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"It's Not Just My Life Anymore" by John U. Bacon

Two very different people
A new life
e meeting
The ice breaks in Columbus
A new man
"It's Not Just My Life Anymore"

by John U. Bacon

Unlike most events in the Transplant Games, the volleyball competition is not divided by age group or gender. So in the finals between Team Philadelphia and Team Indiana, it was no surprise to see teen-aged girls playing alongside middle-aged men. Although one of those middle-aged men, Santos Felix, played a solid game -- digging for the ball, hustling all over the court and making nice sets for his teammates -- you probably wouldn’t remember him after the game ended. But if you heard the story of how he got to that court in Orlando, you probably could never forget him.

"Seeing Santos compete,
I can’t help but think Michael would have loved this. It helps me to know that he can go on in some way!"

--Sue McVey

Two very different people

Felix, 43, the youngest of four children from Puerto Rico, immigrated to the United States 24 years ago and has a wife and three children. Seven years ago he had a job at the Philadelphia airport, but not much energy, focus or zest for life largely because of his failing liver. His failing liver created a lot of retained fluid, which in turn started to shrink his lungs. From 1993 to 1995, Felix was going in and out of the hospital every two weeks or so, and when he was home he was too weakened to work effectively. On two different occasions he fell into comas.

While Felix lay in bed at home, with little hope for a brighter future, a healthy, vibrant 14-year-old with his entire life ahead of him was swinging on a rope, “doing what boys do,” says his mom, Sue McVey. It was June 16, 1995, the day before Father’s Day. The previous afternoon, Michael McVey’s 16-year-old sister, Janette, had taken some photos of themselves for a Father’s Day gift.

But Janette would not give those photos to her father for several weeks, because on that Saturday, the rope Michael was swinging on broke, sending him flying towards a concrete abutment. He hit his head, hard, but incredibly, he biked home. Once home, however, it was clear he was not well, and soon fell into a coma himself. Later that night, on the eve of Father’s Day, the doctors approached the McVey’s with the worst possible news: their boy, so vital just a few hours ago, had become neurologically inactive, and would be unable to live even in a comatose state without life support. The McVeys would have to make some very tough decisions.

After coming to terms with this shocking reality, and wrangling over what to do, the McVeys decided to end life support on June 20, 1995. Michael was officially declared dead the same day.

Among the many serious choices the McVeys had to make was whether to donate Michael’s organs. Six months earlier the family talked openly about organ donation when Janette got her driver’s license.

“We felt very comfortable that that would’ve been what Michael would want,” Sue McVey says. “It’s a cliché, but it’s true: you need to put yourself in another person’s shoes. If all Michael needed was a kidney to get well, I’d expect one to be there. The actual decision to donate was the easiest of the decisions we had to make that week.”

The doctors were able to transplant Michael’s kidneys, corneas and his liver. The liver went to a middle-aged man not too far away, whiling away his life.

In the spring of 1995, it would be difficult to imagine two people with less in common than Michael McVey and Santos Felix. Michael had been a tall, clean-cut 14-year-old All-American boy who loved life and had made the most of it. Santos was a relatively short, 38-year-old man with a salt-and-pepper beard and a few tattoos on his forearms from his wilder days. Being forced to spend most of his time at home in bed, Felix was largely indifferent to whether he lived or died. But shortly after Michael’s life ended so suddenly, Felix’s life began anew.

A new life

The liver transplant went well. Not only did Felix soon feel renewed vigor, the ripples of that operation washed over Felix’s life in ways he never anticipated.

“I feel great!” he says. “I started doing a lot of things I didn’t think I would be able to do.” These included spending more time with his wife and youngest of his three children, Rafael, now 12, and finding a new job at the Quicky factory, which makes household goods like mops and brooms.

Felix felt a great appreciation to his donor family, and a strong obligation to thank them. But each time he tried to write them a letter, he couldn’t finish it. “My wife was always telling me to write it, but I would just say, later, later,” he recalls. “What do you say to someone who would do such a thing for someone they don’t even know?”

Felix finally sent the McVeys a letter near the end of 1995, five months after Michael’s life ended and his was renewed.

“We were very happy to get his letter,” Sue McVey says. “But it took us another five months to respond. It was the same thing: we’d start a letter and not be able to finish it. But I finally sent one, and then we started writing more often.”

Unbeknownst to Sue and Santos, they both volunteered at Philadelphia’s Gift of Life. The other staffers made sure the two never met accidentally, arranging their shifts and duties accordingly, but eventually the idea of meeting came up in their correspondence. It became more urgent when they both planned to attend the 1998 Transplant Olympics in Columbus, Ohio. They figured it would be best to meet beforehand, to avoid an awkward, unplanned meeting.

The meeting

On a nice June day in 1998, almost three years after Michael’s passing, Santos waited in a small room at the Gift of Life offices for Sue and Janette McVey to arrive. As the minutes passed, Santos sat at the table, unable to resist letting his anxieties roll over in his mind.

