Sick Girl, page 21
“I said I feel dizzy!”
The doctor turned his head toward a nurse and said something in an urgent mumble that I could not decipher, except for the final word: stat.
I froze: it was going to be the flat-line exam table all over again, wasn’t it? Sudden dizziness, tense doctors talking low and muted, nurses following orders, stat; one last look at the world around me and then there would be no world around me at all. No me at all. It looked like my transplanted heart was about to do me in, just like my own heart had done me in eight years earlier.
But not just yet. As far as I could tell, I was still alive. No blackness. No nothingness. I worked to free my arm from the restraint one of the nurses had fashioned out of an edge of linen, and then I slid my hand up and out of the sterile draping so that I could pull the plastic all the way off my face. No one seemed to notice.
I cried out into the open air, “What’s going on!”
The spiking lines on the EKG monitor got more attention than my shouting did. The doctor kept his eyes glued to the screen for a few more silent moments. Then he blinked once and spit out a prefab answer like some kind of programmed doctor robot. “Your heart is in spasm. We’ve given you something. To make it stop.”
“Spasm? What! How?”
“It happens. Sometimes.”
“Happens why?”
“I don’t know.”
“How could you not know? You’re a cardiologist! You do angiograms all day long!”
“Yes.”
“And there’s nothing more you can tell me?”
“We’ve already given you something. To counter it. Now we watch. And wait.” He nodded toward the EKG monitor.
I followed his glance over to the screen. The crazy up-and-down lines looked far from the “transplant normal” I’d come to recognize on printouts of my periodic EKGs. Something was wrong, and I still had the dizziness to prove it.
“Look, hey, um, somebody… please… I’m really scared here. Could one of you just… I need someone to… hold my hand… maybe?” My teeth had become chattering castanets, but I went on, clenching my jaw so I could continue my call for help. “Someone? Someone, please!”
No one. Sorry.
There were no less than six white-coated bodies in that cath lab—twelve warm comforting hands protruding from their sleeves. Yet I was left without a hand to hold. I was alone.
I was just a heart, beating ominously. Again.
The doctor let out a long loud deep breath, like air from a party balloon. I turned my head and saw him nod some kind of all-clear, and the nurses moved away from the table, back to their more typical duties. The spasm had finally subsided. This exam would now proceed on its way without further delay.
“Looks like we’re going to be together for a bit longer than usual today. I’d like to take some extra pictures, just to be safe. Hope you can put up with me for another few minutes,” the doctor said, the flow of his voice humming once again. “With the coming and going of that spasm, we weren’t able to see your arteries too well. We couldn’t tell what was disease and what was just spasm.”
The mention of the word disease triggered Dr. Fisher in my head—how he himself might have reacted to it: Oh, silly cardiologist, you’re not going to find any disease! I’m the miracle patient, don’t you know? I’m going to live thirty years.
Like hell I am.
In all the annual exams leading up to this one, I had been afraid only of what the angiogram pictures might reveal. But now I had a new fear—one I’d never considered, never picked up from a conversation in the transplant waiting room, never even heard Ellen mention. From now on I would fear not just what the angiogram would reveal but the exam itself and all the risks I’d signed away so glibly on the pre-op consent form. Spasm was printed halfway down the page, I remembered. So was heart attack and stroke. I’d never believed these would happen to me. Now I knew they could.
“I heard from the doctor already—great news! You got some great news today!” A jubilant Scott was already waiting for me in the recovery area when the nurse rolled me in on a stretcher. He kissed me on the forehead, all smiles.
I started to tell him that my heart did “some funny stuff” during the exam and I’d been “kind of scared.”
“Yeah?” He was feeling playful, still high on the good report he’d just heard, only half listening.
“They gave me something for it. After a bit, everything settled down.”
“Oh, that’s good. The doctor told me the pictures look fine. You’ve got beautiful arteries, my dear.”
I’m a miracle, right? A miracle that could have died on the table today, if you really want to know.
