Guest Blogger: Making my film about TS

bella

What Makes Us Tic is a feature-length documentary that aims to increase awareness and understanding of Tourette Syndrome. Through a variety of media including personal interviews, a short film, and an animated robot named R.T.S.T., What Makes Us Tic will illustrate what it’s like to live with Tourette Syndrome, and give audiences a good understanding of the disorder to help stamp out common stigmas and misconceptions.

The filmmaker, Bella Thomson (pictured in this screenshot from an earlier draft of the film), is a high-school student from British Columbia in Canada who has lived with Tourette Syndrome since she was 9 years old. She feels very passionate about raising awareness for the disorder because she’s experienced first-hand the ignorance and lack of understanding that so many people have towards TS, so she’s combined this with her love of film to create a documentary.

OK, enough with the formalities. I’m sure you’re wondering why any teenager in their right mind would attempt to produce a feature-length documentary, and have it finished before they graduate. Well, my best answer to this question (other than that I am just very ambitious) is that I am very driven in my passion to raise awareness for Tourette Syndrome.

To me, if society can come to understand afflictions like cancer or multiple sclerosis, then they can come to understand Tourette Syndrome, and know that it’s morally wrong to mock it, like it is for a lot of disorders or afflictions nowadays. I want people with TS to be able to feel comfortable being themselves, and not afraid of who they are. In short, I want to do my part to make a difference for TS, and I think because I’m still a student living with the disorder, that impact will be so much greater!

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My Story: “One Twitch At A Time” part 7

Here’s the continuation of my story, which I started posting on here a few months ago and initially started on my One Twitch At A Time page on Facebook.

I know it’s been more than two months since I posted part 6, but the past couple of months have been a tad strange/difficult. Foremost, we had a death in the family so that took most of my attention, and after that I was just not “feeling it” because of personal issues, then I got straight up l-a-z-y.

But I’m back on track now. I’m going to try to keep them more Tourette’s-focused, as I noticed that the past couple of installments seemed to veer away a bit to much. So here we go …

I had managed to scrape up enough money to buy an engagement ring but I had no idea what size to get it in, so I embarked on several attempts to covertly measure Joyce’s ring finger. After realizing what an impossible task it was I just took my best guess and bought the ring. So with ring in hand I invited Joyce out to my house and led her out to my old go-kart track.

I remember just how clear and starry the night sky was that night, everything was in place and I was moments away from one of the biggest crossroads of my life. We talked for a few minutes, but I’m sure she knew something was up, so in the middle of the old track I got down on one knee and asked the most wonderful, beautiful, smart and caring woman in the world if she would marry me.

Much to my relief she said “Yes!!” so as I slipped the ring on to her finger I realized that my estimate of how small her finger was waaaaaaay off, but it didn’t matter because I was now ENGAGED, something I never thought would ever happen to me in a million years. My whole life the world had told me I was worthless and nobody would want me, and God came along and said “Oh yeah? Well check this out Billy” and gave me the perfect fit for a soul mate, for a lifelong friend and for a wife, He gave me Joyce.

Now neither of our families were particularly well off so as far as the actual “getting married” part we were not really sure how or even when it was gonna happen. By this point it time Joyce and her Dad had had a bit of a falling out and so my parents offered to let her stay in the camper we had until we were able to get married and out on our own.

Meanwhile, my mother had been planning on taking us with her on a trip down south to San Diego to visit friends & family and was a little concerned that may look a little odd for us to be “together” but not yet married, so one early July morning we all met in the kitchen and out of nowhere my mom says, “Hey, do you guys want to get married TODAY?”

We were genuinely surprised at the offer but we knew it was a golden opportunity so we jumped. Later that day we were standing in the Coquille County Court House exchanging vows, Joyce in her best white and blue dress and me in my best Levis and tank-top, the only thing missing was an angry father with a shotgun!

It didn’t take long for me to realize that my job at McDonald’s was never going to pay enough for us to get out on our own but I had no real skills or experience, so I was rather limited on what I could do. Then one day in October 1992, Joyce’s step-cousin-in-law came and told me about what sounded like the perfect job for me — it was warehouse work at an industrial hose company, it was full time, paid well and had good benefits, so I took a shot at it and went and interviewed then waited. And waited. And waited some more.

So I decided if they weren’t going to call me, I was gonna call them. So for the better part of two weeks I called every day and finally in what I’m sure was a desperate effort to shut me up they finally said, “Yes we will hire you, you start Monday.” I was ecstatic, I was married, I now had a real “grown up” type job and things were looking awesome. The only thing was, the job was in Portland, Oregon…

To be continued …

NJCTS executive director receives joint resolution from NJ Senate & Assembly after winning award

The New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) is pleased to announce that NJCTS Executive Director Faith W. Rice was one of seven professionals honored by MDAdvantage on May 7 for her work in establishing the nation’s first Center of Excellence for Tourette Syndrome in 2004 to provide services for families, outreach to the education and medical communities and support for collaborative research into better treatments and a cure for Tourette.

