The Upside of Down

by Susan Biggar

  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.

  One nurse named Nicole is particularly tender with Oliver, speaking slowly and kindly. It’s not clear whether he understands her French but he feels safe with her. In fact, his first steps are taken across the floor of o
ur little ‘motherbaby room’ (which they assigned to us immediately this time) from my arms to hers.

  During this hospital stay many of our latent differences in approach come to a head. The ‘No Child Visitors’ policy decimates any hope for family cohesion or normalcy, preventing the four of us from being together except for brief excursions off the ward for Oliver. We want someone with Oliver all the time while the staff feel we ‘hang around’ the hospital too much, getting in the way. We expect explanations; they think we don’t trust them. We worry about Oliver’s emotional state; they complain about ours. From food to beds to respect, we struggle to find common ground. Possibly if we had avoided the hospital stint in California we might have left our foreign set of expectations at home, accepting the French approach more easily. But whatever the reason, we’re unable to agree to aspects of the care. We feel uninformed about progress, don’t know who’s doing what and fear there’s no end in sight.

  Three weeks into our stay we decide to post a carefully worded note in French on the door of Oliver’s room. The sign reads:

  ‘We would greatly appreciate it if the staff would please introduce themselves to us, explain what treatments they will be doing and inform us of any changes to Oliver’s care. Thank you very much for your kindness in this matter.’

  One hour later the chief nurse, who looks by facial expressions and mannerisms to be a close relative of Scary Man, appears at our door.

  ‘Madame, le Professeur would like to see you and your husband in his office at five o’clock.’

  This cannot be good.

  That afternoon, the Professor greets us warmly in his cramped office, piled high with stacks of medical journals and case notes. Computers are dotted around the hospital though not in any useful way; an ancient IBM nearly buried under paper sits silently on his desk. After weeks in the hospital, hearing no English, we’re less fazed by medical discussions which are fully in French.

  ‘Bonjour, Monsieur et Madame Biggar, I understand from my team that there’s a problem. What is the matter?’

  Darryl and I throw guilty glances at one another, as though we’ve been called into the headmaster’s office. Caught in the act of complaining! Are we accused of trying to bring respect, communication and partnership to the French healthcare system?

  Thankfully it’s Darryl who begins, speaking far more diplomatically than I would. ‘Uh, I think it’s about expectations and maybe cultural differences. We have a slightly different view of how things are meant to work, I guess.’

  ‘What exactly do you expect to be different?’

  ‘For one thing, staff constantly come and go from Oliver’s room—we don’t know who they are or what they are going to do. We want to prepare Oliver, to translate for him, to help him get through it. But often we don’t even know what’s happening.’

  ‘It’s our policy to inform you when we have new information.’

  How do we explain that it’s not only ‘being informed’, but questions of communication more generally? Can he understand that we need to have an actual role in Oliver’s care and decisions about that care? Are we wrong to be concerned about managing Oliver’s fears and emotional needs? It sounds so pretentious to say we want to be a member of the team. After all, who are we? What credentials do we have?

  But that’s what we want.

  I chip in with another concern. ‘Oliver is still nervous here. We need to work with him to manage his fear, so it would help if we were told what procedures would be occurring and when.’

  The Professor is staring hard at us, concentrating, like someone struggling to understand a complex maths problem. He doesn’t get it. I continue. ‘We need him to trust us. When people just barge into the room it’s very difficult for him—and for us.’

  Our background and experiences have not prepared us for the French approach. The American healthcare system taught me to ask as many questions as I could, hopefully in the nicest possible way, and expect answers. New Zealand’s holistic approach is very different to the French way.

  Several days after our meeting with the Professor I receive a formal visit from the staff psychologist.

  ‘I am concerned, Madame, because the staff tell me you are here every night and most days …’

  ‘It’s true that I’m here much of the time. My one-year-old son is currently hospitalised.’

  ‘But you need time for yourself. You shouldn’t be here so much.’

  ‘Actually, it’s not always me; sometimes friends and family relieve me and stay with Oliver.’

  ‘But you don’t need to leave people here to watch him; the nurses will do that.’

  ‘Do they have time to play with him? To take him out of his cot and walk around the room? To go for walks outside?’ I have seen the long-staying babies on the ward, many of whom appear to have few visitors. They sit passively, staring at the bars of their cots.

  Exasperated, she continues.

  ‘Madame, go meet your friends at a cafe. Go shopping and buy yourself some new clothes. Let the nurses and doctors get on with their jobs.’

