The Encore

by Charity Tillemann-Dick

  I snort to myself. Never before has “baby” been a more apt term of endearment. I can’t speak, I can’t walk, I can’t eat solid food. I rely on Mom for everything. I haven’t sat on a toilet in weeks and I’m pretty sure everyone in this ICU has seen my bare bottom. I thought this transplant would allow me to take my life back, but the only thing I’m taking back now are my assumptions about whether I’ll ever recover from this ordeal.

  It doesn’t get better. One night, I lay awake as the ventilator noisily pushes air into my body through the tube in my trachea. Just as I feel like my chest incision is about to burst from the pressure of my hyper-expanding lungs, the machine sucks the air back out. It’s miserable. I can’t go on like this much longer. No sooner does the thought enter my head than I feel pressure on my chest. But this time it’s different. The ventilator is still on, but I swear I’m suffocating. Shaking my head back and forth, I try to get Mom’s attention.

  “What’s wrong, sweetie?” she asks. Stress shoots through my body as the sensation worsens. Alarms and buzzers begin to sound.

  “Hello?!” Mom shouts. “We need a nurse immediately!”

  An unfamiliar respiratory therapist rattles through the curtain. Ducking behind my bed, she switches something on. Suddenly, I’m all right.

  “What was that?!” demands Mom.

  “Well, if we can get her off the respirator here, then she doesn’t need to go to the respiratory care unit,” the therapist chirps back.

  “Where’s Chelsea? Bill? Matt or Marco?” Mom cycles through the list of my regular respiratory therapists. “She’s never had an issue weaning off the vent with them. She hasn’t even realized she’s doing it!” My eyes widen realizing this deception.

  Another man enters the room. Medium height with thinning hair, a reddened nose, and tired eyes. “Annette,” he explains, “discomfort is inevitable in this process.”

  “Well, I think that’s pretty obvious, David,” she shoots back. “None of this has been ‘comfortable’ for Charity.”

  He sighs and crouches down next to my bed—“Charity, I’m David Wheeler. I’m the head of respiratory education here at the hospital. I know it feels like you’re running a marathon every day—probably like you’re drowning at the same time—but the longer you stay on the vent, the harder it will be to get off. You’ve been doing so well we decided to be a little more aggressive. I’m sorry if it was too much. Do you want a break?”

  Reluctantly, I shake my head no. I’m embarrassed at how tired I am all the time. I’ve only been lying in bed or sitting in my chair, but there’s no rest. I’m constantly exhausted. The few things I do—helping air in and out of my lungs, holding up my body—seem to expend more energy than I have to begin with. Most of the time, I feel like the dictionary definition of “pathetic”. But for the first time, it seems someone else understands my complete fatigue.

  Staring genuinely into my eyes, David squeezes my shoulder. “I promise that you won’t drown.”

  It’s exactly what I need to hear.

  After the years of care I’ve received in both places, I can happily and confidently state that both the Cleveland Clinic and Johns Hopkins richly deserve their burnished reputations as two of the best hospitals in the world. The former represents the cutting edge of integrative medicine; the latter embraces an older style of medical apprenticeship. Regardless of their different approaches, both institutions jointly excel in one meaningful respect: saving lives that seem past saving. Lives like mine.

  But even the best hospitals are unforgiving workplaces. Doctors do the work of healing—a purview formerly relegated to magicians, saints, and angels. For patients and families, it often feels like there’s no room for human error, miscalculation, or even a less-than-sympathetic bedside manner. Oftentimes, there isn’t. Yet, even after years of study and scores of lives saved and improved, physicians remain eminently human. And the pressure inevitably invites discord. People always expect their health-care professionals, especially their doctors, to know more and be better. But while wisdom and goodness are in ample supply at the clinic, no doctor is omniscient or omnipotent. They are limited not only by their own subjectivity—personal histories and character flaws—but by all the untold mysteries still concealed within an infinite amount of information. The best medicine is collaborative—often minimizing risks of human error. My challenge is knowing when to take center stage, highlighting possible mistakes or oversight, and when to fade into the chorus of this human drama.