But Scott didn’t want to know. He shouldn’t have to know.
“Hand me that bag, would you? The one with the muffin in it.” I was hungry for some breakfast.
Scott broke into a wide grin and placed a fat blueberry muffin in my lap, along with a napkin. The day’s rituals had finally come full circle, the post-exam muffin being the last of them. And they’d all worked their good magic, it seemed.
Scott moved his chair alongside me and put his elbows on the edge of my hospital bed. Just as I plucked off the first bite of crumb topping with my front teeth and rolled it onto my tongue, he reached one hand down into his briefcase and pulled out the folded crossword puzzle, still only one quarter completed.
“Let’s do it,” he said.
So we did.
The following week, I returned to Dr. Fisher with a story to tell.
“Please now, concentrate,” I told him. “Imagine yourself on an exam table. There’s a plastic sheet draped over your body from head to toe.…”
I asked him to imagine that he was about to have an invasive cardiac procedure, a test that would act as a sort of diagnostic crystal ball, calling forth images in quick vivid X-ray flashes that would reveal the future of his heart. Whether he might die soon. Whether he was dying already.
“You can’t see anything or anyone. You can only hear and feel—the sound of your own breathing, the gallop of your heart. The doctors above you speak in muted tones that sound increasingly anxious. Suddenly you’re dizzy. Gasping. No, sir, it doesn’t look like you’re going to make it through this exam. You’re never going to get up off this table, are you? And there’s no one there to hear your good-bye. Don’t think for a minute that some cockamamie perspective is going to help you out now; the last few minutes of a failing heart don’t give a crap about how you choose to see it. Death will squeeze until there’s nothing left of you and your flimsy mind games.”
He blanched.
One of his hands went up like a shot, covering his eyes, while the other waved me away with frenetic outward sweeps into the air. “Oh, no, no. I don’t like to think about my own death. When I do, it freaks me out.”
Then Dr. Fisher pulled out his undaunted mind-over-matter perspective and held it in front of him like a shield, as reassuring and self-protecting as he willed it to be.
“I’m going to live forever,” he said.
Well, good for him.
23
IN SEPTEMBER OF 1996, A MIRACLE CAME MY WAY. I PUT MY CORPO-rate law job aside forever and welcomed this unexpected wonder into my life. It launched me on a hot-air balloon ride, up, up, and away from my usual self, so that for the first time in many years it was possible to experience a bit of unadulterated post-transplant enchantment.
My miracle was a baby.
I became a mother. Scott became a father. Our son was the miracle.
The cardiomyopathy specialist I’d seen years earlier in Boston—the one who’d rattled off a list of things I would never be able to do in my life, like climb stairs or play sports—had told me I would never have a baby. Even after my transplant, the baby news was not good. But no doctor ever told me I could not be a mother. I didn’t have to carry a baby in order to love and raise one. This vital point would remain unmentioned by two cardiologists who could not see beyond the scientific and biological mechanics of parenthood.
“I’m worried about the effects of a cyclosporine carrier on a fetus,” Dr. Davis told me, text book recitation style, after years of caginess and backpedaling.
I was a cyclosporine carrier. The drugs I took to keep me alive could harm my unborn child. Clarity rained down on me.
I wanted to be a mommy. I wanted to have a healthy baby.
In this thunderbolt moment, I felt like Dorothy at long last in the Emerald City, listening to the highfalutin argot of the wise but diminished Wizard of Oz. At journey’s end, I opened my mind and realized, as young Dorothy did, that I’d always had the power to do what I wanted; I’d had it within me all along. I’d had to embark on a four-year walk-and-talk down the yellow brick road with Dr. Davis just to come home again to what had always been there for me to discover: I could still be the mother I wanted to be without playing the role of “carrier.”
