Anatomy 101

I’ve just learned a new word: “piriformis.” It’s my new favorite word, I can’t stop saying it -- piriformis, piriformis. It sounds like something delicious, an Italian dessert perhaps. And in fact, “piriformis” means pear-shaped in Latin – which I find adorable. Who doesn’t love pears?


However, the context of how I learned my new favorite word is slightly less adorable. “Musculus piriformis” is Latin for pear-shaped muscle; and “piriformis” is the official name of the pear-shaped muscles in our rear ends. My more scientifically-inclined readers may cringe at this description, but to the best of my understanding – the piriformis muscle starts near the base of the spin and stretches outwards to attach to the hip joints.

How did I discover this? I didn’t. My phenomenal sports massage therapist discovered it (at Tranquil Space in DC, if you’re in the area, I highly recommend this place- awesome massages and yoga). I’m usually pretty “tough” when it comes to sports massages, knowing that the discomfort will be worth it. However, when it came to my piriformis – I couldn’t take the heat. Turns out, my pear-shaped muscles were way too tight. I was sent home with instructions to look this up online and get stretching.

Although I was grateful for this information, I couldn’t help but feel slightly overwhelmed by the ever-growing list of body parts requiring my undivided attention these days. I used to think of “running” as a simple form of movement – a fast version of walking. However, now, I’m starting to see that running is much more than that.

In a way, running has become an odd exercise of self-discovery – almost an introduction to my own anatomy. I discovered my “IT bands” a few years ago -- the bands of fibers running down the sides of my legs responsible for the minor pains below my knees. And of course, my “tight-butt” issue lead to my most recent discovery of the piriformis muscles.

However, the discoveries aren't all bad. Just a few weeks ago, I discovered some new muscles developing in my stomach region; I believe these are called “abdominal muscles.” I’ve heard a lot of hype about these infamous “abs” before, but never truly felt them like I do now. I can’t help but hope that my abs turn into "the Situation.” (Jersey Shore, anyone?) But this may be asking a little much.

So far, it’s been a fascinating experience to watch and feel my body change. I'm more in-tune with its needs and feel stronger than ever. And I can’t help but think how ironic this is in a way… That it took living with a serious chronic illness like narcolepsy to bring me here – face-to-face with the greatest athletic challenge of my life.

Decisions Decisions.

“What if you don’t finish?”

My brow furrowed and my eyes squinted, as I mulled the question over in my head… Hmmm. What happens if I don’t finish the marathon? I didn’t know how to respond; I drew a blank.

Noticing my dumb-founded expression, my inquisitor quickly backtracked, thinking they’d deeply offended me. Re-clarifying, they said, “Oh wait, no, it’s not that I don’t think you’ll finish. I’m just saying, with the fundraising… there’s a lot of pressure on you to finish.”

Fair enough. Yet strangely, I didn’t feel any pressure about finishing versus not finishing. Frankly, I’d never given it much thought. In the three months I’ve been training, I’ve never once pictured myself crossing the finish line. Likewise, I’ve never imagined myself not crossing the finish line. How could this be?

Looking back on it now, my decision to run the Boston Marathon for narcolepsy was one of the most thoughtless decisions I’ve ever made.

There are some decisions we take very seriously. We weigh the pros and cons. We think through worst and best-case scenarios. We belabor the main points over and over in our heads. We get advice from our friends and family. And hopefully, in the end, we make choices we can live with.

Then, there are other decisions we make without thinking. Impulse purchases and last-minute choices… These are often the decisions we regret the most; the times we hope we kept the receipt and pray for a forgiving return policy. Was running the marathon just a whimsical folly I’d later regret?

There are plenty of reasons why I should have said no to this opportunity. Intense exercise makes me tired – I’m already tired enough as is, why make life harder on myself? Running could be dangerous with my cataplexy – I could have muscle weakness while running and possibly fall and injure myself. My medications are incredibly dehydrating – I already struggle to stay hydrated, never mind hydrating for long-distance runs.

And narcolepsy aside – I have a history of tendonitis in my knees which could disrupt or end my training if I’m not careful. These are the most obvious factors weighing against my decision. I’m sure I could think of more, but I’ll spare you.

Believe me, I take the issues listed above very seriously. I’m not going to sit here and tell you that it’s all “mind over matter.” It’s not. My narcolepsy and tendonitis are huge considerations in my training. There are days I’m scheduled to run that I decide not to because of my cataplexy. To ward off dehydration, I consume such copious amounts of lemon-lime Gatorade that I think I deserve official Gatorade sponsorship. To combat my tendonitis, I spend more time stretching than I do running and most nights, I can be found lying with legs elevated and ice-packs on both my knees.

(I realize that I haven’t blogged much about these complications, subconsciously glossing over the difficulties to focus more on the fun and positive parts of this journey. I hope to open up a bit more in the months ahead to give a more honest portrayal of this experience.)

