Our words are winding down. There are silences, which means one of us is going to suggest we call it a night. And I’m thinking, Okay, here it comes, it’s got to come now—a question from Joy that I should be prepared for, but I’m not.
She gets up from the couch and stands in front of me, puts her hands on her hips, and, yes, just as I thought: “How about if I sleep in your room tonight? It might make you feel more comfortable.”
I look up at her and force a grin, closemouthed.
I’m buying time here. A quick answer could hurt her feelings.
Joy extends her arms, and I grab hold as she pulls me to my feet with a heave-ho. “Hey, look at that,” she says, pointing, and I turn to see the deep well in the sofa cushion left by my arms-around-knees position.
“Guess I haven’t moved in a while.”
Joy nods. She and I both know that I didn’t protest when she told me to stay put at lunchtime and fetched us each a yogurt from the fridge, and then again when dinner came and she carried into the family room two bowls of soup on a tray.
“So how ’bout it? Bunk up tonight?” she asks again, this time doing the raised eyebrow thing that prompts me to put my hands on her shoulders and say I’m fine and make a little joke about how, with Scott away on a business trip, I want to take advantage of the rare occasion when the remote control is mine, all mine.
It’s a flimsy excuse, I know. But it’s the best I can do on the spot.
Joy keeps on, “I hereby cede the remote control to you, my friend, and may you watch The Real Housewives of New York until your brain melts—won’t bother me a bit. I’ve got a pile of work I planned on attacking in bed tonight anyway.”
At midnight? After a day like this?
I don’t believe her.
But, then, she doesn’t believe me either. I am not one to care a whit about the remote, and I’ve never once seen the Real Housewives of anywhere. And Joy knows it.
“What if I put on The Kardashians?” I say, teasing her with the guilty TV pleasure we’ve both fessed up to following with odd fascination.
“Then I’ll hope it’s a rerun.”
“Oh, you watch those too—admit it,” I say, trying to keep the banter going because it feels—for the moment, at least—like us. But each successive comeback is an energy drain. We’re both so weary, even our kidding words drop to almost whispers.
And now we’re moving through the family room and on toward the kitchen—fluffing one cushion and not another, grabbing two mugs and leaving two glasses, turning off random lights. We float, wide-eyed, absent, leaving imperfection in our wake.
Without saying out loud to each other in agreement, Let’s leave the rest ’til morning, we drift to the base of the staircase as one. Here, we find Joy’s overnight bag at our feet, unmoved from the spot where she dropped it in deliberate haste after coming straight from the airport. “And don’t ask me if I want to head to the guest room to freshen up,” she instructed early this morning after a quick hello hug on arrival at my front door, the New York Times from the driveway tucked under her arm, “because I don’t. Just tell me which couch to sit on and let’s get to it.” I cocked my head to the side and smiled, not knowing quite what to make of this whirl of bossiness that was now spinning itself out of its winter coat and heading toward the kitchen, calling out, “Let’s make tea!”
This was my friend Joy—exaggerated.
I’d noticed the same a week earlier when I called her at the office and interrupted her pressure cooker workday with an awkward ask: “Here’s the thing—on the sixth, Scott has to go away for three days, ah . . . do you think maybe you could . . .”
“Done!” She didn’t even pause to check her calendar.
“But, Joy, wait . . . let me just tell you, it’s not going to be any fun. I’m at my worst and—”
“I’m there. End of discussion. Email me the exact dates. And now I . . . I’m sorry, but I have to, uh . . .”
“You’re in a meeting.”
“Sort of, I mean, it’s okay, I can talk now if . . .”
“Go, go! I’m good—really!”
And so began the dance—the gliding around each other, watchful, careful.
Uncharacteristically choreographed. I wasn’t good at all, and Joy’s executive-level job was not flexible enough to allow her to just drop out of the office on a week’s notice.
We were not ourselves with each other. But how could we be? My transplanted heart was coming to its abrupt end. It was not a case of Let’s try this medicine or Let’s watch and wait. No—it was over. There was no definitive bright spot of hope, only retransplant—if my heart had enough beats left to get me there.
And if I chose to let it try.
This was the subject matter we would take on for three uninterrupted days together: whether I would choose to rise up one last time and brave the harrowing ordeal and risks of a retransplant. It was so far beyond anything we had combed through or sorted out in the past, even considering how adept Joy had become at digging into the nitty-gritty of medical crises in her role as good friend to a heart transplant patient for more than two decades. It would require of each of us a new kind of poise—an affected one—and a backbone so straight and sturdy it could support a basis for communication we’d never had use for in the past: sparing each other.
