The Encore

by Charity Tillemann-Dick

  But the blood gas just keeps going up.

  The next day, Yoni and most of my brothers are at the hospital. When the surgeon comes in, everyone hopes for good news. A number of other patients on the floor have already received transplants—patients with the same blood type as mine. They’re all hoping the doctor carries the news we’ve been hoping for.

  “Annette,” he says, “can I speak with you privately?” They walk into the bay next to mine—Dr. Budev, Yoni, and my brothers standing a few feet away. “You should understand that your daughter’s time has come, Annette. Letting her go peacefully is a service—to Charity and the family. This is a brutal intervention. It probably won’t work and it is a terrible way to die. People who try to keep their loved ones alive past their time aren’t doing them a service. They’re just being selfish. You are not a selfish woman, Annette, and you should seriously consider gathering the family together and saying goodbye,” he repeats, this time more emphatically.

  Mom had come back from the hotel early the night before, making it three nights since she’s rested through the night. It takes her sleep-deprived mind a moment to distill the doctor’s words into meaning.

  Slowly, she steps toward him and begins. “Doctor, I know death. I’ve seen my son die, and when it was his time, I let my husband go. If I thought it was my daughter’s time to go, I would let her go in peace. But, Doctor”—she says, with an intensity that grows with each word—“I am going to make you fight to keep her alive. I will make you break every last rib in her body to get that final breath out of her. Because it is not her time yet, and I will not let her go in peace.”

  Bristling at the directive, he replies, “Then she’s going on ECMO. It doesn’t happen bedside. I’m taking her into the OR for surgery if her blood gas doesn’t drop to eighty by the next time we check.” He stalks off, upset by the experience.

  Mom sits down in silence, her three sons and Yoni looking on in a sort of terror-filled awe. Ten minutes later, the surgeon comes back.

  “Eighty-five,” he says. “If her blood gas doesn’t drop to eighty-five, I’m putting her on ECMO. Immediately.” He orders medication through the IV to paralyze my body in hopes my breathing will synch with the respirator and leaves the room. Everyone is silent. My blood gas has been over a hundred for days.

  Kafka couldn’t imagine a more nightmarish scene. There’s nothing for Mom to do but sit at my bedside and pray. She doesn’t even fully understand exactly what the doctor’s order entails, but she knows she doesn’t want someone who believes her daughter’s case is hopeless performing a dangerous surgery.

  Matt, the respiratory therapist, carefully adjusts my airflow, goading it to match the rhythm of my body. My nurse, Davida, comes over to help him. Over the next hours, they work with Mom and Yoni with all the precision of a professional athletic team. Slowly, the blood gas numbers begin to fall. But the surgeon will be back any minute. He’s been gone for hours. Mom bows her head to pray.

  In the middle of her silent pleading, someone walks into the room. It’s the surgeon. A lump forms in her throat. Why couldn’t he have given them another hour? They’re so close. Drawing another blood sample, he sends it down to the lab. It seems to take hours for it to return. When it finally does, my blood gas is down to eighty-four.

  Over the next days, my blood gas numbers continue to fall until they settle in the low seventies. They’re still about three times what they should be, but it’s an enormous improvement.

  Late one afternoon, Dr. McCurry comes to visit.

  “Annette,” he says, “we’ve gotta get her on ECMO.”

  “Really?” asks Mom, surprised at his directness.

  “Yes,” he reiterates. “It’s the only way we can keep her alive until we get lungs.”

  “When do you think we should do it?” asks Mom.

  “Right away,” he says without hesitation.

  “Really?” she asks again, expecting some sort of ultimatum like she’d received before.

  “Yes,” he says with no equivocation.

  “Will you do it?” It’s her final question.

  “Certainly. I’ll use an Avalon on her. I’ll do it tomorrow. But then you’ll have to get her out of bed. She has to be stronger for the transplant.”

  Mom calls Yoni to discuss the ECMO with him as soon as Dr. McCurry leaves the room. Both of them agree to defer judgment to the all-star surgeon.

