A Bird on My Shoulder (15 page)

‘Nils,' I said urgently, ‘this is not what he wants. He was talking only this morning about wanting to be here for Meg and Charlotte's birthday at Christmas. He's not thinking clearly because he's so sick. Please, see if you can talk to him.'

As I waited with the ambulance officers, I could hear the low murmur of Nils's patient voice and Julian's occasional rasping response.

I sat in dread until I heard the sound of footsteps and felt a hand on my shoulder.

‘He says he'll go,' Nils said.

The officers nodded and headed upstairs.

‘Thank you – thank you so much,' I said.

•••

The following evening I went to the hospital, where Julian was in a private room in the intensive care ward. He was very pale, but glad to see me.

‘It was a close call last night,' I said. ‘I thought you've given up.'

‘No, darling,' he said weakly, with a sad but undefeated smile. ‘I'm still here.'

I did not stay too long as I knew my presence was tiring him and he needed to rest. I still had not spoken to the doctor and wanted to find out more information before I left.

I hovered by the nurses' station for some time, waiting to speak to the registrar in charge. I watched him as he spoke to the other patients, largely indifferent to the throng of anxious assistants around him, hanging on his every word. He held his plastic clipboard in front of his chest, speaking over the patients' heads, rarely meeting their eyes as they sat wide-eyed and respectful as he pronounced upon their lives.

‘Excuse me,' I said, as he stood in front of a small sink, his slim fingers soapy with pink froth. He ignored me.

‘I wondered if I might talk to you about my husband.' I cringed at the pleading tone in my voice.

‘And he is?'

I named him, the grey-skinned man in the isolation ward, the man currently eating his dinner through a straw.

‘This is not really a good time; I have other patients to see.'

‘I just want to know how he is, what's happening. I haven't been able to get here because of the children.' I stared at him expectantly – he would not meet my eyes.

‘Well, it's obvious, isn't it? He's dying.' He began to wipe his hands on a paper towel. There was a long pause while his words cut through me.

‘If you have any questions, I'm sure the staff here will be able to help.'

I walked out of the ward and into the lift. I felt disembodied, at once exhausted and yet strangely energised by the shock of his lacerating words.

Anger and outrage hit me on the way home as I drove towards our sanctuary, our children, towards the fragile life I had so painstakingly created and now could not protect.

A few kilometres out of town, I pulled onto the side of the road. I was shaking with fury.

‘Bastard!' I screamed out loud; tears and snot dripped into my lap as I gripped the wheel. ‘You absolute bastard.'

•••

When we spoke a few days later, Julian's voice sounded stronger. I told him nothing of my conversation with the doctor; I knew it would only distress him.

‘I'm coming home,' he said. I could tell by the tone of finality in his voice that he had passed through a profound turning point. There was a long pause while I digested what he was not saying. He was coming home to die.

OUR CHILDREN

Three budding flowers

In the summer of my life,

The autumn of yours.

Their ripening petals

Unfurl around you,

Softening your winter memories,

Warming with gentle breezes

Your falling, fading blooms.

Out of season they came,

Unexpected, joyful blossoms

To feed your weary spirit,

Offer their soul's essence,

And lead you back home.

They know all about death,

More than we do. They know

These stars, this moon, this firmament

Is within them, that what we

Bend down to whisper as magic

Is really the endless mystery

Of creation,

Breaking and mending,

Beginning and ending.

They burst into your life like blossoms

Carried on a southern wind

From a far, faraway place

To call you home to rest.

17

Those days were like dry brittle leaves, dropping

unseen; another cup of tea and child crying.

The next morning I sat in the shivering garden watching the children play in the sandpit. A small hunched figure in a woollen hat. A slab of sorrow.

There was a swish of tyres on gravel and the sound of an old car door clunking shut.

Julian smiled ironically when he saw me, as if to say, ‘Well, I'm still here. Just.' His skin looked drained and pinched as he shuffled into the house and I followed him inside to make tea.

I stood by the kitchen window, one hand on the warm kettle, the other on the bench. I pulled my cardigan tighter around me as I gazed over the garden. A magpie flew down and began pecking at the clothes pegs on the grass. Its sleek black tail bobbed and flitted under the flapping sheets. I wanted to stand in this spot for as long as I could, to remain in the safety of
this eternal moment, to make it last.
The worst is happening
, I told myself.
It's here.

•••

Later that night, Julian confirmed what I had already guessed – that he would not return to hospital under any circumstances. It was clear that we had passed through yet another invisible door and were now in a place where our life together would be measured in weeks, possibly days.

Julian's decision brought both anguish and relief. He had already done so much to prolong his life and stay with us – I did not feel I had any right to ask any more of him than he had already given. Even if I had, what difference would it make except to alienate us when we needed each other the most? He wanted to die at home, surrounded by his family, and that was what I wanted too. That night I made a promise – I would do everything possible to give him the death he wanted and deserved.

Ever my mother's daughter, I immediately started to address the practicalities of our situation. I needed the guidance and advice of a palliative care team; I needed help with the children, knowledge of any medications and what to do if pneumonia, which he had only just narrowly overcome, should strike again.

Driven by a sense of urgency I called on all the local resources I could muster. Julian's older sons also needed to be kept abreast
of everything that was happening – particularly Charlie, who was away in Seoul, and Oliver, who was also overseas.

My relationship with the boys had, by this time, spanned more than six years, and we had all settled into a state of comfortable friendship and respect. Now I needed them; this was not a journey I felt able to take alone. Although I was conscious that the experience might be especially difficult for them, as they had already lost their mother, still I felt confident they would know what they needed to do; I admired the support they had always given Julian and was grateful for their presence.

