I don’t have anyone like me in my life

My grandma, who is one of my best friends, showed me this website. I was excited that people like me can share stories and talk about our experiences together. I longed to have a spot on the website so I can do the same!

Tourette’s Syndrome affects my life because when I was about 6 years old, my mom noticed some eye blinking and throat clearing behaviors, not knowing they were tics. It’s stopped for a while, but resurfaced when I hit about 12.

Ever since I was in third grade, I stuttered. My speech was sometimes so bad I couldn’t get out sentences. That also stopped for a while, but has always found a way to come back. Around the time my tics appeared again, my stutter was in full swing, and hasn’t stopped since. I am now 14.

My mom was worried about me and was always looking up possibilities that could be causing these tics and my stutter. She thought it might be Tourette’s Syndrome, and I was in denial. I didn’t know what to do. This went on for years — no diagnosis, bad stutter, and tics. I’ve always had Tourette’s like symptoms as well — couldn’t ever fall asleep, OCD, as well as general anxiety and depression.

All still impact my life, and it’s very hard to deal with. So this past November, I went to University of Michigan to find out what’s happening to my body. The neurologist told us that I had Tourette’s Syndrome, and having a name to what was going on felt relieving, yet, I also was at a loss for where to go from there.

The neurologist also told me that my stutter was something along the lines of a vocal tic. It’s all connected in some way. So, being on this blog website would be a release for me to talk to other people like me, since I don’t have anyone like me in my life.

Nothing like a short, sweet, to-the point POSITIVE response!

Hey everyone! In my last post I talked about how I was having trouble recently participating in my poetry class because of my tics. So, I sent my professor this e-mail to explain:

I wanted to let you know that I’ve been having trouble participating in class lately due to my tics. I’ve had this problem in the past, but it seems to be becoming more frequent again. More often than not, when I want to say something in class my tics interfere and I’m not able to open my mouth and say what I want to say. Hopefully this problem will pass soon, but I’m really not sure.

I wanted to let you know about this in hopes that it will not affect my participation grade.

Thank you in advance for your understanding.

She responded to my e-mail yesterday, and this was her response:

Thanks for letting me know, I had noticed your participation has been a little less than usual, but I understand.

Short, sweet and to the point! I was really glad to get this e-mail from her because I had been worrying that she would dock my participation grade. But, nope! She understands, and once again with a little education and explanation, TS is not going to hold me back even when the tics do get rough.

Trouble talking in poetry class

Lately I seem to have been having more trouble than usual talking in class because of my tics. When I have something I want to say in class, more often than not, my body locks up, I start ticcing a lot, and when my body has finally calmed down the conversation has moved on and what I had to say is no longer relevant or I’ve completely forgotten whatever it was I was going to say.

I have a tic where my eyes go out of focus, my whole body locks up and freezes, and I can’t say a word. That seems to be the No. 1 tic that’s interfering with my talking in class. The only class this really interferes with is my Poetry Writing 2 class. The rest of my classes don’t really give a class participation grade, but my poetry class does.

So, I decided to e-mail my poetry teacher today, and this is the e-mail I sent her:

I wanted to let you know that I’ve been having trouble participating in class lately due to my tics. I’ve had this problem in the past, but it seems to be becoming more frequent again. More often than not, when I want to say something in class my tics interfere and I’m not able to open my mouth and say what I want to say. Hopefully this problem will pass soon, but I’m really not sure.

I wanted to let you know about this in hopes that it will not affect my participation grade.

Thank you in advance for your understanding.

Hopefully, she will understand. And, hopefully, my participation grade won’t be affected by this. I’ll keep you guys updated and let you know what she says in response to this e-mail.

So far, my college has been incredibly understanding of my TS and I have come across very few problems, if any at all. So I expect that she will be understanding and that her response will be positive!

It’s tough having so little control of my body

Had a rough night over the weekend. I went out to dinner with my friends and then went to their room to hang out, and all night my tics were really rough. It was the first time in about a year or more that I have cried about having TS.

I have a new tic where I say “I hate you.” I was clearly upset by this tic and was having a rough night in the first place, but then this guy who I’m kind of friends with but not close to said, “You should really try to change that tic” in reference to my “I hate you” tic.

This really hit me hard. I’m usually not very sensitive about these kinds of things, but I’ve never had someone suggest that I should try to change a tic. It really made me mad and emotional in general. If I could change the tic or choose not to say a certain thing, then why the heck would I be saying it in the first place?

If I could just choose which tics I could have or not have, then why would I choose to hit myself in the chest and stomach until I was in pain? Why would I choose to shout and make noises in class? Why would I choose to say things like “No” and “I hate you”?

I knew I was going to break down crying in a few minutes, so I quickly said I was going to go back to my room and left. I went back to my room and cried. Then my other friend who I’m very close to came and knocked on my door.

I’m really glad he realized I was upset and came over to talk because I really needed that. He knew something was wrong and asked and I told him. I told him that what the guy said to me hurt. I told him that I can’t just change my tics and that I can’t control it, things he already knew.

I told him how the comment pointed out in an all to poignant way to me how little control I have. He offered to stay with me and talk until I felt better, but I told him I just took some medicine and was going to sleep, but I really just wanted to be alone.

He also offered to go to brunch with me. That I took him up on. All in all, it was an emotional Valentine’s Day, a day where I truly felt the emotional effects having so little control of my body has on me.

Your words are powerful!

A little more than a week ago, I participated in a Missouri TSA event called the teen panel. Basically, it was an event where we had 4 people (including me) who were teens and college students and we talked to the group of younger kids, parents and other teens about our lives with TS, our stories and what has helped and hasn’t helped along the way.

I was nervous because I hadn’t really done anything like this before, but the chair of the TSA really wanted me to do it since I’m a sophomore in college living life successfully and to it’s fullest with TS along for the ride.

I was extra nervous when I saw that the neurologist and postdoctoral fellow who I work with in the Tourette Syndrome lab at the medical school showed up to talk about a study. They are people who I really care about how they think of me and I was so nervous to talk about my TS and associated conditions openly with them in the audience.

They of course already knew about my TS, but I had never talked about it this openly with them around. I thought maybe it would effect how they think about me in the professional setting, but I went on with the panel of course and talked as openly as I could about my life with TS, OCD, Anxiety, Dysgraphia and Dyscalculia.

Both the neurologist and the postdoctoral fellow have Tourette themselves, so I really don’t know what I was worrying so much about! They know what it’s like, they study TS and they have pretty much dedicated heir lives studying TS and treating patients with TS, so really by worrying so much I was being silly.

After the panel was over and we were done speaking, it was proved to me that truly I was worrying for no reason at all! The neurologist who I work with came up to me with the post-doc and gave me a thumbs up. He told me I did a great job and then he said to me, “If there was one person I would bet on to graduate from college and do something with their life, it would be you.”

This made my night beyond belief! To have someone who I look up to and admire so much say this to me was incredible. He is someone who is so successful, he has an MD and and PHD and he told me that he believes ME, even after I spoke openly about my TS and the struggles I have gone though with it.

And on top of all that, I was ticcing A LOT when I was speaking on the panel because I was so nervous. I was even doing my vocal tics and of course my motor tics. I think this was the most I’ve ticced around either of them, and regardless they still said I did a great job and still believe I can do great things.

That one comment has made a difference for me. It has given me more confidence recently and I feel like I’m important. Never underestimate the power of your own words! They have power beyond what you think, so choose your words carefully and don’t hesitate to tell people the things you appreciate about them. :)