Living is wonderful. Living is very complicated. To live is to have good days and bad days. To live is to keep quiet, to speak, to love, to suffer, to remember and to forget, to approach. To live is to let oneself go, laugh and cry, come and go. But there are people for whom living is above all suffering; have unbearable pain; be obliged to depend -for everything- on someone; to pass prostrate years, paralyzed, without possibility of cure or improvement; know that "today was the most horrible day of my life and tomorrow will be even worse", as Luis said without losing the smile. For those people living is far from being wonderful. It is not a question about which one can say who is not capable of understanding that suffering or who does not know how to do it from the heart. Living is a right, not an obligation.
We all cling to life when it deserves to be called like that, not when life is but a succession of eternal days and endless nights, not when there is only the resource of dreaming because reality is unbearable. When the body is the worst cell; when you can not play or caress and laugh it hurts -much-, it's time to leave, or at least to know that you can leave with the same dignity with which you have lived, that you can decide at what moment and with whom to say goodbye . What less, right? Why Luis could not choose when to say goodbye?
We were lucky: I was holding his hand when he fell asleep on August 1, 2017 – his weak lungs had stopped working. Luis smiled. On his face you could see that he rested, at last. That after many months of asking for something as basic as dying, he had succeeded. His smile read "thank you."
Why did he have to suffer so much? Why did it have to wait until the disease took him away? The answer is very simple: because the politicians, those in charge of legislating, have been incapable up to now of being brave, of looking into the eyes of people and leaving behind taboos and prejudices. The courage of Luis, his dignity and generosity should make those who rise up stand up as defenders of life when in reality they only take care of their votes and do not consider people but seats to which we wake up every day with an illusion and fall asleep with a broken heart in pieces. Luis hoped to be the last person to suffer what he suffered. It has been 20 months since he left and many continue to suffer, without being able to decide freely. Freedom, the most precious gift that for selfishness was taken from Luis and all those he represents. "We have to choose the battles, Asun, and the one we choose, until the end," he told me. This is our battle: to get the right to freedom. Freedom to dispose of the end of life and that no one has to go to the dungeon to pack the bags of the person they love. So easy. As difficult as your Lordships want to do it.
Luis was 50 years old and had progressive primary multiple sclerosis.
Asun Gómez-Bueno is the widow of Luis de Marcos and author of The longed for freedom.