Often, as an ophthalmologist, my father has to deliver bad news. He tells people what’s wrong with their eyes and hands them some words to hold onto: Astigmatism, cataracts, glaucoma, macular degeneration. After thirty years of practicing medicine, he expects his patients will receive the most difficult news with resistance and denial. The truth is painful: Our bodies will let us down; our eyes will disappoint us.
I was there, photocopying insurance cards in his medical clinic, when he told an elderly woman that she was legally blind. According to the National Association for the Visually Handicapped, legal blindness is defined as those “who test 20/200 or less in the better eye after the best correction, or have a field defect in which the widest diameter of the visual field is no greater than 20 degrees.”
The blind woman was shocked. “But I can see fine,” she insisted. She held her daughter’s elbow, sobbing, as they trudged down the hallway to the waiting room. My father signed some official papers attesting to her blindness, as she was now entitled to certain government programs. The woman couldn’t see any less than when she had walked into my father’s office. In fact, the woman had probably been blind for quite a while before my father’s words confirmed her suspicions.
Most recently, my father told me about the man who burst into tears when told that his child would need glasses.
“But all the kids at school will make fun of him,” the man said. “Maybe we can wait until he’s a little older and bigger.”
With a calm delivery and no judgment in his voice, my father answered, “Your child’s vision is blurry. He can’t see the board at school. He can’t see a car coming when he crosses the street.”
But the man who is the ophthalmologist, the one who always acts in his patients’ best interest, is not entirely the same man who is my father.
Love obstructed my father’s vision. Like the blind woman who didn’t want to admit she was blind, in a moment when my father inhabited multiple identities at once, as an eye doctor and a grandfather, he denied the truth. His fear struck him mute.
August 18, 2005, finds me pressed against the picture window on the seventh floor at Massachusetts Eye and Ear. The Charles River shimmers and for a weekday morning, there are a surprising number of sailboats gliding figure eights. It’s a beautiful day at the end of the summer. The kind of day that reminds us we must hold onto summer before it’s gone, before the autumn forces us inside, to retreat to the warmth and loneliness of our televisions.
Ten adults crowd this hospital room, missing meetings and not returning phone calls and emails so that we can sit around this empty bed. We’re waiting for my two-year-old niece Joli to return from emergency surgery to remove her right eye. An enucleation. The doctors are certain: It’s cancer. Retinoblastoma. The malignant kind. The bad kind. The kind that can kill you.
My mother sits in a plastic chair, counting the hours in rosaries, fingering each bead with a Hail Mary or Our Father, around and around. In the spiritual equivalent of slipping cash to the hostess of an exclusive restaurant, my mother prays to her dead parents and siblings, begging them to whisper in God’s ear and intercede on her behalf. 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.
I notice Jorge’s wearing the Superman T-shirt he wore on the day Joli was born, the one inked with Joli’s newborn feet. It used to hang inside a box frame on the wall in his study, and I wonder about his decision to wear it. I see his loneliness and despair as he unhooks the frame from the wall, unpins the shirt from the frame, and pulls it over his head. These small actions are all he can do to create some luck.
As soon as he heard the news, my brother Jon took a flight from Maui, traveling across the Pacific then the continent. My other brother, Paul, a first year medical student at Boston University, skips his 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.
But there’s a noticeable and puzzling absence: my father, the ophthalmologist, and we act as if his absence proves the depth of his love for his granddaughter. My father must love Joli more than any of us, and that’s why he’s not here.
But I know the truth of why my father isn’t here: He blames himself. If Joli dies because my father was silent, waiting too long before voicing his suspicions about the subtle, almost imperceptible changes to her eye that he, as an eye surgeon himself, was the only one of us in a position to interpret—if Joli dies because my father didn’t say a word and the cancer finds the opportunity to burst from her eye and eat her brain and spinal cord—I will blame him, too.
Reach back twelve hours, to the evening of August 17. On the 17th of every month since Joli’s birth, my sister Liza has posed Joli with a stuffed Tigger animal and posted these photos to her baby blog. The baby blog meticulously documents ‘firsts’ in Joli’s life, which considering she’s just turned two, is almost everything. But on this day, the same day Joli was diagnosed with cancer, instead of merely marking her growth, the Tigger photo showed Joli’s tumor. Joli’s eyes were still dilated from her eye exam, and in the flash photography, the tumor in her right eye was obvious, unmistakable. Where normal red eye reflex should have occurred, Joli’s right eye revealed an opaque pearl.
