The Encore

by Charity Tillemann-Dick

  During the time I spend alone, I think about Dad and my grandfather a lot. I miss them both and I wish Mom and Mimo had them here. In the same breath, I’m grateful that they don’t have to see me like this. It’s terrible to watch a child die. There is supposed to be an order to these things and when that order is interrupted, desperation causes us to act in unexpectedly heroic and horrible ways. Then again, I wonder if any of this would have happened had they been alive. I’ve often felt their untimely deaths were what interrupted the delicate medical equilibrium that my body had achieved. But mostly, I miss their voices and the calm reassurance of their presence and protection over me and my entire family.

  One warm afternoon in late winter, Mom is with me. She knows my time on earth is growing short; either I’ll receive a transplant soon or I won’t. Regardless, I need her. I can’t talk much, but it’s comforting to have her nearby. Sitting on the couch, I realize I need to use the bathroom. I make the mistake of trying to stand up. Even with ten liters of oxygen, my legs crumple under me and I fall backward onto the couch. Unable to catch my breath, I begin to turn blue. Mom calls 911 and, within minutes, a fire truck arrives. They bring in a fifteen-liter oxygen condenser and, after they reattach my cannula to their machine, I feel much better. After settling, though, I notice the wet couch cushion beneath me. During the asphyxiation, I urinated. I have become totally helpless.

  During December, I spend more time in the hospital than at home. I’ve always wanted to die at home, but I had hoped to do it as an old lady. In my mind, death has never been the worst thing. Only now, as a twenty-eight-year-old experiencing the slow deterioration of my organs and body firsthand, do I recognize that the process of dying is a humiliating, excruciating horror show. For the past week, I’ve been in and out of Kaiser’s emergency clinic. At 1:30 a.m. on Christmas Eve, I’m discharged yet again. There’s nothing the doctors can do but try to stabilize my blood pressure.

  Yoni carries me into the house. He sits me up on the toilet seat while he readies my toothbrush and gives me a cup to spit into. Carrying me to the bedroom, he places me on the mattress. Kneeling in front of me, he unbuttons my shirt, resting his head on my chest for a few moments. Then, cupping my breasts in his hands, he gently kisses the scar from my surgery. He removes my shirt and pulls a cotton nightgown over my head.

  As he takes off his shirt and jeans, I feel as though there’s a cement wall between our future together and our present. Even so, I can’t imagine either of them without him. As I lie down, my diaphragm feels immovable.

  “Honey,” I ask, struggling to breathe, “could you take me to the couch instead?”

  “Is that really more comfortable for you?” he asks, skeptical. I’ve spent many recent nights on the couch, sleeping sitting up.

  “Yes,” I assure him.

  He brings the down comforter out along with a number of pillows and one of my breathing devices. Then Yoni places one arm under my knees and the other behind my back, picking me up and placing me on the couch. He sits down next to me, and lays his head in my bony lap.

  “Honey,” I protest, “you need a good night’s rest tonight.”

  “And there’s no way I am going to get that sleeping in the bedroom without you,” he rejoins, craning his head to kiss me. I say a prayer, we read the Christmas story, and he falls asleep in my lap.

  With ten liters of oxygen hissing into my nose, I feel like I felt on that airplane to Denver months earlier. I don’t dare go to sleep for fear I’ll never wake up again if I do. Blowing weakly into my green plastic breathing tool, my ribs ache from hyper-expanding them over and over again. My arms ache from blood draws. My legs ache from lack of oxygen. My back aches from not having slept in a bed for days. My joints ache from medications.

  Inhale. Exhale. It seems if my focus wanes, I’ll drop into eternity’s abyss. Is this how a life ends? It could be worse. At least Yoni is here. But I don’t want to die now. I don’t think I’m ready. Not yet. There’s so much I haven’t done. God wouldn’t have me go like this, I tell myself, forcing my diaphragm up again against the resistance of the breathing aid. About to drift off, a thought jolts through my mind: I will not ruin another Christmas with my death. It keeps me going for a few minutes longer.