•••

While doctors were helpful in explaining Julian's likely medical needs in the days ahead, I focused on his emotional and spiritual life. I had already been reading as much as I could – Elizabeth Kübler-Ross's
On Death and Dying
had become my bible, a blueprint of a path I should try to walk when the time came. I was trying my best to prepare but Julian's death was impossible to imagine. I would never be ready. I could only hope that I would be enough.

Henry organised for us both to attend a conference on Spirituality in Palliative Care at the Nan Tien Buddhist temple in Wollongong. Catholics, Buddhists, Aboriginal healers, palliative carers all spoke about what they had learned about caring for someone.

One speech began in a very unexpected way when a diminutive Filipino woman with greying hair quietly shuffled onto the stage in an old-fashioned blue housecoat, pushing, as I recall, a tea trolley. I'm sure I wasn't the only one in the room wondering if she was lost.

Then, quietly and with enormous dignity, she walked to the microphone and began to explain her role in a Sydney hospice.

‘When I am with the dying,' she said, ‘I take them tea. But that's not what is important – the tea is just my excuse.'

Relieved, muffled laughter scattered across the room.

‘I bring my presence, my brokenness, my humanity, and we sit together.'

Driving home up the winding Macquarie Pass with its ancient outcrops of weathered rock walls, I felt grateful to be reminded not to get caught up in the detail and distraction of what was happening to Julian's body alone. I needed to love him, to stay connected with the man he truly was; and to allow us both to love one another, no matter how imperfect either of us might be.

•••

As the days passed, time no longer felt like a seamless line along which we could move at will – remembering the past, thinking about the present, worrying about the future – but was now almost one continuous, almost static moment.

In this sacred time, so many things that did not really matter simply fell away. There were times when, instead of fussing about the play dough all over the floor, I stepped over it and noticed instead the way the light was falling through the kitchen window as dusk approached, the sun squandering its last offering of warmth. Rather than worry about the mud that would be coming into the house, I felt the wind hurtling past the trees as the children repeatedly climbed and leaped to the ground. I inhaled, as I never had before, the sweet decaying stench of rotting earth and the touch of thin fibrous leaves. I found myself leaning more towards another reality, absorbed and transported by all the extraordinary details of everyday life.

Without my fully realising it, I was being slowly stripped down. I moved into Julian's space, seeing the things that he was noticing, the details of life that we both might have previously overlooked. I focused as much as I could on sensing and trying to tune in to where he was even though he was often in a world I could not reach. I looked on with envy at times as he moved into ever deeper acceptance and a seeming contentment.

One day, when a flurry of morning snow came, I took him tea. He was sitting up in our large bed, reading
Mountaineer
by Chris Bonington. He was so terribly thin. The hardback book was cracked open, his glasses were off and his nose was almost touching the rigid paper peaks.

‘It's snowing, Jules,' I said.

The book was closed with a soft sigh.

I expected Julian to complain, to say something about the frost on our newly planted trees, and about how cold these days could be, these long, uncertain days. Instead, he took my hand and gazed out of the window at the falling flakes, his expression full of awe.

‘The snow,' he said, and then repeated it. ‘It is so beautiful.' I remember crying in his arms, my hot red face buried in his shoulder, his hand on my back. I cried not because he was dying, but because he was seeing, as I was through his eyes, the pure and simple beauty of snow, possibly for the very first time.

•••

I often wondered whether Julian would ever break down, whether there would be a moment in which he cried, raged or protested against his fate. That moment never came.

When Spring arrived, I brought branches with tiny poised buds of blossom from the garden and laid them in his vulnerable hands. His skin had the fragility of fine, dried-out paper.

‘Thank you, darling,' he said, always gracious and grateful for every act of kindness he was shown.

I had decided to ask Allan, our main source of physical strength, to re-landscape what I considered to be quite a depressing section of our back garden.

Behind our house, in the middle of the extraordinary landscape of Kangaloon, with its wild ghost gum forests and silken hills, was the vision of a 1960s suburban dream – a great concrete slab with a Hills hoist in the centre. I couldn't deny its usefulness, but I cringed whenever I saw it.

The children had a mixed relationship with this part of the garden too. While it was great for wheeling a tricycle or pushing a doll's pram, they often fell over on it, scraping the flesh of their knees and arms, while all around the patient trees with their dappled, dancing light beckoned us to their shade and softness.

When I explained my plan to Julian, he disagreed. Ever the pragmatist, he thought the concrete was useful for the children – and if I dug up the ancient hoist, where would we hang our washing?

It was hard to answer – I only knew that my heart and soul needed more beauty and that the harshness of that awful grey concrete just outside our back door affected me deeply, irrationally.

Despite his initial protest, I think Julian understood for he said nothing more against the idea. Within days the offending area was excavated and replaced by a tentative lawn with stone steps leading to a small cubby house for the children under the wisteria. Our friend Maur donated an outdoor table.

When it was finished, Julian shuffled down the stairs in his dressing-gown to stand at the open door.

‘I rather miss that washing line,' he said with characteristic irony.

And I remember thinking as I looked at him,
He knows we're going to be okay
.

•••

Many people came to visit Julian during his final weeks. Most times I loved to see our friends, to bask in the kindness they brought us. Late one afternoon, however, an acquaintance of Julian's came. Initially I was pleased to see him at the door and I knew Julian would be happy too.

But as he walked into the house, I realised he had brought two of his young children with him. I watched in dismay as he settled in a chair next to Julian and opened two bottles of beer, already oblivious to where his children might have gone.

I went into the garden, where they were all playing, seething with frustration. It was typical of a certain kind of man to turn up announced with two small children and then effectively abandon them without a word into my care.