The summer my father’s kidneys began to fail, I was nine years old. At twilight I lay down on the wet, coarse sand of the Long Island Sound’s tide flats, grit digging into my knees, face inches from the damp. I pressed my hands alongside the siphon holes of soft-shelled clams, called longnecks or “piss clams” because they drew in seawater, filtered it for food, then shot it back out in a stream. Press the sand and they’d dig deeper. I played them, an orchestra submerged, while inside the sand the clams burrowed away from me, like they couldn’t do from a swift rake in the hands of an adult.
“Monkey!” my father called. I looked up; he stood framed by the rows of cottages, barefoot and in dungarees, a bucket in his hand. “Want to dig?” At dawn and dusk, clamdiggers filtered out to hunt for longnecks.
“Yes!” I ran up to him, wet sand on my knees and on my dress.
He grinned, “Alright then. Find me a good spot.”
I ran to the place where I’d been playing the orchestra. “Here!”
He walked up, kneeled, the dampness spreading from his knees up and down the denim. His bony feet curled for balance, toes digging into the sand, arches exposed to the air, vulnerable and naked. With his rake, he combed the ground where the clams were buried, revealing the animals. I sat next to him and dug in the hole he’d made as it filled from the water table below, sorting out clams in the low-visibility murk and dropping them into the bucket.
Out in front of me the water of the sound, what F. Scott Fitzgerald called a “great, wet barnyard,” stretched shallow and calm in the low tide. Like my father’s body, the water of the sound faced a rising tide of poison. The factories of Bridgeport, Connecticut, were visible in the haze, and I could see a radial tire marooned by the jetty to the west. Behind me was The Periwinkle, my grandmother’s rented cottage on the stretch of summer places we called Dogshit Beach. Only a train ride from New York City, pollution and development had tarnished and crowded the beach where my mother spent her childhood summers. When she was nine, it was middle-class vacation oceanfront. She could find horseshoe crabs and mussels and snails and fall asleep to the sound of clear blue waves. By the time I was nine, both the ecosystem and my father were slipping away.
When my father finished searching an area, he got up, sandy hand on hip, and scanned the sandbar for another set of breathing holes.
“There!” I pointed.
He picked up his bucket and moved. I ran to the tidal edge to wash the sand off my hands, then ran back to the next hole — hunting, hunting.
His metal bucket was full of freshwater from the outdoor hose at The Periwinkle, to which he added cornmeal and sea water. In the mixture, the longnecks leaked sand. Free from their holes, the clams’ shells seemed ready to splinter and peel away from their delicate bodies. When the bucket was full, my father got up.
“Want to freak out your mother?”
She stood in the front yard against the blue dusk, smoking a cigarette. She hated the smell of chowder and left the cottage when he cooked clams. She wouldn’t eat sea creatures but loved to show me how to find them; she swam every day at the sound, denying the damaged water and my father’s fading health. The baby of her family, she was beautiful, needy, shy, dependent — a translucent jingle shell chiming in the breeze, breakable under strain.
I nodded. “Can we eat the clams this week? No red tide?”
“We can eat clams this week. No red tide.”
“You’re not too tired to cook?”
“I’m not too tired to cook.” He looked embarrassed.
He didn’t say, My kidneys are fine today. He wouldn’t. Polycystic kidney disease — the incurable genetic illness that had killed his father and grandfather before fifty, that was killing his sister and brother, that would kill him — hovered around us unnamed.
* * *
Polycystic kidney disease, or PKD, is a mutation — most commonly expressed in adulthood, though existing in a juvenile form — that causes fluid-filled cysts to multiply in the kidneys until they grow and swell, overwhelming all healthy tissue. Afflicted kidneys look as if they are sculpted out of rosy bubble wrap and can be enormous; the largest set of PKD kidneys ever recorded reached a total weight of seventy-seven pounds. The illness can be painful, or it can be quiet. It can bring storms of brain aneurysms, killing the patient before they know they are sick, or kidney failure so slow that their family is witness to a steady decline. There are forms of PKD that linger, hesitating to express themselves in a carrier until that person’s seventies. But for most patients, the disease is invisible until it isn’t, waiting until a person is in their thirties to begin to flood the body, slowly and relentlessly, a rising sea under the skin.
