The book by Laura D'Ettole and Franco Cecchi
Il Cuore Grande: twenty tales of pain and reality, of courage and rebirth
The Big Heart
, stories of women and men facing the challenge of cardiomyopathies: this book was born around the stories of twenty patients, or their families, who belong to Aicarm (Italian cardiomyopathy association) and wanted to tell their stories. Laura D'Ettole, journalist, has collected, selected and written most of them; Franco Cecchi, president of Aicarm, ensured that explanation and scientific coherence were never lacking, not even in the construction of the book.
“There are twenty stories that capture the various stages of the progression of cardiomyopathies and their treatment – underlines D'Ettole -. A dramatic common trait unites them: the sudden news of the disease overwhelms everyone like a terrible shock. Accepting it and learning to live with it is not easy. Someone denies it, and for a certain period refuses continuity of care. However, there is never whining or self-pity in this book. In all patients there is always the desire to regenerate in order to continue living”, underlines D'Ettole.
“Cardiomyopathies are diseases of the heart muscle that include many different types, often resulting from a genetic mutation that can be passed on to children. They are widespread, because they are present in about 5 people for every thousand inhabitants”, says Cecchi. The stories told in the book, he continues, underline the importance of "psychological" management. An aspect sometimes overlooked even by competent doctors, "which refers to the understanding of having a "different" heart and its acceptance to live with it as serenely as possible". This is why the book contains a choral contribution in the form of a commentary on the various stories of a psychiatrist and psychotherapist (Guendalina Rossi) and of Franco Cecchi as a cardiologist.
The patients who populate this book come from all over Italy, have different ages and social conditions. They share the desire to tell, but it is good to dwell on this term. Today everyone talks about themselves, often to "exhibit" their condition of fragility. They do it on social networks, to increase the like. These tales are of a completely different genre. There is no exhibition of a sentence. They are part of a path of "narrative medicine", a special therapeutic approach built around a triangulation: the patient of course, who tries to bring out his fears and needs; the cardiologist, who builds the most appropriate medical path with him; the family that becomes a real support with its wealth of knowledge.
These "little" stories tell glimpses of life and difficult passages. Sandra speaks, mother of a son who died at a young age for "sudden death", the shock event that unfortunately shines a cone of light on cardiomyopathies when it surprises young athletes unaware of the disease. After 16 years, she has tried to make peace with that terrible mourning and is committed to volunteering in continuous fundraising for scientific research.
There's Francesca, a sports science graduate, who feels tired during her workouts. She looks at her companions running and pretends to be coughing to justify the delays. She discovers the disease and hates it with all her heart. They implant her with a defibrillator and she looks at him like a stranger. Yoga, physical activity and her presence on her social networks to advise those with the same disease as hers will help her find her balance and her will to live again.
Then there are Angela and Giovanna, and their story borders on the unbelievable. The two women meet by chance in the clinic of the Monaldi hospital in Naples and despite the age difference, a sudden and lasting friendship is immediately struck. The course of the disease for Angela is devastating: at the age of just 24, her heart can't take it anymore. A transplant is needed. At this point the story jumps as if in an unknown and mysterious parallel universe. One day Giovanna loses a loved one and donates her organs. That same day “that” new heart will be transplanted into Angela's chest. Today Angela is fine and she wants a child, even if they advise against it. But after what she's been through, nothing scares her anymore.
“In these pages unfortunately there is pain yes, and a lot of reality. But there is also a praise of slowness and possible different rhythms of life, in short, there is a great desire for rebirth that reassures us” says the author. In the end, perhaps the meaning of the Great Heart lies here.
Laura D'Ettole, Franco Cecchi, Il Cuore Grande, stories of women and men facing the challenge of cardiomyopathies, Florence, Polistampa, 2023