by Susan Biggar
It was eight o’clock in the morning six weeks after our arrival in Paris when the front door buzzer sounded through the intercom. I picked up the phone, ‘Oui?’
In quick French I heard, ‘Hello, it’s Jean-Pierre, your new physiotherapist.’
Aidan was standing by the door with me. I flashed him a weak smile. ‘It will be fine, Aidan. Don’t worry.’ Inhaling deeply, like a last breath of freedom, I pressed the buzzer to open the downstairs door and allow this stranger into our lives.
During our first hospital visit the week before, the physiotherapist—Scary Man—was gruff and business-like, serious about his task, no time to ease the fears of a young toddler who didn’t speak his language or understand his actions. After that deeply upsetting incident, Jean-Pierre would need to earn our trust.
From the first glance he was not what I expected. Standing at the door of our flat, Aidan and I watched as a man in his early thirties stepped from the lift with a wide grin on his face, extending his hand for a friendly shake. He was very tall with huge, broad shoulders—about the build of a New Zealand All Black—and almost no hair. He was sweating and looked as though he had been rushing.
Once seated, I placed my language limitations on the table.
‘I’m sorry but my French isn’t very good.’
‘That’s okay, my English isn’t good either. But I can understand it. If you speak slowly to me in English, I’ll speak slowly to you in French.’
We chatted casually about moving to France and Aidan’s overall condition. Jean-Pierre was patient and relaxed as though he had nowhere else he needed to be that day. I told him about our experience with Scary Man. His response was reassuring.
‘That doesn’t surprise me because the chief physiotherapist is very intense. And he’s committed to making certain every patient is receiving the right kind of physio from the right person every day.’
‘Fair enough. But it would have been so much easier if he had just taken a bit of time to calm Aidan or talk to me,’ I said.
‘Yes, he sort of operates in his own world. I have heard that he regularly wanders through the neonatal ward kissing the babies on the forehead.’
‘That’s odd. Why?’
‘Because there’s no test at birth here for CF. He believes he can identify those babies because their skin is so much saltier,’ Jean-Pierre explained.
‘So he’s single-handedly performing the national screening test?’
Jean-Pierre nodded. Turning towards Aidan, ‘Pleeze come ere to zee sofa, Aye-don’ he asked in English and in a voice far too gentle for a man his size, like Arnold Schwarzenegger whispering sweet nothings.
Busy playing with his Brio trains, Aidan looked to me for guidance.
‘It’s okay, honey, I’m right here. It’ll be fine.’ I gave Jean-Pierre a fierce it-had-better-be-fine-Mister kind of look. Aidan climbed up on the couch. Jean-Pierre rolled up the sleeves of his jumper before placing two enormous hands on my son’s small chest and pushing down firmly just like the hospital physio. Aidan began to cry and squirm immediately. This was not a good start.
Knowing the importance of first impressions, Jean-Pierre wisely decided to do only a short session (ironically called a séance in French). The length would increase over time until it reached fifteen to twenty minutes each session. We agreed that Jean-Pierre would come every morning initially, but we would add evening sessions if Aidan developed a cough. As it was the start of winter I knew we would be seeing this man a lot, probably too much, in the months ahead.
From our second-floor window I watched as he ran across the parking lot to his car, looking like he was late for his next appointment, oversized black bag draped across one shoulder. Although he was clearly going to be an imposition in our lives, I liked him.
***
Now, almost a year later, we’re bringing Oliver home from the hospital. The next day it’s time to begin his physio. Jean-Pierre holds him tenderly for a cuddle before laying him down on the nappy changing table in the kids’ bedroom to begin the now familiar CPR-like manoeuvre we have learned with Aidan. But by this time Aidan’s a strapping three-year-old while Oliver is only about the size of a scrawny melon. The massive All Black hands swallow my son. I can feel my blood pressure rise.
‘Vas-t’en,’ go away, Jean-Pierre says, waving me off into the kitchen. It has to be done and we both know it. His wave-off is an admission of the difficulty, an acknowledgement of the pain and frustration of handing over my newborn son.
