Cataplexy Isn't Funny In Person

When our daughter was born, my husband almost dropped her once.

I was enraged. How dare he risk our child's life by not being aware enough to put her down when he realized how tired he was?

Looking back, I can't believe how unreasonable I was.

The first time I remember meeting Narcolepsy's close personal friend, Cataplexy, my husband and I had been dating for awhile. He had this weird habit of taking deep breaths and closing his eyes whenever he was really amused at something. It was like he was trying to keep himself from laughing. Sometimes when I give into hysterical laughter, I get a bit of a piercing headache that goes away quickly. Sort of a laughter-brain-freeze, so I understood his desire to suppress his laughter.

But he wasn't always successful.

One day we were having a great time - dancing, laughing, playing around, and in the middle of laughing, he suddenly fell to the floor. Quite suddenly, actually. This was no slow slump or slide down the wall - he fell down like he'd fainted or something. Still laughing, I went over to him to help him up. I thought he was still joking around. I put out my hand.

From Vector Magz

"Come on, get up," I said.
When he didn't move, I stopped laughing and stared. He was just lying there, eyes open, his face still frozen in a smile. It was creepy. He looked like the Joker.
"Come on, knock it off," I said, and grabbed his arm.
It took a few minutes, but I finally got him to "unfreeze" and take my hand. By now, I was concerned... and confused.
"What's wrong? Did you hurt something?"
He didn't respond.
"Take my hand, I'll help you up," I said.
He whispered, "I can't."
I looked around as if someone could help us, but we were alone. I considered calling an ambulance.
"Why can't you get up?" I asked again.
His hand moved in mine - very slightly.
"I can't make a fist yet," he said.
Several minutes passed. Finally, he gained enough strength to sit up and I helped him onto the couch. Within 20 minutes, he was back to normal.

My soon-to-be-fiance was embarrassed and couldn't really explain what had happened to him. He told me that any strong emotion - anger, laughter, fear, even excitement - could cause him to "feel weak" and sometimes even collapse.

Baffled, I told him that he probably just needed a multivitamin.

Years later, after his narcolepsy/cataplexy diagnosis, I apologized to my husband for yelling at him the day he almost dropped the baby. I know that accidents happen and I also know how much he adores our daughter and would never intentionally put her in danger. He gracefully accepted my apology, but then I told him that I had a confession:

Once when I was changing her diaper, she fell off the changing table.

I swear I don't know what happened! One minute she was on the changing table, preparing for a new diaper, and the next minute she was on the floor, staring up at me with a really surprised look on her face. That's not the best way to discover that your baby has learned to roll over, but it happens. I was frantic but she was totally fine. You know, my husband didn't even get angry - didn't call me a hypocrite... he didn't miss a beat when he said,

"Good thing we had carpeting."

Falling Asleep In Public

Image courtesy of imagerymajestic/FreeDigitalPhotos.net

I remember the first time my husband fell asleep in public.

We were at a talk, nicely dressed, surrounded by other nicely dressed people. It wasn't an enormous crowd; but it was a roomful - a little over 100. While taking notes, I was distracted, but when I gave my hand a rest, I noticed my husband's chin was on his chest. His eyes were open - barely - but he looked like he was in some sort of stupor. I gave him what I hoped was an unnoticeable nudge, which only slightly helped. I kept a close eye on him after that. Sure enough, just a couple of minutes later, his head was drooping again. Then he dropped a book. When he nearly fell out of his chair, I leaned over and hissed, "Why don't you go get some water?"

I didn't really hear the rest of the talk. Instead, I was hearing an angry litany of questions in my head.

Why are you so tired? You got more sleep than I did last night!
This is so interesting! Why aren't you interested in this?
How could you embarrass me like that?
When you started feeling sleepy, why didn't you just get up and go do something?!!!

Of all the inconsiderate, selfish, embarrassing... how could he have done that... to ME? I hate to admit it now, but I really was mortified.

Long after that talk, the narcolepsy diagnosis, and a few years of marriage, we had a conversation in which I felt a sincere apology was long overdue.

An apology from me.

See, Narcoleptics don't get to pick and choose when they're going to get tired, have a sleep attack, or lose concentration. That's why it's called narcolepsy! My husband never intended to fall asleep at that talk or any other public event. He can't always get up and get some water because... he's falling asleep. He holds a book in his hand to try to keep himself awake. Most importantly, he doesn't mean to embarrass me - or himself. That's right. It's not about me - it's about how annoyed and embarrassed he must feel as the one actually falling asleep in the middle of a super loud movie, or a concert, or anything else that he would like to watch but can't.

Long gone are the days when I would see someone fall asleep at a public event and "tsk" under my breath. Yep, I was one of those people. Now when I see someone who can't stay awake, my only thought is if anyone else notices, they'll give the sleeper the benefit of the doubt.

We actually still attend talks every week. I still take notes, and my husband still falls asleep sometimes. It's OK though. The notes help me to tell him what he missed.