The Upside of Down (10 page)

Thankfully, we meet others who recount encouraging stories of their adult children with CF who are attending university, playing sports, marrying, having their own babies, surpassing the average life expectancy not by years but by decades. It is becoming clear that the variations in outcome and viewpoint within the community are enormous.

One morning shortly after attending a conference I'm in the living room engrossed in a fruitless effort—trying to fold several baskets of washing before toddler Aidan can unfold them—when my parents phone. After filling them in on the conference I comment on the high level of fatalism in this community.

‘There's so much we can't control with chronic illness, you'd think people would jump at the chance to dream their own future, not just accept the worst-case scenario. But it really doesn't feel like that's how the community is thinking.'

‘Have you read
Anatomy of an Illness
?' my dad asks.

‘No, although I'm pretty sure I've heard of it. It has been around for a while, right?'

‘It was written in the 1970s, I think, by Norman Cousins. He went through a terrible ordeal with illness and relied on some very atypical approaches to healing, including humour.'

‘That sounds interesting. And I'm all for a little humour to break up the bad news.'

‘I think it might be good reading for you because he had a distinctly different approach. I'll send it to you.'

The book chronicles Cousins' battle against a crippling (and seriously unspellable) collagen disorder, ankylosing spondylitis. His story isn't a rejection of traditional medicine, but of complementing medical treatment with work on the psyche, an idea which resonates with me. Choosing a positive approach—and modelling it for Aidan—might be one of the most important things I can do in the fight against his illness. In the end, if I'm wrong and the pessimists are right, at least I'll have enjoyed the years with my son, not wasted them dreading a bleak future.

***

It's mid-1997 when France first moves into our life. Darryl phones from work one evening about six o'clock. I'm tossing scraps of cheese and carrots onto Aidan's highchair tray with one hand while cooking dinner with the other and talking on the phone with the imaginary third.

‘Sorry, I'm running a bit late getting out of here.'

‘That's okay. Are you coming home now?'

‘That's what I'm calling about. Someone has sent me a job ad for a position at the OECD and applications close today. Um, I was wondering what you would think if I … what do you think about me applying?'

‘Where's the OECD based? Is it in Washington, DC?'

‘No, Paris.'

‘What? I'm really not sure it's the right timing, Darryl.' After so many moves in so few years I'm not ready to be choosing new curtains again.

‘I know. Realistically, I don't think I have a chance of getting the position. But it could be good to get my name out there for later, when we might want a change.'

We have been in New Zealand less than three years, have finally bought our own house and are still adjusting to life with a young child—and his illness. Even Darryl recognises that the timing could be better.

‘Okay, but please don't spend too long on it. I've got work I need to do tonight because Aidan wouldn't take a nap today.'

Much later the same night—too late for the phone to ring—the phone rings. This is a bad sign, a very bad sign.

‘Hi, this is Joe Phillips. I'm calling from the OECD in Paris for Darryl Biggar. Is he available?'

I should have known. Darryl always undersells his ability. Within a few weeks he is on his way to Paris for an interview and the job offer is in our laps by the end of the month. He is being offered the chance to work on the economics of competition and regulation from a global perspective. The OECD (Organisation for Economic Co-operation and Development) is an international body representing over thirty nations and would be a fantastic place for him to work.

A week later, on Darryl's way back from Paris, Aidan and I meet up with him in California for a previously planned family holiday at my parents' house. He carries on about the buzz and thrill of Paris and the advantages of the move.

‘You have been to Paris, Sue, so you know what it's like. I had forgotten what a beautiful city it is. There's so much to see and do in France, not to mention Europe all around us. Look at my photos …'

‘No thanks. I know it's beautiful. That's not why I'm hesitating. But it's a huge step to transplant our lives, all of our stuff and Aidan halfway around the world. And what about work for me?'

