I have Tourette Syndrome. It’s my favorite thing… most of the time. I know it can be hard, but more often than not, I’m a fan.
I started ticcing when I was 17 years old, so I have a different story and perspective than most. I was working at our local public library the very first time I did it. I thought it was a hiccup or something. Then it started coming every day. Then multiple times a day.
I wasn’t too concerned. The noises didn’t hurt. My parents were more concerned than I was and sent me to several different doctors trying to figure out what was going on.
I went to several who had no idea what was going on or how to help me. One doctor suggested something might be spasming to make me create noises and gave me muscle relaxant.
I still ticced.
Not that I minded, but my parents were really concerned. I went to the doctors to appease them. I loved them and didn’t want them to worry.
It didn’t help that this all started my senior year of high school. Once I moved away to college and wasn’t around as much, they kind of forgot… until I came home to visit.
I “made noises,” undiagnosed until I was 24 years old.
The story of my diagnosis still makes me mad. I was in college at the time. I had applied to the social work program and been accepted to study and focus on this as my major. It was my second semester in the program when things started to happen.
I had one professor make a comment about my noises, but I brushed it off. I don’t even remember what it was.
Then I was taking a class from the head of the social work program. It was a class about working in individuals, for those wanting to go the therapy route.
He was talking about that beautiful moment when people finally understand the changes they need to be making in their life and this moment is about to change their life forever.
He had created such a moment in the classroom and it was a beautiful and peaceful feeling… when he suddenly turned to me and said, “Do you see why your noises would be a problem here?”
I was so embarrassed. I had no idea what to say, but I wanted the attention off of me, so I said yes to see if he would continue on, which thankfully, he did.
I was upset by this, but figured there really wasn’t anything I could do about it anyways. I couldn’t really stop the noises, and I couldn’t change what he said and did, so I kept going.
A few weeks later, this same professor announced to the class he would be finished grading a paper and for us to come pick it up at his office after a certain time.
When I went in to pick up my paper, he mentioned there were a few things he wanted to discuss with me.
He started speaking of my noises and overall disruptiveness and his concern about being able to place me in an internship. I don’t remember much of the conversation after that.
This was already a particularly rough semester for me. I was taking too many credits while trying to work and be involved with my church and was in a relationship with a guy on the other side of the island, etc. So the idea of not being able to be placed in an internship- also translating to me not graduating as this was a requirement- was the straw that broke the camel’s back.
I quit going to classes (because really, what was the point?) and slowly watched every aspect of my life fall apart. I ended up failing all of my classes and trying to pick up the pieces of my life, including finding a new major.
It was a rough summer, but I finally managed to get my life in some semblance of order and chose a new major. However, the school would not let me register for classes until I had seen the school psychologist to make sure everything was ok and I wouldn’t be failing all my classes again.
Best. Policy. Ever.
Once I explained why I had failed all of my classes, the psychologist was as upset as I was. He even asked me to sign a waiver so he could confront this professor and ask about the situation. Before I left his office, I had an official diagnosis of Tourette Syndrome.
Once the psychologist spoke with the professor, I was told he only wanted me on medication (which for the record is still against the ADA, Americans With Disabilities Act, which allows me to choose my treatment. He doesn’t have a say in it. Ironic considering his profession though, don’t you think?)
It also ended up being a blessing in disguise, because the new major I had chosen was so perfect for things that I needed to learn and put me in a position to publish my book and find much more happiness and fulfillment than I would have had as a social worker.
Tourette’s is not easy. Luckily, having the advantage of age, it didn’t affect me as much as it could have if I had been younger. I was 24 at the time of diagnosis. I was comfortable with who I am.
People knew me and knew I wasn’t trying to be rude and disruptive, as children can often be seen and told.
I hope you haven’t. I hope you have the love and support of people around you.
If you don’t. Please remember they probably just don’t understand.
You are likely still young, but it is up to you to teach people. Even if you aren’t, you have the opportunity to help others. Explaining what is going on is the best way to spread awareness and understanding.
You can’t expect circumstances to change until you do your part.
There have been many studies done on the benefits of service. You have built in opportunities every day of your life to serve others.
You have the unique blessing of also giving others the opportunity to serve and receive those benefits. Let them learn, let them help you.
I think the most important thing to remember- with or without Tourette Syndrome- is to remember all the good things and how to use them. how much you are receiving. When you see all of that, it’s hard not to give back. Giving back is life-changing.
I don’t care how old or young you are. Everyone has something to give. Everyone has something they need. And it’s one of the most beautiful things on earth when two people- one with a need and one with a need to give- come together.
I have been on both sides. I have been the giver. I have been the receiver. It doesn’t matter which side I am on, it always moves me to tears with the power of goodness.
Always choose goodness.
Always choose light.
Always choose love.
Then show others how.
Remember you have more control than you realize. I think one of my biggest struggles was feeling like I had no control over my body or anything in life, really.
I was wrong.
I do have more control that I realized. I have the ability to make choices. I control the way I view the world. I control the way I react to others. I control how I treat others. They are equals. They have no more say in my life than I do in theirs.
I control my dreams. I control my choice to chase those dreams.
Tourette Syndrome has never stopped me from doing anything I wanted to do.I still went on an 18 month service mission for my church. I still graduated from college. I was still fairly “normal” despite lots of noises that became increasingly frequent. They stopped sounding like hiccups, and more like animal noises or singing. Sometimes even speech.
They developed their own personality, so I named them Paula. She was the reason behind mypen name. Paula has been the inspiration to so much that I have been able to accomplish. I always wanted to write and had nothing to write about until she came along.
So in a sense, having Tourette Syndrome actually gave me a purpose and direction. The funny stories she has given me have given me friends and creative stories that weave their way into my writings. I have received so much from this and have lost nothing.
Sure there is a bit of pain when I physically tic, there are doctor bills as a result, but it still hasn’t stood in my way with anything I have wanted to do.
Tourette Syndrome has made me strong, because I chose to build on it.
It has laid a foundation that I grow and strengthen by my daily choices.
And while Tourette Syndrome may make me different, I am no different really from any other human being.
We all have something that makes us different and unique. We all have challenges to overcome and blessings to share.
So choose to build and you will do great things.
Learn from the rough things, then teach others and take control of what you can.
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