Salt in My Soul

by Mallory Smith

  After twenty minutes, I got out of bed and took an Ativan for anxiety. I took a Vicodin for the chest pain, sipped more cough syrup, and did another half-hour breathing treatment. When none of these things provided relief, I knew I could no longer put off going to the emergency room. Physically tense but mentally drugged and fatigued, I called the pulmonary fellow, packed my things, and prepared for another admission. It was a rote going-through-the-motions scenario.

  When I was sitting in the waiting room of the ER, waiting to be triaged, the reality of the situation hit me with a staggering force: there I was, the night of my twenty-third birthday, sick, scared, and not even surprised.

  Did I ever picture that that is where I would be on my twenty-third birthday? Absolutely not. In life, we often pass the time operating on a scale of minutes and hours. We wait for the bell to ring, signaling the end of a boring lecture. We watch the hours pass at work, waiting for 5:00 p.m. We monitor the timer as we run on the treadmill or the elliptical.

  It’s rare for us, with our micro-focus on minutes and hours and days, to zoom out, to step back and ask the big questions: How did I get here? What did I envision for my life, and does my reality match that vision? Or perhaps better questions: How did I not realize, as I got older, that this is where I was destined to be? Why did I let myself envision anything else?

  Real change is often made by people who are too young, too inexperienced, or too naive to know that what they’re attempting would be considered impossible by others. These folks blindly pioneer and innovate, despite the limitations and restrictions perceived by others. They change the world, even if they fail to do what they set out to do, initially. They change the world by challenging us to look beyond the perceived limitations that we all have, by forcing us out of the boxes we let ourselves get caged in.

  In a way, I unwittingly did that for myself. I was sheltered as a child from the brutality of cystic fibrosis, from the likelihood of dying young, from the statistics and stories that say it all. But driven by my own curiosity, I eventually began to seek out stories of patients with Burkholderia cenocepacia, the bacteria that colonizes my lungs. They were horror stories—case reports of kids that were healthy one day and dead two weeks later from the rapid necrotizing pneumonia known as cepacia syndrome. I pored over those case reports, then compartmentalized the information, putting it away somewhere in my brain, where I didn’t let it affect my decisions or actions.

  I managed to remain naive about my future. It never occurred to me that I wouldn’t have a career. It never occurred to me that I wouldn’t graduate college. It never occurred to me that I wouldn’t marry and have a family. It never occurred to me that I could die in my young adulthood. It never occurred to me that when the time came that I needed a lung transplant, I might not be able to get one.

  If I had understood the likelihood of any of those things in middle school and high school, would I have dedicated myself to academics and athletics like I did? No. If I had thought I couldn’t go to college, I wouldn’t have struggled through the difficult concepts in calculus, stressed about AP and honors classes, or done my summer reading. If I had perceived myself as weak and “terminal,” I wouldn’t have believed I had the strength to play three varsity sports. If I had thought I wasn’t going to be around much longer, I wouldn’t have formed the lasting friendships that now make up the richest parts of my life. If I hadn’t had hope that my future was bright, I would not have stayed resilient throughout months of hospitalizations every year and the inevitable health crises of a chronic illness.

  Any time I feel disappointed by my health limitations now, as an adult, I think about the very best parts of my life. In a way, the thing I question most about my upbringing—my naïveté about my illness and the disappointments it inevitably caused down the line—is the quality that made those very best parts of my life possible. It’s a trade-off; I’ve been disappointed at times, but I have also exceeded beyond imagination since I didn’t plan for early death.

  I wonder sometimes, was it worth it? Should I have been made more aware of my prognosis, been less sheltered from the realities I would face as I aged and my disease progressed? Would that have made things easier or softened the blows as they came?

  Most of the time, I think not. The fears I have now that my teenage self didn’t have to grapple with allowed me to develop a sense of self before getting slammed with doubts, uncertainties, and anxieties that come with chronic progressive illness. My life may have had fewer surprises, but it would certainly have been less full. And some of the worst surprises in my life have often led to the greatest breakthroughs: extreme disappointments that closed one door simultaneously opened others.

  Like many twenty-three-year-olds, I sometimes feel lost and confused and directionless in my career. Throughout college and in my postgrad life, door after door has been closed to me, career-wise, and more and more things I’ve desired have become impossible. I just have to hope that one day, after more experience in my freelance writing career, I will feel grateful that those other doors were closed to clear the way for the right one to finally open.

  10/19/15

  Monday morning, I woke up in my apartment with the pain of a thousand knives collectively stabbing my left mid-back in my left lower lobe. An 8 or 9 on the hospital pain scale—I reserve 10 for being hit by a truck.

  My breaths were shallow and quick as I labored to get enough oxygen. After stumbling out of bed, I walked to the coffeemaker, panting and hunching over with my elbow on the counter. Fuck, I thought to myself. I can’t do this. Whether I can get up and make coffee in the morning is a current metric to gauge whether I’m okay or not.

  “Mom, I need you to drive down,” I said over the phone, sprawled on the bed, searching for a position that would enable me to breathe better. “I’m in pain.” I tried not to cry, but my voice cracked.

