Salt in My Soul Read online

Since my right lung sounded junky and my lung function had dropped, they were pushing for admission. My mom popped out with, “Can she go to Hawaii instead?” It caught me off guard but what was more surprising was they said yes. And all of a sudden it was settled!

  It feels like I picked myself up out of one life and planted myself in another. I was in the middle of the quarter (week 8) frustrated by the amount of work and meetings and projects and nervous about a midterm, and now all of that has just fallen by the wayside. I brought some work with me but I feel way less stressed and think R and R accelerates the healing process.

  The trip has been incredible so far. I’m here with my dad (my mom was busy with work) and it’s been wonderful. We’re staying at the Royal Hawaiian in Waikiki, which is a change from Wailea. Hoping to meet young people since I didn’t bring a friend. Every day I get up and do treatment, then we have breakfast (usually at the café across the street, honey latte and açai bowl), then go down to the beach, and I surf for an hour or so, then relax by the pool, then back in the ocean, come up for a second treatment, and after that either go back down for more ocean/pool time or I go into town for yoga or Pilates. It’s been restful and healing, and great quality time with Pidge.

  There’s a very cute surfboard rental guy who started chatting with me yesterday when I was taking a board out…he gave me some of his wax and offered advice about which boards were good. He seems shy but so sweet.

  Today my dad and I had tea and coffee at the restaurant by the pool since I wasn’t feeling well enough to surf in the morning (nausea), and I was looking for him and kept seeing him wandering around and I saw him go out with a board but couldn’t figure out how to go up to him. Around 2:30 I rented a board and was paddling out and saw him paddling in from afar (it looked like he was giving some girl a lesson). He waved at me!

  Later, when I was done surfing, I went over to the towel place where he was stationed to chat more. He was looking at footage of dolphins he took on a GoPro while surfing, so we talked about that for a bit, but then he had to get back to work. I’m going to try to go out earlier tomorrow morning, and surf before treatment at 9:00, and maybe he’ll be out there and I can talk to him! It’s nice to have someone cute in the same age range to talk to, even if it’s nothing more than that.

  11/17/13

  This trip has had a couple of surprising turns of events.

  Made progress with Shawn! I finally learned his name. Every day I would see him at the stand where he works, or in the water, but usually just say a few words and smile, because he was busy with work. I would also see him while he was giving lessons and we would wave at each other. Finally, yesterday he came up to me in the water on his board (he was the photographer that day, not the surf instructor, so he had more time to chill once he finished with the photos) and we had a pretty long conversation. It turned out to be an incredible week—we actually went night surfing!

  SO bummed to go home. Going back to schoolwork, obligations, no ocean, no boys I’m interested in…I mean, I’ll be happy once I’m there. But this was the most incredible way of decompressing, getting healthy once again, expanding my comfort zone (by hanging out myself so much and putting myself out there to meet people—I also made other friends on the beach), improving my surfing, proving to myself and others that the ocean really does heal me.

  12/8/13

  I’m finally processing a traumatic event that happened at the end of September, and am ready to write about it:

  I lay on a stretcher in an ambulance, watching as familiar places on campus blurred past the window: the eucalyptus forests I used to be able to run through, the looming trees lining Palm Drive, my freshman dorm, the gym where I played volleyball. The paramedic scribbled notes and my hands clutched a huge stack of paper towels that were saturated with the caked blood that had been inside me just a few minutes before. With quick, shallow breaths, I tried to take in air without bursting any more fragile blood vessels in my scarred airways.

  Arriving at the ER, I was whisked past the long line of waiting patients into a private room. The nature of my emergency demanded that I be ushered straight in, bypassing the waiting room and the triage station.

  My parents met me in the room. They stroked my hair, looking worried.

  “Thank God we didn’t go home yet,” my mom said. “What if we had already left?”

  As if my mom would leave when I was still sick…

  The pulmonologist on call came into my room. “So,” he began, in a somber tone, “why don’t you tell me what happened?”