Medical historians believe that PKD has shadowed humanity throughout our existence. Records of the disease begin in 1586 when the Polish king, Stephen Báthory, died on a hunting trip and his physicians noted that, on examination, his kidneys were bumpy and enormous. Portraits of Báthory show a huge belly, a common result of enlarged kidneys. He and his family had been afflicted by gout, a companion of chronic kidney disease, where uric acid builds up in the blood. The king died at fifty-three. His father had also been in his fifties when he died, while his brothers did not live to see fifty.
It wasn’t until 1888 that the first researcher used the term polycystic kidney. In 1899, the first researcher recognized that PKD was heritable. It would take nearly another hundred years for anyone to understand the mechanics of that heritability, why for some it is a storm, some a breeze, and how it has become one of the world’s most common genetic illnesses. In the long-term, the illness took a predictable course: abdominal swelling, pain, loss of energy, rising blood pressure, fatigue, infection, loss of urine production, and the end stages of acute kidney failure, which could kill in a week or less. Patients succumbed to chills and fever, fatigue, coma-like sleep, and finally death as the toxins in their blood increased to overwhelm the system.
In 1894, at thirty, my great-grandfather — a prosperous pharmacist and married, with three daughters — was well enough to have “gone out on a grand fishing expedition” on Missouri’s Gasconade River, according to the American Druggist and Pharmaceutical Record. He became ill four years later. No medicine could help him. He could no longer work. At forty, he died. My grandfather was only a year old. The family fell into poverty.
My grandfather joined the Navy at sixteen, sending money home to his mother, trapped by loss in a St. Louis tenement. In his thirties he fell ill. Kidney disease was suspected and experimentation recommended. My grandfather underwent invasive procedures to lance cysts, but they only filled up again and grew larger. His doctors used sulfa drugs to treat the fluid as if it was a bacterial infection, which brought only short-term relief.
When my grandfather died (in a hospital room down the hall from an experimental dialysis machine, according to family lore), my father was sixteen. The cycle continued: My father left school, worked to support his mother and siblings, finished his GED at night. His sister Lois, eighteen, gave up a math scholarship at an Ivy League college, got a job in New York City. At twenty-five she’d fall ill.
Our family called PKD “the Caffall Curse.” It was a curse we met mostly in silence, in magical thinking, in overwhelm. Of my father’s three siblings, two had PKD. None of them had biological children. None of them wanted to pass on PKD. My parents chose to have me thinking PKD skipped my father, and therefore would spare any children he had, passing over us like a plague missing the house. It did not.
* * *
Our global marine ecosystem works not dissimilarly from the circulatory system in the human body. Its waters — and the creatures within them — regulate temperature, weather, the food chain. The Long Island Sound, like all estuaries, is a filter, something like a kidney, and also a cradle, a liminal space between the land and the sea. When an estuary is sick from pollution, as the sound was, it can give rise to life-threatening crises such as red tides.
Red tides are massive marine blooms of algae, so-called because they turn the ocean rust-colored and indicate that the shellfish are not safe to eat. Before colonization, red tides were part of the normal rebalancing of the water. In 1800, the politician Daniel Webster called the healthy sound “the American Mediterranean” — fish so plentiful you could walk north along the rivers on a highway of oyster shells, eating clams the size of loaves of bread, rivers silvered with spawning alewives. As settlers used and fouled it, writing it off as a waterway for farmers, industry, and ferries, it became less a churning, contained nursery of abundant life and more an instrumental sea. Fitzgerald, looking at it from Long Island, said the sound was “the most domesticated body of saltwater in the Western Hemisphere.”
When the water is saturated with an overabundance of nitrogen sloughed off farm fields in the rain and leached sewage from overburdened waste facilities, it is called over-enriched, as if capitalism’s goals have spilled over into the sea.
