Up Until Now

by Petrea King

  Twelve months later, I received another card from her, this one saying that she was organising other women to read to the burns unit children.

  Bella died eighteen months after our initial consultation from a brain haemorrhage while sitting on her swing in her beloved garden. Her doctors believed that the chemotherapy had weakened her blood vessels, hence the haemorrhage. At the time of her death, she was free of cancer. Perhaps the resolution of her grief freed up the necessary energy that could more productively be utilised for her healing? Bella’s experience was not isolated. As people found greater peace in their lives, often their physical health improved. Or, if their death was the outcome, they were enabled to let go lightly of life, which helped both the patient and their family to take leave of one another lovingly.

  CHAPTER 22

  The peace that passes all understanding

  Within my first year of going into practice, I had two patients whom I thought would benefit greatly from meeting each other.

  Diane had a pituitary gland tumour that, while not malignant, affected her hormone levels and created pressure in her brain. Her doctors strongly recommended that she never have children, as the hormones involved in pregnancy were likely to exacerbate her condition to the point where it would become life-threatening. Diane was feisty and articulate, and she described her inner emotional world with clarity, insight and forthrightness.

  Josh, on the other hand, had a lymphoma, was dreadfully shy and didn’t appear to have emotions. Our appointments were peppered with long silences as he struggled to answer my questions. I wondered why he persisted in driving four hours to see me when it was clearly such a struggle for him to put his thoughts and feelings into words.

  Josh was tall, fair-haired and lanky, and as his lymphoma had progressed he’d became painfully thin except for the hard lumps that distended his neck, making it difficult for him to swallow or turn his head. This slowed his response times further, the symptom seeming to match his disposition. His prognosis was poor, and his doctors thought his remission from lymphoma was tenuous and temporary. He didn’t know how he felt about facing the end of his life, yet he was keen to be in the company of other people who lived with serious health issues.

  Like me, Josh and Diane were both in their early thirties, and they were interested in meeting each other. At our first support group, we established four guidelines to ensure that our group was a safe space in which we could utter the unutterable and feel supported and heard. The guidelines were confidentiality, attentive and active listening, non-judgement, and staying with our experience rather than our theories.

  This was the first of many support groups—the first such groups in Sydney. They were without an agenda and weren’t deliberately educational, in that we didn’t choose a topic around which to focus our discussions. A well-facilitated support group provides a non-judgemental, nurturing, supportive atmosphere that allows people to find their own best answers while others listen compassionately and, when appropriate, share their experiences.

  The four guidelines I established with Josh and Diane have never changed over the decades—they capture the essentials for hosting a safe group environment.

  ***

  In the first year of my practice, I volunteered at St Vincent’s Hospital in Darlinghurst to massage people with AIDS. Having just been through a profound illness, I couldn’t imagine how it must feel to experience that while people were too fearful to touch you—at that time, meals were left outside patients’ closed doors for them to retrieve. It took about six months to get the hospital’s administration to approve my volunteer service, as it seemed they were worried about what I would do with patients behind closed doors! I assured them that my intentions were pure.

  The first patient I massaged was just seventeen. Tony had only had two sexual encounters and was unsure if he was gay. As I massaged his body, he wept quietly, the puddle on his pillow expanding. When I asked him whether he wanted to talk, he said, ‘No one has ever touched me like that before. I’ve only ever been touched when someone wants something from me.’

  Tears filled my eyes as Tony’s story broke my heart. He had been thrown out of home at fifteen because he thought he might be gay. He was full of rage against his family and despair at their judgement and subsequent rejection of him. He refused to let them know he was sick and had no intention of telling them his prognosis or where he now lived. He’d been told to expect to die within eighteen months.

  I had recently started a support group at the Albion Street Clinic for people with HIV/AIDS, based on the four guidelines of the groups I facilitated in my clinic. I encouraged Tony to attend this group so he could safely express his feelings and gain support from other men who understood his confusion and suffering. He took my advice and became a regular member of the group for several years. Through participating in it, he found his peace and healing.

  When I visited him in hospital to say our goodbyes, I walked into the same room where we had met four years previously. His mother was massaging his feet, his father was holding his hand and his sister was reading quietly in the corner. I massaged his distended belly until he beckoned me close and, taking off his oxygen mask, whispered, ‘It’s been an honour and a privilege knowing you. Thank you for teaching me about love. These have been the best four years of my life.’

  While it is sad that Tony died at twenty-one, he died healed of everything that had ever stopped him from being at peace. Perhaps without AIDS, he and his family might never have healed their split. He had found the peace that passes all understanding—and, paradoxically, AIDS became the catalyst by which he found this deeper healing.

  When people speak of a ‘cure’, they are speaking of the body. Healing is about peace. I’ve known many people who have died healed of fear, anxiety or angst, and I’ve known others who have been cured of their disease but are still very much in need of healing.

