My parents came home from Tucson in early June 1996. By then, my father could barely walk. He used his chairlift to take him downstairs and upstairs, but he could no longer make it up and down the steps in the basement, where his beloved music and home-theater system now languished. He was becoming increasingly depressed. Jimmy and I drove to Best Buy and bought him a small stereo to listen to in his upstairs office.
When he dies, I caught myself thinking, I’ll take this little stereo to school with me.
One day after my parents’ less-than-triumphant return from Arizona, my father announced that he wanted the four of us to go for a walk. It was a perfect summer afternoon. The air was warm but not hot. The low humidity was some kind of Ohio miracle. We helped my dad into the chairlift, and Hilary carried down his wheelchair. Outside the kitchen door, she wheeled him down the newly installed ramp in the garage and down the driveway.
We walked up our street, away from the house my parents had bought twenty years, earlier in 1976. My parents told us the story of driving around the strange new neighborhoods of Columbus’s east side when my mother was pregnant with me. They had fallen in love with the red brick of this house, and its welcoming white porch. They especially loved the neighbors, almost all of whom we remembered by name. We walked by the Mirvis house, where the Shkolnik family used to live. Hilary and I would knock shyly on the door to see if Todd and Josh could come out and play tag on summer nights, along with Maxwell two houses up and Michael and Sean across the street. We strode by the Olivers’, where Mrs. Oliver used to let us pick a flower from her spring garden. We walked past the Spatts’, whose youngest daughter, Jodi, used to babysit us, and up to Jimmy and Jackie’s house, where we still spent a lot of time. We stopped at the top of the block and I took a picture of my family: my dad in his wheelchair with Hilary’s hand on his shoulder, my mom beside them. Everyone is smiling.
That night, my father couldn’t breathe. My mother called 911. Emergency trips to the hospital by ambulance had become pretty much routine for us. The drivers asked the same questions they always did. Whoever rode with my dad that day provided four years’ worth of flimsy answers to the EMT: No, he isn’t geriatric. He’s forty-nine. Yes, his heart is strong. No, he doesn’t have a diagnosis. Yes, you should give him oxygen. No, he isn’t mentally impaired. Yes, I said forty-nine. No, he can’t answer your questions, because as you see, he can’t breathe. Yes, that’s right. No diagnosis. Then there was nothing more to say that my father’s racking gasps for air didn’t articulate better.
Eleven
By August, my father needed to be intubated. He had all but moved into the ICU. I, on the other hand, was serving ice cream. My best friend, Amy, got me a seventeen-day job at the Ohio State Fair, less than a mile away from the hospital. We worked in the dairy building. I woke up and drove myself to the crowded fairgrounds wearing a cow-print baseball cap, oversized white “Dairy Barn” T-shirt, and whatever shorts were the least covered in ice cream from the day before. There, I spent the day serving dairy products to warehouse-sized crowds.
The rules of the dairy building were simple. Show up every day for the whole length of the fair day—nine a.m. to ten p.m. Wear the funny cow-print uniform. Sell the food.
Amy’s brother, our manager, agreed that I could leave the job and come back when I needed to visit my father in the hospital. There, I usually sat beside my father’s still body and watched TV. Sometimes, if he woke up, we tried to communicate. He opened his eyes wide, momentarily battled the machinery forcing air directly into his lungs, and reached for me. I rubbed his head and reminded him of where he was.
I never wanted to leave the fair. My job there, despite the horrors awaiting me at a nearby hospital, or perhaps because of the juxtaposition of them, was truly one of the greatest experiences I’ve ever had. I was working alongside my friends, Amy and my other best friend, Jason, who was also working there. We were joyously together, surrounded by fair rides, games, and junk food. We wore our ridiculous work outfits, chose the music to blast, and flirted with an enormous thirty-to-forty-person staff, all of them our age, mostly lesbian members of another manager’s baseball team—although none of us was specifically a lesbian. Amy, though, did nurture a flirtation with a very cute skater named Erica. Jason, who is gay, started seeing one of the only other men on staff who was too.
