Soprano remakes her life after career-changing diagnosis
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Nancy Zylstra was on the top of the world.
The Seattle soprano was at the start of what is usually a singer's best decade, the 40s. Phones were ringing on three continents: There were engagements with the Amsterdam Baroque Orchestra, the Toronto ensemble Tafelmusik, a "Messiah" production in Japan. Everyone wanted Zylstra's uniquely clear, radiant soprano and her deep understanding of early-music vocal technique.
Then her voice suddenly began to change, to diminish — to vanish.
Zylstra was puzzled, then frustrated, and finally terrified. What was wrong? Would she ever sing again?
She began a 10-year journey that Zylstra now describes as "like a long death," where every hopeful avenue reached a dead end. The journey took her to many doctors, medical centers, teachers and therapists — and to a startling diagnosis. She endured agonizing medical procedures and battled insurance claims adjusters who whined, "Well, you can still talk, can't you?" During this time, she lost her jobs, her teaching studio, both parents, her marriage, and, very nearly, she says, her mind.
Now, for the first time, Zylstra is stepping forward to tell her story. "Musicians are like athletes," she says, "and when Randy Johnson had back trouble, you heard about it — and how many games he was expected to miss. It doesn't mean you are bad at what you do; it means that something has happened to you and you have to face the consequences."
Her career is not evolving as fortunately as Johnson's; there may not be a vocal no-hitter in Zylstra's future. But she has made a satisfying life for herself. She deals with her demons every day, but she has decided to give as much of her talent as she can to a new generation of students — and to help other singers who find themselves in her unenviable circumstances.
Career-ending disabilities can happen to anyone, but singers — who are their own instruments — are especially vulnerable. Even singers at the top of their game, with the best medical attention, can't be totally secure: Julie Andrews, who underwent surgery for benign nodes on her vocal folds, still has not made a complete recovery.
The fateful Requiem
It was 10 years ago, in October 1994, when Zylstra was signed to sing the soaring solos in a Mozart Requiem. The arias took more effort than before, and Zylstra found herself working harder to get the right notes out. She was perplexed.
Preparing for another Mozart classic, the C Minor Mass, Zylstra sang for conductor James Savage, who was puzzled by the change in her sound.
The winter "Messiah" performances — music Zylstra knew intimately — went pretty well, and she thought the problems had passed. But they hadn't; they got worse.
The worried singer went to her doctor, who gave her a physical and checked out the vocal folds (or cords); they looked symmetrical and node-free. A speech pathologist's exam of the vocal apparatus found some inflammation but nothing serious.
A rest period of six weeks was prescribed: no singing, very little talking.
"Can I tell you how hard that was?" quips Zylstra, a chatty, high-energy, can-do dynamo and the mother of two girls.
"I had to constantly muzzle myself. Afterward, the voice still felt very logy and unresponsive; it felt thick."
She went back to her longtime teacher, the highly regarded Marianne Weltmann. She went to Charles Peterson, a teacher experienced in rehabbing the voice.
Nothing seemed to help. Zylstra had all her old range, including her stratospheric high notes, but her pitch — always one of her most reliable attributes — would unaccountably sag. Why wouldn't her voice do what she asked it to do? Zylstra says the experience was like the old Lily Tomlin comedy skits as Ernestine, the hilariously malevolent telephone operator who loved to plug callers into the wrong slot in the switchboard, just for fun.
"I'd want this," Zylstra says, "but I'd get that. And nobody could help me, not the specialist in Chicago or the people who knew my voice best. I was exhausted and frustrated."
Voiceless in Philadelphia
Finally, about five years ago, Zylstra went to Philadelphia, to the office of Dr. Robert Sataloff, a famous voice specialist. He found that something was alarmingly wrong with the vocal folds: One would stop vibrating, then the other, as Zylstra sang for him.
Sataloff ordered a laryngeal EMG (electromyogram), a terrifying procedure in which long needles are inserted through the cartilage in the neck (with an audible clunk each time the cartilage is pierced) and into the larynx. The result: a slight weakening in the superior laryngeal nerve on one side of the neck was discovered. This wouldn't be a big deal for most patients, but for a singer, it could be critical.
