Carpe Diem! How I learned to seize the day despite my epilepsy
by Ben Reeve
I was born in London, Ontario, and grew up in Ilderton, Ontario. I am 33 years old, a diehard Toronto Maple Leafs fan, and I love music and video gaming. I have been a registered nurse since 2017, predominantly working in long-term care.
My nursing career may not have been. My journey with epilepsy began on May 24, 2018, at the age of 26, shortly after I became a nurse. If my seizures had begun at any other time in my life, I probably would have pursued a different career path. My backup career was music and meteorology. But, then again, I don’t think there is ever a good time for epilepsy to strike.
I had just started working a part-time night shift. I do not recall ever being up all night prior to my career. I am an early riser by nature; sleep hygiene has always been important to me.
My first seizure happened as I was having breakfast and reading the news, as I usually do. I was sitting, and I began having difficulty reading text. I looked ahead and the visual symptoms of my first documented tonic clonic seizure began. My mom heard some odd noises, saw my seizure beginning, and helped lower me to the floor. Dead weight is dead weight, and I hit my head. I have a scar above my left eye to memorialize that day.
I went to the emergency room. My first memory was being told by the paramedics not to touch my head. Of course, I didn’t listen and briefly freaked out at the blood. I also recall being more fearful about losing my ability to drive than I was about my health.
Having epilepsy makes the body do a balancing act between seizure management and side-effect management. It’s hard to find the right combination. After three seizures in eight weeks, I was started on Keppra, slowly increasing from 500mg to 2000mg twice daily. The adverse effect known as “Kepprage” was my biggest challenge. I was short-tempered and more likely to respond negatively to anything.
I had been seizure-free for about a year and a half, and then I had one in November of 2021, which I attributed to work stress and getting married. Even happy events can be stressful!
Because of the negative side effects, and the fact that I did not see any improvement with Keppra, I asked to switch off Keppra, replacing it with Brivlera. So, at that point, I was on clobazam and Brivlera.
I finally chose to stop night shifts in 2022, and in January 2023, I began having nocturnal seizures, not diurnal. Despite my seizures, I needed the circadian shift. I was averaging monthly seizures, which is high for me. As a result, I was put on lacosamide. Since I’ve been taking lacosamide, I’ve had two seizures. One of those seizures was caught while I was at the epilepsy monitoring unit in July of 2024. Then I had a seizure in October of 2024. Currently, I take clobazam, Brivlera, and lacosamide.
Today, I am trying to keep my stress and temperament under control. Quality of life is important in managing my epilepsy. I recently began working out again, and I signed up for a ball hockey league in Sarnia. I am very excited about spring. I continue to take daily French lessons with Duolingo, it’s helping me strive to be a polyglot.
My music helps me cope with my epilepsy journey. I wrote a song about it entitled “Purple Shadow.” I wrote the song about my own experience, but I think it can resonate for anyone with a chronic disorder or illness.
Having epilepsy has affected how I view my nursing career. It is imperative to take care of yourself before you try to assist someone else. I’ve been exploring going into palliative care, which is not only focused on end-of-life care, but also on quality of life. I have learned through my epilepsy how important it is to have a good quality of life and I feel I can make an important contribution as a palliative care nurse so that I can teach patients how important it is to enjoy one’s life, in whatever way works for them.
A big part of enjoying my life is “carpe diem,” seize the day!
I found JoshProvides through an online search and began attending the epilepsy support group. The group has been a constructive and nonjudgmental outlet for me. It has helped me communicate better with my family. In fact, my family joined me at a meeting, so they could see first-hand how helpful it is to me. I have learned as the first Canadian to attend, that I have more in common with others in the group than what makes us different. Epilepsy does not discriminate. JoshProvides feels like family to me. I can be vulnerable with my feelings, and many of the members of the group have also shared this sentiment. I’ve learned so much from them.
The group encourages me to keep up with my hobbies, and carpe diem. Being part of this group also helps me in my profession, bolstering my self-confidence, and helping me be a better nurse and a better person.
I feel very fortunate to have found JoshProvides!