  She came quickly to find me drugged up on Vicodin. My deep breaths and coughs were still excruciating. I’ve had blood clots in my lungs and the shocking pain of this mundane Monday morning mimicked the pain of those days spent in the ER, discovering infarction and emboli. It occurred to me that I might have another embolism, and that another day in the ER might be in order. A few hours later, I was on my way to the UCLA hospital in Santa Monica, to find out if (medical) history was repeating itself.

  Imaging tests done in the ER showed no pulmonary embolism and no collapsed lung. But the pain did have a cause: multifocal pneumonia throughout the lower lobes, with a cavitary lesion on the left side. I had finished a course of IV antibiotics just two weeks prior, and there I was, even worse off than before and ready to begin anew.

  * * *

  —

  When the hospitalist assigned to my case told me I was ready to go home after three days in the hospital, I knew she was wrong. In my gut, I knew that despite my outward appearance of normalcy, my lungs were still embroiled in battle. My body was still crushed with fatigue. And all going home would mean was continuing to undergo the exact same treatment and therapy as in the hospital but being responsible for all of it myself with no help.

  Three days in the hospital and two weeks of home IV care later, I returned to my life. But two weeks after that, the crippling pain was back, bringing with it the distinct understanding that someone had fucked up my treatment in a grand way. You don’t recover from a pulmonary exacerbation only to develop pneumonia (significant, severe pneumonia, according to the doctors) just two weeks later, unless the treatment wasn’t right. The fuckup, I think, was a doctor thinking she was doing right by the patient sending her home to recover, when in reality, being sent home before you’re ready doesn’t fix things. The second fuckup was not listening to me when I said I wasn’t ready.

  Now I’m back in the hospital again, far worse than I was when I was first admitted. The depth and frequency and force of my cough is frightening, as is the seemingly inexhaustible well of sticky, gr
een, infected mucus I’m producing and expectorating.

  Slowly I’m improving, getting weaned off the oxygen supplementation, beginning to get up and walk and stretch my legs, hearing promising reactions from doctors that listen to my lungs, that there’s reason to be hopeful.

  We can’t fully blame a doctor who sends us away, who thinks we’re exaggerating our symptoms, even if we end up far sicker than before as a result of treatment cut short. We have to blame the disease, the disease that tries to define us, the disease that none of us asked for, the disease that’s killing us, the disease that, no matter how brutal, binds us together.

  * * *

  —

  The year 2015 has been a tough one for the CF community. It’s been a month since Kari passed and now it’s Melissa who’s gone into free fall. Other patients have said it’s been an unusually brutal year as they, too, have lost friends to CF.

  When someone dies, we all feel the effects, rippling through the network, upsetting the sense of calm that was always an illusion to begin with. We think about them, and how much we’ll miss them, and the loved ones that survive them; but we also think about what it means for ourselves, what we can expect, how we can grieve and cope while continuing to care for ourselves.

  For months, Melissa and I talked nearly every day. I worried about how sick she was feeling and for how long, but it never once occurred to me that on my twenty-third birthday she would be on life support, and I would be in the emergency room, gasping for breath, begging for relief. It’s weird to not be able to talk to her.

  She will struggle, but she is mighty and will survive. New lungs will come. And I, with the help of powerful drugs, will beat back the bacteria inflaming and infecting my lungs like one would hack down forest undergrowth with a machete. I have to believe that. For her, for me. For all of us.

  10/24/15

  Recently, I was running on the treadmill at the gym. More of a slow jog, really, broken up with a minute of walking for every couple of minutes of running. My lungs were searing, and not in a good way. Music was blasting, so I was able to ignore how much my breath was quickening, how erratically my heart was beating. As I slowed to a walk and turned the music down, I felt the spurting feeling I know all too well: like the moment a sprinkler goes off, a blood vessel burst in my lungs and the blood sprayed out, collecting in my airways and gurgling upward to be coughed out.

  Staggering off the treadmill, I made my way to the trash can. I hid behind the half-wall, not wanting other gym patrons to think I had tuberculosis (or any kind of contagious illness). I coughed and coughed and spit out fire-engine-red blood into the towels, which I promptly discarded. Then I gathered my water bottle and phone and left the gym, rattled in more ways than one.

  * * *

  —

  Yoga is the antithesis of exercise programs that try to force insecurity on people and make them feel they are not enough. Yoga urges us to take a deep breath, to be grateful for exactly what our bodies can do on a particular day. Yoga reminds us that whatever health we do have is a miracle not to be taken for granted. Yoga restores peace, confidence, and a sense of spaciousness for those who are claustrophobic within the trap of disease. Most of all, it gives us hope.

  My first attempt at yoga was a ridiculous haze of movements that felt wrong, positions that felt awkward, stretches that felt painful. I was seventeen then, just out of high school and riding the high of being named by my high school Athlete of the Year all four years of school.

