Salt in My Soul

by Mallory Smith

  The Duck Syndrome is a dangerous phenomenon that is not quarantined to Stanford’s campus—I find the same patterns all over sunny California, and despite having left Stanford over a year ago, I still find myself refusing to let anyone peer below the surface and see me furiously paddling to stay afloat when I’m going through a rough time. I want to work on that, acknowledge the ups and downs in life in a way that’s devoid of self-pity and respectful of the fact that things could always be worse.

  For me to be an inspiration, the expectation is that I glide, like a duck defying physics. That is what we want to see, because it gives us hope that it’s what we ourselves can achieve. But when I’m in the ER and in the midst of an acute health crisis, I’m not happily greeting every single person who comes to poke and prod. I’m not thanking any sort of God for the thousands of things I have to be grateful for. When I’m really struggling to breathe, I’m not saying, “Well, I have pneumonia for the third time in two months, but at least I have all my limbs!” Sometimes I have moments when I’m very sick and also very grateful, but other times, I wallow in self-pity temporarily before I rise above it and tackle the next obstacle in my way.

  I discovered that as a sophomore in college. That year was the toughest until that point, with many months spent in the hospital and on IVs and dozens of new complications. One day, I walked out of the triple I shared with Maya and Makiko and went across the hall to the lounge of my dorm, where I lay under the table and sobbed (being underneath tables on the floor is strangely comforting to me in crisis moments). After I was done, I headed to the ER to deal with the current crisis, but I was better able to face it having dealt with my own negative emotions and fears first.

  I’ve found that such is the task of a writer: to help others understand and empathize with a life experience they’ve never lived. Work hard at empathy, and two things will happen: First, you will feel better about your existence. Second, you will find that you’re not so alone after all, and that there’s always somewhere to turn to, even if it’s just the blank page and the blinking cursor.

  I don’t want constant, unwavering happiness. Now, I want perspective. I don’t want to numb the experience of pain. I want to be resilient.

  I’m not an inspiration. I’m just a person, grounded in compassion, striving to achieve empathy and wanting to make my way with goodness and grace.

  5/3/16

  Whenever it happens, I wonder, “Will this be the time?”

  Will this be the time when the blood spilling up my lungs and out my mouth will burst forth so fast that I can’t breathe? The time when I’ll be passed out on the floor from blood loss by the time the ambulance arrives? The time my hemoptysis isn’t just a scare, but the final, swift, deadly bullet?

  This isn’t an entirely unlikely scenario. It’s the scene that flashes for an instant through my mind whenever I cough up frank red blood in bigger-than-tiny quantities. It’s the end my doctor has warned me about for years. Each time it happens, as I cough and cough and wait for the bleeding to subside, my lips a bold Marilyn Monroe red, I’m not scared—it’s too common. But it occurs to me that maybe I should be. Because each time could be that time.

  The locations where it’s happened have been diverse and darkly amusing: On my high school’s front lawn as we ate lunch. In the locker room of a Burton store, unclothed but for one leg stuck in a wetsuit. In the ocean, while surfing. In a backyard, playing spike ball. Lying in bed, awakened from sleep. At my high school after-prom party. At a concert, lungs irritated from secondhand smoke. At volleyball tournaments. At water polo tournaments. At swim meets. In yoga classes. In my parents’ house. In my own apartment, completely alone. In front of strangers as I sat on the curb in front of my family’s favorite steak house. On a bench at the gym, with terrified onlookers. In a plane going across the Pacific Ocean, where all I could do was hope it would stop. On hikes in Hawaii. In a swimming pool. Mid-kiss. The list could go on.

  Often, the comically absurd nature of my parade of hemoptysis-through-random-and-amusing-locations distracts me from fear. I can laugh about it, especially when it’s over and I’m in the clear. But when I reflect back on all these times, it’s rattling to realize just how many times I could have died had the bleeds not stopped. It feels like luck’s been on my side, and odds are that won’t be true forever.

