by Jill Wolfson
“I don’t know. I didn’t have the guts to go through it by myself. My mom offered to … but I … since it was your idea and everything, I decided to wait.”
“So what are you waiting for?”
I undid the metal clip and peered inside.
Where to start?
I cleared a corner of Milo’s bed, careful not to disturb any of the tubes draining fluid from his body. Then I dumped the contents of the envelope, a mess of papers, onto his blanket. There was a small, sealed white envelope – READ THIS FIRST – and a typed, half-page letter inside that began: So you wanna know about Amanda…
I read it aloud. Milo’s eyes closed, but he didn’t drift off into Painkiller Land. I knew he was paying careful attention because of the sounds of surprise at the appropriate parts. It was an amazing letter, and not because of any college-level vocabulary or fancy turns of phrases. I don’t mean any disrespect when I say that Tyler wasn’t the best writer in the world. I mean, best in the traditional school-writing sense. In every other sense, this was the most perfect half-page letter that I had ever gotten in my life, perfect because it was both a total surprise and exactly what I had been waiting for.
I guess I could go on and on about who my sister was, but that would be just me interpreting. It would be more about me than anything else. So I decided to let Amanda speak for herself.
That’s what all the enclosed papers were about. They were documents from her computer, printouts of what appeared when he searched for the word heart. I could do with them what I wanted. That’s what Tyler wrote: Do whatever you want with them – they’re all yours now. U don’t have to give them back.
End of letter.
There was no order to the papers, nothing stapled or paper-clipped together, no comments or suggestions from Tyler scribbled in the margins. I started reading at random, kind of frantically, my eyes latching onto whatever word or phrase happened to jump out:
Science lab report: The frog heart has three chambers: two atria and a single ventricle. What do we humans gain by having four chambers? What are the secrets of a three-chambered heart?
Monday: memorize first two lines of Shakespeare sonnet – Betwixt mine eye and heart a league is took, And each doth good turns now unto the other – I’ll never get this right!!!!!!!!!!!!!!!!!!
To-do list Wednesday: Write own sonnet based on Shakespeare sonnet. What rhymes with heart? Art, bart, cart, carte, chart, dart, dartt, hardt, hart, harte, hartt, heart, mahrt, mart, marte, part, parte, schardt, smart, smartt, start, tart, tarte, tartt, apart, bossart, depart, descartes, goulart, impart, kabart, mccart, mccartt, restart.
Alas, Descartes, you are tearing me apart at K-mart.
One of the papers was a numbered list of “heart” phrases and clichés that I read aloud: “Heartburn, eat my heart out, heart in my hand, deep in the heart of Texas, heart of the matter, heart-to-heart…”
I paused, asked Milo – “Why would anyone go to the trouble of making a list like that?” – didn’t get an answer from him and went on reading. “The key to my heart, black heart, my heart isn’t in it.”
And more, plenty more, a copy of an e-valentine and a photo of a heart-shaped box of chocolates and more science class papers and more poems and drawings and pictures that were in some way heart-related. I didn’t know what to make of all this. I didn’t know what they added up to.
“They must mean something,” I said.
“Why?”
“Why else would Tyler bother to send them?”
A yawn. Milo’s voice, dreamy. “Maybe he just wants you to have them, hold on to them.” Another yawn. “Keep them safe.”
Safe? Safe from what?
I moved my hands through the papers like I was clearing soap bubbles from bathwater, waiting for something hidden to surface.
And that’s when it hit me – an understanding – the way that the feeling of missing a person can leap up and tug you toward it like gravity. If someone took care of these papers, if they weren’t lost forever in a broken computer, if they weren’t dumped in a garbage bin, they were here. They existed. And so in a way did Amanda. She was safe. Safe from being forgotten. Tyler needed that. And of everyone in the world, he trusted me – me! – to safeguard them like they were my own.
And here’s the thing: The papers were my own. I wouldn’t be giving them back. But I didn’t need to feel creepy or guilty about it. Because the papers were also still Amanda’s. Not part hers and part mine. All hers and all mine at the same time. I know this doesn’t make sense in any logical, ordinary way. But sometimes you have to hold on to two contradictory truths. If you’re going to live in the world, you have to learn to live with that.
I could live with that.
Milo would know what I meant, but he had dozed off. There would be plenty of time to talk about it later. His hand loosened, and the paper he was reading – the one with all the heart phrases – fluttered to the floor.
I picked it up, added it to the others, and clutched the stack of Amanda’s words to my chest.
THIRTY-THREE
LET’S START WITH THE quick version of my life. When I was born, I almost died and then I didn’t and then I got into collecting Beanie Babies and then I … but I already mentioned all that, that was way back … so then I had my transplant and got a couple of infections and got better and experienced some rejection that freaked out everyone. But Dr Alexander came to the rescue with more pills so I didn’t have to go back into the hospital.
