Recovering My Fifth Sense

Kavita Das recalls learning to self-advocate as a patient with a cleft palate — and as a child in a family full of doctors.

Kavita Das | Longreads | January 2018 | 18 minutes (4,512 words)

Just two weeks before my birth in November 1974, my parents moved into their first house, a split-level ranch in Bayside, Queens. They had been in America for less than a year, having first emigrated to England from their homeland of India so that my father, a gastroenterologist, could pursue his Ph.D., and my mother, an obstetrician-gynecologist, could receive additional medical training.

While my mother was giving birth to me my father was home raking leaves, because it was fall and leaves need raking, and because fathers were not considered crucial to child birthing in Indian culture. I came into the world around midday, a glowing, healthy, baby of six pounds, seven ounces.

In the hospital, after the nurses had brought me to my mother’s bedside, she began to give me my first feeding. As soon as I started to hungrily suck on the bottle, milky formula began trickling out of my nose. She wiped it away and began again, but the formula, once again, leaked from my nostril. That’s when she suspected that, although I had been spared the perceivable deformity of a cleft lip, nestled between my plump cheeks and hidden behind my rosebud lips, was a cleft palate.

An online search for “cleft,” leads me first to the MacMillan Dictionary’s definition: “A narrow space in the surface of something,” such as “in a rock or in someone’s chin.” Oxford Dictionaries notes that “cleft” is both the past participle of the verb “cleave,” as well as an adjective, meaning “split, divided, or partially divided into two” It also introduces me to a new turn of phrase, “be (or be caught) in a cleft stick,” meaning to “be in a situation where any action one takes will have adverse consequences.” (The phrase derives from an object of the past, a wooden stick with a partial slit in which one can hold something. References to a cleft stick exist in English literature, including Dickens’ Oliver Twist, but according to World Wide Words, the first example of its usage in this particular expression was recorded by the Oxford English Dictionary dating back to 1782, when, in a letter, 18th-century English poet William Cowper stated, “We are squeezed to death, between the two sides of that sort of alternative which is commonly called a cleft stick.”)

When I search for “cleft” on a medical website, however, my search hits closer to home. According to the Centers for Disease Control and Prevention,  a “cleft lip and cleft palate are birth defects that occur when a baby’s lip or mouth do not form properly during pregnancy.” The CDC estimates that each year in the United States around 2,650 babies are born with a cleft palate, a condition where “the tissue that makes up the roof of the mouth does not join together completely,” typically occurring between the sixth and ninth weeks of pregnancy, when the palate forms in the fetus. But while science can explain how and when a cleft palate forms, it is unable to explain why. Research suggests they are caused by some combination of genes and other factors, including substances the mother might have come into contact with during pregnancy.

What is known, however, is that orofacial clefts are more common in Asian, Latino, and Native American babies, and curiously, according to WebMD, “twice as many boys have a cleft lip, both with and without a cleft palate,” yet “twice as many girls have cleft palate without a cleft lip.” Throughout my childhood and even in my teenage years I wondered about the relative significance of being an Asian-American girl, and here, ironically, was irrefutable — even if not positive — evidence of its significance.

***

My earliest quest for the relevance of my Asian-American identity began in gift shops, where I searched through racks of pastel beaded necklaces that spelled out names. Karen. Kathryn. Kayla. No Kavita. Strange, because years later there would be three Kavitas in my small women’s liberal arts college. In high school, there was my search to find Asian-Americans represented in my curriculum. It would not be until World Literature in 12th grade that I would see the lives of Asian-Americans portrayed in Amy Tan’s The Joy Luck Club. Sadly, Tan would be the only writer of color we would read that year, because it turned out World Literature meant mostly reading works reflecting different parts of the world, but always through the perspective of a white scribe, as in Shakespeare’s Othello, E.M. Forster’s A Passage to India, and Nadine Gordimer’s July’s People.

As a baby, I was coddled by my parents out of much love and concern. I grew into a roly-poly toddler and a rambunctious young child, and yet because of my cleft palate, I was besieged with minor health issues. Eating some solid foods and drinking milky liquids caused my nose to dribble. Like other children with orofacial clefts, I had associated issues with my inner ears, requiring tubes to be surgically inserted and rendering plane travel painful. Yet, I was a well-traveled child, journeying with my parents to Hawaii, Mexico, Japan, and India, cotton balls stuffed in my ears to help relieve the pressure.

