A Bird on My Shoulder (14 page)

I knew she was upset with me. When we arrived, with mounting anxiety I talked on, trying to defend my decision from her imagined criticisms and continuing my litany of complaints. ML listened thoughtfully, occasionally swirling her glass of red. I knew she was unconvinced by my protests – the only question was how to tell me.

‘So,' she said eventually. ‘Do you want to be right or do you want to be happy?'

I met her level gaze. ‘Can't I be both?'

‘Sorry, no.'

She then proceeded, gently but firmly, to dismantle everything I had said, reminding me of just how much I loved Julian, asking me if I could not use this opportunity to grow rather than shrink into a smaller, and more limited person. Everything she said resonated – even though I could justify why I felt the way I did, I knew I was letting myself down, allowing self-pity and petty concerns to overwhelm my world view and my ability to be compassionate.

She reminded me of my vows – what I had made a sacred promise to do, the person I had pledged I would become. I told ML that the internal struggle to maintain a spirit of generosity in the face of all the daily challenges was enormous.

‘I understand that,' she said. ‘But you have a choice. And I know which direction I would rather you chose.'

Tears spilled down my face. ‘I hate you sometimes,' I told her.

She smiled and took my hand. ‘That's what friends are for,' she said.

•••

After thalidomide, another possible delaying tactic was lost. It was back to chemotherapy, bisphosphonates, infusions and an uncertain waiting game.

I could see that the children intuitively knew something was different, although we kept any comments about Julian's health quite vague and minimal when they were around. George became even more careful, something I particularly noticed when Julian's energy was really low. He would often sit next to his dad playing quietly for as long as possible, occasionally looking up and drinking in his father's face.

At two years old, Meg and Charlotte usually only had eyes for one another. When Charlotte was distracted, however, Meg would often approach Julian with some tiny object she'd found, such as a little flower head or a leaf; if he was sitting in an armchair she would place the object next to him where he could see it.

‘Thank you, Megsie,' he would say, putting down his book.

She would smile shyly at him, hover for a while in his presence, then wander off in search of other treasures.

Charlotte was far less likely to notice any of Julian's barriers. If she wanted his attention, she would simply climb up onto his lap, unaware of his discomfort, and force him to stop whatever he was doing. She'd sit for a few minutes, chattering away incoherently. She seemed to glow in those moments – any attention from Dad was very special and it was always clear that, however he was feeling, she loved being with him.

It was bittersweet to watch them.

In a sense, Julian and the children were living in a far more ethereal place than I was and I often longed to join them there. Instead, I felt smothered by the daily realities of cooking, shopping, fixing, washing, ensuring that everyone had everything they needed. I felt like a circus act, a mad woman spinning plates, rushing from one wobbling pole to another. When I could escape, I did. Reading bedtime stories to the children was something I found especially soothing, as were books, music, wine, prayer or conversations with my closest friends.

Fortunately, there were so many moments of kindness towards us all during this time, so many thoughtful gestures. These acts of love were sometimes my only refuge as, exhausted and despairing, I drew strength from everyone else to help me push back against the fear of what was coming next.

•••

During our holiday in Byron Bay, Julian had bought a size-able bag of marijuana leaves from a street seller in Nimbin. We had been pushing the pram along the street when Julian, looking every inch the patrician lawyer in his checked shirt and leather brogues, disappeared down a side street. He had already flagged this possibility with me but I tried to talk him out of it, convinced he would get arrested. I carried on walking down the street pushing the pram, feigning innocence. A few minutes later he returned to where we were waiting, looking very pleased, with a plastic bag stuffed into his jacket pocket.

Julian had been reading about the effects of cannabis on pain and nausea following chemotherapy – his attitude about everything was pragmatic. Conventional drugs were not always effective, so why not try something else?

One night, after a particularly trying day, I walked into the kitchen to find him attempting to roll a large joint. For the first time in a long while, we began to laugh together. I fetched a bottle of wine and we sat by the fire, smoking.

Emboldened by the effects of the joint, I fetched my guitar and a Beatles songbook and we began to sing. I can see us now, standing at the messy kitchen bench, me with one foot on a stool playing out of tune and Julian singing loudly and enthusiastically with a large glass of wine in his hand, all pain forgotten, all fears dispelled.

Later, we lay in our bed watching a storm at sea; erratic flashes of light danced on the dark horizon, illuminating our faces.

He leaned over and kissed me in a way he had not done for a long time.

‘I adore you,' he said. ‘I absolutely adore you.'

I put my head on his chest and began to weep. He took me in his arms as he had done so many times before and, in the quiet, unfolding night, we stepped back into love.

I had never felt more exposed, or more grateful to rediscover the love between us. But, more than that, I was in awe of Julian's willingness to show himself in all his spent humanity as we danced in the darkness and remembered who we were.

FRAGMENTS

I am the vast forever in every ocean's roar

I am the tiny seed-shell that lies upon the floor

I am the foaming waves of fury dashed upon the rock

I am the helpless wheels that turn inside an ancient clock

I am the tender breezes within a crumbling flower

I am the fresh tomorrow that life will never sour

I am the loving mother with a baby at my breast

I am the weary traveller, longing for some rest

I am the lonely fighter who rides across the hill

I am the stoic heartbeat that fear will never still

I am the soothing lover with joy upon my face

I am the gentle grass that sways with unrepentant grace

I am the silent footsteps that walk around your soul

I am the one who loves you, imperfectly but whole.

16

We turn our shining faces towards the sun, towards

the world, and secretly we long for a place, a friend,

a space to be where can tell all of our truths.

There were several occasions when neither of us realised how ill Julian was. The day might start with a slight cold and develop into a slightly raised temperature by lunchtime. By midnight it could be full-blown pneumonia.

