2016 NJCTS Youth Scholarship Award Essay: “Me, Myself and Tourettes”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2016 Youth Scholarship Award contest. I hope you enjoy it!

SebastianL

SebastianL

Imagine telling a child with the hiccups to stop making sounds. That child will try his hardest to keep it inside of him, but it gets to a point where your body stops listening to your mind. He doesn’t want to have the hiccups, but it JUST WON’T GO AWAY. That’s exactly what it’s like to have Tourettes Syndrome, except you’re stuck with it for a much longer time.

My parents first noticed subtle things that weren’t really that odd, but I just kept doing over and over again at around the age of six. Every time we ate, I had to have had my fork and knife perfectly aligned with the napkin.

Not really that weird, but to the point where it became annoying since I did it everywhere, not just at home. But once I entered elementary school, things became a little more difficult for me. I couldn’t stop shifting around in my seat and I couldn’t stop moving my long hair out of my face. I became a common target for yelling at because while everyone was sitting doing work, I was sitting on my knees and tapping my pencil. My parents thought they were going to be stuck with a troublesome kid, but it wasn’t quite that.

One day at school, my surfer-dude type haircut was really getting on my nerves. Strands of hair were in front of my eye and I felt as if my sense of touch was off the charts because it felt like I could feel every single piece of hair bother me. So, I got my safety scissors out of my pencil case and gave myself a new haircut. From that day on, I didn’t have bangs that would bother me at school. However, when I got off the bus that day, my mother wasn’t too happy to see a twenty dollar haircut go to waste like that. I explained what happened and it was around this time my mom began to think that these weren’t really traits of a so-called troublemaker kid. So we went to a doctor and they told me I had “nervous tics.” I went along with it, because why would I argue with a doctor right. So from then on, I assumed that I was just some nervous kid for no reason.

Time went on and I entered the middle school where everybody was grown up and cool. By this time, I’ve had a track record of being “that” kid and I just accepted the status I was given and tried to run with it. But this is when my “tics” started to evolve into what is actually known as Tourette’s. I started making noises and making noticeable repetitive movements. One day during math class, my favorite period of the day (sarcasm), I was feeling rather anxious. I made a high pitched noise, kind of like when a girl sees a spider and yells “EEK!” Some heads turned but I just played it off like I always have whenever I did something weird. While the teacher was going on with her lesson, I felt this extreme tension in my throat. This is when I compare it to hiccups, because once it starts, you can’t stop it. I tried really hard to “hold it in” but it just hopped out. Heads turned once more and the teacher gave me a warning, telling me to stop interrupting the class. About a minute later, something in me decided to bother the class once more and I let out another “EEK” like noise. My teacher had enough of my shenanigans by then and yelled at me in front of the whole class and told me to go to the office. I walked out with my head low, confused and sad because I wasn’t able to understand why I was doing these things. I wasn’t nervous at all and I’ve never done something that outward. The principal told me to stop being a bother to people and I tried to be as quiet as possible the remainder of the day. When I got home, all the sadness I was holding in just exploded into tears when my mom asked me how my day was. I explained to her what happened and we went to the doctor once more. They spoke with my mom and told her we should go get an MRI of my very nice brain. They did a bunch of stuff I didn’t get and when we left she hit me with the “nervous tics” phrase again. I’m convinced that she knew it was Tourettes but she didn’t tell me because she didn’t want me to feel bad.

Fast forward and I’ve had plenty of time to learn how to hold in my “tics” while at school and public places and to allow them to come out at home. It’s freshman year in high school and by now I’ve figured out for myself that what I have was probably Tourettes. I asked my mom if we could get some medicine to ease them a little bit but that just made me feel sick all the time. So we went to another doctor who asked my morn if he could talk to me in private, so I could speak honestly about my Tourette’s. He and I spoke about what was going on with me and we had a genuine down to earth conversation. He told me about his friend, who happened to have Tourettes, who also happened to be a heart surgeon. That heart surgeon had the same repetitive noises and movements like I did, but whenever he was going into an operation he became as still as a statue. His whole psyche changed and he was able to do amazing things and save people’s lives. My doctor told me I didn’t need medicine, that the power to control my Tourettes was in me and I just had to hone it like his friend did. I walked away from that visit with a new sense of hope and pride. From that day on, I never let my Tourettes get the better of me and I aimed to make the best me possible. And I’ve never abandoned that mentality to this day.

