Dystonia My Friend

Written by Priya Sall January 2026

"Dystonia, my friend". Those were the words that the doctor at the BC Children's Hospital Tone Management Clinic said to me while my legs were on fire during the physical examination.

"Well, that explains everything" I thought after I left the hospital. It made sense to me. The pain

had gotten much worse by this point, and I had started to worry about my ability to function.

According to the doctor, it was a miracle I could even get out of bed, which is very difficult to do for people who have the painful physical challenges that I have. After graduating high school with Honours and an average of 87.85% (an A), and later dropping out of KPU, I finally reached out to my BCCH team and booked the appointment.

The pain was a burning pain, something between my legs being on fire, being eaten by acid, and chewed up by an animal from the inside. A near constant thorn in my side since I was weaned off Clonazepam within weeks instead of the 6-month tapering schedule I was on. I was back on it after I started having Seizures, which got so bad I was rushed to the Hospital in an Ambulance.

All that was a few years ago. I'm still on Clonazepam, the dose hasn't changed since I restarted, but now I've started on Baclofen for the Dystonia, (which is when my Muscles contract) and the muscle tightness and stiffness that comes with cerebral palsy, (the reason I was on Clonazepam to begin with) which I might be weaned off of again.

Finding Government funded support is hard, as options are limited to non-

existent after you age out of MCFD's system. Even if you have an intellectual disability, FASD,

or ASD, the province still won't fund the healthcare and therapies they did when you were a

child. This is a problem for those like me who need massage and physical therapy to function.

But Even with these challenges, I'm moving forward, with plans of applying to law school at

UBC's Peter A. Allard School of Law sometime in the future. I'm moving forward, reaching out

to a bright future I know is in my grasp.