An economically devastated swath of Appalachia became ground zero for America’s alarming epidemic of opioid addiction. These are the people trying desperately to lift themselves up and out.
When I met JR and Nikki they’d just run away from their own lives. They were penniless, with a backpack full of clothes and a purse containing two cans of potted meat, a packet of crackers and a syringe. They were walking down a set of train tracks between Danville and Madison at the center of West Virginia’s coal country. It was hot out. The air shimmered, thick with creosote oozing from the railroad ties.
I asked them for directions and they asked me why I was walking to Madison. I told them I was hitchhiking through southern West Virginia to learn about oxycodone, about how it had marbled through the hills of this isolated pocket of Appalachia, pushing methadone clinic check-ins up 500% in five years in some parts of the region, and raising the regional death rate from overdose to eight times the national average. They told me about being “D.O.A” at the ER, about smuggling almost a thousand pills a month from Florida to West Virginia, and about the nightmares their toddler had after a crowbar-wielding addict ripped open their front door to get at the drug safe.
We snuck down behind a little league field and I watched as JR cooked up a 20mg Roxicodone pill on a spoon and shot it into both of their arms, using an iPhone charger to tie off. It was the Fourth of July. Their pupils constricted. Nikki threw up the potted meat.
* * *
I had arrived in Appalachia coal country — a geographically unique region spreading across the border between West Virginia and Eastern Kentucky — two days earlier, intent on spending the next week hitchhiking and looking for stories about the region’s opioid epidemic.
I was headed east toward Hamlin when I caught my first ride. Becky was a round woman with limp, thinning blonde hair and sun-slapped skin. I sat in the back next to one of two kids. He stared. Becky smoked. The Pontiac struggled.
Becky’s “Lil’ Sis” was a teenager when they prescribed Oxycontin for her endometriosis. It was the boys at her school who showed her how to crush the pills and snort them.
“It happened so quickly,” Becky said.
Lil’ Sis would come round the house to “see the baby” but instead steal jewelry and cash while no one was looking. Fraud and burglary became a part of her life and, twelve years later, she was locked up on multiple counts of theft.
“[Lil’ Sis] had the kid just before she went in,” said Becky. It took three days until the newborn even began to show withdrawal symptoms. They had the child on life support for fourteen days before going home with a little infant methadone kit.
The web of factors responsible for this drug epidemic is complex.
One hundred fifty years ago, the southern Appalachian Mountains stood as one of the east coast’s last great strongholds of rural frontier life. But by 1900, ninety percent of the coal-rich land in Mingo and Wayne counties was owned by outside capitalists. Over six hundred “company towns” — where political organizations came under the control of corporate owners and policy was directed toward economic interests — were constructed between 1900 and 1930. They outnumbered independent incorporated towns five to one. Mountain men became company men. They toiled beneath the earth, sucking black dust and pinching off the occasional limb at the joint. They purchased groceries from the company store, visited the company doctor and sent their kids to the company school.
As one might expect, mining profits did not trickle down. By the mid-twentieth century, coal country had become emblematic of entrenched American poverty. It was a visit to the region that so unsettled John F. Kennedy in 1960, sparking a promise that led to Lyndon B. Johnson’s “unconditional war on poverty” in 1964.
Yet, throughout the latter half of the twentieth century, regional mining jobs continued to decline, towns withered and welfare became a way of life for many.
Starting in the 1990s, this swath of Appalachia began dealing with another dark outside influence.
Released by pharmaceutical giant Purdue Pharma in 1996, the sustained-release opiate OxyContin saw annual sales grow from $48 million to $1.1 billion between 1996 and 2000. By 2004, it was the most prevalent abused prescription opiate in the country. Marketed as a treatment for ailments such as chronic back pain — a common complaint in coal country — OxyContin is billed as a ‘slow-release’ preparation of oxycodone. But for addicts uninterested in a slow release, crushing the tablets and snorting or injecting them quickly put an end to that. By 2002, unintentional overdose deaths from prescription opioids surpassed those from heroin and cocaine nationally and, in West Virginia, prescription rates were running close to five times the national average. The demand was massive. Coal country saw the rise of what came to be known as “pill mills” – physicians’ practices specializing in unwarranted opiate prescriptions.
My new acquaintance JR was eight years old when he first heard about OxyContin, fifteen when he got his first opioid prescription and eighteen when his mom first sat him down and shot him up on his birthday.
“She said she did it because she knew I’d be doing it,” he said. “You know, she wanted to make sure I did it right.”
Today JR is 25. He’s been dating Nikki for seven years. He’s got a tattoo wrapping around his eye and the words “Faith” and “Hope” etched across his knuckles. All three tattoos came from ink-dipped staples behind bars.
Nikki is short, rotund and drawled, with near-black roots popping from beneath near-gold hair. In 2008, her dad and uncle went into business buying OxyContin prescriptions from pill mills in Florida and trafficking them up to coal country. Demand outpaced supply and, since Nikki and JR were struggling financially, her dad soon asked JR to join the venture.
“You could take $1,500 down there,” JR said, “pay for your doctor’s appointment and all your prescriptions, hotel for a night, and you can come back up here and sell 180 thirties in less than a day for $5,400.”
JR always names pills by their concentration. “180 thirties” refers to 180 30mg pills.
The three men worked in a rotating schedule, each driving to Florida once every three weeks. When they arrived back in Beckley, West Virginia, JR handled distribution from the apartment where he and Nikki lived with their infant son. He was selling a lot of pills, and he was shooting a lot pills.
On one trip back from Florida, he nodded off after shooting a thirty in the back seat with a lit cigarette in his hand. His whole crotch was ablaze before the driver noticed and woke him up. Instead of putting it out, JR just started singing happy birthday to the driver’s daughter sitting in the front seat.
“I used to have to have five thirties in the morning or I’d start to get sick,” he said.
Then one night, after locking the drug safe and retiring to the living room, Nikki heard one of their baby’s toys squeak from across the apartment. She walked over to the bedroom, “and there was a guy standing there,” she said. “He had a bandana on all the way around his face. He had latex gloves on and a crowbar and a metal pipe.”
They’d forgotten to slide the deadbolt and three men had popped the lock with a credit card. JR came running in but one of the men quickly pinned him to the couch with the crowbar while the other two carried out the safe. Nicki screamed; the men told her to “shut the fuck up.” The baby wailed each night for the next couple months.
In 2010, Nikki took a job at a pain clinic in Beckley that was known as a local pill mill.
“Me and the nurse practitioner alone, we seen a hundred patients alone a day,” she said. “People would just go in there and tell [the doctor] that they wanted 120 thirties, 120 fifteens, and he’d just give them to him.”
Often, the doctor would sign prescriptions from behind closed doors and give them to the nurses to distribute. Sometimes patients didn’t even have to come into the office. JR started paying patients to pick up prescriptions Nikki wrote, giving them forty of the pills for free and keeping the other eighty.
For a couple of years, this all ran smoothly. But then, in two quick strokes, the whole foundation of JR and Nikki’s operation started rotting out. First, Florida made it illegal for people to get prescriptions for opiates with out-of-state IDs. There were still drug dealers they could work through, but the costs – and the stakes – were much higher. Second, the Beckley pain clinic got investigated and Nikki was fired. Just like that, JR said, within a matter of months, “I went from having anything I wanted to not having nothing.”
Without pills, Nikki and JR got desperate quickly. “Your body will just, like, ache and you’ll have, like, these sicknesses,” Nikki said.
JR tried taking a job at Arby’s, but one day, in withdrawal, “the smell of grease, I started…I had to puke,” and he vomited out the drive-thru window. He lost another job after stealing a carton of cigarettes and giving them to his mom, who attempted to return them to get cash for pills.
“It came to the point,” Nikki said, “that we’re not allowed back in Wal-Marts because we stole so much stuff out of them.”
“I walked straight out of Wal-Mart, two days in a row, with $2,500 worth of electronics,” JR said. “I just put it in a buggy and walked out. Second time I got caught.”
“If I made a $200 check, we’d spend $170 of it on drugs in two days and be broke for a week and a half,” Nikki said.
“I stole medicine out of my grandfather’s cabinet after he got knee surgery.”
“I can’t even tell you how many bad checks we wrote.”
Eventually, as restrictions on OxyContin got tighter and tighter in coal country, heroin started filling the gap. It was cheap and it was powerful.
“One time we’d just re-upped and we were with another guy,” Nikki said, recalling a frightful experience. “When I got done I just fell over in the back seat of the car…my face went blue and everything, instantly…the guy that we was with he was on parole and…he got out of the car and picked me up and threw me out into the snow and just left me. By the time the ambulance got there fifteen minutes later, I was ‘dead on arrival.’ They barely had enough time to bring me back.”
“I was giving her CPR when the cops came,” added JR, who had two warrants out for his arrest. He says the police tried to spin attempted murder but he was out on bail in less than a week. The night of his release he wound up “dead on arrival” at the same hospital, from the same batch of heroin.
In September of last year, JR was convicted of cutting down over four hundred feet of telephone cable in order to extract the copper wire for pill money — in the process knocking out phone service to much of the county.
Soon afterwards, they lost custody of their son. They tried to go clean but the drugs were everywhere around them. Finally, in a moment of desperation, they ran away from Beckley, from the life, from the drugs. The next morning, walking on the train tracks, I asked them for directions.
“I hate that I got addicted,” Nikki said after I watched her shoot up in the grass behind the little league field. “I want to quit so bad, but I’d rather have a pill than a place to sleep at night.”
It was around noon on the Fourth of July. A couple kids and their dads had arrived to play ball. JR and I stood up. Nikki finished puking up the potted meat. We shook hands and said goodbye. I have no idea what happened to them next.
I hitched toward Oceana, or “Oxyana” as people call it, then over the next couple days, south toward Welch. Locals lamented how recent carbon regulations put in place by the EPA have sped up the already shrinking coal-mine job market.
“For every coal mining job that goes, there’s ten other jobs that goes with it,” said Bernie Sidebottom of Bernie’s Cole Street Deli in Logan, West Virginia. “I’m 56, been here my whole life and I’ve never before seen it this bad.” Bernie went out of business on August 1st.
Hitching southwest from Bob White, West Virginia, I was picked up by a laid-off coal miner smoking weed in a trucker’s cap. Driving on hairpin turns with country music blasting from his pickup, we got to laughing. He offered me a peanut butter and jelly sandwich but, when we got to his trailer, he said his wife was junk-sick and I should leave.
“Besides,” his wife said, smoking a cigarette and staring me down behind a purple robe in the dimly lit kitchen, “it’s not like we got no bread.”
* * *
Luke Whyte is a writer with a penchant for building data visualizations. Some of his more recent work can befound here.
Even as he approaches old age and his sport falls into decline, this intestines-eating, sorcery-conjuring “Man of Great Power” still dominates the ring.
With a slow and assured swagger that defies his aging body, Edingwe Moto na Ngenge, the most decorated Congolese wrestler of all time, steps into the ring. At about six-foot-six and more than 220 pounds, with a prominent brow, deep-set eyes, a mohawk and a large dragon tattoo across the left side of his chest, he cuts an imposing figure. Edingwe, whose moniker, Moto na Ngenge, translates to Man of Great Power, struts back and forth across the ring with his shoulders thrown back, stamping his feet and contorting his face into grotesque expressions, toying with his opponent and whipping his loyal fans into a frenzy.
It’s January 2016 in Kinshasa, the pulsating capital city in the far west of the vast and volatile Democratic Republic of Congo. Just a year earlier, the radio-trottoir, or pavement radio, as the city’s incessant gossip mill is known, spread word that Edingwe was near death’s door, broke and unable to cover the hefty cost of his prolonged hospital stay, finally turning to God in a last-ditch effort to be saved.
Now, with thousands of spectators filling the lower-level stands of the Tata Raphaël stadium and local television crews set up around the wrestling ring erected in the middle of the soccer field, Edingwe’s got something to prove.
