This article is published in issue 28/29 of Vanity Fair on newsstands until July 19, 2022
“Do you know this is the first time I’ve said this?” The most puzzling question is Mina Welby, more or less in the middle of our meeting. And it surprises me, not only because she is a woman who tells the battle of her husband Piergiorgio for the end of his life for over 25 years – suffering from muscular dystrophy, in 2006 he asked (and obtained) to be helped to die – but also because he has recently turned 85. His white hair jumps at every laugh – and there are many – as he tells that he continues to travel around Italy for the Luca Coscioni Association, of which he is co-president, and to respond to dozens of emails, letters, WhatsApp, which he receives from a submerged multitude of Italians who ask for information, advice, comfort because he is in a desperate situation, or has a family member who is. In 2022 there were 94 people: one every two days.
Do you ever get tired?
«Now I am turning less than I used to. When Marco Cappato told me last year that in three months he wanted to collect 500,000 signatures for the referendum on euthanasia, I didn’t answer, I thought: he’s crazy. Then seeing so many young people who bring their parents to sign, he fills the heart ».
The referendum reached one million and 200 thousand signatures, but was then rejected by the Council.
“It was a disappointment. But we have registered a turning point: dying was a taboo, today no longer ».
Do you ever think about his, the end?
“Oh yes. Everyday. It’s a habit my parents gave me. ‘
Or?
«Every morning they told us: this could be our last day, we must be careful and behave well. It was not a sad thing, but a pragmatic one ».
So for you, hasn’t death always been a taboo?
“Exactly. And I’ve been close to it twice before. One as a child, in ’46, for tonsillitis: antibiotics were not widespread, and I had a very high fever for days. My mother lit a candle: perhaps, soon after, the angels would come and take me to play in heaven, she said. I fell asleep peacefully. The next day I was out of bed ».
The second time?
«It was January 1979, I had already met Piergiorgio. My belly was swollen and I was in great pain, at the hospital they told me everything, before I was pregnant then that I had attempted an abortion. Instead, I had internal bleeding from an ovarian cyst. They took me to the emergency operating room. There I felt a sudden calm, I was light, painless. If dying is like this, it’s not bad. ” He laughs.
In short, he knows how to live in the present.
“All time. Piergiorgio did not want to marry me, he said: I have dystrophy. But I don’t marry dystrophy, I marry you! I answered. At first I thought he didn’t just want to go to church, and I had proposed the Municipality… ».
Instead in 1980 you get to the altar. Did you both want the religious rite?
«He had a spirituality all his own, for years a priest, Don Pugliese, came to our house with whom he talked about philosophy. I, on the other hand, have attended church since I was a child … Excuse me, now that I think about it, maybe I risked dying again ».
The third.
«I had to bring letters from Rome to the Mother General from certain teaching sisters in Czechoslovakia. There was the Iron Curtain, it was the early seventies, I was 35 years old. I had them written on the lighter airmail paper and sewed them into the bra. ‘
AND…?
“At the departure was this Soviet plane, the Tupolev, which was by far the one that had had the most accidents at the time. Crazy air pockets: we had a really bad time ».
Instead?
«I arrived at my destination, I handed over the letters, plus lipsticks and tights so that the nuns could” dress up “and escape the controls of the Communists. Then, on my way back, luckily they didn’t stop me: I also had a bottle of vodka in my suitcase, to take to the nuns of Rome… ».
Like a spy: he didn’t think of quieter things, a family …
“Well no”. Pause. “I’ll tell you something I’ve never said. I entered the convent at the age of 21, and since middle school I have felt that I wanted to take vows ». He laughs.
Was it a nun?
«Yes, Franciscan teacher, for twenty years. That’s why I went to Czechoslovakia. And I loved my students very much, I was happy, but I understood that something was wrong… ».
Did he have doubts?
«No: certainties, but not orthodox. For example, in catechism class I spoke about the creation of the world. Not that of Adam and Eve, but of Darwin. My pupils told me: “But how?”. I was taken back ».
And what happened then?
“I understood that living religiosity like this did not make me reach the people I wanted to help: life in the convent was too comfortable for me. They gave me the opportunity to leave the community for a year, after which I would have to choose. I haven’t come back. ‘
How soon did you meet your husband?
«In 1978. I had started attending the Sert, in Rome, because there was a huge emergency: drug addiction. I worked with Don Mario Picchi who welcomed the boys in a center where the police could not enter, because it was in the territory of the Vatican. I have helped many to detox, with some it didn’t work, with others it did. One of these was Piergiorgio Welby ».
So isn’t the story true that you met by chance in Rome because she got lost on a trip?
“No. That’s a fable invented by Piero, who was a romantic. I met him in the hospital, at Villa Betania ».
How did Piergiorgio detoxify?
“He had been at the San Camillo for ten months, but when he got home he wasn’t out of it. I went with a psychiatrist for years, every Saturday, to take 42 vials of methadone, 6 a day, which I did for him. Then once he said to me: Aren’t you tired of going every week to get these vials? And I replied: are you not tired of taking them? We decided that I would help him. From week to week I replaced with a little physiological water, without letting him know. In five years he has gotten out of it. And does he know what he was saying to me? ».
