I TURNED TWENTY-FIVE IN THE HOSPITAL.
Scott arrived first thing in the morning with a croissant in hand, an unlit candle stuck in its middle. He stayed with me until evening and then left just as my friend Jill dropped by for a quick birthday hello.
She looked spectacular.
I wondered if Scott had noticed this on his way out. Jill was always an attractive, eye-catching young woman, but tonight she dazzled in a close-fitting blue-and-white polka-dot dress. She was on her way to a party with her boyfriend. Through a sob-stopping lump in my throat, I told her she was a sight for sore eyes: just beautiful.
“And you’re looking much better today—with your hair all nice and clean.” A few days earlier, Jill had come to visit and I’d asked if she would wash my hair for me in the bathroom sink (I couldn’t possibly stand up in the shower). It had been weeks since my Philadelphia shampoo, and my scalp was oily and itching. With Jill’s help, I broke my own rule of inactivity and got up out of bed just long enough for a cursory lather and rinse, while hugging the basin for support. I began struggling for air before all the suds were out, and Jill suggested gently that we skip the conditioner. But we both knew that a proper shampoo had also been skipped.
Now she was complimenting me on a ponytail of hair that was, really, only half clean. But thanks to Jill, the itch was somewhat relieved.
Before she left, she handed me a small box with sparkly gift wrap. “Open it when you feel like it,” she said. I thanked her, returned her kiss on the cheek with one of my own, and placed the box on my bedside table.
I still hadn’t opened it when my father and Beverly arrived an hour later. They came into my hospital room with celebratory clamor, bringing with them a lobster dinner (for one) so that we could mark this milestone birthday together. They’d been toting meals to my bedside almost every night—steak, pasta, Chinese food—often from the best New York restaurants. My lack of appetite didn’t deter them; night after night they’d arrive at my door with a shopping bag full of dinner (complete with cloth napkin, silverware, and separate plates for salad and entrée); along with the food, they would serve up some welcome company and light conversation that took the spotlight off my sick heart for a precious few minutes. Then they’d leave my room quickly, off to have their own dinner somewhere else—somewhere without an EKG monitor staring at them. Even on my birthday night, I was the only one digging in to the mountain of food they’d brought along. My father and Beverly stood patiently on either side of my bed and watched over me as I ate, just as they’d done almost every night since my arrival at Columbia. My birthday celebration was no different, with my usual polite showing of a hearty appetite that was, in fact, nonexistent. Crumbs would fall between my bedsheets, just like they always did, and once again I would leave them there, fearing the heart-scary effort it would take for me to clear them away with a vigorous sweep of my hand. Yes, this night was going to be like all the others I’d spent on the waiting list: eating a fine meal without a dining partner and sleeping amid the crumbs.
Two or three bites, anyway.
“Maybe one of the nurses would like to finish these,” I said, pointing to the hefty claws that lay untouched on my plate. “Unless one of you wants them.”
“No, thanks,” my father said. “We’re off to Carnegie Hall. Some Wagner tonight. And Brahms, I think. Lovely. You know, the Violin Concerto in D: da-dee, da-dum, dum dum dum.” He’d always loved to hum music to me this way, delighting in how easily I could decode his da-dums.
“Nice. Sounds like a fun evening for you guys,” I said, folding my napkin and placing it on top of a heap of uneaten string beans and hash-brown potatoes.
Beverly tossed the corner of her light cashmere wrap around her shoulder. This was the first signal: my parents were on their way out.
“Happy, happy birthday, darling daughter,” my father said, leaning in for a hug.
I lifted my arms up slowly to return the embrace. “Thanks, Dad, for the food; it was great.”
Beverly stepped around to the other side of my bed, the thin heels of her evening sandals clicking on the tile floor. She lowered her head to give me a kiss. “Love you. Happy birthday.”
“Love you too, both of you,” I said, closing my eyes at the touch of Beverly’s lips against my forehead. When I opened them again in the next second, tears had already welled up, heavy and obvious. Beverly turned toward the window and brushed away a few of her own, then lightly click-stepped her way back to the door to rejoin my father. As they stood there together, hand in hand, I could see in their tight, forced smiles that there was a part of both of them that didn’t want to leave me just yet, especially on my twenty-fifth birthday. But I knew there was another part of them—a stronger part, perhaps—that couldn’t wait to step out of my room, out of the ugliness of Columbia-Presbyterian Hospital and into the warm New York City night where fancy lobster dinners didn’t come with a side serving of V-fib, and the melodies of Brahms rang through the concert halls.
