With a broken-down oven, in a hotel kitchen, on an uninhabited island
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My father says the fish are all dying. “Particularly the grouper,” he says, not looking up from the cards he is holding in his hand.
We have had this conversation before, many times, about the fish. Right now we’re having it in a condo in Florida where he and Allegra, my stepmother, have come for a while to escape the cold winter in Vermont. We’re supposed to be going out for seafood tonight, only there won’t be any fish on the menu, he says, because they are all dying.
“There will be fish,” I tell him, discarding a four of diamonds. “It’s a seafood restaurant.”
“Tilapia, maybe,” he says. His hand shakes as he reaches for the four and slowly brings it to the rest of his cards. “And that’s not real fish. Where’s all the grouper? Used to be I could get a grouper sandwich anywhere down here. Now, no grouper.”
“Maybe it’s out of season,” I say. But I know he’s right, that grouper has slowly stopped appearing on menus, that it’s disappearing.
My father has Parkinson’s disease. When his hands first began to shake, we thought it was just tremors. Grandma had tremors, so it must be just that. But it wasn’t just that; it was also everything else that came with the disease. The whole package.
Parkinson’s was new to us all. I bought a book. (I’m embarrassed to say that the first thing I did was look up hereditary in the index.) I joined an online newsletter. I regularly check two blogs. I follow Michael J. Fox on Twitter. I google a lot.
Our family is not new to illness. My mother died of breast cancer when she was in her thirties and I was fifteen. My brother, Dick, was seventeen; our father, barely forty. We know about medications and symptoms and diagnoses and prognoses. We know about shrugging off setbacks and grasping at hope and laughing at the right (and wrong) moments. We know life gives and takes and lifts you up and kicks you in the gut. But still.
“What goes best with tonic and lime?” Dad asks, looking up at me from beneath his bushy eyebrows. He smiles — a Parkinson’s smile, the top lip staying in place as the sides rise up just a hint. But his eyes are grinning. “Gin,” he says, laying the cards out in front of him.
Playing gin is what we did when we went on fishing trips to Canada. We’d fish all day for walleye and bass and then come back to the cabin cold, wet, and hungry. After walleye filets and fried potatoes for dinner, we would play cards until it was time for Dick and me to go to bed, exhausted, in the room we shared. Dad and Grandpa would refresh their drinks and keep playing. We could hear them from our room, their voices and the sound of ice in their drinks.
There were so many fish then. There’s a picture of us on the dock holding a string, me on one end and Dick on the other. There must be two dozen walleye and healthy bass hanging from the string — too many for us to ship home on dry ice, so we gave the extra to our guide. So many fish.
I add thirty-eight points to Dad’s side of the scorecard. “You’re kicking my ass,” I say. He gathers the cards and begins to shuffle, his hands clumsy, the cards slipping out onto the table. “Let me,” I say, but he says he can do it, that it’s his turn.
“Winner shuffles,” he says.
He used to call me Miss Every Other Turn because I had no patience when our family played board games. I would always think it was my turn, grabbing at the dice or reaching for a card. Maybe I was just selfish, but I think it had more to do with control. When it was my turn, I was in control of the game, of the cards, of the dice, of the attention, of everything.
I could say that Dad’s not old; he was in his fifties when he was diagnosed. I could say that his case will be different, that he has so much more to give to the world. I could say that it’s unfair, that he doesn’t deserve this, that Parkinson’s sucks, that he’s way too funny and smart and kind.
And I do say all of that.
But every other child of a sick parent could say the same thing. Getting sick is commonplace. In the U.S. alone, each year sixty thousand people are diagnosed with Parkinson’s, five hundred thousand with Alzheimer’s, and almost two million with cancer. Our parents are supposed to die before us. But the thing is, what may be completely commonplace and expected statistically and biologically is at the same time a completely unique personal disaster. This is our earthquake, our tsunami. There is absolutely nothing common or expected about it. And, worse, there is nothing I can do to control it.
Dad’s right: there’s no grouper on the menu at the restaurant. He tries to ask the waitress, but she doesn’t understand what he’s saying. It’s too loud, he can’t quite get the words out, and she’s in a hurry.
