By Keith “Pugsley” Bartram
Walking down the hall at passing hour cussing and swearing, shaking and twitching. Some people staring at me and mocking me, while the others whisper to each other, wondering if I am an epileptic or maybe that I should be put into a mental hospital. But what most of them don’t know is that I have a condition called Tourette Syndrome.
Tourette Syndrome (TS) is classified as a genetic, neurological disorder characterized by motor and vocal tics. Although there is no cure for TS, it is not degenerative or fatal. The symptoms for diagnosing TS are as follows:
- Both multiple motor and one or more vocal tics that are apparent at some time during the illness, although not necessarily simultaneously.
- The occurrence of tics many times a day, nearly everyday, or periodically throughout a span of more than one year.
- The periodic change in number, frequency, type, and location of the tics, and also in the severity.
- Onset before the age of 21.
Tics are non-purposeful sounds and movements that are sudden and occur repeatedly in the same way. The two categories of tics and some common examples are:
Simple: Motor—Eye blinking, head jerking, shoulder shrugging, facial grimaces.
Vocal—Throat clearing, barking sounds, sniffing, tongue clearing, spitting.
Complex: Motor—Jumping, falling to the ground, twirling about, whipping objects.
Vocal—Coprolalia (saying socially unacceptable words or phrases)
Echolalia (repeating others)
Palilalia (repeating oneself)
Now, with all the explanations over with, here is my story about living with Tourette Syndrome. I started having the symptoms around the age of 6 and from what I can remember, I displayed some symptoms like saying “hut” over and over. At the age of 8, after many psychoanalytic tests, I was finally diagnosed with TS. As a third grader, I knew nothing about TS, let alone being able to explain it to my fellow students.
Around the age of 9, I started to display symptoms of another condition called Coprolalia. As stated above, Coprolalia is basically where, for no reason, I would just blurt out swear words repetitively. Kids would look at me funny, and think I was weird or something. My dad was real supportive in helping me adjust to my condition. Of course, at that time I had no idea that TS was such a complicated issue.
Right before I started fifth grade I moved to a new town, North Canaan, and a new school. My dad again went to the school and explained to the school nurse, teachers, and peers about my condition. Most people seemed to understand, but many still seemed to be afraid of me and puzzled by me. But I tried to fit in and go with the flow, as to not cause any more fear and hate toward myself. Around 7th grade, I started to see a school counselor, to talk about my most outstanding problems, mostly about my TS. In 8th grade, I graduated from the elementary school.
The next year I went up to Housatonic Valley Regional High School, and met my new counselor, Mr. Chinnatti, who was also my football coach. He put a major mark in my life that I will always remember. Mr. Chinnatti was always there when I needed to talk about my problems, or just about football plays. He also introduced me to a great cooking class.
In the summer of the transition from 9th to 10th grade, I ended up moving to Minnesota from Connecticut. I started going to Minnetonka High School. I really did not like mainstream because I got the same crap from students in mainstream. As I was walking down the hall, some of the other students that I know would talk behind my back, saying things like “Twitch Kid” or “There’s the kid I was telling you about” and other less subtle things like staring, and laughing at me. I started going through the steps of being suicidal, up to the point of actually cutting my wrists and legs.
I finally told someone about how I felt. Margaret Gaumond, the school social worker, was a real help to me. She was the boost I needed to get myself on to the road to overcoming my problems. At the beginning of 11th grade, I entered Mini-School and was a little apprehensive as to how I would be treated. I had heard around mainstream how bad and stupid people in Mini-School were, but none of it was true. The kids in Mini-School have been really supportive and seem to understand me and my condition. I have never felt so comfortable in a school setting. The staff in Mini-School have taught me more than I have ever learned in mainstream, and the peers I have been with for these five months have really made me feel I belong, as part of a group.