The third pacemaker firing of the night—an especially lengthy one—ended about an hour ago, returning Joy at long last to her cot, exhausted. But I’m still up. Watching the EKG monitor. Considering whether to reach for my cell phone on the night table beside me so I can read some of the texts and emails that have been piling up. Maybe even try to answer one or two.
Nope. Can’t do it.
Can’t even imagine doing it, really.
My apathy worries me because I sense that it is tied to a deeper message of warning from my body. A lack of desire to do simple acts—especially those that were once habitual or pleasant—is my heart’s way of keeping me from expending even the smallest bit of energy, because no act of movement is safe anymore. Each blood-pumping heartbeat is now a blessed bonus, not a casual occurrence to be relied upon. I can feel it. My heart reminds me again and again that I must manage it—very, very carefully.
I know this because I experienced the same phenomenon a couple of years ago, after my valve surgery. At the time I wondered what might be behind my reluctance to do the simplest, most ordinary things (even after my surgical incision had healed), because I was determined to rise above whatever it was. And when, finally, I forced myself to move around freely, refusing to treat my heart like a baby in need of constant tending, I wound up in a fit of palpitations that had me dialing 9-1-1. It was then that I understood the underpinning of my strong inclination toward inertia. My heart had power over me, not the other way around. If I wanted to survive with this valve-repaired, aged, transplanted heart, I would have to heed even its most subtle warnings.
So now I sit. Just sit.
All day. All night.
I don’t reach for the New York Times that Scott brings along each morning.
I don’t open my laptop.
Even television has quickly become too much.
But I can still engage in conversation, thank goodness, because this is what fills my days with all of these friends. And at night, if I have trouble settling down after a run of pacemaker firings, I lie here and just listen.
Right now, I’m listening to Joy—to the great sound she makes when she sleeps. It is exactly the sound you might expect from her—kind of a smiley, contented mmm. I heard it for the first time by chance some seven or eight years ago while staying overnight at her apartment in Bethesda. Passing by her bedroom door early in the morning, a distinct sound in triplicate stopped me on the spot—mmm, mmm, mmm. I peeked inside and glimpsed my slumbering friend tucked under a perfectly puffed duvet. A pair of plush slippers lay centered on a white linen mat beside the bed, and on the night table sat a mug and matching tea cozy decorated in wildflower motif—each of these accessories set in place with intention and style, all special touches that Joy had made just so. It seemed to me in that moment that her happy sighs of repose fit naturally with the comfy, lovely surroundings she’d created for herself.
In fact, as I had learned during a tour of her apartment the night before, Joy had selected much of the décor for specific effect: namely, to boost and reinforce her own spirit. Stepping into the foyer, she pointed above our heads to a chandelier made of delicate shells that was, she sighed, “like a sea-spray memory from the Hamptons,” where carefree summer days were spent with family. A few stops later, we entered the living room, where a large subway sign hung prominently as wall art. “Notice the train line—the Seven . . .” she bubbled. “Takes me straight from Manhattan to my amazin’ Mets!” She had been a superfan since she was a kid.
Moving from room to room, Joy revealed to me with pride and emotion several other décor items that filled her apartment and touched her soul with the warmest, most meaningful symbolism—connecting her to friends, family, and her beloved hometown, New York.
“Your apartment feels like love,” I told her early the next morning, trying to strike up light conversation as we climbed into her car for what was sure to be a tense drive into Georgetown. “It’s no wonder you make those happy little sounds when you sleep.”
Joy stopped at a red light and kept her eyes straight ahead. “Oh, so you heard those. Yeah, I know I make ’em. But they’re not happy sounds. They’re stress.”
“We can’t be talking about the same thing. These were snuggly, cozy mmms, like if you were drinking warm cocoa.”
“Nope. Comes out at night when I let my guard down. Sometimes the sound wakes me up. It’s angst.”
“Nah, can’t be. What I heard is—”
Joy breathed out a loud sigh and I stopped myself midsentence. Her lower lip was quivering.
Joy’s appearance can play tricks, even on me.
It’s her buoyancy that does it: she’s indefatigably up. I’ve never seen anyone hunt down opportunities for enthusiasm the way Joy does. She’ll shout “Brilliant!” at my suggestion that we order two appetizers and split one entrée, and whoosh, I’m riding the wave right along with her.
But it’s not fair to say I’d been deceived by Joy’s demeanor since my arrival in DC the day prior; I know very well that her steady sparkle has years of effort and honing behind it. This is perhaps the way in which we are most alike, Joy and I—in how hard we’ve worked for the armor we don each day. We’ve talked often about the frustrations of putting on such a strong appearance all the time. And yet it has been with each other’s ongoing support that we’ve been able to brick ourselves up mightier and mightier as the years have passed—my wall being a barrier against scary health premonitions, and Joy’s a deflector of worries that scratch at her mind as a woman who is single.
We know the signs of each other’s brick-wall fissures. Joy’s nighttime sound was one—and I’d missed it.
“Fear, right?” I said as we sat at a standstill in traffic on M Street. I knew I could be direct with Joy; she’s always up for meeting my frankness with her own. “You’re fearful about today.”
“I am. And then I start to think about how, if I were married, it might be easier.”
“Well, you know what I say to that . . .”
She does. It would be a reiteration of our go-to talk, a specific bit of clarity that living with serious illness has shown me. My insights rarely apply to healthy people, but I sensed years ago that this particular one would mean something to Joy.
“We are, all of us, alone,” she said, reciting the key tenet we’d hashed out so many times.
“Yes, and even if you had a husband, it would still be you on center stage today. Even the most wonderful man couldn’t stand in your place.”