With her high-energy, can-do determination to be the best friend ever—at my side 24/7, taking Scott’s place by listening, reasoning, and weighing the terrible options with me—Joy strove to keep hidden the deep worry and sadness that had her dabbing her eyes right until the cab dropped her at the bottom of my driveway. By the time she rang my doorbell, the wad of tissues peeking out from her fist and the red-ringed eyes that greeted mine were the only outward sign of her concern, masked by her otherwise bright smile and enthusiastic embrace.
And me, with my I’m fine nonsense, greeting Joy in a way that would put her at ease—dressed in exercise leggings and a bright-colored running top, as if I might head to the gym at any moment. I even broke my weeklong stint of bedroom-slipper shuffling with a purposeful lacing-up of well-worn Nikes, the ones I ran miles in until about a month ago when intense pain started shooting down my arms at random moments and my doctor told me, “Maybe you should lay off exercise until we know what’s going on.”
I hadn’t had reason to put on my running sneakers again until today, for Joy.
For the performance I would do for her, the high kicks, twirls, and dips to show how fine I was.
There I was this morning at the front door, with my freshly washed, bouncy hair, a little mascara and blush, and a lip-gloss smile that I stretched wider than usual. This way, I hoped, I might create more room in my airway to better handle the breathlessness that accompanied even the smallest expenditure of energy. Like when I followed Joy’s quickstep dash into the kitchen, trailing behind in slow motion, hoping she wouldn’t notice the lag. By the time I joined her, she’d already flipped the lid off the teakettle and had turned to the sink to fill it. I grabbed hold of the nearest countertop for support. She swung back around and I let go in a flash.
“I have to say, you look great . . . mmm, maybe a little on the thin side, though,” she said, placing the kettle down and turning her head this way and that, taking me in with a long look.
“I’ve been eating fine.”
I haven’t been.
Joy’s cell phone rang just then. She ran back to the staircase to retrieve it from her bag and called out, “I gotta pick this up, it’s the office. But it should be quiet after this—no more calls for the rest of the day.”
Joy had a team of nearly seven hundred people working under her at Fannie Mae. Her decade-long senior vice president role in the Washington, DC, office had shifted with the fallout of the housing crisis, and she now found herself at the very center of the national programs to restructure mortgages and help people stay in their homes. She rose tirelessly to the challenge of round-the-clock hours and daunting demands, often sitting in hot seats in front of US Treasury big shots who would make a less stalwart VP melt. Always quick to use a baseball reference, Joy would tell me that she strove to “knock it out of the park” when it came to her work, and this meant overpreparing and overperfecting to achieve an outcome that reverberated beyond corporate walls.
Her work mattered on a grand scale, certainly, and also a personal one. Joy told me many times how deeply connected she felt to the results of her efforts—to the thousands and thousands of people who could benefit from or be hurt by the policies she helped inform and shape. After all, she herself grew up in a barely middle-class family that lived on an income that might easily have placed them in the same financial perils she now sought to relieve for others.
So when she picked up her cell phone early this morning—and then again at eleven, twice in the late afternoon, and one more time after dinner—“Oops, it’s the Treasury again, I’ll take this in the other room”—I was not at all surprised. Part of what I love and admire about Joy is exactly this: her unstoppable devotion, both as a working person and as a friend. She’s one of those rare women who somehow manages to succeed in filling these two roles to fullest capacity without showing a hint of strain. Friends, as well as the tall stacks of work on Joy’s desk, get the absolute best out of her. But this comes at a personal cost, of course.
“I’m a giver, what can I say?” is how she has responded to my frequent urging to ease up on her work schedule after consecutive weeks of punishing business travel, or at least to say no to those out-of-town friends of friends who ask last minute to stay at her apartment for a few days of sightseeing in Washington the weekend she finally returns home. (She welcomes them instead.)
And now I see in front of me again a worn-out but ever-willing Joy. This time, though, I am the one taking her giving, having stolen from her one full workday so far and, at this late hour, some much-needed sleep time as well.
I reach for her overnight bag at the bottom of the staircase and am met with a grab for the handle and a squawk along the lines of Are you kidding me?
“You’re my guest,” I say. “And . . . your bad shoulder.”
“Uh, excuse me, Miss Manners. May I point out . . . your heart?”
