I made the transplant pharmacist cry. Becky (I think her name is) scurried out of my room a few seconds ago, distraught, and Scott—always the good guy—went after her to apologize.
Sorry that Amy can’t just let it go, he’s probably telling her in the hallway right now. Soon, I suppose, he’ll step back in here with a disappointed frown, saying, You could have handled that differently, and I’ll have to respond—a challenge I’m likely to flub, because while, yes, I could have taken another tack with Becky just now, the quiet truth is I’m sort of glad I didn’t.
Not that I meant to draw tears from her; she has been nothing but well-meaning while standing among the horseshoe formation of transplant-team white coats at the foot of my bed each morning. But to have just let it go in this situation would have resurrected the submissive, terrified girl I was at the time of my first transplant. Instead, to have the smarts to know when ground is worth standing in a medical setting—and to be courageous enough to stand upon it and speak cogently, even when wearing a hospital gown open to the back—is the mark of a self-assured patient and woman.
That’s how I see it, anyway. To Scott, though, the scene that just took place is simply a manifestation of my going overboard. This means I’ve got about thirty seconds to decide whether I’m going to defend my stance when he steps back in here to challenge it.
I asked a question about vitamin C—that’s what started this whole thing. Becky was nice enough to remain behind to answer it after the heart transplant cadre moved on to the next patient room. “Happy to check for you,” she said, and started clicking the keyboard on the Cedars staff computer mounted beside my bed. She asked to see my hospital bracelet to scan in my patient ID, and instead of offering her my wrist I recited the number from memory: 601 056 2852.
“Never seen a patient do that before—kind of cool!” She gave her shag haircut a quick toss, jostling beaded earrings that grazed her neck. I thought she was kind of cool. We engaged in some small talk—interesting décor in here . . . sort of Hawaii Five-0 meets Marcia Brady—until my file came up on the screen. Becky read aloud while scrolling through my medication list, “I see you’re still taking the immunosuppressives they had you on at Columbia. Cyclosporine, Imuran, prednisone . . .”
“Old-fashioned, I know. I’m a relic.”
She had her eyes straight ahead on the screen, keeping up perfunctory conversation while skimming the dense pages. “We’ll be bringing all your meds into the modern age after your transplant. Now . . . um . . . you asked me about whether you can take . . . Oh, wait a minute . . .” She zooms in on some words that elicit a big smile. “Ooh, I see that you’re going to be part of our eculizumab study . . . wonderful!”
“Ecu-lizumab?”
“Yeah. Name’s a mouthful, right? I don’t blame you if you can’t pronounce it. I’m talking about the experimental treatment for your antibodies. You’re going to be part of our NIH study.”
What?
I’d heard a little bit about the study from Dr. Kobashigawa a few days earlier, and someone from the Cedars medical research team dropped off a thick binder filled with detailed information for my review. But this intravenous drug with the mouthful name was a chemotherapy of sorts and had serious side effects, including a significant risk of meningitis. Were I to participate, these treatments were not imminent (they wouldn’t kick in until the time of my transplant surgery). But I had already undergone another potent antibody remedy when I first arrived in California (bortezomib) that posed a risk of blood infections and death. The bortezomib treatments involved a series of direct injections into my belly and many of hours of antibody-cleansing plasmapheresis (plasma removal and replacement) through a thick catheter in my neck. Last I heard, though, the post-bortezomib state of my antibodies was not much better than before treatment; my chance of matching with a heart donor still remained at an inauspicious 14 percent. Feeling fortunate, though, for having at least evaded the dangers of bortezomib, I was not eager to risk another go-round with a second type of antibody treatment—especially an experimental one.
“You’re sure my name is on the study roster—already?” My voice rises.
She pecks at the keyboard, double-checking. “Yup, here you are!”
I jolt upright in bed. “But how can that be? I haven’t said yes!” Pressing my palms against my temples, I begin to reel. “I can’t believe this! Am I being steamrolled into the study?”
“No, no. But the team has decided—”
“The team? I’m the one who’s supposed to choose.”
“Of course you are, but—”
“I have a voice!”
“I didn’t mean to make you feel—”
“Just because I’m . . . sick . . . it doesn’t mean I don’t . . . have a say!” I’m choking on emotion now. Scott steps toward the bed and puts his hand firmly on my shoulder—Easy, let it go . . .
Not a chance.
Becky just stepped on a land mine twenty-five years in the making. But she can only see the explosion, not its underpinnings. Deep down there are a hundred hard lessons woven into the fuse from my transplant decades. I can’t help but be lit by memories—sometimes so many of them combusting at once, I can’t tell for sure which one struck the match. But here this morning, I get the sense that one culprit in particular—the earliest in my medical history—may be both the instigator and the scorching eternal flame.
I’ve come to think of this particular memory as the strawberry shortcut—a lesson that came by way of a pulmonary lab technician who said playfully, “Let’s take the strawberry shortcut,” when escorting me from the waiting room to the exam suite. It was 1988. I was in my second year of law school, and my doctor wanted to rule out all possible causes of my very apparent breathlessness. Heart problems seemed so much less likely than lung problems in a woman in her midtwenties, so he scheduled a progression of tests that began with pulmonary.
As I followed in the wake of the technician’s perfectly pressed white coat, turning and turning again through a seeming maze of narrow hallways, he called back to me over his shoulder a preview of what was to come. Apparently, I would soon be breathing in some—particles? Nuclear particles? I didn’t understand—I’d never had even so much as a strep throat culture in my twenty-five years of life—so I obeyed with some trepidation when he placed the clear plastic contraption over my mouth, nose, and a good portion of both cheeks. “We’re friends here, aren’t we? So just relax into it and breathe deeply,” he cooed, and I tried. But there was nothing about inhaling the particles he administered that made me feel friendly or comfortable. He noted my reluctance at once. “Oh, you’re going to have to go deeper than that, pretty,” he said.