Joy agreed. As hard as this reality was, she’d long been taking my words to heart—mostly because of Scott, who’d made for an undeniable example. Joy knew firsthand his goodness and kindness; she was among the first friends at law school whom Scott told that he loved me, and the only one he wept with when it became clear that I was dying of heart failure at twenty-five. Joy knows that I have the most extraordinary love, the most devoted, adoring, and caring husband imaginable, and yet she also knows that I’ve come to the realization that ultimately I am still alone in my illness. Because when your face is covered with a sterile sheet and you’re clenching the grooves right out of your molars while a doctor plucks seventeen razor slices from your heart for biopsy, you realize, I’ve got only myself to rely on right now . . . It all comes down to me.
This doesn’t take away from the greatness of love, not at all. Rather, it holds love apart and exalts it for what it is: magnificent togetherness that balances out the aloneness that must always be.
“All right, scratch what I said about having a husband with me today.” Joy chuckled, sitting up taller at the wheel. “I’m okay, I really am. Even so, I’m beyond thankful that you came all the way to DC for this.” She pulled into a parking lot, took a ticket from the machine, and handed it to me. “You hold onto this, okay?”
“Of course.”
I followed her to the entrance of a modern office building. An attendant gave the rotating door a push, and we came through together in one compartment. As we walked the length of the lobby a sudden gust of air came up, splaying our silk blouses against our bodies and our bangs from our foreheads. The click-click of our shoes echoed with power and purpose against the marble floor. We looked good. Polished. I’d planned to wear something more casual this morning, until I thought of Scott and the rule he’d made for himself when accompanying me to my brick-wall challenges: Always dress well because it makes everyone take you more seriously.
“I think registration is in here,” Joy said, opening the door to an office on the ground floor.
I linked my arm through hers as we approached the desk.
“Hello. I’m Joy Ceterra. I’m here for my breast biopsy.”
Leja stands on a chair, reaching as high as she can toward the ceiling while Joy directs her, “Two inches to the left . . . now up, and up some more . . .”
“But I must be on one leg!” she shouts with a giggly lilt, twisting her torso as she rises on tiptoe. “Okay, I try . . .”
“We better not get one of those California earthquakes right now!” I joke. We’d felt a small one at the bungalow a few weeks earlier.
“Ahhh! Don’t make me to laugh or I fall!” Her right leg is lifted behind her.
“Right there . . . perfect!” Joy calls out. Leja presses her thumb to the wall, teetering precariously. Joy dashes over with arms outstretched to steady her. “There you go, you got it—and thank you, Leja! You can come down now, that’s the last of the high ones. And don’t they look fabulous!” The three of us glance around at a job well done: twenty rubber-chicken pushpins set into all four walls at perfectly spaced intervals. Joy surveys the remaining shopping bags scattered on the floor and reaches excitedly into a large white one. “Next, the peace signs!”
We’ve already put in a full day of redecorating my hospital room. Joy set it all in motion yesterday when she arrived with a small suitcase and several bags from a party store back in DC. She pulled out endless streamers and sparkly feather boas like a magician.
“You’re not putting those on the wall?” I said.
“You’re right, I’m not . . . Leja’s doing it with me!” Joy bubbled, and they set to work at once. By midafternoon, squares of colored construction paper covered much of the ecru paint, and a wide strip of blackboard adhesive ran the length of the dry-erase board beneath the dreaded daily-weight sign. Let there be . . . a heart! Joy scribbled in white chalk.
It was a wall-to-wall transformation—Joy-style. Applying the same sensibility to my hospital room as she did to her apartment, Joy aimed not just for visual effect, but also for a shift in aura. My room lacked humor, so naturally she thought, Rubber chickens! A kick of kitsch might work some magic too: bring on the luau paraphernalia! The objective was to make the room feel full of enormous love, like cross-country friendship and better times to come and the biggest hug that had ever been laid on me.
“But we’re not there yet,” Joy said, peeved and frowning, when yesterday’s California sun started to set. Flopping down on her cot to rest after hanging and adjusting and coordinating just about everything in those shopping bags, she looked around—hmmm, hmmm—until inspiration struck. Within minutes there was action (decided upon by a quick caucus out of my earshot); Leja grabbed her sweatshirt and was off to the store—“for the secret we do for you!” she said, giddy to be so very in on it.
I still don’t know what that secret is. One night and most of one day have since passed, and the decorating continues without any sign of a big reveal. Leja and Joy reach into a bag to retrieve the peace signs now, and my cell phone rings. “Probably Scott,” I say, figuring he’s on his way with a pizza for all of us. “Oops, no . . . it’s my Columbia doctor.”
Joy nods. “Go ahead . . .”
Leja grabs her purse, adding, “I go to bungalow. Skype with my daughter now . . .”
“Hello?” I lie back in bed. Joy unfurls a lavender fleece blanket and tucks me in like a mummy from shoulders to toes. “Thanks for calling, Dr. Davis . . .”
He’s responding to an email I sent to him a few days ago about the total artificial heart. Even though he made it clear to me back in New York that my cardiac care must be kept strictly under Dr. Kobashigawa’s direction while I’m a patient here (and the Cedars team has since reiterated that), instinct nudged me to reach across the country for his viewpoint on this. Dr. Davis has been my transplant cardiologist for almost twenty-six years: it seems unnatural to rely solely on a new doctor’s opinion when making such a weighty decision as whether to agree to a motor-driven temporary heart. In the moments of greatest uncertainty and dread, there is something to be said for history and habit and the comfort that comes from an utterly familiar voice on the other end of a phone.
In his usual curt way, Dr. Davis skips all pleasantries. “You have a question,” he says.
“Yes, thanks for calling. Dr. Kobashigawa says I’m getting much worse and he recommends that I sign a paper saying I will do an artificial—”
“A total artificial heart. I am familiar with Cedars’s use of them, yes.”
Joy gets up on the chair now, hanging psychedelic peace-sign placards with tape.
