by Susan Biggar
It would help if I could at least accuse Darryl of burying his head in the sand. Yet he digs in to the research, reading papers and books and mastering much of the material with ease. And then he does what I can’t possibly manage to do: he accepts it. It’s as if one morning he gets out of bed and says to himself, ‘Okay, my son has cystic fibrosis. Now, should I have cereal or porridge for breakfast?’
That infuriates me. I mean, here I am contorting myself into a psychological double knot while he whistles his way to work each day. He manages to spend his days happily writing papers for the New Zealand government on competition and regulation—as if nothing ever happened.
The two of us have the same conversation about this again and again.
‘Don’t you even care, Darryl? How can you be so relaxed about something so serious?’
‘Of course I care. But how is worrying about the future going to help? I think we need to get on with our lives.’
‘But how can we get on with our lives when we don’t know what’s going to happen to Aidan? I just don’t get it. How can you be so unmoved … I can’t simply go on living like everything is normal when Aidan’s lungs may be getting worse each day.’
‘What choice do we have? We need to keep him as well as possible and give him the happiest life we can, by being happy ourselves.’
‘I don’t know how to be happy living with this.’
I try to back off and let him be, which is about as easy for me as watching him go to work with his fly down and a ‘Kick Me’ sign posted on his back. Although we may share some important genes, we have never shared the DNA for emotions. Darryl is more comfortable demonstrating his love by the things he does—alternating night feeds with me, morning cuddles, weekend afternoon naps with our pint-sized baby prone across his chest. When we discuss the future, I can see that his fears are much the same as mine, but our differences in coping mechanisms continue to cause tension.
We also have disagreements about the minor parenting dilemmas: ‘I changed his nappy last time’, ‘No, at only four kilos and still all slumpy I don’t think he’s big enough to go in the seat on the back of your bike …’ But we also learn to make up more readily, recognising our dependence on one another: we’re in this together and need to make it work. I don’t appreciate, and try to forget, the hospital psychologist’s warning about the high rate of divorce in couples living with chronic illness.
As the first months pass, the intensity of our life begins to lessen, the way new love slowly mellows. Days and even an occasional week pass with his illness barely entering my mind. In those early dark days it was hard to imagine laughter and beauty returning to our little world. But it does. Each day of living with this condition teaches me more about giving Darryl slack and not panicking so much, about controlling fear rather than allowing it to control me. I learn to focus on the joy in my life, finding it in Aidan, in Darryl, in my spiritual life, in the outdoors—in all the places I experienced it before illness hijacked me.
And Aidan’s well, very well. Each day, week, month of good health buoys my spirits. Every kilo he puts on takes one off my shoulders. While still reading as much medical information as possible, I’m also realising that life is more liveable if I concentrate on the success stories. Call it denial, but if there’s a friend’s nephew who’s thriving with CF at age fifty-four then there’s no reason our son won’t someday do the same. Or better.
Everything I have learned about the condition so far has both confirmed the seriousness of our adversary and given me a crack of hope that it can be beaten.
3
ADJUSTMENTS
By the time Aidan entered our life, Darryl and I had been married four and a half years. In that short period, we had lived in three countries on three different continents and in five homes. It would be easy to blame Darryl for our peripatetic lifestyle. After all, marrying him was marrying another world, one which he was unwilling to ditch to become solely American. And besides, he’s my husband and husbands are, by definition, easy to blame.
But maybe that’s not completely fair, as signs of an international bias were evident before he came into my life. By the time we met, I had finished an International Relations degree, worked in Germany for two years, just spent several months studying Spanish in Guatemala and was launching into a Masters program with a global focus. The wheels had been greased for an international life.
We remained in Stanford, California for the first year of our marriage; I worked as a development director for a nonprofit organisation while Darryl finished his PhD. It was a luscious year as newlyweds, but if I had thought our similarities would overwhelm any cultural or other disagreements, I was mistaken. There certainly were differences, both big and small.
One morning I stepped out of the shower to find him frantically searching under pillows and through backpack pockets as though hunting for an unexploded bomb.
‘I can’t find my khakis anywhere,’ I heard him say. Unable to fathom the urgency of this, as he was already dressed, or why he expected to discover them stuffed into a backpack pocket, I tried to help.
‘Have you tried looking in the closet? That’s where I would normally put them.’
‘The closet?’ he repeated, staring at me like he didn’t know whether to thank me or call the police. ‘Why on earth …’ trailing off as he headed towards the bedroom.
‘Because that’s where clothes are supposed to live.’
‘What are you talking about? I said CAR KEYS!’
Attempting to adjust to his non-American vocabulary, I soon found myself getting in the lift and going down the footpath to the dairy. It was a two-way street as Darryl came to understand that in America chips are fries, crisps are chips, only a couple can be engaged (never a telephone), and the toilet is always called the bathroom, whether there is a bath or not. For me, the car was the most confusing and I ended up with a jumble of boots, bonnets, glove-boxes and windscreens.
