The third Public Account of President Gabriel Boric last Saturday, June 1, was heard through radios in vehicles, televisions in homes – it had 70% visibility – and several people also followed it electronically. Perhaps many heard it in fragments. In the house where Susana Moreira (40 years old, Parral) and her husband Jorge Rebolledo (41 years old, Santiago) live in the commune of La Florida, in the south of the Chilean capital, they listened to the two hours and 45 minutes in the that the left-wing president spoke. They were attentive to the moment when Gabriel Boric mentioned his name in the speech. “I have told you before that as president I receive letters from people from all over Chile. One of them was from Susana Moreira, who wrote to me to share with me what it means to suffer atrocious physical pain every day due to muscular dystrophy that does not allow her to have a decent life. In her letter, Susana asked me to authorize her assisted death,” said the highest Chilean authority when announcing that the Government will give urgency to the euthanasia and palliative care bill that has been stalled for more than two years. in the Senate. “Approving this law is an act of empathy, responsibility and respect,” said the president.
The latest Cadem survey, published after the Public Account, shows that 70% of respondents are in favor of euthanasia, but 66% believe that it is “little or not at all likely” that a law will be enacted to legalize it in Chile.
Susana Moreira receives EL PAÍS in the same room where she listened attentively to the president’s speech two days ago. The same tidy room where she spends most of her time, lying on her double bed in front of a television. She was diagnosed with shoulder girdle muscular dystrophy when she was eight years old: “It is a disease that affects me from the waist up and from the waist down, it affects all my muscles and internal organs. I have difficulty breathing, swallowing and a lot of weakness in general.” Her parents realized that something was happening because her daughter fell a lot: “They pushed me a little and I collapsed, she had woolen legs,” she remembers.
It has been a disease that progressively and violently left her unable to walk and with unbearable pain in all her joints. At the age of 12 she moved around leaning on the walls, at 18 she started using a wheelchair and she received physical and psychological therapy at Telethon, the charity founded by Mario Kreutzberger. Mr. Francisco, to help children and young people with motor disabilities. In Parral he began to study pedagogy in Spanish at the Bolivarian University, but he only stayed for a year because he found himself unable to continue. She moved to Rancagua so that her mother could take care of her, because she could no longer dress, bathe or cook alone. She was told that she would live to be 30 years old. The depression of those years hit her through reading it, taking Harry Potter as a faithful companion: “The fact of being able to imagine and immerse yourself in books is super healing, regardless of the theme,” he comments. To this day the world created by JK Rowling surrounds her. On sad days she likes to have movies on hand. While she gives this interview she drinks cappuccino with a bulb in a fantasy saga-themed cup. By her decision, in the room she shares with her husband there is no decoration, only a small sign with the address 9 ¾, which leads to the world of magic.
Almost reaching the age of 30, Susana Moreira had many certainties, one of them was that love would not present itself: “When Jorge appeared I had already closed my possibility of loving.” She had no idea that a text message from Fotolog in 2008 could ruin her plans: “He appeared and entered like a wrecking ball (…) I told him not to fall in love with me because he was going to die on me.” . Jorge, who works as an auditor telematically, accompanies her sitting on the bed during the interview, listens to her, fixes her hair when one of her locks falls on her face, and brings her a glass of water. . He also complements what she says: “We are all going to die at some point. Some before and others after. “Her telling me that she was going to die didn’t change how I felt about her.” And he adds about the 16-year relationship that he has had with his wife: “I don’t regret it, it has been super nice. Obviously there are difficult moments, but every couple has their problems, ours are health problems (…) Being with Susana is super pleasant because of her attitude. When you talk to her you forget that she has an illness. She is almost never down or complaining. She is a very luminous person.”
Susana Moreira says she lives a happy life, with days and days. Days with more energy and days when she just wants a hug from her husband and for a movie to play. Harry Potter background. Whatever day it was, death always follows your thoughts and, more than death itself, the way in which you will experience that death: “Euthanasia for me means the certainty of not having to die slowly and with a lot of pain. I am super aware of everything that is going to happen to me later, at the end of the illness I am going to stay trapped in my body. When I can’t move my hands, much of what distracts me and what today allows me to continue living with courage, will no longer be there. At that moment I would like to opt for something that would not make me suffer more, I do not want to live through machines (…) I want to live as long as I can do so with dignity,” comments the woman who follows her hours through her phone, with whom you talk to family and friends, with instagram, where she has a beauty supply store (@amarteescuidarte_store), and also entertains herself with video games.
During the pandemic he was infected with Covid and it became clear to him that he did not want to die: “Covid made me aware of how terrible it was going to be (…) I couldn’t breathe and that feeling that you were going to die of suffocation with your own fluids is horrible. I would not want that for myself or for any other person who is sick or for their family members.” Jorge supports her: “She has been preparing me for this decision and I accept it, because worse than seeing a person die is seeing a person suffer.”
Concerned about a painful death, she sent an email to President Gabriel Boric in 2023 to tell him her story and ask him to legalize euthanasia. “I tell Susana that what you ask of me is not within my powers, but in your name and on behalf of so many others I invite this Congress not to avoid this debate,” Gabriel Boric responded in his Public Account. “I knew that he was going to respond to me in a human way, that maybe he was going to say no, because it is not within his powers, but I knew that he was going to do something to mobilize the law (…) It was very It is exciting to hear it because the voice of many sick people is no longer a silent voice,” he comments and says he hopes that the project that is in Congress will become law: “The discussion is difficult, but I am confident that the parliamentarians will put them in our place.”
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