Change someone’s life by being a part of a Tourette walk

This is me and a friend of mine at NJ Walks for TS at Mendham in 2011! We hope to see you there in November!

This is me and a friend of mine at NJ Walks for TS at Mendham in 2011! We hope to see you there in November!

Young people these days have been advancing their technology in so many different ways, and I think that it is so important to channel and use technology to learn and research about what is going on in your community. Not many young people realize how big of an impact they can make if they take a few hours, or even minutes, out of their day to read and care about an issue.

When I started to take time out of my day four years ago as a sophomore in high school to channel my energy into learning about Tourette Syndrome, a great event, great friends and great opportunities came out of it. The stories I have heard and the people I have met through the annual NJ Walks For TS at Mendham have touched my life in a way that is indescribable.

Having adults, as well as small children, come up to me and personally thank me, my friends and my family for our efforts and support is a feeling that I would never give back and give everything for more people to experience.

This event has grown throughout the past several years and will continue to grow. Everyone that has become a part of the event — this year’s walk on Saturday, November 23, will be our 4th! — has enriched their lives not only in feeling good about themselves, but also learning about personal experiences of those with TS. Continue reading

Trying to stay optimistic

Hi everyone! I have had a great summer! Now, I am back to school — my final year. I am so excited and yet kind of scared. I can’t wait to venture out on my own and learn/discover new things, but I am afraid of how I’ll survive in the real world.

I want to be an actress/singer, and I don’t know how that will turn out. I hope to discover who I am and live my dreams. I hope to conquer things I never thought I’d overcome. I just need to stay optimistic.

Also, I keep forgetting to take my Zoloft, and I take it after forgetting about it days at a time. I have finally remembered to set my alarm for 8:30 p.m. and to take it every day. How is everyone? I hope you all had a fantabulous weekend!

Professors and teachers actually DO want to understand you!

I just finished meeting with my creative writing professor about my Tourette’s. She is the first professor so far in college that I have talked to personally about Tourette’s and it could not have gone better!

We eased into the subject by first talking about introduction things like some of the things I was looking forward to about the class and some of the changes that had been made to the class this year. Then when I started telling her about my accommodations and about my Tourette’s, it felt like we weren’t strangers.

I was proud of the way I told her about my tics and how Tourette’s would effect my in the classroom. I never faltered, never hesitated and never felt like I was at a loss for words. I gave her the basic explanation, handed her one of my makeshift Tourette’s medical information cards that I made this morning, and then told her about my accommodations and what would help me in class.

She responded so well. She was genuinely curious about my Tourette’s, how it affects me and how it will affect me in class. She was not afraid to ask me questions, which I think is because I appeared to be so comfortable and confident talking about it.

She asked me several questions such as “Are the tics distressing to you?” “If this is OK to ask, what are some of your tics” (because I wasn’t ticcing very much when I met with her), “how long have you had Tourette’s” and other questions. She seemed curious in a kind way, and eager to understand and help me in any way she could in class.

The basics that I found were most important for me to explain to a professor were: Continue reading

Being proactive helps!

So today I decided that I was going to e-mail my professors for next semester about meeting with them before classes start about my Tourette’s and accommodations. I was really nervous just to send out the e-mails, but I did it! And one of my professors already sent a very warm response back!

This is basically the e-mail I sent to my professors:

Hi! My name is Jackie and I am a sophomore at Wash U. I’m excited to be in your class this Fall and I was wondering if there might be a time that I could stop by your office before our first class. I usually like to meet my professors before classes start so that I can introduce myself and tell you a little bit about a condition I have called Tourette’s Syndrome. This helps to avoid any possible confusion on our first day of class and going forward.

I also receive accommodations through disability resources and I can hand you a copy of my accommodations when I come in to meet you. Is there a time I could stop by your office before our first class that would work for you? Please let me know! I’m looking forward to meeting you. Thank you!

And this is the e-mail that one of my professors already sent back:

Dear Jackie,

Thanks for your e-mail and thanks for being pro-active about this! I’ll be meeting with the two TAs from the course (who will be very active with the students, since right now there is 105 in the course!) next Monday at 2 p.m. Can you perhaps come then and meet us? I hope you don’t mind that they’re there; but I think it’s important for them to learn about you as well.

