Tics and Traveling

One of the down-sides of having Tourette’s Syndrome is that you simply can’t blend. Most of the time this isn’t an issue, but there are certain circumstances under which it’s a virtue.

An obvious one is espionage. You have two spies entering a building. One looks strangely like Daniel Craig – wears a tux like he was born in it, exudes suave and confidence, and has those piercing blue eyes that draw you to him like… Ok, actually that’s just as bad as having tics. Start again!

One is completely nondescript: average height, average weight, a forgettable face, no bling, no flash. Someone like that is going to be able to get in the building and probably gain access to whatever they need through basic social engineering. “Hey, is there a restroom around here? Oh, no, I won’t be a minute.”

The other spy has TS… Yeah… EVERYONE is going to notice them. Everyone will remember they were there. It’s like that part of the cop show where they ask the only witness if they remembered anything else about the incident. “Well there was this one guy who kept whacking himself and saying, ‘Cheeseburger!'” This is why I’ve never considered espionage or crime as a career choice.

Another circumstance in which having tics is a drawback is having to travel by air. Ever since 9/11 the world has become more paranoid about the security and safety of air travel. I’m glad, because I’d like to know that’ll never happen again. But at the same time it makes it more difficult for people with TS to fly because security staff are trained to look for people who stand out. Who look different. Who act different. People who don’t blend in.

I have a long long list of incidents I’ve had with airport security. For a while I couldn’t fly without being pulled out of line at every security checkpoint. My bags were searched. I was searched. I’d go through the backscatter machine like a good little traveler and still get the pat-down search. In one instance security came up to me at the gate during boarding, pulled me out of line, and emptied my bags onto a table. I was already inside security! I was about to board the plane! It was humiliating. It also made me late for my flight.

It got to the point that I really hated to travel at all. If I lived anywhere but an island, I’d have sworn off air travel altogether. But out here in the middle of the Pacific I really don’t have the option to drive.

So several months ago I paid my fee, gave them my fingerprints, and submitted to a background check by the Department of Homeland Security so I could qualify for TSA Precheck and get a TSA Known Traveler Number. I passed, of course (can’t see me tic in a background check!), and got my KTN.

Question was, would it actually help? Last week I had a unique opportunity to put it to the test.

Last Sunday my sister called to tell me that our dad had fallen ill. She and my brother couldn’t fly out to be with him and help him through all the doctor’s visits, so I offered to. “Hey!” I thought, “What a great opportunity to use my KTN and see if I stop catching so much crap for my TS!” Problem was I couldn’t find anywhere to enter it on the airline’s booking page. “Oh well,” I figured, “I’ll do this test some other time.” So I flew out there without it.

I didn’t even get on the first plane before the run-ins started. “Sir, please step over here.” Sure enough, they ran my bags twice, ran me through the backscatter, pulled me out of line, patted me down, and damn near stuck a radio tracker and a numbered ear tag on me. “Have a nice flight, sir.” Right…

I stayed for a week, got my dad to all his appointments, and got him on the road to recovery. Once I was sure he was going to be ok I made arrangements to fly home. While booking my ticket for the return flight I finally found the little checkbox that let me say I’d gone through the TSA Precheck process and enter my KTN. When I printed my boarding passes I looked to make sure it said “TSA Precheck” on them. Sure enough, there it was. Yay!

But the real test was the security checkpoint. I went in the “TSA Precheck go here” line (which was incredibly short!), did not take off my shoes, did not pull my laptop out of my bag, and… did not get harassed by security. At all. No backscatter, no pat-down, no glares, no nothing. When they told me to have a nice flight I honestly thought this time I might.

And I did. It was glorious.

The one other thing I did for this set of flights was to get a medical ID bracelet made. (In teal, no less! Happy TS awareness month!) It’s not the full-blown Medic Alert bracelet that has an 800 number with a patient ID number and all that. I don’t need that kind of service. I just needed something that said I had TS, and an emergency contact number (my wife) so that if anyone had questions they could call and ask.

My thought was that if airport security decided I looked like a threat and pulled me out of line while I was boarding my plane I could show them the bracelet and say, “Hey, I have TS. I’m not ticcing because I’m nervous or on drugs, I’m ticcing because I tic.” But it never came up. And now that I paid the government to fingerprint me and dig into my past, it might never happen again.

One can only hope.

A Sign Of Hope (TS Awareness Month!)

May 15 – June 15 is TS Awareness Month in the United States. I have an awful pattern of not realizing this until after the month is over, so I’m trying to be proactive this year and get at least one post in on time.

