Up close, no one is normal, as we know. Emanuele, affected by a rare disease since he was a child, lives with a heart that was given to him and with the darkness of blindness. Yet his effort to live a normal life, surrounded by the affection of a caring family, dwarfs those who are afraid of dealing with disability or those who face it with a compassionate gaze. In Emanuele’s desire to dream of a family of his own, to enjoy music and the beauty of the world, it makes us doubt that we are the ones who have not understood what life is, whatever he has given us. In this A rare flower, written by Andrea Oftento, Emanuele’s father, for the publishing house L’Orto della Cultura, we all learn what it means to live, not coexist, with a disabling disease.
With his nineteen touching stories, a story of love, strength and courage, Andrea Difesatto introduces us to the world of disability, suffering and the fight against an adverse destiny in front of which one does not necessarily have to bend and then succumb. Dedicated to his son Emanuele, now twenty-one years old, A rare flower invites us to reflect on the search for normality to combat pain and on the loneliness of those who then end up far from the radar of the institutions, incapable of helping those who struggle to live a normal life. Some of the stories are more moving and personal like Invisible, Upwind and how A rare flower, poignant chronicle of days spent in hospital. Childhood memories, the strength of the family union, solidarity emerge between the pages. The love for colors, for nature, the passion for photography. The sometimes strong and sometimes disappointing bond of friendships, the shared beers, the silences full of words or, on the contrary, the useless words that do not console and can hurt the soul in its deepest recesses.
Andrea Difesatto tells us stories of wounded souls rich in dignity and humanity, and often unaware victims of a delightful candour. People with the face of someone who hasn’t gotten anything right in life, who have fallen many times but who have always gotten back up, who have a lot of scars but also a lot of desires. And above all he tells us the drama of a life that is too young and fights to survive and he does it with a smile and a thumbs up. Fabio Poletti
Andrea Difesatto
A rare flower
2024 The garden of culture
pages 120 euros 13
Courtesy of the author Andrea Difesatto and the publisher L’orto della cultura we publish an excerpt from the book A rare flower
TO YOU
I live you every day that I write about you
I am writing to you who are a hero. My, our hero.
I am writing to you to apologize, sorry for all the times that I felt uncomfortable when I met the eyes of people who were observing you with contempt or false understanding, sorry for all the times that I did not understand you, that I scolded, sorry for all the times I raised my voice, for all the times I wanted to be right at all costs and for all the times I seemed insensitive.
I’m sorry for all the times that after I took you back I cried for the regret of having done it, without you realizing it.
I am writing to you to apologize for all the times I stupidly envied other fathers when they told or posted on Facebook, with understandable pride, the successes of their children. Goals scored, baskets hit, musical instruments played, competitions won, scholastic successes, singing, sports, walking and cycling, because being a winner is the only thing that matters.
I am writing to you to say thank you, thank you for all the times we hugged each other, for all the times we held hands, for all the smiles, for all the times you called me dad.
Thank you for all the showers we took together and for all the times I dried your hair and noticed that you were getting taller and taller.
Thank you for all your profound thoughts, for your music, for your sensitivity, for your passions. Thank you for never complaining, for never yelling at me, against mom, against all of us, against the world, against God, against life for everything that was unjustly taken from you.
Thank you for never having cursed the disease that stripped the light and colors from your eyes, that denied you the pleasure of seeing.
I am writing to you to say thank you for never showing anger against anyone, not even against classmates who didn’t show up to your birthday and didn’t invite you to theirs. How the parents of those children disappointed and hurt me.
I am writing to you to hug you tightly and to let you know that all of us in the family and many true friends who are close to us love you, a world of love and that you are and will always be mine and our champion.
You will never be alone.
I am writing to you who are facing hell with unparalleled dignity, to you who that morning from your suffering bed in the hospital had asked: «Dad, tell me the truth, when will I get out of here? In my opinion it’s almost time, I’m passing all the exams.»
I am writing to you, who before the heart transplant listened to the heart surgeon in silence and answered yes to everything he was explaining and proposing to you and without crying you understood every single and cruel step that you would have had to face. I’m writing to you that, while you were shaking my hand tightly, you gave your consent and said: “I’m ready, I was born ready, let’s do it right away, even tonight, the sooner we do it and the sooner I go home.”
I am writing to you that, when the heart surgeon left, you were ashamed of crying and being afraid, you were ashamed of that fear that everyone would have and of those tears that everyone would let flow without being able to stop them.
I am writing to you who have worried about the future and about us. «But then with a new heart will I still love you? Will I still like opera music?”
I am writing to you who, despite living an impossible life, have always demonstrated the pride of the Indian chief Geronimo and the courage of King Leonidas and his three hundred warriors at Thermopylae. I’m writing to you that when you shook my hand you remembered a phrase that we said to each other at home since you were very little: “The hand has five fingers, open they are just fingers but closed they become a fist.”
And to let you know that we all hold your fingers and together we become a fist, invincible, indomitable, we become an avalanche, a storm, a hurricane, all together we become a force and that will be the force that will always keep us united.
I am writing to you that one day you took my hand and placed it next to yours. «Dad, my hand is small while yours is big, one day mine will be big and yours will become small but that day, like you did with me, I will be there for you.»
You believed it and while you said it you looked at me and smiled, sure that when I got older you would help me.
I am writing to you to remind you that Julius Caesar claimed that it was easier to find men willing to die than men capable of enduring pain and suffering, but Julius Caesar did not know you.
I am writing to you who never shed a tear, never exhales a moan, to you who remember everything done together, every place visited, to you who remember the sea, the mountains, the heat of the fire, the cold water of a torrent, the light of a shooting star but you have never, not even once, stopped saying that life is beautiful and that you are a lucky boy.
I am writing to you to say thank you for when, after one hundred and eighty days of silence, with a faint voice you greeted me with hello dad.
For when, in the hospital, during the New Year’s concert you wanted to sing “Libiamo ne’ cheerful chalices that beauty infiora…” and for when in intensive care, holding hands we pretended to dance The beautiful blue Danube.
In my place you would have deserved a princess who, with your sensitivity, would have made you feel like a queen.
I’m writing to you who talks about your girlfriend, the children you will have and the sorrow you will give us when you go to live on your own and while you do it you smile, then you stop. «Ok, let’s do this, I’ll get married but we’ll come and live here so we’ll always be together.»
I’m writing to you to tell you that I don’t know what will happen. Nobody knows, we will only find out by living, but we know that whatever happens we will be together, as always, wherever and however.
It will be difficult but we will learn and grow together.
I am writing to you because you know how much that night was cursed, a night that is impossible to forget and that has not
never stopped hurting. You seemed to have flown away but you fought to stay and came back, that cursed night took your legs but failed to take your courage and your will to live. No darkness has ever managed to obscure your light, yet those black and cowardly demons have tried a thousand times and in a thousand ways to take away light and sounds, but the only result they achieved was to increase the beauty of your soul .
I’m writing to you because watching Lilo & Stitch reminded me of the importance of the word ohana in Hawaiian culture: ohana means family, and as Lilo reminds Stitch, in the family no one is abandoned or forgotten.
I’m writing to you because you always have your thumbs up and at any time to the question How are you always answer Ah! Well.
I write to you and as I do so I dry a silent tear and promise you that neither today nor tomorrow will Spartans die.
© 2024 Publisher THE GARDEN OF CULTURE
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