What does NARCOLEPSY: NOT ALONE mean to you?

by julie on August 27, 2014

Narcolepsy- Not AloneWhat resonates with you? I created this word-collage using popular words from NARCOLEPSY: NOT ALONE campaign blog posts.

For me, the words “connect”, “badass” and “tears” stand out. I love that positive and negative experiences are captured here. No matter where you are on your journey, your feelings are valid and normal, its all part of  the narcolepsy roller-coaster. I believe Alanna may have said it best in her Dear Diagnosis letter: photo (1) Thank you for making this campaign so successful and meaningful!

View NARCOLEPSY: NOT ALONE gallery:

Screen shot 2013-12-31 at 1.21.53 PM

{ 3 comments… read them below or add one }

William S Johnson August 27, 2014 at 10:31 pm

Julie is such a refreshing breath of fresh air that she brings tears to my eyes. She is an answer to so many prayers, and so long in coming. Who can understand a PWN but another PWN? But being a PWN and wanting people to understand does not mean wish Narcolepsy or any of its tetrad of symptoms upon them. Just yesterday, I was wearing my “Narcolepsy not alone” tee shirt around the house. When I answered the door for political pollsters which usually result in my falling back inside the house from Cataplexy, I recognized the candidate’s name and affirmed I would vote for him citing from long term memory how I knew him realizing the man at the street would know but the person at the door was probably ten years too young to know… the good feeling of being able to have a rare conversation knowing my long-term memory wasn’t completely gone and the realization that if I did not shut up, I would trigger Cataplexy. As I was speaking, I observed a change in the persons demeanor, which was not rude, but a little curious, and left me feeling questionably slightly unsettled. Had I done something, said something troubling to the individual that I was unaware? Later in the evening, it struck me. It was the tee shirt I was wearing: NARCOLEPSY NOT ALONE! The shirt had made a statement that had resonated with the individual and I had not made the condition. Perhaps a teachable moment lost. What “Narcolepsy Not Alone” means to me at this juncture is that we FINALLY, Finally, finally, through this wonderful person Julie Flygare not only have a longly needed voice to articulate our cause, but she has given us a Voice, permission to be ourselves, to shout out if we so desire, that we will no longer accept demeaning jokes, inaccurate portrayals, textbook stereotypes making us all the same as if God cut us out with a cookie cutter, that with the efforts of Social Media we will no longer stand by singularly to repudiate junk scientific articles about our condition, we will not be bullied or disenfranchised in the work or disAbility arena, and we want medicine that works, in the interim for the CURE that we all await. If I could only add one word to the above collage that I do not see, it would be the word “VOICE.” Thank you Julie.

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William S Johnson August 27, 2014 at 10:37 pm

wish=wishing, third line
condition=connection, line 15

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Sylvia Bicki October 8, 2014 at 4:17 pm

She Slumbers

Where does she wander
within her sanctuary
through her indigo slumber
This serene sleeping beauty’s
refuge from worldly cares
Days wait too late
bringing darkness to bear
those lonely hours
those long, long silent hours
As the world sleeps
then rises to rush past
I stand fast, wait, sigh, weep
My sweet nightingale slumbers

This is a mother’s (me) sad poem of lament . My 15 year old daughter has narcolepsy. Although her dad and I do advocate for her education with her school, it is so much more than that. The social aspect can be pretty lonely. As a parent you want the best life for your child. The poem is sad, but now I can be happy there is someone (Julie!) representing those with narcolepsy and educating others about it. We did feel pretty much alone until we became aware of you, Julie, and how you have become such an important advocate for us all. Thank you

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