On Oct. 17, 30-year-old opera singer Charity Sunshine Tillemann-Dick stood onstage at Chicago’s opulent Cadillac Palace Theatre and in a big, dexterous voice sang “Je Veux Vivre,” the famous waltz from the opera “Roméo et Juliette.” She was singing with her third pair of lungs.
“I’ve spent many a night in death’s guest house, its wind rattling the windows, wondering when I was going to move into the main residence,” the coloratura soprano told the rapt audience of 1,500, a radiant smile never far from her lips. “Right now, my life is a very literal continuation of the premature end of two other lives.”
That’s why she was at the theater, invited there as part of the Chicago Ideas Week innovation conference. She was there to speak about her success story — and why in the United States there aren’t more stories like it. While 90 percent of Americans approve of organ donation, only 42.7 percent have signed up to do so. Because of the discrepancy, nearly 7,000 Americans die waiting for organs each year, roughly 18 per day.
All attempts to solve the problem through politics or advocacy campaigns have failed. That’s why to revolutionize organ donation, Tillemann-Dick is relying on simpler tools, ones that might prove more powerful: her voice, and her tale of life and death.
“You have to stop singing.” That’s what the lung specialist told Tillemann-Dick. It was June 2004, and recently, after trouble breathing and fainting spells, she’d been diagnosed with pulmonary hypertension. The rare condition, affecting one in 100,000 to 1 million people, and mostly women in their 30s, was causing the arteries in her lungs to thicken, forcing her heart to work overtime to push through the blood. Eventually, her heart would give out.
The dire diagnosis didn’t fit such a vivacious young woman. Her name, Charity Sunshine, after all, was fitting. “She always had a radiance about her,” says her mother, Annette — a zest for life that seemed unquenchable. But according to doctors, Tillemann-Dick was already at Stage 4 of the disease. That meant she likely had two to five years to live.
Her death could come sooner, the specialist told her, if she sang. The effort would be too much on her lungs.
For Tillemann-Dick, however, singing was everything. Growing up the fifth of eleven children in a large, Mormon household in Denver, she’d attended the opera “Hansel and Gretel” at age 4 and had fallen in love. The musical pyrotechnics, the grand themes, the way the performers laid bare their emotions through song — “I just thought it was miraculous,” she says. So she joined the Colorado Children’s Chorale and eventually took private voice lessons. She had planned to pursue public advocacy, a family tradition. Her mother’s father was celebrated Democratic U.S. Rep. Tom Lantos of California and her father’s mother was former Democratic Lt. Gov. Nancy Dick of Colorado. Instead, Tillemann-Dick stuck with singing, eventually enrolling at Budapest’s Liszt Academy of Music.
Her diagnosis cut short her Liszt Academy tenure, but she wouldn’t let it silence her. “As air came up through my lungs and through my vocal chords and passed my lips as sound, it was the closest thing I had to transcendence,” she says. She acquiesced to her doctors’ other recommendations, like avoiding Denver with its medically problematic high altitude, moving instead to Washington, D.C., close to medical specialists. And she took Flolan, a medication pumped through a tube into her heart, which was painful.
But she never stopped singing.
She continued her musical studies, this time at the Peabody Institute of the Johns Hopkins University, and performed at venues like the John F. Kennedy Center for the Performing Arts in Washington, and Severance Hall in Cleveland — all with her Flolan pump strapped surreptitiously to her leg. When word spread about her condition and U.S. singing opportunities seemed to evaporate, she got a fellowship in Florence, Italy, and continued her voice lessons there. Meanwhile, after she became a spokeswoman for the Pulmonary Hypertension Association in the spring of 2006, she lobbied at U.S. congressional hearings for increased funding and expanded stem-cell research to help find a cure for her condition. But thanks to typical congressional dysfunction and political paralysis over stem cells, her efforts seemed to do nothing other than leave her feeling alone. “It is so much worse than cancer or AIDS, where there is some hope of survival,” she says of pulmonary hypertension. “And people still don’t seem to care.”