“What kind of fish is in the fish sandwich?” Allegra asks.
“Tilapia,” the waitress says.
We all end up getting grilled mahi-mahi, which is on every menu everywhere.
“What about that?” I ask Dad. “The mahi-mahi seem to be doing well.”
He says the restaurant is probably lying, that it’s all just farm-raised Midwestern fish being passed off as mahi-mahi or redfish or snapper. Then he says, “Just wait. It’s only a matter of time before all the fish are gone.” His words don’t come out smoothly. He’s tired, hasn’t been sleeping well, a side effect of either the disease or the medication; it’s impossible to tell which and ultimately irrelevant.
Over the past few years I have quoted articles about fish recovery for him, about amazing things naturalists are doing to bring back the salmon and reintroduce native species of trout. But he comes back with news stories about pollution and global warming and overfishing, about dams being built and invasive plant species. I tell him that the walleye are OK in Canada, and he tells me the camp we used to stay at has probably closed down: not enough fish, he says.
Back at the condo we take out the cards. He deals. “Just a few hands,” he says. “I don’t want to keep you up too late.”
But I will play cards all night if he wants. I will never sleep again if he can stay awake across from me. I will play cards and talk to him about Canada and the dogs we once had and politics and food and fish and whom he has loved and where he lived and everything and nothing.
Things I remember:
He used a combination of uppercase and lowercase letters when he wrote.
When I was thirteen, he watched The Man from Snowy River with me five nights in a row.
The first night we stopped being vegetarians, a few months after Mom died, we made hamburgers and ate them until we got sick.
Once, we tailed my mother and grandmother around Lawrenceburg, Indiana, for three hours as if we were spies. We ducked into alleys, dashed across tracks just before the train came through, and hid behind cars. They never saw us, and we never told anyone.
Back in Vermont, we sit at the counter in the kitchen, like we do every Tuesday afternoon, which is when Allegra stays late for a board meeting at the school where she is principal. I come over after work, and Dad and I sit together, eat dinner, play cards, and watch TV.
Today we are staring out at the snowy backyard as he tells me about a traveling group of performers who have made their home there for the past year or so. He sees them as clearly as I see the trees and birds.
He points to the left side of the yard, where he says a group of children are playing while their parents climb the trees. I ask him what else they are doing, and he looks at me, disappointed.
“You really can’t see them?” he says, then turns back to the yard. “They’re getting ready,” he says. “Except that one,” he points beneath a tree but doesn’t elaborate. He’s never been an elaborator.
Recently the doctors added Lewy body dementia to Dad’s diagnosis, which has helped explain his hallucinations. He knows they are hallucinations, but they are so vivid and consistent that he gets frustrated we can’t see them as well. It’s always a troupe of performers in the yard, and they are always busy preparing for something. (At a Parkinson’s convention in Ottawa, Canada, a year later, I will hear a neuropsychologist talk about how common it is for people with Lewy body dementia to see traveling performers, and it will make me cry to know he wasn’t alone.)
I go to get us a seltzer from the fridge, and when I return, a red-tailed hawk is killing a pigeon in the yard. I look at Dad, who is clearly watching it as well.
“Do you see that hawk killing the pigeon?” I ask, as the hawk clamps its talons over the bird’s small body.
“Do you see it?” he asks me.
“Yes, it’s incredible! Look at it!” I’m laughing, even though it’s not funny.
We sit and watch the hawk eat the pigeon, tearing it apart, its head dipping and yanking, feathers pulled and strewn about, the snow gradually turning red, then pink. We are unable to turn away.
When the hawk flies away at last, Dad turns his head to me. “You really saw that?”
“Yes,” I say. “Want to go out and have a closer look?” He hates the cold, but the chance to see what’s left is too good to miss, so we spend the next twenty minutes getting ready to go outside. I imagine this must be what it was like when I was little and he had to dress me for the snow: first the boots, then a parka, then mittens, and finally the only hat he will wear, a beanie with the logo of Northeastern University, the school where my little brother, Peter, Dad’s son with Allegra, goes to college.
