Up Until Now

by Petrea King

  Many of the riders needed assistance into the saddle, and most had never ridden a horse before. The joy on their faces was beautiful to behold as they set off to ride through the eucalypt forests. On their return an hour or so later, they would be sitting a little straighter and their faces would be deeply contented.

  Such activities were a sharp contrast to their lives at home. They returned from these weekends braver and feeling more enabled to tackle their challenges, having discovered more strengths and capabilities within themselves.

  Participants would also develop a stronger sense of community. The care that they showed to one another was always so moving—perhaps someone unwell would give up their day bed or seat to someone sicker, assist them to their feet, or fetch a cushion, a glass of water or a blanket.

  ***

  Craig was an opal miner from Lightning Ridge. He rang me from Royal Prince Alfred Hospital on a Friday afternoon as we were preparing to leave for the weekend retreat. Craig said he’d just been told by his oncologist that he had six weeks to live due to the extensive spread of his melanoma. His face and jaw were distended with the tumour, so eating was difficult and painful.

  I offered to pick him up and take him with us for the retreat. Given he didn’t have family or friends in Sydney, he accepted happily. It turned out that Craig thought all ‘poofters deserved to die’, so being a member of the retreat was quite confronting for him, but he stayed. Some of the people with HIV/AIDS were excellent cooks, and they and others prepared food for him that he could manage to eat without too much pain.

  On his return to Sydney, I arranged for Craig to move into a hospice. He wasn’t well enough to live independently, and a return to Lightning Ridge would have been unwise given its remoteness and his short prognosis. I visited him regularly in the hospice, and his mother moved in with me and my children as she knew no one in Sydney and needed a base close to her son.

  Each week, Craig travelled by taxi to attend the support groups at my home, which was close by. He found that many of the lads with HIV and AIDS were just like him—and, like him, they were all facing their mortality in their early twenties.

  After attending several weekend retreats in the ensuing months, Craig was determined to attend the next one. But, by now, his pelvis was in three separate pieces due to the melanoma’s progress through his bones. There was no way we could transport him to the Southern Highlands by car as even the short taxi ride to my home was painful and a challenge for him. However, Craig was determined to attend, as these weekend retreats were very important to him. It can be hard to find people comfortable in your presence when you’re experiencing profound pain and physical distress, and he knew he would be in good company. Black humour was often present at these gatherings, along with touching moments when anguish could be expressed, heard, witnessed and held in the hearts of those present.

  Good friends of mine, John and Mary Butters, arranged for the pilot of the AGL helicopter to transport Craig from a park near the hospice to the property where the retreat would be held south of Sydney.

  Forty people stood in a paddock waiting for Craig’s arrival. After the helicopter touched down, his friends with HIV gently lifted him into a wheelchair that they carefully carried to the main room where we would gather.

  Moments when we connect with our common humanity, leaving aside our prejudices and judgements, are profoundly healing. We see the other as our self, and we experience the love and compassion that connects us all in a deeper and more honest place beyond our usual pretences and prejudices. While curing is focused on the body, healing is about the heart and losing our sense of separateness and isolation.

  My own fragile mortality still hovered in the background of my life, though the fear of going out of remission occupied my mind far less. I expected that this would happen at some stage, but in the meantime my wonderful companions gave me courage and strength that I likewise gave them. We didn’t feel alone with our grief and concerns as we all felt we had friends for life.

  CHAPTER 26

  Difficult work

  Another wonderful activity that I instigated in the late eighties was to take people with life-threatening illnesses, dressed as clowns, to cheer up children at the Camperdown Children’s Hospital. The CLOWN Project stood for Compassion and Love Offered When Needed. Gore Hill Technical College students made beautiful costumes to fit a variety of clown sizes.

  Each week, people who were frail, people with amputations, people on crutches or in wheelchairs got dressed as clowns and visited several wards where children were seriously ill. They had many activities to share with children, including donated books and toys. The clowns’ own frailties meant they connected gently and compassionately with the kids.

  One little girl was from Indonesia with only her aunty accompanying her. No one else spoke her language. The nurses said she was withdrawn and fearful of her surroundings.

  When one of our clowns spoke Bahasa to her, her eyes were like saucers. She had never seen a clown before, let alone one speaking her language. He gently got her confidence, and it was beautiful to see her soften and relax as he told her a story in her own language. She ended up laughing with joy.

  The CLOWN Project provided such a beautiful opportunity, with both the clowns and the children benefiting from these visits. The clowns loved that they could provide comfort to children instead of being the ones perceived by others as needing support. This provided a liberation from feeling like a sick person, to feeling grateful to have helped someone else.

  ***

  Occasionally I moved in with families when a child was dying. This was particularly heartbreaking; no parent ever expects their children to predecease them. I learned so much from these children—once pain was relieved, they had an extraordinary capacity to let go of the painful parts of their journey, and then full-heartedly focus on the love and lightness they felt.

  Nine-year-old Charlie was my first great teacher in the heartrending journey of a child dying. (His story is another that I told in Sometimes Hearts Have to Break.)

