The Upside of Down (19 page)

‘That will be eight hours in the car for him if he and I go straight back to the lake.'

‘I know. I told him he could just stay here with everyone else but he wants to come.'

‘Okay. See you tomorrow.'

The following day Darryl changes places with me, staying at the hospital while I drive to the lake to finish out the week there. It's such an extreme change from the hospital: quiet, beautiful and serene. But merely transporting a body to a relaxing place does not allow the mind to relax—and mine is not in the mood for relaxation. I swim, canoe, hike, all the while wishing for Oliver's improvement and my own ability to release the worry, to find peace. It's like drilling holes in the side of my skull and then waiting for the stress to slowly trickle out.

Chronic illness worry is different to medical emergency worry. I'm not concerned that he won't make it home. He will. But how will this infection affect him next week? Next year? In ten years? Will it be the beginning of a downward spiral, a negative momentum that will take him places we don't want to go? While at the lake my brain takes me places I don't want to go, affecting my eating and sleep. Fear is a driving force right now.
Letting go of the fear does not mean letting go of Oliver
. Repeating the chorus, I try to unpick my sticky fingers from the fear I have been nursing for some time.

Meanwhile back at the hospital, Darryl is going through much of the same culture shock as I was at the hospital.

‘The menus are amazing and all the extra food we can order for him,' he says when I phone from the middle of the lake. ‘Plus, everyone is so much more helpful and friendly than in France. It makes a big difference to the whole experience.'

When we return from the mountains, Darryl and I trade off staying with Oliver for the following week. We both are surprised by our encounters with the medical team, who do rounds in pairs rather than by the dozen and ask us ‘how do you think things are going?'. The first time it happens to me I'm dumbfounded and stare at them vacantly, as though they're speaking Vulcan. After several years of living in a medical dictatorship, with my confidence continually eroding, I don't know what I think nor do I trust my own judgment.

But even warm and laid-back can have its own downsides. The daily routine is unpredictable and harder to work around. Medications and treatments are sometimes late and Oliver is less settled with the slightly topsy-turvy routine. Hygiene etiquette, though probably perfectly satisfactory, feels dodgy after the French hysteria about sanitisation. Oliver is not allowed out of the building at all, even for a quick walk in the stroller. And thank goodness for our excellent insurance from the OECD because on our way out the door after twelve days, we're handed a bill for US$52,000.

11

COLLISIONS

The unpredictable nature of cystic fibrosis is a little like living in London: you can never count on the weather so when a good day comes you learn to seize it. When good days come in our life, we are learning to grab them.

With another wedding anniversary approaching and the kids both in a good patch, Darryl calls his sister Sharon in London to come and babysit for a long weekend. Naturally I am kept in the dark about our destination. That is, until we pull up directly in front of a river barge which is the length of a big rig and probably the weight of about three of them. We're given a fifteen minute briefing in technical boat-French, plus a brief stint starting the engine and parking the monster—the latter like shuffling an elephant into a walk-in closet—before the relaxed Frenchman waves us on our way from the shore. ‘
Bon weekend!
' he yells as we slowly chug away down the river.

We are alone on a barge on the Canal de Bourgogne, an impressive canal over 200 kilometres long with an astounding 209 locks. This may be a very short-lived journey as I can't imagine us successfully negotiating even one of the 209. The ‘How to navigate a lock' bit of the orientation went something like, ‘Just put the barge in reverse as you enter and you'll be fine.' Apparently the locks are nearly all unmanned this time of year with no crusty old lock-keepers to shoot the breeze and massage us through.

Though this trip will be only a few days, we need some time to slot the pieces back into our somewhat untidy marriage. During the clouded times of Oliver's acute illness and hospital stays we have been shoving our relationship out of the way, ignoring disagreements, leaving arguments unresolved. We have only had space for getting out of bed, going to work, managing Aidan and trying to get Oliver well enough to be discharged from the hospital. While that minimalist approach to a partnership may work temporarily to pull us through a crisis, it's not going to nourish our love for years to come. And if our life is likely to be crisis-littered, we need to work out a long-term survival strategy.

