2015 NJCTS Youth Scholarship Award Essay: “Pushing Through”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2015 Children’s Scholarship Award contest. I hope you enjoy it!

Meghan Ward photo

I was diagnosed with Tourette Syndrome at seven. At the time, my brother was the one who had been diagnosed with Tourette, and he was having a difficult time coping with it. While we were following up with the doctor, my mother asked what my chances were of being diagnosed as well. The doctor said that, while I was sitting in my mother’s lap, “your daughter is ticcing right now”. Due the experience I had with my brother, I understood what was being said and did not have a bad reaction to being told I had Tourette. I, in turn, asked “if I was like Justin” and that I was happy Justin wasn’t alone. Dealing with my Tourette has been easier for me as I am on the more mild side of the spectrum.

In order to understand what my brother and I were dealing with, my family became more involved in the TS community. We were able to learn more about the disorder and about how it passes down genetically from the father. Being diagnosed with Tourette has brought closer together and we became more involved with the TS community. We would go to a camp that had other kids, just like us, who could learn more about each other and how TS had affected us differently. By going to this camp, it helped me realize that I wasn’t the only one who was different and that even celebrities could have disabilities and overcome the obstacles. The kids at the camp were taught to recognize our tics and became more aware of them in others.

Tourette has affected my school life both academically and socially. I’ve always had trouble concentrating in school. Knowing I have Tourette has helped me understand why I do the things I do and why I have difficulty staying still in my seat which made me focus on myself rather than the teachers. It has also made me more aware as well as defensive towards stereotypical remarks. I believe now that i am less likely to judge people by their mannerisms as I had been before.

A contribution my family was able to make to the TS community was being featured on a news program regarding Tourette Syndrome. By doing this news segment, we were able to help make people aware of the disorder, how it affects the child diagnosed, and the child’s family. This made me hopeful that people would be able to put a face to the syndrome.

Overall, being diagnosed with Tourette Syndrome has had positive and negative effects on my life. It has made me the person I am today; more aware of others disabilities and helping others who are in the same situation as I am. I have even volunteered on the First Aid Squad for my town. Tourette Syndrome is a part of my life and it makes me who I am.

Being rejected by someone else with Tourette

I haven’t written about this on my blog yet, because truthfully I was unable to. It was a year ago that it happened, but I haven’t felt secure enough to write about it until now. It’s been a full year though and I feel like I have enough distance from it now and strength to not let it hurt me anymore.

A year ago, I was a sophmore in college who had come back to school after my first summer as a counselor at Camp Twitch and Shout. I felt empowered because I had made a difference in children’s lives who had gone though what I had, and I felt accepted and loved after being welcomed into the camp twitch and shout family. Coming back to school I was more confident, but still fragile. Other people still greatly affected how I felt about myself.

I joined a new student group on campus and opened up to them about how I was involved in the Missouri Tourette’s Syndrome Association. I didn’t tell them that I had Tourette’s, but I ticced enough that it was probably obvious. After one of the meetings, another girl in the club who was a year older than me came up to me and told me that she was a Tourette’s Syndrome Youth Ambassador and when I asked how she got involved, she told me that she had Tourette’s. I was so excited!

I told her I have TS, too, and that I wished I could have been a youth ambassador but I was too old when I found out about the program. Even though I recognized her as one of the people who interviewed during sorority recruitment for a sorority that I was rejected from and even though the people during recruitment from that particular sorority were not very kind to me, I was still excited.

She was the first (and still the only) person on campus I had met who also had TS. I saw the potential of having a friend on campus who truly understood what I was going through, who was older, and who I could look up to. I saw the potential of having someone on campus that I could have a strong relationship similar to the relationships I had made at camp. Of course I had amazing friends at school already, but the potential of having a friend on campus who also knew what it was really like to have TS was something that I felt could be really special.

I started telling her about myself and about camp and after about a minute she became very standoffish and distant. I was being nothing but kind and warm to her after she had opened up to me, and I was confused. After only a minute or two of me opening up to her, she suddenly said she had to go and walked away. Had I said something wrong?

Now that I had opened my mouth, did she think for some reason that I was just a really lame person who she didn’t want to be friends with? No, I thought. I tried to reassure myself that she must have really needed to go. She probably needed to study or meet up with someone. I tried to convince myself it had nothing to do with me, but after being rejected by so many people in my past because I was different, it was hard for me to truly convince myself of this. Deep down I thought it was something I had said, something that gave me away to be a nerd or someone who was not as “cool” as she is.

Later on, I decided to send her a message.

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Top TS moments from the Camp Twitch & Shout counselor reunion, No. 1

These are not in any particular order! I just wrote them down as I thought of them. These are the top 5 moments that relate to Tourette’s that happened during the Camp Twitch and Shout counselor reunion weekend. Here’s No. 1:

At the end of the trip last Sunday, I was scheduled to fly back home. My plane was canceled, though, because of the weather. Luckily, though, the airport I flew into to make my connection is where Tasha lives! This meant that my trip got to be extended and that I got to spend more time with Tasha.

