I have this thing…

Do you know that feeling when you have something to say but you don’t know how to say it? It’s like you know the thoughts and you can feel the emotions, but you don’t know the words.

Every morning you wake up, brush your teeth, put some clothes on, eat some food, go to school or work, meet people, eat food in between, come home, do more work, eat more food, wrap up, and go to sleep only to repeat it all over again the next day, and the day after that, and so on.

And each day when you go through your routine, you think:

Nothing’s wrong

Because the fact is, you can’t put into words exactly what is wrong. It’s like you’re forgetting something.

No, not some ‘thing’, some ‘thought’

And not ‘forgetting’, more like ‘needing to know’

You don’t know what it is you’re supposed to think but it’s there in your brain. It’s an abstract, mind boggling idea churning through you like you’re in the middle of a giant city and you just. Don’t. Know.

You don’t know what you’re supposed to be doing

Or where you are supposed to be going

Or even who you’re supposed to be.

All you know is:

Where you are now.

There is something that has been plaguing me for 9 years. 9 and a half actually. It’s very real, it’s very alive, it’s something that I can’t change. And it’s taken me this long to come to terms with it.

I have this thing, which causes me to be awkward in public—not in what I say, but more in what I do.

I have this thing, which causes people to look at me weirdly—not that I’m disgusting but more like I’m crazy and mental, and not in a good way.

I have this thing which causes me to be so self conscious but at the same time in the heat of the moment I forget I have that thing until someone reminds me with just one look, one laugh, one smirk.

I have this thing…

I have tics.

No, not ticks like from deer that make you break out into rashes and look like a tomato.

According the Merriam Webster a tic is:

Full:

“Local and habitual spasmodic motion of particular muscles especially of the face. A frequent usually unconscious quirk of behavior or speech <”you know” is a verbal tic>”

Simple:

“A small repeated movement of a muscle especially in the face that cannot be controlled. A word or phrase that someone frequently says or an action that someone frequently does without intending to.”

Cannot be controlled. Without intending to. Unconscious.

People don’t see that. All people see are the spasms and the repeated movements and the frequent words or actions. All they see is what annoys them and not what the person is going through—they see the funny weird things that they don’t know about and they laugh, they imitate, they take someone’s weakness and exploit it.

Because that’s all it is…

A thing.

A thing with no cure, a thing that doesn’t go away, a thing I am stuck with for the rest of my life.

I can’t even have a conversation with someone without getting stared at. I know in the other person’s head they’re thinking, “What is that? What is she doing?” because it’s written all over their face.

What am I doing?

I want you to open your eyes, right now, and keep them open…

Still keep them open.

And open

Did you blink yet? Eventually, you will because after some time you will blink naturally. This is how I feel every day. The unexplainable need to go through with the action is, to me, as automatic as blinking is to you.

But what are these actions?

Tics are either motor or vocal. Motor tics consist of nose twitching, hair fixing, obsessive touching, face grimacing, hand stressing, and more. Vocal tics involve grunting, humming, blowing, or saying actual words, like curses. They worsen when under stressful conditions, but are also temporary until the next need arises.

Around 200,000 people in the U.S have the condition, however there is no exact number because many people are not diagnosed. Symptoms typically show in adolescent years and over time, most people improve. This condition isn’t something I just picked up from someone sneezing, its genetic, passed down through many ways but to me specifically, from my aunt.

Treatments include taking drugs that make you feel like you’re drunk.

Sometimes I want to feel like I’m drunk. When I’m all alone in my bedroom on a Friday night because no one wants to be associated with the mental girl. When I’m on my way back from the bathroom and I overhear my cousins laughing at what I was doing, imitating me.  When my parents are yelling at me to stop because they don’t understand that I can’t stop, that I don’t know how to stop. And I don’t know how to tell them, any of them, about what I have.

How do you tell someone that you have a disorder?

Sometimes I feel like I’m gay and I’m coming out of the closet, except I’m not gay and there is no actual closet… I want to scream at the world that I am in fact not crazy, that what I do is not uncommon, that just because I do weird things on the outside doesn’t mean I’m a bad person on the inside. I wish that I could make people understand what I have.

*          *          *          *          *          *          *          *          *

I miss the me that I was back then. Years ago, when we were all friends—laughing and smiling. Not worried about impressing anyone or our looks or being the best. When we were just. Us.

Now, we worry. We worry about who is dressed the best and who has the most followers on Instagram, and likes, and pictures. We worry about making that shot in basketball to impress a girl or worrying about not tripping over our heels while we are already tripping over our words to impress a guy. We worry and we worry and we worry, about being like everyone else, about fitting in, about being liked and loved, about having friends and being popular. But never do we actually take the time to think about ourselves.

