Salt in My Soul Read online

  I’m deathly afraid of death.

  I’m going on a permanent diet starting today. I’m going to eat less…and absolutely no sugar.

  I probably won’t be able to follow the zero sugar thing but I’m going to try really, really hard. And the only protein I’m going to eat is fish. I just want to be skinny and feel good internally and good about my body and right now I’m none of those things. I used to be considered thin and now I’m not, and that really bothers me. Because it’s extremely hard to go from being thin to being “buff.” Also, the doctors always say that I’ll probably get diabetes, but if I eat no sugar then maybe not, because I already eat less sugar and I’ve lowered my blood sugar number from 159 to 85. I pretty much reversed inevitable diabetes! I’m ecstatic about it since I don’t need any more conditions to worry about in addition to what I already have.

  I read a lot. I read because the vast wholeness of existence (the immeasurable, multifaceted beauty of what it means to be human) cannot be perceived through one life.

  I read because there are a lot of things I can’t do. I’ll never be like the characters of On the Road, picking up and hitchhiking across the country on a whim, living off cheap liquor store commodities and sleeping wherever there’s no law against lying down. But through the eyes of the character Sal I got to see the beauty of spontaneity and the sheer emptiness of wandering forever and never setting down roots.

  I read because I want to see things in my head that aren’t actually there; I want to know about emotions that I’ve never felt before so that maybe if I do feel them they’ll be recognizable. I want to relate to characters that may be a million miles away but still share so much with me because we’re united by the human condition.

  I read because we race through the millions of events in our lives, taking note only of the “milestones,” but each of these events, even insignificant ones like biking by a tree as a leaf falls, can take on a distinct meaning when a writer observes its poignancy. A writer gets to choose which of these events are important, which to put in his writing, and which are mundane; but to do so, he has to think about all of these seemingly meaningless settings and backgrounds and occurrences on a deeper level than we ever do in our lives.

  I like to write, but outside of school I’ve never had any reason to. There is so much out in the world to see and think about. I used to keep all my thoughts in my head, but eventually there was simply too much to keep it all straight, which is why I started this journal.

  I’ve always wanted to be able to look back at some tangible body of writing and see the evolution of my outlook, how my beliefs and feelings and thoughts have changed over time in response to my life experiences. The records we leave behind of our lives as we grow older and pass away have always fascinated me; some people make scrapbooks, some people write novels, and some people document their lives through their actions. I have an interest not only in legacy, but also memory…in how, as time goes on, what was once vivid, real, present, becomes slippery and vague and trickles away like water cupped in your hands. I want to be able to look back and see not my actions, not my accomplishments, not my appearance, but the changes in my worldview and perspective.

  My guess is the writing I do will grow to become a collection of ramblings and opinions about the food industry, nutrition, and agriculture; religion, philosophy, and animal rights; nature photography and environmentalism; recipes, good songs, quotes; and perhaps a bit of a cystic fibrosis lifestyle guide. Sometimes I just write about my day. No agenda, just thoughts from a girl who loves wildlife, the outdoors, swimming, hiking, surfing, volleyball, photography, literature, writing, new friends, old friends, sunrises and sunsets, friendly strangers, traveling, great music (country, folk, rock, reggae, and world music), barbecues, strong coffee, food, the Hawaiian Islands, happy memories, and every single day I get to live healthy.

  I’ve grown up in a household that’s all about food. My mom markets daily, sometimes hitting the produce market in the morning for fresh fruit and vegetables and then a different market just because it has this coffee she is obsessed with, and then a supermarket for the staples. I eat a hot breakfast every morning, have a healthy lunch packed for me, and come home each night to dinner on the table. When my friends and I are looking for a place to hang out before or after water polo or volleyball practice, we come to my house, knowing something fresh will be coming out of the oven.

  But my mom isn’t the only one in the household whose cooking is impressive. My dad makes a mean Chicken Marbella, meticulously marinating and chopping and spicing to ensure maximum flavor. While my mom uses whatever is in the house—which could be any random hodgepodge of ingredients—to miraculously create a meal from it fast, my dad is more of the gourmet, take-your-time kind of chef. My mom cooks every day, my dad cooks a few times a year.

  They have between fourteen and twenty-two over for dinner every Sunday night, a tradition they started to feed my coach. It’s always fun.

  5/6/08

  Letter to my teacher:

  You asked me to tell you why I haven’t been in class. I was growing four types of infection in my lungs and the options were to be hospitalized for another round of IV antibiotics or to do extra treatments at home. I decided on the latter, which means adding one in the middle of the day (during your class). That’s also why I wasn’t in STAR testing.*1 You said you didn’t understand how I could choose to go to a swim meet instead of your class. My doctors drilled in me that health comes first, athletics second, school third. That might contradict your thinking, but swimming is extremely important in keeping me healthy and skipping it for a quiz is not an option. I hope you understand why what you said offended me because I care about doing well in your class, and missing school is not my choice but a necessary evil. I understand that you were annoyed about so many students wanting to make up tests on their own time, and I’m sorry to have to ask. I will see you tomorrow for the quiz.

