PCP, while very common, is both dangerous and frightening and the patient is made to sit in an upright position with an oxygen mask attached, feeding him almost pure, humidified oxygen. The persistent cough which warns of the approach of the condition invariably makes it almost impossible to sleep and the oxygen dries out the mucosa of the nose and the mouth, which is very uncomfortable. Added to all this, the treatment was high-dose cotrimoxazole which can cause acute nausea and vomiting.
Almost the only thing we could do to comfort poor, miserable, old Damon was to pop little round marbles of ice into his mouth for him to suck; these helped a little to alleviate the discomfort caused by the oxygen.
We were extremely lucky that Prince Henry was prepared to take Damon through the worst of his infection; this is a dirty job which carries with it a great deal of despair, yet Rick Osborne and the other nurses at Marks Pavilion did their best to see that Damon was always comfortable and, when things went suddenly and disastrously wrong for him, never left him stranded for more than a few moments.
What I am going to say next has no medical foundation whatsoever and certainly has no endorsement from the medical profession. When Damon returned to Bondi from hospital, though his bowel movements were still unpredictable, they occurred less often and it was thought they could be reasonably managed with home care. The idea that he would never be able to move more than a few metres from a toilet, bedpan or commode was almost impossible to grasp and Damon was devastated by this. It meant, in effect, that he was more or less condemned to remain at home, never able to set foot in public without wearing incontinence pads which can be worn, though somewhat conspicuously, under clothing. Knowing that at any moment and without warning you could shit your pants in public is a kind of emotional death sentence.
I called Ross Penman, a friend who is a well-known acupuncturist, and explained to him what was wrong and asked him if he thought there would be any point in treating Damon. Quite why I did this I can’t say; it must have just seemed like a good idea at the time or, perhaps, because Ross’s services had been volunteered to me by the always caring and over-generous Ann Cameron, a top Sydney model and Ross’s beautiful partner. I made contact with Ross in the hope that he might be able to help. With AIDS so many things happen so often and so fast that, after a while, you find yourself clutching at straws.
Ross Penman is a responsible and careful man and admitted he didn’t know if he could help, but added that acupuncture was traditionally effective with some bowel conditions. He agreed to attempt to treat Damon and did so for two weeks, making daily visits from across the Bridge. In this period, the diarrhoea cleared up and it was never to return in the form of cryptos-poridiosis again.
Damon seemed to be recovering slowly from his latest bout of PCP, though he was never far from the oxygen mask, when he was struck by a condition called cyclo-megalovirus gastritis (CMV). Whilst it is entirely unimportant to know, the drug used to treat it is called by the unspellable name of dihydroxypropoxymethylguanine which is the only amusing part of this infection. CMV is an acute and very painful gastric condition and the diarrhoea was back with a vengeance.
Damon was very sick and we were all beginning to wonder whether he could take much more, whether this attack or the next would be the last. Only Celeste was convinced that Damon wouldn’t die. It wasn’t simply hopeful thinking on her part; she genuinely believed that the mighty Damon could pull through anything and that one day, despite all the evidence to the contrary, Damon would beat AIDS and get better.
An incident occurred while Damon was recovering which showed that, underneath all his misery and pain, Damon was still being himself. A young street prostitute was admitted to Marks Pavilion for a rest and a series of tests. Damon immediately befriended her and realised that she needed to be taken in hand. He was not yet over his mania and decided, with some considerable encouragement from the young lady, that she had all the makings of a model and an actress.
Rick Osborne, who has great experience as a psychiatric nurse and who, despite objections from other staff members, had personally fought to keep Damon at Marks Pavilion when he came out of Rozelle Psychiatric Hospital, was concerned for Damon’s welfare. The staff at Marks Pavilion were all aware that the young lady was a notorious and practised liar and a troublemaker and Rick knew that Damon, in his present state, was no match for her guile. She was in the early stages of AIDS and used the hospital whenever she felt she wanted a rest from prostitution (who would blame her?), a profession which, despite the warnings and pleas of Dr Phil Jones, the medical director of the AIDS unit, she continued to practise.