  Just before I met Charlie, I was invited to work with Dr Jerry Jampolsky in Sausalito, California. Jerry is a wonderful child and adult psychiatrist who works extensively with patients of all ages living with cancer and HIV/AIDS, and in many other arenas of difficulty and conflict around the world. At the time, he conducted support groups for children and worked with visualisation and other techniques to bring them healing and peace as they journeyed towards their death.

  When I first met Charlie, I told him that I was travelling to the United States to work with Jerry in several weeks’ time. Charlie asked, ‘Why are you going?’ I explained that there might be many children like him I’d be asked to work with, and that Jerry had a lot more experience than me; I had questions I wanted to ask him, and I expected him to train me so that I could help more children. Charlie closed his eyes for a while and then said, ‘I think you’d better go and get your questions answered.’

  As the weeks progressed, it was obvious I might be in the States with Jerry when Charlie died. I had become very close to him and each member of his family.

  The day dawned when I was due to fly to the States.

  I visited Charlie on my way to the airport and, sitting by his bed while he slept, I realised I was going to America to ask Jerry all the questions to which Charlie had the answers. It would be a lot more fun to work with Jerry but, three hours before I was due to fly, I cancelled my trip and moved in with Charlie and his family.

  The next couple of weeks were incredibly hard. I had never been with anyone who experienced as much pain as Charlie. Living with his family on that difficult, raw and tender journey was unforgettable. It didn’t change the awful fact of Charlie’s death, but it changed the way the family made that unwanted and tragic journey. We made it together and have remained firm friends ever since.

  Anastasia was another child I worked with. At twelve years old, she was paralysed from the neck down. She asked her mother to l
eave us alone because she wanted to tell me something. Then she asked me to turn her head so she could look directly into my eyes. Hers were clear and sparkling. She was afraid it might upset her mother to hear her say to me, ‘Petrea, if this is dying, it feels wonderful. I feel like I’m being born into light.’

  Another girl, Jenny, was just seven years old and had a little brother of four who was an energetic handful. Jenny had her leg amputated below the knee due to an osteosarcoma. She asked her mother to take her little brother from the room so we could talk. As soon as they left, Jenny hopped over and sat on my lap. Wrapping her arms around my neck, she looked straight into my eyes and said, ‘Petrea, I know I’m dying, but who’s going to help Mummy look after my little brother?’

  These moments were full of heartbreaking poignancy, and I was amazed by the innate compassion shown by children. They also have a remarkable capacity to embrace their deaths so long as they’re given a safe and honest environment in which to ask their questions or share their insights. I didn’t need to have their answers, and I learned the value of simply saying, ‘Great question. I don’t know,’ and then offering whatever small comfort I could.

  It was such a privilege to be invited into people’s homes and lives at these profoundly difficult and painful times.

  ***

  Life was full and rewarding, with every day and evening taken up by my work and being with my children. However, while I felt deeply involved and engaged, I was also becoming exhausted. My boundaries were too elastic, and my evenings often involved phone calls with people in distress. The number of suffering people seemed unending, and my work with children could be very challenging.

  Then eight patients died, all in the same week—people whom I had come to love. There simply wasn’t sufficient time for me to take on the enormity of their loss, while also, in some cases, visiting and comforting their families or conducting their funerals.

  Through my work, I was privileged to share intimate journeys that confronted me with every judgement I could hold about myself or another. Judgement separates: that is its purpose. The heart of yoga is union, the healing of all separation so we merge with the eternal, the loving, the indestructible essence of love that lies beyond judgement and dwells within each of us. Surely no other work could have provided such an extraordinary opportunity for me to release myself from all judgement. However, I was becoming overwhelmed by grief with no end in sight. I didn’t want to just survive doing this work. I knew it was my vocation, my privilege and purpose, and I wanted to thrive and flourish through being in service to the people who came to see me.

  Around this time, one of the regular support group members, Pamela, generously gave me a set of keys to her holiday apartment in Mooloolaba, Queensland. She saw I was working virtually nonstop and becoming worn out.

  And so, while Kate stayed with my parents, I drove to Queensland and settled myself in for a good two-week rest in paradise. The Pacific Ocean sparkled invitingly in front of the unit, while the Mooloolah River flowed past smoothly on the last leg of its journey before emptying itself into the sea.

  The first night I turned on the television only to view an ABC story on AIDS in the prison system—and I dissolved into sobs. Who would be there for them?

  I couldn’t control the tears as I wept for the agonising stories I heard every day. Why does it have to hurt so much to be human? Why do parents lose their children? What’s the sense in so much pain, suffering and loss? What is the point of it all? I cried myself to sleep on the floor, only to awaken to more sobbing. I barely made it out the door during those two weeks, and I drew only small comfort from the wisdom of Kate Critchlow’s words, ‘Sometimes hearts have to break before they heal.’

  On the long drive home from Queensland, I asked myself some tough questions and came to some realisations.