My anxiety went crazy, though, with having the flight canceled. When my flight was canceled and when I was alone in the airport before Tasha came to pick me up, I was shaking, having major obsessive thoughts and panicking. My anxiety is pretty irrational, but it takes over my body and mind when it hits, and it can be pretty brutal.

I called my mom and cried, but as soon as Tasha came to pick me up I calmed down pretty much immediately. I feel safe with her. So ultimately, even though I had some bad anxiety and got pretty upset, I got to spend more 1-on-1 time with her.

It was like a big sleepover! I went back with her to her apartment and she introduced me to her dog. Her dog is a Chihuahua-Dachshund mix and is so sweet! She is such a lap dog and will sit in your lap and sleep with you. She has such a personality and loves to play, too! She also understands English and listens to her owner better than any other dog I’ve met.

So we went out to dinner to a really nice restaurant talked and then when we got back we laid in bed and watched two great movies together, “Untraceable” and “The Butterfly Effect.” Kind of like how I let Tasha do my nails, even though it bothered my sensory processing disorder, she watched two semi-scary movies with me even though it bothered her OCD and anxiety.

The movies were psychological thriller movies, which are pretty much my favorite types of movies, and she really liked them even though they were scary and wanted to share them with me. We had a great time watching the movies together. Afterward she was a little scared, but she said because I was there with her she was OK.

My flight wasn’t scheduled to leave until 10 p.m. on Monday night, so that meant we got to spend the whole day together the next day, too. We slept in late, ate lunch and then watched the movie “Date Night.” Then we had dinner where we talked more, too, and had more good conversations!

She drove me to the airport and we hugged and said goodbye! She told me that she really enjoyed our time together. I often worry and obsess about what other people think of me, but when I’m with Tasha and the other counselors from camp I know they accept me — always.

I don’t have to worry that they think I’m weird or that they don’t accept my differences. They know my differences personally because they live with them every day. To them, stomping your feet on the ground, twitching your face, hitting yourself and making noises is normal. To them, going into panic/anxiety mode because your flight was canceled or having to avoid touching certain things because you think touching them will make you sick is normal.

It’s incredible to be understood on this level. Being at camp and being with the people from camp is the most understood I have ever felt in my life. I feel like they are all living my life. Even though we don’t have the same tics, same obsessions or same things that trigger our anxiety, it doesn’t matter — we get it, and we get each other.

That’s my complete list! In case you missed any of the others, here they are:

Top TS moments from the Camp Twitch & Shout counselor reunion, No. 2

These are not in any particular order! I just wrote them down as I thought of them. These are the top 5 moments that relate to Tourette’s that happened during the Camp Twitch and Shout counselor reunion weekend. Here’s No. 2:

Another highlight of my trip was spending time with my co-counselor from camp. Two of my co-counselors from my cabin ended up coming on the trip, and I love both of them! The one that I am especially close to is the one who has Tourette’s — I’ll give her the pen name of Tasha for my blog.

Tasha’s tics aren’t very noticeable, but they’re there. She also has bad anxiety and OCD like me. Tasha and I had the best conversations together that weekend! Of course, we had great regular conversations talking about things like our dogs, things we did as little kids that got us in trouble, and talking about boys or jobs or school — but we also had a lot of great conversations about Tourette’s, OCD and anxiety.

What I love is that we talk about it like it’s so normal, like we’re talking about anything else that’s a part of our life. We talk about it like it’s normal because it’s normal for us. I feel like I have so much in common with her, and she is certainly the closest thing I’ve had to an big sister.

I told her about my OCD and how I’m so embarrassed by it. She is the only person who is not a therapist who I have told specifics to about my OCD, and I told her this. She asked why, and I told her that it’s because it just feels so embarrassing for me.

Her response was she doesn’t think it’s embarrassing because she has such similar things. That really made me feel comfortable. I feel so comfortable around her and tell her things about myself that I never ever tell other people. She is also an incredibly open person and shared so much about her tics, OCD and anxiety with me over the course of the weekend.

And, of course, when I tic she treats it like its 100 percent normal because ticcing is so normal for her. We bonded even more than we had previously bonded at camp as co-counselors, and she told me many times that she was so glad I came. We got to spend a lot of 1-on-1 time together since we got to hang out at the airport together during my layover and since we got to ride on the second plane together.

When we were at the airport, she painted my nails. I never let anyone paint my nails because of my sensory issues, but I wanted her to paint my nails, so I put up with the bad smell of the nail polish and the initial discomfort of the polish on my nails. I felt like this was special.

Look for No. 1 tomorrow! And in case you missed them — here is No. 5, here is No. 4 and here is No. 3!

