Salt in My Soul

by Mallory Smith

  7/15/14

  So happy to be spending the summer in Hawaii. Becca and Ari didn’t come when I did so in the beginning my mom stayed with me and then Jesse, Gaby, Ali, and Stacy visited!

  Fourth of July here was crazy. They have this annual event called Floatilla!!!! A tangle of hippies, drunks, military folks, surfers, tourists—hanging out in the water on a formation of floats! Loud music coming through speakers, phones submerged in plastic cases, alcohol being passed around freely like it was water. Fireball bottles floating in the water. Recycling bins on paddleboards, good Samaritans collecting beer bottles. Pacific Drunk-People-on-Rafts Patch is the new Pacific Garbage Patch. You have to Jet Ski to get out there; it can barely be seen from shore. I went with Gaby and Stacy but we got separated in the crowd. So much fun but ended up with fever so had to cut it short. A kindhearted man paddled me back. In a crazy turn of events, Stacy ended up dating him.

  10/10/14

  What an incredible summer in Hawaii. After the Fourth, it was so busy, so fun, I didn’t need to write. But thinking back I marvel at the prowess of my body and how incredible those three months were. Documenting to remember:

  6:00 a.m. surf sessions in glassy conditions. Paddling for hours, never getting cold, never getting tired. Pop-up after pop-up, wave after wave. Infatuation with Shawn, my friend…my surf guru…my what-even-are-you?

  Confusion, mixed signals, so much laughter.

  One day, coughing up blood before a surf date, I considered canceling and decided against it, too excited to see him, too worried that if I canceled, I’d never surf with him again. As unpredictable as he was at the beginning of the summer, just out of my grasp, is how consistent he later became, dependable, loving, and ever-there.

  Papayas and frozen waffles, açai bowls and coffee. Sustenance that fueled my surf habit. The daily drive along that road from Kahala to Waikiki, from the suburbs to the surf in our sturdy Toyota 4Runner rental. Boards hanging out the hatchback, “Take Me to Church,” by Hozier, blaring from the speakers.

  Sandy feet on my yoga mat, the sweet teacher we’d see after class at Whole Foods. Our bodies would sweat salt onto the salt already on our skin from the surf beforehand.

  Surfing with DJ one day in front of the Kaimana cottage. Disorganized surf spot with shifty surf, lots of reef. Trying to escape the crowds, we paddled way out to a break where only very advanced surfers were lining up. We planned to stay on the inside and catch the smaller ones, staying out of the way of the others. My arms got tired on my seven-foot, six-inch Sippy Noserider so I switched boards with him, taking his eleven-foot log, heavy as lead.

  A six-footer rolled through and I noticed too late to paddle over it; the wave tossed me off the board and the massive fin sliced half the circumference of my thigh just above the knee, then down the back of the leg to the mid-calf. Didn’t break skin, thank God, but caused a hematoma the size of a softball. The pain it caused left me immobile for weeks.

  Tandem surfing competition with Shawn in Duke’s Oceanfest. Learning how to do lifts with Bear, the World Tandem Surfing Champion. Shawn’s magnetic smile, his mind-boggling ability to surf while holding me in the air.

  Pali Highway, surrounded by towering heights of green, like the set of Jurassic Park. That time it rained down on us when we were in an open Jeep, when it went from sunny skies to pouring buckets in an instant.

  Windy days on those beautiful east side beaches, Kailua, Lanikai. The Whole Foods in Kailua where they jacked up the price of water when Hurricanes Julio and Iselle were coming. The hurricanes were supposed to devastate the island; we prepared to be indoors for days, bought hundreds of dollars of water. Safeway stores all over the island were out of water. We hunkered down; the Big Island was ravaged.

  My roommates, my partners in crime, my incredible friends. Becca and Ari, BFFs for life. Other friendships forged. And Shawn. Always Shawn. One day I found out my unrequited feelings turned out not to be unrequited. Double-date night on Taco Tuesday, alcohol and greasy tortilla chips and then, sadly, fevers.

