After a while John seemed to be wanting to get his oxygen mask off but he couldn’t seem to raise his free hand, getting it as far as his chest before it fell back to his side again. Damon leaned over and removed it and John lay panting, gasping for breath. “They…they…wouldn’t even touch me!” A great moan rose up from his inside and then he started to cough and sort of choke and Damon held the oxygen mask over his mouth so he could breathe again.
Damon turned to me. “Dad, I told him that you’d be coming tonight, that you’d hug him, that you’d be his dad as much as he wanted.” Damon looked up at me, his eyes swollen from crying. Suddenly he buried his head into my chest. “But you got here too late,” he sobbed.
Twenty-four
When Home is a Lifesaver at Bondi Beach.
The thing about AIDS is its constant bombardment of the human body. A healthy human being may be likened to a country protected by its own army and well able to keep its borders safe from invasion. When HIV infiltrates, it is like a mole in a spy story, the virus lies dormant waiting for some incident to trigger it into action. While nobody knows what this silent signal is, it allows the alien HIV to subvert and neutralise the body’s armed forces – the T-cells – until the country can no longer defend itself.
When this happens the mole comes out into the open as Acquired Immune Deficiency Syndrome. The entire human body now becomes an invasion zone, helpless against the weapons of invading infections, which have been waiting for an opportune moment. Man-made drugs are all that is left to fight the onslaught, but with no natural forces within the body to help them, drugs mostly have a temporary effect. They win a skirmish here and a minor battle there, but can do very little to halt the remorseless invasion of new diseases entering the body.
These battalions of infectious diseases lurk on the fringes of all human existence. They are microbes which are completely alien to the normal health-protected human body but now are given free access for attack by AIDS. When one type is defeated then another takes its place. The number of these diseases is seemingly without end and attacks are sudden and ferocious, each capable of creating a firestorm that leaves the area it attacks totally devastated.
So much happens to a human body when it can’t fight back that it would be almost impossible to talk about each physical onslaught, each wave, each disaster as it struck Damon’s frail and undefended body.
The Candida or thrush came early and stayed and built and built; the thick gelatinous substance caked his lips and grew inward, on the inside of his ravaged body, over the lining of his mouth, throat and gut – a deadly yellow fungus helping to undermine him from the inside out.
Damon left hospital after his bout of AIDS-related pneumonia and we noted, with an awful anxiety, that he’d developed a shuffle, the hunched-over walk of the very old and the very sick. His skin was stretched taut across his face and at times, where the once-plump padding of rude health had been wasted away, you could see the outline of the bony skull. His hairline had receded and thinned and his nice, soft, sticky-out hair now seemed patchy and unsubstantial, like a badly executed haircut, as if it were the result of an end-of-term dormitory prank.
Damon too had come to see himself differently. While he was still the kid who walked to the beat of a different drum, he now became aware that, despite his need to be different, he’d joined others who were different too, and with whom he had embarked on a Kafka-esque nightmare, a forced march into an uncertain and precarious future. No disease is so vilified. A terminally ill cancer patient is given love, compassion and caring by a generous society. No such blessing is afforded the victim of AIDS, who often suffers rejection and loathing all the way to the grave. AIDS is the first disease in modern times which society has pronounced unclean, as though a sin against God, and the journey to its end has become long and lonely and dreadful.
The incident with John Baker’s parents and John’s subsequent death affected Damon deeply. Sometimes Celeste would find him seated quietly with tears running down his cheeks. He’d look up at her and sniff and give her a wan smile. “It’s not for me, babe, I know I’m loved. I’m crying for John Baker. Do you think, wherever he is, he’s all right?”
Damon, who’d always thought of himself as an agnostic, was beginning to mention the possibility of something after death. He’d brought it up once or twice with me and, again, with Benita and, of course, with Celeste, who brought him the most comfort. She believed simply and easily that the human spirit is on a continuous journey; that life on the blue planet is only one of many. Her catechism required no deep indoctrination, it was direct and perfect: life is a river, eternal, ongoing and constant, moving through an ever-changing landscape. Damon’s present view, his life on this earth, is simply the landscape passed in his spiritual flowing.
The questions he was beginning to ask seemed to be an indication that Damon’s positive outlook to his disease was starting to be undermined and that he was beginning to think of death. If not yet his own, then certainly the death he saw all around him.
The things he’d witnessed while in hospital and the increasingly heavy load of pain he carried every day were having an effect on his psyche. Moreover, he was back on AZT and the immediate effect on his weakened state was appalling. Yet he insisted. There had been several occasions when he’d stopped taking AZT when, in an attempt to lessen its toxic effect on him, the doctors had put him on it only during alternate months. Though this had greatly helped the quality of his life he now thought that perhaps the AIDS-related pneumonia, the PCP, had snuck in under the protective AZT curtain, when it had been lifted for a month at a time. While in hospital he had been taken off AZT altogether.
