“Or?” asks Mom.
“She has pneumonia,” he concludes.
Exactly what I said! . . . well, mouthed.
Mom’s not pleased. “Why hasn’t anybody noticed this?!”
I noticed it, I think to myself. The PA offers another explanation—
“Think about it—how many doctors have you had?”
Mom and I look at each other. “I really don’t know,” she admits.
“Exactly,” he continues. “Your case is already six binders thick. No one can make their way through all of that. So they skim. When they trim lungs in surgery like they did Charity’s, there can be residual blood for months. But your lungs have already healed—I only know because I took last week’s sputum samples myself. But even the best doctor would never guess that your lungs were clear just a few days ago—that’s why they aren’t more concerned.”
“So what do we do?” asks Mom.
“Ask for a bronchoscopy—they’ll put a scope down your larynx into your lungs so they can see if there’s a problem down there. It’s a minimally invasive procedure, but you might have to insist on it—the doctors mean well, but they can get a bit cocky. In the end, you know your body best—they just know how to treat its symptoms.”
We say goodbye and he moves on, but the validation sends adrenaline on a mad rush through my veins. I am the medical expert on myself. I trust Mom, my doctors, and respiratory therapists—but they aren’t me. They don’t know my body or my medical history as well as I do. They don’t know what I’m feeling, when I’m hot, cold, or anxious. This is my body. If I ever want to get better, I have to take charge of it.
Hours later, Mom is asleep—a rare event. Richard, a new respiratory therapist, is on night duty. Tall, lanky, and older than most of the people on the floor, he doesn’t say much.
Something is off. I can feel it. But I can’t do anything until an alarm sounds. I’m trying to sort out my options when Richard taps on the door.
“Just wanna check in on you,” he says, with a heavy Cleveland drawl. My discomfort must be evident, because he continues, “Would ya like to sit up?”
I nod and he helps me. Leaning forward, I rest my elbows on my knees and hold my forehead in my hands. My chest is heavy, my head aches. I feel like my body is fitted only loosely around my soul. It’s one of the strangest sensations I’ve ever experienced.
“If you don’t mind,” says Richard, “I’d just as soon stay here. Your mom could use some sleep and, well,” he pauses, “I just think you shouldn’t be alone tonight. I can get a nurse if you’d rather, it’s just they’re usually busier than I am.”
I nod, grateful for his intuition. Richard stands sentinel over me as I struggle through the night. At 3:00 a.m., I start suffocating. Within moments, a bevy of alarms sound. Richard snakes a clear tube down my throat and suctions up three giant clots of mucus and blood from my lungs, one after another. The process is extremely uncomfortable but, once he’s done, I feel a bit better. Finally I fall asleep, secure with Richard as my protector.
I awake to the bleat of alarms, surrounded by nurses and respiratory therapists. I can’t breathe. “On the count of three,” shouts Russ, back for the morning shift. “. . . Three!” Blood spatters across me and the room as he pulls the trach out of my neck. Once he’s inserted a new one, I can breathe again. A nurse pushes a shot of Fent into my IV and, in moments, I drift back to sleep.
When I awake, the new doctor on call comes into my room with Russ. “You are not working hard enough, Ms. Tillemann-Dick,” she proclaims with a self-righteous trill, medical file in hand.
Excuse me? My eyes pop open. Even when doctors and I disagree, they’ve never questioned my work ethic. Mom pipes up before I can protest.
“You obviously know nothing about my daughter, Doctor. Unless it’s cleaning, she never shies away from hard work.”
Mom knows me so well; it warms my heart.
“I know that she was almost weaned a week ago and now she’s refusing to go off the vent for more than a few hours at a time. If—” I try to interrupt her, but I can only mouth words indignantly. The doctor glares at me. “What? I can’t understand her. What’s she trying to say?”
“Maybe if she wasn’t in so much pain . . .” interjects Mom, beginning to assert her pet theory.
Not this again. I kick my legs and wave my arms. “Can—I—please—speak?” Finally, Russ unhooks me from the vent and caps my trach.
“Doctor,” I say, calming down immediately, “if you look at your notes, you’ll see that for weeks, I made steady progress.”
