“I am a free man”
Living with a devastating illness — yet not wanting to give up a single day of life
By Maddalena Maltese
ALS. These three letters — amyotrophic lateral sclerosis, a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord — became part of Francesco Sala’s vocabulary on June 13, 2016. He was in the city of Bologna, Italy, for a medical exam. In the months prior he had often lost his balance, fell and lost control over his movements.
Francesco was 58 when those three letters determined his future. His motor neurons would die, and with them the ability of the brain to initiate and control his ability to speak, eat, move and breathe.
Today Francesco lies motionless in a bed. A few years ago, he was a supervisor for projects related to a hospital, an international pharmacy and Albanian Caritas. Now he breathes and is fed through a series of tubes.
Up until August, he was able to communicate by moving his pupils on an optical communicator linked with a software that transformed the words on the screen into voice. Now his gaze is motionless.
Despite everything, Francesco Sala, SLAFNC59, as he is known by doctors and hospitals, is a free and happy man. For him, the acronym ALS (SLA in Italian) has become “sono libero di amare” — I am free to love.
“When the muscles do not lift the limbs, the sense of smell does not perceive the scents, the touch does not distinguish the surface, the taste does not reveal the flavors, the voice does not communicate, the mouth does not swallow: what kind of a body is it? It is a question that I sometimes perceive in the eyes of people around,” he wrote in a page of his autobiographical book, which he dictated through a communicator. “It’s the atrocious doubt of many sick people who, like me, depend on those who care for them for everything.
“Yet I live, I love, I suffer, I rejoice. Beyond my limits, I am.”
In 2016, when Francesco received the envelope with the diagnosis inside, Paola, his wife, was next to him. Leaving the hospital, they were stunned, asking each other: “Why me, why us?” Heading home on the highway, tears ran down on their faces.
“God will open a way for us,” they repeated to each other, while a thought crossed the mind of Francesco: “That acronym ALS will not imprison me; it will not be able to deprive me of the greatest freedom.”
After the diagnosis, a new page began for both of them: therapies, dozens of medical tests, requests for special beds and walkers, shakes and creams, respirators and artificial feeding tubes. Friends called less and less.
“It is not easy to accept a disabling disease like ALS. I don’t judge those who fail. Illness is a mystery that in the relationship with others leaves no room for pleasantries. I’m not a cactus; I don’t sting! In any way people are embarrassed,” explains Francesco in his computerized (metallic) voice.
Paola does not forget the 39 days when Francesco was hospitalized in intensive care, after having decided together that a tracheotomy was the only technique that would allow him to survive.
“On August 30, 2017, I spontaneously decided to undergo a tracheotomy,” says Francesco. “Acceptance meant life, while rejection meant death. I was aware of what my family and I would face.”
In the following weeks, Paola saw him for a few minutes a day. Francesco could not communicate with anyone.
“In a room of immobilized people, the only sounds were the beeps of the machines. Listening to that original symphony, I started daydreaming, hoping to transform my dreams into projects. I repeated to myself that every day was one more day to dream, but, above all, to love.”
Francesco continues to pursue his dreams and projects. He organized a conference about fighting organized crime at the University of Lecce, a city in the South of Italy. That day, the auditorium of 800 seats was packed, while onstage academics, prosecutors, judges, journalists and priests share their commitment in this fight for justice.
He writes books “not with my hands, but with my heart,” he says, since it is the optical reader that transforms the signals sent by his pupils into words on a computer screen. Meanwhile he began a blog, he writes to friends near and far, and he is very active on social media.
He also composed a song performed by a choir in various television shows, and a 24-part column on the Sunday Gospel on his diocese’s website.
“It is not a splitting of personality, but an awareness that the identity of a sick person is not equal to the weight of his illness,” he writes, while his home is filled with new and old friends and many, many volunteers. “We are not alone. Our life is full, rich and happy,” says his wife Paola. “Our happiness has a different form, it’s true, and it’s worth it.”
Francesco depends entirely on Paola and the nurses who take turns assisting him, while visits to hospitals are increasingly frequent.
“Have you ever thought about euthanasia?” This is a question that is not new to him, and he is well prepared. “On this issue the pages of the newspapers are filled, and the television lounges are populated, but people often forget the immediate and concrete needs of the thousands of sick people who cry out with all their strength the will to live.
“The declared purpose of euthanasia is to avoid suffering and avoid diminishing the dignity of the person. To counter the suffering, there are excellent drugs; while the discourse becomes more complex regarding dignity: what is it that really diminishes the dignity of a person?”
Francesco asks, “Is dying of old age more dignified than dying of cancer? Dignity is an intrinsic trait of the human person, no matter the age or state of health or socioeconomic status. Nothing takes it away from us, not even the worst concentration camp or the worst torturer.”
He continues: “My life hangs on threads and tubes that feed me and make me breathe. I am paralyzed, and I cannot express my opinions, but why should a mother or a doctor assume the right to decide whether a human being should live or not? Who can tell us what a human being even with severe handicaps can give to his family or in society? Who can say what the boundary is between killing someone to avoid suffering or indulging the selfishness and influence of a society that wants us to perform at our best and decides that a human being is a burden.”
Francesco is unstoppable in his hymn to life. “These are problems that must be addressed. I can say — because I experienced it many times — that you are left alone, and that the institutions apply protocols that look at your body, but not at the human person as a whole. Illness can take away your ability to move or your self-sufficiency, but not your identity as a person.”
Francesco, who also founded a nonprofit organization, is approaching the terminal phase of his illness. He can hardly communicate anymore, and yet Chiara, a friend of his, tells me: “Those eyes speak beyond words, and there is a communication that goes beyond, which knows how to give you vitality, because Francesco has not stopped loving and laughs maybe just folding a little bit of an eyelid.
“He is immobile, but he is a free man.”
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