The Encore

by Charity Tillemann-Dick

  It’s a quiet day in ReSCU. Mom’s talking to our neighbor’s wife from the doorway and I’m more alone with my thoughts than I’ve been for a while. I think back on people I’ve met, places I’ve sung, opportunities I’ve had and missed out on. A few years earlier, around my twenty-second birthday, I performed at a benefit with Marvin Hamlisch. Composer of A Chorus Line, Pulitzer Prize winner, one of only twelve people in history to EGOT (win at least one Emmy, Grammy, Oscar, and Tony)—Marvin was the stuff of legend. A musical theater Great of the first degree. We worked together for two weeks leading up to our performance.

  Marvin had a Midas touch for crowd-pleasing scores. He believed in giving people something familiar, but still new to them. I think back to one of our rehearsals. After dashing through “I Could Have Danced All Night,” from My Fair Lady, Marvin asked me whether I was in school. When I confirmed his suspicions, he chided me:

  “You shouldn’t be in school. You need to be performing. Don’t get me wrong—conservatory is great for some people. But you are a performer! You need an audience. For you, they’re the only teachers who matter.”

  Marvin told me about his first job as a composer. He was playing piano at a party where he met the director Frank Perry. In passing, Mr. Perry mentioned they were looking for a score for his next film, The Swimmer. Marvin got all of the information out of Mr. Perry that was possible (including his contact information) and by the end of the weekend—it might have even been the next morning—he had delivered a score for the film. Then he returned to the topic at hand: my career.

  “Let me get you onstage! That shouldn’t be hard . . .” He continued: “A girl like you with a voice like yours just needs to sing one standard—any crowd will fall in love!” But I demurred. There was so much more I wanted to learn—so far to go until my voice was perfect. He shook his head at me. “People who wait around for things to be perfect just wind up missing the boat. Audiences don’t want perfection. They want connection.”

  Marvin and I kept in touch, but I never did take him up on his offer. Just thinking about it, my face flushes red. One of youth’s follies, I suppose—turning down the opportunity of a lifetime as it stares you in the face.

  Marvin always encouraged me. But I’m sure he wondered why I didn’t jump to perform with his blessing. Lying in bed, I do too. I don’t quite regret it—who knows? Maybe if I’d gone down that road, I never would have made it back to Europe to sing opera. My disease could have progressed more quickly. I probably never would have met Yoni. I’m satisfied with my decisions. That said, I’ve learned my lesson. If I ever get out of this hospital, I’m not going to overthink things. If I ever learn to breathe again—to sing again, I’m moving forward. I’m going to reach out and snatch opportunities before they pass me by.

  The pneumonia is gone and it’s time to finally free myself from this vent and this hospital. But filling my lungs is so much work. I can’t quite believe I did it for a quarter century without thinking about it. Sitting in the corner scribbling furiously on her notepad, Mom is entirely immersed in her phone conversation. Since I’ve been in the hospital, she’s been my eyes, ears, arms, hands, mouth, and neck. She reads every letter, returns every phone call. I couldn’t survive without her. She does too much—she always has and always will—but, in my case, too much is precisely what the doctor ordered. Mom hangs up the phone and looks at me resolutely.

  “I know what your problem is. That was your old director, Karen. Her husband was on a ventilator.” I nod tentatively in recognition, and Mom continues, “She says you’re forgetting how to sing. Breathe from your glutes and stomach muscles and you’ll be off the vent in no time.”

  I furrow my brow and look up at her. Karen’s absolutely right. I’ve been so preoccupied with getting out of the hospital, I’d entirely forgotten that I spent the last half decade training my body to breathe correctly. I’d be embarrassed if I wasn’t so excited to move forward. No use wasting time on regret now.

  While my teachers would be ashamed to hear it, all I’ve been thinking about up until now is filling my lungs with air. Deconstructing everything I’ve learned about medicine and singing, I break down breath, one body part at a time.

