Véronique’s Story
In Grade 5, I had my first seizures. My friends at school, my siblings and my parents (but also myself…) didn’t know at first what they were. For part of my childhood, I had been a hyperactive and unpredictable child. So at first it seemed like I was seeking attention, but because I was “acting” this way here and there at school, my siblings eventually told my parents, who then decided it was time that I saw a doctor.
I had my first EEG test. It was quite frightening for me at first, especially when the technician placed the electrodes on my scalp. I then saw a neurologist at the hospital in Timmins, in northern Ontario. When the results came in, we went for a consult at my family doctor’s office. With my tests results and the seizure I had right in front of him at his office that day, the doctor saw that I had, in fact, 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 had epilepsy.
Frequently, I would go for blood tests, follow-ups with the doctors, 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 always 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 one gave me mood swings and made me 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 until I was feeling better.
When I was in Grade 8, I spent a month at a London, Ontario hospital where I met with some of 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 some 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. Until today, we don’t know where that scar tissue came from…
That day was probably the moment where I, surprisingly, didn’t over-think a decision I was about to make. I said “yes” right away for the surgery because I wanted to get rid of those seizures and live a “normal” life. 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. The next day, I was on the train with my parents 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 nevertheless able to finish Grade 8 with all the other students and started high school that September. I kept taking anti-seizures meds for a year, then went later for an EEG, which showed very positive results.
Although I have been seizure free since March 10th 2000 (*knocks 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 of 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 almost 37 and live in Ottawa, Ontario. I have been able to get my driver’s license, 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 poetry project that I started a few years ago, based on my experience with epilepsy.
I have been blessed by so many people (family, friends…) who have been very supportive and kind 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, but also to reach to others if things become too overwhelming.
March is Epilepsy Awareness Month. It is important we talk about Epilepsy throughout this month, but also throughout the year, in order to end the stigma around it, but also to raise awareness. It is also crucial that a cure for epilepsy is found, to improve the quality of life of many people suffering from it, as it affects their daily life, and for some, their life expectancy.
The courage of those living with epilepsy,
inspires us and fuels our journey.
Your gift will help us to continue on the road toward an epilepsy cure.