A teaspoon of seawater can contain millions of individual plankton and hundreds of plankton species; phytoplankton, tiny water-going plants, and zooplankton, tiny animals that feed on them. Together, they are the drivers of the food web, building blocks of the world’s oceans. Phytoplankton produce eighty percent of planetary oxygen, as much per year as land plants, and sequester a significant portion of our carbon. A red tide blooms the ruddy dinoflagellate microalgae Alexandrium fundyense, a type of plankton. These plankton house potent neurotoxins and saxitoxins, exposure to which in humans can produce Paralytic Shellfish Poisoning (PSP), which can lead to paralysis, to death. A. fundyense respond to over-enrichment by breeding and depositing seeds that will bloom in red tides the following summer. A filter feeder like the longneck clam is especially likely to consume A. fundyense. Measuring these seeds can enable scientists to predict what will come in the future — a healthy year or a year in which the clams can kill.
The seeds of A. fundyense are called cysts.
* * *
As the Housatonic River delivered nitrogen and toxins to the estuary from factories and farms, it delivered my family to the sound. We flowed with it, back and forth from our house in Great Barrington, Massachusetts to Dogshit Beach. My mother’s mother owned the building we lived in, over an Exxon station; my father made furniture in the shop next door, stored lumber in the barn. The Exxon station had old style pumps, a sign facing Route 23 with the trademarked tiger, a store, and the two apartments — one above the store, one behind it, all abutting a long meadow at the foot of East Mountain. My grandmother’s apartment was renovated. Our apartment was cramped, narrow, and dark, with indoor-outdoor carpeting and linoleum, paneling, and cast off furniture pieces built by my father’s apprentices. He’d promised to fix it up. He never did. “The shoemaker’s children go barefoot,” my mother said.
My grandmother’s money rumbled at the edge of our poverty. When she was away and we were responsible for the bills, our electricity was turned off. When we didn’t have money for food, we ate government cheese. I learned to shoot a rifle in the woods with my father, learned to track deer, learned to fish, learned to eat what he could hunt when we were hungry — a hybrid of conservation ethics and poverty, creating murky lines of morality.
I didn’t make friends. I kept quiet and taught myself to be tough, more my father’s daughter than my mother’s. She had been the sick child in her family, born premature when, as she told it, her sister leapt onto her mother’s pregnant belly one afternoon while they sunbathed at Dogshit Beach. Another summer she was rushed from their cottage to a hospital for a tonsillectomy where she was isolated from her mother for two days; she came back angry and resentful, her mother guilty and doting. My mother didn’t know how to take care of anyone else, and my father wouldn’t tell her how to take care of him. Through silence, the Caffalls survived in a world where admitting their incurable illness could mean loss of hope, work, and anything the new generation built on the ruins of the old. My mother embraced the attention that came with illness; my father resisted it.
I knew about the Caffall Curse, but only sideways. At holiday dinner tables my father’s siblings spoke in code, whispered in hallways outside my door when I was supposed to be sleeping. When I asked, they told me it was a disease some of our family had that made bubbles in the kidneys, filled with water. They spoke as if it wouldn’t touch me, a flooded land they inhabited that I could see from the dry shore. It was as inexplicable to me as the causes of red tide.
One afternoon in that summer of 1980, I found my father asleep in the gas station, his torso draped over an angled drafting table. In the woodshop north of the main house, his apprentice worked on a Shaker cabinet; in the storefront — with the cash register, case of snacks, and shelves of antiques for sale — my father worked on designs while he waited for the afternoon rush of cars heading from town into the hills. “Are you alright?” I asked, my hand on his shoulder. He sat up, revealing a drawing of a grandfather clock. His pencil rolled onto the floor.
“Oh, yeah, of course,” he said.
“You fell asleep.” I picked up the pencil and tucked it into the pocket of his denim shirt next to the notebook where he kept lists of the books he wanted to request from the town library.
“I did,” he rubbed a hand over his eyes, blinked at the empty storefront. “No customers?”
