An edited extract of this was published in The Australian Women’s Weekly 2004
By Ruth Ostrow
It was a cold afternoon early in 2001. I made the pilgrimage to Sydney from Byron Bay to visit a terminally-ill girlfriend.
Not realising the weather would be so cool I set aside an hour before my appointment to go shopping for a coat. As I walked down Oxford street I was trembling - from cold, from fear. I was bracing myself for what I would see. Deb Bailey was one of the most beautiful women I knew. High cheekbones, a fresh open face, a seductive smile and large empathetic eyes that really saw you.
“Be aware that she has deteriorated very quickly,” her husband David Armstrong, my friend and then-boss as editor-in-chief of The Australian newspaper, told me over the phone. “She can’t speak, and she already has trouble holding a pen but she can communicate through notes.”
She had been communicating. Long emails, telling me her fears, her dreams, her nightmares. She had only a short time earlier found out that she had Motor Neurone Disease, of the most virulent kind. “Enjoy the weeks and months ahead,” the doctors had said, ominously.
She refused to give in, writing me the most amazing letters of courage as we searched for meaning, searched for hope, and for the sacredness of life, together late at night when she couldn’t sleep.
But one day the emails stopped. Already confined to a wheelchair, her muscles deteriorating rapidly, she was having trouble sitting at the keyboard. She was 47 years young, vital, inspirational, one of the top women’s magazine editors in the country, former Assistant Editor at The Australian Women’s Weekly, with two daughters who shared her beauty. I jumped on a plane.
Ah grief. It’s a vast country. A foreign land. This was the beginning of a long journey for me into that wilderness of pain and sorrow that would span three years and span four friendships, as woman after young woman in their 40s – all treasured friends - died from illness and disease. As a journalist and writer I would struggle to grasp through words what was not, and is still not, graspable.
I remember feeling bewildered and frightened as I scoured Paddington for a coat shop, wondering how Deb was going to look. Steeling myself for the shock, I wandered past a shop full of sexy lingerie and see-through silly things. What was I thinking?
To this day I am still miffed by my behaviour. I had never bought sexy lingerie before and not since. But suddenly, as if it were the most important thing in the world, I ran into the shop and started spending my coat money. Compulsively.
A staggering $1000 poorer, I stumbled into the street carrying bags and bags of knickers, bras, leopard-skin leotards, shiny PVC pants, a red silk Suzy-Wong bodice, fishnet stockings, a fishnet top, and a pair of pink, velvet cat-ears that to this day have me shaking my head in shock as they sit in my wardrobe gathering dust.
I was shivering from the cold, trying to hail a cab, holding ridiculous things I’d never wear. It would have been comical had I not felt sick with guilt.
Some time later, prominent grief counsellors Mal and Dianne McKissock - founders of the internationally-acclaimed Bereavement C.A.R.E Centre in Sydney - would tell me that the way people grieve is extraordinarily different. Some will cry, other people will go on party or sex binges or do escapist things, some will go on shopping frenzies, others will be in bliss and find God, others will be furious, others will just go cold and stony silent. “None are better than others,” said Dianne.
“Whatever your defence mechanism is from childhood, to run away, or scream, or hide, this is what you will most likely do in times of extreme stress of which grief is one. Don’t feel badly Ruth. Don’t feel badly for panicking at mortality. Your purchases were an expression of love-of-life.”
That day however, not yet having the benefit of those kind words, I sat the whole way to Deb’s in the taxi berating myself for being “shallow”, “an awful friend”, “a bad, bad person”. “How could you do this as your friend lays dying?” I yelled at myself inside my head as my mind filled with images of sexy lingerie and my sweaty palms made anxiety marks on the elegant paper bags.
I arrived with no time to put the bags down. Instead I followed David straight into the kitchen where Deb was sitting limply in a wheelchair.
Standing in front of her was the hardest thing I have ever had to do. Here was my friend, so beautiful, and alert, flopped in a wheel chair, gaunt, pale, face frozen from the disease, dribbling slightly, watching me for signs of shock.
My face was fighting itself. The false smile was so false as to make my lips tremble. I was finding it hard to breathe. “Show her what you bought,” said David, peeking into the bags. I went bright red. “But it’s lingerie,” I whispered. He took me aside. “She wants to feel alive, not be pitied, not talk continually about death and illness. Show her the stuff, she’ll love it. Treat her like a girlfriend,” he said discreetly disappearing into the next room.
