After the party, I pack my dress into a garment bag and Mom and I head back to the apartment. In the car, we talk about home. About Dad and the other kids. I don’t mention the staircase—how difficult it is to walk up a hill or how much I struggle to breathe. If I mention that to Mom, she might make a fuss. She might not let me ignore it any longer.
The next day, we go to my voice lesson. Éva seems as thrilled by last night’s performance as I am.
“There is no doubt,” she declares, looking grimly at the floor and then at me. “You are a big talent.” I blush. “But you should be a Great.”
Éva continues, “To be a Great, you need three things”—Mom whips out an old envelope from her bag and starts taking notes—“you must get very sick, you must fall in love, and you must work, work, work. Then, in ten years, you will really be something. People will want to give you many roles, but don’t be fooled: They will ruin your voice before it is ready. All they care about is money, money, money. You are more than roles. You are going to be a Great Artist. Remember this.”
Mom is still scribbling furiously, but it’s hard for me to take Éva seriously. It’s ridiculous to expect that, out of all the people wanting to make it big in opera, I could be the one to do it. Yet at the same time, I desperately hope she’s right. Despite all of the misgivings I’ve had over these past months, I want to be Great more than almost anything else. Anyway, ten years is a very long time from now. I file Éva’s advice away in the back of my mind, hoping to need it later.
The next week, I’m on a plane back home to Denver with Mom. Encouraged by both Mom and Éva, I’ve decided to take some time off from performing in Europe to go home and prepare to serve a full-time mission for my church.
It was missionaries who first inspired my love of singing. Before Hansel and Gretel, these young women were my exemplars—musical and otherwise. Their kindness, their service, their dedication, and their songs struck enduring awe into my devout little heart. I’ve always been certain that going on a mission is the best way to establish God as my priority; in my mind, whatever successes I do or don’t have cannot happen because I’ve neglected my duty to Him.
Before sending in my final application for missionary service, I have to undergo a mandatory full physical. My doctor is fresh out of residency and pretty in a no-nonsense way. We chat for a few minutes and I tell her about myself: my passion for opera, my plans to serve a mission, my fainting spells, and my fatigue. She looks in my ears, throat, and eyes. She tests my reflexes and listens to my heart for a few moments longer than usual. Then she orders an EKG. The nurse places cold, studded stickers on my side, chest, ankles, and abdomen and I watch as a needle traces a jagged line onto the sheet feeding out underneath it. When the test is done, the nurse takes the sheet and leaves the door cracked behind her. I hear the doctor discussing me over the phone down the hall. Finally, she returns with my results. Sitting down, she first suggests that I not research anything she’s about to discuss with me on my own. After this disclaimer, she tells me that she believes I have idiopathic pulmonary hypertension, or PH. The doctor doesn’t want to give me too many details until she can confirm her diagnosis with Dr. Chris Lang, one of the region’s top cardiologists. For the time being, she just tells me that she won’t be able to sign my health release forms.
As soon as I get home, I sit down at our family desktop and Google “pulmonary hypertension.” I click on the first result. Pulmonary hypertension is caused by a thickening of blood vessels in the lungs, which impedes oxygen absorption and increases blood pressure within the heart, making physical activity difficult. In its most advanced stages, fainting can occur with exertion. While PH is relatively common as a secondary condition of everything from pregnancy to AIDS, I’ve been tentatively diagnosed with the idiopathic variety of the disease, for which there’s no known cause or cure. Pregnancy with PH is fatal and, without a lung transplant, nearly 70 percent of all PH patients die of heart failure within five years of diagnosis. There are fewer than seven thousand cases of the disease worldwide. So I guess I really am one in a million, I think wryly to myself.