‘Yeah, that's an issue. But Aidan's young and you've said you want to be at home with him for a few years anyway. We'll only commit to staying for two years.' The French are quite protective of their jobs, so OECD spouses are not given work visas. I will never be allowed to work in Paris.

The offer comes at a confusing time for me. After earning my Masters in development issues, and years studying Spanish, I always hoped we would one day live in South America. Until recently I managed to keep this dream alive in my mind. But as I have been thinking more seriously about living with Aidan in places like San Salvador or Lima the picture has begun to shatter. One of the fundamentals of keeping him well will be a hospital with comprehensive and specialised clinical care. Genetically, CF is much more commonly found in the Caucasian population. Looking at figures in the US gives an indication of this: every year about 1 in 3000 Caucasian newborns will be born with the condition. But the figure drops to 1 in 13,500 for Hispanics, many of whom would have gone undiagnosed until the last few decades. We're unlikely to find the kind of specialised care we want in Latin America.

During our two weeks in California, we continually revisit the decision, including on our anniversary trip. This one is Darryl's to plan and he surprises me by flying the two of us to Los Angeles for the weekend. We trot happily around Disneyland, from
The Matterhorn
to
The Pirates of the Caribbean
, holding hands like young lovers with few cares—apart from the looming decision about a huge shift in our life direction. Back in our hotel room one evening, Darryl, who's still very keen to leap at the Paris offer, initiates another conversation about it.

‘So I've done a bit of research on the hospital options. It's hard to tell exactly how good the care is, but it looks pretty clear that Paris has a much larger and probably more experienced clinic than Wellington. There's a substantial paediatric hospital there with a specialised centre.'

The statistics he's able to access are limited and say nothing of any cross-cultural differences in the medical system; differences that could prove to be more complex than we can imagine.

I'm slowly warming to the idea. ‘Look, it sounds like the hospital could be better there than in New Zealand. And I definitely like the thought of burying myself in French, especially if I'm not working and have time to study the language.' Up to now I have only ever been halfway to a second language, with bits and pieces of Spanish and German floating around like useless flotsam in my brain.

‘Does that mean you're feeling better about saying yes?' Darryl asks.

‘I'm getting there … but it's still sad to think of leaving your family. And it concerns me that we won't have any family support if something happens or Aidan gets sick.'

‘I know. It's a worry. And it means starting all over with developing friendships and community.'

That's true, though in this regard the last six months have been extremely taxing. I feel like I have been chewed up and spat out by our church. This is a small suburb and the vindictiveness has tainted my hopes of ever belonging to the community here. A concerned friend in California, horrified by our treatment, refers to the OECD offer as ‘God's helicopter to rescue you'. She may be right, but I want to move to France because of the positives, not as an escape from the pain of New Zealand.

In fact, the lure of France does eventually pull me in, like a magnet. Having spent time there, I find myself drawn to the idea of its beauty, food and beguiling approach to life. I love the thought of immersing myself in it, soaking it up like olive oil on a fresh baguette. Despite all of that, I hold a lingering concern about whether we can actually
live
there? Can a Californian like me, one who is at home wearing jeans and far more comfortable with a barbeque than a flambé, exist in France? Can I happily live in a country where the average woman appears to be a size six and dresses to the nines, where men trim their nose hair and shape their nails, and homes are replicas from
Elle Décor
?

I don't know.

But in the end, Darryl and I decide that the pros outweigh the cons. A few weeks after getting the job offer we buy the
Learn French in a Month
cassettes, the next week our house is on the market and two months later we're on the plane to a new life.

6

PARLEZ-VOUS MEDICINE?

We have been in Paris just a few days. With Darryl whisked away to his new job, plucked from us like the pick of the puppy litter, Aidan and I are alone. Camped out in our hotel, with a new language and country to get my head around, I find myself facing a ‘To Do' list the length of my leg: buy a car, find a flat, locate a French language teacher, see a doctor for Aidan's ear infection, etc. Lists are bad enough, but this is a French list so everything needs to be done while speaking French, about as easy as meeting a work deadline while simultaneously learning how to use your computer.

