Ah! bello a me ritorna
Ah! Return to me beautiful
Del raggio tuo sereno;
With your serene ray;
E vita nel tuo seno,
I’ll have life, sky
E patria e cielo avrò.
And homeland in your heart.
Ah, riedi ancora qual eri allora,
Ah, return again as you were then,
Quando il cor ti diedi allora,
When I gave you my heart then,
Ah, riedi a me.
Ah, come back to me.
—VINCENZO BELLINI, NORMA
Dear Heavenly Father. I love You very much. I really do. I know You’ve already saved me from death a few times for which I am very grateful. While I’m sure there are serious miracles going down, this is not easy. And let’s be honest—my name is Charity—not Patience. If I wasn’t such a big Jesus fan girl, there’s no chance I’d be such a good sport. But really, Heavenly Father, can You please do something? Mom and the kids have been through enough of this. Not to mention me. By the way, I still don’t have a real hospital room. In Jesus’ name, amen.
For days, my nurses, doctors, and techs have told me a room in the respiratory unit will open up any hour. From where I’m lying, ReSCU looks dreamy, and I’m eager to escape to this mystical unit. Practically everyone on my medical team in the ICU has been amazing: attentive, kind, responsive. But I’m lonely. Even in one of the best hospitals in the world, there’s no avoiding the pain and confinement intrinsic to illness. Sometimes, I feel all but invisible. I get it. My friends and family are busy people. Time is scarce. But understanding that doesn’t make it easier. Especially when no one can understand me. Does anyone other than Mom even care that I’m here? When my mind is left idle, the questions gnaw at me. I’ve had serious medical issues before, but I’ve never felt imprisoned by my body like this.
Late one evening, Rodney and Raven come into my room. I grin expectantly—whenever they turn up, things get better. Today, they don’t disappoint. “Are you ready to move to a real room, Miss Charity?” Rodney asks.
YES! Yes! A thousand times yes! I can’t actually say it, but they get the idea.
Mom gathers together her nest at the end of the bed while Nick puts a surgical mask over my nose and mouth. Then we’re moving! Patient, nurse, tech, Mom, equipment; we all promenade down the hall together, a veritable microcosm of hospital life. This is the first time I’ve left the ICU in fifty days. My bed transforms into a magic carpet as cool air brushes past my cheeks. Without my glasses, the hospital’s sleek, modern aesthetic softens into something almost whimsical. White and gray swaths flow past me like clouds, punctuated by the colorful pops of passing scrubs—indigo for nurses, viridian for techs, scarlet for phlebotomists. It’s beautiful.
As we wind through the labyrinth of halls, I forget about the mask covering the lower half of my face and smile at every person we pass. Maybe it’s my imagination—after all, I can’t see very well—but they seem to smile back. Right now, anything feels possible.
We reach the ReSCU ward and I can’t wait! I beam expectantly as Nick swings open the door to my new room. Then I stop smiling.
Simultaneously dim and fluorescent, the space is about the size of a midsized U-Haul; after we jam my bed, the respirator, two IV trees, and a chair into place, it’s packed like one too. Rodney, Raven, and the team say goodbye and shut the door behind them, leaving claustrophobic silence in their place. Somehow, this room is even less comfortable—and more isolating—than the ICU.
Without a word, Mom opens a box at the foot of my bed and pulls out a handful of colorful papers. I squint—they’re cards. Roll of tape in hand, Mom hangs a small print of Warhol’s Campbell’s soup can on the wall, “from Darrin and MaryJoy,” she clarifies. Next to that she hangs a tiny Titian from our neighbor Katie in Denver. Then, a polar bear drinking cola and a photograph of a deep purple iris taken by Auntie Margot. A cartoon dog, a child’s drawing. They’re heartwarming, but I wonder if they might look less lonely on the windowsill . . . . At least there’s a window? Mom turns to me and smiles. I smile back, unsuccessfully trying to ward off advancing melancholy.
