Sept. 21, 2006
I wrote the following article about a trip I took with my mother, my husband and my two children about two weeks before my husband's death with cancer.
A Dying Colombian Soccer Fan's Last Hurrah
By Rebecca Thatcher Murcia
The weirdness of the initial phone call turned out to be an accurate omen for what would become our horrible but wonderful trip to Giants Stadium. Saúl, my Colombian husband had incurable cancer -- metastatic Chondrosarcoma. The disease was in his spinal column and gradually taking away his mobility. In March 2005 I was reading sports news on the internet in the bedroom of our house in Akron, Pennsylvania. I saw that the Colombian national soccer team was playing a friendly game against England at the Giants Stadium on May 31.
I called my husband at his office – he was co-director for Latin America and the Caribbean at the Mennonite Central Committee -- and asked if he wanted to go. He said yes, and I went on line to order tickets, but I found out that handicapped visitors cannot order tickets online. I called Giants stadium and a ticket seller told me she could sell me the tickets, but not send them to me. I told her that sounded like discrimination against people with disabilities. She told me she could send me a letter explaining how the policy of forcing wheel chair users to pick their tickets up at the stadium was not a violation of the Americans with Disabilities Act. By that time, I was annoyed. “What good would you sending me that letter do?” I asked. I went ahead and paid for the tickets anyway.
For the next few weeks, the symptoms of Saúl’s advanced cancer grew worse. His legs became weaker and weaker. Swelling in his hands and legs was painful and further limited his mobility. But as his body failed him, Saul’s spirit and will to live grew. We were constantly cooking big meals and entertaining visitors. On April 28, Saúl’s 50th birthday, we bought an electric wheel chair and celebrated with a big party at the office and another big party at a friend’s farm. Saul had grown up playing soccer in Colombia, and he always loved to watch and play the game. When writing about his childhood, he said soccer gave him a “primordial reason to exist.” He discovered the game while attending a Mennonite boarding school. “That was where I fell completely and permanently in love with this sport that all by itself gave me the structure of running with a purpose, to compare the game with my life and to be part of a team,” he wrote.
In recent years he had been so busy working, however, that he had had not had very much time to play or go to games. But that spring, as weak and sick as he was, he went to his son’s outdoor games and tournaments. He even went to watch my over-30 women’s team play.
During the first few weeks of May, Saul’s swelling, or edema, became so bad that he could no longer operate the joy stick on his electric wheelchair. I hunted around for a solution and found out that a nearby occupational therapist could show us how to bring the swelling down with compression bandages. We went to her and she wrapped Saul’s arm up in layers of cotton and non-elastic compression bandages. He was thrilled when a day or two later he could “drive” again. But the therapist could do nothing about the advancing disease and she despaired as she helped me heave Saúl in and out of our mini-van. His legs were getting so weak that it was beginning to take all my strength to lift him from the wheelchair to the car back and to the wheel chair.
The weekend of the game, my mother, who works as an occupational therapist in Sullivan County, New York, came to help out and go with us. By then we were all excited about the trip. Our children, Mario, 8, and Gabriel, 9, made a sign calling for peace in Colombia. They planned to wave it at any television cameras they saw pointing at them. Friends at the Mennonite Central Committee’s office in Bogotá had alerted a staff person for the Colombian national team and efforts were underway to organize a meeting with Saul at the Sheraton, the team’s hotel. We made reservations at the hotel and asked the reservation person if a recliner could be provided for Saul, because his pain and paralysis made it impossible for him to sleep in a bed. The person on the phone said that would be no problem and we took his word for it. The day before the game, Saul’s right leg was swollen as usual, but it was also hot and red. My mother thought that maybe we should cancel the trip. Michelle, our dear hospice nurse, sat on the floor in front of Saul and diagnosed an infection that would have to be treated with antibiotics. She called a doctor, told him about our travel plans, and persuaded him to let Saúl go on the trip. The next morning we loaded up the car with our bags and then wondered how to get Saúl inside. His feet no longer fit into his old shoes, and we had bought him some large sneakers that had made the transfers even more difficult. His feet would not pivot on their own any more, leaving his legs to twist painfully as we lifted and turned him into the car. My mother improvised a transfer disk – a device that allows paralyzed people’s feet to turn when they are being lifted -- out of cardboard. It did not work as well as a real transfer disk but it made it possible to get Saul into the car. I’m a fairly strong woman but by then Saúl probably weighed 200 pounds and could not help very much.