My heart was breaking for him in that moment - her beloved husband who attended her every need till her moment she died, trying to second-guess her every desire. His courage and devotion became legendary, as have his efforts with Deb’s friend Robyn Paine in setting up the Deb Bailey Foundation for MND research.
One by one I dragged out the stocking’s, the frilly and fluffy things, as she nodded and wrote on pieces of paper how beautiful each piece was. It was like a scene from an absurdist play or a strange arthouse film. Me prancing around the kitchen with cat ears, and a pink, furry bodice, she with her extraordinary sense of humour enjoying the pantomime, scrawling merrily, her “oooo’s” and “ahhh’s” on bits of paper and holding them up. I played too for a few moments, lost in escapism, lost in her joy and amusement.
But then her teenage daughter walked in the room and the spell was broken. Something inside me snapped. In those first minutes I had been in too much shock to take it all in. But as her child entered it all suddenly registered. “Oh my god,” my mind screamed. Deb saw the truth cross my face.
“It’s okay Ruth. I know how you must be feeling seeing me like this,” she wrote and handed me the paper. As I read her note my face - so tired from grinning - just cracked. Not out of pity but at her extraordinary compassion for me. Her kind, kind soul. There I stood clutching cat ears in my clenched fist, as the tears began spilling out, everywhere, all over everything.
In this society we are not allowed to show grief in front of people who are dying, but what else on this earth is a greater tribute of love than our expression of emotion and pain? It is okay to laugh and it’s okay to cry or play with sexy lingerie or just be. There are no ‘shoulds’ in this mysterious, scary world of grieving.
Within a few months of this special day Deb had died. She had only lasted five months after diagnosis. I had always believed that the first death is the worst. Like the first time someone breaks your heart, or the first time you fall. There’s a shock to it, a quality of indefinable confusion that somehow intensifies the pain, a loss of innocence that we grieve the first death.
I now know this not to be true. For grief isn’t one thing. It is a whole world with its own languages and cultures. Order has nothing to do with it. Some deaths leave us with a sense of abandonment, a loss of intimacy and closeness, others with guilt. Others are almost joyous - the releasing of an ‘old soul’ back to God.
The death of a baby which I went through with one of my girlfriend’s during this fitful time has its own particular quality of emptiness and meaninglessness, the loss of an older child holds a sense of terror and existential anxt. My own dad died young, whilst his hair was still black and shiny, and I have never gotten over my rage and despair at his leaving so soon.
Losing Deb was the first of a new and terrible kind of grief we all have to face. One which has changed me forever - losing a peer, a mate, a buddy. As my Fate would have it, I was to lose three more women of my peerage in the months ahead. Two were cousins. All had children. Peers are like mirrors of our own body. We mourn our own ultimate passing as we mourn theirs, we mourn for their children as we mourn and fear for our own.
One by one each died, and it never got easier.
Whilst I was on planes to Sydney visiting Deb, I was also on planes back and forward to Melbourne where I grew up, dealing with my sick cousin.
She was 44 years of age at the time – four years older than me. She was like a sister, we had daughters of the same age. She trusted me, and I knew I had a privileged place in her heart. She was a fragile woman. Externally robust, always laughing, curvaceous, full of life and love, but like so many of us, a girl underneath.
Just before the news came through about Deb, my cousin rang to tell me she’d been feeling unwell. Her blood tests weren’t looking good, she was turning yellow. She was waiting for the results of a liver biopsy. I waited too, high on a hill-top, in rural Byron Bay, where I had moved from Sydney for my sea change.
“Don’t keep calling,” my mum had chastised me. “We’ll call you when there’s news.” The days were long, without any call. Finally I picked up the phone. It was dead. Somewhere out in a field miles away, a backhoe was preparing the ground for a new property. In his ignorance the driver had cut the cable linking my line to the network. I hadn’t realised. My mobile was out of range.
Finally down the hill, I managed to reach someone in my family on the crackling mobile. While the phone had been dead my cousin had been rushed into hospital. She’d been diagnosed with cancer. It was in her lungs and they suspected it was elsewhere given the signs.
