A family recipe, a childhood memory, a Depression-era handout
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My father, on his deathbed, asked if I had any regrets about our relationship. The cancer had taken most of his voice, so all he could do was whisper, “Regrets?” I tossed my head back and laughed. I said, “Oh, my God, Dad.” I laughed again. I did not, and do not, have regrets. Well, I suppose I regret that I cannot put this scene in a story because it is a cliché. (Who tosses their head back, anyway?) And I regret mailing the bitter letter I wrote to him before I attended his second wedding, when I was twenty-one. I wasn’t mad that he was getting remarried. It was just one of those times when my general anger at him boiled up.
His deathbed was a hospital bed. Thank you, hospice, for bringing the bed, the drugs, the nebulizer, the counselor, the medicated mouthwash for thrush.
A technicality: I was actually sitting on his deathbed, and he was sitting in his walker, which had a warning label that read, DO NOT USE AS A SEAT. I towered over him, my dad, small and hollow, without hair or teeth. Once six-four and 220 pounds, he was hunched over from the lung cancer eating up his chest cavity, his feet and ankles swollen with fluid. Fluid is part of the body’s defense system. The body fights to the end. The body opts for hope.
Years earlier he’d stopped washing or trimming his hair, slicking it back with oil instead. It had grown long and scraggly and yellowed, and I was embarrassed both by and for him. After he began chemo, his hair had fallen out in patches. I’d bought him a lint roller to help catch the strands. I was not sorry to see that hair go.
“Dad,” I said, “listen. You are you, and I am me, and we are who we are because of separate and shared circumstances. No regrets.”
He nodded. I patted his hands, which were warm. The hospice literature had told me the extremities might be cold. I read all the literature hospice brought: Give the gift of comfort and calm. Give them support, permission. Give them more than they gave you.
I always tell the dress story, as it is a microcosm of my father’s transgressions: My dad took me dress shopping for my freshman-year high-school homecoming dance. I did not have a date. No one had asked me. I was going with friends, and I was fine with that. Boys did not like me. They thought I was weird, and I probably was weird, and that was fine. Very fine.
We lived in Lake Havasu, Arizona. Our town had a Walmart and a Kmart. That was about it. The pretty girls had their parents drive them to Vegas or Phoenix to buy clothes. My dad took me to a strip-mall shop that sold off-brand girls’ clothing. I wanted a Jessica McClintock dress. The shop did not sell Jessica McClintock dresses. Seventeen magazine advertised Jessica McClintock dresses, so I believed a Jessica McClintock dress was the key to boys and popularity.
I tried on a blue cotton dress with pink flowers that I liked. This was the 1990s, when girls wanted big flowers on their dresses. I was fourteen and wore a size 12 due to a weight problem that would not go away for another two years.
I came out of the dressing room, and my dad looked me over.
“Maybe if you ate apples instead of cookies,” he said, “that dress would look better on you.”
New drinking game: Every time your dad destroys your self-esteem, take a shot. Every time someone laughs at the story of how your dad destroyed your self-esteem, take a shot. Every time the story falls flat, take a shot. Find the bad men and tell them the dress story. Listen to them say your dad sounds like an ass. Agree and laugh. Laugh and laugh and laugh. What a fucking asshole. Take a shot.
Join Team Mom. Decide Dad is the reason they got divorced. Feel it in your body: Dad’s fault. Dad hurts everything he touches, including himself.
Everyone who came into my father’s house in Phoenix had to look at the triangles on the wall: three of them he’d made from pieces of an old chair or a footrest or something. My dad would point to the triangles and ask what we could see.
“Christ, I don’t know, Dad. Triangles? Your woodworking skills?”
He’d shake his head. “Look closer.” My dad was into puzzles: not putting them together but making them. My dad was his own puzzle.
He never told us what the triangles meant.