Once Saúl was in the car, I asked my mother if she had stowed her improvised transfer disk in the back. “Yes, if we lose it we’d have to stop at a dumpster and find some more cardboard to make another one,” she cracked back to me. I turned the car toward Reading with my mother driving behind us. Twenty five minutes later, Saul was in pain. We stopped and turned him outward so he could stretch his legs. We drove on, and did the same thing 20 minutes later. We continued like that all through the 143-mile drive to the hotel. It took about five hours. Finally we arrived at the hotel. We got Saul back into his wheel chair and went inside. Almost immediately, Saúl came up Yulian Anchico, a young member of the Colombian national team. Saul remembered when Anchico scored a penalty kick against Uruguay to help the Colombian national Under-20 team qualify for the World Cup in 2003. Anchico was obviously pleased that Saul remembered his moment of glory in Uruguay. We took pictures. We met more players. Many of them took time to talk to Saul. They signed his jersey and a soccer ball we had brought. Saul was thrilled.
We got back in the car to drive to the stadium. There the nonsensical treatment of the handicapped, which had begun with the staff’s refusal to mail us our tickets, continued. We had to pick up our tickets at Gate C, with no nearby handicapped parking. But we could not enter the stadium at Gate C. No, handicapped people had to enter at Gate A, a long walk around the stadium from Gate C. My mother, the occupational therapist, was aghast. She noted that Saúl was not too bad off with his electric wheel chair, but that many handicapped people use canes or manual wheel chairs and that the stadium’s treatment of handicapped people was really mind bogglingly shabby. Finally, we made it to our seats. At least they were good seats. We were behind one of the goals, but we could see fairly well and the upper deck shaded us from the sun. The atmosphere in the stadium was electric, with about 50,000 soccer fans, many of them hard-drinking, vocal, English soccer fans. “Oh inaccessible glory! Good germinates in the furrows of pain!” Saúl whispered the lines of the martial-sounding Colombian national anthem, a few tears brimming from his eyes. The game was great, with one of the players we had met at the hotel, Mario Yepes, scoring on of Colombia’s two goals. David Beckham bent in a ball from the right corner that teammate Michael Owen volleyed in, leading to England’s 3 to 2 victory over Colombia. Saul was a little disappointed that Colombia lost, but not surprised. “They played like they never have and lost like they always do,” he said with a laugh.
We drove back to the hotel, which according to the website, had the latest in handicapped accommodations, exceeding the requirements of the Americans with Disabilities Act. When we got to the room Saul needed to use the toilet. My mother took the children for a swim in the hotel pool. I looked in dismay at the low toilet seat. I knew I could get Saul onto it, but how would I ever get him off? We called the hotel operator and asked if they had an attachment for the seat, or a higher toilet anywhere in the building. The response was negative. Praying that there would be no disasters, I lifted Saul out of the wheel chair and onto the toilet without a problem. A few minutes later, I used every last ounce of strength to lift him back into the wheelchair. I wheeled him out into the room and we started talking about where and how Saul would sleep. At home he slept in a electric recliner which we could move and adjust during the night to keep him comfortable. The Sheraton and promised us some kind of recliner, but all they had given us was a sort of couch chair and a foot rest. As we brainstormed about what to do I burst into tears of exhaustion and desperation. Then Saúl wept a little. We dried our tears, ordered room service and welcomed my mother and the children back to the room. They were thrilled because the Colombian national team had also gone swimming.
