ACT II, SCENE 1:
Amina
Lost in a dream, Amina wanders sleepwalking aimlessly until love wakes her and she is restored to a happy state of wonder.
Ah, non giunge uman pensiero
O, inconceivable human thought
al contento ond’io son piena:
a wave of contentment I am full:
a miei sensi io credo appena;
In my feelings I can hardly believe
tu m’affida o mio tesor.
you assure me, O my treasure.
Ah, mi abbraccia, e sempre insieme,
O, embrace me, and always together,
sempre uniti in una speme,
always united in a single hope,
della terra, in cui viviamo
of the world, we live in
ci formiamo un ciel d’amor.
we will make a heaven of love.
—VINCENZO BELLINI, LA SONNAMBULA
For five weeks, I’ve been lost amid a drug-induced dream of Homeric proportions. Finally, the curtains close on the oneiric epic and the lights of my subconscious dim to black. Gradually, a blank cosmic weightlessness turns to sleep. It’s time for me to wake up.
Quietly, my body—back, arms, legs, hands, fingers, toes, neck, head—reenters my state of awareness. Light streams through lashes as my eyelids flicker open. Or wait . . . am I still out? Three backlit figures stand over me. Are they angels? Did I die in the end—after all that? Slowly, my eyes adjust to the room’s ambient fluorescent glow and I recognize the smallest of the blurry outlines. A smile spreads from one cheek to the other—it’s Mom. She’s here! Auntie Margot is right beside her. I’m awake! I’m alive.
“Charity,” Mom says, beaming, “these are the nurses who helped save your life.”
Through blissful tears, I cry out, “Thank you!”
Only there is no sound.
Where is my voice?
Inha— I can’t inhale. I try to take a deep drag, but no air gets past the yawn of my open mouth into my throat. Gulping down, I notice that my mouth is bone dry and I can’t seem to swallow. Wide-eyed and confused, I look toward Mom.
“Everything’s all right, sweetheart,” Mom reassures me. “Margot and I have been here by your side, twenty-four hours a day. Everything is going to be OK now. Everything is going to be OK. Just smile and say ‘thank you.’ ”
There are no two people I trust more to facilitate my care. Margot is my dad’s older sister and one of my dearest relatives. Mom and Margot have been two of my most devoted friends and advocates since my medical ordeal began. I’m alive. I tell myself. I’m alive. That’s what’s important right now. Using gratitude to suppress my terror, I smile wide. Then I mouth, “Thank you so much!”
A parade of ICU nurses and medical technicians drop by as Mom and Margot squeeze my hands. I feel like Rip Van Winkle after his hundred-year nap. All of these people know me, my family, my story and I have no idea what’s going on.
“There are so many people who have been working to keep you alive, Chary. You’ve been on such an adventure!” Mom smiles with her Pollyanna optimism.
“Yoni?” I mouth, hoping he might be in the waiting room.
“He’s in Chicago,” Margot explains, “but he’s been here almost every weekend and he’ll be back soon.”
Anticipating my next question, Mom adds, “Dr. Budev isn’t on service, but she’s been in and out to check on you.”
After an afternoon of silent meet and greets, I find myself slowly drifting off. I wonder how long I’ll stay asleep this time?
I jolt awake. My pump. Where is my pump? I’ll die without my pump!
It’s easy to lose track of time in the ICU. Robotic tones and bereaved sobs combine in a horrific, minimalist score. Auditory and visual patterns are on repeat. Artificial lights drone overhead 24/7, beeps and buzzers sound incessantly, and the caregivers’ workdays never end—making it nearly impossible for me to know whether hours, days, or weeks have elapsed since I first woke up in this bed. Other than the dream I had during my coma, the past six weeks are a blur. I forget the call about the lungs. I forget the flight to the clinic. I forget asking Dr. McCurry to save my voice. But of all the things I don’t remember, one is most pressing—I don’t know I’ve had a lung transplant.
Shaking my head back and forth in hopes of catching someone’s attention, I try to tell them what I know must be the problem—the reason I’m in the hospital.
“My pump!!!” I mouth silently toward Mom, “My pump is gone!!!”
