Not long ago, in March of this year, I turned 64 years old, and what should have been a celebration of the miracle of reaching this age with a progressive neuromuscular condition called spinal muscular atrophy became instead a dichotomy between sadness and happiness. On the one hand, I felt the physical absence of my friend Gabriel, who died of cancer in February of this year. On the other hand, my friend Charly Castillo told some stories that made me laugh to death. The pleasant sentiment passed to me by my group of friends was evident, as well as the kindness of Daniel, who sacrificed his hours of sleep to be able to help me when the visit was over. And this whole feeling of happiness and camaraderie embodied in its own way my compadre Gabriel.
It was April 2, 1962. I had attended my first day of morning period class at the Hipólito Unanue High School, and I had to return to classes from 3 to 6 pm. That evening, my mother Julia accompanied me to the tram stop to take the tramcar that would take me to school about two kilometers away when we passed by the residential complex “16 de Julio.” Gabriel was talking with a group of kids our age (12 or 13) when I made out from the insignia he wore that we were from the same school. That single walk with my mother would transform over the years into one big story. According to Gabriel, who was smoking with his friends at the time (an adult activity not done by kids in those days), I was holding my mother’s hand when I passed by him (something done by sheltered kids in those days). It was not true, but year after year, Gabriel enriched this story when he talked about the beginning of our great friendship with friends of different circles. If Gabriel was still alive, he would say my mother carried me by the hand until my fifth year of secondary school. Such was his imagination, and he was a believer in his own version of events.
I was studying my first year of secondary school while he was in his second year. Gabriel had some friends who were two or three years older than us who studied with me in the first year and who knew Gabriel because he was always being punished with them after class for bad behavior. One day, they had told him to hit me on the way out of school. I had not been helping them during the exams, so I needed a lesson. I was short in stature, but I had experience on the street and many fights from primary school on my belt. By this time I was already falling because of SMA, but I accepted the fight on the way out of school, because this was the proper thing to do back then. Gabriel looked at Flores Velasco and Ramírez face to face, as well as another kid whose name I don’t recall, and said, “I will not fight. He is from my neighborhood.” Over the years, this is how my story went, and half joking half serious, I would say Gabriel was the first hired “thug” of the time. In 1963, when I was playing at recess at 10 am, these “three friends from 2F” fought with me. I defended myself as best I could, but their strength in numbers prevailed. I promised to beat the daylights out of them when I was older, but their bad marks caused them to be sent to another school. And I began to lose strength rapidly.
In 1964, when I passed to my third year and found myself with Gabriel, who was repeating the year, in Third A, we were already friends. He sat on the last row, while I sat on the first. That morning, we made the first negotiation of the many we would make in our lives. We compromised and chose the middle row.
One of those days in 1965, when the students decided not to go to classes in order to go see a James Bond premiere or just to wander around, Gabriel told me, “Shorty, when I get married and have a son whom I will call Gabriel Alonso, you will be my compadre” (that is to say, the godfather of his son). “Yeah, whatever,” I responded. Many years later, the son he imagined as a kid was not born. He instead had Rosángela, and even after many of his friends requested the honor of godfather, Gabriel kept his word. In this way, he became my compadre! A man of his word.
He was at the point of failing the year in 1965, because he took three courses during the break (called vacationals), among them biology, a course taken by fourth-year students. Flores Pezo, the extraordinary teacher of the course, always said, “Whoever does not pass the course in nine months will not pass it in the vacational.” Gabriel was the exception. His future compadre, the best student in the course, prepared him day and night, and he passed not only this course, but also the other two and graduated to fifth year with the rest of our friends. An achievement that made him proud and that he remembered his whole life.
Another story he always told over the years was about an oral exam Professor Flores Pezo gave the students in Fourth A. Then, everyone without exception was being failed by the professor, who had no better idea other than to call on me for an oral exam. I knew the most complex subjects of the course, but the simple parts were my Waterloo, and it was these parts he asked me about. My answer was not complete, and to show that he had no favorites, he gave me the worst grade I received as a secondary school student. Through the years, I nodded every time Gabriel told the story of how he passed and to top it off, how I failed that oral exam. Of course, he didn’t mention that I ultimately received the best grade in the course and was second on the honor roll. But it was his story, not mine.
