My Brilliant Life

by Ae-ran Kim

  Then Dad’s profile, on the right side of the screen. “I thought we should go get him something for lunch.”

  Pictures of me paraded by in slow motion. Me smiling, holding a bundle of cotton thread during my first birthday party. Wearing a giant diaper, looking back at the camera. Being lifted into the bath by my mom, my eyes squeezed shut. Everyday scenes that are in everyone’s albums. But the pictures soon changed. My body shrank rapidly, as if I were returning to the moment of my birth, and I was shriveling, growing old in a split second.

  “He’s aging four to ten times faster than the average person. It’s not just his physical appearance. His bones and organs are aging, too. But what’s hardest for Areum is probably…”

  Dr. Kim Sukjin! I perked up at the sight of my doctor. For some reason, I was amazed that she was on TV, and wanted to shout out that I knew her. Onscreen, I was sliding into an MRI machine.

  “… the emotional aspects.”

  Various exams were being done on me, while the voice-over said, “Progeria is a fatal, rare disease that makes children age prematurely. There are about one hundred and fifty reported cases worldwide, with very few cases in Korea. Areum has a high risk of heart attack and various complications. Recently he lost sight in one eye due to macular degeneration. The doctors urge hospitalization, but that is economically impossible for Areum’s family right now.”

  “What kind of thoughts did you have during your long years of treatment?”

  “I had the feeling that I was alone.”

  “Oh?”

  “Not like my parents left me by myself and I felt lonely. It’s just that when I’m sick I feel completely alone.”

  “Have you ever blamed God for this?”

  “Can I speak frankly?”

  “Of course.”

  “I’m not sure.”

  “About what?”

  “Whether a complete being can understand an incomplete one. I think it’s impossible. I haven’t prayed to God. Because I don’t think he would understand,” I added sheepishly, “especially since God probably doesn’t ever catch even a cold.”

  “The cause of progeria hasn’t been discovered yet,” intoned the narrator.

  The questions they’d asked were peppered throughout the story, revealing Seungchan’s care in stitching the interviews together to build context and rhythm.

  “Do you feel envious of other kids your age?”

  “I do. Most recently it was when I watched a singing program on TV, a competition for aspiring singers.”

  “And?”

  “They said more than half a million kids my age auditioned. I couldn’t believe there were so many people who wanted to become stars.”

  “Were you envious that they could realize their dreams?”

  “No, not at all. I watched the ones who didn’t make it. They would come out of the audition and burst into tears and run into their parents’ arms. Like they were little kids. They looked devastated, but I was so envious of their failure.”

  “Why?”

  “They’ll go on to live their lives after that. They’ll be rejected, disappointed, ashamed, then they’ll go on to try a bunch of other things.”

  “I suppose they will.”

  “That’s amazing. Because I … I won’t have the opportunity to fail at anything. I want to fail. I want to feel disappointed and sob out loud, just like them.”

  There were more clips of my parents, the doctors, and anecdotes from my childhood. My joke about living longer than anyone else made the cut, along with how it felt to age quickly. At the top of the screen was a phone number; donations were being collected via phone and online, and they said you could use credit card points. The show was nearing its end.

  My parents glanced at the clock, looking shell-shocked. They seemed confused, and perhaps a little disappointed, that they had been made to speak at such length, but had been reduced to a few sound bites. When the program returned to the scene at the very beginning, they focused again; they hadn’t been there when this was filmed.

  “What do you want to be when you grow up, Areum?”

  “I…” I paused for a long time before responding shyly, “I want to be the funniest kid in the world.”

  “What do you mean by that?”

  “There are lots of ways for a kid to make their parents happy, right?”

  “Right.”

  “You can be healthy. Get along with your siblings. Do well in school. Be athletic. Have a lot of friends. Get a great job. Get married and have a baby. There are so many options, right? I can’t do any of that. So I thought for a long time about what I could do. I can be the most entertaining kid in the world.”

  “Yeah?”

  “Yeah.” I smiled quietly for a while before the frame froze.

  The credits began to roll. Producer: Chae Seungchan; Writing: Park Narae … Narration, Photography, Sound. We stayed silent until the studio logo came onscreen at the very end.

  Suddenly, we heard someone banging impatiently on the front door.

  We all jumped.

  “Who is it?” Dad yelled, as the knocking continued.

  “Me!”

  “Who?”

  “Me, Jang from next door!”

  Dad looked at us, shrugged, and opened the door. Little Grandpa Jang rushed into the living room, panting. He looked stunned. “Areum! Did you see the program?”

  “Yes?”

  Little Grandpa Jang sat down, hard. “Really? You saw it?”

  Mom frowned. “What’s wrong?”

  He gripped his head in despair. “I wasn’t in it!”