  It’s the longest night of a life that has seen many long nights. I fight through every moment of darkness with my entire soul. When dawn arrives, I know I’ve made it. As the sun rises, I wake Yoni.

  “It’s so early,” he yawns. “We didn’t get to bed until nearly two.”

  “I didn’t sleep at all,” I confess.

  As soon as Yoni hears this, he snaps awake. “Baby, why didn’t you wake me up?”

  “You were tired,” I whisper as he runs to retrieve my blood pressure machine. Placing the cuff around my gaunt arm, it inflates until I can’t feel my fingers. It reinflates several times before giving us a final read.

  “That can’t be right,” murmurs Yoni. He goes to get another cuff, then another machine. They all reach the same conclusion: 220 over 200. It’s time to go to the ER.

  Mom comes to the house and we drive to the hospital together. Admitted emergently, I’m sent directly to triage, where I’m placed on fifteen liters of oxygen. It’s a relief to finally be able to breathe. Doctors scurry around as Mom is, once again, by my side. The nurses prepare to move me to a different ward. As they pull me away from the wall, my oxygen stops. I can’t move, speak, or breathe. Time seems to freeze as they wheel me away. Is this death?

  A chorus of alarms sounds.

  “She’s turning blue!” shouts Mom. “Do something! She’s turning blue!”

  Backing away from me as she runs to fetch a nurse, Mom bumps into my unattached oxygen tank. It crashes to the floor.

  “Oh!” whimpers Mom as it lands squarely on her toe.

  Grimacing in pain, she yells, “Her oxygen! It’s not hooked up!”

  The nurse struts in, seemingly annoyed by Mom’s histrionics. She grabs at my cannulation, just to be sure. “Oh my goodness,” she says under her breath. Stopping the gurney, she quickly reattaches me to the pump.

  I gasp back to life. “Mom,” I say faintly, “I am so sorry!” Her toe is broken, I’m sure of it. The injury seems downright gratuitous. And yet, we would not have realized what was wrong without it.

  The rest of the day is a blur. Family comes in and out, trying to carry as much Christmas cheer with them as is humanly possible. With my siblings in the room, we begin to sing. “Children Go,” “O Come, O Come, Emmanuel,” “Hark, the Herald Angels Sing,” as many other carols as we can remember.

  The doctors decide to medevac me to Cleveland so I can wait for a match there. But the question of who will accompany me on the plane is quickly turning into a major family feud. My mother and my husband both want to be with me, unsure of whether I will survive the trip. One after the other, they visit my room to explain the other’s inconceivable nerve, insisting they only have my best interests at heart. If either of them had just left in the car instead of staying behind to argue, they would have arrived in Cleveland before I did. I wish that, for a moment, either of them could be gracious and exhibit a little compassion toward the other. But just as I’m about to ask Zenith to fly with me instead, Mom relents. In truth, Yoni should have done the same thing earlier. I resent facilitating family pettiness over my deathbed. But I suppose even life’s bleakest moments deserve an unworthy distraction.

  We fly out around ten. When we arrive near midnight, Dr. Budev is there to admit us. She had planned to spend the holiday with her family in North Carolina, but she’s delayed her departure to make sure we’re taken care of first.

  As I’m getting set up in my room, Yoni waits outside. Dr. Budev leans toward me—

  “Charity, I need to know, when is enough, enough? When should I tell Yoni and your mom that it’s time to say goodbye?”

  Despite the fact that I’ve stood face-to-face with death for nearly a decade, I’ve never given her question much thought. Sure
, I have a living will. Before my first transplant, I told Kimber that if I was ever brain-dead or in a coma for more than three months, it would be time to let go. But now I’ve been in a coma. I’ve been on a respirator and every other form of life support.

  “Marie,” I say, “if I’m brain-dead, donate everything you can. But if I’m going to die, it’s very important to me that my husband and my mother agree on the best way to move forward.”

  She nods her head, skeptical yet supportive.

  “And, Marie,” I add, “thank you for making sure we got here.” I don’t want the last thing she remembers about me to be our end-of-life chat. “Can I sing for you?”