And I met Jeromy.
Out of the gate, I couldn’t get a handle on the crush that took the wind out of me and explained, in stark relief, why we call these infatuations “crushes.” It made kookaburra look downright tranquil.
Jeromy, like me, didn’t follow the all-day rule of the dairy building. He’d been working there for a long time, and had some leverage. By day two of the fair, I sat out back on the milk crates and waited for him to arrive, smoking compulsively until he did. I was a walking lovestruck cliché, unable to eat, overwhelmed by the blood that filled my face whenever he spoke to me. The only thing I had going for me was that the feeling seemed to be mutual.
Our conversations mostly sounded like grunting. “Cool,” I’d say in my cow-print baseball cap. “Yeah,” he’d agree, clearing his throat.
We smoked and we talked poetry, which was as fine a basis for love as anything else during those seventeen days. Jeromy was the first person I had ever met who had dropped out of college and was proud of it. What’s more, he had done it after nearly four years of attending. He was smart. To a confused, twenty-one-year-old English major, he was borderline genius.
At some moments, I believed he was Jack Kerouac reincarnated. He was a skeptic, and he pulsated with rebellion. With his white T-shirts, cigarettes, and short dirty-blond hair, he looked a little bit like James Dean. His blue eyes never seemed very far from tears. He was quiet and hyperfocused. It felt good to get caught in his gaze.
To be fair, if Charles Manson had walked into the dairy building that day instead of Jeromy, I might just as quickly have asked to sign up with the Manson family. I was ripe for a cult—any new system of belief I could get my hands on. Jeromy grabbed hold of my flimsy belief system and began to reshape it with his monologues about “society” as a construction rather than an immutable fact, and how “Do you believe in God?” is as dumb a question as “Do you believe in the conversation you are having about believing in God?” Because there it is, God and the conversation, whether or not you believe in them. I found myself stricken with awe every time he spoke.
One day I offered him a ride as he was leaving. It turned out he had another job in the kitchen of a nearby bar and grill. On the drive over, I told him that my dad was dying. He just sat there, reassuringly unfazed. Death didn’t shock Jeromy. Or scare him. Unlike everyone else my age, who suddenly lost the ability to make eye contact with me when I said my dad all but lived in the ICU, Jeromy’s reaction was unconventional. When I told him how hard we’d been fighting for my father to live, he responded simply, “Why?”
Death, this thing that had all of us running so scared, Jeromy found inspiring. To him, the reality of death posed a possibility. It was a reaffirmation that nothing mattered, that in the end, we were all worm food anyway. He was nonchalant about it, so much so that he didn’t seem cynical—he seemed matter-of-fact.
* * *
By the last day of the fair, two weeks since we’d met, Jeromy and I were on the verge of becoming a couple. He had broken up with his girlfriend of two years, and I had professed my love.
After the end-of-the-fair party, he accompanied me to the hospital, where we stood together over my father’s body, asleep and unmoving in the eternal twilight of the ICU. I looked over at Jeromy’s sincere gaze as he looked at my father for his first and only time. His expression wasn’t pitying or callous. He didn’t say a word to me or to my dad.
Jeromy was a kind of antidote to my father’s dying a meaningless death; in my dad’s own view, he was dying a loser, a miserable casualty of the battle he’d fought so long and hard to win. I needed to believe that his death, if that’s what was comin
g, could mean something important or even wondrous. If Jeromy had been peddling heaven or reincarnation, those might have been just as good. Because I needed to believe in something positive and Jeromy gave it to me by pointing out that death, if nothing else, meant peace after the pain of dying—or maybe he meant the pain of living—in my father’s case, either now applied. As a machine breathed for my father’s struggling lungs, I wanted that peace to come for him as soon as possible.
Suddenly I had a narrative so much better than the one that ended with devastation and loss. I could no longer fathom the importance of my father’s staying alive, not like this, like one already dead. Jeromy’s skin in the blue light of these machines looked like porcelain. I was so in love with him right then that if the ICU had been a set in a musical, the frozen bodies that filled it would have burst into song.
