Up Until Now

by Petrea King

  One surgeon told me that not only did my leg need straightening immediately, but I also needed a knee replacement. He could do both at the same time. This was more than I was expecting, and when he insisted on my having another bone biopsy first, I was confused. Bone biopsies are not fun: I’d had two, one from my sternum and another from my pelvis, and they were very painful. When I asked him why, he simply said, ‘We need to establish a new prognosis for your leukaemia.’ When I looked puzzled, he continued, ‘There’s no point in giving you a new knee if you’re only going to get a few years’ wear out of it.’ I didn’t feel we’d be a good fit, so I continued my search for a surgeon I could work with.

  I liked Jim O’Brien the moment I met him. I explained my long and complex history, and he respected and listened to my story. He believed I had somehow transmuted pain signals into ‘ants’. When the ants became unbearably uncomfortable, pain medication certainly helped me to sleep and function.

  Jim told me that the structural issues would need surgery because once the line of alignment is outside the body, gravity will ensure it progresses rapidly towards collapse. We decided against a knee replacement.

  The surgery involved a third tibial osteotomy. But instead of rotating the lower leg as John had done twice before, Jim took a wedge from the outside of the tibia to collapse the bowing into a straighter line, and then the bones were screwed into place.

  ***

  Before this surgery, I needed all the usual blood tests and X-rays. When I visited my GP to get the results, they were all fine—except for the HIV result, which hadn’t been finalised. The GP said he would chase it up, and I rang the next week for the results. They still weren’t back from the pathology lab, so they assured me again that they would chase them up. A third phone call the following week finally stimulated action.

  The night before the surgery was scheduled, thirty people were in my sunroom waiting for the evening meditation class to begin, when the phone rang. It was the GP.

  He started by saying, ‘Are you sitting down?’

  If ever you have heard the ‘serious doctor voice’ then you surely recognise it.

  The GP went on to say, ‘I’m terribly sorry, but your HIV test has come back positive.’ He knew I had worked with prisoners and hundreds of other men, women and children with HIV. His first suggestion was that he would send someone immediately to collect more blood. I asked him to wait until after the meditation class, and he arranged for a nurse to arrive at 9.30 when the group had dispersed.

  Around this time, there was media coverage about the possibility that some strains of the virus could pass directly through the skin and cause infection. I had certainly had the blood, sweat and tears of dozens of infected people on my skin. In the space of the two-minute conversation with the GP, I considered the fact that Simon had been having a lot of mouth ulcers recently. The question loomed, ‘Have I already passed the virus on to my son?’

  As for me, by the time I was off the phone I had adjusted to the possibility that I was infected. ‘If I need to deal with HIV, so be it.’ I’ve had several shocks throughout my life, and I must give credit to the power of meditation to help me remain calm and present, but even I was surprised by how quickly I adjusted to this news.

  Generally, there’s meant to be counselling before and after the provision of a positive diagnosis of HIV, so people have time to come to terms with it. The diagnosis is never meant to be given over the telephone—I’ve known of people who committed suicide on finding out they were HIV-positive. And while HIV testing is meant to be conducted under an anonymous coded system to protect a person’s confidentiality, it later turned out that my name had been on the blood sample throughout the testing procedure.

  When my secretary arrived and I told her the news, she was more traumatised than me. I poured her a Scotch and went into the sunroom to teach meditation. As I entered the room, everyone smiled at me. I had the weirdest sensation, as if I had the letters ‘HIV’ written across my forehead. I’d heard many people with the virus say this over the years; it was as if everyone could see their shame. I reassured myself that I was probably a bit in shock after all, and I began to teach the class. ‘Relax your ankles,’ I’d say, then think, I wonder if they’ll still come for meditation once they know I have the virus. ‘Feel your thighs soften and spread against the chair,’ I’d say, then think, Will they still hug me when they know? And so the class passed.

