Recently, I traveled to Atlanta to speak at the Hypersomnia Conference 2015. The conference featured a great variety of support groups and fantastic presentations by medical leaders, educational experts, patient advocates and a disabilities attorney. Uniquely, the conference also included hypersomnia, narcolepsy and KLS speakers and attendees, so we could share and learn from each other.
I was honored to present two sessions:
- Communicating about Sleepiness: Everyone has felt sleepy at times, but the sleepiness of hypersomnia is different. It can be challenging to convey the serious and disruptive nature of this very real but invisible symptom to others. In this session, Julie will provide tips and novel approaches to discussing sleepiness with loved ones and peers to better foster understanding and support.
- When Dreams Leave the Bedroom: Julie’s inspiring journey with narcolepsy from battling invisible sleepiness and collapsing to the ground paralyzed to running the Boston Marathon and becoming a leading narcolepsy and sleep advocate. The presentation touches upon the isolation of living with invisible symptoms and the importance of letting go of self-guilt. Julie details how one woman’s sleep disorder served as both a curse and a catalyst toward living a life of greater meaning and fulfillment than she ever imagined.
The hypersomnia community rocks:
I’m a big fan of Dr. David Rye and the Hypersomnia Foundation, so a year ago, when Jenn and Cat asked me to speak at the conference, I said “Yes!” right away. It is my personal belief that a greater understanding of the mechanisms underlying hypersomnia will transform sleep science.
What I didn’t know was that this conference would bring together a remarkable and gracious group of people. First of all, the conference was extremely well-organized. The Hypersomnia Foundation board of directors and volunteers were all so very thoughtful and kind.
As a small example, I casually asked one of the younger volunteers to “watch my table” while I went to lunch, not thinking much of it. Turns out, someone accidentally picked up one of my books thinking it was free and walked away. (To this person’s credit, I should have had a sign listing the price and shouldn’t leave the books out like that.) Well, the young volunteer chased after the person and recovered the book, which I imagine was a slightly awkward conversation. I was super impressed by this level of care.
The conference attendees were equally awesome, I’ve never heard so many people expressing their gratitude so openly at a conference. Everyone was thanking everyone – it was a bit of a thank you love-fest! I joke but seriously, this was really striking and awesome, as someone who has attended my fair share of conferences.
Gratitude is a beautiful thing – and it was refreshing to be part of this group of people who chose to be positively-spirited and gracious, despite the equally palpable amount of adversity, hardship and frustrations that had brought us all here together, in the face of hypersomnia, narcolepsy and KLS.
It was fantastic to see old friends and meet new friends. I am inspired daily by the individuals who approached me to share a bit of their story with me. So many superheroes… It was especially great to catch up with the Preston family, who have supported my efforts so whole-heartedly over the past couple years.
Smiles and Fun, but Tears Too:
I received my first-ever standing ovation after my second presentation sharing my inspiring narcolepsy journey. I also set a personal record – crying THREE times during this speech. Oh, and I cried again when everyone stood up and clapped, so FOUR times.
If you’ve seen me speak, you’ve likely seen me cry. I tend to break down at least once giving my inspiring narcolepsy journey presentation. I used to feel awkward about this, especially the resulting LONG moments of silence as I re-group myself. But I don’t care anymore. I’ve found that it connects me more with my audience. It’s just me being me.
One attendee approached me afterward to reflect, saying “People speak about really serious and difficult situations without any emotion, they seem so removed that it doesn’t feel real. Your emotion is raw and honest, you are showing us that this is the reality and it IS difficult and that’s okay too.”
This was nice to hear. Really, I just love speaking, tears and all. It’s my favorite thing in the world to do and I’m so thankful that anyone will listen.
This was a very meaningful conference experience that I will cherish forever. Thank you to the Hypersomnia Foundation for bringing me to Atlanta to be a part of this. I hope to see you all again next year!
Upcoming speaking engagements:
- Medicine X Conference (Sept. 26, 2015)
- UCLA Family Home Visits Program (TBD)
- Narcolepsy Ireland (March 2016)