After spending the past week in fabulous San Francisco CA, I’m winging my way across the Rocky Mountains returning to dreary Portland Maine. The company I work for, Odyssey Events LLC, just hosted their first West Coast sex & BDSM conference, after a decade of only doing events in Maryland and DC. Making it all happen took months of hard work, but the event was a spectacular success, exceeding the expectations of everyone who had a hand in its planning, and execution.
In addition to being the event’s national talent coordinator, scheduling coordinator, and production assistant, I kept busy through the weekend: teaching three classes, co-leading opening ritual, and acting as a secondary event photographer.
I should have had an awesome, if busy time, reveling in the realization of a difficult vision. But on top of all of those things, I also spent the entire event desperately working to suppress the symptoms of my Tourette Syndrome.
For those of you who aren’t familiar with the condition, or whose knowledge doesn’t extend past corpolalia (the relatively uncommon “swearing tics” that the media is so very fond of), allow me a brief moment to explain:
Tourette is a neurological condition that causes repeated involuntary movements and sounds, or “tics.” These can include sniffing, grunting, throat clearing, head jerking, facial grimacing, or just about anything else you can imagine. Both motor and vocal tics must be present (or have been within one year) for a diagnosis to be made, and the symptoms wax and wane over time without a great deal of rhyme or reason. Over time, new tics can develop and old tics can fade away. I have a host of symptoms, from the largely unnoticeable, such as painful dystonic back and neck tics, to more obvious tics like head jerking and the barking from whence my website and blog take their names.
Just as symptoms vary from person to person and moment to moment, so does a limited ability to suppress those tics for periods of time. The problem with suppressing is that it often takes a great deal of mental energy, making it difficult to maintain focus on other things. Suppressing like this also typically makes the tics far worse later, once someone has passed the limits of how much they can suppress, or are in a situation where they can stop doing so. In my case, I can manage my vocal tics for short periods of time, but doing so makes my painful back tics worse, tires me out faster, and means that I’m constantly devoting a considerable amount of focus and attention simply on the effort of not vocally ticcing.
Why then make the effort? Put simply, I hate being invisible.
I often say, and only half in jest, that growing up with Tourette Syndrome taught me how to be a social entity. After all, I’ll point out, it’s hard to be a wallflower when you’re standing in the corner barking like a small terrier.
But in reality, particularly in sexually charged or queer environments, the rather noticeable consequences of my atypical neurological wiring has the effect of rendering me virtually invisible as a person possessed of sexual agency in the minds of the people around me.
This is hardly unique to my experience as a Touretter of course. Many people who present outwardly as having a disability find that they are automatically classified as a non-sexual being in the minds of those around them and even those whom they interact with on a regular basis. Nor is this phenomena remotely confined to the rather specialized world of kink and BDSM events.
Among gay and queer men, my condition is often seen simply as a burden too far out there to be bothered with as a prospective partner. There is a regrettable stigma in being LGBT in our culture, and in part out of that stigma has grown the pursuit of a nebulous idea of “perfection” in our sexual and romantic partners. As if to say “yes I’m in a same-gender relationship, but wouldn’t you be too if you could have him/her/hir on your arm?”
Equally significant though, the media engines of Gay Inc. have worked hard to present an image of what it means to be LGB(t) in America: attractive, upper middle class, white, monogamous, and most importantly, “normal.” Even if I ticked all those boxes save the last, which I don’t, being perceived as “normal” hasn’t been on the table for me since my tics became significantly noticeable nineteen years ago.
It’s tempting I know, to say that I’m not giving people credit, that given a chance, many people would be happy to engage with me as a sexual and romantic entity despite the Tourette. We want to believe that faced with this sort of situation we’d be guided by our better angels and look past something as simple as some barking or twitching.
But we don’t, and while that’s sad, it’s also very human. As “proof” I can offer this utterly unscientific experiment I ran over the course of a couple of years:
When I remove any mention of the Tourette from my online dating profiles, without making any other fundamental changes, I get responses to messages I send out, and get unsolicited messages in my inbox with some regularity. Put the Tourette back, and the well goes abruptly dry. It doesn’t really matter how vague or specific I get, or even if I take pains to note that I don’t have coprolalia. If I’m out about the Tourette, I get nowhere.
