Bill Stafford is a guest columnist at Clashion.com. In this article, he shares with us a glimpse of what life is like as a narcoleptic. He was first diagnosed with narcolepsy in 1994, at age 54, but can remember experiencing symptoms as early as age ten. Read his account of living with Narcolepsy, and then a short
questions & answers section follows.
My Big Secret – I Am A
Narc! Bill Stafford
No, no, no, not that kind of a Narc! I’m not a Drug Enforcement Agency officer; I am a Narcoleptic. Well, I guess that blows the “secret” part, huh? Just in case you are wondering, “What is a Narcoleptic?” allow me to briefly explain: A Narcoleptic is a person who has narcolepsy. Hey, I said I would briefly explain – how much more brief can I get?
Narcolepsy, often written (N) by insiders, is a neurological sleep disorder with a set of exotic symptoms capable of making life extremely interesting for those who are called “Narcs.” Actually, the more common shorthand for a Narcoleptic is PWN (Person With Narcolepsy). I ask you, would you prefer to think of yourself as a “PWN” or a “Narc?” I prefer the latter because of the reaction it produces from the uninitiated when they hear those magic words, “I am a Narc.”
Since I have a personal disdain for words such as victim, patient, disease, illness, and sufferer, they will not be used herein. In their place, I will substitute (N) and Narc where appropriate.
The exotic symptoms mentioned above bear names like Cataplexy, Hypnagogic Hallucinations, Hypnopompic Hallucinations, Sleep Paralysis, and Night Terrors. On top of that, a whole litany of more ordinary symptoms completes the package: loss of short-term memory, difficulty with concentration, and a strong tendency toward obesity.
One of the most significant characteristics of (N) is the individualistic nature of the disorder. The only symptom common to all Narcs is the tendency to sudden attacks of sleepiness. All others appear randomly. Narcolepsy is like buying a used car – the manufacturer offered a variety of options but your vehicle may or may not come equipped with them. Narcolepsy has a wide range of options but your case may or may not come equipped with them.
Anyone who knows even a little bit about (N) is aware that the main feature of the disorder is that Narcs are subject to suddenly falling asleep anytime, anywhere, regardless of how well rested the person may be.
Narcolepsy could be described as entertaining; not to the Narc, but to their family, friends, and in fact, everyone that comes in contact with them. For example, my dear, sweet mother loves to tell how I fell asleep while talking with her. She sat and watched me sleep for ten minutes or so. I then awoke and continued the conversation from the point where I had left off. I have no recollection of the incident but Mom swears it happened just that way.
My wife, Linda, delights in watching me doze off at dinner with my fork half way to my mouth. Of course, driving can be exciting for everyone in the vehicle. Linda goes into near panic every time I blink. “Are you alright? Do you want me to drive?” Her favorite pastime is sitting beside me in church, poking, jabbing, prodding, and inventing new methods of keeping me awake, none of which are ever successful.
When living with (N), one must accept certain limitations. Driving is definitely a challenge. Any sort of desk job proves to be difficult; in the writing of this article I have probably run up a total of thirty to forty-five minutes in short naps (so far).
It is not wise for a Narc to work on a ladder. A sudden nap of only a few seconds could result in the Narc awaking on the ground. Similarly, working with power tools may leave a Narc digitally deficient. Recent headlines indicate Airport Security is not a good career choice for Narcs since they have no sense of humor when it comes to napping on the job.
Have I plucked your heartstrings? Are you aching to ask, “What can be done to help people with Narcolepsy?” Good question – how kind of you to ask. There is no known cure, but daily treatment with amphetamines enables the Narc to function with at least a semblance of normality.
Bill:
No, I am disabled.
I was a computer draftsman for an environmental engineering company when I was diagnosed. My boss couldn't fire me for it but as soon as we experienced a downturn in business I was chosen as one of five to be "downsized."
Prior to that I always had a difficult time keeping a job more than three or four years. I just assumed the problem was simply not finding the field that was best for me.
C: If you still drive, does that mean your Narcolepsy is not a severe case?
B: No. My case is severe. The medication I take helps me maintain some semblance of normality. Yes, I drive, but only short distances. Since inactivity causes me to go out like a light, I avoid driving in rush-hour traffic. I have found that in lighter traffic with higher speeds where some adrenaline is pumping I have much less of a problem with sleep attacks.
C: Is there such a thing as a minor case of Narcolepsy?
B: Well, everything is relative, so I suppose it could be said there is a level of Narcolepsy that is minor. One must remember, however, that no matter how minor the case, a sleep attack at the wrong time and place can have disastrous results.
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