52 Weeks of TS: Week 46

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. With just 6 weeks remaining in this series, there’s a chance you missed one more entries from his exciting, revealing journey. You can read all of them here. For more information about Troye, please click on his name or visit his website.

I’m tired!! I have to say, I think this has been one of the longest, most exhausting weeks that I’ve had in a while. I had a freelance job doing hair and makeup for a high school musical, which I do about 5 times a year, but this one was different. I usually design the show three weeks in advance, but I missed two weeks. I ended up designing the show on Monday, and we opened on Wednesday. This just made for a very stressful week, not anxiety, but a lot of stress.

Just like anxiety, stress triggers my tics, so it’s been a very ticcy week. I feel as if my brain has been bouncing around inside my skull all week. My neck tic has been bad all week, and I’ve been taking aspirin for the constant headache that does not seem to go away.

Usually, I try not to suppress my tics in my everyday life, but while I’m working in the high school all bets are off. I just feel as if I have to suppress them.

I guess it has to do with my own high school experience. There was always constant mocking and my fellow students were always making fun of me. Once I walk back into a school, it tends to bring me back to that time and place. It’s a cruel world we live in. I try not to suppress my tics in many adult situations, but when you’re dealing with uneducated ignorance and immaturity of high school kids, it can be hard to explain. How do you teach someone something who thinks that they know everything?

A person with Tourette Syndrome has to have thick skin. It’s not something we are born with, but we have to grow it. I thought about this a lot this week, and I’ve realized that we have been supplied the greatest weapon for our fight to educate — our mouth. The more we open our mouths, the thicker our skin becomes and the stronger we become, but it can be a hard thing to do.

When we are kids, we are scared, nervous and possibly beaten down by ignorance. It can take a lot for those shy kids to battle their own fears and demons, to turn around and speak about the very thing that has brought them down. Look at me. It took me about 15 years to start my battle against ignorance, and I still deal with fear. Despite the fear, I still try to fight the fight and continue to educate people.

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4 things someone with Tourette wants you to know

EDITOR’S NOTE: This blog entry was originally posted by Brittany Hays to ThoughtCatalog.com.

I’m sure at some point in our lives we have all come into contact with someone who has Tourette Syndrome. For those of you who haven’t, well, you have now. I have Tourette. I was diagnosed around age 9 in the fourth grade. Talk about trying to fit in. I never did ‘fit’ in, but looking back I’m glad that I didn’t.

To me, being able to live your life without the worry of upsetting a specific group of friends makes more sense, and quite frankly involves much less drama. I hate stereotypes, mainly because they give off false information that aggravates the person or group that you are stereotyping.

One stereotype that I get put into for having Tourette is that I cuss and say swear words. I have never done that. Tourette isn’t about cussing. In fact only 10 percent of people with Tourette actually cuss involuntarily (it’s called coprolalia):

1. If Tourette’s was only about swearing, I think I might actually enjoy it more. Getting to say whatever is on your mind simply because you cannot help it seems awesome, right? Well, it’s not. Try applying for a job. Who is going to want to hire someone who says “f— you” every two minutes? Not many. It’s not fun or funny. It’s humiliating. Tourette’s is about acknowledging society’s ignorance, and accepting that people are people. Now, I am not saying that I don’t ever catch myself stereotyping or judging people because I do. I mess up, and act impulsively, just like you because…well….I’m human also.

2. Have you ever been told to stop sneezing? Probably not, because most people know that you cannot control it. Imagine getting asked that when you go to order food at a restaurant because you are constantly sniffing, or are shopping in the local mall and you smack your lips all the time. It gets frustrating, but Tourette is about realizing people question everything, and that’s okay because it’s human nature. Honestly, if people didn’t question what I was doing, then I would get worried. It shows me that it’s human nature to be curious. By asking what I am doing, it lets them learn something new, and hopefully they can pass it along to others.

3. To me, Tourette is about learning to laugh at yourself and acknowledging that doing so is acceptable. If you can’t laugh at yourself, then people are going to assume that your Tourette is a weakness for you. Yes, at times I would enjoy a little break, but in the end I am a stronger, more intelligent person because of my ability to embrace what would be considered a weakness.

4. My Tourette has allowed me to appreciate differences in people. It’s taught me to not only be more accepting of myself, but also of others. You never know what anyone is going through until you have been in their shoes. Having Tourette has given me a way to see the world in different ways. I aspire to learn about others, so that I can learn about myself. Aren’t we all connected? Don’t we all deserve dignity and respect?

