ACT III, SCENE 2:
Tatyana
Tatyana sits down to write a letter, pauses, and reads it back to herself.
Я к Bам пишу, — чего же боле?
I write to you, —and then?
Что я могу еще сказать?
What more is there to say?
Теперь, я знаю, в Bашей воле
Now, I know, it is within your power
Меня презреньем наказать!
to punish me with disdain!
Но Bы, к моей несчастной доле
But if you nourish one grain of pity
Хоть каплю жалости храня,
for my unhappy lot
Вы не оставите меня.
you will not abandon me.
Сначала я молчать хотела;
At first I wished to remain silent;
Поверьте, моего стыда
then, believe me,
Вы не узнали б никогда,
you would never have known my shame,
Никогда!
never!
—PETER ILYICH TCHAIKOVSKY, EUGENE ONEGIN
November 7, 2010
Dear Charity,
This morning, I saw you on the television when I woke up. I know it was taped some time ago, but for me to wake up, turn on the TV and hear you sing and speak about what it was like after your lung transplant, and especially your singing “Smile when your heart is breaking . . .” by Charlie Chaplin was the best medicine for me!! Absolutely the best medicine!
I doubt you know that I have advanced non-curable, lung cancer that cannot be removed nor able to undergo lung transplantation. I never smoked, ate healthy my entire life, exercised—like your own history—something really bad happened and why? I don’t know. But I responded to treatment for about a year and now no longer respond . . . I am starting experimental treatment which seems very bizarre as you know I spent more than 30 years of my career developing experimental medicine for pulmonary hypertension. I have to keep telling myself to believe in what I always told you and so many more of my patients, we will keep you stable until we have better treatments.
Enough rambling—and I haven’t opened up to anyone like this since my diagnosis over a year and a half ago, but somehow hearing your voice this morning has had the most inspirational effect on me since being diagnosed.
My request may seem silly, but I would so appreciate a CD of your singing “Smile when your heart is breaking . . .” as I keep singing it over and over in my head today. And I believe that if you can do that, I need to as well!
With very warm regards,
Dr. Robyn Barst
Shame begins to course through me. The news clip came from an interview I did with CNN after my TED talk. In a few months, TED will push out a video of my talk. While I don’t mention Dr. Barst by name, my speech’s thesis is an indictment of her patient philosophy and bedside manner—even though this woman devoted her life to finding a cure for the disease that nearly took my life. I feel sick with guilt.
A few weeks later, Election Day has come and gone and Yoni’s candidate won. They’re still closing up shop, but Yoni has a bit more free time. Together, we drive out to Westchester, New York, to visit Dr. Barst. As we battle rush-hour traffic and icy roads, I warn him about her personality.
“She’s extremely intense.”
Yoni laughs. “I’m planning to marry you, Charity. I think I’ll be OK.”
“She makes me look mild!” I insist. “She’s like a more intense Mom. But all of the time.”
“Yeah,” says Yoni dismissively, “I think I can handle it.”
“You just don’t understand,” I say, shaking my head. “This woman haunted my treatment for half a decade. She’d call Didi to rile him up and try to insist I shouldn’t sing.”
“Charity,” advises Yoni. “She’s sick. If you’re going to have a bad attitude, we should probably turn around now.”
“No!” I protest. “I want to go! Honestly, I just feel really terrible about my TED talk.” I pause for a few moments. “. . . Thinking about it, I don’t know that I would have been so insistent about singing if it hadn’t been for her.”
“What do you mean?” prods Yoni.
“Well . . .” I stop to gather my thoughts. “I suppose nothing is as encouraging as a worthy adversary.”
I grew up in a family that values healthy disagreement. Dr. Barst was a remarkable person, responsible for putting my disease on the map. When I was diagnosed with PH, I wasn’t in control of anything. In a way, it was empowering for me to disagree with this luminary. Even more so because I ended up being right. If I could prove one of the best doctors in the world wrong about my singing, maybe—just maybe—all of those other doctors were wrong about my disease. Maybe everything would be OK. Maybe I’d recover.
