by Susan Biggar
Thanks, thanks a lot.
‘Uh, hi,’ I say, waving Oliver’s tiny hand at this unfortunate man. I decide to acknowledge his bad luck right from the beginning, hoping it will jump-start the friendship. ‘Guess what? You get us all the way to San Francisco!’
Jumping up to let us scoot past, ‘Great!’ he says with surprising conviction.
There are twenty minutes until take-off and Oliver’s already grizzling. I try to breastfeed him but that doesn’t do the trick. Our new neighbour buries himself in The Economist, carefully ignoring exposed breasts in the vicinity. Eventually I decide that Oliver needs solid food. Reaching into my carry-on, I grab the first available jar of baby food: carrot. He demolishes the jar in about ten minutes, just in time for take-off.
Unfortunately, something’s not right in Oliver’s world. Whether it’s the rumble of the jets, the steep angle of take-off or the expiry date on the carrot jar, the entire bright orange meal comes back. Oliver and I receive a heavy covering; Aidan and our new companion get a light sprinkling.
‘Oh no, I’m so sorry.’ I cringe as the poor man tries to dust the orange spots off of his starched white shirt. He must be an absolute novice with vomit if he thinks it will dust off.
‘Don’t worry, it doesn’t matter,’ he responds with sincerity. Pulling out a clean, pressed handkerchief, he begins wiping vomit off Oliver’s chest. With this I put him on my friend-forlife list. By now the stewardesses are unbuckling. My friend waves his arms madly to flag down the closest one for help.
‘This little boy has been sick, could you please help us?’ Us? I’m thinking of leaving Darryl to marry this man.
The steward takes one glance at our row—which looks like someone murdered a large orange—before shaking her head and invoking Convenient Rule #29: ‘I’m sorry but airline regulations prohibit us from handling vomit. I will get you some towels.’
Over the next nine hours my neighbour takes Aidan to the toilet four times while Oliver is asleep on my chest. He uses his tiny fold-down table to balance both his own dinner (and breakfast) tray and mine because I can’t even open mine with Oliver scrunched on my lap. He reads books to Aidan when I am trying to settle Oliver. And he politely ignores the smell of vomit on my shirt because as an efficient traveller I only brought a change of clothes for Oliver, not me.
Waving our friend goodbye as we leave the plane in San Francisco, I’m struck by the surprising nature of life. He was certainly not the angel I expected.
***
Coming to San Francisco is just what we need. After nearly two years in France our daily life continues to require effort. Despite the increasing ease of the language and daily social encounters, we remain acutely aware of our foreignness, a stigma which can destroy one’s confidence and stability. And we are worn-down by the relentless nature of this illness, especially this first year for Oliver. Every month has brought a new worry.
We spend a week happily immersed in the familiarity of California, staying at my parents’ house in Marin County, just north of San Francisco. It’s all so easy and comfortable: family, language, personal interactions; life there feels more effortless than we ever remember.
‘I don’t think these shopping trolleys were always this big at Safeway,’ I say to my sister, Ann.
‘First of all, we call them shopping carts here, remember? And second, yes, they were always that big.’ She is not about to let me off the hook for forgetting that the livin’ really is easy in California.
A few minutes later I rush over to her in excitement, my enormous cart sailing through the aisles. ‘Ann, there are four frozen food aisles here. It’s unbelievable! There’s nearly one entire aisle just devoted to prepared meals. I’m sure things have changed since I was here.’ She merely rolls her eyes at me. But it’s true. Though I’m not a dedicated fan of frozen food, meals here are easy to prepare, parking is available, the sun shines every day, nobody seems to ever go to work and people regularly smile at and speak to strangers. Wondrous!
Our second week is to be spent at Wright’s Lake with another sister, Clare, and her family. The tiny lake, which sits high in the Sierra Mountains, is unforgettable at dusk with the fish jumping for insects and the mountains mirrored in the still water. Plus it has a unique place in my own family history. I have passed weeks there over many summers, sleeping on the deck of our friends’ cabin and staring up at thousands of stars, enchanted by the rare silence of the forest. The lake was where I first drank coffee, learned to windsurf and was inadvertently tipped out of the sailboat by Darryl. We spent our honeymoon climbing, canoeing and cavorting there nearly a decade earlier. The lake has become one of those places in our life, places with enormous meaning far beyond the beauty or physical pleasure they bestow.
The day before our departure we take Oliver to be seen at a CF centre in San Francisco. Whether it’s due to the allure of the lake or our exhaustion, I don’t know, but neither Darryl nor I predict the outcome of the appointment. We are just looking for reassurance about his continuing cough.
‘I’m sorry Mr & Mrs Biggar but Oliver needs to be admitted.’
‘Really? Are you sure?’ That’s the wrong question to ask. This is someone who is sure; he knows this condition and knows it inside and out. Gerd Cropp is a tall, slightly stooped man who’s probably in his mid-sixties. He has a head of china-white hair, a Germanic accent, a very hectic schedule and all the time in the world for us.
‘Why don’t we all sit down again? Look, I know it’s not very convenient, being here on vacation and everything, but Oliver’s not in good shape. He has a fever, he’s coughing and his chest X-ray is not good.’
