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Between the Lines
by Leslie Hsu Oh
Under the Sun
Summer 2009

Notable Essay in Best American Essays


Leslie and Kyra
Photo by L. Stoddard, 2008

Each stroke - a strand of hair, a shadow around the eye - by itself was nothing, but together the lines formed an image of me, studying an open college textbook in my lap. The artist shaded in long black hair she had moments earlier tenderly tucked away in a French braid. She took care in detailing the Navajo storm pattern barrette clasping uneven ends. She penciled in a highlighter in my right hand. Her carefree writing adorned the curve of an elbow: "I pray to God that I will have many more chances to sketch you." And beneath the hard edge of the book cover, she continued:

To my sweet, smart

and darling daughter.

Thanks for coming to Japan

with me.

Love,

Mom

May 9, 1994

Maki Hospital

 

Rendered upon a lined notebook paper, one edge frayed with holes torn from a binder, the sketch was pressed between two sheets of glass framed in cherry wood. It sat upon my desk, luring me to the day my mother's pencil touched the page. I could still hear the rain, a gentle staccato on the window of a hospital room. Inside, a mother and daughter giggled uncontrollably. The daughter clung to the side of her bed, unable to catch her breath. The mother propped her arms behind her head. Her cheeks, the kind you want to pinch on babies, pinked as if she had just negotiated cliff-hugging trails on horseback.

"MaMa, I didn't think we were going to make it!"

"I know. The taxi driver never looked at the road once."

"He just kept watching the baseball game. I can't believe he had a T.V. on his dashboard. That's so dangerous."

"Were you surprised that the driver was on the right side of the car?"

"Yep," I answered while walking over to the bathroom. "Did you see how surprised he was when I tried to climb into the driver seat? Hey MaMa, you gotta check this out. The bathroom has one faucet for both the sink and the tub."

"Really?" MaMa tried to squeeze into a room that barely fit one person.

"Stop it, you don't fit. Wait for me to finish," I said, splashing water in her face.

MaMa didn't listen. She grabbed the faucet and used it to pull herself into the bathroom, shoving me into the tub. She slammed the door shut so we wouldn't fall out. We fought for control over the faucet. MaMa aimed for my eyes. I deflected the water between her boobs. She screamed as the cold water slid down her shirt and pants. Before she could retaliate, we heard a polite knock on the door.

We fumbled for the doorknob, the space so tight we could hardly disentangle our arms. After much embarrassed cackling, a wet mother and daughter spilled into the arms of a surprised Japanese nurse.

The nurse frowned, having never seen such ridiculous behavior in a place where patients arrived from all over the world to see the Japanese doctor who cured liver cancer caused by hepatitis B. She assisted MaMa back into bed and checked her vitals, as if to remind MaMa that she was in no condition for this foolishness. She placed a blood pressure cuff on MaMa's arm. Satisfied that everything had returned to its proper place, the nurse bowed gracefully and gestured towards two trays of food, steaming beside our beds. Although the room came equipped with a stove, the nurses delivered three meals a day: rice, sashimi, sushi, teriyaki chicken, miso soup.

Through our floor-to-ceiling windows, columns of smoke spiraled from stacks in the middle of green fields, miniature cars hurried along dirt roads scratched into patches of agriculture, soda machines splashed color on gray street corners, and bright flags with Japanese characters fluttered in the wind. We sat on the edge of our beds and poked around grains of rice in our bowl. We nibbled at fish, pink on the outside, red and chewy on the inside. Some things we dared each other to taste first.

"Hey, MaMa, is this a real flower?"

MaMa balanced an orchid between her chopsticks and shook it under her nose to see whether she could detect any fragrance.

I said, "It's on our food. I bet you can eat it."

"Really?" MaMa licked the plastic petal.

Clutching my tummy in delightful pain, I almost fell out of bed. Nurses peeked inside, either intrigued or upset with the noise we were making.

Neither of us looked sick. MaMa and I, acting as silly as kids, preserved like a scene in a shaken snow globe, oblivious to a swirling storm of unknowns.

 

***

In a bare patient room, my nine-month-old daughter in a pink jumpsuit and pigtails reassured me with kisses. The last time I was in this hospital, MaMa did not hold my hand when I was induced with pytocin. MaMa had died in my arms in a bed much like the one I was perched gingerly upon. She will never have the chance to show Kyra how to morph a sketch from two dimensions to three.

