Live your best life with Tourette Syndrome

Cassidy Richardson has a sublime talent: she can dance to make you smile and cry at the one time. Cassidy also has Tourette Syndrome and, along with her mother Janelye, she shared what those words mean for her and how dance has been an answer for her to the question of how to live.

The real Tourette

The media image of Tourette Syndrome is of a person who swears uncontrollably, but that is largely inaccurate. In reality, Tourette Syndrome is a tic disorder that features many physical tics and at least one vocal tic. A tic is an unusual movement or sound over which the person may have no control. Tics may include throat clearing, sniffing, head movements or limb movements. Only a small minority of people with Tourette utter obscene words unintentionally. In reality, the tics are the least of the problems for people with Tourette as it is the underlying comorbid disorders such as anxiety, OCD, depression, autism spectrum disorders or ADHD (attention deficit hyperactivity disorder) that cause the major issues.

Cassidy says of the tics, “They are like a sneeze coming. You know it is going to come but sometimes you don’t know and it can take you by surprise. I can usually postpone a tic but, like with a sneeze, you can stop it but it comes out later.” Janelye says that if Cassidy has held in 20 tics during the day, then those 20 tics will come out when she walks in the door at the end of the day. There are, however, times when she can’t stop them at all and sometimes they can be quite violent.

Janelye says that if Cassidy has held in 20 tics during the day, then those 20 tics will come out when she walks in the door at the end of the day.

On the Sunday before our interview, the family had been getting ready to go out and Janelye found Cassidy on the floor in tears saying, “I’ve just got to get my back right, I’ve just got to get my back right.” Her father Keith helped her up but then there was a tic in her arm that meant she was effectively punching herself in the face repeatedly. Cassidy explained, “The arm movement was a tic; it was involuntary, but at the same time I wanted to hit a particular spot on my face and I would keep going until I hit it.” The Tourette combined with the OCD to give this lovely girl a dramatic black eye.

Healing

Over the years, Cassidy has tried many complementary therapies to help her condition, including chiropractic treatment, massage, tissue salts, diet (less processed food, removing additives), aromatherapy and relaxation. Magnesium supplements and bath salts have helped when the tics are at their worst but in general, while these treatments have all helped at various times, none has helped all the time. On two occasions they have also tried pharmaceutical medication and have had no success.

Janelye recalls, “When Cassidy was first diagnosed, I remember going to a Tourette conference and people there saying that the best thing they had found for their child was finding something they loved and immersing them in it.” For Cassidy that love has been dance.

At the time of publishing, Cassidy is 17 years old and doing her final year (Year 12) of high school. Her dance resume is impressive; in the year leading up to this interview she has been part of the State Ensemble for the NSW Schools Spectacular, has been part of the Company for Southern Stars, has been part of the Illawarra South-East Region Performing Ensemble — and all while doing 13 classes every week at her dance school, Dance Sensations.

Dance frees Cassidy, but she wants to be an agent of freedom for other people with Tourette.

Cassidy says, “I feel free when I dance. When I dance I don’t tic, or if I do I can make it part of the dance. When I dance I am mentally free as well. I’m not thinking about the tics — I’m thinking about the steps and where to go next.”

Dance frees Cassidy, but she wants to be an agent of freedom for other people with Tourette.

Knowledge & acceptance

Cassidy and Janelye have a mantra: “Knowledge and information lead to understanding and acceptance.” Cassidy says, “I don’t want anyone feeling like I did when I was first diagnosed, and that was alone.” In the intervening years Cassidy has met many more people with Tourette and now mentors younger children with the condition.

Cassidy and her family have developed a remarkable bond and philosophy as a result of what they have experienced. Janelye says, “I said right from the word go that Tourette is as much a part of Cassidy as her beautiful blue eyes. Tourette makes her who she is.” Cassidy agrees, saying, “I just want to break the stereotype of people with Tourette. As many people as we can steer away from the idea of people with Tourette swearing uncontrollably, the better. Obviously it has a downside, but if I didn’t have it I think I would feel lost. What would I do with my life?”

Drawing on my keen journalistic skills, I ask the obvious question: “What are you going to do with your life?” Her response is gentle but swift and certain. “Dance. Dance my way around the world.” And I think to myself, “What a wonderful world.”

• Cassidy’s Facebook page is Cassidy Richardson and her Instagram is @cassidyleerichardson. Janelye is an administrator of a Facebook group called Tourette Syndrome Support for Regional Australia.