Despite what folks may think, a great many people with TS don’t want to be “fixed”. They just want to be accepted for who they are. I feel a little like a hypocrite for writing this since I’m currently taking medication for my tics, but it’s true even for me. Tics have been a part of my life for as long as I can remember. I’m medicating now because some of my tics are causing physiological damage to my neck and shoulders, but I’m only medicating enough to slow them down so I stop getting injured. The tics are still there. It’d be weird for me if they weren’t.

What would be nice, though, is if people just accepted them and moved on. I’ve made a life for myself in which that’s the case. My family takes them in stride. My co-workers take them in stride. Other people I interact with at work and on the street take them in stride. It’s great!

But that’s not true for everyone. I still hear stories of people getting kicked off of buses, told to leave stores, or being harassed in their own workplace. It makes me sad, but I think there’s hope. It doesn’t come in the way of increased awareness or anything like that. It’s advertising.

As time goes on, advertising has a larger and larger impact on our lives. Used to be you opened up a web browser and you could spend an entire afternoon surfing the ‘net without running into a single ad. Now practically every web page has ads. Heck, even this thing has ads! (Or so I’ve been told. The author’s view of a WordPress site just has a little box that says, “Viewers may see an ad here.”)

And yet we navigate around them. Our eyes slide past the ads and get on to the stuff we’re interested in. No matter how prominent the ads are, we still use those web sites. We still access that content. It may annoy us at times. (How many Youtube video have you watched in which you had to wait for an ad to finish, then click the X on the little ad box that popped up, then click the other X on the other little ad box that popped up?) But even knowing the ads are there we still go to those web sites!

WordPress is a little special in that it doesn’t show ads to authors as they’re writing. But you have to wonder if the employees of Youtube or Facebook or any of the other sites out there that live off of their ads have to navigate through their own ads, or if they have a magic off-switch. My guess is they don’t.

In case you haven’t picked up on the analogy yet, ads are a lot like tics. They aren’t typically pertinent to whatever is going on at the time. They may be annoying, humorous, or just monotonously present. There may be particular ones that grate on the nerves and others we hardly notice at all.

Just for grins go back and re-read that last paragraph as if I’m talking about ads. Or tics. Try both. See?

The point is that the ads don’t stop us from using those sites. Or watching those shows. Or reading that newspaper or magazine. Or really anything. We’ve learned to accept them, adapt to them, and move on. And yeah, occasionally we actually get something out of one.

I have to hope that the same will one day be true of tics. It’d be great if some day people are just as unlikely to say, “Yeah, can’t stand that guy who jerks all the time…” as they are to say, “Yeah, can’t stand that site with all of its ads for nose cream…” (But who doesn’t love ads about nose cream, am I right?)

So happy TS Awareness Month, everyone!

(And now a few tics from our sponsor…)

“Why Doesn’t My Doctor Know More?”

This is a complaint I see all the time in TS support forums (forae?) Why doesn’t my doctor know more about TS? Or about my tics? Or about medications? The answer: They’re human.

Med school only lasts for four years, followed by three to seven years of residency. During this time an aspiring doctor has to cram their head with every detail they can of human anatomy, cellular biology, congential conditions, neurological conditions, disease, trauma, perinatal health, geriatric health, birth complications, gastrointestinal complications, cardiovascular complications, respiratory complications, genitourinal complications… If I wrote down the full list it would be incredibly stupidly long, and wouldn’t even start to cover the actual information they need to remember about each.

All of this needs to get packed in there in only four years. Depending on where they do their residency they may never run into a single patient with TS. Even if they do, that may not be the chief complaint that brought them into contact with that patient. (An unresponsive trauma patient with TS looks exactly like an unresponsive trauma patient without TS.)

All of this means that unless a doctor specializes in neurological conditions their entire education on the topic of TS may consist of nothing more than a paragraph or two in their book of mental disorders. If they did their residency in an ER, a cardiothoracic surgical center, a dialysis center, or anything other than a neurology center or a psychiatric facility, that’s probably the last they’ll ever see of it until their first TS patient walks in the door.

Unfortunately a doctor who doesn’t know about TS will often come across as if they do, sometimes spouting patently false information. A common case of this is the general practitioner who scoffs when a patient asks if they might have TS, saying, “Well you’re not swearing uncontrollably! Obviously you don’t have Tourette’s!” As terrible as this sounds, it does happen. Here’s why:

During their schooling or training, every medical professional is told to appear confident. It’s drilled into them. It doesn’t matter if they’re a surgeon or a GP, a paramedic or an EMR. “Be confident.” I just finished my EMR re-certification, and I heard it several times during the course. “Be confident.”