Pretty?
My stomach muscles tightened with angst. I began to shake.
“In . . . and out. In . . . and out,” he coaxed, moving his face closer with each round of inhalation and exhalation until his lips and the tip of his nose were in line with mine, pressing up against the plastic.
I closed my eyes and I felt some tears fall. I’m trapped. My doctor can’t make me better unless I do this test. I’ve got to get through it. Come on, Amy, breathe . . .
“That’s it . . . niiiice,” the technician purred. “And again, for me . . .”
When the test was finished, I hurried off the exam table. “Hey there,” he said, reaching for the door handle before I could. “How about a kiss for the technician?”
“How about a handshake instead!” I snapped, surprising him with a sudden show of nerve. He murmured something about a hot tamale and grasped my hand.
A few days later, I filed a complaint with the hospital and was told there was nothing they could do since I didn’t remember the tech’s name. And besides, they told me, “Maybe he was just trying to help you relax.”
That was the start of my growing a backbone as a patient. Hell, if the same thing were to happen to me now, I’d respond directly with, Kiss? How about you kiss your job good-bye!
Fifty is so much braver than twenty-five, you see.
Though today’s situation was quite different, it preyed on some of my greatest medical fears, those that had developed out of the strawberry shortcut incident and countless others over the years: feeling a lack of agency, feeling uninformed, and feeling taken advantage of. And this is why I felt no trepidation this morning when telling the transplant pharmacist that I wanted to speak with her supervisor: Dr. Kobashigawa. She logged out of the screen at once and backed away from the computer. “I’m sorry to see you so upset about this.”
“And I’m sorry for these stupid tears, but I can’t help it. I’ve learned the hard way never to turn off my brain and hand myself over. I’m not going to agree to ecu—whatever it’s called—without reading through the whole binder and making my own decision.”
“I understand. But keep in mind we’re just trying to help you, Amy. You’ve got antibodies that are going to pose a danger to any donor heart you might receive. You can’t be transplanted successfully without eculiz—”
“I can’t? Are you saying I don’t have choice? That I never really had a choice? Who told you that? Dr. Kobashigawa?” My fingertips fly to my forehead and I begin tapping, tapping. A rush of panic sweeps through me—Have I been duped?
She started toward the door, pulling nervously at the ends of her hair. It was apparent that Becky had let on more than I was meant to hear just yet, and that perhaps she might be in trouble for it. “I’ll, um, ask him to come see you.”
But the memory match had already struck and ignited. All of a sudden there were words in the air—my words—and they rang calm and clear at first, but then echoed back to me calamitous and full of smoky black, as if tethered to distant fires. Whatever I was saying was not of this moment; it was cumulative—and ablaze: “Wow, Becky, wow, wow, wow. As if I didn’t feel out of control to begin with, watching my pulse disappear day after day. Thanks a lot. You sure know how to make a dying person feel worse.”
“That wasn’t my . . . Oh, I am sorry!” she squeaked with panic, tears welling in her eyes. She quickly turned away and slipped out the door.
“I made the transplant pharmacist cry.”
Val nods a few times in realization. “Ah . . . now I get why Scott was all—”
“Yeah.”
She didn’t understand at first why he greeted her with a brusque good-bye when she arrived from the airport a few minutes ago. “Great. You’re here. Now I can go get some work done,” he huffed, gathering up a mess of folders and papers. Val stepped to the side as he brushed past with his briefcase unzipped, half hanging off his shoulder. Just short of the doorway, though, he bumped up against his better nature and rebounded from his uncharacteristic rudeness. “Uh, sorry,” he said, pivoting to look at Val directly, “I’m in the middle of a work thing. But thank you for coming, thank you! I gotta run—” He was out the door before she could respond.
Val pulls what looks like a bag of chips from her purse now and tosses it on my bed. “So—how bad did you give it to the poor pharmacist?”
I pick up the bag and read the unfamiliar label. “Okra crisps? Seriously?” I open it and crunch into a small, crispy circle. “Not bad—I mean the way I laced into the pharmacist lady wasn’t too bad. These chips, however, are yuck.”
“How about cashews, then? Take some—they’re organic! Or dried cherries? I’ve got apricots too . . .” She pulls out plastic ziplock bags full of snacks. She still stocks her purse like an earth mother of toddlers, even though her two sons are grown.
“You’re a walking Whole Foods, aren’t you?” I say.
“Trader Joe’s. And look what else I got there . . .” She unzips her carry-on bag and pulls out a fluorescent-green spray bottle–fan combo as long as her arm from elbow to fingertips. “I’ve got the sweats now—isn’t that lovely? No, it’s awful! I’m dying of heat, whew!” She pumps the bottle like it will save her life. “Oh God, when will this end!”
“Ah, menopause—I guess.”
“I wish it were freaking over already—good grief! You still get your period?”
“Every month. No sweats.”
“Get out of here . . .”
“It’s my easy, breezy lifestyle and healthy constitution—ha-ha.” I pluck a few cashews from the bag and pop them into my mouth, shrugging. “So—the pharmacist . . . she made a big mistake and I jumped on it. That’s all.”
Val wipes her sopping face with the back of her hand. “Jumped—or pounced? You say you made her cry, Ames.” She lifts a couple of snack bags at once and waves them in front of me. “Here, take some more. I plan on getting lots of nutrition into you this weekend. I talked with Lauren the other night, and she told me you’re rail thin. I promised her I’d do something about it.”
Since when do you talk with Lauren?