  Of course! Why didn’t I think of that myself? I’ll feel much better about my son’s condition and his rapidly worsening psychological stress if I stroll down to Printemps and drop a few thousand francs on a new outfit. I must have been deluded in thinking we were helping the staff get on with their jobs by playing with and feeding Oliver, by caring for our child.

  Clearly, we’re still not speaking the same language.

  After some improvement in his cough—though without any definitive understanding of the source of the problem—Oliver is finally released. That day I huffily swear to Darryl that within a month I’ll be on a plane out of France forever.

  It turns out that following through on threats is not one of my strengths. Once we’re away from the hospital, back home again in Suresnes among friends, I begin to relax. For months to come, when we show up for a clinic visit I begin mentally packing my bags, fearful of future inpatient stays. But—thank you, thank you, thank you—whatever had been troubling Oliver’s lungs that dreadful summer clears up. Neither he nor Aidan are hospitalised again in Paris, which probably explains how I manage to stay another three years.

  12

  HERE AND THERE

  Before having kids, ‘international travel’ was a glamorous term, a happy little construct I associated with freedom, adventure and exploration. During my two years living in Germany directly after university I flitted through many countries, from Sweden to Croatia to Hungary to Israel, heading off for weekends away on short notice carrying little more than a passport and a change of undies. When Darryl and I lived in London we were slightly more weighed down by our jobs, house guests and other commitments but still managed nearly effortless jaunts to the Continent.

  However, after adding two small children with a complex condition to our lives, international travel has come to mean an enormously challenging physical and emotional experience, one that lasts far longer than the trip itself. The anguish of long-haul flights with young children begins weeks in advance. Will they sleep? Will I spend sixteen hours dragging a hollering nineteen-month-old back out of First Class? And, upon our return, the pain of the trip lingers through a minimum of four post-trip nights reading Big Red Barn and watching Wiggles videos with them at 1:30am as they adjust their stubborn little body clocks.

  Each time we plan a trip, Darryl and I enter into the same dialogue about the risks and benefits of travelling so far with them. Even if we limit our air travel only to visits to our families, with one half in the US and the other half in New Zealand, that still makes for a lot of air time. A week or so before a planned trip to New Zealand my French language teacher raises the issue with me.

  ‘Susan, it isn’t right that you are flying so far with your children.’ After several years of studying with this woman I’m accustomed to her forthright manner.

  ‘What do you mean it’s not right? Because of the jet lag?’

  ‘No. You are ta
king a risk with their health by having them on the plane with so many other people for such a long time,’ she answers in quick French, her hands whipping around, stirring the air in front of her as she speaks.

  ‘Aidan and Oliver are both fine now and we don’t have any evidence that they’ve picked up bugs on the planes in the past.’

  ‘Maybe not, but that doesn’t mean it couldn’t happen. It’s rather cavalier of you and Darryl. Is it really necessary that you travel?’

  ‘If we want the children to know their grandparents and their extended family then we have to travel. This trip is for Darryl’s mother’s 60th birthday party—it’s a surprise that we’re coming.’

  ‘Couldn’t you take a boat or something?’

  ‘All the way to New Zealand? That’s a very long way. I think we would miss the party.’

  It’s true that our total travel time will be long; because we’re going via the US, it will be more than thirty hours door-to-door. But thankfully Aidan is now five years old and Oliver almost three and they will hopefully be better travel companions.

  About twenty-two hours into the journey to New Zealand, I become distraught by the lack of sleep and the general irritation of my children. I’m ready to use the emergency exit. I’m sure this must be why families with young children aren’t allowed to sit in the exit rows: it’s too tempting.

  ‘I’m going to the bathroom,’ I announce to Darryl who glances up at me glazy-eyed, not listening. I pass Oliver across to him. ‘I just can’t cope anymore … I’m too tired.’

  Picking my way carefully down the dim aisle, tears of exhaustion cloud my eyes, making progress slow. I pass row after row of sleeping passengers, several even snoring, which is pretty bragging behaviour on a long-haul flight. Aidan and Oliver have been managing to tag-team on sleep with one of them awake the entire trip. I lock the toilet door, sit down and settle in. I waste a good quarter of an hour examining the soaps and lotions and kill at least another twenty-five minutes pondering the absolute senselessness of marrying a man from the other side of the world. What was I thinking? There must have been plenty of perfectly decent American men. I’m not sure where the time goes but about forty-five minutes later I feel sufficiently recovered to return to my seat. By now Darryl, who hardly acknowledged my departure, leaps up when I return.