Recently, ‘Captain America: Civil War’ star Jeremy Renner said that he wanted to be “Captain Narcolepsy… so he could nap whenever he wanted” on Live! with Kelly and Michael. Afterward, many people with narcolepsy and their supporters took to social media to respond.
One particular response caught my attention – written by Wendy Ellsworth, a 34-year-old registered nurse living with narcolepsy in Texas. I asked Wendy’s permission to share it here.
Though you have likely received numerous comments regarding Jeremy Renner’s narcolepsy remark, my response may differ from others received. I do not wish to rip Kelly or Michael apart, for I do understand their positions in hosting the show, entertaining an audience and being able to keep conversation with their guest going.
However, Mr. Renner’s comment about narcolepsy really ‘struck a nerve’ with me (as well as a few thousand of my FB friends). You see, I am one of those awesome people that possess this “superpower” that he so desires!!! Can you believe it?? Jeremy Renner is jealous of ME!?!? It’s like a dream come true!
So, with all of the interest that his now-public yearning is sure to bring to me, I’d like to tell you a little bit about myself. I am a 34 year old Registered Nurse from Texas. I first noticed my ‘abilities’ around 2003 at the age of 21, yet was not diagnosed until 2013.
I have many “superpowers” that arrived under my “N” cape, so I’ve made you a short list:
» I have the ability to keep living everyday under the brain fog of extreme daytime sleepiness which is shown to be the equivalent of a non-superhero being sleep-deprived for 48-72 hours!
» I have the wisdom to know that I will have to take medication for the rest of my life to increase my chances that it will consist of any type of quality.
» I have the willpower to remove my body from bed every morning, though my brain is still asleep, in order to work a full-time job and provide for my 3 children.
» I am able to force my eyelids open, long enough to stand up and begin some type of physical activity to fight the EDS when I doze off during meetings at work.
» I have the strength to continue to push myself to the limits outside of work as well, in order to maintain an “as normal as possible” life for my kids.
… the length of my list of powers is longer than I care to write, but the most important of them all is my determination to be a ‘voice’ for people like myself.
Prior to my own personal diagnosis, I too knew very little about this neurological disorder. The ‘humor’ associated with it through the movie industry had been my only exposure, as is likely the case with your millions of viewers.
To struggle with this invisible disorder is exhausting… mentally, physically, emotionally – but the lack of education and/or misinformation provided through those with influence, such as Mr. Renner, is excruciating.
On behalf of all people with narcolepsy, I kindly ask that you use your position and your stage as a platform on which to educate the public, as opposed to allowing your silence to further condone laughing in the face of ‘superheroes’ like myself.
About Wendy: I am a 34-year-old registered nurse living in Texas with three children. My oldest son, Luke is 16; my daughter, Nixon is almost 7; and my baby boy, Hudson turns 2 today! My partner, Jon and I have been together for 5 years and I would be lost without his support.
REM Runner’s Note: Thank you, Wendy, for sharing your inspiring and heartfelt response. I couldn’t have written anything better myself, so I am so thrilled to share your voice of narcolepsy here!
Please share this post in support of Wendy and the 3 million other real-life narcolepsy superheroes around the world.