One slight hitch with moving to France is my inability to speak French. Darryl has three years of high school French lurking in his head. Unfortunately, I spent six years studying the wrong language: Spanish. Even that's not going to help much. Our high school Spanish teacher was also the school's football coach so I can distinguish a tight-end from a wide receiver, but can't conjugate the verb
To Be
. Upon arriving in Guatemala after university, I found that the only thing I could remember was ‘
Hi! I'm Susan
'. Not even ‘
Where are the toilets?
' had stuck with me.

Now in France I feel an intense pressure about my language-learning, knowing that if I can't communicate with people I won't last a year. I'll soon be begging Darryl to re-pack our belongings and head to a country, any country, where I am not trapped alone all day with only my thoughts and the limited musings of my two-year-old son. Not only that, but without French Aidan's health will suffer. His condition is complex; if we can't communicate with the medical team, Aidan will lose out.

Why did I ever think it was a good idea to leave safe, beautiful, English-speaking New Zealand?

I attempt the most pressing task first. Although ear infections don't relate to lung care, Darryl and I have already decided to deliberately seek out French-speaking doctors for Aidan. We know the best specialist care for him will be at the main children's hospital, rather than at one of the smaller expatriate-focused ones. Since we need to get
au fait
with French medical terminology I decide this is the moment to overcome my fear of speaking terrible French over the phone.

After ten minutes rehearsing lines, I pick up the telephone in our hotel room and call a local GP. Not wanting to forget anything, I quickly spit out my French lines.

‘My son has an ear infection. Could I please have an appointment?'

Now I know enough about speaking a foreign language to realise that things generally start out hunky-dory but go pearshaped once the native speaker responds. Deep down, I'm still hoping he will reply in English, even broken kindergarten-level English would be fabulous. But he doesn't. And his response isn't only in French, but unfairly fast French.

‘Est-ce que vous pouvez venir à mon cabinet médical a cinq heures ce soir?'

He is clearly saying something about a medicine cabinet. But what? I can't make sense of it. Failing any other options, I repeat myself. And he repeats himself. Am I meant to get something from my medicine cabinet … in five hours? How does he even know I have a medicine cabinet? In fact, I don't have one yet as I haven't reached the ‘find a flat' part of my ‘To Do' list.

We repeat this script about three times. He is a very patient man. Eventually I write down what he is saying, thank him and hang up. After five minutes with my French dictionary I realise he is asking me to come to his surgery (
cabinet médical
) at five o'clock. I put Aidan down for a nap and spend the next two and a half hours memorising a specific group of French words, those that relate to ear infections. This is like only studying geometry and ignoring the algebra and trigonometry for a general maths exam. If the conversation happens to veer towards anything else—cabbages, kings or cartwheels—I'll be found out.

It's five o'clock and Aidan and I are standing outside the doctor's building. We're
outside
because I can't master the first challenge of getting in. The building is a 1970s block of flats, disappointingly similar in style to something one might see in inner-city Pittsburgh. And the front door is locked. After a few minutes of casual loitering and knocking I notice that the doctor's name—Alberici—is scribbled in small letters at the bottom of the first of three long columns of doorbells. But could this unprofessional sign really mark the entrance to his
cabinet médical
? It looks like he has invited me to his apartment! This is not what I thought I would find. By now it's five minutes after five and my precious appointment is slipping by. I push hard on the white button. Somewhere, someone opens the door without asking questions.

Once inside, we wander the ground floor, until spotting the same little sign next to a door at the end of a dark hall. I open the door to find a waiting room with scruffy white plastic chairs lining all four walls, one small window perched high up on the far wall and about six people waiting. No secretary or receptionist is present to take my name, details and insurance. Later I will learn that French GPs generally operate as a one-person-band, buzzing patients through the front door, taking appointments, organising lab requests and referrals and stashing payments in their top drawer.