Mom is uncharacteristically quiet in the front seat. While I’m thrilled to be leaving the hospital, she’s not. On one level, I understand why: My limbs are scary spindly and my gait is insecure; I’m not eating enough; my entire body is covered in partially healed wounds. Mom is sure that I’m too vulnerable to leave and she’s furious at me for telling the doctors otherwise. But in my heart I know I’m ready. I have to be, because I couldn’t have stayed in that hospital a moment longer without going completely crazy. And now we’re here, on our way to Denver, no matter how angry it makes Mom.
The head of airport security meets us at the curb with a wheelchair and helps us navigate through the morass of holiday travelers. Everywhere we go, Mom loudly clarifies my fragile condition: to check-in agents, police, and TSA officers, flight attendants, restaurant employees, fellow travelers. I start to suspect she’s actively directing her attentions elsewhere—it seems she can hardly stand to look at me for more than a moment at a time. Finally seated on the plane, we sit beside each other in silence. Why isn’t she saying anything? I try to quell my unease by looking out the window.
We arrive at Denver International Airport. The vista that greets us upon landing is powdered-doughnut white—freshly dusted with dry Colorado snow. We make our way through the airport and exit the terminal. The door of an old red Range Rover swings open and out steps a lanky man wearing a plaid shirt and a cable-knit cap. Dad? For a moment, there’s a harsh dissonance between what I see and what I know. But I quickly realize my mistake. It’s Uncle Justin, Dad’s younger brother. I’d never noticed how similarly the two of them carry themselves—Justin’s height, his gait, his laugh, his voice, even his dry sense of humor. It’s uncanny.
The drive home feels a bit unfamiliar after being away so long. I’d been back to Denver almost two years earlier for the funeral, but that felt more like a bad dream than a homecoming. This time, it’s different.
I take a deep breath as we exit I-70 just past Federal Boulevard. The street is lined with honey locust trees guarding rows of eclectic little homes—modest ranch-style walk-ups, tiny Tudors, and bungalows. Then, you see it. Set atop a hill, its stately lawn spreading across most of the block, stands our Beaux Arts-style home. Neighborhood kids call it a mansion. A long brick walkway meanders toward a double-stairway leading up to three sets of French doors topped by massive, arched windows. We pull into a parking spot by the back door of the house, where terra-cotta topped porticoes tower over us and naked wisteria vines snake up around the second-story kitchen window.
The big white house in Denver is almost like another member of the family. My parents even gave her a name—Theopolis. Built in 1908 by the prolific Denver architect J. J. B. Benedict, the three-story stucco edifice has led a number of lives—serving as a farmhouse, a convent, and even a dentist’s office. Before my parents bought it, a childless divorcée who’d succumbed to dementia owned the house. The property had endured significant neglect—you could look straight down from the second story to the first through holes in their respective floors and ceilings—and it hadn’t been updated since a trend-heavy makeover in the late 1960s. But my parents weren’t easily intimidated.
When they found Theopolis, Mom and Dad had themselves, nine kids, and three dogs crammed into a three-bedroom Victorian a few blocks away. My parents were committed to staying in the neighborhood, but there weren’t many homes big enough for the entire brood. The old mansion was in complete disarray, but it was exactly the kind of space Mom and Dad had always imagined for us. Enough room. Lots of green space. Plenty of nooks and crannies. And all of the work needed—outside and in—would be ideal for keeping nearly a dozen growing kids occupied. We spent my adolescence tackling one massive renovation project after another, laboring to make the grand old house into a habitable home.
Growing up, Theopolis was always full—with children, animals, exchange students, guests zooming in and out and around without cease. Now, though, the driveway is still. Without the usual din of ambient chaos to fill up its empty spaces, the house seems massive.
Mom, Uncle Justin, and Zen ferry bags into the house. “We’ll be out to help you in a sec, sweetheart!” Mom calls out as the back door swings shut behind her. I don’t need help getting out of the car, I think to myself, half insulted, half aspirational. I can do this by myself. Heaving myself against the car door, I push it open and swing my legs around the side of the seat. As I’m getting onto my feet, though, I feel my shoes begin to slip on the icy driveway beneath me. To keep from crashing onto the ice, I twist my torso back toward the car, face-planting into the passenger-side seat. Still sliding, I reach out my hands to grip the console on the far side of the seat, all the while still trying to gain my footing. But it’s no use. I can’t get any traction. Still grasping onto the cup holders, I’m left to consider my predicament. I’m fine, or at least physically unharmed, but I can’t change positions without crashing to the ground. Mom is not going to be happy when she sees this. Hopefully, Justin finds me before she does.
