Sick Girl pregame

[Pages:16]Excerpts of "Sick Girl," by Amy Silverstein

INTRODUCTION

As I stand here counting out three pairs of underwear and four pairs of socks, I think of the little boy who will reach into his suitcase and find them waiting there for him--as if by magic--along with everything else he might need this weekend. I thank the slow passage of time for keeping this son of mine young enough still to see the world as a seamless sleight of hand: a quarter behind the ear, the tooth fairy's dollar, a perfectly packed bag that appears out of nowhere. He doesn't yet need to know the trickery behind the wonders that come his way. He doesn't need to know how hard it is for his mother to stand here packing this bag: how tired she feels. How sick.

Today I create an illusion with a suitcase. On another day, perhaps, I might draw upon my famous French toast. I am the mother behind the curtain, after all. My son is my constant audience.

And thank goodness my hand is still quicker than his eye. I'll be sure to pack a book and a deck of cards, grape-scented kids' shampoo and a rain poncho--just in case. I will think of everything so this ten-year-old boy will be free to think of nothing: not my life expectancy, which ran out eight years ago, nor the handful of biggun medicines I took this morning that forced me to the floor, a mommy-ball of nausea curled up on a damp bathroom rug. No, there will not be any trace of my heart transplant in the suitcase I pack for my son today.

I'm one hell of a great magician. Hey, I think I'll toss in this mini-checkers set for the long plane ride. . . . Almost ready to zip the bag closed now, I fold his favorite football jersey with care, running my hands over the mesh material he calls "my holy shirt," and place it neatly on top of the pile. My son is leaving for the Super Bowl with his dad tomorrow morning. Lucky kid. I imagine them at the game sitting side by side, one pair of high knees next to one pair of low. Father and son in caps with matching football team logos, gazing ahead, rapt. The boy looks up at the man and smiles, sunlight glinting across soft bangs. The father smiles back. A memory is created. And while this is happening there will be a woman hundreds of miles away who can't catch her breath; she will not have taken her medicine while they were away and now her body has turned against itself, just as she knew it would. Her limbs feel impossibly heavy and there is no use trying to hold them up any longer; she must give in. This mother, this wife--this reluctant survivor--has made sure to leave herself no other choice this time; there will be no saving her. She can lie down on her bedroom floor in contented resignation. Now I don't have to try anymore, she will whisper into the carpeting beneath her cheek. I don't have to be a goddamn miracle. She will close her eyes for the last time--in peace.

There will be no loving greeting for the returning football fans. There will be a death.

Can I really do this? Maybe. I put my son's toothbrush in a plastic bag and place it in the small suitcase with the rest of his things. My feet carry me through the house now, but I feel I am floating, lost in thought. I pass by the family room, turn back, and peek inside the door; Scott still has not gotten up from the couch. He dropped himself there about an hour ago after driving home from our appointment at the hospital. The TV is off. There is no newspaper on his lap. He hasn't even called the office to find out if anything important went on in his absence this afternoon. Seeing him like this, I feel my stomach tighten with guilt and remorse: The man I love most in the world has chosen to sit alone in tormented silence, and here I stand ten feet away from him with no idea how to break it. I am the cause of it. Lingering at the doorway, I watch him for a moment and then continue down the hall, furious with my heart-transplant body for coming between us again. Seventeen years of circles around my health problems have not given us any sense of resolution. The illnesses continue to come in waves, and we find ourselves caught up in an undertow that pulls us both into a fight for my life that feels more and more compulsory as time goes by. And while Scott continues to fight on, unhesitant, for me there is no longer anything natural or automatic about it. Staying alive in this body has become an obligation for me that continually raises the question of why. Why continue in a perpetual lifesaving marathon when there is no possibility of a happy, healthy end? The answer to this question appears to me only in blurry glimpses from time to time--mostly in the calm short breaks between illnesses. Standing in my kitchen today, with my fingers curled around the handle of my son's Super Bowl suitcase, I am keenly aware that some people might say I hold the clear answer right here, right now, in the grip of my hand: the why for my continued fight for life could be--should be--my son. Or my husband--the man who is, I'm certain, the real cause behind the apparent miracle of my continued survival. The constancy of his love and the effects it has had on my longevity should be enough to keep me fighting forever. That's what people expect from me, I know. Which is why what happened at the doctor's today is such a sorry surprise: that I would hesitate before reaching out for another buoyant, gleaming white lifesaver tossed into the perilous riptide of my heart-transplant life. That I might not reach for it at all. Oh, I'd have to be a crazy person to do that. Or awfully selfish. I'd be called an ungrateful organ recipient. A bad patient. A bad mother. A hurtful, unloving wife. I place the suitcase by the kitchen door and take a seat on the wooden bench beside it. With my hands cradling the top of my head, I pull my neck

forward and let my face come down until I am looking at the floor between my feet. I notice Scott's worn-out pair of running sneakers peeking out from under the bench. Lined up just next to them is my own pair, even more battered. Seeing the evidence of our morning jogs aligned so closely this way, it strikes me for the first time how odd it is that Scott and I never go running together. From time to time he has asked me to join him, but I always say no, thanks, "I like to do my own thing," which is only partly a lie. I certainly do my own thing, but there is nothing about it that I like. Running miles with this transplanted heart is hell for me.