I stare at the screen, feeling sick in more ways than one. This can’t be right. I click on another search result, this one belonging to a major university hospital. It confirms all the statistics. I do the math. I’m twenty years old. Somewhere between twenty-two and twenty-five, I’ll probably die. I haven’t been in love yet—I’ve never even kissed a boy. A mission is probably off the table. Children, out of the question. I don’t have ten years to become a great artist. I hurt so much that I start to laugh. Soon, tears well up and I’m left with only silent, lonely sobs.
Inhale. Exhale. Grabbing the home phone, I retreat to the basement bathroom. What do I do? The shortness of breath, the fainting, the heart palpitations; this diagnosis answers so many questions I’ve had for years. In a strange way, it’s a relief. It’s not all in my imagination. I’m not crazy. Something is really, really wrong. My reflexive expectation of calamity, inherited from my Jewish grandparents, has been borne out to great effect.
I decide to call Dad. He always knows how to deal with a situation. He won’t panic, but he’ll take this seriously. Fifteen minutes after I hang up the phone, he’s left work and arrived in our driveway.
After sending the three littlest siblings downstairs to watch TV, Dad calls a family meeting. Ignoring my entreaties to hold off until we have a firmer diagnosis, he announces my condition to the family—resolute that we’re going to face this trial together. But I know this is my cross to bear. Not my brothers’ or sisters’. I don’t cry in front of them. I won’t. I’ve already given everyone enough to worry about. “It could be worse!” I quip. “I still have my looks!” But the stunned, numb silence persists. I try one more time—“At least PH isn’t contagious?” Nobody laughs.
Hours later, in the dead of night, Mom crawls into my bed. She holds me in the darkness and we weep together. Even without an official diagnosis, we both know that this is the beginning of a goodbye that could last a few months or a few years. Regardless of the pace of change, this disease will shape our family’s future and, ultimately, end my life.
ACT I, SCENE 2:
Antonia
A mysterious lung disease turns life-threatening when Antonia sings. Antonia’s father, Crespel, and her lover, Hoffmann, try to help her find happiness while a malevolent Doctor Miracle is intent on expediting Antonia’s demise.
Viens lá, comme autrefois.
Come here as before;
Ecoute, et tu verras si j’ai perdu ma voix.
Listen, and you’ll see if I’ve lost my voice.
Tiens, ce doux chant d’amour que nous chantions ensemble.
Here, the soft song of love we sang together.
C’est une chanson d’amour.
’Tis a song of love
Qui s’envole,
That flies off,
Triste ou folle,
Sad or joyful,
Tour á tour;
Turn by turn;
C’est une chanson d’amour
’Tis a song of love
La rose nouvelle
The new rose
Sourit au printemps.
Smiles on the Spring.
Las! combien de temps
Ah! how will it be
Vivra-t-elle?
That it lives?
—JACQUES OFFENBACH, LES CONTES D’HOFFMANN
I love meeting new people, but there’s nothing fun about the onslaught of strange medical personnel who parade through my life during the next weeks. At each appointment I’m poked, prodded, and cross-examined. My weight is read off scale after scale and vial after vial of blood is extracted from my already bruised forearms. Mom is beside me through it all, but not even her titanium will can make the needles hurt less.
“Are you or have you ever been sexually active?”
Every doctor asks the same question. Every doctor gives me the same incredulous look when I answer, “No.”
Like a recurring nightmare, I sit red-faced and miserable between the doctor and my parents as the former questions my sexual history (or rather, complete lack of it) and the latter adamantly affirms my unblemished virginhood. One day, a doctor storms out of the room demanding that Mom and Dad leave too. Alone in a doctor’s office for the first time since my initial diagnosis, I listen to their muted shouting through the thick taupe door. Eventually, a research nurse enters to conduct a second, private interview. Once I’ve independently confirmed my virginity, she retrieves the others, still fuming, from the hall, and we proceed with my appointment. The entire process, repeated in doctors’ offices across the country, is expensive, invasive, embarrassing.