Then I looked again. There stood Jeromy—the antithesis of my father and everything he’d ever believed—a rebellious college dropout, with a bleak near-disdainful view of life. Jeromy looked up at me then and stared solemnly into my eyes. Spending a moment with a dying man and his daughter was spiritual for him. I tried to smile, but I was overwhelmed by a single thought:
Holy shit, Dad, I’m so glad you’re not awake for this. You would seriously—seriously—hate this guy . . .
Twelve
Even though I went to a liberal arts college in the nineties, I never put much stock in Buddhism or the practice of Zen. At twenty-two and in the middle of falling in love, I was hooked on wild euphoria only slightly less intense than deep despair set to a Sinéad O’Connor sound track. Thanks to my relationship with Jeromy, I was chasing the rabbit just to see how high I could get, and I didn’t need drugs to do it. The idea of tempering my emotions, seeking any kind of balance at all, just seemed incomprehensible.
On the other hand, one Zen idea I did embrace was this: fear is a complete waste of time. I was learning at a breathtaking rate that everything, even the worst things, is always worse in the anticipation than in the reality. Once the thing happened, it was never as bad as that blinding, paralytic fear that preceded it. I had learned that when the worst was happening, fear no longer really existed. I learned it because every day, it seemed like the worst was happening.
You might be thinking, That’s bullshit. When you are under attack, you’re afraid. But even this fear is about the existing attack intensifying, or the possibility that you might die. It isn’t about fearing the attack that is already under way. When things reach their absolute worst, something wondrous occurs: a bearable emotion like sorrow or resignation settles over you. I’m not talking about afterward, when the horrible thing is in the rearview. I mean right then, during the unfolding of the horrible thing, you might even get lucky and go numb. Occasionally, you might get a burst of power or fight; that’s when the anger takes over and fear is gone.
The worst, it turns out, is always the thing you feel before the worst happens.
* * *
There was so much fear surrounding those last months that my father spent in the hospital. My grandparents no longer came to visit. They now only came to Ohio if my mother was unable to care for my father for a period of time and needed them to tag in.
To my mind, my grandfather had always been a physically powerful man. He enjoyed spending time with his grandchildren. I remember his full but quiet smoker’s laugh, a light rattle from deep in his chest. I recall him removing his bridge to reveal large potholes in his teeth, to amuse us on a whim. He was as big as his giant La-Z-Boy, where he sat and read to us. He smelled like his pipe collection. He wore the same pair of black Converse sneakers around the house until his big toe came out of one of the holes. He brazenly displayed a framed poster of Victory cigarettes from the 1960s, with a drawing of a naked blonde posing across it, above the desk where he worked throughout his retirement. We all fought over that poster after he died.
As I walked past my father’s room in the hospital, I watched my grandfather shave his dying son. He gently smoothed on some shaving cream. Carefully, he raised his son’s chin and scraped the razor over several days’ worth of stubble. When my sister and I arrived at the door, we saw our father crying.
“I’m scared,” he said softly to his father. “I don’t want to die.”
Hilary and I stood at the doorway and watched as our grandfather’s hands shook ever so slightly while he continued to shave our father’s face, tears cutting pathways through the white foam.
* * *
One condition of my semester off was that I return to school the following fall, no matter what. My father had been particularly insistent on this point.
“People who take time off from school, statistically, don’t go back,” he’d repeatedly warned before he agreed to the hiatus nine months earlier. But by mid-September, his health was so precarious that I was fielding regular emergency phone calls from Ohio when I was back in Boston. By the third week of school, I flew back to Columbus after my father suffered a stroke. Once he stabilized, I flew back to school again.
The day after I returned from the stroke trip, I was putting on makeup for a Friday night out with friends at a pub we frequented in Davis Square. Sure enough I got another phone call. My sister told me I’d have to get another ticket and fly back home again the next day. Dr. Lynn decided it was time to put my father under palliative sedation: a compassionate coma for the dying.
