“What will change in my life after taking the test?”

The plan is as follows. Tomorrow, if you wish – it could be the day after tomorrow or the next day, perhaps in a month, some flexibility is offered – you are given the opportunity to open a window into your future on the front line of fortune. Listen carefully: you have the privilege of knowing whether and what kind of death you will die suddenly. Well, let’s see, maybe he will die. We can’t guarantee it completely, that’s true, but it shows good numbers. In one of every two simulations his life ends; In the remaining 50% you will live like everyone else. Explain that if you land heads, you will not die like the rest of us, even though you know that every death, like every fingerprint, is different. The instructions for this creepy game with allusions to South Korean science fiction do not say exactly when. Just like.

Unfortunately, the ability to quickly and unexpectedly remain on the operating table under anesthesia and analgesics in therapeutic doses while they try to implant a prosthetic hip, which broke after more than eighty years of running, is impossible. It remains only in stock slow, degenerative and painful option. Disgusting. We don’t have any time left in the warehouse either, so his death will start to warn you that it will come while you’re still young, put it in your thirties. It does not give up and will continue to deteriorate until it stops moving, remembers nothing, and is dependent on anyone for its basic functions. These are the rules, and here is the dilemma: will they want to know what they are doing so they can plan their time, or will they choose not to play when the dealer raises the cup?

Father Luis Aguilar Vera He died many years later, knowing that he would die. He took it Huntington’s disease (or chorea). Serious, progressive, irreconcilable, incurable neurological pathology. It is difficult to determine which of its symptoms is the most severe. Because there is antisocial behavior, irritability, paranoia, or a persistent bad mood that makes it difficult for others to stay; because movement disorders, convulsions, grimaces, and unsteady gait turned this disease into one of the hypotheses for the etymology of what is called in the collection “the dance of St. Vitus”; because there is progressive dementia, loss of consciousness and loss of identity. Neurological, serious, progressive, inexorable, incurable and also hereditary. An autosomal dominant variant, which, if Mendelian is far away, means that each offspring has a 50% chance of developing a genetic mutation on their chromosome 4. Male or female, does not matter.

“I didn’t take the test,” Louis says. According to the recorder, he says this at 1:31 minutes. All of the above is small talk; Greetings, a couple of compliments and protocol cordiality. This is the elephant in the room, why wait?

“I recently heard the people who inspired the film The Snow Society say that every time they are interviewed, the first thing they ask is how their friends’ meat tastes. This is also always a question. I regret the lack of originality in the approach, but the question is relevant. “I always answer with a question that my psychologist asked me: “Why are you asking yourself a question?” “What would change in my life if I did this?” – he explains. Maybe there is no need to move in conditions of uncertainty? Isn’t it human to want to know? Again, what would you do?

Louis had always made it clear that he preferred not to know. There are, of course, times when this is tempting. “I have very hypochondriacal tendencies, in which I have the feeling that I forget everything, in which I stumble. There are usually moments associated with change, stress and uncertainty. Click here. My brain has discovered a very effective way to scare me about anything in life. For example, I recently changed jobs, and at the moment I am calm, but at my previous job I was terrible and hypochondria, the sword of Damocles disease, weighed heavily on me. Indeed, if there’s one thing the anxious minds of the 21st century are good at, it’s turning the everyday into a threat. “There are days when I’m stressed, when I feel a little worse, and I think I’d like to take the test and have it come back positive and so I’d throw it all away; I mean all this about the system, about capitalism, about having to get up every day to go to the office. This usually happens to me during periods of uncertainty. But I deal with it well, I’m a person who never stops doing anything in life, fear doesn’t stop me, really. And what may sound like a cliché: “Let everything flow and nothing influence”, in fact, this does not happen.

Useful ignorance

“Despite the fear, I lead the life I want. This feeling of death following me has really helped me set boundaries,” he begins, explaining to those who checked the “I always prefer to know” option.

“It is clear that if it turned out “yes”, it would be bitch huge. I saw what this process was like for my father. But what if I get a no? I have a terrible fear that the test may come back negative and that this will change my lifestyle, which is heavily influenced by this threat. For example, I never left work too late because I always remembered that death could await me. 95% of people don’t realize they are going to die. This is a reality like a piano. For me, not being aware of death, in turn, means not being aware of life. I am very afraid that the result will make me believe that I am eternal. The scythe that constantly haunts me makes me aware of many things, sad and happy, and to be very determined,” he states, making it clear that he has decided not to know whether his life will become shorter or not, but that it will be full in any case.

There are things about Louis that are obvious. In my book of stories Chronicle of a Fate Foretold (Letrame, 2024) – profits from the sale of this book will be donated entirely to associations supporting patients and their families affected by this disease – makes it clear that psychotherapy played a fundamental role in their survival. Your essays are part of the process. His book is his life, which is perhaps The Huntington. It’s his father and it’s his fault. Being ashamed of a parent is a universal sin of youth. How to avoid this if dad still acts the way he does? “I was ashamed of my father. Every teenager does this, and if he still walks weird and screams every time he talks, imagine. And go deep into it.

“There are nights when I go to bed and start thinking about a very specific moment that weighs heavily on me. My father, already in the residence, when he could still speak, called me in a voice of sadness, driving me crazy, and asked when we were going to visit him. I don’t know what I said, but I’m pretty sure I answered incorrectly, that I was young and I wanted to be around. No matter how much I and the rest of the world tell me that this is all normal at this age, there is a man in a nursing home with a neurodegenerative disease speaking to me with a voice of pity. “It’s like a horror movie,” he says. Remember.

From all this guilt, punished more in the first person than in the third, he redeems himself by writing. There is no trial, not even for his mother, who separated from his father due to constant quarrels before the diagnosis was made; nor did his paternal grandmother, who knew what was going on before the doctors, already seem to have more confidence than the rest of the house. “My parents got divorced because they wouldn’t stop fighting. A year later, my father began to move strangely and went to the doctor. My mother always says that my grandmother was present at one of these conversations and she said: “Son, tell me that this is because of your illness.” My grandmother knew all her life that there was a genetic load. “He knew it and never said anything.” He turned his sword away from Huntington, as he himself admits. All this grief is logical, but the pain does not prevent Luis from having good vision. “My poor mother suffered a lot and even told me that if she had known that I was sick, she would not have divorced. But this is not true, my mother should be able to do whatever she wants. If you have to get a divorce because your husband yells at you or for any reason, then you get a divorce. There is always guilt, but you don’t have to mentally carry within yourself something that you didn’t even know and couldn’t know.

Future, present

Louis wants to be a father. This obviously involves decision making. Always, but in his case more, because he wants to be a father, but would not bequeath a sentence to his son. He assures that Huntington is a taboo not only outside the family, but also within the family. But why, when other neurodegenerative diseases such as ALS have managed to gain a place on the public agenda? “I think there is a part that has to do with what the disease is in the eyes of others. For better or worse, a person diagnosed with ALS will soon end up in a wheelchair. Huntington’s shows very strong and slow degradation in a seemingly normal environment. My father kept going downstairs to play music at the bar downstairs. “A person who has ALS is considered sick, but a person with Huntington’s disease can pass for crazy or drunk,” he said.

For some time, he was actively involved in the Korean Association of Spanish Huntington’s Disease (ACHE) and traveled to study the reality of other people. And he saw that silence, when people look into the distance, inside every house, is still a common occurrence. In fact, mostly ordinary. “Well, tomorrow a flowerpot might fall on your head and kill you,” is part of the argument. Something that needs to change. Louis writes, turns our heads and makes us watch.