And Scott could be a father. The thought of parenthood was as much a joy for him as it was for me, and now with adoption in mind, what had seemed impossible for a heart-transplant couple was actually within our grasp. But there were still complications. Only two years remained of my life expectancy: would this mean our child might lose his mother before entering preschool? Scott gave a lot of thought to this question as the prospect of fatherhood became more real and concrete. He knew I might die. I knew it too. But we never talked about it, not until Casey grew to the age where my ten-year life expectancy had safely proved itself to be an underestimation. Only then did Scott tell me in a poignant moment, “I went into this adoption knowing I would probably wind up as a single parent before too long.”
But, he said, he was sure our child would grow up in a home filled with love, for however many years I was alive and then beyond them. Scott was secure in his own vast capacity for caring and nurturing; this child of ours would be adored forever. And Scott and I would have had some time together as parents.
Precious time.
On one Indian summer day in the early fall, the baby we’d yearned for was born. Beautiful Casey: restorer of wonder and awe, maker of dreams come true: seven and a half pounds of wiggling, gurgling, bottle-sucking inspiration. It was this tiny swaddled body nestled in the crook of my elbow that would make me think again about the words spoken to me by a cowardly psychotherapist: I’m going to live forever. Even if this was nonsense, I was going to try like hell to make it real—if only for the sake of this baby boy.
Becoming a mom can do that to a woman. Like everyone else, I’d read real-life stories about mothers who’d lifted off the equivalent of a bulldozer pinning down their children. I too would be a mother called to action by a perceived threat to my child; in this case the threat was made against my life, the fight was for it—against the odds. From the first time I held little Casey in my arms, I determined to be part of my son’s life for as long as possible. Or even for longer than possible. Please, I begged the great mother-strength that hums softly throughout the universe, let me live longer.
I was a mommy now. Mommies have to be there for their children. I knew what it was like to grow up with a mother who was absent even when she sat beside me at the dinner table, saliva dripping from her flaccid Johnnie Walker–numbed lips. My mother had been an obligatory carrier, a sufficiently cooperative presence for the time I grew within her, but soon after I was born she disappeared into a red labeled liquor bottle. That I might some day disappear from Casey—that my death might rob him of his mother the way alcohol had robbed me of mine—would turn me instantly busy with a diaper change or a frenetic round or two of “Row, Row, Row Your Boat.” I was his life source. This baby boy needed me—for fresh diapers, for soothing songs, for food, and for patient, loving attention when he cried out in the middle of the night. Adoption did not change the mother I would be to my son, just as pregnancy had not changed the mother that mine had been to me. At 4 A.M., as I lay on the floor beside a bassinette, ever-ready with a newly sterilized pacifier in my hand, I knew there was no escaping the demands of motherhood; certainly not with a scotch on the rocks, and—if I had my way—not even in death. When Casey’s hungry wail pierced the silence, I would jump from supine semislumber to loving attentiveness with the agility of an acrobat. And there, in the yellow glow of a little ducky night-light, I felt less like a sick girl than I had for as far back as I could remember.
My friend Ellen had told me there was something about being a mommy that could smooth out the sharp edges of a heart-transplant life and make a woman forget herself. Once, when Ellen and I were talking about the botched heart biopsy that explained the bloodstained bandage on her neck, she drifted into a faraway grin because her daughter had suddenly come to mind. She stopped the medical story and told me about Katie’s costume for Halloween, how she’d made it for her this year and how it had come out terribly lopsided. “Wow, Mom,” Katie had said to her, once contorted into the crooked jumpsuit, “you made it look even spookier!”
Some kind of terrific kid, huh?
What was a bloody post-biopsy neck when there was an angel child at home? Motherhood allowed Ellen to see beyond the stained bandages of her heart-transplant life. She made it plain to everyone she knew that her greatest happiness resided in her mommy moments—like when she made a peanut-butter-and-jelly sandwich and cut off the crusts. Standing in the kitchen with a smiley-face paper plate on the counter before her, there was nothing in Ellen’s world but two slices of bread, some filling, and a hungry little girl.
