Billy Jean’s Story:
My name is Billie Jean Bull-Colbourne. I was born and raised in Happy Valley-Goose Bay, Labrador and I now
reside in Gander. Growing up I had never heard of epilepsy or the term seizures. I often heard stories of my paternal
Grandmother having “fits” but never knew what that was.
After I was married, I moved to the Island of Newfoundland and met my biological father. He has epilepsy and I was
introduced to a whole new world.
I spent many years watching my father have seizures. Many times being called by hospital staff and summoned to the
hospital because “he may not make it through the night”. These were scary times. And many times I thought “Thank God I don’t have to put my family through this.” I still thought that Epilepsy was something you developed as a child and sometimes you grew out of it and sometimes you didn’t. Little did I know how my life would change.
In May of 2020, just after the Covid Pandemic began, I was the Assistant Manager of a large retail store in Gander. My
manager was leaving, and as many stores were closed, and ours was considered essential, we were even busier than
normal. My stress level doubled and that’s when the confusion and missing time started. I had no idea what was happening to me. My doctor thought maybe it was my heart, as I have a history of a mild heart condition, so he told me to start monitoring my heart rate during these episodes. Well, during these episodes, I would black out, making this impossible.
When I finally had a day off after working 60- 70 hours a week, pretty much every week, my husband started noticing “blank” looks on my face, and he decided to check my pulse and blood pressure. All of that was fine. When I would become aware again, I did not know what happened and I always felt very tired.
My family doctor felt it was time to send me to a neurologist. So in July 2020 off to Grand Falls I went for an appointment with the local neurologist. He sent me for an CT, MRI as well as an EEG. When he called me back to his office, he confirmed my worst fear. The EEG results showed I had abnormal activity in the left Temporal Lobe of my brain. He was also my father’s neurologist and knew my family history. He started me on medication immediately and proceeded to tell me that my epilepsy would progress and I was at high risk of Grand Mal seizures and that I would most likely experience the same things I had witnessed my father go through for the past 20 years.
Next, I had to tell my grown children what was happening. They both lived on their own by this time. I knew exactly how they were going to feel and what they would have to experience. My daughter probably had the worst reaction. It took almost a year for her to admit to me how hard it was for her. She finally told me she had always considered me to be“ Superwoman”, and to come to terms with me being mortal was hard for her. That broke my heart.
By August 2020 I was sent home by my new manager due to my seizures, as they were progressively getting worse. Staff members had found me having seizures on the stairs, on ladders and they once caught me as I was about to fall out through the receiving bay doors. This was getting scary and the medications weren’t working. So back to Grand Falls I went. The neurologist increased my medication and took me off work for a while. He even told my husband maybe he should take me on a trip to relax and get a change of scenery. So we went to Halifax to visit our son and meet his new girlfriend.
When we got home, things had not improved. I was still having multiple seizures a day and taking several falls. I had injuries to my back, knees and hips. My family doctor had decided that it was not safe for me to return to work, contacted my neurologist who once again increased my meds, and sent me to physiotherapy and massage therapy. I have not been able to return to work since.
Medications have decreased my seizure activity, but I am still having anywhere from 3 -10 seizures a day. I have had to come to terms with not working anymore which has been very hard for me. I feel like I have lost all of my independence and have become a burden to my husband. I need someone with me 24 hours a day, as my seizures can happen at any time. My husband is my main caregiver and only gets a break when a respite worker comes 14 hours a week. He gets very little sleep and is always on his toes. My husband is my rock and without him I am not sure what I would do.
The way I have been coping is by learning more about epilepsy and trying to help myself and others like me.
I found the Epilepsy NL Facebook group and it has changed my life. I have been able to participate in the HOBSCOTCH program which has taught me tools to cope with memory and how to manage my anxiety. I have had the opportunity to take part in a survey via the Ontario Brain Institute and a UK based company which led to me being part of a panel of patients and professionals. The panel was selected to develop a list of questions people with epilepsy would like researchers to focus on to get answers. I obtained the final report and reached out and shared it with as many people as would listen to me. I sent copies to a contact with CBC’s Here and Now, our Minister of Health, Dr. John Haggie, and even a Neurologist resident I happened to meet at one of my husbands’ appointments in St. John’s.
As a person with epilepsy, I have come to realize that our little province of Newfoundland and Labrador needs support when it comes to epilepsy research, funding and education. There are still many in our province that know nothing about epilepsy or still label us as a result of lingering stigma. I have even had a family member tell me they will not go to a store with me because I “embarrass” them when I have a seizure!
I am determined to use my time to fight for more for our epilepsy community. We deserve better. Epilepsy has been around for so many generations that one would think there would be much more education available about it. Sadly, it seems it has been put on the back burner for way too long. It is now time for us to fight the stigma and fight for change.
I am asking you to join with me in talking about Epilepsy and doing your part to help Epilepsy Newfoundland and Labrador bring awareness to our province