However, it’s his challenger, Mal à l’aise, which translates to Ill at Ease, who attacks first. He takes a dead snake from his trainer at the edge of the ring, wraps it around his neck for a moment, then holds it tight with one hand close to its head and the other at the end of its tail, thrusting it repeatedly and exaggeratedly in the direction of Edingwe. The great champion is momentarily stunned by this act of sorcery, and with his eyes wide in surprise he becomes rooted to the spot, rocking back and forth like a tall tree in the wind.
But Edingwe soon grows tired of this impetuous display, breaks the spell, and with a swift extension of his right arm and a raised, open palm, calls on the spirits of his ancestors. The magical powers they have so long bestowed on him send Mal à l’aise tumbling backward onto the mat, where he lies paralyzed. Edingwe kneels beside his hapless opponent, grasps at his midriff and appears to extract his intestines like long pieces of pink elastic. He holds them aloft and then lowers them into his gaping mouth; as he eats them, blood pours from the corners of his lips onto his chest. A government minister sitting near the ring faints. Mal à l’aise, also unconscious, is covered and carried away.
Edingwe is swiftly escorted from the arena by his entourage before his opponent’s angry supporters seek revenge for such a merciless performance. After just a few minutes, it’s all over.
* * *
The unique and wildly popular Congolese variety of wrestling, which bears some similarities to American professional wrestling, took off in the late 1960s and early ’70s. Around this time, a handsome young man named Kele Kele Lituka became Congo’s first professional wrestler and a household name, defeating European champion Claude Leron and celebrated American wrestler El Greco.
Lituka beat his Western opponents by drawing on wrestling techniques that in fact long preceded the influence of the American school. He incorporated elements of a traditional Congolese fighting style called libanda, which is said to have traveled to Brazil with slaves from the ancient Kingdom of Kongo centuries earlier and served as the genesis for the Brazilian martial art of capoeira. (While elements of the matches are clearly played up for dramatic effect, organizers here, like their American counterparts for a time, have long insisted that nothing is staged.)
“Since the early days of urbanization, there have been public fights in Kinshasa,” says Katrien Pype, Ph.D., a professor of African cultural anthropology at the University of Birmingham in the United Kingdom and at KU Leuven University in Belgium. In the 1950s, when this sizable swath of Central Africa was still a Belgian colony, a style of fighting called mukumbusu emerged. Inspired by the movements of gorillas and incorporating both foreign and African fighting styles, mukumbusu was a “reaction to the other martial arts that were brought in by the colonialists,” Pype says.
In the late 1970s, a young, cocksure fighter from a poor family in Kinshasa’s ramshackle Matete neighborhood stepped into the ring for the first time. A notorious brawler at school who sometimes even came to blows with his teachers, Edingwe, whose real name is Edmond Ngwe Mapima, had already shown promise in the boxing ring. He would quickly leave an indelible mark on Congolese wrestling, introducing the sport to the aspect of magic and sorcery, known locally as fétiche, with its practitioners referred to as féticheurs.
Fétiche is the foundation on which the Congolese manifestation of contemporary wrestling has been built. Tapping into local superstitions and the widespread Congolese belief in traditional magic, mysticism and the spirit world, Edingwe’s mastery of fétiche gave him an insurmountable advantage over his opponents. As Caroline Six wrote in a 2015 article in the French press: “The success of a wrestler in Congo is often not founded on strength, technique or style, but on his capacity to make people believe in his powers of sorcery.” Edingwe is the perfect embodiment of this claim.
Mobutu Sese Seko, the flamboyant, corrupt and ruthless dictator who ruled Congo — which he renamed Zaire — for more than 30 years until his death in 1997, was a great wrestling aficionado. He used the sport as a focal point for what Pype calls his “authenticity politics,” whereby he shunned and in some cases banned cultural practices deemed to be Western and instead promoted a new, African vision of Congolese national belonging.
“During Mobutu’s time, wrestling was promoted as the national sport. There was a lot of financial support and massive state-organized and sponsored events and tournaments,” Pype says. For the first time, Congolese wrestling was also widely televised across the country. This helped Edingwe become the sport’s greatest icon, equal parts feared and revered. But those days were long ago.
* * *
When it rains hard in Matete, as it does most days during Congo’s wet season, the labyrinthine streets and alleyways — many of which are unpaved and untraversable by car — quickly become fast-flowing red-brown rivulets carrying trash and human waste between the buildings. At such times, this overcrowded and notoriously crime-ridden area is unusually quiet; small groups of young boys huddle outside kiosks that sell cigarettes, soft drinks and basic household essentials, seeking shelter beneath the jagged metal overhangs that jut out over the front stoops. Otherwise, the streets are deserted.
Behind a large red metal gate opposite one such kiosk, Edingwe sits silently with a few friends and family members on pink plastic chairs, while a few laborers in tattered overalls work noisily to cover exposed rafters on the roof with sheets of metal. A light breeze gusts through the empty window frame beside them. One day, Edingwe, who says he does not know his age but is likely somewhere in his late 50s, hopes this building will serve as both a new house for his family and a fitting testament to his long and illustrious wrestling career. In his deep, slow drawl, the great champion says, “My only regret is that my parents died poor while I was still too young. I wish they had still been alive to see this when it is complete.”
Edingwe has not had a fight since his famous disembowelment of Mal à l’aise more than a year ago. A few days after the fight, a wildly sensationalist Congolese news site reported that, thanks to a quick visit to both the clinic and a local temple, Mal à l’aise had miraculously survived. However, he complained that he was still experiencing some discomfort in his stomach.
The pavement radio is buzzing with news that despite Edingwe’s now infamous comeback, he is still barely scraping by financially, paying his bills by doing occasional work as an informant for the police in Matete, where he uses his magical powers to pinpoint the location of alleged criminals.
Local journalist Francis Mbala says that wrestling has been hit hard by the political impasse that engulfed the Congolese capital when beleaguered president Joseph Kabila failed to step down at the end of his two-term presidential limit in December 2016. The impasse has thrust the city, and the country, into a new period of uncertainty, crippling the local economy. Sporadic political protests have been met by an increasingly violent state response, leaving scores of protesters dead. Meanwhile, rebel militias have resurfaced in the long-afflicted Kivu provinces in the east of the country, while a bloody guerilla war between the army and anti-government rebels has claimed at least 3,000 lives — with gross human rights abuses alleged on both sides — and forced more than a million people to flee their homes.
“With the current political and economic crisis, there is a severe lack of sponsors for wrestling,” Mbala says. Official wrestling institutions and federations “almost don’t exist in Kinshasa anymore,” he adds, and big wrestling events have inevitably become much less frequent.
But Pype says that the trials and tribulations of Congolese wrestling precede the current political impasse. “During Mobutu’s time, wrestling was the national sport,” she reiterates, “but unfortunately for the wrestlers, the current government hasn’t recognized what the sport and its practitioners could mean to them and to the creation of national cohesion and unity. Mobutu invested a lot more in the promotion of Congolese culture in general.”
Pype insists that wrestling remains an important part of daily life for the Kinois, as Kinshasa’s residents are known, especially for young men in working-class neighborhoods like Matete. For many of these men, wrestlers represent an ideal body image — and they are also emblematic of the possibility of transcending one’s impoverished circumstances.
Edingwe has a more straightforward take on why he hasn’t had a fight in so long: He says that no one is currently up to the challenge. He is not announcing his retirement just yet, but he is already pinning great hope on his eldest son, a 33-year-old who lives and fights in Belgium — and is known as Little Edingwe.
“The powers that I inherited from my grandfather, who was also a wrestler, will gradually be transferred to my son,” Edingwe says. “God has not given these powers to anyone else, so this is what I am counting on. When my son is strong enough, I will stop fighting.”
Other champions of Edingwe’s era agree that the next generation of greats is yet to announce itself in Kinshasa. Mwimba Makiese, who goes by the nickname Texas, shares the sense that the increasing lack of financial incentives has played a role, pushing young working-class men into Kinshasa’s violent street-fighting scene — where they can at least achieve a level of localized fame and notoriety — rather than the official wrestling circuit.
Like Edingwe, Makiese, who claims to have won an impressive 646 out 650 matches in his career, is looking to retire soon, potentially adding to the vacuum. Makiese has long been the leading proponent in Congo of the so-called “classical” American style of wrestling. He has often publicly denounced fétiche wrestling, which he claims has fueled a growing negative narrative that dismisses wrestlers as “brigands.” Makiese is currently training two young wrestlers in the hope that they will fill his considerable shoes and continue to build on his legacy of “clean, technical wrestling,” as he calls it.
Widely known both for his success in the ring and for being the first albino wrestler in Congo, Makiese is also a renowned philanthropist, having created a foundation for Kinshasa’s routinely persecuted and ostracized albino population. Money that Makiese earned from wrestling helped build the foundation, but in recent years he has had to find other means of sustaining it. To that end, he now runs a small shop with his wife.
“Before, I could live solely from wrestling. I built my house with money from wrestling. I educated my kids with money from wrestling. Now, things have changed,” Makiese says. “But I’m like a chameleon — I’ll always find a way to adapt,” he adds.
Back in Matete, Edingwe seems less willing to adapt. Wrestling, after all, is his calling. He believes it was preordained. He believes that only he can save Congolese wrestling from the slump it is currently experiencing.
As if to show his readiness to shoulder this considerable burden, Edingwe goes to get his wrestling attire — high socks, lace-up boots and tight black spandex shorts — from the small main house behind the unfinished outbuilding. When he returns, the short walk seems to have put considerable strain on his body. He struggles to get up the single step back into the outbuilding and has to use the wall for support. He breathes heavily as he slowly and laboriously lowers himself back into his chair, where a young male relative helps him lace up his boots. It’s hard to imagine that just over a year ago, Edingwe was proudly strutting back and forth across the ring like a peacock, in front of his adoring fans, as he prepared to disembowel Mal à l’aise.
But as soon as he is dressed, Edingwe transforms. His back straightens, his shoulders rise; legs slightly akimbo, he throws a few slow-motion air punches left and then right across his body while contorting his face into grimaces, the veins in his neck bulging.
Two of Edingwe’s daughters can’t help giggling at this spectacle. In a mock-aggressive tone, he commands them to come and stand beside him, where he loops an arm over each of their shoulders. The girls grow suddenly shy beside Edingwe’s enormous frame and will not meet his eyes. Imperceptible to them, a slight smile crosses their father’s lips.
What it’s like to live with a disorder that means sometimes I can’t even recognize my own family members—and why I’m not keeping it a secret any longer.
When there was a familiar knock on our front door around eight at night on a Friday, I knew it was my dad. But then my mom, in her oversized cat sweater and baggy jeans, removed the door chain from its lock and opened the door, revealing a tall, slender bald man with no facial hair.
“Who’s that?” I asked, in my blunt six-year-old way.
“It’s Daddy?” My mom’s voice sounded uncertain for a minute, but then she laughed. “He shaved his head!”
I had never seen my dad without his full, wavy dark brown locks before. They were unlike my mom’s pin-straight light brown long bob with face framing bangs. I looked him over. My dad was still wearing a long-sleeved red plaid shirt, blue jeans with a belt, and heavy black boots. He had a pair of sunglasses sticking out of his pocket.
“Pumpkin, I shaved my hair.” That was my dad’s voice and he always called me pumpkin, so I started laughing, equal parts nervous and relieved. “Are you excited to spend the weekend together?” It took me a few moments to warm up to the idea that this was my dad, but then I launched into a list of things I wanted to do with him for the next two days, and watching both my parents smile at me reassured me that everything would be okay. My parents didn’t notice that my panic was unusual at the time, because it’s common for young kids to learn about permanence when someone drastically changes their hair. But although the panic subsided in the moment, I knew the feeling was probably related to how unsettled I felt when I was looking for my mom at the grocery store or when a neighborhood kid waved at me from the playground.