Despite all the negative things that I was forced to go through, at the end of the day, it made me stronger and I was able to push myself harder than anyone else. Instead of resenting the people who made fun of me, I accepted them and grew to understand why people acted the way they did. With all the time I kept to myself, I thought about things that a child in middle school wouldn’t normally think of, the world, humanity and myself as a person. I also continued to read a lot and it became relatively easy for me to excel in school, always meeting honors. I believe I grew wise beyond my years and rapidly became a person with a wonderful perspective. My Tourette’s created a teen with more love, acceptance, and knowledge than those around me and I am proud of that. And if having Tourette’s was the only way that that could happen, I wouldn’t give it up.

Anxiety over boys … need advice!

Good evening … and the anxiety kicks in. This isn’t 100 percent Tourette’s related, but is very much anxiety related. Soo there’s this one guy I like a lot. Today I invited him over. I’m going to have a few friends over, and him. They all know I like him. One or two of them know I really want to ask him out. And one wants to ask him out for me. SO I have a lot of stress on me.

I am not sure exactly how to tell him I wanna be his girlfriend. How to tell him I have feelings for him. I want to be the bigger person cause usually I’m down to the ground. I wanted to ask him out. Alone. But I’m worried “what if one of my friends walk in while I’m asking him out?” Or “what if I kiss him then they walk in and are all like OOOOOOHHHH?” And the most stressful question is: “What if he says no?”

So I’m not sure who will reply on time, but does anyone have a way I can ask him out with the least anxiety? I’m thinking a note, but I’m not sure.. ’cause that may make me look weak. Anyways, thoughts?

Also, this is starting to make me tic a little. I haven’t ticced that much in the past 3-6 months. But its starting to kick in again. It’s scarring me … does anyone else get more tics when their nervous/anxious?

Finding my voice

I can write a 20-page letter to someone in which I share my deepest secrets and fears. When I write, I can say things that I have never told another soul in my life. If I sit down to talk to another person face to face, you can just forget it. I will sit and stare at that person for hours and not say a word. I don’t understand it. It’s as if my mind freezes up and the words just refuse to come out.

Take the things I have written on this blog for example. I can not imagine saying these things out loud. Possibly, one day, I may just randomly acquire the ability to speak what is on my mind. I have not been able to as of yet.

In fact, I have had to keep journals for therapy and counseling. If it were not for me writing during the time between appointments with the therapists and counselors I have seen, I would not have been able to share any information with them. I have rehearsed conversations in my head before arriving at their offices to prepare myself so that maybe I will find the courage to say the things that I have felt and thought out loud. I have not yet mastered this skill.

My fiancé can confirm this fact. When we first met, I was totally out of my element. We were at my cousins’ house for a housewarming party. I knew most of the people who were present. Most of them were people I had not seen or talked to in years, though. I definitely had not seen them or talked to them since my Tourette’s had become so prominent, and I am sure most of them did not even know that I had been diagnosed with Tourette’s. I know they definitely did not know of the other things I had dealt with over the last several years.

Meeting new people makes me nervous and anxious. So, when my fiancé introduced himself, I was quite backward and seemed very indifferent to him. I was in a fairly large group of people. I was loud and twitchy and just wanted to get somewhere I could let my tics out in full force and be completely comfortable with myself. I try to put on an air of not caring what people think and perceive of me, but I think that if we are all truly and completely honest with ourselves, we all care at least a small bit at times. Perhaps not all the time, but we all find ourselves feeling self-conscious at times.

I have always been terrified of showing my feelings. I guess I am really afraid of being hurt by reactions to what I feel.

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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. 🙂

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.

A little understanding goes a long way

This weekend, one of my closest friends (who I will call Gally for this blog) had her roommate/close friend from college visit her. Our plan for Friday was to go see The Bling Ring together and our plan Saturday was to go to the City Museum.

I was nervous about meeting the roommate because I always tend to be a little nervous when meeting someone new. When meeting a friend of a friend there is always the issue of, “Did my friend give this person a heads up that I have Tourette’s?” and “How is this new person going to react to my noises and twitches?” So I tend to worry at least to some extent when meeting someone new who may or may not already know that I have Tourette’s.

