/ 29 April 2011

It takes courage to deal with hereditary illness

My mother took me out for lunch on my 15th birthday. In fact, she took me to play miniature golf. We weren’t a wealthy family by any stretch of the imagination, but it was hardly a teenage boy’s dream. Being 15 — meaning kind of a monster — I did nothing to hide my displeasure. Undeterred, she rented us putters and handed me a short pencil and a score sheet.

“This will be fun,” she said. And it was, in its silly way. Miniature golf, like billiards, is a game of angles. And, like billiards, most of the fun is in pretending you know what the hell you’re doing. The worse you do, the more you have to laugh. And soon enough you’re actually having a decent outing with your mother.

Somewhere before the last hole, my mother stopped, mid-swing. The park wasn’t crowded, so it wasn’t as if we had to rush. She set the putter back down, looked at me directly and said, “I don’t think you should have any children.”

At the time, this made me laugh more than my worst putt had done. No children? Had she taken a look at me lately? Her affection made her overlook my hideous (and thick) glasses, a chunky stomach and an awkwardness with strangers that could only be described as “punishing” (to both them and me). At school, I’d been working overtime just to get a girl to kiss me. Sex remained the ultimate goal, of course, but you wouldn’t warn a child against mountain climbing when he’s doing his best just to get up a tree.

But I realised my mother didn’t see it this way. Her son had turned 15, old enough — in her mind — that sex became a genuine possibility. And now she meant to warn me off teen fatherhood. I felt flattered by her faith in me, so I smiled when I said: “You won’t have to worry about that for a long, long time.” She lifted the little putter and lightly tapped the head on the artificial grass, as if she was working at a particularly fragile nail. “I don’t mean just now,” she told me. “I don’t think you should ever have children.” Then she took her shot and walked on to the next hole, leaving me there. My mother didn’t have a grudge against me. She held a grudge against my blood — and hers. Our DNA.

Our family suffers from a hereditary condition called, generally, mental illness. Specifically, multiple family members in successive generations have suffered from either bipolar disorder or schizophrenia.

The difference between these two illnesses can be hard to parse for people who haven’t experienced either. Bipolar disorder, which used to be called manic depression, means that the moods swing from wildly high (not happy, necessarily, but manic) to profoundly low — and the sufferer has as much control over the changes as we do over the tides.

The schizophrenic, meanwhile, lives in a world that’s a bit of our reality and a bit of their own. Hallucinations can occur, both visual and auditory. The sufferer works hard to differentiate between reality and delusion, but this gets to be exhausting. Think of driving a car when you’re very tired and it becomes difficult to stay in one lane. The lines blur and with a blink — without even realising what’s happened — you’ve run right off the road.

By the time my mother took me on that miniature golfing trip, she’d watched one of her siblings suffer with schizophrenia his entire, short, adult life. I never met the man, because he killed himself before I was born. She had also wrestled with her own highs and lows for many years, so her fears — about the inheritance of illness, about the hardships of such a life — weren’t academic. They were personal.

Now I’d turned 15, the age when those two illnesses often first manifest themselves, and my mother must have been scared.

Maybe she’d been running through every fight we’d had in my awkward adolescence so far, sifting for evidence of the legacy she was afraid she had passed on. And I had a younger brother, so even if I turned out to avoid either illness my mother would have to hold her breath again in a few years’ time.

She explained all this to me as we drove back from the golf course. I’d held on to our score sheets, a series of numbers without real meaning, and found myself staring at the marks as she spoke. It was better than looking her in the eye. I felt her fear becoming my own, though I wasn’t conscious it was happening. I breathed in the anxiety and, just that fast, now it was mine.

Fifteen years later I’d bought a more stylish pair of glasses, learned to exercise and control my appetite, and my awkwardness had been tamed. At 30, I’d found both a woman and a passion — writing. My girlfriend and I moved into a small apartment. We weren’t wealthy, we weren’t even solvent sometimes, but that was all right.

Around this time I was working on my first novel, the story of a young man — obese and awkward — who gets kicked out of college for bad marks and bizarre behaviour. He returns home to his family who are determined to help him get better, but the reader soon realises that the narrator’s family is worse off than him. Each one is madder than the last.

These characters weren’t exactly my family but amplified versions. And yet the longer I lived with the story, the harder it became to separate from real life. Almost without realising it, I became that 15-year-old in the car with his mother again. Afraid of the worst. Expecting it.

What made this fear all the more real was the fact that my brother had been diagnosed with bipolar disorder. It manifested itself around the age of 13. My mother’s great fear had come true. By the time I’d turned 30, my family had been living with that illness — because everyone around the ill person is afflicted too — for seven years.

By the third year of my relationship, I had become terrified of that next step: marriage. We never actually talked about this, but her parents had been married for more than 30 years and seemed pretty happy, so why wouldn’t she want to follow that route? And once you consider marriage, then children probably won’t be far behind. Now, had she actually brought this up? Not exactly. She seemed pretty content with our life, actually.

But my anxieties were conspiring against us. I wasn’t sharing any of this with my girlfriend. I held lengthy debates about how to get out of our relationship, but she wasn’t invited to participate. When I pulled away she was shocked, but I’d already made up my mind.

I remember our last argument, the two of us shouting in the hall. In my arm I had the manuscript of my novel: in a sense, my entire past. I was off to meet my editor to discuss the last changes. My girlfriend stopped me at the front door. The hallway didn’t have any windows, so even though it was the middle of the afternoon she and I were standing in the dark. I felt trapped. I’d told her I wanted to split up. She thought I was making a rash decision, whereas I thought of myself as a man who’d considered all the options and found the only sensible solution. “Let’s just get married,” she said. “This is ridiculous.”