“Yeah. So, here’s how I feel about it. I’m in a tough spot because if I say no—”
“Don’t.”
“What?”
“Don’t do it.”
“Don’t do the artificial heart—or don’t say no to it?”
“Don’t do the artificial heart.”
“Oh, hmmm, all right. I was leaning that way anyway. But is there a particular reason . . . ?”
“Don’t. Okay?”
He means to end the discussion right here, I know. But I push on. “Can you please tell me why?”
“I wouldn’t.”
“You wouldn’t tell me why—or you just wouldn’t do it . . .”
“Don’t do it. An artificial heart is not for you, Amy. Okay? Bye.” He hangs up in typical abrupt Dr. Davis fashion.
And yet, unlike most calls I’ve had with him over the years, this one leaves me feeling immediately and oddly satisfied. For better or worse, Dr. Davis has stood at the helm of every one of my medical moments and, I imagine, felt the ground shake beneath him. Any advice he gives me—I recognize now more than ever—is uniquely grounded not only in the person and patient he knows me to be, but also in the medical trials I’ve faced and how close to the end of my rope they’ve landed me. Stone-cold as Dr. Davis may be, the man gets me.
Dr. Kobashigawa simply can’t know me that way. Not yet, anyway. For all his incomparable geniality at my bedside each morning, he doesn’t see the shadowy history behind my eyes, no matter how deeply or earnestly he looks into them. My tears, to him, seem only of the moment, and my choices contemporaneous. It is one thing for a doctor to simply read breast cancer/double mastectomy in my chart and quite another for him to get an emergency call from my breast doctor on a Friday afternoon, hearing, “I want to talk with you before I speak with Amy. It’s cancer . . .” and then immediately lining up a surgeon and an operating room, coordinating all the next steps in swiftest succession, as Dr. Davis did. He wasn’t at all sure that I would agree to any kind of breast cancer treatment, but he was absolutely certain that if I did, I would want to move forward with uncommon speed.
This is what compelled me to email Dr. Davis about the artificial heart: the deep, dependable roots of his insight into the big picture, the medical me. And in the definitiveness of what he just told me over the phone, Dr. Davis has shown again that he is as anchored as I am by these roots.
An artificial heart is not for you, Amy.
It sure isn’t. And he is the only doctor who can know this right away and for certain.
Lowering the cell phone from my ear, I sense that I’m scowling and smiling at the same time. Joy sees the change in my face and puts down the roll of Hawaiian skirt grass that is fast becoming my new window trim. “You okay, Ames?”
I nod absently. “Weird, though. My New York cardiologist . . . he just barked an order and hung up on me, and it was sort of, uh . . . great.”
“Barked? Doesn’t sound too great.”
“Strange, right? But just this once, I was totally up for the guy telling me exactly what to do. I think I’m getting weary, Joy. Too much to figure out and think about . . .”
“You’re exhausted. Hell, I’m exhausted just from last night. Your heart was pacing every forty-five minutes.” She collapses into a chair beside me.
“It’s gotten a lot worse, I guess.”
Joy leans all the way forward and lands her elbows on my bed, her head dropping between them. “What’s going to happen when it starts coming every fifteen minutes? You won’t sleep at all! And I’ll tell you this—you can’t be strong if you can’t get your sleep. We need to find a way. Lauren spoke with Justin about it . . .” Justin is my favorite nurse.
“Ha, of course she did! About sleep drugs, right? Justin says there’s an order in my chart for Valium if I want it. Dr. Lunchbox wrote it.”
“How about trying some tonight? It’ll be nice. We can get Justin in here and he can talk you to sleep.”
“And you’ll have some eye candy.” I grin, swatting her forearm.
“He certainly wins the hunky-night-nurse award, you ain’t kiddin’.”
“Maybe he’s single. Did you see a ring?”
“We were talking about Valium, Ames.”
“And I changed the subject.”
“I take that as a no, then?”
“Right.”
Joy brings up her pointer finger. “You want to be in control,” she instructs. “I get it. Hell, my dad calls me Iron Lady—Margaret Thatcher—and I can’t say I mind. I’m all for being strong. But taking Valium is not weak. It’s actually control—over the sleep issue. Be strong and take control of that.”
“I’m not a Valium person and you know it.”
The drug’s mechanism (tranquilizing me so that I might perceive the pacemaker’s fiery pain to a lesser degree) goes against everything I’ve learned about the dangers of compromising one’s awareness in a medical setting. As an inpatient over the years, I’ve had nurses hand me dosing cups with other patients’ medicine in them—whoops! I’ve been on biopsy tables where a doctor stabs at my neck, struggling to thread the catheter into a vein, until, finally, I give him some direction, saying, “I’m superficial” (a polite, medically correct way of saying, Try closer to the surface before stabbing me again, please). My longstanding aversion to sedation isn’t just about gaining a tougher skin with each medical challenge that I face head-on; it is also how I spot errors and save myself from harm.
Joy puts her hand against my cheek. “Amy. I think you’ve got to let go a little bit here. You can’t function without sleep. You’ll lose your mind.”
My throat tightens as I realize a frazzled brain can be as risky as a sedated one. What if I’ve lost my mind already?
I steer my thoughts into immediate poem retrieval (a challenging one—E. E. Cummings) and launch into silent, rapid-fire recitation for reassurance:
Somewhere I have never travelled, gladly beyond any experience, your eyes have their silence: in your most frail gesture are things which . . . uh . . . things which
Scott walks in just then and distracts me from my memory lapse. I expect him to be toting a pizza box, but instead he’s carrying a stack of papers.
Joy whispers to me, winking, “We’ll talk about this later . . . with Justin.”
“Amy, honey, I’ve got something you’re going to love,” Scott announces. “And before I show you, I have to give all credit to Joy. This is all her idea and doing.”
“And Leja’s!” Joy says, “She did the printing part . . .”
