‘To Sleep, Perchance…’

Narcolepsy is not something you try to fit into your life, but something you learn to build your life around, like alcoholism, drug addiction, gambling or any other life-wrecking condition. The difference being that with these other conditions one can, with determination, support from family and friends, and professional help, hope to overcome them. No amount of will power, determination or help can cure narcolepsy, only prescribed drugs can to a degree keep it under control. Unfortunately, the regular prescribed drugs for this condition do not help every sufferer, which in itself presents something of a problem. Such is the cross we narcoleptics bear, and in the case of most fellow sufferers I have met, bear with dignity, fortitude and a sense of humour, the latter being an essential quality without which we would surely go mad.

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The life of a narcoleptic can be, and usually is, bizarre to say the least. For the majority of other disabilities the cause is either known to medical science, and a suitable treatment available, either by way of medication, as with epilepsy, schizophrenia, or whatever; or in the case of crippled, deformed or amputated limbs, artificial appliances, automated wheelchairs and various technological advances can enable the sufferer to obtain a high degree of independence and a modicum of normality. Legislation requires all companies to provide facilities for disabled employees, and I have even seen blind and severely restricted sighted people working in jobs which a few years ago would have been impossible for them, voice-activated computers and such like advances opening up a whole new world of work for such people. Even people like Professor Steven Hawkins, paralyzed from the neck down, no longer able to speak or use their hands, pursue their careers via the use of a highly sensitive control stick held in the mouth and connected electronically to their computer. In the same way they are able to operate their wheelchairs, giving them the necessary mobility. Steve Reeves, the actor of Superman fame, after an horrendous accident leaving him totally paralyzed, was, by means of the same technology able to live a meaningful life. No one in their right mind would dream of persecuting such people, or ridiculing them for their disability, on the contrary, we all admire and respect the tremendous effort required by them to simply function at all.

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Of all the maladies that may befall a human being however, narcolepsy must surely be one of the cruelest. Like those who suffer from epilepsy, narcoleptics have come up against a wall of ignorance, indifference and unwillingness by employers and workers alike to even try to understand the nature of the affliction. It has always been something to keep to one’s self, to keep secret wherever possible from those one works with and from those whom one works for. Narcolepsy, like epilepsy, is not something one can hope to hide for very long however, since the sufferer has no control over when and where he or she will suffer a seizure. As with epilepsy, all that is required of one’s fellow workers, and one’s fellow human beings in general, is not sympathy, but an understanding of what the illness is, and how the symptoms manifest themselves

It is the strange thing with the human race, that in virtually all cultures, illnesses of the mind, as opposed to those of the body, meet with such a variety of reactions, from superstition and fear to trying to avoid the issues completely. But if dealing with the way ordinary human beings react to having such a person amongst them is difficult enough to cope with, what is really pathetic is the barrier one faces with many G.P.s. It was not until I met up for the first time with a gathering of fellow narcoleptics that I realized how widespread the lack of specialized knowledge of this condition amongst the medical profession has been, and sadly although to a lesser extent, still is.