Despite the drug’s harrowing effects, in an attempt to arrest the advance of his disease Damon was determined to return to the nightmare of constant AZT use. It was a decision which took great courage. The long recovery from PCP had left him very weak and the constant pain from his bleeds and arthritis were all combining to bring him down. Yet he was prepared to suffer further if this was the price he had to pay to salvage his life.
He was now on an elaborate concoction of drugs without the necessary palliative co-ordination he should have had. Nobody instructed him in the combined use of the medication prescribed. He was left to sort things out for himself, to take what he thought was correct medication when he needed it and in the amounts which seemed to him to be appropriate at the time.
Any doctor reading this is unlikely to believe me, but Damon’s palliative care, combined with his haemophilia and severe arthritis, was virtually non-existent at this stage of his illness. While some attempt was made to check and co-ordinate the drugs he required for his AIDS condition, none was made to combine the medley of problems which affected his particular condition. This was perhaps brought about because Damon had moved about, using several hospitals during his life, and his records were scattered all over Sydney. Another explanation may be that palliative care is usually accorded only to people who are terminally ill. With most diseases this takes place over a relatively short period of time and for a specific condition. With AIDS the period is extended for two years and beyond, during which a whole number of different diseases are involved. The palliative care system had not yet learned to cope. For most of his adult life Damon, who was always on several drug routines administered by more than one doctor, was forced to make himself more or less responsible for his own drug regimen and often he got it wrong.
Perhaps, and it seems very likely, this self-administered drug cocktail was causing strange and difficult side effects of its own. Sometimes he’d suffer from acute constipation for days, then suddenly the effect would reverse and he’d undergo a bout of diarrhoea, which was equally severe and would continue for days, leaving him dangerously dehydrated and weakened. It was all becoming too much and he started to become severely depressed. Nothing seemed to be improving and his T-cell count was now down to zero – the last soldier had gone down fighting. There seemed little hope of halting the remor
seless spread of the multiple infections invading his frail and totally vulnerable body. His only chance, he told himself, was the AZT and that was making him so sick he finally doubted whether he could carry on much longer using it.
It must seem curious that Damon’s slide into deep depression gave us all a shock. After all, why wouldn’t, or shouldn’t, he be depressed? Nothing was going right for him and the four-hourly doses of Endone, a powerful pain-killer, was about all that kept him from a daily crisis of pain which threatened to affect his sanity. But we’d known Damon in pain all his life. His pain threshold was incredibly high. Medical crisis wasn’t new to him; always he’d faced it, bared his teeth, spat in its face, defied it and always he’d come out of it stronger than before. But now the flame that had always burned so fiercely and constantly within Damon was down to a flicker, its wick floating in the melted wax of his faltering resolve. Damon sat for hours alone, rocking, saying nothing, trying to avoid speaking to anyone except Celeste.
We, who loved him, were wrong to be shocked at his depression; we had no way of measuring his pain and we’d simply assumed that it was much like the pain he’d always had to bear, whereas it was much, much worse. We should have seen his depression coming and tried to do something about it sooner, though, in retrospect, I’m not sure we would have known what to do. Everything was a new experience with AIDS; no well-trod carer-path existed, it was all a new, precarious and wildly unknown way, where we faltered and bumbled and stumbled on, always feeling inadequate to the task.
I called Professor Brent Waters, professor of psychiatry at the University of New South Wales. Brent was an old friend, whom I trusted, and his first task was to look at Damon’s drugs and consult with Dr Roger Cole at Prince Henry Hospital, who had only recently become Damon’s palliative care specialist. This single sensible act between the psychiatrist and the physician probably prolonged Damon’s life. It certainly brought him a measure of relief he’d not felt for some time. Roger Cole, a delightful, quietly spoken Englishman, turned out to be one of the great medical finds in Damon’s life. Not only was he good at his job, he was a wonderful and compassionate person and Damon grew as close to loving a doctor as I imagine he was ever likely to get.
Dr Cole, if you read this book, please know how very much we are in your debt. Damon loved you and we thank you for your honesty and compassion and love.
Roger Cole soon had Damon on a drug regimen that levelled out the peaks and valleys and, except for the continuing effects of the AZT, made his life a lot more tolerable. Dr Cole gave him Panadol with the Endone tablets making the total pain-killer potential greater in combination and enabling Damon to take less of the more harmful Endone. He gave him Senekot for his constipation and suddenly, in a dozen different ways, Damon had a workable drug situation which made an enormous difference.
But mostly Roger Cole spoke to him. He explained exhaustively the effect of each drug and its side effects and its potential complications and the way he’d tried to design a path around them. He treated Damon like the intelligent person he was and never once tried to avoid an issue or failed to explain the potential consequences of his actions. Moreover, he would admit to his own fallibility, indicating when he was experimenting, hoping for a good result and, at the same time, making Damon aware of what was happening and seeking his cooperation. He made it seem like a partnership, with Damon very much the senior partner, whose advice was to be listened to and to be acted upon.
Damon asked Roger Cole about continuing with AZT and Cole, a man whom we were to learn was wise as well as a good physician, suggested that Damon call a family conference. He pointed out that he didn’t believe a simple medical opinion would resolve the dilemma Damon faced.