  The nurse dutifully arrived later that evening and took more blood. I’d phoned a friend who was an AIDS specialist as soon as the meditation class dispersed, and he assured me that he would follow through on the rapid processing of the second blood test. He also reassured me that the first sample could easily have tipped off a false positive because of strange proteins in my blood after leukaemia.

  I also called the nearby hospital where I was due to have the tibial osteotomy the following morning. My surgery was postponed until the results were certain. Orthopaedic surgery is a messy business, and if a person is infected with HIV or Hepatitis C then safety precautions for theatre staff are significantly increased.

  ***

  Given I had scheduled a week off from work for the surgery and there was nothing in my diary, Rae and I spent a few days away together until the results were known and the surgery could be rescheduled.

  My friend called me the following morning to assure me that my HIV test was negative—and that when the original sample had gone through a more definitive test, it had also ruled out my being HIV-positive. He believed that because the phial of blood had remained in the GP’s refrigerator for three weeks before being tested, this was enough to have tipped off the original false positive.

  The GP was mortified that he’d given me the information over the phone, that my name had been on the phial throughout the entire testing process, and that they had been more than tardy in getting the original sample tested. I’m sure that everyone involved thought I would sue them for these breaches of protocol.

  While I wasn’t concerned about financial gain, I was keen to ensure that no one else would have this experience—most people wouldn’t adapt as quickly as I had. I decided to contact the Medical Complaints Unit so the whole sequence of events and breaches could be properly investigated. There was a thorough review of the case, and both the clinic and the pathology company were required to make several changes to their collection processes so that my experience couldn’t be repeated.

  ***

  I went ahead with the tibial osteotomy the following week. To my surprise, the pain was considerable and unrelenting after the surgery: my whole leg, from the hip down, was agonisingly painful. The fact I was experiencing more pain than the staff thought I ‘should’ was upsetting to me, as I too felt that I should be managing better. After all, I was meant to be some sort of ‘expert’ on managing pain.

  However, I couldn’t help still being desperate for the fourth hourly medication. And, after ten days post-op, the pain wasn’t abating. The old and familiar pattern of not wanting to be a bother still ran deep: I was being a ‘good’ patient by not causing anyone a problem and only speaking up when the next pain relief was due.

  At 2 am I rang the buzzer to request the next scheduled round. When the nurse came, she asked if I could wait awhile as she had several post-op patients in need of attention. Of course, I said that this wouldn’t be a problem. But an hour later when she hadn’t returned, I was whimpering with the pain and felt again like a little kid who couldn’t make her needs known.

  It wasn’t until I was reduced to this vulnerable state that I realised the pain was from sciatica rather than the osteotomy. When the nurse did finally return, she found me crying with pain. I was then able to explain the situation. Her response was, ‘No wonder you’re in pain!’ Once alerted, the nurses organised physiotherapy to relieve the pain, and things began to improve.

  It was during this hospitalisation that I had a panic attack. Confined to my bed, trapped in my pain-ridden body inside a her
metically sealed room, I felt claustrophobic and overwhelmed by the lack of fresh air. One of the night nurses kindly wheeled my bed to an outside atrium where I gulped in the delicious coolness of the real, unconditioned air and savoured the blissful touch of a breeze on my skin.

  CHAPTER 31

  Who’d have thought?

  1992

  While I was still recovering from my tibial osteotomy, I reconnected with Wendie Batho at a lecture by a Tibetan monk, my friend Sogyal Rinpoche, in Sydney’s Town Hall. I had recently launched Sogyal’s Tibetan Book of Living and Dying, and he had returned to Sydney for a series of lectures.

  Wendie’s partner Kay had died earlier that year. Like many of my patients, Kay had become a dear friend, and while I didn’t know Wendie very well, I had visited them at home a couple of times and knew their three beautiful teenage children. The whole family always struck me as being very loving and close, as indeed they were.

  After Sogyal’s lecture, Wendie asked if she could thank me for the care I had extended to Kay and the family by taking me to dinner.

