Cyclically it comes back. About ten years after the death of Piergiorgio Welby, who suffered from a degenerative neurological disorder and who died upon request at a doctor’s hand, the bill on the “end of life” reaches the Chamber in late March. The focus shifts on how to die, instead of focusing on how to live with dignity. And whereas the involved families have to organize shifts to assist their loved ones day and night, we talk about euthanasia.
“People who live next to those who are fragile should be the ones to talk, rather than the experts”, Mariapia Bonanate said. Writer and journalist for Christian Family who has been looking after her husband struck by Locked-in Syndrome for the last ten years. This syndrome is also known as the syndrome of the bolt and the key to it has been lost. “Today we have a society that works to help people live, or to discard immediately those who do not match the rules our society has given itself: money, power, and well-being? There is a whole culture that goes against life. “What is certain is that suffering and pain should be discussed, “continuing the search for palliative cure, so as to give these vulnerable people ability to resist.”
There are many stories of courageous people. That of Maria Pia and her husband is full of love, a journey into the unknown, with “the Buterfly in a Diving Bell” who in 2012 found the strength to tell in I Am with You. The Mystery of a Suspended Life (Mondadori). It so happens that life has a before and an after, and nothing is as it used to be ‘‘before’’.
There are 600 official cases of people affected by this rare syndrome, which is often confused with the vegetative state, in Italy. “The apparent result is the same – she said – but there is a fundamental difference. A person suffering from Locked-in after a stroke at the basis of the cerebral tree, no longer have the gift of speech and cannot move any part of their body, not even a finger, they cannot breathe independently, yet they remain totally lucid. They see, hear, and understand everything, especially in early stages.”
This event turned their lives upside down. They were going to celebrate 30 years of marriage. “When it happened, my husband understood everything, and saw everything. In his eyes there was anguish of being unable to move and communicate.”
Love guided her. One year in the hospital to make everything in their power to rehabilitate him. Finally he became able to communicate blinking and often he was unable to do even that. But there was always someone with him. “One thing was important to tackle the disease, being an open family. In such a tragic moment, our doors were wide open, we were not alone. When you feel good you have to live well, open to others, but all sorts of things can happen in one’s life which can turn your world upside down. If you are inclined to having a network of relationships with the others, you can create a new life.”
Thus, when they recommend her to send her husband to a special structure, she does not accept. “It was right for him to remain the center of our family, as it used to be”. His room is at the center of the house, it overlooks the square. “A beating heart in which everything is built around, the brightest, with all the objects that have accompanied his existence left inside”.
Everyone felt anxious when they arrived home from the hospital. “I was crying and my 8-year-old granddaughter who was near his bed told me: ‘Do not cry Grandma, Grandpa is here’. It was a flash in the dark. There was life, although it was different”. We needed an entire network of solidarity and personal care, organized thanks to the determination of a family. “We tried to form a small community of nurses and volunteers. A small domestic church that gave us a normal life.” Whereas the public network was inactive that merely gave us the allowance for home care. “In France, for example, they provide you all the necessary nursing staff for this kind of syndrome.”
“When we love, we accept the mystery of a condition we do not understand.” Living with “the Butterfly in the Diving Bell” made her learn that life and death are intimately related. “My devotion to my husband gave me great strength and inner freedom. Living at his side, going wherever he is now, in loss, spoliation, gave me a dimension of eternal values, as if our personal privacy, our home, was filled with impalpable presence, which is present nonetheless. He threw open a new dimension of life. I feel all the unprotected humanity reaching this room.”