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Two lung transplants couldn’t quiet Latter-day Saint opera singer’s voice

SHARE Two lung transplants couldn’t quiet Latter-day Saint opera singer’s voice

Opera singer Charity Tillemann-Dick died April 23 in Baltimore at age 35 due to complications from long-term immunosuppression, the Washington Post reported.

SALT LAKE CITY — “Beauty” and “grace” might be obvious word choices to describe an opera singer, and they have both been used in descriptions of celebrated soprano Charity Tillemann-Dick, a member of The Church of Jesus Christ of Latter-day Saints.

When it comes to this particular opera singer, however, words like “grit,” “resilience” and “heroism” are also in the mix.

Tillemann-Dick has become a hero to many as she has undergone two double lung transplants and continued to sing and tell her story. She recently released a book, “The Encore: A Memoir in Three Acts,” which retells her ongoing fight to survive since being diagnosed with idiopathic pulmonary arterial hypertension in 2004.

Idiopathic pulmonary hypertension is a rare — think one in a million — condition in which the arteries that carry blood to the heart narrow, causing dangerously high blood pressure.

The potentially terminal disease causes shortness of breath, dizziness and fainting, all of which became impossible to ignore as Tillemann-Dick trained her voice at the Franz Liszt Academy of Music in Budapest when she was a young adult. These symptoms eventually led to her diagnosis.

In “The Encore,” Tillemann-Dick describes the events leading up to and following her diagnosis, including being home-schooled with her 10 siblings by liberal Mormon parents in Colorado; discovering to her great joy that she had a voice for opera; and undergoing and recovering from not one, but two double lung transplants.

Living through gratitude

With the first transplant, Tillemann-Dick was free of pulmonary hypertension. But transplantation brings with it almost inevitable eventual rejection, and her body started rejecting her first set of new lungs soon after transplant surgery. The second transplant lungs went better and she now talks about her new lungs like they are a dear friend.

“This pair has been a really good match,” she said in an interview with the Deseret News. “We’ve worked together really well, and I’ve sung with them all over the world, and they’re wonderful. I am so grateful for this match, because it’s offered me a great deal of happiness in my life.”

She said she lives every day thankful for her donors.

“There’s gratitude with every breath, I think especially with a lung transplant. And there’s no way of getting around it.”

This gratitude and graciousness seems to be an identifying characteristic of Tillemann-Dick. Her doctor, Cleveland Clinic pulmonologist Marie Budev, said Tillemann-Dick has been this way since the two met in 2009.

“The way she has walked, crawled, run through both transplants and all the complications has always been with such grace and class and such empathy for those around her,” said Budev.

In “The Encore,” Tillemann-Dick retells her entire experience in sometimes excruciating detail and allows readers to see the world through her eyes and to feel her drive to continually move forward. She digs deep, detailing the agonizing recovery process after her first transplant and the emotional toll these experiences had on her and her family.

“I knew that if I didn’t tell my story, either somebody else would or nobody would,” she said about the decision to write a memoir. “And so I wanted that opportunity.”

The singer-turned-author’s life has not been short on tragedy and trial, even setting aside pulmonary hypertension. Along with double lung transplants in 2009 and 2012, she was diagnosed and treated for cancer in 2015. Before her first transplant, she and her family endured the deaths of her grandfather — California congressman and Holocaust survior Tom Lantos — and father within a year of each other. Throughout all this difficulty, Tillemann-Dick professionally trained her voice, sang in prestigious venues and married her husband, Yonatan Doron.

“I felt like at some point, my life was superimposed into some sort of epic, operatic plot,” she said. “It bore more resemblance to the roles I’d sung than other real lives I’d heard about.”

However, reliving the painful events of the past several years as she wrote was more difficult than she expected.

“I probably should have thought about this before I agreed to write a book, but it was extraordinarily painful,” she said. “It was far more emotionally and physically taxing than I could have imagined. Now the results are really wonderful.”

Seeing the “wonderful” results in any situation is part of what makes the singer — whose full name is Charity Sunshine Tillemann-Dick — who she is, said her sister Kimber Cook. Cook said when Tillemann-Dick was diagnosed, the two sisters cried together all night.

“We grieved together, and then in Charity Sunshine fashion, she buckled down and she got to work,” Cook said. “And just staying alive took incredible work. It has taken such tenacity and fortitude and perseverance and grit and resilience. Because she hasn’t just stayed alive; she has been truly happy, I think, and she has given back to so many people.”

Living through music

Tillemann-Dick names her desire to sing as a driving factor in her resilience. She has loved opera since she was a child, and she was motivated to sing on the world’s greatest stages, pulmonary hypertension — and then new set of lungs — and all.

“It gave me something to live for, something I really wanted to do and something I felt I was called to do,” she said.

Budev said Tillemann-Dick’s fortitude and desire to keep singing has always fascinated her. She remembers calling Tillemann-Dick with news that lungs were available for a transplant. Tillemann-Dick herself was somewhat breathless from illness and couldn’t speak, but her mother, Annette Tillemann-Dick, was there and jumped in to finish her sentence and tell Budev that Tillemann-Dick needed to sing for the Dalai Lama the next day.

“When you’re talking to someone like this and they tell you they have to go sing for the Dalai Lama, you think, ‘Who are you?’” said Budev.

After each transplant surgery, Tillemann-Dick worked hard to retrain her voice and continued to be a successful opera singer.

“It’s really important to have things that we’re passionate about and that we can wake up in the morning and be excited to do,” she said. “Find those things in our lives of beauty and joy that create meaning and wonderment in the world.”

Living through faith

https://www.youtube.com/watch?v=u2aDCjIeFy8In addition to singing, Tillemann-Dick’s unstoppable drive comes from her faith, which her sister described as “deeply nuanced.”

“She is a profound thinker,” Cook said.

Tillemann-Dick herself said faith has always been a part of who she is.

“From the time I was young, faith was a spiritual gift I was given,” she said. “It came with the package. And it helped me to know that whatever the outcome was, whether it was good or whether by the world’s standards it seemed bad, that I would find my purpose within that journey.”

Tillemann-Dick was diagnosed with pulmonary hypertension as she filled out her application to serve a mission for the LDS Church. Because of the diagnosis, she was unable to serve her mission, but was able to receive treatment to make the disease more manageable.

“My desire to serve a mission saved my life,” she said. “And I think that my desire to sing saved my life again.”

Through everything, Tillemann-Dick has relied on her relationship with God, even when she didn’t feel as close to him as she wanted to feel.

“I think that’s an experience a lot of people have, feeling and wondering, ‘Where is God when I need him most?’” Tillemann-Dick said. “I think he’s there but it’s not necessarily in the way or form that we think we need him. But in the end, all things do turn toward good.”

Whatever the mix of experiences and characteristics that allowed her to do it, Tillemann-Dick has persevered through impossible odds and continues to live her life in the best way she can.

“There were so many times when I thought, ‘It’s too much. She can’t take anymore. It’s too much,’” said Cook. “And the incredible thing is, for me, that she just grows to face whatever challenge is in front of her. And she does it with grace.”

Today Tillemann-Dick spends her time singing and speaking, having spoken on the TED stage and been interviewed by NPR and the Washington Post, among other media outlets. She also works with Budev and others to increase awareness of the need for organ donors and to inspire people with her story.

“My life is sort of like this dream I would have never had for myself, but in a lot of ways, it’s better,” she said.