  “I moved back to school two weeks ago, and three days later was admitted to the hospital for a severe lung function decline,” I explained. “I’ve been on triple IV antibiotic therapy since then. I was released two days ago to move back to the dorm and continue IV therapy there. Tonight I woke up at 2:00 a.m., needing to cough. I could feel the blood pooling in my lungs. I coughed up about a half a cup of blood. It felt like it was never going to stop.”

  I didn’t say that when I woke up, my first coherent thought had been that an episode of hemoptysis was coming. I didn’t tell the doctor how I’d grabbed the paper towels by my bedside as blood surged up into my throat, or how, not wanting to stain the bed, I’d rolled onto the floor and stayed there, coughing up blood. How each inhalation had brought more of the sticky red; no breath, no matter how shallow, felt safe. Moving was impossible; it would have deepened my breaths and worsened the situation, so I’d remained on my side, aware, between coughs, of the coldness and hardness of the wood floor. I felt like I was drowning. Knowing I’d have to report the quantity of blood to the doctors, I spread paper towels across the floor to absorb it. The white squares were splattered with pools of blood, resembling a morbid piece of modern art.

  When I could feel the flood subside a bit, I staggered to my desk to call 9-1-1. Breathless, I explained the emergency and requested that an ambulance be dispatched immediately. The woman on the phone did not understand that every question she asked me to answer caused more rupturing and more blood. Our one-minute conversation felt painfully long and drawn out. When she finally agreed to send an ambulance, I hung up, then texted my parents to meet me at the ER.

  The doctor took notes as I talked and asked the usual questions about my medical history. There was nothing he could do but admit me and so I was wheeled on my gurney to a real room. It was crushing to be back in so soon; I had hoped I might get at least a couple of months of respite.

  A few hours later, Dr. Mohabir came to see me.

  “This is really serious, Mallory,” he said, standing at the foot of my bed in his yellow isolation gown. “Sub-massive bleeds almost always result in massive bleeds soon after. We’ll keep you another week for observation. No food or water for forty-eight hours, in case we need to do surgery. No treatments; your airways need to rest. Take it very easy.” And then, because he knew that the school year was about to start, “I know this is bad timing, but this is a life-threatening emergency.”

  12/9/13

  It’s interesting that after all these years there’s one word everyone uses to describe daily therapy—treatment. My dad used to call it Pat Pat as part of the game he called Astronaut and Pat Pat to help me be okay with the manual therapy they started on me at the age of three. I hated when he’d pound my chest to loosen the mucus so I used to hide. I came to understand that my dad created a game and my mom wrote Mallory’s 65 Roses to help me understand why I had to do treatment every day.*9

  When I was five I got my first vest to do chest percussion therapy (CPT). Now, as an outpatient, I do it two to three times a day for about two hours in total. Inpatient protocol calls for CPT four times a day. My vest is a black (it also comes in pink) inflatable ensemble that shakes the bloody hell out of my lungs, mobilizes mucus, and looks ridiculous. During this loud and strange-looking ritual, I also inhale four medications back to back through a nebulizer, which
many bewildered and envious college students have mistaken for a vaporizer. My outpatient machines give me a look that combines astronaut-launching-into-space with fierce-policewoman-wearing-bulletproof-vest.

  As an inpatient, a respiratory therapist comes every four hours and does different forms of CPT: sometimes vest; sometimes G5, a black handheld toy that looks like a giant vibrator; sometimes IPV, an aggressive nebulizer that shakes the lungs from inside out; and sometimes manual percussion, which involves the therapist flipping me upside down and beating my chest and back like a drummer at a rock concert for two arduous minutes in each of eight different positions. My method of choice in the hospital is manual percussion because it’s not only effective but also hilarious.

  These days I still find myself struggling to integrate the implications of this disease and the accompanying complicated medical regimen into my fragmented life, to unify disparate elements from the “real world” and the “sick world” into one cohesive existence. But the world of chronic illness—with mucus, blood, infection, hospitals, and fear—doesn’t fit very neatly into the typical college experience—the other world of dorms, meal plans, parties, GPAs, and recklessness.