I think the e-mail she sent back was great! I will be meeting with her and the TA’s for the class on Monday. The e-mail was warm in nature and lets me know that she is actually glad I am being proactive about e-mailing her about my Tourette’s, and also lets me know that is actually wants to learn about Tourette’s and how it affects me in class.

Thought this might be helpful for all of you to read since you guys may be dealing with similar back to school things! I will let you know when my other professors respond to the e-mails and I will also let you guys know how my meeting goes with them. I’m super nervous but I think I can do it!

Are emotions real?

Sometimes I feel that my emotions aren’t real. I feel nervous about something or unhappy about something or stressed, but I feel like I try to block that emotion out and not feel it. I think I’m just so used to blocking my emotions about things that it’s actually only rarely that I feel an emotion to its full extent.

In my life, I have had to do so much emotion blocking and distancing myself from a situation that it is almost second nature. I had to distance myself when I was bullied in elementary school about my tics and when after I was diagnosed my parents didn’t really accept or want to believe that I have Tourette’s. I have to distance myself from the stares when I am ticcing, washing my hands for too long in the bathroom, or panicking and having anxiety in a store and am not acting like myself at all.

Distancing myself and blocking my emotions is something I do on a daily basis without even consciously thinking about it. Today, though, is one of those rare days where I cannot distance myself or block out my emotions. I am nervous, scared and worried about going back to college and having to meet new people and be in new classes and have to educate over and over again about my Tourette’s for gosh knows how long.

I am nervous and scared and worried in a real way that I can’t block out. I don’t want to go out of the house today, which is really the opposite of what I am usually like because I am usually always wanting to be on the go or always doing something.

When an emotion like this hits me hard, I feel like I am “stuck” in a way and don’t really want to do much of anything. Even writing this blog post is something I originally didn’t want to do. It feels like someone flipped a switch in my brain and put me in a completely different mental state than I was yesterday.

Yesterday I was so excited about going back to college and seeing my friends and was actually excited about getting to educate about my Tourette’s. I still feel that to some extent, but mostly I feel scared and anxious now.

I wish I could flip the switch back to where I was yesterday, but it’s like I can’t find the switch right now. I know though that this, too, will pass and that probably in a day or two I will find that switch. It will help a lot when I actually move back in with my friends from college and start getting into it.

The worst part of anything for me is the anticipation, and I have to keep that in mind in times like these. The anxiety and emotions that come with anticipation of something that’s coming up is always 100 percent worse than the actual situation itself.

When I’m in the situation, I tend to be fine, but it never feels like it’s going to be that way. I just want someone to rip of the band-aid right now though. I am fed up with the anticipation and the waiting! Four more days, though, until I move back, which feels both like a very long time and a very short time.

On the fast track to recovery!

Today marked the magical 6 weeks since my Deep Brain Stimulation surgery. I can now “officially” lift over 5 pounds and do whatever I like. Can’t believe how much my life has changed in those 6 weeks. I still feel myself slowly getting better each day.

Yesterday was remarkably good… even my therapist mentioned it (whom I’ve been seeing through this all). Yesterday I sat in a chair through almost the whole therapy session. This was unheard of just 6 weeks ago. I drank out of a mug for the first time, I can make myself / the family dinner (Which I accomplished last night.. yummy!), I’m applying for jobs, and I’m on a hockey team now that starts in the winter!!!

I’m still working on walking distance as its still putting me into episodes, but I haven’t had an episode in 5 days! My hair is growing back FAST, and I’m overall just feeling great. Thank you everyone for your thoughts, prayers and good vibes!

Correspondence with my new RA about my Tourette

Hey guys! I sent this message about my Tourette’s to the RA (Residential Adviser) who is a senior at my college and who will be living on my floor next year supervising us crazy sophomores! She seems like she is going to be really nice!

