As fast as a Kenyan...

Some of you might remember my “rivalry” with the Kenyans for Boston 2010 (I wrote about the rivalry here). Thank you to those that believed in me and said you’d be cheering for me over the Kenyans. However, I regret to inform you that the rivalry is over.

My training is going fairly well, but the Kenyans’ training is going better. Facts are facts, they’re going to beat me. So, as they say – “if you can’t beat ‘em, join ‘em” (an English proverb and a catchy Queen song) In the face of imminent defeat, I’ve decided to join them.

Here’s how the rivalry dissolved.  On my way out of my building for my 18 mile run last week, I stopped by the front desk to leave my water bottle and “GU” packets with Freddy (my super-cheery doorman and Kenyan “frienemy”). Freddy took my things for me and asked how far I would be going. I told him.

“Wow. 18 miles…”

There was a spark in Freddy's eye and I was just waiting for the banter to begin – the Kenyan smack-talk. But there was no mention of competition today. Today was different.

“I can tell you are very determined,” he said.

“Well yes, I think I am.” (I always love a good ego-boost.)

“When you come back, I’m going to give you something special," Freddy said, "I’m going to give you a new name - a Kenyan name!”

I couldn’t wait to return home, for many reasons, among which was to get my Kenyan name. After running my first 7 miles, I returned home for my first hydration break. Freddy handed me my water and GU packet.

“Can I have my name now?” I asked.

Freddy laughed furiously, “No, of course not. You're not done running yet. Tomorrow - I’ll give you your name tomorrow.”

Patience isn’t my virtue. The rest of my run went well, but I was anxious for my new name. The next day, I hobbled downstairs to the front desk – incredibly sore. 18 miles had done some serious damage on my body. Freddy smiled when he saw me. He knew what I’d come for and pulled out a post-it note and wrote down one word – "Wanjiru."  Freddy explained that this name meant that I was a leader. I took the post-it and thanked him.

Since then, every time I walk in or out of the building, Freddy yells out “Wanjiru!” from the front desk. I doubt Freddy knows my real name – our building is huge and there’s no reason for him to know my name. But my real name hardly matters. To Freddy, I’m the Boston Marathon runner named Wanjiru.

I wanted to know more about my name, so went online to learn more. Turns out, Wanjiru is a very traditional name among the Kikuyu people of Kenya. (The Kikuyu people are the largest ethnic group in Kenya, representing 22% of the country’s population.) My name associates me with a clan of people who are known for their leadership skills, but also as strong warriors and medicine men.

Training for the marathon, I feel like a warrior of sorts. Also, I share my name with another Kenyan marathon runner, Samuel Wanjiru – who won the 2008 Olympics marathon, setting an Olympic record time of 2:06:32. In 2009, Samuel won both the London Marathon and Chicago Marathon, running the fastest ever marathons recorded in the United Kingdom and United States, respectively.

So, although I’m sorry to say that the rivalry has dissolved, I think it’s for the best. I’m honored to be connected to the Kenyans – and I’m hoping that my new name, Wanjiru, helps me run as fast as one!

Running into Narcolepsy (Part II)

(Note to reader: This is a continuation of my last blog post. To read Part I, click here.)

On July 10th, 2007, I returned to my school’s health services to meet with the sports medicine specialist about my “runner’s knee,” an issue that had developed over the last couple months.

Athletics had always been an important part of my life and my first year of law school was no different. Exercise was my break from "lawyer college" – a small slice of sanity I clung tightly to. By spring of 2007, I was running 7 miles twice a week, in addition to 3 or 4 mile runs on my "off" days. I also played squash a couple times a week. I may have been in the best shape of my life that spring and perhaps I ran myself into the ground. 

At some point, I started to feel a sharp pain under my right knee. At first, I tried to just run through it, hoping it would just go away. Unfortunately, the pain didn’t go away, it did the opposite – it got worse. By June, the pain came on almost immedeately when I started running and lasted the entire workout. Next, I tried staying off it for a week, then two weeks but each time I went back to running, the pain returned like an unwelcome house-guest.

By July 10th, I was anxious to meet with the sports specialist. As crazy as this may sound, part of me thought that the knee-pain was the root of all my other problems. If only I could get back to running 20-30 miles a week, then maybe I would feel better… And maybe my sleepiness would go away… Unable to find any better explanations for why I felt so "off" that summer, my “runner’s knee” took a lot of the heat.