  14

  Once hospitalized, I deteriorated rapidly, as if my body had been given permission to be sick now that we didn’t have to worry about costs. Thankfully I didn’t need to go to the ICU; I was in a room with two other people and received physical therapy and medications, as always. I didn’t bring much with me, just books, my laptop, and a few changes of clothes. My dad went to the public library and borrowed books for me when I needed more to read. The ophthalmologist advised me to look into the distance frequently and to avoid being on the computer for too long or reading too much, but he clearly didn’t know how dull life in the hospital could be. I secretly read even more than ever, hiding it from my parents. Soon, I might not be able to read anything, so I had to make up for it while I could.

  * * *

  From time to time, Dad asked, “Areum, what are you reading?”

  “Just an essay, Dad. This author had his second child at the age of thirty-eight. He counted on his fingers as he waited by the delivery room.”

  “What for?”

  “The moment the baby was born, he was thinking, I’ll have to make money for another twenty-five years until this baby graduates from college. I’ll have to work my tail off until my mid-sixties. That’s what he was thinking in the hospital corridor, all alone.”

  Dad didn’t speak for a while. For the first time ever, he asked, “Who wrote it?”

  * * *

  Another day, Mom asked, “Areum, what are you reading?”

  “A book of poetry, Mom,” I said, my fingers trembling. “This is this writer’s third book.”

  She craned to see the book’s cover.

  “You know, Mom, this tells the story about the world’s most terrifying person.”

  “Yeah? And who is it?”

  I smiled. “Do you want to know?”

  “Yeah. So who is it?”

  “Mom, according to this writer, the world’s most terrifying person is someone who might vanish forever.”

  Mom didn’t speak for a while. “Areum,” she said, her eyes sad.

  “Yes?”

  “Stop reading that book.”

  * * *

  Another time, a nurse asked, “Areum, what are you reading?”

  “Just a book. It’s kind of a mix between a memoir and an educational text.”

  She checked my IV deftly; she had probably done this a thousand times. “Aren’t you
r eyes tired?”

  “I’m okay. But do you want to hear about something?”

  “What?”

  “This author says that pimples are a way for young people to chase away potential partners until they build up their intellectual and physical qualifications to become parents.”

  The nurse showed some interest at my medical knowledge. “I guess that’s plausible.”

  “Did you have zits, too?”

  “Sure. They were the worst,” she said, recording something in my chart.

  “So did that help you chase away potential partners?”

  Her expression softened and she smiled. “If they did, I would have gone to medical school.”

  * * *

  More donations than we expected came through the program. We were able to afford my stay in the hospital and my mom was able to quit her restaurant job and focus on taking care of me. That was the biggest change the show brought to our lives. Personally, though, the meaningful thing that came from the show was meeting … her.

  The evening my episode aired, I spent the rest of the night on the show’s website. I was feeling uneasy, wondering how people would respond. A little part of me figured I would tell my parents about any interesting comment I came across. At the top of the homepage was a menu with “Watch,” “Preview,” “Community Comments,” and “Tell Us Your Story.” I clicked on “Community Comments” and found several posts. My hand shook a little on the mouse as I selected the most recent one, with the unremarkable title “Good program.” This could be our first official fan mail. Of course, I had been part of online groups and chatted with people, and I’d even been a popular member of one of the clubs, but nobody knew who I was, really. Nobody I chatted with would have imagined that the person they were having an awesome conversation with in the middle of the night was a boy with a rare disease, and of course I’d never revealed that about myself.

  But these people did. They’d written this, knowing that I was sick. That made me nervous. I held my breath.

  I enjoyed this week’s program, Areum: The Bravest Boy in the World.

  Even more nervous, I kept reading.

  What’s the music in the opening credits?

  What?

  I stared at the monitor, then went to the next message. Someone named Blue Sky had posted it and it was titled “Question.”

  I was touched by last month’s episode, Jeonghui, A Smiling Angel. I donated after the program but when I got my bill this month I saw that I was charged two thousand won. When I called in, I thought it was a thousand won. Is this an error? This is unacceptable. I demand an explanation. For the record I’m not writing because I’m angry about the extra thousand. It’s about the principle.

  I was speechless. The other messages were similar; all kinds of comments were posted on the message board. Someone complained about a prior show, asking why they were helping a foreigner, and another wrote in to say that a resident working at some hospital seemed like such a handsome, attractive guy. There was a harangue about how the viewer had discovered that the voice-over actor was an unmarried mother and that it was unbecoming of a public broadcasting station to hire such a woman. There was even a digression about how well the online forum was designed. Much later I found some messages of encouragement for my family, titled “Han Areum, keep your chin up!” and “I felt so sad” and “Areum is so lovable” and “I’d like to help.”

  I’m writing to tell Areum to not lose courage. He and his parents must have had such a hard time. I’ve received cancer treatments for the last five years so I think I understand a little what he must be feeling. I know there’s a lot you can’t even tell your own family, things you can’t say. Areum is so young but so brave. I’m sure he probably wants to scream and curse at the entire world, like me. Areum, if you feel like doing that, go ahead and do it. It’s exhausting to keep smiling sometimes. I don’t even know what I’m saying anymore, I was just so emotional when I began writing this. Stay strong. I’m rooting for you.

