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On the Difficulty of Torch Passing

Liam’s tics have been getting worse. Not like all-of-a-sudden today kind of thing, but relentlessly, creepingly. There were whole years when we hardly noticed them. Long stretches when we were really the only ones who recognized a throat-clearing as a tic, or a foot tapping, or a neck craning. Stretches where teachers and family would comment enthusiastically – and sometimes a little as though we’d been making the whole thing up – that they couldn’t detect any tics at all.

But they were there all the same; docile perhaps, manageable, easily absorbed into the energetic carriage of an eight- or nine-year-old boy.

They would flare, two or three times a year, usually early fall, and Christmastime, and most boldly in the early spring, always accompanied by a spike in the other challenges that makes Tourette’s so fierce: temper, poor impulse control, heightened anxiety, and high frustration. The best analogy we found was the moon cycle: Sometimes the tics and temper were only thumbnail moons, but the cycle always rounds back again and at some point the full moon time comes, and things get really hard.As far as tics go, some are more or less omnipresent; some come and go: a day, a week, a month. Some only crop up in very specific situations: Liam used to slam his head into my shoulder when we were sitting beside each other on the couch. When one shoulder was bruised, we’d switch sides.

When the tics did flare, we’d do the best we could to make sure everyone in Liam’s life knew what they were, knew he couldn’t help them. Rob and I became experts at explaining Tourette’s to school teachers, swimming teachers, family members, a Karate sensei, and a host of strangers in cafes, parks, theatres and bookstores. Twice, I even went into Liam’s classroom and explained tics and TS to his friends.

As kids grow, as they approach puberty, the periods between full moon phases shortens, and the phases themselves take longer to abate. About a year and a half ago, give or take, we kind of stopped being able to distinguish between the good times and hard times. The tics were worse, the anger, frustration and impulsivity felt constant, and Liam continued to beat himself up about all of it.

Tourette’s generally peaks around age 12; Liam is 11 1/2. We’ve been expecting this, I suppose, though I’m not sure what that means. Hard is hard, and when you’re living it, it’s pretty much impossible to contemplate getting through worse.

These days, Liam’s tics are obvious. Not obvious like an awkwardly placed mole; more like a fire alarm or someone throwing up on your couch. He still has the stepping and stomping ones he’s always had, but they’re stronger. He has a whole menu of things he sometimes has to do with his hands, some of which hurt: think of biting your cuticles times ten. He’s struggled with a few different bite-related tics for months: pressing his front top teeth against his front bottom ones until his gums hurt (he’s often scared he’s going to lose his teeth thanks to this); biting down hard and loudly over and over; and easily the most disturbing to be witness to, grinding his teeth. It’s so loud I can hear it from the next room, and it seriously makes my skin crawl. He has a tic which makes him throw his head to one side quickly, and at times hurts to the point of tears.

And then there’s the snorting tic, which first appeared only months after he was diagnosed, and lay dormant, but which has moved itself right in now, thank you very much. It’s a loud, often repeated, forceful exhalation through his nose, and a really great imitation of a large, angry bull. My dad thinks Liam could have a great career in sound effects and voice work. Trouble is, it, like most of them, seem to get worse at those precise moments when the last thing Liam wants is to be conspicuous or annoying. Like a cafe. Or school.

Or archery.

The tics start to escalate when we leave the house to go to the range twice a week, and by the time Liam starts building his bow and warming up, he’s clicking, clacking, grinding, twitching and snorting all at once. It’s all tied up in anxiety – of doing well enough, of feeling uncomfortable at one of the two ranges we use, of being too tired. And of course, it’s a vicious circle: the more Liam is worried about the tics, the more they happen. And you try telling an 11-year old boy in a room full of older teenagers not to worry about standing out and looking silly.

Trouble is, archery isn’t so much a loud, boisterous sort of thing as it is a zen, contemplative, TOTALLY SILENT one. “No talking on the line”, not to mention snorting loudly every four seconds.

Liam’s tics used to more or less leave him alone at archery. Even now, when he’s actually shooting he’s purely still; focused. It’s in the frequent down-times, the moments between arrows, or between ends (group of arrows) when he’s waiting for the other archers to finish before retrieving arrows, that the tics flare. They’re uncomfortable for him, and I’m not overstating it when I say they’re hard to listen to, even if, like me, you know he can’t help them.

We usually go early to the range, and only during the last third of Liam’s 90-minute practices are there usually a fair number of other archers. Archers on a line stand startlingly close; sometimes only inches apart, and each one is trying to drop into their own concentration zone, trying to block everything else out except their body, their bow, and the target.

SNORT. Grind. Clack. Snort.

The other day, I was reading on a little landing in the stairwell at the range, while Liam was shooting. He been up to see me on a break, and things seemed to be going pretty well. I had decided to absent myself from the immediate vicinity to try to let him concentrate a little more; it’s been hard to push through a practice lately, and he’s going to need to manage those anxieties himself if he’s going to continue.

