My room seems to sink with the sun every day around this time, when the light starts to fade against the always-cobalt California sky. This unchanging weather pattern has made for a drought, Jody tells me. It hasn’t rained even once since Scott and I arrived here in late February—or so I’ve gathered from looking out my window at the same dry sunrise and sunset and all the clear hours in between. Early-morning clouds give way quickly to a dazzling blue that stays straight through to evening, when, sometimes, a wash of pink brushstrokes take over, as has been the case more and more lately. California spring is here, Leja announces daily, along with her recitation of the names of budding flowers and blooming trees she passes while walking the few blocks from our bungalow. I imagine signs of the season’s change must be cropping up back home in New York too. The foot-high snow that covered my lawn when I left has no doubt given way to lilac crocuses and yellow daffodils that line the path from my driveway to the front porch. Today is May 1.
It’s less than twenty-four hours after Jill and Robin’s departure, and three pairs of slippers now rest on top of my bed, each originating from a different point and coming toward the center at angles formed by six denim-covered legs: Lauren’s jutting out from the chair by the door, Joy’s from the lounger on the opposite side, and mine, a straight shot from the assortment of pillows that prop me up at the head of the bed. There’s a new pillow added to the mix today—Mr. Met, an orange-and-blue eighteen-by-eighteen-inch square body with a baseball face sticking out from the top. It was Joy who brought this pillow creature along, of course, stuffing him into her carry-on. “It’s a cross-country extension of my Mets shrine,” she explained yesterday when presenting it to me.
Lauren might not have understood what Joy meant by this, but I’m plenty in the know about the precise shrine-like arrangement of Mets paraphernalia that has long been her spring routine and obsession. Even though Lauren and Joy are longtime friends, having known each other for over twenty years (Joy shared an apartment with Lauren’s then boyfriend, now husband, Lenny, during law school), I doubt they’ve ever talked about the yearly setup of Mets bobbleheads, buttons, and scorecards in the corner of Joy’s DC living room. Joy shares her general high-spirited enthusiasm unrestrainedly, but her kookier stuff gets only a selective reveal. “Let’s just say some LA vibes might help our pitching lineup,” she added quickly, smoothing over the shrine reference before Lauren had a chance to wonder about it.
I rest my head against Mr. Met and gaze out the same old window. Lauren types rapidly on her iPad, and Joy sits with a stack of work papers on her lap. They’ve both been hoping I would nap today, encouraging me every hour or so to give it a try, saying “Just close your eyes . . . that’s it, off you go . . .” the way a tired mother coaxes her toddler to go down for a nap in the afternoon—because it’s good for the kid, yeah, but also because she needs some time to straighten up the house, make some phone calls, and start dinner. I’ve resisted their collaborative urging, though, and so the second day of this double-friend visit has passed in conversation.
Having covered so much territory already, today’s talks have run especially deep and wide, pulling me further and further away from a nap because they felt to me like some of our best so far. At moments, I even allowed myself to disconnect from the subject matter a bit, lie back against my pillow stack, and just take in the feeling of the three of us together—the relaxed exchange and soft laughter interspersed with refrains of me too and that’s so interesting and I never thought about it that way. We spoke less about what is concrete and accessible and more about what makes us wonder. By listening openly and carefully to one another’s statements of evidence, we affirmed that we all possessed the gift of remarkable intuition. And as we did so, I swear I could smell Val’s lavender mist rise up around us.
“You know what Joy and I think . . .” Lauren admitted to me this morning, glancing over at her for permission before continuing, “. . . we’ve got a feeling—well, it’s more than that—we know that one of us is going to be here when you get your heart.”
Joy chimed in, “Yeah. We are sure that it’s going to happen during one of our shifts.”
“What a great thought,” I said, closing my eyes for a second and imagining what that might be like.
But now, hours later, I’m back to thinking only of the here and now. Hours of conversation have given way to a constructive quiet. With our slippers mingling at the end of my bed, our minds are free to separate and focus individually for the first time today—on one iPad that connects Lauren with her family, one pile of papers that moves Joy through her workload, and one late-afternoon window view that shows me (again) the impotence of hope.
Another day has passed without a donor heart, and soon there will be another night of pain to show for it.
I hate five o’clock.
This is the time of day when my eyes gravitate to a single red light off in the distance; it shows up more clearly in the late afternoon, slowly blinking at me as the sun begins to dip slightly west. At night it becomes a constant beacon that—for a flash of seconds in between pacemaker firings—I allow myself to believe holds promise somehow. I watch and wait for its light to give me a positive sign, but it hasn’t yet. And right now I’m thinking maybe it won’t, ever.
So much for enchantment . . .
And for that hopeful hummingbird . . .
And my Hebrew name written in the book of life, not death . . .
And Ena’s god, who was everywhere . . .
And for the universe that has surely been stormed . . .
It’s just a silly light, Amy. It has nothing to say to you. Stop being pathetic.
This snap at myself feels well deserved—for giving in to desperation that imposes believability on nonsense. I make myself a promise: that from this moment on, everything I think and say will be limited strictly to reality.
