We were halfway through a two-hour guided nature hike — “the Hawk Walk” — when my father stopped and said the three words that had always caused my sister and I to panic: “Listen to me.” Growing up, he only said it when there was an emergency, flinging open our bedroom door in the middle of the night.
“Listen to me: Uncle Al just passed out in his own urine.”
“Listen to me: Grandma Malke is having heart palpitations on the back porch.”
“Listen to me: The cage is open and there is no sign of the gerbil anywhere.”
Basically, buckle up.
We were in Tuscon, winding through the brush, dry, warm, full of citrus and sage. Cacti with multiple arms stretched toward the sun. Fragrant rosebushes, buzzing with hummingbirds. It was dizzying, magical. Back in Brooklyn where I lived with my husband and two daughters, winter had been a relentless wet slush of subway rides and Starbucks and day-care dropoffs. I’d been fighting with my husband, work was crushing me, and the desert sun felt like a dream.
A few months earlier I’d received an unusual call from my dad, offering to fly my sister and our families to Arizona for my 40th birthday that February. My dad did not particularly like to leave the Midwest, and he was not a fan of splurging on decadent vacations. The family tradition was to meet in Michigan on the Fourth of July: bratwurst barbecues, bike rides, lakeswims under the stars. Our Tuscon hotel, built in the 1930s, had an air of old Hollywood glamour with a heated pool and flowering orange trees. Pink stucco cottages, ornamental fireplaces, black olives and celery served on ice with every meal.
My dad, now profusely sweating, stopped walking and reached into his back pocket.
“I’ve been making a document,” he said, dabbing his wet brow with a blue bandana. He always had a blue bandana in his back pocket. “Called Death and Passwords.”
“Passwhat?” my sister asked.
“I started it last week. In Google docs.” I could tell he was very proud about that last part, the Google docs. “You never know what could happen. With my PV.”
PV, polycythemia vera, was my father’s strange blood disorder of almost two decades. It’s when your bone marrow produces too many red blood cells, which, in turn, makes your blood slow and sluggish, carrying less oxygen to your body’s organs. It was all very elusive. I knew he needed to sometimes get phlebotomies and that he gave himself shots in the stomach. He sweated more than most people and his spleen was sometimes swollen. He kept it all mostly to himself, this strange medical mystery. Truthfully, I tried not to ask too much. Who wants to know about their father’s spleen?
“Just share me on the Google doc,” my sister said. “I’ll review it next week.”
“Yeah.” I piped in, in typical little-sister fashion.
“Girls …” the tenor of my father’s voice deepened. “We need to talk to look at the doc tonight.” Up ahead, the tour guide stopped to show my children a cactus-root ball, nubby and unremarkable, like a miniature, unmoisturized beard.
He only called us “girls” under two sets of circumstances: Either we were in trouble — my dad was famously a very high-drama, catastrophe thinker — or when my brother was not around. My brother had stopped speaking to me three years earlier, some combination of me being an hour late to his wedding-rehearsal dinner and various childhood infractions. I learned about this hard boundary, this radio silence, on a Skype family-therapy meeting that my parents called after the wedding. My brother, they reported, was also angry with them, but he was really, really angry with me.
He should’ve been on the Hawk Walk. My brother loved birds. We both did. Once, hungover and hypomanic in the early aughts, we got matching bird tattoos. For his fourth birthday, I made him a hand-drawn book of birds, eight of them — painstakingly sketched in a No. 2 pencil, shaded with crayon — stapled together on construction paper.
“Gotcha, Dad,” said my sister. “We’ll review the doc after dinner.” She put it in her Google Cal.
“After dinner,” I repeated. But I’d actually stopped listening. I was thinking about my brother. I wondered if he still had the bird book I made him. I’d seen on Instagram that he had a pet hedgehog named Patty. I felt sad that I’d never met Patty, sad that my daughters didn’t even know they had an uncle.
A high-pitched squawking sounded overhead; we all looked up at the same time. A hawk glided above in the burnt sky, soaring, circling for prey. Its silhouette cast a shadow over my father, my sister, over everything.
For a long time, it was just my sister and I. Trading stories and Snoopy dolls and sticker books. We went to the same school, shared best friends (two sisters, who lived at the end of our block), and wore the same clothes — overalls, saddle shoes, and rainbow cardigans knit by our Nana. At night we’d play “Friends,” a game we’d invented that involved sitting on opposite sides of the hallway, surrounded by stuffies, pretending we were sailors who lived in adjacent lifeboats.
