This First Person column is the experience of Ken Pilon, who lives in Regina. For more information about CBC’s First Person stories, please see the FAQ.
It seems like I’ve been cheating the Grim Reaper my whole life. I was 11 months old when I almost died due to dehydration. At 19, I was in a four-car pile-up on a highway, and then I had cancer at age 45. But no experience reshaped my life or my outlook quite as much as learning that seizures had been hijacking my brain for years, and no one knew — that was, until I blew through a red light on a trip out-of-town for a comedy show.
That’s the last thing I remember before I woke up six hours later in the emergency room, only to hear that I’d had a very serious and potentially lethal grand mal epileptic seizure.
I was 51 at the time.
Brain seizures occur in a variety of ways and with different intensities; they also have the potential to damage the brain. Based on the medical data gathered by my neurologist, he believed I had been experiencing multiple seizures every day for most of my life.
When the grand mal seizures started, I never was conscious of what was happening. But my spouse, family and friends would see them happening. With the thrashing movements of my seizures, my skin turning blue and foaming at my mouth, I can only imagine how scary it must have been. My spouse, my friends and my children lived with heightened vigilance whenever I displayed a behaviour that could be taken as a precursor to another seizure.
We tried a host of different drugs, but my grand mal seizures continued for 11 years. After I had one grand mal seizure that lasted 16 minutes, doctors decided to try brain surgery.
They ended up removing a piece of my brain about the size of a golf ball. From that point on, my life was seizure-free but I changed in many ways I hadn’t expected or prepared for.
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I had once been the top life insurance agent for my company in the entire country.
Now I was forced to retire long before I was ready, leaving me with wide gaps where I had to figure out how to fill my days. I needed more sleep each day to help my brain heal, so I often had to miss social gatherings with family and friends. My short-term memory became poor. Even now, I regularly ask questions over and over, and I often repeat the same mistakes.
For something as simple as buying groceries, I need a list for three or more items, yet I still make numerous errors with such a simple job. It has been — and it still is — embarrassing.
I’m much more emotional, and tend to choke up and sometimes cry when I relate to a story with deep meaning or when I try to sing a familiar song. My social skills are sometimes lacking, and I can say insulting or inappropriate things.
I feel guilty that my spouse had to become my caregiver. I might be a grown adult, but sometimes I feel like I’m a four-year-old that she has to help guide. It seems so unfair to her.
The surgery altered my brain in such an extreme way that at one point, I went into a downward spiral. I slid into a deep, dark place — so dark that I attempted to end my life. My spouse rushed me to the hospital where they were able to save me. It was the fifth time I’d come so close to death.
After that, I got more help and tools I needed to come to terms with the ways I had changed.
A new psychologist helped me turn the corner. I struggled with words, but he helped me learn how to communicate better and we trained my brain to reframe my thoughts in a positive direction. I also learned to focus on things for which to feel gratitude and how to find joy in my life, with my family and in my friends.
When I realized the harm I had done to my spouse, I broke down and I sobbed.
I came to realize what I had tried to take away from my family and my grandchildren. I may not be who I once was, but I still have value in their lives.
Brain surgery may have taken some thinking and memory skills from me, but I know now I’ve kept the most important things — my value, my self-confidence, my positive contributions to society, my worth, and my love.
It has been a struggle to reach this point in my life, but I am glad I did, because I have more life to live.
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