“Is this the big surprise?” I ask.
“Yup, yup! Let’s see what ya got, Scotty.” She takes the papers from him and begins thumbing through. “Wonderful, wonderful! Ha! Oh, and this one is priceless!”
“What!” I call out. Joy turns the page around so I can see: it’s a close-up of my niece in a full-body banana costume with only a small cutout for her face. “Abby!” I shout, laughing.
“Yeah, she got the spirit right. So, I sent a mass email this morning asking everyone to take a loony selfie and send it to me ASAP”—Joy continues to look through the pile—“but I see here that some of these, well . . . not enough loon. Still great, though. And so many! Hey, here’s another funny one . . .”
A friend with eyes bugged out, nostrils flared, and with her hair covered in paste and folded into aluminum foil sections.
“At the hair colorist!” Joy cackles. “Brilliant! There are a few more gems in here. But that’s all I’m going to show you right now, my friend, because this whole pile is going up right there.” She points to the wall directly across from my hospital bed. “Let’s get started! If you’ll give me a hand, please, Scott . . .”
“At your service!”
I lie back and watch them work. Down come half a dozen pink feather boas and a few peace-sign placards. “To be relocated!” Joy calls out. Medical tape in hand, Scott marks and re-marks boundaries according to Joy’s eyeball estimations; it takes them a while, and I feel my initial excitement turn to lethargy.
“I think I’ll close my eyes for a few minutes.”
“Oh, good, honey,” Scott says, coming up alongside my bed. He strokes my hair as I curl up beneath the throw blanket. I sense that I’m mumbling—It’s hard to breathe . . . so, so hard—but all he hears are drowsy sighs that he mistakes for my drifting off. “You sleep now, my love, you sleep,” he says.
But I won’t. If I let myself really relax, my pulse will drop like it does at night, and my pacemaker will fire through my chest. When I said, I’ll close my eyes, I meant only that. My mind and body need to remain awake and active to keep the pain from coming.
As I lie still and preserve my energy, Scott and Joy confer quietly.
“She’s so tired,” Joy says.
“I know.”
“It’s worrisome. I’m going to try to get her to take a Valium tonight. Maybe Justin can help. I put in a request for him to be Amy’s nurse again tonight. Lauren told me I could do that.”
“That’s great. But Amy is, you know, headstrong. Chances are she’s not going to take it. Maybe I should sleep here tonight and you can stay with Leja at the bungalow and get some rest.”
“No way, buster! My place is on that cot. Period. Now—which photos do we want on the top line?”
“You’re a good friend, Joy. Amy is lucky.”
“And I’m lucky too. I want to be here. If I can make one small bit of difference to you and Amy when you’re slogging through this wait, it’s worth a few nights without sleep.”
“Well, maybe Amy will give you a break tonight and try a Valium.”
Give Joy a break.
I should, shouldn’t I?
So many people are doing all they can for me—friends, family, doctors, nurses, night and day, every day—and what do I do for them? Measure my pee? Try to eat a little something? All I do is take, take, take. My responsibilities, other than keeping up the fight for life, are nonexistent. I’m too sick for anyone to expect anything from me. But that doesn’t mean I shouldn’t be giving them anything.
A break.
Yes. I can try, at least, by putting aside my aversion to sedatives.
Joy would be happy. Scott too. Justin would feel gratified, as would the prescriber of the drug, young Dr. Lunchbox. By simply swallowing one pill, I can perform a very apparent act that’s giving and loving and kind.
I won’t gain any additional sleep by it, though.
Medical logic tells me so: If Valium is meant to bring my neurological and physiological activity down to a sleepy whisper, then it will also slow down my pulse rate. This means that the benzodiazepine wallop will actually wind up increasing the number of fiery pacing episodes overnight. Surely the doctors and nurses recognize this. Are they figuring the Valium will reduce the pain I feel during pacing episodes enough so that, even if they come at greater frequency, I can better manage them? I don’t buy it.
I’m left, then, with a choice: use my own medical reasoning to spare myself additional suffering, or simply do what is being asked of me by my medical team and the people I love. I mull this over, keeping my eyes closed.
“All right . . . on the top we’ve got your parents, and then Ann, Gary, dog Winnie, dog Milo, Deirdre and her two boys, and, uh . . . who’s that?” Scott asks.
“My niece. Amy helped her prepare for her seventh grade chorus solo last month . . .”
“Middle line—Griffen, Lily, Val, Casey with two friends and—oh, nice—a pitcher of beer . . .”
I feel that tug again: All this love coming at me, but what am I giving in return?
Death be not selfish, right?
Scott’s cell phone rings; it’s the pizza delivery. He tells Joy he’s going down to the lobby to pick it up. His sneakers squeak from the room.
I open my eyes to slits, just enough to peek without Joy noticing. Through eyelash haze, I see Joy up on a chair smoothing a long piece of tape across an expanse of photo collage. She lowers herself to the floor, takes a few steps back to regard the whole, and then climbs up again to make small adjustments. Down, up, down, up—she repeats the process a few more times, aiming for perfect symmetry and positioning. Joy has faith in the placement of objects. Surroundings, as Joy sees them, are not merely suggestive; if chosen with heart and mind, they actually speak directly to you. A span of corkboard, when accented with rubber-chicken pushpins, prompts laughter. A drab window trimmed up in grass-skirt fluorescence beckons you toward the sun. And a wall covered in beloved smiles plus a couple of furry tails and a human-size banana—well, if it’s curated by my friend Joy, then it becomes a wall of love.
I pop my eyes open to fully appreciate the scene. “Wow!”
Joy plummets into a squat on the chair, hand flat against her chest. I’ve startled her. “Whoa,” she says. “Now that you’ve given me a heart attack . . . Oof, I shouldn’t say that!”
We laugh.
