by Susan Biggar
I continue. ‘Look, I know it sounds crazy, but it’s what he wants and we think it’s a fantastic wish. Part of it is his believing that he can do something this tough—it’s a great physical goal for the whole family. The other thing is that the hike goes past a number of stunning archaeological ruins which he doesn’t want to miss.’ Somehow this fundamental detail had managed to slip through our many conversations, probably because I always assumed we would hike and she never contemplated that as a possibility.
After another moment’s silence, Georgina begins listing some quite reasonable obstacles to our plan. ‘We only got approval from the board and the insurers for him to take the train, not to hike there. Then we have the issue of the doctor again—.’
‘That’s okay,’ I interrupt her. ‘We don’t mind waiting if you’re willing to go back to them again. I’m really sorry, but since we have already waited this long, we can wait a bit longer to get it right for him.’
‘I’ll see what they say, but I can’t promise anything.’
***
Meanwhile, the monthly CF support group that we started in a cafe several years earlier continues to meet. We all watch helplessly as our friend Jon’s health declines, first forcing him to lower his activity level and quit the soccer team he loves, then stopping work, finally attending our get-togethers with an oxygen tank wheeling behind him. His partner Jane is ever-faithful and hugely in love with him, though undone with worry. In the midst of this trying period, Jon proposes to Jane. Their wedding is a poignant celebration of love and commitment and the first time I’ve ever known ‘in sickness and in health’ to be more than just an optimistic promise.
The day after they wed Jon joins the queue for a lung transplant. I’m impressed by Jane’s strength and interested in how she copes with being thrown straight into the fire of full-on illness. One day over lunch I ask her about it.
‘In the beginning, when you had just started the relationship with Jon, did you think “What am I doing in this? He has got a really serious illness”?’
‘The first Christmas after I met him—before we were even dating—I went home and told my mum and sister that I had met someone. But then I said something like “But I would never get into a relationship with him because he might die. Why would I put myself through something like that?”’
‘Really? So what changed your mind?’
‘Both my mum and sister said right away “I can’t believe you’re saying that, Jane. It doesn’t mean you couldn’t have a great relationship with him—and a great life together. Why are you thinking like that?” From that moment I began to look at it differently; it really changed my view about the potential for a relationship.’
‘Have you ever doubted it since then?’ I’m embarrassed to ask the question, but knowing what a living hell they have been through the past few years a little doubt along the way wouldn’t be surprising.
‘You know, I haven’t. To me, CF was always part of who Jon was. So once I chose to be in a relationship with him, then I chose to be in a relationship with someone with CF. We’d just deal with whatever came along.’
Jon had been told that, due to his particular blood type and physical size, his wait for suitable lungs might not be long. Thankfully it isn’t. Eleven short weeks after joining the transplant list, our group cheers as he receives a double-lung transplant, not only dropping the oxygen tank but swimming the first leg of a triathlon just months later.
While the support group continues to share tips and personal stories, we also begin comparing notes on our healthcare experiences—what works and what doesn’t, what will probably never change and what we might just begin to influence. Angela, whose teenage son is cared for at our hospital, becomes an absolute dog with a bone on the issue of physiotherapy support for patients who are having IV treatments at home. She makes phone calls, sends emails and has multiple corridor conversations, refusing to let the problem out of her sight. When a part-time designated physio is finally hired it sends out waves of encouragement to others, echoing that change is always possible.
***
I find that some aspects of ageing hit completely without warning. Like the noticeable gravitational pull on various body parts and the disintegration of your teeth. Or the fact that just as you’re vainly trying to mentally adjust to this crumbling body, if you have children they will likely be entering that murky space I call teenageitude. Once there, they’ll challenge you in all sorts of innovative ways. For one, they’ll want more freedom. Most of the time, you’ll want to give them this freedom.
Most of the time.
