An Unforgettable Trip to Sweden to Speak about Narcolepsy

by julie on May 24, 2018

I recently returned from Sweden, where I was honored to be the keynote speaker at a narcolepsy event hosted by Narkolepsi Föreningen, an association for people affected by narcolepsy due to the Pandemrix vaccine against swine flu in 2009-2010 and their relatives.  The retreat took place on May 11-13, 2018, but I traveled to Sweden a week early to explore a bit of my Swedish heritage and adjust my clock before the conference.

Exploring Stockholm

Some of my favorite touristy activities included visiting the Vasa Museum, Millesgarden, Fotografiska, Old Town and of course, the ABBA Museum!  Very special video below, lol.  😆

I lucked out with the most beautiful weather – it was 70-80 degrees and sunny my entire trip. So, I really enjoyed wandered Stockholm, ducking into cute shops, snapping photos and taste-testing all the cardamom-laced pastries, oat milk lattes and gummy candy.

Soccer is No Joke

Attending my first soccer game was a huge highlight, with Djurgärden (the team we were cheering for) defeating Malmö 3-0 to win the Sweden Cup! The “fan spirit” far exceeding my expectations – with both enthusiastic cheer AND angry rioting (Malmö fans). Scroll through this Instagram post for videos of the mayhem.

Learning How to Pronounce My Last Name

While in Sweden, I also learned how to pronounce “Flygare” — my own last name (at the age of 34)! I’ve known for a while that our U.S. pronunciation wasn’t the original Swedish version, but it took me a week of practice to really master the correct pronunciation. Learn how to say “Flygare” (scroll to watch video)!

Speaking at the Narcolepsy Retreat

After an awesome week in Stockholm, I was excited to travel 30 minutes outside the city for the narcolepsy event. Each spring, Narkolepsi Föreningen hosts this retreat for its membership to come together at a beautiful retreat center. The organization also hosts a larger conference for both its members and their families in the fall.

Sixty-eight people with narcolepsy signed up to attend the retreat. While Narkolepsi Föreningen’s membership definitely varies, a majority developed narcolepsy at a young age. So, in a sense, these individuals have grown up with narcolepsy and with each other through their organization’s wonderful community. I hoped my presentation would resonate with them and add value. Also, I hoped that they would understand my English okay, although everyone’s English seemed amazing, I know I can talk too fast.

Ultimately, my presentation was an extremely emotional one, more than usual. As I looked into the eyes of the young adults with narcolepsy – they nodded, laughed and I saw tears well in some of their eyes. I knew they understood. They knew this story all too well — in their hearts, in their bodies, in their past, and in their present. Our circumstances may vary greatly, our native languages different, but many of the feelings and challenges we face are very similar. The sense of togetherness was very raw, real and special.

After my presentation, we took a group Narcolepsy: Not Alone photo!  Over the weekend, I got to speak one-on-one and in small groups with the attendees. I cherish these quieter moments of connection and reflection. Also, I was blown away by the maturity and grace of these individuals. I’ll never forget this time we spent together.

A Gigantic Thank You

First and foremost, a HUGE thank you to the Olsson family for their amazing generosity. The Olsson family welcomed me into their home for this trip and made this speaking engagement possible. I’ve been in contact with this extraordinary family for five years now and I’m forever grateful for their kindness, support and their willingness to eat lots of vegetarian food and gummy candy with me!

Special thanks to Narkolepsi Föreningen‘s incredible leadership and membership who welcomed me into their community so warmly. This organization is a powerhouse – providing support services to their membership while also conducting critical advocacy and awareness work. Check out their beautiful new website featuring real faces of people with narcolepsy.

Returning home from Sweden, I’m re-energized and inspired to continue working hard. There’s a lot to accomplish, but our incredible international narcolepsy community gives me hope that a brighter future is within reach.

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