By now Aidan has warmed to Jean-Pierre. A month or so after we arrived in Paris, Jean-Pierre had brought a bright green rubber ball as tall as Aidan, encouraging him to jump on it and run and play as much as possible. The activity is great for his lungs, though doesn’t do much for improving international relations with our downstairs neighbours. Normally Aidan cooperates with physio so he can quickly return to playing. But some days he unexpectedly screams and struggles from start to finish. I pace the kitchen, kicking our cupboards and muttering about this nasty illness. Jean-Pierre, though kind, never backs down. They always finish the séance.
‘He must do it,’ he reminds me on his way out the door one day, ‘Même s’il est têtu.’ Even if he’s stubborn.
At the door, Aidan attaches himself to my leg, red-faced and angry, staring suspiciously at both Jean-Pierre and me. I dread those fighting days when I am left emotionally depleted, wondering how to be the protector of my son’s physical health without destroying his mental health.
One morning, while on middle-of-the-night feeds with Oliver, I oversleep and am still in my pyjamas when I answer the door to Jean-Pierre.
‘Sorry, I just woke up. Come on in, I’ll get Aidan.’ Popping my head in the door of his room, I find him sitting on the floor with a pen and paper. ‘Come out, it’s time for physio.’
I return to the living room. Several minutes later Aidan still hasn’t arrived. I am anxious to slip out and get dressed and I know Jean-Pierre’s always tight on time in the morning. I head back towards his room.
‘Aidan, what are you doing? We’re waiting for you.’
Finally he emerges from his room, blond hair a scruffy mess, wearing his blue pyjamas with the white clouds and a defiant look.
‘Jean-Pierre, I made a sign for you,’ he says, pointing to his chest, where he has stuck a yellow post-it note with some illegible scrawling on it. He can’t write words yet. He strides across the room, repeatedly jabbing his finger against the note and declaring ‘The sign says ‘No physio!’’
Often the day after a particularly bad battle Jean-Pierre arrives with a peace offering, sometimes a book or sweets, once a cool electronic game. When he returns from exotic holidays, a penchant of his, there is often a token for Aidan (and, later, Oliver) such as the carved, wooden elephant from Tanzania.
Despite disliking physio, we are all learning to trust the giant Frenchman.
Darryl is usually walking out the door for work just as Jean-Pierre arrives. At times this really frustrates me, especially on the challenging days. One morning Aidan’s tossing a tantrum during physio, Darryl’s running late and I’m in the kitchen beating up on the cupboards again.
‘Sorry, but I need to go, Sue,’ Darryl warns, coming over for a kiss.
‘This is so frustrating. I hate the whole thing. And I hate that you’re not part of physio anymore.’ In New Zealand we shared the responsibility for it: I often did the morning and he did the evening. Now it feels like this other man is more involved in our kids’ care than my own husband.
‘Why does it matter if I’m involved with physio? Jean-Pierre does it better than me anyway.’
‘I don’t know why it bothers me … But it just does.’ Vague explanations do nothing to improve my standing with Darryl. To him, if there’s no rational reasoning for emotions, they’re not valid—a principle we vehemently, and regularly, disagree about. ‘It makes me feel more alone emotionally, like I’m carrying the whole burden without you.’
‘Just bec
ause I’m not doing physio anymore?’
I nod.
‘But that’s only one part of the whole picture and Jean-Pierre is doing it for us.’ Darryl is trying to reason with my emotions.
‘It’s just not the same. I still have to deal with the whole psychological side of physio and the battles over it—alone.’
It’s becoming clearer that I need help dealing with the emotional weight of this on-again-off-again dance with mortality, this sense that things could go steeply downhill any moment. Jean-Pierre, though caring and involved, cannot be expected to provide that support. He’s a professional who has had to learn how to sidestep the deeper long-term issues.