One evening I came home after swimming with my friend Celeste. The house was quiet. The babysitter had managed, by some miracle, to settle all the children into bed.

Later in the night I heard Julian coughing. When I went to him, he was sitting up with a handkerchief to his mouth, his eyes watering.

‘Don't fuss, it's nothing.' This would often be Julian's initial response as I hovered around him with a thermometer.

‘It's 38.4,' I would say. ‘Perhaps we should go to hospital?'

I left the room to phone for an ambulance. He went placidly, grateful to be helped, gracious as ever in defeat.

Within six months Julian was admitted to hospital with pneumonia three times, each occasion taking an enormous toll on his overall health. I knew this could not go on indefinitely, but while he was being treated I took the opportunity to breathe a little more deeply for a while.

While he was convalescing one afternoon and the children were being cared for by our wonderful eccentric babysitter, Francie, I went to Hartzer Park, an imposing and almost ugly gothic convent a short distance from our home. From the outside the convent appeared cold and unwelcoming, its plain brick façade imposing, covered with veins of brown, frost-burned ivy. I was welcomed by an elderly nun who said little, but walked
ahead of me down the austere corridors to a tiny prayer room, lit only by the fading sun.

I let the peace in the room soak into me, observing my heavy out-breaths, my laden heart. Unobtrusively, another sister who had been expecting me came into the room and sat in a chair next to mine.

‘Perhaps you would like to tell me why you have come,' she said.

There was such a peace in this simple, unadorned room that I had instinctively relaxed. There was so much to say, I did not know where to begin. So much of our lives had turned into a waiting game – waiting for results, for tests, for appointments and crises. We were at the mercy of a vast and unknowable medical system, and an unpredictable disease.

Gradually I felt drawn into a deeper place. When my words came, they were spoken by a voice I rarely heard: a voice of calm.

I told her about Julian and the pain of loving someone I had already begun to grieve for.

‘I feel as though I am at an airport,' I told her, ‘and I'm waiting in the transit lounge. Every time we go to the emergency ward I never know whether Julian is coming out again. It's as though a flight is called, and I prepare as best I can for what is coming, and then it is cancelled. The doors are suddenly shut and I am left to walk back to my seat in the lounge and find, somehow, the energy to go on.

‘I don't know how to live with all this uncertainty. I feel terrible for saying this, but there's a part of me that wants it to be over. I'm so exhausted and afraid of what's coming. It's the moment that I am waiting for, and it's the moment that I dread the most.'

Somewhere in the bowels of the vast building, a bell rang for suppertime. I noticed for the first time a painting on the wall, a boat plunging in a stormy sea, men's contorted faces tilted skywards, their anguish and fear palpable in the dusky light. From the sky a strong, muscular hand was reaching down, while one man's straining arm reached up towards the only hope in sight.

We sat there in the gloom as the light dimmed; the huddled outline of winter trees faded against the window.

‘Can you surrender?' she asked.

Soundlessly, without warning, the tears began. Emptying and then gathering again like a returning tide, the tears spread across my face and soaked my neck, soothing a space inside me where I could no longer speak.

Mercifully, the nun gave me no advice about being prepared and facing reality, nor did she exhort me to find a deeper understanding of our situation. She must have known that my logical mind could not help me anymore – even my imagination had failed. I felt my heart ripen into a strange peace, a deeper knowledge that I was not in control, that I never had been.
None of us were. It was, once again, an invitation to yield, to hand over to mystery and let whatever lay in store unfold in its own way.

I felt the anchor of her companionship, the comfort of having her just sit and be with me. Breathing in, breathing out, I was lulled into the pause where there is no future or past, only the soothing present, in which nothing was happening. In that fleeting moment, I slipped through the cracks of my life and glimpsed, with exquisite relief, a place of deeper tranquillity.

And in the simplest of human gestures, in that dull room, with its outdated, daggy furniture and kitsch statues of Jesus, this gentle woman gave me an unexpected and much-needed gift – she returned me to myself.

•••

With cancer, no peace lasts for long. At the end of July, pneumonia struck again. I had noticed one afternoon that Julian seemed to be sleeping for an unusually long time. He eventually woke just before dark, his skin strangely pallid. I took his temperature – 36 degrees, somewhat lower than normal. Despite his appearance, I took this as a good sign – clearly he did not have a fever.

However, by about 9 pm I was becoming worried as his sentences became more disjointed and he seemed to be
increasingly disorientated. I took his temperature again – 35.4 degrees. It did not make any sense. I decided to ring a family friend and local paediatrician, Nils, who I knew would not be offended by my calling at such a late hour. I described Julian's symptoms, adding that it was definitely not a fever as his temperature was so low.

‘Actually, that's not a good sign,' Nils said. ‘It's probably an infection. I'd get him to hospital.'

There was no way I would be able to help him to the car by myself nor at this late hour find someone to come and care for the children. I rang an ambulance and sat upstairs with Julian. Before long the paramedics were knocking on the door.

‘Jules,' I said, placing my hand on his huddled form, ‘the ambulance is here.'

‘I'm fine . . . thank them for coming . . .'

‘Jules, seriously, you need to go to hospital – you're very sick.'

No answer.

‘Jules, please.'

‘I'm not going.' He pulled the covers up around his shoulders.

I went downstairs and explained to the ambulance officers what was happening and they went to speak to him. Returning soon after, they said that Julian had refused to go with them.

‘We can't force him to go,' they explained.
No, not yet, not yet.

There was another knock at the door.

It was Nils, who had somehow divined without even being asked that his presence was needed. The four of us sat together, quietly discussing our options. It was clear that if Julian got his way there was only one outcome – he would die at home within a short space of time.