“Exactly. That’s why I am so upset that you’ve suddenly lost your will to live.”
I try not to roll my eyes. “I’ve decompensated. That’s different. It indicates a bigger problem.”
“The pain . . .” repeats Mom.
“No. Not the pain,” I counter. “Something else is wrong.”
“So you’re the doctor now?” she asks, folding her arms in front of her.
I glare at her, steely eyed. “I want a bronchoscopy.”
“I don’t perform bronchs.”
“Then send me to somebody who does.”
“Well, I can order one if you’re going to insist,” she conciliates grumpily.
“Good. When’s the soonest I can have it?” I ask resolutely.
“Tomorrow. You’ll get it by tomorrow,” she says and leaves the room. The door closes, and I finally feel my face relax.
Once the samples from the bronchoscopy are analyzed, we find out what’s wrong: it’s a particularly nasty case of pneumonia. But not anything the hospital can’t fix. Now on full vent support, I start an intensive course of antibiotics and steroids. I’d like to feel vindicated, but I’m just too tired for that.
Back on recovery road, I’m working with Dean daily now. Simple leg lifts, reaches, and stretches leave me exhausted, but in a good way—the kind of exhaustion that means progress. I stand. I’m finally feeling human. From eating to going to the bathroom on a toilet, most normal activities are a challenge. But for the first time since waking up, I see a path home.
Thanksgiving is less than a week away and it’s clear I’m still going to be here.
“Mom,” I ask, “could we have Thanksgiving in the hospital?”
She looks at me skeptically. “Here? Chary, your room is tiny!”
She’s right. But I keep pushing her. I know she doesn’t want to disappoint me, and I take advantage. I smile as saccharinely as I can muster and bat my lashes in a performance worthy of any operetta coquette. She caves. Before anything else, we have to get RSVPs. I feel a blush of embarrassment when both Tomicah and Kimber—both of whom have small children—decline, afraid I’ve finally asked too much. But when Levi, Corban, Liberty, Shiloh, Mercina, Glorianna, and Zen all enthusiastically confirm, the party’s back on. I’m so excited I hardly realize the bureaucratic mess I’m making for Mom. But if anyone can make this hospital dream into a reality, she can.
Of Mom’s many abilities, perhaps the most formidable is her uncanny gift for making friends. In the hospital, she’s compiled quite the portfolio of people. Concert pianists, congressmen, hospital staff and administrators, fellow patients and their families—all of them love her. Mom has her divinity school crowd—three chaplains from the hospital who regularly visit. There are the nurses, respiratory therapists, residents, and fellows who spend their lunch and coffee breaks visiting with us, braiding my hair and checking in just because. There’s the heart transplant surgeon that Mom meets at the children’s museum when my nephews are in town. She looks over my chart when we don’t know the doctor on call. Then there’s the tech who’s taken to asking Mom for dating advice, plus everyone else who stops by to pick up a piece of chocolate or candy from her always-stocked treat jar. Then, of course, there’s Jeanne.
Jeanne rose through the ranks of the Cleveland Clinic as nurse to then-famed cardiothoracic surgeon Dr. Toby Cosgrove. When Dr. Cosgrove was appointed to lead the entire hospital
system as CEO, he brought Jeanne with him. Like many nurses, her road to health care wasn’t easy. But now she serves as the eyes and ears of one of the top hospital executives in the country. She is the patron saint of patients at the Cleveland Clinic.
When I wake up, Jeanne is just leaving. “Sweetheart, we’re going to make sure Thanksgiving is great!” she assures me before shutting the door behind her.
“Chary! There’s a conference room at the end of the hall. Jeanne’s going to help us find tables from another ward so we can have Thanksgiving here!”
Mom and I finally have something to look forward to other than leaving this place. We throw ourselves into the preparations. Mom starts to collect supplies: festive paper plates and plastic cutlery, plastic glasses, napkins. I sit on my bed painting place cards for every guest. Mom and I assemble a smorgasbord of a menu. Everything is coming together perfectly.
