high. Or I ate too much candy, drank too much soda. Or…because I had a neurological condition? No, that was never a possibility
My folks would ask me why I did it and I said I didn’t know. Well, they said, if I didn’t know why I did it then it should be no problem to stop. Growing up with reasoning like that, it’s amazing I got an “A” in that college logic course.
I’m not making up that part about the contrast on my monitor, by the way. I spent a week playing video games I could barely see because my mom was convinced that was causing my tics.
I spent hours in college combing the early world wide web for info on “nervous habits”, which lead me to the word “tics”, which lead me to people describing exactly what I was doing and exactly what it feels like.
Imagine an itch that just won’t go away, no matter how hard you scratch. Picture the feeling growing in intensity until all you can think of is that itch and making it go away. Then, imagine knowing the only way you can find relief is to shake your head, tap your foot, say “buffalo”, or maybe all of the above in that particular order and with just the right length pause in between. That’s life with Tourette Syndrome.
Imagine knowing the only way you can find relief is to shake your head, tap your foot, say “buffalo”, or maybe all of the above.
I got my first “grown up” job when I was twenty-two. After the probationary period all new employees went through, I got my own health insurance and the freedom to see a doctor whenever I wanted. I told the doc I thought I had Tourette Syndrome, gave him my life’s story, answered a couple questions, and got my diagnosis. It took less than twenty minutes to finally get closure on a life-long mystery. Twenty minutes nobody could spare up to that point.
Life’s too short to take all the joy out of it just to make other people comfortable.
A lot of people with Tourette Syndrome report that their symptoms wane as they get older. One theory is that our brains adapt to all the weird signals and misfires going on in our nervous systems. Or it might just be that we develop coping mechanisms.
I picture a pendulum running from my heart to somewhere underground. It’s on a metal chain, and all the energy that my body wants to put into ticcing gets sent down that chain like electricity and absorbed into the earth. It’s how I get through life when my job has me on video conferences all day and my social calendar is surprisingly busy. Constantly meditating on that pendulum and staying mindful of how my body moves also gives me the appearance of being “intense” which sometimes comes in handy. Nobody accuses me of being a slacker, that’s for sure.
I’ve been with my wife for almost sixteen years and I don’t think she’s ever seen what my tics are like at their worst. But when nobody is looking, I get to let my guard down and just do what my body tells me to do. It probably sounds frightening and stressful, but it’s actually kind of relaxing not to care anymore.
The doctor who diagnosed me prescribed Haldol to take the edge off my tics. I didn’t like it. Made me feel like a robot. Screw that. Life’s too short to take all the joy out of it just to make other people comfortable.
Healthy diet? Maybe tomorrow.
I love the Alewife Brook Greenway because it’s this thin slice of nature running through a fairly urban area. At the opposite end from where I started today, it meets with the Minuteman Trail, a “rails to trails” project where I continue my longer runs.
Today’s run was different, so I turned down a side street that crossed the trail and ran through downtown Arlington. There weren’t a lot of people out on the sidewalks today, but I guess that’s normal for a weekday. I’m kind of glad. There’s nothing worse than running past someone carrying a stack of pizzas and getting distracted from your health goals, and that happens to me a lot in Arlington. There’s so much good food in their downtown area.
The main street running through downtown Arlington crosses the Alewife Brook Greenway, so I got back to my beloved trail in less than a kilometer. I finished my run in 29:20 and walked the rest of the way home. It was such a beautiful day, I spent the next hour or so on the front porch catching up on Twitter and enjoying the breeze as I cooled off.
I want a cure so nobody ever needs to go through life like this again.
I run for a better future.
This is the second year in a row there’s been a “virtual” run to coincide with the Tourette Syndrome Association’s annual charity run in New York. I run it to show my support and to raise funds for Tourette Syndrome research and education. I can only imagine how different my life would have been if a teacher or other adult in my early life knew what was going on with me, let my parents know, and found ways to make school a more hospitable place for me to learn & grow.
I want every child growing up with this condition to know they’re not alone. I want resources available to parents, teachers, and other authority figures. And most of all, I want a cure so nobody ever needs to go through life like this again.
I’d like to thank the Tourette Syndrome Association for holding the virtual run again this year. And extra huge thanks to everyone who donated through my fundraising page this year!
Thanks for your support.