Even cleft palate, considered a deformity today, may have been viewed differently in the past. Erika Molnar, a paleopathologist at the University of Szeged in Hungary, described a man born with a severe cleft palate and complete spina bifida around 900 C.E. in central Hungary. Breastfeeding as an infant and eating and drinking later in life would have been extremely difficult for him, but he lived well past his 18th birthday. He was buried with rich grave goods—and a horse that also had a visibly twisted muzzle known as “wry mouth.”
“Was his survival a result of high social rank at birth, or was high rank the result of his deformity?” Molnar asks. “His unique position could have been a consequence of his uncommon physical characteristics.”
I was born with a single cleft palate that, in 1961, days after my birth, required surgery to close the hole created by my palate not fusing together. Medical research says that smoking while pregnant, obesity, some medications and other factors cause the deformity. In the fifties and sixties, smoking was the thing to do until all the warnings came out. My mother was a smoker up until I was born. I never once saw her smoke and I was told she quit right after I emerged. So far, I’ve not been buried with “rich, grave goods” or a horse with the same predicament as mine, and my societal rank runs right down the middle.
Having a cleft required many surgeries. I remember some in my early youth: a rushed trip to emergency occurred after one surgery when the packing in my nose failed. The flow of blood ran unabated even with the ministrations of a neighbor nurse, and I bloodied cold cloths on the drive to Huntington Hospital thirty miles away. It was at night when most emergencies occur. I remember the long drive there, the streetlights flashing across the windows, as I lay prone in the back seat trying to keep my head elevated. As more blood spilled, I began to panic and shiver. I was put on a gurney, wheeled into surgery and the vessels in my nose were cauterized to stop the bleeding. It was a very long night. We drove home in the early morning light, my head against the door rail and my dad just driving in silence. I wondered what he was thinking, what the day ahead entailed – another political event? Tennis? Or just sleep? He walked me into the house, to my room, and I lay down and slept – the packing inside my nose made it hard to breathe, my mouth searched for the air I needed.
To this day, I do not like the sight of blood. Over the years, there were many other surgeries to correct and make my deformity less distinct and give me some sort of normalcy.
Kids with clefts are more susceptible to all kinds of societal and psychological issues in relating to people as they get older. Bullying takes the form of name calling which, in some cases, leads to physical abuse, schoolyard fights and loneliness. For me, it manifested itself in diminished self-esteem and an extreme case of sensitivity to slights against me. At fifty-seven, it was still an issue and continues to be in relationships with friends and my marriage.
Speech therapy is something that most cleft palate kids will go through. In elementary school, I was called out of class for therapy in our school. I’d march my little seven-year-old self towards the front office and enter into a private door and for a half hour a week be tutored in how to place my tongue, perform exercises to build strength in my cut lip, work consonants against my teeth: Ts and Ds were practiced until they were sharp and defined until I got lazy again after I left, and they slipped back to their normal sibilance. I don’t recall who my therapists were in elementary school. They were doing their job and dispatched me quickly and efficiently back to class.
Later, when the program was no longer available in middle school, I saw an outside therapist that I kept secret through high school. Tuesdays, I’d ride my bike from home up the neighborhood streets, past the high school, the country club’s golf course, and farther up into the hills before reaching her small, ranch-style home on a cul-de-sac. Mrs. McGregor was tiny, with a laugh like Lily Tomlin’s operator character – a sort of snorting guffaw that was infectious. I’d see her for an hour. As the years progressed, our sessions became less speech therapy and more psychological band-aiding given that kids in school were tough, and bullying came at odd moments. Some sessions I’d leave strung out having opened that week’s wounds.
In school, I never belonged to any one group. I was jock-ish enough to run track, nerdy enough to participate in school musicals, and bookish enough to work on the school newspaper and accepted into AP English.
In middle school, I realized I was attracted to boys reading about hot football players’ carnal pursuits in Peter Gent’s novel, North Dallas Forty, a book my science teacher plucked from the interior of my textbook during class and wondered aloud if I should, at my age, be reading it. I was precocious about sex, or at least reading about it and then seeing it in movies.
My father took me to The Sailor Who Fell from Grace with the Sea in which Sarah Miles masturbates, and she and Kris Kristofferson were explicitly conjoined. I was a sophomore in high school filled with prurient interest and wonder. When the lights came on, and some of my dad’s friends were sitting behind us, my father was angry and embarrassed that we were there. I also snuck into the film, Looking for Mr. Goodbar, with Diane Keaton as a woman exploring her own nascent sexuality only to discover the danger of it. I discovered that Richard Gere was far more compelling than Ms. Keaton.
