Salt in My Soul Read online

  Copyright © 2019 by Diane Shader Smith

  Postscript copyright © 2019 by Steffanie Strathdee

  All rights reserved.

  Published in the United States by Spiegel & Grau, an imprint of Random House, a division of Penguin Random House LLC, New York.

  SPIEGEL & GRAU and colophon is a registered trademark of Penguin Random House LLC.

  Contributions by Jack Goodwin, Mark Smith, Meryl Shader, Talia Stone, Diane Hale, Alison Epstein, Robert Bowie, and Paul Mohabir, M.D., are reprinted by permission of the individual authors. “Clear Lungs” by Jesse Karlan, copyright © 2017 by Jesse Karlan. Reprinted by permission of the author.

  LIBRARY OF CONGRESS CATALOGING-IN-PUBLICATION DATA

  Names: Smith, Mallory, author.

  Title: Salt in my soul : an unfinished life / by Mallory Smith.

  Description: New York : Spiegel & Grau, [2019]

  Identifiers: LCCN 2019004607 | ISBN 9781984855428 (hardback) | ISBN 9781984855435 (ebook)

  Subjects: LCSH: Smith, Mallory—Health. | Cystic fibrosis—Patients—United States—Biography. | Chronically ill—Family relationships—Biography. |

  BISAC: BIOGRAPHY & AUTOBIOGRAPHY / Personal Memoirs. | HEALTH & FITNESS / Diseases / Genetic. | FAMILY & RELATIONSHIPS / Death, Grief, Bereavement.

  Classification: LCC RC858.C95 S65 2019 | DDC 616.3/72-dc23

  LC record available at https://lccn.loc.gov/2019004607

  randomhousebooks.com

  spiegelandgrau.com

  Cover design by Lilli Colton

  Cover photograph: Diane Shader Smith

  Book design by Susan Turner, adapted for ebook

  v5.4_r1

  ep

  Contents

  Cover

  Title Page

  Copyright

  Author's Note

  Biographical Note

  Introduction

  Part One

  Part Two

  Part Three

  Part Four

  Part Five

  Part Six

  Postscript

  Acknowledgments

  About the Author

  I could title my memoir Ode to Salt since salt is part and parcel of the cystic fibrosis experience. Broken proteins lead to an imbalance of salt inside and out of the cells. If you kiss or lick the skin of a CF-er, you’ll get a firsthand taste, literally, of how fundamental salt is to the disease. CF patients lose so much salt in our sweat that we can get water intoxication from drinking normal water unless we add salt to our water and our food. And salty water helps counteract some of the worst symptoms of the disease. I’ve noticed the healing effects of salt water since I was a little girl, swimming in the ocean in Southern California and on the many, many family trips we took to Hawaii for my health. I feel as if there’s salt in my soul.

  —Mallory Smith

  Anyone who knew my daughter Mallory knew she kept a journal. She wrote during treatment, on vacation, when she should have been doing homework, in the hospital, in the middle of sleepless nights, at volleyball tournaments.

  Once, when Mallory was in high school, after we had a big fight, she stormed into her room and started pounding on her laptop. From then on, I assumed her journal was a repository for her anger. So when Mal gave me the password before she went into transplant (she was afraid she “might not make it to the other side”), I imagined reading a recap of everything I’d ever done wrong as a mother. It was a terrifying thought.

  I opened her journal the day of her memorial, thinking there might be something I could use when speaking about her. When I saw its scope—2,500 pages of her reflections over ten years—it became clear that Mallory had given me the most precious and unexpected gift a grieving mother could hope for.

  The absence of any expression of anger toward me left me incredulous and grateful. But always thinking of other people’s feelings was vintage Mallory. In the journal she left clear instructions for me not to let anyone else read the unedited version, so as not to hurt someone she might have railed against in a moment of anger, violate a friend’s confidence, or expose the intimate details of her love life to her father or brother. She asked me to share the parts that might help others struggling with cystic fibrosis, loss, chronic illness, body image issues, depression, anxiety, or transplant.

  Mallory’s diagnosis of CF imposed a maturity on her and forced her to ask hard questions from a young age. The answers would lead her to develop a set of remarkable character traits, traits that helped her come to terms with her sickness and helped turn her into a strong, determined, talented young woman who motivated others as she found her way.

  A three-sport varsity athlete in high school, Stanford University club volleyball player, and Phi Beta Kappa graduate, Mallory was passionate about the environment, channeling her interest into writing articles and producing radio programs. She wrote her first published book at the age of twenty-four, The Gottlieb Native Garden: A California Love Story.

  But more important to Mallory than her accomplishments were her relationships. Her uncanny gift for cultivating friendships was especially remarkable in light of the torment of endless daily medical treatments, frequent hospitalizations, and frustrations caused by systemic hospital inefficiencies. Mallory never got to lead a normal life, but early on chose as her mantra “Live Happy,” words she followed until her death.