I met Gally’s roommate (who I will call Bunny) for the first time in person Friday night. Before the movie, we met briefly and then walked in and sat down. My first impression of her was that she seemed really nice, and she didn’t seem like the kind of person who would give me any trouble about my tics.

Gally sat between me and Bunny during the movie, and of course Gally is very used to my tics, so during the movie my tics didn’t bother her. I did some vocal tics and a fair amount of motor tics during the movie, but Bunny didn’t react at all. I wondered if this was because Gally told her about my tics in advance or because maybe she couldn’t see/hear my tics from where she was sitting. Either way, the movie went smoothly.

After the movie, we talked a little bit in the lobby, and when I did my vocal tics it didn’t seem to phase Gally’s roommate at all. She didn’t give me any weird looks or react in the slightest to even my louder tics, which is pretty impressive because most people — even when given a heads up about my tics — will react to some extent even if its just a startle response.

I was doing more pretty decently loud vocal tics in the parking lot when Gally and her roommate walked me to my car, and still no reaction from Bunny! She just had a really comforting way of looking at you and making you feel like you don’t have to worry or be self-conscious.

So I didn’t feel worried about my tics at all around her, even though I had just met her and even though we had never personally had a conversation about my TS. Also part of it was that Gally was there making me feel conformable as well, which of course helped!

The next day, I hung out with Gally and her roommate again because we had plans to get a group of friends together and go to the City Museum. On the way to the City Museum, in the car I mentioned something about camp. Gally’s roommate asked me about camp and asked what camp I was going to be a counselor at.

I enthusiastically told her I am going to be a counselor at Camp Twitch and Shout, a camp for kids with Tourette’s. She then said, “Cool! I actually got these earrings from an old boyfriend who had Tourettte’s. He kind of grew out of his tics, though.”

Gally and I kind of started laughing a bit, and Gally responded with, “Cool story, hahaha.” Anyway, Its always nice to hear that someone has known someone with TS before knowing me! Makes me feel like I am not the only one who has to go though this and also makes the person more used to TS and gives them to background knowledge about it, which helps them better understand me when they meet me. 🙂

Athens Day 1: I’ve arrived!

LauraAthens1It’s now almost 8 p.m., Athens time, and I’ve just arrived in the hotel where I will be staying for the next 6 nights. It’s been a long day (12 hours of traveling), but I like the hotel, and when we (my sister and I) came out of the subway station, we got our first glimpse of the Acropolis (above)!

All the sights are real close together (even more so than I thought), so we’ll probably walk to the conference every day.

The hotel we’re staying at seems nice and professional, while the streets are, well, quite dirty! That’s what I thought before, so all I really care about is the hotel.

I just hung up all my dresses and laid down the flashcards for my speeches. Tomorrow is the big day! First, around 2 p.m., I’ll speak about what Tourette is (in symptoms) to me, in my daily life. That’s the speech about co-morbidity. And then, later that afternoon I’ll close the day with my speech about teaching children how to live with Tourette (and more).

I’ve got to say, I’m quite calm now, I don’t know how that’s going to be tomorrow. But if I manage to stay calm until the speech, I’ll be fine, because I know I will be calm when I’m up there (I mean, I’m a teacher, that’s my job!).

For now it’s showering, eating and sleeping! Bring it on!

Heading to Athens tomorrow!

Dear destinyOne more day. Then I leave for Athens. Over the past few days, I’ve gotten more and more nervous. On Friday, I started to really practice my speeches, which only made me more nervous because my English wasn’t that fluent as I thought it was.

Later, when I tried again, it turned out that all I had to do was just find the right words. So, logically, everything is going to be alright! Well, my tics and anxiety disagree, but I’m just gonna go for it!

The thing is, the only aspect I’m REAL nervous for is this: If everything goes according to plan, I can influence the lives of a lot of children. That’s my dream, that’s my plan in life, that’s what I really want to do. And I’m going to do it. I’ve been reading some quotes:

Anything I’ve done that was ultimately worthwhile initially scared me to death.

If your dreams don’t scare you, they aren’t big enough.

