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What the eye doctor didn’t see

The world I grew up in was riddled with dangers: snowballs, lollipops, drinking straws, metal clothes hangers, baseballs, tree branches, long-stem roses, popsicles, high-heel shoes, and the hardcover editions of books. Life was full of opportunities for blindness. My father saved up stories from his ophthalmology practice and transformed them into directives: Never rub your eyes. Always wear protective goggles. The threat here was “foreign bodies,” which, despite his explanations, I pictured as miniature men in ethnic costumes kicking as he plucked them from the whites of his patients’ eyes. And there were other rules: Don’t allow the dog to lick your face. Never let a parrot sit on your shoulder, I don’t care how well you think you know him. No jumping on the bed—look what happened to your brother.

Jon was almost two when he hit his eye on the corner of the wooden headboard and fell to the floor. It’s taken decades for me to learn the details: how my father carried Jon through the emergency room of the hospital where he worked, past the waiting room and nurses’ station. He set my screaming brother on a bed and pulled the yellow curtain around them. My father didn’t trust the resident on call; apparently didn’t trust anyone but himself to hold the pointy syringe, the threaded needle, and surgical scissors against the ripped skin under Jon’s eyebrow.

My mother helped hold my brother down. My father sobbed as he sewed the stitches, but his hand was steady and careful. He understood how important the face is to human interactions, how a scarred and disfigured eye could jeopardize his son’s future. The pink scar drawn underneath Jon’s left eyebrow is a faded testament to my father’s expert hands.

Now, 25 years later, I find myself pressed against the picture window on the seventh floor of Massachusetts Eye and Ear Infirmary. The Charles River shimmers, and for a weekday morning, a surprising number of sailboats glide in figure eights. It’s a beautiful day in mid-August, a bittersweet day when we remember that summer will soon be gone.

Ten adults crowd this hospital room, missing meetings and not returning phone calls or emails so that we can sit around this empty bed. We’re waiting for my two-year-old niece Joli to return from surgery to remove her right eye. The doctors are certain: it’s cancer. Retinoblastoma.

My mother sits in a plastic chair, counting the hours in rosaries. In the spiritual equivalent of slipping cash to the hostess of an exclusive restaurant, she begs her dead parents and siblings to whisper in God’s ear. Joli’s other grandparents, the preacher and his wife, pray softly, and an occasional “praise God” or “in Jesus’ name” rises to my ears. Joli’s mother, my sister Liza, reads the latest Harry Potter, and Joli’s father, Jorge, talks on the phone, telling and retelling the story for the hours we wait. We fear all the unknowns: how will Joli cope with only one eye? If they find cancer in both eyes, will she be blind? Has the cancer metastasized?

My brother Jon has just flown in from Maui. My other brother, Paul, a first-year medical student at Boston University, is skipping classes to sit with us. Alonso, my boyfriend of a decade, waits here, too. My sister Mari, who is due to give birth any week now, calls us constantly from Los Angeles for updates.

There’s one puzzling no-show: my father, the ophthalmologist. We act as if his absence proves the depth of his love. My father must love Joli more than any of us does, and that’s why he’s not here.

But I know the truth. My father isn’t here because he blames himself. If Joli dies because he waited too long before voicing his suspicions about the subtle, almost imperceptible changes to her eye that he alone among us could have interpreted . . . if Joli dies because my father didn’t say a word and the cancer spreads . . . I will blame him, too.

On the morning Joli was diagnosed, it took only seconds. The pediatric ophthalmologist just blinked into his ophthalmoscope before announcing his suspicion: retinoblastoma. It’s one of the few cancers that can be diagnosed upon visual examination. And just as quickly, my father, who was there chatting up his former colleague, spun around and left the room without saying a word. My father is the kind of man who can’t let anyone know he cries.

My father didn’t speak much for the rest of the day, nor did he leave the car to attend the flurry of appointments with specialists before my niece’s operation the next morning. I was alone with him when he said miserably, “We could lose her.”

“Not lose her,” I countered. “Just her eye. That’s the worst-case scenario.”

“Losing her eye,” my father said, “is the least of our worries.”