  Even at the end, tethered to an oxygen tank and round-the-clock IVs, Mallory exuded happiness as she fought for her life. She faced the overwhelming obstacles of a chronic, progressive illness with courage and grace. Healthcare providers saw her as the perfect patient, the poster child for compliance. But this façade of perfection masked a darker truth…a truth she shared only in the writing she left behind.

  This is her story. These are her words.

  —Diane Shader Smith

  INTRODUCTION

  I have big dreams and big goals. But also big limitations, which means I’ll never reach the big goals unless I have the wisdom to recognize the chains that bind me. Only then will I be able to figure out a way to work within them instead of ignoring them or naively wishing they’ll cease to exist. I’m on a perennial quest to find balance. Writing helps me do that.

  To quote Neruda: Tengo que acordarme de todos, recoger las briznas, los hilos del acontecer harapiento (I have to remember everything, collect the wisps, the threads of untidy happenings). That line is ME. But my memory is slipping and that’s one of the scariest aspects about all this. How can I tell my story, how can I create a narrative around my life, if I can’t even remember the details?

  But I do want to tell my story, and so I write.

  I write because I want my parents to understand me. I write to leave something behind for them, for my brother Micah, for my boyfriend Jack, and for my extended family and friends, so I won’t just end up as ashes scattered in the ocean and nothing else.

  Curiously, the things I write in my journal are almost all bad: the letdowns, the uncertainties, the anxieties, the loneliness. The good stuff I keep in my head and heart, but that proves an unreliable way of holding on because time eventually steals all memories—and if it doesn’t completely steal them, it distorts them, sometimes beyond recognition, or the emotional quality accompanying the moment just dissipates.

  Many of the feelings I write about are too difficult to share while I’m alive, so I am keeping everything in my journal password-protected until the end. When I die I want my mom to edit these pages to ensure they are acceptable for publication—culling through years of writing, pulling toge
ther what will resonate, cutting references that might be hurtful. My hope is that my writing will offer insight for people living with, or loving someone with, chronic illness.

  * * *

  —

  Cystic fibrosis is a chronic genetic illness that affects many parts of the body. It operates like this: A defective protein caused by the cystic fibrosis mutation interrupts the flow of salt in and out of cells, causing the mucus that’s naturally present in healthy people to become dehydrated, thick, and viscous. This sticky mucus builds up in the lungs, pancreas, and other organs, causing problems with the respiratory, digestive, reproductive, endocrine, and other systems. In the lungs, the mucus creates a warm and welcoming environment for deadly bacteria like Pseudomonas aeruginosa and Burkholderia cepacia. The vicious cycle of infection, inflammation, and scarring that comes from the combination of viscous mucus and ineradicable bacteria leads to respiratory failure, the most common cause of death in cystic fibrosis patients.

  It’s progressive, with no cure, which means it gets worse over time. The rate of progression varies from patient to patient, and is often out of our control.

  * * *

  —

  Cystic fibrosis is a disease that does a lot of taking—of dreams, of time, of travel, of friendships, of freedom, of potential, of plans, of lives.

  Sitting in a hospital bed, I’m tempted to think about all the things that have been taken from me. More than that, it’s easy to think about all the things I want for my future that might no longer be possible, the will-be-takens.

  I was diagnosed at the age of three. As a kid, I made plans; I loved getting in bed at night because I had the opportunity to fantasize uninterrupted about whatever I was excited about. Some of what I thought about had to do with the future: where I would choose to live later in life, places I wanted to travel to, what I might be like as a teenager and then as an adult. Mostly, I envisioned other parts of the world—back then, anywhere was better than Los Angeles. The foreign always transcended the familiar. The unknown was brimming with possibility, while the known was full in a less satisfying way; like a big glass of a clumpy protein shake, you know it’s good for you but it doesn’t rock your world: daily routines, school days spent reading textbooks, long medical treatments I didn’t want to do. As Dr. Seuss says, “You’re off to great places! Today is your day! Your mountain is waiting, so…get on your way!” I believed wholeheartedly in those great places to come.

  But for a CF patient, time is the meanest of forces. Just as water steadily erodes rock over the years, causing durable material to crumble with the invisible quality of slow change, my disease erodes the life blueprint I drew as a kid; with time, invisibly but surely, I grow decreasingly confident in the plans that I had etched in this mental map until it’s hard to remember they were ever there. Occasionally, I’ll remember with a smile the whimsical desires I had as a kid, and how tenaciously I fought for them—the dolphin research trip I desperately wanted to go on (never mind that we’d be living without electricity and I wouldn’t be able to do treatment), my water polo team’s trip to Hungary that I wished to go on without a parent. Now I chuckle because these fantasies were born out of a sense of entitlement, and I’m thankful to have outgrown that. How many kids, diseased or not, get to go on a research trip to Belize during high school? I couldn’t go because I need electricity; most kids wouldn’t have been able to go because it’s indulgent and expensive.

  The things I wanted were never material things, though. For the most part, I wished for a life lived honestly, to do good things, and to be happy. I wanted a career that, selflessly, would help people and, selfishly, would let me work in beautiful places and outdoors. I wanted beauty—not for me, but for my surroundings. Spending so much time trapped indoors has given me a deep appreciation for natural beauty.