At the beginning of my junior year, I started seeing a girl who became my first girlfriend. S___ asked me out on a date, as it never occurred to me to ask a girl beyond needing someone to go to a dance with. She was insistent enough that we began dating and I enjoyed being with her. As with all firsts, S___ still resonates deep inside me, and with the other two women I was eventually with, there’s a sort of grief of deception that I’ve never been able to shake. My first girlfriend gave me a confidence I needed, that someone could look past the deformity, past my speech problems and see me and kiss the cut lip, which was deeply healing on so many levels. I’m not sure she knew or understood it. How could she? I never told anyone it was an issue, or opened up enough so they would understand the pain I was in.
We were very young, but those months with her were heady, were filled with sunlight until I knew I’d hurt S___ by breaking up with her, hiding my truth, even if I’d never be able to tell her directly.
Young years are the cruelest: all insecurities run along the surface; self-esteem is at its most brittle. I know now I’ve never recovered. I was able to repress it for decades. As I entered my twenties, I hung out with fellow creative school friends who didn’t care, started working, began adulthood and I started having sex with men. I preferred the darkness of night, always, so my face was in shadow. I’d leave before light, or my night’s partner left after we finished. I didn’t want to wake in the morning and be faced with their disappointment on how I looked. I didn’t have the body to compensate for my cleft. I didn’t work out incessantly though I was a runner having done club track and field since 7th grade.
People look for validation in all sorts of ways. I needed it from sex, from men who’d love me for an hour or so, fleeting moments almost anywhere.
At fifty-three I suffered a near heart attack. When my life stopped its forward progression after the ensuing triple bypass, my mind started delving into the past. I’d lay awake at night listening to music I’d discovered in my twenties (Jane Siberry, Van Morrison, Joni Mitchell). Memories bubbled to the surface; night offered a dark canvas in which scenes came vividly to life – verbal abuses, family strife, and slights. Deeper I’d go, my husband sound asleep next to me, music in my ear buds the soundtrack to hurt.
One night, deep into the early hours I was listening to music; kaleidoscopic notes and rhythms layered under visions of my young self, sliding down hills of wet mustard, their green stalks topped by yellow flaked bunches. Spring Saturdays, dew lay heavy upon the thin grass. My childhood friends and I collected cardboard and slid down the hills with abandon. We were small, we were inseparable, Steve, Nancy and I, until their parents had other lives in mind and they both were gone from the neighborhood, one after the other. These two had no care what I looked like; we were adventurers heading off to climb Buzzard’s Peak or climb through the spider infested bamboo forest, or inch our way up a driveway to what was surely the most haunted house in the neighborhood. But that night, listening, I was reminded of how everyone leaves: friends, grandmothers, lovers – and I wept uncontrollably. I left our bed and went to the window and started thinking about leaving, too.
If you put your tongue to the top of your palate against your teeth and create the tsk tsk sound, the hard-consonant forces wind forward. It’s the sound you hear when something is wrong, or rather, when you do something wrong. My early years were about hiding things, and about deception. Growing up in a staunchly Republican home amid like-minded folks, both friends and neighbors, as a family, we were always under a microscope. My mother made us keep the surfaces clean, kempt, fashionable. Leisure suits of pale blue for me, and brown for my brother. Family Christmas cards were formal affairs and about unity (matching Hawaiian shirts on holiday) and smiles even though memories of strife, in making some of them, remain real and palpable. I was always being admonished – my dress, my choices, my dereliction of family chores, not putting something in its exact right place – it was a constant chipping away. Nothing I ever did, or achieved, was met with satisfaction – my dad always wondered why I hadn’t done more and my mother always found fault.
From the outside, I imagined people thought I was lucky, privileged, and sure to be involved in all sorts of things people with money did – and I was – but I wasn’t interested in showing horses, Los Angeles Rams football games, events that sat us alongside people for whom others felt lucky to be around. When I was older, I saw many events and outings as politically motivated gifts and perks. I’d be lying if I didn’t enjoy a couple of them: Bruce Springsteen tickets and a Silver Pass to Disneyland.