  Lungs are like two, spongy balloons. While efficient receptacles for air and blood, lungs are passive—more song than singer. Similarly, bones are important to breath, but useless on their own. Everything depends on muscles. The intercostal muscles that link ribs together are responsible for 25 percent of inhalation. In turn, most of their activity directly results from the proper use of a host of other muscles. My diaphragm, a shark-mouth-shaped muscle located just under the lungs, should spontaneously contract to pull air into the lungs—pushing the stomach and everything below it out in the process. When it relaxes, carbon dioxide escapes and the lungs deflate. If the rest of my muscles hadn’t atrophied after my surgery, the diaphragm would work spontaneously—automatically engaging my abdominal, posterior, and lower back muscles. It’s almost as if my breathing organs are actually my belly, lower back, and butt cheeks. I begin to imagine I’m breathing from my bum and the task becomes markedly easier.

  The more I think about it, the more I realize that my breathing mechanism is like an entire opera company—the lungs are two miraculous, high-maintenance diva principals. The ribs and the intercostals act as the stage crew and supporting roles. The conductor, Maestro Diaphragm, is totally useless without the director (lower back muscles), the orchestra (abs), and the chorus (glutes). Some parts receive broad critical acclaim. Others do their job without fanfare. But remove a single player and the grand opera collapses.

  When Dean comes in for physical therapy, I ask him to focus on my abdominal strength. He introduces me to an entire regime of belly-strengthening exercises. With each set, breathing gets easier. Soon, instinct takes over and breathing off of the ventilator is easier than breathing on it. Within days, I’m nearly weaned off the ventilator and the hospital has transferred me to a step-down unit—my final destination before discharge.

  Mom begins packing up our tight, stuffed room. I watch each card come down with a sense of melancholy. They’ve sustained me during my time here in ReSCU, but somehow I know that, once they’re off the wall, I’ll never see them again.

  Mom plops down onto a chair, exhausted. “How are we going to move all of this stuff alone?” she exhales concernedly. Almost as soon as she asks it, my brother Corban pops his head into the room. It’s nothing less than a little miracle.

  We’ve always called Corban “Captain America.” Since he was young, he’s had a warm assurance about him—it’s hard to feel like a problem won’t be solved when he’s around. Corban plants a kiss atop my head and does the same to Mom before methodically hoisting a stack of three boxes up and ferrying them to our new room—a ten-minute walk away. By lunchtime, the last load is safely transported. Then Rodney and Raven—my lift team—arrive to transport me to the new unit.

  When we arrive, Mom and I wait in the entrance, almost reverent. Clean, modern lines, large windows, walls of white, heather gray, and dark leather—this room is the opposite of the tiny, cramped space I’ve lived in for the past month. A doorway separates a gracious guest lobby from my room, where a large TV screen covers the far wall. Invisible cabinets swallow messes of tubes and cords into apparent neatness. If not for my bulky hospital bed, the room could have been confused for part of a chic bachelor pad in San Francisco.

  “I think Jeanne might have pulled a few strings, sweetheart,” Mom whispers beside me.

  Early the next morning, Corban leaves—taking a load of cards and fuzzy socks with him and officially beginning our attenuated move out. We’re finally progressing toward some sort of in-patient normalcy. I exchange my well-used hospital gown for a velour tracksuit from Jeanne. The elastic on the waistband feels strange around my waist and the hoodie’s zipper bumps up against my incision site. Still—it’s remarkably good to be wearing actual clothes again. For the first time in months, I dust off my makeup b
ag. With the help of a little mascara, some lipstick, and concealer, I look almost healthy. My aunt Katrina arrives for a weekend visit just as the doctor on call comes into my room.

  “Wow,” he says.

  “Wow,” he repeats. “You look fantastic. You’ll be going home any day now.”

  “Any day?” asks Mom, skeptically.

  “Well, look at her!” He gestures toward me. True, I no longer have a half-dozen tubes in me. But I’m still very much in recovery. I have open wounds from surgery and bedsores, I weigh only ninety-five pounds. I can’t climb stairs. But I guess with makeup, my gauntness comes off as almost chic. I look like I’ve been institutionalized for anorexia instead of for a lung transplant.

  “I would release you this weekend, but we’re short-staffed,” he says, apologetically. “So I guess we’ll have to push it out to Monday.”