“Just me. I wanted a snack.” I walked to the cash register, took a candy bar from behind the counter.
The day before, he’d asked me to play cribbage while out the window, the afternoon sun caught the face of Monument Mountain. “Do you know that the rainbow trout we caught last weekend wasn’t even from here?” he asked, animated by just the thought of being on the river. “Those fish are supposed to be in western streams, not the Konkapot.” He volunteered at Trout Unlimited, and he’d started going to lectures, taking me with him.
“Does it think it’s a trout without limits?” I asked.
“There’s my smartass!” he crowed, a grin lighting up his face “Now see if you can skunk me.”
But that afternoon he didn’t ask me to play. “Just tired?” I asked.
“Nothing to worry about, Monkey.” He put his hand to his back and massaged the side of his body, wincing. He had circles under his eyes. “I’ll be okay.” From the windowsill next to his drafting table, he fished out an aspirin bottle. I remembered him telling me once that his father worked until the week before he died.
That night, my grandmother, my mother, and I watched The Undersea World of Jacques Cousteau on PBS. It was dark outside. My mother and I sprawled together on my grandmother’s scratchy mid-century couch, a fire in the woodstove, the Milky Way spiraling around me in the imaginary dark of my closed eyes. “Long before there was a sprig of grass on Earth, there was life in the water,” Cousteau intoned. I pretended that I could stay in that warm room all night, wake to the view of East Mountain from her sliding glass doors, peer through the nautilus shells she’d glued to the glass, looking at the green lilac trees.
“You could go back to school,” I heard my grandmother say, her voice floating in swirls of gas clouds and nebulae somewhere distant. My mother was a model before my parents left New York City when I was born. In the Berkshires, she tried many things — writing books on quilting, teaching needlepoint, cooking. But she bathed in anxiety, afraid of heights, horses, crowds, talking on the telephone, losing my father, being poor. She helped pay our bills by cooking in hotel kitchens and lived for the water. “You know,” my grandmother went on, “finish your degree. You can’t cook at inns forever.”
I could feel my mother’s body tense. “What would I study?”
“What do you like?”
“The ocean, I guess.” She was quiet. “Where would I go?” Her voice sounded like packing a bag.
“Well, UMass isn’t that far away.”
“Two hours.”
“You could make it work.”
“What about the business?”
“He won’t be able to work much longer.”
I opened my eyes. No one had ever said that near me, and I lined up facts like points in constellations — my father asleep on the drafting table, his sore back, his fatigue after fishing, hunting, walking the forests.
“I know,” she said, like standing in the crook of an open car door, turning to wave goodbye. She was silent for a long time. Then: “I wonder if they have oceanography.”
Later, in our own living room, while my father slept and my mother and I were on our ratty couch, too dark to see anything but the headlights of passing cars, she asked me: “Would you be okay if I went back to school?” as if it just occurred to her. “Because daddy is getting sick.” She almost whispered.
“With what Aunt Lois has? With what his dad had?”
“Yes. His family all has it.”
“Uncle Brian?”
“Well, we don’t know yet, he’s ten years younger. But Dennis does.”
“What about me?”
“We don’t know about you either. But you could.”
I froze. “Okay.” I was starting to burrow under sand, under water.
“You have a fifty-fifty chance. So maybe not. Maybe it won’t happen at all.”
Fifty-fifty. I wasn’t sure I knew what that meant. She had said it and now it was mine; I would have to hold it. I could imagine how she’d look at me, the way she looked at my father. Already, she was looking at me like that in the dark.
* * *
In my father’s lumber barn, among the planks of curing tiger maple that would become Shaker tables, I made a corner into a Ranger Rick club, with pictures of whales and seals and dolphins from magazines taped to the walls, bare bulb suspended over a dirt floor, a pile of lumber stacked and covered in a quilted moving blanket. At nine, I knew animals were in danger. At the Trout Unlimited lectures and river cleanup days they talked about acid rain. The back of our car was littered with pamphlets on pollution. My mother read Rachel Carson’s books. My grandmother donated to Greenpeace. They rarely spoke about what was collapsing or why, only told me that it was.