If I were to utilize and practice my exercises from speech therapy, I didn’t apply them around the dinner table as I didn’t have much to say, nor did I have much in common with the rest of the family. I ate silently. They’d chatter on about sports, horses, the daily happenings and future travel. I don’t remember many extended conversations at dinner. My dad came home, fixed drinks, mom’s food filled the table, and we were efficiently sat and done with dinners quickly, and then us kids disappeared into our rooms, except the one whose week it was to do the dishes, my dad to his office desk and mom to the den and nighttime TV. That is, when we were all at home. Most of the time, my parents were either gone on a trip, at a political function, or we were doing sports: my brother had baseball, I ran club track, and my sister showed horses until she left for college. The last real dinner we had as a family, other than holidays, happened at the end of my freshman year of high school.
The one constant I had throughout the year was speech therapy. I’d arrive sweaty and spent and leave chilled and exhausted. In between, I’d ride the emotional roller coaster, my therapist working through my anxieties one by one, my angers, hurt and distresses. My Ts and Ds and Ps and Ss were practiced. I could roll my tongue. I learned how to enunciate. My mom’s friend said one day “how articulate I was,” and she’d feel that she wasn’t throwing money after bad.
“We are strengthening your palate muscles,” my therapist said, “because you will need more surgery, and when they cut into your lip, you will weaken the muscles we’re building.” She’d hand me a straw. “Let’s do this some more,” she said. She told me to hold the tip of it in my mouth and suck as hard as I could while she placed the tip of my finger on the end blocking the air. “I’m prescribing you milkshakes. Thick ones. I want you to drink them with straws that’ll make you work at building those muscles.”
“I can do that,” I laughed.
“Smiling helps, too, you know,” she said, “I want you to go like this…” She pursed her lips and then made a broad smile and repeated it several times. “Now you,” she urged and nodded her head. I mimicked her and laughed with her as she said, “Now do this at home in the mirror as much as you can.”
I was a mediocre student. I would not practice, but I did drink milkshakes. Every single milkshake has me thinking of her.
Several years later, in college, I was living at my grandmother’s home in Santa Barbara, California. I was in my first year of photography school, having spent the previous year traveling the world, working, and trying to erase the memory of bad grades at the University of Utah. In my second year there, the school nestled in the hills of the Wasatch Range, I was coming to terms with myself: having sex with men, rushing a fraternity, skipping classes that didn’t really interest me. I spent too many hours in the Wasatch hiking and spending time alone. I knew it was time to go when I’d decided to drive with a cast on my broken foot, whiskey and coke cradled between my thighs when I rear-ended a car. In going for the brake, my cast got stuck between it and the gas. My car reeked of Jack Daniels and the cop who stopped told me so. “I could do a lot more to you cause your car smells of booze and you’re driving with a half-empty bottle in the passenger seat, but I’m not,” he said, letting me off a large hook. The world was telling me to move on, move forward, or adjust. I finished out the semester, drove home for Christmas, Cs and Ds marking my progress and didn’t return to Utah for another three and a half years.
In Santa Barbara, things were beginning to fall in place. My grandmother’s house still had a view out across the hills before other houses and unkempt trees blocked it; the large round rock I encountered as an exploring child still held mystery against the coastal mountains that stretched across the horizon. The Pacific could be seen, and sunsets were plenty there as we sat, sipping our box wine, my grandmother and me. I’d moved in with her shortly after my grandfather passed away, which was shortly after I began photography classes.
I read Michael Cunningham’s novel A Home at the End of the World in that spot – devouring the relationships and the unsustainable triangle love affair in two days. It was the first novel I’d read dealing with homosexual themes, and I avoided having to explain it to my grandmother by reading it while she was away on a trip. Having put travel aside in the last few years of my grandfather’s life, she traveled in earnest leaving me home alone quite a bit. She was not one to let grief paralyze her, which she could have after forty some years of marriage, but she did bring him up in casual conversation many, many times even when she eventually remarried. My grandfather’s name was Jack, who rolled off her tongue like an inner secret, even sometimes forgetting that her current husband was standing there. When her second husband’s true mean nature revealed itself, I found it a source of fight in her when my grandfather’s sweet memory slipped out of her as a rebuke of his verbal abuse. For me, watching her cinch up her saddle and carry on was a lesson in perseverance. I took from her the idea that even when one’s footing was ripped from under you, it is best to continue on. I’ve heeded this lesson on more occasions than I’d wished.