Outside, we stand in the snow and look down at the remains. The pink has turned mostly brown, but a few drops farther from the center are still red. There are so many feathers. Dad reaches down to pick one up, and I grab his hand.
“We can’t leave it here,” he says. “Louie will eat it.” Louie is the dog, asleep on the couch, happy to be warm. Dad’s right, but we also can’t just pick it up with our mittens.
“I’ll get the shovel,” he says. “You get a bag.”
I know that I should take him back inside and then come clean this up on my own, but instead I ask whether I should get a grocery bag or a garbage bag.
“Garbage,” he says, and he starts toward the garage.
When I get back outside with the bag, he has almost made it to his destination. He bends to grab the garage-door handle. I imagine him falling but stay where I am. He pulls the door up and disappears inside. I imagine the ladder that is propped against the wall toppling on him. A moment later he comes out with the shovel. I imagine him tripping and hitting his head on the corner of the fence. He makes his way slowly across the yard to where I’m standing over what’s left of the pigeon.
I crouch and hold the bag open. He slowly shovels snow, bits of pigeon, and feathers into the bag. Even after the pigeon’s remains are gone, he keeps shoveling. The bag fills with snow and dirt from beneath the snow. Finally he stops.
“Done,” he declares, and he turns back to the house. He lets me take the shovel, and I set it and the garbage bag outside the door; I’ll come out later and put them away.
Back in the warm kitchen, we sit for a few hours, playing cards, eating dinner, and laughing as we retell the story of the hawk and the pigeon. It’s a story we will tell over and over for years, until we forget to tell it anymore.
When I was sixteen, my friend Heidi and I got drunk just before our families had Thanksgiving dinner together. I threw up at the table, and Dad told everyone I had the flu and put me to bed in Heidi’s room. The next morning he woke me at 5 AM to clean the garage.
When I had nightmares, he would slowly rub my back and sing Simon and Garfunkel songs to me until I could breathe normally again.
Out in public he used to hike his pants up as high as they would go to embarrass my older brother and me.
We bought a convertible together when I was seventeen. My share came from the Social Security money from my mother’s death. It was a 1973 banana-yellow Alfa Romeo. We drove it to Saratoga to see the horse races, and the whole way there and back we listened to the only cassette tape in the car: the original-cast recording of Man of La Mancha.
The first time he falls on my watch, we are in the kitchen. It’s Sunday morning, and Allegra is out running errands. Dad and I spent the first few hours together in the sunroom, where I read aloud to him the latest Jack Reacher thriller as he drifted in and out of sleep. He’s been sleeping a lot lately, except at night when he should be. Allegra tells me he gets leg cramps so bad he wakes up screaming. Sometimes he wakes up thinking there are people breaking into the house with guns.
This time of morning — after his nap and right before lunch — is usually his most lucid. He asks me about work or about Bill, my husband. He thinks Bill is hysterical. Once, I told him about how Bill and his friend Kevin had spent three hours digging holes for a foundation, and then the contractor had shown up and told them they’d done it wrong. So they’d spent the next few hours filling in the holes. Dad laughed so hard. Now he asks me to tell him about Bill and the holes almost every time I see him. When Bill is with me, he tells the story, dragging it out, adding new details: how hard they worked, how deep the holes were, how much they were sweating, how hot it was. Dad laughs until he cries.
We’re getting ready to go for a walk. We’ve just put on our outside shoes, and Dad is holding on to the counter, standing solidly when I tell him I’ll be right back; I just need to grab the key.
One of the rules of caretaking — which Allegra told me weeks ago — is not to try to stop someone who is falling. You can get hurt yourself. Instead you are supposed to anticipate the direction of the fall and protect the person’s head as much as possible. Allegra is a master at this. Dad has been falling a lot lately. So far he’s had a few bruises, but otherwise he’s OK. Allegra can sense when it’s going to happen and positions herself just right, pushing Dad up against a wall so that he slides down rather than falls, or putting her body between his and a table, or sometimes just holding his hand as he goes down.
