By Ann Austin

At a very simplistic level, I can write the sentence: Narcolepsy is a disorder of the brain. At a complex level, narcolepsy is multi-layered and affects our physical, emotional, and spiritual realms.

The experience of Narcolepsy seems to be about “stages”. There is the stage when we don’t know, the stage of diagnosis, the stage of treatment and the stage of “settling in” –when we figure out our lives as people with narcolepsy.

As someone who is somewhat skeptical of “stage theories”, I know that I went through stages when diagnosed. By the very nature of diagnoses and treatment there are times when we are more focused on medication, on creative napping or on how to communicate with others about this disease with a funny name.

During the first few years after diagnosis, I was “in my head”; preoccupied with how to manage my symptoms, stay employed, and managing meals so that I wouldn’t fall head-first into a full blown mid-day nap. I was in my head so much that I only felt tired in my head! My body rarely felt tired. I rarely felt anything in my body.

In retrospect, my body and brain were utterly disconnected. If I could draw a picture of myself ten years ago, it would be Picasso-esque with my head far off the axis of the rest of my body. Actual photos show a 37 year-old woman, 45 pounds overweight and settled into the gravity of hopelessness and despair. Yes…I can see this by just looking at my pictures.

In 2005, I had the supreme fortune of finding Nia and meeting one of the most eminent Nia Teachers – Robin Bach - who lives and works in my hometown. Robin is a Nia Black Belt – the highest level of practice attainable. She brought Nia to St. Louis over ten years ago and has been the spark to a growing Nia community throughout the St. Louis area.

At the time, I had just been diagnosed with Reynauds, a circulation disorder that affects the hands and feet. So I was disconnecting further - my hands and feet were no longer part of my warm, flowing lifecycle. I was filled with grief and despair. It was Nia that saved me…helped me find joy, serenity, and a grounded sense of self. Those who know me today know that I’m no longer a Picasso!

Nia stands for Neuro Integrative Action. Nia is about getting out of the head in into the body – sensing the body. It is fusion fitness, combining dance arts with healing arts and martial arts. A typical hour of Nia might include a bit of Tai Chi, Aikido, Tai Kwon Do, jazz dance, modern dance, and ballet mixed with some Yoga, Feldenkries, and the Alexander Technique!

Nia is not just a workout. Is it a dance! In Nia, we move in energetic and joyful ways. We play, we punch out our frustrations, we celebrate our power, and we imagine. We move with intention and we breathe deeply. And with each breath, a tiny bit of nitric oxide - which is a proven energy booster - is produced. (Not to be confused with nitrous oxide that puts us to sleep!)

A few years ago, I had a discussion with Dr. Jerry Siegel about the effect of aerobic exercise on reducing narcolepsy symptoms. While he didn’t have scientific proof, he said there was anecdotal evidence to suggest that regular exercise can improve alertness and reduce sleepiness. I add my story to the body of anecdotes that hopefully will be proven scientifically someday.

I “dance” Nia three times a week – religiously. During Nia, I envision my cells bouncing energetically throughout my body. Once I released the negativity from my head and let joy flow into my body, I lost the weight and felt dramatically better – physically and mentally.

Today, Nia is just as important as taking medications and sticking to my sleep schedule. Nia keeps me grounded, content, joyful, and ready to live a full life. I rarely struggle with daytime sleepiness as long as I go to Nia, stick to my sleep schedule, take my medication, and make good food choices.

This past year, at the 2007 Narcolepsy Network Annual Conference, I had the privilege to share my Nia experience. And not only did I share my story; I brought Robin Bach with me!

Skeptics thought, “You’ll never get a room full of sleepy people up and moving.” Even Robin had some trepidation. But, not only did a packed house of conference attendees move, play, laugh and cry together, but they accepted the invitation to get up early – yes, early, the next morning to join Robin for an hour of Nia. And when the hour ended, people wanted more! Can you believe that! People who hadn’t moved in years were clamoring for a website to find a Nia class in their hometown.

Charlie Severson, a young man who has lower back problems touched his toes for the first time in years without a second thought. Later he reveled, "When Robin Bach first introduced my friends and me to Nia, I must admit I was skeptical.  I wondered how any form of exercise could possibly give more energy to a room full of people with narcolepsy, a chronic sleep disorder.  Within minutes, my doubts were gone.  We were up and moving, putting thought and meaning into each and every movement we made.  The next day, Robin had us kick high into the air and touch our toes.  As a person with back problems, I thought I'd never be able to do it.  But with Robin's direction, I was able to forget about what I thought my body couldn't do and instead focus on what it could do.  I was able to kick high and reach low to touch my toes for the first time that I know of in my life!  I took Nia home with me, and although I am not yet in a class, I use the things Robin taught us every day.  Nia enabled me to return to work after a three-month leave of absence, and even though my job is 100% on my feet, my body doesn't hurt as much anymore simply because I've learned to stop doing things that make it hurt and focus on what makes it feel good.  Thanks Robin!"

So, can the mind’s eye – the mind’s formation of reality - cause us to think our way into feeling worse or better? Can the movement of our body affect how our brain functions? Looking back at my Picasso days, I would have to say that my mind was a major factor preventing me from believing in my body as strong and viable. And now, conversely, it is my body that bears witness to my brain, showing me how much strength, stamina, and energy I have.

If you want to experience Nia, I invite you to go to www.nianow.com and find a class near you. In most cases, your first Nia class is free. Robin Bach also travels around the country, bringing Nia to other groups who want to learn about healing through movement.

And finally, my personal story and journey to Nia, can be found on the St. Louis Nia website at www.niastlouis.com/AnnAustin.htm

From the Author: This column is devoted to exploring holistic strategies to compliment the treatment we receive from our physicians and other health care providers. As with any treatment, it is recommended that you discuss your ideas and desires with your physician or health care provider to establish an integrative treatment plan.