Let me know what you think about the message I sent her. I tried to make it more informal, but that kind of didn’t work out because I talk pretty formally in general — if you can’t tell from the way I right! Guess it was just the way I was raised! No slang in my house! LOL

My name is Jackie, I am a PNP major and a creative writing minor. I love poetry, dogs (I have a golden doodle named Brandy who is super cute!), being a counselor at summer camp for kids in Georgia, and hanging out with friends. My favorite food is either Sushi or Mexican food and I’m in a sorority on campus, AOII. The reason I wanted to send you this message though is to let you know about a condition I have called Tourette’s Syndrome, but first I wanted to let you know a little about myself because having Tourette’s isn’t something I use to describe myself. It’s not something that defines me but it’s something that’s been a big part of my life.

Most of the people on our floor already know me and know about my Tourette’s since we all pretty much lived together last year which is great! But there are also new people on the floor this year. So It’ll be really helpful for you to know about my Tourette’s and what it is since you’re my RA and since at some point a person who doesn’t know me may very well approach you to either make a noise complaint or express concern. I promise you that my tics bother me more than they bother anyone else, and that they are something I can’t control, not something I do to purposely bother other people. So anyway here are some basics! Continue reading

Moment #2: Amazing nurses at camp, an OCD moment

So when I was at Camp Twitch and Shout, I wrote a list of “camp moments” on my phone so that I would remember stories from camp that I wanted to write out on my blog. I haven’t written out a lot of these moments yet because I’ve been waiting until I felt like I wanted to write them out.

For a while there, writing these moments out would probably have made me cry because I missed camp so much! I still miss camp SO MUCH, but I think now writing out these moments won’t make me cry anymore but will make me remember the amazing times I had at camp. I am going to write another one out on this post.

This is another amazing camp moment that made me smile. As counselors, we weren’t supposed to keep any medication in our cabin — and this included Advil. I don’t get headaches a lot, but I sometimes get stress headaches or I sometimes get headaches when I am doing a lot of head tics. So on about the second day, I got a headache and went to the med lodge to get some Advil.

At the med lodge, I told one of the nurses that I had a headache and asked for some Advil. My OCD right now is mainly focused on germs, so I have a problem with anyone touching anything that I am going to eat or swallow. But before I had the chance to tell the nurse this, she touched my Advil and held it out for me to take.

I, of course, didn’t take it from her and explained to her about my OCD. I told her that because of my OCD, I have a problem with people touching my medications. I expected her to give me a strange face or think I was crazy because that’s what would happen in the real world if I were to tell someone about this.

Instead, she gave me a warm smile, told me not to worry about it at all, understood what I was talking about pretty much 100 percent and told me she was going to throw out the Advil that she had touched and get me new ones. I was so amazed by this.

She didn’t even hesitate at all and didn’t give me a strange look even for a second. Most of the nurses at camp have kids with Tourette’s and OCD, so they just understand so well. She poured me two more Advil into a cup without touching it, and I thanked her of course and let her know how much I appreciated it! She then told me to remind her the next time I needed any meds to make sure she didn’t touch it again.

The next time I saw the nurse and needed more Advil, she remembered me and was great about it yet again! She even told me that after I told her about my OCD with the medicine she had been asking other campers if it was okay for her to touch their meds to make sure for the other campers and counselors as well. This made me so happy and made me appreciate where I was even more. What an amazing nurse and person! This kind of thing just doesn’t happen in the real world.

Moment #1: Service dogs at camp, a tic moment

So when I was at Camp Twitch and Shout, I wrote a list of “camp moments” on my phone so that I would remember stories from camp that I wanted to write out on my blog. I haven’t written out a lot of these moments yet because I’ve been waiting until I felt like I wanted to write them out.

For a while there, writing these moments out would probably have made me cry because I missed camp so much! I still miss camp SO MUCH, but I think now writing out these moments won’t make me cry anymore but will make me remember the amazing times I had at camp. I am just going to write out one on this blog post.

So at camp there were a few service dogs. At counselor training, we were told that there were going to be service dogs that a few of the kids were going to bring to help with their tics/Tourette’s. I am a huge dog lover! We were told at counselor training, though, that we were not allowed to pet or touch the service dogs while they are working. This is completely understandable.