So is packing this suitcase. "I'm done with Casey's bag," I say. "He's all set to go." I've made my way back down the hall to the family room again and find Scott still there, still motionless on the couch. I'm hoping to rouse him with news of the motherly chore I've just accomplished. But I know that in the eyes of my husband a wellpacked suitcase is not a remarkable achievement. Not even for his heart-transplant wife-- the one behind the curtain who makes everything she does look so damn easy. How can I expect him to applaud effort that he cannot imagine? I lift Scott's legs up a bit and move them to the inside of the couch so I can sit down next to him. My eyes rest somewhere around his knees for now. I will not look up at his face until I get the all clear: a touch on the shoulder or an invitation like, "You know I love you, but--" I need some sign that Scott isn't irreparably angry at me in spite of how I failed him today. He lifts his hand off the couch and brings it down with a thump. "You were totally out of line with Dr. Davis. You yelled at him-- at your transplant doctor. The man who has kept you alive all these years. He doesn't deserve your anger . . . and he sure doesn't deserve to hear your suicide threats." "They're not threats," I say, keeping my eyes down. "If you remember correctly, I set up the appointment for today. I called Dr. Davis. And he was nice enough to sit down with both of us--for over an hour--to work this thing out. Find a way to make your life more livable. But you attacked him like it was his fault. And then you tell him--and me--that you're going to stop taking your transplant medicines. How is he supposed to react? I mean, come on. What do you want him to say?" I'm not sure how to answer this. The truth is, I'd like to hear Dr. Davis say that it's really okay with him if I go now--that I've done an amazing job in this body and that I've withstood more than any one person should. I'd like to hear him agree with what I've said all along: my life was not really saved back when I was just a twenty-four-year-old law student with a virus in her heart-- no, my life was taken away by this heart transplant and I can't expect to ever have it back, not even a small slice of it. I'd want him to say that he is proud of me for hanging on for seventeen years: with two strong hands, with bite, and with effort, intelligence, and an appearance of normalcy that have been astounding. I'd want Dr. Davis to honor me and let me go.

But instead, I tell Scott, "I don't know what I want him to say." "Well, then, what am I supposed to say? When I ask your doctor to meet with us and then you dump all over him. When I hear you go off about how you won't take your medicine. How do you think I feel?" "It must be awful." The words sound flimsy, even to me. "Do you realize that since this whole post-transplant lymphoma thing came up last week, you must've said to me ten times that you want to end your life? And I listen to you. Then there are hugs and more listening. We spend a lot of time talking about it. And you're still saying that you want to give up and die. I schedule an appointment with your doctor. I'm supportive. I'm there for you. But the sadness, the anger, the suicide talk--they just keep coming. There's no end. It just goes on and on and on. . . ." That's why he feels frustrated and fed up, he says; it's not so much the nature of my complaint (Scott says he understands how a cancer threat, in addition to my heart transplant, can force me to the very end of my rope), rather, it's the endlessness of it that wrecks him. He needs a break from my anguish--or at least from the way I express it and how often. I tell Scott, though I'm not sure he believes me, that I truly want to give him the break he deserves. I want to make things easier for him. The suitcase, for instance. I packed it so he wouldn't have to. I don't tell him that my heartbeat felt terribly wrong the whole time I did it. I keep from him the details of the crippling nausea I felt; the trembling hands that challenged me to button and fold my son's shirt without breaking into tears. But I know Scott is not interested in suitcases. He wants an end. So do I. We just see this end differently. Scott would like to see the end of my despair; I want to end my suffering. They are not the same wish. I lift my eyes now and look into Scott's for the first time since I sat down beside him on the couch. He looks back at me through a haze of weariness. Selfblame rises up in me: I haven't spared him enough; I haven't thought of him enough; I haven't kept enough of my heart-transplant self behind the curtain. Or maybe I've kept too much of me there. Perhaps there is a price to be paid for hiding the truth about how I live in this body, and I am paying it now: being misunderstood. My family will leave for the Super Bowl tomorrow morning. They will go on my insistence; I would not allow an acute flare-up of my medical problems to hold them back. Scott bought these game tickets months ago, after all. Casey has been counting the days. And besides, I don't feel especially sick or weak. I jogged this morning: a nod to Scott that I'm bouncing back from the crisis that culminated in the showdown with Dr. Davis, and that it is okay to leave me. Bathed in the green light I have given him, Scott will wake to an early alarm clock, walk down the hall to our son's room, and find him there, already up. Casey will spring from the bed, throwing the covers away from his body in one

swift move. Then he'll soar down the stairs, taking three at a time--in his pajamas.

