E. Winter Tashlin

The Breaking Wave [PTAS]

Filed By E. Winter Tashlin | August 16, 2014 4:00 PM | comments

Filed in: Living
Tags: endurance, ocean, PTAS, social stigma, Tourette Syndrome, waves

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There's a wave looming over my head, and it's starting to crest. That it's a familiar wave does absolutely nothing to reduce my sense of impending dread.

Part of the nature of my neurological condition is that it waxes and wanes in intensity; doing so is in fact a criteria needed for diagnosis. Over the course of the last month, it has become clear that I'm heading into a significant waxing cycle, which rather than getting easier with age, has only grown more and more challenging.

Tourette falls into an interesting grey area in the scheme of disabilities. We're fortunate in that it's not fatal, degenerative, or, in most cases, mobility impairing. On the other hand, that means that while it can be both socially stigmatizing and physically painful, it doesn't engender the kinds of sympathy other conditions sometimes do.

Unfortunately how well the symptoms respond to medication is highly individualized, as are the side effects of said medication. I belong to the minority of the TS population that isn't overly responsive to the majority of meds used in the treatment of Tourette.

During waning periods I can often "pass" as someone who doesn't have the condition. Unless you're touching me you're unlikely to pick up on the nearly constant dystonic tics that contort my back and neck, and my vocal tics are less prominent during waning periods. Even the manifestations of the very rare coprolalia (the inaccurately described "swearing tics") takes a form in my case that most folk find pretty inoffensive. The most noticeable tic in those periods would probably be my grunting and odd breathing patterns, which tend only to manifest really strongly when I'm eating.

But as the symptoms move into a waxing period, my barking goes from very occasional to quite common, and that's when things start to go off the rails.

There's no good societal context for an adult who barks like a dog, and for whatever reason, people's natural inclination seems to be to assume that the guy in his mid-30s who is barking is doing so to ruin their day rather than that the situation could be medical in origin.

Moreover, there's no shortage of people who feel that accommodations for disabled people of any stripe are in some way detrimental to society, and in the case of a disruptive condition like mine, non-disabled people take the presence of my condition as a personal affront.

The fact that I'm writing as I sit on a train to Boston on a part-work/part-pleasure trip may have something to do with Tourette being the subject of today's PTAS. Public transit is a particular stressor of mine; there's nothing like being trapped in a hurtling steel tube, be it in the sky, on rails, or on the road, to lower people's threshold for aggravation and civility. (Witness the gentleman who just referred to me as "Rover" while instructing me to "keep it down.")

Moving into a waxing period also means "coming out" as someone with Tourette all over again, even to people who've known me for quite some time.

That coming out process is one of several points of commonality between my experiences as someone with Tourette and someone who is part of the LGBT community. I've been explaining that I have Tourette, most often in the context of justifying my existence and right to be in a space, for twenty years and short of a major medical breakthrough, I'll be doing it for the next twenty as well.

Like an injury that refuses to scar over, "coming out" is often as anxiety-inducing today as it was in 1994. This type of "coming out" most often happens as response to a verbally or physically aggressive confrontation and only makes it more unpleasant.

So that's the wave that is looming over my head, which takes us neatly to today's photo. I took that shot about one hundred feet off the beach in water up to my chest while taking my DiCAPac waterproof camera case out for its first spin. In the context of today's post, here's what's important to know: that wave didn't break over my head. I jumped at the right moment, and rode over the crest, landing back on the sand on my feet.

It took some time to figure out just how to juggle two thousand dollars' worth of camera equipment strapped to my left wrist, the push and pull of the water, the breaking waves, and the actual process of trying to take photos amidst the waves. But I got it down with a bit of practice.

I've had a lot of practice at figuring out how to ride out the impact of the Tourette, and I'll get the rhythm down once again soon enough.


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