When I was around seven or eight, we learned that I have mild prosopagnosia, also known as “face blindness.” Prosopagnosia appears to be different from other neurological memory problems because it doesn’t cause any other issues with memory and isn’t always caused by brain damage — as in my case, it can be developmental and genetic. I’ve had difficulty recognizing almost everyone in my life from time to time, whether it’s someone famous, like Harrison Ford or Taylor Swift, or someone I know intimately, like my best friend or my own dad.
My face blindness comes with a set of challenges, including the surge of panic I feel when I have to search for someone I know in a large crowd. There’s a deep social stigma attached to not recognizing someone that you’re supposed to know, so I’m often too afraid to admit that I struggle with this, which leaves me vulnerable every time I’m not positive whether or not I recognize someone.
Brad Duchaine, an associate professor in the department of psychological and brain sciences at Dartmouth College who is on staff at the Prosopagnosia Research Centers, says thatface blindness can cause social difficulty, particularly because people are often offended when you don’t recognize them. He adds, “It also causes workplace difficulties. If you fail to recognize your boss in the elevator, it’s not going to be good for your career.” When I worked in a mid-sized office with about 150 coworkers, daily interactions like mornings, meetings, and passing people when I stood up from my desk in our open office were hell. When I was preparing my ahi tuna salad at lunchtime in the kitchen, trying not to stare at the redhead man next to me, a flash of panic washed over me when he looked my way. Did I know him? He wasn’t in the small social media and publicity department with me; I’d already memorized the clothing, hair, body language, posture, and voices of everyone on our team. When in doubt, I never explicitly introduce myself or say, “Hey, it’s nice to meet you.” Instead, I opened with, “That looks delicious,” when he removed his croissant from the microwave, searching for signs that he recognized me on his face. Other people’s eyes lit up and their expressions became more trusting when they recognized me, even more so when we were intimately familiar, and I look for those cues during interactions where I can’t recognize someone.
I silently begged that I hadn’t said the wrong thing, that he wasn’t a complete stranger who would find my comment off-putting. I never knew how conversational to be with people if I couldn’t recognize them. Asking someone about their weekend felt reserved for coworkers I had interacted with more than a handful of times, but I often wasn’t aware when I’d crossed that threshold.
“Thanks, I got it from South End Buttery down the street. If you haven’t been yet, you should check it out,” he said. Sounds like we haven’t talked before, but he knows I’m fairly new here, I thought, trying to push away my fear. He wouldn’t realize I didn’t recognize him if I didn’t make it obvious.
I know how hard it can be to be open about your differences, both inside and outside the workplace. So I’ve kept my face blindness a secret with the help of some adaptive strategies I keep up my sleeve for moments of awkward interaction, like carefully picking my opening lines, and memorizing hairstyles. Technology has saved me on a regular basis since social media became popular in the mid-2000s, and even more so with smartphones. Before I meet up with someone, especially if I’m likely not to recognize them because they don’t have a unique identifier (like a red beard, a wheelchair, pink hair, or a mohawk), I can study photos of them saved to my phone or posted to their Facebook. I can look for the kind of clothes they might be wearing, how their hair is currently styled, if they tend to smile without teeth.
Duchaine says that most prosopagnosics have alternate systems for recognition. Many study Facebook and photos, while some are even hoping facial recognition apps like the one developed for Google Glass will become widespread. A common tactic (which I also use) is making sure to arrive at a meeting spot before anyone else so we won’t be the one picking out a singular face. People also tend to specialize in particular features. “One guy I worked with focused on people’s jeans,” says Duchaine. “In the town he grew up in, everyone wore the same jeans every day.”
I often rely on hair as my main recognition cue, which is why I’ve mistaken other tall, bald men wearing sunglasses for my own father (never enough to actually say, “Hey, Dad!” to them, thankfully, but I’ve walked up to quite a few bald strangers), and why I didn’t recognize him when he first went bald.
Hair, clothing, and other cues are also central to how I identify myself. I don’t always instantly recognize myself in a passing mirror or a photo, particularly if I’m wearing gym clothing or I’m wearing my hair up, since those are so far removed from my daily look. During my senior year of high school, when I cut eight inches off my hair to donate to Locks of Love, and chopped the rest into a pixie cut, seeing myself in the mirror or a selfie actually made me do a double-take. I hadn’t realized that my signature face-framing hair and blunt bangs were how I recognized myself, and I couldn’t see my reflection as me without them. And more than that, my hair is central to my identity. My mom, who died when I was a kid, wore her hair the same way I do — and without that hairstyle, when I look in the mirror, I don’t see what other people are always saying: “You look just like your mom.” I can’t remember my mom’s face, because I don’t remember anyone’s, but I don’t want to lose the little details I do remember about her, like her refusal to wear makeup, her jean jacket, her oversized green Melrose firefighters’ T-shirt, or her blunt brown bangs hanging above her light blue eyes.
I disliked the change so much that I eventually bought a wig and extensions, and resolved to never change my hair again.
* * *
When I was an undergrad in college, I met the only other person who has ever admitted to me that they have face blindness. We were talking about horror movies when my friend, who spends more time during our regular movie marathons making mile-a-minute jokes than analyzing the plot, said, “I can’t watch movies with a lot of characters because I can’t tell anyone apart. The villain will come on screen and I’ll be like, ‘Who’s that?’ and everyone else will be like, ‘That’s the killer, Jon!’” He and I laughed for almost 15 minutes until we had tears streaming down our cheeks.
A few years later, I came across Holding Up the Universe, by Jennifer Niven, and Bone Gap, by Laura Ruby, both novels with prosopagnosic main characters. After reading Holding Up the Universe, I told my girlfriend — who has never heard the inner monologues of panic whenever we’re out at a mall and I lose track of her — how close to reality the protagonist’s daily life is, with the exception that his face blindness is more severe than mine.
Bone Gap was a book club pick at my workplace, and when a coworker brought up how interesting the condition was and that she’d never heard of it, I was itching to say, “Actually, I have it. I wouldn’t recognize any of you outside this office.” I was dying to tell someone that the reason I avoid office jobs with a large staff is how stressful it is trying to figure out if I’ve introduced myself to someone (unless it’s the one guy with a long black pony tail or the woman who wears printed hijabs). But as my coworkers talked about how hard it must be for someone to live with face blindness, I clammed up and kept my mouth shut, not wanting to cross the line from professional into too personal and risk alienating myself.
I sat alone at lunch for half of eighth grade after the school circulated that I was bisexual, and what I love most about my adult life is that it seems I’ve finally escaped that. Every time I’ve revealed something that makes me different — my queerness, the physical disability that I use a lavender cane for — people use it as grounds to harass and ostracize me, or turn me into a sideshow with deeply personal questions aimed at their own consumption and not my comfort. How do I have sex with my partner? What were some ways I was left out as a kid with a disability? Could I play with other kids on the playground? I know people would ask these kinds of questions about my face blindness; they would poke and prod it until they were satisfied. So I’ve always kept it to myself.
I hit my breaking point a couple of weeks ago when my cousin visited from Texas. We’re closely related, since her mom was my mom’s sister and her dad was my dad’s brother, and we look alike. But when she asked me to get dinner with her friends and her at Hooters, I panicked. I got to the restaurant right at seven, wondering: Was she inside yet? Would I see her if I walked around the restaurant, or would I be caught stopping at each individual table, studying its occupants as they awkwardly chowed down on chicken wings? I called her three times to no avail before finally asking my girlfriend if she could take a quick walk around inside, where she quickly spotted Nicole.
“You didn’t answer your phone,” I said to my cousin with a slight hard edge to my voice, looking around the noisy, packed restaurant. There was no way I would have spotted her in this crowd. I thought that I had plans for every contingency, like calling someone on the phone to discern their location — but I had failed. What if my girlfriend wasn’t there to check for Nicole for me? Would I have gotten in my car and driven home, hungry and missing out on a night of her company? Would I, as an adult, have gone to the wait staff and asked them to announce Nicole’s name over the loudspeaker like she was my five-year-old child, embarrassing myself in the process? “I’m not mad at you, but you should have at least told me you were here.”
“I’m so sorry, my phone is in my bag.” Nicole pulled it out to demonstrate and waved in the direction of her other friends at the table. “We were talking and I didn’t hear it ringing. It’s loud in here. You could have just come in and looked for me. I’ve been here since seven.” This wasn’t a big deal to her. She couldn’t see how frantic I felt at the thought of scanning faces to try and determine if I knew someone. That was how the world looked in my eyes, like a sea of blank faces, each ready to condemn me if I couldn’t distinguish them from what looked like an identical face next to theirs.
“You should have just texted me at least once to say, ‘I’m here.’” I was frustrated; not at Nicole, although I wished she’d had the forethought to realize it was past seven and check to see if I’d called her.
As we were moving to a bigger table to accommodate our late arrival, Nicole continued apologizing for not checking her phone. She shouldn’t apologize without knowing what the real problem was, I thought.
“I have face blindness,” I admitted to her, and this was the first she’d heard of it. My heart raced in my chest. I was still afraid she would ask me detailed personal questions or simply not believe me. I was also born without a sense of smell, and throughout my life, I’ve been met with immediate disbelief when I tell people; they think it’s impossible that I can taste and enjoy food but I can’t smell anything at all, whether it’s savory or disarming.
As I explained what face blindness is to my cousin, my heart stopped pumping so fast. She was asking polite follow-up questions because she wanted to understand, not to mock me or put me on trial for experiencing life differently. “I don’t think I would have found you in here unless you texted me to say, ‘I’m in the back of the restaurant, booth near the window.’” I recounted all the times I’d asked her where she was sitting if we were meeting in public, and she instantly remembered telling me exactly what table number she was sitting at so I could approach wait staff and be directed to her.
“I had no idea,” Nicole said. “I swear I’ll check my phone next time so you won’t have to worry.” She’ll never know what it feels like to wander through the tables and booths at a restaurant, searching for a familiar face and making eye contact with parties who want to remain undisturbed, but she’s willing to accept that I know that feeling.
The next day, she wore a bright lime green skirt and printed shirt with swans on it when we met at the Boston seaport. “My phone is going to die,” she texted me thoughtfully, as she described her outfit in detail. “I’ll be at the docks around 6:30.”
Sure enough, as soon as I noticed a flash of lime green among the crowd, I screamed her name and she turned.
I had admitted my biggest weakness, and the world didn’t fall apart. My cousin accommodated me. She wore something noticeable and made sure to meet me somewhere visible. She didn’t prod me for a diagnosis or medical details, and it was obvious she believed me, even though our abilities differ.
Her lime green tennis skirt told me something I should have known years ago: It’s okay to “come out” as face blind. So what if I thought Daenerys from “Game of Thrones” and Legolas from “The Lord of the Rings” were the same character? That just gives me dozens of inside jokes with the people who know I have a facial recognition deficit, but love me anyway.
After a broken engagement, my daughter was just one more millennial moving back into her childhood bedroom. And I was one more aging parent feeling guilty for wanting my humble home to myself.
When I saw my daughter’s car in our driveway I wanted to run the other way — away from my peaceful home, our empty nest that was about to be invaded.
Instead, I braced for her entrance. Rachel, 32, the oldest of Julia’s and my three children, had moved out long ago, like her two brothers. But hours earlier, she had broke off her engagement with her boyfriend of two years. Now, here she was with a car full of boxes stuffed with books, kitchenware, potted plants and suitcases.
She walked in to the kitchen, erupting into sobs. I wrapped my arms around her, unsure how else to console her. I wanted to say that everything would be okay, but knew from past stumbles she would cry harder, as if to ask how I could be so clueless. Didn’t I get what she was going through? I stood quietly, holding her, as she cried on.
“I’m sorry,” I finally said.
