2018 was a year unlike any other. I invested in a few new suitcases, which helped me get around easier since I don’t think I’ve ever traveled so much in one year. Here are some highlights, challenges, favorite reads, lessons learned and dreams for the new year!
Highlights of 2018:
- Taking the leap to become the first employee of Project Sleep was one of the biggest, boldest changes I’ve made in my life.
- Traveling to Taiwan, Sweden and Australia – wow!
- Attending the International Symposium on Narcolepsy
- Participating in the Suffering the Silence video & photo shoot
- 15 Speaking Engagements – sharing my story of narcolepsy in various settings from high school and college classrooms to hospitals and conferences
- Many of my favorite moments are intertwined Project Sleep’s 2018 Accomplishments
Biggest Challenge of 2018:
Recording the AUDIOBOOK for Wide Awake & Dreaming: A Memoir of Narcolepsy (finally)!! Going into this, I had no idea how much work would be involved in learning how to narrate my own book. I mean, I wrote it, how could reading it be challenging?! I shared funny behind-the-scenes stories about the process in this video.
Favorite Reading of 2018:
- Secret Stairs of Los Angeles by Charles Fleming – I totally fell in love with exploring Los Angeles through this book, I’ve completed 8 of the 42 walks so far!
- The Humor Code by Peter McGraw and Joel Warner – thought-provoking in thinking about how narcolepsy became a “joke” and also in thinking about cataplexy’s connection to humor.
- Stop Raising Awareness Already by Ann Christiano and Annie Neimmand. This article blew my mind, so I subscribed to Stanford Social Innovation Review and now I read each issue cover-to-cover. This magazine is helping to improve my understanding of the non-profit sector and behavior change campaigns.
Favorite Meal of 2018:
Does gummy candy count as a favorite meal?! Probably not… Hmmm… 😛
I fell in love with the Vete-Katten bakery/cafe in Stockholm and spent a few leisurely mornings here – reading a book, sipping oat-milk lattes, and eating cardamom rolls and coconut chia puddings. This is my version of heaven.
Favorite Speaking Engagement of 2018:
Each speaking engagement is SO incredibly special to me, it’s impossible to choose one favorite, but a recent one stands out that I haven’t shared about yet. This fall, I spoke at USC’s School of Journalism about my experience founding a non-profit and our proactive and reactive awareness and public relations efforts. Toward the end of my presentation, I asked the class: “Does anyone know anyone with narcolepsy?”
Two students raised their hands, which surprised me. The first explained that her roommate might have narcolepsy and is currently in the diagnosis process. A second student shared that hearing me speak made her realize that all the things she’d been experiencing could be narcolepsy! It was an intense emotional moment that I’ll never forget. I don’t think this has actually ever happened in any of my presentations before, at least that I’m aware of.
Lessons Learned (or Re-Learned) in 2018:
- YOU have to believe that you deserve what you want in order to get it. I can’t stress enough how big of a mindset change I had to make in 2017 in order to take on the role of President & CEO of Project Sleep in 2018. Before this shift, I had hoped and dreamed of a role like this “someday” and honestly, I’d felt frustrated and bitter when I couldn’t do as much as I wanted for narcolepsy and sleep because of my other full-time job (for a worthy cause of cancer research and awareness, but my passion and life’s work was in narcolepsy and sleep). My bitterness was toxic, but it was also safe and familiar. To take a big chance to pursue my new role, I had to shut out my “sad stories” – something I learned to do thanks to this book. I had to pony up to my dreams and actually find it somewhere in me to believe that I deserved the life that I wanted to have.
- Your time is your greatest resource. Handle with care, Julie! Anything I give my attention to is absolutely precious because my time is so very limited with my very-full full-time job, while living with narcolepsy and cataplexy, and needing downtime away from all this. When I first started full-time for Project Sleep in mid-February, I thought “I’m full-time now, I can do #allthethings!” and quickly said “yes” to a few too many things. Slowly, over the year, I got sliiiightly better at saying “no” to a few things. I will probably be working on practicing this lesson for the rest of my life.
- Your physical space matters. Working from home, I spend a lot of time there. Over the year, I let my space get away from me and my little bungalow started to look more like Project Sleep’s storage closet than a home for a human. Finally, in December, I took a whole weekend to clean and de-clutter. I felt 1000% better afterward!
Dreams for 2019:
- 2019 is going to be a HUGE year for Project Sleep and I can’t wait to get starting managing our programming and unveiling some cool new resources in January! I hope to continue to make you proud and gain momentum in our awareness and advocacy efforts.
- I’d love to complete all 42 of the Secret Stairs of Los Angeles walks!
- Honestly, I have my dream job, I love where I live and I feel grateful every day for the life I am leading. I feel grounded like never before, so I can only hope to keep learning, growing, working hard and laughing lots.
In closing, thank you for your incredible continued support. The community of friends, and supporters who help to advance Project Sleep’s mission is awe-inspiring. Your kindness is not lost on me, you lift me up and YOU are the reason I stand where I am today. <3