  How do we live with the impending fear of a deadly event? I’ve noticed that as my hemoptysis has worsened, I’ve almost displaced my fear of death onto other, extremely unlikely situations: shark attacks, plane crashes, car accidents, abductions, armed robberies, and other subjects of a paranoid person’s nightmares. Things that never scared me before now terrify me. But simultaneously, in the moment, hemoptysis events that actually could be deadly do not scare me. I can’t psychoanalyze that, but I’m sure someone can.

  5/8/16

  Thinking of my mom as we celebrate Mother’s Day. I am one of the lucky ones, to have scored a family like mine. I won the lottery.

  My selfless mom has spent twenty-three years trying to give me the best life possible: bringing cookies and pasta to every volleyball or water polo game or swim meet in high school; flying up to Northern California to take care of me whenever I was sick in college; encouraging me to pursue my love of sports and the ocean no matter how hard it became; and my personal favorite, embarrassing me for years on end by honking to indicate CBAs (Cute Boy Alerts).

  To be a mother is hard enough without added complications. To be a mother to a kid with a condition you’re told is terminal, and to make that kid’s life incredible and fun and filled with awe and surprise anyway, is miracle work. Beyond that, not everyone can say their mother is their Wingmom, but anyone who knows my mom will attest that she’s the best of the best. She’s a force—beyond her dual jobs caring for Micah and me, and working in PR and marketing, she has managed to mobilize our community and raise over $3 million for CF research since I was diagnosed.

  My mom is my rock. Simply put, I don’t know what I’d do without her. And she learned how to be a mom from her own mom, my grandma, who is the coolest grandma out there.

  5/20/16

  Wednesday I went to clinic and Dr. Mohabir decided to take me off IVs! I was stunned and ecstatic. That’s an understatement. I can’t remember feeling happier in recent history. I was elated. Stoked. Beyond shocked. It was so unexpected. I left the clinic, it was sunny out, I discontinued my meropenem drip, went to Aunt Lissa’s, did some work, and then pulled out my own port (so nice that I can do that with the port, as opposed to the PICC, which someone else has to remove).

  Friday I had a phone interview for a writing job at Tribe Dynamics. I explained to them that I would have to be part-time. And we talked for thirty minutes, then they said if they decided they wanted to proceed, they’d give me a writing and editing assignment as the next step, which they did! I was so happy. Very good for my ego and self-confidence as a writer.

  *1 the coordinator who took over for Jen when Jen became a nurse practitioner

  *2 Stanford Coffee House

  *3 Coram has since been acquired by CVS Pharmacy.

  *4 no food or fluids by mouth

  *5 fresh frozen plasma

  *6 a biochemical process that involves the addition of phosphate to an organic compound

  *7 a process by which methyl groups are added to the DNA molecule

  PART FOUR

  When Mal wasn’t well enough to practice in the pool, her mom would often ask me to take her out for walks around the neighborhood just to get her heart pumping and, as Diane would say, “get the mucus moving.” To me it seemed like that was the extent of it, a nagging case of bronchitis or maybe just a little pesky congestion that needed to be shaken loose. Then on one of these walks Mal started coughing. A lot. I remembered that Diane was always encouraging her to cough up, so I thought, “Hey, this walking is really helping!” And I pushed her to co
ntinue. Then Mal showed me the blood. She didn’t seem all that concerned—and even managed a couple of embarrassed yet composed giggles. I was frozen and felt at that moment like I was the child and she was the adult looking after me.

  —COACH ROB BOWIE

  5/22/16

  So much on my mind right now.

  The past week was amazing, stressful, challenging, exciting, worrisome, busy, anxious, fun. SOOOO fun.

  Tuesday morning I got ready and drove to Pacifica to meet Jack for our first date to go surfing. We met on New Year’s Eve at Ali’s pregame before we went to the Snapchat company party but didn’t see each other again until a few months later when I moved up here. His friend Justin is my roommate’s boyfriend. Ari organized a brunch and invited me. I sat next to Jack. He’s smart, cute, cool.