I’m surprised. Val is not part of my friend group in New York. She was my law school roommate and has lived in Durham for some twenty years now. I don’t remember introducing Val and Lauren at any point, although I suppose they’ve become acquainted through the patchwork of information that gets conveyed when I mention one to the other in conversation: My friend Val’s dog has fleas too—I’ll ask her what she uses or My friend Lauren sent me this article—I think you’d like it. But now, it seems, the spreadsheet has brought the two of them together in earnest; the nightly emails circulated among the group seem to have progressed the few unacquainted women to friends in the making.
“Well, I hope Lauren told you about my ankles and feet. They’re not rail thin.” I yank up the bottoms of my yoga pants. “Get a load of these babies—a neon sign for end-stage heart failure.”
Val gasps. “Ahh!” Pressing her fingertips tentatively against the bloat, she lifts a pained gaze to meet mine. “Oh, Ames!”
“I told you it was bad.”
“And I believed you. But to actually see it—” She shakes her head, stunned.
Val and I aren’t used to seeing the things we describe to each other. The distance between New York and Durham has forced a phone friendship upon us over the last two decades, precluding the in-person interaction that characterized our early years together in the law school dorm, face-to-face for every bowl of breakfast cereal and step out of the shower. And even though we visit every few years and fill in the space between with evening talks (usually with a phone wedged between ear and shoulder while we prepare dinner), the lack of a visual element allows for a skewed imagining of each other that, for better or worse, becomes the reality.
When I hear Val’s voice on the phone, I see in my mind’s eye a twenty-three-year-old curly-haired girl wearing an oversized NYU Law sweatshirt and a smile made of orange peel (she liked to cram a wide slice of it against her teeth and hold it there until I laughed). And then, without warning, the modern-day Val will send a selfie to my cell phone and—what? Long, smooth tresses? “I’ve been doing keratin hair straightening for two years,” she’ll explain. All right—but what’s with the contemporary sportswear look? “There was a sale on cardigan sweater sets at Neiman’s . . .”
Sweater sets? Who is this woman?
But then, the next night, the familiar voice of my old friend will return in customary form—without an accompanying photo—and we’re safely back to the land of phone conversations while we sprinkle paprika and garlic salt on our respective chickens, chatting nonstop as we push them into our ovens to roast. “Please tell me you bought organic . . .” Val implores before starting up commentary on my vegetable side dishes. “. . . or else you’re eating all those hormones and antibiotics!” That’s the Val I know so well—by sound and syntax, and by the routine clobbering over the head for my blasé attitude toward poultry selection. Talk, listen, talk, listen—all is comfortable between us again.
Now, for the next three days and nights, there will be no telephone to ensure a safe distance between the visual on either end of the call. Here in the hospital, Val and I will have to open our eyes to a friendship that has relied almost exclusively on open ears. I’m a little apprehensive about how we’ll do with the change.
“I feel a little woozy,” she tells me, withdrawing her hand from the purplish bloat that consumes my anklebone. “Mind if I cover your feet back up?”
“Of course—sorry. Really.”
She lowers herself into a chair and launches into another water-bottle-spraying frenzy. “Whoa, sorry, but I might have to put my head between my legs for a few seconds. You know how I get . . .”
I do. After years of Val reporting to me episodes of near or full-out fainting, I figure she suffers from something I’ve heard doctors call reactive blood pressure, whereby a strong, negative emotion—dread, alarm, disgust, or being just plain grossed out—can easily send her to the floor. A few months ago, she called me to lift her out of embarrassment following a simple blood draw at her internist’s office that nearly necessitated smelling salts. “It happened because I didn’t eat anything in the morning,” she insisted (Val believes strongly that food is the answer to most body ills).
I offer up some of her own medicine now. “How about a few dried cherries? The sugar might help.” I put my hand on the back of her bowed head and stroke her hair.
“I’m good, I’m good,” she assures me, lifting her head and smiling. “I’ll be fine in a minute. Now—let’s talk about that pharmacist.” She pushes a few cherry bits into her mouth and gestures for me to sit in the chair beside her—a request with attendant risks that she can’t anticipate. Val doesn’t yet know that when I sit in a chair (feet toward the floor, torso upright), every one of my toes turns gunmetal gray from oxygen starvation.
“Let me just put on some socks first,” I say, taking precautions so my friend won’t swoon twice. I sit down beside her and begin to re-create the dialogue from earlier this morning.
“So then the pharmacist tells me, ‘Sure, I’ll check about the vitamin C . . .’”
Val listens for a good long while, closing her eyes and pressing her lips together when I switch to a reedy, high-pitched imitation of Becky’s voice.
“‘Only trying to help you, Amy . . .’” I chirp.
“She probably was trying, although she messed up pretty awful in the delivery,” Val says. “But please, continue. Sorry to interrupt.” She reverts to all ears, relaxing back against her chair and extending both legs to rest on my bed. Her hands lie palms up in her lap, and she’s smiling serenely, as if settling in with a good book.
We have time in this hospital setting. Unusual, uninterrupted time. Full days and nights of no cricking our necks to balance the phone while we chop garlic. No children needing our attention or husbands walking through the door after a long workday—automatic trump cards that, for both of us, result in an immediate I gotta go . . . Now it’s just us: two friends who haven’t had much opportunity to spend an unhurried half hour together in twenty-five years.
But as firmly planted as we are here, and as slow and easy as the moments feel, there is an unspoken awareness of our time together being limited in a different way from ever before. It is not life that will cut our conversation short this time but, rather, the possibility of death. The hourglass is filled with quicksand.
I finish the pharmacist story with flourish: “And then—cue the organ music—Scott shoots me a look—da-da-DAH!—and dashes into the hall.”
“Okay. So . . .” She sits up straight and looks at me directly. “You were supposed to read through the materials and then make a decision about whether to do the antibody treatment. Then the pharmacist essentially says that the choice had been made for you—so you react. Nothing wrong with that, although . . . your line about making a dying person feel worse was a little, shall we say, over the top?”
