Gail’s Story
My name is Mrs. Gail Simpson, and I am 31 years old. I have been living with Epilepsy for 28 years and was diagnosed at age three (3). This condition has negatively impacted my life, especially during my formative years, almost having me living without hope as I was not sure what was happening to me during this time.
During those formative years of my life, I was having seizures multiple times a day, every day, and being on medication I would have gone to pre-schooling sleeping for the entire day until my parents came to pick me up. I could not enjoy the things that every child would have wanted to do e.g., Swimming and riding a bicycle. I could not even grasp phonic skills at that age. I was there just existing during all this period. I was constantly monitored and reminded of my condition if I diverted from the norm.
My journey with Epilepsy continued with the trial of different combinations of drugs which undoubtedly had not seen a glimpse of hope. I have done numerous brain waves and 24-hour video EEGs which at all times show spikes on the right side of my brain. There were drugs that I was extremely allergic to such as Dilantin, Tegretol which causes rashes to appear all over my body leaving me almost unrecognizable.
Upon entering high school in 2005, my real struggle started as I have tried to find my identity, considering I have just started to blossom into a young lady, and I wanted to be part of the others and what all young girls desire (social life, career and even a driver’s licenses) when that time comes. But instead, I became scared, withdrawn, depressed, and always wanted to be with my family, who was always supportive of me. To my surprise this was not so, as there were friends who were always around when I needed their help.
During the five (5) years of high school, I had episodes of seizures battering my brain every morning on my way to school which resulted in me sleeping for long hours, missing the early morning classes, and sometimes being drowsy throughout the day.
The most terrifying experience for me was in 2006 when I had “STATUS EPILEPTICUS” at age 14 where I spent seven (7) days in the hospital under close monitoring. During this time, I lost my memory temporarily which affected my family so badly. My case has drawn a lot of attention in the medical field, having several neurologists requesting to be a part of the decision making which was led by Dr. Amza Ali. By age 17, I weighed 205 Lbs. However, with the careful research and trial of medications by my Neurologist to find the most suitable combination for my seizure which I am currently on is Lamictal, Topamax, and Folic Acid.
I then became SEIZURE FREE for ten (10) years, lost all my weight, gained my self-confidence, and was still managed by medication and trying to “ catch up” in life trying to do things that I had never done before and what everyone and young lady would want to experience. Thanks to my parents who would have taken me to places and sat in that car and allow me to enjoy myself. They both would have gone out to places with me just to facilitate me. By this time, my doctor started the weaning exercise of the medications, but in 2017 my worst year, my worst nightmare embraced me I was traumatized by an incident that frightened me, and this has triggered my seizures taking me back to my childhood days and since then I am here again counting seizures at least twice per month.
I know Epilepsy has put a pause on my life, but I cannot imagine what would have happened to me otherwise. I am a Christian and I believe that everything happens for a reason, and I chose to believe that this is not something I will ever have complete control over. I can take my medications on time twice a day and minimize stressors and keep track of my sleeping and eating habits but at the end of the day, I could still have a seizure. So instead of being fearful of that, I do what I can, and I let God take care of the rest.
It was in July 2014 when there was an International Summit hosted in Washington DC, USA in which twenty (20) young adults who have been involved in spreading Epilepsy Awareness, were invited to attend. I have then been selected as one of twenty (20) young adults from United States, Canada, Puerto Rico and the Caribbean Islands (Canada, United States, Jamaica, Barbados and Puerto Rico), to participate in this summit, focusing on ways to publicly inform others about Epilepsy.
As a result of the exposure and information gained at the Summit upon returning home. I decided to get in touch with The Jamaican Epilepsy Association (JEA), where I have been volunteering and advocating for persons with the condition.
In Jamaica being an advocate, I seek every opportunity to spread awareness by doing media interviews (radio & television) planning and organizing Virtual Epilepsy Forums, Epilepsy Walks and also hosting the monthly online meeting which entitles is “ SAFE PLACE” encouraging open discussions and where everyone can feel free to share their own experience and stories about the condition.
My dream and desire were always to live and join a Non-Profit Organization/Network in Toronto, Canada and become a nonprofit leader and also to outreach to all those living with Epilepsy.
In August 2020, one of my greatest dream was realized, when I got married and for the first time “I moved out of my parents’ home”. The Lord has provided me with one of the most supportive and understanding husband who is always just a breath away when I have an episode.
I believe people with epilepsy can do anything that anyone else can do, and I’ve learned to embrace this part of who I am. Epilepsy is a scary condition, and it’s not easy, but it has made me so strong, and incredibly grateful for the things I have been blessed with in my life. Thanks be to God who has given the knowledge and understanding to doctors to assist persons with this condition and to the amazing persons surrounding me, who love and support me and see me for more than my Epilepsy. Finally, thanks to my inseparable family …Mom, Dad (now deceased), and brother, and my extended family and friends.
Finding a cure for Epilepsy would mean “FREEDOM” for me. “I also know that people with Epilepsy are good at hiding it, but I am not ashamed of it. For example, I am not able to drive. Nonetheless, I know that epilepsy is part of who I am, and I am ok with that. I surely hope that I do not have epilepsy for the rest of my life. But I know that with God in the midst, with an abundant number of scientists and physicians working towards a cure I know that we will find a cure. We just have to pray, stay positive, and continue to advocate for Epilepsy Awareness.”
Note: Because of this condition I am not privileged to qualify for a health card, but the NHF has assisted me with the monthly purchase of my meds which is very costly.
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.