“Really, Joy—wow. This wall is . . . well, all the walls, really . . . you’ve done something amazing here.”
“Nah, nah, stop. I’m just the paper hanger.” She sits beside me on the bed and exhales long and tired. “It’s the faces that make that wall, and they all came from the people you see up there. I sent a group email and, like, ten minutes later, I got the most enthusiastic response. The selfies, the kindest notes . . . they poured in. Everyone wants to do something for you, Amy. Everyone.”
Scott walks in carrying a cardboard box. “Oh, sweetie, you’re up. Good! I’ve got a pizza here, but I’m happy to run out and get you a yogurt if you prefer, or a bagel, or—”
“Pizza’s great,” I say, even though my fluid-filled belly probably won’t be able to stand a slice. My response to Scott is pure reflex; Joy’s words still echo in my head—everyone wants to do something for you—and I’m feeling the weight of how I take, take, take.
There’s little recompense in a few bites of pizza. But there’s more of it, I know, in two and a half milligrams of Valium.
Maybe I’ll try it tonight after all.
I swallow the little yellow pill.
Joy turns off the lights and moves swiftly into distraction mode. “Now tell me, Justin, where do you live exactly?”
This is Justin’s third night with us. Joy has already made him her pal and has insisted that he confirm that we’re his favorite from among the three rooms assigned to him, saying, “Come on, Justin, who’s better than Amy and me?” We are, after all, decades younger than the yellow-socks folks we’ve spied on our hallway strolls. And now, with the redecorated sleepover party pad, as we’ve started to call it, Justin has all the more reason to stop in during the night shift, take a seat, and chat with us girls.
He lowers himself into the Lauren chair by the door. “Silver Lake,” he answers. “It’s about twenty-five minutes east of here. We’ve got a little garden apartment.”
“Oh, so it’s we, is it? You married, Jus?” Joy says.
Jus? I forget the pill for a minute and settle in to watch the terrific spectacle of Joy reeling a new friend all the way in; she does it with such precision and ease. It’s something to see—and learn from.
“I live with my girlfriend, Jeanie, and actually I’m going to propose to her next week.”
“Amy, did you hear! Don’t fall asleep just yet! I’m about to delve into the life of our fave night nurse. So, Justin . . . you have a ring?”
He flashes a California-white smile. For the first time, I see dimples . . . and those arms, shown off nicely by the short-sleeve Cedars top he’s got on. Why didn’t I notice this yesterday? I’m on the verge of hooting, Nice biceps! but laughter comes out instead. “Sorry,” I say, “feelin’ a little, ah . . . light.” Joy pops her eyes at me.
Justin is unfazed. “Bought the ring just two days ago, as a matter of fact. Want to see a picture?” He reaches into his pocket for his cell phone.
“Of course we do!” Joy says, rising from her cot and padding around to the other side of my bed. Justin turns the screen toward her, and she peers at the small image. “Ooh. Is that a marquise cut? Lemme see up close . . .” She squats down beside him, and the cell phone illuminates her eyelashes and the curve beneath her bottom lip. Through a gauzy haze, colors appear matte and oversaturated to me now—I think I see a halo and it’s yellow. Or is that gold? Joy is a fresco painting.
“Take a look at my friend here, isn’t she something?” I say, sensing little division between my thoughts and words. “And she has the softest skin, I swear. Joy, roll up your sleeve so Justin can feel you.”
What am I saying?
It’s got to be the Valium . . . or I think so, anyway. It’s hard to tell if it has kicked in all the way. I’ve only taken this drug a few times before, very early on after my first transplant at Columbia. Back then, protocol for annual-exam angiograms included 2.5 milligrams of Valium along with one 25-milligram tablet of Benadryl—a double whammy intended to ease anxiety during the procedure and induce much-needed sleep afterward. The mechanism to ensure sufficient closure after completion of the procedure was time spent lying completely flat (a minimum of eight hours) with a sandbag weight placed atop the femoral artery access. Better to be sleeping through the irksome, motionless hours on one’s back—and better, also, to be giggling silly at the doctor’s lame jokes while he cuts into your groin.
I took those pills without protest and enjoyed them. I was in my twenties—a novice patient who didn’t know I could refuse when a nurse handed me one pink pill and one yellow. I also hadn’t yet learned that remaining completely alert and participatory was the safest way to be in a medical setting, no matter the recommended sedative protocol. But then new methods for groin closure came along, and patients were able to get up and out of the hospital after just an hour or so of lying flat. Long-acting Valium and Benadryl were replaced by short-acting IV drugs like Versed (the forgetting drug), and that’s when I found my voice as a self-advocating patient and said, “No sedation.”
And now, tonight, I’ve asked for Valium.
In the absence of the added Benadryl kick, I don’t know what the ratio of giggle to slumber might be. But for sure, I am not going to be at my vigilant, focused best.
“I feel stupid,” I say. “And I don’t like it.”
Joy shifts her attention away from Justin. “You’re all right. Just roll with it.”
I start singing under my breath, “You just roll with it, baby . . . Come on and just roll with it, baby . . . Remember that song? Eighties. Steve Winwood. Fire Island weekend. I was at this bar with Jill, or more like I was at the bar with Jill’s boobs, because they were like two giant guy-magnets and I was invisible! Ha-ha-ha-ha . . . But wait, wait, that’s not funny. It’s serious. But also funny, right? I was at a bar with Jill’s boobs!”
“Uh-oh,” Joy says, raising her eyebrows at Justin. “Ah, Justin—you sure you gave her a sleep aid and not a loony bird pill?”
“Affects people differently,” he whispers beneath my giggling. “Sometimes they get real loose at first . . . then sleepy.” Trying to meet my eyes, he raises his voice. “Amy, you feeling all right?”