She cried some more, like when she was a little kid, longer than I expected, long enough that I felt my patience being tested.
“Can you help empty my car?” she finally asked.
“Sure,” I said, in my most comforting voice, relieved, though dying to learn what the hell had happened. But I knew she would tell Julia and me soon enough, so I kept my mouth shut. Rachel opened the back of her Subaru station wagon. My eyes bulged, stunned at how much stuff she’d crammed in.
This is going to kill my back, I thought as she pulled boxes out, dropping them haphazardly in the middle of the driveway, on the lawn, anywhere. I lifted a suitcase out. It was so heavy; did she stuff it with kettle bells?
“Don’t worry. I’ll bring them up to my room,” she said matter-of-factly, surveying the mounds of accumulations.
When? I thought sarcastically. I know my daughter. If I didn’t bring them in, all this stuff would languish outside for days. What if it rains tonight? Has she thought of that? But another voice reminded me that my job was to welcome her home with an open heart, without judgment, no matter what the circumstances.
I worried it was too late for that. Resentment was already filtering down my gut: My daughter was moving back with no checkout date on the calendar. Over the past several years since our youngest moved out, I’d grown to relish being an empty nester. Life was simpler, a new brand of fun with just Julia and me.
Not that we didn’t love our kids, their visits, or ours to wherever they were calling home. We did. We just also believed that at a certain age, our kids needed to grow up and move out, no matter how much we’d cherished our years all together under one roof.
* * *
Like her brothers, Rachel always appreciated my humor. “Don’t egg him on,” Julia would say, annoyed when I got going with my shtick, riffing on everyday incidents. We watched reruns of “Seinfeld” together, and Rachel and I loved playing with words. She laughed and laughed once when I pointed out that the word “ridiculous” ought to be “redunkulis.”
“Now that’s ridiculous,” I improvised.
And we shared the emotions a good out-loud read can deliver. “Are you crying or laughing?” she asked once when I could barely finish reading a poignant newspaper column to her.
“Both,” I laughed, wiping tears from my eyes.
I also tried to impress on my kids the sacred moments in everyday life. After too much partying in the dorms her freshman year of college, Rachel lived alone off campus the next year, a growing experience though a lonely one. That spring, I flew out to help her move out of her apartment. Before we drove off, I told her to go back into the empty apartment one last time.
“Spend a few minutes. Reflect on what you’ve learned. What it’s been like. Go room to room. Take your time,” I said. “Then we’ll leave.”
She returned a few minutes later, teary-eyed and grateful for the ritual.
Rachel’s move home felt like one step backwards, compounded by how her healing process rubbed me. She lived not only out of her old bedroom her first month home, but also her brother’s, because she wouldn’t sleep in her bed, which she and her now-ex-fiancé, Noah, had slept in when they’d stay over.
At night, she burned Palo Santo incense sticks to help “purify the energy.” The scent seeped into the hall, annoying me as I passed her closed door, feeling like the vanguard of Burning Man had moved into the neighborhood.
Rachel sought out all kinds of healers to help her process the breakup and her future. She saw a life coach, a shaman, a psychic, a tarot-card reader and an astrologist. She did somatic experiencing and neuro-feedback.
Through high school and even in college, Rachel never dated; instead she clung to the safety of a group of friends. After college, she tried online-dating services like OkCupid and JDate, but none of those encounters jelled. When I heard she was seeing Noah, a guy she’d known since middle school, I was surprised. I hardly knew him, but hadn’t she dismissed him as too flaky? Was she settling too easily?
A year after their first date, they moved in together. I had to admit they seemed great together. They got each other’s idiosyncrasies. He was kind to her, and to Julia and me. He was charming, passionate about his work, and often told me about cool innovations, foods or social movements he’d read about. But he didn’t want kids.
* * *
Rachel and I were hiking our favorite trail, past stands of red maples, oaks and hickories, a glistening reservoir to our left, a blue sky above. Mostly she talked; I commented. Big topics: their career plans, where they would live, finances, if and when they might get a dog.
“What about when you have kids?” I asked at a moment when the question felt relevant.
“Noah doesn’t want them,” she said, like it was a closed case, a tone that surprised me.
“Whoa! Really?” I asked, stunned.
“Well,” she said pausing, without a trace of regret in her voice, “if it means not being with Noah, well, I guess it’s no kids,” she said. I felt sadness rubbing against my heart. Was she so willing to give up that desire? It didn’t compute. She loved playing with kids, had always talked about one day having them.
I let it go as we hiked on, but later I felt regret. I’m at that age when friends are having grandchildren. “There’s nothing like it,” they say, brimming. When I think about it, I get this image of lifting a little one onto my lap, reading a picture book together, feeling the warmth of a snuggle. I imagine I’d be a great grandfather.
But it was out of my control, I told myself. So what if my vision failed to mesh with her reality. Life takes twists and turns. Hadn’t I disappointed my father by not going into the family business he so wanted me to join? She had to make her own decisions.
More importantly, Rachel looked happy. We’d meet them for dinner, have them over. Noah would stop by if he was in the neighborhood. We’d hug hellos and goodbyes. He came for Thanksgiving along with his parents. And when we took a big family vacation with our three kids, including our middle son’s fiancée, we invited Noah to join us. He was becoming part of the family.
Then he surprised us, and Rachel, by proposing to her during that vacation on the beach — swept away, I thought, with all the love our family imbued. When he made the announcement that night over drinks, everyone leapt out of their chairs and hugged. Except me. I couldn’t get out of my low-slung beach chair, as if a gravitational truth was holding me down. No one noticed by the time I managed to stand, toast and hug the newly-engaged couple. Nine months later, they nailed down venue details for a wedding a year off, but they didn’t sign a contract.
Then one early weekday morning, after getting my blood drawn for a routine cholesterol screening, I climbed up the stairs to check on Julia, sitting in bed, reading the paper, drinking her coffee, and waiting for me.
“Sit down,” she said. “Rachel just called.” Those were ominous words, I thought. What was wrong? Rachel never called this early. Had their apartment been broken into? I had no idea, but I felt dread.
“She and Noah broke up,” Julia said, a stunner I had not seen coming. “She’s packing her stuff and coming home.”
“What! Are you kidding me?”
Over the next few days and weeks, Rachel leaked information about what happened. Yes, they often were the happy couple they looked like, but each had deep concerns too painful to admit to one another. Until they finally felt compelled to share them, forcing the realization that they weren’t meant for each other. It had been bubbling, she told us. That morning of the breakup had started early. Neither of them could sleep. So they got up and started talking and talking in the morning darkness. By daybreak, it had hit them both. They weren’t getting married. She returned his engagement ring, and over the course of several hours, moved out of their apartment and returned home.
I knew I needed to act the role of a father whose daughter has undergone loss, but my default position was too farsighted. All I saw was her move encroaching on my empty-nester life.
I loved my new relationship with the woman I married thirty-five years earlier, now without the demands of raising kids. We would get dinner out; catch a movie or play, knowing our children could handle the challenges of growing into adulthood. We talked openly about how we felt, without being on guard. And with no kids in the bedrooms next door, we didn’t have to be discreet about our own amorous adventures.
It took months to get over my resentment of Rachel’s move home — until one night when I noticed the hard-edged feeling softening when she arrived home after a few days away. When work required her to be out of town, she would stay with friends. Earlier that day, she texted us to say she would be home for dinner. I felt delight, like company dropping by, as I rushed to whip up a meal I knew she would love. More than that, I looked forward to catching up on her insights. And that’s when I got that this was her way of moving forward: talking with friends on the phone for hours, her New Age therapies, even the mindfulness-meditation course she was taking. Far from moping or feeling victimized about the circumstances she was dealt, she was handling them.
To my relief, she moved her boxes, suitcases and plants out of the dining room, hallway, mudroom and kitchen and into her room and the attic, though I still bumped into signs of the breakup now and then. Up in the attic, her unworn wedding dress, zipped in a garment bag, hung like unclaimed luggage. She had bought it at a sample sale, too good to pass up. Another time, I happened on a Shutterfly picture-book our kids had made of that big family vacation. It included photos of the then-newly engaged couple.
Eventually, she made a plan with a move-out date, still several months away. And we gradually found ourselves cultivating a nourishing routine. Rachel would arrive home, join us in our basement den, where Julia and I were catching up on recorded television shows. We’d hit pause, and an hour would go by as we talked. Or I’d be up in the kitchen, chopping vegetables or grilling chicken. Rachel would come in and join me for a glass of wine as she shared reflections or thoughts about life. By then, months into life with our adult daughter, I finally hit my stride with my current role: to be there for her, to listen to the inevitable plot-twists of her life, challenges and triumphs; in short, to continue to love her unconditionally. I did so the way it came naturally as in times past: playing music cuts I thought she’d like, sharing great reads with her, passing on emails I knew would touch her.
As head family cook, I made sure plenty of meals were at the ready for my gluten-free daughter. But mostly, I grew to appreciate her time at home, knowing she’d be gone before we knew it.
* * *
Leonard Felson is a Hartford, Connecticut-based freelance journalist who writes personal essays and features about the struggles of change in the lives of people and communities. Follow him at leonardfelson.com or on Twitter @leonardfelson.
Kassia Rico is an illustrator currently based in Los Angeles. She earned her BFA at the Rhode Island School of Design (RISD) where she found her interest investigating the links between the human and non-human, especially their interdependencies. Follow her on Instagram @kassiarico.
My analyst and I grew more intimately connected each week of treatment...but I never saw this indecent proposal coming.
It’s the waning moments of my fourth session with a new therapist. I’m holding back — and she knows it. My entire body feels tense, not ideal for the setting. I try to relax, but the plush leather couch crumples under me when I shift, making the movements extraordinary. I’ve barely looked into my therapist’s blue eyes at all, and yet I think the hour has gone very well. Of course it has. On the surface, when the patient has been highly selective of the discussion topics, therapy always resembles a friendly get-together.
“Well,” my therapist, Lori, says, the millisecond after I become certain our time is up and I might be in the clear. “I don’t think I should let you go until we’ve at least touched on what was put out there at the end of last week’s session.”
I so supremely wanted this not to come up. My eyelids tighten, my mouth puckers to the left, and my head tilts, as though I’m asking her to clarify.
“When you said you’re attracted to me,” she continues.
“Oh, yeah,” I say. “That.”
Back in session three Lori was trying to build my self-esteem, the lack of which is one of the reasons I’m in treatment. Within the confines of my family, I’ve always been the biggest target of ridicule. We all throw verbal darts around as though we’re engaged in a massive, drunken tournament at a bar, but the most poisonous ones seem to hit me the most often, admittedly somewhat a consequence of my own sensitivity. I’ve been told it was historically all part of an effort to toughen me up, but instead I was filled with towering doubts about my own worth. And since 2012, when I gave up a stable, tenured teaching career for the wildly inconsistent life of a freelance writer, I’ve had great difficulty trusting my own instincts and capabilities. I told Lori that I wish I was better at dealing with life’s daily struggles instead of constantly wondering if I’ll be able to wade through the thick.
She quickly and convincingly pointed out that I work rather hard and am, ultimately, paying my bills on time, that I have friends, an appreciation for arts and culture, and so on. In short, I am, in fact, strong, responsible and “pretty good at life.”
Then Lori heightened the discussion a bit. “I also feel that it is your sensitivity that makes you a great catch out there in the dating world,” she said, to which I involuntarily smiled, blushed and quickly buried my chin in my chest. I was too insecure and too single to handle such a compliment from a beautiful woman.
“Why are you reacting that way?” Lori asked.
I shrugged my shoulders, only half looking up.
“Is it because you’re attracted to me?”
I laughed a little, uncomfortably. “How did you know?”
She gently explained she could tell the day I walked into her office for the first time, after I flashed a bright smile and casually asked where she was from.
Now, a week after dropping that bomb, Lori asks, “So, why haven’t we talked about it?”