  After a long day of work on the respirator, Mom enters with a glass of Sprite. She closes the curtain while I enjoy my contraband. All of a sudden, the curtain is flung open. A square-shaped man with dark hair and a shiny scalp walks toward Mom and takes the Styrofoam cup from her hands. He takes a whiff.

  “What is this?” he sneers.

  “It’s Diet Sprite,” chirps back Mom.

  “You’re giving this to her?” he asks.

  “I’m just wetting the sponge with it, Doctor,” she clarifies. “It’s the one thing that Charity enjoys here.”

  “She’s not in the hospital to enjoy it. She’s on the brink of death and you are putting her at risk for aspiration. She hasn’t even had the swallow test!” he hollers.

  “Could I please speak to you in the hall, Doctor?” Mom calmly steers him to the other side of the curtain.

  Amused that Mom thinks I won’t be able to hear them, I eavesdrop on their sparring from the relative peace of my sand bed.

  “A huge amount of work has been done to keep her from dying and I won’t let you come in here and destroy that,” the doctor hisses. “I will not let you back in that room if you do not promise me that you will not give the patient ice or Diet Sprite again.”

  How dare he. I’ve never seen this doctor before. My mother, on the other hand, has been at my side, twenty-four hours a day, seven days a week. Mom knows my charts, my condition, my medications, my bedsores, my wounds, my tubes, my preferences, my strengths and weaknesses. Better than anyone in the entire hospital. Better than anyone in the world. How dare this brute threaten her! I don’t care that aspiration is, technically speaking, a medically valid concern. That’s not important to me. But ice, Diet Sprite, and Mom are everything I have right now. So why does this doctor seem so intent on taking them all away? I have to stop him. As the conversation continues to escalate outside, I ask the nurse next to me to please open the curtain. She obliges and I wave down the doctor.

  “Doctor,” I mouth, “can I just have a swallow test?”

  “What?” he snaps.

  The nurse translates: “She wants the swallow test here.”

  “In the ICU?” asks the doctor.

  “Yes,” replies my nurse. “We’ve been trying to get her up to a real unit for a few days with no luck.”

  “I know I could pass a swallow test,” I mouth hopefully.

  “What is she saying?” asks the doctor.

  “That she’s ready for the test.”

  He walks over near the foot of my bed. “I promise that after we get you up to a real room, we’ll give you a swallow test,” he says with an air of condescension.

  “No, thank you,” I mouth. “Now, please.”

  “I can’t deal with this.” He throws up his hands and walks away. “Nurse, make sure she doesn’t get any more Sprite.” I glower at his back as he leaves. All I want is a break for Mom . . . and maybe some Diet Sprite.

  Why haven’t I seen Yoni yet? My comatose dream was crazy, but at times instructional. For example, when I woke up, I knew beyond doubt that Yoni was the love of my life. But each time I ask Mom about him, she says the same thing: “He’ll be here soon.” She’s been saying that for nearly a week now.

  Yoni is in his final year of grad school at the University of Chicago. I know he has work and school and that he lives 500 miles away, but all I want is to see him. To hold his hand. To hear him say he loves me. Initially, I take each of Mom’s reassurances literally. I stay up late into the night, sure
that Yoni has just caught a late flight into Ohio. When he arrives, it will be magical: I’ll tell him how sorry I am for wanting to break up with him—how much I love him and how I want to be with him forever.

  One night, as I’m staging our overwrought reunion scene in my head, I see him. He’s standing in the distance, his distinctive plume of black hair parted on the side with a natural mini-Elvis curl in front. Some combination of joy, desire, and love fills my body and beams out through a smile I’ve been saving just for him. Even without my glasses, I can tell he’s smiling too. He’s lost weight, I think to myself as he nears. Finally, he speaks: “What a pleasure to meet you, Miss Tillemann-Dick! I’ll be filling in for Paula tonight.”

  It’s not Yoni. As the new tech takes my vitals, I try to mask my disappointment. But the tears flow despite my efforts.

  “Annette,” the doppelgänger calls to my mother. “Something is wrong.”

  “Honey! What’s the matter?”

  “Yoni!” I mouth in anguish.