Both Darryl and I have also begun to realise that while Jean-Pierre’s presence helps by relieving us of the day-to-day responsibility for physio, it’s also disempowering. Even when we leave Paris for a holiday the hospital encourages us to ‘book a physio’ in the town where we’ll be staying, rather than doing it ourselves. We ignore the advice and forge on alone. If we can’t be independent with Aidan and Oliver’s physio, do we have any power over this illness? We are realising the importance of maintaining some control over our lives and the kids’ health. Delegating all responsibility to the doctors, nurses and physios means we lose motivation—and hope. The only slightly redeeming quality of CF is that there’s the potential to improve our sons’ lives through conscientious care and hard work. We can’t risk losing that motivation.
As we continue to read and learn, we find fascinating studies linking ‘non-genetic factors’ to quality of life and life expectancy. Some of these are fairly obvious: exposure to cigarette smoke in the home decreases lung function while regular cardiovascular exercise improves it. And the most common reasons patients and families don’t adhere to treatment regimens are because they don’t understand them or their importance. Adherence is probably even worse in situations like ours where patients and health professionals don’t share the same first language.
But some research findings surprise us. For example, young patients who have difficulty keeping on enough weight are significantly more likely to have a mother who is a successful ‘dieter’. We also read a study showing that 22% of the variance in height and weight changes in children with CF is due to family stress, family resources and family functioning. The way our family unit copes with life’s challenges may have a significant impact on our children’s wellbeing. It sure makes you think twice about bickering over responsibility for the dirty dishes.
At one point we begin to worry about the impact of Paris’ air pollution on the kids’ precious lungs. We’re anxious that studies may show people with CF living in large cities have worse outcomes because of prolonged exposure to air pollution. But it turns out that their life expectancy is generally longer than that of people living in rural areas. Why? Because of the proximity to excellent specialised centres. The quality of on-going clinical care received by patients is currently the key to fighting this disease. We ditch our worries about pollution and instead focus on our family relationships and the quality of our medical care.
***
Though Darryl doesn’t see as much of Jean-Pierre as I do, they develop an easy rapport. We grow to trust him and rely on him for advice. He corrects our French, recommends restaurants, suggests holiday destinations and helps us understand the medical system. And as the kids grow, the physio becomes more manageable. Aidan has moved past his crying and squawking phase, instead relying on conversation to divert Jean-Pierre from his task. With his language skills improving rapidly, Aidan is now able to stall effectively in French.
‘Jean-Pierre, did you know that I’m three years old?’
‘Yes, Aidan, I know. Let’s get started with physio now.’
‘One day I’ll turn four.’
‘Yes, Aidan.’
‘What will I be after I’m four?’
‘You’ll be five.’
‘Will I still be Aidan when I’m five?’
Although Jean-Pierre’s extremely good-natured about these things, the relationship with him is not always easy. He’s usually rushing and occasionally late. By now Aidan has started school at our local French primary school; children in France begin school at age three. If Jean-Pierre isn’t on time in the morning, we’re pushed to make it to school by the start of class at ten minutes past nine. The school principal is a sixty-year-old woman whose nose reaches about to my sternum. She often loiters outside the school entrance just as the bell sounds, pulling aside tardy parents. With intense eyes, fluttering hands and a well-practised lecture reciting the likely future failure of late children, it’s not a good start to the day.
Our apartment building has no public parking so Jean-Pierre parks on the footpath like everyone else in Paris. But after bollards are installed on our footpath, parking becomes a near impossibility for him and an annoying part of his daily visit. My life is complicated by two young children and a lingering case of postnatal memory loss so I occasionally forget our afternoon sessions and am not home when he arrives. When the kids are sick he comes eleven times per week and it feels like our life is ruled by physio appointments.
It’s too much for all of us.
Then one day Jean-Pierre takes an extraordinary step. He invites us for dinner. For an American, this is nothing—we’d invite the postman to dinner, and suggest he bring along the butcher, baker and candlestick maker. For a Frenchman, it’s significant. The French are social people, but normally this is limited to a close group of friends and family. It’s rare to invite ‘outsiders’, particularly poor French-speakers. One expatriate couple tell us that after living in France for five years they have never had an invitation to dinner except from other foreigners.
