This Really Isn't About You

by Jean Hannah Edelstein

  The clinic where the geneticist worked was named after a person who was a little bit famous before he got sick, but mostly famous because he died of colon cancer. The endowment of the clinic was a generous act on the part of his family, but while I sat in the waiting room, in another chair covered with plastic, I also thought that it was not very uplifting to name a clinic designated to help people with a particular disease after a man who perished from it. I know this is quite traditional when it comes to naming clinics and waiting rooms, to commemorate people who were vanquished by the thing that you’re trying to fight, but that’s just my opinion. I’m not at an expert at naming clinics.

  I was surprised that the geneticist emerged from the corridor and fetched me himself, rather than sending an assistant, as if he considered me to be important. I was happy to see that he looked to be at least twenty years older than me. Old enough to be my father, I thought, not that I was looking for a replacement. It was a comforting contrast to my youthful gastroenterologist: I am as guilty as anyone of ageism, of wanting the people who deliver bad news to seem more seasoned than me.

  The geneticist’s hair was black and puffy and luxurious, in a style that I associate more with high-rolling men on Wall Street than with geneticists. But then, I had never before had a reason or occasion to meet a geneticist. I had only googled him. The internet said that this doctor was a leading expert in Lynch syndrome. That seemed good. He shook my hand and introduced me to a genetic counsellor, a woman who looked around my age. Maybe she was even a couple of years younger than me. Her hair was splendid, long and pale and shiny. It was the kind of hair made for an insouciant flip, if that’s a thing you want to do. The kind of hair I’ve always dreamed of, but don’t have, because my brown curls are another thing that I inherited from my father, from his side of the family.

  This was not the kind of appointment where you take your clothes off and are probed. Instead, this was the kind of appointment where you sit at a table and listen to experts tell you facts about your body, which to the experts is problematic, and which to you is the thing that holds you in the world. The geneticist and the genetic counsellor ushered me past the clinic reception desk, down a hall and into a small room with no windows and a surfeit of wooden chairs. The chairs were clustered in a haphazard fashion around a round wooden conference table. Somehow I ended up in the chair in the furthest corner, the chair that was the hardest to escape from. The geneticist and the genetic counsellor sat across from me, on the other side of the table. They smiled. They opened a folder that contained everything that they felt they needed to know about me. The folder was slim.

  I felt outnumbered: by the chairs, by the professionals.

  So, the geneticist said, glancing at the piece of paper at the top of the slim pile, you tested positive for Lynch syndrome? How did you know to get tested?

  Lynch syndrome is not even that uncommon, it turns out. About one in four hundred people have Lynch syndrome. But it isn’t common for people with Lynch syndrome to get tested for it before they exhibit any symptoms: most people with Lynch syndrome only find out they have it when they have colon cancer, when their cancer is biopsied.

  My father had Lynch syndrome, I told the geneticist. First he had skin cancer that was related to Lynch syndrome, and then he got lung cancer, and I believe that his oncologist said that the biopsy from the lung cancer indicated that it was caused by the same gene. Even though lung cancer is a rare occurrence with Lynch syndrome.

  OK, the geneticist said. But your father hasn’t had colon cancer?

  No, I said, he hasn’t. He didn’t have colon cancer. He’s dead. He died in February.

  I’m sorry, the geneticist said. My father died in February, too.

  This really isn’t about you, I thought.

  But what I said is: I’m sorry.

  The geneticist looked at me, and I looked at him, and for some reason I laughed, as if to say: Dads! What are they like? Dying in February!

  When in fact what I was thinking was: Your dad was probably an appropriate age for a dad to die.

  The geneticist moved on to explaining what kinds of cancer I’m at high risk of developing. It’s a lot of kinds of cancer. An exhaustive list. Colon, oesophagus, stomach, pancreas. And because I am a woman: endometrial cancer. Ovarian cancer.

  For women with Lynch syndrome, the geneticist said, the recommendation is a prophylactic hysterectomy.