Frantically nodding my head (I can’t seem to move anything else on my body), I gesture down toward my waist where the pump should be attached, hoping someone will understand. Finally, Mom notices my flailing and sits down next to me.
“What’s wrong, Chary?”
“My pump is gone!! It’s why I’m sick!!” I mouth desperately.
“Slowly,” Mom instructs.
“MY—”
“My,” she repeats.
“PUMP”
“Bump? . . . Pup?” she pauses, squinting. Suddenly, her eyes light up. “Your pump! No, Chary. No pump.”
I adamantly nod my head. Yes, pump!
“You don’t need Flolan anymore, sweetheart. You’ve had a lung transplant.”
“. . . What?” I mouth, at a loss.
“A lung transplant, Chary. It was a very hard surgery and you were in a coma for five weeks.” She takes my hand in hers. “You were so sick, Chary. Too sick, really.” With that, Mom recounts the highlight reel of my surgery: the valve tightening, the transfusions, the flatlines. With every detail, my eyes grow wider. Then she goes into the aftermath—
“They kept your chest open for two weeks because you were so skinny that the lungs didn’t fit inside of you! Then, once they closed you up, your kidneys stopped working and all we could do was pray to see pee in your catheter’s tube . . . . Oh! And there are those awful sores we found—when I first saw them I thought they were big black roaches crawling all over your back. That’s why the hospital got you this special bed. It blows silicon around inside to improve your circulation. They told me you might feel like you’re lying on hot sand, which could be uncomfortable. But you haven’t had a single new sore since they brought it in, so just try to pretend you’re at the beach. OK, sweetheart?”
I look around me. I’m not sure even my imagination is up to that task. Gray curtains separate my 8 x 10 corner of the loud, crowded ICU from my neighbors’. My bed is pushed against the wall, with two overburdened IV poles flanking it like a morbid DIY headboard. On the other end lays Mom’s main residence for the past five weeks—a cream-colored easy chair a nurse has wheeled in from the waiting room surrounded with a nest of papers and blankets. On the counter by the sink, there’s a basket filled with something shiny. I squint—they’re candies for every doctor, nurse, and technician who comes by my room (perhaps provided in hopes that they’ll come by my room more often).
Besides Mom, there are the machines and monitors. I follow their snaking cords back to my own body. Beneath my thin cotton gown, four blue tubes are still draining excess fluids from my chest; a central line in my neck connects to a half-dozen IVs, all of which administer medications continuously; an arterial line in my wrist is used to draw regular blood samples; a large tube in my neck connects to a respirator a few feet away; a feeding tube hangs like a bullring from my nose. Are there two more tubes by my legs? I can’t be sure. Actually, I’m glad this isn’t the beach, I think to myself. I’m not exactly in swimsuit shape right now.
“You’re doing so beautifully, Chary sweetheart,” says Mom, contradicting my every instinct and observation. She beams down at me and squeezes my hand. I really want to believe her, but . . .
No. I’m going to believe her. I’m alive. I’m with Mom. I don’t have PH anymore! As far as I’m concerned right now, that means I’m doing beautifully. I smile up at Mom as she continues to fill me in on what happened while I was away.
Only once the de
luge of information begins to quell do I consider my surgery’s most fraught implication. My brow furrows in apprehension. “Someone died?” I mouth to Mom.
Pausing for a moment, Mom squeezes my hand again—harder this time. “Yes,” she confirms. “They aren’t allowed to give us any details about your donor, but somebody did die. If they hadn’t, you never would have gotten your transplant. We’re all so grateful to them, Chary.”
It’s like the wind has been knocked out of my new lungs. Somewhere, as my family was celebrating my second chance at life, another family was aching over the loss that had given me that chance. Was I benefiting from that family’s sorrow—somehow complicit in their tragedy? Mom and a nurse try to comfort me, but to no avail. My tears continue into the next shift of nurses and the one after that. Mom has finally fallen asleep in the recliner when Nick, a handsome blond nurse I met right after waking up, steps into the room.
“What’s wrong?” he asks, crouching next to my bed.
“Do you know anything about my donor?” I mouth slowly, so he can understand. “Where was she from?”