My parents’ concern grew when I began to speak. I was vivacious, confident in my adorableness, and had much to say. Yet, as words bubbled out of me, not many of them were intelligible to others. I knew what I was saying, but others did not. My questions were often met with dumbfounded expressions or requests for me to repeat myself. “Nanny, Nanny,” I ran around the house calling after my beloved Daddy, my cleft palate preventing me from articulating the sounds of a hard “d.”

Although I had been spared the perceivable deformity of a cleft lip, nestled between my plump cheeks and hidden behind my rosebud lips, was a cleft palate.

Thankfully, around age 4, I began speech therapy with a friendly but firm young, Midwestern, white woman I only knew as Karen. I have vague, watery memories of Karen and our sessions, which took place at the Bronx hospital in which I was born and where my father practiced. I remember Karen being tall, thin, and having a kind face framed by chestnut brown hair, done up in the waves and feathers of a 1980s hairdo. I also remember lots of machines resembling movie reels and audio tape decks, only bigger. I listened through headphones too big for my tiny head and repeated what I heard over, and over, and over again. I recall feeling frustrated when Karen said “No, not like that. Like this.” And when she repeated the desired sound back to me, I wondered, “Isn’t that what I just said?”

I have only two mementos from my years of speech therapy with Karen. The first is an oversized stamp of a moose she presented to me as a reward for my efforts, which launched my eventual stamp collection. The second is her unremarkable Midwestern accent, separating me from my Queens classmates, and later leading people to remark, “You don’t sound like a New Yorker!”

At age 5, I underwent surgery to repair my palate by essentially closing the gap in it. There was great hope this would resolve my numerous related health issues. When I woke up in my hospital room, I remember pulling a piece of remnant red string from the roof of my mouth and being startled by the realization I could no longer breathe through my nose. While repairing my cleft palate, the surgeon had mistakenly sewn closed my nasal passages. I would never breathe through my nose again. And while this flawed surgery resolved some health issues, it spawned new ones.

My immigrant physician parents couldn’t believe how American medicine had failed their daughter. They wondered how a 5-year-old would adapt to suddenly not being able to breathe through her nose. Their new greatest fear became that I would unconsciously shut my mouth, asphyxiate, and die in my sleep. So they moved my twin bed into their bedroom and every night I went to sleep with my mother’s death-defying invention in my mouth: a pacifier with a hole cut into the top. At the age when most children were being encouraged by their parents to assert their independence and head out into the world of school and friends, I was pulled back to my parents’ side and reminded constantly of how precarious my life was.

The most puzzling side effect of my cleft palate was that my parents began to exhibit a strange, contradictory pattern of panic-inducing overprotectiveness alternating with a laissez-faire attitude, especially when it came to leaving me in the care of others. As a child, I was not permitted to attend sleepovers. So when a friend had a birthday slumber party at her house, I was forced to leave after the cake-cutting and opening of the presents. When family friends hosted an overnight cast party after a rehearsal for an Indian play we were putting on at the local Hindu temple, I was the only child who couldn’t stay over, returning home with my parents, my eyes stinging as I cried all the way home in the backseat of the car.


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In stark contrast to their typical claustrophobic overprotectiveness, there were several instances when my parents left me in the hands of complete strangers. During a trip to Acapulco, Mexico when I was 5 or 6 years old, my parents left me in the care of a white middle-aged couple who were seated on a neighboring towel on the beach, while they went off to give parasailing a try. I vaguely remember realizing something was wrong when I saw the couple looking at their watches while whispering to each other about what to do, as I pretended to play in the sand to cover up my worry and boredom.

Eventually, my parents showed up, full of profuse apologies, explaining how my extremely near-sighted mother had knocked her eyeglasses into the sea, preventing her from being able to see clearly the signal for when she should pull the string on her parasailing chute. She landed in choppy waters, unable to swim, but fortunately with a life preserver. The couple distractedly listened while quickly packing up their beach gear and making a hasty exit.

My mother and father were clearly unphased by this episode because just a year later, during a visit to Japan, they did it again. This time we were in a Tokyo shopping mall and I was holding court, ironically in the food court, with several teenage Japanese girls surrounding me and smiling at my every word and antic. I was regaling them with my favorite knock-knock jokes and doing show-and-tell with the ingenious toys I had just purchased, which included a disc on a string that whirred and lit up when you pulled the string on both sides. My parents found endearing my ease in interacting with people I had just met, on the far side of the world, but also saw it as a rare opportunity to take a break, heading back to a jewelry store where my father had tried on a coral ring but had not purchased it due to their own indecision, coupled with my growing impatience.