“It’s okay. You can go,” I said, my eyes like delicate teacups filled to the brim, ready to spill.
“Pasta marinara tomorrow?” my father asked.
“Sounds good.”
I blinked, and the first drops fell from my eyes. Damn it. I wanted to hold them until my parents left. I wanted to be able to take from this birthday visit—and all of my parents’ visits—whatever I could that was good, and not ruin it.
There was love worth savoring in the food they brought me. In the nightly visits. In the videos they left at my bedside. In the blanket Beverly knitted for me every day I was in the hospital, sitting at the edge of my bed in the afternoons with balls of white and blue yarn on her lap, needles clacking together softly, constantly. But there were no words. We never talked about the waiting, the V-fib that almost killed me time and again, the imminent loss of my sick heart. My father and Beverly had no wisdom or comfort to pass along when it came to something as strange and as achingly sad as the heart transplant that awaited their twenty-five-year-old daughter. There were no strings they could pull to speed up the waiting process and make a donor heart immediately available, so I pretended not to notice when I saw my father follow a doctor into the hall one day like a puppy dog, trailing after him with the question that no one on the heart transplant team ever liked to hear: “How’s she doing on the list?”
“She’s still number one,” I heard the doctor reply, dry as a bone.
“And that’s good. That’s the best, right? I mean, what more can we possibly do? Is there anything else we can do?”
The uncharacteristic entreaty in my father’s voice twisted me into knots. Oh, my poor, helpless dad.
The doctor cut him off. “We’ve done everything we can do. Now we just wait.”
“Sure. Sure. Okay.” My father was forced to retreat. He had no power here. His doctor gods didn’t either.
And now my father and Beverly couldn’t tolerate the final moments of my birthday visit. Neither could I. Their exit required a bright green light from me, so I told them—again—that they could go. It was okay. Thanks for the birthday dinner. See you tomorrow.
With a quick wave, they were out the door, and I was left alone with the remainder of my tears.
But my nighttime visitations were not over. Soon the evening juice cart would arrive. I looked forward to it. A nurse’s aide came around to each patient’s room at bedtime, offering up graham crackers and a smile, plus a variety of juices from her cart. I always chose Hawaiian Punch—“The kid stuff again, right?” she’d say—and I sipped it slowly, slurping like a six-year-old, alternating swallows with little bites of sweet cracker. My first-grade teacher used to give us these same grahams as a snack, I’d recall, with the arrival of the juice cart night after night. After we munched at our desks, she’d tell us to put our heads down, close our eyes, and think about something nice—like a party or a day at the beach. Now, twenty-five years old, in a hospital bed with EKG wires stuck to my chest and shoulders, I reached back in my memory and pulled into the present the sense of calm that used to come over my tiny, sleepy body back in first grade, when I folded my arms on the desk in front of me and laid my head gently down for some happy-time rest. The teacher would walk around the room and place two fingers on each child’s shoulder—just for a moment—and it would feel to every comfy-wumfy one of us that we were being tucked in with love.
Now the juice cart was my good-night kiss.
Two graham crackers, a Dixie cupful of Hawaiian Punch, thirty seconds spent studying my heart lines on the EKG monitor—and then nighty-night. Another day of waiting gone by. Maybe my new heart would come tonight, in the middle of the noisy, restless hospital darkness: the wildest, most unbelievable dream-come-true.
Or maybe it would come tomorrow.
Dr. Ganz told me it would come soon. Very soon. He was leaving for a trip to Paris with his wife—a fortieth-birthday celebration—and expected that I would be transplanted while he was away. “I bet you’ll have your heart by the time I come back,” he said, smiling down at me with his usual kindness. “I’ll be gone two weeks.”
Two weeks?
“Just think about it. The next time I see you, you’ll be out of here.” He rolled his eyes to the ceiling, back down, and then wall-to-wall, left to right. “You’ll be on the fourth floor just a few days after surgery, walking the halls with your new heart.”