“I was hoping to avoid it, I suppose.” I tell her the whole notion of having the hots for a therapist is such a sizable cliché that I was embarrassed to admit it. “For Christ’s sake,” I say, throwing my hands up, “Tony Soprano even fell in love with his therapist.”
Lori snorts, rolls her eyes. “I knew you were going to say that.”
I smile, shake my head and look around the room, denying acceptance of my own ridiculous reality.
“It’s OK,” Lori says, grinning. “We can talk about this in here.”
I look again at her stark blue eyes, prevalent under dark brown bangs, the rest of her hair reaching the top of her chest, which is hugged nicely by a fitted white tee under an open button-down. She jogs often, I’d come to find out, which explains her petite figure and ability to probably pull off just about any outfit of her choosing.
I still can’t speak, so she takes over.
“Do you think you’re the first client that’s been attracted to their therapist?” she asks rhetorically. “I’ve had other clients openly discuss their feelings, even their sexual fantasies involving me.”
“What?” I cackle, beginning to feel as though I’ve moseyed onto the set of a porno.
“It’s true,” she says, acknowledging her desk. “What’s yours? Do you bend me over and take me from behind?”
“If that’s what you’re thinking, it’s OK,” she goes on, earnestly, explaining that she’s discussed sexual scenarios with her clients before so as to “normalize” the behavior and not have them feel their own thoughts are unnatural. By showing the patient a level of acceptance, she hopes to facilitate a more comfortable atmosphere for “the work” — her painfully accurate pseudonym for psychotherapy.
I take a second to let the red flow out of my face, and ponder what she said. I’m a little unsure about this whole technique, but the more I think about it, the more it makes sense. So I go home, incredibly turned on and completely unashamed.
* * *
One of the great breakthroughs I’ve had in the thirteen months since I began seeing Lori (who agreed to participate in this article, but requested that her full name not be published) is a new ability to accept the existence of dualities in life. For instance, I’ve always had a tremendous sense of pride that, if it doesn’t straddle the line of arrogance, certainly dives into that hemisphere from time to time. I’m great at seeing flaws in others and propping myself up above them by smugly observing my character strengths. I’ve never liked that about myself, but the harder concept to grasp is the fact that I can be so egotistical while also stricken with such vast quantities of insecurity.
In treatment I came to realize that all people have contradictions to their personalities. There’s the insanely smart guy who can’t remotely begin to navigate a common social situation, the charitable girl who devotes all her time to helping strangers, but won’t confront issues in her own personal relationships. In my case, my extreme sensitivity can make me feel fabulous about the aspects of myself that I somehow know are good (my artistic tastes) and cause deep hatred of those traits I happen to loathe (the thirty pounds I could stand to lose).
My next session with Lori is productive. We speak about relationships I’ve formed with friends and lovers, and how my family may have informed those interactions. One constant is that I put crudely high expectations on others, mirroring those thrown upon me as a kid. I’m angered when people don’t meet those expectations, and absolutely devastated when I don’t reach them. Lori points out that it must be “exhausting trying to be so perfect all the time.” I am much more comfortable than I was the week prior, and can feel myself being more candid. I’m relieved that the whole being-attracted-to-my-therapist thing doesn’t come up.
Then, a week later, Lori mentions it, and I become tense again.
“I thought I’d be able to move past it,” I say, adding, “We aired it out, and it’s fine.”
As definitive as I’m trying to sound, Lori is just as defiant.
“I’m glad you feel that way,” she begins, “but I think you owe yourself some kudos. This kind of therapy,” she shares, “isn’t something just anyone can take on.” Such honest discussion doesn’t simply happen, it takes tremendous guts, and Lori can see that I am dealing with it relatively well, so I should praise my own efforts.
“Shit, we both should be proud of ourselves,” she says. “It’s not easy on the therapist either, you know.”
“Because talking openly about sex is risky at any time, much less with a client.” She explains that therapists are warned any semblance of intimacy can be easily misconstrued. “We learn in our training to not personally disclose, for example,” she says, but adds that, occasionally, transparency can be helpful.
“Still, with you,” she continues, “until I raised the question, I didn’t know for sure that you would go with it; for all I knew you’d run out of here and never come back to risk being so uncomfortable again.”
She’s building my confidence more, and I’m learning that I play a much bigger role in how my life is conducted than I often realize. My treatment wouldn’t be happening if I weren’t enabling it.
Then she says, “And don’t think it’s not nice for me to hear that a guy like you thinks I’m beautiful.”
Crippled by the eroticism of the moment, and combined with the prevailing notion that no woman this stunning could ever be romantically interested in me, I flounder through words that resemble, “Wait…what?”
“If we were somehow at a bar together, and you came over and talked to me,” she says, then flips her palms up innocently, “who knows?”
I laugh again and tell her there’d be almost no chance of me approaching her because I’d never feel like I had a shot in hell.
“Well, that’s not the circumstances we’re in,” she says. “But you might. Who knows?”
I’m confused — Is she really attracted to me or is this some psychotherapeutic ruse? I’m frustrated — I told her I didn’t really want to talk about it. Shouldn’t she be more sensitive to my wants here? I’m angry — Is she getting an ego boost out of this? Most of all, I don’t know what the next step is — Am I about to experience the hottest thing that’s ever happened to a straight male since the vagina was invented?
There were two ways to find out:
1) Discontinue the therapy, wait for her outside her office every day, follow her to a hypothetical happy hour and ask her out, or
2) Keep going to therapy.
* * *
A week later, I’m physically in the meeting room with Lori, but mentally I haven’t left the recesses of my mind.
“Where are you today?” she asks, probably noticing my eyes roving around the room.
“I don’t know.”
“Are you still grappling with the sexual tension between us?”
Here we go again.
“Yes,” I say, with a bit of an edge in my voice, “and I don’t know what to do about it.”
Lori, ever intently, peers into my eyes, wrinkles her mouth and slightly shakes her head.
“Do you want to have sex with me?” she asks.
We both know the answer to that question. All I can do is stare back.
“Let’s have sex,” she announces. “Right here, right now.”
“What?” I respond, flustered.
“Let’s go!” she says a little louder, opening up her arms and looking around as if to say the office is now our playground, and, oh, the rollicking fun we’d have mixing bodily fluids.
“No,” I tell her, “You don’t mean that.”
“What if I do?” she shoots back. “Would you have sex with me, now, in this office?”
“Of course not.”
“Why ‘of course not’? How do I know for sure that you won’t take me if I offer myself to you?”
“I wouldn’t do that.”
“That’s what I thought,” she says, and tension in the room decomposes. “Mike, I don’t feel that you would do something that you think is truly not in our best interest, which is exactly why I just gave you the choice.”
Her offer was a lesson in empowerment, helping me prove that I have an innate ability to make the right choices, even if I’d so desperately prefer to make the wrong one.
I see what she means. I’m awfully proud of myself, and it’s OK to be in this instance. I’m gaining trust in myself, and confidence to boot. But, as the dualities of life dictate, I’m successfully doing “the work” with a daring therapist, while at the same time not entirely convinced she isn’t in need of an ethical scrubbing.
* * *
I don’t have another session with Lori for nearly three months, because she took a personal leave from her place of employment. When our sessions finally resumed, I could not wait to tell her about my budding relationship with Shauna.
Ten minutes into my first date with Shauna — right about the time she got up from her bar stool and said she was “going to the can” — I knew she would, at the very least, be someone I was going to invest significant time in. She was as easy to talk to as any girl I’d ever been with, and I found myself at ease. Plans happened magically without anxiety-inducing, twenty-four-hour waits between texts. Her quick wit kept me entertained, and I could tell by the way she so seriously spoke about dancing, her chosen profession, that she is passionate about the art form and mighty talented too. Shauna is beautiful, with flawless hazel eyes and straight dark hair, spunky bangs and a bob that matches her always-upbeat character. She is a snazzy dresser and enjoys a glass of whiskey with a side of fried pickles and good conversation as much as I do.
Things escalated quickly, but very comfortably, and since we’d both been in our fair share of relationships, we knew the true power of honesty and openness. So upon the precipice of my return to therapy I told Shauna about Lori, and admitted to having mixed feelings about what I was getting back into. I told her I was at least moderately uncertain if my mental health was Lori’s number-one concern since she always seemed to find the time to mention my attraction to her.
The first two sessions of my therapeutic reboot had gone great. Lori appeared genuinely thrilled that I was dating Shauna and could see how happy I was. I wasn’t overwhelmed with sexual tension in the new meeting room, though it wasn’t actually spoken about, and in the back of my mind I knew it was just a matter of time before it would start to affect my ability to disclose my thoughts to Lori again.
Then, while attempting to ingratiate myself with my new girlfriend’s cat by spooning food onto his tiny dish on the kitchen floor, I hear my phone ding from inside the living room.
“You got a text, babe,” Shauna says. “It’s from Lori.”
“‘I’m so impressed with you and the work you’re doing…’” Shauna reads off my phone from inside the living room, inquisitively, and not happily. I stuff the cat food back into the Tupperware and toss it into the refrigerator. I make my way into the living room, angry at myself for not changing the settings on my new iPhone to disallow text previews on the locked screen. Shauna’s walking too, and we meet near the kitchen door. “What’s this?” she says, holding up the phone. “Your therapist texts you?”
I take the phone from Shauna and say the most obvious, cliché-sounding thing: “It’s not what it seems.”
As I text back a curt “thanks,” Shauna tells me she’s going to ask her sister, a therapist herself, if it’s OK to text patients.
“Don’t do that.” I say, a little more emphatically. “I promise, this is nothing to be worried about. We’re not doing anything wrong.” I explain that Lori’s just trying to build my self-esteem.
“The only reason I’m even bringing this up is because you said you weren’t sure about her in the first place,” Shauna reminds me. I can tell she regrets looking at my phone without my permission, but I completely understand her feelings.
At my next session I tell Lori that Shauna saw her text and wasn’t thrilled about it.
“She probably feels cheated on to some degree,” Lori says. “A relationship between a therapist and a patient can oftentimes seem much more intimate than the one between a romantic couple.”
Lori goes on to point out that the reason she feels we can exchange texts, blurring the lines between patient/doctor boundaries — a hottopic in the psychotherapy world these days — is because she trusts that I’ll respect her space and privacy. “You’ve proven that much to me,” she says.
On my walk home, instead of being angry at Lori, I understand her thinking behind the text. But I’m also nervous about how Lori and Shauna can ever coexist in my life.
Isn’t therapy supposed to ameliorate my anxiety?
* * *
A week later, Lori begins our session by handing me a printout explaining the psychotherapeutic term “erotic transference” written by Raymond Lloyd Richmond, PhD. It says that erotic transference is the patient’s sense that love is being exchanged between him or herself and the therapist — the exact sensation I was experiencing with Lori, of which she was astutely aware.
According to Richmond, one of the primary reasons people seek therapy is because “something was lacking in their childhood family life,” perhaps “unconditional nurturing guidance and protection.” Upon feeling “noticed” and “understood” by a qualified therapist, sometimes a patient can be “intoxicated” by their therapist’s approval of them. A patient may in turn contemplate that a love is blossoming between them, and, in fact, it sort of is.
From an ethical standpoint, Richmond argues all therapists are “bound” to love their patients, for therapists are committed to willing “the good of all clients by ensuring that all actions within psychotherapy serve the client’s need to overcome the symptoms” which brought them into treatment. This takes genuine care and acceptance on their part. However, a patient can easily confuse the love they feel with simple “desire.” They’re not quite in love with their therapist, so much as they yearn for acceptance from someone, and in those sessions they just happen to be receiving it from their doctor.
Lori tells me that, all along, she has been “working with what I gave her” and that because I flirted with her a bit, she used that to her advantage in the treatment. In employing countertransference — indicating that she had feelings for me — she was keeping me from feeling rejected and despising my own thoughts and urges.