“Yeah,” I say, sensing my eyes unfocused and soft. “But I’m not happy . . . I’m not all here.” My words are a little slurred and it scares me. I shoot an anxious glance at Joy. “I can’t watch out for myself if I’m like this . . .”
“Stop that thought right there,” Joy insists. She hands Justin his phone and comes to sit beside me on the bed. “There’s nothing for you to do now except sleep.”
“But the problem with sleep is this,” I say, working hard to clear my head of the thick syrupy languor. “Once I’m asleep, the pacemaker is going to kick in, just like always—don’t you think so, Justin? Why didn’t Dr. Lunchbox think of that? It makes sense, right? It makes sense.” I’m prattling and I know it, but words and thoughts are sticking together now and I have no will to separate them.
“We’ll soon find out. Let’s hope the Valium will help you sleep through the pacing,” he replies.
“Nooooo. Not going to happen. Justin. Listen! If a sledgehammer hits you over the head while . . . oh, wait . . . funny! I said sledgehammer. Isn’t that a Steve Winwood song too? What is this, eighties radio trivia night? Oh, never mind. I’m an idiot on this drug! You know I’m afraid of being all la-di-da out-of-my-right-mind, Joy. And what if the Valium slows my breathing? My lungs are full of failure, uh, I mean, fluid . . . uh, I can die if things slow down too much . . .”
She grips my hands tight and shakes them like horse reins. “I know what you’re thinking. I know what you fear. And that’s why I’m right here beside you. I’m going to sit in that chair with my eyes on you all night, just like I said I would.”
I nod with relief and start to let my heavy eyes close.
Justin’s eyebrows shoot up. “All night? No, no, no, you need to sleep, Joy. I’m the one who stays up all night. That’s my role.” His whisper is softer now, perhaps in hopes that my closed eyes mean I’m drifting into sleep.
Joy lowers her voice as well. “I promised Amy that if she takes the Valium, I’ll stay awake and keep watch over her. I figure I’ll take some notes, write down how many times the pacemaker fires and how long it takes to get her pulse above eighty. I’ll watch her breathing . . .”
“The monitor does that. It’ll let us know if she’s not getting air. You don’t have to do that.”
“I do, Justin. You don’t understand how afraid Amy is and what a big deal this is for her to take a sedative. The girl would do her heart transplant surgery awake if she could.”
He gets up from his chair. “All right. If it’s quiet on the floor tonight, I’ll try to stop in and take over for fifteen minutes so you can sleep a little. And keep in mind you can rely on the monitor, like we do for all our patients on this floor.”
Joy tells him she understands, but wouldn’t feel right letting a machine take care of me, not after making a promise to stay awake. “And don’t worry about me getting sleep. I’m fine. Plenty of time to snooze on the plane home tomorrow.”
My lips move and a few syllables come out. “That’s my Iron Lady,” is what I mean to say, and I hope that Joy hears.
She sits on the chair beside me. I inch my body to the edge of the bed and extend my arm out to feel her there. Joy takes my hand and, finally, I give in.
The wall she built today has inspired mine to come down.
All right, Valium. I’m yours.
It’s seven a.m. and Joy reads her notes out loud. “Let’s see now,” she says, lifting a sheet of lined paper in front of her face. Yellow highlighter marks show through the page, telling me that she has already reviewed her data carefully and that what I am about to hear is the presentation of a reasoned argument.
“First, the not-great news—you were up with pacemaker pain six times.”
“Told you. Sledgehammer to the head will wake you every time.”
“Not every time, and this leads me to the better news. You actually slept through pacing at two thirty and again at three fifteen.” She told me she saw it on the monitor, which I had taught her to decipher over the last three nights. “I watched your pulse drop . . . it slid down to something like fifty. The EKG got all squiggly—that was the pacing—but you stayed asleep. As a whole, I’d rate the night as Valium success-ish.”
“And I’d call it a period from hell.” Somewhere after midnight I woke with cramps, and sure enough, I was bleeding. Surprisingly, the severe state of my heart failure did not keep my period from coming on time. What it did instead was bring it forth with a vengeance. I hadn’t experienced such a heavy flow or contraction-like cramps since high school. “The pain is worse this morning.”
“You sure don’t show it. Want some Advil?”
“Not allowed. It interacts with transplant medicines.”
“Can’t you take just . . .”
We hear someone push open the door with a “Morning, morning.” It’s Dr. Kobashigawa. “Hello, hello.” He shakes my hand, then Joy’s. “I think I’ll take a seat before examining you, if that’s all right.” He asks me how my night was, and I tell him I woke with a terrible period.
“It’s bringing so much extra pain,” I say, hugging my thighs to my chest for a few seconds before breathlessness forces me to let them go.
“Can she take, maybe, just one Advil?” Joy asks.
Dr. Kobashigawa flashes his warm smile. “Oh nooo. That would be very dangerous for her kidneys.”
I figure I’ll try to get by with some Tylenol. But the pain is coming in waves now, sharper and deeper with each one. I can feel my pajama bottoms sopping with blood, and the thought is nauseating. I start to hope this will be one of Dr. K’s shorter morning visits.
“I have some good news about your status on the waiting list,” he says. “We’ve been granted an exception for your case, and this makes you a 1A-E as of yesterday. Let me explain . . .”
I try to focus on his words, but the seizing pain distracts me, and I’m not sure how long I can sit and listen.
He tells us that it was necessary to submit paperwork justifying my 1A-E status (1A is the highest urgency, and E is for an Exception) because the particular manifestations of heart failure from which I suffer, as well as the type of life-sustaining care I’m receiving at Cedars, do not fall squarely within the requirements for this top waiting list tier. Even though my vasculopathy is clearly end-stage and irreparable, the diagnostic snapshot of my heart function (a conglomerate of specific test results, including pressure measurements in the right heart and assessment of the pumping capacity of the left ventricle) does not reflect the severity of my extensive artery disease. “And of course you don’t have a Swan in your neck, which is a requirement for 1A,” Dr. Kobashigawa adds, “another reason why we needed to get you an exception.”