  A lot of the things I wished for have become reality. I’m incredibly grateful for the health I still have, the people who surround and support me, the time I got to spend at Stanford learning and growing into the person I am today, and the nourishing well of memories I’m able to draw from in times when the new memories I’m forming skew more negative than positive.

  But I’ve also spent a lot more time than I would like wrestling demons, wasting precious energy suffering with problems derived from feeling like a victim. My life is constantly changing, and that’s difficult. That’s what CF does; like an earthquake, it constantly moves the ground under our feet, so we’re always struggling to regain balance, to find our footing. It’s hard to look forward when we must always be looking at the ground beneath us; we’re more lurching than walking, stumbling to stay upright.

  With constant adaptation, though, comes a remarkable resilience. When my original goals become unrealistic, I compromise. When those new goals become unrealistic, I compromise again. When my replacement-replacement goals become unrealistic, I get frustrated. And sad. But knowing that the range of what I’m capable of will shrink, I need to plan a life where my goals do not have to be slashed every year as my health declines. I can be creative with what I’m capable of as the limitations pile on. It’s about perception—if careers are a means to an end (in my case, helping people and feeling challenged while making money to support myself), there have to be ways to get there that don’t require a strict schedule, hard physical conditions, or sixty-hour workweeks.

  Being frustrated and angry that something was taken from you hurts creativity, the very same creativity that could help you reinvent your possibilities and achieve your ends. Understanding this trap is important—knowledge is power.

  So yes, CF does do a lot of taking. It’s a complex, unpredictable, irreversible, progressive, painful, suffocating, choking weed of a disease and it’s okay to hate it.

  At the same time, it does give. It’s given me the creativity to reimagine my life, a skill I wouldn’t have needed to develop if everything had been easy and nothing was impossible.

  It’s given me a community of men and women who astound me every day with the strength and endurance they use to ride through daily challenges and life-or-death struggles. We all know this disease delivers both in big doses.

  It’s given me a way to cut to the chase in my friendships and relationships. Can you hang? Is that same person who’s there when I’m laughing and partying going to be there when I’m sick or sedated? It’s given me a resounding understanding of the value of a good friend, and my incredible luck in having so many.

  It’s given me the chance to look normal; not all diseases are so forgiving. It’s a blessing and a curse not to look sick—a curse when I need accommodations but aren’t given them because of the perception that I’m too healthy—but mostly, it’s a blessing. I am not branded by illness on a daily basis. If I choose to disclose, it’s just that: a choice.

  It’s given me a second home in the hospitals where I’ve had some of the best and worst moments of my life. I graduated college, officially (finished my last final), in the hospital. I’ve spent birthdays and holidays in the hospital. I’ve had panic attacks in the hospital. I’ve struggled to breathe in the hospital. I’ve forged powerful relationships with doctors, nurses, and ancillary support teams in the hospital. I’ve been grateful for the care I’ve gotten in the hospital. I’ve seen the strength of my family tested in the hospital. I’ve seen my own strength tested in the hospital.

  It’s given me the mountain that’s been waiting for me all my life. The mountain we’re all climbing, every day. It looks different for everyone, but we all have our own struggles, every person I see on the street. I have to remind myself not to envy those whose lives look normal, because their mountains do exist, even if they’re less obvious than mine.

  It’s given me empathy, and gratitude, and courage, and humor, and heartache, and happiness.

  All that giving balances all that taking and, in the end, I’m still here, in my second home in the hospital, having some of my
best and worst moments, feeling at times like I’m going nowhere but knowing that, in reality, like Dr. Seuss told me I would, I’m getting on my way.

  PART ONE

  Mallory was always the tallest, smartest, most athletic girl in the grade—even at five years old. We’d chase boys around the playground and she’d run faster than all of them. They all had crushes on her. Mal was every teacher’s favorite student, and every kid wanted to be her friend. She was the friend whose advice everyone wanted: she coached you when to text or not text the boy you liked, how to say the right things to convince your parents to let you go to that party, and gave you the best hug when you needed it most. Mal was the girl who missed forty days of the school semester and still got the highest grade in the class. She was the girl who laughed so hard she snorted, which made her laugh even harder. She was the prom queen—and would hate that I wrote that.

  —TALIA STONE

  2008

  5/1/08—(Age 15)

  About me: I could go every day to the beach and never get sick of it. I am obsessed with salt water going up my nose and seeing fish swim around my feet. I live for the grimy feeling of sand in my scalp. When I cry, the only thing I want to do is jump in the ocean.

  I like change. It’s exciting. Most people are afraid of it, but I embrace it. I hate when people say to each other, “You’re changing,” as if it’s a bad thing. I think that at such a young age it’s impossible to know entirely who you are and who you want to be.

  I miss a lot of school.

  I like lists. Actually, I like crossing things off lists. It makes me feel accomplished.

  I love my family. My immediate family (Mom, Pidge = Dad, Bridge = Micah, Maria = our housekeeper who I love like family, and my animals) is really amazing. We have a good dynamic; all of us are so different. I think I’m the most normal one.