Scott will have to call out and remind him to put some clothes on. Right! Clothes! Then there will be a few moments of commotion as father and son begin rummaging through drawers. Scott will pull out a pair of pants that are too small. Casey will grab a sweater that is way too warm for where they're headed. Then, in the same moment, they'll turn their heads and notice the jeans, T-shirt, underwear, socks, and lightweight zip-up sweatshirt folded neatly on the chair. A grin will come up between them as they realize, in silence: It was Amy. It was Mom. And I bet she packed my suitcase too. Of course I did. But I'm not sure if I will be here to unpack it as well. Over this Super Bowl weekend, I will spend a lot of time thinking about endings. And beginnings and middles. Heart viruses, hospitals, and being saved. Bravery and hope. Reluctance and resignation. And responsibility: to a son, a well-meaning doctor, and a husband who must be some kind of angel. Love is exhausting.

CHAPTER ONE

My heart transplant was there in the lines of my father's palm. Madame Clara saw it right away. She was not just another fortune-teller with a shack along the Atlantic City boardwalk; Madame Clara was a gifted seer (or so her sign said). She knew that a man like my father, middle aged with a fine leather belt and Gucci shoes, along with my stepmother, Beverly, a well-kept blonde with country-club good looks, would be likely to doubt her psychic advice even as they sought it. They were casual drop-ins: the kind of customers who wander in on a lark, husband pushing wife or vice versa, with a playful nudge. "Aw, come on. . . . It'll be fun." If people like this were ever going to take her seriously, Madame Clara figured they would have to be eased into believing. She'd first have to dazzle my father and Beverly with some facts, things only a true fortune-teller could read in the crisscross lines and intricate folds on the underside of my father's right hand.

"You are in a family business. There is stock involved," she said, offering up the first evidence of her clairvoyance.

"Well, you got me there. Score one for the great Madame Clara!" My father was in a playful mood as usual, ready to challenge the dark-haired woman sitting opposite him with fast quips and charming good humor. "Seems you know me like the back of your hand--or my hand, as the case may be."

She continued intently, her black eyes unwavering. "You have an important deal in the making; it will fall through. Do not feel distressed when this happens. Something bigger awaits you."

"Bigger than a bread box?" Madame Clara laid her pointer finger on the center of my father's palm and traced a diagonal line slowly, stopping at points to whisper their significance. "Respect. The rewards of hard work. Bounty." "Await me, right?" She looked up from his hand. "Yes, but only after a disappointment. You will not get what you have been seeking." These words had significance for my father. The year was 1984. He was in the process of trying to sell the family business that his father and uncles had started some forty-five years earlier, which had grown to become a publicly traded company on the Stock Exchange. On the day my father offered his palm to a fortune-teller for the first time in his life, he believed he held in his pocket a firm offer from a large conglomerate to buy the business for a share price that was more than respectable. It was an imminent coup; the company had fallen on hard times and my father was one of the major forces to save it, with tough decisions and careful maneuvers that included firing every last family member who had long become a useless fixture. He was not a popular manager at first, but his efforts breathed not only life but unprecedented productivity into the company. To pull off a sale at this point would yield a profit for shareholders, including the cousins he'd sent out the door. Did Madame Clara just tell him that the deal would fall through? My father grimaced. "Oh, Arthur, don't be ridiculous," Beverly said. The sudden furrow in my father's brow told his wife just what he was thinking. She grabbed his forearm and gave it a little shake, followed by a couple of reassuring pats. "Well, for Pete's sake, there must be something else in that hand of his, Madame--ah . . . Clara?" She forced herself into a grin but there was nothing cheerful about it; Beverly's expression was flat-out imploring. It was time to change the subject, and Madame Clara was ready. She had been holding back but would now reveal the prophecy she may have seen and had been reluctant to mention: that one of my father's two daughters would become very sick. My father had not told her he had any children at all, let alone two daughters; the fortune-teller had hit upon another truth. There was Jodie, who'd just graduated from college, and her younger sister, Amy, who still had two years to go. Both were healthy young women. "There will be a surgery--a serious one. And a miraculous recovery. The daughter will be okay." "Splendid," my father said. "Next time, let's stick to the collapse of my business deals. It's more fun." Madame Clara shrugged. "I see what I see--dark and light."

"Maybe I should have washed my hands first," he said. My father reached into his pocket for a twenty dollar bill and handed it to Madame Clara with a wink. "Thanks for the memories!"

