by Lucy Palmer
Many years later I sorted through boxes of photographs of these peaceful days: Julian and George flying a paper plane; Julian tickling Meg’s chin with a piece of long grass; Charlotte sitting on his lap with a commanding smile.
Even though these images resonate, there are so many empty rooms in my memory of this time. I’m confused as to why this particular period of my life, more than any other, is now so obscure. It was as though all those days had simply melted together, and become indistinct and unrecognisable.
•••
Cracks in our apparently stable world began to develop the following year. They began as small fissures: an irritating cough, strange aches and pains, unexplained tiredness.
I believe we both had a sense of what might be coming as we drove up to Sydney. Julian had recently undergone more blood tests – today was the day of the results. Living with such uncertainty was hard to manage as I found myself oscillating between occasional despair and giddy hope. Julian was far more philosophical, at least outwardly.
The news was bad – the bone marrow transplant had effectively failed. It had been our best hope; in fact, our only hope.
It appeared that there were a few remaining options – all unpalatable and all incapable of permanently halting the progress of the myeloma. The best that any additional treatment could achieve would be to hold off the illness, but there was no way of knowing for how long. More chemotherapy was inevitable but Julian could also try thalidomide, the controversial anti-nausea medication that had caused so many birth defects in the late 1950s.
‘It will probably make you quite tired and you might get some nerve damage,’ the doctor told us. ‘But it can be quite effective and could be worth a go.’
The proposed treatments would not have the impact that the transplant had promised, he warned us. Their effectiveness would now be measured in months, not years.
We walked out into a tired, grey day, stepping out, once again, to an uncertain future.
•••
Julian and I had often gone to church in Port Moresby, largely because we had friends who went and because the services, with their sea of warm embracing smiles, were such a heartening contrast to Port Moresby’s daily diet of crime, curfews and corruption.
On moving back to Australia we had found our local Anglican church empty and flat and, to my mind, revoltingly right wing at times. It was as though the move to allow women priests had not impacted on the rigidity of the institution where the Sydney diocese had any influence. After one service I walked out in disgust when one rector clumsily tried to argue homosexuality was a sin and that AIDS was its bitter reward. Our new neighbours, dairy farmers Greg and Trish, invited us one Sunday to the Catholic church in the nearby village of Robertson, which is where we stumbled upon a Vietnamese priest called Father Francis Tran.
Relaxed, sincere and urbane, Francis was a breath of fresh air. His sermon was direct, inclusive and uplifting. He chatted after the service and invited us to his home the following morning, promising the best coffee in town. Any spiritual curiosity aside, that was incentive enough.
The coffee was good but the conversation was even better. Francis wore the mantle of priesthood so lightly it was easy to forget it was there. He told us stories of growing up under communism, about his imprisonment and eventual flight from Vietnam, and his gradual entry into the church. In turn we talked to him about our lives in Papua New Guinea, how we had come to the Southern Highlands, and Julian’s illness.
It was quite a surprise to me when, on standing at the door to say goodbye, Julian asked him, ‘So how do you become a Catholic?’
Francis put his hand on Julian’s arm and gave him an open, almost mischievous smile.
‘You have to live your life with a sense of awe,’ he said.
•••
This became our private mantra, one that we sometimes repeated to each other when it seemed that we were losing our way. Although we agreed to receive ‘instruction’, we ignored the more regressive and institutional aspects of the Catholic faith, concentrating only on what held meaning for us.
This new path led us both towards a more contemplative marriage. I never could speak for Julian, so I cannot explain from his point of view why he decided to become a Catholic. It was something very special to us both yet we rarely talked about it.
Julian wasn’t a crazy convert, he wasn’t in love with the church, he didn’t rave about Jesus, but I could see that in his own quiet way he drew sustenance from his many conversations with Francis Tran. It gave him the space to ask the questions he wanted to ask, to search for some sense of meaning and comfort. Opening up his spiritual life did not give him any protection from the realities he was facing. Instead it gave him – gave both of us – a framework from which he could approach the question of his declining health with greater openness.
Julian was always a big-picture person – through these conversations I sensed his vision of life was enlarged and he understood what living with a faith meant to others, even if he himself did not share it to the same extent.
As the English playwright Dennis Potter once said of his own faith, ‘It is the wound, not the bandage.’ In the months ahead, we both found sanctuary in the sacred places we visited, where it was normal practice to face our darkness and make whatever amends we needed to make; it was a choice that, in our situation, inspired us to choose courage in the face of inevitable suffering.
Journal entry, Mollymook, January 2001
I have needed to get away for a couple of days; I am struggling to stay afloat. Julian has not been well and I sense we’re on the brink of a new chapter.
Jules, I am overwhelmed by the thought of life without you. There’s a bird flapping furiously over the sea; now it glides, sheering over the tumbling waves. I feel like that bird right now, briefly pausing in the down-drift to gather energy for what is coming.
