My Glory Was I Had Such Friends, page 24
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.”
9
“All rightie then—how ’bout now I show you the little surprisey-poo I’ve brought with me?” After a morning of mostly solemn talk we’ve hit a lull, and Jill decides at once to shift the mood by taking her voice up an octave and laying on the silly, sarcastic edge that is our nonsense way. “I’m so ex-cccited!” she adds, going even higher in tone while pulling her suitcase from under the cot. “Surprisey-poo-poo!” she trills again.
I play along, matching my intonation to hers. “Is it . . . bigger than a bread box?”
“Well . . . it’s definitely funnier, I’ll tell you that.” She unzips a compartment and retrieves a plastic bag.
“Ah, so it’s funny—hmm. I was thinking it might be a new heart you’ve got in there.”
“No, sorry, but it does have to do with something that goes thumpity-thump, if you know what I mean, and I know you do!” She flashes me a twisted smile from where she’s kneeling on the ground, “I’m referring to love, of course—try to keep it clean, you perv—”
“You’re the perv.”
“I know you are but—”
“What am I?”
We’ve become eleven years old again, total goofballs, and I’m feeling a lot lighter for it. Good thing it’s just Jill and me in here, so that we can let loose. Jody has already come and gone for the day, and Leja isn’t due to arrive for another few minutes. We wouldn’t dare indulge in this ridiculous banter in their presence.
Jill sits down in a chair with the plastic bag on her lap. “Now, close your eyes. I’ve got something to read to you.”
“All right.” I quickly close them, but Jill delays with deliberate pause.
“Ahem, ahem”—she means this to be a dramatic reading. “I’m going to skip right to the good part, ahem—” There’s a rustling of pages. She goes high pitch again:
They sit at their usual table in the back. The restaurant is dimly lighted and warm, and their hands are sweating because they are holding hands and they are always afraid someone might see. “Barry, there is something I have to tell you . . .”
My eyes pop open. “You still have a copy!”
“Not just a copy—the original! Get a load of this . . .” She shuffles the collection of pages and turns the top one toward me. “I think this is your cover art, right?”
“I can’t believe it—yes!” The colored-pencil sketch I made in the sixth grade stares back at me, faded out by time, but clear enough to decipher the three red hearts I drew inside a large blue triangle, as well as the title of Jill’s invention—Triangle of Love. I reach out for the makeshift book. “Let me see that!” It has been almost forty years since I held it in my hands.
“You’re gonna laugh!”
I begin flipping through the pages. “Barry! Caroline! Ha-ha . . . talk about pushing the envelope!” Our sixth grade teacher’s first name was Larry, and the teaching assistant in our classroom was Carol. I remember how it made us feel to write something so provocative; aiming our sexy story at two adults in our everyday life was, we thought, ingenious and a sure mark of our maturity.
“Take your time—read all the way through,” Jill advises. “Then we’ll talk. I’ve got to call the office anyway.” She reaches for her laptop.
“‘Triangle of Love, by Amy and Jill,’” I read aloud, turning the page. “‘Dedicated to everyone who falls in love.’ Oh please! What was wrong with us?”
“You don’t know the half of it. Read on . . .”
Leja walks in just then and flops immediately into Lauren’s chair near the door, flushed and trembling. “I see just now something so sad!” She thumps her open palm against her chest, catching her breath before more words spill out. “In the waiting room! A family! Seven or ten of these people, they kneel on the floor to praying. I stop and I look—for who is it they pray? And I talk with one of them. Oh, this is a terrible . . .” She brings her fist to her mouth and shuts her eyes tight.
Jill raises her eyebrows at me, curious but not surprised. She has known Leja for as long as I have and is plenty familiar with the intensity of her emotions. I hold up my hand to say, Give her a few seconds . . .
Leja shoots up from her chair and begins to pace. “The woman, she is thirty, and she is wait for a heart transplant in the intensive care. Husband, children, brother, cousins, kids—all in the waiting room . . .” She continues on, interspersing the story with words like antibodies and total artificial heart and Swan-Ganz catheter. I am impressed with Leja’s knowledge, and the careful, exacting attention she pays to all she encounters here at the hospital, in spite of being overwhelmed by it. “So will be very long time before she can get heart. She has many, many antibodies like you do, but she can’t be 1A because her kidneys, they do not work. Her creatinine is more than three, her husband tells to me.”
Leja even understands creatinine blood levels as a measure of kidney function. She’s been following my levels each day, after all—listening intently when Dr. Kobashigawa reassures me that my kidneys are doing remarkably well under the circumstances, and then repeating his words back to me later on when I imagine that my bloated feet mean kidney doom. Using real medicine as a resource is a marked change from the naïve and superstitious Leja, who, for as long as I’ve known her, has believed that cold drinks are actually the cause of the common cold. These two months in a hospital room have taken her medical acumen far beyond the Croatian old wives’ tales that had been her prior source of reference.