He means Swan-Ganz, a catheter named after the two doctors who invented it (one of them at Cedars) back in 1970. Externally, the device looks like a plastic tube attached to the side of the neck and curled at the top like a memorial ribbon. Beneath the surface, it runs through the jugular vein and into the heart, where cardiac-sustaining medications can be delivered directly and their effects monitored.
“Most of the patients on this floor have a Swan in place,” he explains to Joy. “But Amy’s condition cannot tolerate the dobutamine that would be administered through it.”
“Revs up the heart like a race car. Keeps it beating,” I explain. “Although a few cc’s of dobutamine would actually kill me.”
Dr. Kobashigawa closes his eyes and grins. “You don’t mince words. And once again, you are correct.”
Another sharp pain grips my pelvis. I feel a gush of blood between my legs.
Oh, crap, I’m going to vomit . . .
“And so, the 1A-E. You’re at the top of the list now.”
Joy brings her hands together in a single clap. “Fan-tastic! Brilliant!”
He holds up a hand to caution us. “The 1As who’ve accumulated longer waiting time will have priority,” he says. “And then of course we need an antibody match—that’s tricky, but I’m going to stay optimistic.” He gets up from his chair and steps forward to examine me.
Hold it together, Amy. Don’t puke on the guy. Think saltine crackers . . . saltine crackers . . . ginger ale . . .
The stethoscope lands first on my back. “Breathe . . . and again . . .” he instructs. He turns my chin to the left and assesses the throbbing purple vein in my neck. “Never fails to amaze,” he says.
“Yeah.” I’ve broken into a sweat. Just a few more seconds while he listens to my heart . . .
Stethoscope to chest now. Pause, pause, pause.
“All right. I will see you, then, tomor—”
“I’m sorry, but I have to throw up!” I lurch forward and he jumps out of the way with a “Whoop!” and heads for the door, promising to get the nurse.
I rush to the bathroom, drop to my knees, and begin heaving.
Within seconds, Joy is kneeling alongside me. She puts her hand on my back while I vomit again and again. When I finish, she grips my arm and helps me to standing, fills a cup with water and steadies me while I rinse. Again, I feel a surge of blood; this time it runs down the inside of my legs, all the way to the floor. “Oh God, I gotta sit down . . .” Joy helps me turn around and sit down on the toilet. She notices that my pajama bottoms are soaked with purplish-red blood; I look down at the mess and start to weep as another wave of pain cuts through my lower abdomen. “I need to . . . get these pants off, but I . . . I’m going to throw up again . . .”
Suddenly there’s a basin in front of me; Joy spotted it on a high shelf and landed it on my lap in seconds. She is everywhere at once—an octopus woman with eight arms in motion. “But my pants . . . the blood,” I moan, just before another heave.
Her hand returns to my back. “We’ll get you cleaned up in a minute. Don’t worry.” She rubs and rubs in gentle circles. “Shhh . . .”
Soon, the cramping and nausea begin to calm. “I think that’s it,” I say. She lifts the basin promptly from my lap.
“I’m going to put this just outside the bathroom until I figure out what to do with it,” she says, and I watch her bend to place it just beyond the door frame. She pops up and whirls to face me. “Now, those pajama pants . . .”
Joy kneels in front of me. I try to place my thumbs under my pajama-bottom waistband, but I’m weak and shaking. She takes over at once, sliding the saturated flannel past my knees and feet. I look down and see that my blood-soaked underwear still clings midthigh, but I’ve got my hands on either side of the toilet seat now and I feel I may collapse if I lift them. “I can’t . . .” I whimper.
“I’m on it,” she assures me, and sets to removing my underwear in a succession of small, sticky tugs. She tosses it along with the pajama pants into the shower stall, then steps quickly over to the sink. Soon, she’s standing in front of me with a wet towel. “It’s warm,” she says. “Want to clean up down there?”
I glance at my blood-smeared thighs; I desperately want to clean them, but my body is still weak and trembling. This violent menstrual period is a new challenge that has rendered me immediately helpless, but I find myself easing into the hands that care for me. With the seamless presence of loving friends week after week, ceding some of my independence is starting to feel like an act of gratitude.
I don’t even reach for the towel. “I . . . I don’t know if I can.”
Her response is instantaneous: “Let me help.” I accept gladly.
It was only two months ago that I scoffed at Joy’s offer to sleep in my bedroom back in New York. But now here I am in California, unfathomably exposed, and I’ve invited this same friend to lay eyes and hands on a most private part of me, tending to the task of cleaning my bottom half with the gentle thoroughness of a mother.
She tosses the used towel onto the shower floor and heads to the closet for some fresh clothes. “I don’t need a shirt, this one’s clean,” I call out.
“You need a shirt. Change up your outfit, change the mood of the day.” She steadies me as I stand up to slip on the clothes. “Period from hell, be gone!” she commands.
And why not? Joy’s intentions wield power here. For the past four days, I’ve watched them transform every corner of my hospital room, setting some of the horror back on its heels and proving once again her credo that atmosphere matters, not only for me in the wake of blood and vomit in the bathroom, but for all who enter this setting of galloping heart disease throughout the day and night. Cedars staff have been stopping in more often and staying longer now that Joy and her décor are in place; nurses plop down in Lauren’s chair, let out a sigh, and tell us, “Ahhh, this room transports me . . . Mind if I just sit here a bit?” And by the time they leave, Joy has made a new friend for herself—and for me. Her attention is fairy dust.
I can feel its magic on me as I lie here now, reclining on the bed with a soft blanket over my legs, cleaned and cleared of the early-morning ordeal that Joy has placed tidily behind us. I reach into my drawer for my Tylenol stash, swallow two Extra Strength caplets, and begin again the day that she’s already made better for me.
