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Ten years ago, before her body stopped responding due to a degenerative and incurable disease, María Benito fully complied with the healthy living manual: she got up at five in the morning to exercise outdoors, she went on a bicycle Wherever he went, he rehearsed typical dances, swam regularly, played volleyball, competed in 100 and 400 meter races in the Olympics at his job, favored fruits and vegetables, avoided fried foods and ultra-processed products, did not drink, nor smoked. and stayed up late at five hundred.
But neither knowing how to eat nor living on the move freed her from amyotrophic lateral sclerosis (ALS), a progressive and fatal muscular paralysis that affects four out of every 100,000 inhabitants.
First there were palpitations in her left arm, then some cramps and tingling, and then helplessness: one day she was not able to lift the shopping bag, and after a few months she could no longer open her purse to pay for the bus;
One day she did not have the strength to open a filing cabinet and soon it was impossible for her to reach out her arm to touch her back.
Even buttoning her clothes became an ordeal.
She was told it could be stress, then a doctor assured her she had Parkinson's and recommended acupuncture and tai chi sessions.
But there were no improvements.
And María Benito—65 years old, Huancayo—was irreversibly giving up the spark of life: weekend picnics with her children and grandchildren;
to karaoke nights;
to sports days;
even to her work, as administrative staff in a municipality, which kept her active;
But above all, her view of her things changed.
How else could it be if your body suddenly becomes rigid and you depend on others for absolutely everything.
How do you face such an abyss?
Who to complain to and what to find meaning in.
“I have tried not to fight the disease.
I had to learn to accept what I was given,” she says in one of María Benito's notebooks.
Six years ago she lost her speech and communicates through her eyes, thanks to an eye tracker that encodes what she wants to say with the help of a keyboard.
It is a hot February afternoon, in the nursing home that his children rent him in Lima.
María Benito, with ash-colored hats, looks at us intently.
She is semi-sitting with her laptop on and covered by sheets.
On her walls there are messages of affection, medical instructions and her routine that includes many pills, but also Turkish soap operas and several hours of rock and ballads.
She had a vegetable soup with beef for lunch, in the morning she had oatmeal, seeds and an egg white, and mid-morning she had a fruit juice.
They liquefied everything and passed it through a tube connected directly to her stomach.
She lives with three tubes: a cannula placed into her windpipe to provide an airway and another directly into her bladder so she can urinate.
At this point in the disease, on the verge of 40 kilos, everything is a difficulty.
The only thing that ALS has not taken away from her has been the fullness of her consciousness.
And it is with that single corner of freedom that María Benito has taken on the noblest of her struggles: to end her suffering and leave in peace.
Tables that María Benito and her family use to communicate.SEBASTIAN CASTAÑEDA
But in Peru, where pro-life discourses are rooted and euthanasia is a crime, they encountered innumerable obstacles in the justice system.
At some point his family studied the possibility of traveling to Switzerland and Colombia, countries where assisted suicide is legal.
However, they did not materialize.
Then, a woman with a similar condition that Benito finds inspiring came to carve: Ana Estrada, psychologist, polio patient since her youth, who set a historical precedent: she will be able to access a death worthy of her whenever she deems it.
Estrada contacted María Benito with her lawyer Josefina Miró Quesada, who was committed to the case from the first moment.
But they had an additional difficulty: Benito is losing his sight, she is finding it increasingly difficult to send messages, and her greatest fear is that she will not be able to communicate with the outside world.
She stay trapped in herself.
That is why they issued a document where she gave her daughter Ketty Solano the power to enforce her will.
After many setbacks and months of uncertainty, at the beginning of February, the Judiciary ruled in favor of María Benito stopping receiving life-prolonging treatments.
In other words, she will no longer be on a mechanical ventilator.
The argument was carefully put forward by her defense: “It is not the same as euthanasia, where a lethal dose is applied to immediately generate death.
It is simply that no one can be forced to continue with a treatment that they no longer consent to,” explains Josefina Miró Quesada, who at some point during the process gave her arguments in front of a court that had Jesus Christ as an image, in a virtual hearing.
After three losses (her grandfather and two close friends of hers) and having carried out the cases of Estrada and Benito, the lawyer has a different perception about death.
“Life is not about existing.
It's not that your heart is beating.
It's not breathing.
It is the life project of each person.
And she has to be endowed with dignity and a dignity that is not defined by third parties.
It is a right and not an obligation.
It is freedom,” she says.
New problems have arisen in the case of María Benito.
The ruling indicates that the only entity authorized to disconnect it is the Social Health Security (EsSalud).
The doctors at the Edgardo Rebagliati Martins Hospital have asked to be excluded from the procedure.
Given this, Ketty Solano, María's daughter, has requested that it be carried out by a trusted doctor, after sedation.
But until the closing of this note, EsSalud has not offered solutions, nor has it publicly commented on the issue.
María Benito in her room.SEBASTIAN CASTAÑEDA
Outside María Benito's room, during a pause, Ketty breaks down.
She understands and respects her decision, but it is still difficult for her to assimilate that very soon she will have to say goodbye.
She's been more sensitive lately.
She clings to the peace that her gaze conveys in recent days and to the meaning that she has found in her destiny: “She feels that from her case many things are going to change for people.” who suffer and desire the same thing.
She repeats that this is why she came here,” says this woman with thick glasses, only seventeen years younger than her mother, who wears a dream catcher on her right wrist.
When asked a question, María Benito takes a while to respond.
A few months ago she had an eye leak and every letter is difficult for her.
—What is the most beautiful thing that life has given you?
—My children are the most beautiful thing.
—What is life for you?
—God's greatest gift.
—What do you wish for your family?
—Let them strive to be happy.
Happiness does not fall from the sky nor is it around the corner.
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