A couple of hours into our cruise, after serpentining our way downstream and nearly colliding with several boats, I need some caffeine.

‘Do you want to pull over and have a coffee?' I ask, fully expecting the answer I get.

‘No, I'm doing great. But you go ahead.' Darryl's not just great, he's ecstatic. In fact, his happiness is like so much sweet syrup, dribbling thickly off his body as he stands at the wheel of our own barge. He's the master of the boat, explorer and, unfortunately, constant innovator.

Several minutes later, absorbed by my book and coffee, I fail to notice him go past the table and out the back door of the cabin. It's only when I hear a loud thud that I glance up and notice that he's on the roof of the boat, apparently struggling to unlock the sunroof, an accessory I would have expected to find on a BMW not a French river barge. This would be fine except for the fact that he's meant to be driving the boat. As I jump up I can see that we're close to crashing into the bank of the river.

‘Darryl, what are you doing?' I scream, jerking the heavy wheel to the left, hoping to persuade the floating tank to veer away from the river's edge.

‘It's such a magnificent day I thought I could sit up here and steer the boat by poking this pole through the sunroof', he answers, holding up a two-metre-long wooden pole. This is Darryl. This is how he thinks all the time—carefree, adventuresome and utterly ridiculous. If I weren't so panicked about preventing a collision I could almost laugh.

Almost.

‘Could you please get down here now … because I can't get it to straighten out and, oh no, now the back's swinging around and we're going to hit the bank. Ouch!' He is nearly tossed off the roof by the impact. ‘Sorry Darryl, I didn't mean to do that.'

‘Okay, okay, I'm coming,' he says while climbing down. I'm still trying to pull the boat into line again. It stops like a train, needing about a kilometre before it even contemplates slowing. ‘Hey, the door is locked back here,' he yells. ‘Can you open it?'

‘There's no way I'm letting go of this wheel. I can't believe you didn't even unlock the door before you left!' Eventually he climbs in through a window and together we get the barge back on course.

As it turns out, this becomes the theme of the weekend. Shortly after that first mishap we get ourselves stranded on a sandbar and later I rear-end another barge by approaching my first lock too quickly. The next day we are awoken from a nap by a much larger boat grinding past us in a narrow spot and the third day we're herded off the river by an elderly man wobbling along the towpath on a bicycle, waving his arms and yelling ‘Too much rain … we need to open the locks which will flood the river!'

Despite the troubles, it's still the window we need—the slow, uninterrupted breath—to remind ourselves of the value of this relationship, of both the pleasure and the
umph
it gives even when life is sucking both from us. Over the few days we enjoy good food and wine (stumbling upon fabulous restaurants each night), ride our bikes along the towpath and generally re-spark the spirit of fun and adventure that we originally loved in each other. The pattern of the weekend may become the pattern of our life together: swerving past the stressful near-misses while figuring out how to get ourselves back on course.

***

After several years in France we are beginning to collide heavily with the French medical world. We are quarrelling, like a married couple, with the healthcare system as the small annoyances evolve into monumental rifts. The French technical expertise is highly rated but many of the cultural habits are hard to swallow. Doctors worldwide practise tardiness, yet the French have made it an art form. Our Professor repeatedly sweeps into the clinic more than two hours after his first appointment, with a litter of young Fellows trailing behind. Apologising never crosses his mind. Not because he's rude. He's actually a very polite man and hugely revered—a French Dr Spock. But there's no egalitarianism because this is a monarchy. And he's king.

Ironically, the one day I happen to arrive twenty minutes late for our clinic appointment he obviously has somewhere else to be. Nurses, young doctors and physios are parked outside his office, talking over each other and gesticulating aggressively in that Romance language way.

‘
Madame
, you are late! Why are you late? The Professor is waiting for you!' I am reprimanded from all sides of the pack as they usher us into his presence.

How can I ever form a partnership with this medical god?