As soon as I started to hungrily suck on the bottle, milky formula began trickling out of my nose. My mother wiped it away and began again, but liquid formula, once again, leaked from my nostril.

I was enjoying being the center of attention and being fawned over by these beautiful teenage girls, especially since at least in my experience, American teenagers didn’t give 6-year-olds the time of day. At some point, I looked over in my parents’ direction and didn’t see them. I started to panic and began to break away from the group. Seeing my distressed expression, one teenage girl reassuringly said, “Don’t worry, they’re coming soon. You stay here, you show me this,” pointing to the blue and red plastic disc I held suspended between two strings. Rather than being contrite, when my parents returned, they snapped a few photos of this encounter and pasted them into our family album for everyone to see.

Meanwhile, at home, I began lodging protests against sleeping in my parents’ room, insisting that they move my twin bed into my playroom, which I reasoned to them — and to myself — was right next to their bedroom. In truth, I was torn. I wanted to be as independent as my friends at school, yet I was also scared, less so of real dangers and more so of those conjured up by American television, namely the Blob and the Yeti. I no longer worried about asphyxiating in my sleep, and after my parents turned out their bedroom light, I would quietly pull the pacifier from my mouth and place it beside me, where it would lie for the rest of the night.

Although nighttime trips to the bathroom or walks down into the dimly lit basement brought on terrors of what lurked in the dark, I continued to protest, and my parents moved my bed into my playroom. On my first night in my own room, when they turned out the light, I insisted they leave my door and their door wide open, just so they could hear my screams. And then I conducted a test of the emergency broadcast system by calling out to them a few minutes later, to which they replied, their voices laced with impatience, “Now, just go to sleep!” I slept with the covers pulled over my head and tightly tucked all around me. Ironically, if I did asphyxiate, it would not be due to my mouth-breathing, but to the cocoon of bedsheets I’d entrapped myself within, my only protection against sinister forces.

In addition to my curtailed freedom, I wrestled with other results of my failed surgery. I was still hampered by upper respiratory illnesses and was a magnet for colds. When I caught a cold, it was interminable, filled with long, sleepless nights of trying to blow my nose while having no control over my nasal passages. I could now only take in four-fifths of the world: I had all but lost my sense of smell. What does it mean for a 5-year-old to lose her sense of smell? To lose a way of perceiving the world as other children your age soak it all in is to be at a disadvantage. To join your friends in burying your noses in colorful roses during a game of hide-and-seek on a spring day at the Queens Botanical Garden, to hear them sigh blissfully while you have no olfactory reaction, is to be made keenly aware of this disadvantage. Now that I could speak, I was not allowed to smell.

All the senses work in concert and enhance one another, and it was missing out on the interplay of smell and taste that left me most bereft. I was blessed to be part of a family claiming not one but two Indian subcultures — Tamilian and Bengali — which meant two languages, two sets of cultural customs, and best of all, two cuisines, one given to chilies and coconuts, the other to haldi, or turmeric, and gur, a thick paste of unrefined sugar. Spices are central to Indian cuisine, from the comforting scent of ghee, clarified butter, to the heady aroma of garam masala. As the saying goes, you eat food first, not through your mouth, but through your eyes and nose. By all accounts, my mother is an excellent and inventive cook, and while I grew up loving her dishes, I was always aware that unlike my parents and my two siblings, through my taste buds I was only enjoying a fraction of the flavors. This feeling was compounded when my mother, at the dining table, would ask us, “Can you taste what I put into the dal today? I added a different spice.”

***

In defiance of my health challenges I immersed myself in activities: learning to play classical violin, learning to sing Carnatic South Indian music, dreaming up new worlds and identities in one-girl shows I staged in our basement, my stuffed animals playing the role of an obedient audience. What I never got to immerse myself in were my mother’s and father’s tongues. Early on in my treatment, my parents had been advised by doctors to not speak to me in any language other than English because a child like me would have enough issues learning to properly speak one language. This was yet another adverse outcome of medicine practiced in a country where other languages are not valued, and not taught to children during formative years, when their brains have the greatest plasticity, allowing them to learn several languages simultaneously. Unlike my palate, this cleft could not be repaired.