Maybe I was being unfair, but in that moment it seemed as if she’d finally revealed her “true” intentions all along. I’d been right! Marriage. And soon a child. I felt even surer of my decision. It was better to be alone than stay together and risk having children.

“You think you know what’s going to happen in the future but you’re not even looking ahead. You’re only looking backwards,” she said. Her wisdom is so obvious that the only shock to me now is that I didn’t hear it then. I opened the door. I ­disappeared. The only thing I left with was my book.

And for about five years that was plenty. I published two books and started on a third. I travelled and spent time with some wonderful women. I enjoyed myself but eventually I wanted something else. A home, I guess.

In a sense it had taken me five years really to hear what my ex-girlfriend had said to me as we stood at the door. In that time, I’d left behind the novel about my family and the obsessive mining of our history. And I’d watched my brother face the various trials we all do in life: dating, finding work, staying healthy. Sometimes he failed, but only sometimes. At other times he succeeded, moving out of my mother’s house and getting his own apartment; living with a roommate and getting along with them.

And my mother had discovered sources of happiness, too: gardening, becoming a reader, even becoming politically active. So maybe joy wasn’t impossible to find. I guess I became optimistic, or at least hopeful. I hadn’t stopped fearing the chance of passing on an illness, but that fear had become balanced by the observation that being ill wasn’t the same as being beaten.

When I first met my wife, Emily, it was obvious that up until then I hadn’t been with the right woman. I started wanting that home for real. Still, neither of us had the courage to admit enthusiasm about dating the other. She’s a writer, too, and had come out of a serious relationship. Independence suited her well. She and I went on 15 dates before we handled this impasse the traditional way: we went to a bar called the Fat Black Pussycat and drank until love finally sprang. Pounced, really.

I’d come to understand how keeping all my thoughts, fears and concerns inside had been part of the problem with my last serious girlfriend. I felt less pressure this time and more trust. So I decided to share it all over dinner, early on in our relationship. At least then Emily could make her decisions about whether to stay with me or leave, based on the complete truth. I gave her the whole history, all the way back to that miniature golf game with my mother. I must have talked for half an hour. When I was done, I felt tired and she stared at me, a little stunned.

Finally she said: “Why are you talking about marriage and children with me? We’ve only been together for a month.” In other words: slow down.

In the years after that we talked quite a lot about our future, my fears and newer-found optimism. Three years later she agreed to marry me and, in August 2010, we had a bit of a honeymoon in Amsterdam. Our place overlooked the Spui, one of the most popular squares in Amsterdam. On Fridays booksellers set up shop there; on Saturdays it’s the art dealers. Political rallies and even bands regularly gather there. So it wasn’t so odd when, one morning, an entire marching band gathered below our window. They played a lovely and loud set of songs. Emily particularly enjoyed them. The music seemed to promise a lovely day.

We happened across a rarity that day in Amsterdam, a church that was actually still a religious institution. We were more used to finding some old cathedral that had been turned into a community centre or even a squat. We went inside to find lots of other tourists there, too, looking equally surprised to find a church service going on, the pews full.

The church had grand ceilings and stone walls and was lit only by candles — hundreds of them — that set a tone of reverence. Emily saw a statue of Joseph and wanted to light a candle, so we fished around for a coin and she perched at the altar. While she kneeled, I stood beside her, reading the notices on the nearby bulletin board. Then Emily handed me a slip of paper. On it she’d written: “You are going to be a father.”

I nodded. I thought it was a nice prayer to make at Joseph’s altar. I turned away while she finished up. But when we got outside she seemed thoroughly depressed. She wouldn’t even look at me. I tried to cheer her up with the offer of real Dutch pancakes for brunch but it didn’t help.

“What’s the problem?” I finally asked. Her eyes fell and her mouth tightened to a line. “I told you I’m pregnant and you don’t even care.”

Instantly I pictured my reaction in the church as she must have seen it. I’d read the paper, grinned, stuffed it in my pocket and gone back to reading the bulletin board. That’s it. She must have been horrified. This is the guy I married? This is about to be the father of my child? A man who’s more excited about breakfast than our baby? But I’d thought the slip of paper was a wish, not a birth announcement! I wanted to explain, but thought that would only make it worse.

And, to my own surprise, I had a more visceral reaction to her news. I couldn’t stop smiling. I hadn’t thought about what she told me, only felt it, like a current. When I grabbed her and kissed her, I thought she’d feel a jolt.

We’re having a boy. The gender didn’t matter to me. The thing I worry about can’t yet be discovered in any test available to medical science. But for some reason now I don’t feel myself transported to that afternoon with my mother, as I did when I was 30; when even the inkling of a child made me sweat. I feel as if I encountered a monster when I turned 15, then spent 24 years fleeing from it. I just got exhausted and finally stopped running.

But it’s one thing to stop and another to turn around to confront the beast. I realise I might pass down an incurable illness to my son, but living based on what might go wrong seems like less and less of a life as I get older. The one thing I can try to control is whether I teach my child to be ruled by anxiety, by fear. That’s something that gets passed down, too.

There’s nothing to do but try, right? That’s the task all of us face with every challenge. At least attempt. And I’ve been surprised by how much that kind of bravery — the courage to try — has changed more people than just me. When I told my mother we were going to have a baby she laughed and cheered despite herself. She’s excited to meet him. My brother is, too. —