This Really Isn't About You Read online

  My grandfather had been a tall and broad and sometimes overweight man, but now he was small. The cancer had moved fast and ravaged him, and we knew that it was almost the end. We gathered, and by we I mean my family and some of the family of my grandfather’s second and third wives: after my grandmother, he’d been widowed again, and had stayed close to his second wife’s children, as well as the family of his third wife. My grandfather was a man with a very big warm heart, and so there were a lot of other people coming to say goodbye to him, friends of all ages who held him dear. I didn’t know who some of those people were and as I watched them file in the door to hold his hand, I felt some resentment towards them and their grief. Some of those people brought potted plants, which struck me as a strange gift for a man who only had a few days to live, though I could see where they were coming from: plants were a thing that my grandfather had always loved.

  My grandfather’s dying went on for quite a long time: while the hospice nurse made him more comfortable, all there was for the rest of us to do was wait. We stood and sat around the apartment. We held my grandfather’s hand. We ate carrot cake and matzo-ball soup and potato pancakes. We helped him drink a little Scotch. Gingerly, we talked about funeral plans: about talking to a rabbi, about catering. My grandfather was going to be buried in the plot next to my grandmother, in a cemetery that my father had never returned to, not in the nearly fifty years since his mother had been put in the ground.

  We waited for it to be over, to get back to our regular lives, even though we didn’t want it to be over. We had return tickets, and as the day approached, and my grandfather still breathed, we rebooked them. One afternoon in that strange long week, while we were eating the carrot cake, someone noticed that the people with potted plants were somewhat monopolizing my grandfather’s limited remaining time on earth. That person said to my father: Do you want us to leave you alone with your dad for a while, so you can have a final conversation? and my father said: Um, not really? because there wasn’t a particular thing that he wanted to say, an apology or a declaration or something to confess.

  That my father loved my grandfather was not in question, but it was not usually expressed through statements of sentiment. It was in the way that they fought over who’d pick up the check every time they went to dinner. It was in the phone calls that they made to each other during the football games between the colleges that they’d graduated from many decades earlier. It was in the way that they exchanged bone-crushing handshakes every time they met, even in the last five years of my grandfather’s life after he had a stroke and spent his days in a wheelchair.

  When my grandfather died at last it was at three o’clock in the morning, give or take. He was at home with his wife and his nursing assistant. When we’d left that evening, the hospice nurse had said: It will probably happen tonight, and so I held my grandfather’s hand and kissed him goodbye, even though he was on far too much morphine to hear me. We went back to our motel on the side of the highway. In the night, the phone between my bed and my sister’s rang and woke me, and I sensed what the news was but answered it anyway: Your grandpa’s passed, said the nursing assistant, and I said, Thank you, and I asked him to call my parents’ room instead.

  The next morning I went to my parents’ room down the hall and standing in the doorway I could see my father sitting at the desk, doing something on his laptop. Reading emails, researching funerals. He and my mother had gone to the apartment in the night and watched while my grandfather’s body was taken away. My father was not crying, but I looked at him and he looked at me and at that moment I felt that I knew very clearly that even if your parents are very old and have had a rich and well-loved life, if you love them there is never a time in your life when you will feel that you don’t want them any more. It was not something that I had ever considered, but at that moment I looked at my father and he looked at me and I knew that there would never be a time in my life when I would regard my parents and think: Yes, I’m ready.

  4

  My father told me about Lynch syndrome about six months after his father’s death. I was back in London; he sent me an email and told me to call him on Skype, which was unlike him. My father emailed everyone in the family almost every day – at least a New Yorker cartoon, or a link to an article about terrible Republicans – but it was rare that he initiated a call. My mother was out of town, visiting friends. I wondered if he was just lonely.

  I have Lynch syndrome, my father explained, it’s a genetic condition that causes cancer.

  Earlier that year he’d had a lesion on his chest, so minor that he’d completed the radiation treatment before telling me and my siblings about it. By the way, he’d said, to share that news, I had cancer. I’m fine now.