The problem with my adolescents is that they don’t just want to have freedom to choose between Asics or Nike, hockey or soccer, Apple or Android. No, they also want to take control of their health. As in, ‘I don’t think I’ll have time to do my nebulisers this month.’ Or ‘I’m too busy at school to eat lunch this semester.’
This is too much for me.
Yes, Darryl and I have always wanted them to be in charge of keeping themselves well, preparing them for that the way other parents prep their kids to take over the family metalworking business. When they are ready. Really ready. But how do we hand over the keys to someone who is possibly not yet a safe pair of hands? After all, we’re the ones who have read the medical textbooks, studied websites and attended the conferences. We have also paid close attention during years of incalculable medical appointments, rather than burying our face in a Harry Potter. We understand this illness, we know the kids’ medical history better than we know our own and we care passionately about the outcome.
My friends tell me that their adolescents are begging for independence and the freedom to make their own decisions, so ours are perfectly normal in that regard. All the books on raising successful teens seem to say ‘let them go, let them fail, it’s the only way they’ll learn.’ This may work when it comes to choosing to do woodwork over calculus or even when dating the clingy and paranoid 16-year-old girl from down the street. But what about when the health stakes are high? To me, it’s a dicey line between encouraging their responsibility and my own parental irresponsibility.
One thing that probably appeals to Aidan and Oliver about independence is the absence of my nagging, for years a constant clanging in their ears akin to chronic tinnitus. But this is a challenge for me. The reality is that nagging seems to be cemented into my job description. Now, it’s not as though I like this or haven’t attempted to give it up; I’m continually coming up with schemes to increase their responsibility—and decrease my own.
One Saturday morning I say to both of them, ‘Okay, I’m not going to remind you about your enzymes today. At all. Not even once. DID YOU HEAR ME?’ Yet by ten o’clock they have each consumed about half a kilo of bacon without a single enzyme passing between their lips. From behind the newspaper I casually slide the tablets across the table with the ridiculous hope that this will trigger their memory without revealing my own failure. Five minutes later neither of them has so much as sniffed the bottle in front of them and I end up growling, ‘Take your enzymes NOW!’ before storming out of the room.
Lately I have been trying a new tack. After fourteen years of carrying enzymes in my handbag, stashing them in the car and practically sewing spares into my underpants to make sure we were never caught empty-handed, I’m going cold turkey.
‘I am not carrying them anymore,’ I tell them. ‘If you don’t bring enzymes when we’re out, you don’t eat when we’re out.’
At the start, this is a debacle and we find ourselves frequently bickering in the car about whose fault it is that the precious pills have been left at home on the kitchen table. Aidan and Oliver moan and roll around the back seat complaining of hunger pains while I drive wordless past Subway, home to Aidan’s favourite twelve inch meatball sandwich worth about fifty much-needed grams of fat. But in time—just in time, if you ask me—the old penny starts to descend in their adolescent brains and they begin stockpiling enzymes in the glove box, the s
chool bags, their sports bags. Slowly, the roles are shifting.
One of our recent innovations is that Aidan, and soon Oliver, meets alone with Sarath at clinic appointments before inviting us in. The whole deal at clinic takes much longer and from what I hear there is a lot more discussion about cricket and the English Premier League than lungs and weight gain. But what they talk about is their business and not mine to worry about.
Most of the time it still seems like looking after their health is about as much of a priority for Aidan and Oliver as looking after my toenails is for me, ignoring them until I’m practically tripping down the hall. Like most teenagers, they just aren’t focused on the long-term benefits of taking care of themselves today. Aidan’s mostly thinking about whether his first car will be a Ford Fiesta or a Mini Cooper (though at the rate he’s saving money he should be keeping an eye on the second-hand scooter market). And Oliver’s really only interested in producing his first feature-length film. Or at least that’s how it seems to me.
But maybe I’m not giving them full credit.
One day Aidan and I are in the car on the way to his swimming training when we stop at a red light. A group of teenagers are loitering in front of a school; several of them are smoking. I can’t resist speaking up.