Sitting in my car, cut off, alone, by the side of a dusty road, no one there to comfort me in their warm arms, I remember gazing out over the grass and feeling helpless, terrified and alarmed as the adrenalin was making my tummy do back-flips.
“It’s so unfair. She’s so young and vital and passionate…she has a young daughter!” I railed at the windscreen that reflected back my distorted face.
I remember the sky so pure and open above me. The sky that has watched terrorist attacks and murders and wars and personal tragedies. I watched the indifferent animals wandering about, the birds still chirping. That’s the funny thing about grief. You can’t understand why the world doesn’t just stop.
Optimism, denial, optimism, denial. Where does one stop and the other begin? My first trips to my dying friends I brought books, stories of courage, positive statistics, Buddhist philosophies, and my belief in yoga and reiki energy as self-healing tools.
Talk to the doctors and there’s always the cold, hard facts. Talk to natural therapists and miracles abounding everywhere, if not in curing cancer or disease then certainly in creating longevity and a richer quality of life.
Deb was open to everything and had a very peaceful death, despite her pain, as a result of the spiritual world she embraced before she died. My cousin met me with a curious stare. She was in denial which made it difficult for me. It’s hard to say goodbye to someone who isn’t going anywhere.
“How would I be if it were me?” I’d ask myself when I became frustrated. I know now that she did bravely confronted her own death with dignity and courage. But she couldn’t come to terms with having to say goodbye to her treasured daughter - only a little girl of eight. Which mother ever, ever could?
I’m crying as I write this. Crying for all of them. Still. There’s no time limit on grief. It is an endless well of acceptance of the losses, inevitable and tragic, that we have to go through over a lifetime: person by person, love by love, the old houses we cherish, our nanas and papas and parents, and friends, precious things, sometimes our children, eventually our own selves taken piece by piece by aging, illness or accident. And each loss takes us back to the great well, where we stand looking down at all the losses looking back at us.
We grieve not only for the people who have gone but for how it could have been with them, what should have been, the child she/he would have grown into. How much our dad would have loved to meet his grandchildren. Each Christmas, each birthday, each anniversary we grieve, endlessly.
“What is the meaning of life?” I’d ask my God in those trips back and forth. Before Helen and Deb would die, I was to get a phone call from another beloved friend in Sydney, another Helen - mother of two girls, who had been fighting stomach cancer. The prognosis was grim.
I was planning to go visit her, when Deb Bailey died. One week I stood in the pouring rain at the cemetery in Sydney burying Deb, the next I stood in the pouring rain at the cemetery in Melbourne burying my beloved cousin. Between all this I went to visit my friend Helen to say goodbye. Helen was an extraordinary and compassionate human being. This anecdote best sums her up. When I told her of Deb Bailey’s death she said: “Poor thing, how tragic for her and the children.”
Helen like Deb had accepted her death. In doing so they left valuable things for their daughters, diaries, notes to read as they grow. They said things that needed to be said.
A few months ago, with a sense of death behind me, another cousin, a beautiful mother and friend, had a massive coronary. Apparently she just looked up over morning coffee and said to her companion: “I feel I’m about to go on a journey somewhere,” and then slumped over and died. She left three children.
I have cried so many tears my face is older from fluid loss. But I have laughed also.
For what I’ve learned is this. To say all the things we need to say now. Not to put it off, not to hold back on words or feelings nor money. To dance as if no one is watching and live life to the fullest, seizing every moment. To not put off spending time with our children, parents, partners, or telling them a million times we love them.
The Buddhists have saying: “Keep Death as a friend, always on your shoulder”. Each moment we and our loved ones are alive is a gift not a given. Only a few of the millions of fish born to one mother make it out to sea. It’s the law of Nature. I have learned that accepting death helps us celebrate life.
I’ve learned to allow ourselves to grieve as long and hard as we like, as madly and badly as we like. It is our duty to honour those we love by silencing the silencers who would gag our souls.
But mostly I’ve learned this: there is always, always room for hope.
Do not stand at my grave and weep
I am not there. I do not sleep.
I am a thousand winds that blow
I am the diamond glints on snow.
I am the sunlight on ripened grain
I am the gentle autumn rain.
When you awaken in the morning's hush,
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry.
I am not there: I did not die
Mary Elizabeth Frye (1904-)