As part of the event, Ms. Rice was presented with a New Jersey State Joint Legislative Resolution signed by Senate President Stephen Sweeney (D-3) and Assembly Speaker Vincent Prieto (D-32), along with letters of congratulations from Congressman Albio Sires (D-NJ8) and Senator Robert Menendez (D).

Ms. Rice was lauded when the 75th Edward J. Ill Excellence in Medicine Awards honored physicians and health-care leaders at a 250-person black-tie event on May 7, 2014. These coveted awards are among the highest honors given in New Jersey’s medical community.

New Jersey Governor Chris Christie issues 13th straight Tourette Syndrome Awareness Month proclamation

Since 2001, every New Jersey Governor sitting in office has issued a proclamation declaring May 15 to June 15 as Tourette Syndrome Awareness Month in the Garden State. on behalf of the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS).

Governor Chris Christie kept the tradition going in 2014, and the proclamation was received by NJCTS via NJ Senator Christopher “Kip” Bateman’s office on May 22.

Has your state’s governor declared May 15 to June 15 as Tourette Syndrome Awareness Month? If not, write to him or her RIGHT NOW and ask for it to be done. You would be surprised how easy it is to get this kind of proclamation. And awareness from the top often fosters awareness at the bottom. Act now!

52 Weeks of TS: Week 3

EDITOR’S NOTE: On Tuesdays over the next year, noted Tourette Syndrome advocate Troye Evers will share his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed the first two weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

This week I am reminded, “Opinions are like butt*#@*, and everybody has one.”  We all have the right to express them, but if we feel we need to express our opinion, we should except someone else has a different one. This could be based on how we were raised, who raised us, our beliefs, or even our ignorance. I don’t mind dealing with most opinions if they are actually coming from somewhere, but if the basis is ignorance, it puts a damper on my day and week.

This week was not too easy of a week. When I look back on it, it was dealing with many ignorant opinions. As I said last week I was working a job this week where I would have to take the metro north up to Westchester most of the week.  I cannot express this enough, how I think all trains and subways are pretty much just a germ-infested Petri dish on wheels.

I have such horrible anxiety on trains that it triggers my tics even more. I try as hard as I can to suppress them but I can only suppress so much. So let’s say, I was a little ticcy. A gentleman sat next to me, I noticed he kept on looking at me, which just made me more anxious (stop staring at me).

After about two stops, he got up and moved seats. Needless to say, I was devastated.  Because of your ignorance, and unwillingness to learn, you would actually get up out of fear.  Fear of what?  Do you really think, “Oh no, I think I might have caught Tourette syndrome from some guy on the train?”

One good thing that did happen is our monthly TSA Social Hour. The NYC chapter of the TSA has started a social hour, where we can all hang out, talk, get to know each other, and learn. It’s great. After spending almost 25 years in the closet about my TS, it’s good to have a group of friends who actually know what I’m talking about and how I feel.

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Here’s how YOU can take action during Tourette Awareness Month!

Just about every day I see someone asking questions about Tourettes for which there are no solid answers. I can’t tell you what causes Tourettes, I can’t answer why Tourettes is hereditary yet you have no family history of it, I can’t respond to any question about medication without telling you that medicating for Tourettes may take trial and error because we all react differently to medication, I can’t even tell you how many people have Tourettes.

There is a lot of research needed to find the answers to these questions. To get that research done there needs to be more funding specifically for Tourettes. To get that funding we need to make some noise and draw attention to just how many of us there are. The National Tourette Syndrome Association, Inc. has set up an easy way for us to make that noise. There is a bill in congress that would re-allocate existing funds at the National Institute of Health (NIH) towards research and data collection on Tourettes, just follow this link and you can easily write to your representatives in congress to ask them to support this bill

http://www.capwiz.com/tsa/issues/alert/?alertid=63194521&type=CO

There is a form letter already typed up that you can customize. Please do personalize your letters, TSA’s letter is kind of boring and factual, personal stories will make your letter more memorable. When you’re done ask your family and friends if they will also write a letter, the more people that write the better!!!

LET’S MAKE SOME NOISE!!!!!!!

Believe it or not, teachers don’t have it easy, either

I cannot believe I waited an entire 8 months to post…

My first year of teaching is coming down to the last 3 weeks. To say I’ve learned a thing or two is an understatement. Being on the other side of the table has been a little overwhelming and I found myself feeling bad for the times I was not in the least bit sympathetic towards Jacob’s teachers.

It’s not easy being on either side. This is my only excuse for not posting….stress. By the time I get home, It’s time to think about me and my family. I learned after the first few months that your priorities change when your number one priority needs you the most. I can’t wait for these next few weeks to pass so I see more of him.

He has been doing good considering another child started mocking his movements a few months back. Jacob took it upon himself to start twirling a pencil in his right hand because he figured it out that his tics could be somewhat controlled when he does this. I talked to our school occupational therapist and told her a little about Jacob. She recommended that maybe I should get him reevaluated for OCD.

Jacob could care less (for the most part) about having tics on daily basis but he freaks out about the smallest things and he is absolutely terrified about aging. He’s 12! He does not want to get older and he cried as his birthday approached last year and he is already started to panic about this year.

I’d really appreciate some input from other parents on this issue. It’ll be a few more weeks before I’m able to get him an appointment.

