‘Listening’

Gabrielle’s prize-winning essay on facilitating telephone support groups at Cancer Council NSW was first published in the Cambridge Journal, Palliative & Supportive Care, March 2013.

They say your hearing is the last sense to go. I don’t know how they know this. But if it’s true, then after all else has passed over some invisible threshold into oblivion, all you’ll have left is whatever your ears can give you. The entire universe will be aural.

So maybe it’s sort of fitting that the medium my colleagues and I work with is a telephone. We listen. We listen as people first catch a glimpse of their own threshold, and as they slowly approach it. We listen to their fears and the pains which seem too sharp or heavy to share with their families or carry alone. We listen to the way cancer is replacing parts of them, bit by bit, where their bones or organs or blood used to be. We hear their hope – right to the end – of living a life in the best way they can, planting seeds in an ever-shrinking garden.

And they listen, too; to each other. For it’s group work that we do, gathering a small collective together in the existential spark that runs along phone lines, creating a hub of safety twice a month, so they might take an hour to bring their lives and their deadlines together and share the intangibles that only they can truly understand. As facilitators, we inevitably sort of sit at the edges of these groups, crouching around their campfire and listening to what these elders can teach us, and each other, about the journey ahead and the things that matter.

It’s amazing how much you can learn about a person through only one sense. How you can hear them growing. How the voice is more than enough.

I remember the voice of one man; rough like it’d been planed but not yet sanded. Broad with a nasal twang. He was in his late sixties, with adult sons scattered across the state, and pancreatic cancer. He lived alone. Twice a month, his voice would swagger into group and cause as much of a stir as possible.

We have a very deliberate format to these groups, with the aim of helping people feel comfortable with each other, and so that, at the end of the hour, we don’t leave anyone stranded in the deeper depths of cancer-based conversations alone. So we have little warm-up and warm-down questions that bookend the group.

He hated them. Or, perhaps more precisely, he loved to hate them. (In fact, he often gave the impression that he loved to hate the whole group – yet he kept on coming).

So if we asked the group something innocuous like, “What’s one thing you can see from where you’re sitting?” he’d complain about his old, smelly boots on the verandah, rather than mentioning the view of the ocean right across the street behind them. Or when the Easter Show was in town and we asked how people felt about a carnival like that, he’d announce, “Well, ‘The Carnival is Over’ for us, isn’t it?”

He’d grumble about having to pay for a full year on his car registration when he might not make it that long. Yet, if you followed him down that path, and asked if he was talking about death, he’d vanish or just sort of cackle at you a bit, denying anything of the sort. He was definitely a ducker and a weaver.

But as he became sicker, he wasn’t quite so agile. Then Patrick Swayze died of the same cancer, and suddenly this older man showed a different side of himself.

He talked about Patrick, how he’d seen him as a hero – and how now his hero was gone. He revealed that he, himself, had been a dancer in his day; he’d done jazz and some ballet and he was smooth in a ballroom. He said it meant much more to him that another dancer had been knocked down by this disease. It was like a brother going. There was a new waver in his voice. And new steps that he was taking, showing this vulnerability to us. My co-facilitator and I stared at the phone and then at each other, listening as the other group members comforted him. And as he let them.

It was only a couple of weeks later that I got a call.

“Oh, hello. You don’t know me, and I don’t know you either. But I think you knew my brother. He carried your phone number in his wallet with some other important things. I think he’d have wanted me to call you. He loved that group, you know.”

…..

So many voices over the years. So many people in so many groups, each adding to the other’s stories. And to my own.

Another voice was a quiet one with a deep timbre. It didn’t speak often. Although it moved slowly, you’d have to be quick to catch it, or coax it to come out at all. And it always seemed to speak last in any conversation in group, “Because I want to let the ladies go first.”

This voice belonged to a man in his fifties who lived out on a property in the country. A man who kept on working as much as he could, despite the advanced bowel cancer that tried to hold him back. When it came time to talk about how everyone was coping with their cancer, his answer was always the same: “I don’t like to think about it. I just go out and chop some wood.”

It was often cold where he lived, in a draughty old house with his wife. And, as the cancer kept spreading, there was a lot not to think about.

At first it seemed faintly funny how his response could always be predicted. While others might try journaling or painting or talking with friends or some sort of complementary therapy or other, he’d always return to the axe out the back.

And then I remembered that Buddhist saying, and saw him entirely anew:

“Before enlightenment, chop wood, carry water.
After enlightenment, chop wood, carry water.”

Here he was, our inadvertent gentleman zen guru, going back to what worked and what had to be done, no matter what the cancer had in store.

Over the months, he came to speak more often and more freely. Yet it got harder to hear him. For he spoke of his decline: weight loss; more “spots” in his liver; increasing fatigue. And, gradually, his focus shifted even further away from all of these – the things he didn’t like to think about – until it rested squarely on his wife, who he now knew he’d be leaving soon, no matter how much he didn’t want to go.

So he got ready. He planned ahead. He gave her what he could while he was still able: warmth in the lonely winter to come. And despite the exhaustion, despite how frail he and his fifty-three kilos had become, he spoke of the wood he’d been chopping. For her now. And he told us boldly and proudly and without needing to be asked.

“There’s three woodsheds full now. It’s a start.”

…..

Another voice that still seems to whisper in my ears sometimes is a woman’s voice that sounded like a girl’s. High-pitched and giggly, she’d ask so many questions that no answers could hope to fill them:

• Why?
• What treatment are you having?
• How big is your tumour now?
• Is it shrinking or growing?
• What do you mean, you don’t want to know?
• How can you not just keep fighting it?

She’d bring stories of hope and miracles that she’d heard or read, about others who “beat” their cancer. She believed in the power of positivity – she fairly cloaked herself in it. If only this velvet armour could be strong enough, with no chinks or seams where the darkness could leak in, she’d be ok. She’d fight it.

She’d already endured chemotherapy and surgery, and she’d been told the cancer could no longer be traced in her body. “All I’ve got to do is stay in remission,” she’d say.

She was a designer and a seamstress, and she made medieval clothing. Wedding dresses were a specialty. She’d join the group from the back of her shop sometimes, and say how busy she’d been, sewing these sumptuous creations for her customers. And all the while, she kept constructing her own garment of hope and grit and “positivity”.

For a long time, it was enough. And then one day, it wasn’t. Her blood tests betrayed her and her doctor was finding things she’d long refused to seek anymore.

In her final group, she joined us from her bed in the hospice. Her voice was softer, a little deeper, and it had no need of questions. Still, some hope wrapped around her, but she’d stitched it together more gently now. Though she didn’t come right out and say that she knew she was dying, I think we all understood when she said, “I only hope I’ve got time to finish these wedding dresses I’ve started. I’ve got them in here with me. I just want them to be ready for their big day.” There was no more need to fight. Just a desire to finish something of meaning and beauty.

…..

How connected we all are. How interwoven and sewn together, all our lives. So that even voices alone can reach across space and touch us; move us to another place; inspire our personal evolution.

The many voices of our group members, unique as they are, all seem to build upon one another sometimes, resounding a single, oft-forgotten truth. That despite our best medicine, our best science, and our best hopes, we all have an invisible abacus of days. And, slowly, it clicks over.

Yet there are also other sounds which supersede that ticking. Sounds which might even be made more beautiful because of their transience. Like the sounds of feet on the dance floor, of warmth in the wood being chopped, and the near silence of thread being drawn through silk.