Or at least that's how I pictured it. My father had recounted his fortuneteller story so many times it ran like a movie in my head. The first time I heard it, Madame Clara's prophecy about the sale of the family business had already come true: the original deal had fallen through just as she said it would, only to be replaced several months later with a different buyout arrangement for nearly double the price. Dark and light--that's what she'd told him. Oh, she was right. Madame Clara was the real McCoy. What a story!

And what a nightmare: there had also been a prediction about an illness. My father had to keep this part quiet and hope with every bit of the skeptic still left in him that it would not come true. But the amazing Madame Clara had turned him into something of a believer. The best my father could do was push the sick daughter prediction to the back of his mind, stay silent about it, and wait for the passage of time to prove that the fortune-teller's insights had been imperfect.

Three years later, illness hit me hard and fast; I would undergo the serious surgery that Madame Clara had foreseen. My sister, Jodie, would remain healthy. In time, I would move on to a recovery that was every bit the miracle that had shown up in my father's palm. But the fortune-teller had also said that I, the sick daughter, would be okay; this part of her prediction was flawed. While I would, in fact, survive for a surprisingly long time after surgery, nothing about living with a fragile heart would ever be okay with me. This is not to say that Madame Clara was wrong. She was, after all, reading my father's palm, not mine, so whatever she drew from it would naturally reflect his perceptions and experiences to come. My father, like nearly everyone else in my life, would always see me as okay in my post-surgery body. Perhaps Madame Clara had not misread his future at all.

But she'd misread mine. Months before I would sense the first inkling of a heart problem, I took a short trip to Atlantic City with my boyfriend, Scott. On my suggestion, we sought out Madame Clara's shack on the boardwalk and there it was, right where my father said it would be. Scott was reluctant to go in. The whole fortune-telling thing gave him the creeps, he said, even while parting the glass beads that served as the door to the reading room. As Scott took his first tentative step inside, I reached down and pinched his butt cheek, hard and quick. Into the air he flew, with a gasp.

"And I didn't even have to yell boo!" I teased. "I'll show you boo!" He spun around and grabbed the sides of my waist, squeezing in spurts that brought me to breathless laughter within seconds. Madame Clara emerged from behind a makeshift curtain and sat, annoyed, behind her crystal ball. I squirmed out from Scott's clutches and brought the fun to an end, knowing I was in the presence of the great seer who'd predicted, with amazing precision, the fate of my family's business. It excited me to think of what she might say about my own destiny; I'd just finished my first year of law school at NYU, and I was in love--real love--for the first time.

I offered up my palm. This had to be good. Madame Clara fell silent. Her eyes went soft and out of focus, almost as if she were refusing to look closely into my hand. I felt the urge to help her along. "Um . . . will I have children?" "I see four," she said. "What about health?" She turned my hand over and patted the top of it. "Health looks good. You will live a long life." This was the end of my reading with Madame Clara. She charged me only five dollars; it lasted less than three minutes. Scott kept his palm to himself.

A good fortune-teller is focused on the hand in front of her. Hands contain lines; they are simple to read. But faces--especially young attractive ones--are more complex. And when they're attached to lean, youthful, unblemished bodies, faces can be misleading. Even obscuring.

The diagnosis of my illness might have come about differently had my family doctor studied a little palmistry. Or maybe if he'd closed his eyes and just listened to what I was telling him instead of being blindsided by the pretty firstyear law student sitting on the exam table wearing nothing but a light blue hospital gown. It does not take tremendous beauty to throw an Ivy League? educated physician off the scent of a menacing illness. It's the coming together of circumstances that will do it--with or without a mane of long wavy hair and a perky bosom. Take an admittedly studious, overachieving twenty-three-year-old woman at a highly competitive law school; give her tightness in the chest and a couple of episodes of passing out; send her to the doctor's office, cheerful and brighteyed, with a bounce in her step; and have her giggling at his jokes and at the first touch of the cold stethoscope on her back. Together, these can be enough to make any doctor assume, at first blush, that there is nothing terribly wrong with this young woman.

Dr. Clark gave me the obligatory exam. He looked into my eyes with a light and my ears with a scope. He asked me to touch my nose and walk in a straight line. Then, after listening to my heart for a few seconds, he mentioned casually that he'd heard a slight clicking that I "might want to get checked out sometime." He was thinking mitral valve prolapse, a generally benign condition that could possibly explain the sound he'd heard. Then he took my blood pressure; his eyebrows shot up almost to his hairline. "Wow, that's low!" he said.

"Too low?" "Aw . . . what's too low?" I didn't know what was too low. That's why I was asking. "Could it be why I've been passing out?" "Sure! You should salt your food. Lots of salt. Salt it all, if you like." He told me I should consider myself lucky to be one of the people who didn't have to

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