“As I see it now, yeah. I’d take it back if I could—”
“But you can’t. And now Scott’s mad at you even though, really, you were just sticking up for yourself.”
“Exactly.”
“And you lost your cool because, when it comes right down to it, you’re trying to save your life. Sounds a lot to me like the angiogram you had a few years ago where the doctor screwed up, and you said to him—oh my gosh, what you said to him! Scott was so upset with you, remember? But I understood . . .”
She did—and better than anyone else, perhaps—because Val possesses impressive insight and empathy into the problems of others. It also helps that she is married to a doctor. When I shared with her a quick overview of the angiogram mishap, she called out to him, “Jeff! What happens if lidocaine gets shot straight into your vein by accident?”
“Who’d that happen to?” I heard him answer.
“Amy. During her angiogram at Columbia.”
“Dangerous stuff. She could’ve stopped breathing, or her heart could’ve—”
Val became abruptly light-headed. “That’s enough, Jeff, whoa! I have to sit down—nauseous, nauseous!” But nevertheless, she urged me on, “So, you’re in the procedure room and . . . ?”
“The doctor figures he’s just numbed up my groin area with lidocaine, like he’s done for my other angiograms. But all of a sudden my lips go numb, and then my tongue and my chin and my ears—can’t feel ’em. And I’m dizzy and slow, and it’s too much effort to breathe, so I call out, ‘I can’t feel my face—I think something’s wrong here,’ but the doctor and the resident and two nurses don’t respond. I call out again, ‘Hello! Something is very wrong!’ And now they’re scurrying—blood pressure monitor squeezing my arm, oxygen tubes under my nose—but no one’s saying a word to me! I’m lying flat, right, because I’ve got an angiogram plug in my femoral artery, so I can’t sit up and look anyone in the eye. I shout, ‘Am I dying?’ and still, no response—everyone’s glued to the EKG monitor. And I realize, holy shit, it’s getting harder to form words—like my mouth isn’t working or something! So I force myself to get super calm and focused—’cause I’m thinking this might be the last thing I ever say—and I put it to them loud and clear: ‘Someone—tell me right now what is happening here—because if you don’t and I wind up dying on this angiogram table, I swear—I am going to haunt every one of you—and you’ll never sleep again—you’ll be in bed at night and hear chains dragging across your ceiling, and it will be the ghost of me . . .’”
Val gasped. “You didn’t!”
“I sure did. And you know what? That doctor zoomed right over and said sorry—told me he’d shot the lidocaine straight into my vein by accident and was going to watch me very closely until my body absorbed it.”
“That’s the least he could do, the jerk. But, Ames, the I’m going to haunt you—ha! You must’ve freaked out everyone in that room—scared the hell out of them.”
“I sure hope so. But Scott said it’s out of line . . . and that it doesn’t help in stressful situations when people are working on my body and I add extra pressure into the room. He’s right.”
“Yeah, but look—those people acted terribly. You felt like you were going to die—you could have died! And they just kept ignoring you when you called out to them. You were not your best polite self in there, okay, but I get why you said what you said. You were scared beyond comprehension and you wanted everyone around you to feel some of that terror for themselves.”
She had put words to my motivation before I could make sense of it myself. Thanks to her husband’s medical input, she appreciated the direness of an errant lidocaine injection. Val has also seen more than her fair share of alarming medical sights while caring for close family members who had battled serious illness over the years—including her father, her husband, and her son. But there was something else that heightened her empathy as well—a difference between Val and my other close friends (and even my husband) that allowed her to plunge beneath the surface and come up with exceptional insight into my reality, time and again: her sensitivity to the unreliability of appearances.
“That pharmacist probably took one look at you in your cute jeans and T-shirt, with your hair all nice and those terrific arm muscles you’ve got going on there—and she lost her bearings,” Val says. “You’re too thin”—she nudges the cashew bag toward me—“but you don’t look sick, Ames. And that’s a problem, because everyone around you, even medical people, forgets all you’ve been through. I mean—everyone even forgets the double mastectomy you had just a couple of months ago!”
“You don’t forget.”
“You’re right. But I’m in a unique position. Think about it—after the lidocaine fiasco, we spoke on the phone, that’s all. I was in Durham, so I couldn’t meet you for coffee the next day, like maybe Lauren did. I didn’t see you sitting across from me in your workout clothes, looking perfectly well when you told me that the doctor screwed up and shot lidocaine into your vein. No, I only got to hear you—that’s all I ever get to do. I’m never thrown off by the way you look, so I have a whole different perspective on what a week is like in your body.”
It’s our evening phone calls that have made this possible. Val is my only friend who will notice just how many trips I’ve made to the hospital over a short time period. “You’re never well,” she’ll note with sadness, whereas another friend may see me at the supermarket one afternoon and rave, “You look great!” As it turns out, an accurate perception of our friends’ lives depends more on consistent, careful attention than geographic proximity. The many miles between Val and me—I recognize now more than ever—are a limitation that has actually broadened and deepened our friendship. We understand each other better when the life stories and emotions we share are stripped of momentary appearances. Saying I see—and meaning it—requires a commitment of more than just the eyes, and Val and I seem to have made this commitment. Our listening feels like honoring.
“Thank you, Val!” I blurt out, overwhelmed by a surge of emotion. The years of closeness between us feel desperately precious all of a sudden. How fortunate I am for this friendship—and for all the friendships that have shown up in the chair where Val sits today.
The things I love about these women flood my awareness now—Jill’s constancy . . . Lauren’s intuition . . . Joy’s enthusiasm . . . Leja’s determination . . . Jody’s kindness . . . Val’s insight . . . Is it a wonder we’ve grown so bravely and beautifully along the timeline together from twenty-five to fifty? Friends are powerful growers; they’re the earth and the sun and the water. What—what—will I do without them when my heart can’t wait for its replacement anymore and all goes dark?