“Charity!” I hear her mortified cry. “What have you done to yourself?! Zen! Justin! Hurry!”
Too late.
“I’m fine!” I mutter adamantly, my face still buried in the velour seat cushion. I hear someone running toward me. Before I know what’s happening, Zen hoists me over his shoulders like a sack of flour and carries me into the house. From my upended vantage point, I can only see the floor as it passes by. We go past the brown tile of the laundry room, up the cobalt-blue back steps, across the worn wood slats in the kitchen and the dining room’s elaborate Persian carpets, then back down the dark wood of the main staircase. Finally, Zen sets me down onto a large bed—
“Chary-bear, you’ve gotta promise me that you won’t get up without calling me for help, OK?” he censures. I nod yes, my face a little flushed from some mixture of gravity and embarrassment.
Looking around me, I see I’m in my great-grandmother’s old suite. It opens onto a half acre of frozen, unkempt grass and, out of the bank of windows lining the main room, I see my mom’s growing herd of white dogs roaming happily out back. The apartment is part of an addition I helped build as a living space for my great-grandmother Mamcsi the summer I turned fifteen. I dug holes for the foundation, poured cement, framed the exterior, laid down radiant heating lines, stripped paint. It was a true labor of love, a comfortable place for us to look after Mamcsi as she suffered from late-stage Alzheimer’s. I never imagined I’d be the one convalescing in it.
Everything about this place is large: the mountains, the dogs, the yard, the house, my room. I’ve become accustomed to the efficiencies of East Coast living, and my hospital accommodations were even more cramped than my small apartments. But my single space in this house is twice the size of my place in DC and big enough to host a dozen ICU nooks. I settle into it as Mom and the others go to check up on the status of our newly unabandoned house.
That evening, Mom’s anxiety escalates to hysteria. She storms around the house, slamming doors and shouting ominous curses at no one in particular. Finally, she stalks into my room.
“How could you do this to me?!” she howls. “How, when I’ve given you everything?! I brought you into this world, then I dragged you back into it when you were on the brink of death! All I wanted was to stay in the hospital for one more week! One week! But you just had to leave!”
“Mom,” I counter, almost excited to engage, “with all of the infections swirling around there, it was far more dangerous for me in the hospital than here at—”
“More dangerous?! You’re covered in open wounds, Charity! Who do you think has to care for those!? You have more medications than both of your great-grandmothers combined. I’m not a trained nurse, Charity—I don’t understand these things! But do you know who’s responsible if you go into septic shock now? If you stop breathing?! I am, Charity! I am!”
“Mom, I was going crazy!”
“Crazy is better than dead!!!” She turns on her heel and slams the d
oor behind her.
Nurse after nurse warned me that leaving the hospital was one of the hardest things for patients’ parents. But I didn’t expect it to be this bad. Later that night, my oldest sister, Dulcia, knocks on my door. She sits beside me and starts combing my hair.
“What Mom said earlier—she’s just lost so much in the past years. She’s scared of losing you too.”
I know Dulcia’s right, but that doesn’t make it much easier to bear.
“She’s been in the hospital a long time too, you know? She has almost as much to adjust to as you do. Just give her some time to cool off. You know she always does. Eventually.”
She shoots me a knowing smile. Mom and Dad had always subscribed to the proverbial “it takes a village” approach to raising children. And, as they did with so many other things, they put their own twist on it. They built and maintained an entire village right here in our crazy old house. Kids, foreign exchange students, guests, pets. There was always chaos, but, somehow, that chaos was accompanied by an uncanny equilibrium—like a gyroscope spinning wildly to maintain a steady center. Whenever someone was out of line, someone else could always balance out their craziness. Somehow, though its numbers have dwindled, the house still holds that same magic. Tonight, Dulcia is my village.
Despite everything, it’s good to be home.
Sitting in my room the next morning, I’m restless. It’s New Year’s Eve and the rest of the kids are out doing who knows what, so it’s just Mom and me in the house. I decide to use the opportunity to get a head start on my resolutions.