  “He’s not here, honey,” replies Mom.

  “I know! Why not?!” I demand.

  “Slow down, sweetie. I can’t understand you.”

  I try to collect myself, pausing between every word—

  “Why . . .”

  “Why . . .” Mom repeats.

  “Won’t.”

  “Won’t.”

  “Yoni.”

  “Yoni.”

  “Come?”

  “Oh, Chary.” Mom smiles and shakes her head. “You wanted to break up with him before the transplant!”

  “I was wrong!” I mouth through silent sobs.

  “I told you it was a mistake,” she reminds me.

  I sob harder.

  “Oh, honey, he’ll be here soon. If you just—”

  “No, Mommy! Not soon. When?!” I demand, halfway certain she’s just trying to hide the fact that Yoni finally followed my advice and found somebody else. Someone less complicated.

  “The day after tomorrow,” she clarifies to my happy surprise. I stop crying. “He’s coming Thursday night. After school.”

  “Promise?” I ask, unable to wipe the tears from my sodden face.

  Mom finally understands. “Charity, that boy loves you. If you ever want to get rid of him, it’s not going to be that easy.” She leans down to kiss me on the forehead, drying my face with her sleeve. “And I love you too.”

  I start to cry again. While I’ve been preoccupied by thoughts of myself and Yoni and Sprite for the past two weeks, I’ve all but disregarded the person sleeping at the other end of my bed every single night. No one could ever understand what Mom has done for me. Probably not even me. She’s been my protector. My friend. My cheerleader. She’s made the entire hospital ward believe that if they do their job—if they go above and beyond what’s expected of them—I’ll survive. I’ll thrive. Against all odds, I’ll sing again. Despite my hopeless situation, she really believes it. She’s made all of us believe it, too.

  “I love you too, Mommy.” If I could speak, I’d say it in a whisper. She smiles, resting her hand atop mine as I drift toward sleep.

  Music schools and summer programs often stage operatic potpourris: productions made up of disjointed scenes from different operas combined into one show. Disparate characters make cameos to allow inexperienced singers coveted minutes of stage time. The ICU—where I’ll ultimately spend nearly seven weeks—is strangely evocative of these patchwork operatic productions. A constantly shifting cast of nurses, doctors, neighbors, family members, and friends enter from stage right or stage left for discreet moments of tragedy or commotion, comedy or intrigue—all uncomfortably strung together by the brief intermissions of my semi-waking naps.

  One day, I awake to a man with a broad smile, shaved head, and tightly packed physique flexing my foot back and forth. It’s Dean, my physical therapist.

  “Annette,” he says with a kind, raspy voice, “I’m just so impressed at how you’ve been working with her. This passive motion does wonders for regaining muscle strength.” He looks up at me with a grin. “So whaddya say, Charity? You want to walk?”

  Finally!

  After giving me and Mom a long list of exercises, Dean exits. I make my own goal: by the end of today, I’m going to move my arms. All afternoon, I silently shift my shoulders from side to side, heaving my spindly arms onto my chest. Once that’s done, I work to bend my elbows and rest them on my bed rails. By the time the evening shift arrives, I’ve finally done it: my hands are resting on my torso, fingers interlaced just above my diaphragm. My progress is so slow that no one even notices what I feel is a major achievement. I’m too embarrassed to call any attention to it myself (or how much it exhausted me). Soon, I just fall asleep.

  When I wake, my fingers are locked in the same position. I try pulling them apart, but to no avail. I’ve pinched a nerve. Now, my hands are stuck in a clawlike position and my left arm won’t straighten. For every step forward I take, I go two or three back. Clutching my newly lame arm, I feel hopeless.

  Later that evening, Mom stops reading to me to go talk to a man in a long black overcoat at the end of the hall. Through a crack in the curtain, I see him nod his head as Mom speaks, glancing back toward me occasionally. As their conversation continues, I wonder if he’s a doctor or a nurse. I’ve met Dr. Yun and Dr. Benjamin—the surgical fellows who assisted in my transplant. Could this be the legendary Dr. McCurry? He turns so I can see his face.

  It’s Yoni?

  It’s Yoni!