Just then, we pull into a long driveway. Together, we walk to the door. I hold Yoni’s hand tightly, bracing myself for the acerbic doctor I met so many years before. Then the door opens to reveal a tiny woman wearing an enormous smile.
“Hello!” she says, bursting with warmth and wrapping her thin arms tightly around me. She holds the embrace a few moments longer than I anticipate. When she lets go, she’s still beaming.
“And this must be Yoni!” She takes hold of him next as a handsome white-haired man steps out beside her.
“This is the other doctor in our house,” she gestures, introducing her husband. Together, they show us around their home; family photos, and the inlaid piano that belonged to her grandmother. Then we make our way to their farm-style kitchen where a platter of charcuterie awaits. Over the next hours, we swap stories about the people we love and our dreams for the future. Dr. Barst wants to see her first grandchild born and her daughter’s wedding. I want to sing at Lincoln Center. We both want to see pulmonary hypertension cured and rejection-proof, 3D-printed lungs.
“The first time I ever saw PH was in the early eighties. The patient was so sick, so young, and no one could figure out what was wrong with her. Everyone had given up, but I stayed beside her all night. She died in my arms after three days. The next time I saw the disease, I was able to diagnose it. I explained that the patient needed to be careful, but we’d treated some of the symptoms and he was feeling better. The night after he was released from care, he went out dancing with friends and dropped dead. When I got that call . . .” Tears begin to well in her eyes. “These patients—they just wanted to live their lives, but I was so scared for them. They didn’t have to do anything wrong. Just being normal was enough to kill them. I decided I never wanted to see another young person die because of this disease. There were no treatments approved for PH at that time, but I dedicated my life to changing that. Today, there are ten approved and another twenty in the pipeline. Patients have choices now. But being so close—sometimes I couldn’t see what it was like to live with a disease like this; with a sickness I know is going to . . .” she trails off.
Before we leave, I sing “Smile” for her, my voice vibrating the crystals on the living room chandelier. Back in the car, Yoni turns to me—
“Chary, you were just off,” he says, shaking his head and smiling. “I know this woman. She’s an overly protective Jewish mother. She cares so much about the people around her that she doesn’t care what they want. That’s what she is to all of her patients—and to you. That’s why she’s such a great doctor.”
Yoni’s right. She accomplished as much as or more than anyone in her field of study because she cared. Almost too much. Caring doesn’t make you omniscient and, sometimes, worry can blind you to reality. But in most cases Dr. Barst’s concern brought about major progress for the patients for whom she so cared. Maybe, on an individual level, her drive could be oppressive. But on a systemic level, that intensity was transformative.
As I ponder, we cross the bridge into Manhattan, headed back toward Yoni
’s own overly protective Jewish mother.
Thanksgiving again. This year, I’m out of the hospital and we certainly have a lot to be grateful for. It’s a feast of epic proportions: salmon, turkey, tofurkey, multiple stuffings, fresh bread, and sides galore, over a dozen pies and cupcakes on top of that. One would expect the games and guests and merriment from a family deprived of celebration for decades. It’s a wonderful evening. But over the past month, I’ve been getting nausea-inducing migraines. Midway through dinner, I have to excuse myself because of the pain. Before the night is through, I’ve lost the contents of my stomach twice.
Shortly after Thanksgiving, I catch cold. My sputum samples and blood tests come back normal and I want to stop worrying, but I can’t. While my breathing measurements haven’t taken the dramatic drops I’ve been warned about, they are trending lower. I call to explain my concerns to Travis, the nurse assigned to my post-transplant care.
“Well,” he says, “sometimes you just have to wait these things out. Just remember the general rules: if you’re coughing less than a tablespoon of blood or measuring less than a ten percent spirometry drop in a week, you’re probably all right.”
I know the guidelines, but still, something feels off. Waiting out an infection without medication seems to go against everything my nurses taught me. If I allow my immune system to deal with the bug in my upper respiratory tract, it’s likely to attack my new lungs too. And that can lead to rejection.