“I can climb the stairs in my own house, Joy. I do it two, three times a day carrying all kinds of things—dental floss, a roll of toilet paper, the occasional elephant,” I cluck, in a small effort at poking fun, but at once I feel the weight of the lie. I can climb, yes, but increasingly it requires a mix of concentration and courage to handle the sputtering heart that awaits me at the top.
I gesture for her to go first—“After you, my dear!”—trying to sound nonchalant, but hoping with all hope that she will go slowly.
And she does.
Very slowly.
Stepping up and then up again, I notice Joy’s ankles peeking out from the bottom of her chinos and see that they’re quite swollen. The bone that normally protrudes from the outside of each ankle is submerged by waterlog. Joy has complained to me lately about puffiness that hangs on after air travel—but this morning’s flight was only an hour long.
Significant water retention in the extremities is a sign of heart failure.
This is where my mind goes—automatically. I can’t help but think medically.
Of course, I’ve been evaluating my own ankles before bed each night. Pressing along the bone and then up a few inches toward my calf, I’m horrified by the deep imprints my fingers leave behind—like pokes into soft clay at first, then refilling slowly with the overload of body fluid that I know signals big trouble.
“If you push your finger into the base of your ankle, does it leave an indentation for a few seconds?” I asked Joy a few weeks ago when she told me that she couldn’t fit her feet back into her loafers after a flight to Detroit.
“I don’t know.”
“Well, try it and see.”
“Nah, never mind. It’s just my Italian-grandma genes. A pinch of salt and a few hours in a plane, and I balloon up five pounds.”
How easy it was for her to dismiss my concern. It didn’t matter that I had long been Joy’s first call when symptoms like postnasal drip with severe headache showed up. “Is this a sinus infection, Dr. Amy?” she’d ask, and I would dispense advice along with my recommendation for a specific antibiotic, citing swiftly from memory the generic and brand names, milligram dosage, duration of treatment, and side effects. “Tell your doctor you need this,” I would say. I could hear Joy actually applauding through the phone; she marveled at the depth of my medical knowledge, and she enjoyed the benefits of my advice whenever she felt something brewing.
But when it came to puffy extremities, my knowledge and vigilance did not apply to Joy. She was healthy. Normal. She and I could never look at puffy ankles the same way.
Reaching the top step now, Joy’s legs move out of sight—and mind. A racing heartbeat takes me over, as I knew it would. It’s a relief to see her make an unhurried left turn and amble down the hall at a lazy pace; I may just be able to catch up.
She puts down her bag and exhales, “Long day,” and shoots me a sly smile, shifting her eyes repeatedly toward my bedroom door as I approach—a signal to me that she’s still up for sleeping in my room.
“Something going on with your eyes there, Joy?” I imitate her with exaggerated side-glances.
“Whatever do you mean? I’m just giving the ol’ eyeballs some exercise . . . and my bushy eyebrows too!” she jokes, wiggling her face like Groucho Marx. But within seconds our smiles falter.
It’s time to go to bed.
Joy’s last crusade has to be here and now, or not at all.
She decelerates. Pauses. Blinks twice and opens her mouth a few seconds before anything comes out. “Seriously, my friend—you don’t have to be alone.”
“Oh—but I do.”
She folds her arms and sighs. “Why? You don’t need to prove anything. I know how strong you are. Take a break from it tonight, just this once. I’m here. Let me help make this a nice, easy night for you.”
A nice, easy night?
“Joy—I’m sick!”
My words hang in the air.
She drops her head. “I know,” she whispers.
But she doesn’t.
Not really.
What Joy knows is the medical reality revealed three weeks ago by an invasive cardiac exam: that unless I get a second heart transplant soon, I’m going to die. But in all the hours we spent today in deep conversation, I did not tell her anything about how this dying feels.
I lift my gaze to the far end of the hallway and stare drearily as if into dense fog. “Look, Joy. I’m . . . It’s . . . it’s like my grandmother. She was old, had a really sick heart. Wore one of those emergency-call necklaces. She pressed the button on it one day and the paramedics got there pretty fast, but they couldn’t save her. They said it was one heart attack too many. And everyone at the funeral was all, Oh, she’s dead, oh, we’ve lost her. Death, death, death, you know? As if that’s what happened to her.”
I lean against the wall and slump. I’ve been standing too long.
Joy steps toward me. “You okay?”
I hold up my hand: Stop.
