That Fine Narcoleptic Line

Narcolepsy can be tricky sometimes.

Everyone makes mistakes, has idiosyncrasies, or experiences periods of forgetfulness. Narcolepsy ramps that up to a whole new level. See, when the effects of narcolepsy are more dramatic (cataplexy, sleep paralysis, etc.), people seem more empathetic. But when the effects of narcolepsy are more mundane, people seem to doubt that narcolepsy is even the culprit behind the symptom. Consider the following:

My husband is often late for work. This is despite my best efforts in helping him to wake up well before he needs to leave, preparing his work clothes and lunch, constant notes and reminders (like the one next to the front door which reads, "Wallet? Keys? Meds?", and warnings from superiors at work regarding his tardiness.

My husband is extremely forgetful. (Is there a word stronger than "forgetful?") If he has a grocery list with ten items in hand, he'll forget one. He forgot to stop and gas up the car so often that we finally decided to fill the tank on the same day every week, but he still forgets occasionally. Often, he's only made aware when his car runs out of gas and stops on the side of the road.

It is impossible for my husband to repeat a conversation that he just had. If someone calls us, it's best to let the answering machine pick up if he's is the only one available to answer the call. He simply cannot relay a phone message. Immediately after hanging up, he'll hold his head in frustration, struggling to remember what was just said.

 

The list could go on and on. They may seem like your everyday idiosyncrasies, but for my husband, they are just more of the annoyances that come with having narcolepsy. For me, it's a reminder that there is a fine line between (stereo)typical husband behavior and a narcoleptic's unavoidable errors. Sometimes the line is so fine... that I forget it's even there. I must constantly remind myself that my husband hates making the same little mistakes repeatedly... and I ain't perfect either.

How to Have a Conversation With a Narcoleptic

Image courtesy of Boykung/FreeDigitalPhotos.net

It sounds like the opening to a really good joke, doesn't it?

If you don't already know this, a person with narcolepsy is often tired and sleepy. But that's not all. They often suffer from problems with concentration, short-term memory loss, irritability, and mental confusion. Imagine having all of that going on and try to hold a normal conversation.

It ain't easy.

With my husband, I've learned to repeat things. A lot. It's not that he isn't listening or didn't hear me. It's just that it didn't quite register. Imagine his mind is a sleepy, distracted person trying desperately to play ping-pong. If I fire the ball at him, he definitely won't hit it, but if I lob it gently over and over, eventually he'll reach out at just the right moment and voila! He gets it.

Then there are the other times.

Other conversations are just the opposite. By nature, I'm a fast talker. No, I'm not a swindler - I just speak really quickly. Over the years I've learned to slow down and let people get in a word every now and then, but I never have a problem spitting something out. Every now and then though, my narcoleptic husband out-talks me. Excited and eager to share his thoughts, he impatiently trips over his own words in a rush to get them all out there. It's like verbal ping-pong, it's so fun talking to him in that mode. Back and forth we bounce ideas off of one another, laugh at impromptu jokes, and frequently apologize saying, "I'm sorry, go ahead," when one of us gets too excited and interrupts the other.

It's weird, but that's narcolepsy.

Of course I prefer the times when my husband is more articulate and engaged in the conversation. I fight impatience when he has to speak slowly, when there are lengthy pauses while he fights to remember what he was saying, dead silences as he contemplates an answer to my easy question. At those times, I know he's just a prisoner. Narcolepsy is holding his brain hostage once again.

I still haven't figured out the cost of the ransom.

So for those who genuinely want to know how to talk to their friend, co-worker, or loved one with narcolepsy, the answer is simple: be patient. If they stumble, forget, or ask you to repeat, just be patient and wait for them to hit the ball. They may speak slowly this time 'round, but the next time, you may just need to get your paddle ready.

*For a very insightful view of how a person with narcolepsy sometimes feels trying to converse with people, read this blog post from Confessions of a Narcoleptic.