She was a pretty young creature who claimed to be seventeen, a street kid who’d run away from home at the age of eleven and who’d done it tough all her life; she was also a heroin addict who most probably contracted HIV through sharing a needle, or, perhaps, from her pimp who had advanced AIDS. She was now on a program of methadone.
Rick, who’d been off duty for the couple of days during which the young lady had been admitted to Marks Pavilion, was waiting for me when I arrived after work to see Damon. He immediately asked me if I knew about Damon’s interest in the young prostitute. I admitted that Damon had talked about her the previous evening.
“Please, Bryce, don’t have anything to do with her. She’s bad news!” Rick, a gentle and kind person, looked slightly embarrassed. “It’s not because of what she is, God knows I don’t care about things like that, it’s just that she can do some real damage to Damon’s fragile state of mind. Celeste is terribly upset and, of course, Damon won’t listen to her; he thinks her anger and frustration is a woman to woman thing!” He looked at me directly. “Bryce, I’m a qualified psychiatric nurse. Damon’s family and Celeste, in particular, are his only real link to reality. This person must not come between you.”
I was immediately worried, Damon having already spoken to me about the young woman, asking me to help her to obtain a model test, and I’d agreed that I’d see her that very evening. I told Rick about this and asked his advice.
“Tell her you can’t help her. Don’t worry about her ego, she’s got a hide like a rhino. I’ve already told her about Damon’s mania.” He looked suddenly apologetic. “I hope you don’t mind?”
“No, no,” I said, frowning.
“She thinks it’s funny, a great joke,” Rick added.
“I’ll tell her there’s nothing I can do,” I promised.
But it wasn’t quite as easy as this. When I got into Damon’s room the young woman was seated beside his bed holding his hand. “Dad this is Tracey,” he said excitedly. “Tracey, say hello to my dad.”
Tracey, still holding Damon’s hand, extended her free hand and smiled. She had a nice open smile and except for perhaps a bit too much make-up, she looked like any pretty seventeen-year-old.
“Pleased ter meetcha,” she said in a cheeky and friendly voice; it was hard not to like her immediately. I took her hand, not looking at her directly, and noticed that her nail varnish needed attention.
“Dad, Tracey’s had a bit of a hard time, but she’s okay now. She wants to be a model and an actress.” Damon appealed to me with his soft eyes, “You can help her can’t you, Dad?”
“Well, er…”
Tracey released Damon’s hand and jumped from her chair and took a couple of steps back from the bed so that I could see her figure. She had a nicely proportioned body and she stood with her hands on her hips, one leg forward, her toe pointed and just touching the ground, her left shoulder thrust towards me in what she took for a model pose. “What d’ya reckon, Mr Cour-tenay?” Her voice was filled with infectious laughter and she dropped her eyes, giving me an imperious and haughty look through her dark eyelashes. In a less shitty world she might have made it; in this one, Tracey’s life was all but over, bar the pain and the awful despair to come. I wanted to weep, but instead I smiled (What a weak shit I am!), “We’ll talk about it later, I’ll see you on my way out,” I said.
Tracey smiled
and did a little curtsy, blew a kiss at Damon and left the room.
I don’t recall exactly what I said to her. I tried to be kind except, of course, that what I meant was that I couldn’t or more specifically, wouldn’t help her. I remember her reply, which I had coming to me I guess and which showed she hadn’t entirely lost her self-esteem.
She looked up at me and said in an angry voice, “Why don’t you just do me a favour and fuck off!" Tracey checked herself out the following day. She’d gone in to say goodbye to Damon and found him asleep with the oxygen mask over his face. I guess she reckoned we owed her something anyway, so she took his Ray-Bans and his Walkman.
Damon came off Lithium in July and his disposition improved markedly. Though still very sick and frequently in hospital, his determination to get better again returned. He even seemed to put on a little weight. But AIDS is remorseless and in mid August he developed Herpes zoster.
