Off the Ground and Running

Columns of buttery yellow sunshine spread across a crystal blue sky. A few fluffy white clouds drifted aimlessly above. As I ran long the Potomac River at sunset yesterday, I found something I hadn't realized I'd been missing. 

Recently, my life changed dramatically.  At the beginning of September, within one week, I started a new job working full-time and moved apartments to a whole new area of DC.  I am a creature of habit; I hate change. I'm one of those people that finds one path I like and runs it over and over without mixing it up or exploring new grounds. Change is difficult for me, so although I actually love my new job and apartment, I've been feeling very "lost" recently - both literally and figuratively.

With all this change - I hadn't been running in a while. How could I go running - I wouldn't know where to go?! Nonetheless, yesterday morning, I packed an extra bag for work - my running shoes and gear.  There had been talk of me possibly running next year's Boston Marathon with Wake Up Narcolepsy.  I didn't know if Wake Up Narcolepsy would be able to secure official bib numbers for the marathon yet, but I thought I better get started on some preliminary training. If we did get the bibs, I didn't want to start training cold-turkey. I wanted to ease my way into back into the routine and for some odd reason, yesterday struck me as the day to start.

In preparation, I mapped out my route quickly using google maps, as I'd never run in any of this area before. Luckily, I now have a "smart phone" with mapping GPS capabilities, so I wasn't worried about getting too lost. So long as I had my phone, I would be okay, I told myself.   After work, I changed into my running clothes and set out towards the Lincoln Memorial to run home.     

Just a few minutes into my run, I crossed the Arlington Memorial Bridge into Virginia and ran along the waterside paths towards my new home. The sunlight was surreal, like something out of a movie-set. I don't consider myself a religious person, but if I did, I would think God was personally reaching out to me from the sun's rays. I wished I had brought my camera with me, but then quickly remembered that my new phone also has a camera feature! I stopped many times along the way to walk and take photos.

As I ran closer and closer to Reagan Airport, airplanes began dipping very low above my head, a few sinking so low that I instinctively found myself physically "ducking" in reaction to their wake. The lion's roar of their engines invigorated me with life. I couldn't stop smiling to myself.  The accompanying sunset and waterfront view of DC was overwhelmingly beautiful. And then it hit me, "This is my favorite place."

I've lived in DC for just over a year now, and just yesterday, I found my favorite place. In Boston, there was a particular spot along the Cambridge side of the Charles River with a beautiful view back of the skyscrapers - this was my Boston "spot," which I made a point of running past on almost every run for four years.

I hadn't realized I'd been missing a favorite place until I found it yesterday. Here I was in a totally foreign area of DC - forced here by circumstance of my new job and new apartment -and for the first time, I felt like I belonged. I tried taking a picture to capture the moment. When I got home (much later, as I'll describe in my next blog post), I got word from Wake Up Narcolepsy founder, Kevin Cosgrove, that we received Boston Marathon 2011 bibs, making yesterday's run my first official training run for the Boston Marathon 2011!!
Looking back at my photograph from the base of the airport, I can't think of anything to better capture my euphoric joy and hope for the future.

In closing, there is one small moral of this story:  if you don't consider yourself a runner today, start tomorrow. Don't think, just run.  Don't consider your body's limitations. Don't think about how tired you feel. Don't think at all, just leave. Get up and get out. Run until you're tired, even if it's just 2 minutes. And then walk. Walk until you feel rested, and then run again.  

Yesterday, I realized that evil "change" may be a good thing sometimes. I'd been feeling down recently, and I never imagined that one simple jog could change all that but it did. When you least expect it, you may run into something unforgettable.

During the Off-Season: REMRunner Visits the National Institutes of Health

The room was silent. The portable microphone was ice-cold in the grip of my sweaty hot palm. Balanced against my left arm was my sheet of talking points. I wasn’t nervous about what I would say - I’d drafted my speech the night before. Plus, these words didn’t need to be memorized – they were deep in my heart.

REMRunner Outside NIH's Campus

About 30 people dressed in formal suits piled around a large conference table. Another 20 individuals sat around the edges of the room, myself included. I was visiting the National Institutes of Health (NIH) for the day. A few hours earlier, at 8:15am, I received my Visitor’s Pass to enter the NIH Campus. A security guard pointed me towards the appropriate conference center. I’d walked with my head held high along the well-manicured path towards the building. I wore my favorite formal skirt suit and shiny leather shoes.

I was at NIH representing Wake Up Narcolepsy in a public meeting of the NIH’s Sleep Disorder Research Advisory Board (SDRAB). The Board was meeting on this day, Friday August 27th, to discuss the future of sleep research and set a plan of priorities for sleep and circadian rhythm research for the next five years. Earlier in the summer, the Board issued a Request For Information to researchers, stakeholders, patient organizations and other interested parties asking for input.

Wake Up Narcolepsy sent a response detailing what our organization believes are important priorities for the advancement of sleep research in the upcoming years. Now, just a few months later, I sat in a formal boardroom with prominent sleep researchers and NIH representatives. After a few hours of introductions, questions and presentations, it was almost time for lunch. Everyone was ready to break, having been sedentary for hours already. Yet, before lunch, the “Public Comments” section of the schedule arrived. This was my opportunity to speak.

I rose from my seat, took a deep breath and began speaking into the microphone. I explained that I was there on behalf of Wake Up Narcolepsy(WUN), a non-profit organization founded in 2008 to raise awareness about narcolepsy and raise funds for narcolepsy research. I proudly spoke about WUN’s golf outings and Boston Marathon fundraising efforts. I detailed where Wake Up Narcolepsy’s funds had gone to date – including grants to Stanford’s Center for Narcolepsy, narcolepsy research at Harvard Medical School and to the national patient organization, Narcolepsy Network.

I finished by emphasizing Wake Up Narcolepsy’s sense of urgency in funding narcolepsy research. I highlighted a few possible “priority” areas for the future of narcolepsy research, including the research currently taking place at Stanford exploring the possible autoimmune connection to narcolepsy. I explained that this research is currently being funded entirely by private resources, including funds from WUN. In closing, I encouraged the Board to make narcolepsy an important area of focus for NIH sleep research in the next five years, emphasizing that narcolepsy research will likely lead to advancements in other areas such as insomnia, obesity, autism, schizophrenia, and bipolar disorder.

In giving these few remarks, I never once looked at my notes. Instead, I looked into the eyes of the individuals around the table, all of whom listened intently. I successfully delivered my message.

Multiple individuals approached me during the lunch break to ask me more about my experience with narcolepsy and running the marathon! In the afternoon session, the Board began to outline the goals of their Research Plan for the next five years. The Board will continue to work on this in the coming months and I look forward to seeing their final product. By spending the day at their public meeting, it became very clear to me that these individuals care deeply about sleep disorder research and the people affected by these conditions.

This was a very special day for me. I stood proudly, as a person with narcolepsy and as a patient advocate. It was an honor to represent Wake Up Narcolepsy before the NIH’s Sleep Disorder Research Advisory Board. A special thanks to Patricia Higgins, President of the Narcolepsy Network's Board of Trustees. Tricia has been a role model and dear friend over the last couple years and she was sitting at my side this entire day. When it came time for me to speak, she encouraged and calmed me. Her support means the world to me.

I look forward to continuing my work here in the Washington DC area to spread awareness about narcolepsy and advocate for funding of vital narcolepsy research. In just a few weeks, on Friday October 8th, I will be participating in the Narcolepsy Network’s Advocacy Day on Capitol Hill.

If you’d like more information about my advocacy efforts or would like to get involved, feel free to contact me.