The Upside of Down (34 page)

‘I have never heard of something like this. So Oliver has an illness?'

‘Both he and Aidan have the same illness: cystic fibrosis. I think it's
La fibrosis quística
in Spanish. It's a chronic lung condition.'

The word ‘lung' appears to hit Jamie across the face like a slap. He is silent.

‘Uh, didn't the trekking company even mention this to you?' He shakes his head and picks up the pace as his oh-so-mellow attitude begins to evaporate. I can't believe they didn't even warn him. ‘They're generally very healthy though and do a lot of exercise, so they'll probably be fine.' It may be too late for reassurances. I wanted him to know, not panic.

‘I think I will just hike with the two boys for a while and see how they're managing with the altitude and everything.' He shifts gear again and I feel like I'm sucking air through a straw keeping up; I drop back to Ellis and Darryl.

About twenty minutes later, we come around a bend and find Jamie, Aidan and Oliver stopped by the edge of the path, drinking from their water bottles.

‘Hello!' Jamie greets us. ‘Why don't you stop and have a drink with us. I want to talk to all of you.'

We pull our packs off. I grab a bottle and tell myself,
we're not turning back
.

‘This is a tough hike. We will climb many hills, gain and drop a lot of altitude and walk hours each day. To do this we are going to have to stick together, help each other and work hard. Okay?'

We nod our heads enthusiastically. Of course it's okay. This is what we're here for, it's our family's Everest and Jamie is our Sir Edmund. After his pep talk we'd follow him anywhere. As the others head off, Jamie takes me aside.

‘Aidan and Oliver will be fine; they're really fit. I'm not worried.' I wonder if he's convincing himself as much as me, but his confidence is heartening.

After several hours of hiking, the landscape is changing. The Urubamba River is now far below us, a mute rush of water spilling over boulders. The most unexpected treat for me is the snow-covered mountains creeping across the horizon on every side. The trail passes high above the first of many Inca ruins,
Patallaqta,
a site which was once used for religious purposes and crop cultivation. The clean terraces look months old rather than a couple of thousand years. Oliver listens intently to Jamie's explanations. As we prepare to leave, he turns to me, ‘Mum, you know how I wondered for a while if I had picked the right wish? This is totally amazing, and I'm sure it was the best wish for me.'

We pass through gatherings of small stone houses—a stretch to call them a village—where locals sell nuts and cold drinks. Settlements only exist on this first piece of the trail and pack animals are not allowed beyond them because of potential damage to the track.

As we head away from a group of houses we see a few porters approaching us with several loaded mules. They're the first people we have met going in the opposite direction; the Inca Trail is normally a one-way street. Sitting on one of the mules is a Caucasian man in his mid-forties. His skin is chalky, his eyes empty. From his nose hang two bloody cloths, one stuffed up each nostril. Instinctively I look at Ellis, who's right behind me, recalling his gushing nose two days earlier.
Ellis is fine. Ellis is fine
.

After a full morning of hiking, we are more than ready to sit on a rock by the river and wolf down a sandwich. But that is not how things are done here. Jamie directs us over a wooden bridge spanning a mountain stream and on towards two blue tents erected in a clearing. Unbelievably, these are for us. The porters have set up a ‘dining tent', a ‘cooking tent' and prepared a three-course hot lunch. The kids hesitate, so unaccustomed to this luxury. But within a moment they are loading up their plates, delighted the peanut butter sandwiches have been left back in Australia.

***

‘Susan. Darryl. It's five o'clock. Time to wake up.' Since when do the words ‘five o'clock' and ‘wake up' fit together? From outside our tent, Jamie continues. ‘There's a bowl of warm water here to wash and two cups of coca tea.' I unzip my bag and crawl awkwardly towards the mugs, already reliant on the coca tea to deal with the early morning altitude discomfort. I massage my forehead, to ease the throbbing and make certain there really is no drill bit digging into my frontal lobe.