  Why did I need to be needed by all the people who clamoured to see me? I was booked out six weeks ahead, and I didn’t like the tension of having to squeeze someone in who probably wouldn’t live long enough to slot neatly into my diary. I realised I had repeated an old and ingrained pattern—laid deep in my neuronal pathways and habitually activated by my subconscious—of putting others’ needs ahead of my own. This time, I had made seriously ill people more important than me from a sense of survivor guilt: their needs became more important than mine because I’d somehow cheated death.

  I also realised that I needed to find someone who would listen to me as keenly as I endeavoured to listen to everyone else. Someone who would ‘get me’ and be a regular touchstone in my work. How fortunate I was to find a fabulous psychiatrist, Phil Palmisano, on my return home. I asked for an appointment to see if Phil would be willing to provide me with supervision in my work; he kindly agreed to do this and, even more kindly, only ever bulk-billed me. Phil was a great listener, of course, but he also offered sage counsel seasoned with a wonderful sense of humour. We treasured each other’s stories, and he shared much of himself over time.

  Given my tenuous remission, we joked that he might not need to see me for too long—I then saw him every week for nine years. Tuesday morning at eleven was my dedicated time with him. Nothing was off limits in our discussions, which ranged over personal, historical, professional and current issues. As our years together unfolded, our sessions became a touchstone in my life.

  As we’d agreed, Phil and I regularly focused on my professional world, and we often discussed the importance of separating my issues from those of the people I worked with. If patients or support group members wanted to talk about suicide or euthanasia, I needed to be very clear that I wasn’t trying to rescue Brenden over and over again. I had to focus on helping to provide people with a non-judgemental space to explore their options.

  While suicide was a frequently raised topic, especially in the Albion Street groups during those early years, it was very rarely chosen in the end. Many people kept the means to end their life safely hidden somewhere easily accessible and that seemed sufficient to allay their fears. Often a support group member would claim that when he got to be thin and unwell, he would exercise his right to end his suffering—a few years later, when he became thin and unwell, peace was in his eyes and a smile was readily found upon his lips; he had found his peace and was in no rush to depart.

  ***

  During my journey home from Queensland, I also decided to drive Kate to school each morning, instead of her travelling by bus. This allowed us to spend precious time together.

  After dropping Kate off, I would walk the length of Balmoral Beach with the intention of hearing every wave come to the shore. I would then have a fresh juice and short black coffee before I saw my first patient of the day.

  Meditation was still an essential daily practice, but this exercise in mindfulness was my time. Having attended to myself, I was ready for everyone else.

  CHAPTER 27

  Broadening my horizons

  On my return home from Queensland, I wasn’t particularly surprised to find messages aplenty on my answering machine.

  However, one stood out from the general inquiries for appointments: a message from the Department of Corrective Services. When I returned the call, a woman asked if she could visit me at home to discuss ‘a matter’. I was curious and agreed.

  We sat in my lounge room with tea while she described in some detail the behaviour of the HIV-positive prisoners in Long Bay Gaol—which, at that time, was far from exemplary.

  The twelve prisoners were kept in an isolation unit within a maximum-security gaol; none of the other prisoners wanted to be anywhere near them, such was the fear of the virus. The only spasmodic contact between the two groups of prisoners were the tennis balls whacked over the walls to bring in drugs and related paraphernalia.

  The HIV-positive prisoners were being disruptive because they wanted the same services and rights that people with HIV received outside the gaol system. They had set fire to their unit and flushed clothing down the toilets to block up the system. The naughtier they
became, the more locked up they were. The more locked up they were, the naughtier they became, to the point where wardens were refusing to work in their compound. There had been one suicide. There had also been threats against the wardens of syringes filled with infected blood.

  These twelve prisoners were a relatively incompatible group in terms of their crimes, which ranged from petty theft to bank robbing, drug trafficking, rape and manslaughter. They were a mixture of IV drug users and gay men. It seemed the only thing they had in common was HIV.

  My visitor went on to ask if I would consider working with the prisoners to settle them down, with a view to then integrating them into the mainstream gaol where no one wanted them—and, if so, what my hourly charge would be.

  Well, I thought that this would certainly stretch my skills.

  I told her I couldn’t promise any success. I wasn’t a psychologist and had never worked in a gaol. But I’d be happy to do what I could to help, and my usual fee was $35 an hour. She thanked me for my time and asked me to think about it a little more deeply. She would return in a week for my answer, and she added that I might want to review the fee.

  My heart went out to these men who were in confinement at the very time when they no doubt most ached to be with loved ones. No wonder they were angry and, of course, most of them had little emotional literacy or ability to express their feelings in healthy and acceptable ways; no doubt it felt far more powerful for them to punch someone or set fire to something than to say, ‘I’m really scared I’m going to die in prison away from my family and friends.’ Working with these men would undoubtedly broaden my horizons.

  My visitor returned a week later and asked for my decision. I reiterated that I was happy to take on the challenge and my fee remained the same. She suggested a much higher hourly rate, and I graciously accepted her offer, knowing that this would help mightily given the amount of work I did on a pro bono or voluntary basis. I figured it was the universe’s way of supporting me. Little did I know this was danger money.