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Karl’s Story: The Gift of Epilepsy

Karl’s Story

In October 1997, when I woke up on a bed in the middle of a busy hospital I would not have said Epilepsy was a gift. In fact, I think my first words are not appropriate for this story, however that was when I was a 21 year old soldier on a peacekeeping mission in Bosnia.

A Soldier Re-examines His Life

Waking up that night, after having my first Tonic-Clonic seizure, I immediately began to think about my career as a soldier and of all the things I would not be able to do anymore. This experience was not my first exposure to epilepsy because I watched how it affected my younger sister’s life since she was 6 years old.

Life was not easy for her, especially as she got older and so I imagined that in addition to not being able to fulfill my duties as a soldier, I was on my way to a drastically altered lifestyle.
At that point of my life, I was a young adult, an infantry soldier, a hockey player, I loved to mountain bike and I never once gave thought to not being able to drive. As many of you reading this can relate, many of the important pieces of my life, those which have defined me, were swiftly taken away.

No driving, no hockey, no mountain biking, no more brotherhood as a soldier and no more control of my life. At that point, everything was unknown and I was not in control. So I did what many other people did when faced with sudden health changes, I started drinking more alcohol, abusing drugs and mistreating people who I was close to. I suppose this behaviour was to protect myself from the truth that what I should have been doing was taking care of my health, owning my situation and looking for more wholesome ways to be grateful that I was alive. If I am being honest, at that time I was still fairly healthy given the circumstances.

After a period of time living in anger and denial, I began to process the negative emotions via competitive running. I eventually got very good at this and over time, learned that as I took better care of myself, my seizure frequently and other issues such as fatigue decreased.
This began a new focus and I quit all of the drugs, alcohol and most other harmful behaviours cold turkey. There’s nothing like motivation to help stay on track. As time went on, those who I thought were friends from my harmful days of partying slowly slipped away and they were replaced with people who, for the most part, took better care of themselves and actually cared about me. At this point, I was mountain biking again, running in local races, hitting the gym regularly, slowly improving my nutrition and lifestyle habits such as sleep.

On Finding Love

Though positive changes were happening, I was still experiencing seizures, but not to the extent of when I was not caring for myself. Around this time, I fell in love and would soon get married. Jen, my wife, was the one person who could truly listen to me, and during the first year we were together I poured my emotions out, often times waking in the middle of the night sobbing after dreaming I was having a seizure. Other times I would dream about struggling to get to safety after a seizure, or about people surrounding me, watching as I helplessly tried to get away from the whispering and judgements of strangers.

Jen was always available for me and I feel as though this was a time for healing. The more I talked about my experience with epilepsy and the more self help books I read I found new ways to take care of my health. Yoga and meditation are two such additions and soon I found myself enrolled in schooling to become a Personal Fitness Trainer.

On Healthy Habits

Over time, new habits replaced old patterns and my seizure frequently decreased yet again. As I became more aware of my daily routine, what worked and what didn’t, I learned that when I had regular quality sleep, consistent wholesome nutrition and time focused towards moving my body I was much healthier. I felt more in control at this time and when I began spend more alone time in nature, I found my prescription so to speak.

Living with epilepsy has not been easy. I’ve been in enough ambulances (and one helicopter) and have had more than my share of hospital visits. Luckily, I eventually learned that when I have absence seizures during the day, I will likely have a tonic-clonic seizure later in the evening, so I have never been alone or with strange people upon waking in the confused state as the brain reboots.

As many people who live with the disease know, no matter how controlled we may be, the thought of seizures is always there, and life must be planned accordingly. Work, where we live compared to the services we frequent, planning for holiday excursions, and preparing for the future all involve conversation and the ‘What If’ questions that must be asked. As difficult as this can be at times, it is important and I feel it helps us as we learn to navigate life.

Fast forward to today, now at 40 years old, I am a happily married father of beautiful twin girls. Through epilepsy I have experienced pain, frustration, loss, worry, embarrassment and fear, however I have also learned to be empathetic towards others and I have a strong sense of compassion for those who struggle in life. This is why I say that for me, Epilepsy has been a gift.

In our lives, we experience a variety of emotions, we fall down and we struggle. I believe that as we evolve as people we are exposed to life in a variety of ways so that we learn, grow and move into a more conscious experience. Living on purpose, even in the face of our struggles is what we are here to do, and Epilepsy has taught me to be thankful for each day.

Had I been guided down a different path, I would not have had the same experience. It’s the combination of events in my life which have shaped me, and for that I am thankful. In my work as a Wellness Coach and Personal Trainer, I feel that my life experiences allow me to empathize with my clients while holding for them a knowing that they will one day come to know peace as well. Perhaps my gift will one day help others find the gift in their experience and that is what motivates me to take care of my health each day.

As I look forward to the next 40 years of my life, I am excited by the things I am able to do, rather than being worried about the things I can not do. I wake up each day looking forward to another opportunity to grow, to learn and to have a positive impact in the lives of others. Epilepsy will likely be with me for the remainder of my time here on this earth, so I plan to make the most of what I have so that I can live a full life and in the process, I have an opportunity to model strength for my children. As long as I do these things, I will have lived a fulfilling life.

Two Questions

I will leave you with the two questions which I ask myself each day…

What is the one thing you can give up today that does not support you?

What is the one thing you can do today that will move you in the direction you want to go in life?

I wish you the best of health.

  1. Amy macphee
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    Living with epilepsy brought me anger as well most of my life. I felt, what if they don’t like me or maybe I’m not good enough, or will they talk about me because I don’t know how to socialize because I’m different. I had all kinds of thoughts and questions running through my mind, and I was loaded with more and more drugs every few months from the doctors who didn’t know what to do with me.

    I couldn’t think properly. My mind raced and I barely slept. I was known as nothing but a problem. I turned to drugs and alcohol to ease my pain, but it made my life worse. I can’t even to explain the life I led, probably I would have to write a book.

    To everyone who is blessed with epilepsy:
    When you leave the anger and all the other bad stuff behind, you’ll realize that being given epilepsy it just makes you a stronger more sympathetic passionate person who has something that makes others stronger, too. No matter who you are, you are the special one. Yes you live differently but you have a story like no other so be proud.