12 tales to look the wolf of SMA in the eye
The book, edited by Jacopo Casiraghi aims to face the reality behind a disease, which is the major genetic cause of infant death, delicately. A way to reiterate that it’s not a diversity, but the beauty of a life struggling to achieve peace
“Spinal Muscular Atrophy (SMA) is a rare neuromuscular disease involving weakness and a grave progressive muscular atrophy, caused by the loss of neurons that carry signals from the central nervous system to muscles, by controlling their motion. This disease affects about 1 in 10,000 infants and it is still the major genetic cause of infant death” reads the first text of The Wolf Tells About SMA. The following text is an author’s note, the psychologist Jacopo Casiraghi at the Medical Centre NeMo of Milan: “Telling means to inform, transmit, educate and reveal emotions and new points of view. This book aims to tell about an entire universe and its heroes, by words and images of its characters, so that nobody feels alone and everybody, both young and old, can be helped to see a precious gift full of meanings in everyday life”. The spirit that feeds this anthology of tales is the aim to tell true stories and experiences of a popular world but still unclear: the life of people affected by Spinal Muscular Atrophy. The word “person” is central because the subject of these fairy tales are true events that people lived on their skin and with their mind but transfigured by the fabulous setting.
DIVERSITY AND HARMONY. Creating and telling stories is one of the oldest human traditions, a proper act of human nature able to live one life but to imagine, want or create a thousand more: what opens the introduction to this book is Mario Vargas Llosa’s thought (Nobel Prize for Literature in 2010). Here comes empathy, because we not only have the opportunity to read secret fragments of other people’s lives, where it is still intact the vigorous and shining life connection, but by reading stories they become part of us, they transform us and change our gaze of the world, they fill us with humanity.
Jacopo Casiraghi stands in the current of classical fables, from Aesop to Phaedrus, where the humanization of the animal and the projection of civilization into the wild world become vehicle of an ethical message. What makes this message totally new is the fact that despite the lack of a moral, a right way to go, everyone knows his own path of self-acceptance and self-fulfillment. Diversity is neither a specialty nor a break, but it’s a reality that completely embellishes harmony in order to discover that, after all, we are all a little different and similar at the same time.
LIFE BEYOND DISEASE. The wood set allows the author to tell a wide range of realities in which loss, awareness, pain, loneliness and incomprehensibility combine with recapture, acceptance, brightness, love and moments of inner peace. In this context also the delicate issue of definitive loss takes its place as natural setting of things and the process of letting go to hold a memory tight assumes a universal meaning. By reading you don’t think about disease but about life as if disease were nothing more than a litmus paper to see, feel and internalize life. This is the reason why there is no room for pity, but only for listening to the breathe of many souls embodied in many-sided furry woodland creatures. What about the wolf? It stays there staring you right in the eye. Some days it seems to you that it wins until ripping your heart apart. Sometimes, when you forget him and just listen to your heart, you realize that, after all, it’s nothing more than a part of you and, through thick and thin, you made together a unique story about real life instead. You find out that you can hold the wolf gaze with a sense of inner peace.
The text had a totally unique origin: every fairy tale was approved and modified by people with SMA or parents of children with SMA; the drug company Biogen prepared the project to help people to talk about this disease to others. Some of the tales are for adults so that they can be read and readapted for children. The project was sponsored by the association SMA Families with the amazing IED graphic design including Samuele Gaudio’s illustrations and Davide Sottile’s artworks. The book has been available for free at La Feltrinelli since the 23rd September 2019 and its eBook since the 6th October.
“These small creatures give us a clear teaching. Their innocence, like that of all children, must be preserved and protected because it has no purpose, objectives or prejudices. It just exists. We can perceive the beauty of the universe through them. Who couldn’t be enchanted by the beauty of stars?” reminds us Alberto Fontana, president of Medical Centre NeMo.
Translated by Daniela Marsala