“But death—that wasn’t what happened, really. What happened to my grandmother was the damn heart attack that made her press that button—crushing pain in the chest must’ve taken the breath right out of her, collapsed her to the floor, poor thing, terrified. I heard they found her in a pool of diarrhea and vomit. That’s what my grandma felt at the end. That’s what happened to her. Death is just the thing that happens to the people you leave behind.”
I move away from the wall and will myself to stand straight.
“I’m grandma on the floor, Joy. You sleeping in my room is not going to make my night any easier.”
Her eyes fill instantly. A tear escapes, and she turns her head to hide it beneath the curve of her blond bob.
The grief has become too heavy, too real—for both of us. Our dance of sparing each other isn’t going to work anymore, so we stop. And all I can think to do in this moment at the catty-corner of bedroom and guest room is to say, “I love you, and I can’t tell you how much I appreciate . . .”
Up shoots her hand, sweeping toward my nose, away, away, which I understand to mean Shut. Up. With. That.
So I do.
Wiping our eyes, we smile at each other—this time for real. Two bedroom doors close simultaneously, our faces disappearing behind them.
Click.
I am alone.
And now I have to try to not die tonight.
This all started about two months ago, with what I thought was a worn-out pillow. I lay down in bed one night and sensed that my body was on a downward slope with my head positioned lower than my feet, causing my insides to bunch up around my chest and throat. It was hard to breathe.
I told Scott it was time we both got new pillows.
But the same thing continued to happen night after night, no matter the feather count beneath my head. Breathing my way into sleep became fraught.
“It feels like the room is tilted,” I told Scott, jumping from our bed and squatting beside it to see if the plane was level. “Maybe the floor is settling on a slant or something.”
He shrugged—“Seems fine to me”—and curled into sleep position.
After all, I didn’t say anything about feeling out of breath.
I grabbed my pillow and tossed it by the footboard at the other end of the bed. I lay down, this time in reverse position, predicting that my head would feel higher than my feet this way. But within seconds I was up again—I shot up, actually—to a fully upright sitting position.
I was gasping.
After a minute or two, I caught my breath and struggled quickly to settle my mind before extreme worry set in. I was not going to let myself get really scared—not yet. I did a brief body check: My heart wasn’t pounding. I was not sweating or in pain. I was able to breathe in this small moment, sitting up.
Calm, Amy, calm.
I knew well that no good could come from getting a transplanted heart all worked up.
I willed myself to refocus.
Maybe if I open my mouth really wide there will be a better flow of air, I told myself, holding down the creeping panic. I snapped open my jaw to its widest stretch.
Nope.
I thought about propping a bolster pillow behind my back so I could sleep sitting up, but that would be giving in, damn it. I was going to lie down and breathe, because not being able to do so would bring to mind the frightening possibility that my transplanted heart was starting to fail—and the vivid memory that fueled this thought. Breathlessness in bed had also been the first symptom I had felt twenty-six years earlier when I was a busy law student who dismissed the nightly wheezing and gurgling in my chest as some kind of allergy. But I had been wrong: my symptoms back then were actually due to my heart’s diminished pumping capacity and its fearsome consequence—fluid in my lungs.
In bed with Scott all these years later, I cringed as I contemplated whether to force myself to be more accurate in my body assessment this time around. I was fifty years old now, not twenty-five, and after nearly three decades of living and absorbing the teachings of transplant cardiology, it would require more effort to self-deceive than to be honest.
I knew too much.
Am I dying again? I could not stop the question from crossing my mind, but rather than answer, I heaved it aside and vowed not to give in to this breathing thing.
And even when additional ominous symptoms popped up over the next few days and weeks, I remained determined to rise above what was shaping up to be a troubling combination. To give in was unthinkably scary.
“You’re not out of breath—are you?” my doctor asked when I finally called to report that I felt palpitations during and after my morning workouts. His question sent a chill through me—because I knew at once the deadly diagnosis it prodded: heart failure. I worried that I would be letting us both down if I said yes.
“No.”
He sent me for some cardiac tests anyway. And after the first round, which showed marked arrhythmia, we weren’t much closer to a definitive diagnosis.
“Maybe this is just how old transplanted hearts behave,” was the best he could offer me by way of interpretation. Sure, I reasoned, transplanted hearts are prone to skips and runs of fast beats; it was logical that these aberrations might occur increasingly over time. But there was no way to know with certainty what was happening to mine without further invasive testing, since there was hardly any data to compare me with other patients at three decades post–heart transplant. There were not enough of us alive this long after surgery to create a useful cohort. I was an outlier, my doctor confirmed.