  Mom flying in to help me move home. The very last night, massive hemoptysis and hospitalization the next day. Shawn showing up with fresh-picked avocados from the mountain, sunflowers, and dominoes. Yoga and sneaking out to secret patios. Dr. Mohabir saying I couldn’t fly home. Ten days in the hospital followed by a ten-day hotel stay since our lease was up.

  Those three weeks of sickness when everything changed, with us, and with my health.

  That summer of 2014 was freedom. It was fantasy. My life was a movie that I didn’t want to end. No perception of my body being limited in any way until my very last night on the island. Every day, I did what I wanted and my body obliged. It supported my purest passions and athletic endeavors.

  That summer we did the ledge. I stood on the highest tower, seeing the most beautiful world in every direction. And then hemoptysis. I plunged, free-fall. The fabric of my perfect life unraveled.

  Now I see no rock-holds or crevices to help me climb. There is no climbing back up. When you’re falling, there’s only one direction you can go.

  10/15/14

  I made a big decision yesterday—I talked with my professor Andrew Todhunter for about an hour. Told him about my options for work post Stanford and how I was feeling lost and confused about what I should do. He advised me to avoid a real job (important to hear from an adult who’s not one of my parents). I know they want me to avoid a real job for health reasons, and Andrew has the perspective of a healthy person who avoided a real job for different reasons.

  Andrew encouraged me to become a writer and to take on a book project (to write about Susan Gottlieb, an important environmentalist, and her renowned native garden). Reasons:

  I care deeply about the environment

  Will make money

  Great on my résumé

  Give me confidence to do a book-length project

  Experience will translate when I’m ready to write my own book.

  I talked to Andrew about what’s important to me, and how to go about being a writer. What the days are like, how to keep yourself on track/disciplined, how to network to get work. Lots of philosophical talk, but also lots of practical talk. He’s so helpful. Later met with James Campbell (another one of my professors), who is so inspiring.

  10/16/14

  When I was young, I learned about the selfish gene.

  Lying in bed at night, cuddled beneath the covers, my dad’s voice would soothe me to sleep with talk about the complexity of the human genome, the spiral shape of a DNA helix, the way forces of natural selection would make harmful mutations die out with their host, but allow random beneficial mutations to proliferate and spread through a population, causing such changes within a species that one common ancestor could play grandfather to a bonobo, a rhesus monkey, and a human, or a Brussels sprout, mustard seed, and stalk of broccoli.

  Every night, as he’d wax poetic about the marvels of evolutionary biology, only taking a break to throw in some astrophysics and history, I’d fall asleep to the letters A, T, C, and G, amazed at this world we live in, developing this profound love for the theory of evolution, for the belief that random chance and probability could shape a planet composed of rock, water, and protozoa into the beautifully varied community of life that exists today, from the highest peaks of the Himalayas to the lush richness of the Amazon to the eerie black depths of the dark ocean floor.

  We worshipped Dawkins and Dennett, the unusual versions of childhood heroes my brother and I clung to, and they illuminated if not the why, then at least the how of human existence. Evolution seemed like a religion, but it wasn’t one because it does not require faith, it encourages you to question, to dig, literally, to understand the origin of our species and the complex history of the genetic matter that existed, mutated, and evolved to construct this current world of ours. This community of species
we share the planet with, a community that has lost members like the dodo, the Kauai o’o bird, the Caribbean monk seal, the Baiji white dolphin.

  We read God’s Debris and The God Delusion, debunked the logical proof of God’s existence put forth by Aquinas, read the Bible as literature, and occasionally laughed at the more outlandish elements of certain stories—Lot’s wife turning to a pillar of salt for looking over her shoulder, Joseph’s brothers’ inability to recognize him when he became pharaoh of Egypt, Noah’s Ark and the idea that two of every species alive today could fit into one boat without all eating each other, the blood in the river and the frogs and the leeches; but we learned some lessons anyway, in Sunday school and in discussions at the dinner table, what my parents called the “point” of their atheist version of Judaism.

