“You don’t strike me as the marathon type.”
There is a prolonged silence on the phone… I’m totally caught off-guard. Up until speaking with this particular friend, everyone else was ferociously applauding my efforts to train for the marathon. I’m used to saying “thank you” and taking a bow at this point of the conversation.
“Don’t you have to run another marathon to qualify first?”
Oh, so he’s confused me for a “qualifier,” the very different breed of human that runs marathons… well, to run marathons.
“No no no, I’m running for charity,” I explain, “It’s completely different. I don't have to qualify.”
Trying to paint over the awkward moment, I run my mouth about Wake Up Narcolepsy and the other three brave women who will be running with me for this cause. By the end of the conversation, my friend agrees with the rest: This is “Great News!” Thank you…
But I can’t help but read into my friend’s skepticism. On some level, he’s right. There is a “marathon-type,” and I’m not one of them.
Some people are born runners – it’s in their physique. I’ve always been an outsider peering in on their elite little runners’ world, like a child marveling at the miniature cityscape inside a souvenir snow-globe. I know I can’t enter, but I wish I could.
I ran cross-country in high school. I generally came in fifth place for my school’s team, which, I admit, isn’t totally terrible. However, I wanted to run faster and place higher. Once, I asked my coach what else I could do… He said there was nothing. Mind you, this man was an incredibly gifted coach, training us practically individually to reach our maximum potential.
So what was the insurmountable gap between me the elite pack? When they ran, they looked like gazelles. Their delicate long legs swept around in continuous fluid circles; it made me dizzy just watching them, never mind trying to keep up with them. When I ran, my legs chaffed.
So, if running wasn’t natural to me, what got me got me started? Honestly, my parents’ divorce. I was looking for any excuse to get out of the house, so even if running wasn’t pleasant, it was quiet. The fresh air became a therapy of sorts – a time I used to untangle what others’ said from how I felt.
For the first couple years, I ran one and only one route. Leaving home, I started up our forest-lined street towards downtown, Durham, New Hampshire. I crossed the University of New Hampshire’s property: through jam-packed parking lots, past dormitories and science labs, eventually reaching the University’s track, within their football stadium. I ran laps around the track until I got tired and headed home on exactly the same path.
And somewhere along the thickly-tree-laden streets of my hometown, I became addicted to running. Eventually, I switched my fall sport from soccer to cross-country and the rest is history.
The more I ran, the easier it got. And I don’t mean just a little easier, I mean a lot easier. It was like night and day; I’m not even sure why the two experiences are both called “running.” The beginning of running is like hiking through a jungle during a rainstorm whereas running on a regular basis is like watching a beautiful sunset on a beach.
Also, the more I ran, the more I relied on this time for myself. I’m not particularly good at relaxing; I don’t watch a lot of TV because it makes me anxious. I’m constantly in fear of “wasting my time.” Running forced me to get away, if even just for 30 minutes.
So why am I telling you all this? Because I need to remind myself of the ten years I called myself a runner (not the gazelle-type, just the average-type). As a law student with narcolepsy, I fell out of my usual ways. So now, with just 6 months until the Boston Marathon, I’m starting from the beginning again. Each breath weighs heavy in my lungs; each “light run” leaves me sore the next day. So, for now, I’m in the jungle and looking for the sunset. I’ll let you know if and when I make it to the other side.
Wednesday, November 25, 2009
Tuesday, November 17, 2009
Narcolepsy… What’s that?
When I tell people I have narcolepsy, I generally get the same response: “So you can fall asleep in the middle of a conversation?”
For the record, I’ve fallen asleep in a lot of strange places but I’m fairly certain I've never fallen asleep in the middle of a conversation. (Correct me if I'm wrong!) However, in all fairness, this is what I thought narcolepsy meant too, before I got it...
So, if narcolepsy isn’t what we think it was, then what is it exactly? Here’s my briefest of brief summary:
Narcolepsy is neurological disorder caused by the brain’s inability to properly regulate the sleep/wake cycle. The two most debilitating symptoms of narcolepsy are excessive daytime sleepiness and cataplexy. A person with narcolepsy experiences episodes of excessive daytime sleepiness comparable to how a normal person would feel after staying awake for 48 to 72 hours straight.
Cataplexy is a form of temporary muscle paralysis completely unique to narcolepsy. Cataplexy varies in intensity; a person with severe cataplexy may collapse to the ground, unable to move or speak for a few seconds to a few minutes.
Society correctly associates narcolepsy with sleepiness, however this sleepiness is generally perceived as harmless or humorous. In reality, narcolepsy is a serious chronic disorder that can severely impact personal and professional lives. Studies indicate that narcolepsy’s affect upon quality-of-life is comparable to epilepsy, multiple sclerosis, and Parkinson’s disease.
For more complete information about narcolepsy, please visit the following websites: Wake Up Narcolepsy, Narcolepsy Network, and Stanford Center for Narcolepsy
For the record, I’ve fallen asleep in a lot of strange places but I’m fairly certain I've never fallen asleep in the middle of a conversation. (Correct me if I'm wrong!) However, in all fairness, this is what I thought narcolepsy meant too, before I got it...
So, if narcolepsy isn’t what we think it was, then what is it exactly? Here’s my briefest of brief summary:
Narcolepsy is neurological disorder caused by the brain’s inability to properly regulate the sleep/wake cycle. The two most debilitating symptoms of narcolepsy are excessive daytime sleepiness and cataplexy. A person with narcolepsy experiences episodes of excessive daytime sleepiness comparable to how a normal person would feel after staying awake for 48 to 72 hours straight.
Cataplexy is a form of temporary muscle paralysis completely unique to narcolepsy. Cataplexy varies in intensity; a person with severe cataplexy may collapse to the ground, unable to move or speak for a few seconds to a few minutes.
Society correctly associates narcolepsy with sleepiness, however this sleepiness is generally perceived as harmless or humorous. In reality, narcolepsy is a serious chronic disorder that can severely impact personal and professional lives. Studies indicate that narcolepsy’s affect upon quality-of-life is comparable to epilepsy, multiple sclerosis, and Parkinson’s disease.
For more complete information about narcolepsy, please visit the following websites: Wake Up Narcolepsy, Narcolepsy Network, and Stanford Center for Narcolepsy
Tuesday, November 10, 2009
Introduction: From Where I Stand
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 to raise money for narcolepsy research with the Boston-based non-profit organization Wake Up Narcolepsy, 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.
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 to raise money for narcolepsy research with the Boston-based non-profit organization Wake Up Narcolepsy, 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.
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