  First thing the next morning, Mom walks me into the elevator and I go in to have a hose-sized catheter inserted into my chest. When I get back, Dr. McCurry prescribes exercise. “Wake her up—get her walking again. She needs to be strong if she’s going to have this transplant.”

  Not long after, I wake up.

  Soon, I notice my little sisters, Mercina and Glorianna, by my bedside. But they’re supposed to be in school. They should be focusing on their schoolwork. Maybe they’re visiting for a holiday? Mercina has always had a knack for lip reading. I click my tongue in her direction and she sits down next to my bed.

  “I love you! But why aren’t you guys in school,” I ask, sincerely concerned about their academic futures.

  “Because we want to be here!” She pauses for a moment. “Don’t worry—we took the semester off, so it’s not like we’re neglecting anything important. Shiloh’s back from his mission in Japan and Zenny’s here too. We couldn’t let you and Mom go through this alone again.”

  Overwhelmed by emotion, I realize that, once again, my youngest sisters and brothers have become caretakers for my mother and me. They make sure Mom eats. They stagger eight-hour shifts with two of them constantly in the room so Mom is comfortable enough to go sleep in an actual bed. Yoni drives in late Thursday night and stays over the weekend. I have my own, extremely competent transplant team rooting for me, pushing me, and helping me however they can.

  Our schedule seems impervious to change. Every morning at 3:00 a.m., a man with long brown hair saunters in with a large machine. Turning on the light, he announces, “X-raaay.” Placing a cold, hard board behind my back, he puts a lead apron over my lap. After snapping two films, he leaves. At 5:00 a.m., the phlebotomist comes to take blood. At 6:00, the nurse gives me my medications and at 6:30, the new nurse arrives to go over notes with the night nurse. At 7:00 a.m., the doctors usually come in on rounds. From then on, every half hour, someone comes to check on me until midnight, when I have a few short hours to try to sleep before it all starts again.

  All I want to do is walk, but everyone except Mom seems opposed to the idea. After a few days, the combination of drugs and sleep deprivation is literally driving me crazy. The scenery begins to change.

  “What’s happening now,” asks Mom by my bedside, deeply amused.

  “I know it’s not real,” I mouth, “but you all look like giant house cats, standing on two legs. It’s quite disconcerting.”

  Another day, I think my nurse April, who has hair like Rapunzel, has taken me to her house and put my bed in a dark playroom, piled high with toys. With each new place I visit, my eyes grow wide with wondrous terror.

  My in-patient adventures don’t really matter until they start to affect my medical care. For days, I think I’m in the children’s ward of the hospital. In my mind, nurses place ugly bracelets on each of us. When I try to take mine off, a real fountain of blood erupts from my wrist. I’ve managed to rip out an arterial line. I look up to see Shiloh clasping my wrist, covered in blood, and looking as startled as I feel. Another day, I imagine a pudding cake has spilled all over me. I become totally preoccupied with the thick red Avalon catheter in my chest, imagining the blood is actually fruit filling that has messed up my pretend party gown.

  “Charity,” shouts Mom as my brothers hold me down. “Do you see those tubes?”

  As she says it, the imaginary cake filling coalesces into two red tubes. I nod my head yes.

  “Do you know what is in those tubes?” she continues.

  I shake my head no.

  “Charity, every drop of bloo
d in your body is going through those tubes. If you take them out, you will die. Quickly. You need to stop this right now. The doctors don’t want to transplant you as is. They won’t be able to if you’re dead. Do you understand me?”

  As she speaks, the cake, candy, pudding, and kitchen counter where I thought I’d been sitting disappear. I’m back in my hospital bed, my brothers pinning my arms to my sides. It’s surreal and uncomfortable.

  A doctor walks into the room. “What’s going on here?” he demands.

  “Oh, nothing,” assures my mother, cheerily. She’s concerned that my mental state, combined with my extremely precarious medical situation, will be enough to dissuade the doctor on call from transplantation. Dr. Budev has left town for a previous commitment and Mom feels like there are transplants happening all around me. People with the same blood type as me. People of a similar size. She wonders why I’m still waiting. She knows the doctors have to believe that, within the context of my extremely precarious medical condition, I’m as well as I can possibly be if I’m ever going to get lungs.

