Pieces of Me

by Amber Kizer

  “Is it?”

  “Then why did we go? If not to know her?”

  “The house she lived in is only one piece of her. Just like the heart is only one piece of you.”

  “You’re right. All the more reason to look ahead, right?”

  Leif nodded. “Sure.”

  “I’ll probably backslide.”

  “I’ll catch you.”

  “Thanks.” Vivian leaned over and kissed Leif gently.

  Thank you.

  CHAPTER FORTY

  Samuel logged on to The-Daily-Miracle first. With a quick cut-and-paste, he uploaded his latest blog post.

  Dear Miracle Watchers,

  I started this blog as a way to reach out to all the people seeking hope. No, that’s a lie. I started this blog because I needed to see hope at work. I needed it. You see, I’ve spent years of my life on dialysis, waiting for my own miracle of an organ transplant. My faith that all things happen for a reason was tested repeatedly. The blog made me feel as if I had a reason to be here.

  I am not going to quote statistics, but honestly, at the heart of the matter, I didn’t think I would ever get kidneys. Thanks to a family in another state and a girl named Jessica, I did.

  That was the miracle I expected. Prayed for. Needed. But the true miracle was meeting the other people who are now connected to me via Jessica. Yes, all things happen for a reason.

  And I fell in love.

  There I said it. Typed it too. I fell in love with a girl I’d never met; we seemed to connect better than anyone else on the entire planet. I know it sounds impossible, but I’ve already posted thousands of impossible things over the years. Don’t tell me that falling in love with someone you’ve never met seems the most impossible of all.

  You don’t have to believe me. The love was real, and I will always love her.

  But she isn’t here anymore, and I can’t be with her. I can’t explain, but I know that she and Jessica are together.

  My gift to her, to both of them, is to live for us all.

  I need to live.

  A new friend brought to my attention that I am no longer tethered to tubes and hospitals every day for hours. Scary as stepping into the unknown is, I also need to step away from the computer wires and screens. A wise man told me I’m not actually living if I don’t go out and get dirty.

  “You gotta get tackled and muddy. Computers aren’t life,” he said.

  I can’t say the tackling appeals, but perhaps that’s an inevitable part of playing this game of life. Sometimes we get tackled. And some of us can’t get up. And others require help but can bounce back. What can I say? The computer geek likes sports metaphors too.

  So I’m taking a break from the blog. I’ve opened the links to all of us. I ask that you please share miracles as you spot them. Make miracles of your own happen for others.

  I’ll be honest: I’m terrified. But I’ve learned we are all connected to each other. I have friends all around the world, and I’m counting on you. I guess that’s what I wanted to show all along.

  Enough. For now. I’ll upload virtual postcards if the mood strikes and check in from time to time. I’ll be back. But in the meantime, I might see you at the La Brea Tar Pits in Los Angeles or New York’s Dylan’s Candy Bar, the pyramids at Giza or Bangkok’s newest nightclub.

  I don’t know exactly where, but I’ll be living outside the box where all the dirty mess lives. Watch for me and say hello.

  ONE-YEAR ANNIVERSARY

  CHAPTER FORTY-ONE

  At what point I knew everything about their lives I don’t know. One moment I was me and the next I was more than, like flipping through cable channels on an out-of-this-world remote. There was more to my story than just me.

  Living takes something else. Something greater. Something more. The miracles that made my body work did not give me the sight, the heart, the ear for life. My life mattered, but not in the living, in the dying. My life made the continuation of these lives possible.

  “You’re sure this is the right place?”

  “Carlton printed directions.”

  I’d never been in this cemetery, never seen my own grave. Maybe I never wanted to.

  “We have to work fast. They shut the gates and patrol on Halloween night.”

  “You think they might wonder why we have shovels?” Samuel chuckled.

  Maybe.

  Vivian unwrapped the four-by-four canvas.

  Her work stole my breath.

  Me.

  Them.

  Beautiful.