Darryl and I catch each other’s eye when he says this. We know he’s right but our disappointment is palpable. I speak first, forcing out the words.
‘Of course, of course … he needs to get better,’ are the words I speak but inside I’m thinking that we just want to have our family all together for once without the hospital barging in on our lives.
‘When do you think he should come in?’ Darryl asks.
‘Tomorrow morning.’
We nod in reply. The more we discuss it the more obvious it is that this is what Oliver needs. I can feel myself letting go of the lake, finger by finger.
He continues. ‘The thing about keeping on top of this condition is that timing is everything. We can’t wait until the bugs settle in and take up residence in his lungs. We need to get rid of them with powerful antibiotics before they become permanent.’
Everything he’s saying is true; we have heard it and read it all many times. In fact, it has been our script. But this time we needed to be reminded of it. We needed someone else to drill it back into us.
Dr Cropp is loaded with fascinating information. He tells us about the Nordic sailor with CF who lived into his seventies at a time when most others weren’t making it into their twenties. Why?
‘We don’t know exactly, but we think it had to do with his exposure to the sea and saltwater. I mean it’s not that he wasn’t sick at all—he was coughing up blood periodically—but managed to keep his lungs going anyway.’
We discuss differences in care, something Darryl and I are seeing every time we travel. How can there be so many different ways to manage one condition? Isn’t one of them better than the others? As we leave his office, he encourages us not to accept the status quo.
‘During my career I have seen enormous changes in quality of care. Most of them were pushed through by parents and adults living with CF. Remember, you have the power to make a real difference.’
Right now I barely have the energy to brush my hair in the morning much less try to change a health system, but his words are inspiring nonetheless. We head back across the bridge to Marin County.
Once I have woken up to reality, I feel a strong need to help Oliver get better. We decide that Darryl and Aidan will go ahead to Wright’s Lake with the others. It’s too important for Aidan who has been anticipating this time with his cousins
for weeks. That evening when we call the health insurance company to explain the situation, our naivety about insurance becomes evident.
‘So the hospital needs you to fax through some kind of approval form tonight—can you do that?’ Darryl asks our insurer.
‘Of course, Mr Biggar. But I am just wondering if you have considered treating Oliver at home through our excellent Hospital in the Home program?’
‘Uh, no, I’m not really sure what that is actually.’
‘I’m glad you asked. With Hospital in the Home you can have the same excellent medical care but in the comfort of your own home. We can get a nurse to bring the antibiotics to Oliver every day.’
‘He needs to have IV antibiotics.’
‘That is not a problem at all, Mr Biggar. Our nurses do IVs too.’
‘I think you would need to speak to the doctor because Oliver’s quite unwell: he has a bad chest infection and a fever. Also, he’s only ten months old. Somehow I don’t think the team will agree to it. Besides, we’re actually on holiday now so we don’t even really have a home here. I don’t think we would consider it. Thanks anyway.’
‘More and more doctors are happy with it now because they understand the cost savings that are involved. You might be surprised by Oliver’s doctor’s response.’
Dr Cropp flatly turns down the insurance company’s suggestion, stating that Oliver is too sick and too young for it. Despite Darryl rejecting the offer and the medical team’s stated disapproval, the insurers call us frequently during Oliver’s two weeks in the hospital, hoping we will change our minds.
The next morning as the others are preparing to depart for the lake, my friend Suzi pulls up to my parents’ home. She will drive Oliver and me to San Francisco, supporting us through the admission. I stare blankly out the car window as we drive back across the Golden Gate Bridge. The bridge and city are shrouded in the thick summer fog which hangs heavily everywhere, no building or tree untouched by its damp presence. It seems an appropriate metaphor for us this year, a reminder that there’s nowhere to hide, no country we can flee to where it won’t follow. It’s pretty obvious that running from this is never going to work. We need to learn to live happily with its constant presence—sometimes negligible and other times overbearing.
It’s culture shock all over again at the hospital. The nurses are amazingly effervescent and friendly; I have five new best friends by lunch. They wear clip-on teddy bears on their stethoscopes and Bear in the big blue house pins on their shirt collars. When my tears seep out they offer full-on hugs and tissues, even the occasional shoulder rub. Their warmth and kindness is comforting if unexpected. Darryl phones nightly from a canoe positioned dead-centre in the lake, the only spot with cell phone reception, to see how things are going.
‘Yeah, it’s okay. The nurses are really kind and I have a chair that lies flat for sleeping. In fact, every single room has one—I guess they really want the parents to stay. What a change, huh?’
‘That’s amazing. Every room set up for a parent to stay? How is Oliver coping?’
‘He’s fine as long as I’m with him. In fact, they have some great toys on the ward and he loves the playroom. Suzi has been here a lot and Mom and Dad have visited. We’re doing okay. How’s Aidan?’
‘In a state of bliss. The kids play all day long—collecting things in the forest, creating games with sticks, swimming. We did a hike to one of the higher lakes today which he loved. But he’s missing you guys also. When I told him I was driving down from the mountains to swap places with you tomorrow he said “I want to go and see Oliver, Daddy.”’
‘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, go
ing 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.