The following entry is based on notes from a public speaking engagement in fall 2009 whenI was on a guest panel while attending the annual conference and AGM for the Tourette Syndrome Foundation of Canada. I have since updated some details to reflect my current life:
Hi there, I’m Virginia Middleton. I’m 29 years old and I live in St. John’s with my wonderful husband. I have a university degree, a certificate in Criminology and a post graduate diploma in corporate communications and public relations. I’m currently a communications coordinator at the Faculty of Medicine at Memorial University of Newfoundland.
I have lived most of my life in St. John’s, Newfoundland and Labrador and at the age of six, I was diagnosed with a mild case of Tourette Syndrome (TS). Now just because I’m considered to have mild TS doesn’t mean that growing up was a cake-walk or that I had it easy by any stretch. Let me tell you what my family when through when I was diagnosed…
When I was around six years old, my parents and other family members noticed that I was doing some odd eye movements and scrunching up my nose at random. Sometimes it was more obvious, othertimes they saw me rolling my eyes around when I thought no one was looking. I also started making little humming noises from the back of throat; which we now know were vocal tics.
We paid a visit to my family doctor and he recommended that I see a specialist. It was suspected that I could have Tourette Syndrome and back in the mid-80s, the disorder wasn’t as well know as it is today. So off we went to see a specialist at the Janeway Children’s Hospital. And so the journey began…
After some time, a specialist decided to give my parents “the news“. It wasn’t pretty. He bascially said, “I’m sorry to tell you, but your daughter has Tourette Syndrome and there’s nothing we can do. She really has no future and will unfortunately amount to nothing. She’ll have no friends, will not be able to get an education and going forward will be nothing but a burden.” Shocked, my parents told him about my recent birthday party that included almost all of my classmates and how much fun we all had. His response, “oh they’re too young to know better. She’ll be rejected by her peers in time.”
My parents were shattered. It was like being hit by a bus. Here was their sweet, hyper, chatty, happy little girl who would now have a life of misery and hardship. They didn’t know what to do. Thankfully, they sought out a second opinion (I thank my lucky stars everyday that they did!). The second doctor said something along the lines of, “Oh yes, she has Tourette Syndrome, but it’s a mild case and she’ll be fine. It often lesssens over time. You should find out more information so that you can better understand it. Here’s a 1-800 number you can call that will get you in touch with other local families who also have this.”
It was that day that my parents called the Tourette Syndrome Foundation of Canada. Ove
r time, they became heavily involved with the local chapter and my father volunteered on the national board for 14 years and was the national president for a number of years. I’ve attended numerous national conferences and have found a second family (more details on that to come).
I could go on, but feel that there are potential future posts here within this topic. The importance of support, public awareness and advocacy are just a few areas I want to cover at a later date.
I’m not looking for sympathy or a blanket excuse for when life gets tough. I’m here to give some perspective on a disorder that often gets a bad rap. Hollywood and the media have gotten better, but there are still occasions when a character will swear a lot and perform acts of violence, only to have it justified when someone says, “Oh s/he has Tourettes.” It’s a spectrum disorder and we’re like snowflakes – no two people are the same. While someone may have a shoulder shrug, I could have an eye twitch. And that eye twitch could wax and wan and you may never notice it. Before reading this, did you know I had Tourettes????