Butterflies & Characters

by Liz Hsu

  At his words, a chill slithered through my belly stronger than I’d ever felt before. I hiccupped a little, worrying I might vomit. I stared down at my bright white toes. I’d never been admitted to a hospital.

  “Dr. Ezra and I will do your workup and order some tests,” Dr. Murray said. “We will see you both this afternoon and have more information for you then. Tony will be in in a few minutes with the details.”

  With a nod, they left. I felt myself gasping for breath and coughing violently as the cold blue door shut. Admitted? Tachycardia and Dyspnea? What was going on?

  Dad stood and wrapped an arm around me, kissing me gently on the forehead. “You’re going to be okay, sweetheart. I’ll make sure they take good care of you.” I turned my face into his chest, realizing I was crying as tears soaked the fabric of his shirt. “I’m going to call your mom.”

  I heard her pick up after two rings. “Nils,” she said in a slightly aggressive voice. His arm tightened on me. I knew they’d had sex at least once, but it was hard to imagine. I’d never met two people more oil and vinegar than them.

  “Chrissy.” He was clearly trying to remain calm, but his voice had a pinch it didn’t have a moment ago. “Ray’s sick.”

  Her sigh made me flinch as I remembered how annoyed she’d been with taking me to the doctor yesterday. “Nils, she has a sunburn. I took her to the doctor, and he wasn’t worried. I need to go to my manicure soon; I can’t talk long.”

  Dad’s hand on my shoulder tightened again. Now it seemed he no longer cared about keeping the strain out of his voice. “It isn’t a sunburn. She’s being admitted to the hospital. They haven’t told us what it is, but they want to monitor her until her test results come back.”

  “That’s ridiculous. She was just running on the beach two days ago. Mark and I don’t want to pay an out-of-network hospital charge for a healthy kid. Dr. Brown’s been practicing for thirty years and wasn’t worried at all.”

  “Chrissy.” He dragged her name out in exasperation, his voice turning to ice. “She is being admitted to the hospital.”

  “If it turns out nothing is wrong, you’re paying the bill,” Mom responded in her normal flippant voice, like she’s convinced my whole goal in life was to annoy her. Like I made the condom break to ruin her life.

  Dad let go of me and began pacing more violently than I’d ever seen someone pace. “For fuck’s sake, Chrissy, did you hear a goddamned word I just said? Our daughter is getting admitted to the hospital. I’ll have her text you later. I can’t have this conversation right now.”

  As he hung up, she kept talking. While I couldn’t make out what she was saying, I was sure it had to do with not cussing or taking the Lord’s name in vain.

  Dad’s expression was hard, his cheeks red. When he noticed me staring at him, his face softened. “I’m sorry I cussed in front of you, sweetie.”

  He offered me a tissue from the box in the room before handing me my shoes and socks. I wiped my face. The shock of Dad cussing at Mom, something no one I knew would dare to do, had startled the tears right out of me. I was done crying.

  I had one shoe on when Tony entered.

  “Hi, Ray, we are going to get some blood drawn, and a transport person will take you down to get admitted and then to get a chest X-ray. Once you’re done with that, they will take you to a room. Ready?”

  I nodded, and Dad and I followed him out. I watched in surreal fascination as he drew about ten vials of blood and put one in a nearby machine while I sat waiting for a wheelchair to take me to the admission desk. I wondered what all they were testing for. I’d never realized how much blood talked.

  As we waited, Dr. Ezra walked by and Tony said casually, “Stat platelets are at forty thousand.” It must have been important, but I didn’t know what normal platelets were.

  “I’ll let Dr. Murray know,” he said, right as a young woman came with a wheelchair for me. I tried to protest, but everyone insisted.

  The trip to admissions, chest X-ray, and then my hospital room seemed to go quickly, or maybe I was spacy because I was in shock. I was certainly friggin’ tired. Before I knew it, Dad and I were sitting in the hospital room, and as much as I hated to admit it, I barely had the energy to move. I wanted to look up some questions and terms, but I couldn’t muster the strength to lift my head off the pillow, and it hurt just thinking of typing on my phone. I must have fallen asleep, because I was jolted awake by Dr. Murray saying my name.