Top TS moments from the Camp Twitch & Shout counselor reunion, No. 3

These are not in any particular order! I just wrote them down as I thought of them. These are the top 5 moments that relate to Tourette’s that happened during the Camp Twitch and Shout counselor reunion weekend. Here’s No. 3:

On the last day, when we were getting ready to leave, I was doing my stomping tic a lot. The same person who comments after my “No” tic asked me if I live in the dorms in college. I told her that I do and described how I live in a suite with three of my closest friends in college.

Then she asked if I live on the second floor. I said I do. She then said, “I was asking because of that tic (she was referring to my stomping tic)” and then said something like I must be friends with the people who live under me. I told her I actually don’t know the people who live under me!

The stomping tic was more frequent on the trip than it really has ever been at school. It will be interesting to see what happens if the tic will stick around and be as frequent when I go back to school.

Anyway, the reason this is No. 3 is because she was curious about my tic and how it affected me at school, and she just asked me so casually — which is something that may seem so small to other people, but in reality it is not for me!

My friends from school or other people hardly ever do this. If they are curious about my tics or any other things that relate to my Tourette’s, they are too worried that asking would offend me somehow — even though I tell people to ask me questions if they want to know anything.

I wish people in the regular world were able to just ask me when they are curious about my Tourette’s. It makes me so much more relaxed when other people are able to ask questions, it makes me feel like it’s not this huge elephant in the room.

After the grocery store, we went back to the hotel/suite and we all ate a home-cooked meal together at the table like a family. It was so sweet and special. 🙂

Look for No. 2 tomorrow! And in case you missed them, here is No. 5 and here is No. 4.

Top TS moments from the Camp Twitch & Shout counselor reunion, No. 4

These are not in any particular order! I just wrote them down as I thought of them. These are the top 5 moments that relate to Tourette’s that happened during the Camp Twitch and Shout counselor reunion weekend. Here’s No. 4:

On Saturday night, the same counselor who would respond to my “No” tic decided to make dinner for all of us since she likes to cook. So we all went to the grocery store to get the ingredients. On the way to the grocery store, the music in the car accidentally got turned up really loud.

One of the other counselors we were with who does have Tourette’s is very sensitive to loud noise because it always sets his tics off. So as soon as the music got turned up, he started ticcing pretty severely. When we parked in the grocery store parking lot he was still ticcing a lot, so we waited a few minutes before going in.

He started to insist that we not wait in the car for him, though, so we went in together and he was still ticcing a lot. It was so sweet how one of the other counselors (the one who does not have Tourette’s and who would make light of my “No” tic) said “Tell me what I can do” to him to try to help in any way she could.

She is so incredibly caring. She doesn’t have Tourette’s, had no idea what Tourette’s even was before she came to camp 5 years ago, and she is such a strong Tourette’s advocate. She has two bumper stickers on the back of her car, one says “Tourette’s Syndrome Awareness” and the other says “Camp Twitch and Shout,” and she even has a Tourette’s tattoo.

Anyway, back to the story… when we went into the grocery store, the other counselor was still ticcing badly, which made me start ticcing badly, too. The other people in the grocery store didn’t say anything, but both of us were going up and down the isles jerking and making noises like crazy!

I was doing a high-pitched noise that kind of sounds like a squeak or something like that while at the same time stomping my foot on the ground really hard. They could probably tell I was nervous about being in the grocery store, so two of them — the guy who was originally ticcing and the girl who makes comments after my “No” tic — made me feel better by saying that I looked like I was throwing the most adorable little temper tantrum and that my tics were so cute.

I would usually be so nervous ticcing this much in a grocery store, but surrounded by these amazing people from camp I felt so safe and accepted.

Look for No. 3 tomorrow! And in case you missed it, here is No. 5.

Top TS moments from the Camp Twitch & Shout counselor reunion, No. 5

These are not in any particular order! I just wrote them down as I thought of them. These are the top 5 moments that relate to Tourette’s that happened during the Camp Twitch and Shout counselor reunion weekend. Here’s No. 5:

I have a tic where I say the word “No” forcefully. My friends at college usually just ignore my tics, which sometimes I certainty like, but other times I like it when people joke with me about my tics. So on the reunion one of my fellow counselors at camp who does not have Tourette’s herself and who is super sweet and who I got to know a lot better this weekend, would say something funny to make light of the situation when I did my “No” tic.

I loved this! It took all the pressure off and let me know that she accepted me tics and all. A lot of times, my “No” tic comes at funny times — like right after someone asks a question or right after someone says something, so it sounds like I’m disagreeing with them very strongly! In reality, though, it’s just a tic!