I could tell many more stories of our time in secondary school, in which my compadre Gabriel was the main protagonist, but I will only mention that we would always play practical jokes on one another and sometimes end up in the middle of the road head-to-head with the wheel of a bus or injured in some bushes. These child’s games, or palomilladas as Gabriel called them, were no cause for laughter at the time, but through the years, they were the source of conversation and much happiness. Young people do a lot of crazy things, and my compadre was no exception. He lived up to the nickname Loco Muro we used for him.
Gabriel studied chemical engineering, and at university, we would get together only to attend gatherings with friends we had in common and to study strength of materials or differential calculus. All the while, my spinal muscular atrophy continued its relentless course, and soon I lost the ability to go anywhere independently or to get up off the ground when I fell. When it was no longer possible for me to attend university due to the progress of SMA, Gabriel, who lived at that time in the district of Rimac, would visit me on weekends. And he would visit more when he began working professionally for first-class chemical companies.
I attended parties with Gabriel. It did not matter if these were on the second or third floor. He would help me climb the stairs, and if I fell while dancing, he would immediately pick me up. He would accompany me home and lay me down, and then he would go back to his house. Until a year and a half before his death, if we both went out somewhere, he would go there and come back with me.
When I was carried to the Hospital 2 de Mayo, in 1972, due to a perforation from an ulcer, I decided then that I wanted to live and that SMA was not going to take me so easily. As always, my compadre Gabriel was the first to arrive at the hospital and extend his arm for the blood transfusion I really needed.
Gabriel finished his degree and worked for a prestigious brewing company in Peru, and he never forgot about his friend Julio. He regularly came to my house, where he was considered another member of the family.
A man as generous as Gabriel saw his luck change at the end of the 80s when middle-aged people were hardly ever being hired, while I was given the opportunity of my life by Dr. Liliana Mayo, Director of the Ann Sullivan Center, in 1987. Thanks to this spin of fate, I was able to see after my mother to the end of her days as I had promised her when I was a child, and I confronted SMA with better strategies and greater resolution.
My mother suffered a fall in 1994 and fractured her tibia, fibula and hip. Dr. Maceda performed an emergency operation on her, and her life was saved by an international campaign begun by Dr. Mayo and Dr. Leblanc, as well as friends of mine from England, Switzerland, Spain and Venezuela. Ten days after the surgical intervention, my mother Julia had a severe case of urinary retention and cardiac problems. Alone at home, I managed to call Gabriel and the doctor who had operated on her, who suggested I look for a doctor to treat the urinary retention while he looked for a cardiologist to give her emergency treatment. It was already morning when the danger disappeared completely. My mother Julia overcame the problems from her surgical intervention, and with the appropriate therapy, she stood and walked again with assistance across the ground full of holes in our neighborhood, which was not appropriate for her age (82) or her acquired disability. She lived four more years, and my friend Gabriel was at our side until her last days in 1998.
I also fractured my tibia and fibula in 1995 and spent three months with my left leg in a cast, which because of its weight and my atrophy made it impossible to stand. Even so, I did not stop working. In 1996, I had a bladder perforation and an enormous stone that should have gone down the intestines, but it went strangely into the pylorus, where it stuck. The doctors thought I had cancer.
I remember that night. I was at home feeling sick, and since I had been refused several times at the Hospital Almenara emergency room, I asked Gabriel to take me to Hospital Rebagliati, where we began to arrange my hospitalization, even though as a patient I did not belong to this general hospital. They did not accept me, but they sent me back to Almenara in an ambulance with documentation requesting my admission. Gabriel ran back and forth until dawn to do the analyses for me to be able to be hospitalized. Sixty days later, my life was saved miraculously, because the odds of me leaving alive had been against me.
Something similar happened in 1999, when my mother Julia had already died. I again overcame another problem with my bile duct thanks to the extraordinary expertise of Dr. Rae and his medical team. At that time, as before, thanks to God and the support of my siblings Miguel, César and Rosa and my friend Gabriel, life prevailed over death.