  After giving me a moment to collect myself, she started again. “Ray, we are still waiting on some of your tests that take a few days, but from the test we have gotten back, we can confidently diagnose you with systemic lupus erythematosus, or lupus, SLE for short. It’s an autoimmune disease and not something contagious. Have you ever heard of that?”

  Suddenly, I was wide awake as I shook my head. I was slightly embarrassed by the relief pouring through me. I wasn’t a neurotic mess. I wasn’t a hypochondriac. Something was wrong.

  “The American College of Rheumatology requires four out of eleven symptoms to be diagnosed. Ray, you have eight currently.”

  She handed me a sheet with eight numbers circled titled, 1997 Update of the 1982 American College of Rheumatology Revised Criteria for Classification of Systemic Lupus Erythematosus.

  She pointed at to the numbers as she spoke. “The rash on your face is called a malar rash, or sometimes the butterfly rash, and the one on your arm is called a discoid rash. Your platelets are far below normal, and your ANA test is strongly positive. You have positive antiphospholipid antibodies present, as well as a strongly positive anti-dsDNA antibody test. You show clear arthritis in several joints, another SLE marker. The whiteness in your hands and toes indicated you have Raynaud’s, present in about a third of SLE patients. None of this would have made me admit you, except maybe the platelets, but I would have started to treat you immediately. However, your shortness of breath gave us all pause. You have fluid around your heart called pericarditis.”

  She paused for a minute, clearly realizing she might have overwhelmed me. I clutched the paper in my hand. I’d research on my own because I didn’t understand most of what she’d been saying. I was sure my eyes were glazing over. I only really understood heart and arthritis, which I thought I was way too young to have problems with.

  She handed me another packet of papers. “I’m going to let you read a little about lupus, but in the simplest terms, your body is confused, and your cells are attacking your body. Sun can trigger it. We’ve started you on three lupus medications. Your body, your immune system specifically, is attacking your own joints, skin, and, unfortunately, also your heart. We need to stop that immediately. One is a strong IV steroid to reduce the inflammation, especially around your heart. We will monitor your heart closely for a little bit. If that works, you can go home in a few days, and if it doesn’t, we’ll need to drain the fluid surgically.”

  “Will Ray have lupus forever?” Dad asked, reminding me he was there.

  The doctor’s amber eyes held us both for a moment before she nodded. “Yes. Currently, there is no cure. Lupus is a chronic and lifelong disease.”

  “Am I dying?” I heard the fear in my words. While I was relieved my symptoms had a name, I was also scared. Forever. How long would that be?

  “No.” She patted my shoulder ever so gently, as if aware my whole body hurt. “But your body is attacking itself. It shouldn’t. You’ll be on immune suppressants and steroids to turn off your immune system, but it doesn’t have an on-and-off switch. It could take days or weeks, but right now the fluid is just around your heart and you are not showing signs of heart failure. It’s good we caught it when we did. Lupus is a disease that flares. You are having a flare. If it goes inactive, you can go weeks, months, even years with no symptoms. But you’ll be on medication for the rest of your life.”

  “A lot of people—doctors—have been by,” Dad said
with concern in his voice.

  “Yes. The University of Michigan is a teaching hospital, so you might see medical students, residents, and fellows. But I will also be monitoring your case with Dr. Ezra. We’re going to take good care of you,” she said to me. “Do you have any other questions?”

  I shook my head no.

  “Why don’t you read a little and we can talk in the morning?”

  “Yes, ma’am. Thank you, Dr. Murray.”

  I began devouring the packets as Dad asked about getting some paperwork together to try to cancel our flight to Sweden tomorrow. I tried to process term after term, having a hard time taking it in. I knew Dad wouldn’t want to talk to Mom again, so I texted her, I have lupus and pericarditis. Go to www.lupus.org for more information, using the website recommended by one of the packets.

  The room had gone silent. My dad was rubbing his neck and gazing at me with an expression that made me anxious.