In that night after first hearing of Joli’s diagnosis of retinoblastoma, I learned of grandmother Pam Bergsma. Like many proud and enthusiastic grandparents, Bergsma took dozens of photographs of her grandson, Joey. Some photos were marred by red eye, which occurs when the red blood vessels in the retina reflect light, while others showed a cloudy white spot, similar in appearance to a cataract.
On her website, Bergsma said, “I was taking pictures of the tumor reflecting the light and did not know it. These pictures would have saved his vision and his life.”
Since her grandson Joey died from retinoblastoma at age three in December 2000, Bergsma’s mission has been to educate and alert people about what that mysterious white spot in a child’s photo might signal, and to advocate for policy changes that include early screening for ocular diseases as part of routine well-baby exams. In the years since Joey’s death, Bergsma has received many letters from people who say their child’s life was saved because of one of her posters. Bergsma conducts regular seminars for healthcare professionals, and says nurses come by the hundreds, yet pediatricians, who have the tools and the authority to conduct the eye exams, rarely attend.
Despite her hard work, only in 2007 was Bergsma successful in filing The Infant Eye Care Bill in the state of Florida. “Joey’s Bill” requires three eye exams as part of routine well-baby visits. In an email, Bergsma tells me, “I have been begging for this simple exam for almost 6 years. This should not have happened to your niece. She should have her eye, her sight and her precious life should never have been jeopardized.” The routine ‘enhanced’ eye exams Bergsma calls for add only ten seconds of time to the regular exam and cost pennies in eye dilation drops.
In fact, on the morning Joli was diagnosed, it took only seconds. The pediatric ophthalmologist just blinked into his ophthalmoscope before announcing to the shock of everyone, “Tumors. Looks like retinoblastoma.” And just as quickly, my father, who was in the exam room 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 knows he cries. The team wanted to remove the eye immediately, but they weren’t able to schedule surgery until first thing the next day.
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 in the car 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.”
While in training for his ophthalmology specialty thirty years ago at Philippines General Hospital, my father had witnessed enough cases of Rb to fear it. Some of the parents he met had read the mysterious white glow from their toddlers’ eyes as a sign that their child was special, embodied with powers to divine the future or bring the family luck.
“Stupid,” my father says. He watched their children die.
Once Joli was diagnosed, my sister Liza recalled moments in the past months where she saw a strange reflection from the night light in Joli’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.
In 1869, only 5% of children diagnosed with retinoblastoma survived. The good news is that Joli was born in this century and in a developed country, where 97% of children survive Rb, most with some visual impairment. If Joli had been born in rural Philippines or anywhere that medical care was out of reach, her survival rate would drop to 13%. At least one person if not dozens loved those children whether they were poor or not, and I think about all that pain, all those black holes ripped into the center of those families’ lives.
Over a retinoblastoma listserv, I meet an adult survivor of Rb named Abby White who founded the International Retinoblastoma Daisy Fund, an organization whose mission is to help children with Rb connect with care. Part of her work includes supporting research with an international team of advocates, scientists, and physicians. White helped develop the World Rb Registry and in an email writes, “According to tumor registry data and calculations for those countries without reliable registries, based on birth rate, child mortality, and known prevalence rates for Rb, an estimated 9000 children develop Rb each year. So while about 5000 children are diagnosed with Rb per year, this figure doesn’t include those children without access to healthcare who aren’t counted. According to our estimates, roughly 4000 children die of Rb without ever being correctly diagnosed or documented.”
White was particularly moved when she heard about a girl from Botswana named Gorata Poonyane, Rati for short. Rati’s parents were concerned about her eye when she was only four months old. White writes, “Although doctors suspected eye cancer at the time, delays in referral meant she was not seen by a pediatric ophthalmologist for another four months.” Like Joli, Rati had her eye removed.
