With a clear hat and matching coat, María José Chamizo poses, eyes and mouth awake, about to get into a car at her brother's wedding. She goes alone. Her boyfriend is in the military.
Many years later, Santiago Sánchez and María José, Maru, put their heads in a place of vacation. "It would be a trip from Imserso," he observes in front of the photograph. She looks short hair with a soft orange tint. They have two daughters, four grandchildren and years of retirement ahead.
December 11, 2018. When he awakes from the fog of morphine, Maru's eyes are still there, expressive. Firm. Everything else has changed the Amyotrophic Lateral Sclerosis (ALS), a disease that progressively paralyzes the muscles until death. Two tubes are born from the arm and belly in a limp body that does not represent the 67 years it has. The grayness is stuck in the hair and the look. The tremor of the chin indicates that you want water (that is, to be sprayed on the lips, can not swallow) or to reposition it in the articulated chair.
-You want to live?
Santiago sits in front of her. Holds an electronic board with letters grouped in colorful backgrounds. Maru directs the glance and he tries to guess the sign to which his wife is pointing. Write on a screen:
-What do you want?
-I want to die.
The final e blinks on the blue screen. It obscures the small apartment of Aluche, a popular neighborhood of Madrid, where there are handsome children who watch from all the walls. Maru smiles only when the grandchildren come. "What he wants is for them to pass the euthanasia law so they can leave"explains Santiago
– Why do you want to die?
Maru shakes her head and shrugs her shoulders a little. The eyes rest on the blanket that covers it, the arms that slip away. That is, in the desolation that surrounds it. "Because I do not want to suffer", translates the device. "Living like that is not living."
On December 15, María José Chamizo died in a hospital in Madrid when her respiratory condition worsened, without fulfilling her desire to have her euthanized. The bill that seeks to decriminalize it is processed in Congress. "She died without suffering, but they did not help her, she wanted to leave long before," her husband said yesterday.
When she started to get stuck talking, she was a restless retiree who had fed hundreds of children in a public school in Leganés, a city south of Madrid. I swam several days a week. He never stopped traveling with his husband, already retired from his job as foreman of maintenance. That's four years ago.
Last Tuesday, four days before his death, the sound of his breathing was present, imperious. Santiago took a syringe from a transparent plastic bag with several cannulas prepared and nailed its contents to the subcutaneous route that infused morphine 24 hours. In March, he entered a residence (his house was installing an elevator) with a crutch. Three months later, he left in a wheelchair. Lately I spent the days watching soap operas, sometimes hectic. Change.
Since the diagnosis, he wanted to die. "At first he did not want to eat, as a means of leaving, but the doctors said it was going to be useless suffering and he let them put on the gastrostomy. [un tubo conectado al estómago para alimentarla]. More than that, she does not want to. "Santiago looked into her eyes, and she nodded, refusing to wear a respirator and a tracheostomy.
The cruelty of this ailment that builds a jail where there was once a body, causes that between 20% and 30% of patients request the suicide assisted by doctors or the application of drugs to cause the death, According to some studies in the Netherlands, one of the countries where euthanasia is legal. Fernando Marín, vice president of Right to Die Dignamente, says that the association calls many people with ALS, taking into account how rare it is (about 4,000 affected in Spain). "It is the most paradigmatic disease, in which the patient does not want to reach the end because he knows that deterioration and death are inevitable, he wants to be informed before he is unable to move and needs help to commit suicide."
The family presented the palliative care doctors at home with Maru's wish. "They tell you they can not do anything, we understand it, but we do not share it," affirmed Santiago. "When she suffocates, they will have to sedate her to finish it, I have come to think many times about raising morphine, helping her."
Maru called herself an grandmother, but she spoiled those grandchildren who made her draw a smile almost uselessly. Perhaps he remembered, with his mind intact and lucid, the vacation with them in La Herradura. The amount of tablecloths and curtains that she sewed for the daughters. Weekends in the village.
At night, when Santiago slept, I felt afraid.
"Political gentlemen, these situations that occur must be solved. I would like to see Pablo Casado [el líder del PP dijo que la eutanasia en España no era un problema] with a relative like that, to see what they were doing, "Santiago Sanchez, the husband and caregiver of Maru Chamizo, sick of ELA who wanted to die, is outraged.
The Euthanasia Law, the norm of greater social importance of the PSOE Executive, has enough support to move forward in Congress, but it needs Citizens to unblock it in the Bureau. Something that is in danger because of a socialist amendment to the palliative care norm promoted by the orange training.
The shadow of an electoral advance also threatens the attainment of a right that the immense majority of Spaniards supports. A support that grows over time. In 2011, 77.5% of citizens agreed to regulate a dignified death (CIS). In one of the most recent surveys (Metroscopia, 2017) the support went up to 84%.