On this occasion, I want to share with you an interview conducted by the digital media Aceprensa, led by Luis Luque in December 2020. In this conversation, we explored my life experience, marked by a constant struggle against Duchenne muscular dystrophy, a serious genetic disease. With the support of my family and other fundamental pillars, I have learned to embrace life with positivity and overcome daily challenges. Through this interview, I aim to convey the importance of solidarity and the value of preserving life and dignity in the face of discussions about euthanasia that are debated in the current social context. It is my hope that this conversation can inspire reflection and understanding of the complexities surrounding this issue.
Interview Aceprensa – LUIS LUQUE, DECEMBER 21, 2020
“Euthanasia causes tremendous pressure for many patients”
Xavi Argemí is 25 years old, but he savors certain details of life as perhaps only older people do. He enjoys quiet conversation, the contemplation of the sunset, the presence of emotionally close people, even when nothing extraordinary is said…
He suffers from a serious illness: Duchenne muscular dystrophy, a genetic disorder that usually begins to manifest at a very early age, and its symptoms range from severe muscle weakness to spinal deformity, severely affecting lung capacity.
However, Xavi does not live immersed in sadness. He has written a book: Learning to Die to Live. Small things that make life wonderful (Rosa dels Vents, 2020), with which he wants to share his experience and help people in similar situations. The young man from Barcelona confesses to being “happy,” and he is clear that those who, due to serious and incurable illnesses, face death head-on need companionship, not a push towards death.
Xavi has kindly answered a questionnaire sent by Aceprensa. He tells us that he was born in Sabadell and is the youngest of nine siblings. The degenerative disease “causes me to lose more and more strength: I went from walking when I was little to being in a wheelchair with very little mobility, but I can still move my hands a little. The most serious problem is pulmonary, which can be complicated by any bronchitis I catch. Currently, life expectancy is 30 years.”
— A condition of this severity can make anyone lose the joy of living. What has happened in your case?
— I have been fortunate to always have my family by my side. The support of my parents and their upbringing has been fundamental. They educated me in strength and, at the same time, naturally as one more. Specifically, my mother has always made me consider the positive side of life: not thinking about what I can’t do, but about the possibilities I still have, despite the limitations. In this sense, faith has helped me, valuing the small things we take for granted, and the support of friends and family.
— I know that, in addition to the book you have written, you are finishing a university degree…
— I am finishing a Multimedia degree at the UOC; I really like graphic design and look forward to starting to work. The idea for the book came because I thought that by explaining my life experience, I could help many people in similar situations. And now I see that I have helped many more people than I thought.
“The fundamental pillars of my life are family, friends, spiritual support, emotional, psychological, and medical; specifically, now, palliative care.”
— The disease has not prevented you from taking these steps. How are you coping? What have been your main supports to move forward?
— There has been a process of many changes regarding the disease in recent years. Now I need help to carry out tasks; however, technology has advanced a lot, expanding my possibilities to do more things, even with many limitations.
The fundamental pillars of my life are family, friends, the spiritual support that encompasses this, the emotional, the psychological, and medicine; specifically now, palliative care.
— To what extent have these helped you?
— They have improved my quality of life. For example, the back operation in 2010 was very tough, but it straightened my spine. If it weren’t for that, I probably wouldn’t be alive because I was shrinking more and more, and there would have come a time when my lungs couldn’t function properly.
— Have you ever experienced hopelessness, discouragement? How do you overcome them?
— Like everyone, I am human and have ups and downs. Every day I have to fight to get up again and think positively. I try to think about what I can do and what I can contribute to others. In my opinion, as we focus more on others, we become happier. I also believe that everything I do has a spiritual significance, that is, since I am a believer, I believe there is another life with full justice and happiness, and that Someone is by my side. Not everyone has faith, but we all have emotions that need to be learned to manage.
Taking life, cheaper than investigating
Xavi gives his testimony precisely in the days when the PSOE and Unidas Podemos are pushing full steam ahead, without considering the opinions of palliative care experts and ignoring the opinion of the Bioethics Committee of Spain, a bill regulating euthanasia for patients with incurable diseases. The Congress of Deputies approved it on December 17 by 188 votes in favor and 138 against, and if it passes the Senate, it must come into effect no later than April, although Vox threatens to file a constitutional appeal against the text.
But the voices from political opposition or specialized centers are not the only ones against it. Also, the voices of potential “beneficiaries” of a measure that, according to the government, responds to a “sustained demand of current society,” even though there is no data to support it, are rising.
Jordi Sabaté Pons, 36 years old, suffering from amyotrophic lateral sclerosis (ALS), is certainly not one who has demanded anything. In fact, he, who tells El Mundo that he cannot speak, eat, or drink, and breathes with great effort, has reasons to be wary of the pending law.
“I’m afraid that now, after this law, there will be a lack of investment in research, that ALS and other diseases will continue without a solution, and that the culture of death will be encouraged.” He is concerned that people in his condition will be “forced to die for lack of human and economic resources. That the health system, over time, will lose resources and efforts to cure us or guarantee us a dignified life.” In his view, those patients who, more than a “dignified death,” want to live a dignified life will be even more abandoned with the new law.
The solution is not to give seriously ill patients the option of euthanasia, “but to invest in ensuring they have a good quality of life.”
Xavi also speaks about the nonchalant way in which the ruling parties are handling this matter, without truly putting themselves in the shoes of those affected and closing their eyes to solutions that would not hasten death.
— For some, especially in the political sphere, a “solution” to the discouragement experienced by patients with incurable diseases would be euthanasia. The idea is that recognizing this “right” would promote the autonomy of the patient. What do you think?
— I don’t think so; on the contrary: I think it makes many patients feel like a burden to society and puts tremendous pressure on them.
What we, the patients, need is society’s support, to alleviate our pain. We must protect the right to life because every life is dignified; everyone has problems, even if some have many limitations. The solution is not to give them that option but to invest in ensuring they have a good quality of life and discover the meaning of it.
— Why do you think a part of the population (including most political representatives) tends to see euthanasia as a kind of “lesser evil” compared to preserving the life of a seriously ill patient until their natural end?
— Because they have not delved into the consequences of this law, which can drag many people who have never considered ending their lives to consider it and end up deciding to die. I also think that, in general, we are in a selfish society that only thinks about its interests. And they haven’t listened to the experts either.
— What would you say to those who, having never been in a condition like yours, believe it is time to have a “dignified death” law?
— Well, they should put themselves in the shoes of the sick and think about what can be done so that they can have a dignified life without resorting to death. The problem is more complex than they think. I believe that the best solution is palliative care, which provides support, alleviates pain, and helps give meaning to life.