"So, how long have you had this breast lump?" the surgeon asked.

"I don't know. Maybe three years."

"I see that every year it has been growing?"

"When first diagnosed, it was about the size of a golf ball."

"Are you breastfeeding?"

"Yes. I was going to wait until I stopped breastfeeding before taking care of this, but my husband forced me to come."

The surgeon laughed and said, "From the biopsy, it looks like this is a hamartoma, which is a benign tumor. But we won't know for sure that it's benign. The growth concerns me. You should've had this removed years ago."

After Kyra was born, my husband said, "You're a hypocrite. You graduated from Harvard School of Public Health. We founded The Hepatitis B Initiative. We're both public health professionals." Daily, I advocated for others to get screened and vaccinated for hepatitis B. "Don't find out too late! Like my mom and brother," I would urge. My brother, Jon-Jon , was only seventeen years old when he was diagnosed with liver cancer caused by hepatitis B. He died a little over a year after his diagnosis. Losing him first, then my mom to the same disease in a span of three years, forced me into this life of preaching prevention. And yet, somehow the rules didn't apply to me, at least not until my husband said, "Do it for Kyra, do it for me."

"It's benign, though," I said to the surgeon.

"Well, biopsies only sample a very tiny piece of the tumor. Do you know if it got bigger since you've been breastfeeding?"

"Um. I don't know."

"Are you doing breast self exams?"

"No. I don't want to know." I felt certain that I would be diagnosed with cancer, too. That was the kind of luck my family had.

"It's always better to know. Okay, let me take a look and I'll give you my recommendation." During the exam, Kyra swung her arms as high as she could stretch and then slapped them on her pudgy legs. She interrupted the surgeon with trills of laughter.

I left the doctor's office with Kyra pressed against my chest. I buried my nose in lavender-scented baby-shampooed hair, grateful that she was there to soften what I ultimately knew would be the surgeon's verdict: excise the hamartoma.

 

***

A month after the surgeon's recommendation, I asked my husband, "Do you think MaMa or Jon-Jon wanted to know they had cancer?" I knew my benign breast lump could not possibly compare to a seventeen-year-old facing death or a mother watching her youngest child die, knowing she carried the same virus. And yet, the fear of confirming whether I had cancer or not made me wonder. When do we choose to be silent? And when does choosing silence hurt ourselves? I stalled with indecision about the surgery, searching through MaMa's sketches, words, and photographs for an answer.

I owned only a few of her sketches quickly rendered on scraps of paper, scattered among my files. I never looked closely at her portraits before, because she was so speedy with them. She often told us to "freeze" so she could capture an expression or moment. In a few seconds, she would produce an image, which she rarely showed us. After all, they were private, something for her to treasure.

On a torn, browning notebook page, I discovered a young Jon-Jon. His left arm strapped by hospital tape to a board, an I.V. trailing from his fingertips. A flowered hospital gown draped across his body. His eyes were closed, as if in deep meditation. He was a professional patient, at peace with being in and out of hospitals since his birth. He looked loved. He seemed brave. MaMa taught me the power of art, how it could safeguard, sustain, and mean something different to each beholder.

In journals, written during the time of Jon-Jon 's illness, MaMa did not mention "hepatitis B." The pages were scrawled with a mother's worried handwriting, offering minute details of what Jon-Jon ate that day or frustrations about a daughter not answering her dormitory phone.

When my husband was away on a business trip and Kyra curled up beside me, twisting a strand of my hair in her tiny fingers, I understood how lonely MaMa might have been.

MaMa wanted me close, even before Jon-Jon was diagnosed with cancer. I couldn't wait to leave home. "Let's make a compromise," MaMa said at the end of a series of arguments about which college I should attend. "If you go to UCLA, then you can stay in the dorms." Sealing my college acceptance form in an envelope, I ran down the stairs like a bird stretching her new wings, testing their limits, while inside MaMa threw herself onto her bed. UCLA was only an hour away, but it felt like her best friend was leaving.

A few months after I settled into the dorms, Jon-Jon phoned me in the middle of the night gasping from pain. My parents were out of town. He could barely speak between breaths with his tongue clamped to the roof of his mouth. "Don't tell. Mom. Dad. O-kay?"

