Resisted Suicide

Mario Melazzini's Beautiful Life with ALS

Amyotrophic lateral sclerosis (ALS), a debilitating and usually fatal neurological disease, is a common justification for seeking euthanasia in Belgium and the Netherlands, where it is legal. In Oregon, where assisted suicide has been legal since 1997, about 8 percent of these deaths are of patients with ALS.

It is a terrible disease. It wastes the muscles of the legs, making victims unable to walk; of the arms, making it impossible for them to help themselves; and then of the diaphragm and chest wall, making it impossible to breathe without a ventilator.

But not everyone with ALS is suicidal.

It would hard to find a better example of this than the new chairman of the board of Italy's leading body for regulating pharmaceutical products, Agenzia Italiana del Farmaco (AIFA), Mario Melazzini.

Melazzini was appointed by the Minister of Health in January, after his predecessor resigned over conflict-of-interest issues. He was an unusual choice. For about 20 years, he practiced medicine as a cancer specialist. But for the last 14 years, he has suffered from ALS. He has to use a ventilator to breath properly; he needs a wheelchair for mobility; he is fed intravenously; and he needs constant care.

Despite all this, he has ticked off an impressive list of achievements. He is president of Aris, the Italian research foundation for ALS; he is a former councillor for health and research in the region of Lombardy; and he is the author of five books about disability, euthanasia, and his own wrestling match with ALS.

Hard-Won Optimism

His latest book was published late last year, Lo Sguardo e la Speranza: La vita è bella, non solo nei film (The look and the hope: Life is beautiful, and not just in the movies—unfortunately, not available in English). The title, containing a sly reference to the Oscar-winning Italian film Life Is Beautiful, sums up his own philosophy of life: "The only incurable thing is the will to live!"

This optimism has been hard-won. In the months after he was diagnosed with ALS in 2002, he felt that his life was not worth living. He was becoming completely dependent on other people. He had lost weight and could eat and drink only with great difficulty, and later, a PEG (percutaneous endoscopic gastrostomy) tube had to be inserted into his stomach to feed him. There had been medical crises.

One day in 2003 he typed "assisted suicide" into a search engine and found Dignitas, a Swiss clinic that helps foreigners to die in Zurich. He rang them and made an appointment—but eventually decided not to go. He began to realize that life was too beautiful and precious.

His "conversion" influenced a heated debate over assisted suicide in Italy in 2006. Another man with a degenerative disease, 61-year-old Piergiorgio Welby, was campaigning for the right to die. As a spokesman for victims of neurodegenerative disease and as a doctor, Melazzini campaigned for the right to life.

Melazzini's Miracle

Melazzini's Catholic faith has sustained him throughout his illness, and he has been especially helped by reading the Old Testament book of Job, the just man stripped of everything he loved and owned. But his expectation of miracles is modest; rather than hope for the miracle of a cure, he rejoices in the miracle of acceptance:

The miracle is not walking, drinking and many other things that I can no longer do. The miracle is serenity and an awareness of my limitations. I can't ask for anything more than what I had. I thought that I would be dead after a few years of illness, and instead, here I am, alive and active. . . .

The miracle happened: I opened my heart. I was locked into myself. Now I am open to myself and this allowed me to open up wide to others.

His Christian outlook gave him hope, for it taught him that even with his immobility, he was still free. "Hope," he writes in Lo Sguardo e la Speranza, "is a path that can lead to a better space. Pain and suffering, as such, are neither good nor desirable—but that doesn't mean that they are meaningless. And suffering can be contextualized and treated as a life experience."

Health for the Soul

He concludes the book with a remarkable idea: that sickness of the body can restore a sick soul to health:

In our day-to-day lives, all of us will meet suffering sooner or later, and not just physical pain, sickness and frailty. We ought to be able to treasure it, turning it into something valuable in our path through life. . . . And the disease can really become a form of health. It's healthy because it allows us to feel useful again for ourselves and for others, beginning with the family and including friends and colleagues. It's healthy because it helps us to realize that in life one should never take anything for granted, not even a glass of water sipped without choking.

It's an impressive story of a brave and wise man, though marred by his decision to split with his wife Daniela, who had cared for him and borne his three children. Last year he married a divorced woman named Monica, who had two children of her own, and whom he had met through the ALS association.

Remarriage after divorce is, of course, forbidden by the Catholic Church, so he and Monica were married in a garden by a local official. But in one of those baffling inconsistencies that bedevil our nature, Melazzini remains an enthusiastic Catholic.

Oh, well. Even heroes are human. •