by Ae-ran Kim
I was subjected to test after test. X-rays, clinical assessments, a cardiac ultrasound, bone density measurements, eye exams, tests to gauge my grip, a urinalysis, an electrocardiogram, and much, much more. I usually met with the pediatrician, but I also saw the orthopedic surgeon, the thoracic surgeon, the neurosurgeon, and the oral surgeon. Sometimes I saw them all and other times I saw just a few of them to receive intensive testing. My disease made me age quicker than normal, but old age in and of itself couldn’t be treated. Old age was something we could never cure; if we could, the world would be free of death. All that was possible was inquiring about my symptoms and delaying the speed at which my organs deteriorated.
I was sixteen, but if I learned anything in my short life, it was that experiencing physical pain was a solitary endeavor. I couldn’t share it with anyone. I don’t really believe in the saying that the heart can be more deeply hurt than the body. At least you were alive if your heart was in pain.
* * *
I had spent most of my life coming to the realization that I had a body, the way you don’t ever think about your tongue until the moment you have a sore on it. I was conscious of all of my organs, in minute detail. Bones were not just bones to me. Lungs were not just lungs. Like the hundreds of words med students memorized as they pulled all-nighters, the words I knew had stuck to me only after I had suffered through them. It was exhausting to be conscious of the fact that I had skin, a heart, a liver, muscles. No matter how close your body is to your spirit, they need some time apart, just like all happy couples. I was envious of the healthy who didn’t realize they were healthy, and the young who didn’t realize they were young.
I had long since suppressed the hope that I could be cured, but I didn’t think that meant my life was over. We did what we could to lessen the pain. And that was why, today, Mom and I were sitting in a corner of the exam room expectantly.
“You have disciform macular degeneration.”
We exchanged a look. What was that? We got nervous when doctors used words we had never heard before.
“Here, in your right eye.” The doctor looked at the computer monitor and then at my chart. “You must get a lot of headaches.”
I rubbed my yellowed nails and said timidly, “Um, not really. Words were looking a little blurry recently, but I thought it was because I was on the computer too long.”
Mom interrupted me. “What is that, Doctor?”
“It’s a condition the elderly frequently have. Aging deposits occur on the retina and the cells degenerate.”
“Like glaucoma?”
“It’s similar, but glaucoma is caused by pressure. Many cases with this form of macular degeneration are caused by deposits. If it’s a wet degeneration, we can block it somewhat using lasers. But the dry kind is difficult to treat.”
“And what does Areum have?”
The doctor paused. “Dry.”
We were silent.
Like always, I tried to figure out what the doctor wasn’t saying. But this time, I wanted to hear what he thought. “So what’s going to happen to my eye?”
The doctor glanced at my mom. I looked at her, too. She hesitated before nodding.
“Your right eye will quickly get worse. Things will get foggy. You might feel dizzy or nauseated. The left eye is unstable, too, so you need to take antioxidants and avoid UV rays when you step outside. That’s the best we can do for now.”
Mom was quiet. The one question she couldn’t bear to ask was probably circling her mind. I was afraid, too. I could deal with my liver deteriorating and my stomach aching, but going blind? That terrified me. I couldn’t breathe. God was about to deal me true loneliness. It was as though I’d spent my whole life in prison, and now I was being sent to solitary as a reward for good behavior.
“But my left eye is still okay?”
“Well, we’ll keep monitoring it.”
I couldn’t tell if that meant it was fine or if it could get better or if it wouldn’t. I just sat there, blinking, for a long time.
* * *
The thoracic surgeon had nothing positive to say, either. Neither did the orthopedist or the oral surgeon. All we discovered that day was how you never get used to hearing bad news. My longtime pediatrician estimated my physical age to be around eighty, which meant that outpatient treatment was no longer possible. The thoracic surgeon sounded frustrated. “Do you know what condition his heart is in? We have to admit him right away!” He pointed out that someone could live without legs or eyes but not without a heart. He said I held a time bomb in my chest, that my heart could give out at any minute. Everything he said was harsh and terrifying, which made sense to me, since he looked like a pirate, with his thick beard. The internist told me that my medications had damaged my esophagus and stomach. The orthopedist said I’d shrunk two centimeters from my regular height of 130 centimeters and that my bone density had diminished. Mom looked beside herself with worry. But she couldn’t bring herself to say, “Let’s get him admitted right away.” After all, we were already in an enormous amount of debt.
I pulled on Mom’s sleeve as we left the hospital. “Mom.”
“Yeah?”
“People are looking at us.”
“Probably because I’m so pretty,” Mom replied confidently, a haughty smile on her sun-spotted face. Her foundation cracked along her crow’s-feet; her face was as parched as the bottom of a dry rice paddy. Mom grasped my small hand with her labor-hardened one and walked out proudly, as if announcing, “What’s it to you? I had a child at age sixteen!”