  ***

  The support groups proved very popular and gradually increased in number to meet the demand. I was approached by a surgeon and two other health professionals interested in providing a nurturing environment for their patients, and the four of us started another support group at Waverley Hospital that ran over three months.

  Kay Moechtar and her partner, Wendie Batho, attended this group. Kay had a rapidly progressing form of advanced breast cancer at diagnosis, and she’d been told by her doctors that her life would probably be limited to a couple of years.

  She had given birth to three beautiful children who were now young teenagers, and she and Wendie raised them together along with their father, who would often visit and was considered very much a part of their family.

  Kay was a regular member of the weekly meditation and support groups, where she aired her concerns within its safe confines and explored the awful reality of leaving her children before they’d reached adulthood. She grappled with the seeming irreconcilability of giving birth to children and not staying alive to raise them to maturity. This was an agony with which I and other parents were familiar.

  Neither Kay nor I could have known it then, but our lives were inextricably woven into one fabric from our first meeting, a story that unfolds later.

  CHAPTER 23

  Stepping out

  My practice had expanded to five days a week within the first year, and I was predominantly seeing people with cancer, HIV/AIDS, motor neuron disease (MND), multiple sclerosis (MS) and other life-threatening or inhibiting illnesses. I was still enjoying my work immensely and learning every day how better to be of assistance to the courageous people who came to see me.

  My nursing studies, while incomplete, had given me a good understanding of the medical approach to treating these diseases. Usually there was no conflict between traditional medicine and my practice of naturopathy and more gentle ways of supporting health, along with my yoga and meditation teaching. Very occasionally, though, my advice would contradict the medical instructions a patient had been given, and this was always stressful for
everyone involved.

  Marilyn was a regular member of our support groups, and I saw her from time to time as a patient for dietary advice. Towards the end of her life, she was hospitalised with a bowel blockage after her ovarian cancer spread throughout her abdomen. Bowel blockages are incredibly painful, and sometimes the only resolution is surgery. However, Marilyn’s blockage resolved itself after she spent five weeks in hospital with a nasogastric tube, her bowel resting while she was fed intravenous fluids.

  Just before she was discharged, Marilyn rang me to check the dietary advice she’d been given. The dietician had told her that because she hadn’t eaten for five weeks, it was important for her to eat highly nutritious foods to rebuild her weight; the foods suggested included plenty of cheese, bread, milk smoothies and cooked eggs. I shuddered when Marilyn told me this—given the potential for her bowel to block again, filling her digestive system with constipating foods like cheese seemed ludicrous, especially as she was also on high doses of constipating pain killers. Cheese was known as ‘bung’ in World War II because of its effects.

  I gave Marilyn a very different eating regimen, then rang the dietician to let her know of my involvement and to ask why she had suggested those foods. She politely explained that Marilyn needed to build herself up physically after being without proper food for five weeks, so she had suggested highly nutritious foods accordingly.

  But when I questioned the addition of cheese and bread to Marilyn’s diet plan and suggested that these foods were likely to be highly constipating, especially given the high level of pain medication she was taking, the dietician snapped and said, ‘It doesn’t matter what she eats. She’ll be back here soon with another blockage anyway!’

  I found this attitude very distressing. Until then, I’d thought that anyone who had ever witnessed someone with a bowel blockage would do whatever possible to avoid a recurrence.

  As it turned out, Marilyn never returned to hospital and never had another bowel blockage. By introducing slippery elm powder and non-constipating foods to her diet, eaten in small amounts and often, Marilyn remained comfortably at home surrounded by her much-loved family and cats until she died there peacefully, six weeks later.

  For the most part, I offered a complementary approach rather than an alternative one, and this helped smooth the way for collaboration with the medical profession. My reputation meant that I was always welcome to visit patients in hospitals or hospices.

  ***

  While deeply grateful for the generous support of my parents—who continued to share their home with me and provide financial support—I felt ready to take on the responsibility of first purchasing a car and then creating a home for myself.

  I fluctuated between making bold decisions as if life was mine to live, then apprehension about my precarious health. I was regularly reminded through my patients that remissions can end abruptly and death often follows. The patients I found particularly challenging were those who had the same kind of leukaemia as me; sometimes these people had been in remission for months or even many years. It was always sobering to be reminded of the fragility of life.

  Taking on the financial burden of paying rent was a minor challenge, but still a concern—a third of my practice was pro bono, as I understood the ravages of illness on both bodies and bank accounts. I soon found a tiny two-bedroom flat in Waverton and decided to work from home to conserve my finances. I moved in with a knife, a fork, a doona and a pillow and slept on the floor until I could afford a bed.

  I continued to live like a tourist, seeing the world afresh while living on borrowed time, and I held no desire to accumulate possessions. But, of course, my flat needed basic furnishings. My parents loaned me a timber and marble coffee table, a desk and a chair. Ross was soon to move to the United States with his American wife, Dianne, so he generously loaned me his beautiful burgundy leather armchair and footstool, which our parents had gifted him for his twenty-first.