“You handled that really well,” she says.
“I’d say it was you who did the handling . . . or the pretty darn disgusting multitasking, really. I’m sorry you had to see all that.”
“See what? I was in action mode. Constant movement. No time for being grossed out. I will accept no sorries. Sorry!”
“So then—what? I should just say thank you?”
“I know you would have done the same for me, you big goofball. And hey, you’ve already done wonderful things for me, if you want to start comparing.”
She brings up the breast biopsy from years ago. The pathology result turned out to be benign, but the specter of an alternative outcome shook her to the core. We had a long talk together the night before the procedure, and Joy had shed rare tears of panic and dread. “What happens if I have cancer? How will I manage chemotherapy?” she wondered.
Joy reminds me now what I said in response: “You told me, ‘Then, you’ll come live with us until you’re well.’ I felt safe because I knew you meant it.” She insists I’ve provided other refuge as well, and begins to revisit the ways I’ve run reliable interference against some of the less obvious anxieties of her single life, including times I stayed on the phone with her when the cable or repair man came through the door. “Honey, what time do you think you’ll be home for dinner?” she would say as I played husband to her housewife so that the eavesdropping intruder wouldn’t know she lived alone. And there was a particular rough patch back when we were in our thirties, Joy reminds me, when she would go on a trip and couldn’t help but think, How long will it take anyone to realize if I don’t make it back home again? Sending me an email with flight numbers, dates, and times gave her a feeling of security.
“None of those things involved wiping up period blood,” I point out.
“I call it even,” she says. “And don’t try to tell me that I did the work in that bathroom—because it was you. You were amazing. So strong and focused—you didn’t even throw up on me! We were a great team in there.”
Great team. Amazing, strong, and focused.
That’s what Lauren said last week.
I wonder how specific the nightly emails have become. Do they now include sample statements for helpful conversation or praise? It can’t be a coincidence that Lauren and Joy are using the same words. There’s a conspiracy of lauding going on, and curiously, I don’t mind.
Over the years, my friends have learned to refrain from complimenting me on how well I abide my body ills. They’ve seen me take quick offense to pats on the back for actions, deeds, or behaviors that would not be worthy of attention in a healthy individual. But now, here’s Joy reminding me of the long history of reciprocity in our friendship and connecting me to my stronger, more giving self, and I’m uplifted by it. And when she tells me that I vomit with good aim and that, boy oh boy, can I withstand a spate of killer menstrual contractions—I’m surprised to find myself thinking, simply, Thanks for saying so. Commendable action has a new measure here in this hospital room, and so I respond to it in a new way; because the trials of my body are displayed conspicuously, I do not feel affronted by praise for how I deal with them. Instead, I feel fortunate that all my girlfriends seem intent not only on pointing out the best of my daily endeavors, but also on ensuring that the next visitor on the schedule does the same. They figured out—even before I did—that this is what I need.
Although these women arrive individually and sleep on the cot by themselves, they are linked, I now see, by a strong, supportive chain. They are never without each other in this retransplant effort, and I am never without the whole group of them, regardless of who may sit beside me on any given day.
Are we all—all of us—alone, then?
I look at the photo collage on the wall.
I’m not so sure anymore.
“Now it’s time for me to go clean myself up,” Joy says, gathering her toiletry case and towel. She will go to the hallway bathroom rather than use mine here in the room, and it is by her own declaration that she (and all visitors) must do so. “You don’t need everyone’s germs,” was how she put it, proposing a Joy Amendment to the bathroom procedure a few days ago. I imagine she’s put it into writing in the group email, codifying it into law.
She steps into the hallway, and I reach into my night table drawer for the drawing pad Jody brought for me. I pull out a red colored pencil and write in large letters a quote I’d memorized back in college. Yeats. It was just one of many lines that struck me back then, but now I have an eerie feeling that I was meant to find it, to learn it, and to be alive to use it just this way.
I get out of bed and muster enough strength to push a chair up to the wall of selfies. I climb onto the seat shakily, Scotch tape in one hand and the sheet of drawing paper in the other. By the time Joy walks in, I’ve barely got enough breath to speak. “Can you . . . tell me if this . . . is the center?” I place my hand on the spot I think may be the middle.
“I think so, ah . . .” She steps back from it. “Down a bit and over to the . . . Wait! Get down from there! Let me do that, you silly!”
We switch places and I direct her. Joy presses some tape to the wall and stands motionless, staring for a few long seconds. When she turns around, her eyes are welled with tears.
“That’s perfectly beautiful,” she says.
I look up at my handwriting, nestled now among the many, many faces:
Think where man’s glory most begins and ends,
And say my glory was I had such friends.
—Yeats
From: Joy Ceterra
Subject: The Wall of Love
Date: April 17, 2014 at 11:50 AM
To: Jill Dawson, Lauren Steale, Valerie Yablon, Jane Keller, Robin Adelson, Jody Solomon, Ann Burrell, Leja Babic
Thanks everyone for sending your photos so quickly. Along with the others I’ve received so far, they’ve turned the drab hospital wall to color and love for Amy. I wish you could have seen the big smile on her face at the moment of my big reveal! Lights, camera . . . Wall of Love! (See photo below: it’s a work in progress . . . more photos coming in day by day, so when you’re here, please continue to mount them—Scotch tape in Amy’s night table drawer.)
Sad to say, I am leaving today. But Val arrives shortly to keep the friend chain going and the love flowing. We’ve had good moments and not so good moments here this week, but most importantly, together with wonderful Scotty and the amazing daily presence of Jack and Jody, we’ve filled Amy’s days with comfort, warmth and even some laughter too.
Next project on deck: Let’s get our girl a freakin’ heart—NOW!
Wishing you . . . JOY