  I already knew this. This is the phrase that I had googled the most: prophylactic hysterectomy. I’d searched and re-searched it so often that for the first time in my life, I knew how to spell ‘prophylactic’ by heart. I looked at the geneticist.

  I haven’t had children yet, I said. I mean, I want to have children, but I don’t have a partner.

  The geneticist and the genetic counsellor looked at me. I looked at the door to the room, which was between me, and them, and all the chairs.

  To get out of this room, I thought, I would have to climb over all of these chairs.

  No one said anything for a long while.

  This, I thought, is the saddest silence of my entire life.

  I’m not going to do that right now, I said.

  I couldn’t even say the word. I couldn’t say: I am not going to have a hysterectomy.

  OK, said the geneticist.

  I nodded.

  You know, said the geneticist, as if he was trying to lighten the mood, if you want to have kids, this is New York City, so you can have IVF! That’s what women do here!

  The kind of women he was talking about were not women like me: they were women like the ones I saw on the way to the clinic, the women with diamonds and husbands. Women who had clear plans for their lives. I was a little surprised that the geneticist hadn’t noticed that I was not one of those women, but then again, the file of information that he had on me was only slim. It didn’t tell him what my tax bracket was, or the extent of my loneliness.

  You can test the embryos for Lynch and ensure that you only use the ones that don’t have it, in order to eliminate the chance that you’ll pass the disease on to your children! the geneticist said, with even more cheer.

  Good thing for me that this was not an option for my parents, I thought.

  I see, I said.

  My mouth felt very dry.

  Well, said the genetic counsellor, and to me she sounded disappointed, if we’re not going to take your ovaries, then there are some gynaecological exams you can have, to screen for these cancers.

  OK, I said.

  The genetic counsellor frowned.

  But they’re not very effective, she said.

  Her tone made me think that no one had ever tried to take her ovaries.

  OK, I said, yes. I’ll do those. I’ll do the tests.

  You’ll also have a colonoscopy and an endoscopy, said the doctor. Mammograms, breast ultrasounds. And every year, an abdominal MRI. Your insurance might not cover that one, which is a shame, because it’s very expensive!

  I should get a family discount, I thought.

  What else? the geneticist said. He paused. He furrowed his brow.

  Brain cancer! the genetic counsellor said, in a tone that I found smug. You could test her for brain cancer!

  Oh, OK, said the doctor. Shall I test you for brain cancer?

  Sure, I said. Why not!

  We climbed out of the tangle of chairs and walked across the hall into an examination room. I hopped up on the paper-covered table. The geneticist shone a light in my eyes, asked me to count backwards in sevens. He pounded my knees with a hammer. He told me to get off the table and walk across the room in a straight line.

  Like you’re a runway model! he said.

  I stared at the wall, fuming. I was full of regret that I was wearing a somewhat figure-hugging dress.

  I’m a fucking adult, I thought, but did not say.

  You don’t have brain cancer! said the doctor, after I walked.

  I turned around.

  Cool, I said. What are my chan
ces of getting brain cancer?

  Two to three per cent, the doctor said.

  That didn’t sound so bad.

  Maybe, I thought, maybe this is some good news, at last.

  I smiled.

  What are the chances of brain cancer in the normal population? I said.

  Much better, said the doctor. Like one in ten thousand.

  Oh, I said.

  My appointment was over. I agreed to return to see the geneticist the following year. The genetic counsellor handed me a list of the appointments that I needed to fulfil next. A checklist. I agreed to schedule an MRI, a colonoscopy, a mammogram. I agreed to see a dermatologist. I agreed to make an appointment with a special gynaecologist, a cancer specialist who would insert a thin steel rod through my cervix to scrape fresh cells off the walls of my uterus, to see if there was anything gestating there that would eat me alive.