“I’m so grateful for our friendship,” I cry, reaching out my arms toward my dear friend Val. She receives an embrace meant for many.
We’re still in a tight hug when Dr. Kobashigawa comes in with his trademark “Hello, hello.” He shakes my hand and then Val’s, and sits in the chair opposite us, frowning gently. “I heard what happened with our pharmacist, and I—I’d really like to apologize. I was supposed to talk with you first, but things don’t always happen in the order they’re meant to. I take responsibility.” He closes his eyes in a long, sorrowful blink.
Val’s face lights up with awe. She’s not yet familiar with the compassionate Cedars way, having heard for almost thirty years about the gruff treatment I received at Columbia, where my transplant doctor spoke to me in surly sentences that neither began nor ended with a kind word or handshake.
Dr. Kobashigawa goes on to impress her with a candid explanation of why I will need a series of eculizumab treatments (“Your antibodies are still considerable”) as well as why I should be aware but not afraid of the risks involved. “It has been used very successfully and safely in kidney recipients, and now we’ve got a grant from the National Institutes of Health for a trial with heart transplant patients at Cedars. I think you will tolerate the treatments well—it is considered chemotherapy, yes, but not the kind you’re probably thinking of. Basically, eculizumab is a complement inhibitor and monoclonal antibody . . .”
Val’s eyes go wide. “Huh?”
“That means the eculizumab will inhibit my body from binding complement so I’ll be less likely to have an antibody-mediated rejection,” I say. I’d made my way through enough of the eculizumab binder to understand and memorize the drug’s basic mechanism.
“I have no doubt you understand, Amy.” He gets up from his chair and says to Val, “Your friend here is pretty sharp.”
“I know. I was her law school roommate!” She smiles dreamily at the back of the doctor’s white coat on his way out. After he’s cleared the door, she grabs her spray bottle and presses the button that powers its fan attachment. “Aaaah . . .”
“I’m going to apologize,” I tell her.
“To Scott?”
“No, the pharmacist. First thing tomorrow morning.”
“Good. And don’t you think Scott also deserves—” She falls abruptly silent, leaning onto her elbow and dropping her chin into her hand. “Never mind. More cashews?”
From: Valerie Yablon
Subject: Just for you two
Date: April 22, 2014 at 7:36 PM
To: Lauren Steale, Joy Ceterra
The guard has surely changed; Joy, you are a tough act to follow. I have to say, Amy looks amazingly well. It’s hard to believe from looking at her that anything is wrong.As for me, after two full days and nights without leaving this room, I am surprisingly fine. If I had to function in my real life I wouldn’t be, but since I am focused only on Amy, little sleep is ok. I do feel rather helpless, though. Dr. K came this morning and acknowledged several times that Amy is very sick, saying he will keep his fingers crossed for a donor at the soonest—perhaps this weekend. Amy picked up on that and it made her feel very scared.Oh please let it be tonight, as she won’t tolerate too many more days like today.She begged me to put a pillow over her head right before she drifted off to sleep a few minutes ago. And poor Scotty, he got the worst of it today.Leja returns tomorrow—a great help, for sure.
xo
It’s the third and final night of Val’s visit, and she’s determined to do something about my complete lack of fresh air. The large picture window to the left of my bed doesn’t open, and I’m not allowed to take the hospital elevator to the lobby and step outside—not even for two minutes—because, as Dr. Lunchbox explained, it would require accompaniment by a nurse and a doctor. “What if you had a cardiac episode?” he warned. “It’s too big a risk.”
“It’s not exactly healthy for you to be cooped up in this room either,” Val harrumphs, getting up from her chair. “I’m going to do something about it right now!” She perches on the windowsill and then stands up to inspect a smaller sliver of window that is set way up above the larger one. It turns out to be casement style, which suggests that a shift of its handle may pop it out sufficiently to allow a few inches of open space. “Aha! Watch this!” She tries again and again to crank it open. “Could they make this any harder!”
“It’s probably against the rules, Val. And hey, you’d better speed it up before Justin gets in here. Medicine’s at ten . . .”
“Grrr, arhh!” She strains, pushing and pulling, and then, creak-thump, it opens. “Good grief!” Val exhales, squatting down and descending the ledge shakily. She stands with her hands on her hips, catching her breath for a few seconds.
I laugh, applauding. “You know I love that good grief thing. I mean, who says that? Only you, Val. And only you would think to climb your crazy ass up there to open that window.”
“Six weeks without a breath of fresh air? Yeah, I’m climbin’, all right!” She waves me off with her hand. “I wanted to be sure to leave you with at least one concrete improvement before I go home tomorrow.”
I guess she doesn’t see the indelible marks of her presence as I do. Val certainly has made changes here, just as the others did before her. She has contributed a definite New Age sensibility. There’s the lavender spray bottle, which she set upon my night table for a quick, calming aromatherapy pssst during pacemaker firings. Next to it sits a Tupperware container filled with sand from the Santa Monica shoreline—gathered and transported by Jody, who, after meeting Val for the first time two days ago and asking if there was anything she needed, found herself complicit in Val’s holistic prescription that sand play is so therapeutic!
There’s also the cautious, germophobic edge she brought on board. It started with the cheap bedroom slippers she’d purchased specifically for this trip, as Val wouldn’t dare touch her feet to the presumably bacteria-ridden hospital floor. In the same vein, the cot’s surface gave her the creeps due to the incalculable number of strangers who had slept on it; after cringing through her first night of sleep, she resorted to putting an air mattress on top of the cot, thereby creating a double-decker bed.
Truth be told: I’ll be glad to see the double-decker sleeping arrangement disassembled after Val leaves; the rub of the air mattress against the plastic cot cover sounds like a giant balloon animal being made over and over again, all night long.