  5/19/08

  I’m going to help my mom raise money for the Cystic Fibrosis Foundation!! Maybe my friends will, too….

  10/9/08

  Frustrated about volleyball. As a team, we’re letting negative expectations and thoughts affect the way we play. Mentally, we’re not strong enough to disregard our doubts, fears, or frustrations. For a while now, we’ve been losing very close matches, and it’s not due to lack of skills. It’s because we get scared that we will lose, and this fear causes us to lose. It’s hard to cast away fear.

  What we need is to replace our desire to be perfect with a desire to do everything to the best of our abilities. Ball control is important—but we get so wrapped up in the need to be perfect that we end up making more mistakes because we get frustrated. When we mess up, we should become more determined, but instead when we mess up, we get scared that we aren’t capable of doing better and begin to doubt our abilities.

  Individually, it’s hard to keep yourself focused and determined when you are pissed off or frustrated, which is why it’s the responsibility of the team as a whole to bring everyone’s attitudes up and make everyone more determined to work as a team to get each point. Negativity is contagious, and if we don’t get rid of it, our season will continue to be plagued by losses.

  We should only be satisfied with losing if we’ve given it our all.

  10/23/08

  What I wrote to the guy from Santa Monica High who was mean about Micah at their last water polo game:

  Micah is my brother and I can vouch that he takes no steroids or creatine or whatever you accuse him of doing. He is an amazing athlete with an incredible work ethic. He works so hard to help his team win. That’s right. You guys can wallow in your defeat and know that the Beverly Hills High School water polo team rocks. I’m good friends with many of the players and Coach Bowie is almost like my dad. You know that athletic ability comes AFTER good sportsmanship and mental toughness, right? If you ever want to be
at Beverly you better improve your bad attitudes and accept that we’re BETTER, FASTER, STRONGER, and we work harder. FYI, every single boy on the Beverly Hills water polo team is kinder, more athletic, funnier, and a better overall man than anyone on your team.

  10/28/08

  Today was a hard loss to deal with. Recently I haven’t been playing as well as I know I can. No one has been. We all want to win; we just don’t know how to accomplish it. I wish everyone knew how good we could be.

  Last year during school season, I never thought I would play back row in my career; I didn’t think it was one of my strengths, and so it never occurred to me I would come to care so much about it. In club volleyball I was exposed to a whole different mentality: defense and serve/receive make or break games. That was when I started to have a passion for back row, and once I got a taste of what it was like for a team to depend on me in back row (earlier this season), I knew that it would always have more meaning for me than hitting. I understand more now how much of volleyball is mental.

  11/10/08*2

  Thin green blades beneath my bare feet poke, caress and comfort,

  As unseen, unknown blades stab me from the inside out

  In the delicate labyrinth, the network of frail scarred tubes

  That is at once sustaining me and failing me.

  Red splatters across the green,

  The hated flag of sickness soiling nature,

  Tarnishing my one escape.

  I stand, walk, cough, sit, spew, swallow, stand again.

  Green stretches before me, the lawn steep, security far.

  I drop my books…cough.

  Drop my backpack, cover my mouth…

  Cough, spew, swallow, cough, spew, swallow.

  Standing again, a deep breath incomplete, cough, spew.

  The red is runny like water but sticky like glue.

  In between gagging, coughing, spewing:

  “Call…my…mom.”

  More coughs, the red still spews forth.

  My lungs are wet

  with the runny, sticky red.

  Ambulance men say, “You’re not sick;

  you look great.”

  Mom yells. Grandma yells. Doctor yells.

  I don’t get sirens. I’m “not sick.”

  I “look great.”

  But my lungs are wet

  With the red, runny and sticky.

  Cough.

  Emergency Room.

  White walls, white sheets, white doctors

  Make the red redder.

  “How much?”

  “No idea.”

  “How much?”

  “No idea.”

  “How much?”

  THIS FUCKING MUCH.

  8:00 a.m. Vitals. Breakfast

  Lots of eggs, whole milk.

  Isolation. Mask and gloves.

  Doctor A: “Three weeks here.”

  Doctor B: “Three days here.”

  Routine disagreements, I’m not to worry.

  “This is an art, not a science. We learn as we go.”

  “You’re not sick,” says Nurse.

  “She’s very sick,” says Mom.

  To pass the time, I sit.

  I stare at the walls.

  12:00 p.m. Vitals. Lunch

  Broccoli, beef stew.

  Isolation. Mask and gloves.

  Put it on when you come in;

  Throw it away when you leave.

  Doctors. Nurse. Respiratory therapist.

  Fellow. Physician. Cleaning.

  Put it on when you come in;

  Throw it away when you leave.

  To pass the time, I sit.

  I stare at the walls.

  Visitors, friends!

  I sit, baring teeth,

  Almost a smile but not quite.

  “How ya feelin’?”

  “Fine.”

  5:00 p.m. Vitals. Dinner

  Beans, whole milk, fries.

  Swollen arms, stiff knees, puffy eyes, dry skin.

  The parade of people comes and goes.

