My character Eli Levin suffers from a frightening congenital heart condition, Tetralogy of Fallot. Eli’s story takes place in the middle of the twentieth century, when a surgical procedure had only recently been developed to offer some hope to these children, known as “blue babies” because of the oxygen deprivation they experienced.
Eli has two burdens: he is also a prodigiously gifted pianist. He lets neither of these define him. Eli chooses to become an accompanist, or a collaborating artist, a choice which means he is sharing his gift. He refuses to give in to his heart. Instead, he gives it to music, and to the girl he loves with all his heart, Kristina Porter – who eventually becomes his wife.
When they first met as teenagers, Eli was aware his life would probably be a very short one. Eventually, a second surgery was perfected which still gives T.O.F. patients a good chance at a longer and more “normal” life. Medical science has yet to find a way to make the hearts of these courageous people “normal” even now; and often medication and more surgery are required. Sometimes a heart transplant provides more years.
At this point in the book, Eli is aware of the option for the second surgery, and knows he will have to have the procedure soon. As I learned while researching the book, T.O.F. patients seem to share a great love of life, a desire to achieve all they can despite the odds. They never take their hearts for granted, but most do not let the condition rule their lives. Yet I’m sure they all struggle with their heightened sense of mortality. Eli certainly does.
Sometimes during a break while he was practicing by himself, Eli would feel a sudden chill. He was about to turn twenty-seven. In three years he’d be thirty. He remembered he had told Krissy when he first met her he wasn’t expected to live past thirty, and he was sure she recalled it as well.
When Eli had these moments of fear, Krissy was very much aware of it. He would grow very quiet and reach for her urgently. There was desperation in his lovemaking, a sense that he was afraid he could be making love to her for the last time.
She talked to him about it, stroking his head, his shoulders, his chest. “I think I have an idea what you’re feeling,” she said softly. “I feel it too, sometimes. But Eli, what Les Allen said to me before we were reunited is such a help to me. I know I can’t really understand how you feel, my dearest, sweetest boy. But he told me to focus on life, and not to live or love in fear. Sometimes that has to be hard for you. Sometimes it’s hard for me.” He was quiet but moved as close to her as he could.
“I know you’ve said you don’t think the power in the universe ... what I’ve come to think of as the Eternal ... intervenes in our lives. And you could be right. But I do wonder if we are given a path to walk in this life for a reason. I don’t think you even know what an inspiration you’ve been not just to me, but to many people who know you.”
“Why do you say that? I haven’t done anything ... well, I try to share my love of music when I play. I’m sure there are people who don’t like me very much. You know what an opinionated musical snob I am.”
She laughed softly. “Yes, you are a musical snob. You wouldn’t be my Eli if you weren’t. But people who know you, and know what you’ve been dealing with all your life, admire your love of life, your incredible courage, your artistry.”
They moved even closer to each other, wanting to feel nothing could ever come between them. He said softly, “Having you in my life has meant the world to me, my love. If your universal being ... the Eternal ... did plan a path for me, I’m so thankful it included you.” He was quiet for a moment. “I hope I have more time. I think there are more things I’m supposed to do while I’m here.”
For a few minutes, it seemed to them their hearts were beating almost as one. It was a lovely moment, and they drifted off to sleep filled with a sense of peace.
Eli's Heart is available on Amazon, paperback and Kindle.
cover by Tristan Flanagan