  “Look who’s awake!” he says, opening the curtain and coming to kiss my forehead.

  “I was beginning to think you’d never visit!” I whine.

  “Huh?” Yoni is clueless.

  I mouth it two more times.

  “Hon,” he finally says, “I love you so much, but I have no idea what you’re trying to say.” He takes my hand and kisses it instead.

  Mom walks over—“Chary, Yoni’s going to stay with you for a while.”

  She leaves the ICU, and Yoni smiles at me. “I missed you.” He hasn’t quite figured out how to read my lips, so he talks instead. He tells me for his birthday he asked all of his friends for extra airline miles so he could visit me every other weekend. In Chicago he’s working three jobs on top of school—it’s a lot for anyone to handle, and I start to fear that adding a girlfriend in critical condition is a recipe for failure. But it’s like he’s read my mind—“You know, I was worried that with everything this semester, my grades would take a beating. But you know? They’ve been the best grades of my academic career!” I smile, grateful. Relieved. Two of his professors want him to pursue a PhD. He’s received a fellowship to travel to Israel next spring and he has a job offer from a major foundation. I’m so proud of him.

  “Yoni,” I say with my sweetest face.

  “Yes, Chary?” he says, smiling back.

  Batting my lashes, I mouth, “I want Sprite.”

  “Huh?”

  “Sprite.”

  A stern expression quickly replaces his doe eyes.

  “Sprite? No! You aren’t supposed to have that, Chary!”

  “Mom gives it to me!”

  “Well, you should know I’m not your mother,” he shoots back.

  I protest, but he’s immovable. Salty tears of betrayal begin streaming down my face. Ever since I woke up, all I wanted was to see Yoni. But now that he’s here, he’s forcing me to choose between the two things that are most important to me: Yoni and Diet Sprite. He should have just stayed in Chicago. . . . No. Stop being spiteful, Charity. But it’s too late. The gossamer is gone. Yoni is no longer a fantasy I can conjure to entertain myself during dreary days in the ICU. He’s real. He’s here. And he’s as maddening as he was when I first fell in love with him.

  The curtains open and Mom’s head pops in. “Yoni,” she chirps, “why is Charity crying?”

  “She wants soda or something, but the doctor told me she can’t drink anything,” he explains.

  “Oh. That is
what they say. But she actually swallows quite well!” Mom says encouragingly.

  “Annette,” replies Yoni, dead serious, “I’m not going to just sit by and watch while you threaten Charity’s life!”

  Mom and I roll our eyes at each other.

  “Well, then why don’t you go get dinner? I’ll stay with Charity and when you get back, I’ll go and rest again. How’s that?”

  “I haven’t eaten since this morning . . .” Yoni reflects, his stomach easily distracting him from his crusade. “That would be great. I’ll be right back.”

  “Take your time!” Mom calls after him.

  After Yoni’s had his dinner and I’ve had my Sprite, Mom goes back to her underutilized hotel room to sleep in an actual bed. Yoni and I settle into our old hospital routine. He takes out two books from his carry-on and pulls up some interesting articles on his phone. The first one he starts reading is about suicide bombings in Baghdad. As he relates the brutality of humankind, the comfort of our old habit is replaced by anguish. I’m so tired of pain—both my own and others’. I begin to cry yet again. Yoni looks over and stops, mortified. “Chary, honey, are you OK? Does something hurt?”

  “Please stop,” I mouth. “Too sad.”

  “Oh . . . Oh, Chary, I’m so sorry. What would you like to read?”

  I point to my scriptures, left open to the Sermon on the Mount, and he begins anew:

  “Blessed are the sick, are the poor, are the meek, for they shall inherit the kingdom of God . . .”

  I drift off to the sound of Yoni’s voice.

  ACT II, SCENE 2:

  Norma

  The high priestess Norma offers a prayer and a plea for things to return to the way they once were, promising protection and fidelity.

  Ah! bello a me ritorna

  Ah! Return to me beautiful

  Del fido amor primiero;

  In your first true love;

  E contro il mondo intiero . . .

  I’ll protect you

  Difesa a te sarò.

  Against the entire world.