My grandfather decides to send Mom and me to New York to see Dr. Robyn Barst, a leading expert on pulmonary hypertension. Didi heard about her from her father-in-law, whom he happened to be seated beside at an event just a few weeks before my diagnosis. While he doesn’t believe in God or miracles, Didi knows beschert (Yiddish for “destiny”) when he sees it. He organizes an appointment for me immediately.
Mom and I wait in yet another dismal office as fluorescent lights flicker nervously above us. My arms look almost gray against the yellow poplin of my blouse and my full white skirt. Dr. Barst rushes in like a vortex, her glasses perched precariously near the tip of her nose as she strides toward us, shuffling through a pile of papers. Her haircut, her figure, her gait—everything about her is powerful. After a curt introduction, she leans toward me. “I hear you’re an opera singer,” she clips out. “You’ll definitely have to stop that immediately.” My eyes widen as she continues—“I don’t think you understand the severity of your disease. Those high notes are going to kill you.”
She must not understand. Other doctors have told me to ease up on physical activity, to change my diet. I’m taking a battery of medications that thin my blood and give me rashes and make everything taste like tin foil. I’ve even been advised to stay away from Denver—my home—because of its high altitude. I can’t be with my family. I can’t go on my mission. I’m going to die young and childless. But if I can sing, I can face all that with a smile. According to Dr. Barst, my life must now become a series of carefully filled prescriptions. But to me, life will always be an opera. This mysterious illness is just a run-of-the-mill dramatic plot twist.
Sitting in the cold light, I feel like Antonia in Les Contes d’Hoffmann, my own Dr. Miracle glaring down at me. Ask me to change my diet, my school, my city, my sleep patterns, my exercise, my schedule. I’ll do it. But I will never stop singing. Ever since Lincoln died, I’ve known that death is a part of life. But singing is my life. I don’t know why—if it’s the melodies or the stage or the physical sensations. To be honest, I don’t care. I just want to live—really live—for however long I have left. I may never become Great, but I will be heard.
Our meeting ends and Mom takes my hand as we walk out of the hospital. The solstice sun glows over West 165th’s blond brick exteriors as a man sells cups of fresh fruit on the corner. Mom buys one and hands it to me. I hail a yellow cab and direct the driver to Grand Central. We travel in silence. Mom and I are big talkers, but nothing needs to be said right now. She already knows everything I want to tell her. Without a word, we both already know I will never enter that doctor’s office again. As we share sweet pieces of mango in the back of the taxi, I notice my arms have lost their gray tinge. It’s nice to be alive.
On top of the personal exhaustion and discomfort these appointments inflict, I fear they may also be driving my family to financial ruin. Dr. Barst didn’t accept my insurance, and our meeting with her cost thousands of dollars out of pocket. The medications that manage my PH are extremely expensive, and we’ve been crisscrossing the country via airplane to meet different specialists. Mom wants to take me to see yet another doctor, this time in Baltimore, but I can’t help but feel the cost of all these appointments is beginning to outweigh their benefit.
Through her relentless conversations about my PH with anyone who will listen, Mom has heard that Dr. Reda Girgis is a well-respected pulmonologist at Johns Hopkins. I’m sure he’ll tell me the same things I’ve already heard from so many doctors before him: I’m very sick and I have very few, very painful options for staying alive. I call his office on the sly to cancel our appointment and his assistant asks why I won’t be coming in. I disclose it’s for financial reasons. After a brief hold, she explains Dr. Girgis will see me free of charge.
Maybe this is a different kind of doctor.
Tomicah lives and works in Washington, DC. Mom suggests we all drive to Baltimore together. It will be fun! The oldest of us kids, Tomicah has been “grown up” since before I can even remember. Married, finishing his PhD, and working on the Senate Foreign Relations Committee, he’s a busy guy. But he makes time for this. He drops Mom and me at the hospital and we go up to the office.
