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Narcolepsy, quarantine and self isolation

How three apparently different things come together to create one: loneliness.

“Come on, come all ladies and gentlemen!”
The more, the merrier”

This is more or less the way a narcoleptic feels when he falls asleep in public and, waking up, he finds around him a large group of people with the look of researchers watching a panda mating.

Yes, because falling asleep everywhere while you are doing any sort of action is not really an usual thing, people often react in a comical … or rude way, depending on their fears.

I am very lucky, I am not ashamed of my illness and when I enter a room or in a new situation, I always inform the staff about the possibility that I can suddenly fall asleep, with the recommendation not to touch me and simply let me sleep.

So, even though when I go out I am always accompanied, I try to avoid embarrassment to those who are with me and unnecessary fright to those who see me suddenly sleeping.

Yes … because the way I turn off so suddenly even while I perform any action, is often mistakenly confused for medical emergencies such as heart attacks or strokes.

Informing and reassuring others before a sleep attack surprises me in public has so far proved to be a winning move.

I learned that people react to events if they are afraid or do not know what to do, but if properly informed they can become strong allies in a difficult situation and act correctly and constructively.

Building a protective net around you is essential to be able to live a satisfying life, without the bad feeling of being a freak.

But is this for everyone? Unfortunately no.

I have read and listened to experiences from narcoleptics who live the judgment of other people with great discomfort, people that suffer from the astonished looks or the restrained giggles, and suffer from it so much to the point of isolating themselves.

People who live every day with the weight of disturbed night’s sleep, terrifying nightmares, hallucinations that surprise you, perhaps while you are in full sleep paralysis and you cannot move. The pain of the constant tiredness, the frustration for not being able to complete everything they set themselves, the sense of guilt of being boring for those around them … this increases their discomfort leading to self isolation, because they are ashamed.

The stories I have heard tell very different situations and approaches to the disease, which find different opportunities in this period of quarantine.

Those who have created around them awareness among people close to them and in the places they usually hang out at, live this moment with a bit of annoyance and try to find things to do to stay active and not give in to the temptation of the prolonged nap or daytime sleep non-stop. I have seen many social pages of people with narcolepsy who have decided to get involved, each with their own skills, to be useful and not to succumb to daytime sleepiness with the risk of spending sleepless nights.

Those who normally live as if they were already in quarantine, with the fear of frequenting crowded places or with the feeling of being “unlucky” and destined for a recluse life, live this moment as a confirmation of their fears and feel authorized to sleep more and to take less care of himself.

I listened to sad words, stories of anger and resignation, as if Narcolepsy was the bad witch of some Northern European fairy tale, and this touched me a lot.

I understand it and I am sorry because, although it’s not an easy disease and creates headache for those who have it, you can face it and you can live a life full of satisfaction..

I know very well what it means to live with a feeling of tiredness that never leaves you, to suddenly fall asleep and never know if and when it will happen, having to check your diet by eating few carbohydrates and only in the evening to limit daytime sleepiness, to wake up terrified with terrible hallucinations and in full sleep paralysis without being able to move a muscle or make a sound. Seeing monsters and not being able to scream, with your heart pounding, your eyes wide and paralyzed vocal cords. Defenseless, with the terror of dying. Moments, that you’ll remember for life … and sometimes you hope not to fall asleep so you never have to live them again.

Feeling frustrated for not having the strength to keep the rhythm of the world outside, which inevitably advances and expects us to be fast, productive and efficient, while you feel as an inadequate sloth.

Feeling deeply sad when you see a little disappointment in the eyes of those around you for a dinner or a canceled trip because you just can’t do it.

Stop cooking when you’re alone, as in my case, after getting burnt or cut because I fell asleep in the kitchen and not being able to prepare a surprise dinner for your boyfriend.

Stop driving and having to depend on someone to accompany you.

I know all these things.

This is why I say that you can face them and be happy.

Albert Camus said “By always turning on yourself, seeing and always doing the same things, you lose the habit and the possibility of exercising your intelligence: slowly everything closes down, hardens and atrophies like a muscle.”

I think these words fit perfectly to narcoleptic people who have not yet found the courage to get out of their shell, and live crumpled on themselves under a warm cover that, however, is not able to warm their heart which after a while starts to harden and think that the world is wrong …

Being in quarantine with Narcolepsy is a temporary condition not a destiny.

This moment will pass, and will leave in all of us different thoughts and feelings that may or may not be useful for getting out of one’s own isolation.

In order for this isolation, often self-inflicted, not to become solitude, it’s good to remember that it’s up to us who live and know Narcolepsy, to tell it and share it with the loved ones.

We explain them what is useful and what annoys us (for example, I hate being told “you should sleep a little so maybe you don’t collapse later” … as if you could do it on command …), we ask for help when we need it and we share our passions and our projects.

Let’s raise the bar of the claim towards ourselves a little more.

We are special and we can really do everything, only in a different way.

Who said that “the usual way” is the best one?

Feeling sorry for ourselves only lead us to close even more and it makes us see the world from outside rather than being part of it.

Quarantine has happened, self-isolation is chosen, loneliness is built.

You can demolish it, as I’m doing, sharing my thoughts, my limits and my unshakable dreams with you.

Yes … my unwavering dreams … that I will tell you, to make you a party to how obstacles in life can be a springboard towards wonderful journeys.

Sleep, dream, live. And be disgustingly happy.

And you? What are your dreams?

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