Mom never hurried when she was with me, no matter where she was. I’m sure there were times when she wanted to avoid people’s gazes, but she always walked in her naturally leisurely gait whether we were in the subway or in the market. In fact, I was the one who tried to rush her along, tugging at her skirt, trying to minimize the stares she had to deal with. Today, too, I bugged her to hurry up and leave, saying I was starved. Maybe I was being too over-the-top, because she stopped and bent down, looking straight into my face. “Areum.”
“Yes?”
“How old were you when you got sick?”
“Two. You’re the one who would know.”
“So how long have you been sick?”
“Um, fourteen years.”
“Right. Fourteen years.”
I waited for her to continue.
“You’ve been so brave. This whole time. Even now, you’re going through test after test, and you’re not giving up. Other people get bent out of shape when their glands are a little swollen. Us? We’ve been doing this every single day, for fourteen years. We’ve been awesome. So…”
“Yes?”
Mom lowered her voice and said gently, “So we can take our sweet time.”
8
I left the house to go to the corner store. Even when she wasn’t busy, my mom had always sent me on small errands. I headed over, rubbing my exhausted arms and legs, and waited in front of the metal sliding door for the hairy owner to notice me. He was engrossed in a TV show, a daily drama about the lives of vengeful stepbrothers that everyone was talking about these days. He sniffled and wiped his nose with the back of his hand, then turned toward me. Startled, he stood up. “Oh! Hey. What would you like?”
“A carton of milk and some bean sprouts, please.”
He handed over the bean sprouts without looking at me, and I, too, kept my eyes averted, playing with a dust-covered can of food, as if marveling at this amazing product.
On my way home I spotted Little Grandpa Jang in front of his house, next to a chair he must have dragged over from somewhere. Instead of sitting on it he was squatting on the ground, enjoying the early-summer breeze.
“Hey! Long time no see,” Little Grandpa Jang greeted me.
“It’s good to see you,” I said, bowing slightly.
“Did you go to the hospital?”
“Yes, I got back earlier.”
“And what did those doctor bastards say?”
I
didn’t know what to tell him. “They said I was going to live to a very old age, until I go senile!”
Grandpa snickered. “You’ve got yourself excellent doctors!”
* * *
My dad finished his bowl of rice and helped himself to another. He gulped down his bean sprout soup; he must have been famished. I watched him, as pleased with his hearty appetite as though I were his grandfather. “Dad?”
“Yeah?”
“I bought those bean sprouts myself. So please have as much as you want.”
“Mm,” Dad said, and turned toward the TV. We were watching a variety show. He laughed with his mouth open, spraying rice all over. He seemed not to realize what I had gone through that day at the hospital.
* * *
After dinner I went straight to my room, feeling unsettled by the scary, ominous things that all the doctors had told me earlier. I turned on my laptop and logged in, then opened the document I had started several months ago and had been working on until last night. I was going to read it carefully from the very beginning and figure out what to write next. Reading in one sitting what I’d been pecking at for months smoothed the transitions and made the sentences flow more naturally. I breathed in deeply and straightened my shoulders. I began to scan the first paragraph with a critical eye, as if my purpose in life was to detect flaws in a piece of writing.
When the wind picks up, the flash cards inside me create a small tornado. On them are written words, flattened and shriveled like fish dried for a long time by the sea wind. I trace the names of objects, names I pronounced for the first time when I was young. This is snow, that is night, over there is a tree, beneath my feet is ground. You are you. I learned about the things around me first from their sounds and then by copying the letters over and over again. Sometimes, even now, I’m surprised I know the names of such things.
Should I change “flattened and shriveled” to “with reduced surface area”? No, a few paragraphs later I used “surface area.” The meaning of a word is important but so is the cadence. The words need to match the breathing of the reader and enliven the rhythm. What is better—letters? Words? Characters? They all mean slightly different things … but I think “letters” makes the most sense to use with the word “copying.” I worried over this exact same phrase last time, so I should keep going. Otherwise I wouldn’t be able to finish before my next birthday. Okay. Next. What’s a better phrase than “sometimes”? Occasionally? From time to time? Once in a while?
The humid night air felt sweltering to me. I smelled something fishy wafting through the open window; maybe the trash bags sitting outside on the street. It was summer, the season of decay, when everything grew rapidly and rotted quickly. I didn’t have that much body hair, so when the temperature rose slightly I sweated copiously, looking like I had been out in the rain. I polished the next sentence, then the next paragraph. I’d done this yesterday and the day before, but incredibly—and distressingly—every time I discovered new flaws. And so I couldn’t stop editing.
“Mira, I—” he began, launching into how much of a loser he was, how he could never be a good father, how he had no money, how he was afraid of disappointing people, and how, now that he was thinking about it, there were people in his family tree who might have had cancer. He rambled on incoherently.