We improvised a recliner-type set up with pillows on the coach chair and the leg rest. Somehow, perhaps with the help of the beer Saúl uncustomarily drank with dinner, we got through the night with just occasional adjustments. We had a wonderful breakfast, with lots of cheerful talk with the waiter about the game. Almost the entire Colombian team had left at something like 3 a.m. that morning. But one player, Fabián Vargas, who plays for Boca Juniors in Argentina, was scheduled to fly to Mexico later in the day. We met him while we were checking out and congratulated him for his performance the day before. We wished him good luck in his club’s upcoming game in Mexico.
We drove home, thrilled with our trip and talking about the future. Maybe we could rent a handicapped van and take a longer trip when the children finished school, Saul wondered aloud. A handicapped van or a wheel-chair accessible mobile home, I thought. We were all happy with the trip and hopeful that we could do something similar again. The euphoria perhaps blinded us a little about the reality of Saul’s health. The children finished school 10 days later on a Thursday. They came home at noon. Saul had been mostly unconscious for about 24 hours. The children went upstairs to play some computer games. Saúl took a deep breath at about 5:30 p.m. and then stopped. A day or so later, I was sitting at a table with family members and our pastor. We were brainstorming about Saul’s memorial service. At our church, we always have a time in which the children are called to the front of the church for a story or activity designed especially for them. I’ve often thought that the children’s stories are so good and creative that they upstage the main sermon. I thought of our trip to Giants Stadium and wondered if I could write a children’s story about it that would – in the Pilgrim’s tradition – be the best part of the service.
I decided to try. I found pictures of us with the Colombian players and newspaper pictures of the game. I retold the story in a simple, straightforward fashion, treading lightly or skipping entirely over some of the darker moments. Then I concluded: The family is very sad. They miss this dear, dear man very much. But they are happy that almost until the day he died, he did what he wanted to do, even if it seemed a little crazy or impossible.”
I wrote the following article about a trip I took with my mother, my husband and my two children about two weeks before my husband's death with cancer.
A Dying Colombian Soccer Fan's Last Hurrah
By Rebecca Thatcher Murcia
The weirdness of the initial phone call turned out to be an accurate omen for what would become our horrible but wonderful trip to Giants Stadium. Saúl, my Colombian husband had incurable cancer -- metastatic Chondrosarcoma. The disease was in his spinal column and gradually taking away his mobility. In March 2005 I was reading sports news on the internet in the bedroom of our house in Akron, Pennsylvania. I saw that the Colombian national soccer team was playing a friendly game against England at the Giants Stadium on May 31.
I called my husband at his office – he was co-director for Latin America and the Caribbean at the Mennonite Central Committee -- and asked if he wanted to go. He said yes, and I went on line to order tickets, but I found out that handicapped visitors cannot order tickets online. I called Giants stadium and a ticket seller told me she could sell me the tickets, but not send them to me. I told her that sounded like discrimination against people with disabilities. She told me she could send me a letter explaining how the policy of forcing wheel chair users to pick their tickets up at the stadium was not a violation of the Americans with Disabilities Act. By that time, I was annoyed. “What good would you sending me that letter do?” I asked. I went ahead and paid for the tickets anyway.
For the next few weeks, the symptoms of Saúl’s advanced cancer grew worse. His legs became weaker and weaker. Swelling in his hands and legs was painful and further limited his mobility. But as his body failed him, Saul’s spirit and will to live grew. We were constantly cooking big meals and entertaining visitors. On April 28, Saúl’s 50th birthday, we bought an electric wheel chair and celebrated with a big party at the office and another big party at a friend’s farm. Saul had grown up playing soccer in Colombia, and he always loved to watch and play the game. When writing about his childhood, he said soccer gave him a “primordial reason to exist.” He discovered the game while attending a Mennonite boarding school. “That was where I fell completely and permanently in love with this sport that all by itself gave me the structure of running with a purpose, to compare the game with my life and to be part of a team,” he wrote.
In recent years he had been so busy working, however, that he had had not had very much time to play or go to games. But that spring, as weak and sick as he was, he went to his son’s outdoor games and tournaments. He even went to watch my over-30 women’s team play.
During the first few weeks of May, Saul’s swelling, or edema, became so bad that he could no longer operate the joy stick on his electric wheelchair. I hunted around for a solution and found out that a nearby occupational therapist could show us how to bring the swelling down with compression bandages. We went to her and she wrapped Saul’s arm up in layers of cotton and non-elastic compression bandages. He was thrilled when a day or two later he could “drive” again. But the therapist could do nothing about the advancing disease and she despaired as she helped me heave Saúl in and out of our mini-van. His legs were getting so weak that it was beginning to take all my strength to lift him from the wheelchair to the car back and to the wheel chair.
The weekend of the game, my mother, who works as an occupational therapist in Sullivan County, New York, came to help out and go with us. By then we were all excited about the trip. Our children, Mario, 8, and Gabriel, 9, made a sign calling for peace in Colombia. They planned to wave it at any television cameras they saw pointing at them. Friends at the Mennonite Central Committee’s office in Bogotá had alerted a staff person for the Colombian national team and efforts were underway to organize a meeting with Saul at the Sheraton, the team’s hotel. We made reservations at the hotel and asked the reservation person if a recliner could be provided for Saul, because his pain and paralysis made it impossible for him to sleep in a bed. The person on the phone said that would be no problem and we took his word for it. The day before the game, Saul’s right leg was swollen as usual, but it was also hot and red. My mother thought that maybe we should cancel the trip. Michelle, our dear hospice nurse, sat on the floor in front of Saul and diagnosed an infection that would have to be treated with antibiotics. She called a doctor, told him about our travel plans, and persuaded him to let Saúl go on the trip. The next morning we loaded up the car with our bags and then wondered how to get Saúl inside. His feet no longer fit into his old shoes, and we had bought him some large sneakers that had made the transfers even more difficult. His feet would not pivot on their own any more, leaving his legs to twist painfully as we lifted and turned him into the car. My mother improvised a transfer disk – a device that allows paralyzed people’s feet to turn when they are being lifted -- out of cardboard. It did not work as well as a real transfer disk but it made it possible to get Saul into the car. I’m a fairly strong woman but by then Saúl probably weighed 200 pounds and could not help very much.
Once Saúl was in the car, I asked my mother if she had stowed her improvised transfer disk in the back. “Yes, if we lose it we’d have to stop at a dumpster and find some more cardboard to make another one,” she cracked back to me. I turned the car toward Reading with my mother driving behind us. Twenty five minutes later, Saul was in pain. We stopped and turned him outward so he could stretch his legs. We drove on, and did the same thing 20 minutes later. We continued like that all through the 143-mile drive to the hotel. It took about five hours. Finally we arrived at the hotel. We got Saul back into his wheel chair and went inside. Almost immediately, Saúl came up Yulian Anchico, a young member of the Colombian national team. Saul remembered when Anchico scored a penalty kick against Uruguay to help the Colombian national Under-20 team qualify for the World Cup in 2003. Anchico was obviously pleased that Saul remembered his moment of glory in Uruguay. We took pictures. We met more players. Many of them took time to talk to Saul. They signed his jersey and a soccer ball we had brought. Saul was thrilled.
