Wednesday, March 12, 2014

Out of the Closet

Eye rolls and grunting. Occasionally, a feeling hits me; I'm going to vomit. Bent over, retching, dry-heaving, gagging, but I never throw up. “Try to give yourself a break.” I hear this from my wife, Susan, every time I swing negative and start railing on my Tourette's. I get frustrated, angry, and then I get down.

Tourette's Syndrome is a 'childhood disease.' While nothing is correct about this statement – it is not a disease, but a disorder, and it typically shows up in childhood but can be a lifelong challenge – this is what I am told time and again as I try to look for information on the Internet. My doctor tells me to stop looking at "Yahoo Answers" and start reading some serious literature, but the only time I want to research Tourette’s is late at night, after I've had a few drinks, feeling sorry for myself.

This problem, it won't get better. In fact right now, it's getting worse. With me for life. I'm a fixer. When things are broken, I correct them, make them right. This is what has made me successful in my career. And when I can't fix something, it makes me feel helpless, pissed off.

In the two years since my Tourette's was diagnosed, I've been hard on myself, calling myself a freak. Before my Tourette’s diagnosis, I believed that I had a physiological problem with my eyes. Something that can be corrected. The right doctor, the right medicine would do the trick. That I had spent 15 years trying to find that doctor, that medicine didn't matter. It was still something that I could fix. After a family friend suggested Tourette's, I saw a neurologist. He immediately agreed. A diagnosis means a cure, right? Not with Tourette's. There isn't even a test to verify. Just a check-list of symptoms. Very sloppy, very vague.

You would think a diagnosis would at least give me some peace. In truth, it often makes me feel worse. Such a misunderstood condition. Adults my age learned about Tourette's through TV shows like Quincy. Swearing in the movie theater, that sort of thing. That's not my self-image. Not how I want to be known. I know that coming out of the closet, going public, is opening myself up to ridicule and attacks. It is easy to taunt something you don't understand, something different.

I told my brothers. Tourette's is hereditary. I wanted them to be aware in case their kids show any symptoms. My sister in law's reaction: "Oh, right, we know. Our son was diagnosed years ago. We use you as a positive role model for him." My friend Fred, a nurse: "Oh sure, I always assumed you had Tourette's." Grrrr. The whole world knows, but me.

As a kid I had tics. Not a lot of them, and not too disruptive. A low, purring sound in the back of my throat. It would rise in volume and pitch into a quick shriek. I did this at home, not in public. Not around friends, not around strangers. And a side lurch, as if my muscles were sore, needing a quick stretch. Very quick, very jerky. Tics are not controllable. Like holding your breath, like suppressing a sneeze. You can only put them off for so long. The longer you go, the worse it gets.

I don't remember these tics going away, but by late high school, they were gone. And forgotten. My tics weren't really a problem as a kid. Because they were mostly confined to my home, they didn't impact my relationships and stature in school and in the neighborhood. When they returned as an adult, they were much more disruptive.

In my early-thirties, I had a bad bicycle accident. Lots of injuries, serious head trauma. A long recovery, a couple of seizures, PTSD, depression. About a year later, my eyes began to bother me. They felt swollen. The only thing that would relieve the pressure was quick, straining, eye rolling movements. Not much fun to watch. Few people commented, but many were uncomfortable. It's hard not to stare at oddity so we all try to look away. And when it is someone's eyes, it creates distance. It's difficult to be close to someone without eye contact. And my relationships began to suffer. I began to feel isolated.

Dozens of ophthalmologist appointments, tests and treatments, medications for dry-eyes, even a biopsy of my eyeball. Nothing conclusive, nothing worked. A few years ago, I realized that when I was alone, reading late at night, out on a run or a bike ride, in my office, I would grunt. A deep, quick trill in the back of my throat, at the base of my sinuses. I mentioned it to Susan, she mentioned it to a friend. And that friend said Tourette's. 49 years old, and I got my diagnosis.

I'm not sure why it took so long to figure this out. The signs and symptoms were apparent for most of my life. I feel let down by the doctors I visited. Treating symptoms, not looking for a cause. But recently, my opinion of myself – myself with Tourette's – is evolving. I'm becoming more comfortable with the diagnosis. There's no cure, but I'm not helpless. Tics can be reduced with lifestyle changes. With lower stress; with therapy intervention; with less caffeine (maybe, no clear data to support this, but it seems that way to me).

Possibly my comfort is simply relief that my tics have changed. My eye-rolling has subsided greatly. But my grunting has increased dramatically. It is a welcome switch. The dry-heave thing is pretty annoying, but it isn't that frequent, and almost always when I'm alone. I'm growing closer to friends, making new friends. Is it the lack of eye-tics, improved self-esteem? Make no mistake; I'm a twitchy dude, constantly punching at my thighs, scraping my teeth together, clicking pens, coughing during concerts. Each of these, like an itch I need to scratch.

For a few months, I've been toying with the notion of coming out of the closet. Telling my world about Tourette's. Because I live in a small-town, everyone who knows me will eventually hear about it. When people gossip, I lose control of the message. Myths and misconceptions will perpetuate. Some will make jokes, some of the jokes will be mean. Many people won't care, given my prior experiences, some will already know.

Part of me thinks I have a responsibility to share this information. Let people see that folks with Tourette's are normal people. I’m tired of keeping a secret from my friends. But part of me wonders why I need to tell anyone at all. I’ve had an elevated bilirubin count (Gilbert's Syndrome) my whole life and I never talk about that either. What makes Tourette's any different. But Tourette's is different – at least for me. It has an impact on my actions and interactions, it colors my personality. It is part of who I am.

Everyone has their “thing”. Insecurity, addictions, depression, anger, tumors, weight problems, the list is potentially endless. Tourette’s is my thing – at least one of them. When I look at my problems in comparison to others’, I sometimes feel that I’m getting off easy. Now, I have to hold onto that feeling. Especially if or when I let the world know.

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