So, yes, I’m scared. But that’s OK. Let’s go, I’m ready. I’ll be blogging throughout my time in Athens, so be sure to check here every day! You can also follow me on Twitter @iLaura_B and @Touretteprobs.

My college roommate got back to me!

My roommate got back to me! She sent me two really long messages! She explained that she was out of town and out of the country, and that she had limited internet and cell phone access!!! Yay, I’m so glad she wasn’t just ignoring me all this time!

She seems soooo nice! I think we will be friends!  I still haven’t told her about my Tourette Syndrome because I’m afraid it will freak her out if I tell her before we meet in person. But I will tell her when I meet her in person on Thursday. I will let you guys know how it goes! 🙂

For now, I’m a bundle of nerves, excitement, stress and tics. Oh joy. Pre-orientation started two days ago (Sunday), and regular orientation starts on Thursday. Then classes start the 28th. I get to see my puppy in about a week, too! Soooo excited about that!

I also got to meet Lazlo (the dog who lives in my dorm) and the faculty member that owns him. Lazlo is an adorable, very ball-focused, 2-year-old golden retriever. I’m glad I won’t be completely dog-deprived this coming year. I’ve been so dog-deprived this summer without a dog. I miss having a dog so much! Dogs really help me calm down and relax, I can tell you that much.

Well I don’t know if I’ll have time to blog during my regular orientation, but we’ll see. Oh, and I also am going to keep working in the neuroimaging lab that I’ve been working in this summer at the Washington University (St. Louis) Medical School. I’ve been working mainly on the Tourette Syndrome studies and New Tic studies, but I’ve also done some anatomy tracing and work with the brain, specifically the thalamus.

I’m taking about 4 weeks off to get adjusted to college and then I will start working once or twice a week in the neuroimaging lab. Everyone is fantastically flexible there and just fantastic in general. Dr. G, the neuro-researcher with TS, is still a huge mentor for me, and Dr. B, another neuro-researcher, is becoming another mentor to me as well.

Also I finished my OCD-intensive program the other day. I am so proud with all the work I did. I will now confidently be able to do laundry and take showers efficiently without ritualising so much, and that is a huge accomplishment for me and is going to be a huge time saver as well.

I never thought I would be able to make this much progress, and my therapists at the program have told me many times that they are so proud of me and the progress I have made. Things are going so well in terms of this!! 🙂

COLLEGE WEEK: Gaining the support of “Goldie,” my RA

Recently I decided to tell my RA about my OCD and Tourette Syndrome over Facebook. I decided to tell her before I move into my dorm and before college starts for a lot of different reasons:

  1. I got access to my dorm building and dorm room in order to do my OCD exposure therapy, and I kept getting afraid to go into the dorm building because of the fact that I might run into one of my RAs. If I’ve learned one major thing from all my exposure therapy, it would be that if you’re afraid of something, then just do the thing you are afraid of and it won’t be a problem anymore. I was afraid that my RA would see me in the hall and question why I was there and then I would have to explain about my OCD. So I messaged her, gave her a heads up about my OCD and why I would be in the dorm early. Problem solved. No more fear or embarrassment about going into my dorm early to do exposure therapy.
  2. I am living in the dorm room next to my RA’s room and wanted to give my RA a heads up about my Tourette because my vocal tics seem to be getting louder and more prominent. Now that it’s getting closer to the time I move into my dorm for college, I’m stressed and excited and nervous — which makes for more tics, of course. I was afraid that if I started college, moved into the dorm and didn’t tell her about my Tourette, then she would hear my tics from her room, come into my room incredibly annoyed and yell at me to be quiet because she would think I was fooling around or being silly. I didn’t want this to happen, and just thinking about it made my tics worse.
  3. Well, you all know how nervous I am about my dorm situation if you read my last post about my roommate and how she has no idea I have Tourette because she won’t respond to any of my messages. I’m so nervous that my roommate will hate me, or already has made some judgment about me, or something like that. With all these nerves, I just felt like I needed someone who I knew was going to be on my side next year to understand me and support me. Even if my roommate is a wonderful person, I felt like I needed someone to tell me they are going to accept and be OK with my Tourette in college even if I do have loud vocal tics sometimes. I needed to hear that someone was going to be there for me, and that’s exactly what I got.

Here is the message I sent to my RA: Continue reading