  On the dark Christmas Eve, on fifteen liters of oxygen, I take a deep breath and begin to sing—

  Silent night, holy night.

  All is calm, all is bright.

  Round yon Virgin Mother and Child.

  Holy Infant so tender and mild.

  Sleep in heavenly peace . . .

  A man from the local congregation stops by. He works in the hospital and heard I was inpatient through the grapevine. He gives me a blessing, promising me that my voice will be restored and that I’ll live. He tells me I need to be patient, but promises my sojourn on this earth will be lengthened.

  Everything sounds great except for the line about patience. My time is running out so quickly—haven’t I been patient long enough?

  A Christmas feast prepared by friends for the whole family sits uneaten on their dining room table; our gifts for each other languish unopened at home. I’ve scattered the family and left another perfectly good holiday in tatters. Who’d have thought that the Grinch who stole Christmas would have an oversized heart and a name like Charity Sunshine?

  Certainly a match will come quickly. But months have already passed, and I’m now at the very top of the transplant list. My situation is growing more desperate by the hour. I’ve been patient. Now, it’s time for my miracle. Every moment I feel like things can’t possibly get worse, so how is each previous minute always easier than the one I’m currently facing?

  December 26, Yoni returns to work. We’ve used all of his vacation and sick days for hospital visits and he won’t qualify for family medical leave for another month. With all of my physical challenges, it seems like it’s only fair if work, insurance, and other obligations would just take care of themselves. But sometimes mercy only plays a bit role in life.

  Within the hospital, things are somewhat different. Mom and Zenith stay with me, and they’re accompanied by a rotating cast of family members. Kind and long-suffering, they do whatever they can to make me more comfortable. But nothing really helps.

  On New Year’s Eve, Yoni returns. We watch a concert on television and things are as normal as they can be if you happen to be dying in a hospital room over the holidays. But, over the course of an hour, there’s a shift in my condition from general misery to something far more serious. My heart feels like it’s choking me. Frantically, I call to Mom, Yoni, and Zen.

  “Charity,” Mom assures me, “look at your numbers.” They’ve stabilized considerably since I arrived a week ago. “You’re fine!” she insists.

  Yoni takes my hand. “Baby, she’s right. You’re OK. Just try to calm down.”

  But my concern turns to hysteria. I feel my body begin to shut down—my heart, pumping out a few last beats for old times’ sake before closing up shop for good. If my doctors can do something to fix me, I need them to know there’s something wrong while there’s still time. But then again, this feels like it is my time. Maybe the only thing that matters right now is the people already around my bedside. As pain closes in around me, I say the only thing that really matters right now or ever—

  “I love you! I love you all so much. It’s my time now.” With that, I lose consciousness.

  ACT III, SCENE 3:

  Adriana

  As Adriana awaits her entrance, she explains the source of her creative gifts.

  Ecco, respiro appena,

  Look here; I’m scarcely breathing . . .

  Io son l’umile ancella

  I’m but the humble servant

  del genio creator;

  of the brilliant creator.

  Ei m’offre la favella

  He offers me the words

  Io la diffondo ai cor . . .

  that I impart to the heart . . .

  Del verso io son l’accento,

  I’m the verse’s music,

  l’eco del dramma uman

  the echo of human drama,

  il fragile strumento

  the fragile instrument,

  vassallo della man . . .

  the lowly hand-maiden . . .

  Mite, gioconda, atroce,

  Timid, joyous, terrible,

  Mi chiamo Fedeltá;

  I’m called Faithfulness.

  Un soffio è la mia voce,

  My voice is just a whisper,

  che al novo di morrá.

  which, with the new day, will die.

  —FRANCESCO CILEA, ADRIANA LECOUVREUR

  Alarms sound. Like they always do. The emergency team descends. Like they always do. They bag me until, once again, I can be intubated and moved to the ICU. The doctors and nurses work like my life depends on it. It does. My lungs won’t synch with the respirator though, and the excess carbon dioxide is slowly raising my blood’s acidity to dangerous levels.

