Music

Music is now a lifeline for ailing opera singer

Art is literally life for Quincy’s Barbara Quintiliani

First of two parts. Part two will appear next Sunday.

The church was packed, the 198-member chorus seated, and the orchestra ready to launch into Verdi’s Requiem. Barbara Quintiliani, the star, walked tentatively up the three stairs leading to the stage. She wore a wrap to help conceal the scars on her chest and arms, a reddish wig to hide her thinning hair.

The Quincy-born soprano, 35, has been known for her spectacular voice, a powerful, soaring instrument that critics have likened to molten gold or gleaming steel. Quintiliani has sung at the White House, shared the stage with Placido Domingo, won prestigious national and international competitions, and wowed audiences with starring roles in Boston, where she attended New England Conservatory.

But she had a secret, something not even the conductor in the Arizona church knew. Just 12 days earlier, she had been recovering at UMass Memorial Medical Center in Worcester after passing out in her downtown Lowell apartment. It was the latest setback in a year of misfortune - and a lifetime of struggle. She had considered canceling on Arizona MusicFest.

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“But once you cancel a performance,’’ her husband, Stewart Schroeder, cautioned, “it becomes a lot easier to cancel others.’’

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So here she was at Pinnacle Presbyterian Church in Scottsdale, nervously waiting her turn, hoping to marshal the reserves to not only perform, but perform at the highest possible level. “Deliver me’’ she would sing, in Latin, in the Requiem’s closing “Libera Me.’’ “I quake with fear and I tremble.’’

Quintiliani has made her name by taking on operatic roles that many others wouldn’t touch, demanding parts that require energy, passion, and precision.

“The Verdi soprano the world has been waiting for,’’ raved former Globe critic Richard Dyer after one performance in 2004, predicting that “she could become one of the great international stars of her generation.’’ Dyer cited her “true diva glamour’’ in Donizetti’s opera “Lucrezia Borgia’’ in 2006, noting that she “blazed through the title role . . . and left the audience on its feet, screaming and shouting.’’

Quintiliani’s 2009 turn in the title role of “Maria Padilla’’ at the Wexford Opera House in Ireland was a triumph that would have launched many to stardom. With her voice, she could be singing at New York’s Metropolitan Opera or La Scala in Milan.

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But illness has derailed Quintiliani’s promising career, forcing her to miss scores of auditions and months of performances. The Verdi Requiem was her first time on stage since July. In fact, she had gone weeks at a time without singing a note.

That’s why the Arizona gig was important. So are her May 5 and 6 performances of Mahler’s “Resurrection’’ Symphony No. 2 with the Cape Cod Symphony in Hyannis.

“You do worry,’’ Quintiliani said in an interview, her voice choking up. “I worry every time because of all the drugs they put in me. That it’s going to be over.’’

On stage, Quintiliani is intense and focused. Off stage, she’s understated, dry, and self-deprecating. In an industry often ruled by imperious divas, Quintiliani’s approach brings to mind a stand-up storyteller like Roseanne Barr.

Her attitude has helped her work through a striking series of personal obstacles. Raised by a mother who acknowledges struggling with alcoholism and mental illness (she is now sober and receiving treatment), Quintiliani was sexually abused by her stepfather - something he fully admits - and grew up in abject poverty in a rootless, rambling childhood that led from her hometown of Quincy to Florida, Virginia, Texas (twice), Rhode Island, California, New Jersey, Washington, D.C., Maryland, and even Guam.

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Music would be her way out of the darkness, a gift no one could take away.

“If I didn’t have singing, I wouldn’t be able to live,’’ Quintiliani says. “It’s such a catharsis. It’s visceral. I get to go out onstage and scream. That primal sound that comes from way down deep. I know this sounds so ‘Wind Beneath My Wings,’ and don’t throw up in your mouth. But it’s the truth.’’

Maintaining a voice

That special voice is under assault.

Quintiliani has been diagnosed with an extremely rare combination of two autoimmune diseases: multiple sclerosis and Churg-Strauss syndrome, a sometimes fatal condition in which blood vessel inflammation can permanently damage vital organs. Symptoms include extreme fatigue, numbness, asthma, muscle spasms, and problems in the heart, kidneys, and intestinal tract. Normally, doctors treat patients who have Churg-Strauss syndrome with drugs to reduce inflammation, particularly prednisone.