  We met at Nor Cal Surf Shop, rented boards and wetsuits, and went down to the beach. In the water, he was so sweet, almost protective, pushing me when my arms got tired, making sure I was safe and could catch my breath, etc. There was this moment when I was looking at the houses on the hillside and talking about how beautiful they were and saying how nice it would be to just live there and write and look at the beach and take surf breaks and then go back and write more. And he was looking at me while I was talking about that and it made me feel as if he really liked me. Or maybe he was just attracted to me.

  He caught a couple of waves. My arms were like lead. I needed all the pushes I could get just to paddle out and stay out of the impact zone. Finally when a good wave rolled around for me, he pushed me and I took it. It wasn’t a great ride, the wave died out on me once I stood up, but it was nice to see that at least popping up still felt natural. I didn’t lose that (even if I’ve lost all of my paddling strength).

  After that ride, he caught a wave in so he could help me paddle back out, but it was bad timing, with a big set rolling through. I couldn’t catch my breath since I kept having to turtle, wave after wave. We ended up just paddling in to rest and sat on the beach for a bit. We got onto the sand, and I sat down on my board and he sat down next to me on mine instead of sitting on his. We were chatting for a little, then he asked about my LXV tattoo, and I told him that it was sixty-five, for sixty-five roses, the nickname for cystic fibrosis. And when I was done, he looked at me for a second and said, “You are so beautiful,” and I said thank you, and he leaned in and kissed me. I kissed him back.

  For the rest of the afternoon, Jack and I hung out on the beach, lay in the sun, kissed, chatted, etc. It was lovely, the first beach/surf day I’ve had in so long, and the first time I’d kissed anyone in a very long time. I was so shocked by how the day developed, like it wasn’t reality. I just never ever expected that would happen; even though I kind of suspected that he was into me or attracted to me, I really didn’t think he would just make a move on me like that, especially in broad daylight, especially so soon. It made me happy.

  This week I also had to do the writing assignment for the Tribe Dynamics job, which was a really difficult assignment since I have no experience in marketing. The editing portion was easy, actually, but the research/writing was hard. I have no idea if I did what I was supposed to do, but I worked hard, so if I don’t get the job, it probably means I wasn’t the right fit for it. Now that I’ve turned in the assignment, I’m not stressed about it, but I was super stressed while working on it. I also had articles to write and a chapter for Susan’s book plus a creative nonfiction piece for a blog Natalie wants to create. So work has been nutty, but rewarding and interesting. After this week I feel proud of myself for my versatility and progress as a writer.

  Friday was such a crazy day. I got home at like 9:00 p.m. after ten hours out of the house. I still had to do treatment.

  The next night I had another date with Jack that went really well. The museum we went to was a bit strange but very interesting, and he was fun to hang out with. It felt very, very couple-y. After the museum we went to a restaurant about a fifteen-minute walk away, a little French place. We both got burgers and cocktails. It was delicious and we had a lot of fun. He said he was thinking about coming down to L.A. to hang out with me before going to San Diego to see his mom. I said I thought it was a great idea. He said he didn’t want to put any pressure on things or make things weird (by meeting my family). I said it would be great.

  Jack says he wants to take things slowly, I think basically to establish that there’s more to us than attraction. That’s the reason he planned a whole date near the Caltrain station, so he wouldn’t be tempted to come back and stay over at my place. I told him I respected that and was fine with taking things slowly. It seemed early to leave the city at 8:15, but given what he said about taking things slow, it made sense. I like how we’re honest with each other and communicative because I feel like I know what’s going on.

  6/1/16

  Memorial Day weekend I got to go home and see my family and friends! My plan had been to surf every day while at home, but I had fevers and learned the hard way that surfing with a fever and shortness of breath is dangerous. I asked myself the questions that come up each time I’m struck with my four classic sickness symptoms (shortness of breath, fatigue, fever, and hemoptysis): Do I need to call Stanford? Do I need to go to the ER now? Not wanting to get stuck admitted at a hospital in L.A. with an order from Stanford doctors not to fly back north, I didn’t call anyone and got through the week. I had a secondary motive to hide symptoms—I wanted to see my friends Alex and Hannah become Mr. and Mrs. Rosenthal that weekend, the original reason for my trip to L.A. and a wedding I would have been devastated to miss.