I didn’t understand that the chemical compounds of acid rain were contributing to the increase in red tides, dissolved nitrogen entering the atmosphere at increasing rates as the water cycle drew it up from fertilized fields, then sent it back as rainwater. Whales and seals relied on the food sources impacted by those forces. The illness of the streams around me seemed like something we could correct on weekends of river cleanups, something that could be healed if we just bent towards the work. The terrible danger to the ocean, the endless chain of toxins reaching from the tiny rivulet that ran down East Mountain in the springtime to the sound — that was missing from my consciousness.
When we caught the rainbow trout, we were on the Konkapot River, my father’s favorite, a stream that fed the sound. We drove into the hills and walked up the pine-carpeted stones along Umpachene Falls, ate sandwiches while our feet soaked in a shallow trough of moving water, then drove to a dirt road where he parked on the side, pulled waders and a fly rod from the trunk. I took my book and walked with him through the brush to a pool. “No one knows this spot,” he said. “I found it when I was working on that house out here.”
I trailed him, watching out for brambles, picking fat blackcap raspberries and putting them into my mouth, sun-warmed and sweet. “Are there fish?” I asked.
“Rainbows,” he said, grinning back at me, “maybe brookies.” The stream was small and rocky. It was hot, and I took my shoes off to wade into the water. “Quiet,” he whispered, “don’t want to spook them.” He put on his waders and prepped the fly rod, choosing a fly he’d made himself; a new hobby that required no standing, no lifting two-by-fours, a hobby for exhausted days. But on that good day, he didn’t need rest: He stood tall as the sun lowered and mayflies hovered over the water and the trout came for them.
A week later, my parents loaded up the car and the three of us followed my grandmother to the beach. My father seemed tired and distracted. “Don’t kick the seat,” he said as he drove south along the Housatonic, “my back hurts.”
* * *
I understood what was supposed to come next for my father, when his kidneys no longer filtered poison from his blood: dialysis, the most common intervention in the United States in 1980.
My aunt Lois had been on dialysis for my entire life. She’d shown symptoms of PKD early, and kidney failure sent her into early menopause. She started dialysis in a hospital in New York City, then dialyzed at home; her husband taught himself to be her at-home dialysis attendant, tending to her four nights a week for four hours a session, as her blood was removed through a long needle, sent to the filtering machine whirring at her elbow, cleaned of poisons, and restored. Mostly, she made it look easy. While she had her blood cleaned, she read books and sewed her own clothes — loose, to hide the bulge of her enormous kidneys. She worked in an advertising agency on Madison Avenue that had the accounts of the Metropolitan Opera, the New York City Ballet, the Bronx Zoo. When I visited, she produced tickets and trips, then disappeared into her treatment, returning tired. She taught me how to cook, but in conversation with her brothers, she’d list in detail the restrictions on what she could eat and drink, how to control protein, potassium, phosphorus — chemicals that would build up in the blood, fluids that would choke the system. Dialysis saved her life. Dialysis became her life.
In dialysis, the patient’s over-enriched blood is run into a series of permeable membranes, bathed in a solution that splits the chemicals from the blood. Magnesium, sodium, potassium, sulfate, calcium, chloride, and phosphorus are removed until the blood is cleaned and returned. By the 1960s, technological and plastics innovations enabled doctors to improve the procedure and make it more widely available. There was only one problem: so many people were in chronic kidney failure, yet so few could afford the treatments, and without it their life expectancy was under two weeks. Who was allowed treatment, and who died without it, became a question of scale and will, of the worth of a vulnerable life, of the rights of the chronically ill.
