Friday, May 13, 2016

Real Superheros with Narcolepsy

As Sleepy American, apart from re-educating the mainstream with co-advocates, I use my EMPATHIZER to not only project symptoms of Narcolepsy like cataplexy induced extended sleep paralysis, but also all other invisible chronic illnesses. Or so the fantasy goes... We have to find humor and ways, as well as opportunities to start the conversation, such as Mr.Jeremy Renner's comments. REAL Narcolepsy is NOT spontaneous fairytale naps- more like being waterboarded on Inception Living on Nightmare on Elm St. #narcolepsy



We are still waiting for an appropriate response by Jeremy Renner, Live with Kelly and Michael. On Monday, Jimmy Kimmel is Kelly's first guest coHost. I have reached out to Kimmel(PWN) to do Narcolepsy right while on the show. To the short list to Real 'PWN' Superheros, I would definitely include Sharon Remo, Stu Carpenter, Michelle Hernandez, and myself whose collective first response efforts grabbed the attention and inspired action by the Narcolepsy Network. Our collective efforts are desiring for a full representation of the symptomatology of Narcolepsy. Granted my humor is a big part of style, it is meant as an attention getter, but mostly a small comfort for us PWN unified by our cause. Viv M. Reese is heading a campaign re-educating a horrendously incorrect segment, including a doctor's appearance, on a morning show in her Costa Rica. She is a true trailblazer!

 The Very Inaccurate Clip Viv Reese is heading Costa Rica's Narcolepsy Awareness (Spanish) 


It is amazing some PWN can work and drive, PWN like myself simply don't know your world. Our best foot forward usually involves more brief moments of lucidity in daily life, followed by frequent cataplexy, sleep paralysis with or without Hypnagogic Hallucinations. For us battling severe narcolepsy and cataplexy(my biggest being laughter and fighting sleepiness) as well as other chronic illnesses is a huge obstacle to getting anything achieved. Medications have helped lessen the severity of my cataplexy, sleep paralysis, but not the frequency of its incidence... instead of breaking a foot, I slam my nose. For those like us, our passion, our job is Narcolepsy, Disability Advocacy. Until Cataplexy and Sleep Paralysis are part of our stereotype... Keep Pushing!

No comments:

Post a Comment

How has your experience differed from mine? How does your opinion differ, remain the same?