This is a letter from a French Narcoleptic who killed himself in October 2014. He was 26 years old. He suffered from Narcolepsy since he was 14 and was diagnosed at 16 years old.
After being a brilliant student in political science, he moved towards to music, his passion. He had just finished writing and recording his first album which was supposed to be released in November 2014.
His family and friends did their best to support every moment while thinking that over time, he was managing to tame narcolepsy.
This letter was written in French and it was translated by Patrice from the Major Somnolence Disorder Facebook group:
Letter to a kind unknown person
Maybe you’re curious to know what is my illness?
You’re probably enough detached from me to listen serenely.
I met very few people who were able to listen. Maybe any.
But you’re here, with your fresh mind and your peaceful eye. You’re here, and because we could meet and maybe (I do not doubt) we could appreciate ourselves, you whisper me a sincere attention.
So I will try to present you my illness with as much lucidity as I can. I’ll explain you how this disease is hardly a sinking despite appearances.
I will also try to not spread myself too much, the principle of this disease being relatively simple in my opinion. Almost as simple as the rechargeable battery principle.
The violence of some of my statements may offend you and may awake in you some suspicions. In this regard, I will try to put my pain aside to explain you this disease without any exaggeration.
Sometimes when the body suffers, the mind receives this pain disproportionately. I also experienced this pitfall and I couldn’t talk to you 5 years ago as I’m doing right now.
It took me 10 years to succeed to free my mind of this enormous weight. Yesterday when my body was suffering, my mind was too and these two pains seemed to accumulate themselves. It’s because I had not yet accepted the disease, I had not yet taken the measure of its magnitude. I would not claim to have succeeded to accept it totally, but the outcome I found, the emergency door I chose to take, allows me the luxury of an ultimate detachment.
Finally, if you agree, and if I have not already exhausted your patience, I wish to entrust myself to you on this other life I would wanted to know if the disease had not seized me so violently. Pain gave me the true taste of things, learned me what I really love and at least I owe it that.
What is the point, you would say, if it is to end his days without having enjoyed? It’s because the object of my desire is an inacessible horizon. Can we cross the Atlantic with a ruined raft? What am I saying? Can we just cross the English Channel?
This disease exhausts you every day and you ask yourself “Why? “. But this is its essence. It does not need a reason. It exhausts you and that’s all, as it’s a genetic malformation.
Sleeping 15 hours will not help you either. The first time your body will fight fairly easily and your mind will naturally judged this tiredness like a temporary one; or worse, it’s just a mononucleosis? But no, you will live with it all your life!
When you’ll understand: brace yourself. Each day will look like a day after a sleepless night, or as a tomorrow of drunkenness.
So what? Give up so quickly? No, you are part of the lions race.
Somehow, you will adapt yourself to the world of normal people. As a starving in the Garden of Eden attending powerless to the banquet of Gargantua.
Permanently on the edge of sleep, you’ll have to learn to not dive. You will use all the tips, the tricks, the subterfuges you can.
Gradually, from the lack of sleep will born a nervous fatigue. The spirit will fight against the body, but strength to fight: it will use it.
Not in days, not in months. No, you’re stronger than that! It will take several years …
You, the one who were hoping to heal sooner or later, you are still the same ten years later, with some disease addition: reflux, back pain, allergies, hypersensitivity to stress, chronic cold members. And you don’t have 26 years yet.
All this without mentioning the social problems that the disease causes. Unable to go out at night without being completely broken the next day, for example, inability to socialize during the day because of fatigue.
You may say, “but there are much more serious diseases than this one,” and in fact, I will give you reason. But as in most diseases, the patient has a certain indulgence from society (would you blame a blind person to cross off accidentally?). The narcoleptic comes up either against society sarcasm when he is recognized as he is, either against a real guilt. With explicit or innuendo accusations ranging from “idle” to “are you a junkie?”
Narcoleptics should receive financial assistance from the state as well as most of disabling diseases.
If reading this article has been a trigger for you please seek help and contact your local helpline, such as Lifeline or Beyond Blue.