I look longingly at other families, crashing hand in hand into the rolling surf, knowing that this will never be our life together.
There is a heaviness within me, separating me from a carefree life. And yet there are moments where I can still surrender to joy and the possibility of hope.
I sit and draw shapes in the sand with a sunbleached stick, and watch the evening slowly seep across the sky.
•••
There are few people who are completely at home when dealing with all the unspeakable stuff of life: loss, despair and life-threatening illnesses.
I had gone to see a counsellor a couple of times at the Quest for Life centre in Bundanoon to try to get a better grasp of what was happening in my life and to find a way through feeling constantly overwhelmed. Julian’s thalidomide treatment was proving exhausting – he slept for hours on end and had little energy for anything. George, Meg and Charlotte were largely at home, with the occasional respite of preschool or babysitters for a few hours. I felt the strain of managing everything was becoming too much and I had no idea how to make the burden lighter.
The truth was, most of the time I was drowning, not waving. I’d always believed that people caring for others needed to be patient and loving and always willing to go that extra mile; I’m not sure from where I constructed this impossible ideal, but it was always there in the back of my mind – do more, be more, care more.
We sat in the counsellor’s spacious study on the edge of the Morton National Park, autumnal trees shading the window under a slow sun.
‘How is everything at home?’ she asked.
‘It’s bloody hard going,’ I said. ‘I feel completely out of my depth, and I’m frazzled pretty much all of the time.’
‘What’s happening?’
‘Oh God, where do I start? Well, yesterday is a good example of where we’re at. Julian was in bed with oxygen as he was having trouble breathing. I was in the kitchen when I heard him calling me so I started to go upstairs. Then I heard a thud and the sound of crying – one of the children had fallen down the stairs. Another one started shouting for me from a
nother part of the house and then the toilet door flew open and a voice yelled out, “Wipe my bum!”
‘I just stood there. I couldn’t decide who to go to first.’
She looked at me with sympathy.
‘I’m just so tired,’ I said. ‘And the worst part is that no matter what I do, I feel I’m doing it all badly.’
There was a long pause while I allowed myself to feel the full force of the despair I had buried for so many months.
The counsellor, as she had probably done a thousand times, passed the tissue box.
‘So,’ she said eventually, ‘what do you think are the gifts of cancer?’
Even now, when I recall the question, a sense of shock still resonates. The gifts? What the hell was she talking about?
Bewildered, and playing for time, I looked around her ordered, peaceful room: a pinboard covered with hopeful children’s drawings, and on her desk a small vase of pale flowers. As she waited patiently, I tried to think of something good. Gradually, like the first sprouting of a tiny plant, a thought manifested.
‘Well, we’ve certainly been able to spend more time together,’ I began, realising with some irony that Julian and I rarely spent a minute apart.
She nodded.
‘And although we have become more distant in some ways, in others we’ve become much closer.’
I thought of Julian’s gruelling treatment regime, about how all seven of his children were coping, seeing him so unwell, so reduced.
‘I have no idea what the future holds. So I suppose one gift is that a lot of things I would normally worry about, no longer matter. What’s important to me now is a lot clearer.’
Then, in the silence that followed, like the first sprouting of a tiny plant, I began to think about all the good things that Julian and I had experienced because of his illness; amid the strain and fear we had shared precious moments of kindness that might not have otherwise happened.
‘Perhaps you could think of Julian’s cancer in another way,’ the counsellor suggested. ‘Maybe it’s like a little bird on your shoulder that’s reminding you how to live.’
December 2000
Meg and Charlotte achieve two on Saturday, and so it will be a party in the back paddock with a few friends to fight and make a mess where it doesn’t matter. It’s been a pleasure watching the changes, bigger helpings, reacting and recently accepting orders. They still enjoy disgusting food and behave moderately well. Charlotte – the redhead – is the most volatile and has a big personality and Meg is talking the most. George is delightful, going on five, and will have another year in preschool, along with the girls this time, which should be fun for all of them.
The farm is quietly moving on with a small herd of cows and some brood mares which have just foaled. Fortunately, it is too small to be a financial drain. We have planted a lot more trees, which seem to be growing slowly, and every now and then I try growing vegetables with absolutely no success whatsoever. Being an hour and a half away from Sydney, the only problem is that it gets a bit cold in the winter, a bit of a shock after so long in the tropics.
We have postponed plans for a local newspaper, and I have given up my efforts to start a local law practice – all a bit hard after PNG, and my health kept letting me down this year with three sessions in hospital, and I have decided I am tired of law anyway and glad to be shot of it. I spend my time being a house husband and baby minder. Lucy may try to get back into some sort of part-time journalism, perhaps covering the Pacific, which has been in the news, although the coverage in the local papers has been thin considering the disasters in the Solomons and Fiji. PNG is picking up but everyone worries what will happen if Mekere Morauta does not survive the election next year. As you can tell, I still take a keen interest in non-Australian affairs.