After my daughter was born, while I was going through postpartum depression, I spent hours online “researching” child development. My sister was slow. What if my child was slow, too? I needed to know as soon as possible if she was, for the sake of early intervention. I looked for the signs of normal development. I waited for my daughter to roll front to back, then back to front; to sit up, speak, wave, and clap; to make eye contact. Make sure the baby looks you in the eye, the websites said. Make sure the baby smiles. My daughter smiled for the first time at three weeks. She hit the rest of her milestones on time.
Maybe the emotional disconnect I felt with my father — that most people felt with my father — was not his fault. I started to ask around: “What was my dad like when he was young? Did he have friends? Did he make eye contact? Tell me about his eye contact.”
He was kind of a “strange bird,” I was told. He “had his own way,” and that way was not often cute or charming. Later in life his way was heavy drinking, long periods of isolation, and saying what he thought, often without regard for other people’s feelings.
No one had ever diagnosed him with autism, but he could have checked every box on a list of symptoms I found online. I’m not saying he had autism. I’m saying he fit all the criteria. I’m saying that believing he did was the only way I could come to an understanding about who he was and hope to meet him halfway.
Summer break from college, 1998. I was home waiting for my boyfriend to call. I took the cordless phone off the cradle and made sure it worked. I put the phone in the middle of the table. My boyfriend was late in calling. A week late.
“What are you doing?” my dad asked.
I walked around the table, as if my walking around the table would send a cosmic message to this guy I’d been sleeping with, telling him to call. Maybe this weekend he and I would go out to dinner, hold hands in public. Maybe this weekend he would acknowledge me as his girlfriend.
My father was waiting for an answer. “My boyfriend—” I began.
“Boyfriend?” he said. “Who is he?”
I told him the boy’s name and a little about our relationship.
“He’s your boyfriend?” my dad asked again.
Did I need to spray-paint it on the wall? Boyfriend. Boy. Friend.
“He doesn’t sound like a boyfriend,” my dad said, “if he only calls once a month.”
“You do not get to tell me who is or isn’t my boyfriend, Dad. I know.”
My mother and I had already discussed this. She’d said my dad had been the same way when they were dating: Distant. Calling only when he felt like it or when he wanted something. Partying. Going out with other women. She said this had continued into their marriage.
But they had gotten married, I pointed out to her. So there was hope.
She reminded me that her marriage to my father had imploded.
The phone did not ring that afternoon. I was upset. Antsy. Angry. But mostly sad.
My dad repeated, “I do not think he is your boyfriend if he doesn’t call,” and he left it there. He walked away. Maybe to smoke a cigarette. Maybe to get drunk. Probably both.
Small-cell lung cancer. Aggressive.
My father and I sat in the waiting room before his first oncology appointment. The cancer-center waiting room was full of travel magazines: Got cancer? Go to Belize!
My dad motioned for me to lean closer. He told me it was not important for the doctor to know he had smoked almost his entire life. (He was sixty-nine.) He said it would not matter, that lung cancer was lung cancer. He did not want to be judged. (I already judged him.) He said he planned to tell the doctor he had quit smoking more than two decades ago.
During the exam the doctor pulled up my father’s lung scan and said my dad’s lungs looked like the lungs of a person who’d smoked for fifty years. My dad remained stoic. The doctor said he was not judging, but that my dad’s self-reported history did not match what he saw on the scan. My dad said nothing. I said nothing. The doctor ran down a list of my father’s ailments, including stage-III COPD — chronic obstructive pulmonary disease.
(After the appointment I asked, “Dad, how long have you had COPD?”
“About ten years,” he said.
“Ten years? Really? You had that diagnosis ten years ago?”
“My GP told me she suspected it, but I should get it confirmed. I never did. Didn’t matter.”
The doctor said he was surprised my father wasn’t on oxygen. My dad was often out of breath and used oxygen at night, a result of a sudden hospitalization a few years earlier for alcoholic hepatitis. I’d found out about the oxygen only because the supply company had called me one afternoon when they could not get in touch with him.