I knew I would have to keep an extra distance from the dogs though since my one and only touching tic seems to be associated with dogs and other animals. I’ve always had this thing about NEEDING to touch dogs noses when I’m petting a dog and just in general needing to touch their fur if they are close to me. So I just knew I would need to keep an extra safe distance from the service dogs at camp, and then I would be fine.

I seemed to be doing a really good job with keeping my distance from them, even though it was hard because I love dogs so much! But the second to last day of camp I was talking with some campers and counselors and one of the girls with a service dog came up and started talking with us, too, and stood right next to me with her dog.

I didn’t want to move away as soon as she came to join the group because that would have probably seemed rude, but as she stood there I felt the tic building up in my arm. It just kept getting stronger and stronger pretty quickly and I knew I was going to have to do something soon about the situation.

In any similar situation like this at home, I would have been forced to take myself out of the group. But I was at Tourette’s camp! Why not explain myself I thought? So I spoke up and told her about my touching tic with dogs. I was planning on just telling her and then backing up from the group myself, but she backed up with her dog first.

As soon as she backed up and brought the dog out of arms reach, I relaxed my arm and let my tics go. So my arm jerked out in front of me about 6 or 7 times and then after my tic was done the girl said to me, “Thanks so much for telling me about that. I really appreciate it!” She was so sweet about it and not mad or offended at all. She was just glad I told her and competently understood. That’s a moment that only happens at Camp Twitch and Shout

A note to anyone reading this from Camp Twitch and Shout: No need to worry about this in the future with service dogs! I am always aware when I reach the point at which I just have to let the tic out and will always be able to either tell the person with the dog or step back from the dog.

So there is no need to worry about putting a camper with a service dog in my cabin in the future if you need to because I will not interrupt the service dog from working! The tic does not happen every time I see a dog or am near a dog and when I do feel it coming I will be able to step back so that I don’t end up touching the dog or interfere in any way with the dog’s job.

Dreams can come true

If you would have asked me one year ago, exactly, what dreams I had, I would have told you that I had two major dreams. I never told anyone about the third one, but there were actually three:

  • Going to the Olympics
  • Teaching in Africa
  • Speaking at an international conference about my Tourette (that’s the one I never told anyone about).

And now I can say that I did it. I did all of them — starting exactly one year ago the other day.

Last summer, on August 7, I went to the Olympics and it was better than I could’ve ever imagined. Me and my friend, two HUGE field hockey fans, were able to get tickets for the women’s field hockey finale, just a couple hours before the event, and the Dutch team won. I didn’t even dream about that, it was too far out of reach, I was sure that it would never happen. But it did.

Then this April, as you know, I went to Athens to speak at the ESSTS Training School and they ended up being so impressed that I spoke again, in a room full of BIG doctors and therapists specializing in Tourette. That was literally my wildest dream, and I didn’t believe that it could ever happen. But it did.

And now, this summer, I went to Uganda to teach. I went for two weeks because I figured, with my Tourette, I would never be able to go for a longer time. I wanted to, but because of my Tourette, I thought it just wouldn’t be an option. So I went for two weeks. I didn’t think I could achieve much and I figured it would be a once in a lifetime experience. But I did and it wasn’t. I’ll be back there, and soon. That’s my new dream.

So what I want to say with this blog is that it is possible. If you have a dream, go for it! Yes, I know, you have Tourette and maybe more, but that doesn’t mean that your dreams can’t come true. You have to work for it, it won’t come to you if you just wait.

I had to save up and fight for those Olympic tickets for almost two years. I didn’t get invited to speak in Athens just because my mom suggested it to my therapist; no, I got invited because my therapist knows me and I had proven to her many times that I was capable of speaking at this conference. And I’ve been working for my journey to Uganda for a year now, not just saving up to pay for my trip, but also raising more than $2,400 for the education projects we’ve seen and worked with.

If you have a dream (yes, that one, you know what I mean!): Go for it! I promise you, it will be worth it. It is said best in these lyrics, written by some of my fellow travelers to Uganda:

If you never try you’ll never know

There’s so many things that we can show

See what we can achieve

If we can trust and we believe

Take a leap across the Nile

Even if it takes a while

Life starts

At the end of your comfort zone