I don’t anticipate this fall. One second Dad is standing solidly, holding on to the counter, still smiling that Parkinson’s half smile from the hole-digging story, and the next his legs just give out. I hear his head hit the refrigerator, then the kitchen floor. (I remember being twelve years old and standing over my mother, who was lying on the bathroom floor, resting after throwing up due to her chemotherapy. I had gone into the bathroom to get a drink of water from the tap, and there she was, completely still, her headscarf next to her, her cheek against the linoleum. A moment later Dad was next to me, his hands on my shoulders, guiding me back into the hallway, telling me it was OK.) I am on the floor next to him. He looks scared. His eyes are open wide, but he doesn’t say anything.
“It’s OK,” I tell him. “I’m right here.” I am running my hands over his body, straightening his legs. “Are you OK?”
He doesn’t answer, but his eyes move, which I take as a good sign. I tell him to lie still. I can hear Allegra’s voice in my head telling me not to try to get him up. “Just sit with him,” she said. “He’ll be scared, so he’ll need a minute.”
I say to Dad, “We got this” — a common phrase in our family, one Allegra, Peter, and I say to each other all the time — but then I see blood start to drip from his ear. I am sitting with my back against the refrigerator, holding his hand. I know I need to be calm, but there is blood coming from his ear, and all I can think is that his brain is bleeding. For a moment I’m not sure I can handle this. I’m forty-eight years old, but in an instant I’m also five and ten and fifteen years old, looking for the person who helps me deal with hurt. But that person is lying in front of me, bleeding. What would he tell me to do?
I tell him there is blood coming out of his ear — just a little, nothing to worry about, but I think I should call Allegra. “Good idea,” he says, and I am so relieved to hear his voice.
Allegra and a neighbor who’s an ER doctor arrive ten minutes later. I have wiped up the blood and discovered it is coming from a cut on the outside of his ear, not from within. He and I are both lying on the floor, and I have put a pillow under his head. When they come in, we are listening to Gene Pitney sing “The Man Who Shot Liberty Valance” on my phone.
Later, after the neighbor has examined Dad and put a few stitches in his ear, I tell Allegra about what happened. Dad is on the couch, asleep, his head tipped back and mouth wide open. We have moved into the kitchen, and Allegra has opened a bottle of wine. I have a beer.
“I didn’t even see it coming,” I say to her. “It happened so fast.”
She takes a sip of her wine. “He falls,” she says. “That’s what he does now.” She is calm, steady, grounded, a breakwater protecting us all from the open sea. “It gets easier,” she says, and then, smiling, “We got this.”
I’m pretty sure we both know that’s a lie.
He knew all the words to every Gene Pitney song.
We watched Peter’s college graduation from a laptop in the living room. Allegra was there in person, but we stayed home because travel was too hard. We both wore Northeastern T-shirts and hats, and when they announced Peter’s name, we stood and clapped.
During the Teamsters strike in 1979, he woke me and asked if I wanted to go fishing instead of to school. He wrote a note saying I was sick and sent it in with Dick, who didn’t want to miss school. We spent the day fishing for pike on the Winooski River.
The first Christmas after Mom died, he bought me a dress. I was sixteen. It was a full-length, long-sleeve turtle-neck dress from L.L. Bean. He was nervous when I opened it, said he’d picked it out himself, that I could return it if I hated it. I told him I loved it.
When he can no longer play cards — because he can no longer reliably remember the rules he has known since he was a boy and taught to me before I had memorized my times tables — we start building model cars.
Our first kit is a Pontiac GTO, Level 2 difficulty, which means no paint, no glue, no tools, just parts we can snap together. He holds the yellow car body while I read the directions out loud. There are only a dozen parts, including the black plastic tires and the silver hubcaps. I hand him the tires, then pick them up off the floor when he drops them. It takes us an hour, but we build it. When we’re done, I hold it up, proud, celebratory.
“Cheap-ass Pontiac,” he says.
Each week we build another car and order a new one. Allegra clears out a shelf in the sunroom so we can display them. We get pickier, scrolling through pages of options, sticking with Level 2 builds. We buy a ’63 Corvette, a ’68 Shelby Mustang, a ’53 Ford F-100, a ’69 Camaro. When we run out of classic American cars, we order others he’s less excited about: a Lamborghini, a Ferrari, a Porsche.
