It’s not as cute as when Mr. Bean does it

Has anyone seen that movie Rat Race? It was one of those awful comedy attempts of the 2000s about a ‘Amazing Race’ style competition. One of the characters in it is a sweet man who has narcolepsy, played by Rowan Atkinson, whom I grew up knowing as Mr. Bean. He says always up playing those quirky comedic rules, and this one was no different.

For those of you who don’t know, Narcolepsy is a rare, chronic sleep disorder that causes overwhelming drowsiness. Basically that means that people with narcolepsy experience moments of extreme tiredness where they can suddenly, and without warning, fall asleep. It can last anywhere from a few seconds to several minutes. And when I say ‘without warning’ I mean it. They can be at work, school, reading, eating, mid-conversation, walking, and even more dangerously, driving.

In some cases it’s genetic, but mostly diagnosis of the brain disorder is sporadic. Most get diagnosed between 7 and 25 years of age, according to the National Institute of Neurological Disorders. But, in my particular case it’s brought on by my certain ‘medicine cocktail’ if you will. My doctor called it drug-induced Narcolepsy, which is rare, but can obviously happen in certain cases given the right mixture of chemicals.

And for me… my narcolepsy isn’t shy with rearing its ugly head at any and all opportunities. I’ve fallen asleep while riding in the car, walking, standing, and very often in mid-sentence with friends and family. It would be tolerable if falling asleep was all that it was, but of course it’s not. I fall asleep mid-sentence/mid-conversation and usually forget which conversation I was having. For example, I could be talking about the weather and climate changes, and then I doze off, but when I wake I launch right into a completely different conversation about lap top bags versus briefcases. The person I’m speaking with tends to be incredibly confused, having no idea what I’m going on about, and I have no idea that my mind has chanted the original topic of conversation. I end up being very embarrassed and mortified, and my conversation partner is dumbfounded.

But it’s not my fault! I can’t control it! And it drives me nuts! I never know when I’m going to doze. Sometimes I nod off and wake up without even realizing I was asleep. I’ve been told that when that happens I can be asleep for several minutes and not even realize. I open my eyes thinking that I closed them for merely a few seconds, when in reality it was more like 5 minutes.

Lucky for me, I don’t drive. So I’ve never been put in a really dangerous situation. Though on three occasions now I have spilt hot beverages on my lap, as I fell asleep while holding cups of coffee or chai. And I did fall asleep while standing once. I fell into a wall. It hurt.

They weren’t kidding when that said I was a “fall risk”. I should pay attention more when my doctor talks…

Mostly when others see me do this they won’t bring it up, or are polite enough to carry on talking. But there’s always that one person that just has to make a big deal about it, and usually loudly and in public. Yesterday it was a friend of a friend at a BBQ I went to.

To be fair to me, I was actually exhausted enough without having to deal with this sleeping disorder. I had been up late the night before to board a redeye flight from Honolulu to San Francisco. I’d had maybe 4 hours of sleep and it was a fairly warm day and late afternoon. A few of us were sitting in a circle of chairs on the deck, and I was holding an empty plastic cup in my hand. I woke up the second the cup dropped from my fingertips to the floor, as the noise woke me.

A few turned to look, and the woman to my left reached down to help me pick up the cup as I mumbled an apologetic “Sorry, dropped my cup”. Everything could have continued on as normal, with no pause in the conversation, except that the man sitting directly across from me said in a rather loud, obnoxious voice, “You dropped it because you fell asleep”. Prompting everyone to then turn and look at me with fresh eyes, wondering why this woman in her thirties was falling asleep mid-conversation during a late afternoon BBQ.

I know I could have said I had jetlag. It would have been a perfectly acceptable excuse, and a truthful one. But something in me snapped, I guess I was feeling snippy from the exhaustion. And so I gave him a loud matching response of

“Yeah, it’s my medication-induced narcolepsy.”

I may have even had a bit of defiance in my eye. I was hoping that statement would convey a myriad of things for me so that no more explanation was needed. Such as, yeah I’m sick enough to be taking enough medications that would cause that kind of disorder, and thanks for bringing it up here in front of a bunch of people I don’t know, kudos to you!

He didn’t get the hint. I got a raised eyebrow, and as he opened his mouth (I feared to ask an unwelcome question) I stood up and excused myself, walking away in search of nibbles and people who didn’t out me.

I guess the point of my story/rant is that we see these illnesses or disorders on tv and we laugh because Hollywood glamorizes everything. So we end up believing it’s not a big deal, or maybe it’s funny. But it’s not. It’s not a joke, and it’s real. It’s real, and it’s happening. And there’s no cure.

Great.

Another one bites the dust.

 

 

If you would like to help support me, please visit my campaign at

Christine Lilley’s Life Fund

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About sixthousandsteps

In March of 2013, I was diagnosed with chronic Rheumatoid Arthritis and was told my disease was very aggressive. Every day since then has been an ongoing struggle and life lesson on how to stay positive and keep fighting. This blog is a glimpse of how it all came to be, and who knows what the future holds.

Posted on August 16, 2015, in The Journey and tagged , , , , , , , , . Bookmark the permalink. Leave a comment.

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