  Many women with cystic fibrosis experience a worsening of disease symptoms in their late teens and early twenties. In my case, one or two hospitalizations a year turned into five or six. Friends got used to me popping pills and pushing injections while in the dining room, in lecture halls, and at parties. They got used to me disappearing and did their best to keep me in the loop about life outside of my hospital-home. Acquaintances tended toward confusion at the mismatch between my seemingly healthy outward appearance and the evidence of sickness around me: the needles in my biohazard bin, the catheter in my arm, the syringes sticking out of my purse, the machines filling up my dorm room.

  During that horrific period of change and doubt and fear and humility, I was still on a college club volleyball team. The girls were wonderful and the team was competitive. But I couldn’t stand that my shrinking lung capacity was shrinking my options, both on and off the court.

  So I found my way into a yoga studio. It was Dr. Mohabir’s idea to meet me at yoga one night, and for the first time in a long time I experienced the joy of movement. I shed my self-loathing, because in yoga, we are on our own journey. With no expectations. We move at our pace. The “coach” guides with gentle suggestions, not commands. Child’s pose is always available. And in that particular class, reared back in child’s pose while my doctor pumped out chaturangas (planks), I saw myself in the mirror and realized that there is beauty in rest. Endless beauty in not feeling the need to progress. There is a time and a place for progress, but there’s a time and a place to yield to the idea of just simply existing.

  In the years since my first yoga session, I’ve had months in which I’m on the mat four times a week and months when I don’t practice at all. But it’s a safe space, one for which I will always be grateful for showing me self-love, for showing me peace, for showing me the magic in stillness. When I’m too sick to briskly walk a block, I can still get into the studio, as yoga is not about the physical postures; if I enter the room, become present in my physical body, notice the hurts and the sadness and the love and the beauty, if I control my breath in what little way I’m able to, it’s a success. Yoga shattered the old parameters and built new ones that I love.

  11/3/15

  Back in the hospital again. It’s the ultimate hamster-on-a-wheel scenario: running to stay in place, never getting ahead, time passing by, giving the perception of motion, but with no ground covered.

  11/6/15

  It’s not the big, groundbreaking health events.

  It’s not the scariest set of test results.

  It’s the petty frustrations and humiliations that wear on me, overtax my patience and goodwill, and leave me drained and weakened.

  It’s that moment when you snap at someone because they’re the sixth person to ask you if you’re pregnant, even though the urine test already came back negative.

  It’s when they don’t send an RT for seven hours even though you can’t breathe and are in distress, but you can’t blame anyone in particular because it’s “the system.”

  It’s when your IV antibiotic hasn’t arrived, because it wasn’t ordered. Why not? The dose is weight-based and they don’t have your weight, even though they could’ve taken it at any point during the seven hours you were in the ER.

  It’s when circumstances are so absurd they defy logic.

  It’s when the pharmacist tells you that you can’t keep certain medications at the bedside, medications you’ve kept at the bedside every hospitalization.

  It’s when hospital personnel don’t properly gown and glove for your contact isolation status, but then tell your visitors they need to.

  It’s when you call to ask for hot packs because you’re shivering so much it’s making you cough up a storm, and twenty minutes later you ask again, and twenty minutes later you ask a third time and they tell you not to use them because you have a fever.

  It’s when you finally have a minute alone so you break down and cry, and right then someone walks in to take your vitals.

  It’s when four different people each day ask detailed questions about your bowel movements in front of your visitors.

  It’s when you feel like you’re going to have a panic attack and ask for Ativan, and the doctor on-call makes you seem like a drug-seeker and says no.

  It’s when you want to go to sleep at 9:00 p.m. but can’t because the nurse/pharmacy are so late with meds that by th
e time everything is finally done you can’t sleep.

  11/20/15

  Caleigh is getting new lungs today!!!

  11/28/15

  As I’m stuck in this hospital, I ponder the ever-nagging question: When to disclose?

  In my case, since I grew up in a small bubble in Los Angeles—and went to a K–8 school—my assumption was that everyone knew about my cystic fibrosis early on. They’d heard my cough, seen the high-calorie shakes I chugged in class, watched me pop pills at recess and lunch, noticed I was never in school a full day.

  My family was all about disclosure. I never considered that other patients might handle the issue differently. Mallory’s 65 Roses guaranteed everyone around me knew, since my mom read it to my class each year.

  Near the end of high school, I learned of a patient who had such a mild case of CF that she was able to hide it from everyone she knew. She never took pills in front of people, and she hid her airway clearance and nebulizer equipment from friends. I was stunned—when every minute of your day is in some way focused on the physical needs of your body, how can you hide that from the world? Wouldn’t that task in and of itself exhaust you until you could no longer keep up the healthy façade?

  I took for granted how easy it was when everyone around me already knew about my illness. I liked it that way.

  * * *

  —

  The issue of disclosure became much more pressing for me when I left home, left my tight-knit community for college. On the first day of school, I showed up to my dorm room and began setting up my equipment. Adele and Sabrina, now highly successful medical school students, were intrigued, nonjudgmental, and curious. They had the perfect reaction to rooming with me and it set the tone for me right away that people could hear about my disease and not immediately write me off as either a hyperbolic drama queen or a sickly person that’s too diseased to be fun.