There were more tests, and finally a shocking diagnosis: Myasthenia gravis, the serum-negative variety that didn't show up on blood tests. An autoimmune disorder of neuromuscular transmission, myasthenia gravis afflicts an estimated 36,000 Americans, and its usual cause is an acquired immunological abnormality.
"The nerve sends the right chemical to the receptors on the muscle," explains Zylstra, "but the receptors' little ports are plugged up with your own antibodies."
The most common effects of myasthenia gravis are on upper-body muscles — eyes, larynx, cranial nerves, shoulder-girdle area. Once a strong swimmer, Zylstra can't lift her arms overhead for extended periods (she notes cheerfully that she is now unable to wash windows).
The disease can be controlled, to a degree, with medication that Zylstra takes up to five times a day. Too much of the drug, however, puts patients in myasthenic crisis (in other words, you stop breathing).
As frightening as the diagnosis was, at least Zylstra knew what was wrong. She concentrated on making the best of things — going to Philadelphia three or four times a year to work with Sataloff on rehabilitation and therapy. Fascinated by his research, she also got permission to follow him around (along with doctors from several other countries), even into the operating room.
Because Zylstra had trouble getting her vocal cords to close completely, Sataloff suggested autologous fat transplantation (injecting her own body fat into the vocal cords). (Vocal folds need to close just enough, but not too much, to work their best — ideally, they need to close to within a quarter millimeter of each other.) The results were tantalizing but short-lived, because the fat reabsorbs.
The "model compliant patient," as Zylstra puts it, she practiced singing twice a day for short periods and worked with a singing specialist. Her voice seemed to be coming back — but in a horrible, teasing way, where one phrase would sound perfectly beautiful, and the next phrase would be "from Mars." As she built more stamina, Zylstra discovered that her voice would be "great for four or five days, and then, ka-WHAM. Nothing."
From all these trials, Zylstra harvested a single piece of good news: Her voice now has enough stability to allow her to teach. She teaches up to five students a day, and she goes each summer to the highly regarded Oberlin Baroque Performance Institute and teaches there.
She is so highly regarded as "the Ornamaster," a nickname her students gave her because of her great skills in ornamenting baroque repertoire, that singers from other cities call her to sing a phrase over the phone and ask what she would do with its ornamentation.
"I'm an eternal optimist," Zylstra says, "and I take joy in giving my students what I have learned along the way."
The human cost
What is it like for a singer to lose her voice?
Zylstra now knows that "except for a miracle," she will not perform again, and the agony is clear in her face and her misty eyes as she talks about "feeling certain pitches right in my body, and they're so close, so close. I lived with hope for so long, postponing panic as I tried so hard.
"What is it like? It's like having a stroke. You lose functions that were once so easy, and you loved them so much, and now it is excruciating to try to get them back.
"I feel robbed. I have so many mature ideas about music and singing. At first I was more of an 'instrumental singer,' just creating a musical and beautiful sound, but now I am totally into the text and its meaning. If I could just have someone else's larynx!
"And I miss my singing colleagues — the excitement of rehearsal and collaboration. I loved making music so much that I never had stage fright."
The human cost of Zylstra's disappearing voice was exacerbated by intense stress at home. Her mother had a mastectomy, followed by chemotherapy, and couldn't drive; Zylstra was the caregiver. Zylstra's father lived with the family, and his health began to deteriorate. With the singer's own doctor appointments, there would be "weeks and weeks when I had to drive all of us to different doctors all the time."
Now, she devotes herself to her teaching. Zylstra also gives short talks to choirs about "Your Voice," with suggestions about warming up with "Vehicular Vocalises" in the car on the way to rehearsals or services.
"Every singer knows she will retire," reflects Zylstra. "But to be taken out when you have so much to offer is just so painful. I try to be graceful about it, but there are times — especially when I hear pieces I sang often — when I'm just overtaken by it all.
"My urge to be helpful, though, is stronger than my urge to despair. I want to give the right lead to my daughters: You don't give up, even when you have to make your life all over again."
Melinda Bargreen: mbargreen@seattletimes.com
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