The former Undersecretary of State for National Culture Dario Loperfido He reflected on amyotrophic lateral sclerosis (ALS), which he was diagnosed with more than a year ago and which he made public midyear. The former Minister of Culture of Buenos Aires wrote a column in which he said in a very crude way: He described the physical changes he is going through, opened the door euthanasia and lamented that his five-year-old son would not remember that he was healthy.
“ALS turns you into a different person in the pre-death stage. I don’t think I’m the same anymore.”. I was a good debater and now I can’t speak well, I can’t walk well, I have no social life and everything is strange. My life was filled with physical and spiritual pleasures. Physical pleasures disappear: Your body becomes a prison and that’s what I miss the most. However, I can maintain spiritual joys. “Reading, writing, talking to friends, listening to music, watching films: all of this is still possible,” he wrote in an extensive column that appeared in the digital magazine this Sunday Seoul.
Lopéfido defined his illness as “Shit” and described some physical changes he is going through. “It took a year for ALS to ruin my foot. “It’s impossible to make it epic,” he admitted, describing the illness as “an unbearable commonplace.”ALS leaves no glamour. You walk badly, your voice becomes drunk and you eat with the risk of drooling (…) You no longer want them to see you eating and drinking. ALS brutalizes you,” he added.
Former official Fernando De la Rúa said this was due to the illnessd “You’re starting to want to hide”. “Except exhibitionist patients who sit in a wheelchair without being able to move anything and feel like they have to show it off as something normal,” he commented, defining this group as “people for whom antidepressants have a big effect; otherwise.” It is not explained that they want to display such destruction“.
Lopérfido said that in his case, one hand and one leg function “well,” which allows him to work “hidden” at home. However, he claimed that “a single leg that works is the same as nothing.” “So it takes two to run I hope that one disease follows another and we end up with the banal excitement of a healthy leg“, he said.
The former official, who is currently living in Germany, revealed that he lives alone and expects his condition to worsen. “The brain always remains, and it is the only organ that is worth it (…) When you have ALS, the only alternative to not turning into a plant in front of the TV is to expand your brain activity to the limit,” he commented.
At the same time he talked about it “Infantilization of the patient.” “People associate serious illness with speaking to the patient as if he were a child, under the frightening idea that this tone is a way of giving them love. But love cannot remedy such a physical catastrophe (…) Every time they talk childishly to me, I feel a wave of hate. Cultivating good is always unbearable, and when you have such an illness it is even worse,” he said.
On the other hand, the former director of the Teatro Colón also opened up the possibility of going there euthanasia. “You can’t choose to be born, but you can choose to die. Life shouldn’t be a chore.” I haven’t decided to use it yet, but knowing it’s available to me gives me relief“, he explained, assuring that euthanasia “is the most liberal of all deaths and much better than suicide, something very traumatic for those who are left behind.”
Finally, Lopérfido referred to his son: Theofive years old. “The thought of him not remembering makes me very angry The image you will have of me will be that of a sick guy with whom he shared things on a limited basis. There is no playing football, no walks, no going to the amusement park,” he reflected.
His son’s possible lack of memory of his father without illness, he admitted, “affects me the most, to the point that I considered euthanasia when I began to feel unwell.” “I wondered which was more traumatic for Theo: a dead father or a deteriorating father.”. We talked to my wife about it and realized there were a few things we could share and that it was worth giving it a try.
“I pay close attention to my decline and continue to think about it daily. Of all the torments that the disease brings me, life as a limited father is the worst and the one for which there is no solution. Writing calms me because I think that he will be able to read me when he grows up and I am dead,” he said.
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