This second day of hiking is meant to be the toughest. We need to cross over
Warmi Wañusqa
(‘Dead Woman's Pass'), which at 4200m is the highest point in the trail. I'm told that its name comes from the mountain's resemblance to a sleeping woman. As the only woman in our group, it's hard not to feel intimidated by this—why couldn't they have called it
Sleeping
Woman's Pass? Besides getting over the pass, apparently the course today will rise and fall, like a roller-coaster. Not easy at the best of times, but at altitudes over 4000 metres, I may not be on my best behaviour.

An hour after emerging from our tents, the cold still leaves a raw ache in my fingers. It's July, winter in Peru. We're less likely to face rain—and thus far it has been dry with flawless skies—but the temperature dropped to about -5C overnight and is not warming quickly this morning.

All five of us have relatively new boots, but apart from that we are each wearing a borrowed collection of long underwear, leggings, old hiking shorts and layers of wool jumpers topped with light rain jackets and alpaca hats. We establish a pattern of stripping as we climb followed by immediate re-layering when we stop. The obvious solution would be not to stop. But climbing and breathing at the same time is becoming tough. After about four hours of climbing, Jamie points out Dead Woman's Pass up the hill, ‘It's just there—at the top of the path.'

Just there. Take eight steps, stop for a breath. Seven steps, another breath. Oliver and Aidan are managing better than the rest of us. They are focused and determined, yes, but their lungs must be fine. I pause for a moment.
They are okay. Thank you
. They are keen to get to the top and Jamie waves them on as he hangs back. Six steps, a breath.

Ellis is leaning over, moaning.

‘Ellis, give me your pack.' Jamie is a god. I look over at Darryl; his face is taut and strained, he's concentrating on every step.

‘You walk in front of me, Ellis and just stop when you need to. You'll make it.' I think Darryl and I could no more give our young son encouragement and carry his backpack right now than skip to the top of this mountain singing ‘The hills are alive …'

Eventually, after another thirty minutes of what feels like octogenarian shuffling, we arrive. It is a huge accomplishment. We hug, take photos. The kids want to toss snowballs and pose for a full photo shoot but Darryl is struggling with the altitude and I find the cold in this exposed place intolerable. After a few minutes, we persuade them to keep moving as the trail plunges down two kilometres of steep steps. Lunch will be served at the bottom of this ravine, with a steep climb up the other side awaiting us after we eat. We're halfway up the post-lunch climb when a friendly voice calls out.

‘Hello! How're you going?' There are two middle-aged women stopped ahead of us. They appear to be finishing a rest break as we approach.

‘Fine. Yeah, it's amazing, isn't it?' Darryl answers.

‘Oh, we're loving it, but it's tough. How old are your kids?'

‘They're 15, 12 and 8.'

‘He's only eight?' one of the women asks, looking at Ellis. ‘I can't believe it. I honestly can't imagine an eight-year-old doing this hike.'

Their comments make me reflect on Ellis. He never hesitated when we first suggested this trip and explained how challenging it might be, nor did he complain on our training hikes. I know he was determined not to be the one to keep us from getting to Machu Picchu. That's a lot for an eight-yearold. I haven't forgotten our counsellor Chris and his concerns about the weight of living with illness. It's still there for him, for all of us. But today is what we have, it's all that's certain. Living this way is what Ellis knows.

That night—after ten hours of hiking and an unforgettable experience exploring a well-preserved ruin completely on our own—we camp with a view of the mountains that makes me weep.

***

When we wake on the third day, Darryl and I are feeling more jubilant and relaxed, optimistic that we will make it to Machu Picchu. We should be there tomorrow. There's no sign of any unexpected coughing or shortness of breath. No wheezing or sudden fevers. No intestinal blockages. After years of visiting a new hospital on nearly every holiday, in every country, could this trip be different? We haven't seen—or needed—a doctor. We haven't even dipped into our just-in-case medications. The relief is enormous and the fear retreating.

