Kate’s Story
On the morning of March 22nd, 2022, I was at a cafe, poised to delve into an omelet. The next thing I knew, I was lying on the floor, gazing into the brilliant blue eyes of a freckle-faced stranger. Her beauty momentarily distracted me from the throbbing pain in my head and jaw. "Do you know where you are, Kate?" Asked the seemingly divine woman. "Heaven? Am I in heaven?" I might have replied had I the presence of mind. Instead, I simply said, "No." My voice sounded distant, as though spoken from another dimension.
To my disappointment, I soon realized that I was not in heaven. Rather, I was sprawled on the cafe's floor like a glass of spilled milk. More disappointingly, the woman was not an angel; she was an EMT. "You've had a seizure, Kate," she said. "We're going to take you to the hospital."
At the hospital, I was poked, prodded, and scanned as a team of physicians worked to determine the seizure's cause. Drug use, internal hemorrhaging, tumours, and more were swiftly ruled out. While being questioned about my medical history, I mentioned that I may have experienced undiagnosed absence seizures as an adolescent. Growing up, I would sometimes uncontrollably lose awareness of my surroundings for around ten to thirty seconds and stare blankly into space like the physical embodiment of a buffering video. My parents and peers thought that I was an absent-minded teen, but my doctor confirmed that I had been experiencing textbook absence seizures. Given my patient history, the unprovoked nature of the seizure, and my EEG reading, I was ultimately given a diagnosis of juvenile myoclonic epilepsy.
Nearly three years have passed since that day at the cafe, and I'm incredibly fortunate to say I've been seizure-free since. A drug called levetiracetam, a supportive community, lifestyle adjustments, and dumb luck have kept my seizures at bay. However, despite being seizure-free, epilepsy has remained a perennial challenge in my life. What many don't understand is that epilepsy is more than just seizures. It's also the anxiety that stems from worrying about when and where another seizure might occur. While I've thus far been seizure-free, my neurologist and family physician have warned that I will almost certainly experience more episodes in my lifetime. Knowing this, it feels like there's a time bomb in my head, and I can only hope it doesn't detonate while I'm doing anything but sitting or lying down. Moreover, I wonder how my brain is affected by the condition, even in the absence of seizures. I worry that a slow but persistent current of abnormal electrical activity is eroding my cerebral infrastructure. Somedays, it feels like my brain is operating on spotty wifi connection. I struggle to find words more often, and I've started to stutter in the last year. I suspect this is due to epilepsy, the drug I take to manage it, or both.
On top of the anxiety, epilepsy is also grieving the life you could have lived. After being diagnosed, I ultimately left my job as a wildland firefighter because I felt continuing was too big a health risk. The job was a minefield of seizure triggers as we often worked 14 to 16-hour days doing strenuous tasks in highly remote settings. Rarely did we sleep more than 7 hours per night while on deployment. Nonetheless, I loved the job and felt a deep sense of aimless anger when epilepsy interfered with my ability to do it. The anger has subsided, but the feeling of loss remains.
Most of all, I think epilepsy is the pain of coming to terms with the fact that there is no such thing as recovery from the condition, only acceptance of it. Finding ways to have hope in the face of this reality is still something I struggle with.
While learning to live with epilepsy has been challenging, it has also gotten easier over time. Since being diagnosed, I've nearly completed my undergraduate degree at the University of British Columbia, I've written my MCAT, and I plan to apply to medical schools this summer, hoping to eventually work as a rural family physician. At the same time, I've continued to live my passion for the mountains and outdoors by running, hiking, backpacking, cycling, rock climbing, and more. Since being diagnosed, I've formed many friendships, deepened existing relationships, and gained a greater appreciation for the little things in life. And since being diagnosed, I've had experiences that would make me want to live my life again one thousand times over-- even with this condition-- just to experience them once more. I mention things not to boast, but to show that life can go on after being diagnosed. After learning I have epilepsy, I came to view the world in terms of limits rather than opportunities. Slowly, in part thanks to reading the stories of other people living with this condition, that mindset has receded, replaced by one of gentle acceptance.
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