My journey with dystonia, though unknown at the time, began the very day I entered the world. As part of a complicated birth, I was born not breathing and for the first several minutes of my life doctors worked hard to clear my lungs. After an extended period, they were finally successful. However, it was a happy moment that would soon be accompanied by some life-changing news. Just days after my birth, doctors informed my parents that I had suffered brain damage due to a lack of oxygen. My official diagnosis was cerebral palsy (CP), a non-progressive condition characterized by impaired muscle coordination and potential cognitive challenges. The only symptom that initially led doctors to believe I had CP was the fact that my left hand was clenched tightly to my chest. As an infant, some of my milestones were either delayed or never met, which seemed to prove the accuracy of my diagnosis.
It was not until my pre-teen years that I, along with my family, noticed significant changes in my symptoms and abilities. I could no longer use a walker, something that I had been capable of since I was a toddler. In addition, my tremors progressed throughout my body and my legs started twisting to the left. These worsening symptoms convinced doctors to change my diagnosis to generalized dystonia. With this new discovery, I embarked on a medical journey exploring a variety of medications in hopes to reduce and control the associated symptoms and pain. This was all new to me, as for the first 12 years of my life I had never taken medication in relation to my disability.
Being a pre-teen at the time, I must admit that I was more concerned about the future than I was about the present. One of the first questions I asked my doctor was, “How fast are my symptoms going to progress?” He responded that every case is different so there is really no way of predicting the future. Though I deeply craved a more promising response, I knew that I had to accept that some answers are only revealed with the passing of time.
At that point, I also couldn’t help but wonder if my dreams for the future were realistic. Despite living with a disability, I was always that typical child who wanted to grow up and attend university, pursue a career, and one day have a family. With that in mind, my first major goal was to graduate high school at age 18. However, the pain associated with my dystonia hampered my ability to attend school full-time. Suddenly, it seemed like the task that I once saw as achievable was now slipping from my reach. Knowing my desire to succeed academically, in my seventh year some adaptations were set in place with the help of my family and my school. Through working on assignments at school as well as at home, I was able to keep up with the course material.
Although I still cannot attend school full-time, I am currently a grade 12 honour roll student on track to graduate at the end of the school year. In an effort to further my passion for academics, I plan to attend university and pursue a career in education. As a small step toward this goal, I enjoy volunteering at the Manitoba Children’s Museum. Through my dystonia diagnosis, I have also realized the importance of advocacy. We all have a voice, and we have the power to change lives.
If there was one thing I could say to other teens living with dystonia or any other rare disease, it would be to never give up on your goals. We may not always have control over our symptoms, but how we choose to live with them will forever remain in our hands. Always remember that whether positive or negative, every aspect of our lives helps to guide us on a journey to become who we are truly meant to be.
The Dystonia Medical Research Foundation (DMRF) Canada is the only organization that is dedicated to supporting the dystonia community in Canada. If you or someone you know is struggling with dystonia, you’re not alone. Please visit www.dystoniacanada.org to find out about resources, research, and support.