Then Mom returns to the box and pulls out a second handful of cards. And they keep coming. More cards, then more boxes. There are old pictures and proverbs and Far Side cartoons. Glitter rainbows and baby animals. One card sings “I Will Survive” every time it flaps open. Within an hour, Mom has effectively wallpapered my room with greetings from family, friends, friends of friends, fans, well-wishers—each one, a new testament of love. Once the wall is filled, she sets out picture frames from my sisters on the windowsill and by the sink. Recently, I’ve felt alone—even abandoned. But the kindness pouring off every surface around me crowds out anything less than joy. This is the most beautiful hospital room I have ever seen.
There’s a quick knock, then a new nurse swings open the door. “I’m here for your swallow test.”
Finally! The nurse removes my respirator and places a flat cap onto the tube protruding from my trachea. “Say ‘eeeeee,’ ” she instructs.
I wheeze air out of my throat, but no “eeeeee” follows. The blood drains from my face as, over and over again, I try to make a sound. Any sound. A minute passes, then two. But there’s nothing.
“Sometimes these things just don’t work out,” the nurse grimaces as she pats my leg.
No. Please, God, no. I pray, I need my voice. Tears of desperation start down my cheeks. I shove air through my vocal cords as the nurse picks up the tube from the respirator. Just as she’s about to uncap my trachea, a sound whispers through my lips; almost lost amid breath, a faint “eeeeee” wisps out. I try again, just to be sure. It’s unmistakable this time. “Eeeeee.” I say it again and again and again, tears streaming down my face, elated to hear my own voice after months of silence. Each time, the sound gets stronger. My vocal cords work.
Wiping a tear from her eye, the nurse puts down the respirator tube. “All right then,” she says, both of us collecting ourselves. “Now for the swallow test.”
The nurse pulls out a cup of bright green pudding. When I balk at the color, she elaborates—“It’s so we can tell whether you’ve aspirated any into your lungs.” She lowers a spoonful into my mouth. It’s disgusting, but I gulp it down anyway. Then she uncaps my throat and feeds a suction tube into my lungs. It comes up clean.
“Looks like you’re good to go!”
With that, I’m cleared for food. Well, soft food. A smorgasbord of dietary supplements is laid before me—every flavor of Ensure and Carnation Instant Breakfast. The variety is impressive, but totally unappetizing. I don’t want to eat (or rather, drink) any of this.
What I really want is a salad, but that trends more “crunchy” than “soft.” What can I eat that isn’t flesh-toned liquefied nutrition but also won’t make me aspirate? A bean burrito . . . Not just any bean burrito, though—Taco Bell! Shiloh, visiting for the weekend and always game for a good-food adventure, arrives later that evening with an entire bag of them. Oozy, cheesy, salty, semisolid—this is my heaven on earth.
Now that I’m only ninety pounds, you might think I could afford to eat quite a few burritos. But my massive weight loss comes with risks; soon, my potassium soars from the beans, and I have to retreat to Carnation Instant Breakfasts. Sometimes, I feel like not dying is the only “battle” I’ve actually won during this recovery. I’m already facing weaning from the ventilator, regaining basic motor skills, talking, walking, recovering from the wounds on my back, front, and head. Now it doesn’t even look like gaining weight is going to come easily. If only I’d had this problem during my pageant days . . .
Other challenges notwithstanding, my primary purpose in ReSCU is to wean off the ventilator. As the vent fills and empties my lungs, it disables me from speaking, eating comfortably, and regaining my core strength—the kind I need to breathe, walk, and live in general. Some patients are here for days, some weeks, others months. Everybody hope
s my stay will be short. As for me, I’m happy with my progress in getting off the vent—it’s set lower and lower every day—but then what? Doctors, nurses, techs, Mom—they do everything for me here. I miss my independence.
Russ, my respiratory therapist, has decided today’s The Day. I’m going to breathe by myself, totally unassisted by the ventilator. Russ slips an oxygen cannula over my head and unhooks my ventilator. Then he presses a flat cap onto the tube at the base of my throat.
Inhale. Exhale. I’m breathing!
After a few minutes, I mouth a question—“Can I talk?” Shocked and delighted by the raspy croak that exits my mouth, the question answers itself. I can talk! Soon, they can’t shut me up.
“Mommy,” I say in a gleeful grumble, “I love you!”
