Catherine’s Story
I will turn 39 in March and 34 of those years have been spent living with epilepsy. My first observable seizure occurred on a February night in 1990. I was 5 years old. Within days the diagnosis of AVM was delivered, and a neurosurgeon recommended I be sent out of province for surgery. The day after my 6th birthday, my father and I boarded a plane with an unknown future ahead. I was very excited; none of my other siblings had yet to be on a plane! During the first course of the first craniotomy, 2 other AVMs were found. I was left to recover from the first surgery and a week later, I returned to the OR.
The hope I would stop having seizures after the AVMs were clipped was not to last. From age 6-13 I tried a variety of medications at high dosages, but my Partial Complex/Focal Aware seizure activity was frequent and intense. My seizures looked like a Tonic Clonic however only half my body was convulsing, and I was conscious the entire time. The worst medication side effect I experienced at a young age was Valproic Acid-Induced Acute Pancreatitis when I was 8. I was placed in a medically induced coma for almost 2 weeks and my pancreatic function is still tested regularly. Despite these roadblocks I was still able to take music lessons and perform, I took swimming lessons, and was in the school choir. I even had a paper route. At school, a group of classmates called themselves the ‘seizure patrol’ and would gather around me whenever I had a seizure; the head of this patrol went on to become a Nurse Practioner. I did not feel isolated from friends because of my seizures, alone, or left out. For the most part, I would always have an aura, so I was usually able to get down on the floor in time. Well, most of the time. By the time I was 13, it was recommended I return to Ontario for observation at an EMU. I agreed to subdural electrodes after the initial 5 days of EEG. I then agreed to have a section of brain tissue removed during an awake craniotomy. That was an adventure, and one I have never regretted. The Epilepsy specialists were hopeful my seizures would cease or at least change for the better. Due to the location of the surgery, I had also agreed to the chance of requiring rehab. I spent 6 months rehabbing my right leg; I had to teach it how to walk again.
Throughout junior high and high school, I had infrequent seizures to the point where I was weaned off all medication for a year. I played in the concert and jazz band, was on stage again and got my first job when I was 16. When the seizures returned it was as the specialists had predicted, they had changed. My recovery time was quick, and only my right leg would convulse. I also began having auras without a full seizure. I was able to leave home, get two undergraduate degrees and become a teacher. In my 20’s and early 30’s, I taught in different parts of Canada, and two countries in the Middle East and was able to travel to parts of the world I had only fantasized about seeing in person.
2016 began a new period of my life with epilepsy. I had never heard of Postictal Psychosis until I had recovered from it. After my second occurrence in 2018 it was clear repeat incidents were possible and after the 3rd occurrence, I was put on medical leave from work and a re-evaluation of my seizures began. It was during this period I registered for group CBT therapy for Adults with Epilepsy. It was a life-changing choice and I’m so glad I made it. Covid 19 has delayed many medical procedures but in the summer of 2021, I was given the green light for depth electrodes to map new areas of my brain. As one of the depth electrodes was removed, I suffered a small brain hemorrhage and another 6 months of rehabilitation of my right leg was required. I was heartbroken when it was determined I was not a candidate for further surgery, VNS, or DBS; a large part of me felt foolish for having had hope in the first place.
I returned to part-time work in the Winter of 2022 and see a bright future again. I hope to one day work as a Counsellor for individuals and families coping with the impacts of Chronic Illness. As an adult, I have been hard on myself and sometimes felt isolated and alone in my struggle. I want others to know regardless of what condition they are living with, they are not alone. Talking about ‘it’ helps, most times in ways you never knew you needed. Even though I will most likely live with breakthrough seizures for the rest of my life due to the large amounts of scar tissue in my brain, I do have hope that the new technologies, treatment therapies and medications in development will continue to improve the quality of life for others living with Epilepsy.
The courage of those living with epilepsy,
inspires us and fuels our journey.
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