The sports medicine specialist was a younger female doctor. Pleasant, but all business – she conducted a thorough examination – twisting and turning, flexing and pointing, standing and sitting. And all the time playing a game of 20 questions. Somewhere in the midst of this intense, almost ritualistic examination, a question took me by surprise:

“Do your knees ever give out on you?”

“No. Well, yes, there’s this thing that happens when I laugh but no one knows what it is... Sorry, it has nothing to do with my running, it’s just a random thing that happens to me sometimes.”

I expected we’d continue on with her next rapid-fire question. But when I looked up at her, she was looking right back at me; apparently it was still my turn to talk. So I began telling her the same ridiculous tale that been telling friends and family members over the last year. The same crazy story I’d been painfully repeating in hopes that someone else knew the feeling – the falling inside my knees. (I described this more thoroughly in an earlier post, "Dangerous Laughter")

“When something is funny, my knees give out on me slightly, as if someone hit me behind the knees, but then they catch themselves and quickly straighten up again. The incidents are getting worse – it’s a much bigger dip now…”

At first, the doctor looked at me like everyone else. But then she asked me to tell her more, and as I rambled on, she looked at me differently. It wasn’t her specialty but she thought she’d “heard of something like that before.”

She twirled around in her chair to face a clunky black and white computer screen. Sitting on the examination table just behind her, I read over her shoulder - my curiosity was uncontrollable. She hit only a few keys on the keyboard and I’ll never forget what I read “...loss of muscle tone....with emotions, such as laughter...” That was it! It was as if the words had been written exactly for me.

She wrote one word, like this --  “cataplexy(?)”on a piece of scrap paper and told me to look up when I got home. She also said she’d be happy to refer me to a neurologist about this if I wanted. And then, we went back to talking about orthotics and stretching.

Leaving health services, nothing was truly definitive – I needed x-rays on my knee (that would later lead to a diagnosis of tendonitis and a frustrating expedition into the world of physical therapy). But there was a bounce in my step as I hurried to my car - I held this new word “cataplexy” in the palm of my hand.

Back in my apartment, I went online to look up cataplexy. I linked to a Wikipedia definition:

“A loss of muscle tone with strong emotions, most commonly laughter. Only found in people with narcolepsy.”

I gasped in disbelief. Narcolepsy? I was confused, did I have cataplexy or narcolepsy? I knew very little about narcolepsy but thought it was just a joke about someone falling asleep in the middle of a conversation. I'd never fallen asleep in the middle of the conversation.

However, as I read more definitions and visited more websites - everything began to make sense. Turns out cataplexy is a symptom of narcolepsy, so I probably had "narcolepsy with cataplexy." And narcolepsy wasn’t the joke I originally thought it was. This was like hitting two birds with one stone. I shook in the silence of this lonely self-discovery.

This was one of the most overwhelming and underwhelming experiences of my life. On the one hand, it was as if someone was holding a mirror up to me, showing me the last couple years of my life from a totally new perspective. Another prominent symptom of narcolepsy is “hypnagogic hallucinations” and reading more about these, I realized that I’d been experiencing these for a few years now but had been brushing them off as some “really bad dreams.”

I’d never connected the bad dreams to the sleepiness or my knee-buckling laughter. These were some of the most random parts of my life coming together under one word – narcolepsy. Three birds with one stone. Narcolepsy… Really? (And I'd later find out that my unexplainable weight gain was probably linked to my narcolepsy as well. Four birds - one stone.)

However, on the other hand, this discovery was as meaningless as a horoscope or fortune cookie. At the time, I didn’t know that this was just the beginning of a much longer journey. Knowing the right words meant that I was not the only one. It made it real. But I also assumed that it made it better. I thought I’d just solved the puzzle, and now making it go away would be the easy part.

I thought I’d just been on the rollercoaster. I didn’t know that the truly mind-boggling, upside-down spinning, nauseating, big scary roller-coaster was still yet to come. Silly me.

I'd never had a rare disease. I'd never been an unprofitable investment for a pharmaceutical company. I’d never taken medication that made me better in some ways and sicker in other ways. I’d never known what it felt like to have no better options.

