Visiting Ireland to Speak at Ireland’s Narcolepsy Awareness Day 2016

by julie on March 29, 2016

IMG_6399This National Sleep Awareness Week, I had the honor of traveling to Ireland to be the keynote speaker at Ireland’s 4th Annual Suddenly Sleepy Saturday Narcolepsy Event on March 12, 2016.  This experience, and my entire trip to Ireland, was totally unforgettable and surreal.

After the long journey from Los Angeles to Ireland, I arrive in Dublin very early on Wednesday morning. The Blackwell family kindly welcomed me into their home for the days leading up to the conference. I must admit, meeting Ben and Gadget was extra special for me, because I’d always loved their photo in the NARCOLEPSY: NOT ALONE campaign.

ireland ben sam jane julie narcolepsy not aloneOn Wednesday, I rested most of the day. On Thursday, we visited the Trim Castle (where scenes from Braveheart were filmed).

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On Friday, we visited Dublin City Center and Trinity College.

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On Friday evening, I checked in at the hotel and met Elaine Butler Armstrong – who I’ve been in touch with for over 5 years now. This was a magical moment, as Elaine’s radiant smile lit up the entire room. Her aura of calmness and positive energy were so contagious. Meeting in person, I felt even more grateful for Elaine’s important role in our international narcolepsy community. Elaine has the professionalism and human touch of a true leader.

Screen shot 2016-03-28 at 6.39.15 PMOn Saturday, I woke up early and crouched over my computer, in a nervous flurry to finalize my presentation slides and notes. Generally, I don’t get nervous to speak anymore, but this audience was so close to my heart. I wanted to bring my “A game”, and leave each attendee with a renewed a sense of pride and hope. This always strikes me as an impossible job, but then I just remind myself, “Just be yourself and tell your story, Julie, even if your voice shakes.”

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At 1:00 p.m., I stepped in front of an eloquent ballroom packed with over 120 people, and I shared my story the only way I know how – with honesty, humor and yes, tears. Afterward, I wasn’t sure if it went well, I am my own worst critic, so I was thankful to hear that attendees had enjoyed it. Phew!

Later in the afternoon, I presented “Communicating about Narcolepsy” – a presentation to help people with narcolepsy and supporters find effective ways to tell their story.

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Throughout the day, I enjoyed signing books and taking photos with new friends. Over the weekend, I met so many amazing people with narcolepsy and supporters from across Ireland and the U.K., who quickly became part of my extended narcolepsy family. It was especially cool to finally meet Alexander, Mairead, the Lawless family, the Plunkett family, Matt, Peter, Sarah, Jenny, Marion, Sharon, Mary and Tom, along with many other new friends!

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After the conference, I had the pleasure of spending a few days with the Matthews family. On Monday, we visited Newgrange (the oldest man-made fully-enclosed structure and older than the pyramids).

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During this trip, there were big exciting moments along with quieter, more serious moments – both of which I valued so much. Especially while staying with the Blackwell and Matthews families, we had some really honest and thought-provoking discussions about everything from practical daily living with narcolepsy to national and international advocacy efforts. We discussed napping, medications, narcolepsy research, school and work accommodations and the unique challenges facing children and families affected by the Pandemrix H1N1 vaccine in Ireland and northern Europe. I learned so much from my fellow advocates and I am humbled and inspired by their tenacity, compassion and passion.

To be honest, returning home to the U.S.A. was strange because I felt so loved and at home in Ireland. I will cherish this experience forever. A GIGANTIC THANK YOU to Narcolepsy Ireland, S.O.U.N.D., Elaine, the Blackwell and Matthews families, and everyone who made this unforgettable dream a reality. Not saying goodbye, just see you later. 

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Special thanks to Elaine and the lovely ladies of Narcolepsy Ireland for my new lovely nap blanket!

 

{ 4 comments… read them below or add one }

karen March 29, 2016 at 5:17 pm

Julie, you never cease to amaze me. What a way to see the world! You spread goodness and cheer along with your message everywhere you go. I remain your devoted fan & follower. Keep up the good work!

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marion March 29, 2016 at 7:17 pm

Julie it was so brilliant to have you here in person. The U Tube clips do not do you justice. Your talk had me in tears & made me smile. Your positivity is contagious. Next time we’ll kidnap Ya & hold you hostage here in the west. :-)
Thanks again
Marion
Namaste xx

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Kathy O'Brien Pinter March 30, 2016 at 1:56 am

Thank you so much for sharing your trip to Ireland and all your other stories. My dad had narcolepsy. And while he passed away more than 30 years ago, he and his challenging disorder are still part of my daily thoughts. I enjoyed your book and appreciate your efforts to help people face narcolepsy with a smile.

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Niamh Laste April 10, 2016 at 5:02 pm

Julie you were so inspiring. Loved hearing your story and how you deal with things as I am only 13 and find it hard sometimes. Having someone like you to speak on behalf of everyone with narcolepsy is amazing. You’ve helped me see that other people struggle like I do but that there are ways to carry on. I loved listening to you.

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