But I am also going to miss that squeak; it reassures me that it is Val specifically who’s there in the darkness, ready to fly to my bed and nurture me through the pain like no one else. She has a different approach to laying hands—I don’t know if it comes from the way she’s mothered her two sons or if it’s just her natural response to a demanding new circumstance. But her technique has turned out to be surprisingly affecting. Rather than sit beside me on the bed, she slides behind and stretches out her legs on either side, straddling me like a Lamaze birthing partner or a yoga teacher with very loose boundaries, saying, “Breathe, breathe.”
It felt awkward at first—more so than Jill or Joy or Lauren sitting at my side, rubbing my feet or stroking my back. Even those moments felt uncomfortable at first because they broke through the quick hug-and-kiss boundaries we were used to. But after the second or third time that Val climbed boldly into position, I felt a complete enveloping. It was all-in and steadfast, and it relieved my concern that the sixth or tenth pacemaker firing might wear out her support.
And with Val sitting directly behind me, I could be spared the look of distress I’d seen on the faces of friends who’d preceded her. Val couldn’t keep watch over the EKG monitor from where she sat, but she didn’t care to; counting the seconds or testing my ability to predict the cessation of each painful wave was not her way. Val’s approach had its own focus and daring—she grabbed on and held me steady through every second of trepidation like a skydiving guide in a tandem jump, landing me safely again and again.
She reaches into her suitcase now and pulls out a toiletry bag and hand towel. “Just use my bathroom—it’s fine,” I tell her. “I’ll suspend Joy’s rule since it’s your last night here.” I imagine that using the visitors’ bathroom in the hallway has been a disgusting challenge for her.
“I accept!” She smiles and shuffles her slippers across the room.
A text pops up on my cell phone—ting ting!
“It’s Casey. He says he’s going to FaceTime me in a couple of minutes,” I call out over the sound of running water.
Val pops her head out of the bathroom, toothbrush in mouth. “Good! Good!”
“I gotta doll myself up a little,” I warn. I pull off my pajama top and replace it with a lilac shirt, then head to the bathroom to put on a little blush and fix my hair. “Pardon,” I say, edging in on the mirror while Val flosses her teeth. “Can’t let Casey see me looking sick.”
“You don’t look—” The FaceTime tones ring out.
“I hope you’re right!” I retrieve my laptop from the bed and sit in Lauren’s chair by the door so there won’t be an EKG monitor in the background. I try to catch my breath before answering the call. “Hi, Case! What’s up?”
We chat about his classes, his weekend plans, the weather in Ohio. I take care to smile and keep things light, and Casey follows my lead. We know no other way; he’s been raised on normal appearances despite serious illness. I tell him Val is visiting and turn the laptop in her direction—“Wave to Casey, Val!”—and soon we wrap up with a quick “Miss you!” I feel a cry lump rising up in my throat, but I fend it off abruptly with a happy good-bye. “Oh, and Case,” I add, “I’ll be out of here pretty soon. The doctor says I’m at the top of the list now.”
“That’s great, Mom.”
“And when school lets out in May, you can come and hang with Dad and me. I’m going to have to stay in LA for a couple of months after the surgery.”
“Sounds good. Love you.”
“Love you, Case. Bye.”
Val makes a sad face at me, standing in her pajamas and puffing out her lower lip before climbing onto the double-stacked bed. “I miss him so much,” I tell her, deflating after my strong-mom act. I change back into my pajama top.
Val sighs. “You take very good care of him.”
“I can’t, really, from this hospital bed.”
“No. What I mean to say is that you spare Casey—a lot.”
“Yeah, I do. I always have. And I’m not going to start clobbering him over the head with my illness now.” I pull the string that hangs above my night table, and the lights go off. I settle under the covers while Val squeak-squeaks her way into a comfortable position. “Okay, then, good night, Val,” I say.
“Good n— Hey, can I just point something out? You okay to stay awake a few minutes?” Squeak-creak-squeak—it sounds like maybe she’s shifted onto her side to face me. But I can only see her vague silhouette in the greenish glow of the EKG monitor.
“Sure.”
“So—you got dolled up for Casey’s FaceTime call, right? But when Scott brought dinner here for us tonight, well, let’s just say you didn’t get so dolled up or spare him how sick you feel—just the opposite.”
“It’s too much effort to look good, especially at the end of the day. And I don’t have to hide things from Scott.”
“Don’t you? Just a little bit? And this isn’t just about how you look—I would guess that Scott doesn’t really care if you put on nice clothes. But you could make an effort to watch out for his feelings sometimes, you know? Like with the pharmacist. You apologized to her. But with Scott, you dug in deeper.”
“I wanted him to understand my position.”
“I have to tell you, Ames . . . a little less understanding might do Scott some good. You can keep your thoughts to yourself sometimes and just spare him. You know? I don’t mean to overstep . . .”
But Val has just taken a sizeable leap—straight into the center of my marriage—and I think it’s no coincidence that she’s waited until nighttime to do it. Here in the darkness, we’ve returned to our familiar place of unseeing, where honesty commands less daring. Husband talks are often limited to poking fun and sparking lighthearted commiseration (He’s standing in front of the refrigerator saying “I don’t see the milk,” and it’s right there in front of him . . .); when they do turn serious, taking the husband’s side in a conversation with a friend—be it Val or anyone else—is almost never done.
But the rules of husband talk can be broken here in the hospital room. In the seclusion of this magical space with its long, long hours of privacy and its now-or-never sense of time, all limits in subject matter are off. Propriety shifts. Convention turns useless. Friends come to see quickly that the bright spot in the dark of this room—and what makes the best in each of us shine within it—is complete openness and honesty. Within these unusual walls, it is what we fail to say (or share, or admit, or raise) that will likely lead to regret—not the opposite.