  When I’m not lost in hallucinations, I’m sadly aware of my situation. I’ve been on ECMO for weeks. Usually it’s a stretch to use it for a few days—a week or two, at most. But I’m fast approaching the month mark. Each hour brings an increasing sense of hopelessness.

  The despair dissipates slightly whenever the mail comes. Packages from my sisters and cousins, cards from friends, relatives, and acquaintances, notes from fans, and pictures from kids brighten my dismal room and warm my dampened spirits. On one of my more lucid days, Mercina brings over a package. With her help, I detach the card from the box. It’s from Sonia, the smiling woman from TEDMED. The card tells a Japanese legend of the thousand cranes. Whoever receives them would be granted one wish. I open the box to find it overflowing with string after string of colorful, folded birds folded by Sonia and her colleagues. We hang them all over the room.

  A few nights later, I go to bed after my midnight check-in. I see the blood going out of my body through the ECMO tubes. I’m physically and emotionally exhausted. My evening prayer is more of a conversation with God. I’ll feel tremendous guilt if I die, I explain. Everyone else here seems to be getting their transplants. My family has done so much to keep me alive, but as days turn into weeks and months, Dear Lord, I just don’t see how I am going to get out of this hospital alive. I am so weak and so ill, I just don’t see how it will be possible.

  I ask for nothing, I just want to talk. I don’t feel like I can share these feelings with my siblings or with Mom. They’ve been working so hard for my survival—I’d hate for them to feel guilty about it. I know God will hear me, but he won’t take my morbid realization as a surrender to death. God is the only one I can count on to really understand what I mean.

  Maybe my body can continue for another day or two or three, but I doubt I’ll make it out of this hospital alive. I fall asleep, hoping that, whatever my future holds, my family can finally have some peace.

  It’s dark outside when Mom shakes me awake.

  “Charity,” she urges, “Marie is on the phone. Charity, they have lungs for you! They have a match! They have a match!”

  I look back and forth at the people around me. “Is this a dream?” I mouth, curious if my imagination has, once again, taken over.

  “No,” Mom assures me, kissing my forehead. “This is very real. You have lungs! We finally have lungs!”

  It feels unreal. My grandma Nancy and Auntie Margot are in town. Yoni flies to Cleveland in time to see me into surgery. Kimber, Levi, Corban, and Liberty are en route from DC. I hang up with Dr. Budev as Dr. McCurry goes to prep for my surgery. So many people I love are here to celebrate. Silently, I press grateful tears from my eyes. Mom is crying too. I can tell her tears have fear in them along with joy. The first transplant was so hard, the path to recovery so long. Nightmares have been playing out in plain daylight for months now. How can we sustain this for another three months?

  As nurses roll my gurney toward the surgical theater, a voice deep within me confirms, everything will be fine. Flanked by Yoni and Mom, I squeeze their hands and pass the assurance along to them. “We’ve done this once. We’ll do it again. I love you.”

  Inhale. Exhale.

  I’ve always thought of my life as an opera. It’s only now, lying flat on my back on a metal slab, that I realize no opera could hope to capture the messy, grotesque, gorgeous truth of life. Still, as the anesthesiologist tells me to count backward from one hundred, I remember a rule common to both: breathe first. Everything else follows. Around me, the operating room slowly fades to black.

  THE ENCORE

  Taking a deep breath, I exhale into a small, clear plastic tube. The spirometer’s fan lets out the same whir it has every day for the past three and a half years. I repeat the process three times and wait for the digital screen to beam out the same numbers it always does. It’s been a wonderful three years. Yoni and his cousin have started a burgeoning educational technology company and he’s returned to his pre-groomzilla self—as thoughtful, optimistic, and incorrigible as he’s ever been. The album I recorded with Joela and her husband Richard reached #1 on Billboard’s classical charts. Yoni and I never took a real honeymoon—I was in the hospital for three months following our wedding—but in the spring of 2015 we went on our first vacation together, hiking in the Southern Andes. I’ve been performing all over the country and, in June, I began to write my memoir. The process has been more emotionally draining than I anticipated; for some reason, I hadn’t expected that reliving the most traumatic events of my life would be so challenging. But, hardships aside, I’m doing all the things I only dreamed of doing a few short years ago. Best of all, I’m alive. And my life right now is closer to normal than it’s ever been. For that, I am grateful.