Then there’s the issue of Jean-Pierre being our physiotherapist. In just the few years since we began this intimate relationship with the healthcare system in New Zealand, we have already felt the chill of that invisible yet real barrier: professional distance. Health professionals need to give themselves space from the emotional ravages experienced by some of their patients; if they ‘walk the road’ too intimately with every patient they could face early burn-out. I understand that and have never pursued friendships with our doctors, nurses or physios. And yet … we have been so deeply moved by even small acts of humanity, of understanding and compassion by them: a ‘just checking in’ phone call, extra scripts to make our life easier, a mobile phone number in case there’s a problem. Now, a dinner invitation.
The invitation comes, in typical French fashion, a month in advance. He assures us repeatedly that it won’t be a formal affair—‘pas de cravate’. No ties. Jean-Pierre has invited one other couple, good friends of theirs. ‘Don’t worry, the wife is German and speaks English,’ he tells me when I express uncertainty about how my French will hold up for an entire evening.
It’s a dripping hot summer night when we arrive at his house. The two other guests are already on the terrace sipping champagne. The patio table is drowning in fresh seafood, pâté and savoury tarts, resembling a Bon Appétit magazine photo shoot. There’s not a chip-and-dip in sight. Darryl and I begin with a slice of a homemade terrine. I can no sooner create a dish like this than write a thesis on Descartes, but I’m pretty sure it’s not the kind of thing you whip up twenty minutes before the guests arrive.
The hors d’oeuvre conversation begins with light enough topics to allow us to maintain our French without taking our eyes, and hands, off the Bon Appétit table.
‘We live in Suresnes … She’s American and I’m a New Zealander … We have two boys … He’s an economist … We’re here with the OECD … Yes, we love living in France so far.’
But before we can finish our first glass of top-rate champagne the gears have changed, the French have moved on to meatier topics and we’re digging around for past participles, conditional perfects and unlearned vocabulary.
‘New Zealand has forged its own path politically, hasn’t it?’
Darryl nods in reply, and then looks
down. I can tell he’s madly trying to organise a proper response in French. Before he scrounges together a reply, the conversation continues.
‘As an economist, what do you think of the proposed thirty-five-hour work week?’ Darryl stares blankly at the questioner, then at me, as if begging for help. Why he thinks I’ll be able to lend a verb or two is unclear as he knows I’d struggle to answer the question intelligently in English. A few minutes later the spotlight’s on me.
‘How do Americans feel about the Kyoto Protocol? Why won’t Clinton sign it?’ I wish I could rant on about how I want him to sign it, along with the International Criminal Court and half a dozen other policies which are sensible and would improve my country’s standing overseas. But I’m worried I’ll end up saying the opposite. The French are keen to talk politics—and popular culture, music, literature—at dinner parties. But it’s excruciating in a not-yet-second language. Jean-Pierre’s friends wade on patiently with us, though for them it must be like trying to discuss Nietzsche with a toddler.
By the time we move inside to begin dinner the chatter has dropped down a few notches to more accessible topics. We’ve already eaten too much and I’m wishing I had given myself more expansion room by opting for a looser, less French skirt. The table is not exactly our definition of ‘informal’. Laid with the best china and crystal, including knife holders, three wine glasses per person and well-polished silver, it’s an intimidating sight. Jean-Pierre and his wife Karine hurry about in their average size Paris kitchen, about as big as an American walk-in closet.
Soon the appetiser arrives. Thick, smooth wedges of foie gras are carefully laid on the plates in front of us. Rich and filling, I spread a thin layer on my toast, pausing to enjoy the intensity of taste on my virginal taste buds. As I listen to the rapid-fire conversation and laughter, watching Jean-Pierre rib Darryl about rugby, I’m surprised to feel tears gathering in my eyes. I glance down, retreating from the conversation to collect myself. What’s going on? I am moved by who Jean-Pierre is becoming in our lives. This warm Frenchman, with his strong hands and sensitive heart, is now so committed to keeping Aidan and Oliver well. He knows them. He can pick when they’re poorly and he understands their routines, their quirks and their moods. And we know him, his strengths and his weaknesses. Our lives are totally enmeshed. Right or wrong, despite professional distance, how could we not have become friends?