Nor does the strategy of getting to know someone over the web and building a connection before disclosing my condition prove remotely viable. Once the TS is out in the open, potential play or romantic partners disengage to seek out partners whose neurotransmitters fire in a more conventional way.
While rejection always sucks, I vastly prefer the passive rejection of an unreturned note or a note never sent, over building a connection with someone only to have them turn tail and run when they find out about the Tourette. This is why after much experimentation, I settled on leaving the disclosure in place in my social media and dating-site profiles.
As an aside, I’ve found in talking to many of the trans* people in my life that there are some clear parallels to be drawn between my own experience as a Touretter and the trans* experience, especially but not exclusively as it relates to dating and sexual agency. While as a rule most of the trans* people in my life reject the idea of trans* identity as a “medical condition,” and I certainly wouldn’t call being trans* a “disability, one could likely replace “Tourette” and “TS” in the preceding couple of paragraphs with “trans* history/identity” and have a painfully familiar storyline to many people.
Despite all the issues inherent in being seen as a Touretter, suppressing my tics at Surrender was hardly a rousing success as a strategy. With part of my attention perpetually diverted to managing the tics, I found it hard to fully engage with the people around me, and I know that I was a bit off my game during opening ritual and my urethral sounding class if nothing else.
On a related note, while I’ve achieved a satisfying level of professional success in my field, although I certainly have goals and dreams as-yet-unrealized, I have doubts as to whether I could I have gotten where I am now, had my entry into this world not coincided with a combination of a strong waning phase and a couple of years where my primary tics were not as socially intrusive as the barking (which has been an on-again/off-again companion for nearly nineteen years). After all, as I’ve discussed before, my much of my work is fundamentally related to sex work.
But beneath all the issues of dating and career opportunities, closets are not, and have never been places where I feel comfortable. When I did consider pursuing play at Surrender, or even just a deeper intellectual/emotional connection with someone, I found myself hyper conscious of the fact that I was not presenting them with my authentic self.
Speaking only for myself, Tourette Syndrome is part of my fundamental makeup, and without its overarching influence, my life would surely look radically different than it does today. It’s not hyperbole to say that there’s no way to really know me without understanding the TS and how it has and continues to effect who I am and how I move through my life.
I’d love to say that I’m going to resolve to be more open and positive about the Tourette, or that I won’t repeat this exact same pattern come Dark Odyssey Winter Fire in February. But the reality is that I honestly don’t know.
That’s the Siren’s song of the closet after all.
2 thoughts on “Hiding to Stay Visible”
I know you’ve mentioned the reaction from dating sites on FB and twitter – I have noticed the same scenario when I mention that I am OCD/Bipolar – its not the same of course, when well medicated or not anxious, most of my OCD behaviours are not noticable, though the racing thoughts and inability to modulate myself of the mania/anxiety are very much so. When they crop up, however, nothing can stop them, and they can be debilitating. Knock on wood, its been several years since they’ve been bad. But people see it as baggage they don’t want to take on.
I wonder sometimes the issue has less to do with not wanting to deal with it, whatever the partiuclar thing in question is, and more to do with not wanting to be judged for the behaviour of partners – particularly in our communities, where the mainstream already has issues. Its not any less shitty of people or any justification. Considering that the more people I meet, the more I find we’re all tweaked to some degree or another, and how different people’s levels of shame affect how they treat others to varying degrees.
*sigh* I don’t know why I should be surprised that people in demographics like the LGBT community or the kink community are just as bad about marginalizing other people as mainstream society is…but I am continually disappointed. I suppose it’s due to the fact that when people say they want acceptance and tolerance, what they generally mean is acceptance and tolerance for their own particular “axes of offense,” not for those they themselves find objectionable.
I can’t even imagine what “fun” I’d have as a person with mental health issues in that sort of scenario. True, pretending to be “normal” is a lot easier for me, assuming I’ve taken my meds, but having a mental illness ranks up there with having a neurological condition or a disability in terms of being invisible to many people 😛