Val is the latest to break through the unspoken friend boundaries. She’d only just shaken off the residual anxiety of a year of medical hardships—including the death of her father and a surgery for her husband—when my heart took a fast turn. And now Val is back in a hospital room without mobility, sleep, and fresh air, her short-lived sense of peace again interrupted. There isn’t much for Val to gain in this visit—except time alone with me and, perhaps, coming away with a sense that she’s made a positive difference that may continue on after she goes home. How can I be upset with her, then, for trying to leave her mark in any way she can? Veering into husband territory is not all that different from her insisting on cashews or lavender mist bottles or straddling back rubs. Val means to heal me.
“If you just spare him the littlest bit, it would be so appreciated. Believe me, I should know,” she says, “because I’m on the other side of it with Jeff. I’m the caretaker. And sometimes, I get furious with him just for being sick—again.”
For longer than I’ve had a heart transplant, Jeff has had colitis.
“I wouldn’t ordinarily say this out loud, but I’m going to tell you anyway so maybe you can understand Scott a little better. I know, of course, that Jeff is the one who’s suffering when his flare-ups strike, and I feel awful for him. I love him so very much, and I’m glad to be there for him every minute. But when his thoughts get revved up and he wants to tell me all the terrible things that could possibly happen to him in the future because of his condition, sometimes, I just wish he’d keep his fears to himself. Because there’s nothing I can say to make things better. And I think that’s how Scott feels. It’s twenty-six years you’ve been sick. You exceeded your life expectancy by a crazy mile. Scott is scared enough of losing you without hearing every little thing that pops into your— Uh . . . I don’t mean to say little thing. They’re horrible things, and very real—for you and for Jeff.”
“But we’re supposed to keep them to ourselves.”
“Not all of them. Just some. And any time you can take Scott’s feelings into account, you know, smooth things over—like after you made the pharmacist cry—you should do it. You’ve been sick almost since the day he met you . . . The guy is tired. And I understand those feelings, of course . . .”
I had the chance to see Val’s exhaustion firsthand a few years ago when Jeff wound up with a dangerous infection after a routine surgery. At the first sign of Val’s readiness to accept my help, I flew to Durham and I found Jeff in a terribly weakened state; he needed Val’s constant assistance as well as her tending to his IV antibiotics every few hours. She cared for him with diligence and grace until day’s end, when she ran out of energy and abundant patience, wearied from medical detail as well as preparing breakfast, lunch, and then dinner according to his needs and expectations. We joined Jeff at the table and then sat in tense silence as he picked through his food and struggled in obvious pain through each bite. “Val, more water,” he demanded with uncharacteristic abruptness, pointing to his empty glass.
She flushed crimson. “Do you think you could say please? Or, better still, could you just get up and get it yourself?”
Jeff could have managed both. But I understood how, in his arduous state of healing, he could be more focused on his own needs than on ways to give Val a small break. “I should have just gotten the water for him,” she lamented later that night. I didn’t know how to respond to her at first; I thought Jeff’s tone was jarring—but also familiar. I’d heard the same in my own voice many times when frustration and agony won out over gentleness and considerateness.
“You’re loving and wonderful to Jeff,” I told her.
She’s squeaking around on the double-decker bed now, and the light of a just-opened iPad illuminates her face for the first time tonight. She turns to look at me. “You gotta start sparing Scott a little. I saw it in his eyes, he’s spent. And here’s the last thing I’ll say, and then you can go to sleep and I’ll write this email: patience for a child is unlimited . . . but for a spouse, it’s just not.”
Val had great aim. Her words hit me right where she intended: smack in the center of my soft spot for her younger son, Sam, who, at two years old, underwent brain surgery. Her immense determination and maternal stamina not only nursed him through recovery from major surgery, but also has been a health-giving constant over the sixteen years since then, during which time Sam overcame obstacles to become a varsity athlete and scholar with acceptances to some of the best colleges in the country. Val and I spent many hours over the last few days talking through Sam’s choices for next year and making comparative lists. What a joyous undertaking for us, and an attestation of Val’s limitless devotion to Sam and his every need.
“You’re exactly right,” I say, turning on my side to face her. I feel thankful for this rare exchange with my friend. It’s not marital advice that she has just given me; it is life wisdom of the sort I don’t hear from other friends. Val is the only one in my inner circle who lives every day with the constant specter of medical problems in her home. Even though she’s not sick herself—“How can I get sick when I have to take care of everyone else?” she has joked—Val’s nearness to illness makes me feel joined to her. She has had to turn medical challenges into insight. She finds little peace in the passing of time. She understands the permanence of memories and the scary possibilities rooted in the medical histories of her husband and son. How could she not believe in the power of okra chips and coconut water and a single window cranked open a few inches? In her presence the last few days, I myself have been thinking about hummingbirds, and allowing my mind to mull over Ena’s pronouncement that God is everywhere. If hopeful imagery takes the place of rational thought at times, that’s fine with us. We’re both just doing the best we can.
But now I have to start doing better.
I pull the string beside my bed and the light comes on. I shift myself into a sitting position and take a deep breath. “I don’t know where to start with Scott,” I admit. “There’s so much I’ve done wrong.”
“Well, just keep his feelings in mind and go from there. I’m sure there’ll be plenty of chances for you to do things right.”
“Yeah. Remember we used to say that when our boys were little?”
“What?”
“More chances to get it right. Like when Casey dropped his Popsicle in the park and he screamed his head off and wouldn’t get out of his stroller and play—and these mothers are looking at me like, Can’t you control your kid?—so I bought him another Popsicle just to shut him up? Bad lesson to teach him. Bad Mommy moment. And you told me, ‘Don’t sweat it—wait a few hours, and Casey will give you another chance to do it better.’”
“That’s right! Oh, our boys gave us chances all day long.”
“And that’s why we were such great mothers!” I’m smiling now, but I feel my chest starting to tighten. The heaviness is setting into my arms and shoulders. “Val, sorry, I think the pain is starting . . .”