  But the skin cancer, it turned out, was characteristic of Lynch syndrome. So was the cancer that my father’s sister, my aunt, had recently been treated for.

  My mother must have had it, my father explained, that’s why she died so young. It causes colon cancer.

  Back in the day, when my grandmother Hannah got sick at thirty-two, it was tragic, but no one knew why it had happened. Not exactly. My father didn’t talk about Hannah much. In my bedroom, growing up, I slept under a woollen quilt that she’d knitted and embroidered during one of her long periods of illness. My grandfather didn’t talk about her much, either, though sometimes he’d tell me that I looked like her, and she was beautiful (I didn’t think I did, but she was).

  Sometimes it seemed to me that my grandmother’s main family legacy was an excessive, embarrassing preoccupation with healthy bowel movements. Constipation and its cures were discussed with an openness and frequency that I assumed did not occur around the dinner tables of normal families. Dad liked to recount, sometimes in group situations, how he’d conquered this problem when he first moved to Scotland with steel-cut oats. I thought I really had a problem, he’d say, but then I discovered those oats! It was embarrassing, especially when I was a teenager, especially when every family vacation required a detour to an unfamiliar local grocery store so that Dad could source some supplementary fibre.

  Hannah was the one who died young, but she was not alone. Her sister, my great-aunt Ruth, had endured a lot of cancer, too, though she lived until her early eighties. At Ruth’s funeral, one of my father’s cousins remarked that she recalled when Ruth had first called her to say that she had cancer. That phone call had happened thirty years before Ruth died, of bladder cancer. Cancer runs in my mother’s family, my father would say, but there was no name for what was running, not until my father and my aunt learned about Lynch syndrome.

  Lynch syndrome, Dad said on that Skype call. There’s a fifty per cent chance that you have it, too. You should get tested for it.

  OK, Dad, I said, and because I was on camera, I nodded. But I didn’t make any plans. It was not a nice thing to think about. I was twenty-nine years old and I was trying to figure out things like: Do I have the right boyfriend? and Do I have the right career? and Will I ever feel strong enough to look at my bank balance when I withdraw money from the cash machine? I did not want to think about the ways in which I might one day die.

  Lynch syndrome is a gene mutation. It’s a flaw in a cancer-repair gene. It means that instead of repairing themselves from the many uncontrollable things that cause damage, cells become cancerous. It’s not rare: more than 1 in 400 people carry it, but they rarely get an early warning, because it’s usually diagnosed once people already have cancer, not before. It’s found in all kinds of people, but in particular it’s found in people who can trace their origins to certain ‘founder populations’. Folks who built families with people like them. People from Finland. People from Iceland. French-Canadians. The Amish. Ashkenazi Jews.

  Get tested, my father said, and my brother got tested and my sister got tested and my cousin Jennifer, my aunt’s only child, got tested. None of them had it.

  Get tested, my brother said, the next time I saw him.

  Get tested, my sister said,
it’s easy.

  Get tested, my cousin said, I’ll come to the doctor with you, if you want me to.

  I will, I said.

  But I didn’t. I didn’t get tested because I was sure that I had it.

  Sure because of my other inheritances from Dad: childhood asthma, chronic anaemia. We had that similar laugh, and every morning from the time I turned thirty I would look in the mirror first thing and see his features growing into my sleepy face, and I’d rub anti-ageing cream into his lines on my forehead.

  How is your father doing? a friend of mine asked, soon after my dad was diagnosed. I was telling the friend about Lynch syndrome, and the test I did not want to have.

  He’s OK, I said. He’s perfectly healthy, although I’m sure it is never nice to learn ahead of time how you are likely to die.

  I still did not get tested.

  And then, about a year and a half later, Dad told me that he had lung cancer.

  When he told me that he had lung cancer that night on Skype in 2012, I was sitting in bed, looking at him and my mother on my laptop. They were next to each other so that both of their faces were framed in the camera. It was late on a Sunday evening for me in London, where I had then been living for nine years, and it was early on a Sunday evening for my parents, because they were at home in Baltimore. They’d moved there from Schenectady in 2007.