But I did anyway. I was as determined as the surgeon who walked slowly toward my mother, father, and I with a cup of coffee in his hands and said, "Not good at all. The tumor is malignant. He has hepatocellular carcinoma. Liver cancer."

I don't recall when the doctor told MaMa that she had hepatitis B too. Did he parcel out the bad news or deliver Jon-Jon and MaMa's fate in one sitting? I only remember being told that nothing could be done to prevent MaMa from getting liver cancer, too. And I know that MaMa was silent about her fears.

Since her diagnosis and feelings about her own health were strangely absent from her journals and the book she wrote about Jon-Jon 's illness, I browsed through my own diaries. I wrote mostly about fights with MaMa, the boys that lived in my dormitory, and how I was falling in love with one of whom MaMa did not approve. Dried flowers and movie ticket stubs from romantic dates, even the paper cup that one boy used to wrap around a wound I received prowling around UCLA's half-built Griffin Hall in the middle of the night, interrupted the words, evoking memories from that confusing time in my life.

An entry on May 7, 1993 fascinated me:

My mother was diagnosed with liver cancer a week after Jon-Jon 's death. It didn't become reality to me until yesterday - the day they were planning to resect three quarters of her liver. When they saw that she had cirrhosis, they didn't perform the surgery. Mother kept all this a secret from her friends and family. Only today, when we realized that we are being pulled back into the very nightmare we thought we had escaped, did Mom finally decide it was okay to let other people know.

Her desire to keep her illness a secret somehow silenced me for more than a year after her diagnosis of hepatitis B and two months after her diagnosis of liver cancer. Did this mean that by not writing about hepatitis B, I too could ignore this unknown? Perhaps I shared her fear about making her illness a reality by recording it in print? Or did she do this on purpose so hepatitis B would not rule her life? By not writing about it was she robbing hepatitis B of its power? Or was she inadvertently perpetuating the silent nature of this disease? I was also shocked that for over ten years, I thought she was diagnosed with liver cancer one month after Jon-Jon 's death, not one week. "Which is true?" I asked my father and MaMa's sisters, obsessing for weeks about this discovery. In the end, I guess it really didn't matter.

 

***

What does matter is that MaMa's silence about hepatitis B is not uncommon. Private confessions are whispered in my ear every day.

A friend who volunteered for The Hepatitis B Initiative phoned me one afternoon. After hours of gossip, she said, "I'm going to tell you something that you can't tell anybody, not even your husband, okay?"

She then told me that she was just diagnosed with hepatitis B.

I was not surprised. At least, one third of the world's population has hepatitis B. Many people don't know they have it or don't want to know.

I told her not to worry. Nowadays, there were safe treatment options available. I made sure she promised me not to drink alcohol and to get vaccinated for hepatitis A. She wrote down the blood tests and ultrasounds she needed to get every six months.

Then, gently I urged, "Your family and friends should know. At least, your husband? Don't forget you can protect your child at birth from hepatitis B."

When she did not respond, I continued, "Look, I wish I could come over. I'll help you through this, okay?" She lived in the East Coast. I lived on the West Coast. "But at some point, please promise me you'll reconsider. Your friends and family can get screened and vaccinated for hepatitis B. The vaccine can protect them from hepatitis B and liver cancer."

I twisted the phone cord and bit my lip as the silence swallowed us.

Finally, she said, "But I don't want people to treat me differently. I don't want them to think I have AIDS or that I do drugs or have unsafe sex. Information is power. I don't want to be stigmatized."

I said, "Like MaMa and Jon-Jon, you were exposed to the virus through either a blood transfusion or from your mother during birth. It is not your fault. Hepatitis B is not AIDS. Yes, it can be passed in similar ways to AIDS, but that's not how you contracted hepatitis B." I did not say that keeping things secret causes toxicity, like betrayal, guilt, and sin. We become sick mentally, physically, emotionally, and spiritually. When we see that everyone has stigmas or secrets, we can all heal. I did not say these things, because I know people might treat my friend differently. Even though I explained to my grandmother that you can't get hepatitis B from sneezing, coughing, sharing food or dishes or eating utensils, holding hands or even a mother's breast milk, she refused to dip her chips in a salsa dish sitting in front of Jon-Jon at a Mexican restaurant. It was the last time she saw her grandson and my grandmother focused upon not sitting too close to him.