In this new century, I had to fight for a plot of land that belonged to me by law in the neighborhood where I was born. When my mother Julia was living, we had the right to a plot of 50 square meters. At her death, the right diminished, and I had to fight against this injustice. Thanks to God, reason prevailed, and I built the house I had promised my mother. As always, my unconditional friend came through to bring it to completion since my weakened body would not permit me to oversee the work myself. It took time, but for me who knew no impossibilities but rather persistence and relentless battling, the dream of having my own house became a reality.
A glance at my small room or the rest of the house is enough to recognize not only the strength of a man who did not surrender in the face of adversity, but also the incomparable help and the contribution of a great friend in the process of its completion.
I never remotely thought I would outlive my compadre Gabriel, who except for his controlled diabetes in the last few years, had always enjoyed good health. For this reason, when Gabriel visited me on January 9, 2012, and said he had stage four colon cancer and that he did not know if he could survive the illness, the news hit me hard. I knew in my heart that my compadre was going to go before me, since the colon cancer had spread to the liver and there was not much left to do.
Days later, I confronted another big problem. From one day to the next, I was losing the vision in my right eye, and it was necessary for me to have an emergency operation due to a retina detachment I had. CASP, where I work, the help of American friends and the expertise of Dr. Wong were God’s instruments in the recuperation of my lost vision.
As soon as I felt better, I called my compadre Gabriel, because it was my mission to help him on his way toward his final departure. I called him every weekend, and we would talk for a long time about all our school experiences. And as he became weaker, he consulted me on how to avoid bedsores that could develop by being seated a long time. So I recommended him water and gel cushions, urinal bottles and other such things that my experience with spinal muscular atrophy had taught me. He followed all the instructions I gave him, and he experienced in the flesh the muscular destruction that SMA had caused in me through the years. He more understood the compadre who could not go at his speed when I was 30 or 40 years old.
In December 2012, my compadre Gabriel came to tell me goodbye. He knew he did not have much time and asked me if I would make the effort to visit him, because he would not be able to come to me. I called him regularly on the phone, and I was able to visit him on January 30, 2013, when the holiday break was over. My compadre, faithful to his custom, said to me, “A beer, compadre, because you did not come here for nothing.” I saw him very weakened. He could barely move in his chair, and his swollen abdomen looked like that of a pregnant woman.
He was very swollen, but even so, he drank three beers with me and my assistant Domingo. He asked for two more for us, because that was the way my compadre was. He could no longer drink, but he did gladly eat the ham sandwich prepared by Domingo that he liked so much. Before I left promising to return, he said to me seriously, “Compadre Julio, do you think I will be alive for my birthday, you know, March 26?” I could not lie to him, because I had never done so, but neither could I tell him what I thought. I only managed to say to him, “Compadre Gabriel, the days you have left, whether few or many, spend them with your loved ones, my goddaughter Rosángela, your father Gabriel and your sister Leonor.” The next day, Leonor called me and asked me how my visit went. I told her Gabriel asked me if he would be alive by his birthday. She asked me the same thing, and although really his birthday was almost two months away and would be impossible for him to reach, I could not imagine and refused to accept that his end was a matter of days. The truth was my compadre had been waiting for his best friend to visit him to begin his final journey.
On February 3, Jorge Mandujano, a friend from the neighborhood and a former student at the Hipólito Unanue High School, where we studied, came to my house around 7 pm to give me the news: “Julio, Gabriel has left us. I am going to begin the burial process right away.” Gabriel was so organized that he had asked our friend Jorge to be in charge of the process at his passing and paid all the expenses beforehand. Such was my compadre: foresighted, sincere, loyal, honest, good at dancing (the best within 200 miles, he always said), and staunch defender of the weak in the face of injustices.
Several months have passed since his death, and even as my life changes from the progress of spinal muscular atrophy, I am adapting and continuing the tenacious fight. And this is possible because I had the luck of finding along my way people with a big and supportive heart like my compadre, friend and brother, Gabriel Muro Rodríguez.
I am not telling you goodbye, compadre, because I know one day we will see each other again. Until then, Gabriel, see you later.
Translation by Matt Watson, Julio’s friend also with SMA