  I wish I could tell you exactly what my father said because that seems like something that I should remember – maybe I should have written it down, maybe I should have appreciated its significance – but I can’t tell you the words he used, not precisely. I just know that two of the words were ‘lung cancer’ and that my father looked frightened, a kind of fear that I’d never seen before. My mother, too. After my father said ‘lung cancer’ we ended the call quite quickly, unsure of what else to say. I called my friend Lauren, and cried.

  Lung cancer is not a common kind of cancer found in people who have Lynch syndrome, but Lynch syndrome makes every kind of cancer more common. My father never smoked a cigarette, never in his life: it was a fact he insisted on and thought it seemed incredible to me that it had never happened, never ever, not even a puff at a party, my father was a very honest guy. He said that it was because his mother was such a heavy smoker: a two-pack-a-day smoker. He said he remembered spending time with her in their family kitchen, chatting, under a cloud. Maybe that was why my father was never a smoker.

  This was something that often felt necessary to say when I told people my father had lung cancer: My father never smoked a cigarette in his life! and every time I said it I felt like I wished I hadn’t said it. To say my father had never smoked a cigarette in his life was to imply that he was somehow a better person than other people who had smoked and then died of lung cancer, and of course he was, because he was my father, and of course he was not, because plenty of people get cancer even though they are kind and good. It was not a nice thing to say, and yet: every time I told someone what had happened to my father, I said it.

  In the last year of my father’s life I started to go home more often. I didn’t say that it was because my father was dying, and my parents didn’t say it either, but we were always happy to see each other. By then, I was living in Berlin. I’d moved there at the end of 2012 to work as the copywriter at a tech startup that had a lot of money to throw around on travel. My boss agreed to send me on a business trip to New York City once a month under the auspices of work so that I could take the train to Baltimore to see my parents. At first, on these Baltimore visits, we just did our usual things together: went to lunch, went to museums, went to the communist bookstore, watched The Sopranos. But as time passed, it got harder. We spent more time at home. On one of my Baltimore trips, we visited the hospital, which is where Dad worked, but also where he was being treated. We sat in a waiting room to see the oncologist. It was large, capacious, plenty of space for dozens of people at various stages in the progression of death. I regarded the people who looked more sick than Dad, and I felt better, and then I felt worse, to have taken comfort in the imminent demise of strangers.

  Chronic lung cancer, is what my parents called it when people asked, which sounded better than Stage IV, but was in fact the same thing.

  The last time Dad and I ran an errand together, it was November. We went to Staples so that he could get a copy of his Ph.D. thesis in nuclear physics spiral-bound. I didn’t ask why, what for. I knew he was dying. We were mostly silent in the car. I said some words about the weather. In the parking lot, Dad unbuckled his seatbelt. The undertone of his complexion had moved from olive to grey. He moved like a cancer patient: slow, pained. He didn’t open the door. It felt like when I was a teenager, when we used to sit outside my high school, except now he was the one who did not feel ready to get out of the car.

  You know, Dad said, looking ahead through the windshield at the parking lot, which was also grey, you should get the test, for Lynch syndrome.

  I will, Dad, I said, I’m working on it.

  ‘I’m working on it’ was Dad’s signature phrase. He applied it to any situation: choosing the best new household mop. Enfranchising voters. Perfecting a loaf of homemade rye bread. Nuclear physics. ‘I’m working on it’ meant Dad was thinking about something, considering it. Dad never failed, he just worked on things some more. Everything could always be worked on. In his iPhone 4 he kept lists related to things that he was working on: laboratory experiments. Grant proposals. Movies that he wanted to watch with my mother. One of his lists was entitled ‘Bill’s cancer’.

  Working on it meant that I was thinking about it, too. I was thinking about it a lot. What I didn’t explain was that ‘I’m working on it’ meant that I had decided not to get tested while Dad was alive. I couldn’t imagine telling him that I had the thing that was killing him. I thought about telling him that I’d taken the test and it was negative, to put him at ease. But then I thought about having to tell my mother, after Dad died, that I had lied.