  These borrowed items remain with me to this day. Ross’s chair has had thousands of patients bless both it and me with their stories—and, though my remission is now sure and Ross is living in Australia, it still graces my office. I have offered to return it on several occasions, but he is content that his chair has found a home with me.

  ***

  My interactions with Leo had become more civil and then warmer as the pain of our marriage and divorce receded into our histories. Ada and Simon were visiting my flat on weekends, with Leo and I taking turns to ferry them between Sydney and Mulgoa.

  My personal life had stabilised, while my work was new, challenging and exciting—and sometimes downright scary. I found that working from home had some special benefits and just the odd risk.

  Patients preferred the relaxed and homely environment as well as the confidentiality that my flat offered. Before long, my practice wasn’t only full, I was also booked up weeks in advance with appointments. On the odd occasion, I felt vulnerable or at risk by myself with a mentally distressed or unwell patient.

  One such was Peter, whose fuller story appears in my book Sometimes Hearts Have to Break. Peter arrived at my door with a face like a thunderclap, his black satchel in hand. I felt ill at ease just walking down the hallway to my consulting room with Peter following behind. After we’d gone through the usual details of his name, address and phone number, I asked, ‘Why are you here?’

  Peter, an electrician, carefully lifted a contraption out of his satchel that he later explained was a means by which he planned to electrocute himself after overdosing on sleeping pills. He then threw the remaining contents of his satchel at me, leaping to his feet and screaming, ‘I’m fucking dying and these aren’t fucking helping me and now I have to come to a fuckwit woman, for help!’ as hundreds of pills of every size, shape and colour flew at me and across my office.

  I have no idea what possessed me, given my history with angry men, but as he collapsed back into Ross’s chair, I knelt in front of him and said, putting my hands on his knees, ‘You must be terribly frightened.’

  At this, Peter crumpled and sobbed and sobbed his heart out. All his friends and lovers were dead. His doctor was dead. He had nursed many men through their last days of dying from AIDS. Who was going to be there for him now they were all gone?

  Such were the stories that unfolded within the safe confines of Ross’s chair and my office.

  ***

  After some months, towards the end of 1986, I could afford a larger flat in nearby Waverton with fewer stairs for unwell patients to climb.

  This move meant that Ada could come and live with me. She was increasingly unhappy about living with Leo, and it broke my heart to see her so reluctant to return to him after our weekends together. Weekends just weren’t long enough—we missed the daily routines and shared experiences that living together affords. There was also a small sunroom for Simon to sleep in on his weekend visits. Our life together began with him as a frequent visitor, while occasionally Ada would go to Mulgoa for the weekend.

  Leo was happy to relinquish his care of Ada, as he was beginning to have some health issues and felt she would benefit by being closer to me. He was far more friendly to me now, probably because he could see the benefits in having me as an ally rather than treating me as the enemy. This brought greater flexibility to our discussions about the children and more collaborative solutions when we needed them.

  Given that she would now live with me, Ada asked me if she could change her name. I agreed wholeheartedly, and she happily settled down with a baby-name book. She narrowed it down to Kate, Clare or Helen, settling upon Kate. I don’t think any of us ever slipped by calling her Ada again! It was a delight—she finally had a name that she—and everyone except Leo—felt happy about. After about three months, she said, ‘The thing is Mum, if you’re really a “Kate” then you just can’t be an “Ada”,’ and I understood exactly what she meant.

  I approached Queenwood Girls School, where I’d attended for a year, and pleaded with them to take Kate i
n Year 6 so she wouldn’t have to change schools again between primary and high school. She had already attended several schools, and I was keen for her education to be completed in one. My parents generously paid her school fees.

  Kate left for school at seven-thirty in the morning, so I saw my first client of the day as soon as she went and would consult with patients until about seven in the evening. After school, Kate would focus on her homework, and then the two of us ate dinner together. I relished the ease of living with my daughter after such a long time, and Simon’s presence on alternate weekends was a delightful bonus.

  ***

  My practice continued to increase until I was booked out six weeks ahead. People kept calling to say that they’d been told they only had four weeks to live, so I would see them on weekends. This was also when I visited people in their homes, hospitals or hospices if they were too sick to travel.

  There was no time for life outside of being a parent, and I wanted to raise my children for as long as was possible while doing what I could to be of service to people who came to me for assistance.

  It had been liberating to simplify my life down to the bare essentials, but I’d come a long way since my possessions fitted in hand luggage. I had gradually accumulated a fulfilling career, more contact with my kids and everything I needed to support family life. I’d even bought one piece of furniture that was more symbolic than essential.

  While I didn’t need a beautiful antique Japanese blanket box, it felt like an investment in a future—meaning that my confidence in my future was growing. I loved that the box had a long history and no doubt a tale to match; now we would have a shared story. It took pride of place for a while and still sits in my living room.