But just about everyone on Six South is sick enough to warrant ICU stays and hallway prayers from family members, and Leja knows this. “They’ll probably give her dialysis to support her kidneys, and she’ll be back on the list soon,” I reassure her.
“Yes, they can do . . . But her family, they are so poor and they can’t to afford sleep in a hotel room in LA, so they must to live in the waiting room! They tell me they do not have a shower in so many days. They also do not have food enough . . .”
Leja explains that the extended family has rotated week to week in a vigil for this relative, who has been hospitalized for over two months now. They all live in northernmost California—about a seven-hour drive from Cedars—so they can’t make the trip daily. They are thankful not to be chased out of the waiting room after hours. “The security guards who walk in the night, I think they are pretend not to see this family sleeping there, could be.”
She’s probably right. I’ve gotten wind of out-of-towners and their families being handled with sensitivity by Justin, Lachalle, and other staff who tend to the sixth floor. It seems a significant percentage of pretransplant patients come here from distant states or even foreign countries, having been sent by their local cardiologists because of Cedars’s unique specialization in the most complex challenges—including dangerous antibodies like mine. Previous transplantation is not the only cause of troublesome antibodies; there are other patient groups who suffer this complication as well, including those who have had blood transfusions and women who are highly sensitized from pregnancies.
During my heart transplant orientation when first arriving at Cedars, I talked with a few of these relocated pretransplant patients who, like me, followed their doctors’ urging and headed to LA. Of course, there was a good deal of commiseration about the financial burden of living in LA for an indefinite period of time. Scott and I have been extremely fortunate in this regard: Scott has been able to continue to work at his job via Skype and conference calls. But many patients I’ve met have had to ask for donations from their communities, Internet crowd-sourcing sites, or Facebook to help finance their long local stays. A couple of them said they might have to sacrifice college tuition for their children to pull this off. And now Leja has discovered the direst situation yet: a family contending with circumstances that has them sleeping in the waiting room for months at a time.
I tell Leja that we need to think about how we might be able to help this family. “Maybe Scott can invite them to the bungalow so they can all take a shower. Or maybe we can buy some sandwiches for lunch tomorrow. I don’t know—it seems too small, but we should do something . . .”
“Yes! We must to do something! I will go tell to Scott now, okay? Then I must to leave for the airport.” Leja was scheduled to fly home that afternoon to see her daughter. “I am sorry, Jill, that I cannot give you break.”
“I don’t need one,” Jill says. “You need to get home for a few days of rest.”
“No! I am not tired! It is okay to me!” She sweeps through the room with purpose, picking up bits of paper from the floor, tidying my night table, and refolding the throw blanket at the foot of my bed. “You have dirty laundry I can to take to bungalow!” she insists. (I don’t, really, but I understand that concrete tasks calm Leja’s nerves.) She opens my closet and holds up various clothing items, sniffing and inspecting. “This jeans? This shirt?”
“Take both, sure, great. Thank you, Leja.”
She stuffs them into a plastic bag. “I go now and I talk with Scott when his business call is end. Bye!” She spins out the door, and the walls seem to exhale with relief.
“A woman on a mission—jeez, it’s exhausting,” Jill says.
“That’s Leja.”
“All that emotion—”
“The family in the hallway must’ve pushed her over the edge. She’s seeing all kinds of sad things here. We all are. I mean, have you noticed there’s a code blue announcement on the loudspeaker every few hours? It’s a death knell. It means heart attack or breathing failure. The sights and sounds of this place can leave your emotions super raw if you let them. So”—I pick up the booklet I placed aside when Leja raced in—“let’s get back to the fun stuff.”
“Perfect,” Jill says, reopening her laptop. “Tell me when you’re done reading.”
I settle into the pages again . . .
Her hair is long and straight and his is short and there is a small bald spot that should not be there because he is only thirty. She is taller than he is when she wears her platform shoes, so on this day she picks low heels . . .
Jill interrupts, “Hey, Ames—do you think it’s allowed? Sleeping or praying or whatever in the waiting room overnight—you think the hospital is okay with that?”
I shrug. “Sometimes when a patient’s condition is so precarious, family visitation rules get stretched really wide—it happened to me at Columbia. And the woman who’s in the ICU here . . . if she’s got failing kidneys and high antibodies, they’ve got to keep the family close, right? Her chances of survival are slim, sad to say it, and I don’t mean to be a pessimist, but . . .”
“I get it. That article you sent me explained things—it’s all pretty grim stuff.” She bites down, and her lower lip disappears beneath her front teeth.
So Jill read it after all . . .
The article—a study published in a prominent medical journal—set out gloomy data on heart transplant mortality (especially retransplants), making clear that even if a patient lives to receive a retransplant, he or she may not survive very long after. Antibody-mediated destruction of the donor heart is the most serious threat to longevity in cases like mine, followed second by the high risk of immunosuppressant-related cancer (a risk that increases exponentially with accumulated years on transplant medications). If first-transplant lifespans tend to max out around ten years, second ones could be half that.