  The digital screen finally flashes my numbers. They’re low. I’m not sick. I don’t have a cold or temperature. It must be a glitch. Again, I go through the exercise, blowing into the machine one, two, three times. Once again, the numbers are low. Placing my spirometer in its case, I finish packing for our trip. As Yoni takes the bags down to the car, I scribble an email to Dr. Budev. The good news: I’m already scheduled to see her on my way back from a wedding in Ohio.

  We drop by Mimo’s apartment to pick up Mom. There’s a six-hour drive ahead of us, but on the other side, we’ll find Hope.

  Two years ago, I received a Facebook message from Danielle, a nurse’s assistant and friend from my second transplant. Since I left the clinic, she’s become a missionary. Occasionally, she would write to tell me about developments in her ministry or give me more general updates about her life. She was living out one of my fondest dreams, and I was always eager to hear about her service.

  The evening she sent the note, Danielle’s prayer group had joined with a neighboring congregation. Early into the meeting, a young woman named Esperanza got up to speak—explaining that she’d received a letter from one of the people saved by her mother’s organ donation. She wanted to open it with friends. As she read the note, it became clear to Danielle that I was its author.

  Huddled around a glowing smartphone, Danielle facilitated Esperanza’s virtual introduction and mine. We’ve since become close friends. Our lives, like our names, complete a common narrative arc. Fluent in English and Spanish, Esperanza’s dream is to have a bilingual musical ministry. My voice is big and powerful; hers, exquisite in its soft soulfulness. We have different dreams, but we both want to do good with the voices we’ve been given.

  It’s a perfect day for a drive. The sun is shining, it’s not too hot or too cold. Appalachia’s ancient hills roll by in shades of emerald and gold. Armed with a bevy of podcasts, Yoni steers us toward our destination. Ira Glass’s monotonous lilt lulls me to sleep as the warm sun reflects off of my lap. I jolt awake. “Don’t fall asleep!” I shout unnecessarily, grabbing Yoni’s arm. He laughs as we pass underneath one of my very favorite highway signs: OHIO AND WEST.

  Passing
Cleveland, we make our way toward Canton, Ohio, stopping for church along the way. After services, we head to the campus where the wedding will take place. The hall at Monroe College has a standing-room-only crowd. It seems no one has been left out of the joyous celebration. Danielle—one of the bridesmaids—walks down the aisle before the bride. Slim and petite, Esperanza’s gently curled black hair drapes over her shoulders, leading to an A-line gown. She’s a picture-perfect bride, with the groom to match. My waterproof mascara never had a chance. But at least my panda eyes have company—the room is awash in tears. I’m not the only person here whose life has been, in one way or another, saved by this beautiful duo.

  White lights twinkle inside the barn where the reception is being held, and we get to know some of Esperanza’s mentors and friends. She knows it’s unlikely I’ll have my own children and has seated us with a couple who have adopted their children from Haiti. It’s a magical night and a perfect wedding. Not because of the fairy-tale venue or the gorgeous dress, but because of the loving-kindness that overflows from every aspect of the evening. We still have a long drive ahead of us. Once the cake is cut, we kiss the bride and groom and head toward the exit.

  As we walk down the road, the sounds of celebration fade, replaced by a symphony of crickets and the babbling of a stream. The wheat field ahead is cloaked in darkness but, every few moments, a gentle breeze awakens a milky way of fireflies. The bugs twinkle away in the cool black of the summer night, setting their own tiny world aglow for a few moments at a time. It’s been ten years since I studied with Éva. I’ve fallen in love, I’ve gotten very sick, and I’ve worked more than I ever knew was possible. But there are still opera companies that refuse me auditions, roles I haven’t sung, and experiences I lack that I’ve always assumed were prerequisites to artistic greatness. I no longer fear their absence, though. While I know Éva believed in my talent, I’ve come to realize that her promise was about so much more than scales, arpeggios, and lyrical singing.