You see, I don’t want sympathy from people, or to hear, I’m sorry, that must suck. Yes, at times it does suck but you know what? I am alive. I have a house, and wonderful parents who have provided me with a life of happiness, so if the worst of what I must go through is to have this disorder which in turn has only made me a stronger individual, then I am grateful. I am grateful that I do not have to wake up in a hospital bed, or out on the streets. I’ve been blessed, even if that blessing seems hidden at times.

Embrace your differences. If each of us were the same, this world would be dull and boring. Be curious without being cruel.

52 Weeks of TS: Week 42

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. With just 10 weeks remaining in this series, there’s a chance you missed one more entries from his exciting, revealing journey. You can read all of them here. For more information about Troye, please click on his name or visit his website.

Welcome to the wonderful world of TS, a world that brings on strange and mysterious underlying disorders. Additions to our state of mind that we might never expect, this week is depression. I don’t suffer from this much, but when I do, it hits me like a brick wall. Earlier this week that brick wall hit me out of nowhere.

It was a normal day, and by 5:00 pm, I felt the brick wall of depression crumbling around me. I ask myself, “why?” I have been working so hard to try to make changes to better my life. I just released a book, that I hope will help people all over, I changed jobs to get out of the negativity and immaturity of the previous job setting, but still the depression finds its way inside me.

On this night, I sat there and watched mindless TV with my husband, but I just sat there in a funk. The whole night I was on the verge of tears, but there was no explanation for it. My husband asked me a few times why I was so crabby, in which I responded, “I’m not crabby.” I couldn’t tell him that I was depressed, and had feelings of just not wanting to be here anymore. If I had said those words, he would have just asked why I was depressed.

How do you explain to someone that you have no idea why you’re going through this, but to link it back to this TS thing I have. We finally did go to bed and he still pushed me for an answer as to why I was acting so weird. As I sat there in the darkness of our room, the tears quietly rolled down and I still said nothing was wrong. By this point, he knew something was up, but I was still unable to explain it.

It scares me sometimes, because I don’t want to scare him. Maybe it’s the OCD inside me, but all I could think of is what was he thinking, “Did he think something is wrong with our relationship?” No, that’s not it. I don’t know why I am this way. It’s somewhat funny, ironically half way through the night he showed me an article about the creativity in writers with mental illness. As we laid there, he asked me if what I was going through had anything to do with that article. I told him, “No, ironically it started before I even read the article.”

The little bout of depression lasted just a couple days, as it always does. In the midst of my depression, I did have my acupuncture appointment. The anxiety and fear built up as the appointment approached. I actually tried to come up with excuses to cancel the appointment, but sucked up my fear and went to the appointment.

The appointment started with an interview about my medical history. I filled out a form checking off all my medical history. One of the things I did check off was depression. When the acupuncturist came back in the room, and looked over my form, she started asking about everything I checked off. When she asked about the depression I told her I go through it once a year for a couple days, and before I could even finished the sentence I burst into tears.

For no reason, I was sitting there crying in front of a woman I had known for about five minutes, how embarrassing… She said not to worry about it. I told her besides the depression I was also dealing with many OCD issues and increased anxiety about being there and having acupuncture. In actuality, it was not that bad. A few light pokes from clean, unused needles and I was quite relaxed.

I have to go back next week and do the acupuncture again, I think it might be a once a week thing. We’ll see how well it works with the tics and anxiety. I did tell her that I was on a new regimen of multivitamins, fish oil, and that I felt that it was working on my anxiety. She explained that fish oil could help with anxiety. I do have to say, I really feel like the fish oil has been helping. I usually have such horrible anxiety about leaving my apartment and getting on the subway, but now it’s not that bad of an event. There is still a little anxiety, but the level has dropped dramatically.

I hate talking about going to the bathroom, but I have discussed this a few times in the past weeks. Since the event back in august at the airport, I’ve been really trying to pay attention to my bathroom behavior. I have notice I actually do tic more during and after going to the bathroom. It’s one more strange realization, but it does put me into a small tic attack.

It’s a funny thing that we can walk through life but if we’re not paying attention, we might not realize certain things about ourselves. How are we supposed to educate others about a disorder that we have, if we don’t even know ourselves? This year has been a great year, and I have learned so much about my body, and my unwelcomed guests Tourette Syndrome, OCD, anxiety disorder, etc.

I’m glad I’m learning more about myself, and am now able to educate people about what I’m going through. Before coming out of the so-called, “TS closet”, I was uneducated about what I was going through. However, through research, asking questions, educating myself, and just looking into myself, I feel like I know my body more than ever.

While I was in the “TS closet”, I spent much of my time blaming others. I have stopped blaming others now. We can’t blame the world for our problems. We are the solution. If we educate ourselves, we can educate others. I think that we all will have to deal with experiences of ignorance, and all we can do is open our mouths and try to educate. If they are unwilling to learn, that is their own ignorance. We just have to remember that we are the solution.