There’s a weight about Dr. Girgis’s presence. He’s a serious man and a serious doctor. While his English sounds native, Dr. Girgis grew up in Cairo until his parents moved to Detroit. Now, he’s cochair of his department at Johns Hopkins University Hospital, where he teaches and practices medicine. Eminently dry and thoughtful, he isn’t an obvious match for my bubbly personality.
“Are you or do you expect to become pregnant?” he asks.
I am Diva Suprema, Goddess of Virtue, Master of My Universe. I can do anything. I can do this. “I am not sexually active,” I wince out, anticipating the ensuing circus.
He looks in my eyes for an extra moment. It doesn’t feel invasive. Just kind—like he wants to make sure I’m OK. In an instant, I feel like there’s an understanding between us. Almost as soon as he pauses, he continues, “OK. Before you get married or if you decide to get serious with a boyfriend, make sure you speak with me or my nurse, Tracy.” With that, he moves on to the next question.
This is a different kind of doctor.
With our appointment drawing to a close, Dr. Girgis says I can sing. He even thinks the breathing exercises I do for vocal training could be good for my lungs. To him, Denver’s altitude is the real concern. He encourages me to move to sea level for good.
This is the doctor for me.
On our way back to Washington, Mom insists we stop at the Peabody Institute of Music, the oldest conservatory in North America. This is the conservatory I was planning to attend before I diverted to Budapest. We’re all exhausted and Tomicah objects to the detour, but twenty-five years have inured Mom to his protestations. Begrudgingly, we walk into Peabody’s grand foyer where Mom immediately requests to see the dean. Tomicah groans, but I don’t mind. It’s the middle of the summer—the dean is gone anyway. Why stop her from asking?
“You’re in luck,” the security guard chirps. “Dean Justen happened to drop by school today!”
Mom glances back triumphantly as we follow her and the guard at a distance. Winding through the glittering foyer into a labyrinth of hallways, empty practice rooms, and elevators, we finally arrive in the anteroom of the dean’s office. Late afternoon sun streaks through old blinds, illuminating a few leaves of an aloe plant, a sliver of a diploma, and a brass statue in the dark, rich room. Dean Justen greets us from underneath a crown of unruly white hair.
He is my mother’s jolly Austrian counterpart. The two of them gab back and forth like old friends. He’s well acquainted with Éva and the Liszt Academy and, after realizing I’ve already been accepted to Peabody, his face brightens. “Come back!” he beckons. “We wanted you once. After Liszt, I am certain we will only want you more!” And so, yet again, I find myself a student at one of the world’s great music schools. Tomicah and I glance darkly at each other, knowing Mom will use this happy series of coincidences to justify countless impromptu field trips in the coming years, but I find myself smiling as we head back to the car. Against all of my direst expectations, this trip to Baltimore has been fun—just like Mom promised.
Peabody is a welcome opportunity to reintroduce a measure of structure
to my crazier-than-usual life, but, like Hungary before it, Baltimore poses some logistical challenges. A forty-five-minute drive from Washington, DC, under optimal conditions, Didi, Mimo, and Tomicah won’t exactly be on hand in case of a medical crisis. My parents remedy this perilous independence by demanding that my sister Liberty move across the country to live with me. They insist it will be a wonderful learning experience for her and a vital safeguard for me—disregarding the obvious facts that, as a teenage girl, Liberty is totally unfit to care for me, and, only four years older with a terminal illness, I am totally unfit to care for her. But on a sunny morning in July, I find myself retrieving her and her two small suitcases from BWI Airport.
First conservatory, then my illness have occupied most of my attention of late, and I haven’t spent quality time with Liberty in a while. Over the past year, she’s outgrown our family’s “weird religious homeschooler” vibe much more effectively than I ever did. She listens to music by Cat Power and The Decemberists instead of Gounod and Bellini. Where her shelves house contemporary fiction, mine burst with pills and prescriptions from diuretics to Viagra (which, fun fact, was initially developed to treat PH). Liberty is sixteen going on thirty. I’m twenty going on ninety.
The Encore Page 4