Introduction: From Where I Stand

by julie on November 10, 2009

There are times when I can’t walk from one side of a room to the other without falling to the ground. I have a disorder called narcolepsy with cataplexy, and cataplexy is a rare form of temporary muscle paralysis that can lead to full body collapse. There is no cure for this disorder at this time. This spring, I will run 26.2 miles towards finding a cure.

Entering Boston College Law School in 2006, I planned to run the Boston Marathon by the time I graduated in 2009. My father attended Boston University Law School in the 70’s and ran the Boston Marathon in his final year of school, (with an impressive time of 2 hours and 54 minutes). I planned to do the same, give or take an hour… or two. See, it was my dad’s opinion that “the last year of law school was so boring that training for the Marathon was simply the only way to stay sane!” However, life doesn’t always go exactly as planned.

At the beginning of my second year, just four days after my 24th birthday, I was diagnosed with narcolepsy with cataplexy. I’d heard of narcolepsy before, but had no idea it was a serious and rare disease. I’d never heard of cataplexy.

Much to my own surprise, narcolepsy with cataplexy proved to be a complicated and somewhat isolating disorder to adjust to while in law school. On the outside, I looked the same. I hid in bathrooms and the basement of the library to take naps. I avoided school and social occasions when I might have cataplexy. Despite my best efforts to shield myself, cataplexy still brought me down at times. I’ve collapsed in elevators, across hotel hallways, on busy sidewalks and countless times inside my apartment.

Although there is no cure, I manage my narcolepsy and cataplexy with a strict 2 times-a-day and 2 times-a-night medication regimen. (Yes, I wake up in the middle of the night to take medication). The best medication available improves my symptoms but does not erase them. In addition, these drugs often make me ill in other ways. Thus, my condition is far from “normalized.”

Need-less-to-say, my last year of law school wasn’t quite as boring as my Dad’s. Although I did not run the Boston Marathon before I graduated, I am proud to say that I stayed in law school and graduated on time with my classmates last spring, on May 22nd, 2009.

My experience with narcolepsy and cataplexy changed my perspective in two ways. First, during periods of time when I experience cataplexy, life looks very different. With cataplexy, a normal room looks like an obstacle course or a video game. However, the challenge of making it from here to there without falling is very real with cataplexy. Sometimes I win and sometimes I lose.

Second, when I do not experience cataplexy, my world looks different as well. Before narcolepsy and cataplexy, I never questioned my body’s capabilities. It never occurred to me that standing, walking, and running were gifts given to me. These things were just always there – as natural and expected as the sun rising every morning. It is only now that I have spent time on the floor, lying as a haphazard stack of bones in the dust, that I understand what it means to be able to stand, to walk, and to run. Thus, when I do not have cataplexy, I try to live in the moment inside my body – with intention and gratitude.

Just half a year out of law school, I’ve decided to face the Boston Marathon once again. However, it is certainly not out of boredom or athletic prowess that I take to the streets to train. As a Division I college athlete, athletics have always been a huge part of my identity. However, as a person with narcolepsy managing medication and symptoms over the past couple years, I’ve let go of this discipline considerably. I must admit, I’m far from being in the best “shape” of my life.

Nonetheless, when given the opportunity to run the Boston Marathon this year for narcolepsy research, I knew it was time to let my demons go. While in law school, I found it difficult to work-out before class or before doing my homework, as I was often less productive after “hitting the gym.” Now, working as a writer, I plan to schedule my training for the late afternoons and early evenings, after I’ve finished my “intellectual” work for the day.

While running on the treadmill, I often watch my legs in the full-length gym mirrors as they bend and straighten endlessly, pounding on rubber, going nowhere… Before I had narcolepsy, I watched my legs and wondered whether they were chunky or normal, pale or tan, ugly or attractive. Now, I see them quite differently. I watch as they glide forward and catch themselves effortlessly. I wonder why my knees hold strong sometimes and not other times. Most of all, I am in awe of their abilities and feel compelled to not take my “healthier” times for granted.

I am running this marathon both for myself and for others. Recently, I attended the annual Narcolepsy Network conference in Jacksonville, Florida. Narcolepsy Network is the national patient organization for people living with narcolepsy. Among the attendees were a number of children and young adults living with narcolepsy. These kids are some of the brightest and most mature I’ve ever met. However, I was humbled and saddened when I heard their stories of how narcolepsy disrupted their young lives: falling under the spell at the young age of 6 or 10, diagnosed during the 7th grade or during high-school.

Many of these young children must take medication two times a day and two times a night, just like me. I can’t help but think: all this has been difficult enough to adjust to in my mid-twenties. I can’t imagine seeing my childhood through their eyes. Yet, they have their entire lives ahead of them, and there is currently no better treatment on the horizon, no miracle-cure around the corner. Thus, I will use my healthier times to run 26.2 miles this spring to raise money for narcolepsy research for them. Running a marathon may feel like a nightmare, but finding a cure will be a dream come true.

 

{ 5 comments… read them below or add one }

Amelia Swabb December 8, 2009 at 4:32 pm

hi Julie! I just saw the link to your blog on g-chat and read your posts. I loved reading about your experiences and about Narcolepsy which I know little about. I'm excited for you to run the marathon! I'm rooting for you!

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metaphoria February 5, 2010 at 12:26 am

Hi Julie,

So glad to find you and your blog! I am a 30 yo living with Narcolepsy who also just got into running. 🙂 Like you, I was diagnosed at 23. After the onset, I pretty much stopped identifying as an athlete. Luckily in the last few years I have realized again what my body is capable of!

I completed a 4-mile race in December, will complete another at the end of this month, and am training (in the cold!) for a 10 k in April.

I will keep you and your Wake Up Narcolepsy team in my thoughts! If you ever want to chat about training with cataplexy or running while sleepy, please reach out!

Best of luck to you. Know that you are helping so many out there! 🙂 Melinda

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Anonymous March 29, 2010 at 9:27 pm

Jules! I think about you all the time. Your beauty and determination, your integrity and your humor, your love of life and all it's obstacles…. is amazing. YOU are amazing. Good luck in Boston. You'll rock it. I will be there in spirit!
Sending love from NM, FOB

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Liet-Kynes December 26, 2010 at 1:21 am

I have been reading your blog for a while but until now I had never gone back and read these old posts from before I followed the blog. I'm really glad I did – this post is very moving. With your life and what you choose to do with it you are an example of facing adversity with determination and grace. I have narcolepsy without cataplexy, and life for me is difficult – I can't imagine dealing with cataplexy to boot. You show me how to strive to make my medical burden a positive force in my life. I hope you will keep sharing your story with us, because I, for one, will read. And I will benefit 🙂

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Travis Farris October 23, 2014 at 3:51 pm

I ve had narcolepsy senice i was 10 and now i am 36 I know how to control my emotions we’re don’t have cataplexy

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