It was anyone’s guess why I had survived so far beyond the ten-year if you are really lucky life expectancy given to me by doctors when my natural-born twenty-five-year-old heart suddenly become so sick it had to be severed from my chest and replaced.
The one time I pressed my doctor to explain my longevity, even he hesitated awkwardly, scrambling to come up with something: “Uh, good clean living?”
But I had known lots of clean-living transplant recipients who fought for survival with the same devotion to their donor hearts as I did, and they’d all died.
I feel the weight of this again tonight as I stand beside my empty bed alone and face the breathlessness to come: the transplant years that have made me a mysterious outlier have also made me a vanishing one. In the month leading up to Joy’s visit, my symptoms progressed with dangerous speed from nightly breathing trouble to ominous palpitations and, most recently, to a sharp, radiating pain through my arms and shoulders. And additional testing in the wake of my doctor’s old-transplanted-heart speculation confirmed my worst fears: that my heart is riddled with vasculopathy—a dreaded, incurable transplant artery disease.
The condition is precarious, which means that anything can happen at any time. But please, don’t let it happen tonight—not with Scott away and Joy sleeping in the next room. If my heart suddenly gave out, it would devastate Joy irremediably and Scott would never forgive himself for leaving.
It would be no one’s fault, of course. It would just be bad timing that landed Scott at an important out-of-town meeting that he couldn’t avoid. He is one partner of three in a small candy business he started up recently with two former colleagues. The very foundations of the company—sourcing, production, and distribution—will be worked out over these few days away. He absolutely has to be there.
And Joy—brave Joy, coming here in his absence!—is an enormous relief to Scott. They’d met in law school at the University of Pennsylvania and were great friends long before she and I became close. When I visited Scott on weekends, I was cautious of this wonderful Joy he talked about so animatedly—the girl who, he’d told me in admiring detail, had just created and orchestrated three hours of Wedding Olympics at a nearby park for a friend who was getting married and was worried that her out-of-town guests would have a ho-hum day before the evening party. The range of Joy’s invented competitions included the Toilet Seat Dash (for which the amazing Joy brought in two toddler-size potties as props), with “husband” running some twenty yards to lift the seat up and then “wife” following suit, making her dash to put it down, and so on.
“I can’t wait for you to really get to know her,” Scott said.
I could.
It was no wonder my first imaginings of Joy came with a mixture of wariness and jealousy. This creative, energetic, outgoing gal-pal looked to me like perpetual competition, especially since I was hours away at NYU law school while she was impressing my boyfriend with her high-spirited amiability all week long—in that friend kind of way, of course.
Looking at Joy today, though—sitting on the couch with me at absolute attention, leaning in toward my every word with an expression of complete earnestness and caring—I felt the urge to snap my eyes closed and shake my head like an Etch A Sketch to clear away the thought that my now close friend would have been the type to move in on Scott between my visits to Penn. But Joy and I were in our early twenties back when we first met; having a few drinks too many and winding up with someone else’s boyfriend for a night was not an unusual happening. No one was married; the consequence of dalliance was simply drama, not divorce. And love was just— What was love, anyway?
This is what Scott would show me by astounding example.
We’d been dating less than one year when I was rushed by ambulance to what was then Columbia Presbyterian Hospital (now NewYork-Presbyterian/Columbia University Medical Center) in New York, where I was told that I was dying fast and needed a heart transplant. It was 1988 and Scott was twenty-six, one year older than I. He knelt on the floor beside my ICU bed and asked me to marry him, diamond ring in hand, even though a defibrillator cart careened into my room with terrifying regularity, just barely in time to shock my heart from deathly rhythms. By courageous proposal, this shining, perfectly healthy young man was committing himself to a woman who doctors had predicted might live only ten years after transplant, optimistically speaking—if she even survived to receive a matching donor heart. And yet Scott insisted on marrying me, fully willing to become a widower by the time he turned thirty-six.
What kind of a twenty-six-year-old guy does that?
“I’m lovable, but not that lovable” has been the line I’ve routinely added as a jaunty kick when unfolding the drama of my engagement story for someone new. It always gets the chuckle I intend, but I mean it in all seriousness: How could I be worth this kind of sacrifice?
“Scott’s love for you is not like normal average love, you know that, don’t you?” Joy said this afternoon, lifting her pen from a writing pad and looking up at me. We’d been making a list of the pros and cons of going for a retransplant—or not.
“Yes. I think about it all the time.”