So even though this concludes my personal episode of grey’s anatomy, and I’m rolling the credits now to profusely thank the sports medicine doctor for cracking the case, I’d like to remind you that, for me, this was just the kiddie-coaster. Learning to live with narcolepsy has been the much bigger and scarier ride.

Running into Narcolepsy (Part I)

On July 10th, 2007, I entered my school’s health services with "runners' knee" and exited with narcolepsy. This is the story of how I literally ran into my diagnosis. (Note to readers: I’ve broken this story up into two parts to keep my blog posts shorter… And to keep you, my patient and loyal readers, begging for more!)

To be clear, we’ll need to rewind exactly one week, to July 3rd, 2007, when I visited health services for the first time. I entered the doctor’s office with three problems I wanted to “take care of” before my second year of law school. First, I felt tired all the time; second, my knees were increasingly giving out on me when I laughed; and third, I had pain under my knees when running.

Oddly enough, I have a photocopy of the doctor’s notes from this July 3rd visit, given to me at some point for referral purposes. I kept this paper and when I rediscovered it years later, I could hardly believe what I read. So first, I’ll let the record speak for itself:

1. “I think I have a sleep disorder,” sleeping all the time, never feels rested. Student notes daytime sleepiness for 1 year. Usually gets 8 hours of uninterrupted sleep. Her boyfriend does not comment on snoring. Especially difficult time driving, any distance.

2. When she’s laughing very hard her knees give out and head is heavy. Knees buckle with laughing.

3. About 15 lbs. weight gain since May 2007 (three months ago). Is quite physically active, plays squash, etc.

I remember this meeting going a lot like this. (I’ll explain later why reading this page surprised me years later.) But for now, I need to add a few memories of my own to compliment the doctor’s notes… The things that didn’t make it into the records...

First, when describing my sleepiness while driving, I used the example of not being able to drive an hour without feeling so tired that I had to pull over to get coffee or walk around to wake up. The doctor responded, “Well, everyone gets sleepy when driving. Even I have to stop to get coffee sometimes.” I remember thinking to myself, “Maybe she’s right, maybe there’s nothing wrong with me.” But then again, something else crossed my mind - the tiniest of inclinations really – telling me that “For some reason, I don’t think this doctor and I are talking about the same kind of sleepiness...” But I couldn’t be sure – I had no way of measuring my sleepiness against hers to determine if mine was normal or not. I only knew what it felt like to be me.

Second, after describing my knees giving out on me when I laughed, the doctor said she’d never heard of anything like that before. I suggested that I thought it might be neurological and she said “Yes, perhaps... I’ll let you go see a neurologist if you really want, but I imagine it’s just some sort of weird disorder you’re just going to have to get used to.” (Not exactly the answer I was looking for, but okay... moving on.)

Third, I brought up my other knee problem - the pain under my knees when running. The doctor set up an appointment for me to see their sports medicine specialist a week later, on July 10th 2007.

Given my daytime sleepiness and my strange unprecedented weight gain (something I hadn’t totally processed until they put me on the scale at health services), the doctor thought something might be wrong with my thyroid. She ordered some tests to check my thyroid and I went on my way - back into the haze of uncertainty.

Now, re-reading this peice of paper, it seems somewhat obvious that I presented a classic case of narcolepsy with cataplexy to this doctor (including the unexplainable weight-gain). However, there are two reasons I don't blame this individual for not figuring it out. I presented the sleepiness and the knee-buckling laughter as two completely seperate problems. Although I listed them back-to-back, it never occured to me that they had anything to do with one other. I probably would have resisted any suggestion that they were related.

In addition, I do not believe this docotor is a "bad doctor" by any means. In fact, her understanding of narcolepsy (or lack thereof) is actually quite typical in the primary-care community.  I have heard countess similar stories in the narcolepsy world. Although narcolespy effects about 200,000 people in America (about 1 in every 2,000) - on average, people with narcolepsy report experiencing symptoms for 3 to 5 years before receiving an accurate diagnosis.