I had my last surgery to repair my cleft and remake my nose and scar in Santa Barbara. My mother drove from Los Angeles for an overnight stay. I’d rather that she’d stayed through the healing, but she took me to hospital, and then back home to my grandmothers after the outpatient surgery. She was gone early the next morning and left a gift of a blue shirt, which I gathered I was supposed to wear when I healed to look my best. I was under the impression that this surgery would give my face the normalcy I’d longed for. My nostril would no longer be flat but lifted to match the other in its rounded design, the scar diminished, and it’d be a mirror to the line below the nostril like everyone else’s. I’d be able to grow hair there and eventually a mustache to cover any scar that was left. Days went by after the surgery. The bandages came off one by one, the packing removed, and the swelling reduced by ice packs and time. When the moment came, and the final bandage removed, the doctor leaned in and looked closely at his work and was happy with it.
For days, I stared in the mirror trying to detect a change, but it seemed nothing was different from before the surgery, and I launched into the first real depression I remember having. I wasn’t going to be the same as everyone else. After all these years of surgeries and bullying, wishing and hoping to be normal, my face refused to change. My lip was flayed open and stitched back together from the inside. I lost the muscle memory of speech therapy and had to consciously retrain my tongue. My diction was sloppier, more due to negligence than the surgery because I was angry, sullen and withdrawn for several weeks during our first summer school break. I took it out on my parents, went for aimless walks on the endless beaches above the University, and stuck to myself until school resumed and my mind was busy with film projects and photography.
I met the last girlfriend I would ever have. She was sweet, kind, and fun to be with. For several months we were together, but again, emotionally, I couldn’t connect. I decided after we split that I wouldn’t date another woman – that it wouldn’t ever be fair to them since the breakup would always be painful and one-sided because I couldn’t be honest. What N___ did do for me, though, was again restore my confidence. She brought me back to the world and allowed me to at least feel I belonged even if I couldn’t fully invest in her like she needed and expected. I look back on the breakup as me being cowardly again, but it would be years before I fully revealed myself. The hurt I instilled in her was a clear sign that I never wanted to make another woman feel that way, so I never encouraged another relationship with a woman, nor did I feel that even a single dalliance was right. After we broke up, I knew for myself what I was even though I hadn’t gone through the act of self-acceptance, which, for me, was hard to articulate.
Having a cleft palate was immediately recognized, being gay was a hidden desire that I could keep to myself as long as I needed except for the sexual impulses of the young – the furtive glances, men in magazines, the places where men were that quenched a need. Those were the things I clung to in the following months after leaving N___. School was just an escape from my burgeoning self.
At the only Santa Barbara gay bar, on my second visit, T____ came up in front of me, inches from my face and said, “I know where you live,” as his opening line. Shocked, I didn’t quite know what to say. “I’ve seen you mowing the lawn.” By now panicked, since my secret was exposed, I was still speechless. He walked away, but later, I worked up the courage to ask him how he knew where I lived, and it turned out he was foreman on a ranch behind my grandmother’s house. We ended up at his place, a double-wide trailer with a chamber of commerce view out to the ocean amid ancient oaks. We spent the night together without much sleep. Over the course of a couple of months, we fell in love. I, for the first time, finally understanding what love felt like, and knowing I was loved back. Discovering what sex was with love was a revelation. Despite my deformity, people could fall in love with me, and I with them. My adulthood started, and when I made love, I forgot my face, and the years of pain fell away, and my life gained meaning. I developed my own “high rank,” and I could be buried with the best gifts of love and understanding amid golden chalices and filigreed mirrors, and that my face didn’t matter, that there was gold in the shadows of my life.
A few weeks ago, I was at our local market. A black man came to help me, and I noticed the telltale cleft scar at his lip. He had a double cleft. His big, white eyes and mine locked as most of us do when we see fellow clefts. We are never sure of whether to acknowledge our solidarity or not. In recent years, I’ve made a point to and this time I pointed to my scar and nose, nodded, and he offered a fist bump to which I bumped back.
“How has it been for you?” I asked.
“Not easy,” he said, “except now.”
I could have wondered if he’d had the same advantages I’d had, doctors, therapy, schooling, but in the moment it didn’t matter. We telepathically transferred our psychic wounds to each other and connected. I turned my face down pretending to search the deli case for something giving me time to compose myself. He waited patiently. It was like this every time now. Every time. I wanted to know what it’s been like for them. Have they suffered? Has the world treated them with ill will or kindness? Have they weathered the bullies, the nights of vice-like aloneness, ideas of stashed pills?
When I looked up from the deli case, we smiled at each other, our histories arcing in the air, and then he asked me what I would like from the case.