  I rarely socialised with family members after a patient died. I knew so many people living at the edge of life, and I had little time for socialising. Family members often continued to attend the support and meditation groups, and I usually attended the funeral of their loved one; indeed, I conducted dozens of funerals myself. But I was reluctant to socialise.

  This time, though, something moved me to say yes. We made the arrangement for a few weeks later when I would be out of the leg brace though still on crutches.

  Wendie picked me up, as I was unable to drive, and we had a wonderful evening. She understood my life because she had often been in my home for the support or meditation groups, and she and Kay had attended several weekend retreats with me in the Southern Highlands. She was still living with the tumult of grief and the exhaustion of caring for someone she loved deeply. Our conversation was peppered with laughter and tears, and we formed an instant bond of friendship. For the first time, I felt I was with someone who truly ‘got’ me.

  As a way of thanking me, because she knew about my love of music, Wendie offered me season tickets to the opera. She also wanted to give me a weekend away in Terrigal. I was touched by her consideration, given she knew how busy I was.

  Neither of us could have predicted that by the time this precious weekend in Terrigal eventuated, we would be a couple. Our weekend away became a celebration of the deepening love between us.

  ***

  It’s a great blessing to be with someone who gets you. While many people wondered at the long hours I spent with unwell people, Wendie understood my motivations and passion for the work I felt was my purpose. She too had worked with considerable passion in education, which was her vocation as well as her career.

  Wendie had spent the early part of her adult life working as head of a girls’ school in Keravat, New Guinea, after performing what she called a ‘family-ectomy’. Her upbringing wasn’t a happy one: she was raised mainly by grandparents who, long before her, had done a particularly abysmal job of raising her father. As she was shunted between relatives living in Greenacre, Rose Bay and Palm Beach, much of her childhood was quite solitary against plush and not-so-plush backgrounds. Wendie had adapted to the shifting circumstances of wealth and human frailties that surrounded her.

  It had never occurred to me to love a woman, but loving Wendie was natural and easy. Those of us lucky enough to know her, let alone be loved by her, find a fiercely loyal, funny, intelligent character who embraces life with gusto. Some people find her manner too direct, as she lacks my natural hesitation to deliver difficult news. But I have learned so much from her in this regard because she has often accused me, quite rightly, that when I need to give difficult feedback to someone, they are likely to leave our meeting with a pay rise and a pat on the back.

  Like me, Wendie does what it takes to bring her dreams to fruition, and when we fell in love we thought we’d be mad not to give our relationship a go.

  I had never fancied people because of their physical bodies. I was always more interested in what lay behind appearances and knew from an early age that facades could be deceptive—after all, I was an expert at cultivating them.

  ***

  Wendie had only been volunteering for a few weeks at the Quest for Life Foundation before she surprised me with a comment. We were in the room where my books and meditation tapes were stored when she said to me, ‘You know, Petrea, you might not die, and you don’t actually have a life.’

  Wendie has a wonderful ability to articulate what many people think but would never utter out loud. Her words came as a shock, but she’d just recognised, long before I did, that I didn’t have any life outside of my work except for parental responsibilities.

  On reflection, I saw that my dedication to easing the suffering of others was fuelled by an urgency to do as much as I could before I died. My principle focus was to be here to see my children educated and manage on their own without me, and to do the work that felt both challenging and rewarding.

  Wendie’s comments opened the discussion about how we might create a life together. Some of her friends were concerned that she was repeating a pattern because she was with someone who might also die. Other friends secretly—and not so secretly—thought that she had shifted her feelings from grief to falling in love with me as her counsellor. However, I’d never been her counsellor and that wasn’t the nature of our relationship. We just loved each other with a deep and unshakeable love which, like a good vintage, has matured and increased with age.

  Wendie wept daily during our first two years together, because loving someone doesn’t preclude grieving another love. I respected Wendie’s grief. I’d known Kay well, and a person’s grief is testament to the depth of their love.