For Quintiliani, however, it is a risky regimen, one she tries to avoid. Vocal cords vibrate when you sing, becoming engorged with blood. That, in turn, creates the rich and resonant sound that defines a singer. The medicines meant to make her body stronger only weaken her voice.

“Treating Barbara so that she could live and become an accountant but not sing wouldn’t be as successful as treating her and allowing her to sing and bring joy to audiences,’’ says Jonathan Kay, one of her doctors.

As long as her voice is spared, Quintiliani has been willing to try almost anything, from chemotherapy drugs to Botox shot into her legs to ease the MS symptoms. One morning last year, Quintiliani reported to UMass Memorial Medical Center for a treatment called pheresis.

Even for this, Quintiliani dressed in style. No sweatpants and Uggs. She wore dangling earrings, red glasses, and makeup. Reaching across her glittery black shirt, Quintiliani showed off the catheter that had been inserted into her body; it would connect to a machine that cleanses her blood.

“This is sort of a little black magic, if you will,’’ she said, and laughed. “Taking the bad humors out of the body. They’re bleeding me, how medieval.’’

Seven years have passed since her doctors delivered the MS diagnosis. For a time, Quintiliani and Schroeder felt they could manage the disease. They also tried to keep it secret, fearing opera companies would be loath to hire somebody who might have to drop out of a production.

Then, two years ago, the soprano, struggling with new symptoms, learned she also had Churg-Strauss syndrome. You can live with the condition for years, or it can kill you.

Quintiliani doesn’t like to think about that. In fact, she’s been trying to stop fixating on her health, even as there have been times she had to climb out of a wheelchair to get onstage. That happened just last year, when Quintiliani played the title role in Opera Boston’s “Maria Padilla.’’ The Globe’s reviewer noted that despite her reported illness, she delivered “utterly beautiful singing.’’

“I got some really good advice from a wonderful friend who said, ‘Don’t act like a sick person,’ ’’ Quintiliani said. “I’ve tried to act like a person who has a job and a family - and by the way has to deal with this other pain-in-the-behind thing. I’m trying not to let it rule my life. It’s hard not to. Because some days, it’s a real decision to get out of bed.’’

Born to sing opera

Quintiliani sang at home growing up, but didn’t sing an aria until she was 16, when a high school music teacher persuaded her to try. It was an eye-opening performance. She scored an audition and then a scholarship to the Governor’s School for the Arts in Norfolk, Virginia.

That’s where Sondra Gelb, a voice teacher just back from a performance with New York City Opera, met Quintiliani.

“I was told, ‘We have a present for you,’ ’’ Gelb recalled. “The voice was stunning. She was incredibly smart, had a great sense of humor, and just sounded like she fell out of the womb ready to sing Verdi.’’

She didn’t. The music of her childhood home was Aerosmith, Led Zeppelin, and Queen - the records her mother played.

She never went to the opera or even listened to the Met on the radio. Her focus was on surviving. Quintiliani was born into chaos and would spend much of her childhood desperately trying to escape it.

A typical story, which she tells today with her tone of detached bemusement:

In sixth grade, she, her mother, and her younger brother, James, lived in a trailer in Florida with no running water or electricity. One day, she came home from school to find a limousine waiting.

The car, sent by a man her mother had met, whisked them away to a beautiful house inside a gated community. She was given a credit card, tennis lessons, and a new wardrobe. And then two months later, Barbara and James returned from school and found their “home’’ surrounded by police cars. Their mother was sitting in the back seat of one. She waved, giggling, sipping a can of soda. She would be released, and they all returned to their trailer.

“The man was a grifter, a con man, and we were his cover family,’’ Quintiliani explained. “My brother and I looked at each other like, ‘Oh well, that’s over.’ ’’

The dysfunction started long before Quintiliani was born in 1976.

Her parents say it started with her maternal grandmother, Florence White. “Chickie,’’ as she was called, was an abusive, mentally ill woman, they say. White took particular aim at Quintiliani’s mother, Jean, one of her seven children. The damage was so severe that she no longer goes by Jean, the name she associates with so much pain. She is Rachel.