For now, what I mean to say is – I don’t think I’m invincible. I’m not Superwoman, Bat Girl, Catwoman or any other supernatural heroine. I know that “health” is not the all-inclusive guaranteed full-package deal it sometimes appears to be. Narcolepsy has taught me to listen to my body and respect its boundaries. I know I am fragile, twistable, breakable... I am 100% fallible.

And yet, when asked if I’d like to run the Boston Marathon for Wake Up Narcolepsy, I said yes in a heartbeat.

Maybe there are some decisions that are beyond thought, beyond logic, beyond science, and beyond judgment – good or bad. Decisions that others can’t help us make… Things we must do because if we didn’t at least try, we’d only be cheating ourselves.

There will always be complications and there will sometimes be failures. I don’t know if I’ll cross the finish line in Copley Square on April 19th, 2010. At this point, I have no reason to believe that I won’t, but the future is ultimately out of my hands.

The way I see it – I could either sit around thinking about the possibilities: the chances of something going wrong, the chances of everything going right... the what ifs and maybes… OR, I could stand up, start running, and see where it takes me. I choose to run.

One Year Ago Today...

One year ago today, I did not want to leave my apartment. It was a frigid Saturday night in Boston, with temperatures in the 10s and 20s. I’d told a friend I would go to an event with her, but, as usual, my inspiration had faded with the setting of the sun. I would've been totally content to cancel our plans, curl up in bed and call it a night.

Unfortunately, the person I was meeting up with was a “new friend.” Or rather, someone I’d met once and wanted to be friends with. This person also had narcolepsy but was further along in her understanding of the disorder than me. I thought it would be poor form to cancel last minute on this budding friendship, so begrudgingly wrapped myself in layers of clothing and headed out into the cold.

We met up at Vox Populi, the trendy bar/restaurant in Copley Square. The event we were to attend was taking place upstairs, yet we were totally unsure of what to expect at the top of the stairs. We were a pair of confident put-together women, yet admitted to one another that we were both nervous.

About a week earlier, we’d received an email from the Narcolepsy Network telling us about a “new and exciting endeavor spearheaded by Boston member Kevin Cosgrove and his new organization, Wake Up Narcolepsy.” A new narcolepsy organization based in Boston?! And who was this Kevin Cosgrove guy?! This event at Vox was the first Wake Up Narcolepsy fundraiser, so out of curiousity, we'd made plans to attend together.

Much to our surprise, there was a boisterous crowd upstairs. People engrossed in conversation, getting drinks at the bar, eating appetizers, selling and buying raffle tickets. It looked like a trendy private party -- maybe even a scene out of Sex in the City. All these people were here for a narcolepsy fundraiser? Couldn't be...

We approached the check-in table and found out that, yes in fact, this was the Wake Up Narcolepsy fundraiser. The person who checked us in pointed out who Kevin Cosgrove was in the crowd, but he was in the middle of a conversation so we didn’t approach him right away.

Later on, we met Kevin and had a conversation that eventually changed my life. Kevin’s goal was to fundraise for narcolepsy research and raise awareness in the process. He believed that there were stereotypes and misconceptions about narcolepsy, but that speaking up about the realities of narcolepsy may help change this. Prior to meeting Kevin on January 24th, 2009, I'd felt passionate about these same issues, but had yet to find a good outlet for my feelings.

There were many things that impressed me about Kevin that night. The amount of people he’d gathered around his cause, the incredible amount of money he raised, his heartfelt speech to the group, the awesome raffle prizes given out… But what hit home the hardest to me was Kevin’s willingness to sacrifice his personal privacy about having narcolepsy for the greater good of the community.

Given that one year later, I am running the Boston Marathon for Wake Up Narcolepsy, blogging about it, and writing a memoir about narcolepsy – I suppose it goes without saying that I found Kevin’s decision to speak up both inspiring and infectious.

Still, sacrificing my personal privacy was not an easy decision to make – and may not be the right decision for everyone. We have our whole lives ahead of us and may be treated unfairly by those that continue to have misconceptions about narcolepsy. (Of course, if we had our way, there would be no misconceptions, but we’ve got a ways to go on that one.) None-the-less, I believe that for me, this was the best decision I ever made and I thank Kevin for showing me that it was okay to raise my voice and be proud of what I’ve been through and where I’m going.

Congratulations on a successful year, Kevin & Wake Up Narcolepsy! Here’s to another great one. Also, I’m sorry that I resisted going out into the cold for your first event, but hey – look what Wake Up Narcolepsy has me doing now – braving the winter weather all the time to train for the marathon. Thanks for letting me be a part of your organization.

This just in from Boston...

Today in the mail I received official notice from the Boston Athletic Association confirming my acceptance into the 114th Boston Marathon on Monday, April 19th, 2010! So it’s actually happening, this 26.2 mile run of mine.

I ran 14 miles last week, and although it went smoothly – it’s hard to imagine that this was just a little over half of what I will run in April. And although I’m still on board, I’m beginning to sense that there’s something rather over-the-top dramatic about marathons -- they’re like epic battle movies or six hour Wagner operas.