  Late one night, Dr. Budev insists on driving Mom to the hotel. She hasn’t left my bedside in several days. They walk to the car in silence.

  Sliding into the leather seat, Mom breathes in deeply. Marie and she have been through so much together. She’s family.

  Driving down Euclid Avenue, Marie speaks first—

  “Annette, how are you taking all of this?”

  “Oh, well, it’s a lot of work. But once we have lungs, Charity will be perfect again.”

  They stop at a red light. Dr. Budev turns to look at Mom. “Annette, Charity is extremely sick. I think you need to understand that, sometime soon, we’ll need to talk about what she would want. About how she would want to go.”

  Mom looks back at Dr. Budev, sighing. “I know, Marie. I know how close she is. But with the kids here, with everything that has happened, I have to be positive. There has to be someone in that room who still believes that she’ll get better.”

  Dr. Budev nods gravely. “Annette—we can wake her up. You can gather the family—get everyone here at the same time. They can say whatever they would like to her. You can all be together.”

  “They don’t want to say anything to her.” Mom shakes her head. “Not until after the transplant.”

  “I just want to give you whatever you need for this all to be as peaceful as possible,” Dr. Budev says, pulling into the hotel parking lot.

  “Marie,” Mom responds, matter-of-factly, “here’s what I need from you: I need you to call every source for lungs that you have. Do you ever call them?”

  “Not really,” she confesses. “It doesn’t exactly work like that.”

  “Call them. Beg them to let you have the first set of lungs that might work for her.”

  Dr. Budev takes a deep breath. “Annette, I promise you—I’ll do everything I can.”

  They say good night and Mom starts to walk toward the hotel’s dingy lobby, past a group of men smoking outside. It’s not until Mom is inside the elevator that she realizes Dr. Budev had been asking her to say goodbye. Mom leaves before the elevator doors close and comes back to the hospital room. She pulls two spindly chairs up next to my bed and sets in for the night.

  The next day, two pulmonologists walk by the hospital room and Mom stands up from her seat. “Hello, Doctors.” She waves at them as they pass. “How are you?”

  They acknowledge her with nods. “How are you?” murmurs the first, more rhetorically than not.

  “Well, we’re just hoping to get lungs for Charity,” Mom chirps optimistically.

  “Yeah. You don’t want that right now,” m
umbles the second.

  “Excuse me?” Mom stops them. “Why would you say that?”

  “Um. You just don’t want her to get lungs right now. Nobody’s going to touch her except for McCurry, and he’s out of town,” the other explains haltingly.

  “I don’t understand . . .” she says, pressing for clarification.

  “Well, we don’t usually transplant patients as . . . ill as she is. The only person who might is McCurry,” continues the doctor.

  “Well, Doctor,” Mom says, “she’s just like your daughters, except her lungs don’t work. As soon as you find the right lungs, she’ll be as good as new.”

  Flashing Mom pitying glances, they say goodbye and move on.

  Later that afternoon, a red light blinks on Mom’s phone. It’s a voicemail from Irene, a dear friend who happens to be an acclaimed doctor herself.

  Annette, I was so happy to get your call. You and the kids are in my thoughts. Hearing blood gas numbers like that for someone who’s alive . . . I’m amazed they’re going to do surgery. It must be an incredible surgeon because that just doesn’t happen. I mean, those numbers are past any reasonable expectation of life. But I just wanted to send my love. Talk to you later.

  Mom looks at me. My stomach is distended like the victim of a horrible famine. I have tubes going in and out of every opening in my body with a couple more piled on top for good measure. I’m pathetic. Burying her face in her hands, she tries to figure out what she’s supposed to do. Logically, she knows that the doctors are right. There is a leering neon arrow pointing to the inevitability of my death. But when she prays—when I receive blessings and when she reads her scriptures—she knows there’s still hope. Still patience. Still life. As she sits there, trying to decide if she’s been wrong to keep pushing, a steady voice comes back to her over and over again. She’ll live, it whispers deep inside of her.