There are a host of reasons why a disorder of this prevelence passes under the radar, which I will not get into on this blog. However, this may help put the prevelence of narcolepsy into some context for you: narcolepsy is ten times more prevalent than ALS (Lou Gehrig’s disease), half as prevalent as multiple sclerosis, five times more common than cystic fibrosis, and about one quarter as prevalent as Parkinson’s disease. (If you'd like more information or sources for this info, I've written a concise essay on this topic that I'd be happy to share with you if you email me.)

Regardless, this pattern of delayed diagnosis is a huge part of why I'm raising awareness and running this marathon. In the time between the onset of symptoms and diagnosis, people with narcolepsy may suffer huge personal or professional consequences - lose their jobs or get into life-threatening predicaments.

Coming later this week -- Part II of the story. Check back to find out how my runners' knee turned into an accurate diagnosis of narcolepsy with cataplexy! (To read Part II, click here)

Why Not Today.

I was looking forward to my 3 mile run today, as these shorter runs have become a comforting and stress-relieving part of my winter routine. However, I’ve decided that it’s best that I don’t run today. Hopefully I’ll be able to get this run in tomorrow, so it’s really not the end of the world. None-the-less, I think it’s worth explaining why not today.

In an earlier post, I promised that I would be more honest about how narcolepsy affects my training.  I wrote, “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.” So here’s my first attempt to shed some light on my own darkness:

Lately, I’ve been on top of the world. Much to my own surprise, my running is going incredibly well (knock on wood). The tendonitis in my knees is well under manageable control. I’ve even grown to almost enjoy stretching! Coordinating my running, stretching, icing, hydrating and balanced eating schedules has been a big challenge, but something I’ve been more than happy to take on.

However, on top of all that, I’m simultaneously coordinating an equally complicated schedule of narcolepsy medications and symptoms. I rarely talk about this with anyone – as I feel that it would take hours to explain. Why so complicated? Well, a few reasons. First of all, each drug affects the multiple symptoms of narcolepsy differently. Second, the drugs interact and may change the effectiveness of each other. Third, the timing of when I take these drugs determines when I can sleep, eat, drink alcohol, and drive. Fourth, there are tolerance issues to consider, as some of these drugs will stop working if I use them on a constant basis. Lastly, I experience side effects from these drugs – some more tolerable than others.

It may be important to note that these drugs are not a cure for my narcolepsy, nor do they “normalize” me by any means, however they do help me to achieve a much higher quality of life. Without these treatment options, my life would be entirely under the control of cataplexy (collapsing to the ground) and pervasive sleepiness. This is the reality of my condition that I’ve never fully lived, since I was lucky enough to start treatment just as my symptoms were becoming truly disabling. Thus, I must balance my frustrations with the limitations and drawbacks of these drugs with my appreciation for their existence. These drugs are a big pain, but when it comes down to it -- there would be no “REM Runner” without them.

Still with me? So, anyway, it’s a lot to coordinate, but I’ve gotten much better at it over the past couple years. I know now that I must prioritize my treatment to get the most out of the rest of my life. As I like to joke, my narcolepsy is “my baby.” However, today is just one of those days when something slightly out of my control put my baby in the corner.

My nighttime medication, taken twice every night, is vital to stabilizing my cataplexy. If I do not get both doses, my cataplexy will become a looming factor the next day. This may only mean a few knee-dips or an increased chance of dropping something I’m holding in my hands. Or this may mean that I have a bigger cataplexy attack later in the evening. Regardless, I try to avoid all of this as much as possible.

Last night, I took no nighttime medication, as I had none to take. My next shipment is in the mail, however, due to the blizzards here in DC, we haven’t received mail in my building for literally a week. Obviously, I never thought that one blizzard would turn into two blizzards and effectively bring civilization in DC to a halt.

So, without any nighttime medication, my sleep was fragmented but bearable. However, upon walking out into my living room this morning, I felt a tinge of cataplexy. For some reason, I wasn’t expecting to see my darling roommate at the kitchen table. It was just a subtle surprise, nothing drastic, but enough to turn my legs to jello for a second, I guess. (What can I say, Steve, you make me “emotional!”) Signs of cataplexy in the morning scare me, as it usually only gets worse as the day goes on. Luckily, there’s good news, bad news, and more bad news.