The reason why this is drilled into us is that it helps keep patients calm. The last thing a victim of a car crash wants to hear is their EMT saying, “HOLY CRAP! That’s a LOT of blood!” What they need to hear is, “I’m an EMT. I’m going to do everything I can to help you.” Guaranteed the EMT is thinking about the blood, but outwardly they will appear calm, collected, and confident in their skills. It really works, and it can help keep patients from going into shock so it really is important.

Unfortunately the way this plays out in the doctor’s office is a doctor who proceeds with (apparent) confidence about something they may or may not even remember from when they were in school. From their standpoint it’s not a life-threatening condition, they’re not misdiagnosing anyone (remember, do no harm!), and didn’t they see something on Youtube about some guy who swore a lot?

Of course there are better ways to appear confident while still admitting to a patient that you need more information before you can render a diagnosis. But before you judge, ask yourself if you’ve ever done anything similar. Someone’s computer’s running slowly? Must be malware! (Actually it’s low on RAM, and the disk is 98% full.) A friend’s car is running rough? Must be the gas they’re using! (Actually their spark plugs are old and the air filter needs to be cleaned.) Your neighbor’s kid is annoying, and never stops making all those noises? Must be bad parenting! (Actually that’s a kid with TS.) It’s part of the human condition. You run with the information you have and hope for the best.

The good news is that most doctors are genuinely interested in what they do and won’t pull this kind of a stunt. It’s one thing to appear confident. It’s another entirely to refuse new knowledge. Most doctors are receptive if you offer them valid new information, even if it contradicts what they believe they know.

This is why it’s important to be your own advocate. If you know you’re seeing a new doctor about TS, bring material with you that you can give them. It helps if the material comes from a reputable source. The DSM is a good place to start since that’s what defines the diagnostic criteria. A general practitioner is unlikely to have a copy of the DSM in their office, though a psychologist, psychiatrist, or neurologist almost certainly will. Most libraries have the DSM in their collection, so copying out the pertinent sections is relatively straightforward. Even if you know the doctor has a copy of the DSM, bringing them a printout of the chapter on tic disorders can help.

Another good source of information is any of the national Tourette’s Syndrome association sites. The sites for the Tourette Association of America and Tourette Canada are excellent resources. Check the one for the country you live in. In addition to having information you can print and take with you to a doctor’s visit they may also be able to help you find specialists in your area who have experience with TS.

So what do you do about a doctor who’s not interested, or who refuses to read the material you bring? Nothing. Find another doctor. If you’re their first patient with TS and they’re not geeking out on the idea, there’s not much you can do to change their mind. Find a doctor who’s interested and start over.

Keep in mind that medical treatment of any sort, not just that related to TS, is in many ways a conversation between two people – the doctor and the patient. Any time that conversation starts to feel one sided, it’s time to move on.

Artistic Identity

In previous posts I’ve mentioned that I do photography and field recording. Each of these can be considered an artistic pursuit. I don’t think I’m there yet with field recording, but I think I’ve been there with photography for a while. A good bit of the photography I do, especially recently, has been what I like to call documentation photography – technical illustration, PR photography, or documenting the state of a system before work is done on it. But the bulk of the photography I do qualifies as artistic expression.

Unlock the Phone
Unlocking the Phone

I’ve seen statements from a number of artists who are autistic, or schizophrenic, or bipolar, or even ticcers like me, who describe how their art is impacted by these things, but I have a hard time seeing it in my own art. If you put my photographs next to those of someone without TS, you might be able to say, “That’s his,” or “That’s hers,” based on style, but I’m hard-pressed to look at mine and say, “That’s clearly a manifestation of the TS mindset.”

Can We Get There By Laser Light?
Can We Get There By Laser Light?

Which makes me wonder: Does my TS impact my art at all? Or am I too artistically inhibited to allow it to come to the fore? Is there some third possibility I’m not seeing? Does a person’s art have to focus on their condition in order for them to say, “My condition impacts how I approach art”? Or can it simply be something that lurks in the background and comes out when the artist goes out to play?

Sand Play for Two
Sand Play

I know my OCD has an impact on the technical aspects of how I go about doing photography. Years of doing large format film photography and reveling in the meticulous, painstaking approach it requires led me to the conclusion that a certain amount of obsessive mindset can be a good thing. But that doesn’t mean it has an impact on why I do it or what I photograph.