I wasn’t smiling.
“Why the long face? I think it’s going to happen for you, Amy. Soon. I really do. You’re number one on the list. You should get a heart any day now. Within two weeks—almost for sure.”
There. He’d said it again: two weeks! How was I supposed to survive two weeks with my doctor so far away from me, on a carefree vacation that didn’t take my worsening health into consideration at all? Sure, a donor heart might become available over the next two weeks—but would I be alive to accept it? Who would watch over my life while Dr. Ganz was traipsing through Paris?
Who would save me?
The episodes of V-fib were under control now, thanks to a combination of several powerful antiarrhythmia medications and my self-imposed state of inertia. But I still needed expert medical management on a daily basis—fine-tuning that I had entrusted to Dr. Ganz. He’d been doing his best to keep me alive for a month by then, eking out the last bits of function from my sick heart, and I needed him to continue—especially now, since there were new signs that my heart muscle was getting even weaker. A most overwhelming fatigue had begun to set into my body, heavier and more limiting as the hours passed, and each day I found that I had less energy to do the simple things I’d done the day before: put on lipstick in anticipation of Scott’s early morning arrival, or brush my teeth in bed and spit into the little pan that lay on my lap. And one morning, when a nurse handed me the usual damp washcloth (“for your privates”) and left the room, as always, long enough for me to wipe between my legs, I realized that over the previous twenty-four hours, I’d somehow lost the strength to clean myself. When the nurse returned with a fresh pair of underpants, I told her not to bother. I wasn’t up for a change today.
I didn’t need another rattling episode of V-fib to remind me how quickly I was dying and how unstoppably. Clean underwear was enough.
“But two weeks!” I said, objecting to my doctor’s Paris vacation in a way he wouldn’t understand. “Dr. Ganz, really!”
“Yes, just two, isn’t that great? A new heart while I’m away,” he said.
All through his optimistic ramblings, one plea continued to screech through my mind: Don’t leave me!
I had been left every day since arriving at Columbia. That’s what happens to sick people who must remain tethered to their hospital beds for an extended period of time: they get left. It’s unavoidable. Every visitor who comes will go. Every on-duty nurse will eventually be off duty. And every doctor who steps into your hospital room will soon walk out again. Some doctors will disappear for two weeks at a time, and when they go this way they leave you scared out of your mind.
The thought of Dr. Ganz’s absence devastated me. I cried and cried after he left my room, until my heartbeat clued into my emotions and began to thump ominously. I reached for another tissue and allowed myself one final whimper before heeding the familiar danger call that was coming from my sick heart. This cry had to stop—now.
I was gathering together the mound of crumpled tissues that lay across my chest when the transplant psychiatrist, Dr. Stein, walked in. Oh, no, he finally had me in his clutches, caught teary-eyed in the middle of a meltdown. And, as usual, I was not in the mood to talk.
Not to him, anyway.
Dr. Stein was part of the transplant team, which included a dedicated cadre of cardiologists, surgeons, nurses, physical therapists, social workers, nutritionists, and even dentists. I didn’t choose Dr. Stein; he was assigned to me, as he was to all pre-transplant patients, who he would evaluate psychologically as part of their wait-list requirements. Since I had remained in the hospital after being placed on the transplant list, Dr. Stein had made it his business to stand at the foot of my bed every few days and try to strike up some conversation. From time to time, I’d oblige him with a few paltry shavings of my thoughts and feelings, but most often I gave him only mumblings of obvious complaint (“When will I get a heart already?”) and so avoided being fodder for his brand of bedside psychotherapy. I found his visits to be a nuisance more than anything else, and as the days passed I would come to feel more and more sorry for the guy, with his stiff, awkward body language and the way he pulled at his sparse smattering of chin hair during the long silences that hung in the tense space between us. Our talks had terrible starts and stops, gaping holes, and uncomfortable final moments, wherein one of us would get up the courage to wrap up our empty exchange for the day and say something like, “Okay, then. All right. Okay. We’re done? Yes? Done? See you, then. Good? Good.”
And through this staccato of words we would agree: our discussion had come to its usual sticky end.
