Chasing Fireflies

Everyone talks about the unbearable heat of Washington DC in the summertime, and rightfully so, as it's been so hot recently that I've worked up a sweat just walking to Starbucks for a Frappuccino.  Because of the extreme heat, I haven't been running too often, but if I do, I go out either early in the morning or early in the evening.  Just this evening, I caught a gorgeous sunset over the national mall - the sun was a huge two-toned ball of fire, yellow on top and hot pink on bottom, simmering just above the tree-line.
 
So far, my favorite thing about running this summer in DC is the fireflies.  A few weeks ago, I went running at dusk, and as I ran past the green grass grounds surrounding the White House, I noticed that the grass was shimmering, lit up by tons of tiny greenish-yellow lights. The little lights were everywhere, sparking up out of nowhere and then falling back to darkness - as each one faded, another lit up close by.  My eyes followed from one light to another to another, like a cat chasing a mouse, I couldn't keep up.

Responsible for the light-show were hundreds of fireflies.  I couldn't remember the last time I'd seen a firefly and I'm almost certain I've never seen so many together at one time like this.  Although I'm 26 years old, I couldn't help but smile at the sight of the bedazzled green lawn. There was something eternally youthful and majestic about the scene - it was as if a bed of shooting stars had fallen from the sky and landed in the grass.

A few days later, I went out for another run along the same path and I was surprised once again, to see the abundance of glowing lights emanating from the lawn like a Christmas tree lit up with flashing strings of lights.

On this evening, I noticed two young children running in the lawn, circling around, stopping and starting again, and laughing with pleasure - they were chasing fireflies.  The little boy yelled out, "I caught two, Katie!" and the slightly older girl yelled out, "I got four!"  A father stood on the sidewalk nearby and as I ran by him, I couldn't help but smile awkwardly in his direction (the way I usually openly stare at cute dogs).  Although perfect strangers, I felt very close to this family, perhaps because they brought me back to a time in my youth when I'd chased fireflies. 

Although I'm not training for any races right now, I'm enjoying running very much. Sometimes it's nice to just enjoy the journey without worrying about a particular goal or destination.  And who knows, if you're out and about, you may just run into something unforgettable.

------------------------------------------------------

REMINDER: Keep voting for Narcolepsy's Immunochip Project - less than a week left and we're constantly moving up in rankings - currently 35th! Every vote counts: http://www.refresheverything.com/narcolepsyimmunochipproject

In Retrospect & Call for Submissions

I have a confession to make regarding exercise and narcolepsy. Although I rarely think I'm wrong about much, I must admit I was wrong about something on this blog.

Athletics had always been a huge part of my life, yet I stopped exercising altogether when diagnosed with narcolepsy and cataplexy.  As you know, I reincorporated exercise into my life this past year to run the Boston Marathon for narcolepsy research. Although stubbornly determined to take this challenge on, I originally feared the exercise required to train would negatively affect my narcolepsy. I predicted right here on THIS blog that my daytime sleepiness and my cataplexy would get worse with my running.

I wrote:

"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." (From Decisions Decisions, January 26, 2010)

In retrospect, I was wrong.

In the six months I trained for the marathon, my mind and body felt stronger and more resilient than ever. The long runs did make me tired. After my 16 and 18 mile training runs, I was totally exhausted the next day. Naturally, I blamed narcolepsy, and was surprised that other marathoners, who didn't have narcolepsy, reported similar exhaustion.

Studies suggest that low to moderate exercise reduces fatigue. Originally, I was skeptical of whether this applied to me as a person with narcolepsy, as strenuous exercise often left me exhausted. Low to moderate exercise such as walking, jogging or slow biking seems to be the way to go. 

Not only did the training not negatively affect me, it did the opposite - it positively affected me! Not right away, but after a few months of sticking to it, I discovered new muscles in my arms, legs and stomach I'd never felt before. I felt happier and lighter in my step.  For me, the benefits of this training greatly outweighed any draw-backs. 

Along these same lines: I'm currently writing an article for the Narcolepsy Network Newsletter about different ways that people with narcolepsy have incorporated activity into their lives. If you are a person with narcolepsy and have one or more forms of exercise that you find helpful, please write me at julieflygare@gmail.com. 

Specifically, I'm interested in:
1. How you got started in this exercise/activity
2. What you feel the benefits are for your narcolepsy/life.

(I'd love to get a variety of activities including yoga, pilates, walking, biking, gardening, tennis, any water-sports or team sports!  Thank you in advance for any help with this project.)

---------------------

One more thing: Don't forget to keep voting for Stanford's Pepsi Project everyday at: http://www.refresheverything.com/narcolepsyimmunochipproject . You can vote once a day!

The Exercise-Free Plan to Raise $250,000

I recently ran 26.2 miles to raise money for narcolepsy research, proudly raising over $6,000. However, I am excited to announce a MUCH less physically-demanding way to raise $250,000 towards vital narcolepsy research!

As you may remember, I wrote a blog post about the narcolepsy specialist, Dr. Mignot of Stanford's Center for Narcolepsy and his hopes to participate in the International Immunochip Project (click here to read more about Dr. Mignot and the importance of the Immunochip Project).

Exciting news - this project could possibly be funded through the Pepsi Refresh Everything Contest, if it receives enough votes!

Please consider taking 2 minutes to go to this site, sign in, and vote for this project to receive vital funding:

 http://www.refresheverything.com/narcolepsyimmunochipproject

Throughout my marathon experience, many people said to me, "I could never run a marathon." Understandable -- but now -- you can help narcolepsy research with just a few taps of computer keys every day! 

Why support this project? If able to particpate in the International Immunochip project, esteemed researchers of over 20 autoimmune diseases such as Type 1 diabetes, Multiple Sclerosis, Celiac disease, Lupus, etc. (over 50,000 samples) would compare and contrast the genetic architecture, defining pathways of immune abnormalities. With funding we want to include narcolepsy patient samples in this important collaboration. To have these samples tested will raise narcolepsy knowledge and visibility to the level of other autoimmune diseases that are much better funded and studied. With participation we anticipate this will dramatically increase interest and research in narcolepsy.

I'm going to leave a note for myself next my computer to remind myself to vote for this project every day in June. Consider doing the same! Thank you.