Dealing With the Loss of Identity

Growth is painful. Change is painful. But nothing is as painful as staying stuck where you do not belong.
N.R. Narayana Murthy

I feel compelled to share my story for two reasons…firstly, I know that each time I talk about my experience, it brings me one step closer to healing the scars that have been present in my life for so many years. Secondly, by listening to the stories of many other community members, I have taken helpful nuggets of wisdom from each of them and I feel that perhaps my story can possibly help someone else step forward into growth and healing on their journey.

While peacekeeping in Bosnia in 1997, I landed in the medical unit after having a violent tonic-clonic seizure and when I woke up on the hospital bed, my life came crashing down with the news of what had happened. As a young and proud infantryman I knew that my career as a soldier was likely over and in a few short days, I was loaded up into the back of a truck and hauled away from my brothers.

I can still remember that day. I can vividly see the image of the century gate closing and I remember the heavy feeling that I let my brothers down. I struggled with denial, not accepting the fact that I would be living with epilepsy for the rest of my adult life, and during this time I watched from the sidelines as my brothers continued their service, doing all the things that I so desperately wanted to do. When they went off to jump school, I cried myself to sleep at night because I knew I would never be able to call myself a jumper, and when they went on exercise, I remained back at the base, alone and in a state of depression that continued to build.

During this time, running turned into therapy and I eventually qualified to represent my battalion at the national military track and field championships, only to be turned down because they needed me to stay and help prepare for a domestic deployment in Ontario. For me, this was the final straw and I broke. I had found a way to proudly represent my battalion and it was taken away from me. From there, I went down hill quickly.

Soon after I was released from the military and what followed was a 3-4 year exercise of feeling sorry for myself, drowning my sorrows in whatever drink I could find and topping that off with drugs and simply running amuck with little care for what others thought of me.

It wasn’t until I met my wife when things would begin to turn around, and in the early years of our relationship, my emotional healing began. I’m not going to lie, I still struggle, at times and I’m still healing and living with epilepsy but each day I learn more about myself and I try to be positive.

There’s so much to epilepsy that can make life difficult. The stigma which is still present in our culture is often difficult to deal with, and as many veterans can relate to, as an invisible illness, people who live with epilepsy are often misunderstood. Seizures are painful physically and emotionally, not being able to drive for many months after a seizure can be tough on a family and it can difficult to navigate a career. The medications have side effects that can impact our lives in many ways, and for me, it meant that my desire to serve in the military, police, fire or as a paramedic were not possible.

However, there’s also much to living with epilepsy that can be a gift. For example, I know what it’s like to feel like I’m on the edge of death, and I’m literally lucky to be alive do to some close calls over the years. I wake up every morning grateful for another opportunity to see the world, love my family and friends, and to try my best to make a difference in the world.

After my dark days, I finally realized that I would need to make a drastic change if I were to live a decent life, so I decided cold turkey to quit all the things that did not support me and I replaced them with habits which would support my physical, mental and emotional well-being. Instead of looking at epilepsy as a burden or DISEASE, I learned to understand that I would need to adjust my lifestyle so I could shift the dis-ease in my body, mind and spirit.

21 years after having my first seizure I am still learning how to live life to the fullest. I’ve competed in the Age Group World Triathlon Championships in 2006, I’ve done a half ironman, plenty of Spartan races and a few ultra marathons. There’s so much more to this story, but I wanted to share the bits and pieces in the hopes that my story will help someone else who is struggling. One thing I learned over the years is that everything happens for an OPPORTUNITY, and it’s up to us to keep our hearts open for that opportunity to present itself.

There are days when the weight of living with epilepsy brings me to my knees, however there are many more days when I am proud to have served my country, I’m proud of my brothers and sisters who continue to serve, and I’m most proud of the person I’ve become over the last 21 years. I’m fuelled to keep moving forward and I consciously choose to be a positive ambassador for those who live with epilepsy. I am also motivated by my fellow soldiers who are still struggling or those who made the ultimate sacrifice to protect our freedom.  

Living with epilepsy has taught me empathy and compassion at a higher level and although I was afraid to bring children into the world because of my own insecurities, I am more than grateful that I chose to overcome my fears. My daughters are my life and I can see that because of my story, they too have an elevated level of empathy and compassion because of what they have been exposed over the last 9 years. My wife is my rock, and without her I don’t know if I would be on this earth to write this story.

In closing, I hope that by sharing my story, I can at least motivate one person to take a look at their life and see the opportunities available to them. 

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P.S. The photo I am sharing with you was a major day for me. As I mentioned earlier, I never got the chance to go to jump school and for over 20 years I lived in the shadow of missing that opportunity. I also lived with the fear of what could go wrong if I had a seizure while jumping. I could no longer allow this burden to hold me back so last year I had my first jump! Even writing this now I am emotional because of the impact it had on my life. My wife and kids were with me that day, and I not only accomplished a goal and overcame a major fear, I demonstrated what can be accomplished with the Never Quit Mindset and the support of a community of people who understand your story.

Karl MacPhee
Edmonton, AB

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