Charity Sunshine Tillemann-Dick does not hold back when discussing her life.
Perhaps it is because of her background. She comes from a family who has spent their lives in the public eye. She is one of 11 siblings, a group of child prodigies, who have been described as “The Royal Tenenbaums” of Denver. Tillemann-Dick chose music as her field to excel in, and performance is another way that she bares herself to others, which makes talking to strangers seem easy.
More than anything else, her openness could also be the result of medical necessity, which forced her to share nearly every detail of her life with a team chest physicians, whose combined skills literally saved Tillemann-Dick’s life.
At 18, Tillemann-Dick had the next stage of her life already planned. She was going overseas to be a missionary. It was not a difficult choice for her as she was following in the footsteps of other members of her family. Everything seemed normal, or at least as normal as being a member of her family could be.
It started with fainting spells, but people faint she reasoned. Her parents had similar episodes in their lives. So she brushed it off and went into her medical check-up before leaving on her mission thinking it was a formality to check off her list before leaving.
“I thought I was perfectly healthy until I found out that I wasn’t,” she says.
At the check-up the doctor discovered an irregular heartbeat, which meant more tests and eventually, a diagnosis of pulmonary arterial hypertension (PAH), a thickening of the endothelial cell lining in her lungs. A future that seemed so certain before was no longer so. Tillemann-Dick knew that the course of her medical life had been altered, but she now had a new mission— to make sure that the diagnosis did not derail the rest of her life.
"I thought I was perfectly healthy until I found out that I wasn't."
The first part was getting healthy, a task that proved to be impossible as she lived with PAH for the next 5 years. During that time she became an advocate for other patients with PAH, while embarking upon a career path as a soprano singer that her health was putting into jeopardy.
Music had been her love since she first began singing in the choir with her siblings. She had thought about other careers as an advocacy attorney or possibly a career in politics like her US Congressman grandfather or her Lt. Governor of Colorado grandmother, but it was music that won her over and helped to drive her to improve her health.
After 5 years she received word that a lung transplant was on the way. And in 2009 she underwent the taxing surgery at the Cleveland Clinic. She was lucky to receive the lungs at all given the huge backlog of patients needing organs, but what appeared like an end to her struggles proved to be only another trial. Her body rejected the lungs.
At that point in her life Tillemann-Dick thought that her dreams would be unfulfilled because she would not be well enough or live long enough to realize them. So she prepared herself as best as she could, while holding out hope for another lung transplant.
It took months, but it happened. It was a miraculous occurrence for her, but she received and this time did not reject a second pair of donated lungs. The stress and pain of the transplants had been worth it, but in a cruel twist she received another medical setback.
“Cancer—I understand why people say it sucks,” she says. “A lung transplant is physically challenging. Cancer might be more psychologically challenging.”
Tilleman-Dick’s cancer is in remission, but it is another part of her medical life that she has succeeded in separating from the rest of her life, a life where she has piled up accomplishments. She studied music at the Peabody Institute at Johns Hopkins University and as a Fulbright Scholar at he Franz Liszt Academy of Music in Budapest, Hungary. She has given TED talks and appeared on many different television stations including CBS, CNN, and the BBC. Now?
“I mostly do concerts, and I speak with the audience,” she says. “I am like Garrison Keillor, (creator of A Prairie Home Companion), of all people. He tells these wonderful stories.”
"Doctors have a really hard job. I like to let them see that even when the road is bumpy there are people who are living their lives because of what they do.”
One of the next places where Tillemann-Dick will tell her own wonderful story will be as a keynote speaker at CHEST 2016.
“I love talking to doctors because I have consumed so much of their time, so it’s giving back in a little way,” she says “There are a lot of medical terms (in her talks) so it’s like a medical education that goes on when I speak. There is a lot of information that they understand. Doctors have a really hard job. I like to let them see that even when the road is bumpy there are people who are living their lives because of what they do.”
Tillemann-Dick’s life story continues because of her doctors, but it was not only saving her life that has allowed her to tell her story in her own way. It is also because her doctors cared about her quality of life, and they helped to make sure that she would not only survive PAH and cancer, but also to do so with her voice intact.
“It can be easier to look for doctors to look at their patient as just a patient rather than who they are as an individual,” she says. “I never had that happen to me. My doctors are the reason I can still sing. They took my livelihood and my happiness into account with my care. Patients who are happier are going to be healthier. Diseases are not separate from a patient’s psychological health.”
It’s a voice lesson that she will continue at CHEST 2016.
Watch Charity's TED Talk: