So This is 35…

by julie on September 30, 2018

September was a whirlwind and somewhere in there, I turned 35.

So now it’s been 11 years since I was diagnosed with type 1 narcolepsy with cataplexy and five years since I moved to Los Angeles and founded Project Sleep.

Where the heck did the first half of my 30s go?

A few flashbacks come to mind – mostly┬áparking lots across Los Angeles, where my car doubled as Project Sleep’s “office” (while working full-time in the cancer space and running PS on the side). Those same parking lots also tripled as napping spots to help me through long commutes.

A lot else happened – two marathons, two heart-wrenching breakups with the same guy, two apartments in the same “Melrose Place” that has truly become home, and so many incredible opportunities to raise awareness and share my story around the world. I guess the first half of my 30s was pretty eventful. ­čśë

All this landed me where I am today. This past month was one of the most surreal months of my life – filled with goosebumps, laughter and lifetime highlights that I’m still processing and will cherish forever.

September 2018 Highlights:

  • Sept 4th: Met a dog with narcolepsy, Watson and recorded an informative and fun Facebook Live with Dr. Mignot and Watson in Palo Alto, CA.
  • Sept 6-8th: Participated in the beautiful wedding of one of my best friends to an amazing man and┬ávisited this same friend’s stunning art exhibit that she curated (#badass) in San Francisco, CA.
  • Sept 9-13th: Attended the International Symposium on Narcolepsy in Beverly, MA.
  • Sept 14th: Celebrated turning 35 with family, friends and the most delicious Party Favors cake!
  • Sept 15th: Hosted Project Sleep’s “Innovations in Narcolepsy Awareness” event in Boston, MA.
  • Sept 21 – 24th: Filmed videos to showcase Project Sleep’s Rising Voices of Narcolepsy┬áprogram with five amazing speakers in San Jose, CA.

**Note: Something else really exciting happened too, which I’ll announce TOMORROW – on Monday, October 1st at 12noon ET via Instagram Live!! Be sure to tune in. ­čśë **

Finding My Core Confidence

In my 30s, I think I’ve grown into myself. At age 35, I feel an incredible sense of calm confidence at my core. I believe in what I’m doing and believe I have what it takes to do some good things (NOT “all the things,” but some good things because spoons are limited). For example – public speaking didn’t come natural to me at first. “Fake it til you make it,” was my motto for quite some time. Yet, something has shifted.

I noticed this shift recently at the International Symposium on Narcolepsy. As I rose from my seat to cross the fancy dining room in front of 100+ world-leading researchers, to give my 5-minute talk on Project Sleep, I walked with ease. Sure, I was afraid I might trip and nervous I wouldn’t articulate myself perfectly (no, I didn’t trip but yes, I didn’t say everything perfectly). Yet, I was entirely sure of myself and my place there on a higher level – as a speaker and community leader – even in this somewhat intimidating setting. It was an amazing feeling.

Winging It

That being said, I am also struck by the fact that at 35, I really don’t know what I am doing in many layers of my life.┬á I love learning and hopefully, I’m gaining skills that will help me “succeed” in some ways.┬áBut I’m not entirely sure of how things will work out and in many ways, personally and professionally, I’m just sort of winging it best I can. Over this past year in particular, I’ve had to get used to snuggling with uncertainty. I suppose this uncertainty comes with taking big risks.

Sharing this sentiment on Instagram this morning, a friend made a beautiful comment:

“Being willing to wing it is where the magic happens.”
-Miranda

So, in closing, I wonder – am I allowed to be both calmly confident and totally uncertain at the same time? I hope so, because that is where I am today.┬á As always, thank you for letting me share this journey with you. It’s so surreal and hard to believe I’m living it. Can’t wait to see where the next five years lead!

Amazing Headband: Lysande
Amazing T-shirt: Target
Amazing Photography: Michelle Zagardo

{ 1 comment… read it below or add one }

Sarah October 22, 2018 at 8:40 pm

Julie,

Thanks for sharing your journey. I have read your book and it was wonderful. I had my sleep study last Thursday and went into REM sleep 4 out 4 naps. I have been telling doctors for years how tired I am. Scared I am, but hopeful at the same time.

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