“I’ll be back in about an hour,” Mom calls down the stairs. “We need some bread for the fondue. You just stay put, sweetheart.”
Resolution #1: Be More Independent
Pushing myself up from the reclining armchair downstairs, I begin the long and perilous trek to the kitchen. I go to the door and I push down the cold brass handle. The door slowly swings open. Hand against the wall to guide me, I walk through the dark hallway. My foot bumps something furry and I look down nervously—it’s Nori, our Great Pyrenees. The gargantuan animal seems unbothered by the interruption. Edging my way around him, I reach the bottom of the staircase. Wrapping my arm around the banister, I observe the task confronting me. These aren’t the emergency stairs at the clinic—I much prefer the warm chestnut wood to the clinical gray plastic to which I’ve become accustomed—but, structurally, they aren’t much different. I summit the flight without incident. Steadying myself on the wall at the top, I head down the hallway to the kitchen.
Resolution #2: Be More Helpful
Upstairs, it doesn’t look like anyone has started preparations for tonight’s festivities—our traditional New Year’s Eve Fondue Extravaganza. I go to the fridge and find a Costco-sized wedge of Jarlsberg sitting inside. I squint at it, determined. I can’t do much, but I can do this. I manage to peel off the cheese’s tight plastic wrapping and then go to the cupboard to retrieve a rickety metal grater. I slide the enormous chunk of cheese up and down it until my arm begins to burn. Soon I have to rest, but after a few minutes I’m back at it. This is as pedestrian a task as exists, but it’s important to me. I’m contributing—giving instead of receiving for what seems like the first time in months. I know it’s only grated cheese, but at least it’s something. I’ve missed this feeling.
The back door jingles open as Mom arrives back home. “Hello?” she calls up the stairs.
Biceps aching, I respond lightly—“Hi, Mom!”
“Chary, what are you doing up here?” she asks as she climbs the stairs. Seeing the small mountain of creamy yellow cheese piled on the cutting board in front of me, she smiles and shakes her head. “Oh, sweetheart, you didn’t need to!”
Yes. I did.
Resolution #3: Gain Weight
That evening, the boys light a fire while Mom sets dozens of candles aglow. We eat bread and cheese until our bellies ache. Illegal fireworks whiz up from across the neighborhood, welcoming the New Year. As I admire them from the front steps, I’m overwhelmed. We’ve made it. I’m alive. I’m home. And, boy, am I full.
On New Year’s Day, we host Uncle Justin and his family for brunch, then lapse into idleness. Everyone has fallen asleep on the couches across the living room, except me. I figure I’ll go do my breathing exercises in my room. I make my way over to the stairs and start down confidently. But my foot slips out from underneath me on the fourth step and I fall, slamming my way down the staircase. Desperately, I try to grip the banister as it slides past me—all the while praying that my bones don’t shatter with each new impact. Finally I crumple to a stop on the bottom landing.
I stay there for a few minutes, trying to assess the damage to my body. Already, I feel a vicious soreness creeping into my muscles and can see that my arms and legs have been tie-dyed with deep purple, green, and blue bruises. But as I carefully squeeze each limb, I can tell that that’s the worst extent of the damage. Eager not to be found in this pile, I crawl down the hall to my room on all fours and pull myself into bed. Then I clasp my hands together in prayer:
Dear Heavenly Father, I’m grateful my bones didn’t break on the way down the stairs. I’m so grateful I don’t have to go back to the hospital right now . . . and I’m sorry. I’m sorry for my pride. I just want to be able to care for myself—to support myself. I realize that I’ve never done it all on my own, dear Heavenly Father. Please help me to admit what I can’t do and embrace everything I can. Help me to show gratitude to my family who have done so much for me and help me to make all of this up to them . . . one day. I say these things in Jesus’ name, Amen.
It doesn’t take long to settle into a routine. Once a week, a home nurse comes to take my blood to monitor my medication levels. Every three or so days, my physical therapist visits to show me new exercises and give me new goals—ride for this long on the stationary bike, climb that many stairs. Every morning, my alarm goes off at 8:00 a.m. and I take my first round of pills. Then Mom comes down to debride my wounds from the drainage tubes and the bedsores.