And then I went back to school and was a minor celebrity for a while. The Girl with a Dead Girl’s Heart. I put up with the whispers and the SSSers (Sappy Sympathetic Smilers). But you can’t believe the impolite questions some kids just came out and asked. Way too personal. They left me tongue-tied at first, and I couldn’t think of anything better than a lame Mind your own business. But Milo helped me with some perfectly timed comebacks – “Yes, I’m going to die. You will, too, if I breathe on you” and “Yes, I feel like an alien, because I am one” – which made most people shrivel into nothing or stutter in apology.
Then my school counselor said that I had to take Algebra 2 when I couldn’t remember a thing about Algebra 1. She did not want to hear about how I almost died. She said everyone needed to know how to isolate like terms.
I made the school debate team.
And then Milo finally asked me to go to a movie with him. He was still recuperating, so the movie was in his house. His mom kept wandering into the living room to offer popcorn and drinks and to make sure we were just watching a movie. Which we were, most of the time.
And then one afternoon, I had a total, complete flip-out and told Mom that she needed to back off and stop treating me like a pathetic little invalid who was going to die at any minute. She needed to stop micromanaging every little thing in my life and she needed to get her own life. That’s what I said, “Beth! Get a life!” So she acted all hurt and horrified. But then without making a big deal over it, she signed up for a Saturday afternoon knitting workshop. I guess that’s a start.
For my birthday, Mom got me a kitten. Gray with white paws, which we named Barney, short for Christiaan Barnard. That’s a bit of insider transplant humor. Look it up if you need an explanation. Plus, because of my oh-so-delicate immune system, Mom splurged on an automatic, self-cleaning litter box, sale price $89.95. We saw it advertised on TV. Worth every penny.
But before all that, one of the first things I did was to clear a space on a corner of my bedroom desk. That’s where I keep the stack of papers that Tyler sent to me. I placed a candle on one side of it, and a small photo of Amanda on the other. The picture came in Tyler’s next letter, and I put it in a simple frame.
I don’t want to give the wrong idea here. It’s not like I set up a creepy religious shrine that’s elevated Amanda into my personal Saint of the Holy Heart. I don’t bow or pray to the picture or have sob sessions every time I look at it. I only cried the first time I put it on my desk. I lit the candle and it filled my room with a lovely s
cent of mango.
Honestly, there are now whole days that go by that I don’t do more than glance at the picture and the papers. But I’m always aware that they’re there. Safe. In my warm hands.
THIRTY-FOUR
AT FIRST TYLER’S MOM was furious that he had gone behind her back and kept all the letters from the organ recipients. After getting that reaction, he decided not to tell her how he had spied on the heart girl. But Claire eventually conceded that it was probably for the best. She was ready now. She wanted to read the letters.
They sat at the kitchen table. Tyler handed them to her one at a time. She read, passed the page to her ex-husband, read another. When she finished them all, her mouth opened; no sound came out. Her right arm reached across the table and covered Tyler’s hand with her own.
In Jewish tradition, a year after a death, there’s a ceremony called an unveiling. The newly erected tombstone is covered with a cloth. After prayers and words of remembrance, it’s removed by the family. The Schecters decided to keep things simple. No specially engraved invitations, no big open house after the graveside ceremony. No one wanted a repeat of the three-day madhouse of the shivah. So it would be only family and those who mattered most in their lives.
THIRTY-FIVE
THERE WAS NO ETIQUETTE book for me to turn to. Nobody ever wrote Miss Manners to ask, How do you greet the parents of your heart donor? A firm handshake? A lovely hostess gift?
And when standing by the grave, where do you keep your eyes focused? What do you do with your hands? What do you do if everyone else is crying and you’re not?
What if you’re the one who starts sobbing?
What if the family instantly hates you?
What do you wear?
What do you tell strangers if they ask, “And how did you know Amanda?”
What if you say the wrong thing?
What if you trip and fall facedown across the grave?
“Just because they invited us doesn’t mean we have to go,” Mom said. “They’ll understand.”
But like I said, there’s no etiquette book for this particular situation. How do you turn down an invitation from someone who’s given you your life?
Tyler noticed them first as they walked the winding path from the parking lot to the gravesite. He couldn’t read her expression and wondered if she really wanted to be there.
Thank God! It was only a small group of people. Everyone was talking and hugging, too busy to notice us. Then the brother turned. I couldn’t read the expression on his face. I wondered if he really wanted me to be there.
Tyler touched his mom gently on her shoulder, gestured in their direction with his chin.
The mom looked directly at me. I didn’t know what to do with my mouth. Smile? Frown? Who knew a mouth could be so much trouble? I looked down at my feet. I let Mom take my hand, even though I was too old for that. I needed to feel her. I kept walking, worried that I was kicking up too much gravel.
The two women approached each other with slow, small steps. They didn’t shake hands. They didn’t hug. Claire said something to Dani’s mother, who nodded once.
“She’ll understand if you say no.”
“I want to,” I told Mom. And then Amanda’s mother was standing before me. “It’s okay with you?” she asked. “Just for a minute?”