‘Aidan, you know that smoking would be a really terrible thing for you to do for your lungs.’
He slowly turns his head towards me with a look of disgusted incredulity that only teenagers can achieve.
‘Mum, what do you think I am? Stupid or something?’
That makes me feel so much better.
***
With no inpatient visits required, the hospital slowly fades from our lives like a distant town shrinking in the rear-view mirror. At least for the time being. Meanwhile, Aidan and Oliver are spurred on to the pursuit of more sporting activity. Thankfully both of them enjoy sports. But more than that, I think they now understand that exercise—serious, heavy-duty cardiovascular exercise—needs to be built into their lives, every day. So Aidan joins a swimming squad, building up his stamina until he’s regularly swimming longer distances in a month than I could manage in a year. During summers at the beach they take up surf lifesaving and nippers. In Year 9, Aidan advances to the state championships in four sports: swimming, cross-country, track and surf lifesaving. He also joins a competitive running club coached by Anthony de Castella, the brother of the Australian former world champion marathon runner, Rob. At 14, Aidan is the youngest in the club by nearly a decade, but he is welcomed immediately. The group trains together four times a week and from the first week Aidan becomes obsessive about never missing training. Soon he’s running seven days, and over 50km, a week.
Oliver wins his school cross-country race and advances to the district and then the zone. He also develops into an excellent hockey player. With growing success, their confidence blooms. In fact, their running achievements lead to some interesting comments at school. One day another parent at Oliver’s primary school, who knows the boys have CF, approaches me.
‘Hey Susan, I heard Oliver did great at the cross-country.’
‘Yeah, he did. I think he was really pleased.’
‘Has he done a lot of training for it?’
‘He does a lot of sport and exercise, plus we’ve been running some as a family, so I guess that all counts as training. Why?’
‘Well, I totally cracked up the other day when my son told me about Oliver’s running. He said, “Mum, I heard that he and Aidan have some kind of medical condition that makes them run faster.”’
19
WISHING
It’s late June 2011, a drizzly and cold Monday morning. The kids are at school, Darryl is at work and we leave for Peru in six days.
Oliver’s wish to go to Machu Picchu was approved several months ago—giving us time to get proper gear, be vaccinated, sort out medications and do some hiking training. I can hear the rain falling as I pick a path through the living room, past half-filled boxes and stacks of folded clothes. The reality of what needs to happen before we go is sinking in, like a brick. Somehow Darryl and I continue to attract complication into our lives.
We started renovating our creaky old house in March. Built in the late 1880s, it was bought in the 1960s by Greek immigrants who tried hard to transform it from a noble old Victorian into something resembling the Parthenon; we are attempting to reverse the process. Our builder tore out the toilet a few months ago and we have been nomads since. Our third move is coming up on Saturday, the day before we are due to leave. Aidan will be at camp all week, returning on the Friday night; Darryl will be in Sydney at a conference until Saturday. We have booked a night at the airport hotel on Saturday night as our flight departs at six on Sunday morning.
By the time we’re checking in to the hotel on Saturday evening, it no longer matters that I have barely slept for three nights or that every one of our four flights has been cancelled and rerouted due to the enormous ash cloud circulating the planet from Chile’s Puyehue volcano. I am simply relieved. After all the chaos, the hotel room is like an oasis of calm as I enter it, clean and uncluttered; the perfect bed swallows me up as I flop onto it. Getting to this point—working for the wish that Oliver really wanted, convincing Make-A-Wish and Sarath to trust us, keeping everyone well enough to go—has been a lengthy road. And I wonder if there’s an element of this road that, for me, has represented our whole CF journey, made me determined to face the obstacles and uncertainty and never stop believing.
‘Come on, mum,’ Oliver calls out, interrupting my theorising, ‘get into your bathers—we’re going to the pool!’
We spend a luxurious night in the hotel pool and sauna. Despite the impending who-knows-what, sleep falls upon me easily.