I follow up with Travis a few times, but soon I just feel like a pest. It takes another two weeks before I feel like myself.
“Well, Chary,” says Mom after the cold is finally resolved, “you should be grateful your body can get rid of a disease on its own. I never would have anticipated that after the transplant.”
But during the quiet of night, I hear the faintest wheeze. An almost imperceptible rattling. It’s just my imagination, I assure myself in the dark. But weeks later, my spirometry still hasn’t returned to where it used to be. I’m starting to get nervous.
I return to New York. I love the city and the experiences I have here, but I dread the spirometer’s downward march. Every four or five days, it drops again. Not enough to be considered statistically relevant, but it’s not normal. I email Travis again and hear nothing back. It’s all psychosomatic, I think, privately chiding myself for hypochondria. But each day, as I walk the blocks to my music lessons, my breathing gets heavier.
Fear is the side effect they never mention in transplant literature. The constant anxiety that the next thing to go wrong has already happened—that there’s already a disaster under way inside you, just no way to measure it yet. My doctors have promised I’ll get used to it—that I’ll learn when I need to worry and when I can relax. So why do I feel so ill at ease?
The night before I go home for Christmas, my friend Katie and I carry a Christmas tree from the Upper East Side back to her apartment in Midtown. Decorations twinkle on brownstones as snow drifts down from a rose-colored sky. After cramming inside the elevator, we place the tree into a holder. We trim the Tannenbaum while listening to carols, then sip hot cocoa together in front of the twinkling lights. But I’m nearly too exhausted to appreciate the yuletide wonder of it all.
That night, I blow into my spirometer. Wheezes and moans squeeze out from my lungs. I start to cough. Spitting phlegm into my sink, I see blood—like a pin dipped in red ink dragged through the viscous mess. It’s less than a drop, let alone a tablespoon. Sometimes, you have to wait it out, I repeat Travis’s words in my head, trying to reassure myself. But in my gut, I know there’s a problem.
Yoni picks me up the next morning and we begin our drive to Denver. (Flying home on a plane jammed full of strangers during flu season just isn’t going to happen right now.) As a child, riding in the back of our family’s repurposed Blue Bird school bus, I had always loved Kansas. Turns out I still do. The plains surrounding the highway are stunningly beautiful; even when the landscape is a mess of dirt and snow, the flatness surrounding us reflects light with an almost opalescent pink-yellow glow. Soon, we’ve crossed the border of Kanorado—an aptly named town that straddles the state line—and immediately the landscape changes. Past Colorado’s threshold, we begin the climb to a mile high.
Within an hour and a half, we’re exiting off I-70 and turning right on 46th Avenue. We park in front of Theopolis. Cloaked in snow, wreaths twinkle in every window. As Mom’s herd of white dogs bounds out to meet us, the house looks straight out of a Currier & Ives picture print.
I’m so grateful to be home. But almost immediately I feel myself running out of breath as I climb the stairs to my room. I decide to call Dr. Budev.
“Charity, are you all right?” she asks, her voice tinged with concern.
“I don’t know,” I admit.
“Why didn’t you call me when you got sick? I would have made an appointment that week!”
I try to explain—“I called my coordinator . . .”
“I don’t care about the coordinator, Charity. This is your life we’re talking about. If you’re worried, you call me.” She sighs before continuing: “You sound scared. Your appointment is in a week. Do you want to come in before then? Because I can bring you in to see me tomorrow.”
“No. A week is all right.”
“Well, just remember. Call me,” she makes me promise before I hang up.
Young, ambitious, and pretty, Marie Budev is equal parts doctor and kindred spirit. A sharp dresser with a soft bedside manner, when she metes out medical advice, it feels more like input from a valued friend than preaching from a medical professional. Maybe because she really acts like a friend. She’ll put off personal plans, vacations, or holiday arrangements to make sure her patients are cared for. That said, she has scores of patients and I’m wary of taking advantage of her dedication. Still, wheezing here in Denver, I’m grateful she knows what’s going on.