Debriding is an awful process, but essential to both prevent infection and reduce scarring as my many wounds heal. After scrubbing up to her elbows, Mom painstakingly picks off dying cells from the raw skin covering my back with tweezers and dresses my tube sites with ointment and antiseptic. It’s painful for me and stressful for her—I feel the tension in her grip as she picks and dabs with as much precision as she’s capable of. Both of us are glad when it’s over.
But other than the pain, there isn’t much to stem the monotony. Flu season is particularly virulent this year and, with my immune system being actively suppressed by transplant meds, my visitors are limited: family, nurses, and a few carefully screened childhood friends. I can’t walk far. I don’t like watching TV. It can get dreary.
Meanwhile, life outside of my room forges on. Now sixteen, seventeen, and nineteen, respectively, Glorianna, Mercina, and Shiloh have all continued the family tradition of early college attendance. When the semester starts up again the first week of January, they’re either in school or studying for it. Zen and I begin to spend more time together, just the two of us. While everyone else is in class, we study, cook, and watch movies together in my little apartment.
The weeks pass, and I get stronger. But with every improvement, a terrifying reality confronts me: I can do almost everything a regular person can by now. But can I still sing? The question haunts me and my progress, keeping me awake at night.
It’s a Tuesday morning and Mom has just finished wound care before going to run errands. I’m alone. I close the door to my apartment and Google the words to an old song I first heard in a musical called Nat King Cole and Me. As I scroll through the results I think back to the night I saw it—Mom had won tickets for the whole family years ago, quite soon after my diagnosis. Written and performed by Gregory Porter, the musical was his memoir, told through the songs of Nat King Cole. The stories he shared onstage were profoundly difficult and intensely personal, yet, as P
orter sang “Unforgettable,” “Star dust,” and “Mona Lisa,” I couldn’t keep empathetic tears from brimming in my eyes. I remember looking down the row during his rendition of “The Very Thought of You” to see my entire family, everyone from Dad to Zenith, sobbing alongside me. Through those hopeful, longing, melancholy tunes, we felt the thrill of ephemeral joys and the sweet sadness that settles into our hearts when they pass.
One of the songs from that night stuck with me longer than any of the others. Whenever my life got particularly bleak, I’d think back to “Smile”—written by Charlie Chaplin and performed most famously by Mr. Cole, then Mr. Porter. Recently, I’ve been listening to that song almost daily, its simple tune carrying a powerful message.
Inhale. Exhale. I start to sing:
Smile though your heart is aching
Smile even though it’s breaking . . .
I continue until the song is over. The sound barely resonates; breathy, small, and thin, it wouldn’t be heard over a piano, much less an orchestra. I gasp for breath every other word, messing up the meter of the song terribly. When I sing the final phrase, I’m breathless. It’s about as far as it could be from the big, bright, focused sound I know as my own. Still, it’s something. Sitting on my bed, I make myself a promise: in a year, I’ll have retrained my voice. That seems reasonable enough. One year to practice, perfect, and recalibrate my expectations for my career. By then, I’ll have made up for the time and skill I lost to my surgery. A year from now, I’ll stop playing catch-up and start moving forward again.
The next night, Mom comes down to my room. “I’ve gotten three calls telling me you’re on an advertisement for American Idol this week,” she says, her brow knit in concern. “I thought you told me you didn’t make it to the TV rounds?”
“I didn’t!” I insist as my stomach drops through the floor.
This can’t be good.
Two months before my transplant, I was in Chicago visiting Yoni. Waiting in the middle of an endless queue downtown, I was riddled with uncertainty. In front of me stood a doe-eyed teenage girl fiddling with the floral-embroidered guitar strap slung over her shoulder; behind me, a six-foot-four man decked out in full drag. I was auditioning for American Idol. How did I ever let Yoni talk me into this? During the ten months we’d been dating, he had tried to get me to audition for the show three different times, to no avail. It just wasn’t my kind of gig. But I had almost broken up with him over the phone a week before, and this audition was my ill-advised attempt at an apology As I stood in line, I felt sick—well, a different type of sick than usual. I knew my voice wasn’t the right fit for the show. I didn’t sing pop or rock or folk. I sang opera. But Yoni insisted that, with all the classically trained singers doing gangbusters over at America’s Got Talent, the producers would be salivating over me. I was not convinced.
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