Frankly, I’m not sure humans were meant to go about running 26.2 miles here and there. What in the world compelled people to start doing this? And more importantly, what am I, Julie Flygare, doing mixed up in this crowd?!

Well, I suppose I like a little drama in my life. I enjoy testing my limits every once in a while, and as I’ve said before, I certainly wouldn’t be doing this if it weren’t for my desire to raise awareness and funds for narcolepsy…But still, I have moments of panic. Am I in over my head?

In closing, here’s one of my favorite quotes about writing that I think may be just as applicable to running a marathon:

“It’s like driving a car at night. You never see further than your headlights, but you can make the whole trip that way.”       -E.L. Doctorow

Dangerous Laughter

I was already dressed for my run: my favorite mint-green running shorts, baggy white t-shirt, and sneakers double-knotted. My iPod lay on the kitchen counter, charged up and ready to go. But before I could leave, I got caught up in a lively conversation with my roommate in our living room. Something was funny and when I laughed, I felt it for the first time.

It was an ideal late afternoon in the Spring of 2006 – an unseasonable warm breeze whispered in my ear, “you should really be outside.” I was looking forward to a nice easy 4 mile run along the Charles River, it knew it would be one of those days that would remind me just how much I love Boston.

See, this city isn’t always like this. It’s cold and icy for far too long, and just when you’re certain to lose your mind, it all turns to mud and slush straight through May. There are nice days sprinkled in there, like today, but the bad weather is always on the radar. I’ve lived in New England my whole life and like most seasoned New Englanders, I'm physically incapable of taking the good days for granted.

I don’t remember what we were talking about exactly, but one of us said something particularly humorous and when I started laughing, my knees buckled and then caught themselves quickly. It couldn’t have lasted any longer than a second, but the sensation was so foreign.

“Did you see that?”

“See what?” my roommate asked, turning towards me – her eyes still wild from our joke.

“I don’t know exactly, my knees…. they just did something weird, they gave out on me.”

My rooommate hadn’t noticed a thing. We stood only a few feet from one another, yet it had happened so quickly and obviously she wasn’t watching for strange motions below my mid-drift. But still, how odd. It was as if I’d fallen, but only on the inside -- while remaining constant and strong on the outside.

We tried to re-spark the boisterous conversation, but the moment had drifted.

Not long after, I left for my run as planned. I followed my usual  route – crossing the BU Bridge onto the Cambridge side of the river, running back towards the Boston cityscape until reaching the MIT Bridge, crossing back into the hustle and bustle of the Back Bay, before darting off to the right to re-enter the Fenway.

Trampling on pavement for 40 minutes, my legs moved with a power and ease. I was an avid runner in 2006, averaging 15 - 20 miles a week. The weakness in my knees never returned that day, neither during my run nor after. It was curious, but hadn’t hurt or harmed me in any way. By nightfall, I forgot about it complately... Forgot about it until about a month later, when it happened a second time. Once again, while I was standing and laughing.

Over the course of that spring and summer, my knees gave out on me with increasing frequency. For lack of a better name, I started calling it " my knee thing.” It wouldn't be until July of 2007 that I would find the proper name for this -- "cataplexy." But all this is a story for another day.

At the time, in the Spring of 2006, I didn’t know that this was just the beginning. It never occurred to me that this small weakness would spread to my hands, my neck, my head and eventally lead to full-body collapse. I never would have believed you if you told me that I’d come to avoid laughing out of fear of falling. All this was truly unimaginable on this carefree spring day. I was 22 years old and in perfect health.

REM Runner's New Year's Resolution

I hate stretching.  Always have.  Always will.  Some runners never stretch – I used to be one of them. Unfortunately, I learned the importance of stretching the hard way… (A story I’ll share in a future blog post). For now, let’s just say – if I somehow manage to cross the finish line in April, it will be as much of a testament to my disciplined stretching routine as my disciplined running routine.

What is it I hate about stretching so much? For one thing, I find it incredibly boring.  When I feel like exercising, I want to get outside and get sweaty, not sit around touching my toes and counting to 30. Stretching takes a form of patience that doesn’t come naturally to me.

Worst of all, the benefits and progress of stretching are subtle and intangible. Even though it looms over me that if I don’t stretch, I’m much more likely to get injured – the threat isn’t quite eminent enough to force me into action daily.

For me, the running is the exciting fun part of this journey. Although the long runs can be tough, they are satisfying in a very real way.  When I report, “I ran X number of miles today!” I quickly receive congratulations and gain respect.  Somehow, reporting that “I stretched my quads, gluts, and IT bands today!” doesn’t have quite the same ring to it.

Therefore, in the spirit of the New Year, I resolve to formulate a legitimate stretching routine and add it to my marathon training calendar.  One idea I have to try and incorporate stretching into my daily life is to stretch while watching mindless television.  With an unhealthy addiction to MTV’s Jersey Shore and new seasons of the Real World Washington D.C. and the Bachelor starting up, this plan should leave me more limber than ever…  We shall see.

If you have any other ideas for how I can make stretching less evil, please let me know.  Happy New Year!