Even before I became a mother myself, I would come to see the power of motherhood at work in Ellen—and also in another young heart-transplant patient. There were not many of us at Columbia, so we were easy to spot in the clinic waiting room. I approached Marissa because I’d been told about a woman who’d given birth to a baby after undergoing a heart transplant; the description seemed to fit.
“You must be Marissa,” I said.
“Why must I be?”
“Well, I don’t see a lot of young women here at the clinic. And I’ve been told that now there’s another young heart transplant patient, named Marissa.”
“You think there aren’t a lot of young women in this place?”
“Oh, I really can’t tell for sure. I usually put these on when I’m here anyway.” I pointed to the small headphones that lay next to the Walkman in my lap. “I guess I don’t pay a lot of attention to the crowd. But you are Marissa, aren’t you?”
She nodded and stuffed two sticks of gum into her mouth, one after the other.
“Well, great. Because I’ve thought a lot about getting pregnant. And I’ve heard that you had a baby after your transplant.”
“Yeah, and?” she said.
“Well, wow, good for you!”
“What do you mean?”
Marissa clacked her gum loud and angry. Her nostrils flared.
“Don’t mind me. Maybe I’m just a big worrier—at heart. No pun intended.” She didn’t laugh. “Anyway, Dr. Davis got all weird when I asked him about having a baby. How ’bout you?” I assumed that Marissa and I had Dr. Davis in common.
“Davis isn’t my doctor. I go to the other guy.” Clack. Small bubble. Clack. “He told me just to do what I want.”
“Of course he did.”
And that’s what we’d all done, wasn’t it? One way or another, Ellen, Marissa, and I—we’d each done what we wanted. Ellen wanted to carry and love her daughter to the point where it overshadowed her three transplants and the grim likelihood of a fourth. Marissa too wanted to get pregnant and have a baby, and she refused to see her transplant as a good reason not to. And I wanted to be alive—for myself, for Scotty, and now for my son—for longer than my life expectancy was likely to allow; I would fight to lift my ten-year sentence the way I would a bulldozer crushing Casey’s legs. By becoming mothers, all three of our heart transplants became lighter loads to carry. More than a beloved hobby, a career, or even a husband, it was motherhood that brought us back to ourselves.
I savored Casey’s baby and toddler years, hoping I could slow them with vigilant, loving attention to every wonderful detail. But there was no holding on to time. Before I knew it, Casey was six years old and my watchfulness had shifted seamlessly from little boy to big boy—from park swings and blowing bubbles to organized sports.
Casey started playing soccer in the first grade; it was coed. The girls would stand on the field in groups of two or three, holding hands and plucking dandelions. When the ball came their way, they’d giggle. The boys would run after the ball in energetic packs, tripping over each other’s ankles as they all vied for the same kick that might skip along in the direction of the appropriate goal. After fifteen or twenty minutes of this hodgepodge scrimmage, it was time for snacks. And there would be Casey, running full speed toward the bag that held the pretzel rods, in a faster sprint than any on the soccer field that day.
Scott and I laughed. That’s our boy!
We were parents. How incredible. We’d never dreamed when we first got married that someday we’d sit on an elementary school field and watch our son run. Everything about Casey was a surprise and a delight.
As soon as Casey was old enough to understand sentences, we made it a point to cuddle up with him and recount his own special adoption story; I had put together a scrap book with drawings, photographs, and details of the day we flew to Texas to pick him up. Casey’s adoption soon became a natural part of our family history. There was no reason to hide how it was that we had come to be his parents. But there was reason to hide something else from him—or to protect him from it as much as possible. The secret we kept from our son was the true story of what my transplant was doing to my body. Casey didn’t have to know how sick I felt each day. There was no need to alert him when I went to the hospital for a heart biopsy or started another round of antibiotics to treat my latest infection. If I could keep smiling and do all the mommy things that Casey expected, why burden him with the truth? A three-year-old boy doesn’t have to know his mother is not well; neither does a seven-year-old or a ten-year-old. All things in good time. The best mothers are the ones who know when to hold a thought.
