May 24, 2019, Sharm el Sheikh.
It was a wonderful day and, as it has been happening for years, I was in Sharm el Sheikh for a coaching session during a training course.
It was very hot, perhaps too hot… I sweat and it seemed to me that oxygen was not enough, despite the open windows, despite the sea.
I couldn’t stand anything, I was exhausted. I didn’t sleep well for many nights, I often had very severe chest pains and faints happened daily.
Although I have been hypertensive and diabetic for years, I didn’t worry much.
I had been taking my medications regularly and had done sports, exactly as the doctors who was treating me had told me.
Yet that pain… began to scare.
It was strong, very strong, as if someone crushed my heart with their hands. I was out of breath, I sweat cold, I couldn’t even speak. And after a while, I passed out.
My partner decided to call the village doctor: the intervention was immediate.
They thought it was a heart attack, they put a nitroglycerin tablet under my tongue, they loaded me in the car and we were on the run to the international Clinic.
Even today I relive that journey as if it were a psychedelic film: open windows and crazy speed, the Koran read on the radio and a terrible strawberry deodorant smell… I think that was not how I imagined I would die, but that it would surely have been an epic tale.
I already imagined the faces of my friends, when they would have told them of that journey, as the odyssey of a brave hero, who died a moment before arriving in the hospital, wrapped in a chemical scent of strawberries, covered by a Mickey Mouse shirt and under a scorching sun.
Story postponed, I hope for many years: hospitalization in intensive care, monitors, exams and a constant coming and going of bizarre arrivals: a drunk Russian who vomited like Linda Blair, an unconscious English who snored. And me.
I was in my bed, wearing my Mickey Mouse shirt, sweaty and scared.
I began to wonder how this whole story would have ended and if I could ever tell it.
Despite everything, I could see how human and professional they were in this Egyptian clinic.
And then came the diagnosis: it wasn’t a heart attack. It was angina, and once back to Italy I would have to do other tests to avoid future problems.
Thus began a period of visits, hospitalizations, invasive tests and therapies that left me without strength.
And the faints were always there. The pain passed but the faints did not.
They happened several times a day, lasted many minutes, sometimes even half an hour, and no one could wake me up in any way.
This was the beginning of a diagnostic process that suddenly stopped and left me breathless: we were doing everything wrong.
The angina was certainly there, and still is today.
But I didn’t faint: I just SLEPT!
“I’M SLEEPING!!! Fuck it, I’M SLEEPING !!! Look, don’t I look like this one? ”
Then it started a series of messages and phone calls.
I started gathering opinions and comments from my partner, friends and relatives, those who had seen me feeling bad for months: everyone agrees… “actually…”
Actually, sometimes, looking for information and comparing them helps to have a complete picture and the courage to keep going, to change direction, to put your foot down and to demand that doctors listen to you.
Why had no doctor ever asked me simple questions?
Why did they focus only on the heart, without listening to me when I told them about my “fainting”?
Why didn’t anyone listen to me when I said I had been sleeping badly and I had been waking up from my “fainting” with the feeling of not being able to move or speak?
Why did I have to realize I was sick watching a video on Youtube?
Why was it a nurse, a family friend (whom I will always thank), who sent me the tests on sleepiness and advised me to investigate my ailments with a polysomnography?
I am finding out the reason why just now, and that’s why I am telling you my story.
Because narcolepsy is a rare disease.
From a video, an intuition and a search on Google, I found a neurologist who immediately recognized my symptoms and came to a diagnosis, giving me the name of what was happening to me: narcolepsy with cataplexy.
Today, I am proud to know.
“How do you get interested in a book that doesn’t even have a figure?” says Alice in Wonderland.
And that’s right… Now that I know the title and I have many figures to place in it, this book interests me a lot.
And by experiencing it firsthand, I want to take you by the hand and show you how a rare disease can be interesting and at times funny, for everyone.
Because having a rare disease means starting over, every day.
The beginning is always today and that’s the beauty.