“Actually, I was on the team that went to get your lungs.” My eyes light up. “Your donor was from Texas,” he says.
I know he’s breaking protocol, but I have to know more.
“How old was she?”
“A year older than you.”
“How did she . . . ?”
“A car crash.” He pauses. “I hope you can meet the family one day. They would love you.”
As he speaks, my guilt transforms into something lighter. All of a sudden, I feel a kinship with this woman. (I think of her as a woman, though Nick hasn’t actually shared her gender.) I appreciate that she’s very much a part of me now. My new life has been born of not one, but two atonements: the first, Christ’s, was divine. The second, mortal—offered by a kind stranger’s final act of compassion. My donor may have had other possessions, but she’s entrusted me with her lungs and, consequently, my life. In this moment, sewn together, silent, and atrophied, I make her a promise: I’m not just going to recover, I’m going to really live.
Why haven’t I eaten yet? It’s been at least a day—maybe two—since I woke up, but somehow I haven’t seen a crumb, much less eaten one. My doctors had promised me that if I got a transplant, I could eat whatever I want. No more salt restrictions or nausea. Feeding tube mush wasn’t exactly what I had envisioned. I’m not hungry, exactly, but I’d give an arm for a La Casita tamale. (It’s not like my arms are much good for anything else right now. Might as well bargain them away for Mexican food.)
“What do you want, sweetie?” asks my mother.
“Food!” I mouth, but it’s impossible for her to understand such a formless little word.
After taking a moment to consider, Mom’s sapphire eyes brighten—“Blink twice for no, once for yes,” she instructs. As she cycles through a list of questions I blink twice, but my eyelids move so slowly there’s no way of knowing the blinks come as a pair. When she asks if I’m hungry I blink once, but this time it’s followed by an involuntary second blink—making it look like “no.” Mom continues, and I have to work so hard to control my blinking that I forget her original question entirely. Moving to Plan B, Mom finds a whiteboard and marker. But when she puts the marker into my hand, it slips from my atrophied fingers. Next, Mom produces laminated pages with pictures of different problems, letters, and numbers. But it’s no use. I can’t even point. Later, I’ll learn fine motor skills are one of the last things patients with general muscular atrophy regain. For now though, I just know the aids don’t help. Mom puts them away, fixes her eyes on me, and focuses her mother’s intuition.
“You’re hungry?” Mom’s face falls. “Sweetie, you’re not allowed to have food yet. You need to have a chew-and-swallow test first.”
Patients on respirators are unable to cough, so they seriously risk pneumonia if they aspirate anything into their lungs. A supervised test to prove swallowing capacity might seem prudent to most people, but I haven’t eaten anything in over a month and the Food Network is playing in my room nonstop. I don’t want to take a test. I want to eat. I begin to panic. What if I die before I get to take the test?! I could totally die before I get to take the test. Then I’ll never eat anything ever again . . . . I stop myself and try to remain calm. So I can’t eat. What can I do?
“Drink?” I mouth hopefully.
“I’m sorry, sweetheart,” she answers, kissing my forehead. “I can’t give it to you.”
After learning about my donor, this is the second hardest thing I’ve heard since waking up. Tears stream down the side of my face, filling my ears with a drip of self-made saline. I’ll take the tubes, smile through the speechlessness, and even be good humored about the extreme pain. But no food?
“Oh, Chary. Don’t cry,” Mom implores. But I can’t stop. I don’t want to stop. I’m exhausted. My chest feels like it’s about to explode. I’m hot. Uncomfortable. Frustrated. I want to be happy for Mom—to put on a good face for the nurses and be a model patient—but this is simply too much to bear.
Finally, Mom caves—“I can wet this sponge and I can put it in your mouth?”
Really? If I had known my future meals would be limited to a “wet sponge,” I would’ve eaten another burrito at the hospital in Baltimore. Still, I guess it’s better than nothing. I nod unenthusiastically. Mom moistens a sponge with hospital ice and places it in my mouth. It’s a slight improvement over the taste of dry flesh and muscle. I flash Mom a faint smile of gratitude. Then, her eye glimmers.