Claire didn’t have to stoop much. A slight bending of her knees, the wrap of her arms, a tilt of her head and her right ear rested on Dani’s chest.
It was as if all the other hugs of my life were only partial hugs, hugs where someone pulled back because they were too shy or polite or their minds were elsewhere. Or because they didn’t want to feel whatever was behind the hug. It might hurt too much. It might burn. But I could feel every bit of Amanda’s mom hugging every bit of me.
Tyler was thinking about how much life existed at that moment. A woman in Florida reaching out to hold her great-grandchild and a teenage boy with a new liver kissing his girlfriend and a firefighter with new lungs pulling someone from a burning building and a girl eating chocolate and a third-grader playing with her friends. And his sister in her grave, but her heart still beating and his mother listening to the steadiness of it.
My eyes met Tyler’s.
I counted to eighty. Eighty beats of the heart.
Amanda’s heart. My heart. Our heart.
ACKNOWLEDGMENTS
I want to thank the many organ recipients and donor families who shared with me their personal tales. Thanks especially to Sarah Sabia, Laura Simons and the entire Castellanos family. This was not an easy topic for them, yet they were willing to share with me the emotional complexity of the transplant experience.
Mary Burge, the social worker in the pediatric heart transplant unit at Lucile Parkard Children’s Hospital, was an amazing guide. She graciously shared with me her decades of experience and insights, and introduced me to children, families and medical staff. She encouraged me forward and read every word of this book, offering invaluable direction. Also thanks to others at LPCH who shared their stories, advice and medical knowledge, especially Dr David Rosenthal. Any mistakes are my own.
Cathy Olmo and Anjie Nix of the California Transplant Network provided technical details of the transplant process, their personal experiences and perspective from the donor family’s point of view. Again, any errors are my own.
A big thanks to my friend, journalist Sara Solovitch. When I told her I was thinking about writing a novel about organ donation, she immediately shared her own interviews, stories and contacts from years of health reporting. Doors opened because of her.
Kate Farrell, my editor at Holt, encouraged this book from the beginning. Her support and editing were priceless. Ana Deboo’s copyediting made this story clearer and accurate. My dear friend Nancy Redwine offered astute literary advice, cheerleading and long beach walks. She’s my cherished teacher on the subject of illness and living life fully in the midst of it. My writing group – Lisa, Karen and Micah – volunteered at our very first meeting to tackle a draft of a couple hundred pages. They offered great advice. My nieces and nephew, Cara, Brianna and Sean, lent me their names for characters. For the record: I do have a sister Wendy, and when she was a child, she had curly blond hair, but she was never, ever, ever a brat. Well, hardly ever.
And of course, big hugs to Alex and Gwen, my personal windows into how kids and teenagers think, talk, laugh and love.
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ABOUT THE AUTHOR
Jill Wolfson is the author of the highly acclaimed novels What I Call Life and Home and Other Big Fat Lies. She lives with her family in Santa Cruz, California.
Jill says, “When I started to write Cold Hands, Warm Heart, I didn’t know anything about heart transplants or organ donation. I just knew that I wanted to write a story that delved into some of the toughest questions that we humans grapple with: How can we live fully while knowing that we will one day die? How do we go on with life without the people we love?
“I was talking to a friend who mentioned that her teenaged cousin was hospitalized with heart disease and unless the doctors found a suitable donor, she would die. And so – pun intended – I found the heart of this novel. How better to explore the enormous questions of life and death and loss and bad hospital food? But how to begin?
“Fortunately, a social worker at a nearby children’s hospital opened the door for me. I interviewed doctors, nurses, teenagers waiting for new hearts and livers, and parents who made the hardest decision possible – to donate the organs of a child who died suddenly and tragically. During these interviews, there were often tears, but amaz
ingly, we also laughed, smiled, joked – the full range of human experience. That’s what I hope I reflect in the story of Amanda, Dani, Tyler and Mylo.
“Writing this book made me think more deeply about our connections to other people. When you read it, I hope it does the same for you!”
Visit Jill online at:
www.jillwolfson.com
This is a work of fiction. Names, characters, places and incidents are either the product of the author’s imagination or, if real, are used fictitiously. All statements, activities, stunts, descriptions, information and material of any other kind contained herein are included for entertainment purposes only and should not be relied on for accuracy or replicated, as they may result in injury.
First published in Great Britain 2011 by Walker Books Ltd
87 Vauxhall Walk, London SE11 5HJ
Text © 2009 Jill Wolfson
Published by arrangement with Henry Holt and Company LLC
The right of Jill Wolfson to be identified as author of this work has been asserted by her in accordance with the Copyright, Designs and Patents Act 1988
All rights reserved. No part of this book may be reproduced, transmitted or stored in an information retrieval system in any form or by any means, graphic, electronic or mechanical, including photocopying, taping and recording, without prior written permission from the publisher.
British Library Cataloguing in Publication Data:
a catalogue record for this book is
available from the British Library
ISBN 978-1-4063-3548-4 (ePub)
www.walker.co.uk