In 2008, everything fell apart. Tom Lantos, her grandfather, passed away, then her father, Timber, died following a car crash. The toll seemed too much for Tillemann-Dick. Her health deteriorated, and by September 2009, there were no options left. She needed a double lung transplant, a procedure she’d been desperate to avoid. “I wasn’t ready for that final option,” she says, noting that lungs, because of the delicate tissues involved, entail some of the lowest survival rates of all transplants, with the median survival rate for double lung transplant recipients just 6.6 years. Ready or not, a day after being listed on the transplant waiting list, she scored a match — an unexpected development, considering the median wait time for new lungs is 141 days. (Asked why she was able to get her transplant so quickly, Tillemann-Dick attributed it to “my age, the severity of my illness, and chance.”) She was flown to the Cleveland Clinic in Ohio and prepped for surgery. There wasn’t time to wait for her mother to arrive so she could say goodbye.
The last thing she said to her surgeon before the anesthesia kicked in was, “Please try to save my voice.”
The surgery was worse than anyone expected. During the 13-hour operation, Tillemann-Dick flat-lined twice and had 40 quarts of blood pumped into her body. Her surgeon later told her mother it was among the most difficult transplants he’d ever performed.
When it was over, Tillemann-Dick lay in a coma. While her family waited in the hospital to see if she’d awaken, they witnessed firsthand the harsh reality of the nation’s organ deficit. “We saw all these other people waiting in hospital beds for organ donations and dying when they didn’t arrive,” says her younger sister Glorianna, then 16.
There are more people waiting all the time. According to U.S. Department of Health and Human Services, in 2009 there were 105,567 Americans on the organ waiting list, up from 71,628 in 2000. Someone new appears on the list every 10 minutes.
Once Tillemann-Dick awoke after 34 days in a coma, her sisters Glorianna and Mercina, 17, decided to do something about changing organ donation. It didn’t matter that they were so young; their opera-singer sister was far from the only one in the family who wowed and amazed at a young age. Home-schooled by their mother, the 11-child clan had enrolled in universities like Yale and Johns Hopkins when each was about 15. Tillemann-Dick’s oldest brother, Tomicah, was a speechwriter for former Secretary of State Hillary Clinton, and several other siblings have worked for various federal agencies. Revolutionizing organ donations? For the Tillemann-Dicks, it was all in a day’s work.
And Glorianna and Mercina knew how to go about it.
In 2003, psychologists Eric Johnson and Dan Goldstein, of the Center for Decision Sciences at Columbia University, scrutinized organ donation rates for various European countries, comparing the rates for opt-in systems (meaning no one is an organ donor unless registered to become one) with those for opt-out systems (meaning everyone is automatically a donor unless registered not to be). “We were very surprised by the results,” says Goldstein: Countries with opt-in systems, like Germany and the United Kingdom, all had rates below 30 percent. Opt-out countries, however, all had rates above 85 percent. In one opt-out country, Austria, 99.98 percent of people were donors.
“It was an early demonstration that simple behavioral interventions might have a big effect on actual behavior,” says Goldstein. “Some things we avoid thinking about because they are unpleasant, and the default choice might help us reach an opinion about the myriad things we have to make our mind up about in modern life.”
In each U.S. state, the default is you’re not an organ donor unless you opt in. In Colorado, Glorianna and Mercina decided to try to change that. In 2010, they took a year off from school to craft opt-out, or “presumed consent” state legislation. The resulting bill included safeguards to ensure no one would end up a donor who didn’t want to be. “It was a very soft opt-out,” says Glorianna. They lined up co-sponsors for the bill and had bipartisan support. Then the legislation hit the news.
One article called the bill “organ harvesting.” Another labeled it “organ conscription.” There was hardly any mention of the young girls who proposed it, or their opera-singer sister who had inspired it. Local organ-donation organizations came out against the measure, fearing backlash would inspire current donors to change their minds. Amid the controversy, lawmakers pulled the bill. “It was really demoralizing,” says Glorianna. “I think we were focused so much on the politicians, we didn’t realize they were beholden to their constituents. And when the constituents heard ‘presumed consent’ or ‘opt-out,’ they got upset very quickly, and that’s where we failed.”
All attempts to create state opt-out organ programs have met with failure, says Joel Newman, assistant communications director for the United Network for Organ Sharing (UNOS), a nonprofit group that oversees the nation’s organ transplant system. He believes that’s largely due to the country’s emphasis on individual rights. “If someone does not want to think about it or not make a decision, people think that’s okay,” says Newman. “Many don’t want a mechanism that forces them to decide.” It’s one of the reasons Obamacare’s plan to have everyone make decisions about their health care has met fierce opposition. Compared with that, a government plan to make everyone consider their own death seems like a nonstarter.