We got back in the car to drive to the stadium. There the nonsensical treatment of the handicapped, which had begun with the staff’s refusal to mail us our tickets, continued. We had to pick up our tickets at Gate C, with no nearby handicapped parking. But we could not enter the stadium at Gate C. No, handicapped people had to enter at Gate A, a long walk around the stadium from Gate C. My mother, the occupational therapist, was aghast. She noted that Saúl was not too bad off with his electric wheel chair, but that many handicapped people use canes or manual wheel chairs and that the stadium’s treatment of handicapped people was really mind bogglingly shabby. Finally, we made it to our seats. At least they were good seats. We were behind one of the goals, but we could see fairly well and the upper deck shaded us from the sun. The atmosphere in the stadium was electric, with about 50,000 soccer fans, many of them hard-drinking, vocal, English soccer fans. “Oh inaccessible glory! Good germinates in the furrows of pain!” Saúl whispered the lines of the martial-sounding Colombian national anthem, a few tears brimming from his eyes. The game was great, with one of the players we had met at the hotel, Mario Yepes, scoring on of Colombia’s two goals. David Beckham bent in a ball from the right corner that teammate Michael Owen volleyed in, leading to England’s 3 to 2 victory over Colombia. Saul was a little disappointed that Colombia lost, but not surprised. “They played like they never have and lost like they always do,” he said with a laugh.
We drove back to the hotel, which according to the website, had the latest in handicapped accommodations, exceeding the requirements of the Americans with Disabilities Act. When we got to the room Saul needed to use the toilet. My mother took the children for a swim in the hotel pool. I looked in dismay at the low toilet seat. I knew I could get Saul onto it, but how would I ever get him off? We called the hotel operator and asked if they had an attachment for the seat, or a higher toilet anywhere in the building. The response was negative. Praying that there would be no disasters, I lifted Saul out of the wheel chair and onto the toilet without a problem. A few minutes later, I used every last ounce of strength to lift him back into the wheelchair. I wheeled him out into the room and we started talking about where and how Saul would sleep. At home he slept in a electric recliner which we could move and adjust during the night to keep him comfortable. The Sheraton and promised us some kind of recliner, but all they had given us was a sort of couch chair and a foot rest. As we brainstormed about what to do I burst into tears of exhaustion and desperation. Then Saúl wept a little. We dried our tears, ordered room service and welcomed my mother and the children back to the room. They were thrilled because the Colombian national team had also gone swimming.
We improvised a recliner-type set up with pillows on the coach chair and the leg rest. Somehow, perhaps with the help of the beer Saúl uncustomarily drank with dinner, we got through the night with just occasional adjustments. We had a wonderful breakfast, with lots of cheerful talk with the waiter about the game. Almost the entire Colombian team had left at something like 3 a.m. that morning. But one player, Fabián Vargas, who plays for Boca Juniors in Argentina, was scheduled to fly to Mexico later in the day. We met him while we were checking out and congratulated him for his performance the day before. We wished him good luck in his club’s upcoming game in Mexico.
We drove home, thrilled with our trip and talking about the future. Maybe we could rent a handicapped van and take a longer trip when the children finished school, Saul wondered aloud. A handicapped van or a wheel-chair accessible mobile home, I thought. We were all happy with the trip and hopeful that we could do something similar again. The euphoria perhaps blinded us a little about the reality of Saul’s health. The children finished school 10 days later on a Thursday. They came home at noon. Saul had been mostly unconscious for about 24 hours. The children went upstairs to play some computer games. Saúl took a deep breath at about 5:30 p.m. and then stopped. A day or so later, I was sitting at a table with family members and our pastor. We were brainstorming about Saul’s memorial service. At our church, we always have a time in which the children are called to the front of the church for a story or activity designed especially for them. I’ve often thought that the children’s stories are so good and creative that they upstage the main sermon. I thought of our trip to Giants Stadium and wondered if I could write a children’s story about it that would – in the Pilgrim’s tradition – be the best part of the service.
I decided to try. I found pictures of us with the Colombian players and newspaper pictures of the game. I retold the story in a simple, straightforward fashion, treading lightly or skipping entirely over some of the darker moments. Then I concluded: The family is very sad. They miss this dear, dear man very much. But they are happy that almost until the day he died, he did what he wanted to do, even if it seemed a little crazy or impossible.”
posted by Rebecca Thatcher Murcia | 6:45 AM
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