My father stared at his hands as he told me a story. While in training for his ophthalmology specialty more than 30 years ago at Philippine General Hospital, he had witnessed enough cases of retinoblastoma to fear it. Some of the parents he met had read the mysterious white glow from their toddlers’ eyes as a sign of special powers, an ability to divine the future or bring the family luck. “How stupid,” my father said. By the time the sick children arrived from their remote provinces to Manila, it was too late, and they soon died. In 1975, when my father arrived in the United States to study at the Tufts–New England Medical Center (now called Tufts Medical Center), he immersed himself in science and distanced himself from folklore.

Once Joli was diagnosed, Liza recalled seeing a strange reflection in her daughter’s right eye. Like the glow of a cat’s eye. But the conditions had to be just right, and Liza didn’t see it all the time, so it didn’t alarm her. When we looked back over the many photos of Joli, we noticed a handful from the previous four months that showed hints of the white spot in her eye—photos my father undoubtedly never saw. The spot is there while Joli blows out two birthday candles. It’s a little bigger while she’s sitting with my father watching television after a summer cookout. We’d been taking photos of the cancer for months.

In the photo from the night before the surgery to remove Joli’s eye, the tumor is plain as day. There is Joli, clutching a stuffed Tigger toy, her pupils still dilated from the exam. Where the flash should have produced the normal red-eye reflection, it has revealed something else. An opaque pearl, startling, beautiful, and deadly.

I didn’t know how much I needed Joli until she was a year old. That’s when she, Liza, and Jorge moved from New York to Boston, where I live. One day a week since then, Joli has been mine. I don’t have children of my own, and it’s fun to pretend. I leave my apartment before 7 a.m. so I can be the first to greet Joli when she awakes. I’m the one who performs the morning rituals of diaper change and warm milk bottle and snuggling. My name was one of her first words, and her parents taught her to add the Filipino word for aunt, Tita. As her vocabulary grew, I was Tee Grace, then Tee Tah Grace. And now she sings my name in a birdcall like the northern bobwhite, Tee Ta Grace.

My days with Joli have been some of the best of my life. We threw an entire box of cereal, a handful at a time, onto the living room floor and let her dog Gordie, the 170-pound Presa Canario, clean it up. We made snow by emptying a container of baby powder in her bedroom. We tossed pizza dough into the air and cracked eggs against the counter and spooned soil with ice cream scoops into seedling trays on the coffee table. After our day together, I feed and bathe her. I rock her on my belly and tell her a story, then continue retelling it, until Joli stops saying, Again, again, again.

Now, with Joli’s diagnosis, I feel robbed. I want to say to my father, “You taught me to be afraid of pens and lollipops and snowballs and rosebushes and every sharp, pointed object in the world when all this time, the danger was inside of us, in the very cells of the eye itself.”

When we tell the story of Joli’s cancer to new people, my father is the hero. It was he who first noticed that Joli’s right eye was slightly misaligned. During Easter holidays, I heard murmurs about strabismus, or lazy eye, and a month later my father began to share his suspicions regularly to any of us who would listen. At a Mother’s Day meal, my cousin Rod, who is also a physician, admitted that he thought Joli was going cross-eyed.

Despite all the talk, no one was alarmed. We didn’t want to consider that her misaligned eyes could threaten anything but her looks. Yet I wonder if silent alarms were firing in my father’s head—Misaligned eyes! These could be symptoms of a rare eye cancer! My oldest sister was married that Memorial Day weekend, and all through the festivities, I noticed my father placing one hand, then the other, in front of Joli’s eyes in what looked like a kind of game. Joli would swat his hand away in annoyance. “Leave her alone,” I said. “She doesn’t like that.”

After Joli’s diagnosis, my father, in a story he couldn’t stop telling, insisted that he was doing that annoying hand trick to check Joli’s visual field. “But she saw my hand,” he said. “She saw it.”