  “You can go home for a little bit and work on the flights. I’ll be fine here. When you come back, can you bring my phone charger? Oh, and my Kindle.” I was surprised my voice sounded so calm when I felt like I’d been caught in a riptide. But I couldn’t read these all night. I needed something to tune out this room and the fear bubbling inside me.

  He stood up and kissed my temple again. “Sure, sweetheart. I’ll be back soon. Your phone is okay on battery now?”

  I nodded.

  “Call me if you need anything. I’ll be gone an hour, maybe two, and I’ll bring stuff to spend the night.”

  “You don’t have to sleep here. I don’t want to inconvenience you. I’ll—”

  Dad held a hand out to me, but his shoulders sagged. “Ray, I know your mom fills your head with whatever she says, and I’ll admit, I let her. You live with her and she’s your mom, but sweetheart, your words hurt me and—” His eyes drifted to the corner of the room and then returned to me with resolve. “I want to be clear: I never told your mom to have an abortion. The morning after, I asked her to take Plan B, but she didn’t. When she said she was pregnant, I asked what she was going to do. She was nineteen, and it was her body.” He took my hand. “Just like what happens to your body should be your decision.”

  He dropped my hand and his shoulders hunched more. “She asked me to marry her when she found out about you. But sweetheart, even for you, I couldn’t. As soon as I finished my Ph.D., I moved to America to be closer to you. I know she says I didn’t support you when you were a baby, and she’s right. I was a graduate student in London. I lived in a basement. I had nothing.” He was pacing with renewed agitation now. “But your Farfar and Mormor sent her money, and I’ve paid them back. I’m not American, Ray. I couldn’t just move here. It took years to finish my degree, get a job, and get the visa paperwork sorted. Years when I could only see you on Skype. I’m a U.S. permanent resident for you. I will be here tonight.” A tear rolled down his cheek, and he pulled me close. “You are my daughter, and I love you.” He pulled me to him.

  “She said you never wanted me. She said you wanted an abortion. I didn’t know,” I whispered against his chest. I’d always wanted to believe, no matter what my mom said, that my father loved me. But her stories about him had been so harsh. After letting him hold me for several minutes, I pulled away and asked, “Why didn’t you ever tell me?”

  His cheeks pinkened. “Like I said, she’s your mom, and I didn’t want you to hate her, either. You were too young to understand before.”

  I took pity on him as relief and love filled me. “Thank you for telling me,” I said quietly.

  Dad just nodded. “Are you sure it’s okay to leave you for a little while? I could just stay…”

  “It’s okay. I’d actually like to be alone to make a few phone calls.” That was the truth.

  He made sure they knew I was in the room by myself, and I had the nurse call button. Then he left after the nurse gave me some medications. Alone in the dreary, colorless hospital room, I decided to call Ross.

  “Hey, Rayanne, I’m about to go back on the field. What’s up?” He sounded a little uneasy. I glanced at the clock—I should have realized he was at football.

  I didn’t know where to begin, but I tried. “I’m in the hospital.”

  “Shit, are you all right?” True concern filled his voice as it softened the way it usually did just for me.

  “Yes, well, no—I don’t know,” I stuttered out. “They said I have lupus, and something’s wrong with my heart.”

  “What the hell is that?” His voice dropped to an anxious whisper. “Am I going to get it? Do I need to go to the doctor?”

  “No,” I said quickly, trying to alleviate his panic. “No, it’s not contagious.”

  “God, girl, you just about gave me a heart attack.” Annoyance ran through me at the relief in his voice. No, I didn’t want him to be sick, but he sounded like he cared more about himself than me. I waited in silence for him to ask me what was going on. Some romantic part of me imagined him asking to fly out here. Finally, he said, “Well, I need to get back on the field. I’ll call you later?”

  “Bye.”

  Did he care at all? After that, I didn’t think I could stomach another call, so I texted Carolyn and Jeffery the same message. Hey, just wanted to let you know…I’m ok, but I’m in the hospital. I have lupus and pericarditis. Dr. said this is a good website www.lupus.org. My battery is low. <3

  I reviewed the papers on lupus and searched about it on the Lupus Foundation of America’s website.

