«Euthanasia is not about political leanings»

 

In the words of the writer Jose Luis Sampedro, "death is the companion of life. We begin to die the day we are born and we need to understand how to make the most of it." The quote would suggest that this humanist would have had much in common with Bachelor's Degree in Multimedia student, Xavi Argemí, who has just published his own book, entitled Aprendre a morir per poder viure [Learning to die to be able to live], in which he outlines his personal experiences and thoughts on the subject, infused with a sense of joy and hope. As a child, Xavi was diagnosed with Duchenne muscular dystrophy, a degenerative disease characterised by progressive muscle weakness. Now twenty-five, his movement is restricted to his fingers and head, which means he needs assistance to carry out the majority of his daily tasks and is confined to a wheelchair. As he explains in his book, which marks his debut as an author, death and his own mortality are everyday realities which he has learned to live with.

 

In the words of the writer Jose Luis Sampedro, "death is the companion of life. We begin to die the day we are born and we need to understand how to make the most of it." The quote would suggest that this humanist would have had much in common with Bachelor's Degree in Multimedia student, Xavi Argemí, who has just published his own book, entitled Aprendre a morir per poder viure [Learning to die to be able to live], in which he outlines his personal experiences and thoughts on the subject, infused with a sense of joy and hope. As a child, Xavi was diagnosed with Duchenne muscular dystrophy, a degenerative disease characterised by progressive muscle weakness. Now twenty-five, his movement is restricted to his fingers and head, which means he needs assistance to carry out the majority of his daily tasks and is confined to a wheelchair. As he explains in his book, which marks his debut as an author, death and his own mortality are everyday realities which he has learned to live with.

It's something that some of my friends and family members have been saying I should do for a long time to tell people about the way I see life, but I've always been reticent because I don't want to be in the spotlight. The thing that convinced me was the thought that it might help people who find themselves in similar circumstances to mine. It all started with a letter I wrote to La Vanguardia expressing my support for palliative care in the debate about euthanasia. That led to me being interviewed for the TV3 programme, Planta Baixa, which, in turn, led to the Rosa dels Vents publishing house approaching me about writing the book.

Euthanasia is a treatment to bring about my death. And I want something else from medicine: to be treated because I'm dying. To put it another way, it's much better to invest in supporting people with what they're going through. Palliative care provides a much better response all round, both for me and for those close to me. It addresses the things people want: to feel adequately supported, to be free from pain, to allow nature to take its course and enjoy the life we still have. Euthanasia is not about political leanings, life and the right to live transcend that kind of discourse. To me, my objections to euthanasia as a solution are human, not political.

To enjoy the little things in every moment, to share projects with others, participate in everyone's joys and help ease their difficulties and sorrows.

I was thinking about people in situations similar to mine and the people close to them. And people encountering difficulties of any kind. I wanted to convey a message of hope and tell them that you can be happy despite any limitations or problems you may have and to learn to value the little everyday things that we often overlook.

Apart from daily personal care routines, I try to be as active as possible and focus on things that I enjoy: studying and working to finish my Multimedia degree, chatting with friends and, now, answering emails and social media posts from people who have read the book, family, etc. All very routine and at the same time very different every day.

Being with the people I love, enjoying their projects and sharing mine. I had a very happy childhood thanks to the family I have.

Family, friends, spiritual support and medicine.

There are four of us at home now: my parents, one of my sisters and me. They are my lifeblood, I need them all the time, both day and night. On top of the physical aids I have, they support me in every way. In fact, they are my arms and my feet. Apart from that, everyone needs company and psychological and human support.

I was always aware of my physical limitations but the functional loss has been progressive. As my falls became more and more frequent at school and at home, I became aware of being different. Little by little, I stopped being able to do things that other kids my age did: playing ball, climbing stairs, and so on.

We all have difficult times, but I've always managed to keep going. Even now there are still times when I wish I could be cured.

Christianity brings me hope and a sense of existence, the fundamental requirements for happiness.

I couldn't attend a traditional on-site university because of my condition. The UOC has an excellent reputation so I thought it would be a good option. Why Multimedia? Because I wanted to do something in the digital world and because I was drawn to the world of graphic design, which one of my sisters introduced me to.

Very good, overall. Especially because of people like Antonio Ponce, who has been my tutor for the majority of the time I've been studying and because of how easy it is to communicate with my teachers and classmates.

I don't feel sadness or fear but I do think about the difficult times that may come. But the fact that I've already been through some of it gives me some peace of mind. But death commands respect.