  I did not get tested.

  5

  Even if you’re not doing it because your father is dying, the age of thirty-two is not a good time to move to New York City for the first time, and neither is the 29th of December. And yet I did just that. I arrived in the city in torrential, freezing rain, with an enormous, dark-green rolling duffel bag that I’d borrowed six years earlier from an ex-boyfriend. I’d promised to return it to him and I hadn’t seen him since. It was still marked with gold foiled curling ribbon tied on at some point by his mother so that he wouldn’t lose it on his way to graduate school. I left the ribbon on. Every time I saw it coming around a luggage belt at an airport I saw it and remembered what a thoughtful person she was (I really liked that boyfriend’s mother, was pretty sad that I lost her in the breakup). When I arrived in New York I had a brand-new deeply discounted Ralph Lauren duvet that I’d acquired from a TJ Maxx in Baltimore, looped in its plastic carrier bag over the handle of my duffle.

  Don’t let anyone steal that, my mother said, when she saw my burdensome luggage, ready to go in the foyer of my parents’ home. I appreciated her belief in me, the value of my modest goods.

  My parents took me to the train station with these bulky items: my mother drove the Subaru, my father came along for the ride. This was the reverse of the usual order of things. I’d noticed it for the first time when they came to pick me up at the Baltimore airport a week or so earlier, my mother with the car keys in her hand. It was Christmas, and my sister and her husband and I had all connected in London on the same transatlantic flight. But where they breezed through, I was slow to emerge from customs. I had imagined it being like the scene in Closer, when a customs officer says, ‘Welcome home,’ to Natalie Portman on her return to New York from London, and she smiles her beautiful enigmatic smile. I imagined saying: I’m back in America after fourteen years away!

  I didn’t want a song and dance, but a little acknowledgement would have been nice.

  Instead, I was pulled out of line by a sweet-faced beagle who caugh
t the scent of the banana that I’d eaten on the plane six hours earlier. The contents of all of my bags were pulled apart and scanned in a giant X-ray machine, exposing that I was not carrying drugs or more bananas, and that I had crumpled the contents of my Berlin life into my bags without organization or folding.

  By the time I was allowed to exit into the arrivals hall, my mother was still standing, waiting, with the car keys in her hand, but my father had taken a seat on a bench. No one said anything about this. My parents just hugged me. Before he got sick, my dad had taken pleasure in racing me to the parking lot on airport pickups: his long legs at top speed across the floor while I walked along the moving sidewalk. Now, we all moved at his slow pace. I didn’t say anything about it.

  Neither did I say anything on the day I persuaded Dad to go for a walk, just a little way down the block. His doctor had told him that despite the pain he was in pretty much all of the time, it was imperative for him to stay on his feet, to keep moving. It was cold, so we put on layers, and then we trudged downhill one step at a time, talking about nothing much at all. We passed the home of a neighbour who had two sons almost precisely the age of my nephews who lived in California. The little neighbour boys were outside playing in their yard, on their swingset, and Dad and I looked at them, and then I looked at Dad, and he didn’t say anything, but there were tears streaking his cheeks. I think he knew that he wouldn’t see his grandsons again. I looked away, because I did not want to cry as well, and soon after that Dad said he was tired and we turned to go home.

  When I arrived in New York I was due to spend my first couple of months in Fort Greene, a pleasant, leafy and gentrified Brooklyn neighbourhood just a single subway stop from Manhattan. But the train deposited me in Penn Station a couple of hours before I was due to meet the estate agent at the apartment, and so I took my suitcase and duvet up the escalators and out of the station – the worst place in New York, and one of the worst places in the world, and a place that hadn’t changed at all since I’d first visited it more than twenty years earlier – and headed across Eighth Avenue, through deep, sloshing puddles. I went to a diner, an establishment done up decades earlier in shades of urine. A restaurant with no ambition to be anything but a location for people who want to be somewhere else but can’t be. A space to hold bodies that needed to dull liminal pain with carbohydrates and grease.