As my colds, flus, and upper respiratory illnesses persisted, my parents wondered if it was time to seek a surgical solution. The surgeon who had made the error was remorseful and had offered to correct it, but had passed away of cancer soon after. I remember feeling a pang of guilt when, upon hearing of his death, I thought it was God’s way of punishing him for his error.

My earliest quest for the relevance of my Asian-American identity began in gift shops, where I searched through racks of pastel beaded necklaces that spelled out names. Karen. Kathryn. Kayla. No Kavita.

When I was around 12, I traveled with my father to Boston Children’s Hospital for a consultation with a supposedly renowned ENT surgeon. My father had put his hopes in this first-rate medical facility and his fellow physician. The physician, along with his ENT residents in training, “rounded on me,” which meant he examined me as my father provided him with my medical history while the students observed. Afterwards, he asked to examine me in private. Instead of looking up my nose or into my ears, he peered at my ear and began pinning it to my head with his hand.

“Your ear sticks out. Perhaps we could pin it back, like this?”

I remember being a strange mix of dumbfounded and enraged.

“No thank you. My ear is just fine,” I muttered.

Although I had developed a deep fear and loathing of being poked with needles and prodded with medical implements, I was unprepared for this type of violation.

“Fine. Let your ear stick out through your wet hair at the beach,” he shot back, in a mocking tone.

It was clear from the way he interacted with his worshipful surgical residents just a few minutes prior that he was unaccustomed to hearing the word “no” uttered by anyone, let alone a 12-year-old patient. During the long drive back to New York, I recounted to my father what had happened. Whether because the surgeon offered no definitive solution or because of what I relayed, my parents closed the door on corrective surgery.

I learned to live with the effects of my ill-repaired cleft palate and so did my parents. In addition to my persistent upper respiratory issues, I needed to get braces twice because my palate and mouth-breathing impacted the growth of my jaw and teeth. Truthfully, these were all secondary to the daily challenges of being an Asian-American teenager in a virtually all-white high school in suburban New Jersey, where we’d moved when I was in 8th grade. My New York City street smarts were no match for passive-aggressive rumors whispered in the hallways and racist notes tucked into my locker. The notes contained unflattering pencil drawings of me accompanied by notes about, my “smelly” brown body, “greasy” black hair, and “metal mouth.” Still, I survived high school mostly intact, even managing to balance being features editor of the school paper, playing violin in selective youth symphony orchestras, and squeaking by academically to get into a venerable women’s college.

It was in college that I thrived, away from the watchful and worried gaze of my physician parents. I lived alternately with roommates and alone, learning to think for myself and rely on my own intuition, and doing so alongside other young women who hailed from all over the country and world. As I got to know them, it became clear that despite their varied backgrounds, each had their own set of struggles against their families, their cultures, or their own deep insecurities.

I lived abroad in Paris for six months. The city was awash in sights and sounds, but although I had nominal olfactory capabilities (10-20%), I longed to immerse myself in its storied smells. I visited a parfumerie, whose cornucopia of fragrances might have been overwhelming to others, but to me, was evocative. I listened carefully to how the purveyor described the perfumes I tried on and settled on L’Eau d’Issey Miyake, precisely because I could only pick up the faintest traces of its light, clean, scent. I looked forward to going to the boulangerie, a new experience for me, and upon entering, I got an inkling of what people meant when they spoke of the rich, yeasty aroma of fresh bread coming out of the oven. And when I drank my first glasses of wine, I mimicked my roomies as they swished the liquid around in their glasses, sticking their noses over the rim, but the wines I could taste best were the ones I liked least — the most robust reds — which burned my nasal passages with the scent of alcohol, reminiscent of high school chemistry lab.

After college, I continued my journey of independence, moving to Philadelphia to work in city government on community development issues. I found an apartment, learned how to cook, and for the benefit of my health, I joined a gym and found a dentist I trusted — not an easy endeavor since as a mouth-breather I found dental appointments triggered much anxiety. So, I was taken aback when on a weekend visit with my parents, they suggested I give surgery one last try to open my nasal passages. My mother would regularly shake her head during meals, saying, “If only you could smell. This would taste even better!” I had become acclimated to being a perpetual patient under a doctor’s care, but more than this, I had grown used to being under my parents’ constant care. So, despite strides I had made towards reclaiming responsibility for my own health care, I found myself relenting and agreeing to let them look into it.