  Phone calls try to distract me.

  “How ya feelin’?”

  “Fine.”

  To pass the time, I sit.

  I stare at the walls.

  I lie in bed

  All day, all night

  But get no rest.

  Sunday morning:

  “You may leave,” says Doctor A.

  “Is she OK now?” says Mom.

  Some gibberish. I guess.

  Ripping tape,

  Removing tubes,

  Signing forms,

  Baring teeth.

  Time to leave please, to pursue freedom.

  Mom let’s leave please.

  “My, you’re tall,” says Nurse.

  “Yes.”

  She hadn’t seen me stand.

  I say good-bye,

  To those who will stay.

  Outside:

  Air, sunshine and salt,

  Nature, my escape.

  A deep breath…

  Freedom!

  Love this.

  Drowning in the flood of relief,

  Strangled by my fleeting fortune.

  Gone from that place,

  Free at last!

  Except not.

  Never free of these unseen blades, which stab me from the inside out

  In the delicate labyrinth, the network of frail scarred tubes

  That is at once sustaining me and failing me.

  2009

  9/5/09

  My earliest wants were immediate, visceral, primal: Food! Water! Mommy, I’m tired. Mommy, my head hurts. I want to play; can we go to the park?

  A blink later, the memories begin to materialize like figures approaching in the dark. Still far away, I can just begin to make out the shaded features of this person, Memory. I vaguely recall postponing bedtime for string cheese, telling Dad everything hurts (“Even your toenails?” “Yes, even my toenails!”), fearing the creaks and sighs of the floorboards of our century-old house. When I dreamed of Biter the dinosaur, I woke up screaming; now, as a teenager with occasional paranoid tendencies, I realize that my child-self-distorted-hours spent watching Barney and The Land Before Time had morphed into the nightmares that plagued me throughout childhood. One night, we laid food out for Biter outside the door to my room: bread in a bowl, saturated with milk, covered in chocolate chips and sprinkles, and made “appetizing” with green food coloring fit for your average neighborhood T-Rex. That night, Biter showed up in my dreams yet again—but he asked to be friends. For years after that, we gallivanted each night through tangled jungles and wooded nirvana. My dad and I continued to put food out—to befriend the monsters before they had a chance to come get me.

  At school, I had to go to the nurse’s office at recess and lunch to get the pills I take every time I eat. In fourth grade, Ms. Lightner would hand me a Scandishake, a 600-calorie milkshake for weight gain, in the middle of class. I dawdled on the drinking, despite knowing that she would check to make sure I sucked every last drop. I snuck M&M’s with no pills sometimes, aware of the stomachache I would get later, but itching to exercise some childish autonomy. My mom packed me a hot lunch for school every day: a thermos filled with mashed potatoes, brisket and gravy, or pasta Bolognese cooked with added butter. I just wanted the pita-Nutella sandwiches my friends had.

  My tactics to postpone bedtime transformed in middle school from faking hunger to “Just one more paragraph!” as I read another chapter. Books seemed to stack themselves up in my room, calling me to read them. I lost myself in
those worlds and will never forget the first time a book made me cry. At the end of Clan of the Cave Bear, when Ayla is banished from the Neanderthals and sets off alone to find her own kind, I bawled as if I were Ayla and I had been kicked out of my home. I pondered how beautiful the name Ayla is, and decided to name my future daughter Ayla. Then I remembered Elsa, the lioness from Born Free, and was temporarily conflicted about which name I would use for my own progeny.

  Sometimes, if I went to bed too late, my mom wouldn’t wake me up for school the next day. Her number-one concern was that I get enough sleep, classes be damned. I would finally awake on my own at 10:30 or 11:00, look at the clock, and start yelling about the math or spelling test I had missed. She always called the school; they were always fine with it. But I was not. I wanted to be there alongside everyone else, not in my bed sleeping the day away, receiving special treatment for a disease that hardly affected me at that point.

  By eighth grade, I was tall and gangly. The dreaded awkward phase was under way, with my daily uniform of athletic shorts, baggy T-shirts, and braces. I wanted my first crushes not to be six inches shorter than me. In the annual school pageants, I wanted to be in the front row with my petite best friends. Everything was organized by height, so anytime we were onstage, I was in the far right corner of the last row, seated next to the next tallest person in the grade, a boy who sweetly and jokingly called me “Too Tall.” I still played basketball at that age, so I preferred the nickname Too Tall to my other one: “Shaquille O’Neal.”

  My mom’s friends would say “She’s going to be a heartbreaker, that one.” I would smile and, in my head, think how ridiculous that was—I would never be breaking hearts.

  9/7/09

  Can’t believe it’s my senior year of high school. I’m not ready to move out and start my life. I don’t feel like an adult, I don’t wanna act like an adult. Adult life seems so structured and tame. Adults have so many responsibilities, they lose their sense of humor. It just seems like everything goes downhill from the time you’re twenty-five, and especially once you get married. Because once you’re married, you have no freedom, no independence, no privacy, no time for friends. Maybe I just think this because I don’t know anyone I would ever want to marry.