Author: Sue Lauman
I live with narcolepsy everyday. Not that I am a narcoleptic, but Richmond, my husband is. For those of you who aren’t familiar, narcolepsy is a condition in which the sufferer is sleepy all the time.
Many people have seen the narcoleptics on TV who will be standing there and then collapse into a heap because they fall asleep without warning. Fortunately, Rich isn’t one of those. Although sometimes I wish he was because that would be such a great cocktail-party trick. It would be close to the human equivalent of those little goats that faint whenever they get scared. No, his narcolepsy is slightly more annoying and pervasive.
Rich’s narcolepsy manifests itself in a few different ways. First of all, there are the fugue states. This is by definition, “an altered state of consciousness in which a person may move about purposefully and even speak, but is not fully aware”. Now, wives all over are probably saying to themselves, “Wait a minute, my husband does this all the time; maybe he is narcoleptic”. Sadly ladies, it is unlikely that your husband is narcoleptic. Although he may be just nodding and agreeing when you are talking to him, if you look carefully you’ll probably notice that he is watching the game over your shoulder. On the other hand, my husband is truly unaware.
During the first couple years we were married, Rich’s condition was the cause of much distress. I would come home from work and sit down to tell him about my day. He would look at me, nod and smile as I relayed what I thought was a particularly exciting story. I would then wait for his reaction and he would stare back at me blankly and say, “Sorry, I didn’t catch that. Can you tell me again?”. Initially, I thought he found me boring and just wasn’t listening. This was not the case though and I eventually learned to recognize the look which said, “I may seem to be listening, but really I am asleep.”
I also learned that there were opportune times to ask him to do things that he wasn’t keen about doing. When he is in this state, he will just nod and smile. After a couple of days, I can then say, “Why didn’t you clean the office (mow the lawn, take out the recycling, etc.) like you said you would?” He can’t argue because of course he doesn’t remember the conversation or his consent to perform the tasks. Occasionally, the narcolepsy works in my favour.
Another manifestation of this disorder is the hallucinations. There are times he is in the REM stage of sleep without actually sleeping, and then they begin. Often he will wake-up and still be dreaming, but occasionally he will see or feel things that aren’t there as he is going to sleep at night.
When we were on our honeymoon in Hawaii (where there is an overabundance of sushi restaurants), he woke me in the middle of the night to share his dream. “Look what I’ve got!” he said pointing at his pillow. I rolled over to go back to sleep. He poked at me again, smiled and said in his most clever voice, giving me a hint, “Little fishies. You know, if you knew sushi like I knew sushi”. Staring at his pillow with a big grin, he waited for me to notice. I obviously hadn’t caught on that his pillow was really a giant sushi platter in his mind. “Sushi,” he said, “I’ve got sushi!” At this point I explained to him that what he really had was a pillow, I took it away from him and went back to sleep.
Through the years, there were a few other occasions where the hallucinations went awry. There was the time I was thrown out of bed because I was in his way when he needed to “save the children from falling in the well”. That particular incident was memorable to say the least. I am only 5’3” and Rich is a big 6’4” and hitting the wall was rather scary.
Perhaps the most annoying aspect of narcolepsy is what is termed “EDS”. I know this sounds like it could be an interesting syndrome, but it really stands for “excessive daytime sleepiness”. You may be thinking, “Isn’t that what narcolepsy is all about?” It can be irritating - mostly because Rich often says, “I don’t know why I am so tired today”. To which I respond, “Because you are NARCOLEPTIC!”. We can still have this exchange a couple of times a week.
Rich and I have been married 17 years, and for the most part it has been wonderful. The genetic jackpot that produced the person my husband is today, (an identical twin with narcolepsy, hemophilia and colour blindness) has certainly made life more interesting than it might be for other couples.
Anecdotal entertainment is one of the few benefits of Rich’s narcolepsy, and this is tempered with the lack of sleep on my part due to the talking and acting out. Although I live with it everyday, I wouldn’t change it for anything. Besides, who really needs eight hours of sleep a night?
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About the Author
Sue Lauman is a freelance writer. Sue is a dedicated wife and mother who currently works in resort marketing. She also takes an active role in Breast Cancer awareness and fund raising.
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