|Julie and Gail – Sleep Walk 2011
On Saturday, Julie reminded me to set my clocks ahead one hour. When I woke up on Sunday and checked my cellphone, I noticed the time. Uh oh! I thought I had changed the alarm and time. Already 9:30 AM, I dressed quickly in layers and drove along the George Washington Memorial Parkway marveling at the cloudless cerulean blue sky.
I had some trouble finding a parking spot, but eventually parked and arrived on foot at the bandstand by the Washington Monument, feeling guilty to be late. I do not have Narcolepsy yet I overslept. Julie sat on the bandstand holding blue and silver balloons. She wore the royal blue T-shirt she had designed for the Sleep Walk saying “Hello, I have Narcolepsy” in big letters. She sported sparkling star-shaped sunglasses and flashed me a great big smile as I approached.
After a big hug and kiss, Julie gave me the t-shirt she had designed for me saying, “My friend has Narcolepsy.” I took off my jacket and proudly put the t-shirt on over my hooded zip-up velvet jacket. I was honored to have this special t-shirt.
I met the rest of the group and we started our walk. We headed toward the Capitol building and were embraced by the St. Patrick’s Day parade bands and floats waiting to join the procession down Constitution Ave. One of the bands played the theme song from the Rocky movie. We walked with strength and energy. I took photos of our group and asked some kind tourists to take our group’s photo. They were happy to oblige but did not ask us about our walk or t-shirts.
Onward we walked toward the Capitol. In front of the Museum of Natural History, we turned around to head back toward the Washington Monument again.
There was a group of teenagers waiting to cross the street with us.
One curious boy read one sleep-walker’s buttons, “Kiss me, I have…” He paused, “Narcolepsy?”
I thought. Someone is noticing us.
I answered, “Yes, Narcolepsy is a sleep disorder that makes you tired after 4 hours like you were awake 48 hours.”
“Wow!” he responded, as he turned and walked away with his friends as the walk signal changed. Hearing myself say this, it hit me again why Julie is so exhausted sometimes.
Returning back at the bandstand, we opened our blue cellophane goody bags and played like little kids with a paddle balls, yo-yos, and my favorite – bubbles.
We took a few more pictures and parted ways with hugs. Julie went home to nap. I walked back toward the National Gallery of Art to see the new Gauguin painting exhibit. I walked up the stairs of the West Wing with the tune of Rocky still in my head , I felt light and energetic. As I entered the museum my eyes adjusted to the seeming absence of bright sunlight except the dusty sun-rays. I was greeted by three guards at the bag examining table. I opened my bag to show the contents revealing my goodie bag with bubbles and candy.
The youngest guard looked at me seriously and said, “What is Narcolepsy?”
|Gail blowing bubbles
“It is a sleep disorder of the brain that changes your sleep patterns. A person with Narcolepsy gets really tired after about 4 hours like they’ve been awake for 48 hours. There is no cure yet and they need to take naps and rest more than the average person. My friend Julie has Narcolepsy and we just had our first walk to raise awareness.”
“I didn’t know that,” he replied.
“Most people don’t which is why I am wearing this T-shirt. I am glad you asked me.”
“Thanks for explaining it to me.” he said. “I learned something new today. Please put your backpack on one shoulder not your back. Some people take paintings and hide them in their backpacks.”
“OK. My pleasure.” I said and asked directions to the Gauguin exhibit.
I walked towards the exhibit – going up and down stairways and continuing to walk with a bounce in my step. I stopped in the ladies’ room before entering the Gauguin exhibit. There was a line and I stood patiently.
A grey haired woman wearing a lavender wool dress looked at my shirt and asked, ”Dear, what is Narcolepsy?”
I replied, “It is an auto immune disease in the brain that causes a sleeping disorder often misunderstood or undiagnosed. It causes perpetual sleepiness like you have not slept for 48 hours after only 4 hours. Some people also have cataplexy where they lose control of their muscles with emotions like laughing, loving, or sadness. They can hear what is going on around them but cannot move or control their body.”
“I am so sorry your friend has this,” she said with wide eyes and a sweet smile.
I thanked her for asking then entered the stall. I was getting really warm so I removed my new “My friend has Narcolepsy” shirt then the hooded jacket and left on my plain black t-shirt. I folded them neatly and forced them into my small backpack. I could put away the t-shirt just like the disorder could be hidden from the public.
I plan to wear my Sleep Walk t-shirt when I go on walks as the weather gets nicer and hope to have many more conversations about narcolepsy.
I think of my friends with chronic illnesses and how motivated they are to raise awareness and provide support to others. I am truly inspired by them daily. They have enriched my life with their intelligence, friendship and talents. I hope in my lifetime together we can find a cure for Narcolepsy, MS and Breast Cancer. My dearest friends have been afflicted with these hardships but fight them daily with courage, laughter and determination to make it easier for those that are diagnosed daily. My world is enlightened and has more depth and meaning with their friendship. I cherish each day with them.
I look forward to walking with Julie and hundreds of other Sleep Walkers next year.