Then all of a sudden, he’s in front of me, clenched, weeping, looking frightened and sorry at the same time. After a few minutes, I got out of him that a parent, not someone either of us recognized, had leaned in towards Liam between ends and asked that he stop making so much noise; it was disturbing the other archers. He had managed to tell her he couldn’t help it, but was too upset to hear her response. He retrieved his arrows, and plowed into the stairwell to find me.

I hugged him, and wiped the tears and after a while, he was able to calm down. But he was devastated; that damage had been done. I told him I’d go down with him, spend the last quarter of an hour nearby, and if I could, I’d just talk to the woman. He went to splash some water on his face and I took my seat behind the line. For some reason, the mother had moved over to the other side of the gym. When Liam came back, he was, of course, still ticking.  The boy on the target next to him glanced up, frowning slightly. And as the tears welled up again, I asked him if he wanted me to go and just talk with the woman who had commented anyway. He did. So I collected whatever courage I could find, and crossed the room. (Don’t we always want to think parents do these sorts of things unthinkingly, with no fear, no anxiety? We know better, of course. We’re just people, and approaching a perfect stranger to talk about something like them having scolded your son isn’t most folks’ idea of a casual chat.)

I waited for the woman to be done talking to her son, and then I excused myself into a seat beside hers.

“Hi,” I said, smiling. “I’m Liam’s mom, over there.”

“Oh,” she said, “I’m sorry. He told me he couldn’t help it. I was just concerned for the other kids; it was getting to them.”

“Yeah,” I said, “They’re tics. Liam had Tourette’s. Not the swearing kind, just the ticking kind. It really upsets him, too.”

“I totally understand,” she said. “I have a son who tics too.”

Seriously?

Well, yes, it turns out. A ten-year-old son, who is currently being seen by at least two different clinics in an attempt to figure out what’s going on. Another beloved boy who is struggling and whose parents are just trying to help him. The woman and I talked for the rest of Liam’s session, about clinics, theories, ages of onset, of just having boys (she has two). When Liam signaled that he was packing up, I thanked her, wished her luck with her son, and walked back over to Liam, whose face became more puzzled as I got closer.

“Well that seemed….to go…. um, better than I expected…which is weird…” he said with more than a hint of suspicion.

“Yes, it really did. Her other son has tics, Liam. She knows. She gets it.” I smiled.

All the way home, I felt elated, connected. I felt like posting that story on the blog immediately. “What happened tonight is exactly why I write about all this stuff,” I told Liam on the way home. “People all have stuff, all have challenges, and we can all understand each other, if we just communicate.”

But my warm glowy feeling was short-lived. As early as that evening, when the boys were in bed, I realized how hard it would be to bridge that same gap with the rest of the folks at the range, especially the other archers. Most of them are teenagers, older than Liam, but not so mature that they might have sons in the ballpark, if you get my meaning.

Rob and I actually sat there that night, and I did many more times over the next week, brooding over how to “get the word out”. I fully believe that if someone knows a) why Liam is, say, snorting, and that b) he really can’t help it, it honestly makes the tics easier to bear, even to ignore completely. Certainly, it would go a long way towards changing some of the other kids’ perceptions that Liam might just be an irritating and deliberately (or ignorantly) bothersome kid. It would help.

I came up with all sorts of ideas: emails; little note cards left on the table at the range; a quiet announcement when Liam was out of the room; enlisting the coach for help with disseminating the information… There were two things common to all the ideas I had: firstly, they all involved me doing the telling; and secondly, none of them would work.

The answer finally came to me on the day of our next session at that range, and I realized how the telling will have to be done.

Liam has to do it.

Not an announcement to the whole group, maybe. Maybe just one at a time, amid the busyness of pulling arrows or setting up, or changing ends. Maybe just a casual word with the one guy sharing his target: “Dude, I’m sorry about the noises. I have Tourette’s and can’t help it. It’s a drag, I know. They’re called tics.” And maybe soon, it will reach a  critical mass, and soon it will just be a non-issue in the club.

But it will, at some point, have to happen. Liam needs to feel part of the club, and the rest of the club has to know him. And the hardest thing, the hardest thing for me, is to know I can’t do it for him. I can handle the other mothers, the fathers, even the coach. But the kids? My time for being the go-between with them has passed. Now it’s up to my son.

1 comment to On the Difficulty of Torch Passing

  • Frank Daley

    Regan:

    Brilliant, fierce, sad, true and yes, hopeful.

    Maybe not everyone in the world has an obvious problem but we all have one or two serious deficiencies in our being reflected in our lives whether detectable or not and the secret ones may be the hardest to overcome.

    You were forced into this but now that you are in it you have to keep writing about it; the word will spread and many people will take comfort, knowledge and courage from what you observe, experience and write about.

    We only choose our writing subjects to a degree; some subjects find us, some compel us.

    Our natures, families and social experiences bring us themes we can’t ignore or dismiss because we are interpreting life as we experience it. Writers can’t not write about these things; we don’t really have any choice if we are true to ourselves.

    You are doing the right things and you are doing them well.

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