  Leif and Samuel grinned and began to carefully peel the sod from my grave. “You’re sure we have to bury this for her?”

  “Can’t we just leave it by her headstone?”

  “You heard them say that they remove everything on the first of the month. I don’t want this ending up in the Dumpster or on a collector’s wall.”

  “Why can’t we keep it?” Leif asked.

  “I’m painting special ones for all of us,” Vivian answered. “Dig.”

  My face was there, smiling as if I knew a special secret. My hair was short like in the photo Mother showed them from dress shopping. But Vivian painted me full of tiny adventures. Up close I saw birthday cakes with candles, hubcaps, baby rattles, running shoes, flags of Great Britain and Kenya and Malaysia. Wedding rings and white doves. Forks and a T-bone steak. The Parthenon and the Grand Canyon’s walls. Every time I saw it, studied it, there was something else, something new.

  Like life.

  As if the painting evolved as their journeys unfolded. With new textures and perspectives. New colors and depths.

  The boys moved dirt onto the tarp, just a few inches, deep enough to cover the portrait from groundskeepers and prying eyes.

  Vivian laid it gently down and silently they filled the dirt on top, positioned the grass exactly the way it was.

  I’m attending my own funeral.

  Samuel popped sodas and they plunked down, leaning against gravestones. “How’s Maestro George doing?” he asked Leif.

  Leif’s weekly piano lessons from the Maestro had started out as a way to keep in touch with Misty’s brother but quickly morphed into a Leolin project. “He loves my parents. They’re talking Carnegie Hall and Juilliard. He pretty much lives with us now since his parents are divorcing. They checked out after Misty’s death, man.”

  “Is George cool with your parents being so on top of him?”

  “Yeah, he doesn’t mind the pressure, and they’re beginning to think my love of music isn’t so loserish. He lives for your postcards and letters—calls you the Answer Man and won’t tell me what you talk about.”

  “You got the recording of his recital?”

  “Yeah, amazing. How’s Carlton?”

  “He and George are BFFs, and he spends almost as much time with us as George does. But you know his mom; she’s all about tweeting photos of her with my parents. Poor kid.”

  Vivian twined her fingers with Leif’s. “Carlton actually likes to paint, so I’ve got him in the store a couple days a week after school.”

  “He still likes to listen to your heart?”

  “Yeah. Sometimes, when he’s really sad, he holds up the stethoscope we got him and takes a listen.”

  They slid into gentle silence and watched flocks of birds heading south for winter. “Where are you off to next?” Vivian asked Samuel.

  “There is a monastery in the mountains of Tibet that invited me to visit.”

  “And your mom?”

  “She’s taken up riding motorcycles and started a support group for parents of donors,” Sam replied.

  “How about you?”

  Vivian answered, “I get my GED results next week, and then I start a course of study at the Sorbonne.”

  “Your parents let go of high school graduation?”

  “We compromised.” They finally understood that expecting Vivian’s life to follow the normal journey didn’t mean it would. They couldn’t will it, just like they couldn’t w
ill a cure for her CF.

  I think I always expected my life to start when I was an adult. After high school. After prom. After. After. After. I didn’t think about trying to make every breath count, or whether or not my body might fail. My life did start after, but I was just along for the ride.

  “What about you?” Samuel asked Leif.

  “I’m training for a triathlon with Pirate. I missed working out and competition.”

  “You going to end up a pro player anyway?”

  “Never. It’s gotta stay fun or it’s not worth it. There’s more to my life than w’s and l’s.” Leif draped his arm over the cool stone with my name chiseled into it and I thought about the days since my death.

  I didn’t know if my parents would have donated my organs if my hair had not been cut. If things were different, I knew they’d have leapt at the chance to keep me alive and accept anyone’s organ if it was offered to save my life.

  The funny part, ironic maybe—I had no idea who ended up with my hair. The ponytail that started this whole chain was missing in action. Maybe because the hair cells were already dead, or because I was still living when it was cut off my head, I had no energetic connection. I didn’t know. Did a little girl somewhere wash and comb and wear my hair? Did she think of me the way Vivian did? Or Sam? Or Leif? Or did my hair even end up at the right place? Was it tossed in the trash like the garbage?

