A fellow narcoleptic

I was able to relate to sofiarune, the YouTuber in the above video. It's a bit long winded but that comes with being sleepy. Conciseness is not a gift of mine neither.

My precious disability

I haven't talked much about my narcolepsy here. I wanted this blog to be about sleep not me, but yet I shouldn't be afraid to talk about my relationship with sleep. Sleep is awesome in so many ways but , (Deep breath)I'm not going act like it doesn't disable me. So when I ran across Disability Bitch I realized that being candid about my condition can be really liberating.

In her colum on BBC's Ouch, a website for modern people living with disabilities, Disability Bitch takes on "miracle cures." I really loved reading this:

Yes, I HATE MIRACLE CURES, and not just because I take pride in my little crippled identity and don't want to be a boring old normal and all that stuff.

This is so how I feel about my condition. Yeah it sucks, I won't deny that, but at least I know about the obstacles I have to overcome. And I don't have to make up some rags to riches story to make it seem like I have earned my privilege - but that's another subject.

You see, every bloody time the newspapers run a story about some tragic cripple being cured by some amazing new treatment, everyone who bumps into me in the street assumes it's only a matter of hours before I, too, will be saved from my hideous disabled existence in favour of a lifestyle less offensive to the world at large.

Amen, amen. Growing up Christian makes you the subject of prayers and laying of hands and all kinds of things that, frankly, I didn't want. My condition is hidden from strangers so I don't have the same type of story Bitch does, but I'm able to relate to her nevertheless.

Her rant takes a bit of a twist when she tells us about a neighbor that decided to stage a fundraiser to fly Bitch to the US where there is supposed to be a doctor that can cure her "little spasticated limbs".

He said I might even come back walking like him.

Readers, I ran home and locked the door tight. I don't envisage myself coming out until the rest of the human race has died.

Ouch!

Living with Narcolepsy

This week Newsweek's website published the story of a narcoleptic's journey to diagnosis. Before the diagnosis sleepiness had become a normal aspect of Sarah Shonyo's everyday life.

Her friends were very supportive although they don't pass up the obvious opportunity for cheap laughs.

My two best friends immediately e-mailed me a cartoon depicting a job applicant sleeping in an interview and the employer saying, “It says here you have narcolepsy. What’s that?” and then assured me that they would be more than willing to hold my ponytail at dinner to keep my forehead from hitting the table. Another friend told me about a policeman from his hometown who had narcolepsy. After his condition became known, he was referred to by the locals as “Officer Fally-Downy.”

At this point Sarah never fell down as or loss muscle control as a result of narcolepsy. To my knowledge about half of narcoleptics don't develop sever cataplexy. Eventually however Sarah did developed cataplexy.

Its kind of warming to see her friends making light of the situation because laughter is a powerful medicine, but I can only hope that laughter doesn't trigger Sarah's cataplexy. Such irony would not be laughable.

Sleep With Me

This video is by a British band that calls themselves Girlfriends. The group and director both deserve an award because the video is by far the best YouTube video that dealt with the topic of narcolepsy. In "Sleep with Me" we see the Barnaby Legg fight a loosing battle with narcolepsy.

If you are interested in checking out the other the less notable YouTube videos to get a better understanding of this rare yet intreging sleep disorder go right ahead.

Lazy Daisy

Check out this commercial for a narcoleptic doll. Since I have narcolepsy I'm not sure if I should be infuriated, disgusted, bemused or amazed.