‘If I can’t get better and I can’t stand the pain, at least I can choose how I die’

Rafael Botella asked for help to die a year and a half ago. He could not bear to continue living as he was – a quadriplegic, bedridden and in unbearable pain after a car accident 16 years ago at the age of 19. He was frustrated that Spain’s politicians had become embroiled in their own affairs and that the proposed euthanasia law had been sidelined. At that time, parliament had been dissolved and elections were being called. He was desperate and called the Right to Die with Dignity (DMD) association, which supported him and also advised him to look for alternatives to reduce the pain.

But after decades of social debate, Spain’s lower house of parliament last week approved the country’s first euthanasia law. It passed on first reading with 198-138 votes and two abstentions. Only the conservative Popular Party (PP), far-right Vox and Union of the Navarrese People (UNP) voted against it.

Rafael, now 35, talks to EL PAÍS about and what the new law means to him and his ongoing struggle with pain. “It’s real, because it’s in my brain. Although they could cut off my leg with that Roman sword up there and I wouldn’t know it,” he says.

Since we don’t ask permission to be born, why do we have to be given permission to die?

Rafael Botella, quadriplegic in Valencia

Rafael is speaking in his perfectly adapted room on the first floor of a house in the village of Simat de la Valldigna, in Spain’s eastern Valencia region. He has started a new central desensitization therapy to see if it helps him manage the pain; met with people in a similar situation, which has proved stimulating; and spent a day with the Honda’s LCR MotoGP team, who invited him to the races at the Cheste Circuit racing track in Valencia. He is even working on a short film about his life.

“I don’t want to die now,” he says. “But the pain is still there and I don’t know what’s going to happen. That’s why it’s so important that the euthanasia law has been passed. This is not about [going shopping] and saying, ‘Give me two balls, one racket and one euthanasia ball.’ People don’t just buy euthanasia. If I don’t have the option of getting better and I can’t stand the pain anymore, at least I can choose how I die; I have the option of a dignified escape.”

Rafael has been talking about this for years. “I studied at a religious school, and I know some very devout people who belong to Opus Dei as well as priests, and they will all understand if I take that decision and support me with what needs to be done, because they know me. Others may think: ‘He wants to die because he is a burden to the family, because he has been influenced, because it is fashionable, because he is tired of fighting.’ But those who know me, know that if a person like me decides to use euthanasia, it is because I am really suffering, because I have tried everything and I can’t stand it anymore.”

Rafael does not enter into the technicalities of the new euthanasia law and is confident that it is “very meticulous, very clear; that no one can use it to their advantage.” The law’s clarity should help to assuage doubts and address the response of those who “talk about wanting to turn Spain into a slaughterhouse,” says Rafael.

He does not consider the fact that Spain is the sixth country in the world to have passed a law on euthanasia to be of great importance. “We shouldn’t be bothered with rankings,” he says. “The debate simply shouldn’t exist. It is a person’s individual right. Since we don’t ask permission to be born, why do we have to be given permission to die? If you are in your right mind and say you want to die because you are in pain, who are you to say no?”

Several projects are keeping him from making that decision just yet. “I can’t leave here without going back to the race track and without making the short film,” he says, half-smiling.

In the next room, Marisa, his mother, chats to the neighbors who are constantly dropping by, though according to Rafael, fewer have been coming due to the coronavirus pandemic. An uncle comes in to say hello and ask how everything is going and leaves. Rafael, whose girlfriend died in the same car accident all those years ago (neither of them was driving), is in a good mood, but the pain goes deep. “Well, I always try to keep cheerful,” he says.

Those who know me, know that if a person like me decides to use euthanasia, it is because I am really suffering

Rafael Botella, quadriplegic in Valencia

His expression changes, however, when he talks about his family’s citrus business and how 44 years ago, a bag of oranges that now earns them just €2.80 would fetch 1,000 pesetas (€6). “There’s no justice,” he says. “But at least the oranges keep my mother and I clothed and fed.”

Rafael sounds more optimistic when he talks about the short film project. It is directed by Alicante-based filmmaker, Adán Aliaga, a four-time Goya nominee and director of La Casa de Mi Abuela (Or My Grandmother’s House). “We have been given grants from the [Valencian] regional government for the script which we came up with between the two of us,” he says. “He [Aliga] had something in mind, but reality is stranger than fiction. It’s about how I faced the problems of being a quadriplegic; it emphasizes my love of hardcore music, how I went to nightclubs in a wheelchair with people jumping around me, until the pain stopped me; it’s about how we’re treated like children when it comes to talking about sexuality; it’s about many things.”

He also wants to give talks about his experience, finish a small book and fulfill what is perhaps his biggest dream: to visit Rome with a female friend who is considering euthanasia. Rafael seems to forget his pain when he talks about his fascination with ancient Rome and the audiobooks he devours about Roman emperors Trajan, Hadrian and Marcus Aurelius. He keeps a coin and a Roman sword fashioned in Toledo as it would have been in days gone by. “Yes, Rome would be great,” he says.

English version by Heather Galloway.