  “I think that’s wise,” my aunt scoffs, shooting a sideways glance to my mortified mother. “And how exactly should Charity fill all that dead time between now and then? Perhaps by gaining a couple dozen pounds?”

  He looks down at a clipboard. “It says here she still can’t climb stairs?”

  “Oh yes, there is that,” says my aunt.

  “So do that! Get out. Explore the hospital. Have a good time.”

  “Out of the ward?” Mom asks nervously.

  “Sure! Make a night of it!” He ruffles through his papers while glancing back up at me a few times. “Wow,” he says, shaking his head. “You really look great. So nice to see you like this.”

  He steps out, and my mom and Katrina burst into laughter.

  “That,” says Katrina, “is why we need more female doctors in the world. Have a pretty girl put on a little makeup and suddenly, they’re cured.”

  They continue to laugh at the contrast between my emaciated frame and the doctors’ ambitious timeline for my return home. I don’t find it so funny. And I’d prefer they stop mocking the potential end of this chapter of our lives.

  “That’s not even the worst part!” mom exclaims, wiping tears from her eyes. “Charity, do you remember him?”

  “No . . .” I admit tentatively.

  There’s a glint in her eye as she turns toward Katrina again. “That’s the doctor who tried to throw me out of the ICU for giving Charity Diet Sprite!”

  They burst out in fresh peals of laughter. My gratitude for his optimism dissipates slightly.

  When they calm down again, I pipe up, “I’d like to go out to dinner.”

  Mom and Katrina look at each other skeptically.

  “You go and climb a few stairs. When you get back,” says Mom, “we can go to dinner.”

  Dean comes by to escort me to the emergency stairwell. I walk confidently beside him, without a walker or cane. “This is going to be a lot harder than you think it should be,” he cautions. I listen, but ever since Thanksgiving I’ve been very mobile—walking farther every day. I’m not nervous about a few stairs.

  Lifting my foot at the base of the stairwell, I feel the weight of my shoes on my calves. I press my left foot down onto the first step, trying to lift my right one up to meet it, and beads of perspiration flick off my chin onto the railing. My face is red with heat. I feel condensation collect on my back, my chest, and in my armpits. Finally, I pull my second leg onto the step. My bones feel like gelatin and my knees nearly buckle under the weight of the rest of my body. I start on the next step, but Dean stops me—“I think that’s enough for today.” He helps me down the steps and I collapse into a wheelchair in the hall. My body is so drained of energy that I feel like my soul is on the outside, looking back at myself—just like when I decompensated with Richard in ReSCU. I had hoped I’d never feel that way again.

  Maybe I’m not ready to go out. There are no nurses on call in a restaurant. No techs or doctors. I want to get out of this hospital so badly, but right now I hardly have the energy to think, let alone breathe on my own. A terrible thought crosses my mind . . . Maybe I’m not ready to go home.

  But this is the first hall pass I’ve really received here and I’d be the most ungrateful patient in this hospital if I didn’t use it. I put away my misgivings for later. “Where should we go?” I ask.

  Mom and Katrina exchange concerned glances. We’ve come so far but so many things could still go wrong. Swine flu is blanketing the country and the airwaves. Even a common cold could kill me. But the doctor did just tell us to go out. So, reluctantly, they help me into my wheelchair. I put on a mask and we’re off.

  We wheel our way through the halls toward the restaurant—part of the hotel attached to the clinic via a skyway. Mom and Katrina banter back and forth while I sit in my chair feeling like a small child. There are so many people! I doubt nudity could make me feel any more exposed than I do. Each time we pass a full hospital room or lobby, I hold my breath. Finally, we walk through the dimly lit restaurant’s glass-paneled doors. Dark wood and silver chairs are packed with businessmen, socialites, and fashionable young people. But the din of dinner conversations quiets as Mom rolls me through to our table. I feel every eye focused on our little delegation, and—for once in my life—I don’t like the attention.

  Mom parks my chair next to the booth. Auntie Katrina questions in a low voice, “How is she going to sit down?”

  I just want to get this over with. I push myself up in my chair and pivot to sit down in the booth. But as I do, I step on my loose shoelace and tumble to the ground. Real or imagined, I feel a collective intake of breath as the entire restaurant gasps at the scene I’ve created.