Maybe it is my expectations. Growing up in California I was taught that medicine is a participatory dance and the doctor is the partner, not the instructor. After Aidan was diagnosed we gobbled up facts day and night about our new adversary. We believed that as part of his overall ‘wellness team', the more we could learn, the more we could contribute. Not as medical specialists but as highly motivated parent specialists, knowing our child in the context of CF. In fact, the more we read, the more convinced we became of the importance of our role alongside our doctors.

However, few doctors suffer through more than a decade of medical training to just become
partners
with patients. Even in New Zealand a zealous thirst for information and communication with our medical team had, on occasion, backfired. Back then Darryl would gently remind me that being a guns-blazing American would not always give us the best outcome for Aidan. If I wanted to receive quality care for him I needed to learn a gentle patience and deference which, unfortunately, didn't seem to come naturally.

Now in France with two young children in need of ongoing medical care, faced with an even more rigid and hierarchical system and a confusing medical culture, I have to persevere. Playing by their rules is the only way to go, yet not losing the fire in my belly is critical. Merging the two will be the challenge.

So I become careful about arriving on time to each appointment with a page of questions and a wad of photocopied medical articles, a distinctly non-French habit. And our Professor, to his credit, patiently wades through them with me while the junior doctors gape at his forbearance. However, I wonder at times if he's uncertain of how to handle the situation as he tends to agree to my every suggestion. When I enquire about an experimental use of an old drug, he writes out a script. Another time when I question one aspect of Oliver's care he offers to change it. This is unsettling. I am hoping for a robust debate, not to be told I'm right each time—especially when that is almost certainly not the case.

***

It's a Friday evening, a sultry September night in Paris. Jean- Pierre arrives late. ‘
Trop de circulation
.' Too much traffic. A sweltering night draws Parisians into the streets in droves. Jean-Pierre is overheated and weary. I'm worried. Our brief chat in the kitchen after physio seals my fear.

‘Oliver is not right, Susan. His cough has worsened and he's not breathing very easily.'

‘I know, of course I know. But what should I do? Take him to the hospital?' He nods. ‘Tonight?' He nods again. It's an unnecessary question, one that I could answer by the shortness in my own breathing. I had begun packing a bag an hour before Jean-Pierre's arrival.

But there will be added complications this time. Darryl is in Moscow. From there he is to fly directly to Rome, returning in a week. Booked in to give a pile of talks on competition in the telecommunications industry to Russian and Italian bureaucrats, he's unlikely to weasel his way back to France any time soon. Certainly not tonight. And thanks to a series of my own short-sighted decisions about marrying a foreigner and moving with him to other countries, even our nearest relative is too far away to help tonight. Aidan, at three-anda-half, will not be considered an acceptable stowaway at the hospital. Children are not allowed to even visit the ward to see their sibling.

We are fortunate to have Marie-France. An hour later she meets us at her door, a steadying hug for me and a freshly made bed for Aidan. I don't know when I'll be back for him, apart from brief visits, and she doesn't ask. With Darryl away, it could be a week. Though currently very healthy, Aidan is complicated. His daily regime includes four different medications, several dozen enzymes and morning physio visits from Jean-Pierre. Marie-France quickly scans my scrawled instruction sheets and nods her head confidently, ‘Don't worry, Suzan, dzat's fine,' as if she's agreeing to water my plants for a week.

In the end, this hospital stay lasts a month.

After the first chaotic week running back and forth to see Aidan at Marie-France's, Darryl returns from overseas. But within a few days, the wheels are beginning to fall off: there's no food in the house, Aidan is grumpy and stressed, Darryl's under pressure at work and struggling to keep the house afloat while I'm isolated and anxious at the hospital. With only a few days' notice Darryl's mum, Raewyn, flies in from New Zealand to take care of Aidan and the house.

Meanwhile, friends show up at the hospital. John, a friend from our Paris church, is the former CEO of a large PR company but currently unemployed. He comes regularly to play with Oliver, feeding him mushy banana and reading
Goodnight Moon
while I rest or go home for a change of clothes. Laura, who works at the OECD with Darryl, sneaks out to the hospital during lunch to play peek-a-boo and giggle with Oliver. Others bring us meals, run errands, and pray—for his improvement and our crumbling state of mind.