A Wicked Awesome Moment

London 2007
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F*CK, I slept through Wicked. In February 2007, I was in London for spring break and splurged on an overpriced “half-price” ticket to see my favorite musical, Wicked. I’d listened to the soundtrack a hundred times, but never seen it. The first act was magical, but as the curtains raised for the second act, my lights went out.

Despite fighting hard against heavy eyelids, sleep won. Waking up in the final scene, my heart raced and my stomach clenched. F*CK. I shuffled out of the theater with lethargic disappointment.

At the time, I blamed jet-lag (even though I’d been in London a week). I blamed jet-lag a lot that week, including falling asleep in Starbucks one afternoon, thankfully with one of my best friends nearby to watch over me. Five months later, I discovered the word, “Narcolepsy” and two months after that, I was diagnosed with a serious case of narcolepsy with cataplexy.

London 2007
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When someone thinks narcolepsy is a joke or sleepiness is no big deal, I often tell them about Wicked. Why? Because everyone loves something – football, movies, etc.  I love musicals. So sleeping through Wicked is my version of sleeping through that big special moment in your life – like attending the Superbowl or Oscars and SLEEPING through it. Sleep is a compulsion for me, not a choice or lack of willpower.

Eight years later, I returned this week to see Wicked again – this time in Hollywood with my boyfriend, Alex (his awesome Christmas present to me). As the curtains parted, I smiled ear-to-ear and leaned forward with wide eyes. The music has been meaningful and inspiring to me personally (cheesy, I know). My face was literally plastered into the biggest awkward gawking smile.

Hollywood 2015
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Ironically, at intermission, Alex mentioned that he was enjoying the show. “You didn’t tell me it was so funny,” he said. Alex is NOT into musicals but a good sport to accompany me, so the fact that he liked it? Well, it was so unexpected and happy in that particular way that those with cataplexy will know where this is going… My head tingled and legs went weak. I stayed seated for a few minutes to let the wooziness pass before trekking to the ladies room and back. I wasn’t fully stable, but I made it without falling.

As the curtains opened for the second act, I thought back to Wicked in London. My throat clenched and eyes welled with tears.  Despite some cataplexy, I was here, present and fully awake, and so my big awkward smile stretched even bigger, if that’s possible.

photo 2Sleep has stolen many moments from me – many throw-away moments, but also some “bigger” moments that hurt my heart to think about – like law school exams, family holidays, and Wicked. So to take back one moment felt like a small victory, a redemption, a second chance.

And maybe that second chance is a little sweeter, knowing how it feels to have lost that moment in the turbulent wreckage of an invisible illness. To walk along far enough in this crazy life to re-discover that sliver of joy, well, that’s what us New Hampshire gals call “WICKED AWWWSOME!”

wicked

11 Comments

  1. Heather on January 23, 2015 at 8:46 am

    So happy you got to see Wicked in Hollywood.
    We love that show so much. It would be terrible to think you missed out.
    We saw it in London a couple of years ago and it, among other things, inspired my daughter Riana (Xavier’s sister) to apply for Musical Theatre schools in the U.K. She has auditions in March and fingers crossed she’ll get in (although it’s tough, only about 300 places all up for about 3,000 applicants).
    If ever you can, go and see ‘Matilda’ also – it’s lovely (but Wicked is still no. 1)!
    Best, Heather

  2. Marcel on January 23, 2015 at 9:57 am

    Dear Julie,

    For many years, I resolutely banished any thoughts of sharing my personal views about Narcolepsy. For better or worse . . . I’m still undecided – mixed results . . .
    BUT, your recount of missing something you so desperately wanted to see has nearly brought me to tears. I have missed so very many amazing experiences at the behest of this f****n disorder. Reminiscing like this, I want to scream and shout like a madman at the frustration produced by this. I spent half of a round-the-world trip trying to remember what i missed. I feel ya, and sympathise. Thank you for you’re story.

  3. Susan on January 23, 2015 at 6:36 pm

    Delighted you had the chance to finally see the musical. I have an adult daughter with Narcolepsy and cataplexy. She loves the theatre, but is often afraid to attend because strobe lights will often bring on attacks for her. Can you tell me if this is a musical that she might have a chance to get through? I know there are no guarantees, but she and I like to know that she has a chance of seeing the whole production before we buy tickets. She’s given up concerts, but I spurge on theatre with her whenever I can. Your website has helped me immensely understand what she deals with on a daily basis. Thank you.

  4. Alex Withrow on January 23, 2015 at 8:43 pm

    Great post, Julie! So happy you liked the show again – I thought it was wicked cool! 🙂

  5. Melissa on January 23, 2015 at 9:23 pm

    So happy you had another chance to experience Wicked! And I must say that I am very impressed by your color coordinated outfit. For the record, I’ll always be around to watch over you–whether you’re sleeping or not! Still wish you’d given me that headband for keeps though. 😉

  6. Arnold on January 24, 2015 at 6:52 am

    Julie……..you did it!
    You beat it hands down staying up?
    I was very moved by your story, relating it to so many experiences of my own.
    That you went back into the ring of fire and came out standing tall____julie — that is the most we could do for ourselves—-fantastic you are — just fantastic.

  7. Gail Pean on January 24, 2015 at 2:28 pm

    You overcame the anxiety and enjoyed your favorite show! So happy for you and that Alex appreciated the humor. Another great post!

  8. Dorothylou Sands on January 24, 2015 at 9:01 pm

    I love musicals too. Some I have seen so many times that I know what is coming next. I can’t tell you how many times I have seen My Fair Lady, on screen and live. I usually don’t dose off more than a couple minutes during plays and movies and occasionally I make it through a movie without falling asleep at all.

  9. Tess on January 24, 2015 at 10:10 pm

    Slept through the guest speaker’s speech at my postgraduate graduation. What a loss.

  10. Kasha Oelke on January 25, 2015 at 5:51 am

    Aww, your post made me tear up! I’m so happy you got a second chance to see Wicked and conquer a goal that sleep originally took from you. What a great feeling that must have been! 🙂

  11. Jackie on January 29, 2015 at 2:52 pm

    I am awaiting a test to see if I have narcolepsy and have been reading a lot of things online – this story really struck a chord with me. I’ve fallen asleep at THREE concerts (Smashing Pumpkins, Steely Dan and Punch Bros.). All these years I knew it was kinda weird (I mean – who falls asleep at a Smashing Pumpkins concert in a giant arena??), but just assumed I was probably just really tired. Reading all these things is making things I thought were just me being quirky suddenly make sense. I’m anxiously awaiting my sleep test… thanks for sharing the story.

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