24 hours til my Mountain Marathon with Narcolepsy… No Clue How This Story Ends

by julie on March 3, 2017

IMG_3329Four months ago, I had the “crazy idea” of signing up for the Griffith Park Trail Marathon. When I signed up, I actually thought I had five months to prepare, when I only had four… What can I say, math isn’t my strong suit. Maybe I should’ve quit then, but if you know me, I’m pretty determined/stubborn.

Since then, my mountain preparations has reminded me daily that yes, it was indeed a crazy idea. As the training progressed, people have said things like: “You must feel great!” and “Doesn’t you feel so strong?”

No, not really. I mostly feel sore, nauseated and depleted.

To be honest, living with narcolepsy, working full-time with a long commute, and running Project Sleep, it’s been tough to add this to my life. My relationships have suffered, my work has suffered, my blog has been ignored, my patience is non-existent… Maybe it’s been too much.

IMG_2507But for what it is worth – I have prioritized this marathon. I’ve followed my training schedule diligently, except for a few times when my cataplexy or excessive sleepiness was an issue. Three weeks ago, I completed my hardest training run – 20 miles climbing almost 3,000 feet. I felt strong and ready!

And then, last weekend, I learned that the race’s elevation gain will be over 5,600 feet instead of over 3,600 feet. My confidence disappeared.

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So why am I doing this exactly?

Because I do NOT know how this story will end. There are fears swirling in my head – of injury, pain, and muscle cramps. Mountain lions and rattlesnakes chase me in my sleep. I don’t know if I will run, walk, hobble across the finish line or not at all.

I am actually genuinely scared.

Which is kind of exciting, isn’t it? This uncertainty sort of makes me feel more alive, to have given so much time and energy to something that I have no way of knowing if it will work out in the end. I don’t have my next blog post written with a happy ending.

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Facing something that actually tests my boundaries and overwhelms me feels like I’m still exploring what it means to be me, Julie Flygare, a woman with narcolepsy, but also a person with many other unique qualities, strengths and weaknesses. It feels like I could be expanding my notions of myself. At the very least, I am exploring uncharted territories to see what’s out there.

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I think sometimes people may have misperceptions of my confidence, energy and enthusiasm. People with narcolepsy have commented “I wish I had your energy” and “Are you sure you have narcolepsy?”

Hmm, pretty sure I have narcolepsy with cataplexy…. and really?! Wishing for the energy of another person with narcolepsy seems odd.

Narcolepsy affects every day of my life and every decision I make – and it is the greatest challenge of my lifetime, actually much harder than training for any marathon. Unfortunately, our culture has this backwards. It’s fascinating to live with one foot in the marathon-running world where my challenge is so revered and the other foot in the narcolepsy/chronic invisible illness world where my challenge is so misunderstood and under-appreciated.

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If you were with me in-person, you’d see how incredibly human, flawed and weak I am.

  • You’d see my hands shaking with nerves before my long runs.
  • You’d see how I get myself out of the house by telling myself “I’ll just go for a walk” cause I often can’t stomach the idea of running on weeknights.
  • You’d see the clunky waddle of my slow walk/run pace.
  • You’d hear me gasp for breath up the mountain.
  • You’d hear me swear… a lot. You’d see me cry and want to give up.
  • You’d see me napping on the floor of my workplace and having cataplexy at night.
  • And you’d see how I prioritize my time carefully and try to maximize my small pockets of energy and enthusiasm best I can.

I guess what I mean to say is that this is really hard and I’m scared. Yet, the only way for me at this point is to continue moving forward, very slowly but only looking one step ahead. I’m trying to appreciate and celebrate the mystery of the unknown that lies between this moment and the next 24 hours.

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I’ll try to keep my Instagram Story updated in real-time as best I can and I look forward to reporting back afterward. In closing, thank you for your support via my marathon fundraising page. We’re close to funding three scholarships – please make a gift today!

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{ 2 comments… read them below or add one }

Rebeca rabin March 4, 2017 at 7:40 am

Sending love and cheeribg you on for running/chasing
after your dreams! With admiration, as ever! I’ll be thinking of you
and looking forward to hearing how the run goes.
Xo
Rebecca

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Myles Clark March 4, 2017 at 9:31 pm

Julie – I’m pulling for you. Just like when you went to Italy, and Ireland, and in every endeavor [even when only aware of it, after the fact]. I am amazed at your determination. Your perseverance. Most of all, I’m grateful for your time & efforts dedicated to raising awareness of Narcolepsy. You’ve made a huge contribution already. And, you keep on, always seeking out, and doing still more.
I’m with you in spirit, as you run. Before people caught on to running, back when it used to be called distance-running, as opposed to marathon, I was a runner. I fell away from it before it had gained its popularity. And, now, mostly due to age, & health changes, walking & hiking serve as the replacement for running.
Be with peace in your run. Remember that clenching other muscles only wastes energy. And mentally ‘clenching’ also only drains you, too. Take care.
You are still respected — whatever the challenge’s result. It is ultimately the endeavor, and your willingness to embark on it. Outcomes are never fore-ordained. You accept them. That’s why we respect you.
Run well! Run free!

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