I will go with the promise that it will not be another 8 months before another post. Comment me on here or visit my Embracing Difference page on Facebook. I’d love to hear how you or your kiddos are doing.

“At Random” is random, just like Tourette!

A pretty much perfect documentary project for Tourettes in in the social media age, http://www.atrandom.ca/ is different every time it’s watched — just like Tourette. Symptoms are different for everyone that has it, and the viewer can choose how long they’d like to watch — for those short attention spans…

Or, of course, you could click on the credits and watch each person’s story individually! It’s Tourette Syndrome Awareness Month. Do it!

TS Awareness Month: “Mockingbird,” a poem by my daughter

For TS Awareness Month this year, instead of sharing TS facts, I have posted a video, blog post or poem showing the effects on NON AWARENESS on my Facebook page. Today, I chose to share a poem by my daughter Ally that she wrote back when she was first diagnosed. It was about the bullying she received mainly from the staff at her school. Please share her poem if you like.

“MOCKINGBIRD”

The penetrating shrieks it makes,
traps you in a horrible game of risk.
It’s toxic acid, spitefulness,
punches a disintegrating hole of misery
in your heart.

They travel in flocks, looking for victims to mock and tease.
Mocking, mocking always teasing.
Soon they chase you out of safety,
crushing your self confidence
leaving you to cower in fear.

You set sail as an outcast in the ocean of loneliness.
Hoping your Guardian Angel will lift you up once more.

52 Weeks of TS: Week 2

EDITOR’S NOTE: On Tuesday over the next year, noted Tourette Syndrome advocate Troye Evers will share his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed last week’s debut, here it is. For more information about Troye, please click on his name or visit his website.

I’m thinking of a quote, well obsessing about a quote. ”It gets better with age.” We can connect this quote to a lot; wine, some cheeses, and our favorite pair of jeans. What about us as people? Do we get better with age? Having TS makes me wonder. Studies say that about a quarter of children with TS endure tics into adulthood, and only about 5 percent to 14 percent suffer with tics and actually encounter more and new tics in their adulthood.

Well, being nearly 40, and still living a tic-filled life, I’d like to welcome that 5 percent to percent. I actually feel that my tics have worsened over the years, more frequent, and new ones, but hey, if I wasn’t like this I probably wouldn’t be where I am.  In the past few years I have done many things for and with the TSA, and now am on the board for the New York City chapter. I use my writing as a window to the truths of TS and variation of symptoms we as sufferers go through.

My week started off sad, Sunday I had to take a friend to the emergency vet to have her cat put to sleep. My husband drove and I sat in the back seat sacrificing the front seat for my grieving friend. Torturous for me, I have major anxiety sitting in the back seat of my own car. I can sit in the back of a taxi, but panic sets in, in my own back seat. Yeah I know, strange, but it’s the world of TS.

I have been very OCD this week, organizing and cleaning. I have been trying to simplify everything this week. I cleaned my work station at work and got rid of everything I don’t use, I deleted everything on my iTunes and reloaded everything, and I went through all of my pictures and got rid of everything I didn’t want, then put all I wanted on my online storage. The bonus was that I freed up a lot of space on my computer.

I also decided I didn’t like writing in my bedroom, so I took apart my work area in there and cleaned out my dining room and erected an office in there. My husband knows if I have something in my head it’s going to happen and usually happen fast. I woke up one morning and looked in my dining room, at the huge table that in the four years we’ve lived here, we’ve used five times. (One time was to play dominoes, and one time was to build a puzzle). We never even go into the room, it is basically an unused room. Through this thought process, I look into my room and realize the same goes for my writing station in my room, so when I told my husband this it was basically a roll off the eyes and a “whatever dear.”

It’s getting cold out, still no snow but I’m reminded of how much I hate winter. Everyone on the subways are sneezing and coughing. There is just not enough antibacterial, and Lysol to calm me down. Although I am excited, I made the best purchase this week. I bought three automatic antibacterial dispensers. I put one in the kitchen, one in the bath room, and one in the cat closet next to the cat pan. It always weighed on my mind, I’m using antibacterial to kill germs, but if I’m pressing the pump to get the gel out, I’m just putting germs on the pump. So then I would have to clean the pump, but not anymore. I just put my hand under and the sensor detects my hand and provides me my germ killing serum. Why can’t we have these on the subways?

In my mind there is a simple answer to my subway issues — agoraphobia. If I just didn’t take the train I wouldn’t be so freaked out about all the people staring at me for my tics, or the stress that I go through trying to suppress my tics until I get off the train. And no germs spreading!!  Secretly I’d love to be agoraphobic, well I guess it’s not that much of a secret if I’m expressing it here. I’d like to be agoraphobic, but instead of restriction to my house, I’d be restricted to my neighborhood.  I feel safe in my neighborhood, I’m fine as long as I don’t have to deal with public transportation.  I live in a nice small neighborhood in upper Manhattan which is primarily occupied by small mom and pop stores, so I never really deal with places having big crowds. It’s a nice thought, but I have to push on.

Well, we take a deep breath, one step at a time, and one tic at a time. Until next week, “I’ll tic to you later.”