Learn about my Ugandan adventure!

Ever since I can remember, I’ve wanted to go to Africa to work with children, to volunteer. When I started attending the Primary Teachers College in the Netherlands four years ago, that dream changed into teaching children in Africa. But there was always this little voice in my head that said, “with my Tourette’s, I will never be able to go to Africa for a long time.” A few weeks, maybe, but not for months.

I was always so envious of people who said they were going away for a few months, or even a year, to experience a new country, a new culture and to volunteer for a good cause. I never thought that could be me. It would be too exhausting, there were too many ‘new things’. I would be out of my comfort zone, without my house, parents, sister and friends. I wouldn’t have the basic things I thought I needed.

Last year I got the opportunity to go to Lira, Northern Uganda, for two weeks, with a Dutch organization called Edukans. It was a trip in which student teachers from the Netherlands and Uganda would work together. That I could do, I thought to myself, it was only two weeks. But being there, it hit me: there is no reason why I can’t do this for months! There is no reason why I couldn’t be happy volunteering and working with children, here, in Northern Uganda. I even realised that there was no reason why I couldn’t live here forever.

So I made a decision. I took a leap of faith and went back to Uganda. This time without a group. It was just me.

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An awkward public encounter

This week is a strange one. I’ve never had a stranger out in public comment about my Tourette’s in my life and then suddenly it happens twice in one week. Craziness. I was getting food and did a facial tic and the server asked me “What was that?” I hadn’t even realized I did a facial tic so I said, “Sorry, what?”

He then said, “That thing you did with your face.” So I told him I had a medical condition. He responded with “Oh, I thought you were upset with me”. I assured him that I wasn’t upset with him and I had tics which were involuntary. I guess he felt kind of awkward and didn’t know what to say next so he said, “Do you cuss people out? Like in me, you, and Irene?” I told him no.

I later looked up the movie and found out it’s not even about Tourette’s. It’s about multiple personality disorder … lol, I just laughed. Definitely an interesting encounter.

Got my mouth splint today!

Got my mouth splint today! I’m excited to finally have something to give me some relief from my jaw clenching tic. My orthodontist explained it as a band-aid for my mouth. I’ll start wearing it every night to give my jaw some relief when I sleep (I clench and grind my teeth even more in my sleep apparently), and if I ever really need to I can wear it for relief during the day, too.

I’ll probably only ever wear it at night or on weekends (even though it’s transparent/clear colored, it’s pretty notifiable). It feels good to have it in because I know my teeth are protected. My dentist told me if I didn’t get the splint, I could end up with permanent damage to my enamel and have to end up getting crowns on most of my teeth.

This is the first tic that has done damage to my body, and while its a tough realization that one of my tics is actually doing real damage, its important I know so that I can take the proper steps to protect myself and my body.

Me, my studies and TS

We caught up with A Level student Ellen to have a chat about all things TS.

How old were you when you got diagnosed with TS and how did you feel about this?

I have had Tourette’s for as long as I can remember, but I was never properly diagnosed until I was about 14. My parents tell me that I used to blink excessively when I was little, which, at the time, they just thought was down to me watching too much television, but I now know to be a tic.

Since I am quite good at suppressing my tics in public I was less sure that what I was doing had an actual name. I was always worried about what people might think if they found out the full extent of my tics and, what with the wide array of problems you find yourself faced with in your teenage years, having people discover that I had Tourettes Syndrome was not top of my priorities list.

Getting properly diagnosed was like a weight off my shoulders. To be able to give it a name and to know that I wasn’t the only one was a relief and it made me feel so much better about myself. I could now think, “Right, OK, this is what I have, and this is how I am going to deal with it”, instead of always worrying about why I was doing what I was doing and how other people might react.

How has school been supportive and in what ways have they helped you?

I first approached my school with the fact that I have Tourettes in the winter of year 11; the year of the dreaded GCSE’s. My parents and I explained how my Tourettes manifest and how high levels of stress affect my ability to suppress my tics in public.

Since the exam period was approaching my teachers and I discussed ways in which my exams could be made as stress-free as possible. Obviously, that time of year can be stressful for anyone, but, with Tourettes thrown in for good measure, I was worried I would struggle to cope.

My school offered me with the ability to do my exams in a separate room, and I could take time out if my tics became really bad. It gave me that extra bit of reassurance to know that I would be able to release my tics as I pleased, free from the inquisitive gazes of anyone else.

What inspired you to want to talk about TS to your sixth form?

I really wanted to raise awareness of what TS actually is and how it manifests in different people. The media often twists the reality so as to make it seem more interesting and attention-grabbing for people who don’t know much about it. I wanted to talk about what having Tourettes really means for people, especially teenagers, and how difficult it can be to deal with it, but also how it changes you as a person and the way you see the world. I was also tired of hiding and, in telling other people about my Tourettes, I felt better about accepting it in myself.

Were you nervous before giving your presentation?

I think nerves are unavoidable in any situation that involves speaking to lots of people. I am a theatre lover, and do love being on the stage, but I did feel a few butterflies. A small number of my close friends have known for a long time that I have Tourettes Syndrome, so it gave me comfort to know that they would be supportive no matter what happened.
What feedback did you get from your friends, do you feel you raised awareness of TS?

One of my main worries was that people would judge me for something that doesn’t define me as a human being. I felt that I was able to show that even though there are people who have Tourettes, it doesn’t make them incapable of being and doing other things. I wanted to be remembered as more than just “that girl with Tourettes” and everyone at school proved that that would not be impossible, which I am so grateful for.

What advice or knowledge would you give to other students who have got TS?

Don’t let it rule you! There is always someone that you can talk to, whether it is a doctor, a teacher, or a family member. If you have any worries about Tourettes or how it is making you live your life, don’t bottle them up inside you. Finding a way to deal with TS is different for everyone, but once you find what suits you, it can make all the difference.

Advice & learning from the Tim Howard NJCTS Leadership Academy

Hi there, my name is Adam and I have Tourette Syndrome. I am a National Tourette Syndrome Youth Ambassador. I know this is a little late, but I want to talk about my experience at the Tim Howard NJCTS Leadership Academy, which took place August 1-3 at Rutgers University. My favorite part of the academy was the amazing feeling I had knowing that the people there knew what I was going through. It’s called empathy. They could feel what I was feeling and I could feel for them, too.

I learned a lot about TS when I was there. I learned about what goes on in the brain when someone tics. I learned about experiences that the coaches have had throughout their life and got to ask them questions about how to handle my experiences. I learned how to organize myself effectively and efficiently during the executive function workshop. I learned about the social aspects of TS, like the benefits of being honest and open when dealing with friends and other relationships.

Lastly, I want to give some advice to the readers of this post. My advice to you, the reader, is to find that thing that you’re so so passionate about. Whether it be soccer or baseball, singing or theater, cooking or politics, doing that thing that you’re passionate about will make you so happy, so proud and confident in yourself, that you never want it to end. Mine is Tourette Syndrome advocacy.

Thank you for reading this, and I hope you find your passion.