Our family of four lived on the top two floors of a drafty 100-year-old house in Lincoln Park in Chicago. My dad ran the PTA. My mom taught aerobics. We’d play Red Rover with other kids on the block, then walk to the bodega and buy Doritos. It was the ’70s, and in many ways, an idyllic childhood. The local librarian knew my name. In the summer, we’d bike to Cubs games; in the winter, we’d watch the Bulls. My parents grew their vegetables, collected records, and read the Chicago Tribune regularly.
But my father had a temper. You never knew what would set him off. Sometimes he’d pull the car over and scream if we forgot to brush our teeth. When our dog got run over by a taxi, he came home from the vet holding her collar and berated my mom for not washing the dishes the right way. I learned to listen for the way his footsteps sounded coming down the hallway — if they stomped, heavy and hard on the carpet, it meant someone was going to get it.
My brother was born ten years after my sister, when I was 6 years old. My father, striving and stressed, was making strides in his real-estate career, but the scene at home was tense. My mother was depleted and distracted. She’d lost a baby the previous year, plus her father, who’d died of a heart attack. Still mourning her sister’s suicide years before, she now had a very full plate and little time to process the pain of her past. When my brother was just a few months old, I remember watching her help him into his snowsuit at the top of the stairs, then helping me tie my shoe. In a split second, the baby, a solid mass of blue nylon, bounced down all 20 steps.
Holding my brother when he came home from the hospital was like holding a slice of the sun. I no longer cared about my Cabbage Patch Kid; the baby was my very own living doll. We were inseparable from the start. His first word was my name.
As a teenager, my sister was the most popular girl in school. Everyone compared her to Snow White: jet-black hair halfway down her back, porcelain skin, light-blue eyes. By then, she’d decided I was a loser. I was half her height and flat-chested with blue glasses and headgear. I spent most of my time talking to my turtle Dribble, reading Stephen King, and eating candy, hidden in my underwear drawer, from White Hen Pantry. She gave me the nickname “Gorilla Feather” and kept a padlock on her closet. If I wanted to borrow a sweater, I had to sign a contract swearing to God that I’d return it spotless within 12 hours.
As my sister and I grew apart, I spent more time with my brother. Our temperaments were similar. He was quiet, introverted and loved to read. When our sister left for college, we watched The Simpsons every Sunday night. We’d sneak down the street to Fiesta Mexicana and wolf down a nacho party platter before dinner. Once we went to a Teenage Mutant Ninja Turtle Convention.
He brought lightness to my otherwise challenging tween years. After finally making it to the A-team in gymnastics, I quit after my coach slid his hand up my thigh. In sixth grade, I got held down on the playground, beaten up, and called an “ugly Jew.” I was spacey, always forgot my lunch money, and constantly hungry. My school was underfunded, undersupervised, and corporal punishment was common practice. I remember once watching one of my teachers chase my deskmate around the classroom smacking him with a ruler while he sobbed.
I kept all of this to myself at home. My parents were busy and I didn’t want to upset them. But I had a lot of big, messy feelings, and I took them out on my brother.
When he was 3, I followed him around the kitchen with a knife, claiming that Freddy Krueger had possessed me. Once, when I was babysitting, I told him the phone would blow up in his face if he picked it up, then I walked to a payphone and called the house for hours. When he was 8 years old, I pressed on his throat until he fainted and heard voices. Once I locked him on the porch, in his underwear, during a snowstorm.
Still, we saved each other from the growing chaos of our house. My dad picked on both of us constantly, but at least I was old enough to leave when he was hard on me. By 16, I had my driver’s license and a best friend named Dennis who I spent most of my time with. But my 10-year-old brother was stuck at home, where my dad would storm into his room and demand to see his homework. He’d tell him he had a learning disability and would have to go to special school. He’d dump the contents of his backpack on the floor and scream: “What is the breakdown?”
The summer before I left for college, I was my brother’s camp counselor at the JCC. I remember watching the other kids pick on him and feeling scared about leaving, knowing I wouldn’t be able to protect him from my dad’s wrath. I was 18 then; he was 12 and suddenly the gap in our ages seemed huge. On my first Sunday of freshman year, I walked halfway across campus to find the only student lounge with a TV. There, sitting on a plastic chair, I watched The Simpsons with a boy named Carl from California. “I know it sucks being home by yourself,” I later wrote to my brother from my dorm room. “Just stick it out for a little longer. One day, you’ll be the head CD reviewer at Rolling Stone. Maybe we’ll sell a screenplay together about how fucked up the family is.”
In the middle of college, my father gathered all three of us together over Thanksgiving to tell us he had a blood disorder. It barely registered. He might as well have said he had a hangnail. By then, we were used to living in constant crisis.
