Finding My Voice Again

Words by Ashley Hurst

Photos by Anne Robert

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A singer who lost her lungs.

A performer who lost her face.

A woman who overcame impossible odds.

Charity Tillemann-Dick’s faith and creative spirit inspire and motivate her to overcome impossible odds. Then again, it seems to run in the family—her grandparents were Holocaust survivors. She jokes about growing up with a family attitude of, “If someone's not actively chasing you and trying to kill you, then you're doing OK.”

When Charity was 18, her family took a trip to Hungary to celebrate her grandfather’s 75th birthday, and it was during this trip that Charity had a life-changing opportunity—she auditioned for and was accepted at the Franz Liszt Academy of Music in Budapest. “With 11 brothers and sisters, I always felt like I was just trying to keep up. Here, I was finally in a place where I could truly be successful.”

Charity put her all into her studies, but soon her body betrayed her. She felt as though she was falling apart. “I was exhausted all the time, and my heart would beat so hard and so loudly that it would keep me awake at night.” She blamed her poor health on herself, thinking, If I just exercise more and change my diet, I’ll get better.

She also thought a shift in focus might help her health. “I decided to go on an extended mission trip with my church, and it actually saved my life.” Due to the length of the trip, Charity had to fill out a very complicated medical form. As she filled it out with her doctor, she began talking about the health struggles she’d experienced recently. It didn’t take long for her doctor to diagnose her with Idiopathic Pulmonary Arterial Hypertension (PAH), a rare disease, the cause of which is unknown. This severe and progressive disease causes increased thickness and high blood pressure in the arteries connecting the heart with the lungs, ultimately causing heart failure. With this diagnosis came the shocking news that Charity likely had, at most, five years to live. “Everything suddenly felt so real and precious and vivid,” she says.

Charity and her doctors worked to stabilize her health, and in 2006, Charity received a fellowship to return to Europe. “I didn’t tell anyone in Europe about my health issues though. It’s difficult to get cast in any productions when the conductor is afraid you might die in the middle of the show.” She laughs as she says it, but I can hear the pain behind her words.

At the end of 2007, Charity’s grandfather was diagnosed with cancer. She scheduled a trip to see him ten weeks later, but after only eight weeks he went to the hospital with pneumonia and died. Two months after his passing, Charity was debuting in a show in Berlin when she got the news that her father had been in a fatal car accident. “It didn’t seem real. The two patriarchs of the family passed in a time when it seemed everyone was waiting for me to die.”

The losses were devastating, creating a time of extreme emotional turmoil. And with that turmoil came a decline in Charity’s physical health, resulting in her first double-lung transplant.

It was an incredibly difficult surgery that left Charity in a coma for 34 days. When she awoke, she was unable to move, talk, eat, or even breathe on her own. But she was determined not to let it keep her from singing, and she threw herself into physical therapy and retraining her new lungs. Charity returned to singing, and she also began doing some public speaking, working to raise awareness and increase research funding for PAH.

Then, in 2011, her health began to decline once again as she struggled with complications from transplant rejection. She returned to the transplant list and soon underwent a second double-lung transplant.

It was after her second transplant that Charity found herself with a strong desire to create a legacy. “I needed to have something that would last beyond my own life,” she explains. “And the creative process makes me feel unlimited as a human being. My health doesn’t hold me back. As I researched and composed, everything else fell away. My experiences added depth and meaning, but they didn’t define me. And I was able to produce music that was more true and more creative and that I felt really embraced the human experience.” Her debut album, American Grace, was released on July 4, 2014, and reached #1 on the Traditional Classical charts on Billboard.

As she prepared to write her memoir, things were looking up.

Then, in January of 2016, Charity noticed a pain in her jaw. A few days later there was a knot the size of a pinhead she could feel under the skin. And less than three weeks after that, the pinhead was the size of her fist. She had skin cancer, and she would undergo invasive surgery to remove it. Because of the location of the tumor, they had to cut a nerve in her face, causing partial paralysis that she would then undergo therapy to improve. “So now I wasn’t only a singer who had lost my lungs, I was a performer who lost my face.”

She goes on to say, “Following both transplants I was known for my ‘angelic awakening.’ After those surgeries I was just so grateful. But this time I was not grateful. I felt like my face had helped create my career—and my life, really—and I had lost that. It was devastating.”  

The next challenge Charity faced was the press tour for her newly-released memoir, The Encore. “I was used to being on stage. I loved being on stage. But this time it was different. I was nervous in a way I had never been before because I looked so different.” Sadly, it was a well-founded nervousness. Since completing her chemo and radiation treatments, Charity had found herself being treated differently. “Let’s be honest—I used to be vain. Then I was refused service at a restaurant. That had never happened to me before. But because of my appearance—because I looked like a meth addict— they turned me away. Because of my appearance I was, more than once, followed home by police officers. It was an illuminating and humbling experience. And it created knowledge, not just sympathy. I can understand now, first-hand, what other people have gone through.”

The fullness of this realization came to Charity as she was standing in the middle of the street—an activity she does not recommend—looking at a large stained glass image of Jesus. She stepped into the street, gazed up at it, and said aloud, “I love you Jesus, but what’s going on here? I’ve tried to be a good person …” and the realization settled in her mind and on her heart—through this, I can more fully understand the experiences of others. “I realized that, instead of being intimidated, offering help and love is where we can find our purpose,” she explains. “Everyone has struggles, challenges, and trials, and they’re all different. But resilience comes from reaching out and figuring out what you can contribute.”

As I spoke to her, listening to her share her incredible story with joy and laughter, she was on her way to yet another doctor’s appointment; her struggle with skin cancer isn’t over. Every day is a challenge, but one she faces with faith, resilience, and determination to make the world a better place through her own contributions—her music and the sharing of her story.