I understood what he needed. Forgiveness. Relief from culpability. “You couldn’t have known,” I said. And it’s true. Only an eye exam with an ophthalmoscope would have caught the gooey tumors early as they started to gather and grow. Still, I wish he had said, “I doubt it’s anything serious, but I’ve noticed Joli’s right eye is wandering to the side. It’s my professional recommendation that you take her to a doctor.” After all, he routinely refers his patients to other eye experts when he understands his limitations as a general eye doctor. “I have to send you to Boston,” he’ll say. “They can take care of you there.”

But with family members, fear and denial can get in the way. Perhaps he couldn’t process what he was seeing: the loosening of Joli’s focus as her eye drifted to the left. Perhaps he told himself it wasn’t possible that his granddaughter’s eye could fill with tumors, that her life could be threatened at the age of two. Who can blame him for wanting to deny his worst fear?

The irony is that my father, even though he is a doctor, doesn’t believe in going to the doctor. His medicine cabinet is full of prescriptions he’s written himself: antibiotics for sore throats and topical creams for his eczema (at least he thinks it’s eczema; he’s never been to a dermatologist to know for sure). He has health insurance and plenty of physician friends who would see him for free—that’s not the problem.

The problem is he understands far too well how disease waits for every body, and part of him still believes that not acknowledging there’s something wrong will make it go away.

My father is not unusual among his friends. They are cardiologists who smoke, psychiatrists and gynecologists who fall asleep in the middle of a mahjong and drinking binge. One colleague, a radiologist with two children under the age of six, was covered in bruises and so fatigued that she was crawling up the stairs. By the time she allowed doctors to confirm what she already knew, leukemia, she had three months to live.

Five months have passed since the question began to form in my father’s mind. The tumors have grown quickly, and in that time Joli’s eye has become blind. There’s no guarantee doctors could have saved that eye even if they had found the cancer early, before it had detached the retina. Nor is there a guarantee that removing the eye will save Joli. What if we’ve waited too long and the cancer cells have burst out seeds that have crawled along her optic nerve and metastasized to her brain? Her prognosis would be poor, a survival rate of less than 10 percent.

Moments before the surgery, Liza and Jorge took a family photo, the last one of Joli with her right eye. Joli wore a yellow gown, open in the back, and thick hospital socks with rough treads. Her dense curls were unbrushed. She was looking at a balloon and crying. When her parents left her on the operating table, they asked, still unable to accept the truth, “You’re sure it’s my kid that has cancer?”

In the days after the surgery, the doctors will perform scans and biopsies and spinal taps. They will mine bone marrow. Soon, we’ll learn they’ve found no sign of cancer in the other eye, and no obvious signs of spreading. Despite this good news, Joli will need chemotherapy. For easy access to her vascular system, they will embed a plastic port, like a piece of uncooked ziti, next to her left nipple. For the next six months, Joli’s baby-smooth skin will be bruised from needles and raw from bandage adhesive that stays stuck for days. Within a week of her first chemotherapy treatment, her Afro will fall onto her pillow as she sleeps. She will hold her curls against her chin, and say, “I’m Daddy.” All this joy and suffering will happen later.

For now, we wait in Joli’s hospital room and watch the light change. When the doctor returns her to us, Joli does not speak or cry. Liza lies in the hospital bed, and Joli settles underneath her mother’s breasts like an enraged squatter trying to move back inside the only home where she ever felt safe. If anyone tries to kiss or touch her, or if Liza moves, Joli shrieks like a wild animal. White bandages over her right eye protrude like a fist. We are afraid of what is and isn’t underneath.

As we wait for the anesthesia to wear off, we sit in this room. We look out the window or at our books or laptop screens so we don’t have to look at each other. We eat soup and drink coffee. We make excuses about why my father, the ophthalmologist, isn’t here for his granddaughter’s eye surgery. We understand that like all of us, he is doing the best he can.

A version of this essay appeared, under the title “Foreign Bodies,” in Silence Kills/Creative Nonfiction (Issue 33).

GRACE TALUSAN, J94, is a lecturer in English at Tufts. She was awarded an Artist Grant in Fiction from the Massachusetts Cultural Council and has published in literary journals and anthologies. See www.gracetalusan.com.

  © 2008 Tufts University Tufts Publications, 80 George St., Medford, MA 02155