Herpes zoster is better known to most people as shingles. If you’ve ever had the misfortune to have just one bad cold sore, you’ll know how very painful it is; it attacks the nerve ends closest to the skin and the pain is unrelenting. Damon developed one hundred and eighty shingles below his knees on the inside of both legs, on the soft parts of his insteps, on the edges of the pads of his feet and between his toes. Without morphine, the pain might well have killed him; even with it, it remained severe, the pain slicing through the six-hourly morphine mask.
When the afflictions which continued to beset Damon didn’t fill me with despair, I marvelled at the capacity of the human body to take the kind of punishment, the remorseless onslaught, AIDS delivers to it. How Damon was able to survive was a mystery; why he continued to want life to continue was even more bewildering. I am aware that the need to live in all of us is a tenacious instinct, I know this, yet how could this horror be seen to be living? There seemed to be no quality of life left for my son, who trudged through one severe affliction into another, his pain never ending. Surely, in the same situation, I would quietly take a handful of pills and end it all? Where did his strength come from? Was it love? Was he simply going along with Celeste who still believed, believed with all her soul, that Damon was going to make it? Was love this purposeful?
I hated myself for thinking like this, but I loved him so terribly and he wasn’t going to get better and I couldn’t bear to see him suffering the way he was. Later, I would have to face the actual prospect of putting him permanently to sleep and I was to find an ambivalence in me which made a mockery of these earlier emotions. I had requested that, if Damon had a heart attack, a common enough way for people with AIDS to die, the resuscitation unit not be used. But as Damon grew closer to the end I wanted to hang on to him, we all did, we wanted to postpone the moment and have him with us a little longer. If this seems unnatural, for we loved him so terribly we didn’t want him to suffer, I can’t explain.
The Herpes zoster was only to leave him shortly before he died. Treated with high-dose acyclovir, called Zovirax, and a locally applied anaesthetic, named Xylo-caine, and bathed daily by Celeste in a saline solution in an attempt to dry out the blisters, his pain was somewhat reduced. Given the state of Damon’s health, it came as an enormous surprise when Benita told me Damon wanted to go to Europe.
“That’s bloody ridiculous, he’s dying!” Taken by surprise, it was the first time I’d said it out aloud and Benita immediately burst into tears.
“He’s missing Adam terribly. Adam wrote to him and suggested he and Celeste take him around Europe. Adam’s got holidays coming up,” she sobbed.
“Adam had no right suggesting such a trip! And you’re telling me Damon believes he can make this trip? What does Celeste think?”
Benita, teary-eyed but in control, replied, “She says whatever Damon wants. If Damon says he can do it then he probably can.”
“Christ! That’s helpful. What if he dies while he’s away?”
Benita burst into a fresh bout of tears, “Well, at least he’ll have seen all those places! If it gets really bad, you and Brett can come over or we’ll come back.”
“I’ll have to talk to Damon, make certain he knows what the bloody hell he’s doing,” I said, exasperated. “And to Phil Jones at the hospital and to Brent Waters.”
I felt under a great deal of pressure. There was nothing I would deny Damon, but he was so recently out of his mania that I still didn’t fully trust his mind. He’d had one illness after another; how would he be treated in a foreign land, in a place where we knew no one and struggled to speak the language? Admittedly they would only go to the UK, France and Italy. Adam spoke fluent French and Benita a little Italian, but Damon spoke neither of these languages. It was taking a huge chance, tempting fate, and I wasn’t at all certain that we should be doing so.
Dr Phil Jones of the AIDS unit appeared initially astonished at the suggestion but, after thinking about it, agreed that it might be possible. Phil Jones is a generous and open-hearted man who genuinely liked Damon. He thought for a while and then said, “Sometimes these things hold them together, give them a reason for continuing. It could be a good thing for Damon.” Then he added, almost as though it was an unnecessary afterthought, “Of course, you do understand what could happen, don’t you?” Brent Waters, as always, kept it simple, “If it doesn’t concern him, where Damon dies is unimportant as long as you’re all there with him. It’s a helluva stupid idea, but it’s worth it.”
