My Silent Marathon

TORONTO September 19th. Digital Champion Stephanie McAulay Stephanie started her running career in 2009 and it quickly became a must-have in her day. It pushed her to believe in herself and understand what she is capable of.  Every day, Stephanie is a person with Epilepsy, and this year it has had a more significant impact on her life — so she will be running the Scotiabank Marathon with a team from Epilepsy Halton, Peel, and Hamilton to raise money and awareness for crucial support programs and services to ensure people with epilepsy can live the best life possible. Connect with Stephanie on Twitter @StephMcAulay and on her blog.

My Silent Marathon. By Stephanie McAulay.

My marathon started in 2003, the year I was diagnosed with Juvenile Myoclonic Epilepsy (JME).

At the time I didn’t know I was starting a marathon, but when I look back over the last 10 years, that is the only way I can explain my life with epilepsy.

This year I am running the STWM full marathon as part of the Charity Challenge with Epilepsy Halton Peel Hamilton.

steph runningTo me, this race will symbolize all the hard work that I have put into what I am calling my silent marathon.

For me, living with Epilepsy is living with the constant fear that at any moment, I will no longer have control of my body.

The most incredible (and horrible) part of having a seizure is watching my arm move while I process the thoughts racing through my mind, but not being able to create any action to stop what is happening or call for help.

At the start of each seizure, I feel my right arm start to shake. This is the most terrifying feeling in the world because I know that I will soon no longer be able to speak and within moments I will lose consciousness.

I wake up with amnesia and then someone explains what happened and I begin to recount a few of the moments before I blacked out.

It is always awkward, scary, embarrassing and exhausting, so like with everything else in my life, I use my witty humour to make a dark situation brighter.

I am running with EHPH at STWM because I want to change the way society views people with Epilepsy. I want the world to realize that people living with Epilepsy are still PEOPLE!

I’m still me – shaking or not.

This is how living with Epilepsy is like running a marathon:

Seizure free days and successfully managing my Epilepsy are like runs where I’ve maintained an awesome pace and feel like a ROCK STAR!

Bad days, losing my license, and having to go on medication are like runs where I want to pack it in, but know I have enough strength to make it.

Adjusting to a new lifestyle to control my Epilepsy is like properly fueling for a run.

Delayed workouts due to lack of sleep are like the moments when I have to rethink my pace after going out too hard.

Awkward moments waking up in a room full of strangers after having a seizure are like every race photo ever taken.

High Five

Epilepsy Halton Peel Hamilton is like my water station, my cheer station. They are there whenver I need them with words of encouragement and the resources to get through any situation.

Volunteering to support a stronger provincial strategy to make life easier for people living with Epilepsy gives me the same feeling as crossing the finish line.

 In the end, everyone is running their own silent marathon. Epilepsy just happens to be mine. I will never give up my strongest run so don’t give up on yours!

What challenges have you conquered in getting to the start line of your marathon this year? Let us know in the comments below. 

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4 Responses to My Silent Marathon

  1. Myron says:

    You’re awesome, Steph, thanks for that post.

  2. Bill Bale says:

    Very Encouraging Steph.. well done.. My Challenge this year was to train to make it to the start line.. I am now 11 months post knee Replacement surgury.
    I first started to run, in 2008 determined to lose weight. I was able to loose forty pounds in 3 months to get to my goal weight, & during that time gained a love for running.
    I trained & ran my first marathon in Vancouver in 2011, it was great.. my next focus was to compete in Toronto
    my homeland (I live in Alberta), so i began to train & fell short because of ongoing knee problems.
    Yes this would be my 3RD surgery since i was 16 years old to this same knee (latereral compartment)
    i had partial knee replacement surgery in Oct 2012 & was told not to run anymore..this was crushing for me as i enjoy running a great deal. so i opted to train for my Goal of getting to Toronto.. Started to train 3months post surgery for the 2013 Toronto Marathon.
    i am now only a month away from making it to the start line in Toronto, with a long run this past Sunday of 33k
    & a half marathon i competed in two months ago.. this past ten months have been challenging
    for me having many ups & downs.. but feel great to be coming to Toronto..

  3. Stephanie says:

    Hi Bill,

    Thank you for your reply! Your story is inspiring. I hope you are very proud of yourself for all of the hard work you have put in! I always encourage people to take the time to notice their accomplishments.

    So happy to have you running with us at Scotiabank and thank you for sharing your story.

    Happy training,

    Stephanie

  4. Emma Rooney says:

    I get it! Your post helps me to stay focused and keep perspective as we head into the final three weeks before the race. Your words are honest, encouraging and inspiring. I will also be running in the full marathon on October 20th (my first) with a rare disease called Gaucher (my silent marathon) & I think you are right on, we all have one (regardless of our health status).

    All the best with the remaining journey to the start-line…

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