Between the 1960s and the year I was born, the process of getting dialysis was a nightmare. Panels at individual hospitals were created to assess those in need and choose who could have the treatment. Patients were evaluated by income, marital status, number of children they were supporting, physical strength, earning potential, age, weight, mental abilities. These Admissions and Policy Committees — sometimes called God Panels — were made up of ordinary community members, clergy, labor leaders, businessmen, housewives. “Agonizing practical decisions must be made,” Shana Alexander wrote in a 1962 Life Magazine exposé on the panels in one Seattle hospital. “[S]omeone must choose which one patient out of 50 shall be permitted to hook up to Seattle’s life-giving machines and which shall be denied.” The article was so incendiary that there was a subsequent NBC documentary and a mass outcry against rationing life-saving care. At the time, it cost $15,000 a year to save the life of a patient with end-stage renal disease, or ESRD.
The country was wrestling with what it meant to have a burgeoning ability to save lives, and no political will to protect them with universal healthcare or socialized medicine. In 1967, a federal committee recommended that the US amend the Social Security Act to protect patients with ESRD from the costs of dialysis. During the Congressional hearings, representatives heard testimony from Shep Glazer, a dialysis patient from New York. “Gentlemen, what should I do? End it all and die?” Glazer asked. “Sell my house for which I worked so hard, and go on welfare? Should I go into the hospital under my hospitalization policy, then I cannot work? Please tell me. If your kidneys failed tomorrow, wouldn’t you want the opportunity to live? Wouldn’t you want to see your children grow up?” During his testimony, Glazer was briefly dialyzed on the floor of Congress. President Richard Nixon signed the amendment into law in October of 1972, extending Medicare coverage to people with end stage renal disease. Some consider it the closest the United States has come to socialized medicine: comprehensive healthcare for a single organ.
At that same moment, Americans were wrestling with new ideas of interconnectedness and interdependency, and stretching to think about how our choices to protect public health overlapped with our responsibility to environmental health. While the debate about the worth and dignity of vulnerable life raged in biomedical ethics and political circles, a similar debate was underway in environmental ones.
In 1969, Time Magazine published a report on riverine pollution in Cleveland’s Cuyahoga River, which had recently and famously caught fire. “Chocolate-brown, oily, bubbling with subsurface gases, it oozes rather than flows,” the magazine described the river. “It is also — literally — a fire hazard.” With its round up of the grotesque (“animal grease balls as big as oranges”), the article was nearly as incendiary as the river pollution itself, and it changed the American conversation about clean water. The Cuyahoga River fire became linked in the public consciousness with the growing environmental movement, the revelations of Carson’s Silent Spring, and other environmental disasters that had littered the decade — 400 New Yorkers dead from smog in 1963, a 400 square mile oil spill in 1969 on the California coast.
By January 1970, as the public opinion in favor of action was increasing, Richard Nixon said in his State of the Union, “The great question of the seventies is, shall we surrender to our surroundings, or shall we make our peace with nature and begin to make reparations for the damage we have done to our air, to our land and to our water?” It was in this climate, in 1972, that the Clean Water Act passed. In his remarks before the Senate vote, the bill’s sponsor, Edmund Muskie of Maine, painted a dire picture. “[T]oday, the rivers of this country serve as little more than sewers to the seas. Wastes from cities and towns, from farms and forests, from mining and manufacturing, foul the streams, poison the estuaries, threaten the life of the ocean depths. The danger to health…can be anywhere.”
With the passage of the Clean Water Act, my family’s beloved sound had a chance at restoration. By 1980, the sound should have been seeing improvements from that regulation, but it was about to enter a period of terrible danger, red tides, hypoxia, anoxia, murkier waters, swimmers with rashes, that would culminate, though not end, with a mass hypoxic event in 1987.
An estuary is a singular ecosystem, as productive of life as a coral reef, a rainforest. The abundance of creatures stems from its richness in diatoms, single-celled planktonic algae, born in those liminal spaces between sea and land. As Thomas Andersen points out in his book This Fine Piece of Water: An Environmental History of Long Island Sound, estuaries are intense, alive places, “producing twenty times more organic material” than oceans. The name itself is a rolling thing, from the Latin estuare, meaning, he writes, “to heave, to boil, to surge, to be in commotion.” They teem with creatures in a food chain depending on richness: on winter ice that shears spartina grass off from the salt marshes, on those grasses floating into the sound and decomposing, adding food for diatoms who feed plankton, who feed larval fish and lobsters, who feed adult fish, who feed seals and whales. Estuaries can give a snapshot of oceanic health, help us predict what’s coming, but the subtle changes of a place or a body can go unnoticed, or can bloom and fade as disaster approaches.