  I stepped outside, and gulped the air. I needed to go back to work, I had already missed several hours in the office. But I wasn’t ready to be at my desk. Instead of getting on the subway downtown to Union Square, I decided to walk for a while. I headed south, along York Avenue. Medicine is the key industry in that far-eastern part of the Upper East Side. The blocks are full of hospitals and the businesses that support hospitals. There are healthcare supply shops where you can buy bandages, crutches, commodes. There are uniform stores where you can buy scrubs, white coats, rubber clogs. There are twenty-four-hour diners where you can eat bland, invalid-friendly food – clear chicken-based soups, tuna melts on white bread, milk puddings – while you gaze out a window and think about mortality.

  I walked a couple of blocks further south and arrived at the Sloan Kettering Institute, one of the world’s leading cancer hospitals, a series of huge grey cubes on either side of the street. They loomed.

  I wonder if I will die in one of those buildings, I thought.

  And then I decided I should stop thinking about that, so I turned away. I walked west, on 57th Street. I passed an old-fashioned wig shop offering a wide range of styles to suit all kinds of people who’ve lost their hair to chemotherapy. There was a luxurious updo in the centre of the front window, a swirl of grey strands caught up in a thick bun. It was displayed on a mannequin head that had the perfect sharp features of a Latvian mail-order bride. The head was on a turntable. The turntable moved clockwise, at a decorous speed.

  I stood for a while at the window and watched the wig spin.

  4

  I began to enjoy living in New York. I found some space in myself to allow it.

  I spent time with my old friends and made some new ones – people from work, friends-of-friends from London and Berlin. My job was busy and interesting and it gave me opportunities to travel: back to Germany, out to San Francisco. I settled in to my apartment: bought more furniture, hung more pictures in frames. I signed up for a seminar that was full of other people who were also a little adrift and hopeful that writing would give them more purchase or direction. I bought a second-hand bicycle from a woman who was returning to Sweden from Brooklyn, and I rode it in creaking circles around Prospect Park.

  On the subway platform one warm evening I made eye contact over the edge of my copy of the New Yorker with a man who was reading a book of poetry and had a hard hat dangling from his backpack. He smiled at me. I smiled back. He looked like the man of my dreams. We exchanged glances until his train came and then, in an unprecedented act of boldness, I got on, too, even though it wasn’t my train, and said hello, and gave him my business card.

  This is me in New York, I thought in triumph, as I waved goodbye and got off at the next stop to switch to my correct train, this is the kind of woman I am in New York!

  I never saw the man from the subway again: he texted me poetry for two weeks but cancelled two dates with excuses so preposterous that he had to be married. Still, I loved that it happened. It was a moment of organic romance. A good story. The kind of thing that is supposed to happen to a woman on her own in New York.

  Friends came to town, from London, from California, from Boston. I showed them the small parts of the city that had become mine so far. I had a supermarket routine, a favourite spot for dinner and a favourite bookshop. I knew where to get on the Q train in the morning to be closest to the right exit in Union Square.

  Brie came to town, on a work trip, we ate dinner at a gluten-free restaurant and then went to see a psychic. She suggested it. It was six weeks or so since my diagnosis, and it was a real comfort to see her: one of my oldest friends, someone I’d known since university, and through years of ups and downs in London. It felt safe to be honest with Brie about just how bad I felt. She’d seen me crack open before, after all, like the time a couple of years earlier when she sat with me on her sofa while I sobbed at an album of photos of her cousin’s new golden retriever puppy.

  We were on Third Avenue, somewhere in the east thirties, when we saw the sign for the psychic, outside a walkup apartment building, a grey and unprepossessing one.

  Let’s see this psychic! Brie said. It’s only ten dollars!

  I’m sure it’s not really only ten dollars, I said.

  Brie was already ringing the doorbell.

  OK, I said.

  Someone buzzed us into the building. We went up to the first floor, where the psychic was supposed to be, and waited. No one came to any doors.

  You’d think they would know we were here, I said.

  Finally, a man opened the door and looked at us. He turned around and said something in a language that I think was Romany, and then he was replaced by a young woman. She was maybe seventeen. She peered out at us from a dark room.

  Just a moment, she said, I’m going to get the reader.

  A minute later, she came back out, wearing a lavender bathrobe. She was the reader.

  Come through here, she said, the usual reading room is not available.