I arrived at the Burren, our neighborhood pub, an hour late. My friends were already drinking pints. I slid into the booth at the back of the bar where they sat and lobbed off the following in one run-on sentence: “Sorry I’m late my dad just slipped into a coma what does a girl have to do to get a beer?”
My three friends stared at me in silence.
The next day, when I arrived in Columbus for the third time in almost as many days, the hospital had convened an ethics committee. This time my father’s kidneys had failed. He had survived, but there was a question about whether or not we should keep him on dialysis. If we took him off, poisons would back up into his body. He would feel itchy, but we were assured that dying in this way wouldn’t be painful.
I was on board. It was time to call it a day. My sister and mother lingered in the background. They were devastated. I felt manic in my desperation to end all of our suffering. The summer had been relentless and exhausting as my father’s nutritional levels plummeted. His lymph had become impossible to remove, trapped by hardening scar tissue, leaching hydration from his body. The process was finally taking out his organs one by one.
I was angry when the ethics committee voted to keep him on dialysis. Jackie and my sister hugged me as I ranted and begged. Finally, Dr. Lynn decided to wake my father from his medically induced coma. It was time to let him weigh in on his own fate.
My sister recalls Dr. Lynn calling out loudly, “Bill? Hey, Bill! Do you want to die?! Are you ready to die?!” He repeated it over and over until my father was shaken awake.
BILL, HEY, BILL, YOU WANT TO DIE? ARE YOU READY TO DIE?
I don’t know about the last time you were woken up from a medically induced coma, but if I was the one receiving this wake-up call, I’d probably ask to be shot directly in the head. Instead, my father blearily looked around the room, catching the exhausted and horrified faces of his family.
“What does Joselin think?” he asked, harkening back to the day when I had rushed in to stop the DNR after he had been put on steroids.
“You don’t know, Daddy,” I began this time. I was a new person. I no longer saw death as something horrible. Maybe life and death were too large to encompass with concepts like “bad” and “good.” My father, even now, was trying to fight. So I told him emphatically, “You’ve been out of it all summer. I mean, it’s September!” Did he even know that? Hilary was bawling. My mother couldn’t look. “I think it’s time, Dad,” I said. “You’ve been through so much . . .” And so had we.
I know he didn’t mean what he then said. Even though his voice was almost inaudible an
d his words were coming out in percussive breaths from the multiple tracheotomies that had scarred his throat, it echoed when he looked directly into my eyes and spat his last words to me: “Fuck. You.”
Like I said before: my dad was going down fighting and anyone who didn’t understand that was deadweight.
I didn’t go back to see him that night. The next day, my mother and sister asked me to go with them to the ICU. I had made my father a mixtape of his favorite songs: “Red Rubber Ball” by the Cyrkle, “Homeward Bound” by Simon & Garfunkel. We cued up the song “Dream” by the Everly Brothers. We stood around his bed and the three of us started singing, “I need you so/that I could die/I love you so . . .”
Then something wonderful happened. We heard him trying to join us. It was weak and guttural but unmistakable: “And that is why/whenever I want you all I have to do is dream.”
* * *
I returned to school again, but only days later a seizure left my dad with what we were told would be the mental capacity of a four-year-old. That is, if he woke up again at all. I flew home.
Two days after that, my grandparents, my mother, Hilary, Jackie and Jimmy, and I were eating Chinese food at the dining room table of my parents’ house when we received the call from the hospital. We had been there all day. Now the doctors said we should come back quickly. It wouldn’t be long. Jimmy drove with my grandfather in the front seat, and my grandmother, Hilary, and me in the back. Jackie and my mother stayed at the house.
When we got to the hospital, everyone went inside, and I stood in the parking lot smoking a cigarette by myself. An enormous harvest moon hung low in the sky. I was watching it just as a single leafless tree exploded with blackbirds, cawing loudly as they erupted into the dusky light of the fading day.
The Family Gene Page 8