Michelle’s Story
My journey of being an epilepsy survivor is 41 years long.
At 9 years old, I took a serious grand mal seizure and was admitted to the local hospital. I had no idea how I got there or what had happened. As my parents waited for answers, I continued to seizure regularly and intensely. They made the decision to independently contact the IWK Children’s Hospital in Halifax, Nova Scotia and then got my Dr to send an official referral.
Early into the testing at the IWK, my parents were being braced with the possibility that I had a tumor because a dark spot was visible on my brain. When the diagnosis finally came that it was epilepsy, my parents were relieved. The expectation, given the severity of my seizures, (as presented by the medical team) was that I would not necessarily live a “normal” and productive life. My parents refused to believe that. I was placed on medication and taken home.
Despite finding a diagnosis, the trauma of the process lingered on in me long after. Every parent of a child with epilepsy should understand the devastation a child feels after not only going through invasive testing, but discovering that they have a serious medical condition that they will have to live with for the rest of their life. My testing was done in strange, cold rooms without my parents. I can still remember it vividly (41 years later). I saw young children with cancer and life threatening illnesses for the first time in my life. It was confusing and terrifying. In 1980, EEG’s did not have the same kind of electrodes that they have today! When it was all over, I felt alone with a condition that I did not understand.
When Tegretol came into my life, my seizures were mainly controlled. When seizures did occur, they were few and far apart, but significant. Waking up disoriented, often injured, exhausted, and in extraordinary pain was paralyzing. Yet, I went on to graduate with honours and scholarships in High School, obtained my undergraduate degree at the University College of Cape Breton and was even Valedictorian of my class. I’ve since also obtained my Master’s Degree in Education. I always felt like I had something to prove. Always.
I met my husband in 1991, we married in 1997 and we knew that having a family was part of our future. Being an epileptic – or high risk – mother would mean a lot of research, preparation, and careful following of a pregnancy and delivery plan. A pregnancy team was put together for me including my Neurologist (Dr. Mark Sadler), my GP and a gynecologist. It was felt that Tegretol was the right medication to stay on during my pregnancy. I would get extra ultrasounds. My birth plan included Vitamin K in the final weeks to prevent hemorrhaging and an epidural to keep me relaxed and prevent my body from going into shock and seizuring during delivery. On June 16th of that year, my now 22 year old son Jadon was born. He was my little miracle and everything I went through to get him was worth it.
By the time Jadon was 3, there were noticeable changes in how I was able to tolerate Tegretol and I began having periodic seizures. They were intense. Changes in medication and subsequent uncontrolled seizures for the next few years meant shifting my focus away from having any more children. On the day of my son’s Pre-school graduation, I seizured in front of him. It was one of the most devastating moments of my life. I missed my baby’s graduation and I was determined to get healthy again.
It took years of trials to finally find a combination of medications that controlled my seizures again. I owe this and much of the success I have had managing my epilepsy to Dr. Mark Sadler. As of right now, I am over 12 years seizure free.
In 2005, I made the decision to no longer work for someone else, but to become an entrepreneur. Contrary to what people might think, starting my own business was not just because I had the desire to be a business owner. It also meant having the ability to accommodate my epilepsy. Epilepsy often requires a combination of accommodations and drugs. I had my off days that could not be explained to or understood by others. I hated disclosing to employers that I had epilepsy. Sometimes I didn’t, even if it meant putting myself at risk. I knew the stigma. I was always afraid that people would not allow me to work with children if they knew I had epilepsy.
The irony is that my career is working with and advocating on behalf of students with Learning Disabilities. I, however, did not disclose to most people that I was an individual with my own hidden disability. It took years before I finally began to tell my story. Now, on the weekend of my 50th birthday, I look back on everything it took to get here – being a mom, becoming a successful entrepreneur of my tutoring company LearnAbility Nova Scotia, having a career in which I help 100’s of kids every year across Nova Scotia, and above all staying healthy.
The fact that medication works for me is a miracle. I am grateful every day of my life that a combination of meds is not only working, but has most likely saved my life. My seizures are severe and dangerous. There is no possibility of me ever coming off medication and so, it has to work for me. It is why a cure for epilepsy is so important for so many of us. Epilepsy is an incredibly unpredictable condition with dangerous and potentially life threatening results. I have worked hard to get here.
Here in Cape Breton Nova Scotia, we have done a lot of advocacy and education in the community since I became comfortable with disclosing my condition. I’ve fundraised for a cure for Epilepsy with Epilepsy Canada, but I know I still have a lot more to contribute and so can you.
The courage of those living with epilepsy,
inspires us and fuels our journey.
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