  How did one death change the path of a life? Of many lives?

  We’ll see, won’t we?

  Everyone wants their life to count. In every heartbeat and breath, in steps, and sights, in touches and songs written—this is how I count mine.

  “Next year we’ll skydive,” Samuel declared. Vivian nodded. “Something new every anniversary of the rest of our lives?”

  “I’m in,” Leif agreed.

  “We’ll keep in touch?

  “One of us, preferably all of us, needs to be here on the first of every ‘more’ year,” Samuel commanded.

  “On All Souls’? That’s fitting.”

  “I don’t like to think this is the only place she is.” Vivian wiped away a stray tear.

  Samuel’s voice strengthened. “No matter what, on this day we’ll report to Jessica on the mores in our lives. And Misty.”

  “The mores?” Leif asked.

  Vivian got it. “More breaths.”

  “More birthdays,” Sam added.

  Leif smiled. “More kisses.”

  “More giggles.”

  “More shits.” Samuel grinned.

  “More chili dogs.”

  “More pets.”

  “More sex.”

  “More sleeping in.”

  “More staying up all night.”

  “More coffee.”

  “More speeding.”

  “More leaping.”

  “More running.”

  “More lazy yellow afternoons.”

  “More everything!” Vivian waved her hands at the sky, shouting.

  Samuel leapt up and joined her, yelling, “And anything!”

  “And all of it!” Leif roared so loud all of heaven heard.

  There were mores because of me.

  And just as I knew everything about these people, I knew they would keep their promises. They’d live, and gather, and share with me, if only in the back of their minds, what a full life we’d have. Will I continue to journey with them? Or is there a “more” for me, waiting for me to be ready for it?

  I didn’t know exactly when it happened, but there it was … the sum of my pieces was my peace.

  Acknowledgments

  I owe a debt of gratitude to those who have shared their amazing stories, including Reg Green, author of The Nicholas Effect, and Chris Klug, coauthor of To the Edge and Back. During the revision process I stumbled across Laura Rothenberg’s memoir, Breathing for a Living, which documents her struggles with cystic fibrosis and ultimately her decision to undergo a double lung transplant. Afterward, I learned she died the same year her book was released. I owe her and her honest words: not only did her story help me better understand a teenage transplant patient’s reality and color Vivian’s life, but she also documents a girl who fought CF to have a life on her own terms. I hope Laura would approve of Vivian’s spirit.

  The Internet can be a wonderful place to find resources and stories, and I have to thank all the people who willingly and openly share their struggles with failing health, organ donations, survivors, and medical personnel via blogs, posts, and interviews. Thank you all for sharing with strangers your point of view.

  I couldn’t do what I do without the support of family and friends. Mary and Jeff Bakeman; Misty and Donnie Bittinger; Rosie, Tom, Elizabeth, and Aidan Donnelly; Sarah Diers; Patrick Boin; Sarri Gilman; Mark and Kate LaMar; Sarah and Tim LaMar; Lindsay Lanson; Barbara Lanzer; Tara Kelly; Pete Kizer; Rachel and Ken Rogers; Trudi and Bill Trueit; Barney and Beth Wick; Keith and Alyssa Wick; Kathy Wick; Mark Wick; Heidi Rendall; Erika and Scott Jones; Bruce Alexander; and Gail LaForest.

  Booksellers like Tracy Harrison, Josh Hauser, and Nancy Welles, who hand-sell their favorite stories to new readers, are priceless. Many thanks for all you do.

  Thank you to all the educators who hand-deliver stories to their students in a time when reading is being shoved aside for standardized tests. Our generations of thinkers and curiosity seekers are in your hands—please stay strong and fight for the love of learning.