Any marriage requires adjustment, I told myself. As other newlyweds learn to take out the rubbish and squeeze the toothpaste from the bottom up, so we found ourselves adjusting not just to cultural and linguistic differences, but emotional ones also. From the beginning, we differed in our attitude towards conflict and communication. I have always tended towards the ‘get it all out there’ approach, which was how the game was played in my household, comprised of five women and my poor old dad. But Darryl, possibly because he was raised in a home with the ratio of four men to two women, would rather hum a merry tune and get on with life—preferably avoiding working through issues pieceby-painful-piece. These differences, though irritating, were manageable when it was just the two of us disagreeing about holiday plans or trying to decide on a movie at the cinema. They would prove far more challenging when the stakes were raised several years later.
After Stanford we moved to London. Darryl taught at a university and I worked as a writer and ran special projects for an international aid agency. Over the two years there we provided a place to stay for travelling New Zealanders and Americans, hosting seventy-five friends, three of whom remained with us for more than six months each. The toilet overflowed repeatedly, the fridge was forever empty and we ran regular tours to the Imperial War Museum. During that time we travelled across the UK and Europe, including visiting friends on a remote island in Sweden, crashing our motorbike in Crete and nearly wrecking our relationship on a mid-winter tandem bike tour in Cornwall. With a ‘date night’ every Thursday to defend our marriage against the chaos, we were happy.
Yet after two years in London we were ready to start thinking about a family and our grimy surroundings and hectic life made it feel out of reach. Darryl had been living overseas for ten years and wanted to go home, so when he received a job offer from the New Zealand government, we jumped at it.
***
Wellington, New Zealand’s capital, rests on the bottom lip of the North Island. It’s relatively small, with a population approaching 400,000 and holds the distinctio
n of being the southernmost capital city in the world. It is reminiscent of San Francisco: hilly, packed with stately Victorian homes and surrounded by water on several sides. We quickly discovered that, like San Franciscans, most Wellingtonians are devoted to the place and its idiosyncrasies and wouldn’t consider living anywhere else.
I had only been to New Zealand once before this move, seven months after our wedding. On that visit I had found it a lush, green land where rain and sheep are plentiful and the people relaxed and gracious. I was welcomed into Darryl’s circle by his family and friends, taken house-to-house for a nonstop food-fest and more cups of tea than I’d normally drink in a year. In fact, the three-week visit had been part holiday, part marriage course as meeting New Zealand was like meeting my husband again for the first time. His attitudes and behaviours began to make sense there, as though watching a blurry picture come into focus.
It wasn’t until that first trip that I began to understand why Darryl is so trusting of strangers and, in my view, careless about security, rarely locking the car and regularly leaving his keys in doors. While on our visit we went to some outdoor thermal pools. There was no attendant, just a sign with prices and an ‘honesty box’. A similar box appeared at a blueberry-picking farm hundreds of kilometres south. When we turned up in a small beach town with nowhere to stay, the owner of the surf shop rented us a catamaran and, upon our return, handed over directions and the key to his house. We ate fish and chips wrapped in newspaper and spent the evening square-dancing at the hall with him and other locals before spending the night on the floor of his living room.
One of the aspects of New Zealand that surprised me the most was its wild, untamed nature. I had expected trimmed lawns and deciduous trees, but was met with jungle bush and native plants such as Manuka and Pohutukawa which grow wildly or bloom in stunning colours. Even the beaches were less predictable than I anticipated—some, white sand and turquoise water, others black pebbles, cliffs or rocky outcrops overlooking tumbling seas. Interestingly, I could already see that defiant, untamed side in my new husband. Smart and able to ‘follow the rules’ but contrasted by a burning desire to push the limits and a fierce independence. These were things I admired in him then, but which would test our relationship in the years to come when serious pressure would be placed on us.
Arriving in New Zealand the second time, on a one-way ticket, I was surprised by the daunting nature of anonymity. If we had been moving to my hometown near San Francisco I might have still known people. My roots are there. When visiting California, I inevitably bump into a classmate from high school at the bagel shop or spot my inspirational English teacher having breakfast at The Half Day Café. Certainly if I linger long enough at the post office I will recognise someone. It’s that kind of place. I never realised the enormous value in having points of contact with people, a common background and shared memory base. My parents’ friends knew me when I was climbing trees, later with pimples wishing for boyfriends, and now as a woman. A history exists there. In New Zealand, there was none. I was unknown.
We hadn’t been in Wellington long when we were invited to a party by one of Darryl’s new work colleagues. It was a warm summer night and there were at least fifty people congregating outside on the spacious deck with plenty of laughter and a generally friendly atmosphere. To our surprise, we were both given a sheet of paper with boxes, each box containing a statement like Been trekking in Nepal, Eaten guava ice cream, and Never owned a passport. The goal was to find people who could sign-off on each box. I have friends who would rather scrub the toilet than play a game like this, but as an extroverted American I was finally in my element.
After fifteen minutes working the crowd I approached a middle-aged man who was standing alone. Thrusting my sheet towards him with a smile I said, ‘Hi, I’m Susan, can you help me?’
