A photo posted by Rachel Nesmith (@sleepyamericanhero) on
My superhero Narcolepsy Advocates and I stand up to the Media's Inacceptable Portrayal of Narcolepsy Out of Love for the 1500 Undiagnosed, Newly Diagnosed, as well as Vulnerable Persons With Narcolepsy in the USA. The navy seal advocates I belong to got the Narcolepsy Network community and organization to realize this opportunity. The opportunity to re-educate the world. we hate terrible stereotypes, we must change this so that no more young folks onsetting and oblivious to why they cannot remain upright or standing with laughter, or why they experience alien attacks and abduction, torture by ISIS thinking they are going nuts when in reality its the always abandoned on narcolepsy media puns cataplexy, sp, and HH. We were not boo hoo hurt by CaptainREMmer's comments, but annoyed that this is still going on. At least my approach is to inspire empathy with snarky humor and transformative analogies(Inception on Elm St). This movement is not just to re-educate mainstream America, but more importantly help people whom fail to associate Cataplexy, sp, hh as symptoms of narcolepsy. They blow off there EDS as sleep deprivation, exhaustion from school,work ,denial,etc. I was so lost and confused re cataplexy in 2001. For a full two months after realizing I had a sleep paralysis major problem and experiencing my knees giving at laughter.... I was terrified and ignorant, searching online for answers until I came across the definition of cataplexy and that its exclusive of narcolepsy on a sleep paralysis site. I honestly don't need an apology, just the media to get our wake up call. My tweet helped NN realize what was going on. I love our Advocacy Team -SpecialOpps: Sharon Denise Remo Stu Carpenter Michelle Hernandez Viv M. Reese especially worked hard to get this done. Sleepy American is my real online name, and I live for advocacy and empathetic re-education. They are always looking out for all of us. It's not out about being hurt or super angry, it is About Time mainstream media Did Narcolepsy Right!
The Tweet which alerted Narcolepsy Network to Respond #narcolepsyisnotasuperpower
For me its what the world sees in real life as experience narcolepsy vs the crazy paralysis symptoms...and hallucinations shown in the mirror.