My friend did not seem to be listening. She continued as if she were talking to herself, "Besides, what if my family or friends find out they have hepatitis B too? I don't want them to worry about it, like me."

And so I repeated what I told her earlier, "Most people develop their own antibodies when exposed to hepatitis B. That means they fight off hepatitis B and their bodies protect them for life against the disease. But even if they are diagnosed with hepatitis B, they can get ALT and AFP blood tests every six months and an ultrasound once a year. If their virus is active, there are treatments available now that my mom and brother didn't benefit from." My friend had repeated similar words to other participants in The Hepatitis B Initiative that were diagnosed with hepatitis B. I taught her this language.

Still, I could imagine her shrugging. The words bouncing off her stiff shoulders. "Whatever, I still don't think anyone needs to know. Besides, I feel fine."

 

***

Physically, I felt fine too until the sharp stab of the I.V. needle, the icy creep of fluids into my veins, the naked feel of the thin cotton hospital gown, and four long hours waiting to be ushered down the hall to find out whether I had cancer.

MaMa felt fine too until we returned from Japan and she began chemotherapy treatments. She never lost her hair, but she lost her appetite, her dignity, her desire to live.

No wonder people didn't want to know. Wasn't it better to fool ourselves into thinking our bodies were fine? Many diseases like hepatitis B have no symptoms. You can have hepatitis B and not know it. Many participants of The Hepatitis B Initiative ask, "Isn't ignorance bliss?"

As a public health advocate, I know that eventually your body doesn't feel fine. Like Jon-Jon collapsing in pain, barely able to take a breath. But if it weren't for my husband and daughter, I probably would not have agreed to the surgery. I down Benadryl with wine and jam fries dripping with oil down my throat behind my husband's back. And ignore the warning labels on prescription bottles. Meanwhile, I ruin evenings with my friends who have hepatitis B by reminding them they shouldn't relax with a drink. Why do we choose silence for ourselves and not the people we love?

***

 

After a phone call from my surgeon reassuring me that the lump she removed was indeed benign and that I did not have cancer, I revisited the Maki Hospital sketch. This time, I flipped the frame around to gaze at an image of MaMa resting upon a pillow. Most of the pencil strokes were mine, concentrated upon MaMa's short hair, her eyebrows, a pair of glasses, her nose, the pouty lips characteristic of MaMa's lineage, and her eyes large, whirling with shadows. Mingled with my lines were MaMa's corrections: tightening around her nose which she always felt was too large, various shades ranging from light to dark that MaMa added to pop the eyes off the page. I had signed the sketch, like MaMa did when she finished her paintings, my first initial followed by my last name. Underneath, I wrote:

1:30pm

Maki Hospital

5/9/94

Then, in the empty space of her abdomen area enclosed only by the outlines of a shirt, I titled the sketch, "Mother's worried."

This line was written under the gaze of a mother who instructed me to study despite discovering that she was being sent home without treatment, who insightfully knew that I sketched her and asked if she could borrow my notebook so she could return the gesture. She probably wondered whether she would ever have a chance to see her daughter get married or have children. She may have asked herself whether she should give up.

Upon closer inspection of the cherry wood frame, I discovered that each sketch was drawn on a different sheet of lined paper. Although both were water-stained, the edge of MaMa's sketch had bits of my handwriting that must've bled through from another page. "Cancer" was the only word I could make out, marring my most treasured possession.

I ransacked my home, hunting for the notebook I used in Maki Hospital , where the writing had originated. Scrawled on several pages, I had gushed angry words against cancer. It was a foul-smelling, bloody, pus dripping monster I hacked with a sword. With every slice, cancer seemed to grow stronger. And yet, I did not fear it. I did not allow that fear to silence me. Something, I seem to have forgotten along the way.

 

Long ago, I had framed these two sketches rendered at Maki Hospital , not realizing the significance of what I preserved. An artist knowing this might be the last time she could express her feelings for someone she loved. A mother knowing that this might be the only way to communicate with her daughter when words could no longer be used. A code for breaking silence.

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