A little help from my friends

I was in the hospital, on my second consecutive day of in-patient testing, bored out of my mind. I thought I’d check the group chat. There were forty-some-odd unopened messages, most of them voice messages debating the merit of a certain Hollywood beefcake.

“Jason Momoa just does it for me…he doesn’t need to be dynamic, I just want to look at him!”

The nurse walked in as I tried, definitely too late, to pause the voice message in the group chat. I did my best not to crack up while they took my vitals. I made it, just barely, then collapsed into fits of laughter as I relayed the incident to my friends on the other end of the screen.

On the other end of the state, the country, the world.

You see, I haven’t actually met any of these people. Yet, we share more in common than some people who I cross paths with daily. Their support has been a lifeline.

All of us either have Tourette Syndrome, or are part of a family in which at least one other person has it.

While I have dear friends who I love to the moon and back and whose support has been nothing short of invaluable, there is something irreplaceably reassuring about being able to relate my kooky, bizarre, sometimes-hilarious, sometimes-maddening experiences with my neurological disorders to people who’ve gone through the same exact thing at one point or another. As I’ve gone through the gamut of trying to find answers for a bizarre complication of an already bizarre disorder, these people have helped keep me sane. Trying to find help from doctors who don’t know anything about what’s wrong with you can make you feel a little bit crazy, and it’s in those times that you really need people who’ve been through some variation of the same exact thing themselves.

This brings me to my point: if you’re trying to deal with Tourette Syndrome on your own, stop.

Some things in life take a village, and TS is one of those things. The support of a community which inherently, without explanation, understands you is invaluable. Whether what I need is to laugh at an unimpressed strongly-accented evaluation of Aquaman instead of staring at the wall during testing, or to dig in and figure out exactly how to handle a rather distressing batch of intrusive thoughts, these people understand the experiences that I’m going through and usually know how to help me in ways that are continually insightful and surprising.

I didn’t used to rely on others in the TS community like this. I used to try and go it alone. I thought, honestly, that being able to handle things myself made me stronger. That, and I was worried what others would think if I opened up about what the inside of my mind was really like. Nobody wants to hear me go on about how anxious and stressed out I feel because my brain is going on strike and can’t process the fact that the left and right sides of things don’t match and everything is uneven!!! Or, I know that I can’t just go around touching other people but I have this new tic where I need to poke my husband in the side and say “boop!” and I’m really embarrassed about it. Or, I’m having a bad day because my coughing tic is making my throat sore but I don’t want to seem grumpy about it. But, when the audience is another bunch of people who’ve been there, done that, talking about these things is suddenly just as okay and normalized as talking about Aquaman.

I was okay without friends in the TS world. I mean, I had friends before I stopped hiding from this community to which for a long time I was a little afraid to belong. I still have those friends, and we're SUPER close. I wouldn't have made it this far without them, that much is for certain. Some of them are GREAT friends - the sort that will drive you between cities, no questions asked; That will help you pick up the pieces after a particularly bad breakup; That will take their lunch break to bring you food from the artsy cafe downtown while you’re in testing because hospital food is terrible. But from the time I was a child I always felt a little isolated when trying to relate my experiences with TS to others who don't revolve around its unique little sun. No matter how much others want to get it, if they haven’t lived it sometimes listening is the best they can do. And sometimes you don’t need someone to listen, you need them to understand.

So, I’ve learned to stop running from TS and to embrace the unique, kooky, amazing community of others living out the same TS journey.

I've learned to get by with a little help from my friends. And I’m so very glad that I did.