10 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: “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 remains 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 even 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 so 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.
What hasn’t changed… Your Love and Support!
Preparing for this post, I searched 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 Glazer Scher responded, suggesting “REM Runner.”
To this day, Julie has been a passionate and dedicated supporter. From titling this blog 10 years ago to currently serving as Chair of Project Sleep’s Board of Directors. From making adorable “Narcolepsy: Not Alone” doggie scarfs 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 read the majority of its 633 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’ve learned so much from the past decade that I know these learnings will serve me well for whatever comes next.
Thank you for joining me on this journey. I am so grateful to each person who has taken an interest in this blog and supported this cause in any way you could – from leaving a kind comment to supporting Project Sleep.
Thanks for this amazing decade, my friends. Here’s to another!
from Julie Flygare http://julieflygare.com/celebrating-10-years-of-the-rem-runner-blog/