Whom ever said Tourette Syndrome isn't painful, never had it.

It’s not the individual twitching, but from a series of tics and twitches. You try to hid those tics from others by controlling those burst of energy, it becomes tiring, sore and painful. It’s not just physically painful but mentally tiring from a day of controlling your Tourette’s. So is Tourette’s painful, I say yes.

My repetitive coughing, leads to couching up phlegm and people think you have Covid. My leg, arm, neck twitching make people ask if I’m ok, but try to explain what you got, and they don’t want to hear. Some people will watch you carefully to try and prove that you don’t really have what you say you have.

One traveling partner decided that I didn’t have what I said because, well I was sleeping on the train, I didn’t twitch during my sleep. So he decided that I was me looking for attention and I didn’t have what I said I have.

Some people will just not react that I twitch and act like it doesn’t happen. So because they don’t accept it then their most not have any pain associated with it. But I do have to say that the people I work with are cool about it. As long as I can do my job, then they accept it, as long as it’s not to weird.

I’m don’t have much vocal tics, but I do cough, blowing and puffing my lips, clicking my fingers sometimes. Some times my puffing makes my lips chapped. Which leads me to my tic’s for causing my mouth sores worst. So I dread getting colds, and I think cold meds make my twitching worst.

So far my mental tics havn’t been over blown, I seem with medicine to control those, but if I don’t take my meds, I can become very obsessive with my ideas. Sometimes that not a bad thing.

So what do I do to keep the pain down, take pain killers or keep my head and neck still while I am in my bed. Sometimes, I find a private place and just start twitching.

What does Tourette"s mean to me.

Well, I am reminded each day that I have Tourette’s. Specially when I am alone, driving home from work, or right after I get home from work. It just all comes out, as they say. Neck shakes, arm jerks, leg jerks, the jaw grind. Starts simple and then becomes hard going through a set pattern till my evening medicines kick ins. The rest of the time I’m twitching, but I’m good at hiding it.  I twitch, motor and vocal all the time. I once had an attorney ask me a question about how long does my twitching affects my normal daily routine. I really didn’t have an answer, because I feel my twitch all the time. I’m surprise most people don’t even see it or notice them. I think it’s, if I say nothing, it will go away.
 When I’m working out a problem, or taking pictures, I can forget that I’m doing it. People tell me to reduce the stress in my life. They think I must be overly worried and stressing out over something and that why I have multiple tics. Well, I hate to tell them, stress doesn’t bother me.
 I’ve been working at a stress for job for over thirty-seven years, I’m used to it. Hey when I was five, I must have been stressing life too much, because I was ticking back then. We didn’t know what it was. That was way back in the 6o’s and few people know what Tourette Syndrome actually was.  Tourette’s to me is who I am. It made me pay attention to details, develop an interest into the arts. It made me know I can survive this world by myself, to explore different things, to look for the unique. But it has also held me back from approaching people and try to be close. Because it worried me, they would not accept me. Till this day, I’m great at developing a story, on paper or with images, but try to get me in front of an audience, then I clamp shut.
 What made me overcome this fear was my camera. With a camera, I can do something, like take pictures, I had a purpose there. People would only see the camera and not the tics. I became the lay back guy around the office, mostly to protect me from people that would turn my tics around against me.
 My career as a photographer has its up and down. Some people that I worked with haven’t been on my side, but that’s Ok, they were not my friend. But overall, my agency has been good.

Holding myself back!

I’m not sure if it’s part of my Tourette’s or the OCD, but I sometimes feel I am holding myself back from the career that I want. I have a full-time job where I work in photography and computers, not always the subject that I want to photography, but isn’t that the same with any other job. Could it be that I am sabotaging my career because I don’t want to hear or explain about my twitching to a new group of people?

I know now. More people know what Tourette’s basically is. Then when I was growing up. It hasn’t really stopped me from learning and developing my photography, art or computer skills. But it has made me more shy in some ways. Now, people who know me will say I’m not shy. But I feel shy and unless I really have to go up to new people and make nice. I rather stay home with my dog, then met new people.

I guess I’m worried that my plans won’t turn out how I want, that it will pass me by as I get older. Co-workers are going the extra mile and getting the photography that they want. Even getting noticed by others or at least talked about. Maybe because I play the down low, laid back kind of person, people don’t think I could use some praised or even care.

Yes, I have Tourette Syndrome and I am a photographer

This blog will be about being a photographer and having Tourette Syndrome. I will try to discuss what it is like living with Tourette’s and the choices that I made as a photographer. I hope to connect to my fellow photographers that have Tourette’s and build a community where we can all help each other. I am in the process of setting up a Flickr page to show our work to each other. Where we can comment on each other’s images in a safe environment.

A little about me. At the time of this writing, I am fifty-nine years old, and a professional photographer. Ever since I was given my first camera back when I was only eight years old, I have been hooked on photography. Always into the arts, drawing, watercolor, but after the first camera, I was pulled into photography. I didn’t want to do anything else with my life.

My Tourette’s started at an even earlier age, my family and I did not know exactly what it was, but they new I had a problem. As I grew older, we expected it was Tourette Syndrome, but no doctor would confirm the condition. It wasn’t till I was working in a forensic photography studio a couple of years, did I finally get my confirmation that my repetitive movements and unwanted thoughts and sounds, also called tics, was actually Tourette Syndrome.

My blog will explore what Tourette Syndrome is and how it affected my career and choices as a photographer. I hope to learn from others about this condition as I hope to teach others about my condition.

Where you can find information on Tourette Syndrome

Tourette Syndrome (TS) is not a common ailment, a condition that many people, including doctors, have run across. When I was a child, few doctors or medical personal actually knew what it was. When I was in high school, myself and my parents thought it was Tourette’s but no one would confirm it. I even had a psychologist when I was in the sixth grade and that is one of the reason I believe TS is a chemical in-balance and genetic. The psychologist did nothing for me.

In college I went to the doctors at the University of Rochester to see if they could determine what I had. After all the tests, they concluded it was from a fall that I had as a child. I fell down the stairs leading to the basement in my parents’ house and had a bump on the left side of the head. They said my droopy left eye was confirmation of what happen to me.

My doctors finally confirmed TS at Kaiser Permanente after I reached thirty-two or thirty-three and placed on a series of medications that I am still on. There has been a slight change over the years and several other medicines added to help me control the motor tics, audio tics, and OCD issues. I’m thrilled with what I received from Kaiser and the amount of control I have over my TS.

One thing I find annoying is that people try to associate their issues with TS. Is this concern action, part of TS. Can I blame this social irregularly on to TS. I guess people just don’t know what is TS and what isn’t TS, or what they associate with TS. I am originally from the western part of Pennsylvania and found an organization that handles Tourette Syndrome and issues related to TS. It’s called PATSA and on the web here,

https://patsainc.org/tourette-info/after-the-diagnosis-of-tourette-syndrome/.

They have a wonderful PDF on the subject which is found here,

https://patsainc.org/wp-content/uploads/2020/07/PATSA-PrimerBrochure_pr2.pdf.

They have a common symptoms sheet that is very useful in determining if some symptom is a part of TS.

https://patsainc.org/wp-content/uploads/2020/06/Symptom-Sheet-final-2020.pdf.

Most of the information is for children, because TS starts when you are before five years old, and might end by the time the child starts college. What most groups don’t talk about is people who have TS still when they are adults. My symptoms never really went away as some groups claim, but became worst during my thirties and I still have them today, thirty years later.