Ten years ago today, I came out as a person with narcolepsy. On November 10, 2009, I started this REM Runner blog, disclosing on the internet for the first time that: “Hi! I’m Julie Flygare, a person living with narcolepsy with cataplexy.” 

From my original About Me: 

“Narcolepsy has changed my life for better and worse. I am proud to be a person with narcolepsy, yet I hope to build a brighter future for this serious chronic illness… On this blog, I will share some of my experiences as a person with narcolepsy, and as a runner, yogi, and photographer. In doing so, I hope to shed some light on narcolepsy, a little known and often misunderstood condition.”

Feels like yesterday? Nope.

I wish I could say “it feels like yesterday,” but honestly, it feels like a lifetime ago. My drive and mission remain the same, but this past decade has been a tremendous period of growth for me, the lowest of lows and highest of highs. Some of the lows I’ve shared here, like losing my dad and the nutty rollercoaster of publishing my book, others I’ve kept private.

At the same time, I ran three marathons, published Wide Awake and Dreaming: A Memoir of Narcolepsy, created the Narcolepsy: Not Alone campaign, founded Project Sleep, moved across the country, co-founded the Jack & Julie Narcolepsy Scholarship, worked full-time in the cancer non-profit space, fell in-love with speaking, and eventually took on my dream job of running Project Sleep. 

My blog is OLDER than Instagram.

When I started this blog, it was an important platform for me to share candid stories about living with type 1 narcolepsy with cataplexy. At the time, blogs were fairly new and Instagram didn’t exist (IG launched the following year, on Oct. 6, 2010).

Today, I don’t publish here as much as I’d like. I have dozens of half-written posts and ideas listed in notebooks. When I prioritize my time carefully, blogging often gets cut. At some point, I started to over-think each post. Meanwhile, Instagram snuck into my life, and became the place where I quickly published candid stories and thoughts and seemingly reached my community easily that way. 

Likewise, this blog felt more about me, where my passion is now in helping others share their story effectively through Rising Voices of Narcolepsy and Project Sleep’s other advocacy and awareness programs. 

What hasn’t changed? Your Love and Support!

While preparing to write this post, I searched my old emails and was reminded that I didn’t come up with title “REM Runner.” I’d emailed a few close friends these ideas: “The Dream Run” and “The Dream Jogger.” My best friend, Julie suggested “REM Runner.” THANK YOU, JULES!!!

 

 

To this day, Julie has been a passionate and dedicated supporter. From titling this blog to now serving as Chair of Project Sleep’s Board of Directors…. From helping me through my diagnosis process to sharing with NPR why misperceptions of narcolepsy really “piss her off“… From making “Narcolepsy: Not Alone” scarfs for Watson (Dr. Emmanuel Mignot’s dog with narcolepsy) to reassuring me I wouldn’t become homeless when I quit my job to run PS full-time… 

Julie’s support is one example of the kindness and love that has surrounded me every step of the way. It’s hard to believe, but there are people who’ve followed this blog from its start and have read all 634 blog posts. Wow!

What lies ahead?

Who knows. When I started this blog, I intended to educate my friends and family about narcolepsy. I had NO idea that this would be the springboard for my book and for building a community, a movement and eventually a non-profit. 

If I’ve learned anything from these past 10 years, it is to dream big but start small and keep taking small steps forward. I’ve learned that there are no magical elves out there making the world the way it “should be” – but that each of us possesses incredible power to make a positive impact when we align our actions with our passion.

Persistence is key to unlocking that power. I’ve learned that you have to be hungry for change, because making change means doing things differently and you may disrupt those who are complacent with the status quo. You’ll face rejection, indifference, and trolls (these are real, while the magical good elves are not).

Maybe this post is getting preachy and weird… I think what I mean to say is: I don’t know where the next ten years will take me, but  I know the past decade’s heart-full journey will serve me well for whatever lies ahead.

Thank you & Giveaway!!

Thank you for joining me on this journey. I am so grateful to each person who has read this blog and supported this cause in many various ways – from leaving a kind comment to supporting Project Sleep’s programming to build a brighter future. 

To celebrate 10 years of blogging, I’m giving away 10 copies of my memoir.

Giveaway Rules:

1. You must follow @REMRunner and @Project_Sleep on Instagram.
2. You must subscribe to this REM Runner blog.
3. Comment on this IG post sharing what my efforts or my book have meant to you and tag a friend.

Deadline for entering the giveaway is Thursday, Nov. 14 at midnight. Good luck!

Thanks for this amazing decade, my friends. Here’s to another!