“How would she react when she saw me?” Santos recalled wondering. “I was so worried that she’s not gonna like me.” If you’re tempted to compare the event to a high-stakes blind date, Santos would be quick to correct you. “No,” he said with a grin. “I never had any trouble with that. This was much harder.”

But tensions are undeniably high in any meeting between donor families and their recipients. The families are still working to get over their grief, while the recipients must overcome survivor’s guilt. The families want to feel appreciated for their gift, while the recipients want to be deemed worthy of receiving it. And it all comes up between people who would have continued to be strangers without this most intimate of connections.

“Before the meeting, you don’t know if you’re on the same plane,” Sue explains. “When you receive a donation, they tell you what to expect from the surgery and the medication, but not about being overcome with mourning for the donor a few weeks afterward. And we had our own feelings to work through.”

When Sue and Janette McVey finally arrived, Santos stood up, and offered them flowers. They gave him a card, and the photographs of Michael that Janette had taken the day before he died.

“It was kind of formal at first,” Janette remembers. “He was really nervous -- but we were, too.”

“I didn’t know what to expect,” Santos admits. “But after ten minutes we started being more comfortable with each other.”

“We had a lot of questions,” Sue says. “How sick were you? How long did it take to feel better? We had imagined the meeting for a long time.”

Although the meeting went well, all three kept their guards up to a certain degree. Those would come down for good a few weeks later in Columbus.

The ice breaks in Columbus

Their first meeting was as cautious as their second was raucous. Attending their first Transplant Games in Columbus in August, 1998, opened them up in ways they hadn’t expected. There is something about being surrounded by thousands of people who have endured the same incredible trials they had that made Santos and the McVeys feel understood and safe.

“People knew how to react when you told them your story,” Janette says. “We had no idea that every face we saw would know what we’d been through. We got hugs from people we didn’t know. We learned to carry tissues around wherever we went, because we could need them at any time. Columbus was just overwhelming.”

The trio received some unexpected help from Sue’s old childhood friend, Cindy Blackburn, who still lived in Ohio and came up to visit. She had just survived breast cancer, so she could relate to some of the emotions Felix and the McVeys were feeling. Plus, as Sue says, “She’s very outgoing, and a little crazy. She was the middle man, chatting up Santos, giving us hugs, keeping the conversation going. She was the icebreaker for us.

“It was bittersweet,” Sue adds. “But that’s better than just bitter. We can cry together."

“And laugh,” Felix says.

A new man

Things warmed up quickly between the two families after Columbus. They started meeting more often, talking more openly, crying more freely. A year after the Columbus games, Felix invited Sue McVey back to his first birthplace in Puerto Rico.

Despite the language barrier, a lot was communicated during that brief trip. Sue quickly became friends with an old blind woman Felix’s mom helps who had lost a son. “She didn’t speak any English, and I don’t speak Spanish,” Sue says, “but when I met her, we hugged and we cried. We had that bond. We knew the same things.”

“My family and my friends, the way they looked at Sue when I was talking, she knew what I had told them,” Felix recalls.

Felix’s mother, especially, could barely believe the act of generosity that allowed her youngest child to live, and live so well. She remembered the wild man who had left those shores 24 years earlier -- “How could she forget?” Felix asks, with a grin -- and was impressed with how much Santos had grown.

“I’ve changed my point of view of life,” Santos says. “I used to go party and do things I shouldn’t do. I used to get real angry at a lot of things. But now I think, it’s just not worth it. I go to church now. I’m enjoying my life with my beautiful wife and my son."

“Before I really didn’t care much about life. Now I think things over before I do them. It’s not just my life anymore. I have to think about all of us.”

Now Sue and Santos make regular trips together to schools, churches and other organizations to spread the word about organ donation, and the bigger message about appreciating life itself.

“The kids in the classroom, when they see us and hear our story, their eyes jump out,” Santos says.

“They realize they’re mortal,” Sue notes, “something high school kids don’t usually think about.”

Santos and the McVeys made another trip together this week in Orlando.

“These games show we can live a normal life,” Felix says. “We can play basketball, volleyball, do all kinds of things. There’s nothing wrong with us.”

Nothing at all. If you saw Felix’s Team Philadelphia buzz through its bracket, culminating in a two-game sweep of Team Indiana in the finals, you wouldn’t know any of the athletes had received transplants unless someone had told you.

Sue McVey presented the gold medals to the team members, but not before putting her arm around Felix and announcing to all those gathered in the Fieldhouse lobby, “This is my son’s liver recipient.” In this crowd, that’s all she needed to say. Everyone there knew how to fill in the blanks.

“As sweet as it is to win,” Sue said afterward, “no one really cares. Everyone just wants to play. That’s enough.”

Sue had one hand on Felix’s shoulder, while both of them dabbed at the tears running down their cheeks.

“Seeing Santos compete here,” Sue added, “I can’t help but thinking, Michael would have loved this. It helps me to know that he can go on in some way.”



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