Mom kisses my forehead, covering it in tears. “And I love you!”
I ask for a phone. We call Mimo. Kimber. Tomicah. I leave a message on Liberty’s voicemail. My vocal fry takes center stage as we talk to grandmas, siblings, aunts, and uncles. I sound nothing like myself, but I’m so happy to be speaking that I hardly care. After six hours, Russ reconnects the vent, finally silencing me again. I promptly fall asleep, exhausted.
I begin to breathe on my own for a few hours more each day. One morning, I hear the entire floor break out in applause. I ask my nurse what’s going on.
“It’s Bill—your next-door neighbor—he’s walking!” she exclaims. “You won’t be far behind.”
“I want to be home by Thanksgiving,” I declare as a new physician’s assistant gives me a checkup.
Mom gasps audibly. “Charity, that’s only two weeks away. Be realistic.”
“If you keep up with the schedule you’re on right now,” interjects the PA, “I think that is realistic. Looking through your charts, you’re making remarkably rapid progress.” As he finishes up his evaluation, I’m beaming. Mom is not.
Over the past five years, Mom has done everything in her power to protect me from my disease. She’s been there for every procedure. She’s conducted endless negotiations with our insurance company and hospital after hospital after hospital, allowing the central conflict of my adult life to play out between my emerging opera career and my health—not my health and my insurance company. During the past two months, our lives have been lived in parallel. We spend the majority of our waking and sleeping moments side by side. But what Mom will never understand is that, no matter how tirelessly she supports me, I still must endure the most terrible aspects of this disease alone. I’m the one who has to be cut, stuck, and poked. I’m the one who begins each week unsure I’ll live into the next. Mom thinks about—even obsesses over—my disease. But this disease is a physical part of me.
I know I wouldn’t be alive without Mom on a host of different levels. But now that I can communicate, I want to start taking care of myself again. It’s been so long since I’ve been able to communicate my needs and decide for myself—I’m desperate to start. The problem is, Mom expects to decide for me too, and, increasingly, our ideas of what my care should look like differ.
Following the past week’s routine, I wake up and Russ takes me off the ventilator. But today, it feels like I’m hoisting a forty-pound weight off my chest every time I pull air into my lungs. After breathing unassisted for eleven hours yesterday, today I can barely go five hours before getting back on the vent. The following day, it’s even fewer. The nurse runs to place me back on the ventilator when my oxygenation dips so much it triggers an alarm.
It gets worse.
“Charity, you need more pain medication,” Mom pronounces with certainty. At this point, I can no longer speak—it takes too much energy to force sound out of my vocal cords—but I shake my head no. Pain isn’t my main complaint. Still, Mom calls the nurse. “Charity is in a great deal of pain,” she says. “She needs more meds. Right, Charity?”
I shake my head no again.
“She’s still not totally with it,” whispers Mom. (She’s been unsure of my mental fitness ever since I woke up from my coma—a fact I find simultaneously offensive and amusing.) “I’d give her a bit more fentanyl.”
I use whatever strength I have to, once more, shake my head no.
“Can you excuse us?” Mom asks the nurse. Increasingly uncomfortable between my mother and me, she gratefully bows out and shuts the door behind her. “How dare you counter me in public,” Mom turns to scold me. “I have been here, day in and day out—a slave to your care. Do not contradict me.”
“I don’t want more medication!” I mouth. “I want less. The meds make me tired. And I don’t want to get addicted to anything.”
“Charity,” says Mom, rolling her eyes. “People do not get addicted to pain medication recovering from surgical wounds. Pain medication exists for people like you!”
She’s right. But still, I don’t like the meds. They alter the way I experience the world: from the taste of food to the sound of voices to the way I process information. Life is my drug of choice—its side effects are why I love it.
The nurses have begun to find blood when they suction my lungs. While I’m sure I have pneumonia—it would explain the shortness of breath and the bleeding—my doctors and Mom insist that isn’t the issue. To keep the peace, I agree to additional pain medication.
When my body absorbs the fentanyl, my world is reduced to bare sensation: heat, cold, light, darkness. Words recess into ambient noise; people flatten into two dimensions. I hate it. When it finally wears off, I’m left with a throbbing migraine and nausea—the kind meds can’t fix.