In the fall of 2000, I moved to New York and started working in magazines. As I settled into my new adult life, my brother and I grew out of touch. By then I had a graphic-designer boyfriend who, like my father, had my terrible temper. In the airport taxi line on New Year’s Eve, when my brother, 15, was struggling to find the cab voucher, he blew up. “Don’t you dare fuck me,” my boyfriend raged in my brother’s face. I felt bad, but I didn’t stand up for my brother. Truthfully, I was scared. My boyfriend had gone to boarding school, had a studio in Soho, and his presence made me feel sophisticated and important. My relationship with my little brother seemed, well, little in comparison.
More years went by. My brother moved to Washington, D.C. He got a writing job. He got engaged. Suddenly it seemed like he was the one who had it all figured out. I’d broken up with my boyfriend and was living with two cats. I started calling him all the time for dating and career advice. We met up during the holidays in Chicago to catch up. But something was off — it was 2006 and the old neighborhood was now unrecognizable. Our house had been bulldozed and replaced by a McMansion. The Starbucks, where we now sat, awkwardly sipping coffee, had once been the bodega where I’d gone for snacks after school.
“I need a break from this,” my brother said suddenly. “You’ve been putting too many of your problems on me.”
He was thriving; I was not. My magazine career was in the toilet, and I was doing odd jobs to stay afloat. That fall, I had been a seater at a Baby Phat show during Fashion Week, which meant that I had to walk Brittny Gastineau to her chair before the show started. Eight months earlier, Dennis, my best friend from high school, had killed himself.
I considered all of this as my brother stood up, tattooed hands wrapped around a paper cup. At six-foot-two, he now towered over me.
“That’s not fair,” I started to say, but he’d already walked out the door.
After that, things went off the rails. I visited him a few months later in D.C. and made dinner for his friends. It was awkward and performative. I grilled him about his sex and social life and he accused me of meddling. Things between us remained strained until 2013, eight years later, when I showed up late to the rehearsal dinner because my daughter had puked all over me in traffic; I guess that was the last straw. After that, he iced me out completely.
He did agree to a phone call after a few years passed. He briefly met me and my kids in Michigan over the following Fourth of July, but it was tense. We mostly made small talk.
Then, suddenly, my father got sick — sicker. He no longer had just an elusive blood disorder; his PV had converted to leukemia and the diagnosis was unequivocal. If he didn’t get a bone-marrow transplant, he would be dead within six months. Weakened, pale, and in a wheelchair, he flew to New York, where my sister and I, stressed and shaken, had suddenly become his full-time caretakers.
I don’t remember how the conversation went, but at some point, my brother, who was now living in Canada, agreed to join us. One night in September, while combing the lice from my kid’s hair, there was a knock on the door of my Brooklyn apartment.
“Hey sis,” he said, dropping his duffel with a thud.
Prepping for a bone-marrow transplant is nonstop. Thursdays was chemo; Fridays we met with the hematologist; Mondays, the bone-marrow transplant specialist appointments; and on Tuesdays, the nutritionist and trainer checked in. In between, we were also dealing with Do Not Resuscitate decisions, insurance companies, legal paperwork, heavy end-of-life talks with the rabbi, and working full-time. We, as in my sister and I. The two of us did the heavy lifting while my brother came and went. He’d stay for a few days at a time then disappear.
The first week, he slept on my couch every day until two in the afternoon.
“It makes my kids uncomfortable,” I eventually told him.
But I was lying. I was the one who was uncomfortable; my daughters thought he was great. When they found out about Patty — “A hedgehog!” — it was like saying all of Disneyworld could suddenly fit in their bedroom. They’d already drawn tattoo sleeves all over each other in permanent marker to look just like him.
I kept things light. I was terrified if I said the wrong thing he’d shut down all over again. Plus, I knew he wasn’t in a great place. He was super skinny, post-divorce, chain-smoking, and smelled like a bar. At Thanksgiving dinner, two months later, he raged at my sister and I because we’d booked massage appointments without including him. I apologized but rolled my eyes inside the entire time. My dad, his thinning hair covered by a small cap, too weak to fight, to say anything, stared down his untouched plate of turkey.
When my dad’s health took a turn for the even worse, though, my brother stepped up. My sister left town for a few days over the holidays and the two of us were left to look after him over Christmas and New Year’s. We were stuck, quarantined, clad in hazmat suits and shower caps, in the bone-marrow transplant ward, watching my diminished dad sleep every day. It was a grim scene. Lots of adult diapers, bottles of Ensure, and blood transfusions.
One day, my dad started coughing. I mentioned the cough to one of the nurses, but she dismissed it.
“I’m concerned the nurse isn’t taking dad’s cough seriously,” I told my brother.
“Let me talk to her,” he said, and left the room. He came back with some tomato soup from the cafeteria.
“Sorted it out,” he said, handing me the soup.
“Thanks.”