My dad was a laborer. He wore flannel shirts and trucker hats and always smelled like sweat, cigarettes, and beer. When I was a girl, he had a friend named Stan, and we would all go to Stan’s house to hang out. Stan had a dog named Ribs, or maybe Bones. Something to do with the skeleton.
Stan died in a drunk-driving accident: his car slid off an icy back road and into a tree. My mom told me that Dad was drunk at the funeral. He went drunk to the funeral of a friend who had died because he’d been driving drunk. My dad put a six-pack of beer and a hammer in Stan’s casket, which made Stan’s sister angry. She asked him to leave.
“Stan liked beer,” my dad said. “I want to send him off with something he liked.”
My dad sent me a text. He said he had thrown up in the car on the way to his radiation treatment.
I knew to expect this. Chemo makes you sick. But I had questions. I texted back: Threw up, like, you were sick and you threw up? How did you throw up?
He texted: I threw up. He’d used a cup of water to wash off the seats. He said he’d tipped the valet at the cancer center ten dollars. He usually gave the guy three dollars, but vomit got him ten dollars.
I needed to know the circumstances in which the throwing up had happened: Sudden? Succumbed to prolonged nausea? A lot? A little? It went away fast, or it still lingers? Just once, or did he throw up twice? Was it twice, Dad?
At his next oncology appointment I encouraged him to tell the nurse about the vomiting. She asked the same questions I had. His blood pressure was low. His skin was white. He said he’d been having trouble swallowing and sometimes choked on food.
(Our conversation when the nurse stepped out of the room:
“Dad, how long have you been choking on food?”
“A few months.”
“A few months?”
“I’m in decline,” he said. “I’ve been in decline for a long time.”)
The doctor explained to Dad that food sometimes went into his lungs because the mechanism in the throat that directs food to the stomach had lost function. The mechanism did not know what to do. It got confused and sent food into the lungs instead, causing aspiration pneumonia.
“Maybe this is it,” Dad said when he realized he couldn’t eat. “Maybe I’m done.”
His eyes went red and watery, but no tears fell. I patted him on the shoulder. I asked if he wanted to keep going, if he wanted to have hope. He said yes.
The solution for people who cannot swallow is a feeding tube inserted through their side into the stomach. My dad would get boxes of formula for nutrition, like an infant. The doctors also gave my father swallowing exercises to do, so that when he got better — when the massive tumor inside his chest disappeared from the radiation, and if the radiation itself did not cause permanent damage — then he could get off the feeding tube and start eating again.
Oncologists are the most hopeful people.
Once, my father left me a scathing, drunk voice mail. “How dare you?” he shouted. “What right do you have?”
I had left him a message first. I’d told him, via his answering machine, that my sister, at the age of twenty-five, had officially been diagnosed with “mild mental retardation” (now called “intellectual developmental disorder”). She was also on the autism spectrum.
I’d sent an e-mail to my family in which I’d laid it all out: Here was the reason why she is the way she is. Now we could get resources for her. This was helpful, and I was the savior.
They wrote back to thank me. I deserved to be thanked. I’d taken over and handled it because no one else could. Because that’s what I’d always done. That was my role in my family: I handled everyone’s problems.
My sister, who had always been slow and different, had not gotten enough attention or assistance in schools or society. In the early 1980s kids like her were vaguely referred to as “learning disabled” or “special ed.” Now, at the age of twenty-five, she’d been formally diagnosed. Diagnosis matters. You can’t deal with something if you don’t know what it is. I had pushed my mom to get my sister tested. I had not included my dad. His opinion did not matter.
Later I had copied my dad on the e-mail to the family, but he hadn’t responded. So I’d left him that message. He took issue with my saying my sister was “mentally retarded.” First he got drunk: his go-to fix. Then he called me back. I listened to his drunk voice mail. I cried into my hands, but I knew my dad was wrong for yelling, because I was the hero. I had done something no one else in the family could do. I deserved the love he did not seem capable of giving.
I got drunk and threw up and laughed about it to make sure everyone knew: the poison did not have the same effect on me.