“There’s two people alone in a room together, and if they’re two attractive people, why wouldn’t they be attracted to each other?” says Dr. Galit Atlas. A psychoanalyst who’s had her own private practice for fifteen years, Dr. Atlas has an upcoming book titled The Enigma of Desire: Sex, Longing and Belonging in Psychoanalysis, and I sought her as an independent source for this essay to help me understand Lori’s therapeutic strategies.
Dr. Atlas explains that there are certain boundaries that cannot be crossed between therapist and patient under any circumstances — like having sex with them, obviously. But many other relationship borders can be mapped out depending on the comfort level of the therapist, as long as they stay within the scope of the profession’s ethics, which complicates the discussion surrounding erotic transference.
“As a therapist, I have a role,” Dr. Atlas says. “My role is to protect you.” She says it is incumbent on the therapist to not exploit the patient for the therapist’s own good, but admits that the presence of erotic transference in therapy brings about many challenges. “[Attraction] is part of the human condition,” she observes. In therapy, “the question then is: What do you do with that? Do you deny it? Do you talk about it? How do you talk about it without seducing the patient and with keeping your professional ability to think and to reflect?”
I ask her about the benefits of exploring intimacy in therapy, and Dr. Atlas quickly points out that emotional intimacy — though not necessarily that of the sexual brand — is almost inevitable and required. “An intimate relationship with a therapist can [be] a reparative experience — repairing childhood wounds — but mostly it’s about helping the patient to experience and tolerate emotional intimacy, analyzing the client’s anxieties about being vulnerable and every mechanism one uses in order to avoid being exposed.”
Dr. Atlas says this topic speaks to every facet of the therapeutic relationship, regardless of gender or even sexual orientation, because intimacy reveals emotional baggage that both the patient and therapist carry with them into the session. But this isn’t a symmetrical relationship, and the therapist is the one who holds the responsibility.
“Freud said that a healthy person should be able to work and to love,” she says. “In some ways therapy practices both, and in order to change the patient will have to be known by the therapist. That is intimacy. In order to be able to be vulnerable, both parties have to feel safe.”
After I briefly explain all that has gone on between me and Lori, Dr. Atlas steadfastly says she does not want to judge too harshly why and how everything came to pass in my therapy. “I don’t know your therapist, and I don’t know your history,” she says. But she offers that I should “explore the possibility” that I might have created and admitted my sexual adoration of Lori because one of my fears is to be ignored, not noticed.
Then I offer: “Maybe this essay is being written for the same reason.”
Maybe I wanted to interview Lori about erotic transference in my therapy sessions for that same reason as well…to stand out as the most amazingly understanding patient ever.
* * *
“I want to be very clear that this was never about feeding my own ego,” Lori says about her approach to my treatment. “We were always doing this in your best interest.”
I’m in Lori’s office, a tape recorder rolling and a pad and pen in my hands.
“I felt I was doing a disservice to you if I didn’t ‘out’ what I felt was weighing on us, which, honestly, felt like a heavy secret,” she says, pointing out that she discussed my therapeutic process for many hours in her required supervision meetings.
In order for Lori to advance in her field as a social worker, she has to attend 3,000 conference hours with another professional to go over casework — kind of like therapy quality control.
We talk about all of this during one of my scheduled sessions, for the entire hour — and go over by a few minutes, too.
Lori says that when she began her career as a social worker, she decided she wasn’t going to shy away from any subjects. “It’s typical for a client to [have] a habitual desire to sweep things under the rug,” she observes, especially about taboo topics. It can become a cycle of behavior that Lori seeks to break.
I refer back to the time when, unprovoked, she brought up my attraction to her.
She says she mentioned it to avoid what therapists call “door-knobbing,” which is when a patient will purposely mention some huge reveal right at the end of a session so as to sidestep a lengthy conversation about it.
“My only question for you is, was I wrong for bringing it up?” she asks. “Only you can answer that.”
Lori’s great at forcing me to reflect.
“I guess when I said I was over it and could move on, that was an example of my strict black-and-white thinking,” I say, throwing back some language she’s used often to describe my challenge in accepting dualities. In my mind, I was either attracted to her and shouldn’t see her anymore, or I wasn’t attracted to her and could still have her be my therapist. There was no in between.
I realize now that she wasn’t wrong for mentioning my feelings for her, even when I didn’t want her to. Lori noticed that I was frustrated with myself and wanted me to know that an attraction to a therapist is so normal and happens so frequently that there are technical terms for it.
I turn my attention towards the presence of countertransference in our session. I’m trying to come up with an actual question here, but, really, I just want her to confirm her feelings for me are real. So I say, referring to her feelings, with a great degree of difficulty, “It’s funny that they seem genuine to this day.”
“They are genuine,” Lori says, adding a moment later: “I think it might be a good idea if we explore why our discussing it suggests a lack of authenticity.”
“It doesn’t, necessarily,” I begin, then stammer through a few sentences, worried I might offend her by implying she’s been dishonest. I finally settle on, “I guess it comes back to my self-esteem issues. Why would a beautiful woman think I’m attractive?”
Lying in bed with Shauna a few months into our relationship, I ask her what she thought about me the moment she first saw me. I’m fishing for a compliment. But we met on Tinder and I just hope that seeing me in person wasn’t some kind of letdown for her after swiping right on my hand-picked glamour shots. Obviously she isn’t going to say something so awful after having committed to me for so long. It’s a slam-dunk ego boost.
She says she liked the fact that I was wearing a blazer and a tie on a first date. She adds that I was a little shorter than she anticipated, but was content with the two of us at least being the same exact height.
“What did you think when you first saw me?” she asks, turning it around, naturally.
Staying committed to my honesty-at-all-costs policy, I say, “I thought you were really beautiful, but not to the point where I was intimidated by you, which was very important because if I was, you would have gotten a very unconfident version of me, and we probably wouldn’t have hit it off as well as we did.”
Shauna thinks about that for a second, and eventually nods “OK.”
I explain that my insecurity could often get the better of me in dating situations. It was easy to convince myself that I’d be rejected by the girl I was with, especially if I thought she was out of my league. I would then slip into a nervous and reserved state that isn’t at all reflective of my true self.
I’m essentially saying that I was so thrilled to not find Shauna so extraordinarily pretty that I couldn’t accept her being on a date with me. That thought made so much sense at the time I said it, but I’ve since come to realize it is as ridiculous as it is insulting. After ten months of being with Shauna, I’m still completely floored by her, on every level, including a physical one. It gives me great pride to walk into a room with her, and I don’t imagine that changing. Therefore, she actually did meet a confident “version of me.” The way people look doesn’t drastically change in ten months but a person’s perception of self can. It seems my emotional workouts in erotic transference were just beginning to produce results.
* * *
“People fuck up,” Lori informs me during one winter session. “Therapists have slept with clients before, just like politicians have had sex with their interns. But, so you have a full understanding of how this works, we can date.” She explains the parameters as outlined in the social worker’s code of ethics. One of the many stipulations is that we wouldn’t be able to see each other, under any circumstances, for at least two years before dating. She tells me she loves her job, and there’s no way she would ever sacrifice my safety or her career for anything, so she would strictly follow all the dictated rules. “If you truly want to date me, there is the option. But it’s ultimately up to you.”
I know what she’s doing here — putting the onus on me, just like last year when she said we could have sex. The difference this time is the answer I want to give is on par with all of my involuntary urges.
“I don’t want to stop the work we’re doing,” I say. “At this point, it’s far too valuable to me, and, really, I know very little about you.” She’s beautiful, exercises, is smart, funny, professional, enjoys good TV…and that’s about it. Aside from whether or not we’d even both be single in two years, and if we’d be in the correct mind frame to explore a relationship, there are several other things I’m considering here: Would Lori and I really be compatible in every way? Would she ever see me as a lover, a partner, an equal, and not a patient? Could I ever reveal a detail about myself, or even just a shitty day of work, without wondering if she was picking it apart and analyzing it?
Frankly, all those questions could be answered in the positive. But, even if I wasn’t in a happy relationship — Shauna makes this choice much easier, for sure — I wouldn’t go that route. I’d be out a therapist.
* * *
It’s a beautiful spring night in New York and only sidewalk seating will do. Shauna and I are out to dinner at a restaurant near her Queens apartment, and we’re both in good spirits. The weather and the alcohol consumption are partly to blame for that, but, on cue with the season’s change, I feel I’ve turned an emotional corner. Work payments that were past due are finally finding their way into my bank account. As it turns out, my short-term money troubles were not an indication that I had no business being a writer, or that my life changeup was as irresponsible as unprotected sex at fourteen years old.
I’d told Lori as much that afternoon. I took a mental step back from my current situation and realized that in spite of my recent hardships, I was succeeding. I summarize my session for Shauna, who nods in agreement, lovingly pointing out that she’s had the same challenging freelancer experiences as a dancer.
“You’re doing great, babe,” she says matter-of-factly.
“Thank you. That means a lot,” I respond. “I guess if I’m going to be a writer I just have to accept all this and have faith in myself. The way Lori put it was, ‘You just have to go all-in.’”
“Good,” Shauna says. “You should listen to the women in your life.”
* * *
Liked this story? Our editors did too, voting it one of our 20 best untold tales!
How a transgender Australian found her niche cleaning up after murders, suicides, and unimaginable filth of endless variation.
The back of Sandra Pankhurst’s business card reads:
“Excellence is no Accident”
* Hoarding and Pet Hoarding Clean up * Squalor/ Trashed Properties * Preparing the Home, for Home Help Agencies to Attend * Odor Control * Homicide, Suicide and Death Scenes * Deceased Estates * Mold, Flood and Fire Remediation * Methamphetamine Lab Clean Up * Industrial Accidents * Cell Cleaning
If the places we inhabit are like lungs, rhythmically drawing us in and breathing us out, Sandra Pankhurst’s job as founder of Specializing Trauma Cleaning (STC) Services Pty Ltd. leads her somewhere in between — homes with the lights still on where death, sickness and madness have abruptly abbreviated lives.
I first saw Sandra at a conference for forensic support services. Everyone had just poured out of a session on offenders with acquired brain injuries to descend on urns of watered-down coffee and plates of sweating cheese. On my way to the bathroom, I passed a table in the lobby where STC Services brochures were fanned out next to a sign inviting you to drop your business card into a fishbowl for a chance to win a bottle of Shiraz. A small TV played scenes of before-and-after trauma clean-up jobs. A very tall woman, perfectly coiffed and tethered to an oxygen tank, invited me to leave my business card. Hypnotized by the images on the TV (one of which brought to mind the words “feces” and “cartwheels”), I haltingly explained that I don’t have business cards. I did, however, pick up one of her brochures, which I read compulsively for the remainder of the day.
I was surprised to learn from the brochure that the police do not do trauma clean-up. Neither do firefighters or ambulance crews or emergency services. Instead, hired hands like Sandra handle the clean-up at crime scenes, deaths, floods and fires. Local and state governments, real estate agents, executors of deceased estates and charitable organizations all call on Sandra to deal with issues like long-term property neglect, where homes have “fallen into disrepute” due to the occupier’s drug or alcohol addiction, mental illness, aging or physical disability. Grieving families also hire Sandra to help them sort through their loved one’s belongings.
Performing a public service as vital as it is gruesome, Sandra is one of Australia’s unofficial experts on the living aspects of death.
“People do not understand about body fluids,” the brochure reads. “Bodily fluids are like acids. They have all the same enzymes that break down our food. When these powerful enzymes come into contact with furnishing and the like, deterioration is rapid.
“I have known enzymes to soak through a sofa and to eat at the springs, mould growing throughout a piece of furniture and I have witnessed the rapid deterioration of a contaminated mattress.”
The Shiraz and the oxygen tank and the coiffure were gone by the time the last conference session finished. But I still had the brochure, which, by then, had grabbed me by the neck and was dragging me in search of the woman herself.