Then how do you get people to become organ donors? Unlike other good deeds, e.g., donating money, there are no encouraging results for your generosity, no one to thank you for your charity, until after you’re gone. “Is the answer to force someone to do it? Is the answer to guilt people into it?” asks Newman. “It’s a different sort of appeal and that’s what makes it a lot more difficult. It’s not something you do to save or enhance your own life.”
It’s why some people are creating incentives for organ donations, such as LifeSharers, a nonprofit network of donors who pledge to give fellow members first dibs on their organs when they die. “I would love nothing more than for UNOS to bring in what we’re doing and put us out of business,” says David Undis, founder and executive director of LifeSharers.
Such a move has precedent. Israel, which had extremely low organ donation rates, recently started giving donors priority if they needed an organ themselves. The plan seems to be working: In 2012, the country had 717,300 registered organ donors, up from 516,055 donors in 2009, before the law went into effect.
But it’s unclear whether LifeSharers will have such an impact. Since the network launched in 2002, none of the 15,486 people who’ve become members have died and therefore had the chance to donate their organs.
While her sisters were facing organ-donation policy head-on, Tillemann-Dick was dealing with her own ups and downs. After her coma, she had to relearn to breathe, talk and walk — but the surgeons had remembered her request: They’d saved her voice.
Eight months after her operation, she proved it by performing a concert at the Cleveland Clinic, an event that generated news nationwide. But shortly thereafter, she could tell something was wrong. Her lungs were failing.
In July 2011, Tillemann-Dick was relisted on the organ waiting list for a second double lung transplant, a new and very rare procedure. This time, there was no immediate match. While she waited, on Sept. 21, 2011 she gave what she calls “the greatest performance of my life, on the world’s greatest stage”: She sang “Sempre Libera” from “La Traviata” at the Rose Theater at New York’s Lincoln Center for the Performing Arts. That weekend, she married Yonatan Doron, a staffer at a nonprofit think tank who had been with her since 2006. Throughout it all, she could barely breathe.
“There were all these beautiful, wonderful things in my life, and I was dying,” she says. Eventually she could no longer walk. “It was just so difficult to breathe, I couldn’t think of anything else,” she says. “Night after night after night, I didn’t think I could survive another day of this.”
Finally, six months after she had been relisted for a transplant, while she was in the hospital and hovering near death, she scored a match: a 48-year-old woman who had loved to sing.
Tillemann-Dick’s second double-lung transplant was easier than her first. Within a week, she was breathing on her own, and a few months later, she was singing publicly. Now she does so with an ambitious purpose: to change how America deals with organ donation. “It’s my duty to help change this,” she says.
Now when she sings all over the world, she doesn’t hide her medical struggles, she makes it part of her story. She tells her audiences how her voice would have been silenced if not for the deaths of two others. She performs and speaks at conferences and galas and health care summits. She’s become a staple of TED talks around the country, videos of which have become YouTube hits. She’s releasing a collection of hymns on CD called “American Grace” and is composing a song cycle based on the writings of Katie Enos, a 14-year-old whose organs went to four recipients when she was hit by a car in 2010.
If the government can’t convince people to donate their organs, maybe Tillemann-Dick can do so through her voice. “This is our responsibility as artists: We need to speak up,” she says. She’s taking a page from “The Laramie Project,” a play about the murder of gay student Matthew Shepard that’s performed at schools nationwide to combat homophobia, using art to confront subjects otherwise off limits. Yes, she says, she’s not crafting legislation affecting millions of people, but up onstage, “I can control my message.”
That message, more than anything else, is that we are all going to die. That’s what her sisters’ failed opt-out bill taught her: “Before we can expect Americans to accept changes to the organ-donor structure, we need to start a meaningful dialogue about death,” she says. That’s why she recounts her repeated dances with her own mortality, not as a warning, but as a celebration. It helps that she’s an opera singer, trained in triumphant elegies and magnificent dramatic demises. “Our ability to be at peace with death allows us to accomplish things,” she says. “We are here to create a legacy. And what more beautiful legacy can you leave than life and love and charity and selflessness?”
And this is why, while she knows her new lungs might still fail at some point, she sees her own death, whenever it comes, not as a limitation, but as inspiration. “Isn’t that the point, to live and die in a way where we have peace, where we share the best of what and who we are — whether it be wisdom or a kidney?” asks Tillemann-Dick. “Regardless of your beliefs, that is immortality. In some way, that’s what we all are seeking.”