During all this, I start walking. At first, I could only take a few steps before collapsing back into my bed, but I’m improving every day. I concoct a plan: on Thanksgiving, I’m going to walk to dinner. How’s that for a grand entrance? Dean measures the hall for me—it’s fifty steps. I train as tirelessly as an emaciated recent transplantee can, pacing back and forth endlessly across my room. So far, I’m at about thirty steps.
It’s Wednesday and Thanksgiving is almost upon us. I feel excited and nervous and stressed that I’m still on the vent. I’m like an emotional Jenga tower, getting higher and less structurally sound with each passing hour.
When Mom is restless, she cleans. The problem is that each time she reorganizes our 100-square-foot room, she loses track of everything in it. “Charity,” she asks, “where are the soft pink socks? I just had them . . .”
I try to gesture toward the far side of my bed, where I saw her put them down that morning.
“Oh . . . and where’s the rest of the chocolate for the nurses? It was just here . . .”
Every surface in this room is filled to capacity. The wall has so many cards, we’ve begun to pile them one atop another. We’ve managed to obscure our one window with a three-foot-high stack of books, pictures, medical equipment, snacks, blankets—anything you could think to have in a hospital room and more. Boxes are shoved in the storage cabinet and under the bed, leaving about thirty square feet of floor space free from the clutter collected during our extended hospital stay.
I turn to grab my whiteboard. Now that I can use it, it’s become vital for communicating words that Mom and my nurses can’t lip-read. It’s nice to be understood again. But my whiteboard’s not where it should be. I look to my right. Then to my left. Then on my table and under my covers.
“Where’s my whiteboard?” I ask.
“Chary, I can’t understand you,” says Mom.
“Mom,” I mouth slowly, “where—is—my—white—board?”
“Oh . . . I just had it. I was putting it away somewhere . . .”
This room is making me crazy. Mom is making me crazy.
“Mom,” I mouth, frustrated, “this is the only thing in this mess of stuff that I actually use. Please don’t move it.”
“Chary, I can’t understand you,” she repeats, as if that would be possible while she has her back turned to me.
“That’s because you aren’t trying, Mom! You aren’t even looking at me!” I silently retort, to no effect. I start clicking my tongue incessantly to get her attention.
“Do you need something?” she says, her back still toward me.
I’m about to explode. This miniature whiteboard is the closest thing I have to self-sufficiency, and losing it in the morass of Mom’s “organizing” is more than I can handle.
I’m still clicking my tongue furiously when Mom whips around.
“What, Charity?! I’m cleaning!” she snaps as she passes me my whiteboard.
“STOP!” I scribble in all caps, “JUST STOP.” I flap the board at her until she stops to read it. She taps her foot impatiently as I erase that and write more: “Stop cleaning. Stop puttering. Sit down. Read a book. Call the kids. This isn’t helping . . .” I turn the sign around to show Mom.
“Oh. You want me to read a book? I’d love to read a book! That’s all Yoni seems to do when he’s here! I wish he would clean more . . .” she mutters.
I begin a new note. “Mom, there is NO space to clean up. There is no space to do anything. You are driving me nuts!”
“STOP SCREAMING AT ME!” yells Mom.
“Stop screaming at you!?” I scribble. “I can’t even talk!”
“I know you well enough to know when you’re screaming at me, Charity Sunshine!!!”
We’re staring daggers at each other when we hear a knock at the door. It’s Michelle, one of my favorite nurses.
“Hey guuuuys!” she twitters into the room.
Mom and I smile uncomfortably at her, both of us still red in the face.
“You know? There is always such a wonderful spirit in here. I just feel so peaceful and happy with you guys.” We stare, agape, as she continues, “It’s so different from any of the other rooms in this wing.”
Mom and I aren’t sure whether to burst out laughing or continue our argument. Is Michelle joking? Did she hear us from the hall and come to break up our argument? Mom and I have become sort of like the alternate nurses’ lounge—we’re probably giving out two to three bags of candy to hospital staff every week . . . maybe she just wants some chocolate? Whatever her reason for coming by, we’re both grateful.
“Oh! That’s it!” she exclaims. “I brought you matzo ball soup from that deli I was telling you about! You’re going to love it.”