But Rati wasn’t able to have chemotherapy, the treatment her physicians recommended and after 19 months, the cancer returned, bulging out from her eye socket. White learned of Rati’s plight and arranged funding and treatment for her in Toronto. She received first-rate treatment, which included an autologious stem cell treatment, and even went into remission for a year, but while she was in treatment, suddenly the cancer returned. Five months after her fourth birthday, after a trip to Disney World care of the Make a Wish Foundation, Rati died.
I want to ask her doctors in Africa, “How could you be so negligent with her care?” But I realize the question is larger than those few people, who work within a system with limited resources. My question implicates all of us. Why such different outcomes when Joli’s cancer was diagnosed in the final stage and Rati’s cancer was discovered in the first few months of her life? But there’s a marked silence.
As the first grandchild in our family, Joli was the most photographed child in our family’s history. That night after hearing about Joli’s diagnosis, my father studied hundreds of photos of her. “I didn’t see it,” my father said. “How could I not see it?”
Hindsight, right? In a handful of photos from the past four months, there were hints of the white spot in her eye, slight irregularities. Then over the summer, there it was while Joli blew out two birthday candles; while she sat with my father watching television after a summer cookout; while she posed indoors next to Clifford the Big Red Dog on an excursion to Boston’s Children’s Museum.
But Pam Bergsma is right. Clues are not enough. An eye exam in a darkened room with an ophthalmoscope as part of Joli’s routine checkups would have caught the gooey tumors as they started to gather and grow. Instead, for months, the cancer cells on her retina grew, until there were so many cancer cells that they detached her retina, blinding her in that eye, and none of us knew. And we’d been taking photos of the cancer for months. One eye gone.
The doctors explain, Humans adapt. Children are especially good at adapting.
We didn’t know how much we needed Joli until she came into our lives. When Joli was a year old, my sister Liza and my brother-in-law Jorge moved in with my parents in order to save money for a house. My parents were delighted. For almost a decade after their five children had left the nest, their house had been empty. Even Sashi, our family dog of seventeen years, had died and given my parents one less thing to argue about. There were rooms, full of our old clothes, that my parents didn’t even go into anymore. The first time I visited my parents’ house after Joli moved in, I was walking up the green carpeted stairs and found one fuzzy pink sock, then a plush rattle. I heard laughter. Effusive. Explosive. Joyous. It had been so long.
Joli performs daily miracles that we can’t live without: She’s thrown open the metal bulkhead door in the cellar where my father hoards his love. She shines herself at us and says, “I love you.”
During that first year at my parents’ house, one day a week Joli was mine. I don’t have children of my own and thought it would be fun to pretend. I would leave my apartment before 7AM so I could be the first person to greet Joli when she awoke. So it was me who performed 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 grows, I was Tee Grace, then Tee Tah Grace; and then she sang my name into a birdcall like the northern bobwhite, Tee Ta Grace.
We attended a Mommy and Me-type music class together, and I pretended to be her Mommy. The first time I brought her there she was so anxious that she vomited. The next couple classes she sat on my lap and held my arms around her like a scarf as she watched the other children dance and sing. Then one day, she jumped out of my lap as soon as Jane began to play the guitar and before I knew it, Joli was leading the toddler mosh pit.
My day a week that year with Joli provided some of the best times of my life. We threw handfuls of an entire box of cereal onto the living room floor and let her dog Gordie, the 170-pound presa canaria, clean it up. We simulated 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’d feed her then bathe her. I’d rock her on my belly and tell her a story, then continue retelling it, until Joli stopped saying, Again, again, again.
As the daughter of an ophthalmologist, I was constantly aware of my eyes. The world I knew was riddled with dangers to the eye. My father prohibited us from throwing snowballs or eating lollipops or filling out crossword puzzles in the car or letting the dog lick our face. One of his teeth might pierce your eye.
I learned to respect the raw power of drinking straws, pencils, metal clothes hangers, baseballs, pencils, and tree branches to take out an eye. When I started working for my father at age eight, earning a few pennies for each medical chart I completed by pasting in multicolored chart numbers, he told me about foreign bodies. “Foreign bodies–dust, metal shavings, wood chips,” he explained, “prevent people from seeing. Sometimes they make your eye infected. Sometimes they can make you blind.” But at eight, I imagined miniature men in ethnic costumes kicking as my father plucked them from the whites of his patients’ eyes.