Life is made up of moments. Hard fast and blinding moments and when they pass they pass only to make room for more moments. And those moments make you, You. I have a moment, a hard fast and blinding moment, where I realized I have a thing—a thing that makes me, Me.

2016 NJCTS Youth Scholarship Award Essay: “A Journey with Tourette Syndrome”

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!

JordanT

JordanT

Tourette Syndrome has played a significant role in my life ever since I was diagnosed in fifth grade. Initially, it did not pose much of a threat for me. I was still able to focus during school, which allowed me to continue my education and learning. I was grateful for that phenomenon, but it did not come without a caveat. Even though my facial tics were not very severe, I still developed a shyness and self-consciousness because of them. However, I was surrounded by a group of kind and accepting friends, which greatly alleviated my anxiety.

I was able to prosper throughout middle school with the support of my friends and family, but high school was a much different story. I am currently attending the Academy for Information Technology, a prestigious school dedicated to teaching students about the vast possibilities of business, information technology, and computer science. Unfortunately, I was the only student from my middle school who enrolled that year, so I was in a completely new environment. I was terrified at first, but I was able to overcome my fears and make new friends, just as friendly as the ones I had in middle school. The course work was much tougher than in middle school, but I was able to succeed in my academic endeavors. My facial tics were under control as well, so all was well in life.

My senior year of high school was a major turning point for me and my Tourette Syndrome. At the start of the year, I felt an immense weight on my shoulders because of all the new responsibilities I had to assume. With more demanding school work, the college application process, and my extracurricular activities, I felt swarmed with an enormous amount of pressure. And with the additional stress, the frequency of my facial tics skyrocketed. The first few weeks were probably the worst. During class and at home, I could barely keep my eyes open. Not because of a lack of sleep, but from incessant blinking, one of my most prominent facial tics. The warm summer weather only aggravated my symptoms. My self-consciousness also reemerged, as I was afraid people might start noticing my facial tics. I felt like I was hopeless, but I resolved to overcome this obstacle.

Senior year marked a new precedent for my Tourette Syndrome, but I gained a valuable trait from my facial tics as well. My tics were starting to impede my focus, so I knew I had to something or else my learning would suffer. One day after school, I went into deep contemplation and emerged with a strategy for alleviating my troubles. I realized my Tourette Syndrome was a medical condition, so I would not be able to just make it go away. Instead of trying to arduously suppress my facial tics, I decided to embrace my tics as a definitive part of me. Whenever I felt a sudden wave of facial tics about to occur, I would just let it wash over me and run its course. With this method of coping, I was able to maintain my focus and composure while doing my school work. It took some practice, but after a few weeks, I was back on track for success. My facial tics now seemed like involuntary actions, just like breathing or walking. With my new training, I acquired the virtue of patience, which has paid off time and again in school and life. I was confident in myself once again with inspired passion that I could overcome such an obstacle. Instead of seeing Tourette Syndrome as an adversary, I can now see it as a motivator to help me continually improve myself throughout life.

Watch NJCTS Youth Advocate Tess Kowalski’s interview on ABC’ NJ Viewpoint

We are so proud of NJCTS Youth Advocate Tess Kowalski and Tim Kowalski who were interviewed by ABC’s Ken Rosato for NJ Viewpoint. Thank you for representing NJCTS and for all you continue to do to raise Tourette Syndrome awareness! If you missed the segment that aired on Sunday you can watch it here. Bravo!

Tess and Paige are on a roll!

NJCTS Youth Advocates Tess and Paige Kowalski have been on a roll lately. In addition to their presentation at Hamilton Primary School they also presented to the 6th grade class at Temple Emanu-El in Westfield, NJ this week. They educated approximately 50 students and 2 instructors about Tourette Syndrome and the associated disorders and shared their TS stories. Brava, ladies!

Tess and Paige educate Temple Emanu-El about Tourette Syndrome

Tess and Paige educate Temple Emanu-El about Tourette Syndrome and the associated disorders

Some of the factors that cause tics to increase

Some of the factors that cause tics to increase

Tess and Paige show a clip of "I Have Tourette's but Tourette's Doesn't Have Me"

Tess and Paige show a clip of “I Have Tourette’s but Tourette’s Doesn’t Have Me”

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Tess and Paige lead the group in an exercise to help them understand what it can be like living with TS.

Tess and Paige lead the group in an exercise to help them understand what it can be like living with TS.

Tess and Paige take questions from the class.

Tess and Paige take questions from the class.

Guest Blogger: Tourette Syndrome + OCD was exhausting & difficult

It was more than 23 years ago that I was diagnosed with Tourette Syndrome.

I’ve learned a lot in that time. About myself, about others and most of all, that our relationship with mental health and conditions like TS is far more challenging than it should be.

