Life with Tourette can be noisy

For those of you who don’t feel like taking the energy of a click to read a blog sometimes, trust me, I’ve been there, too.

Yesterday, I went to the bank to deposit the money I earned from my job as an usher at opera theater. I actually earned quite a bit of money working there, which is always nice. But that did mean that it would take a little longer for the teller to deposit everything in my checking account. As she was entering in the numbers on the computer, I started doing one of my tics without even realizing it.

When I’m next to a counter, I will usually start banging my knee up against the counter. I do it so often that I don’t even realize when I’m doing it. I’m not sure how long I had been doing that tic, but the teller next to the one who was helping me said, “Does anyone hear that banging?? Or is it just me?” The teller who was helping me replied with, “I hear it. It’s loud.” The man next to me even chimed in, too, saying that he was hearing it, too.

I was trying to figure out what the banging noise was when I suddenly realized it was me again. Note to self: Check what I am doing when people around me comment on unusual noises.

I immediately stepped back from the counter so that my knee would stop banging into it, and after I had stopped, the tellers agreed that the people upstairs must have been having a wild party or racing. This kind of thing really does tend to happen to me too often. That’s life with Tourette for ya.

Anger: Fighting the feeling

Hello everyone. It is very rainy where I am. Last night, I saw the movie “Brave” with my friends and family, and it was so awesome!!!! I loved it! I am proud to be part Scottish. My tics were OK until last night after the movie, when I had a complete breakdown.

I forgot my Zoloft the night before, and my heartstrings are being pulled in two different directions and it’s getting very hard. But, I knew it would be. I had a feeling I would become super depressed, angry and sad.

You know about my agitation where I need to hit things? That’s what I had the urge to do last night. And I was so tired of it that I fought it. I ticced and it was hard to contain it, but I didn’t want to deal with hurting myself anymore. I succeeded, and today, I don’t feel easily agitated at all. Well, I hope you all are having a sunny day. 🙂

A spot of poetry

Hello all 🙂 I found this poem that I wrote not too long ago about my Tourette Syndrome. Having dabbled in poetry at school, I always wanted to express some of the trials and tribulations TS can bring, and this has been my only completed poem about it.

Twitch

I live on edge, each noise can kill.

This fight or flight response to life,

A tiring way to live each day –

Each muscle always hypertense.

My eyes grow wide, I lock my jaw.

I hold my breath and try to smile,

’cause I’m OK. I am. I think?

Except I feel my belly’s tight.

As tension starts to climb my spine.

It steals my breath, my shoulders lift.

I clench my fists, ignore the stress.

My chest is tight, my lungs are clogged.

Twinges confuse, my thoughts conflict –

Focus or flake? Give in and scream?

As thoughts all fail and tension builds,

I disappear through melted brain.

I must distract myself right now…

No! This distracts – where was I? Now,

Just focus on whatever I can.

And yet my thoughts will deviate.

I’m over took and all sense fails,

My way out known – but is it safe?

For thinking’s sake I find the key.

I take the pill and I escape..

It’s not the deepest poem or one that’s been masterly crafted, but hey ho 🙂

First day of OCD-intensive program

Recently, I had my first official day of my OCD-intensive program at the Behavioral Medicine Institute. I missed the group part, unfortunately, because I didn’t know where it was held and it only lasted five minutes as a check-in for some reason. Now I know where the group meets, though, and i’ll be sure to be there for the group part next time. Maybe it will be a bit longer then because people will be introducing themselves.

So I went to a private room and waited for a therapist to come greet me. The way it works is there are three therapists in charge of six patients who are there from the 10 a.m. to noon slot. Each therapist is supervising two patients for the day, and they go back and forth between us.

Then we also have a few meetings a week with our primary therapist — the person who formulates our treatment goals and talks with us about our treatment plans and progress. Basically, the program is where we do the work (exposure and response prevention), and we do the talking with our primary therapist.

While I was waiting for the therapist to come greet me, I was greeted by a very friendly girl who looked to be a few years older than me. She poked her head in the room, asked me if I was new and then enthusiastically introduced herself.  She then said, “You look scared. Don’t be! The first week is just orientation stuff, and everyone is really great.” This made me feel so much better and made me feel welcome as well.

I met one of the therapists, and she went in and out of the room while I was working on the worksheets she gave me. One worksheet was on my long-term goals and treatment goals, and another was on how my OCD  affects me now and will effect me in the future (such as one year, five years, 20 years).

The therapist was nice, my tics were very low and I didn’t have to do anything challenging just yet. A good first day. Hopefully I will like the group next time when I meet them, and hopefully it won’t get too challenging just yet!

What is a dad?

A dad is someone who

wants to catch you before you fall

but instead picks you up,

brushes you off,

and lets you try again.

A dad is someone who

wants to keep you from making mistakes

but instead lets you find your own way,

even though his heart breaks in silence

when you get hurt.

A dad is someone who

holds you when you cry,

scolds you when you break the rules,

shines with pride when you succeed,

and has faith in you even when you fail…

~ Unknown

A dad is amazing and no matter what I still love him.

HAPPY FATHER’S DAY!!!!

Registration opens for 3rd annual New Jersey Walks for TS event

The New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) is proud to announce that registration for the 3rd annual New Jersey Walks for TS event at Borough Park in Mendham is now open.

The walk will take place rain or shine on Saturday, November 3, and registration is $22.50 through Oct. 31. Just like the inaugural event in 2010 and last year’s successful second walk, all proceeds and donations will benefit the education outreach programs and services of NJCTS.