  Forever. This frightening, painful disease was my new forever.

  I yawned my way into the kitchen and poured myself a big cup of coffee. My programming internship was cool, but it was annoying getting up early every weekday. Like it wasn’t even really summer. Taking my first sip of coffee, I opened the fridge to decide what to eat, blinking in surprise at the copious amounts of tea eggs inside. There must have been two dozen still in the marinade. Weird. Normally we only made that many for New Year’s.

  With a shrug, I closed the door and yelled, “Ma! Are the tea eggs ready?”

  Ma came busting into the kitchen. “Those are for Professor Ericson, not you,” she fired back in Mandarin, swiping the container and placing it on the counter next to the sink.

  I frowned and took another sip of coffee. “Ma, they can’t take eggs to Sweden.”

  She opened her purse, pulled out a ten-dollar bill, and hurried back to the eggs with little Tupperwares. “Have breakfast on me today,” she said, holding out the money. “Ray is in the hospital. Dr. Ericson doesn’t need to worry about food. I’ll take him the tea eggs and our leftovers from the noodle house.”

  I left the bill flopping in her hand. That was why she hadn’t texted me back? “Why is Ray in the hospital?”

  She pushed the ten at me and I finally took it. “She is having a heart problem.”

  Remembering her labored breathing, I started to sweat. “Is she going to be all right?”

  She paused her egg peeling, frowned, and said, “Call your baba, he’s the doctor. But don’t forget you have work.”

  I nodded and called my father for a brief update on Ray. He said she had been diagnosed with lupus, an autoimmune disease she’d have for the rest of her life. The named seemed hauntingly familiar, but I knew nothing about it and couldn’t figure out where I’d heard it. Baba said he’d email me some articles from UpToDate. I knew what I’d be doing over my lunch break.

  I squeezed the phone after we hung up. Poor Ray. She didn’t even have any friends here. I couldn’t imagine how scared and alone she must be feeling. I had to see her.

  When I went back to the kitchen, Ma was still peeling the eggs and putting them in Tupperware. “Can we go see her when I finish work?”

  She stopped, looking momentarily surprised, then smiled. “Jia Jia,” she said, using my short Chinese name affectionately, “we can go.”


  I felt uneasy the rest of the day. I was able to get the program live, but it didn’t hold the joy it would have the day before. At lunch, I didn’t have much time to skim through what Baba sent, but from what I read, lupus was more serious than I thought. I found myself counting the minutes until I could go see Ray. I remembered how happy she’d been when we went sledding over winter break and how infectious her laugh had been as she’d twirled, catching snowflakes. She’d looked beautiful and so alive. That had been the last time I’d seen her before last night.

  Hours later, Ma and I searched for her room through the long, twisting corridors of the hospital. Carts squeaked by, machines beeped, and rumbling evening news channels created a disharmonious cacophony as we searched. Some families we passed had vacant eyes and others tear-stained cheeks.

  “Code Blue Four North one-one-one,” blared overhead twice, and feet thundered down the previously desolate corridors. We scuttled past a rapidly filling room as I heard a girl’s voice demand firmly, “Who’s keeping time?”

  Followed by a male’s deep, “Timing starting now.”

  We kept striding past the now-vacated nurses’ station and around a bend. Her room sat far and oblivious to the unfolding emergency. It felt wrong to be visiting Ray in here where people were critically ill and dying. I tightened my grip on the stuffed animal we’d purchased for her.

  Her room was silent, save the beeping of a heart monitor. She had her nose buried in her Kindle, her dad nearby with his laptop open. Despite the setting and the clamor of someone coding down the hallway, in the quiet of this room, the two seemed relaxed.

  “Hi, Ray,” I said softly.

  She closed her Kindle and looked up. The rash on her face was still vibrant today. “Charles,” she said, like she couldn’t believe I was here. Then she looked at my ma. “Dr. Wong, thank you for coming to see me, and for the tea eggs.” Her eyes darted around the room; the comfort from moments before seemed gone.