My parents had a lot on their plate, jobs, managing a household, raising 3 children (one with considerable special needs), when I started developing some unfamiliar behaviours. A reoccurring urge to violently shake my head was one that began to frighten them. I once became so distracted with this urge that I stopped my bicycle in the middle of the road to indulge, without paying attention to the flow of cars around me. Sometime after that we began seeing doctors and specialists and figuring out what was going on.

Tourette Syndrome is a neurological condition that essentially causes repeated involuntary movements and sounds that are referred to as “tics”. It affects everyone differently, and contrary to what you may have seen in movies, most persons affected by it do not swear uncontrollably.

Tourette Syndrome was something seemingly unknown to most people and there was lots of learning for all of us to do. What was most challenging for me wasn’t necessarily my life at home or these urges (“tics”). It wasn’t that I had to live with them that caused me the most trouble, it was that I was expected to live a normal life in a world that wasn’t always going to just let it happen.

From experience, I quickly knew that each time I gave in to my tics, someone was going to notice. I knew that each time someone noticed, they were going to make choices. Were they going to pretend nothing happened? Were they going to exploit the opportunity to make a spectacle of it and lead others in a chorus of teasing and diminishment of my character? Or were they going to simply get “weirded out” and lose trust in even being near me?

Naturally, thinking about all of these things stressed me out and just fuelled more of a need to indulge my tics. Trying to hide and suppress them took a lot of energy. During the worst of it, there were probably days where I spent most of my time managing these expectations and very little on school work, engaging with friends or anything else until I finally had a moment of privacy. I was usually too exhausted to do a whole lot with those moments.

As I’ve written before, there were other things also happening to make my childhood difficult in ways that probably interacted with or exasperated this condition.

Continue reading

It’s that time of year again …

Well, it’s that time of year again that every ticcer seems to look forward to and dread at the same time — the holiday season. With all the commotion, excitement, preparation and family, tics always seem to run rampant this time of year. Today is the day of my family’s yearly Hanukkah party and my tics are getting pretty darn forceful.

After 5 months of CBIT treatment for my tics, my tics have been steadily decreeing, and i’ve started to get used to having less tics. However, coming home for winter break and having the holiday season has not been great for my tics.

Being around my family members is very stressful for me (tic wise), and I’m sure those of you who have been following my blog for a while know why. For those of you who have not been following my blog, I’ll just say this: I come from a family who values perfection and social status, and Tourette’s doesn’t really fit into that mold very well. Don’t get me wrong, I love my family and I really do enjoy being home and spending time with them, but it’s very rough on my tics and anxiety.

Being in my home environment has quickly made my tics increase. When I saw my CBIT therapist last week, she immediately noticed how much I was ticcing and told me she hadn’t seen my tic this much in months. We discussed new strategies to try to decrease my tics in the home environment, such as taking “tic breaks” where I excuse myself to go to the bathroom while i’m around my family and just trying to spend less time around my family members (spending time with them in 30 min increments).

These strategies seem to be helping to some extent, but my tics are still much worse than they have been over the past few months. As soon as i’m able to escape to a place where I can let my tics out, I start having so many facial tics, vocal tics, head and neck tics, and even full body tics. The other day I spent a solid period of time parked in a parking garage kicking, vocal ticcing, and jerking my body so hard that I felt my brain rattling around in my skull and got pretty dizzy.

Right now, I’m up in my room while my parents prepare for the party. I’ve been helping prepare for the party quite a bit, but I had to escape to my room to tic and also to avoid the onion cutting. When my mom cuts onions for the Latkes for this party, my sensory processing issues go into overdrive as soon as my eyes feel any small amount of onion.

It feels as if the onions are going in through my eyes and are filling my entire head with this sour and tingling feeling. The feeling will last for hours after the onions have been cut. Even though i’ve been avoiding the downstairs as much as I can, I’ve still gotten a bit of the onion feeling in my eyes. It’s not nearly as bad as last year, but it’s definitely still contributing to my tics.

I’m having a lot of tics right now. I hope they calm down for the party, but I kind of doubt they will. Luckily one of my very good friends will be coming to the party. Having her there will help me feel better, and like the previous years i’ll be able to come upstairs with her to let out my bigger tics.

Anyway, I will probably make a post after the party is over about how it went. Happy Holidays to everyone, and good luck to everyone trying to manage the holidays with tics!

Can you help me with my research?

I am currently an undergraduate student studying Special Educational Needs and Inclusion at Bishop Grosseteste University. I am currently working on my undergraduate dissertation and it is at this point that I need your help!

I am looking for pupils to participate in a research study looking at the relationship between Tourette Syndrome and education, and I am looking for students personal experiences to inform my study. If you are willing to take part I will ask you to fill out a questionnaire which outlines your experiences with Tourette Syndrome and your experiences in school. No one other than me will have access to any of your personal information, and all names will be removed in the research in order to keep you anonymous.