Quintiliani’s mother, a high school dropout, married at 18 and divorced in 1980. When she remarried, her new husband adopted Barbara and James. Barbara’s stepfather, Daniel Simon, sexually abused her. “It’s probably my deepest regret in my life,’’ he said in an interview last week from his home in New Jersey. “I made sure it never happened again through counseling, but I feel terrible and hope it hasn’t scarred her.’’

It did, leading to nightmares, years of pain, and eventually therapy. Meanwhile, Quintiliani’s mother began drinking so heavily she would disappear for days.

“One time,’’ said her mother, who eventually fled her second husband, “I ended up in Georgia. I had to call friends to get me.’’

The power of music

On a Sunday morning in October, Quintiliani headed to New York City with Schroeder behind the wheel. Because of her illness, the couple has come to rely on Schroeder for more than rides. He’s also now their source of financial stability. He works for a credit card company, arranging travel, dinner, and other courtesies for wealthy clients.

Schroeder, 33, met Quintiliani at New England Conservatory, where he was studying bassoon. He is a large man, 6 foot 3, and his ponytail gives him a resemblance to the outspoken illusionist Penn Jillette. Schroeder is a quietly persistent advocate for his wife, whether dealing with doctors and concert programmers or simply driving her to appointments. In the hospital, he taps out messages on his laptop as she rests. Classical music also fills their partnership; he will often play piano when Quintiliani practices.

On this trip, Schroeder was to deliver his wife to Bill Schuman’s studio on the Upper West Side. The renowned teacher has worked with countless singers for the Met, as well as Broadway performers and others, including pop star Michael Bolton.

Quintiliani wasn’t just seeing Schuman to work on her chops. She had heard the rumors. That people think she’s too sick to perform. That she might even be near death.

This trip to New York, she hoped, would go a long way toward dispelling that.

In the car, Quintiliani put on her makeup. At a stop at a Dunkin’ Donuts, she asked for a breakfast sandwich, but she could only nibble. Chemotherapy has sapped her appetite. In fact, Quintiliani’s weight continues to yo-yo. After her MS diagnosis, steroids added nearly 100 pounds to her already full 5-foot-2 frame. She’s lost that 100 in recent months due to the chemo.

The toll stretches beyond the physical. The couple has had the kinds of hard discussions few young couples face.

A drug given to suppress the MS damaged Quintiliani’s ovaries, taking away their chance to have children. And they’ve had to contemplate the worst-case scenario. A legal health care proxy grants Schroeder full authority to make decisions about Quintiliani’s health.

“Having Churg-Strauss feels like having a Sword of Damocles hanging over your head,’’ he said. “You know there’s impending doom coming, but you don’t know exactly when it’s going to transpire.’’

“MS,’’ says Quintiliani, from the back seat, “is the least of my worries.’’

During the ride, her eyes grew heavy, her voice slurred, and she nodded off. Quintiliani, who worked three jobs to get herself through school, who loved going out with other musicians after performances, who did all the cooking and cleaning when she and Schroeder were first married, is always exhausted. Sometimes she’ll sit down on the couch and wake up six hours later, wondering why it’s dark out.

Music, though, still has the power to revive her.

What was she expecting to get from her voice lesson that day?

Honesty she said as they approach New York. It would be an important test after not singing for weeks.

“I’m not paying Bill $160 an hour to blow sunshine up my ass,’’ she said. “Some people are babies. They can’t handle the truth. They want to be told they’re wondrous and everything they do is wonderful. Here’s the thing. There’s going to always be someone who can sing higher, faster, louder, slower, softer, and better than you, so get over your damn self.’’

She’d perked up, thrilled to talk about something other than blood cell count or the latest chemo drugs.

“You start working on a new role,’’ said Quintiliani, “and what you’ve done is move some dirt aside and put the little seed in the hole. And then everyday you water it and nurture it, it starts to grow. That’s how I feel about singing. It’s that constant gardening. I’ve been given this responsibility, and if I don’t do my job and take care of it, then that gift will wither and die.’’

Geoff Edgers can be reached at gedgers@globe.com.