  “Charity! Baby, what are you doing? Are you OK!” Mom cries as she and Katrina help me up and into the booth. Though I’d smacked my arm hard on the armrest of the wheelchair, I nod my head yes.

  This is not as fun and freeing as I had hoped it would be. As the minutes pass, I feel increasingly unwell until finally, I look up at Mom pleadingly.

  “Do you want to go back to your room, Chary?”

  I nod yes.

  She gets the check and helps me back into my chair. We leave the restaurant, and the eyes that saw us in follow us back out. This time, I don’t feel well enough to care. Something is wrong. I feel awful. And this time I know it’s not just nerves.

  We make it back to the room and with help I get back into bed.

  A nurse attaches me to an apparatus that hisses freezing-cold humidified oxygen down the hole in my neck from the tracheotomy. Supposedly, it’s an intermediate stage of coming off the vent, but to me it feels like a form of torture.

  I ask for a blessing.

  Mormonism has a rich tradition of blessing the sick, the downtrodden, and those in need of direction. Some blessings are for healing, others are for comfort, clarity, and guidance. Priesthood blessings are an access point for divine wisdom and understanding—like a prayer dictated through the soul instead of dictated by one’s own perceived needs.

  It’s late at night, but Mom calls the leader of the local Mormon congregation, Bishop Todd Albrecht. Todd has become something of our own personal saint—taking time from his family and his job (being a Mormon bishop is not a paid engagement) to foretell the miracles and challenges I’ve met during my coma and since. Within the hour, he’s there with another young man from the congregation. They anoint me with a few drops of oil and place their hands atop my head.

  “Charity Sunshine Tillemann-Dick,” they begin, opening the blessing in the name of Jesus. Frequently, blessings carry peaceful, calming messages. This one is different. It states that I’ll regain my singing voice and return home. Then it continues to caution me and my mother to hold our ground in medical decision-making and to not be afraid to demand help when we need it. It warns of imminent challenges. When he’s done, I feel no difference.

  The priesthood brothers leave and I stay in my seat, hoping that sitting up might ease my breathing on this awful new device. Mom keeps calling the nurses, asking if there’s any way they can make me more comfortable. One after another replies no.

&
nbsp; “Mom . . . Mom!” I call. My oxygenation is dropping faster than the monitor can keep up with.

  “I need a nurse,” Mom shouts, but there’s no response. “I need the doctor immediately!!!” She’s screaming now. Just as she does, every alarm in my room sounds.

  “Hey, baby,” says a voice to my left. It’s Yoni.

  Instead of sleek cream walls, I’m surrounded by gray curtains again. “Where am I?” I say, but no sound comes out. I look down to see a vent tube trailing out of my neck. I’m mute.

  “You’re in the NICU—it was the only place they could fit you in.”

  My mind is racing—What happened? Why am I on the vent? In the neurological ICU?! “Where’s Mom?”

  “Dr. Avery is helping her organize a bed for you in the right ICU. She’ll be back soon.”

  Yoni and I sit in concerned silence until Mom returns.

  “Why am I here!?” I mouth to Mom.

  “You had what they call a major decompensation, sweetheart. The nurse who ran into the room bagged you for almost two hours—he was drenched in sweat by the end of it, but he saved your life.”

  “Well,” Katrina says, exchanging a knowing glance with Mom, “I’m glad things ended up OK. But I don’t think they’ll be discharging you this weekend after all. I’m afraid I have to run and catch my plane.”

  She and Mom walk out together. It’s the first time in a long while I’ve seen Mom with someone who knows her almost like Dad did. I’m overwhelmed that she has to go through this without him; that I have to go through this without him. As soon as the curtains of my room close, tears begin to well. How on earth am I back where I started? I see the same cycle playing out again: I rotate from unit to unit, and then some unfortunate mishap indefinitely prolongs my stay. Yoni pulls up his chair.

  “Chary, baby, what’s the problem?” he asks, taking my hand.

  “I want to go home!” I mouth. “I want to get married and I want to sing. I want to live my life. I don’t want to be here anymore and I want to be off of this machine!”