My father saved up stories from the hospital and transformed them into directives: Never let a parrot sit on your shoulder, I don’t care how well you think you know him. One of his patients liked to feed her parrot almonds that she balanced on her lips. One time the parrot mistook her eye for an almond.
Don’t carry pencils, sharpened end up, in your shirt pocket. Watch out for corners on bookshelves and tabletops, better yet only buy furniture with rounded edges. Avoid long stem roses, popsicles, high heel shoes, and the hardcover edition of books. No jumping on the bed, look what happened to your brother.
My brother Jon was almost two when he fell from the bed, hitting his eye on the corner of the wooden headboard and falling 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 he worked at, past the waiting room and nurses’ station. He sat 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 sharp points of the syringe, the threaded needle, and surgical scissors close to Jon’s eye. 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 impact his son’s future. The pink scar drawn underneath Jon’s left eyebrow is a faded testament to close calls and my father’s expert hands.
But now, with Joli’s diagnosis, I feel robbed. I want to tell my father, “You taught me to be afraid of pens and lollipops and snowballs and rosebushes and everything else in the world when all this time the danger was inside of us, close to home.”
When we tell the story of Joli’s cancer to new people, my father, the ophthalmologist, 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 she might be imperfect; we didn’t think her misaligned eyes could threaten anything but her looks. Silent alarms were firing in my father’s head—Misaligned eyes! These could be symptoms of a rare eye cancer!—but he wasn’t able to voice his fears. The malignant cells are constantly dividing.
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. He would sneak his hand around from behind and try to cover Joli’s eye, but she was a toddler. She would get annoyed and swat it away.
“Leave her alone,” I said. “She doesn’t like that.”
Months later, after Joli’s cancer was diagnosed, my father, in a story he can’t stop telling, a story that implicates him again and again, Why didn’t I know?, tells me that he was doing that annoying hand trick to check Joli’s visual field. “But she saw my hand,” my father said. “She saw it.”
I understand what he needs. Forgiveness, relief from culpability. “You couldn’t have known,” I said. And it’s true. Without a proper exam with the right instruments, he couldn’t have. But I wish he had been able to speak up about his concerns. 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.”
But he wouldn’t have ever said that. My father, the ophthalmologist, sends his patients to other eye experts when he understands his limitations as a general eye doctor. “I have to send you to Boston,” my father says to his patients. “They can take care of you there.”
The irony is that my father, although he is doctor, doesn’t believe in going to the doctor. His medicine cabinet is full of prescriptions he’s written for himself—antibiotics for sore throats and topical creams for his eczema. (At least, I think it’s eczema; he’s never been to a dermatologist to know for sure.) He has health insurance, and plenty of his physician friends 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 that there’s something wrong will make it go away.
My father’s not unusual among his friends, who are cardiologists who smoke and drink; psychiatrists and gynecologists who fall asleep in the middle of a weekend mahjong and drinking binge. They believe their status and training as doctors makes them unsusceptible to the body’s limits. One colleague, who had two children under the age of six, was covered in bruises and so fatigued that she was crawling up the stairs. The doctors confirmed what she already knew, leukemia, and she was dead in three months.
By the time another friend, a psychiatrist, was diagnosed with lung cancer the only option left was palliative care, a pain free dream he slipped into for a several weeks, and then he was gone. Probably the outcome would have been the same for his friends; maybe early diagnosis wouldn’t have bought them more time. But that isn’t what upsets me. My doctor father neglects his body. He’s taught me to feel this way about my body and I have habits of punishing it that I’ve had to work very hard to undo: smoking, over and under eating, over and under exercising, sitting so still my legs fall asleep, holding my urine until I’m in pain.
Come June 2005, all five of my brothers and sisters, their significant others, my parents, and anyone else in my niece’s life weighed in with their opinions: Does she or doesn’t she have a lazy eye?
“Call it amblyopia,” I said. “‘Lazy’ is so judgmental.”
None of us wanted to consider that my niece wasn’t perfect, that there may have been something about her appearance that could turn people off. Many times, we’ve poked fun at those with misaligned eyes: the popcorn vendor at the cinema, the clerks at the town library, the odd colleague with poor social skills. We laughed, “Which eye do we look at when we’re talking to him?” Children are so cruel; adults, even crueler.