Except when talking with Casey, that is. I haven’t told him about the countdown on my wall, and Scott hasn’t either—yet. I imagine, though, that when there are three or four days left, we’ll have to pluck him out of the end of his semester and buy him a plane ticket. Meanwhile, Scott and I continue to walk a fine line: trying to keep Casey informed about my medical state without sounding too many alarms that would throw his final college days into a chaotic whirl of grief.
In my mind, I am now facing the most challenging test of our long-held promise to spare Casey the seriousness of my health issues. The minute I took out the red marker to scrawl the first number on the piece of paper, I thought about whether my son should know about it.
No.
It would be selfish beyond all reason.
This countdown is something I need.
Casey doesn’t need it.
This countdown is the only thing that enables me to hold on.
Casey doesn’t need to hear about the fighter pilots.
There is still a chance, after all, that a donor heart might come through. It’s a long shot, sure, but to call Casey to my bedside at this point so he can watch Mom count down her life by way of descending numbers posted on the wall—this would be my most punishing last act. I won’t do it.
I will spare him.
I will hold on through the missions that remain.
And I will send a final plea out into the universe that somehow, some way, a donor heart will come just in the nick of time and prevent Casey from ever having to know just how numbered these last days were.
I turn my head away from the window and shut my eyes tight. Lauren and Joy are completely focused on the words in their laps.
“I want a DNR,” I call out suddenly, startling them.
“What, what?” Joy flinches in her chair.
Lauren’s head pops right up. “What did you say, sweetie?”
“A DNR . . . ‘Do Not Resuscitate.’ I want one of those.”
“Not sure what that is exactly,” Joy says, meeting my eyes with engaged softness.
“It’s a document that tells the hospital not to save me if my heart or breathing stops. I should have done this right away when I got here. But I’m a lot sicker now, and it’s looking more and more like it’s all going to be over in about ten days anyway.” Lauren and Joy raise eyebrows at each other.
“Ah, I think that sign on the wall over there says twelve days, missy,” Joy quips.
“Okay, twelve, har-dee-har. But I’m serious. What are the chances I can get the resident in here to start the paperwork, do you think.” This is not a question. I push the nurse call button before my friends can answer—or object.
A voice comes over the loudspeaker above my headboard: “Can I help you?”
“Yeah, hi, it’s Amy Silverstein. Would it be possible for the resident to come in for minute? I have a question for him.”
“I’ll let him know.”
“Thanks.”
Lauren and Joy sit on the bed beside me now, one on either side. Lauren untucks the throw blanket from around my legs and reaches beneath it to rub my feet. “Let’s talk about this DNR,” she says. “Why is this so important to you all of a sudden? You’re no sicker today than you were yesterday . . .”
Joy opens her mouth and looks up at the ceiling for a few seconds, gathering her words. “And . . . I think Scott should be part of any decision like this, don’t you, Lauren?”
“Yes, I most certainly do, Joyous,” Lauren agrees, using a nickname from years past to emphasize their alliance. My friends are not speaking with me right now, but rather in front of me—the way parents do when a young child misbehaves. Tommy needs to understand that he can’t throw his broccoli on the floor, right Daddy? As a mother who has tried this tactic myself, I know that Joy and Lauren’s goal is for me to overhear the directive, feel overcome by the strength of two against one, and alter my conduct.
“Guys, guys . . .” I say, waving my arms in front of their faces. “Getting a DNR is not a brand-new idea to me . . . or Scott.”
A white-coated body enters the room just then with short, tentative steps, as if on a tightrope. It’s Dr. Lunchbox, poor guy—by now, he knows to expect from room 1621 a challenge that is beyond his repertoire of solutions or easy evasions. A smile of relief comes across his face once Lauren turns around to greet him; he is used to her engaging him in calm but highly directed conversation in the hallway. During Lauren’s previous visit, I learned to recognize her saying, “I’m going to make a phone call in the hall,” to mean, I’m going to talk with Dr. Lunchbox about this. Apparently, she has advised the young doctor well. Once or twice, I swear I’ve heard Lauren’s exact words come out of his mouth—and I had to smile at their aptness. I bet he never imagined that a fifty-year-old suburban mother of three would add so much to his medical education and prowess.
“Dr. Baird, I have a request,” I say. “I’d like a DNR.”
“Oh . . .” His eyes become very round. “All right.”
“She hasn’t spoken to Scott yet,” Lauren offers.
Dr. Lunchbox puffs his chest a little, saying, “There is no requirement for Scott to sign.” His newfound confidence comes from being able to quote established procedure. “Dr. Kobashigawa needs to cosign, actually. It’s a form. Pretty straightforward.”
“Can Amy change her mind after she signs it?” Joy asks.
“Yes.”
Lauren chimes in, “So, if an emergency happened, she could just say, Forget my DNR . . . go ahead and save me?”
“Anytime. Yes.” The doctor turns his head from Joy to Lauren to me. “All right, then—I’ll note in your chart that you are requesting a DNR so Dr. Kobashigawa can take care of it tomorrow morning.”
“Great. Thank you.”