It was decided that Adam and Celeste would take him through France and most of Italy. Benita would meet them in Rome for the final part of the Italian leg and then return with them to London, where she would show Damon London and its wonderful feast of intellectual and visual treasures, a task few people in the world are better equipped to do than my wife.
I was working and, at the same time, trying to complete Tandia, my second novel, which was several months overdue and my London publisher and editor were growing anxious. It would have been impossible for me to accompany them and, with some private trepidation, I called Qantas and told them that I might need to fly out at very short notice, explaining the reasons to them. Then I did the same for Malaysian Airlines so that Brett and his wife, Ann, could fly out of Kuala Lumpur if a crisis should occur with Damon in Europe. Brett had gone into advertising after leaving university and was working as an account director in the BSB agency, Malaysia. Adam, upon leaving university, had trained as a journalist and was now working in London on a magazine in the Financial Times Group. Both airlines promised they would have us on board on the first flight to London after notifying them.
But before Benita, Celeste and Damon could leave, Damon was to face another huge crisis when, overnight, he was rushed into hospital with severe cramping in his bowel. At first the hospital wasn’t even terribly sure what had happened. It seemed that an organism living in the wall of his bowel went out of control and caused a gas exchange which blew up the bowel walls. The gaseous mixture was unable to escape which meant simply that, if it were allowed to continue, the bowel would burst and Damon would almost certainly die. The problem was finally diagnosed as Pneumatosis coli, which I think simply means gas in the walls of the bowel.
Phil Jones, his doctor, was faced with an enormous dilemma. If he left the rapidly expanding bowel Damon would die; if he removed it, as a haemophiliac, Damon might bleed to death in the operation or, in his present state of health, the trauma might kill him. Even if Damon lived he would wear a colostomy bag for the remainder of his life.
It was certain death versus probable death and Phil Jones had no more than a few hours to act. He ordered nil-by-mouth and alerted the Blood Bank that he would need all the blood they could possibly scrounge overnight in New South Wales. The operation could wait no more than a few hours. In fact they would need to operate by mid morning the following day.
During the night Damon suffered terrible pain and we knew he was in great danger. Just before dawn he opened his eyes and declared the bowel pain was largely gone. Phil Jones and the specialist with h
im arrived early and examined Damon. His bowel condition was back to normal, the gas had subsided and all was well again. Well in a manner of speaking, anyway. It seemed the mighty Damon was going on the Grand Tour after all.
The latest problem, even though it had been over so fast, seemed to affect Damon’s confidence and he became worried about going away. Twice he went to see Brent Waters, who noted his anxiety. In a call to me he said, “If he doesn’t want to go, even at the last moment, don’t try to persuade him; he’s coming to terms with the possible consequences and he’s not sure he wants to take the chance.”
I thought I knew what Brent meant. Damon didn’t want to die away from home. But, in this, we were both wrong. Quite recently I came across two paragraphs on his computer which somehow I’d missed and where he talks about going on the trip.
“At the moment, touch wood, I am comparatively well and am taking the opportunity to go overseas, to France, Italy and England. It is a daunting prospect and I am quite frightened, but in actual fact I see it as a great turning point in my life. For so long now I have been dependent on other people, and although I will be travelling with Celeste and my brother and my mother, there are still going to be times when I have to take things into my own hands. I have not had to do that for a long time and it is a daunting and frightening prospect. In fact, I have developed quite a negative attitude to the whole trip, because the prospect of having to take control actually scares me. On top of this I am of course worried that I may get ill over there, and although I know the medical facilities in those countries are of the highest quality, to leave my medical ‘safety net’ is in itself a great worry.
“The problem, however, compounds itself: the more negative feelings I develop, the more likely I am to get ill and so I must try to stop. I am a great believer that the mind and the body are in fact not separate identities at all and that one’s psychological feelings have a great effect on one’s physical health.”
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