* * *
“Hi Sarah, it’s Sandra. I believe you contacted me for an interview. If you could call me back it would be appreciated, but possibly not today as I’m just inundated at the moment and I’m on my way to a suicide. So if you could just call me back tomorrow…”
When I return her call, I learn that Sandra has a warm laugh and that she needs a lung transplant. She asks me in a deep, rich voice when I would like to meet. I tell her I can work around her schedule. “Okey dokey,” she says, and I can hear her flip open her diary. “How about the cafe at the Alfred Hospital?” She has a couple of hours before she sees her lung doctor.
It struck me then that, for Sandra Pankhurst, death and sickness are part of life. Not in a quote book sort of way, but in a voicemail and lunch meeting sort of way. Over time, I learned that this outlook was fundamental to her character. My other first impression of this striking woman, however, would turn out to be wrong.
* * *
“I was an adopted child. At the age of seven, I was told that I would no longer be wanted by this family and I had to live in a room they’d built out the back,” says Pankhurst. “I weren’t [sic] allowed by the family to associate with them after 4:30 p.m. and I had to fend for myself and organize my own food.”
Sandra is telling me about growing up on the mean streets of Melbourne’s West Footscray while calmly fielding calls on her cell. We are in the cafe, a place where the sick and dying, and those attending to them, can grab a latte or a cheese sandwich. Everyone is eating except for us. Sandra has to fast for four hours before her doctor’s appointment.
In her sixties, Sandra is very tall and graceful and immaculately groomed. I feel short and frumpy next to her. “I used to suffer a lot with boils and things because I weren’t [sic] really nurtured and looked after,” she says, explaining that the way a starving seven-year-old feeds themselves, if they are smart, is by stealing cans of food from the house when their alcoholic adopted father isn’t looking. And that will work until – petrified of being “bashed with a cobbler stick” – they accidentally burn part of the house down.
“One of my jobs was to light the hot water service and I had forgotten and I panicked,” Sandra says. “I put some petrol mower fuel in and it went and burned down the laundry room.”
She didn’t get beaten for the fire. She got beaten for stealing the cans of food which were discovered – empty, crushed and hidden – when the walls burned down.
“It was like an imprisonment sort of lifestyle. So hence, now I have this need for compassion,” she says.
Kicked out at seventeen, she moved in with another family she found through her church. She could stay with them only for six months but they organized a job for her at a steel works under Melbourne’s West Gate Bridge, the second longest in Australia, which was then two years into construction.
“I was working there when the Bridge fell down,” she says before describing the 1970 collapse that killed thirty-five construction workers and could be heard from over twelve miles away. She explains how the light bulbs popped out of their sockets, how she felt the earth shudder, how her first sight of death was over the back fence, watching police throw body parts out of public view.
A doctor sits down at the table next to us and squirts ketchup on a hot dog. The café is noisy but Sandra’s voice is clear above the chaos. When she speaks, she is mostly professional and deliberate. But there is also a cheekiness, a playful flirtiness, which she is beginning to fan out like a peacock’s tail. When she does this, her eyes gleam and she is very beautiful.
She skips over her twenties (which I note is strange, given her candor about everything else) and slips into her thirties, when she became one of the first female funeral directors in the state of Victoria.
“I absolutely adored the job. I loved it with a passion. It was a chance to give back and help people when they needed it most.
“I used to make every member of the funeral party become involved in it so that they would become very emotional. To me, a funeral should be like a play: You get it up to a crescendo,” she says, her long red nail drawing a hill in the air.
“You get everyone’s emotions there,” she says while poking the top of the hill, “they bubble over, then they boil down, and they get on with their life. Otherwise they’re up and down trying to deal with it for years. So, it’s just like conducting a play and getting everyone involved in the scenario.”
Through that work, she realized there was a need for trauma cleaning. “You realize the fire brigade and ambulance really had no time to deal with this. But never in my wildest dreams did I think I would be doing it.”
The path to her new career began with her husband of fifteen years, who she met when Sandra, as she puts it “buried his wife.”
Sandra gave up work to travel with him on his business trips. “But I got restless and bored after a while. So I said to him, ‘We need to buy a business,’” Sandra tells me.
She was thinking a boutique. Instead, they bought a hardware store in Brighton, a moneyed seaside suburb, which eventually folded. When the store went under, “We lost everything. We didn’t know what to do, ’cause we’d both been quite independent and strong. We had to start again,” she says.
She started doing odd jobs – a bit of gardening and interior design and house cleaning. But there wasn’t enough money coming in. “So, I stressed over this, and I thought ‘I know what I’ll do. I’ll just start trauma cleaning.’”
Their first job, cleaning up the rental property left by a deceased hoarder, came though her funeral industry contacts.
“It was a disaster. Seventy-two hours after two of us working nonstop, we were almost psychotic. We couldn’t believe that people could live like this. It was more of a squalor situation, even though the gentleman had died in the house. It was absolutely disgusting. It was just putrid. We had to take off three layers of flooring, and there was another contaminated layer of flooring underneath. But what happened was, the last layer was not only glued down, but it was stapled down. We’d slice the linoleum and put boiling water on it to try to break down the glue, and then we had to put spades underneath to get it up. Well, our hands swelled up like massive watermelons.”
“We completed it, and they were happy with the job, but we were severely depressed,” she says. “It took three months to come to terms with whether or not I could ever do this again. But as money was tight, and things were not good, I had to grin and bear it, and get up and go for it. And twenty years later, here I am. Still psychotic.”
* * *
In the context of talking about her husband, who passed away ten years ago, Pankhurst tells me in passing that she was not born female and that, finally, she’s not ashamed to talk about it.
She worked up the courage to tell him after they’d been dating for a little while.
“I’m transgender,” Sandra said, expecting a punch in the mouth.
“Does that mean you like women?” he said.
“It means…I wasn’t born Sandra. I had to make Sandra,” she said.
“Well,” he said, “I fell in love with Sandra.” And that was that.
“He gave me the confidence to be who I am,” Sandra says. Her story of grinning and bearing it, and getting up and going for it, suddenly becomes exponentially more meaningful. “And then he died and everything went to shit for a while.”
After his death, his two grown children had their fifteen-year marriage annulled in the process of contesting his will. Thus ended Sandra’s second marriage – erased because she had been born a man. Her first marriage, which she had entered into as a heterosexual, twenty-year-old male, had ended because her wife found out that she was a man who liked men. At that time, divorce on the grounds of homosexuality meant losing access to their two sons. For a lost decade, Christmas was too painful for Sandra to celebrate.
Two hours have gone past in the café and we need to wrap up. “My life is a movie,” Sandra says, promising to tell me about her twenties another time, if I’m still interested.
I am still interested.
As we leave the café, I ask if I could come along on some jobs and see her at work.
“I’ll call you when a trauma comes up,” she says, and tells me to get some Vicks to rub on my upper lip to help with “the smells.”
“Get ready to turn on a dime.”
* * *
I pull up in front of a complex of Soviet-style apartments and meet Sandra at her van, which is an immaculate traveling hardware store. I’m welcomed and handed a disposable white jumpsuit.
Four of her crew members are there. Jess is a cheery young woman in her early twenties. She stands next to a tall blond guy named Chris who may still be a teenager and who reminds me of a large teddy bear. Jackie and Sharon, both of whom are older, appear sullen and say nothing to me and little to each other. Everyone has been reduced to a small face sticking out of a disposable white hood. Chris hands me two flat white things that I think are chef’s hats but that can’t be right.
“What are these?” I whisper, embarrassed that I don’t know.
“Shoe covers,” he smiles. I sneak a glance at the others to figure out how to put them on.
With our hoods up and our blue gloves on, we all stand there looking like something in between Smurfs and astronauts. Sandra is wearing a slimline purple parka, jeans and white canvas sneakers. She looks like she should be enjoying a Pimm’s after a walk around the park. Instead she leads us through the gates, into an elevator and up one floor to an apartment where a 34-year-old woman died of a heroin overdose and lay undiscovered for two and a half weeks.
Sandra will collect the deceased’s personal items for the family and appraise what needs to be done to rent out the apartment again.
A man on the ground floor looks up at us, asks what we are doing.
“Just some maintenance, darl,” Sandra reassures him, which, in its way, is the truth.
One of the Smurfs unlocks the door. Sandra has a quick look inside.
“Ugh. Stinks,” she says coming back out.
“Right. Masks on, breathe through your mouth!” she says, warning us to look out for syringes while she helps Jess tighten her face mask. “You may never breathe again, but don’t worry about it, “ she says to her wryly.
I tighten my own, forcing myself to learn how to do it.
Jackie takes out a small jar of tiger balm and rubs it into each nostril before slipping on her mask.
“Been doing it for so long, I don’t bother…Grin and bear it!” Sandra sings.
“Is it beer o’clock yet?” someone asks.
“Yes” is the general consensus.
Sandra tells them that she can’t drink because she needs a lung transplant. Jess asks if it is because of smoking. Sandra tells her it’s from this work, early on, breathing in the cleaning chemicals in the days before they knew better.
“But I can’t sue myself!” she chirps as we follow her into the apartment. “Breathe through your mouth! Concentrate on it!”
The first thing I notice is the flies. Black mounds of dead flies are pooled in the light fixtures. Their papery corpses are scattered over the floor. I wouldn’t say that the place is carpeted with flies, but there is a pretty consistent cover of them on the tiles.
Instantly everyone goes to work and I am alone getting my bearings. Small apartment. Laundry cupboard in the tiny foyer, the dryer door opened wide. I walk past the bathroom, two bedrooms and into a living room/kitchen area with a nook for the woman’s bookshelf. There is a balcony off the living room. The TV is on Channel 11, playing cartoons. A breeze blows in through the open sliding door and over the sofa in front of the TV, which has been stripped of its cover but not the person-shaped brown blood stain spread across the seat nearest the window. The stain is gross and scary but not as scary as the tableau of life suddenly interrupted.
Sharon is in the bedroom guessing about the face of the woman whose underwear drawer she is emptying.
Jess is making an inventory of the kitchen. She opens drawers and cupboards and takes photos. The top drawer has the full complement of cooking utensils owned by high-functioning adults. The cupboard has a big box of cereal and a jar of Gatorade powder. A gray grocery bag of garbage is suspended from the handle of the cupboard below the sink.
“Everything has to go,” Sandra says, striding through.
“The fridge comes with the apartment,” Jackie says.
“Ah,” Sandra responds, dismayed. I can see her mind flipping through her library of disinfectants in the van. “What else comes with the apartment? We need to be clear or else we’ll throw everything else out.”
The lone magnet on the fridge reads: “If your doctor is closed, we’re open. After hours medical helpline…”
Jess is photographing a drawer full of grey plastic grocery bags.
The workers are efficient, they are quick and respectful. They remind me of nurses.
Next to the kitchen sink, on the counter, is a pile of clean syringes. On the other side is an unopened box of organic cotton tampons, tossed there like they were bought an hour ago and are waiting for the milk to go into the fridge before they are taken to the bathroom cupboard.
Sandra instructs them to take the clean syringes and seal up the yellow bottle of dirty ones on the coffee table for the police “as evidence of drug activity.”
Everyone has gathered around a framed photo of the deceased woman.
“What a waste,” someone says.
“Pretty girl,” another says. I wonder if that’s what she looked like when she died or if that’s what she looked like at the time in her life that she would forever try to return to.
I scan her bookshelf. “Narcotics Anonymous.” “The Secret of Attraction.” “Taking Care of Yourself and Your Family,” and also “When Everything Changes, Change Everything.” There are DVDs. “Bridesmaids.” I love that movie.
An ad for Big Hugs Elmo, the toy that hugs back, comes on the TV. I go to her bedroom. There are bottles of Ralph Lauren perfume and a pink salt lamp and an organic lip balm.
