Charity Tillemann-Dick was a promising 20-year-old opera singer when a voice coach in Budapest told her that to be truly great three things needed to happen:
As it turned out, those instructions would form the arc of her life. A month after that encounter, she learned she had stage 4 pulmonary hypertension. The right side of her heart had enlarged to three and a half times its normal size. Though she had been experiencing fainting spells, she had no idea she was so ill. Without a lung transplant, 70 percent of PH patients die within five years of diagnosis. A leading expert on the disease ordered her to stop singing immediately.
Instead, she switched doctors.
Tillemann-Dick turned her experiences into the basis of a new memoir,"The Encore: A Memoir in Three Acts,”published this month by Atria Books, an imprint of Simon and Schuster.
Each section of her book is headed with an excerpt from an opera in which the heroine is undergoing a challenge (for the audio version of the book she sang the arias) — though as she acknowledges in the book, “No opera could hope to capture the messy, grotesque, gorgeous truth of life.”
That “gorgeous truth of life” encompasses everything from her family — she’s the fifth of 11 children in a Mormon-Jewish family in Denver — to her health.
She held out for five years before getting her first transplant.
Two other young women she knew who had had the operation had died. Even if hers was successful she knew it could damage her vocal cords. When she finally underwent the procedure, her surgeon had to also perform an impromptu open-heart surgery. After a month-long medically-induced coma, she awoke unable to speak. She was terrified her singing career was over.
It wasn’t; her vocal cords were intact and after months of grueling physical therapy she was back onstage, performing and giving TED talks about her experience.
It is hard now to watch some of that old footage of her singing an aria, sparkling with optimism, unaware that two years after the initial operation those donated lungs would fail.
As she awaited another transplant, doctors told her family she was unlikely to survive. She recovered from the second transplant and started singing again, making an album with members of the Cleveland Orchestra that reached the top of the Billboard classical chart.
In 2015, as she was working on the book, she noticed a new freckle on her forehead; within three and a half weeks it was kumquat-size. She was diagnosed with a rare and aggressive skin cancer, likely a result of the immunosuppressant drugs that prevent rejection of the donated lungs. One tumor on her face grew to be baseball-size, and the cancer spread to a salivary gland; surgery to remove it required cutting a nerve and affected muscle movement on the right side of her mouth.
The cancer was eliminated. But the damage it caused to her cherubic face was in a way more emotionally traumatic than the PH had been. At parties, people she had known for decades did not recognize her, and she was rattled by how quickly her physical appearance changed.
“I think everyone’s face is their identity — for me it was something I had relied on in my darkest hours. This is going to sound vain, but when I would look in the mirror, I would say, well, at least I still have my face. When this crutch was taken away, I went through the aging process in a matter of a few months instead of a few decades, as most women do.”
But in the awful way of a fire, letting go of the physical touchstone she’d depended on turned out to be cleansing.
(It also, as she notes, gives her an excuse to swan around in a glamorous oversized white hat).
Tillemann-Dick’s rock is her husband, Yoni Doron, an education technology innovator whom she married just before the second transplant — despite her initial insistence that he deserved to spend his life with someone healthy.
Those doubts returned after her cancer surgery. Looking in the mirror, she wondered, How’s my husband ever going to love me if I’m changing like this?
“He said, ‘Honey, you know I really don’t care about this, to me you’re just as beautiful as you always were,’” she said. “Of course it’s great to have a wife who looks like a pageant queen, but that’s not why he was with me. There’s this deep bond that comes with having experienced so much together, and that bond can’t be tarnished by age or scars or transplants.”
Like the operas with which she identifies so viscerally, Tillemann-Dick’s own plot twists continue. She is clear-eyed about the fact that her ending is still uncertain. The second transplant, which she received in 2012, is technically in chronic rejection, though this time around the rejection is slow and stable, and as long as she stays generally healthy it should last a while. She could live into her 80s like her grandmother (also a Holocaust survivor), but she may not.
Cancer surgery added one more unexpected twist to Tillemann-Dick’s story: it left her singing better than she had originally. With a voice that is unusual in that it is both very big and very high, she is adept at coloratura — the fast, agile singing typical of Rossini repertoire. But “I was never happy with the way my lower voice sounded. My teachers were frustrated, they told me, ‘There’s too much tension in your jaw.’”