Attending the World’s Largest Electonic Music Festival with Narcolepsy

by julie on April 8, 2013

My boyfriend, Alex recently surprised me with a trip to Ultra Music Festival in Miami, FL – the world’s largest electronic concert. As a music lover, I was thrilled. As a person with narcolepsy, I was nervous. 

Over 300,000 people attend this three day dance party with seven stages and over 150 performers including world-famous Tiesto, Calvin Harris, Deadmau5, Swedish House Mafia and Avicii (to name a few). 

This trip was the most generous gift I’ve ever received. I LOVE live concerts but three days of concerts intimidated me. 

How would I sustain high energy levels without napping for three days? Would the crowds, bright lights and costumes induce my cataplexy? 

I knew Alex would be accommodating, but I didn’t want to damper his fun either (self-guilt, always lurking in the shadows). 

Heading into Ultra – I held Alex’s hand tightly, with unanswered questions swirling in my head and excitement bubbling in my body. I took a leap of faith – hoping somehow it would all work out.

On the second day, Saturday, we prepared to leave the hotel in the morning. My legs were weary and feet blistered from Friday night’s dancing. I packed extra daytime stimulants and effexor (in case of cataplexy) into a small baggy.

One of our favorite bands, Icona Pop played at 12:45 p.m. – I jumped and sang along, “I DON’T CARE, I LOVE IT!”  Afterward, we walked around the expansive festival grounds.

 Around 2 p.m. my head fogged with sleepiness, when we came upon this pathway to a secluded waterfront area with three random hammocks overlooking crystal blue ocean water. We were still within the festival gates, but far from the loud stages and busy vendors.  Approaching the hammocks, a girl got up and left one. I grabbed it.

Alex sat nearby eating lunch while I laid back and put my feet up, soaking in the sunshine and listening to the palms sway in the breeze.  To my left  was the sky blue ocean. To my right, the crazy fun concert.  And here I lay peacefully in the middle.  

As my consciousness faded to sleep, I couldn’t help but smile. I’d taken my chances attending this festival with narcolepsy, yet when I needed it most, a hammock appeared out of no where, to support my weary body for a few moments of much-needed rest.

I thought of the zen saying “Leap and the net will appear.” In this case, a hammock appeared!

On Sunday evening, the sun set into a pink sky during Tiesto’s set.  I looked around with wide-eyed wonder. I never imagined that I, Julie Flygare, would attend something like this. My body was tired but my spirit so full of life.

Toward the end of Tiesto’s set, Alex leaned over and asked, “Wanna leave soon? I’m exhausted.” I smiled and nodded yes.  We didn’t need to attend every second of the festival to still have the best time ever. Thank you Alex for this incredible gift.

 

Other risks I’ve taken despite narcolepsy:
Flygirl Takes On Flying Trapeze Despite Cataplexy
Crow Pose: To Rish Falling On Your Nose
Taking Risks & Discovering Nia
The View from Dreamworld
 

 

{ 3 comments… read them below or add one }

Alex Withrow April 8, 2013 at 8:44 pm

Thanks for this post, sweetie. You really did love that hammock.

Best trip ever.

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julie April 8, 2013 at 9:02 pm

Loved the hammock. Loved the festival. Loved Miami. Spring break forever!

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Kim October 9, 2014 at 1:47 am

Thanks for sharing this story! I always get so nervous if it’s an “extended plan/event” because all I want to know is where I’ll be sleeping and will it be possible to have that option at any time?! It makes the excitement of an event not so exciting. But usually, as long as I have someone with me who understands my needs, I can relax and enjoy. Those hammocks were like a blessing! Exactly what you needed, Awesome!

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