  Kay’s children knew she had loved me, and they welcomed me into their family. They were happy that Wendie had found someone to love, as she is a woman with a great deal of it to give, and I count myself extremely fortunate to be the beneficiary of such unbounding support and care. Kay’s children, and now their children, are as much loved as my own, and we feel so lucky to have been woven together into one delightful fabric of our extended family.

  One of the many things I admire about Wendie is her tremendous capacity to love other people’s children. She’d cared for—and along with Kay, paid for—the education and raising of Kay’s three children, and she loved them as her own. Wendie then took on the love and care of Kate and Simon. Between the two of us, we now have eight grandchildren, all of whom we adore.

  ***

  At first, my love for Wendie came as quite a shock not only to myself but also—and especially—to my parents and children.

  Kate didn’t initially take to Wendie’s presence in our home given, as she rightly said, ‘My mother turned into a lesbian just before my HSC!’

  Before long, though, both children grew very fond of Wendie and confided in her many things they wouldn’t dare tell me.

  Simon was particularly happy when she pulled him aside for a private chat about the fact she was, at the time, a school principal. He had never been interested in his schooling and really, as Wendie said, ‘It is rather expensive childminding.’ He is an extremely bright and intelligent person but, like me, he found school tedious and his interests lay elsewhere. My falling in love with a school principal had been daunting for him, so he was mightily relieved when Wendie told him she would never mention school to him unless he raised the subject. From then on, they were great friends.

  When I told Ross about my love for Wendie, his immediate and heartfelt response was delight. He was unreservedly happy that I had found someone to love and who loved me in return. The fact I loved a woman was neither here nor there for him, and he shared my happiness with his lovely wife, Dianne.

  But Geoff wasn’t happy about my relationship with a woman. In fact, he immediately resigned from the board of the Quest for Life Foundation. He was always concerned about how
things appeared to others; at that time, he still put public appearances before family and couldn’t bear to have any association with something that might bring criticism or judgement. The fact that I was a 42-year-old woman free to make my own decisions was irrelevant. While Rae accepted our relationship without fanfare and was supportive, she had little influence over Geoff ’s entrenched views.

  Geoff summoned me to my parents’ penthouse in Mosman for a meeting. When I arrived, the atmosphere was more than frosty. Rae was out of sight in another part of the house, while Geoff sat in the lounge room, ostensibly reading a magazine. He didn’t put it down when I arrived, so I sat and waited until he was ready to speak. Finally, he put it aside and said, ‘I cannot believe you have a woman sleeping in your home under the same roof as your children.’ An awkward silence followed, until I said, ‘I’m sorry you feel that way, Geoff, but Wendie is a wonderful person and I love her.’ My words did nothing to assuage his anger. All he said was, ‘Well, I’m appalled you’ve made this choice.’ And that was the end of our conversation—Geoff once more picked up the magazine and buried his head in its shaking pages.

  I called Ross, who was living in the States at the time, and described the difficulty that Geoff was having in coming to terms with Wendie’s and my love for each other. Ross called Geoff and underlined to him the importance of this loving relationship, arguing that it was something to celebrate.

  To his great credit and unbeknown to me, a few days later my father telephoned Wendie and invited her to lunch. She was extremely apprehensive about this meeting, knowing of Geoff ’s strong disapproval. But she arrived at their home dressed in her finest silk suit, complete with stockings and high heels, and with an armful of irises, as she knew they were Rae’s favourite flower.

  My father greeted her rather formally at the door, and the three of them drove down in relative silence to the Spit, where they settled at their table overlooking Middle Harbour. Wendie nervously waited while the pleasantries were attended to—Geoff ordering a Scotch, Rae a brandy and dry, and Wendie a mineral water! Anyone who knows Wendie would laugh at that, because of her fondness for wine, but she was on her very best behaviour.