Narcolepsy is a strange disease: sometimes it seems I feel well and just very tired, other times, I realize that the limits and problems are many.
Yet despite this, I don’t feel “unfortunate” and I don’t wonder why it happened to me … I just live it and with it I live the limits as a challenge and not as a brake to my happiness.
After all, from what I see in the world, even those who are not narcoleptic often cannot be happy despite being healthy.
So I live my days with the awareness that no day is the same as the other and only I can make the difference.
Not the world, not the people around me, not the drugs.
The responsibility is mine and it’s all about deciding every day, even and especially in the “brown” ones, as I want to feel.
There are days so heavy that make me think that perhaps this is a burden that I won’t be able to carry all my life … days when the falls, the bumps on the head and the lack of autonomy seem to be too much.
Sometimes I think that nightmares and hallucinations will make me die of fear and that the panda dark circles under my eyes are now a “special sign” to be written on the identity card … and incredibly I laugh about it.
Yes, I smile and I think about how much time people waste complaining about futile, useless or easily solvable things … then I tell myself that everyone can understand the real greatness of a problem only on the basis of what he has experienced.
Comparison and experience are the necessary tools so that people can measure themselves with the strength with which they respond to problems.
So sometimes I get asked: “How do you do it?” and my answer is always the same: I didn’t decide to be narcoleptic, I didn’t ask to face all these changes in my life.
The only thing that depends on me is how I live it.
It’s here that I discover the most beautiful part of this situation, that strong and “useful” feeling that helps me every day to keep firm the belief that illness is not a curse.
The beautiful part are the colors of my nightmares, the peculiarity of feeling observed while I have hallucinations, the unbelief of feeling so fragile while things fall out of my hand or my legs give in and the amazement of feeling strong while I train.
The nice part is cooking, even if there is someone close by who checks that I don’t fall asleep and burn myself, using my pans and not the food processor.
It’s rediscovering the pleasure of taking a walk after days closed in the house, or the peace and the lightness experienced after a rare night of peaceful sleep.
The amazement of being able to complete any commitment without falling asleep and the consequent happiness.
The wonder is all here, in realizing that the disease has put me in front of two choices: to live concentrating on everything that I can no longer do or to live realizing how many things I can still do.
I have chosen the second one and I’ve organized myself to enhance this part, to give me the opportunity to live a full and happy existence.
So I started training again, for now online because of the quarantine, warning my personal trainer (very precious friend) of the possibility of a few naps between one exercise and another.
I resumed working online, I created a social page dedicated to the collaborators of my business, “my” collaborators, where I interact with them, motivate them and even make live broadcasts!
And then I opened this blog, to open up to the world, to give others this experience and the lessons I draw from it, so that they become useful for other people who experience this situation.
In short, everything I live is a great privilege because it allows me, every day, to look at things with the eyes of a child and to amaze me and enjoy everything considered “taken for granted” by most.
The wonder is here, behind the dark circles, hidden among the trees during a walk or in the colors of a pan of vegetables that I
It’s enough to just open your eyes and know that, just like in Monopoly, each of us can draw the probability or the unexpected card.
The unexpected card happened to me and it’s called Narcolepsy.
The probability card happened as well and is that my life continues to be a wonder.
Because it depends on me, it’s my responsibility to make my life a masterpiece, despite everything.
I am doing it my way, trying to enjoy every moment with the people I love and above all remembering that every moment is precious and useful.
And that’s enough to see the wonder of my roommate, Narcolepsy.