One autumn afternoon, on November 19, 2020, Ramon Grau, a good friend of my uncle, president of the Association of Independent Media of Catalonia (AMIC) and director and journalist of the TOT mèdia group of which the local newspaper TOT Sant Cugat is a part, came to interview me on the occasion of the recent publication of my book. And why was a media outlet from Sant Cugat interested in interviewing me? Well, the interest comes from the fact that I am a former student of a school located in Mirasol, a municipality in the area: La Farga, where I spent my entire school years.

The interview was very pleasant, like a conversation between friends, but at the same time with great professionalism. Ramon came well prepared: a copy of my book underlined and full of notes, some sheets with questions, a blank notebook with a pen to jot down my answers, and a mobile phone with the recording app ready. With all this, he acquired all the material from which the interview and article emerged, which I share with you below. Thanks, Ramon! Conversations like this are part of the little things that make life wonderful.

Interview TOT Sant Cugat – Ramon Grau – November 19, 2020

Xavier Argemí, who suffers from Duchenne muscular dystrophy, has published the book ‘Learning to Die in Order to Live’

Despite suffering from Duchenne muscular dystrophy, an incurable degenerative disease that makes him live in a wheelchair, Xavi Argemí (Sabadell 1995) is studying multimedia at the UOC. He was a student at La Farga school for twelve years and now publishes the book Learning to Die in Order to Live, a hymn to life by sharing the little things that make it wonderful. A book that is becoming a bestseller and helps us value what we have.

What would you say to young people like you, without your “circumstances” but with problems like being independent or finding a job?

We must value what we have, not what we can have. It is necessary to differentiate the problems that are the challenges that life puts before us and that we can or cannot solve, from the circumstances; which is what we have and cannot change. My problems are finishing my degree, working, my circumstances are the disease, not being able to move, eating with a feeding tube and depending on others. We overcome problems and do not dedicate our energies to circumstances that we cannot change.

In the book, you talk about euthanasia, which you have never considered, and you say that you want to “Live” in capital letters and make a firm defense of palliative care that has allowed you to build a meaningful life.

I do not want to suffer or make others suffer, medicine is very advanced and palliative care supports me and has helped me a lot, as well as my family. They support me and give me physical and mental well-being; enjoying a glass of water, a conversation, a Barça match, a sunset; the little big things in life.

You have been through surgery several times, until one day you said enough.

I started having crises and choking, I saw death near and before an intervention, tracheotomy, which meant not being able to speak, I decided not to do it and contacted a palliative care doctor to be able to stay at home with all the medical support and means that would give me the maximum possible well-being.

People say that you have never wanted to inspire pity, that you have sought normality in the eyes of others.

At home, I have always experienced it this way, my parents, my whole family, and friends have always made me feel normal, and that has given me hope and positivity to overcome the difficulties of day-to-day life. My parents have never hidden anything from me about the illness, but with a positive tone. Although we often talk about death, they have always made me see the kind side of life. We are a deeply Christian family, and faith helps me a lot.

Acceptance and sharing are the opposite of frustration. In the book, you make reflections that are more typical of someone who has lived a whole life than of a twenty-five-year-old.

Because the illness has accelerated in recent years, and I have had to face it, this has made me realize that happiness is knowing how to enjoy what we can do, without thinking about what we cannot. We must give thanks for what we have and what we can do, instead of complaining about what we do not have. When you accept your limitations, that’s when you feel freer.

One of the great diseases of society is anxiety, depression, unhappiness…

I believe that happiness is also not focusing on yourself but on what you can do for others; sharing, celebrating their joys. We all have problems, and what is needed is to overcome them. My parents, educating me to die, have educated me to live fully. We must look at the positive side, especially focusing on others. To be happy, it is not necessary to travel to the other end of the world; we can enjoy the small things of day-to-day life. We must create a better society; we have seen this with the pandemic.

You often talk about Barça, Txarango, Manel. Does music help you a lot?

For my saint’s day, my parents gave me tickets to see Manel at the Teatre Auditori de Sant Cugat, and I enjoyed it so much. Music is life, it is joy, refuge, and helps us to travel. My grandmother always said, “whoever sings scares away evil.” Txarango one day made a video call to me, and so did Pep Guardiola, they are great gifts! Like nature, animals keep me company.

You are from Sabadell, their parents from Sabadell and Terrassa, and you studied in Sant Cugat and live in Matadepera, with spectacular views of the Vallès.

Yes, I have taken a photograph every day of the year of the sunset over the Vallès, always from the same place and at the same time. Three hundred and sixty-five photographs, the images are like life, which has many colors and shades, some days are gray, some bright.

Your grandfather always said: “My God, one more day of understanding than of life.”

Yes, being able to reach the end with full lucidity and well-being. I am receiving many messages from people who thank me for the book, people who have lost a child, elderly people, teachers… They tell me that when they have a bad day, it is worth reading it. Just helping one person, I will feel satisfied.

Well, in a few days, it has already had three editions; it is an inspiration for many, especially for young people. It appears on the bestseller list alongside President Puigdemont, who, by the way, tweeted: “Today I finished reading it, but I will meditate on it for a lifetime.” Many of us will, and we thank you from the bottom of our hearts.

Source: https://www.totsantcugat.cat/actualitat/societat/xavi