I lived abroad in Paris for six months. The city was awash in sights and sounds, but although I had nominal olfactory capabilities, I longed to immerse myself in its storied smells.

Over the next few months I would be taken into surgery twice, put under three times, and endured two more surgical errors. During the first surgery, the surgeon made a split decision in the operating room not to go along with the treatment plan of inserting temporary tubes in my nasal passages and instead made incisions in my nasal passages to see if they would suffice. They did not. A few weeks later, I went into surgery again, and he inserted the tubes but left the premises before I had awoken. When I did wake up, I could barely sip water from a straw because of the way he had left the tubes dangling into the back of my throat. I felt like I was being choked. The ENT residents wrung their hands as they decided whether or not to call the surgeon to ask him to return. Meanwhile, my parents whispered to each other in Bengali and finally my father helpfully suggested that instead of trying to move the tubes up, which would require them to be unsutured and resutured, perhaps they could just snip the bottoms of the tubes. The residents nodded their heads vigorously at this revelation and I was put under once more.

The next several weeks were rough. In addition to dealing with increasing pain and inflammation from the chafing of the tubes and a growing nasal infection, I ended one government job, moved, and began another government job. Still, I endured it because I knew it would be worth it in the end. I would finally be able to breathe through my nose, and no longer have to deal with myriad complications.

When the day finally arrived to have the tubes removed from my nose, I felt a strange mix of relief and excitement. Though the fever brought on by the nasal infection had subsided, the painful swelling persisted. Now, I eagerly anticipated the chance to finally do two things most everyone else does without a second thought: inhale and exhale through my nose. After the surgeon pulled out the tubes, my pain immediately lessened. But when I attempted to take a deep breath in, instead of feeling my lungs expand as they filled with air, I felt as if I was trying to drink the thickest milkshake through the thinnest straw. Whatever air I was able to draw in through my nostrils was woefully inadequate. I tried again and again, but to no avail. Since I could only pull a tiny amount of air into my nose, I still had to breathe through my mouth. The surgeon blamed the operation’s failure on the proliferation of scar tissue narrowing my nasal passages. Essentially, he was blaming his failure on the physical marks of previous failures. We had never discussed the unlikelihood of success. I was crushed. This had all been for nothing.

As words bubbled out of me, not many of them were intelligible to others. I knew what I was saying, but others did not. My questions were often met with dumbfounded expressions or requests for me to repeat myself.

Leaving the doctor’s office dejectedly, we stepped out into a bright spring afternoon. The air felt fresher and crisper to me than ever before, but I attributed this to spending the last several weeks with tubes shoved up my nose. At dinner that night, when my mother poured a spoonful of ghee over my rice, the steam from the hot rice carried the ghee’s buttery, rich aroma up into my nostrils. Throughout the meal, it was like I was tasting each food for the first time — the nuttiness of coconut flakes, the pungent tartness of sambar, the bright spiciness of lemon pickle. I had not regained the ability to breathe through my nose, yet I’d had more of my fifth sense restored.

I came to savor food in new ways, along with the fresh smell of newly cut grass and the heady scent of a bouquet of peonies. I even relished strange smells, like the hearty pungency of boiled eggs and the eerie duskiness of smoke. And my interest in perfume and wine, first piqued in Paris, grew as I now finally learned to grasp the difference between top notes and base notes.

While I emerged from this latest medical fiasco having regained a moderate sense of smell, I also emerged from it resolving to be my own patient advocate, relieving my parents of the burden of trying to be both my parents and my doctors, a burden I’m certain, was both unexpected and trying for them. I recalled the mix of trepidation and determination with which I had moved out of my parents’ bedroom as a child. Fear had gripped me after they had tucked me in, turned out the light, and disappeared into their bedroom. I also recalled the way the sunlight had streamed onto my bed when I awoke the next morning in my own room.

* * *

Kavita Das worked in social change for fifteen years and now writes about culture, race, feminism, social change, and their intersections. Her work has been published in the Atlantic, Los Angeles Review of Books, the Washington Post, Kenyon Review, NBC News Asian America, Guernica, the Rumpus, and elsewhere.

Editor: Sari Botton