A Bird on My Shoulder (13 page)

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.

•••

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 another 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.'

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

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 seemed 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.

‘Okay,' she said sadly, ‘if that's what you want.'

Our friendship was such that, under normal circumstances, if I said something she considered outrageous, she would not hesitate to challenge me. It was one of the great joys of our friendship that we could have a very robust, even confronting,
conversation without doing any real damage. She buried her disappointment under a quiet smile and we left for the restaurant.