The first time I did my “No” tic around her it came at a funny moment in the conversation. In response, she laughed and exclaimed “I love Tourette’s” Then many other times she would say “Yes!” right after I did the tic or say something else like “But we do have to turn this way!” This made me feel really comfortable around her because not only did I know she accepted me for who I am, but I also got a kick out of the fact that my “No” tic was amusing to her.

Look for No. 4 tomorrow!

Focus on the people who truly care about you

Well the girl I met on campus who also has TS hasn’t messaged me back. I don’t think she will, which is a little disappointing just because it would have been really neat to get to know her better. She seems like a really neat person, but I just don’t think she is interested in getting to know me better right now. Oh well.

I have my camp family and my cousin, and that’s more than enough for me. I will see my camp friends very soon — in less than two months, which is so exciting! To know that they are here for me is always the best and to know that I will have an amazing time at camp next year, too, with my cousin there as well is something I am really looking forward to!

Maybe sometime the girl I met on campus will talk more with me later, or maybe we somehow will get to know each other better … maybe she just needs to think about it for a little while. I don’t know what she’s thinking or why she isn’t wanting to be open/why she doesn’t want to respond to my message, but I am going to try to let it go — which is hard because of my OCD, but I am really going to try to.

I have people in my life who love and care about me, I have amazing friends who care about me, too. I just have to think about them and things will be alright.

Poetry: “Not Letting Her Go”

Hey guys! Here is a new poem I wrote for my poetry class about Tourette’s. The first part of the poem is based on and about when I was holding a young girl’s hand at Camp Twitch and Shout who also had Tourette’s and I felt like I was holding the hand of a younger version of myself. The second part of the poem is based on a video I have of myself ticcing in dance class from when I was little:

Passing by the gates of the pool her hand was in mine

squirming like a wet fish.

She bounced as she walked,

her bare feet playing games with the freshly

cut grass that smelled like broken avocados

and dusted peanut shells to me.

She tapped her fingers against my palm like a song

and I held her hand tight so she wouldn’t run.

It was my first time holding a hand so small

a hand so much like my own and

I didn’t want to let her go.

She didn’t know my fear yet.

She didn’t know the fear

burning blue like sulfur flames

pulling air from my lungs,

the fear that suffocates.

I didn’t want to let her go.

It would come later, this knowing,

later when she watched the videos

that her mother had filmed of her in dance class

wearing the pink leotard, the black tutu.

Standing in the line with the other girls,

they would be singing and blowing kisses,

spinning in fluid motions like little pink

wind up dolls in painted music boxes

and she would be trying,

trying to be that little pink wind up doll too.

But she would be interrupted,

interrupted by her own eyes that couldn’t help

opening and closing,

opening and closing.

Interrupted by her hands that were no longer

gracefully rising and falling

but instead had found their way up to her face

on their own,

instead were hitting themselves against her cheeks

and her mouth

and her tongue.

She would taste the salt of her hands

unexpectedly.

Her palms would taste sour like grapes

picked off the vine, still small and green.

Her lips would pucker from the taste

and she would wonder

why she couldn’t keep dancing

why she couldn’t be that wind up doll in the music box.

Then her legs would tighten,

she would fall,

unwillingly,

crumple beneath the weight of her moving body

and the other girls, they would look

and she would feel

ashamed.

Improving a relationship I’ve always wanted

I am feeling really good right now for a number of reasons. First, I am finished with all my midterms for now. I had about five major midterms last week and finished them all on Thursday. Then I got to come home on Thursday night since it’s fall break and I got to spend three days at home with my parents, my dog and my brother. It was such a nice break from all the stress of college life.

Most of all, though, I am very happy right now because my grandma made my night earlier tonight. As those of you who follow my posts know, my cousin who is my age and who also has Tourette’s, OCD and its other various co-occurring conditions was in the hospital for three days last week. She came back home five days ago and the day she came home my grandma told me she sounded good over the telephone but I was still not convinced.

I was really worried about her, even though I knew she was home. I was worried she would go back to the hospital and wouldn’t be able to stay home. I was almost waiting from a text from my grandma or a post on Facebook from her brother saying she was back in the hospital. I was worried she wouldn’t recover and that things would just go downhill from here.

My grandma texted me last night, though, and her text gave me so much hope! I have been trying to reach out to my cousin and connect with her on a stronger level ever since I found out we both have a Tourette’s + (Tourette’s and all the co-occurring conditions that come with it) diagnosis.

I thought of how amazing it was that there was someone else in my family who was my exact same age and also has Tourette’s +. I thought how neat that we both are going through similar things and how great it would be if we could have a strong relationship and really be there for each other.

I had been alone for so long with my struggles, had had no one to talk to about what I was going through, and felt like no one understood me. I thought if she felt anywhere near the same way that I did that she would want to have someone to talk to and confide in as much as I did.

It would have meant so much to me to have someone like that in my life when I felt like no one around me could understand. It didn’t quite work out though. I’m not sure why. Continue reading