Until next week, “I’ll tic to you later.”

Dr. Phil to misrepresent Tourette Syndrome on Thursday?

Just heard and saw some disturbing information. This Thursday, Dr. Phil is having on a girl with Tourette Syndrome. The description of the show is so disturbing. What’s even more disturbing is his description of TS symptoms on his website. It has made me so angry and sick to my stomach. He lists crotch touching and inappropriate sexual behavior as symptoms of TS. How are people like him allowed to misinform the public?

It’s all right here: http://drphil.com/articles/article/509/

Did some research on this. The definition he is using on his website is from a book published back in 1988. So he is using research done in the 80’s to educate people about TS. Have called CBS to complain about the use of old, outdated research on TS.

Questions about ignorance in the workplace

The following questions and comments were recently posted by a parent to the Facebook wall of the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS).

Has anyone here ever felt it difficult explaining to co-workers the difficulties of having Tourette and the emotional/physical backlash that comes along with it? Has anyone ever had a co-worker who was completely ignorant and insensitive to the plight of someone with Tourette? Has anyone here ever felt completely mentally exhausted from constantly having to explain the social behavior of someone with Tourette?

I know I have. I have experienced all of this. Part of me wants to let it go … yet the other part feels a great injustice has occurred at my job. 🙁

52 Weeks of TS: Week 19

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed the first 18 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

Where is the breaking point? How far do I have to go to educate people before the ignorance stops? Yes, ignorance. This week I have come face to face with the ugly monster of ignorance. I’m really just shocked by peoples’ mentality. As I have discussed before, for the most part, I take a cab home at night because of the crowdedness of the subway during the pm rush hour traffic. The pm hours are difficult because of the endless day of suppressing my tics.

If I was to take a subway home that would mean one more hour of trying to suppress and, truthfully, I just can’t do it. I work down town four days a week and I get out of work around 7 pm. I might go have a drink with a co-worker, otherwise I get in a cab and head home. It’s about a twenty minute cab ride home, and there is a little comfortability to release some of my tics. I don’t fully let go, but release some.

Thursday night I did go and get a drink with a co-worker, and got in my cab home. I might have had a little buzz, but was pretty level-headed. It was a normal entry into the cab and we started on the way home. Within about two minutes, I noticed him staring at me through his rear view mirror. I politely asked him, “What’s wrong?”

I was doing my normal neck and arm tics to a point, but was not even at an extreme yet, so with the strange look I was receiving I was confused. He shook his head no, as if the was nothing wrong. We continued driving and I dealt with some emails on my phone. A few minutes later the driver asked me, “Is everything alright with you?”

It was at this point I knew he was talking about my tics, and I said, “Yes, just to let you know, I have Tourette Syndrome, just ignore my tics.” I smiled and went back to my phone. Even with the smile I felt outted. I like to think I have my special ways of hiding but releasing my tics. I was just shocked to have it actually brought to my attention. If you notice it, do you really think I don’t? I called my husband to tell him I was on my way home and what just happened. I was somewhat devastated so had to just get it off my chest, he told me to relax, and he’d see me soon.

Within minutes, along the FDR highway, we were being pulled over. Let me tell you New Yorkers a little secret: Taxi’s have an emergency S.O.S. light that they turn on that signals the police that they are in trouble or danger. The officers approached my door and asked me to step out and to the back of the car. While one is asking for my ID, the other is talking to the driver.

Besides showing my ID, I also showed my TS medical card and explained that I think that’s why this incident has occurred. (Really? How is my head shaking a danger to you?) The police officers were quite shocked and supportive. After trying to explain to the driver what the situation was and telling him he had to continue to take me home, the driver argued explaining that he didn’t feel comfortable and didn’t know what drugs I was on.

I also explained, that I was not comfortable continuing the ride with him. Long story short, I ended up being taken home by the kind police officers. I’m 38 years old and this was my first time in the back of a cop car, but not for a bad reason.

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52 Weeks of TS: Week 12

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed the first 11 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

Hey world, get off the phone!! Technology is killing me. I witnessed a scuffle between two people on the street, because they both ran into each other because they were too busy on their phones. Walking around NYC, you see a majority of the people texting, or talking on their phones. You can even catch someone actually on his or her computer.

I’m not sure how to link this with my TS, but I’m sure I can. People drive me crazy. Is it my social anxiety, my OCD or a mix of both? I hate walking down the sidewalk, trying to dodge all the people on their cell phones that are not paying attention to the world around them. Do they really think this is socially acceptable? Where has technology taken us?