If you have any further questions before completing the questionnaire please feel free to email me at b1202163@student.bishopg.ac.uk.

I would be truly greatful to hear your experiences, as I want to fully explore any relationship that can be found between TS and education, to see if there’s anything that we can do to to make education better for everyone!

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?

Need some encouragement today please

I need some positivity and encouragement today, so if you could, I would really appreciate any comment on this post to let me know how this page has helped you or how I have helped you and your family.

I have one week left of classes, reading week and finals, which leads to a lot of stress, but on top of all that I have extra anxiety going on because of something I found out about a family member over Thanksgiving break. I can’t go into much detail about that situation, but it is pretty devastating and life-changing for this person and the rest of our family to say the least.

Yesterday and today my muscles have been extremely sore from ticcing (mainly muscle tics in bed, and even when half asleep). Every time I sneeze, cough or do any type of vocal tic, I am in pain because of the pressure and aggravation the ticcing puts on my already very sore muscles. I was sore and exhausted all day.

My best guess was that I was ticcing through most of the night and didn’t get a lot of deep sleep, hence the sore muscles and exhaustion. A few times I woke myself up from ticcing last night and the night before. My tic where I hit myself in the chest has come back as well, and that’s a rough one.

What is happening is affecting me because not only is this person a member of my family, but my OCD/anxiety is acting up about the situation as well. It’s making my OCD thoughts worse and is making my compulsions worse as well.

Even though it’s very upsetting, one positive is that it’s made me even more grateful for the life I have. It has put a lot of things into perspective and even though my tics are bad right now, I am grateful for my life, all the opportunities I have been given, and for my ability to take full advantage of these opportunities and work hard to finish my college education, apply to grad school (next year), and hopefully use this education I have been given to make a difference in the lives of others through research and clinical work in my future.

I am also grateful that I am able to make a difference in the lives of others now. I love volunteering at my local Children’s Hospital, forging long-term connections with the patients, volunteering at Camp Twitch and Shout, and making a difference in the lives of all of you through this page.

So if you could, please comment about how my Facebook page has helped you and anything else you can think of that you would like to see on the page to help further.

2014 NJCTS Children’s Scholarship Award Essay: “Anything is Possible”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!

For most children, strep throat implies symptoms of a fever and difficulty swallowing. However for me, the strep virus attacks the neurological system, resulting in Tourette Syndrome. In general, symptoms are inconsistent and not easily recognizable because each patient has his/her own tic profile. My first symptom was an intensely competitive mindset. I was unable to tolerate losing. But, as time went on, my attitude evolved from being focused on winning, to winning when I perform at my best.

This winning attitude is best explained through my experiences as an ice hockey goalie. In hockey, you may think that tics would interfere, especially as a goalie. Surprisingly, I have learned that when I channel my focus on the game, my ticcing is inconsequential. Although I tic on the ice by opening and closing my glove repeatedly, I do not let it affect my game; proper mentality can conquer anything, even a twitch. This was one of many lessons learned on the ice that made me who I am off the ice.

Growing up with a Tourette’s tic that drove me to peak performance helped me learn that hard work creates success. Even when I was not on the ice with my varsity team, I benefitted from my positive mind-set. I used other practices with my club teams, private lessons, and skillenhancement exercises at home to keep my game at its best. During my junior year in high school, I was still competing for playing time on the ice hockey team.

The bottom line is this: whoever is best will be the starter for the next season. In hockey, a single moment can change everything. It can change the possession of the puck, the score of a game, and even a season for a player. My season changing moment was during a game against Montgomery High School.

Coming on to the ice against a fired-up team did not faze me; it fueled me. I knew I needed to prove to my coach that I was the best and I would do whatever it took. With a close game nearing the final buzzer, one of the Montgomery top scorers broke away from the pack. As he raced toward me, I came out of the net to cut-off his angle. He fired a shot so fast I could barely see it. I knew this moment would influence my senior year season.

I caught the puck in my glove while sliding into a split. After my save, my team scored another goal to secure the lead at 2-0. After the game my coach hugged me. At that moment, he knew I was a winning goalie and I knew I would be his goalie for the next season. More importantly, I learned that anything can be accomplished with hard work and a winning attitude. I have never felt sorry for myself for having Tourette’s, and at that moment, I became grateful for having this be apart of me.

My Tourette’s tics taught me lessons that shaped who I am today. I learned that I can do anything I set my mind to. As I was absorbing these lessons and incorporating them into my hockey and life as a whole, I was inspired to document this quote and hang it over my desk: “Never giving up is not repetitive failure; it’s a strategy.”

For some, Tourette’s is an annoying neurological disorder to be managed. For me, it has taught me what is possible. I am even more appreciative of my brain and what it has to offer.