She dismounts from her perch at once—SQUEAK!—“I’m on my way . . .” In seconds, I feel her behind me, settled into position. “Scratch, tickle, or rub?” she asks, releasing a few pumps of lavender spray into the air.
The burning is already full force. “Ow, ow—tickle, I think.”
“Okay, good. That’s my signature move. It did the trick for Sam, you know, when they had to go back in about a week after his surgery to relieve the pressure. His head was so swollen, poor baby . . .”
They had to go back in?
How did I not know that?
Where was I during Sam’s long hospitalization anyway? Casey was about four or five years old at the time, I guess; Scott could have helped out with his after-school care. I could have gotten on a plane and flown to help Val with anything she might need—picking up her other son at school, fixing meals for the family, maybe giving her a back rub at the end of the day.
But I didn’t.
Come to think of it, I didn’t even consider showing up to support my friend when her two-year-old son had surgery . . . on his brain.
I was an idiot.
“Should I scratch now?” Val asks. “This is a long pacing, huh? Just tell me if I should change it up.” Another two pumps of lavender.
“Change—” I can’t speak in full sentences once the pain gets this sharp. And since I’ve gotten pretty adept lately at holding back from wailing during pacemaker episodes, the room takes on a solemn, almost meditative silence in between Val’s words and sprays.
Did I even call her when Sam was recovering? Did I send a fruit platter?
No.
I was, what, thirty-three? I’d been close to death myself not too many years before; you’d think I would have known better. But I didn’t. And back when we were twenty-five, Val didn’t either. During the two months her law school roommate spent waiting for a donor heart at Columbia, I think she came to visit only once or maybe twice.
We were the closest of friends. But we were idiots.
Well, not anymore. Life, as it turns out, gave us many more chances to get better at friendship. Thousands of phone conversations later, we knew when to come running.
“Is it easing up at all?” she asks.
“A little . . . It should be over any second now.” I know the timing all too well. “Please, Val . . . go on and head back to your cot . . . get some sleep while you can. You must be so tired. Sorry.”
She maneuvers out from behind me. “Nah, I’m great. Really. I’m happy to pop up again and again if you need me. I’ve totally found the right way to do this—the straddling technique.”
“Yeah, you totally have.”
Look at that.
Look at us.
Doing it the right way.
Extraordinary.
I see it now: this second transplant has given Val and me the chance to return at fifty to the same context that overwhelmed us at twenty-five and thirty-three—and to do it right. It’s like one of those movie plots where you get to go back to high school and live it all over again, this time with a wiser, stronger, better you inside. Near-death, it turns out, provides a ripe background for great life lessons. And each of my friends—Val included—has brought her unique qualities and insights to bear in boldest form, crossing boundaries and taking chances with honesty so that I might spend this hospital-room time in the way Scott had hoped I would—more thankful than bitter, more inspiring and inspired than just plain sad. The drama of illness was going to have its fated path for sure, but the story of how that path would teach and change all of us was ours to play out until—well—The End.
“Love you, Val,” I say once the pain has subsided completely. “And yeah, I’ve got to ease up on Scott—give him a break wherever I can manage it. Thanks for that.”
“That’s so good to hear, Ames. Good night.”
I reach up for the pull cord and give it a yank. The light goes off.
* * *
My silence after the pacemaker implantation was, Scott told me weeks ago, the last straw. I was not to let myself sink to that level of inconsiderateness and misconduct again. He made it clear that there could be no more.
No. More.
But then I ran out on Jill inexplicably on mud-mask night.
And I sent the pharmacist sobbing out the door.
And in between those episodes, there were about half a dozen other lashings out—as Scott saw them to be—where I acted like someone other than the Amy he knew and loved. On these occasions, I would lose all grace and kindness, and whirl a path of destruction through the room—with barbed responses, barked demands, and ornery musings that started with jabs like So, when I’m dead, and you’re still alive . . .
The night before Val flew home to North Carolina, Scott took me in his arms. Val noticed us curled up on the bed together and took it as a signal to double-spritz lavender over our heads before she stepped into the hall to give us privacy.
“I’ve been trying to think of how I can help you hold on to yourself and not act in a way that hurts you and everyone around you,” Scott began. “And I’ve also wanted to find out for myself how I can deal with it better—maybe talk with someone who’s got expertise in medical crises.”
He said a friend had connected him with a physician and professor at Harvard Medical School who was also the director of an ethics and palliative care department. Scott had spoken with the guy just that afternoon—giving him a comprehensive overview of me and how I’d fared all these years, my medical history, the vasculopathy and pacemaker pain, and the inverted hourglass that was fast draining down on my heart time. He also described the inscrutable lapses in my behavior.
“And, you know,” Scott said softly to me, “I thought he would give me a little . . . uh, support. Some understanding of how difficult it is to stand aside when anger and fear and frustration consume you and, well, make you act like . . .”
“A raving lunatic?” I kidded.
Scott smiled, pulling me in tighter. “Sort of, yeah.”
He told the professor that he’d tried and tried, but just couldn’t understand how his wife could turn so hurtful and belligerent at moments. “If I were sick and dying,” he stated decisively to this professor, “I wouldn’t do that.”
The professor answered at once, “You don’t have any idea what you would or would not do. No one can know until they’re in it. Don’t kid yourself.”
Flat out.
I turned my head to look at Scott—his face was wide-eyed wonderment. The words struck him still.
“The guy had absolutely no empathy for me,” he admitted. “And certainly no sympathy. Not even praise for all the patience I’ve shown you. He just put me in my place, all right. ‘You don’t have any idea.’ And I thought—huh, whoa—he’s right.”
I brought my hand to the side of Scott’s face, meeting his gaze with tears. “Thank you, my love.”