She put the pad on the coffee table in front of us and folded her hands. “Okay, so how does this figure into your choice?”
“I guess you’re thinking that if I say no to a second transplant, I’m essentially saying to Scott, I choose death over the chance to have more years with you.”
“He might see it that way, yeah.”
But I knew this wasn’t so.
The last couple of weeks had forced Scott and me to have some of our most difficult talks, not that our discussions over the years had been easy; my state of constant illness since my transplant had us talking about life and death in ways most couples would never have to. “Am I going to take this one on?” was not a question arising now for the first time in the face of retransplant. The piling up of hospitalizations, emergency room visits, and ambulance rides over the nearly twenty-six transplant years had made each battle call into an option to be discussed rather than an automatic mission on my part. And although, for Scott, anything that saved my life was always worth doing, he understood how, for me, there needed to be a conscious choice because the battle was in my body—and so was the suffering.
I picked up the writing pad and glanced at the bullet points Joy had jotted down. “Look at these cons. Scott has lived every one of them right along with me. He wants me to do the transplant anyway, of course; he wants me with him. But he says he can see why I might say no.”
The list set it out clearly: this second transplant would be far from a cure-all. At best, it promises to be a continuation of what has been a miraculously long and gratefully lived—but terribly sick—heart transplant life. Scott knows that I would have a much shorter life expectancy this time around and that the increased levels of immunosuppressive transplant medicines would bring on an even greater number of serious illnesses. My quality of life would be more trying than it already was. So, while Scott told me with tear-filled eyes that he hoped I would forge on with retransplant, he acknowledged that this was asking a lot of me. But I didn’t think so—not with regard to him, anyway. Scott had every right to ask me for the moon.
“When he proposed in that hospital room twenty-five years ago, it was incredible—I mean, that love could be this deep and true! But Joy—and let’s keep this just between us, okay?—it’s also something I’ve had to measure myself against. I double-check myself for selfishness all the time, even with small things, like, Oh, I should pick up the dirty clothes Scott left by his side of the bed because, after all, he married me even with a heart transplant.”
She laughed.
“No, I mean it. And sometimes I get really tough on myself and ask, Okay, if roles were reversed and it had been young Scott in a hospital bed with a short and very sick life ahead, would I have married him?”
“You would, right?”
“Of course, yes. But I’m answering this question now, as a grown woman. I never thought about it even once when I twenty-five. See? Selfish.”
I felt the familiar pang: I can never be as good a person as Scott.
Comparing myself to him always leaves me feeling the imbalance in what we’ve done for each other. I haven’t had (and probably will never have) the opportunity to commit for Scott an act so great, so all encompassing and lifelong, as his marriage proposal. Lately, though, I’ve been thinking that if I say yes to the transplant, maybe it could be my big sacrifice for love, like he made years ago. But then, every one of our conversations over the last few days has ended with Scott insisting that he absolutely does not want me to take on a second transplant for his sake—and I believe him.
“You’ve got to let all of that go,” Joy said, meeting my eyes. “Scott is maybe the most thoughtful and giving person I know. Who can hold themselves up against that? You’re plenty good, Amy. Plenty. Everything you do every day shows that you adore him.”
Yeah. But when he left on his business trip this morning, I didn’t catch his arm, pull him close, and say, Scotty, I’m going to do it.
I slide under the sheets and launch into the only thing that can carry me through these breathless nights: distraction—by the diligent, even obsessive, and sometimes kooky processes that I sometimes think of as applied magic. I am not proud of this. It is not in my nature to turn to nonsense ritual. But when you’re given ten unlikely years of transplant heartbeats, along with lifelong nonnegotiable medications that can and eventually will invite dangerous infections and cancers to take hold within you repeatedly, optimism just doesn’t cut it.
When the fates of life shine a spotlight sharp and terrible on something that can’t ever be fixed, you might just put on a pair of sunglasses. Not because the muted tones will make things look like they’re not so bad after all, as that’s impossible; you’ve glimpsed the hard, vivid truth, and it stays with you like the blot that endures after looking wide-eyed into a solar eclipse. No, you slide behind those large, dark lenses and become, at key moments, someone unrecognizable—even to yourself.
The direst circumstances rarely connect you with your deepest essence; rather, they distance you from it. And this makes it easier to go on.
What does a woman do when she’s lying on the procedure table, about to have her seventy-fifth heart biopsy—an invasive cardiac transplant exam that becomes exponentially more complex and dangerous over time? There she is, fully awake while a doctor snips off pieces of her heart muscle by inserting a catheter with a razor-tip pincer end through her neck vein and into her left ventricle—in and out, in and out, snip-snip-snip, again and again.