“Chary,” she says in a hushed voice, “would you like me to wet the sponge with Diet Sprite?” My eyes spread anime-wide in happy expectation—I have never wanted anything more. “Yes?” she confirms. “OK. I’ll go get it.”
I can barely contain myself. Somehow, the difference between a small sponge soaked with water and a small sponge soaked with Diet Sprite is everything to me right now. Waiting for Mom to come back from the vending machine feels like waiting for Santa on Christmas Eve. When she finally returns, she carefully closes the curtain and swears me to secrecy—“I’m really not supposed to do this. Don’t tell anyone.” A task easier done than said in my current state.
As she pours Sprite into the puce-colored cup, the fizz and pop of carbonation heralds the upcoming event. She lowers the damp sponge into my mouth and an explosive sparkle of lemon and lime erupts on my tongue. My mouth feels like an ad for vintage soda—the kind girls post on summer-themed Pinterest boards. I am joy incarnate.
Over the next days, my mind is consumed by thoughts of Diet Sprite. Its taste. Its temperature. How to get more of it. To a third-party observer, my obsession with this carbonated beverage would seem a mania born of boredom or even madness. But with all the pain and discomfort of my life within the ICU, Diet Sprite has become my reminder that there’s more to life than ventilators, arterial lines, and fluorescent lights. There are also nice things—things like cold lemon-lime soda. My life has always been about accessing and sharing whatever’s most wondrous and, in my current condition, Diet Sprite is pure liquid wonder. All I want is more. I fill my recumbent waking hours by plotting how to increase the number of covert “meals” Mom will allow me; they’re the sunrise moments of my days of late. Then a respiratory therapist comes in, interrupting my scheming.
“I’m Chelsea,” she says, a few errant curls escaped from her dark brown ponytail framing her face. She looks friendly and concerned, but there’s not an ounce of pity in her. “I’m here to help you breathe on your own. But first, I want you to sit in a chair.”
“I want to stand up,” I retort, silent and eager.
She smiles knowingly. “That’s great! But first, you have to sit in a chair.”
I’m always up for a challenge. After everything I’ve been through, sitting in a chair doesn’t exactly seem to qualify. “Let’s just do it now,” I mouth nonchalantly. It will be nice to be off my back—whatever the method.
Within a few minute
s, two muscular men in matching polos and khakis come into my room—Rodney and Raven, my lift team. Enlisting the help of Mom, my aunt Margot, Chelsea, and four other nurses, they orchestrate the treacherous transfer, untangling cords and repositioning IV trees to ensure I don’t get caught on anything during the trip.
“One . . . Two . . . Three . . . Lift!”
For the first time in weeks, a cool breeze rushes past the back of my neck and my braids tumble down behind me. Momentarily weightless. Then, with great care, the team sets my fragile frame down in a red seat next to my bed. “You sit so straight!” Upon hearing Mom’s praise, I square my withered shoulders just a little more.
Chelsea explains that sitting will help to rebuild my core muscles, which in turn supports my diaphragm and my new lungs as I learn to breathe on my own again. She only expects me to sit for half an hour or so today, but I know this is just an audition for real life. The sooner I succeed, the sooner I can go home.
So I sit the hardest I’ve ever sat. An hour passes. Then two. At first, the hustle and bustle of the ICU around me keeps me engaged, but somewhere in the third hour my bottom starts to ache. Around hour five, I’m sure my bones are about to grind through my skin at any moment. Mom places pillows underneath me and rocks the chair back and forth, but it does little to alleviate the pain. Still, I won’t lie down. Sweat beads down my face. I’ve been sitting still in an armchair for the past seven hours, and it’s the most strenuous workout I’ve ever done. As the evening news begins to play on the television, we finally call Rodney and Raven to move me back to bed. I fall asleep immediately, totally spent.
The next morning, I declare I’m going to stand up. Mom’s eyebrows raise, but she and my nurse Nick rally the necessary troops and support staff. Short story short, it doesn’t go as planned.
Afterward, Mom stands at the end of the bed, rubbing my feet like I’m a prizefighter recovering from a KO. “Next time, baby. Next time.”
The Encore Page 9