Christmas in Denver can’t help but be magical. It’s been six years since I’ve been home for the holidays. We have our annual Night Before the Night Before Christmas Party. I spend most of it tucked away from the crowd in the study, but it’s the first time in years I’ve seen a bevy of my old friends. My oldest siblings have stayed in DC with their own families, but there are still enough brothers and sisters around to make it really feel like Christmas. Not to mention the snow, crafts, carols, and food. But underscoring the festive hum of the season is the distinct dissonance of my subtle health decline. It’s just the altitude, I tell myself as my spirometry ticks down yet another point. It’s still slow, but ever more noticeable.
Like a dog before an earthquake, Mom’s always had an extremely keen sense for impending family disaster. As Christmas Day nears, she’s becoming increasingly tense. And, while Mom doesn’t always know what exactly is making her nervous, she can almost always pinpoint whom her unease concerns. This time, she’s decided the source of her worry is my imminent engagement to Yoni, and she whispers entreaties to me to really carefully consider my choice of partner. I’m too preoccupied by my numbers to even care about her attempted meddling.
Christmas Eve, I stay up with Mom and my sisters to prepare for Santa Claus’s visit. It doesn’t matter that we’re all too old for the full Santa Claus experience. It’s tradition. We wrap gifts, stuff stockings, write love notes from elves, sing songs, and eat the milk and cookies we’d set out for ourselves a few hours earlier. Finishing as the sky begins to lighten, Liberty, Mercina, Glorianna, and, finally, Mom all go to bed. I sit alone on the couch, gazing at the tree. Sprinkled with lights and ornaments my family has collected over three and a half decades, I’m overwhelmed by a flood of memories: getting tucked in by Dad; being so excited I couldn’t sleep; waking my parents at the crack of dawn; the avalanche of gifts and stockings filled with the stuff of dreams; dropping off sacks of gifts for families in need. This is what home feels like. Over the years, I’ve missed this place so much. At times, I’ve been willing to sacrifice everything just to come back. Being here is
my own personal Christmas Miracle. I have a nagging feeling it won’t be repeated next year, though.
Our giant Great Pyrenees, Nori, shoves his head into my lap. I give him a good scratch. Whatever happens next, I’m glad to be here now.
On Boxing Day, Yoni and I need to get back on the road. I have a much-needed appointment in Cleveland, closely followed by lessons in New York and a performance in San Diego. There’s a lot of ground to cover and not much wiggle room in my schedule. But goodbyes are never easy, and Mom has grown particularly weary of them. As Yoni and I prepare to leave, she has a full-blown meltdown.
“You can’t do this!” cries Mom hysterically in the driveway as we pack bags into the car.
“Annette,” says Yoni, “Charity needs to go to Cleveland. Driving is safer than flying. We have to go.”
“You’re going to kill her!” she wails, already certain there’s something wrong.
“Mom,” I protest vehemently, “this isn’t fair. You know I have to go to the doctor.” Mom knows my spirometry has been falling since November. But she’s decided Yoni is the problem—not the fact that I’ve had an untreated infection for nearly two months. As we drive off, she’s still fuming in our rearview mirror.
We arrive in Cleveland late the next day, a storm nipping at our tail. A familiar routine greets us. First, my blood is drawn by my usual phlebotomist, Anita. She takes sixteen vials. Next, an X-ray, and then spirometry with Gerry the singing respiratory therapist. Placing my lips over a white plastic tube, I wait for his command: Inhale. Exhale. We repeat the exercise twice. Three times. Five times. Eight times. Finally, after twelve tries, I’m dismissed with my spirometry analysis. The numbers themselves are consistent with what I’ve been seeing at home, but, looking at the different points plotted out on a graph, it’s worse than I’d expected. During the month following my hospital discharge, the line has a steady upward trajectory. Beginning in November, it takes a sharp turn downward.
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