  Hi Areum, my name is Jihong and I’m twelve. I live in Ansan. Today, after the show, my parents said there’s a reason why people clap when a baby learns how to walk and when your kid enters elementary school and when he graduates. They said growing up is amazing and difficult at the same time. It must have been so hard for you, having to grow up faster than anyone else. Areum, I broke open my piggy bank to help you. It’s not a lot but instead of using it for your hospital bills, could you use it for something fun? That will make me happy.

  I’m a college student in Seoul. I’ve been thinking about why Areum’s words shook me to my core. I guess this isn’t very nice to say, but I didn’t realize someone like him would have thoughts and feelings. I feel ashamed of myself.

  I’m a mom of two kids. My life has changed a lot since I had kids, and my perspective on the world has changed, too. There are so many things you wouldn’t know if you never experienced it. When I had my first child in my thirties, I was afraid of giving birth. I was afraid my life would become ordinary the moment I became a parent, that I would be living a boring life. I thought being a mom meant I would no longer be special. But once I saw my firstborn, I was proud of myself. I wanted to brag about my baby to everyone, even to my exes with whom I had awful breakups. I’m sure Areum’s parents felt the same way when they unexpectedly became parents. You raised him so well. As Areum said, parents are happy when their child is good at school or athletic, but from a parent’s perspective there’s nothing more difficult than raising a child to be a good person. I can’t urge you to be brave, but I do want to let you know that I think you’ve done an amazing job.

  I was moved as I read these posts. I never liked the word “understanding,” but these kind words offered by strangers from all over made me choke up. We all clung to being understood, even while resisting it, knowing that it was ridiculous. What made us that way? Why did people try so hard to convey the emotion they felt? Why were some people willing to give a part of themselves in a world where nothing was free? As I scanned these posts, I felt slightly less alone. Finally, I clicked on a post titled “Amazing.”

  if it were me I would have killed myself. lol

  Her email arrived two days later, with the subject “Antifreeze.” At first I thought it was spam, but I opened it just in case. And there she was. It had been sent the night before, around midnight.

  Dear Areum,

  Hi, I’m Lee Seoha. I’m sixteen, the same as you. Like you, I’m also bald. I’ve been bald for a long time.

  I’m writing after seeing you on Hope for Our Neighbors. I got your email from the broadcasting station. I hope I’m not overstepping. At first they weren’t going to give it to me but I managed to convince them. I think they finally did because I’m also sick.

  I wanted to tell you something. On the show, you said you weren’t entirely old or entirely a kid and that’s what makes it hard, that the time you ingested too quickly is crumpled inside you.

  I laughed when you told the interviewer, I think I’ve lived longer than you. Even though we don’t have the same disease, I know a little bit about how one minute feels like an eternity. If it’s okay, I wanted to acknowledge all the time that exists inside you.

  My first thought was of Mount Halla. I guess Mount Paektu works too. Just any tall mountain. A long time ago, in geography class, I learned that those mountains are so tall that different flowers bloom at different elevations, plants that couldn’t ever live in the same time and place existing together. Four seasons are present at once on those mountains, with winter in summer and spring in the fall, not as a figure of speech, but for real. Everyone considers you prematurely aged, but I’ll just think of you as a mountain.

  Oh, and here’s a song for you. A gift.

  I wish you luck.

  At the end of the email was a file called “Antifreeze, The Black Skirts.” I clicked on it and a music player popped up, with an abstract image dancing along to the music.

  I held my breath in the short mome
nt before the song became a song, before music became music. This was my favorite part of listening to music.

  Upbeat drumming and keyboards. It wasn’t dreamlike, but the melody made you think of somewhere far away. Boom boom bip, boom boom bip. My heart pounded in time to the beat.

  The vocals were relaxed and warm, though the tune wasn’t. The song was about how you didn’t freeze even in a snowstorm, because you had each other. What struck me the most was how they danced as their way to fight despair, choosing beauty over icy uncertainty. A silence settled at the end of the song, a quiet that was qualitatively different from the pause before the song began. It was amazing how something you couldn’t touch or hold could move you, and how the heart recognized that and tried to find music that it resembled. I listened to the song a few more times. I liked it. Maybe I had decided to like the song as soon as I opened the email.

  Reading the email again carefully—Hi, I’m Lee Seoha. I’m sixteen, the same as you. I wanted to acknowledge all the time that exists inside you—her voice echoed inside me, as if I had really turned into a mountain. The same as you … the same as you … and spring … and spring …

  I had never received a message like that from a girl. Would it have been different if a boy had written me? Probably. I didn’t want to admit it, but it was true. And she seemed different from other girls. Not that I knew what teenage girls were like, but there was a special, familiar temporality in her words.

  What a sophisticated perspective she has, I thought. I knew why that was. She was sick herself. Someone had once written that all sick people are old people. What kind of disease did she have? If she was bald it must be serious. I read the email again, trying to find hidden meanings and allusions between the sentences and the spaces. I read it over and over, practically committing several phrases to memory.