Even the deep tiredness from jetlag and altitude that seeped through our bodies a few days ago has dissipated. The trail, though at times still demanding, is manageable. We take longer to explore the ruins, eat meals, and absorb the views. By the afternoon of the third day we have dropped altitude, there is a softness in the air and the environment resembles a jungle. When we stop in the late afternoon to explore some extensive ruins before pitching our tents, our goal is just a few hours further down the trail. We are nearly there.

Jamie wakes us at 3:30am. It's the last morning and we hope to be at the Sun Gate, an important archaeological construction of steps sitting high above Machu Picchu, by sunrise. We pack, eat breakfast and farewell the porters who will take an early train home. The checkpoint for this final section of trail doesn't open until 5am. Eventually we're let through and we begin walking. The path is easy, all flat or downhill. The kids are excited and chatty.

When we're nearly at the Sun Gate I recall that it's July 6
^th
: my birthday and our twentieth wedding anniversary. Although we had realised we would be here for these celebrations, we didn't plan it this way. But little of our life has been planned. We've just tried to do the best with it, regardless of where it took us.

Today, I know we have made it. Our ambition is about to be achieved. It was Oliver's wish, his dream, but it has become a goal shared by the family. It is ours together. As we arrive at the Sun Gate, the sun is still hidden but the sky is beckoning. Below us, in the stillness, stands the great Machu Picchu.

Acknowledgements

To Darryl for our life together. And for your brutally honest feedback which improves my work, if risking our equilibrium.

To Aidan, Oliver and Ellis for allowing me to write publicly about our lives, and for grabbing life with both hands.

To my parents, Jerry and Jane Burroni, and my sisters, Ann Goheen and Clare Ciafrei, for loving the book from the start and never giving up on it. Or on me, despite how rarely I pick up the phone …

To Barry Scott at Transit Lounge. For taking a risk and making the whole process such a pleasure.

To RMIT Professional Writing and Editing teacher Di Websdale-Morrissey, for her constant enthusiasm and confidence in this project. To Di's Non-fiction Project class, whose honest and patient feedback first moved this from scattered stories to something remotely publishable.

To Carolyn Ingvarson, Dr Kate Richards and Helen Rushford, who emerged from Di's class as friends and stuck with me and this work over countless dinners, wines and workshopping sessions.

To Adair Lara for her expert writing advice and spirited encouragement.

To other faithful friends who read, gave feedback or just consciously cared for our family through our many challenging times – Suzi Dillon, Talitha Fraser, Marie-France Grubb, Karen Bolton, Linda Doblin, Deb Gauck, Madeleine Johnson, Kristi Smith, Sophie Touren, Liz Newton and the rest of the fabulous five from Liquid.

To Dr Cath Crock – for sharing this path toward a goal we both believe will happen – and to the board and supporters of the Australian Institute for Patient and Family Centred Care.

To Dr Bob Williamson who has spent more than a decade seeding me with subversive ideas for improving healthcare.

To my colleagues at Health Issues Centre for their total commitment to transforming the health system to give patients and families a stronger voice.

To Dr Sarath Ranganathan for thoughtful, vigilant medical care and understanding the meaning of partnership with us – even if you did talk too much about cricket with Aidan and Oliver. And to Dr Jo Harrison for getting us through some of our scariest moments with wisdom and poise, while managing to look after me at the same time.

To Jean-Pierre Philippe for giving so much beyond what we ever could have expected.

To Dr David Werry for skilfully and sensitively walking me through the first year of living with CF and modelling patient centred care long before I had even heard of it.

To ‘the regulars' at Olmecs – my friends whose lives have also been impacted by CF. For the laughter and sadness, and all you have taught me about courage and grace in the face of this nasty illness.

Finally, to the literally hundreds of people—friends, family, friends of friends—who have taken part in walks (even 65km walks), runs, Balls, or generously donated to help us raise thousands of dollars for CF research. Because of you, the future will be better for people like Aidan and Oliver.