But when Dr. Stein arrived at my door today, on the heels of the Paris-bound Dr. Ganz, he sensed he just might have hit the jackpot. Something was up, something that might lead me to engage in a real discussion with him for once.
In spite of myself, I helped him out.
“Dr. Ganz is leaving me—for two weeks,” I told him.
I’d opened the window wider than ever. Dr. Stein flew right in with a couple of suggestions I might want to consider. I probably had a lot of “feelings” about people coming and going, visiting me and then returning to their healthy lives, while I had no choice but to remain in the hospital—indefinitely. He told me this was understandable and then laid on the emphasis by using himself as an example. “I can see how it happens. Like, for instance, I’m going away for an extended weekend in the Hamptons tomorrow. I’ll be relaxing at the beach for three days, and then when I come back I’ll be tanned and rested. And you’ll probably still be in this room. It’s got to make you feel angry, really angry. I think I would feel a whole lot of anger if I were in your place.”
Anger?
There was some anger inside me. But it was buried beneath layers and layers of a much more urgent emotion that demanded my full attention every moment: raw, all-encompassing fear. No one recognized that feeling, not Dr. Ganz and not even this transplant psychiatrist. They didn’t appreciate the extent to which I was caught up in being afraid of my own body. Hell, I could hardly indulge in the luxury of anger. I was too busy trying to help save my life—clinging to the people and things I believed were saving it along with me. Like Dr. Ganz, arrhythmia expert and most kindly soul. Like Fred, the nurse who knew just what to do when the alarm sounded above my door. And like my hospital room, where I relied on the safety of the heartbeat monitor that watched over me 24/7. Give Dr. Ganz leave for a long vacation or send Fred home for a three-day break—or wheel me out of my room on a stretcher, down three floors to have an echocardiogram—and I was overwhelmed by the most intense fear.
I could have fleshed out a few of these scenarios for Dr. Stein, or given him examples of recent experiences that showed fear reigning supreme over anger. I considered sharing with him what had happened to me several days earlier as I lay on a stretcher in an unfamiliar hallway, unattended and alone, waiting to have a diagnostic test that would complete the last step in placing me on the transplant list: how I’d spun into a vortex of fear and thought I might die right then and there—and this was not an exaggeration of possibility. No one was monitoring my heart. There was no alarm attached to me that would alert anyone if I went into V-fib. For the first time in weeks, I was without the safety of wires and a nearby defibrillator cart. My heart would either break into a lethal arrhythmia in that hallway or it wouldn’t, and no one seemed to care or even notice. How maddening, right? It was enough to make any patient angry—stranded on a stretcher in that deserted hallway, ten minutes passing, then twenty, then thirty—but all I felt was paralyzing fear. Placing two fingers against the pulse in my neck, I counted my own heartbeats, monitoring the rhythm so I might scream for help if I felt too many wild skips in a row. I focused only on keeping myself alive until a doctor or skilled nurse arrived to take that responsibility back from me. It was an hour and a half before the journey came to an end and someone from the transport staff wheeled me back to my hospital room. When I arrived there, safe but hardly sound, I didn’t breathe angry fire, only a shuddering exhalation of relief. I was no longer left alone to die, and I could finally stop counting heartbeats.
I decided to keep this story to myself and not share anything more with Dr. Stein than I had to. I told him simply that I wasn’t feeling very much anger.
He widened his eyes like a doll, not believing me. “It would be only normal.”
“I said I’m not angry!” At least not until that moment.
Dr. Stein lifted his hands up by his shoulders like an accused criminal showing he’s got nothing to hide, “Look, I’m only suggesting something here… based on what I observe.”
“What you observe? I barely speak to you. You just assume I’m supposed to fit into a sick-person model you read about in Psych 101 or 102 maybe. But I can tell you, when you try to push this anger thing on me it just makes you look like a big idiot—standing in your ivory tower, telling me what I feel. Don’t kid yourself. You don’t know the first thing about me, Doctor.”
These were more words than this guy had gotten out of me in three weeks. He pulled slowly at his goatee in silence, his eyes glazing over, half focused on my face.
I jumped in with a thought I’d been keeping under wraps for weeks. “And you can’t even look me in the eye!”
“I have a wandering eye,” he said.
And left.