“Anything that’s personalized, anything that’s got her handwriting, her name…” Sharon reminds Jackie to set aside as they go through the desk at the foot of the bed. They are winding up her phone charger and putting her handbag near the door.
Sandra places a birthday card with a sassy cat on it into a plastic bag of personal items and tells Chris to look carefully through all the books to see if there are any photos kept between the pages. The family wants anything that’s personalized. It’s important.
I cross the hall. The bathroom cupboards are open. There are the usual assorted creams and appliances. Fake tan. The exfoliator I use.
I go back into the living room and force myself to look around slowly. I see two bed pillows covered with the same kind of brown blood stain on the couch. I see a viscous smear of human shit on the floor under the couch. I see a big bottle of Pepsi Max, still full, and a pack of cigarettes on the table.
The apartment is so full and so empty at the same time; absence is a presence like dark matter and black holes.
A few of us take the elevator down to the basement parking lot to the woman’s chain link storage cage. It is empty except for a saggy mattress and a mound of plastic baby toys lying on the gunmetal cement.
The four small rooms, plus basement storage cage, are an encyclopedia of striving and struggle. The basket of clean laundry. The elliptical machine painted thick with dust. The clean syringes. The smell of death unnoticed for two and a half weeks that is seeping in through my mask and into my mouth.
We step outside for a moment. Sharon is holding the camera. There is blood on her gloves.
Someone asks Sandra where the blood comes from if the house was locked up.
“Maggots,” Sandra says dryly. “Cycle of life. It’s quite amazing.”
Sandra directs Chris how to double-bag the personal items so that they don’t smell. How to wrap the tape around the top so that it is easy for the family to open.
I stare across into the windows of the other apartments surrounding us on all sides. This is how it ends, sometimes, with strangers in gloves looking at your blood and your too many bottles of shampoo and your ironic “Make Positive Changes” Krishna postcard and the last TV channel you flipped to on the night that you died and the way the sun hits the tree outside your bedroom window.
This is how it ends if you are unlucky but lucky enough to have someone like Sandra remember to flip through your books for pieces of you to save before strangers move their furniture into the spots where yours used to stand.
* * *
At our next meeting, I ask Sandra if some deaths are worse than others.
“There are a few jobs that stick in your mind. Like there was a guy, for example … it was more the way he went about killing himself. It was with tree cutters and bricks…And you surmise, ’cause you don’t know everything about the case, but you figure: Has he cut his toes off? Has he cut his cock off? ‘Cause you’ve got this slash of blood all over the room. And then he’s walked around the house as well.”
Male suicides are generally bigger jobs than females.
“It’s the way they do it…you’ll always find that men are dirty killers whereas the women are very tidy in the way they do it,” Sandra says.
“Like cooking,” I offer.
“Yeah,” Sandra says, and we are quiet for a moment.
“By the same token,” Sandra adds, “there was one guy who blew his head off, and he put plastic up in the bathroom, just so it’d keep it quite clean. It all went way over. But the thought was there.”
Speaking about her employees she says, “It can be quite transient. It’s a difficult job and I’m probably problematic to a degree because I’m anal. You know, like I say to them, “Look, I’m two or three times your age. I need glasses to read and I can spot a cobweb at a thousand paces. Why can’t you see what I can?”
I ask her what qualities the work requires.
“Compassion. Great compassion, great dignity and a good sense of humor ’cause you’re gonna need it. And a really good sense of not being able to take the smell in, cause they stink. Putrid.”
* * *
The next job I go on with her is the home of a hoarder. Glenda is in danger of being thrown out of her home, which was intended as temporary housing for women in crisis, after packing it full of debris during her five-year stay. Hired by the housing authority against Glenda’s wishes, Sandra and two other workers will clean it out, one day a week for six weeks.
“Slowly, slowly. Going through all her crap, sorting it out. What is rubbish, what is to be kept,” Sandra explains.
“First they’re embarrassed, the anxiety and everything,” she explains.
“We reconstruct the house so they’re living in a different situation, it’s cleaner, and they’re more amenable to continue that. You planted a seed for them, they thought it was insurmountable, then they’re going, ‘Ah, this isn’t so bad after all.’
“I do come home exhausted from a day of hoarding, I am absolutely wrung out,” Sandra admits. “Because there’s constant bartering and getting them to agree but trying to turn it so that it’s their idea.”
“So, it’s actually the people who are alive that are more problematic?” I ask.
“Bingo,” Sandra says “I’d rather a dead body any time.”
Glenda is short, maybe sixty. Her hair is white at the roots. The rest of it is the same neon pink as her T-shirt. She is welcoming and we shake hands.
Sandra is ostensibly on the enemy side. However, Glenda has willingly let her inside and is working with her. Kind of.
“If I cry, I’ll try not to upset you,’ Glenda tells Sandra.
“If you cry, I’m bound to cry. So don’t,” Sandra says. “But if you do, we’ll cry together.’
Glenda’s accent reminds me of one of my relatives, who smells like powder and greets our visits by stuffing me and my family full of cake. But instead, Glenda is alone and living in a house full of yellowed newspapers and cats and their shit, which she is unable to clean or unwilling to acknowledge, so she presses newspaper on top like a layer cake.
“Her name is Cleopatra,” Glenda tells me as we stare down at a cat carrier.
Behind us, on a busted navy sofa, four other carriers holding four other cats are lined up in a row.
After a quick negotiation with Glenda in which the laundry room and bathroom are deemed off-limits (photos will later show me that these areas were painted thick with cat feces), Sandra shows me the area they’re currently working on in the kitchen/living room. It’s full of books, office supplies, appliance boxes, newspapers and other miscellanea, such as a child’s polka dot suitcase. The room appears to be undulating; everything is floating on top of everything else like flotsam on a roiling sea. The smell of cat shit is so strong my eyes water.
At the threshold of Glenda’s dark bedroom I am immediately confronted by a wall of stuff that reaches to the ceiling. There is only room to peer around the door and down at Glenda’s nest: a tiny mattress on the floor not long enough for her to stretch out on. There is a stack of books and periodicals next to it, with a pair of gold-rimmed spectacles folded neatly on top. Everything is in danger of being subsumed, any minute, by the great wall of debris, which looks like it is swaying on failing foundations.
Sandra’s negotiations with Glenda continue. She walks up holding the latest basket full of Glenda’s debris: A shower cap. A free anti-virus CD. A contraption to give a dog a pill.
“I’ve made an executive decision,” Sandra announces. “This is shit.”
We all giggle.
“But some of them are not shit,” Glenda says, still laughing.
“Oh, tell me what!” says Sandra.
Glenda holds up the CD.
“Are you gonna use it, really?” Sandra coaxes.
Glenda nods. “Yes, tonight.”
“Oh, you liar,” Sandra says, causing Glenda to break out into giggles again. “This thing’s going to the shithouse. I’m telling you now, this is going to buggery.”
Glenda moved to Melbourne twenty years ago, leaving her husband behind. She didn’t explain why. But she returned to him when he was dying in the hospital. She tells me how for three months after his death she couldn’t cry. “I became wooden,” she says.
Eventually Glenda gave herself permission to grieve. “I got a little kitten, she’s twelve years now, and I put it next to me. I slept, I woke up, I started crying, I’d stretch out and there was her warm, purring body and I’d fall asleep again.”
That cat now has ten siblings, some of whom are in the carriers around us.
I learn that Glenda is a qualified dentist. That she has a psychology degree with honours. And worked for years as a grief counsellor.
In addition to a plethora of short courses and certificates, she has completed a professional writing and editing class and part of a Master’s in law. We know some of the same people, have gone to the same university.
In a dream I sometimes have, I’m always saving something from my childhood home before it is lost forever in a flood, maybe, or the urgency of war – photo albums, candlesticks, books. I cannot part with the dented pot that I remember my mother putting on the stove each week before she left us for good. Or a shopping list on an envelope in her handwriting. In a world that changes so quickly, and where everyone eventually leaves, our stuff is the one thing we can trust, and it testifies, through the mute medium of Things, that we were a part of something greater than ourselves. Glenda’s house is more than a question of homey clutter, of tiny shelves and the things we place there. Pain is a lunatic landscape, where every piece, however misshapen, fits perfectly. In the context of facing life alone, her fortress of shit makes sense.
Coming over to take a break, Sandra is panting from the strain that any walking places on her lungs. Hoarding doesn’t discriminate on the basis of income, she explains. It can happen to anyone.
“You look on the wall – “Director of the Hospital” or “Head of This Company” – and you think ‘What incident happened in your life? Or did someone leave you and leave you emotionally scarred, and you couldn’t deal with it?’ Like, there’s so many fragile things can just twist you and turn you. And I say, by the grace of God, it could be me. So I’m not going to judge anyone. None of us know what tomorrow’s got in store”
I nod, looking at the wall of garbage bags surrounding us on Glenda’s lawn.
“Like, I was supposed to have this lung transplant in 2011, but I had a series of things go wrong. I got sick and sick and sick and sick…I’m not ready to go out to die yet. And I’m definitely not going downstairs.”
I have a thought which is confirmed a couple of months later, when I am sitting in Sandra’s sun-drenched living room, looking at a framed photo of the two sons she last saw forty years ago, and listening to her calmly explain how she survived a violent rape, the killing of her fiancé at a nightclub in 1980, and what sex work was like in the isolated Western Australian mining town of Kalgoorlie in the years when she had to conceal the fact that she was a pre-op transsexual.
Life can break you like a wave on a prow. It seems to have broken Glenda. But that is not how Sandra is going out.
As Sandra walks me to my car, Chris hurries after her. Glenda has started opening the bags she agreed to throw out. The smell made Sharon vomit – Sharon, who was fine last week at the dead woman’s apartment. Glenda has started to get upset. Sandra returns to the necessary business of cauterizing.
“That’s what happens when you open the bags that you agreed to throw out,” she sighs.
* * *
The next time I speak to Sandra she is angry. It’s the week before Christmas, and a housing organization is pressuring her to work faster so that they can move their client, another hoarder, this time a schizophrenic young woman living alone, to new accommodation. Sandra finds the timing gratuitously cruel to the woman. In recounting her standoff with the organization (which she won), her use of expletives is beautiful; listening to her swear is like watching Michelangelo paint the Sistine Chapel.
You could say that Sandra knows her clients as well as they know themselves. She airs out their smells. She throws out their weird porn and the last of their DNA entombed in soaps. She does not, however, erase these people. She couldn’t, because she has experienced their same sorrows.
The distance between where Sandra grew up and where she lives now is about an hour’s drive but further than walking to the moon. She has arrived where she is now through an epic amount of internal fortitude, which she lavishes on those who have lost their own. Despite having experienced worse blows than many of her clients, Sandra is the one who steps in to make order out of their chaos.
“I feel quite successful in my life,” Sandra says. “I’m not financially successful, but I’m successful in my life. I’m not a prostitute or a drug addict…I have a healthy, normal lifestyle. I have fantastic neighbors who treat me like gold. You know, I’m very blessed in life. But it’s my attitude I think.”
Despite seeing the same old shit each day for the past twenty-one years, she treats each client as unique in their circumstance and equal in their dignity. The reason why she doesn’t get suited up like her workers is actually not because she has been doing the job for so long.
“It’s because I’m meeting someone there — quite often a family member — I don’t want them to go into shock, like this person from out of space has come here. I grin and bear it and I go in.”
I ask her how she maintains that level of compassion.
“Everyone deserves it — because I deserve it as well,” she says.
This is, for all of us, the importance of being Sandra Pankhurst.
* * *
Sarah Krasnosteinis an American-Australian writer and legal academic. She is currently working on a creative non-fiction book about Ms. Pankhurst. Follow her on Twitter @delasarah
Sage Barlow is a freelance illustrator living in San Francisco. Check out more of her illustrations and paintings at www.sagebarlow.com.