A Snoozy Halloween

While most jackolanterns are busy making crazy/scary faces, my jackolantern is catching some ZZZs.

Wishing you a Happy and Restful Halloween,
REM Runner

Presenting Mr. Punk N. Snooze, my sleeping pumpkin wearing a nightcap.

Riding the Waves of Sleepiness

There were no seats - the Metro was crowded. I grabbed hold of  a metal bar for balance. As the train jerked into motion, my legs wobbled in the undertow of the train's push forward. Weakness set in.

My joints began to ache and a wave of nausea washed over me. I shrugged my shoulders and stretched my neck from side to side - trying to dislodge the discomfort swelling inside. I know this feeling all too well - it was the beginning of something much bigger; it was the first step into the spiral of sleep.

I looked myself over in the reflective dark Metro window. My blue collared shirt was still neatly tucked into my black pencil-lined work skirt. My long brown hair fell against my shoulders as I like it. Everything looked perfect on the outside, yet when I looked directly into my big brown eyes, I knew their pain.

It was just past 7pm and I only needed to make it six stops on the Metro.  Thankfully, trying to keep my balance kept my mind from falling into the gutter. The stops rushed by; I swam in a sea of doors opening and closing, announcements being made, people coming and going.

Finally, my stop arrived.  Yet, as I exited the train, I couldn't recall why I thought this was my stop. Had I heard an announcement? I frantically scanned the waffled cement walls for a sign indicating the name of the station.

"Good, right station," I said to myself, "Now keep moving forward!" 

Here in the depths of the dark concrete cave of the Metro's underworld, I was losing touch with myself rapidly. Thoughts and images slipped through intellectual quick-sand. I kept pausing - unsure of where I was going.   "You're in the Metro Station, Julie," I reminded myself, re-joining the swarm of passengers exiting in mass.

"Just...Keep... Going..."

 

I don't remember swiping my Metro card to exit. I don't remember the escalator ride up to Earth's surface, but this all must have happened because I soon found myself standing outside the Metro station, starring at the line of buses parked along the side-walk. My bus was parked at it's designated spot. This was lucky, as my bus comes about once every 30 minutes. I continued forward, like a zombie, onto the bus.

Thankfully, there were plenty of open seats. I joyously flung myself into the embrace of a bright blue shiny plastic chair, like an angel falling into a soft cloud. The bus driver stood just outside the bus, chatting with a co-worker. That's the last thing I remember thinking before my head abandoned me.

Next, came a black spot in time - a silence - a disappearance in my mind. At some point, the bus driver started the bus. I remember the engine revving up. I remember thinking, "I need to wake up before my stop, but not right now..."

I think this crossed my mind. I think I heard a few stops go by...

A few minutes later, I opened my eyes and saw a plush green recreational field with people playing soccer under bright lights. It was a beautiful scene - green grass and people enjoying themselves. I closed my eyes again. I held no control over this, I was sucked back in a vacuum. There was no fighting it. My head rushed back into darkness.

When I opened my eyes next, I saw children - four of them. They rushed down the center aisle of the bus quickly. At the front of the bus, their mother stood with a baby stroller. "Find seats!" she said to them. The four young children looked around frantically - there were seats, but none together. They would need to split up.

Still very sleepy, I reacted slowly, asking myself, "Should I stand and let them sit in my seat so they can sit together?" I didn't take action, as my eyes closed their windows on me again.

 "Just sit somewhere!" the mother yelled out sternly. The children quickly split up and all sat next to random strangers.

"I should've given them my seat," I thought, "my stop is coming up soon anyway..."

And then, I looked outside the bus. It was dark, so I couldn't easily make out the streets and houses. "Where am I?" I thought.

The bus' automated female voice, as if hearing my question, quickly answered back, "47B. To Farragut."

Farragut? This isn't my bus!  And at that second, we passed by a grocery store, which also was not on my bus route. I leaned forward and tugged at the yellow "Stop Requested" cord. Two blocks further down the road, the bus rolled to a stop, and I exited onto a dark unfamiliar street corner.

There were plenty of people and cars around. I didn't feel unsafe, I mostly felt ashamed and annoyed with myself.  A sleep attack had come at a very bad time, and as a result, I got on the wrong bus and ended up in unfamiliar territory. 

Thankfully, I recently upgraded to a "smart phone" so I used the navigational feature to find myself. I was about 3/4 mile down the road from where the bus started.  I followed my phone's map back to where I'd begun and waited for the correct bus.

I made it home safely, even if it took me about an hour longer.  Could my sleep attack have put me in danger? Perhaps. I do my best to be careful and conscientious, but I am not perfect. Narcolepsy continues to challenge me in many ways.  I may appear "perfectly fine" on the outside, yet there is a lot going on below the surface.