I’m not sure if it is my TS, but when I was younger, I had a thing with numbers. I had a little bit of a photographic memory, now I feel like we’re all turning to some type of technology to do anything in our lives. I don’t know anyone’s phone number except my husbands. Now all we do is press a name and it automatically dials for us.

To this day, I still remember my child hood phone number, grandmother’s phone number, aunt and uncle’s phone number, but now I have to look in my phone to give someone my work number. It’s sad what we have turned into, and who knows where the next step is going to take us.

I suppose I’m fine with most technology as long as it stops slowing the world down and making me late. That’s one of my big things, I hate being late, and I hate waiting. So when people are slowly walking down the sidewalk and not paying attention, there’re making me late. My head goes crazy with these thoughts, even though, for example, I’m never late for work. In fact, I’m usually there 15 to 30 minutes early, left outside waiting for someone who has keys to arrive.

I sit there waiting and the OCD sets in. I stare at the windows of the building across the street while I wait and think, are there people looking out those windows at me? Do they see me ticcing? Do the people in the cars, driving by, see me ticcing. I do this every day before work, and I don’t know why. I know the person with the keys is going to be late, she’s been late every day for the five years I’ve worked there, but I just can’t be late.

I still suppress my tics at work as much as I can. Everyone knows I have TS, but I only really talk about the extent of it with a few people.

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52 Weeks of TS: Week 8

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 7 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

Can we talk about discomfort, awkwardness, embarrassment, and uneasiness? This is my life in a nutshell. I spend most of my time wondering if it’s all in my head, well I guess it is in a sense. I guess what I mean is, is there some way I can control it more? Would I actually die if I touched the pole in subway car? Probably not, but it is a terrifying thought.

I spoke last week about transitioning myself to not shaking hands and this week I have made that transition. Living in NY, I never realized how many new people I meet on a day-to-day basis. The transition has been an interesting endeavor. When meeting someone I either say, “Sorry, I don’t shake hands, I’m OCD”, or I just blame it on the fact that I just washed my hand and they’re still wet. It’s actually worked out quite well.

Being a hairstylist is a funny and sometimes awkward situation. One of my clients actually asked me this week, why is it that I can play in peoples hair all day but I can’t touch a person’s hand? It’s a little confusing, even to me. I guess one thing is that before I cut someone’s hair he or she is shampooed, so I know they are clean. Another thing is that with the hand touching, I know that person has touched so much with their hand. Whatever, it is strange, but I guess that’s the way it is with OCD.

I have discussed in weeks past ignorance in people, but this week I’d like to discuss ignorance and acceptance. I was on my way to the doctor to refill my medication, on the subway a woman sat next to me, well at first she practically sat on me. Within a few minutes, she was coughing and sneezing instantly putting me in panic mode.

I covered my nose and mouth to protect myself from the floating germs that are now airborne. I sat there contemplating either moving seats, or even switching cars. I tried very hard to suppress my tics, but my shoulder and neck are always the hardest to suppress. I guess the woman felt my arm continually move from my shoulder tic, she turned to me and said, “Do you mind?”

I was embarrassed and shocked, I have never had something like this happen, and I didn’t realize she actually felt me move. “Stop bumping me”. I politely responded, “I’m sorry, I have Tourette syndrome”. She quickly replied, “Just stop!” I was stunned by her response and came back with “Sure, as long as you stop coughing and sneezing all over everyone.”

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52 Weeks of TS: Week 7

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 6 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

Did you know there are a lot of things that revolve around the number seven? There are the seven deadly sins, seven stages of grief, Seven Wonders of the World, and last but not least all the things that I have to do in sevens. Good morning, OCD. Of course, I waited until week seven to discuss this.

There are different ways people with OCD exhibit his or her obsessive compulsions. Some people’s obsession revolves around cleaning and straitening objects, some revolve around germs and some revolve around numbers. If your OCD revolves around numbers, you might feel the need to lock your door, or touch something a certain amount of times based on your number. If you don’t do it right, there might be the fear of something bad happening to someone, perhaps a loved one.

Like TS, it varies from person to person. For me and my OCD I have the cleanliness, straightening, germ, and number compulsion. I do a lot of things in seven, but not for the fear of something happening to someone, I do it because it doesn’t feel right until I do. I brush my teeth in sevens, (seven sections, top and bottom seven brushes, seven times) I put on my deodorant in seven swipes, I pack my cigarettes seven times seven, and the list goes on.

I have two entrances to my kitchen, one of my newest things to do is walk in a circle through my kitchen seven times and touch the door each time around before I can sit down at my desk. With all my tics and OCD, I’m not sure how I find time to do anything else.

I’m really shocked at the ignorance of society in the world today.

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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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