How does she get herself through?
She recites poetry, that’s how. From memory.
Sometimes silently, sometimes aloud.
And she doesn’t give a crap who hears. She’s just getting by.
When my heart jumps as the biopsy catheter lands midventricle, I close my eyes and start: “Invictus.” Out of the night that covers me, black as the pit from pole to pole, I thank whatever gods may be for my unconquerable . . .
Pluck!
The doctor tears one piece of heart tissue, then retracts the catheter from the center of my heart and pulls it out through my neck. He deposits the sample in a sterile container for later examination under a microscope that will reveal either normal cells or aberrant ones that indicate rejection of the donor heart—a disease process that can be treatable, or unstoppable and ultimately fatal.
“We got one,” the doctor chirps, and stuffs the line back in for another go. He will have to extract four sizeable pieces to complete the full procedure, and not every pluck is a successful one. Sometimes it takes him eighteen tries to get good-quality tissue samples.
One time, it required two full recitations of all six pages of T. S. Eliot’s “The Love Song of J. Alfred Prufrock” to hold on during a biopsy that took twenty-two heart plucks to complete.
And Scott had thought I was memorizing all of those stanzas—mumbling tricky sentences to myself in the kitchen while the pasta boiled—for no good reason.
I do not share my mind routines with Scott, or with anyone. Given my age and transplant years, I feel people expect me to be better. More stalwart. Less kooky. I should be well poised in my role of fantastic survivor; it’s all got to be second nature to me by now, right? And because I continue to beat the odds so seamlessly, I stand as an example who gives others hope that many years from now, when they grow old and, inevitably, get hit with some insurmountable health challenge, perhaps they too can lie on exam tables with grace and stretch their expiration date by two decades.
“Whenever I’ve got a huge challenge at work and I just can’t rally myself, I think of you,” Joy said to me today, “and I get perspective and strength. I’m constantly in awe of you—how you tackle whatever tries to knock you down, you’re my—”
“Inspiration? Oh please, please don’t call me that,” I said, hunching forward as if she had suddenly placed a load on my back.
In bed now, my mind returns to this conversation and I round it out with the truth: If you knew what I am about to do now that you are out of sight, Joy, you might come up with different words for me, like terrified and desperate.
This is the Amy no one knows.
And now I must collapse into ritual—not because I’m prone to compulsive behaviors, but rather because some things are just too horrifying, like the need for a second heart transplant.
Tonight, Joy, I count windowpanes.
Lying on my right side, I see four of them in direct view: glass separated by white wooden dividers. I will fill these four spaces with air.
Let’s see: Four is my favorite number. Sixteen is even better since it is four squared, so I will breathe in and out four times on each pane, moving my gaze clockwise as I go from one to the next.
I want to believe that this will bring sufficient oxygen into my body, but as skilled as I am at narrowing my thoughts to focus only on windowpanes or lines of beautiful verse, I have never been successful at subjecting my mind to delusion; I know for sure that even my most concentrated attention cannot work real magic here. I am just trying to get by.
I begin.
Upper left corner: breathe in deep, hold, and out. I repeat this four times, telling myself that it does not matter that my heart is sick and cannot pump anywhere near normal capacity anymore; if I concentrate hard enough, air will flow through me.
And again, with stronger intent: upper right pane this time. Breathe in, hold, and out. In and out.
This is not working. I need more air.
I move my eyes quickly to the lower right square—in-out-in-out . . .
I can’t breathe, I can’t breathe, I can’t breathe.
I heave my body up to sitting and start to cry.
I give in! Gasp. I give up!
I am not brave enough to watch myself die this way.
This is not a choice.
I have to live.
I have to try for this retransplant.
But, oh my God, I just can’t—
I can’t . . .
I know too well what is ahead of me if I move forward with this choice.
I am weeping now as I grab the bolster from Scott’s side of the bed to prop it behind my back. I will sleep sitting up.
And with tomorrow’s earliest sun, I will look through the windowpanes that failed me and hope to find my first name spelled out in the angles of bare tree branches set against the gray February sky. So many mornings for so many years, my eyes found their way to a distinct A, an M, and, less easily, a Y. And when they did, it felt like the jutting branches were holding me up with the power of their centennials, keeping my body from plunging into the depths where old transplanted hearts are fated to go.