  My life on campus is a parallel universe that I sometimes feel part of, but often not, because of the ticking time bomb inside my body—a bomb that often blows to bits any sense of normalcy. The true home base of my daily reality is Stanford Hospital.

  Many people have some notion of a “second home”—a sleepaway camp, their grandparents’ house. My second home is now Stanford Hospital. During my most recent stay, the one that began with that ambulance ride across campus, I started thinking about how hospitals, to me, are so much more than a physical infrastructure; they act as a sort of ad hoc community center for those of us living in the parallel existence of chronic illness. Chronic illness interferes with social connections, but it can also create other, more powerful opportunities for community. In defining my college experience and even my identity, few places have mattered more than Stanford Hospital.

  That morning, when the blinds of my hospital room were finally opened, I squinted, bleary-eyed, into the unfamiliar eyes of an unknown man in scrubs. There’s some kind of color-coding system in place to help patients identify the role of each hospital worker based on the color of their scrubs, but I’ve yet to figure it out. This youngish, wiry-framed man identified himself as an interventional radiologist, and while I wrestled with my sheets and the controls on the bed, trying to sit myself up, he launched into a speech full of detailed information about the cauterization procedure I would have to undergo if I coughed up any more blood. My mom gripped the edge of the bed and I saw fear in her eyes. Groggy and cranky, I couldn’t pay attention. Instead, I repeated orders in my head for him to leave me alone and let me sleep. Unfortunately, he did not seem to receive my telepathic commands.

  When he left, I looked at the clock. Ten o’clock. My first class of junior year, an economics course, was beginning a short way away on campus. I imagined the sound of the hourly bells and pictured myself doing what I should have been doing: waking up a little earlier than necessary, taking too long to get ready, racing across campus on my bike, walking into class winded and windblown, grabbing a seat in back. I saw a tear splash on the sheet before I realized I was crying. Shivering, with my arm hair standing on end, I buzzed the nurses’ station for another blanket. Hospitals are always so damned cold.

  * * *

  —

  My first two days in-house I was kept busy by doctors and nurses. I slept, avoided thoughts of food or water, and wondered whether it was worth the effort to shower. On the third morning I was finally allowed to eat. This was a big deal because it meant I had made it past the forty-eight-hour period during which the risk for a massive hemoptysis episode is highest. To celebrate, I ordered four scrambled eggs with pepper, French toast, yogurt, coffee, pineapple, grapes, and peanut butter. Hospital food had never tasted so good.

  I was also allowed to start CPT again, but gently. I was just as relieved about this. I hated being caught in the catch-22 of hemoptysis. Hemoptysis is caused by infection, but when it happens, you have to stop doing CPT treatments, which you do to fight infection. The infection and mucus pooling then worsen, causing more scarring and rupturing of the airways, eventually leading to more hemoptysis.

  Despite the awkwardness of these bizarre CPT rituals (or perhaps because of it), I’ve gotten close to many of the respiratory therapists. That morning Jainko was assigned to my room. Through her many visits we chat about our favorite teas, books, and countries while I hyperventilate and try to keep my ribs unbroken.

  Halfway through this first treatment, Martina, one of the housekeepers, walked in to say hi. “¡Cómo me alegra verte! ¡Ojalá no estés muy enferma!” Translated that means, “Nice to see you, hope you’re not really sick!” During my last visit, Martina had told me she has three daughters, and one has a derelict boyfriend. She’s cleaned my room every time I’ve been hospitalized during the past two years. It’s nice to see a familiar face who brings no bad news, just good conversations and compassion.

  I awoke early on my fourth day to Dr. Mohabir’s signature enthusiastic knock.

  “How much longer do I have to stay?” I asked, knowing I probably wouldn’t get the answer I wanted. “It’s Thursday and I haven’t had any hemoptysis since Sunday night.”