He steps toward the door as quickly as he can without running, but Lauren jumps up from the bed and follows on his heels, straight into the hallway.
Joy reaches for my hands. “Talk to me.”
I give them a squeeze and let go. “I want a DNR, Joy, that’s all.”
“No, my love. That’s not all. See, you and I, we like control. And you feel like you don’t have control right now, because you don’t, after all. But is a DNR really what you want here, because I think—”
There is no sign that Joy is going to let me get a word in, so I have to talk over her: “It is what I want, and it’s not all about—”
Joy doesn’t stop: “—it only gives you something to declare with certainty, even though it isn’t right for you—”
I try to break in again, but Joy keeps talking without a second’s pause, so I speak right along with her: “But, Joy, it is right for me . . . I had a DNR at Columbia—”
She keeps on. “—so, really, you should wait on this, think about it for a few days,” she says, “and talk with Scott about whether he thinks—”
“Joy!” I shout, finally. “You’re wrong on this one!”
I’ve known Joy to power through with unstoppable determination when making a point—going on and on without heeding any contributive words, even ones that agree with her. And I’ve learned to sit back and let her speak it all out; it’s what she’s used to doing at her job, after all, where critical business outcomes rely on her exceptionally informed opinion. But survival is my critical business, and I’m the one with the expertise that comes from hard work and a long, long tenure.
“Joy . . .” I say again, with less intensity, “if I don’t do the DNR now, it leaves open the possibility that I’ll have to call out for one in an emergency situation. And if that happens, no one will take me seriously—there will be stress and chaos and they’ll say I’m not of sound mind, or whatever the requirement is.”
She lowers her eyes. “Yeah, okay, that makes sense . . .”
“But you’re right about one thing . . . this is about control. I have to act now so I can have control later. I don’t want them coming at me with machines and defibrillator paddles. And now’s the time to protect myself from that.”
Joy pauses for a few seconds. “I hear you, I hear you. I do. Really. But”—she springs from the bed and claps her hands together once—“you know what I think it’s time for? Focusing your mind on life outside of this room!”
Oh boy. Here’s that exaggerated Joy again—the one who spun through my kitchen a few months ago in a flurry of determination to make tea. Joy can be the best listener and partner in figuring out the most complex challenges—but pushed to the emotional brink, she can bulldoze through a conversation and whip her can-do spirit into a frenzy. She wiggles her fingers at me now, moving them toward my forehead and then away, feigning power to plant a message in my head.
“I think you’ve been cooped up too long, and you’re forgetting that there’s sunshine out there and people smiling and enjoying the day—just like you’re going to do after your transplant.”
Oh—and now for the encouraging after your transplant pep talk. Joy knows better than that; she must be feeling terribly desperate.
Her intensified state, then, can’t just be about the DNR. Joy must also be reacting to the number on the wall that greeted her with its stark gravity when she arrived yesterday. And this is why she ran so long and tenacious on her no-DNR speech: she means to rearrange reality for me—proclaim that I’m down in the dumps because, after spending so many weeks here in the hospital, I can’t see the sunshine future that awaits me when I finally get out.
But, of course, I do see the future—and this, precisely, is the problem.
“When and if I get out of here, I’ll just be going back to a sick life, Joy. The same transplant body I had before. And this is a retransplant, so it’s going to be even more complicated.”
“How do you know?”
“How do I know? Seriously?” We’ve talked so many times about the antibodies and cancer risk that threaten second heart transplants like mine. “Oh, come on, Joy . . .”
“Well, I say come on . . . out of this room! And into the California sunshine! Never mind the future—this is what you need now!” She’s really on an optimistic, overwrought roll. “We’ve got to find you a way out of here. We will talk with Dr. K . . .”
This won’t help. I’ve already spoken with him about it several times, and he agreed with Dr. Lunchbox: I would need accompaniment by a doctor and nurse, which isn’t feasible given the crucial need for full staff at all times on this heart failure floor. Scott, however, came up with an alternative last week—a secret scheme whereby he and my friends would take matters into their own hands (no doctor or nurse needed).
“Never mind Dr. K,” I tell Joy. “You should talk with Scott. He’s got a plan to actually sneak me out of here. It’s totally not allowed, of course, and so I don’t think I should do it. Rules—”
“—are made to be broken!” Joy says. “If there were ever a time to break ’em, it’s now—I’m just saying . . .” She gestures toward a small plaque that Robin brought and set on my night table:
Well-behaved women rarely make history.
—Eleanor Roosevelt
“Maybe. We’ll see,” I say.
“No, no. This is exciting! I’ll talk with Scott about it tonight—can’t wait!”
“Can’t wait for what?” Lauren is back. She’s been in the hallway for a while—must have given Dr. Lunchbox quite a talking-to for accommodating my DNR wishes so swiftly. That’s the look on her face, anyway—peeved—like the mother who wanted to stop little Tommy from throwing broccoli but couldn’t, and then her husband went ahead and gave him the ice cream he’d been clamoring for.
We all want things our way—Lauren, Joy, and I. With our kids, our jobs, ourselves. Sometimes, even with each other.
We’re all after control.