My dad restlessly walked around his house at night, the at-home caregivers told me. He sat down on the couch and got up and walked into his bedroom and lay down and got up and told anyone who would listen that they needed to help him find his car keys because he had to go home.
When he said this to me, I asked him where “home” was, and he wrote down his address in Phoenix. I said, “That’s where you are. You’re at this house right now.”
Restlessness comes because the body begins to understand it is dying, but the mind cannot cope.
He tried to cut his oxygen tubing. He said he needed to cut the tubing to breathe. I told him no, it was the opposite. I took the knives from his house. I took the scissors. I drove around with his knives and scissors in my trunk for days.
The caregiver called and asked me to come over because my dad could not calm down. When I arrived, he was on his hands and knees in the living room. He said he was putting up his defenses. He advised me to protect my family.
He refused the anti-anxiety pills. I told the caregiver to put the medication in his feeding tube.
Before he decided to stop the cancer treatment and go into hospice, my dad and I were alone in his hospital room. I asked him what his favorite album was.
He asked why I wanted to know.
I said I didn’t know my father’s favorite album, and it was a thing I needed to know.
“Rubber Soul,” he said.
“The Beatles’ Rubber Soul?”
“How many Rubber Souls are there?” he asked.
I remembered in high school watching a Beatles documentary with my dad. I loved the Beatles. I wanted to go back in time to Shea Stadium and scream until I was hoarse and then get trampled to death. My mission was to memorize all the Beatles’ music. I asked my dad for Beatles CDs for Christmas that year. He bought me a Byrds album instead. He told me the Byrds were popular in the sixties, too. I listened to the album but didn’t like it, and later I traded it at a record shop for gas money. I put “Turn! Turn! Turn!” on his funeral playlist.
I stopped at my dad’s house after work and found him sitting at the kitchen table while the caregiver was busy in the kitchen. When he saw me, he stood up and drew his arm back. I hesitated. Did he think I was an intruder? Was he going to hit me?
No. He wanted to hug me.
My dad and I were side huggers at best. We sort of stepped into each other’s space and patted each other’s backs. He often slipped out of family events without saying goodbye to anyone — if he showed up at all.
But now my dad opened his arms to me, and we held each other for a long time, and, yes, here was the moment I’d wanted my whole life.
I touched my dad’s shoulder. “Dad?” He opened his eyes, but his brown irises were gone, replaced with milky blue. He turned his head toward me, like I had startled him.
“Dad,” I said again. “Dad. Dad.”
The hospice nurse said he was in the active dying phase. She administered morphine, and his expression grew calm. That was how she knew he was not in pain, she said. She told me it might take up to forty-eight hours, but not to be surprised if he died that night.
“Dad,” I said. He turned toward me again, like he’d heard a noise and wasn’t sure where it was coming from.
I called my aunt — my dad’s younger sister — and she came over. The caregiver was there, too, and we all sat around. Was this the vigil? It was 11 PM. It might be a long night. I wondered if I should get a few hours’ sleep in the back room. Not in his bedroom. He’d soiled his bed and sweat a lot. The mattress was stained. I could not sleep on a stained mattress. That mattress had to go. I mentally inventoried what else had to go and what could stay, what I did or didn’t want. Where could I sleep while he died? On his couch? At my house? Did I want to sleep while my dad died next to the caregiver he did not know well?
The caregiver put a blanket over him, and he was startled again. His body moved and jerked. He seemed very alive. The caregiver laughed. “Oh, dear, I disturbed him. He didn’t like that.” I laughed, too. We needed to laugh in the darkness. The caregiver said she’d been doing this for twenty-five years. She said it had taken five years for her to feel OK about “guiding people to God.” That’s how she put it. She said her job was to guide people out of this life and into the next. She said this like she was giving directions.
Good, because I could not guide my father into the next life. I could not even sit next to him as he died.
What would a good daughter have done: Sent the caregiver home? Taken over administering the morphine?