The good news is – there’s another drug I can take that will immediately wipe out my cataplexy for that day. The bad news is that I can’t take this drug everyday because of tolerance issues. And the other bad news is, even when I take a very small dosage of this drug, it makes me feel nauseated and shaky. I must admit, this drug produces waves of discomfort that can steal my patience and concentration for hours. Thus, taking this drug isn’t always worth it, given the side effects. I must look at what I’m supposed to do that day (social interactions and public places) and decide if I prefer nausea and jitters or cataplexy.

Today, I’m looking forward to celebrating a friend’s birthday this evening (happy birthday, Em!) so I’ve chosen this drug (with its side-effects) over cataplexy. Given my current level of discomfort, I don’t feel well enough to run today. Of course, even if I hadn’t taken this drug, I wouldn't have felt safe running with my level of cataplexy. So it was really a lose-lose scenario for running today. Oh well - I’m hoping my medication comes in the mail (as the second blizzard has finally passed) and I’ll be back running tomorrow, with even more vigor.

For now, I’m going to go take a walk with my camera and look into buying some ginger tea (as I hear it works wonders for nausea). I hope I don’t sound like a martyr. As I said, I usually leave the running tally of drugs v. symptoms out of the conversation. However, I’ve decided to be a little more honest for communication purposes only. I do not think I’m the only one who deals with challenges of this nature; I only hope to reveal some of the more subtle nuanced ways that narcolepsy affects my life and my marathon training. Thank you.

Snowmageddon

When I decided to move from Boston to Washington DC, one of the first things everyone said was, "Hot summers in DC... But much milder winters. You'll enjoy that."

When I decided to train for the Boston Marathon, one of the first things everyone said was, "Milder winters in DC... Much easier to run down there. Lucky for you."

As a lifetime New Englander, I'll admit, I thought I'd had my fair share of snow. Although the climate change certainly wasn't the reason I moved south, I was excited for the warmer weather. Before leaving, I chucked my snow-boots into the dumpster behind my apartment in Boston (they were old and I didn't think I'd get much more use of them anyway). Once in DC, I laughed and bragged to my northern friends when it hit 75 degrees in November. I pitied them for not smartening up (like me) and ditching the ice-cold misery of New England. Did I jinx myself? Perhaps.

As you may know, Washington DC received a record-breaking snowstorm in December, a.k.a. "Snowpocalypse." And perhaps you heard about our second record-breaking blizzard this past week, a.k.a. "Snowmageddon."  Now, with two feet of snow on the ground, we're expecting a third storm tomorrow - predicted to bring another foot of friendly flakes to our winter wonderland... (The name of this third storm is T.B.D. - currently the most popular contenders are "Snoverkill" and "Snowfecta.")

Snow-laden DC is beautiful, but not runner-friendly. Without cross-country skis or snow-boots, I've been staying indoors. I'd like to say that I'm so hardcore that I've been running outdoors through it all, but I'm not.  However, I did get suited up in my old running sneaks to get outdoors to take some pictures of DC post-Snowmageddon. Like running and writing, photography is something else I enjoy very much. So, I've decided to make this blog-posting light on words and heavy on visuals. Hope you enjoy!  

A typical street in DC:

A tree down on New Hampshire Ave:

Most businesses closed during Snowmageddon, but not Ben's:

Under the snow - the Dupont Metro escalator:

A lamp-post on New Hampshire Ave:

Meridian Hill Park, peaceful after a 200-person snowball fight:

A Fountain of Snow in Meridian Hill Park:

For now, I'll be indoors training on the treadmill. However, perhaps I'll have some more photos to share after the "Snoverkill."

The Great Rivalry of Boston 2010: The Kenyans v. REM Runner

Like all great rivalries, this one goes way back. I don’t remember why or when it started. Oh wait, yes I do. It began exactly two weeks day ago, on the day I ran 15 miles.

When I left for my run that day, I removed my apartment keys from my keychain and tied them into my shoelaces (so I wouldn’t have to carry the bulk of my keychain). Of course, when I returned from my run, I forgot to re-hook them into my keychain and later locked myself out of my apartment.

Luckily, my doorman, Freddy, is perhaps the most happy-go-lucky person I’ve ever met. IF I ever told him I'd burnt down the building, he’d probably laugh and say, “Uh oh, now what are we going to do about that?”

