Jumping Into a New Chapter of My Journey

Hi friends! I’m so beyond excited to share that as of February 12, 2018, I made a huge career change and took on a new role as President & Chief Executive Officer (CEO) of Project Sleep! Read the full announcement here.

Wait, what’s the difference?  

Some people have said they thought I was already serving in this role. Good question!  I was previously serving as the President of Project Sleep’s Board of Directors, managing our programming and growing our organization on nights and weekends. Meanwhile, I worked full-time at the Pancreatic Cancer Action Network for the past two years (and commuted 2-3 hours daily), and at City of Hope for the two years prior.

Now, I work for Project Sleep. Full stop.

These past four years, I learned a LOT and I wouldn’t trade these opportunities and experiences for anything (well, besides the 10-15 hours a week spent in LA traffic cause, UNLIKE narcolepsy, LA traffic is JUST like the movies! 😉 ). I had the most incredible co-workers and supervisors who I hope to call friends for a very long time.

But these four years have also been draining. No matter how much I narrowed my focus, built a strong “no” muscle, and prioritized my time carefully, I felt two steps behind in everything. I used most of my vacation days for speaking engagements and important meetings, leaving few for things like relaxation or spending time with my family or my best friends (and their babies I haven’t met!). Increasingly, leading multiple lives wore on me – mind, body and soul.

Last June, a few things shifted.

First, I attended the international SLEEP meeting in Boston and had some really wonderful conversations with leaders who I look up to a lot. This got me thinking and my desire to align my time and energy with my life’s work grew even fiercer.

Soon after returning to Los Angeles after the SLEEP meeting, I went to see Wonder Woman in the theater. Call me way cheesy, but I was inspired.

When I returned home from seeing Wonder Woman around 10:00 p.m., my whole being was buzzing with energy and I couldn’t just go to sleep. So I changed into my bathing suit and tip-toed out to the pool in the center of my “Melrose Place”-style apartment complex. I stood at the edge of the pool, watching the reflections of the building’s florescent lights move along the rippled calm surface. The night air was cool and quiet. Technically the pool closed at 10:00 p.m. so the “rule follower” in me looked up toward our building manager’s door with fear…  And then, I channeled my inner-Wonder Woman and jumped.

That was the moment I decided to just try.

That’s all. To just try to explore the possibility of working for Project Sleep; to just try to put together a plan for reaching this goal. I’ve heard that you shouldn’t say you’re “trying to do something” because it shows weakness or lack of commitment, and instead you should skip the trying and say you’re “doing something”. But for me, “trying” was an important stepping stone toward “doing.”

Of course, I’m extremely grateful to Project Sleep’s Board of Directors for believing in a vision for our organization’s growth and my potential to help us reach our goals and increase our impact. None of this would be possible without them – and ultimately this was their decision, not mine.

Now, looking back seven months later, all gussied up with a power pose glamour shot and fancy job title, it might appear as if it was seamless and easy. Part of me wants you to think it was, cause wouldn’t that be grand?

But part of me wants you to know the truth:

This was a major learning and growing process for me. Last summer, I shared a somewhat cryptic but honest message on Instagram:

“I’ve made a few pinnacle decisions – to write a book, to start a non-profit, and I recently made a third big choice. It is a really good one and I’m super excited. But it’s also really scary and requires that I step way the f*ck out of my comfort zone.

This past month, I’ve felt euphoric and unstoppable and I’ve cried and felt like a hoax. I don’t know if I will achieve what I’m attempting, but I know this…. If you put yourself out on a ledge, your fears and sad stories might be the first to join you, beckoning you to return to safety, because you’re not good enough, smart enough, pretty enough, strong enough… ‘who are you to think you can achieve your dreams?!’

But if you can hold your ground and continue forward, one scary freaking step at a time, you may start hearing new voices, that believe in you and your direction. And just maybe the world will rise to carry you to where you want to go.

Right now, I’m on the ledge, and although I’ve been here before, it’s just as lonely and scary this time around. So here’s to keeping my gaze focused and my whole being in forward motion.”

Taming the Sad Stories and Fears

First, I had to make room in my heart and mind for myself. That may sound strange, but reaching for something YOU really want will require that you actually love and respect yourself enough to prioritize your goal and go for it. (I’m not sure I’m explaining this well, but can’t think of another way to explain this.)