The Wizard of Narcolepsy

Surely I'd set myself up for disappointment. There was no way anyone could live up to the image I'd created in my head. Like the Wizard of Oz, this Wizard of Narcolepsy was sure to disappoint.

I sat in a cushy red and gold chair, facing the front of the ballroom, along with about 200 conference attendees. At the front of the room, behind a podium, stood a lean man dressed in a formal European style suit. His face glowed blue in the light of the computer screen facing him. There was a prolonged moment of silence as he clicked the computer keys to begin his slide presentation. So, this was him... 

Saturday morning of the Narcolepsy Network conference began with a Keynote Presentation by preeminent narcolepsy researcher, Dr. Emmanuel Mignot of Stanford's Center for Narcolepsy.

A 2007 New York Times article described:

"Dr. Mignot is optimistic about cracking the immune-system connection in narcolepsy soon. 'I don’t care actually even if it’s going to take a long time,' he said. 'I’m ready to cross deserts.'

Dr. Tononi said Dr. Mignot was ideally suited for that, adding: 'This is what is good about Mignot. He is relentless.'" (full article here)

I never forgot this description of a relentless scientist ready to cross deserts for narcolepsy.

  

Towards the end of his presentation, Dr. Mignot discussed one of his current projects called the Immunochip Project. He explained that this line of research should help identify what is causing the autoimmune attack in the brains of people who develop narcolepsy.

As he spoke about this project - my throat automatically clenched and my eyes filled with tears. Dr. Mignot's voice fell away; the slides, the red and gold chairs, the chandeliers, the entire ballroom.  Everything disappeared for a moment, as I acknowledged to myself, "I am partially responsible for this. My marathon fundraising efforts helped make this research possible."

For a while, it was unsure if Dr. Mignot would be able to pursue his Immunochip project as he did not receive the funding he had originally hoped for from the National Institutes of Health (NIH). When Wake Up Narcolepsy learned of this urgent matter, WUN founder Kevin Cosgrove vowed to do everything possible to help move this important project forward.

Subsequently, WUN donated $25,000 to Stanford's Center for narcolepsy, combining with a few other private funding sources, to total $100,000 which allowed the Immunochip project to move forward at a minimal level (although more funding is still needed).

Hearing Dr. Mignot discuss this project before a room full of people was a moving experience. It made the whole "I'm running a marathon to raise money for narcolepsy research" very real. Sure, there have been other markers of success. On marathon day - I received a yellow and blue medal and a silver cape. Since then, I've received an overwhelming abundance of congratulations and praise from many people. Yet, at 9am this past Saturday, I received the greatest prize of all - in the unlikely form of a PowerPoint slide presentation.

Later that day, I got a chance to meet Dr. Mignot.  Strangely, this Wizard of Narcolepsy was everything I imagined and more. He has his feet on the ground and his eyes set on the stars. The thing that amazed me the most about Dr. Mignot wasn't part of his presentation at all.

Over the course of the day, I noticed that Dr. Mignot was approached by many people in the hallways, side-tracking him from where he was going. Yet, he treated every single person with dignity and respect.  He was never too busy or too important. He looked each individual in the eye and listened.  

Dr. Mignot is an integral part of our narcolepsy community and I look forward to reporting back as his current research continues towards cracking the autoimmune connection.

Check back soon for more updates about the rest of the Narcolepsy Network conference!

REMRunning Capitol Hill

On a sunny warm October day, I slowly ascended the white marble steps of the Rayburn House Office Building at 1:30pm. I clutched my briefcase tightly. These were my first steps towards advocating for greater awareness and research funding for narcolepsy on Capitol Hill.

After passing though security, I looked to my right and left. In both directions, expansive hallways of white marble extended in both directions. A small plaque directed me to the elevator to reach my Representative's office on the Second Floor.

Once inside the office, I met with the health staff member for my Congressman in plush leather chairs. She was upbeat and I instantly felt calm around her.

She opened, "Narcolepsy has to do with sleepiness, right?"

This was my cue - a cue I'd practiced many times.  I explained that narcolepsy began stealing my knees from me in moments of laughter and eventually led to full-body collapse/muscle paralysis. I explained that narcolepsy is much more complicated than "sleepiness," and I believe this health care staffer took my message to heart.  My voice never trembled; my words danced off the tip of my tongue with ease.  In conclusion, this staff member suggested tangible ways her office may be able to help us increase awareness in the future.

Descending the steps of Rayburn, I felt like I was walking on water. This visit was a successful and empowering experience.

Later that evening, I helped lead a training session of about 40 people who came to the Narcolepsy Network conference early to participate in our official Advocacy Day on Capitol Hill 2010.

On Friday, I returned to Capitol Hill again, only this time, I wasn't alone.  My fellow patient advocates were spread throughout the Capitol Hill complex of House and Senate office buildings, spreading awareness and advocating for narcolepsy research. The day was overwhelmingly successful.  This was just the beginning, yet I believed more than ever that my dreams of improving the lives of people with narcolepsy will be realized.

