Two
Burdens
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.
Good read. And I learned something about a rare medical condition too. I trust that there are more options for babies born with this condition today?
ReplyDeleteMost children receive the "total correction" as early as possible. There are other surgical repairs that can be made. I had a great resource person for the book, a cardiologist at Massachusetts General, who was willing to do some digging about early treatment of the disease. While at the time it was considered a "congenital heart defect" today it is regarded as a "congenital heart disease"; and sadly, it is a lifelong struggle with a heart that can never be completely "normal." Yet these patients live long productive lives, sometimes into their eighties.
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