In an earlier post I mentioned a common class of questions I see in TS support forums (forae?): How bad will it get? The short answer is: No one knows. The slightly less short answer is: It depends on how you let it affect you.

This brings me to another class of questions I see popping up from time to time: “My [son/daughter] has been diagnosed with TS. Will they ever be able to lead a successful, independent life?” The short answer is: No one knows. The slightly less short answer is: It depends on how they let it affect them.

At heart they’re really the same question. One is just more specific. My answers really are glib, though, and not all that helpful. So I’ll expand a little on how Tourette’s Syndrome might or might not limit someone’s life:

There are two broad-sweep ways in which having TS can limit a person. It can limit what they can do, and it can limit what they feel comfortable doing. The two are quite different, and need to be discussed separately.

If someone has tics severe enough to confine them to a wheelchair (yes, this happens), chances are they’ll have trouble being a mountain climber. I won’t say they can’t do it, but that severity of TS will present some monumental challenges. This falls under the category of what they can do: it’s a physiological limitation.

Now let’s take the case of someone whose tics are so socially isolating that they feel uncomfortable leaving their house. They could feasibly become a mountain climber, so long as they climbed with people who took them as they are, and didn’t judge them for their tics. Whether or not the person goes there is a personal choice at that point. That falls under the category of what they feel comfortable doing. It’s a social/psychological limitation.

So how does this translate into the forum question about a child growing up to lead a successful, independent life? There really are people with TS who would have a hard time working a regular job for physiological reasons. And there really are people with TS who would have a hard time working a regular job for social/psychological reasons. And there are a bunch who wouldn’t have a problem at all.

Which, again, is really no kind of answer at all for the parent of a newly diagnosed kid who posted that question to a support forum. Except for this: Your child will feel as limited as you raise them to feel. Maybe they can’t be a mountain climber. But they may grow up to be a badass programmer, architect, artist, writer, cryptographer, etc. Maybe their tics could lead to social isolation. But you can raise them to believe that everyone on this planet is flawed, and no one has the right to judge them for who they are.

And maybe, just maybe, they’ll tell you exactly who they want to grow up to be, and you’ll be in a position to watch them do it, and encourage them, prop them up when they need it, and cheer them on. Will they be able to lead a successful, independent life? That’s up to them. And you.

P.S. Ok, so this post was mostly aimed toward parents of kids who have just been diagnosed. What about adults who were diagnosed late in life? I hope you can already answer this question for yourself! Your diagnosis changes nothing, except to tell you why you tic.


Fun With Knives

Hollywood has the unfortunate habit of trying to work Tourette’s Syndrome into comedies without really understanding what’s funny about it. Invariably it becomes slapstick. A gag. Something to make the audience laugh out of ignorance rather than understanding. The thing is, TS really can be funny. But like most humor, subtlety is often funnier than blatant in-your-face jokes.

A little over a year ago I was doing dishes when one of my full upper-body tics took hold. These involved jerking my head forward while throwing my hands up in the air.

So here’s my version of the events: Doing dishes, rinsing a knife, tic tic tic, look up to see my wife standing in front of me with a really appalled expression on her face.

And here’s my wife’s version of the events: Walk into the kitchen to see husband repeatedly stabbing at his own face with a chef’s knife.

Both versions end the same: “Just… Put… Down… The… Knife…”

We both got a good laugh out of it later. In my case I was laughing within minutes. In her case it took a little longer. You can understand why. I was pretty glad when that tic faded into the background and eventually disappeared. But I think my wife was even more happy.

Last week we had cake at work. After cutting the cake one of my co-workers handed me the icing-covered knife to lick. Right as I stuck the knife in my mouth I couldn’t help thinking, “This would be a really bad time for that tic to show up again!”

One of my other co-workers looked over at me and said, “There’s no way this ends well.” Maybe they know me better than I thought.