In early July, my friend revealed that she had surgery as a toddler to correct her wandering eye. Now her eyes are perfectly aligned, and this information gave me courage to insist. I told my sister, “Get some medical advice about Joli’s eye from an ophthalmologist who isn’t also her grandfather.”
I started researching crossed eyes and lazy eyes. I found out that waiting too long before seeking treatment can result in the eye becoming permanently blind. There are all kinds of solutions—surgery to repair the muscles that causes the misalignment or exercises or eye patching. But itwas clear to me that waiting could produce irreversible vision loss.
I was overstepping a line. Never interfere between parent and child. It’s none of my business; her parents know what’s best for her. I’m just the aunt; I don’t have any children of my own and probably never will. Keep your mouth shut.
I wanted to keep silent, but I know that silence is deadly. I can’t forget the polite silence when I was ten and had blisters around my mouth that made it impossible to smile; bloody underwear well before I started menstruating. How I stopped eating for a season and then couldn’t stop eating. Sleepwalking into my mother’s closet and sleeping during school. There were all these signs that something was wrong with me as a child. Since my father’s father, my grandfather, had moved in with us from the Philippines when I was 7, he’d been sexually abusing me, waking me up at least twice a night. When the molestation first started, my elementary school teacher asked me if something was wrong, but I emphatically denied it.
At age eleven, the pediatric gynecologist wondered about bumps that appeared to be a sexually transmitted disease. “But no,” my doctor had said. “It can’t be. You’re too young.” People didn’t want to acknowledge what they saw, for fear it was true.
But for Joli, I found new courage. I couldn’t afford to love blindly. So I insisted; I pushed; I broke past the silence and spoke up on my niece’s behalf.
Almost five months had passed from when the question began to form in my father’s mind. The tumors grew very quickly, and in that time Joli’s eye became blind. There’s no guarantee doctors could’ve saved that eye even if they had found the cancer early, and in a way, finding the cancer at its final stage was a blessing. Now there was no choice but to remove the eye. Maybe if it had been caught earlier, they would have been tempted to save the eye through radiation or other treatments that can be painful and disfiguring. But timing is everything—if the Rb cells had been allowed to escape and tumors were found outside of the eye, Joli’s survival rate would’ve dropped to less than ten percent.
August 18, 2005, before Joli’s surgery, after Liza and Jorge dress Joli in the surgical gown, they take a last family photo with Joli’s right eye. Joli wears a yellow gown that opens in the back, and thick hospital socks with rough treads on the feet. Her thick curls aren’t brushed, and she’s crying.
When Joli’s parents leave her on the operating table, they still must ask, “This isn’t a mistake? You sure it’s my kid that has cancer?”
After surgery, they will perform scans and biopsies and spinal taps and mine bone marrow. In order to have easy access to Joli’s vascular system, they hide a plastic port, like a piece of uncooked ziti, under the skin next to her left nipple. Her baby smooth skin is bruised from the needles, raw from bandage adhesive that stays stuck for days.
After surgery, Joli will not speak or even cry. Liza will lie in bed and Joli will settle underneath her mother’s breasts as if she’s an enraged squatter trying to move back inside the only home where she ever felt safe. If anyone tries to kiss or touch Joli or if Liza readjusts her position, Joli shrieks like a wild animal. She has white bandages over her right eye, protruding like a fist.
Immediately after surgery, we’ll discover that they’ve found no sign of cancer in the other eye, and that on first glance, there are no obvious signs of spreading. All good news.
As we wait for Joli’s anesthesia to wear off, we’ll sit together in this hospital room and wait. We’ll look out the window so we don’t have to look at each other. We’ll eat soup and drink coffee. We’ll make excuses about why my father, the ophthalmologist, isn’t here for his granddaughter’s eye surgery. We’ll understand that like all of us, he is doing the best he can.
We’ll cover our mouths with our hands and whisper the story into our cell phones. Retelling the narrative again and again to anyone who’ll listen, ending the variation on a theme by saying in one way or another the words we hope are true: “Everything will turn out fine. We’ll get through this.”