  Thanks to my beta readers who willingly wander into the lion’s den of my head: Kate LaMar, Jennifer Sand, Tristan Wisont, Kim Mattingly, Meagan Parker, Danielle Mitchell, and Rachel Rogers.

  To Mom, who never knew she cared so much about hearing tales of organ donation and cystic fibrosis—thank you for understanding my process and believing in serendipity too. To Alex, who has survived his first book with me and finally worked up the courage to ask, “When do you know a book is done, exactly?” Honey, I do so love you.

  I always acknowledge our men and women in the military, naming some of the deployed while I am working on a book. It keeps me grounded and puts my process in perspective. I would not have my freedom of speech, my career, without you, and I am forever in your debt. The character of Pirate is an amalgamation of the warrior spirit I see in those who have returned home wounded. My heart extends to you, your families, and your caregivers—may you find comfort, peace, and healing as you go. Thank you.

  Letter from the Author

  Dear Reader,

  Obviously my bias is toward organ and tissue donation. Maybe it’s because of the health issues I’ve faced all my adult life, living with unrelenting pain, but I don’t consider “me” attached to the body I’m in. If you want to call that my soul, or my energy—whatever you call it, I know that what makes me Amber isn’t tied up in this broken body. When my body dies, I won’t be here. To be honest, with my medical history, I don’t know which, if any, of my pieces are useful—but I will leave that up to the experts to decide.

  When I began this story, I knew who Jessica was immediately, but shortly thereafter, I met Vivian. From the beginning, I knew Vivian was a force of nature, received Jessica’s heart and lungs, and dealt with the complicated and often overwhelming genetic disease cystic fibrosis.

  There is a lot of medical information in this story, and to the best of my ability I’ve kept it as accurate as possible. I have greatly accelerated the time it takes for a person to heal and recover from an organ transplant. That can take months, if not years. I sped up the process to keep the story moving, not to minimize or diminish the journey. I also know that treatments, medications, and science are ever-changing fields and each body is different. That said, I made choices for these fictional patients that might be contrary to what you personally know or understand. I ask your forgiveness for mistakes and oversights.

  As of 2012, the potential donations of one deceased person saved the lives of up to a dozen others and improved the quality of life for fifty more. That’s an amazing amount of good that can come from a
tragedy. Without organ donation the tragedy of one death is multiplied by at least two. There are many more people who need organs than those willing to donate them. And while great strides have been made on using living donors for organs like kidneys and livers, things like hearts, corneas, and tissue donations can only be used after death.

  Give thought to whether you want to be an organ donor. There are many valid reasons to decide not to. But if you feel strongly one way or another, you need to have a conversation with your family. Consider a family plan. It’s much easier to make decisions in a moment of crisis if everyone already knows their loved ones’ wishes. This is a difficult conversation to start but often can elevate a family bond.

  You can pledge to be an organ donor on your driver’s license, at donatelife.net, and on Facebook.

  For more information, visit:

  United Network for Organ Sharing—unos.org

  Children’s Organ Transplant Association—cota.org

  U.S. Government Information on Organ and Tissue Donation and Transplantation—organdonor.gov

  American Transplant Foundation—

  american​transplant​foundation.​org

  What you need to know about cystic fibrosis

  I knew in my gut Vivian had CF, but other than a vague idea that it was a disease that affects the lungs and the knowledge that those born with it die young, I had to start at the beginning. There is always an aspect of serendipity to my writing—maybe it hearkens back to how I started writing in the first place, but for whatever reason, serendipity is often what tells me I’m in the right place with the right story.

  Cystic fibrosis is genetic. While it may affect more than one sibling in a family, it is not contagious. You cannot catch CF. At the most basic level, the cells in the body of a CF patient don’t properly regulate water and salts. This thickens the mucus in the body, making it much harder, if not impossible, for the respiratory, gastrointestinal and digestive systems, and reproductive systems to function properly. CF is not a new disease—there are writings from the sixteenth century that talk about salty babies dying quickly. But in the last fifty years strides have been made in treatment and quality of life for those facing this disease.