No Need For Shoes

No Need for Shoes

I may have found a clue in the statement of a group whose goal is to, “Help artists express their angst and spread awareness and knowledge to others through the many mediums of art.” The problem is, I don’t consider myself an angsty person, and “angst” is not how I’d describe my relationship with Tourette’s Syndrome or art. Curious? Driven? Odd at times? Yes. But angst? Not really.

If anything, I do art so I can play. Like any game, sometimes it’s intense and sometimes it’s whimsical. Sometimes it’s neither. I know my art does absolutely nothing to raise awareness about TS or OCD, but that’s not its goal. Maybe that’s what I’m missing.

Fine Guidance System

Fine Guidance System

And maybe that’s ok. Maybe it’s ok simply to do art as a way of saying, “The world? It’s not what you think.”

Humor

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.

Movie Review: The Road Within

In several (ok MOST) of my previous posts I’ve poked fun at Hollywood filmmakers for doing such a shoddy job of portraying Tourette’s Syndrome and, to a lesser degree, Obsessive Compulsive Disorder. To be fair there have been films that got it right, most notably Front of the Class. (Obvious reason: the author of the autobiographical book the movie was based on has TS!) But the vast majority of the films coming out of Hollywood just… miss the point.

But now I have to add another to the list of films that got it right: The Road Within.

I toyed with titling this post, “Why I Should Stop Making Fun Of Hollywood”, but it seemed a little too long. Even so, the sentiment is true. Obviously there are filmmakers who can and do get it right.

The Road Within scored points with me for a couple of reasons: First, Gren Wells, writer and director of the movie, got her facts straight. The portrayals of TS and OCD in the movie really are spot on. I really didn’t find anything I could point to and say, “Stereotype!” much less “Wrong!” Next, the performances by Robert Sheehan and Dev Patel, each playing a character with TS (Vincent) and OCD (Alex), respectively, were also spot on. Each picked up on the frustration that can hit when the events of the world around you are running completely counter to what your brain is telling you it needs. And each did a wonderful job of balancing the human aspects of their characters against the outward signs of what’s going on in their characters’ heads.

But what really won me over with this movie was the humor. It’s full of humor the way humor so often strikes us in real life: raw, painful, and for some inexplicable reason just… funny.

Too often movies with TS or OCD characters go after the slapstick gag: the swearing tic at just the wrong moment (badump bump) or having to gingerly step over cracks in the floor (rimshot!) But in The Road Within one of the funniest moments came about because Vincent, Robert Sheehan’s character, wasn’t swearing. Wasn’t ticcing at all, actually. And not five seconds later, Vincent’s reaction to not ticcing caused one of the more emotional scenes in the movie. For me, anyway, because he echoed a sentiment I’ve often felt frustrated by. I found myself simultaneously laughing and thinking, “Damn…”

And that, right there, is what really sold me on the movie. I’ve never identified with the TS character in Deuce Bigelow. I’ve never really identified with any TS character I’ve seen in a movie, with the exception of Front of the Class. But I found myself identifying with both Vincent and Alex in The Road Within. As I watched the film I kept thinking, “Yeah. That.”

In writing all this I’ve utterly neglected the third character that makes up the main trio in the movie: Marie, played by Zoë Kravitz, who has an unspecified eating disorder. I have no experience with eating disorders, but one bit of dialog in the movie sold me on her character. Vincent and Marie are sitting in a car, talking. Vincent asks the most obvious question: “Why can’t you eat?” Marie replies, “It’s not that easy.” As simple as this sounds, it made enough sense to Vincent that he didn’t press further.

One review I read of this movie seemed to miss that point. It accused Gren Wells of backing down from really tackling issues of mental health, and cited that same exact scene to make the point. But to me it carried the day. How many times have I been asked, “Why can’t you just stop?” I know I’m projecting, but how many times was Vincent asked that in his life? Whether it was Sheehan’s acting or my own projection, when Marie answered his question with that simple sentence it seemed like Vincent reacted the only way he could: realizing it was the same damn thing with the same damn answer. If it really was that simple, he wouldn’t tic and she would eat. But it’s not that easy. It never is.

In the end the movie asks something of its viewers that people I know with TS and OCD would ask of the people around them: Stop thinking of us as a diagnosis. Think of us as people. Sometimes our needs make no sense: a need to know things are clean, a need to make a sound or move a certain way, a need to gain just an ounce of control over a body that so often isn’t under our control at all. But sometimes they’re the same needs as everyone else’s: the need to eat, the need to sleep, the need to feel accepted or even loved by the people around us. The Road Within is more a story about three people than it is a story about three people with mental health issues. I think it’s better that way.