A big THANK YOU to all those that prepared for and participated in this event. Each and every contribution was invaluable.  

Note: If you'd like to get involved in advocating for narcolepsy in the future, please contact me at: julieflygare@gmail.com. It's certainly not too late to get involved. We're just getting started!

Check back soon for an update about the Narcolepsy Network National Conference...

From Heartbreak Hill to Capitol Hill

Photography by Julie Flygare: http://www.julieflygarephotography.com/



In Boston, I took on Heartbreak Hill. In Washington DC, I'm taking on Capitol Hill!

Tomorrow, I will be visiting my Congressman as part of Narcolepsy Network's Advocacy Day on Capitol Hill.  To see the official Press Release, click here!

Over the last year, I've talked about my narcolepsy A  LOT - telling anyone who is kind enough to listen. Yet tomorrow's meeting still intimidates me. Will I get my point across? Will my medication make me shake?

When I ran the Boston Marathon, I couldn't control the outcome. Much like the marathon, I don't know how tomorrow's challenge will go. Yet, I've prepared myself like any athlete.

I've practiced communicating about my narcolepsy hundreds of times this past year - in bars, at parties, on the bus. I've explained narcolepsy to close friends and perfect strangers. I have my outfit picked out. I have my talking points and statistics memorized.

I must trust my instinct and experience will carry me. I must believe that when the time comes (2pm on the dot), I will rise to the occassion and bring my A game.

I will be sure to report back here afterwards!
Until then,
REMRunner

To read how the Advocacy Day went, click here.

Superman Saves My Day

You never know where a run will take you. In the case of my first training run, I didn't expect to end up in the parking lot of a Best Western Hotel, a sweaty mess, waving down my roommate.

The first half of the run was euphoric (as detailed in my last blog post).  I ran past marble monuments, along grassy trails, into a pink sunset.  However, I was so taken by the new scenery that I lost all concept of how long I'd been running...

Earlier in the day, I'd quickly mapped my route online. I hadn't measured the distance, I just figured it was about 4 or 5 miles. No sweat.

After passing by Reagan Airport, the beautiful sunset turned to dusk.  I began feeling stiff and the tendinitis in my knees was inflamed. I checked on my "smart phone" to see where exactly I was along my route. "How much further?!" I thought.

I still had quite a ways to go... It was getting dark quickly and this was my first time on these paths. Although the paths were still busy with bikers, runners and walkers, I started to get slightly nervous about whether I would make it back to my new house by dark.  On weary legs, I ran faster.

The idyllic scenery turned sour. I passed by a water treatment plant. I crossed under heavy duty power-lines. My breathing was heavy, so I stopped to walk and check my location on my phone again... I wasn't close to home.

One of my roommates was cooking a "family dinner" for all of us that evening. I was in charge of dessert. I'd baked the carrot cake (my mom's world-famous best-carrot-cake-ever recipe) the night before, but still needed to frost it. I texted my roommates to tell them I was going to be home a little late, that my run was taking longer than I expected, and to go ahead and start eating without me.

"Okay," my roommate texted back, "but we're in no hurry to eat. Do you want us to come pick you up?"

Pick me up?! Her offer was sweet, but was she serious? I was out getting exercise. I didn't need a chauffeur.  I texted back, "No thank you. See you soon!" and returned to running/sprinting.

About 30 seconds later, I realized this was ridiculous.  It would be dark in a half hour to an hour. Much to my own surprise, I needed saving. I called my roommates and politely asked if someone could come get me. I found a good spot for us to meet - a Best Western Hotel.

"Wait for me in the lobby!" said my other roommate, as she hurried out the door to come get me.  

Ten minutes later, I heard a car honk. There was my roommate waving and smiling, as she pulled into the parking lot. Totally soaked in sweat, I reclined into her nice air-conditioned car and we sped off back home.  She insisted we stop at 7-Eleven for Gatorade. I bought 5 Gatorade bottles and chugged them all by bedtime.

I showered quickly and sat down for a delicious pasta dinner with my new "family" of roommates. Between my two roommates that night - they saved and fed me. I am very luck to have them. Sometimes Superman doesn't come in a spandex suit and a cape. Sometimes Superman is two good friends, looking out for you when you've lost your way.

Later, I mapped my route and calculated the distance (something I should have done before instead of after). By the time I reached the Best Western, I'd already run 7 miles. If I'd attempted to run the rest of the way home, it would have been over 12 miles total.

This was a low moment for me - standing in the Best Western parking lot getting into my roommate's car because I couldn't run the rest of the way home. But it was certainly the safe and right decision to admit defeat.  In the future, I promise to be much more careful and conscientious about my routes, distances, and timing.