In a recent thread on a Facebook group about Tourette’s Syndrome someone posted the statement that there’s nothing funny about Tourette’s, and that pretending there is is a disservice to people who have it.

I have to disagree. There’s humor to be found in practically everything. It sounds corny to say this, but I learned it from my mother.

Years ago, before I was diagnosed or even knew what Tourette’s Syndrome was, my mother developed non-Hodgkins B-Cell Lymphoma, which metastasized in her brain. By the time the doctors caught it and performed an MRI about a third of her brain volume consisted of cancer cells. Even today, this late stage condition is fatal. She lived for two more months while the cancer cells continued to grow, increasing pressure on her brain tissue, causing short term memory loss, incredible pain, and eventually death.

Not very funny, right? Certainly a lot less funny than having tics I couldn’t explain.

During one of my visits with her before she died I was telling her a story from work. About half way through it she stopped me and asked, “Who’s this about, again?” My heart sank. A that point she had about five minutes of working memory, and my story had exceeded it. “It’s my co-worker, mama. It’s just a work story. We can stop.”

“No!” she told me, “Just start over. You know, all this means is that you can tell me the same stories over and over and I won’t get bored!” Then she laughed like it was the funniest joke ever.

It’s easy to attribute cynicism or irony to what she said and did, but it wouldn’t be true. She genuinely found the situation funny. She knew she was dying, and accepted it in ways I couldn’t at the time. So she moved on, and when she saw something humorous she laughed at it. It was that simple.

It’s easy to feel sorry for yourself. It’s also easy to point out that someone out there has it worse. But neither of those really does anyone any good. One lets you wallow in your pain. The other makes you feel guilty for wallowing in the first place. Either way you come out of it feeling worse than you did before.

My mother taught me to accept what is and then move on with life. I don’t always do it. (Hey, who doesn’t like a good wallow from time to time?) But I certainly feel better when I do.

A couple of years ago, before my vocal tics started picking up, I had a tic in which I’d whack my legs with the edges of my hands, like an opposite karate chop (thumbs hit first). When my thumbs would start to hurt I’d twist my arms around so the backs of my hands hit my legs. By the end of the day I had bruises on my legs and my hands hurt like hell. My wife named it the “seal tic”.

At one point we were at the grocery store (one of my highest stress environments) and the tic hit and just wouldn’t stop. We were standing by the milk fridge. She was just about to grab a gallon of milk, but stopped. She stood there watching me, a smile starting to creep in, and without any prelude SHE started doing the tic and making seal noises.

I couldn’t help it. I had to laugh. I knew she wasn’t making fun of me. She was joining me. People weren’t staring at me any more. They were staring at us. Even as I broke out of the tic I found myself thinking, For better and for worse, in sickness and in health, for richer for poorer. This was the same woman who held me when my mother died, the same woman who welcomed me home after the doctor’s visit when I got my TS diagnosis, the same woman who told me yes, we were going to have kids regardless of my genetics or her genetics, or what other people think.

And dammit, she saw the humor in things just the way my mother did. And she was right. It really was funny. And I laughed like it was the funniest joke ever.


Making Things Work

In my post about hobbies I mentioned that one of the things I like to do is record sound. For me sound is as rewarding a pursuit as photography because at heart they really are the same thing. A good photograph requires the photographer to find the right scene, find just the right vantage point, compose the photograph to best portray their interpretation of the scene, and to wait for conditions to be perfect. A good sound recording requires all of those, too.

For a recordist with TS, that last part is the real kicker. For conditions to be right I need to be absolutely silent, which is something I can almost never actually do. The photographic equivalent of a recordist with TS would be a photographer who compulsively wraps bright flashy Christmas lights all over their body. Just by virtue of standing near their camera they will affect the scene in a negative way.

The first several times I went out with recording gear I came back with an entire card full of contaminated tracks. Every single one had at least one vocal tic embedded in it. I cleared the card, charged my batteries, and tried to find ways to make it work. My first real success was a combination of semi-directional microphones, a loud source, and a good book I could read while things were rolling. I still ticced, and some of my tracks were still contaminated, but it was progress. I couldn’t help wondering if there was some other way, though.

One of my favorite approaches to photography is to use a large format camera. They’re big, they’re clumsy, they’re glacially slow to operate, and they use (gasp!) film to record the image. But the act of using a large format camera is, in itself, a bizarre form of meditation. There’s an almost ritualistic approach to scouting the scene, setting up the tripod, pulling out the camera and assembling its parts, composing the scene, focusing on the ground glass… Heck, someone should serve wine and cheese and play classical music in the background. (Wait a second… I said “ritualistic”. Could my love of large format photography be an OCD thing?! Curiouser and curiouser, said Alice.)

I found myself wishing there was such a thing as large format sound. Not so much the bulkiness of the process as the meditative approach it dictates. Meanwhile I continued to try to work around the limitations TS placed on me, and kept improving my technique in the field. I was getting better tracks, but the whole process was still an exercise in frustration.

Then I was invited to work on a project that changed everything.

Most field recording results in relatively short tracks. Ambience recordings may run for several tens of minutes, but for most field recording five minutes is considered a little long. Three and a half minutes is more typical. Depending on the sound a track may be as short as a few tens of seconds or less. All of this means a lot of interaction with the recording gear: starting and stopping, recording file numbers and slate information, repositioning microphones between takes, etc. All of it means the recordist has to stay relatively close by, tics or no tics. I’d found ways to make it work… sort of… but none of it was ideal.

The project required tracks that last for at least an hour. During that hour absolutely nothing about the setup could change: not the mics, not their position or orientation, not the gain on the preamps, nothing. As much as possible the gear needed to be set up, started, and left alone. As I thought through the ramifications of the requirements I realized what it actually meant for the recordist. It was AWESOME!

A couple of weeks ago I made my first recordings for the project. I found just the right scene, scouted out a good vantage point for the microphones, aimed them at what I thought were the most interesting sounds in the soundscape, started recording and…

Then I just walked away.

I walked to the far side of a ridge so none of my tics would be picked up by the mics. This time I didn’t bring a book. I lay down, closed my eyes, and ticced to my heart’s content with a big smile on my face. I let my gear run unattended until it was time to stop the recording and move to the next location.

The recordings weren’t perfect. The other sound person on the project pointed out a number of issues I’d need to fix before heading out again. But for once none of the flaws had anything to do with my tics. They were all technique. That’s something I can work on!

Last weekend I headed out to record the next set of sounds on my list. After everything was set up, levels were dialed in, slate information was recorded and everything was rolling, I grabbed my book and walked away. That’s when it hit me: As unconventional as it was in its execution I’d found a way to do large format sound – sound that didn’t just work around my TS; it made it a non-issue.

In a way that’s what I’ve done with all of my hobbies. Photography? I work from a tripod most of the time. Kite aerial photography? Tie off to a waist belt so my arm tics don’t swing the camera. Machining? Go CNC! (Actually most of my machining is hand crank, but with rare exceptions I wind up with vocal tics while in the shop.) Writing? That’s the great thing about writing: tics don’t matter. And now sound.

The trick doesn’t lie in finding what you can and can’t do. The trick lies in making things work.