While we build, we talk about cars — or, rather, he talks about cars. He tells me about the Triumph he had, tells me the eighties were a bad decade for American cars, tells me it’s stupid to lease a car. As the weeks go by, he lets me do more and more of the work. He tells me things about cars that I never knew he knew.
“The 1956 Chevy Corvette was the first model to come with a hardtop.”
“Porsche designed the Volkswagen Beetle.”
“The 1974 MG was the last good one.”
“The Jaguar E-Type was the first car to do zero to sixty in seven seconds.”
Dad taught me to drive in 1986, the summer after Mom’s death. We had an old orange Ford pickup truck with a stick shift, a bench seat, and an eight-track player. I lurched around on the dirt roads as he told me to push in the clutch, let off the gas, shift up, let off the clutch, give it gas. I liked the predictability of it, the rules that eventually became muscle memory. This was the same orange truck he’d used to haul the small aluminum fishing boat, the same truck we’d ridden in the back of to see fireworks, and the same truck we’d used to pick up the hay for my pony. We would drive to the farm at the end of the road, and Dad would toss the bales into the bed of the truck, where I would slide them into place. When the bed was full, I would climb on top, and we’d add another layer, and another, until the bales were stacked higher than the cab.
Our last model-car kit is a 1960 Volkswagen bus. We open the box and spread the pieces on the kitchen island, where we sit facing the backyard. There are so many pieces, more than our other builds. Dad’s already tired. He had a rough morning. Allegra is at the grocery store. She was concerned about leaving us, told me he has been throwing up, can’t keep food down. He’s been sleeping all morning, not making much sense. She looked tired. Peter and I have been worried about her. We talk on the phone weekly, check in on each other from afar: me here in Vermont, him in Boston. (When Peter was five, he brought me to his kindergarten show-and-tell day — I was almost thirty, and he was obsessed with a small scar I had on my side. The show-and-tell days were sponsored by letters, like on Sesame Street, and his day fell on the letter S. He introduced me as his Sister who had a Scar on her Side.)
I tell Dad it’s OK, we don’t have to build today, but he reaches for the body of the bus. I hand him the chassis, show him how to snap it to the body. He turns it over, taps it against the counter, uses it to push the tires and hubcaps around. I try again, gently taking his right hand and bringing the chassis to the body. He bangs them together.
“Want me to take over?” I ask, but he doesn’t seem to hear me. He just keeps banging the parts together.
Some days are like this.
When I was twenty-four, I called Dad from the kitchen of my apartment in Seattle, where I had been living and waiting tables for a year. I was out of money, lonely, and hungry. I told him I wanted to come home. Even though Peter was just a baby and work was busy, he flew out the next week so we could drive across the country together. I had a 1982 Volkswagen Jetta, the first car I’d ever bought with my own money. I had paid two thousand dollars for it. Six hours into the drive we stopped to get gas in eastern Washington. It was August, almost a hundred degrees out, and my car had no air-conditioning. My nine-month-old dog, Maggie, sat in the backseat, drooling with car sickness. Dad filled the tank and climbed into the driver’s seat for his turn. The car wouldn’t start. He tried again.
“It’s OK,” I said, opening a bag of chips. “It does this sometimes.” From the backseat, Maggie started gagging.
“How do you get it to start again?” he asked, both hands on the wheel, looking straight ahead.
“Eventually it fixes itself,” I said. “We just have to wait.”
“How long?” he asked.
“No more than a couple of hours,” I said.
We told this story all the time, about how nonchalant I was; about how angry he was that I had forgotten to tell him, before a three-thousand-mile road trip, that my car just stopped running every few hundred miles.
I finish building the Volkswagen model by myself after Dad goes to sleep in the living room. From the kitchen I can hear him breathing. I ignore the instructions, snapping pieces together where they fit, putting the tires on, snapping in the hubcaps, adding the pop top and the bumper last. I have a few pieces left over, but I don’t have the energy to figure out where they go.
His favorite book was Lonesome Dove.
He loved key lime pie.
