By MELISSA WELLHAM
It was winter in 1999. Helen Sage was having a tough week. Her 22-year-old daughter, Sarah, had been diagnosed with Crohn’s disease – a chronic inflammatory disease of the intestines – and had just had surgery.
She was worried about Sarah, and focused on looking after her.
But – as we all know – the universe sometimes has a tendency to kick people when they’re already down.
Because while Helen was worried about Sarah, Sarah’s twin sister Jayne was involved in a catastrophic car accident when the car she was driving struck a truck.
When Helen and her family first rushed to the hospital, they were unprepared for how peaceful Jayne looked.
In an interview with Mamamia, Helen says she “felt totally gutted. Though Jayne had only a graze on her right temple, she was breathing on a ventilator amid myriad tubes – her dependence was profound and shocking.”
Jayne was in a coma, and her life hung in the balance.
She stayed in that coma for months.
“Those months and beyond were a time of wrenching grief. I stayed by Jayne’s side as much as possible until she roused. I read excerpts from books such as Ted Freeman’s Catastrophe of Coma,” says Helen.
Helen found it impossible to give up hope – and made sure spent time with her daughter every day. “I involved myself in Jayne’s care every day. I told myself, ‘It is this day only that needs to be managed.’ I watched for any signs of arousal, believing that surely at some point she’d wake,” Helen says.
Even though Helen wasn’t sure if Jayne could hear her while in a coma, she still spoke to her daughter. Helen wanted to fill her daughter in on what had happened to her in the accident – and what had happened to the rest of her family in the meantime.
“Intuitively, as a mother, you want to be close and to ‘communicate’. I spoke to Jayne often, as if she could hear and reason and understand. I told her that she’d been in an accident, that her brain had been hurt, and that doctors, nurses and therapists were helping her. I told her that we – her family – were with her always and that she would improve, bit by bit, day by day.”
Helen tried to stimulate her daughter in different ways, waiting for some sign that her daughter would be returned to her.
“I massaged her limbs, and when she could breathe without assistance I took her into the gardens in her reclining chair,” says Helen. “I read favourite stories to her or played soft music or talked about what was happening around her.”
And day by day, Helen kept going. As did Jayne.
Jayne had been a young woman who loved the outdoors and nature. One can only imagine how difficult it was for Helen to see her daughter so unlike herself: bedridden, inside, paling under fluorescent hospital lights.
In the months that followed, Helen had to stay a pillar of strength for her family. Her family, whose dynamic had been irrevocably altered.
Helen says that for many months, she was “cocooned”, and protective of her family’s energy and soul.
When asked how Helen managed to push past her grief, in order to be there for her family, she replies candidly. “Fortunately love for one’s children brings great clarity,” Helen says, “and clarity brings strength. Constructive action kept me purposeful. I compartmentalised my grief which enabled me to stay in the present moment, to stay focused and strong.”
Helen had another release – writing. While Jayne was in a coma, Helen began penning letters to her daughter. As a way of making sense of the tragedy, and as a way of trying to reach out to her.
These letters became have now been published as A Flower Between the Cracks. The memoir is a powerful account of a mother’s love, and hope – and the beauty to be found in each day.
Helen says that she began writing because it, “gave me another way of ‘talking’ to Jayne, as if I could thwart the laws of nature and touch base with her soul.” Helen continues, “My journal was a confidante, allowing me to be totally honest, to find solace and wisdoms, to track progress and to highlight qualities and strengths.”
Writing also taught her to seek out the beauty in each day.
Jayne did eventually wake from her coma.
Helen’s relief was immeasurable. But life did not go back to the way it was before the accident.
Today, it has been 13 years since Jayne’s accident. Helen’s daughter is in her mid-thirties. Jayne has regained some speech and mobility – but she still requires around-the-clock care.
Helen has become her daughter’s full-time carer.
Although Helen no longer writes, she does say that the discipline of writing has honed her ability to nourish healthy thoughts, and to “edit out those that sabotage”.
She says that the process of writing made her “feel stronger, as if I know myself better and trust in myself more. Writing builds skills in reflecting, planning, setting goals, problem-solving and honouring the wise parts within – all wonderful stuff to incorporate in to your everyday.”
But Helen and Jayne live very different lives now. And while Helen admits there are things she misses – such as the greater choices available, and the ease of her previous life – she has changed how she sees the world.
“I live with what is barest and truest, doing simple things like going for walks with Jayne amongst nature with our camera and notepad, taking games to cafes with her or emailing Sarah who now lives in Sweden,” says Helen.
“I live in the present moment with fewer trajectories. But living slowly and simply is not all bad – both Jayne and I appreciate kindnesses, nature’s beauty, sunshine, birds, and our feelings of wellness – generally, with sufficient help and company, we live each day with gratitude.”
A Flower Between the Cracks, A Memoir of Love, Hope and Disability, is an extraordinarily powerful account of a mother’s love and a daughter’s immeasurable courage. It is a story of hope and survival, laced with surprising humour. The book is published by Affirm Press, and is available online here.