Should I change “might have had cancer” to “collaborated with the Japanese”? But that wasn’t true. Then again, who cares if it isn’t scrupulously factual? But it should still be primarily based on fact, shouldn’t it? So that when they read this, they’ll know it’s their story. And suggesting that my dad’s ancestors were betraying their country only meant that I was tarnishing my own history. I didn’t want it to seem as though I come from an undignified family. And anyway, what would my dad say if he read this? Would he mind that I was making him out to be kind of dumb? Maybe it’s okay, since I like having a funny dad more than a cool dad.
I took off my glasses and rubbed my bleary eyes. Macular degeneration. That was what the doctor had said. I covered one eye with my hand and looked at the manuscript, first the left then the right, then back to the left. My chest ached, but I couldn’t tell if it was sorrow or my bad heart. I swallowed hard and concentrated. Regardless of why, the fact remained that I didn’t have enough time, and I had to hurry. I had written about my mom and dad meeting and having me, and now I had to re-create the time we had before I got sick. The two short, sweet years before we left our hometown. I couldn’t just write that time as if it were perfectly beautiful. I couldn’t articulate why but that didn’t seem right.
My plan was this: write the story of my parents from the very beginning and give this to them on my seventeenth birthday. Instead of awards or a college diploma, I would gift them a story. They would be shocked to discover my rich vocabulary and how elegantly my sentences flowed. Especially because I was the child and they were the parents. I still didn’t know where the story would go or if I would complete it in time. This would be my priority. I put my glasses back on and went over the part I’d completed last night.
That winter, my dad went into debt and ended up having to close his store. He didn’t have a business mind to begin with, and it was a challenge to operate a store dealing exclusively in an expensive brand, when they were relying on the disposable income of country folks during a widespread recession. Around the same time, my grandfather suffered a stroke. He had always had high blood pressure, but people whispered that his son-in-law had caused it by driving the business into the ground. My dad tried his best to save the store, even if his best was sending gear to his high school friends and assuring them that they could pay him later, or calling underclassmen from his middle school days, winding the telephone cord around his fingers, and coercing them into buying things. “Hey, so when I saw you at the arcade it looked like you were wearing Adidas?”
The underclassman on the phone would become flustered. “What? Oh, no, no. They’re all just knockoffs.”
“I think they were real.”
“No, I swear. They’re not real.”
After the store closed, everyone in the family wore Nike head to toe. It was as if the house had instantly turned into the Korea National Training Center, or we were involved in organized crime. Even my bedridden grandfather had to wear athletic clothes with a little swoosh on one side of his chest until he died. And even though everything was genuine Nike, they somehow all looked like knockoffs when my family wore them.
Though he had treated her with contempt throughout their marriage, my grandmother cared for my grandfather as he lay alone in his room. He couldn’t move and could barely speak. The neighbors who had borrowed money from him without IOUs were relieved. My ill-tempered, stubborn grandfather likely wanted to scold and nag his son-in-law, but all he could voice was a desperate and inarticulate grunt. The only other person who made sounds like that in our extended family was me—a baby. Still, his gaze remained sharp and vivid, and emitted murderous rage whenever he spotted my dad, who crept around, avoiding that room.
I grew warm sitting in front of my laptop for a long time. A rivulet of sweat was trickling down my chest. It was already past ten, so I got up for some water and to hit the bathroom before going to bed. I tiptoed across the dark living room so I wouldn’t wake my parents, but I saw that their light was on, their door cracked open to let some air in.
I heard their murmurs.
“What about your other brother?” my dad asked.
“He says he can’t. I couldn’t keep asking. Especially since we borrowed money from him five years ago.”
I paused in the kitchen, a glass of cold water in my hand.
“What about you?” asked my mom. “Did you call around?”
“Everyone’s stopped picking up.”
They were silent for a long time.
“And the security deposit is all gone, too. I don’t know.”
Money. Again. There was nothing I could do to help.
“Daesu, should we just call them
? I know it’s crazy.”
“Are you kidding? Your brother almost died. They went to Sanghyeok’s school to threaten him and even put staples in the dog’s ears as a warning.”
“Maybe we could just talk to them and see.”
“You don’t mess around with people like them.”
“I know,” my mom agreed. “But we don’t have many options.”
They talked for a long time, but I couldn’t hear what they were saying, though it was clearly about me. A while later, I heard her more clearly. “Daesu.”
“Hm?”
My mom didn’t continue.
“What?”
“You know…”
My dad waited.
“Never mind.”
“What?” he asked. “What is it?”
She hesitated. “Should we call her?”
“Who?”
“Sumi?”
My dad answered sternly, in a voice I’d heard only a few times in my life. “No.”
“If I’m the one who asks…”
“No. Stop it.”
“Then what do we do?”
“We agreed we wouldn’t. We said no. Twice. There’s no guarantee it could happen at this point. I don’t think it’s good for Areum to do something like that.”
I stood there, frozen. The glass was slippery in my hand.
“Are you sure it’s Areum you’re worried about? Not yourself?”
I swallowed. I sensed tension between them.
“Nothing’s free in this world,” she continued. “Forget about the rest. We’re going to have a hard time even putting food on the table for him.”