It looked disgusting. The soup reminded me of red blood cells. I was grateful, though, for his kindness. It was such a small, sweet thing — a cup of soup. I couldn’t remember the last time someone brought me soup.
We sat in the room while the sun set. We talked about the time Grandma Malke had a heart attack while I was on acid. About the time my sister and I, at a booth in Howard Johnsons, made up the phrase “Rick Moranis ripped his anus” after seeing Honey, I Shrunk the Kids, and my brother laughed, then vomited Lucky Charms out his nose. About the doorbell of our childhood home that wasn’t a doorbell at all, more of a blunt staccato roar like the call of a rhinoceros.
“This is so nice,” I said. “I feel like it’s been forever since I’ve talked to anyone. All I do is work and change diapers. My ex and I stopped having conversations years ago.”
“Why?”
“I don’t know. He probably thought I was boring and dumb.”
“No way! You have such a great mind. Not asking what’s going on in your mind is like, I don’t know. Like paying a visit to Picasso’s studio and forgetting to ask about his paintings.”
Quickly, before he could see the tears in my eyes, I got up and threw my soup in the trash.
My father’s death was sudden but not fast. The cough turned into a hack, the hack turned into a virus, the virus became a coma. One afternoon we were sharing grape popsicles, lucid and bright, the next he was intubated and unrecognizable in the ICU. The first time I saw him after he fell unconscious, I didn’t know what I was looking at. Something gray and large with tangled-up tubes, a snout of hoses, protruding from a bruised, mashed-up face. Like an elephant who’d just been operated on.
Afterward, my siblings and I were left to sort out the logistics. How do you fly a dead body across six states? How many lox platters do you need for a three-day shiva? It all seemed gruesome and absurd. We cried. We laughed. But for the first time, probably ever, we were partners.
When the pink cloud wore off, my brother and I finally started talking. Why the years of radio silence? Was it the rehearsal dinner? Was it my self-centered 20s? Was it when I pretended to be possessed by Freddie Krueger? Was it all of it and none of it? I’d never heard my brother’s side of the story. Never heard what it was like, growing up gay in the shadow of a very heteronormative, patriarchal male figure. There were a lot of horror stories. I let him talk for a long time. I said sorry, he said sorry. I listened.
That was seven years ago. It’s a tough road, this ongoing conversation. We don’t always agree, but we agree to listen. And we agree on this: That old, cold house is hard to shake. Hurt people hurt people. For our stories to exist together, for us to take care of ourselves and each other, there can be no right or wrong. No denying experiences. Just memories, empathy, and reflection.
I still fight with my brother. The difference is, now we fight fast and move on. I’m almost 50, the same age my dad was when he got diagnosed with PV. It’s a genetic disease. What if I find out I have 20 years left to live? Do I really want to spend them angry, full of blame?
This past Thanksgiving, my brother promised to help me make the stuffing, but then he took a nap. When I asked if he could at least watch Futurama with my kids so I could finish the pies, he yawned and said no.
“I’m really mad at you,” I said before dinner. “It’s hard being a single mom sometimes. I could use some help.”
“Sorry,” he said. “I didn’t feel like watching Futurama.”
“Mm-hmm,” I said. My mom, who has Parkinson’s, shuffled by in her walker. Earlier this year, she fractured her spine in two places. I rushed her to the ER, googling “palliative care versus hospice” in the ambulance. At the hospital, I called my siblings from the hospital to review her DNR paperwork, and the circle started all over again. Only this time, we were all in it, together, from the start.
“Can you watch the girls tomorrow morning so I can go to yoga?” I asked.
“No,” he said. “I have plans. But if there’s time later I’ll try to take them to Cuddle Bunny.”
“What’s Cuddle Bunny?”
“It’s a place where you cuddle bunnies.”
I paused. I wanted to say: What plans? What could possibly be more important than hanging out with your nieces who you only see a few times a year?
Instead I said, “Remember that Cheri O’Teri skit from SNL?”
We both laughed. “Yeah, and that America’s Funniest Home Videos song: ‘What Part Of the Pig Does the Dog Come From’?”
“Remember when you asked Missy Elliot for her autograph and she ran away?”
Now we were really laughing, tears streaming down our faces.
“Mom, you look ugly when you laugh like that,” my daughter called out from her pile of Legos.
“I look ugly when I love like that?”
“Laugh.”
“Oh. Well, that’s because Uncle Yay Yay makes me laugh really hard.”
“Your face is bright red. You look like you’re crying.”
“Sometimes,” I said, “they’re the same thing.”
More From This Series
- To Care for My Family, I Thought I Had to Hide My Abuse
- How to Financially Plan for Taking Care of Your Parents
- No Longer My Mother’s Keeper