Yet, no matter how much self-love and self-respect I fostered, my “sad stories” of not being smart enough or organized enough still joined me at times, usually when I was feeling down or over-tired. To counter these voices, I used techniques I learned from two amazing books called “The Confidence Gap” and “The Happiness Trap“, both by Russ Harris (and there’s a wonderful Australian accent audio-version of “The Confidence Gap” on Audible).

Using Harris’ books and the ACT techniques: I learned to recognize my sad stories as soon as they began yacking. I learned to greet them by saying, “Hello sad story, thank you for joining me today.” It sounds silly, but it helped to separate this natural but negative frame of thinking from my identity and stopped me from feeding into it. The first time this actually worked, I literally started laughed so hard that I couldn’t take my sad story very seriously, even though part of me, the sad part, wanted to! This has been a life changer for me.

When the fears of “what if X or Y” start circulating, I set the bar really low and tried to remind myself that this transition won’t kill me. For example, the moment before I gave my two weeks notice at work, I sat at my cubicle hunched over with nausea, my heart racing and mind spinning with fears.

Finally, I asked myself: “If I take this step, will I become homeless or die?” I decided I’d probably live, but homeless? Maybe… So I texted my best friend to ask her not to let me become homeless. No really, I did. She reassured me I’d be okay.  “Okay then Julie, proceed.”

Thank you for your support!

So that’s a bit of how I reached where I am today, sitting on cloud nine. However, while I wanted to showcase some of the mental coping skills I learned along the way,  in case they resonate with you, I feel like this post became all about me, as if I did all this alone in my silly little head. That’s so not the case. My silly little head was just part of the story.

As they say, it’s team work that makes the dream work. I’m extremely grateful for Project Sleep’s dream team of donors, supporters and volunteers. It’s the inspiring people I get to work with everyday that make this such a meaningful and beautiful experience.

In addition, thank you to mentors like Susannah and Dennis who generously gave their time to me over this past year to help me advance Project Sleep. On a call with Dennis last fall, he said, “You have permission to do this.” While he was probably referring to the project we were brainstorming, it hit me as exactly what I needed to hear on a higher level. So for anyone who needs to hear the same, I’m happy to give you an official permission slip too!

Lastly, thank you readers for following along, some of you for 8.5 years now, since November 2009 when I hit “publish” on my first post, announcing to the world: “Hi, I’m Julie Flygare and I’m a woman living with narcolepsy.”

What a journey it’s been… I hope to continue making you and this community proud. Also, I plan on blogging a lot more this year! You may even get sick of me. Imagine that!

 

4 Comments

  1. Geraldine on February 20, 2018 at 6:16 am

    Way to go Julie! Congratulations and Thank you for being so inspiring ?
    You and me share same diagnosis and same diagnosis date.

  2. Sydney on February 20, 2018 at 6:07 pm

    Thank you Julie for all you do! And especially for being so candid and allowing us to follow along with your journeys. Many people do not share their struggles, only their triumphs. When you share your struggles and your frame of mind with us, it helps us to see that our dreams and goals can materialize step by step, making them seem more doable and way less daunting! I haven’t had narcolepsy for very long but I have followed you the almost the whole way. You inspire me to dream big, when narcolepsy tries to tell me I can’t. Best wishes in your exciting new endeavor. I can’t imagine anyone better suited for the job!

  3. Danny van Leeuwen on February 20, 2018 at 7:36 pm

    I support you 100%. Your sad stories are the fires that drive you. I like that you’re making them your friend because they are.

  4. Danielle on May 11, 2018 at 8:17 pm

    Ok so what progress is being made? What resources have you brought about for Narcolepsy? Where can we sign up for events that’s aren’t promoting another drug or well a person? What is your advocacy actually doing for us & the illness itself? Its in the public and media briefly year after year and your doing all of these great things state to state….but what tangibles are there? What has changed? Have we gained any footing in getting anything changed, improved or even thought about just getting narcolepsy recognized as an actual disability ??? No offense but what are YOU doing for us? Have you petitioned for any changes in SS? Is that even a road you’ve looked down? 2013-2018 you’ve been at the forefront… of what??? I still cant find a support group or any help medically financially or scientifically ….. progress shouldn’t be that slow with how many of us there are standing behind you.

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