  Jack came to L.A. that next weekend and met my parents and grandparents!

  I made it through the week, went to the wedding, happily dancing and celebrating the newlyweds as long as I could before needing to sit down and enjoy the night from my seat. Later that night, my fever spiked, and I knew that I would be admitted and go back on IV antibiotics as soon as I got back up north. I tossed and turned all night, hoping that I wasn’t sabotaging my own body by not going to the emergency room right then.

  6/10/16

  With a burgeoning relationship, I wonder how much to divulge to Jack about the possibility that dire things could happen to me, and my fears that they will. My physical fragility and my underlying emotional anxiety. Will he run away? Will he view me as too fragile and stop seeing me as an equal, a partner? Will he want to go the long course with someone who might not be able to make it to the finish line? Or will he make up some excuse and duck out once he realizes the reality of this fucked-up, shitty, relentless, unforgiving, merciless disease?

  The other thing on my mind right now is travel. We have a trip to Vegas planned in just about a month now. We’re going to be flying together early Friday afternoon and coming back late Sunday night. With how my GI problems have been and my own irrational fear of exposing GI issues to a significant other (the details at least), I’m terrified at the idea of sharing a hotel room and having no privacy. I’m worried I won’t sleep, I’m worried that if I’m not already sick when I go, it’s 100 percent inevitable that I will leave sick. I worry about the fact that I can’t just plan a trip to Vegas with a new boyfriend (I think that’s what he is) and be excited about it. I wonder if I will ever be able to plan trips and feel excited again, or if I will always have anxieties, especially these particular ones that I don’t feel capable of discussing with anyone (other than my parents). Can I send him off to breakfast with the other people and stay in the room and do treatment/go to the bathroom in privacy? I just don’t see him wanting to leave me and go with other people. He also brought up the fact that toward the end of summer, he’s going to his family’s lake house property in Maine, and that he was thinking of inviting me and another couple. It’s terrifying, but I’m so happy that he wants me to come.

  6/12/16

  On June 8, when I saw my Stanford doctors, I reentered the hospital and resumed
the same IV and oral antibiotic regimen I had discontinued just four weeks prior. We planned for three to six weeks on the course, and a few days later, after some improvement in my clinical symptoms, the doctors discharged me and allowed me to go home on home therapy. The drugs began to work, and again, I felt a wave of relief wash over me as I resumed my daily routine of work, treatments, exercise, and evening plans with friends.

  But after a week, I began to decline again, and found myself struggling with the fateful four harbingers of a pulmonary exacerbation. This time was different, though—I was already on IVs. How could I be getting worse while on antibiotic therapy? What could I be doing differently? I stayed home all week, cooked the most nutritious foods I could think of, slept a ton, and did extra treatments, but still, the symptoms persisted.

  6/19/16

  It’s Father’s Day so I’m thinking about my dad. He’s amazing—the one responsible for my intellectual curiosity and my philosophical musings, he’s driven thousands of miles on road trips with me (with many Denny’s stops along the way), he’s spent hundreds of nights on a chair or cot at my bedside in the hospital, he selflessly puts his family before himself no matter what. He’s my own personal lawyer, fighting to get me every drug my insurance company tries to deny.

  7/5/16

  By the time I went to clinic, I knew my lung function would be down (it was, by almost 10 percent) and that the doctors would want to admit me again to change the plan. Being mentally prepared for an admission helps. My bag was filled with snacks, a phone charger, my laptop, a book, extra underwear, a toothbrush, and certain medications I need that the hospital doesn’t carry. I walked from clinic to the admitting desk, signed papers to appoint my mom and dad as the decision makers for me if I were to become incapacitated, and ate dinner in the cafeteria.