I touched his shoulder. “Dad?” I said.
He turned toward the wall, away from me. I laughed again. My aunt laughed, too. “That’s so Dad,” I said, “to turn away from me.”
“Some people want to be alone,” the caregiver said.
I thought about animals, how they crawl away under a bush to die. But he had changed positions as if he were sleeping, as if he were the most alive person in the room.
I went home around midnight and dozed for a few hours. When I woke up, I called the caregiver. She told me my father had passed moments ago. That is the word she used: passed. She said he had tried to get up at one point. He’d sat up, swung his legs around, and tried to stand, but she’d guided him back down. She was the guide, guiding. I was the daughter at home, sleeping.
After he died, there was no place for the bitterness to go. No place for the righteous sense of emotional abandonment. No dark, awful feelings to wrap myself in.
My dad’s second wife eventually left him. Or he left her. I think maybe they left each other.
He called me a few months after the divorce. It might have been a year. We went long stretches without talking. But this time he wanted to talk. His friend Charlie had died. Charlie and my dad had been hippies together. At fifty-five Charlie had dropped dead of a heart attack in his home. He’d lived alone.
Dad asked me to meet him at a bar, where he drank a pitcher of beer and said he was still mad at me from when I’d told his ex-wife that I thought he was an alcoholic. He said she had used it as a weapon against him when they argued: “Your own daughter thinks you’re an alcoholic.”
Like it was my fault they’d gotten divorced.
I did not look him in the eye. I spoke into the air, away from him, saying something about how I did feel like he drank too much, but I did not remember making that particular comment to his ex-wife, though it sounded like something I might say.
This is what I know: My father is dead. I am alive. He needed me. I needed him.
My dad and I enjoyed hiking together. We have the same-color eyes. He drank Miller Lite. He liked Kit Kat bars and strawberry-rhubarb pie.
My father was a heavy drinker. He smoked pot and cigarettes for fifty-five years. Being empathetic was hard for him.
His high-school buddies sent cards after he died. They spoke of him as a formidable character, a guy with an offbeat sense of humor, a teammate, a friend, a nice person.
I wrote thank-you cards and put them in the mail.
I found his high-school ring in a box of empty plastic bottles in the garage. The stone in the ring was loose. It rattled when I shook it. My father’s high-school diploma was water damaged and moldy. I threw it away.
His couch was stained with dried feeding-tube formula. His furniture was all hand-me-downs he had carried with him through a bunch of moves, end tables and shelves he’d made himself, a kitchen table with only three chairs. I donated it all.
I put my dad’s senior picture in a frame on my mantel. I stared at his young, clean-shaven face and tried to imagine what had broken him.
I found my grandmother’s music box, a laminated copy of a letter my grandfather had sent my father, a letter from a doctor who’d examined my sister as a child, a book about lesbian vampires, my grandfather’s model airplanes and old Navy hat, hundreds of matches, empty notebooks, sudoku puzzles, thirty years of tax returns, divorce papers (both rounds). I found the sheet music for Les Mis in his desk next to a tin whistle. In his nightstand I found a pack of cigarettes stuffed into a sock. I laughed and held them up to my husband. “Jesus Christ,” I said. “He lived alone. Who was he hiding these from?”
Stephanie Austin’s incredible “Something I Might Say” [February 2021] — about a fractured parental relationship and the quiet, empathetic moments that exist at the end of a life — was the best nonfiction I’ve read all year.
I gasped when I read the word autism in Stephanie Austin’s essay about her father, “Something I Might Say” [February 2021]. I felt astonished and grateful to finally find another who knows.
Like Austin, I, too, identify as the savior in my family after learning the one word that explains fifty years of stubborn misunderstandings, estrangement, and longing for a love that wouldn’t be shown even though it was there.
Autism can be a source of unspeakable misery when it goes undiagnosed. It is no wonder the logo for Autism Speaks is a jigsaw-puzzle piece. When you put that piece in its rightful place, the picture becomes clear.