In Grade 5, I had my first seizures. My friends at school, my siblings and parents (and also myself…) didn’t know they were seizures. For part of my childhood, I had been a hyperactive and hard to predict child. So at first it seemed I was playing a role and seeking attention, but because I was “acting” this way here and there at school, my siblings told my parents. They then decided it was time I saw a doctor.
I had my first EEG test. It was quite frightening for me, especially when the technician placed the electrodes on my scalp. I then saw a specialist at the hospital in Timmins, Ontario. When the results were in, we went for a consult at my family doctor’s office. With my tests results and the seizure I had in front of him at his office that day, the doctor saw that I, in fact, had Partial Complex Epilepsy.
Born and raised in a small Northern Ontario town, we knew very little about epilepsy and didn’t really know anybody that suffered from it. All we knew was that some family members on both of my parents’ side had epilepsy.
Here and there I would go to the doctor with my parents for blood tests, follow-ups, exams in different hospitals. For a little while, I had sessions with a social worker who tried to help me accept my condition and work on my self-esteem. It was extremely difficult, given I had a few bullies at school and that my grades went up and down for a while – I was top of the class for many years before I had epilepsy. I could sometimes have four seizures a day, at school or at home. After each seizure, I was very tired. When I was at home, I would go to sleep for many hours, then wake up at lunch time, dinner time, in the evening, or sometimes even during the night…which was confusing and frightening for me.
For years I went for EEGs, CAT scans, and MRIs at different hospitals in Timmins, Ottawa and London, Ontario. I tried many medications. I was allergic to one, then another gave me mood swings and made me look and act like a zombie. I tried massage and chiropractic therapies and even natural healing, but nothing worked. At the end of the 90’s, the neurologist in Timmins even suggested I stop any intense exercising or sports, avoid alcohol, intense stress, for a while – until I was feeling better.
When I was in Grade 8, I spent a month at a London, Ontario hospital where I met with the best neurologists. They took me off all of my meds, because they wanted me to have seizures they could monitor. I couldn’t get out of the hospital and had to carry an EEG kit with me everywhere. There were buttons all over the floor so patients could press on them in order to record their seizures. Needless to say, I had lots of seizures at that hospital, but I was under the care and supervision of the best specialists.
After almost a month at the London hospital, my parents and I met with a neurosurgeon, who explained that I was a candidate for what he called a “Temporal Lobe Resection” surgery. The tests revealed that I had a scar tissue on the right temporal lobe of my brain, which was causing the seizures.
That day was probably the moment where I, surprisingly, didn’t over-think a decision I was about to make. I said “yes” for the surgery because I wanted to get rid of those seizures. I was very scared, but I trusted the team of experts with whom I had spent lots of time.
The surgery was scheduled on March 10, 2000 and lasted 5 hours. My parents had to wait all that time in the waiting room! The next day, I was on the train with them to go back to Northern Ontario.
As I was recovering from the surgery, I didn’t go back to school until mid-Spring, but had a tutor that helped me catch up on school work. When I went back to school, I was feeling anxious and a bit overwhelmed. I was able to finish Grade 8 with all the other students and start high school that September. I kept taking anti-seizures meds for a year, then went for an EEG, which showed very positive results.
Although I have been seizure free since March 10th 2000 (*knock on wood*), I still feel that epilepsy is a tough subject for me or my family to talk about.
For so long I hid my past and my experience, because I was scared what other people might think of me if they found out. I always preferred talking about it (whispering about it, I should say) to a few close friends and family members.
I now realize that these experiences have shaped the woman I am becoming today. I am now 30 and live in Ottawa, Ontario. I have been able to get my drivers licence, go to university, travel and become independent. Sometimes, I get headaches, I get very anxious, I fear epilepsy might come back or I have nightmares, but I try to focus on the good things in life, on my well-being and projects, and to live day by day.
I have been working in the publishing field for years now. Today, I wish to help and encourage others with my story. I am also working on a project that I started last summer, based on my experience with epilepsy.
I have been blessed by so many people (family, friends…) who have been so supportive throughout my journey.
What I could say to people that are suffering, is to focus on the good in your life, to hold on and to never lose hope.