The mid-November darkness settles early in the afternoon. As my window dims, a tall man with a chocolate complexion peeks through the door. “Charity”—his rich baritone voice fills my small room—“I’m one of the chaplains here. I’ve heard you’ve been having a hard time. Would you mind if I sang a song for you?”
I smile and nod my head. I’m just getting over a Fent headache and I haven’t heard anyone really sing in months. I close my eyes and feel the air in the small room move as he inhales deeply. Swells of sound pulse over me as the chaplain belts the chorus of “Amazing Grace” with a rich, mature tone. His melody is a salve for my aching body. But its lyrics sting. Listening to them, I can’t help but dwell on the grace I’ve received this year: from my donor, Mom, doctors, family, friends, and God. But no matter how hard I work, I come up short. I know grace has already saved my life; that grace will get me out of this hospital and, ultimately, lead me home. But all of this grace is frustrating.
I’m a glutton for miracles. But while other people get miracles like dream jobs, babies, debuts, and houses, my miracle is not being dead. Not dying has significant benefits. But before I got sick, my hard work was what people recognized and appreciated, not some visible or invisible hand of benevolence. Personally, I’ve always appreciated the human and heavenly hands at work in my life—trying to show my appreciation in the way I live and work and strive for worthy goals. And then I got sick.
Now, it’s like that one Christmas when Santa obviously didn’t get my letter. I have to be grateful for gifts I never asked for in the first place. Someone else has to lift my bags and hail my cabs. I need special food and perpetual hand sanitizer. I’m in a place of unending gratitude, and it can get exhausting. Some days, I’m not grateful that my sister carries in the groceries; I’m not grateful that my siblings are alone in Denver while Mom sleeps in my hospital room. I’m not grateful for the tubes coming out of my neck, my arms, and my chest—even though they’re saving my life. I wish I had my own lungs. I wish I was back in Europe singing. I wish Mom was home in Denver sleeping in her own bed. I wish I caused less hardship and sorrow. I wish that, instead of giving me so many little miracles, God would have just given me the one miracle I most wanted. Wouldn’t it have been simpler to just cure my PH? Or not give it to me in the first place! Don’t get me wrong. I love miracles. And I love Jesus. I need grace every day. But in my life, the things other people get to claim as their own achievements turn in
to my miracles. It’s like everything I do is accompanied by heavenly jazz hands.
As the chaplain sings the last verse, the message swirls through me in a vortex of frustrated, confused, resentful gratitude:
When we’ve been there ten thousand years,
Bright shining as the sun,
There’s no less days to sing God’s praise
Than when we’ve first begun.
I stifle my tears long enough to thank him before he leaves. Then I let loose. Does God not love me enough, or does He love me too much? Whatever it is, all of this grace is seriously messing with my head, my soul, and, most of all, my body.
Relearning how to breathe puts the body under tremendous stress. Retraining muscles, healing wounds and bones, regrowing skin—these all consume huge amounts of physical energy. Caregivers—doctors, nurses, therapists—need to push patients as far as they can go without leaving their body too weak to ward off infection. When the immune system is in perfect condition, it’s a complicated dance. But when the immune system is suppressed, missteps are inevitable. Oftentimes, medicine is reactionary by necessity. With a transplant, you can only hope to be prepared for the inevitable mistakes.
Later that evening, the PA who evaluated me the week before drops back in to grab a piece of candy. He hangs back though, concerned by my drastically weakened condition.
“They’re not giving her enough pain medication,” Mom explains to him.
“Mmmm, I don’t think so. She should be off of the ventilator by now, regardless of pain.” As he’s talking, a nurse comes in to suction the liquid from my lungs. He watches as thick threads of blood make their way up the tube.
“Hold on.” He stops. “Blood? That wasn’t there last week.”
I nod in agreement, grateful that someone other than me finally notices. Mom looks at him quizzically.
“One of two things is going on,” he continues. “Either, there were some large clots of blood that were jostled and a flap of tissue is growing around the trach tube in her throat, making it harder to breathe . . .”
The Encore Page 11