It’s already 14 December and no cards have been sent yet. Let’s have your email addresses. Fortunately, I remain in remission with my myeloma taking heavy doses of thalidomide, which sends me to sleep a lot of the time.
My older children are still scattered. Oliver is in Barcelona finishing his MBA and hoping to work for an investment bank. Charles is still in Seoul, spending time in North Korea planning power stations – a big step up from his last job as party organiser for a Seoul hotel. Henry is in Sydney finishing off his BA and Edward is flogging mobile phones before going back to South Africa to play more polo. They are all coming home for Christmas, which will be the first time all my children have been under one roof.
Hepi Krismus na gutpela niu yia,
Julian
THE SUN
I cannot see the sun and
The moon is pressing on my back.
Hush my darling, the sun is there.
But I can’t see it,
The dirt has soaked into my eyes.
Quiet now, my darling.
I cannot see the sun today,
I’m too sad.
Yes, you are, my darling,
But stay a while, let the
Earth whisper its warmth to you,
Hold on to that small rock.
Here, let me press it in your hand.
I am sometimes frightened
By things I cannot see.
Come here, my darling,
Let me hold you fast in my arms,
When you are ready,
You will feel God’s light all around you.
Will I see it?
Yes, my darling,
It is just inside you, resting.
15
Christmas Day 2000
Lucy darling,
In recent weeks I have been battling lethargy which has returned with a vengeance in recent days. Little energy to do the simplest things let alone put careful thoughts on paper.
I adore you completely. You made me very proud. I am only sorry not to be able to return your love adequately. My thoughts are completely centred on you and the children, to whom I am devoted, even though I have far too little energy to play with them. It is super to have the boys home and Nina as well.
Above all, I love you, especially knowing I am a pain to put up with most of the time. Darling, thank you for the past five wonderful years, they have given me absolutely everything, the children and above all your love for me for which I am utterly grateful every day. It is the one thing that keeps me looking forward to the next day and the next.
I like your cleverness and your way of handling people. I like your generosity, so it is no surprise that you attract people – without you I would be left alone most of the time. I love your sparkle and wit, the way the conversation takes a lift when we run into people. Even your putdowns are fun, although I’m glad not to be on the receiving end too often.
Right now I will put my trust in thalidomide and hope that it works. If, after a couple of months, it doesn’t, then I will have another go at the chemo. I want to have another Christmas with you, with the girls talking and reacting more. If that happens, I will be grateful. The main thing is to concentrate on each day as it comes.
Love,
J
The thalidomide treatment was over by the beginning of 2001. Julian decided to stop, and I agreed it was for the best. It was having too much impact on his quality of life; it made him so tired and created pain in his feet which made it uncomfortable for him to walk. I was concerned too that it made him quite depressed, remote and closed off from me. I tried several times, probably clumsily, to raise this aspect of the treatment with him but it only made him defensive and upset.
‘I don’t have depression,’ he would say with rare irritation. ‘It’s only your suggestion that is making me feel depressed.’
Abrupt and unresolved exchanges like this made me feel even more hopeless and alone. The natural ally and friend with whom I could normally discuss anything was withdrawing more and more from me. Although I understood in part why this was happening, it did not make it any less painful.
I felt increasingly frustrated and at times incredulous at the high expectations Julian se
emed to have of me. When, after several exhausting weeks of almost constant ill health, I suggested he might go to respite care for a few days, he absolutely refused.
‘I don’t need to be in care,’ he would say.
‘I know,’ I said wearily. ‘It’s so that I can have a break.’
Instead, when he was feeling more upbeat, he would make suggestions of things we might do in the near future – such as start up a local newspaper. When I tried to explain the enormity of what this might involve, he seemed disappointed in my lack of ambition and simply continued to create budgets and make plans without me.
I was disheartened by the diminishing intimacy between us, the difficulty we had in talking honestly about how we were both feeling. Marriage in the early months had felt like a dance, coming together and moving apart but never truly separating. Now, when I watched Julian occasionally gaze off into space, I could sense that another reality was making its presence felt, placing itself between us like a rival lover, more seductive and enticing.
As if to mimic his acts of self-protection, I too began to distance myself. I found myself speaking to him at times in a more perfunctory way – only focusing on practical matters and not allowing myself to say what I truly felt. I started sleeping in the spare room next to our bedroom, close enough to hear if he needed me in the night, yet far enough away for me to forget about him and get the rest I so desperately needed.
I began to seek more and more opportunities to leave the house and take the children out to the local parks to meet friends. I felt enormously guilty but told myself it was for my own sanity. By myself, briefly and happily in denial, I was so much more content.
•••
One day, ML came to visit us on a brief trip from the Solomon Islands. She and Julian had developed a very warm and affectionate relationship over the years – they also enjoyed ganging up on me in a gentle but pointed way which was always fun. She was looking forward to an evening with us both and was clearly taken aback when, alone in her room, I insisted we go out without Julian. I think she could tell just by looking at me that this was no time to argue.