She scurries out of the room and is back within minutes with a brown paper bag. “I hope you like it,” she says, opening the steaming carry-out container. “It’s my favorite thing to eat in this city.” Michelle pours some of the broth into the bowl on my desk table and a matzo ball the size of a softball splashes in. “Try it!” she insists.
I down the entire dumpling and its accompanying broth in less than a minute. When I’m done, Michelle and Mom decide to do my hair. It needs rebraiding almost every day. The steroids and surgical trauma haven’t been easy on my scalp—sometimes it feels like a part-time job just keeping my hair from turning into one giant rat’s nest or disappearing altogether.
As Michelle and Mom massage a heated no-rinse shampoo cap on my head, the rest of me starts to feel warm and sudsy too. On this Thanksgiving Eve, I really am grateful. For breath, for life, for my wonderful mother, and for the kind people who keep me from killing her.
Thursday dawns gray, a dour sleet streaking the window. Considering that most of the family is driving and road conditions are poor, it’s unclear how many of them will actually make it to our Thanksgiving dinner. Using my recently improved fine motor skills, I finish up their place cards—hoping that if I do, my loved ones will appear to make use of them.
As I doodle away, the door opens. I look up to see Glorianna and Mercina. At sixteen and seventeen, they already look grown up. Glorianna’s wearing a new pair of glasses and mascara—something that until very recently she’d use only when forced. Mercina is as perfectly coiffed as ever. A moment later, Zen walks in. Barely thirteen, he’s grown nearly half a foot since I last saw him. None of us have seen each other in months and soon, we’re all crying. Everyone is nervous about germs, so they wave deliriously from the foot of my bed. As I mouth greetings and questions, it becomes clear Mercina has a gift for reading lips.
Soon, Dean knocks on the door. It’s time to prepare.
“We have thirty-five minutes on this oxygen tank, maybe a little less because of the walk. Are you ready to go?” he asks.
A current runs down my spine. I’ve practiced. I’ve rehearsed. I know my steps and I’m ready.
The nurse connects my trach to a giant inflated balloon he’ll use to manually fill my lungs with oxygen. Then I stand, holding onto Mom and Zen instead of my walker. Fifty steps. Fifty steps to the room, then a few more to my chai
r. I take my first step. Two . . . three . . . four . . . The rubber soles of my oversized tennis shoes squeak against the floor. With each step, I come closer to the door. Eight . . . nine . . . ten . . . When I finally pass the threshold, the entire hospital wing is waiting to cheer me on. Mom and I begin to cry. This is a debut I never anticipated, and I can’t help but feel ill prepared for my performance. It’s thrilling nonetheless. Thirteen . . . fourteen . . . fifteen . . . A nurse follows behind me with a wheelchair, just in case. Twenty . . . twenty-one . . . Beads of sweat began to drip off of my brow. My toes burn and tingle. Twenty-nine . . . thirty . . . My feet have turned into lead blocks, but I continue on. Thirty-six . . . thirty-seven . . . thirty-eight . . . I wonder who will actually be there—did Liberty and Corban make it out from DC? Forty-two . . . forty-three . . . My legs burn, but the doorway is just steps away.
. . . Fifty. Adrenaline flushes my system as I cross the doorway, my shoulders squared, my head high, and my feet really stepping—not shuffling. I feel my knees buckle, but I take one final stride toward the table before sinking into the wheelchair behind me.
Looking around the room, I see Mom, Levi, Corban, Liberty, Shiloh, Mercina, Glorianna, and Zenith. Our friends Dennis, Elizabeth, Richard, and Joela. I might not have been able to breathe on my own today, but I walked all the way from my room! I look around the stark, windowless conference space. There’s a whiteboard on one wall and a large screen on the other. Thanks to an anonymous gift, there are beautiful flowers. Otherwise, the space isn’t fancy or even particularly comfortable. It’s about as different from our gorgeous, warm dining room as anywhere I’ve been. But even if we were at home in Denver, I couldn’t imagine a more wonderful holiday. Soon enough, I’ll walk farther—I’ll run and climb and dance and breathe. But today, I walked into Thanksgiving dinner with Zen and Mom holding me arm in arm. Today, that’s more than enough cause for a celebration of thanks.
The Encore Page 12