He smiled in a rather sweet, surprised way and took my sheet, handing me his. ‘I’m Geoffrey. Uh, I guess it depends on how you can help me.’
We spent the next few minutes joking back and forth with each other about what crazy things we had or hadn’t ever done: Have you ridden on a camel? Do you sleep with your socks on?
About then I noticed Darryl hovering nearby with an agitated, I-need-to-talk-to-you look on his face. I ignored him and continued the banter with my new friend until he was drawn away by our host. Darryl immediately hustled me into the corner, like corralling a wild animal.
‘Do you know who that is you’ve been speaking to?’ he barked, both exasperation and embarrassment in his voice.
‘Of course I don’t know who he is. I don’t know who anybody is, remember? But he’s nice and he signed-off on two of my boxes.’
‘Sue, forget about the boxes. You just asked the former Prime Minister of New Zealand if he wears socks to bed!’
***
Now, just a year after arriving in New Zealand, here I am facing a towering wall of adjustment, far bigger than any cross-cultural clash I have ever experienced. How do I live well—and teach my young son to do the same—alongside an illness that has the potential to overshadow everything?
My priority now that Aidan is better is to restore joy to my own life. Knowing I have found tremendous pleasure in exercise and being outdoors, I decide that’s a good place to start. By this time we have bought a house in the sleepy community of Island Bay. A semi-restored 1921 cottage, it’s not terribly practical for a young family: deposited on the side of a hill with no steps, we reach the house via a footpath past two other houses. Our view peers out over the village and on towards the South Island. The suburb is bracketed by steep hills with a narrow valley leading out to a bay where an island rests in the sea, almost as an afterthought. When the southerly wind sweeps up from Antarctica our beach can be its first landfall and it is often bitterly cold, even in summer. Despite the exposure, Island Bay must have been an early settlement because 100-year-old houses dot the streets and rest uncomfortably halfway up the steep inclines. The town is quaint and quiet and from the day Aidan is born I’m determined to get out with him and explore the neighbourhood.
I soon realise that slowly pushing a pram around town is not going to work for me. Luckily I have roller-skates. Not just any skates, these are the old beige four-wheelers with the big brake tucked beneath the toe, identical to those worn by waitresses on wheels at American drive-in diners. After a couple of nerve-wracking incidents trying to pick my way slowly down the steep hill from our house—on skates—while grappling with the pram, I decide to walk down sock-footed before setting off.
Once en route, we love it. Okay, at several months of age Aidan doesn’t say much but I take his silence as tacit assent. Skating through the streets with the brisk wind whipping my shirt and hair into a frenzy is liberating. It’s total escapism from dishes, mouldy grout, piles of tiny soiled clothes and the weight of worry. Exercise, especially outdoors, quickly becomes crucial for me, where I search for hope and help. As we break out to the coast road, the sea is smashing heavily into the rocks, sprinkling us as I propel the pram forward. Push glide pray, push glide pray, push glide pray.
Occasionally we stop at the Brass Monkey, a cosy shack of a cafe which sits on a curve of the coastline, facing the open sea. It is always snug and serves comforting staples like clam chowder with homemade brown bread and mugs of hot lemon, honey and ginger. I gape across at the water, sometimes tranquil, other times raging, cuddling my cherished little boy tightly on my lap. These are good days.
One morning we leave the skates behind and head into town to meet Darryl for lunch. Aidan’s in the pram as we walk up to Darryl’s office; although now about three months old, he’s still very small. In fact, he looks something like a cross between a baby and a pinto bean.
‘Oh, hello. How are you, Susan?’
I turn to see a couple I know only vaguely, the wife is a colleague of Darryl’s. They were aware I was pregnant, but haven’t heard that our baby was born prematurely. Or that he has been diagnosed with cystic fibrosis.
&
nbsp; We plough through the standard see-saw of new baby chit-chat.
‘How was the birth?’ Are you getting any sleep? And finally it comes, the question that opens the door, the one I’m half wishing for and half dreading: ‘So, he is totally fine now?’
I pause momentarily, wondering about the question, which was asked in an assume-the-positive manner: ‘He is fine, isn’t he?’ Not sure what to make of that—and not yet practiced at reading social clues about illness—I plunge in.
‘Actually Aidan has cystic fibrosis, a genetic condition which means …’ Mistake! Reverse! But, of course, I can’t. The words are out and the couple appears to have been stricken by a severe attack of social awkwardness. In unison they begin an odd chorus of shifting their weight, shuffling their feet and glancing at their watches. Clearly there are other things they would rather be doing, like having major dental work. I quickly wind up the conversation and hurry away to find Darryl.
‘I feel totally humiliated,’ I tell him after dishing out all the details of the encounter.
‘Why? It’s their problem if they can’t handle talking about this.’
‘I don’t know … I just don’t understand what happened. Is illness one of those ultra-personal issues, like sex and salaries, which aren’t meant to be discussed?’
‘Maybe it’s just them. They might be expecting a baby and are panicked that it could have an undetected genetic condition.’