***
The trip from Melbourne to Cusco, Peru takes 42 hours. Because of the Chilean volcano, instead of flying via Los Angeles, ironically, we’re rerouted through Chile. Cusco, with its population of about 350,000, sits at 3400m above sea level. It was the capital of the Inca Empire and is now a major tourist destination in Peru. As we come in to land, Cusco’s runway appears like a thin belt resting between the hills on either side.
Our hotel, like much of the city, is hidden behind an imposing wall. We step through a light blue wooden door which appears to be cut into the wall itself. Once inside, we are in a lush green courtyard. Above it, a veranda wraps around the first floor with the hotel rooms, doors made of hand-carved wood, leading from it. We drop our bags and sit at a table as several young male waiters approach with trays of tea cups.
‘Gracias, pero que es?’ Thanks, but what is it? I ask—already pushing the limits of my Spanish.
‘Coca tea,’ one of the men answers.
‘Ha! We’ve only been here five minutes and already we’re having cocaine tea!’ Aidan and Oliver are giggling while Ellis examines the cup suspiciously. We have heard about coca tea when we were reading up on the Inca Trail. It is made with leaves from the coca plant which is native to South America.
‘It’s not cocaine tea, Aidan,’ I snap, taking the bait.
‘Basically it is, mum. It comes from the same plant.’
‘Seriously?’ Ellis asks, picking up his cup and swirling it gently.
‘Cocaine is chemically produced. And I think there’s a lot less coca in the tea than in cocaine,’ Darryl adds.
‘Why are they serving it to us in a hotel if it’s drugs?’ Ellis is already thinking of the stories he will be able to tell back at school. This is not going to help my reputation among the school mums.
‘It’s not a drug! It’s just related to one, Ellis. They say it’s supposed to help with the altitude sickness and headaches for people like us who’ve just gained 3400m.’ Ripping the little white mug out of his hands at this point is going to cause a scene that neither our innkeeper nor I want to witness, so I try the opposite approach. ‘Taste it.’
Ellis lifts the cup slowly to his lips, sips a teaspoonful before dropping the mug to the table. �
�Yuck! That is terrible tea.’ And that’s the end of that for him. Prone to headaches, I already feel a tight throbbing in my forehead and with one gulp empty my cup.
A few minutes later our bags are taken upstairs and we’re given our keys and directed towards the room. As usual, Aidan races up first, but calls down from the top of the flight of stairs.
‘Mum, this is ridiculous. I am totally out of breath just from climbing that one staircase. How are we going to hike the whole Inca Trail?’
Aidan’s right. He’s huffing and puffing—and he regularly runs 50km a week. But the altitude is fierce. On top of my pinching head, I have a down-to-the-bones exhaustion because we’re also fighting lack of sleep and jet lag. It’s hard to know which will be our biggest enemy.
We decide to go explore Cusco. We have to get our bodies on local time and staying within 100 metres of a bed would be a problem for all of us. We buy some traditional Peruvian wool hats—chullos—made from alpaca, with ear flaps dangling past the chin. Then we visit the main city square—the Plaza de Armas—which is teeming with activity. We try our best to say no to the persistent vendors and take silly photos of pigeons sitting on Darryl’s chullo (on his head) as he feeds them.
Ellis, who has been moaning and generously sharing his misery since we left the hotel, eventually plops down on the ground, rolls over on his side and refuses to budge, like a broken-down truck.
And that’s when the bleeding starts. It progresses quickly from a drip to a flood. At home, at sea level, he gets nose bleeds so regularly that the women in the school office have an entire first aid protocol worked out for him. If he has unleashed a torrent here, how will he cope at even higher altitudes on the trail? With the dry air, nose bleeds can be more common in the mountains; for someone like Ellis, ‘more common’ could mean ‘constant’. Darryl gives me an ‘oh no’ look as we apply tissues and cuddles and bundle him back to the hotel.