NJCTS is a statewide non-profit 501(c)(3) whose mission is to support the needs of children and families with TS, to advocate for individuals with TS and to educate the public and professionals on TS. That “for kids, by kids, about kids” mission spurred the launch of this event in 2010 with the help of Mendham resident Emily Carrara, who this June graduated from Mendham High School but still will remain a big part of the Mendham Walk.

Carrara collaborated with NJCTS in 2010 to create the Mendham Walk in part because her cousin, T.J. Stanley, a recent graduate of Ridge High School, has Tourette Syndrome – an often misdiagnosed, misunderstood, inherited neurological disorder that is a lot more common than most people think. As many as 1 in 100 kids have TS.

Last year’s event attracted hundreds of walkers, and NJCTS is hopeful even more will attend this year’s event – which will be an officially timed 5K family run/walk for the first time. To register for this year’s event, please visit the official Mendham Walk registration page. To donate to this year’s event, please visit the official Mendham Walk donation page. For more information about NJCTS or past Mendham Walks, please visit www.njcts.org or call 908-575-7350.

My scholarship essay: “My Life With Tourette”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome for their 2012 Children’s Scholarship Award contest. I hope you enjoy it! And here is my profile on the NJCTS website.

When people come to know that I have Tourette Syndrome, they are often shocked. They feel this way because I don’t have Tourette in the way that most people see it on TV and in the movies. Whenever I see Tourette on TV or in a movie, it’s usually displayed in an extreme case resulting mostly in yelling profanities.

That’s why when people find out that I have Tourette they are shocked because I don’t have symptoms like they are accustomed to seeing. I try my best to educate people on how Tourette usually is seen in people and how it’s not always like it is on TV. Sometimes, it is just so frustrating to explain to someone what it is when they have such a skewed opinion of the syndrome already.

Some of my symptoms in the past have been cracking my wrists, sniffling excessively, and most of all, aggressively blinking my eyes. Occasionally, my wrists get sore and achy after having bad attacks. On a bad day, my eyes will be the only thing I’m worried about. It’s as if whatever I’m doing, I can feel every blink like I can feel my own heart beat.

But on the other hand, some days I forget I even crack my wrists or blink my eyes, and it’s as if I don’t even have Tourette. However, considering some other cases that I have personally seen or read about, I consider myself lucky that I only have to worry about my eyes feeling sore at the end of the day. I don’t worry about going out in public and scaring people or making anyone else feel uncomfortable around me.

My doctor, my parents and I have considered medication in the past, but I always convinced myself that side effects from such medications would outweigh the benefits. Still, to this day, I have never taken any Tourette-related medicine. I’ve heard that the effects of Tourette sometimes get worse as you get older. I’m not worried about that, though. I just look at it as a chance to prove how resilient I can be.

I’ve always been a very good student, I play two musical instruments proficiently, I am extremely athletic, and I have an incredibly circle of supportive friends and family. In September, I am going to Rutgers University to study — my first choice to further my education. I don’t let Tourette take over my life, nor do I make myself or anyone feel sorry for me.

How have people reacted to you having Tourette? I want to know!

Hey guys and gals! Been a while, huh? Well, thankfully, school is over, so that should either have a positive or negative effect on how much I write! Today I wanted to talk about the reactions people have to Tourette Syndrome.

If people have given you any strange, mean or even funny responses when you told them that you have Tourette, just comment on this blog post what they were! I will include them in a YouTube video about reactions to Tourette.

My most annoying response that I always get would probably be the one that goes like, “Oh my gosh! That’s so cool! I would definitely use that to my advantage and cuss in class a bunch!”
 
Now, you can’t tell me that wouldn’t annoy you, too. Recently, I was telling someone who also had Tourette about a few things going on with my TS, and they kept saying, “That’s weird.” Really? That’s weird? You have complex tics, too! I don’t understand how someone else who has the same condition as me would think what I was doing was… Weird! If I’m weird, you’re weird too!
 
Sometimes, I try to look at myself from someone else’s point of view. Honestly, if I knew nothing about Tourette, and had just met myself, I would think I was extremely weird. But when someone else who has TS says what you do is weird, that’s just kind of peculiar.
 
If you don’t have Tourette, your first impression of me depends on the kind of day I’m having with my tics. If it’s a bad day, then yes, I understand why you think I’m weird. If you see some girl puffing up her cheeks and making high-pitched squeaking noises at you, you’d think she was weird too, unless you knew about Tourette.
 
That’s one of the reasons I have this blog — to raise awareness so that people know about that girl who puffs up her cheeks and squeaks. So they know why she’s doing it, what makes her do it, why she can’t stop. I know just what it is like to be her, and trust me, it’s not always fun.
 
On a happier note, HAPPY SUMMER! Everyone have a great one! 🙂

My scholarship essay: “Reaching Success”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome for their 2012 Children’s Scholarship Award contest. I hope you enjoy it! And here is my profile on the NJCTS website.

It was one of the happiest and proudest moments of my life when EMI Publishing informed me that, based on listening to my recording, the surviving members of the band Nirvana and Kurt Cobain’s widow, Courtney Love, had approved my commercial use of their song “You Know You’re Right.”

In fact, I was the only American and only the third person to be granted this license. I had been told, “Don’t get your hopes up because Courtney will probably say, ‘No.’ ” For me, it meant that my years of dedicated effort to become a musician and vocalist were recognized at the highest level of the profession and that I would be able to perform a song by Kurt Cobain on my first record album.

Ironically, I owe this and many other successes in my life to Tourette Syndrome because having this condition fueled a burning desire in me to communicate my feelings in words and music so that people would appreciate me for my thoughts and feelings rather than focus on my tics.

Having Tourette led me to embrace people who are different, judge people and select friends based on their character, and develop the self-discipline and patience necessary to master guitar playing, songwriting and many challenging subjects in school. Continue reading