By Eli Reeves
I spent a long time in my life feeling excluded and otherworldly almost, even before I was diagnosed with Tourette’s. I never fit in and I seemed to slowly drift further and further from the norm society placed upon me. My tics were always mild and mostly unnoticeable, but when I turned 15 it was like a sudden explosion. I lost control of my body and went from mild to severe within less than a week.
Up until then, I didn’t even know I had Tourette’s. A couple excruciating, isolating months later I got diagnosed. At this point it was obvious to me that I had it, I couldn’t control my movements and I was yelling every couple seconds, but I wasn’t prepared for the rush of emotions a diagnosis would give me. I felt alone and hopeless, and I spent a lot of time locked up in the house. The only way I could cope was by watching YouTube videos and documentaries to give me a sense of normalcy.
Right at my lowest point, someone I had been subscribed to posted about making a chat for people with Tourette’s. This was the first time I’d ever had any contact with anyone else, and it changed my life. We ended up having long Skype calls with around 20 people every day, and it was exhausting but exhilarating. I lost my voice a couple times and my chest was bruised from hitting it, but I felt happier than I had in a long time. I finally felt like I wasn’t the only person to ever deal with Tourette’s, because I now had friends and knew people with the same experiences as me.
It was a huge weight off my shoulders. However, the only contact I had was through the screen, and Skype calls and documentaries eventually felt less helpful. One of the documentaries I came across caught my eye. It was for a camp for kids with Tourette Syndrome, called Camp Twitch & Shout. Everyone in my family knows I refused and never had any interest in camps, so when I told my parents I wanted to go they were shocked.
I was nervous, but I’m so glad I went. I truly can’t describe the atmosphere of camp. There’s total acceptance, understanding, and love. The second you arrive you have found a new family and made lifelong friendships. Being surrounded by over a hundred people with Tourette’s did take its toll on my brain and body because it could be overwhelming and triggering at times, but nothing could outweigh the positives.
I caught a lot of tics, some funny and some bad, and every single one of them I wear like a badge with pride of what I overcame. Camp was the best week of my life. I’ve now been two years, and it feels like every year just gets better. I caught some tics I’ve disliked, but compared to the experiences I’ve had and people I’ve met it was worth it.
Camp Twitch & Shout is the only place on earth I truly feel safe to be who I am, and every day I look forward to next year. I did so many things I never thought I could do and never planned on doing because my counselors and fellow campers believed in me. I finally felt confident, and most importantly I believed in myself. I’m stronger than my Tourette’s, and I know that now. There were times I had tic attacks, anxiety attacks, and cried because I didn’t want to leave, but every single time I felt bad there was an overwhelming amount of support from the counselors and campers. I’ve never been anywhere so amazing and accepting of differences, it extends much further than Tourette’s. They’re great at handling everything. Every bruise and tic I’ve had has been worth it. Because of my online and real life friends with Tourette’s, I feel cared for and protected.
I don’t feel alone or worthless anymore. I now feel like I belong in the world and I have a group of people who love me for who I am. I really wish I could describe how good it feels to just talk to someone else. No words will ever do it justice, it’s something you have to experience to understand. The topic doesn’t even have to be about Tourette's; just being around other people who understand is therapeutic. As I’ve always said, I’d rather have severe Tourette’s and be happy than have mild Tourette’s and feel alone.
I know my connections have made my tics worse, but I wouldn’t trade it for the world. There’s nothing more damaging than isolation, especially when you are disabled, and my friends with Tourette’s have opened me up so much. I feel like a flower that’s blossomed, when before I felt closed off and damaged.
I can’t stress how important it is for everyone else to search for friends who have the same disorder(s) as them, online or offline. Even in my small Tennessee town, I found someone in this city who has Tourette’s too! You just have to keep searching and never give up. My quality of life has increased greatly, and even though people say you shouldn’t do things that make your tics worse I do it. I do it because they’re my family, my friends, and because they have taught me love and acceptance like no one else. It’s really powerful to stand with someone else who’s felt what you feel and know that you’ve made it through.
Meeting other people with Tourette Syndrome is worth all the tics and tears that happen, and I’m so glad I decided to push through my anxiety and reach out. I really wish I could describe the pure joy and wholesomeness of speaking to other ticcers, but it’s an experience beyond words. I’d like to end this by saying thank you to every single person I’ve spoken to, you’ve all changed my life. Together we can do anything we set our minds to. Tourette’s is our superpower!
Eli Reeves is a disability activist online. You can see more of his posts on Twitter via @ticrific.