  But one day, I realized that evolution, the almighty natural force that I revered with the core of my being…evolution isn’t acting on me.

  I’m exempt.

  If natural selection were happening unhindered, I would be dead. There would be no Mallory Smith, age twenty-two, Stanford graduate living and breathing, making friends and reflecting on the origins of the universe. There would just be some ashes scattered in the Pacific Ocean, or however my family would choose to honor a life that had no chance to ripen.

  I was born with two defective copies of the CFTR gene,*12 one mutated copy from each parent. You have one copy of the gene, and you get a heterozygote advantage, an increased fitness because of a lower likelihood of dying of cholera. But with two copies of the gene, you’re salty. The old adage goes, “The child will soon die whose brow tastes salty when kissed.”

  At this point, keeping myself alive is a full-fledged mission, enlisting all of my energy and hours of my day, every day, as I need nine to ten hours of sleep, sixteen pills with a hearty breakfast, packing extra calories to overcome malnutrition caused by pancreatic insufficiency. Vitamins and minerals, probiotics and antibiotics, gastrointestinal medications, sinus rinses with saline, steroids and antibiotics, lengthy CPT treatments. All to reduce inflammation and fight the chronic deadly infection eating away at my fragile, scarred lungs.

  And that’s just the morning.

  Throughout the day, more pills four times a day. Some three times a day, some every time I eat, some thirty minutes before eating. Another round of CPT/vest midday, more breathing treatments. Then the entire morning routine again at night.

  About four hours a day I dedicate to the simple act of taking a breath, fighting the billions of bacteria overtaking my lungs and clearing out the mucus so I don’t feel like I’m breathing through a straw with a boulder weighing on my chest. Staying alive, for someone with CF, requires active and constant effort against natural selection, requires a grand fuck you to that force which, left to its own devices, would have us suffocated from respiratory failure before adolescence.

  What does my survival come down to, what is responsible for my ability to trump natural selection? Medicine. Medicine gives me the gift of life. Medicine exempts me from the forces that paved the way for humanity to emerge, that shaped life on Earth for millions of years, since the very first cell sprung to life in the primordial soup.

  How is that fair? Why do we, today, get to override evolution? What will that do for the future of our species? More important, what does that mean for the millions of other species on this planet who don’t have that unfair advantage, who still exist at evolution’s mercy?

  I want to live and I want people the world over affected with illness, ridden with deadly diseases, to live, to survive, to thrive, and to reproduce, creating imperfect little perfects. I want us to be viewed as worthy enough to pass on our genes, even if we’d be outcompeted by those whose genome is “better” in a world where natural selection still reigned supreme.

  My life is a miracle. Life in general is a miracle. Our existence is the result of stars exploding, solar systems forming, our Earth having an environment hospitable to life, and then, finally, millions of highly improbable events accumulating over millions of years to bring us, a capable and conscious bag of stardust, to the here and now.

  *1 Human Biology at Stanford

  *2 A thick-walled gas-filled space within the lung

  *3 a computerized tomography scan that provides more information than an X-ray

  *4 allergic bronchopulmonary aspergillosis

  *5 antibodies produced by the immune system

  *6 Colleen Dunn and Zoe Davies were the research manager and research coordinator, respectively, of the clinical trial. Mallory adored them.

  *7 the family dog

  *8 one of two main hubs where students hang out

  *9 I wrote Mallory’s 65 Roses, a children’s picture book illustrated by Disney animator Jay Jackson, to explain what the disease was and all that it entailed. We read it to her class at the start of each school year, gave a copy to each of her friends, and had it distributed nationwide since there was then no educational material about CF for young children. Mallory became somewhat of a celebrity, her friends and their families accepted the diagnosis, and life was okay.