But just this morning, I thought I saw the angles connect in new formation as I listened to the rumble roll of Scott’s suitcase fade in the hallway. They said to me, Sorry, Amy, we tried.
* * *
Freshman move-in day at Oberlin College was drawing to a close. Orientation activities for parents had ended, and Scott and I were walking Casey back to his dorm.
Then, suddenly, a whoosh.
A jolt of dizziness.
My heart hammered erratically in my chest, my throat—BANG-BANG . . . BANGBANG . . . BANG—but I kept walking.
I didn’t want Casey to see.
We reached the dorm lobby, and I whispered to Scott as he held the door for me, “My heart’s not right. I’ll tell you in the car.”
Then there were three flights to climb to Casey’s room.
Oh please, oh please, let me make it there.
I didn’t know to what or whom I was pleading.
Halfway up, I had to wipe my forehead; I shouldn’t be sweating like this.
“I love you, my Caseyboy,” I heard myself say once we reached the third floor lounge and I hugged him close. “I’m so proud of you.”
Scott went in for his hug—and we were off.
To the nearest hospital.
I called my transplant doctor in New York on the way, and he said there was a good hospital in Cleveland, and yes, I should go there immediately. He didn’t doubt me when I told him, “This is not a case of college-drop-off-day emotion.”
“You’re no hypochondriac,” he said. “Go to the ER.”
Once Scott and I had driven beyond the mob of parents and kids saying their good-byes, I could let the tears come, finally. “Whatever this is, it’s bad . . .”
And I was right.
Something changed in my heartbeat that day, and it terrified me—though not because I saw it as the clear harbinger of my heart’s demise; I wouldn’t come to realize this until years later, when I was able to look back and put together the pieces that would show themselves cryptically, little symptom by little symptom, from that day forward.
No, the fright of this moment on college move-in day was due to the eerie actualization of an imagining I’d been pushing from my mind while packing up Casey’s bedroom: that my heart might sense his departure for college and, noting the elapsed urgency of keeping a mommy alive for her no-longer-young son, wind down from super-survival mode.
Crazy? What was crazy was that I was alive to see Casey enter college.
I had only five years of predicted life expectancy left when Scott and I adopted him as an infant. But there hadn’t been any trace of deathly transplant disease in my donor heart at that time, and my doctor seemed to indicate that I’d moved past the most dangerous early post-transplant period, saying things like “Who told you only ten years?” (he did) and “You could very well be one of the lucky ones who lives two decades or more.” So, Scott and I went into parenthood with sober optimism; perhaps I could live to raise our boy for many years, but in any case Scott would play an exceptionally active role as a father and would take over with confidence as a single parent if need be.
It was a fate beyond all reasonable hope to find myself picking through my eighteen-year-old son’s closet, calling out, “Hey, Case, do you want to take your winter boots now or pick them up at Thanksgiving?” It had always frightened me how much I adored him; I was never able to settle casually into the day-to-day rhythm of mother and son because our time together was too fragile. And now here I was with my boy turned bearded young man. How was it that I hadn’t died when he was in kindergarten?
One explanation: my heart eked out an extraordinary feat of endurance because year after year there was a boy who called me Mommy.
But Mommy had turned to Mom.
And I was packing my nearly two decades of motherhood into cardboard boxes carefully and deliberately—warm quilt (check), shower flip-flops (check), Band-Aids (check).
Even without actually laying eyes upon what Casey and I were doing in his room that day, anyone—or any heart—listening in on our words and to the squeaky sound of package tape stretching over box tops would know what was happening: A young man was leaving home. And his mother was helping.
“I hope my heart didn’t hear,” I said to a few friends when all the boxes were stacked up and ready to go.
I was only half kidding.
“Hearts can’t hear, right?”
Right, they assured me.
And we laughed.
But, just a few days later, preliminary cardiac tests in Cleveland (followed by many more in New York) showed that my heart function had declined—all of a sudden. Significantly.
And it would continue to worsen in small but sure increments over the weeks and months to come. As time passed, the how, why, and when of disease progression became muddled and complicated. Compounded and confused.
But I would never forget where the end of my heart began: with Casey leaving for college.
Coincidence?
Maybe if I’d wound up in an emergency room a few months after his departure, I could have chalked it up to chance.
Even a few weeks’ lag time would have given me cause for doubt.
But to have my heart show its first sign of failure on college move-in day? On the exact day I parted with the son I’d raised to near independence?
I’m not saying hearts have ears, but . . .
Well, maybe I am.