  She led us to the apartment next door, a studio, with a large grey sofa and a grey carpet and grey walls, and a coffee table with a shelf underneath that was exploding with unopened utility bills. There was a television on in the next room. I could hear a football game, and voices of men discussing the football game.

  Brie volunteered to go first. The psychic analysed different parts of Brie’s life.

  Your career is not what you want it to be, the psychic said.

  Actually, Brie said, I’m very happy with my career. In fact, I am doing the thing I wanted to do way back when I was in college!

  I nodded. It was true.

  Your love life, said the psychic, you’re not sure about where it’s going.

  Yes, Brie said.

  You are alone, said the psychic. You eat alone, you sleep alone, you wake up alone. I want to help you.

  OK, Brie said.

  I can light some special candles for you, said the psychic. They are spiritual candles. You can’t buy them in a store. They are three feet tall. There are three. Red, for love, and green and gold, for money and business.

  Oh, Brie said, well. The thing is, I am only in New York for forty-eight hours.

  I want to pray for you, the psychic said, and light the candles. You just pay for the cost of the candles and you can donate any money you like for my time.

  No, Brie said, I really just want the ten-dollar reading.

  Money will come and go, said the psychic, and I can see that you will always have enough money. But this is your life. I want to help you with your life.

  No thanks, Brie said.

  One hundred and seventy-eight dollars, the psychic said. That’s the cost of the candles.

  I really don’t want the candles, said Brie, but thank you.

  She turned to me.

  Jean! Brie said, in a bright voice. It’s your turn!

  She smiled at me. The psychic smiled at me.

  Our friends, I said to Brie, we have to meet our friends!

  I took a twenty-dollar bill out of my wallet and put it on the coffee table.

  Thank you! I said
to the psychic. I’m so sorry that we have to leave now to meet our friends!

  Brie and I flew down the stairs and out on to the street, laughing with relief.

  I did not believe in the psychic. I also did not want to learn anything more about my future. I felt like I already knew more than enough.

  Seb was another friend from London. He moved back to New York for good about a year after me. We’d been friends since we were in our mid-twenties, ever since we were aspiring journalists in London trying to figure out what we were doing with our lives. We’d started on similar paths, working on the hipster magazine in Dalston. But then I stayed in London and Seb moved to northern Iraq, to live in Kurdistan and take photographs of war and peace and human joy and suffering.

  He returned for reasons similar to mine: he grew up in the city, on the Upper West Side, and he came back because his mother, Joanna, was diagnosed with cancer. At first it was just a temporary measure, a visit to support her while she recovered from surgery. We met a day or two after she’d been discharged, at her apartment. Seb’s childhood home. We all ate dinner together, but then Joanna went to bed early. The surgery was gruelling. A few days later, she’d learned that she needed chemo, radiation, too. A few weeks after that, Seb decided he didn’t want to live in Iraq any more.

  In her convalescence, Joanna was sleeping in Seb’s old room – the bed was lower, easier to get in and out of – so Seb and I reclined on her tall king-sized bed and whispered like teenagers at a sleepover, except that we were in our early thirties, and drinking glasses of good white wine from a bottle that we found in Joanna’s fridge. There was a cold wind blowing outside, over the Hudson River, and Joanna’s bed was stacked with many pleasant and luxurious pillows, the room hung with beautiful, tasteful art. It would have been a cosy scene if we weren’t talking about heartbreak and death.

  Seb was in the process of breaking up with the girlfriend he’d been in a relationship with for some time and we talked about that. It was always a long-distance relationship, always a little tricky to manage, but they had been devoted to each other, made it work. Until Seb went back to New York. When Seb went back to New York, it seemed like the girlfriend pulled away from him emotionally, even though he needed her more than usual, because of his mother’s cancer. As we talked and drank more wine it struck me that Seb seemed stressed, by his mother’s illness, but also distressed by his girlfriend’s absence. I saw his distress and it occurred to me that perhaps having a partner to love and support you during times of personal crisis might not be as helpful as I had imagined, or hoped.