Meet Joe, a brash, intelligent — and fictional — teen who is the main character of the novel, My Name is Joe, by Richard Holloway, PhD, professor and Associate Dean of Student Affairs, Medical College of Wisconsin. Joe is cocky, funny and in trouble at school. And Joe provides Holloway with a way to express his feelings about his son, Evan. Evan, an Alpha, had symptoms of liver trouble from when he was two, and became a candidate for liver transplantation at the age of three.
Evan’s liver was transplanted on February 24, 1997. “That is a date,” says Holloway, “that all transplant families remember.” At first, the transplant went well. The operation itself went flawlessly. But Evan had a bout with Epstein-Barr virus about four months after surgery. He got so sick, he nearly died. The odds are five to one against kids making it through an Epstein-Barr infection after a liver transplant because they are so heavily immune-suppressed that they cannot fight the spread of the infection. But Evan beat the odds and survived.
“During that time, I was struggling every day to find a way to get through the huge stress,” recalled Holloway. “I’m a psychologist by training, so I finally took some advice that I might have given to one of my patients: I wrote about it.” Holloway kept a legal pad with him as he and the family stayed in the hospital day after day. A few random notes turned into a journal. And the goal initially was to someday turn the journal into a memoir.
But Holloway soon decided against the memoir approach. “There are other memoirs about Alpha-1 and transplants,” he said. “Besides, it was too emotional and close to the bone to be able to really say the things I wanted to say about this experience in a memoir. Plus, I wanted the focus to be on the transplant recipient himself, not on me as the dad. So I wrote it as a novel.”
The literary device of the novel was inspired by Harper Lee’s classic To Kill a Mockingbird, in which a woman tells the story of events in her childhood in first person. The reminiscences have the vantage point of a small child’s recollections and impressions combined with an adult’s understanding of their significance and context. That is where the similarity to To Kill a Mockingbird ends, however. Joe is irreverent and smart-mouthed. He’s a 19-year-old college student who is forced, as part of a disciplinary hearing, to tell the story of his life to the dean. The story involves his liver transplant at a young age, and the ways in which it affected his life and his attitudes.
“Joe is not my son, Evan,” Holloway said. “There are parts of Evan’s story that Joe tells, but I checked with Evan first to make sure it was okay with him that I do that. He was fine with it.” The goal, Holloway explained, was to have readers feel what the Holloway family felt throughout the ordeal. But it didn’t work that way, and for a very interesting reason.
“I found that families don’t have feelings,” he said. “Individuals do. My feelings about this were different from my wife’s, and those are different from my daughter’s. Everyone has their own, very individual experience. That has had an important impact on how our family has dealt with all of it. It’s something that all families need to recognize when they are going through a shared experience like this. Just because you feel or react one way, doesn’t mean your wife or children are experiencing the same thing in the same way. It was quite a thing to realize.”
Evan likes the fact that his story is being told, though he balks at being pigeonholed as a transplant patient. He’s now an active 15-year-old who plays guitar and golfs. And while the attention of being a transplant patient has its allure, Evan mostly wants to be a normal kid.
“We’ve been part of the Alpha-1 Association for a long time now,” Holloway said. “I was asked to speak at one of the regional meetings in Wisconsin last summer, and we got a great response from everyone, so I was also a speaker at the national conference in Virginia in June.”
Ultimately, the book is about fear and how we handle it. Joe handles the fearful experience of transplantation in complex ways — through humor, irreverence and rebellion. “My hope is that readers will get close to the experience in a way that isn’t fearful for them,” Holloway explains. “The feedback I’ve gotten tells me that readers seem to understand what it was like to be that sick. I also hope people come away with the idea that if they are a transplant patient, or a family member is, that they can survive. It’s a message of hope. Everyone has a story. Everyone has a challenge. I would hope that through Joe’s experience and survival, and through our family’s experience and survival, others will realize they can get through it, too.
My Name is Joe, by Dr. Richard Holloway, is available at Amazon.com (click here).
“My Dad started feeling sorry for me about this time, and told me that he wouldn’t eat for as long as I wasn’t able to. Nice touch, but I know he was sneakin’ off to get something to eat down at the cafeteria. But it was nice of him to show the level of support he did. Let me tell you how hungry you get: you look forward to brushing your teeth just for the taste. I asked my mom if I could brush my teeth, like three hundred times a day. That taste was so intense, so satisfying you couldn’t believe it. When bedtime came (a weird thing to talk about when you’re hospitalized, cause you’re always in bed) I would brush my teeth as many times as they would let me. But the docs and nurses had me so paranoid about getting anything in my stomach, that I was really careful not to swallow any toothpaste or even water. I was “NPO” — “nollo para oro” — or some damn thing, for weeks — and I mean weeks. That NPO thing means nothing by mouth, by the way, but I made up the phony Latin just for you.”
— Excerpt from My Name is Joe
This article was first published in Alpha-1 Magazine in Fall 2007