A PKD kidney works not dissimilarly. The cysts themselves do not release toxins. A few of them are survivable. Many adults die of natural causes with cysts in their organs. Cysts themselves are uncomfortable, disordered, but not deadly. But as the disease progresses, they increase in number in the organs, and would be visible if the kidneys were removed from the body. If you dissect a PKD kidney, the cysts reveal themselves all through the organ, on every nephron, in tissue that is otherwise ordered, until they roil the body, enriching it with everything the patient eats, everything it cannot remove — all the things that made the body healthy are there, but in overabundance.
* * *
The clams in our bucket that day on the beach weren’t damaged by red tide, though they may have been filtering sewage, heavy metals and mercury and dioxin and PCBs and PFAS and DDT. I sat on the beach while my father sorted through the clams, watching the sun set, making drippy castles with the wet sand at my feet as I thought about chowder and the time we’d have in the kitchen, just the two of us, and how good it was when he had the energy I remembered.
I remembered him the year before, when he was still strong. I could still feel him lifting me onto his shoulders on that beach at sunset, walking to the water to point out sailboats he’d want if he could afford them. I remembered the song he’d taught me, “Simple Gifts,” the one he described the Shakers singing in ecstasy, in a trance while they danced in circles,
When true simplicity is gain’d,
To bow and to bend we will not be asham’d,
To turn, turn will be our delight,
Till by turning, turning we come ‘round right.
He made it look like a practice, turning and bending, ignoring pain and the future, his silence like a reed in the water. You lived with risk and fear, moved and swayed with it, courted it like a dancer in a Shaker trance, like a clam disappearing below the sand. You hid, you emerged, you waited out danger and suffocation for a moment of transcendence. He wanted me to understand that without ever saying a word.
It took so much to prolong my aunt Lois’s life, to save my father’s, to save the millions of people who have been dialyzed since 1960: the development of medical technologies, developments in plastics and metals, industry, connectivity, population growth, farming that enabled that growth, fertilizer that enabled that farming. It took so much to protect the Long Island Sound: the passage of the Clean Air and Clean Water Acts, changes to fishing laws and factory codes. It took the growth of the Environmental Protection Agency, which would trickle down to Massachusetts, where my mother would one day work for the state’s Department of Environmental Protection, cleaning up the water that flowed down the Connecticut River and the Housatonic.
My mother would go to school and become a hydrogeologist. She would recognize that the future of my father’s health — and possibly mine — required her to face the truth. His doctors would explain his illness to her when he couldn’t. Her research would teach her what was damaging the sound. Her job would provide the health insurance and income that would make up gaps in coverage to help pay for his dialysis and for the doctor who would tell me, years later, that PKD had come for me too. Legislation and hundreds of volunteer hours would slowly clean the sound. The sound would survive the red tides of the 1980s, the mass hypoxic events menacing all life in its waters the year that I turned sixteen and that Lois died.
Last year hypoxia came for the sound again, and the pandemic has shown how easy it is to write off the fates of people who are ill. Still, reports show the fight for the sound isn’t lost; whales were seen there last year, clams can be foraged, and alewives silver the rivers. And the fight to protect vulnerable bodies also continues, perhaps with clearer and greater stakes. We’ve seen what’s possible when we care for each other — scientific discovery, legislative protection, shared sacrifice — and who pays the price when we don’t.
But as the sun set that summer I was nine, I didn’t know any of this. I watched my father walking up the beach with the bucket.
“Ready?” he yelled, smiling. He was shimmering somehow, his freckles blending together to imitate a tan, his glasses glinting, lit from the golden hour. He held the bucket in his right hand, the delineated muscles of his forearm powerful. He was familiar. I was like him.
I nodded, “Ready!” But I wasn’t ready at all.
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