Freddy couldn’t have been any nicer about my key situation and graciously accompanied me back upstairs with the master-key. However, I felt the need to explain myself to him, hoping to set myself apart from the numb-chucks that lock themselves out for... well, for not-so-good reasons.

“I went for a run and ….” I kept talking to fill the elevator-air but sensed that Freddy wasn’t listening. I realized - he probably gets this a lot.  I blabbered on as we walked the long hallway towards my apartment, telling him that I was training to run my first marathon in April in Boston.

Freddy lit up, “Oh, The Boston Marathon!”

“Yes, well, I’m from Boston so that’s why I’m running that one,” I explained.

“Well, I’m from Kenya, and we usually win your marathon.”

And that’s when the smack-talker in me came out: “Oh yeah? Well not this year… Not with me in the race!”

Unlocking my door, Freddy began laughing deeply from his belly and said, “We’ll see about that.”

“Yes, we’ll see.” Agreeing to disagree, I thanked Freddy and snuck back into my apartment. Closing the door behind me, I could hear him still chuckling down the hall.

For better or worse, I have this overly-confident alter-ego that usually only rears its ugly head during conversations about tennis, squash, and ping-pong. I’m a much more humble runner, as I said in a prior post – I see myself as an average runner (not the gazelle-type). But for some reason, things got out of hand between Freddy and I - words were spoken, and there was no going back now. And just like that, the great rivalry of Boston 2010 was born: the Kenyans versus the REM Runner.

In the last two weeks, the rivalry has been heating up considerably. It’s abundantly clear now that Freddy is working undercover as a spy for my Kenyan rivals, reporting on my training so that they keep up with me – distance and pace.

Last week, I waltzed through the lobby carrying a big box under my arms – a much-needed new pair of running sneaks. Freddy laughed and shook his head when I explained that these were “new shoes to keep up with the Kenyans!” But most likely he was secretly taking note of the brand and model… I wouldn’t be surprised to find all the Kenyans wearing my same baby-blue Asics gels on race day.

However, just yesterday, things began looking good for me. As I left for my 16 mile run, I dropped off a water-bottle and a packet of energy sports beans with Freddy at the front desk. He laughed at me and said, “No chance...No chance.” To be expected. I laughed too.

I ran the hills of Adams Morgan, Cleveland Circle and UDC area. The roads were sloppy – slush and snow leftover from last weekend’s storm. As planned, I ended my first 7 mile loop back at my building, to hydrate and energize mid-run. Entering my building, I was sweaty and sniffley, with flushed rosey cheeks. Freddy handed over my water and jelly beans and much to my surprise, he said, “Now, you look like a runner. Maybe you will run with the Kenyans.”

It was the enemy speaking the unspeakable. Rehydrated and inspired, I set out for the second portion of my run, a 9 mile whirlwind tour around the national mall area. I was anxious to complete this run, for many obvious reasons, including Freddy’s reaction. I wondered what he’d say, seeing how much longer I’d been out running now! Perhaps he’d get all serious and concede the whole race to me, saying something like, “You’re going to beat the Kenyans, aren’t you?” And then we’d break into a thunderous laughter together.

However, by the time I reached home, ragged from my 16 miles, Freddy’s shift was over. The mild-mannered evening doorman, Andrew, returned my water-bottle to me from behind the front desk. We exchange half-hearted smiles; I thanked him and went on my way – hobbling to the elevator.

To Andrew, and to most of the world, I’m just another anonymous runner. No one needs to know how far I’ve run or what I’m running for. Yet, alone in the elevator - I couldn’t help but beam with pride - I just ran 16 miles! Not even Freddy, my greatest marathon “frienemy,” knows the circumstances under which I train as a person with narcolepsy. And it hardly matters what others think at this point.

Two years ago, or even one year ago, if you told me that I’d be on track to running a marathon this spring, I would have laughed and told you you were crazy. Adjusting to life with narcolepsy has been a complicated experience and I must admit, there have been times that I’ve lost sight of myself. Moments when my will-power and self-confidence waivered. During these times, the prospect of running a marathon felt about as likely as the prospect of beating the Kenyans.

Of course, I probably won’t finish within hours of any Kenyans in Boston. But never say never – you may just wake up one day and realize that you’re doing something that you once thought was impossible.