What?
“Why don’t everyone do it?” “But you had a reason,” I replied. And he: “And what reason did I have?”. And I: “Maybe because we went fishing, do you remember? We took photographs, organized exhibitions, listened to the radio: we were together ”».
His love saved him not once, but twice.
“When in the end he couldn’t take it anymore, he had the right to say enough. Article 2278 of the Catechism of the Catholic Church provides that treatment can be refused if it is no longer needed and creates only pain, and the sick person does not want to cause death, but “accepts that he cannot prevent it”. He had a plan: give me all the Tavor, take off the respirator and go to the kitchen. In the meantime I am dying ».
What was it like to hear that request?
«I was going crazy, I told him it was impossible, I would have been a murderer. But he insisted: “No, you would just do me a great pleasure.” With the Luca Coscioni Association he then expressed his desire to die. Marco Cappato started going to our house, at the time he was a MEP in Brussels. I had to call him every day and ask him if he had found “the potion”, as Piero called it. But some Belgian doctors explained to us that no medication was needed: Piero could have been asleep and disconnected from the respirator. At the time, however, in Italy it could not be done ».
Thanks to the Welby and Englaro cases, the 2017 law on the end of life has arrived. Thanks to the Dj Fabo case, the sentence of the Constitutional Court of 2019 arrived, which paved the way for assisted suicide, which Federico Carboni used for the first time a few weeks ago. The progress is there.
«Yes, however, around Federico there are many cases in which deep sedation is used, in fact, and it is not always known how long it takes to die a sleeping person who no longer eats. And it is a pain for all the loved ones of him, he is not human. I still have the chills thinking about Fabio (Ridolfi, quadriplegic and who communicated only with the eye pointer, like Welby, who, although fit for assisted suicide, was unable to use it and died after hours of sedation, ed). In those days I was unable to speak to anyone, I did not write, I did not sleep, everything weighed on me, I felt a very strong pain: I relived Piergiorgio’s drama in the last few days ».
Have you thought about stopping?
«After the cases of Fabio and Federico, I thought about it. But then I think back that on the last day Piergiorgio gave me the password of his blog, The Calibanand that while he was dying he gave me a mission ».
He said he didn’t cry when he died.
“I was happy that he had finally made his wish come true. When she had a respiratory crisis in 1996, she was begging me: “Mina, help me!”. I had understood that she meant to call the ambulance. Only later did I understand that it was already the plea to end it. Because from there he came out tracheotomized and bedridden for ten years. I asked for forgiveness, but he told me I was the only one who never let him down. It was a great, happy farewell. ‘
How much had she cried before?
“Always, the last week. He ordered me not to, I denied it. “But you have red eyes”, “I cut the onion”. The next day he no longer scolded me. But, he said: “Cut a little too much onion …” ».
Does he still live in your home?
“Yes, I sleep in the bed where he was. I still have all his things, the paintings, the pants… I didn’t have the courage to think about what to do with them, we have no children to leave them to ». Pause. “We talked about it. Please, can we not do them, he told me, that they then inherit my dystrophy? I had reassured him: anyway I already have a child, it’s you ».
He talked to many: how do you make it clear that those who, in those conditions, choose to die, do not despise life, but love it more?
“Once Senator Paola Binetti asked me how I could have let my husband die.”
What did he reply?
“That she wasn’t there before, when Piergiorgio had detoxified, was a photographer, painted and exhibited. Or when she could no longer raise her arms, when she had to tap the computer with a stick, when she missed her voice … The good and the bad in life. Everyone has only ever seen that man on TV who said he wanted to leave ».
THE BATTLE FOR THE END OF LIFE WHAT CAN YOU DO IN ITALY? The Luca Coscioni Association asks for a law on the legalization of euthanasia and assisted suicide. While in Italy active euthanasia is a crime, and the related referendum has been blocked by the Constitutional Court, assisted suicide is allowed only on the basis of the criteria of the 2019 ruling of the Consulta on the Cappato / Antoniani case. The suspension of treatment – understood as passive euthanasia – is also guaranteed by law 219 of 2017.
THE CASE of “MARIO” “For the first time, a person requested and obtained to resort to assisted suicide based on the criteria of the 2019 sentence”. Filomena Gallo, national secretary of the Luca Coscioni Association, explains why the case of Federico Carboni, known as “Mario”, is a watershed case. «Carboni, defended by the Luca Coscioni Association, however, took two years», continues Gallo, «for this we need a law: to guarantee certain times».
WHICH LAW? «The current text excludes from access to medically assisted suicide patients who, despite possessing the required requisites, cannot self-administer the lethal drug and who are not kept alive by life-sustaining treatments (such as cancer patients). And it does not provide guarantees on timing, forcing sick people to go to the courts again. We need a new, amended text ».
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Source: Vanity Fair
