Posts Tagged ‘sleep memoir’
Flygirl Takes On Flying Trapeze Despite Cataplexy
“Right hand on bar, toes over edge, left hand on bar… Left hand… Julie?” I am 23 feet above ground, on a small platform with the friendly trapeze man, Chad, pulling my harness/corset backward as I lean forward over the edge. Below – a net and a few miniature smiling faces. I’m supposed to…
Read MoreMemoir Milestones – Finishing My Book
After graduating from law school, I set out on a raft into the ocean… Or close enough, I set out to write a memoir. I wanted to open people’s hearts to narcolepsy. I’d studied the challenges facing people with narcolepsy while in law school – laws, regulations, policies, procedures, politics. I felt that a…
Read MorePeople Who Inspire Me: High School Students and Neuroscientists
Today, my inspiration comes from Boston and North Carolina. In Boston, a female neuroscientist, Nancy is training to run the Boston Marathon for Wake Up Narcolepsy. She researches sleep-disordered breathing, but she’s become aware of narcolepsy. Nancy states: “Patients are the reason we as scientists go to work every day… I have run a few marathons before,…
Read MoreIn My Father’s Footsteps: Trying to Find Registration for Mt Washington Road Race to run in my father’s honor on Father’s Day for charity
What do you do on Father’s Day the year your father dies? I’m 28 years old, and 40 years ago this Father’s day, my father was 28 years old, and he ran the Mount Washington Road Race. The Mount Washington Road Race is 7.6 miles uphill race to the summit of Mt. Washington climbing more than…
Read MoreClimbing onto the Tightrope
“Life should be lived on the edge of life. You have to exercise rebellion: to refuse to tape yourself to rules, to refuse your own success, to refuse to repeat yourself, to see every day, every year, every idea as a true challenge – and then you are going to live your life on a…
Read MoreSLEEP WALK 2012 Video
Yes, we got our groove on during SLEEP WALK 2012! Check it out: Thank you, Ethan Crawford for creating this awesome video! Thank you, Suzworks‘ Suzannah Weiss and Sue Dambrauskas for getting the party started with Nia. More fun videos here. More about Wake Up Narcolepsy here.
Read MoreWhen Dreams Come True – SLEEP WALK 2012
The week of SLEEP WALK 2012, I checked the weather obsessively like a bridezilla awaiting her wedding day. Hosting a “rain or shine” event outdoors in March is precarious. It could snow; it could be summer. Arriving at the National Mall early Saturday morning – the sun was shining brightly, not a cloud in…
Read MoreNews Alert: New York Times Features Narcolepsy
The New York Times has a wonderful article about narcolepsy, as told through a high school student’s experience with the disorder. This is great awareness during National Sleep Awareness Week! Read: Too Often, Doctors Overlook Narcolepsy by Jane E. Brody (New York Times, March 5, 2012)
Read MoreBring It On! We have Sleep Spirit – DO YOU?
Grab your glitter glue, bedazzlers, ribbons, and stickers – it’s time to make creative sleep/dream themed signage for the second annual SLEEP WALK (Saturday March 10, 2012 at 9am on the National Mall). My close friend and Nia instructor Sue hosted an informal sign-making party this past Sunday with myself, Sze-Ping and Kerry. It was…
Read MoreHappy Sleep Week!
I’m so excited National Sleep Awareness Week is here (March 4-11th)! In preparation, I attended two sleep-related events last week on behalf of Wake Up Narcolepsy (WUN). NSART:On Thursday, I represented WUN at the National Sleep Awareness Roundtable (NSART). This was my second year attending this meeting. NSART is a national coalition of government, professional, voluntary,…
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