  “We can’t rush this. You’re still at risk for a major bleed, so I don’t want you leaving until I’m confident that it won’t happen again right after you leave. That means we have to build up to full force on your CPT, and you have to build up to doing some physical activity while you’re here to make sure walking won’t trigger another episode.”

  His words gave me my goal for the day: taking my first walk. My mom yelped with joy; she’d been asking every day since I arrived when she could start forcing me to move. This is a constant battle between us when I’m in the hospital. She has the mindset of the coach of an Olympic athlete and looks to the doctor for backup when I don’t want to comply with her walking demands. The doctor tries to stay out of the debate by saying, “Whatever she feels up to doing. She’ll know how much is too much.” I usually don’t fight her anymore—resisting is more draining than the walk itself. But this admission, Dr. Mohabir had said no walking until he gave permission; my mom had been quietly dying inside at my lack of physical activity. The look on her face when she was told she could resume her role as drill sergeant was one of pure joy.

  My walk that day didn’t go very well. After five minutes I couldn’t breathe. Coughing fits are too hard on the lungs when they’re fragile, so I had to stop. This was very distressing to my mother. But Dr. Mohabir reassured her, “One day at a time. She’s not going from 0 to 180 in a day.”

  Besides his expertise in B. cepacia, one of the reasons I trust Dr. M so much is because he seems to care about me. Once, when I sat in clinic a couple of days after being released from a hospitalization, he could tell I was pretty down. I had just spent a bit of time talking to the social worker about what a hard time I was having, and my eyes were puffy and red-rimmed despite my best efforts to hold back tears. He looked sad for me when I mentioned that I felt physically limited and wasn’t optimistic about gaining back my athletic ability.

  “What do you want to do, Mal?” he asked. I was puzzled; I didn’t really understand the question. “Personally, I just want freedom,” he said. “I work out so I can have freedom. A few months ago when I presented my research at the international CF conference in Ireland, I decided afterward to run around Lough Neagh. It’s the biggest lake in Ireland, 151 miles around.”

  I didn’t really know where this story was going, but this was the first time he had ever told me something in detail about his personal life. “You just decided to run it? Like straight through without stopping? How long did that take?!” I was absolutely incredulous.

  “No, no, not str
aight through,” he responded, chuckling a bit at the thought. “I just put together a light backpack and decided to start running. It took me nine days. I didn’t run the entire way. Sometimes I would run for two minutes and get tired and decide to walk for a while. Other times I would run ten miles straight. The point is, I just wanted to be able to see the place in its entirety, and running the perimeter of the lake was the easiest way to do that.”

  “But…where did you sleep?” I had so many logistical questions, I couldn’t really focus on the larger point he was trying to make. “Did you pack food and water? A change of clothes?”

  “There were places along the way to buy water and food. As for sleeping, each night I knocked on the door of a friendly-looking house and said, ‘I’m a physician from the U.S. here for an international research conference. I’m running around Lough Neagh and I need a place to sleep for the night. I have my own blanket, but can I sleep in your backyard?’ Every single person I asked let me come in and insisted that I sleep inside the house instead of the backyard. They all gave me a hearty breakfast in the morning.”

  I was amazed at the spontaneity of this adventure, but even more amazed by the fact that Dr. Mohabir lives the life I’ve always dreamed about. My childhood fantasies were peppered with notions of adventure, spontaneity, and simplicity. As I got older and came to understand my dependence on modern technology, electricity, first-world medical facilities, and strict daily schedules, I longed for these fantasies even more. Nothing seemed more appealing to me than living off the grid, without material luxuries, or traveling on a whim, with no dependence on money, people, or places. I’m happy for others when I hear about their adventures, but my genuine happiness is tainted with pangs of jealousy because I’ll never be able to do that. CF ties patients to their parents, their treatment schedule, their hospital, and modern technology; freedom, for me, represents the foundation of an unattainable alternate life, the life I would lead if not for CF. After hearing his story, I understood that he was trying to ask: What is it that I want to be able to do with my life? What do I need physical strength for?