I was in college when Dad and Allegra called to tell me she was pregnant, and I was going to be a big sister. I screamed into the phone and jumped up and down.
When I was seventeen, he sent me to the store to buy orange juice. He gave me five dollars, and I bought a scratch-off lottery ticket with the change. I won a hundred dollars. For years we debated whether the money was his or mine.
He sang “Sentimental Journey” with his sisters the last time they were all together, before the pandemic. It was their mother’s favorite song. They all remembered the words.
The few hospice nurses who are allowed in the house wear gloves, masks, and face shields. When they’re there, we wear masks, too. There are so many rules: stay six feet apart, sanitize your hands before and after everything, no touching, masks on at all times. Allegra, Peter, and I don’t leave the house except to run to the store for food or to walk the dog, which we do wearing masks. When it’s just us, we take them off.
We spend a lot of time on the phone with the people who can’t be here because of the pandemic, people we love and who love Dad: Dick and his family outside D.C., Dad’s sisters in New Mexico and Illinois, Allegra’s family in Virginia and New Hampshire, Peter’s friends. My husband comes by as much as he can, but he has to keep working, keep our animals fed, keep our house running. He brings food every day, and sometimes he brings his guitar and quietly sings Neil Young songs by Dad’s bed.
In addition to the global pandemic, there are 416 documented disasters around the world in 2020. On January 1 floods in the capital of Indonesia kill sixty-six people. On January 12 twenty-five thousand people have to evacuate their homes in the Philippines because of volcanic eruptions. On January 14 a hundred people are killed in avalanches in Kashmir. On January 24 an earthquake in Turkey kills forty-one people and displaces thousands. In early February locusts swarm East Africa, devouring crops and threatening the food supply for millions. On May 20 a cyclone in India and Bangladesh kills eighty-five people. On May 27 the COVID death toll in the U.S. passes a hundred thousand. On July 7 thousands of dead fish are found floating in the Hudson River, suffocated by the lack of oxygen in the water.
On July 23 Dad dies.
Dad lived with Parkinson’s for almost fifteen years.
Recently someone asked me if he died of COVID, and I said no. She said, “Well, that’s good anyway,” as if there were a hierarchy of ways to die and his were somewhere above COVID. I imagined a committee sitting around a table, arguing about whether getting hit by lightning was better or worse than starvation, whether a bear attack came above or below breast cancer, where Parkinson’s and dementia fell in relation to dying alone on a breathing machine or in a forest fire or suffocating from a lack of oxygen in the water. I don’t know whether it matters much which is worse.
I do know that to have a degenerative disease is to lose and lose and lose: abilities, memories, jobs, hobbies, friends, places, freedom. I know that to love someone with a degenerative disease is to feel those losses every day, to fear them, to plan for them, to be shocked by them.
I have a video I took on my phone of Dad and Allegra playing the piano together about a year before he died. It’s Christmas, and the whole family is at the house. In the background you can hear laughter coming from the kitchen, voices telling stories, catching up. Allegra and Dad are sitting on the piano bench. She has put colored stickers on some of the keys, and as she plays “The Impossible Dream,” you can hear her quietly saying to him between notes, “Red. Yellow. Red. Blue.” He is focused on the keys, his finger poised until he hears which color, and then he brings his finger down, slowly, and plays the note. The song is choppy, the rhythm is off, and it’s beautiful.
Emily Rinkema’s essay about her father’s Parkinson’s disease [“Between Notes,” November 2021] made me think about both my dads. My father is prone to falling and is losing himself to dementia. My stepfather, who raised me, now shuffles along with early Parkinson’s.
I have never spent a day just playing cards and telling stories with either of them. After reading Rinkema’s piece, though, I feel a need to do just that before it’s too late. Her story is making me a better daughter.
I wish I had read Emily Rinkema’s “Between Notes” [November 2021] fifteen years ago, when my father’s health was failing from Parkinson’s disease. I did not know how to sit with him or how to honor him and his declining condition. Every moment with him dragged on as I clumsily tried to connect in ways he no longer could. I’m sad I missed that opportunity, but reading about the beautiful relationship Rinkema had with her father comforted me.