  *10 an effective antibiotic that is taken through a nebulizer

  *11 the manager of the Stanford Storytelling Project

  *12 cystic fibrosis transmembrane conductance regulator gene

  PART THREE

  Mallory had the craziest nicknames for people. For example, Talia was Takau, Gaby was Gikatu, Maya was Mizzle or Missoula Humes, Mark and Micah were Pidge and Bridge. We’d always crack up about what she’d come up with. As for my nickname, Mal called me Alsballs so I called her Mallzballs, which over time became just Balls. I was the left ball, she was the right ball. Despite Mal’s genius, she was playful and silly and sometimes downright goofy. There are so many funny and irreverent stories to tell about my best friend.

  —ALISON EPSTEIN

  2015

  2/1/15

  The last time I wrote was a few days after my birthday. That shouldn’t bug me. I was happy, I was busy, I didn’t write, who cares? I actually do care. Because there were a lot of times I felt like I needed to write to clarify things in my life, and I didn’t, because I hadn’t written recently and I wasn’t in a mood at that particular moment to catch my own journal up on my own life. Deep regrets.

  2/10/15

  Life is good.

  Spent a week up at Stanford for medical appointments, seeing college friends plus Talia and Jason in the city. Spent time on campus, working and walking around, soaking in the beauty, and it was really nice. Felt good enough to go to yoga and play beach volleyball twice!

  Then came home to L.A., spent one day here recovering and sleeping, then dove into Susan’s book. Flew to Vegas with Natasha’s friends. Stayed in a villa at the Mirage—a villa that normally costs $11,000 a night but Sasha’s dad got as a favor because he did eye surgery on someone important. It looked like Versailles.

  The day was so much fun. By the time we walked to the club I was tipsy. We had a private table and were being waited on like kings. We danced, then I sat down because I started to cough. Natasha went with me to the bathroom so I could cough up mucus (alcohol thins mucus and so does laughing). The attendant thought my violent coughing was barfing. And my nose was oozing blood (an ongoing problem of late, plus it’s dry in the desert and alcohol is a blood thinner). I walked to the mirror so I could wipe my nose.

  Apparently at the same time there was a ton of coke on the sink and the attendants assumed it was me because I was wiping off my nose and because they thought I’d just been puking in the stall, so they whisked me to security. They brought me to this big man named Stefan, who accused me of doing coke. I started yelling that I was coughing because of my life-threatening lung disease, that I could die when I’m twenty-five, that I always wear a medical ID bracelet but had taken it off for the party, that doing coke would kill me and I would never EV
ER do it.

  Natasha was there trying to speak to them rationally and soberly, but the guy told her, “You’re not helping…if you want to help go get her ID because she’s going to the police station.” She left to get my ID, found Matt and brought him to Stefan, but Stefan ignored him. By this time I was hysterical, crying, telling them that I was protected by the Americans with Disabilities Act and that this was discrimination.

  Natasha had the thought to pull out my pills from her bag, which were in a biohazard bag and were clearly prescription pills that looked serious. She said we were guests of Victor and that he would not be happy if he heard about this, and that my dad is a lawyer and HE would not be happy and would try to sue if they took me to the police with no evidence when I was just coughing because of a life-threatening genetic disability.

  Finally, he apologized, and then he started sucking up to me and it was insane to see how he changed his act. He was groveling, asking me what I did, said, “You should be a model,” and then asked if he could do anything for me. I said no and then started bawling even more. Natasha and Matt helped me calm down. I felt so judged and misunderstood and it just made me realize how what people see on the outside when they look at me is so incredibly different from the reality of who I am.

  And I also realized that I should always be wearing a medical ID bracelet, and have a medical card in my wallet to prove to people how serious it is. Always. Because I was so close to ending up at the police and without a sober friend there like Natasha, they would’ve hauled me to the station. And then I would’ve had to call my parents from Vegas to explain the situation and that would have been horrific.

  The rest of the night was fun, got to bed late, slept like a log, grateful that Natasha was with me.

  At the airport they did a full pat-down on me because my machine beeped positive for some bad chemicals or something. Which was just so crazy, second time I felt like a delinquent this weekend. Natasha came to my house for dinner and we told my parents about Vegas.