By Karen Thurston Chavez
I confess: when I first opened up SWIM: A Memoir of Survival, Bill Coon's self-published journal about his heart and kidney transplants, I was skeptical.
But then. Well, damn.
Bill’s memoir is raw, stark, brutal and stunning. His story is remarkable, mind-blowing and incredibly inspiring.
Today, it seems like everyone is described as heroic, inspirational, courageous, a true wonder. Bill really is.
Today, it seems like everyone is described as heroic, inspirational, courageous, a true wonder. Bill really is.
He was born in 1989 with hypoplastic left heart syndrome (HLHS) – the left half of his heart was severely underdeveloped. Back then, the survival rate for babies with HLHS was near zero.
Some babies (even back then) had the option of undergoing a three-stage surgical repair (Norwood procedure almost immediately after birth; Glenn procedure at 3 to 6 months of age; and the Fontan procedure at 3 to 5 years of age). But Bill was too sick. His only chance of survival was a heart transplant. The same day his parents were considering taking him off life support, a heart that matched became available.
When Bill had his heart transplant at 3 weeks old in May 1989, he was only the fourth infant to have a transplant in the Midwest, and only the eighth baby in the nation to undergo a heart transplant. Except for his first 21 days of life, Bill has never lived with his own heart.
In the world of congenital heart disease, Bill is a major piece of history, of victory.
I don’t have any first-hand, personal experience with transplants. Through my work with Broken Hearts, though, I have come to know many adults and children who are transplant survivors. I’ve watched families wait days for the right match, and watched as others waited weeks, months, a year. A family I know left the hospital without their teenage daughter; she died eight months into her rocky, painful and courageous wait.
No one I know has ever painted the wait for transplant a fun, pain-free picture. But neither have they illustrated it as darkly or as deeply as Bill’s portrait.
The book’s opening summarizes Bill’s childhood.
“I lived a pretty sheltered childhood up until I was 5 years old,” Bill says. His transplant medications made his immune system weak. “I have no memories as a kid of ever leaving my house at all.”
But Bill had three cousins and his younger and older siblings as playmates, and he describes his childhood as “colorful, carefree and filled with ignorant bliss.”
Life was good … until his sophomore year of college. He began experiencing wrenching pains in his abdomen, struggled to breathe and was exhausted most of the time. Finally, on June 7, 2009, he couldn’t ignore his symptoms any longer and his mother took him to the emergency room.
“My life of good fortune and ignorant bliss had come to an abrupt end,” Bill says. “I didn’t know it then but my journey had just begun. I was about to enter the darkest period of my life; a period in which I experience a great deal of pain, heartache, depression, anger and sorrow.”
And that’s where his story really begins.
This is not a book Bill sat down afterward and wrote, rewrote, polished and sanitized. It’s his personal journal, written along the way, in the moment. Moments when he was grateful, angry, bitter, happy, determined, sad, willful, groggy, drugged -- and that might cover just one day.
Bill’s depictions are gripping and painful, and they're often laugh-out-loud funny. No matter his mood or condition, his feelings and thoughts are compelling.
If you want to know Bill's story, and you do, you'll have to read his book.
This is not a book Bill sat down afterward and wrote, rewrote, polished and sanitized. It’s his personal journal, written along the way, in the moment. Moments when he was grateful, angry, bitter, happy, determined, sad, willful, groggy, drugged -- and that might cover just one day.
Bill’s depictions are gripping and painful, and they're often laugh-out-loud funny. No matter his mood or condition, his feelings and thoughts are compelling.
If you want to know Bill's story, and you do, you'll have to read his book.
Learn more and connect with Bill Coon:
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