“Damon, I don’t know. None of us knows about AZT. There is no certainty that it will work or, for that matter, have any long-term inhibiting effect. You must discuss it as a family. I’m not at all sure this is a medical decision.” Roger Cole was one of the few doctors we’d met who was prepared to question his divine right to make a judgment on purely medical grounds.
It had long since become apparent to all of us that this AZT experiment, this so-called potential inhibitor of AIDS, was actually making Damon sicker than the disease itself. We’d already persuaded his medicos to lessen the dosage, which they’d done, though I must add, with very little result. His nausea persisted and his anaemia seemed no better; his blood count seemed to be going down to six or seven at about the same rate.
However, the decision to cease taking the AZT was nonetheless an awful dilemma. If AZT eventually proved to delay the onset of AIDS, we told ourselves, then perhaps it was worth it? Though I was beginning to doubt even this. The drug was so apparently toxic in Damon’s system that the quality of his life was almost non-existent. Damon, we all felt, was slipping away from us inch by inch. The bits of the cake were beginning to break off.
As his family, we collectively fixed on Maxolon, the awful stuff he was taking to try and combat the constant nausea caused by AZT. We felt that taking AZT forced him to take the Maxolon and that he couldn’t take a chance with it, though there was absolutely no guarantee that Maxolon would not cause him to fit again, as it had done on two further occasions. Next time, we told ourselves, he might throw a fit when nobody was around and might fall and harm himself, perhaps fatally. For instance, should he fall down the granite stairs leading up to the flat, he could easily strike his head or set up a massive internal bleed that could kill him in his present state of health.
While we saw Maxolon as the enemy, it is really a very mild anti-nausea drug; it was just that Damon was one of the very few people whom it affected adversely and caused to fit.
So when Damon called a family conference to discuss his AZT problem, we came to it with a sense of great relief, happy that we could discuss our fears in the open. We realised, of course, that the final decision would be Damon’s alone to make. I knew he’d listen to us carefully and when it was my turn to talk I made certain not to sound too compelling. Damon trusted my opinion, but I didn’t want him to make a decision where he felt he was being influenced by my desire to see him safe from the potentially disastrous outcome of a sudden fit.
After hearing us all out he seemed to be thinking for a long time, then he sighed deeply, the entire burden of a potentially life-destroying decision on his frail shoulders. The apparent failure of AZT was a really big blow to Damon and Celeste, who had together formulated a quite specific plan of action. Their idea was that he’d stay on the drug AZT, until eventually someone found the cure for AIDS or some new drug came along with a less awesome effect on his system. They’d read about a new drug ddI which Roger claimed seemed as though it might have fewer side effects. Its introduction was some time off, anyway, perhaps even two years away. Therefore the decision to come off AZT and leave himself exposed to the ravages of AIDS, until this new drug came along, was like holding a gun to your head and being asked to pull the trigger without knowing if it was loaded.
Finally Damon spoke to us, “The AZT is supposed to stop my sickness going any further but in my present state it’s not worth staying alive anyway.” He looked up with some relief, his eyes travelling directly to Celeste. “What do you say, babe? Let’s stop right now, today!” He laughed softly; we hadn’t heard that wonderful laugh, it seemed, for months. “You can get a good night’s sleep for a change and I can stop throwing up and looking like the ghost of Christmas past.” Celeste did what all of us wanted to do, she laughed and cried at the same time, hugging and kissing him. Somehow, he knew we’d helped him to make a very courageous decision. Celeste’s tears were in case we were wrong and her laughter was to celebrate Damon’s return to us, even if it wasn’t to be forever.
“I think you’ve made the correct decision, Damon,” was all Dr Roger Cole said when Damon telephoned to tell him.
“But what about your medical decision Roger?” Damon asked.
“Damon, I’ve told you I don’t know how much time you’ve got,
but my job is to enhance the quality of whatever amount of life you’ve got. The decision you’ve made is the correct one; medicine doesn’t come into it.”
It seemed such a shame. AZT, which appeared to be working so well for Tim, who was convinced he was going to die but who looked so well, had reaped havoc on Damon, who was so determined to live and was so very ill. Sometimes God seems to play a really shitty game of snakes and ladders. But the constant upping and downing of his anaemia, the effects of everything he’d been through, not the least being the ongoing cocktail of drugs he’d been subject to without proper supervision before the advent of Roger Cole, had caused him to reach a point where Damon could no longer raise his spirit. The uplift of his psyche we’d hoped for when he came off AZT didn’t eventuate. He tried, I have never seen anyone try as hard, but the black cloud that settled above his head seemed filled to bursting with his despair.
Celeste woke up early on her twenty-second birthday weeping; Damon had been very low for some days, finding a dark corner and silently rocking for hours. He’d also been in a lot of pain and hadn’t once mentioned her upcoming birthday. It was all so different from the year before, when we’d vacated our flat for the night and handed it over to them for her twenty-first birthday party. Damon had almost completely recovered from the Salmonella in his knee and was really well. Celeste recalls that I made a speech about hope and the anticipation of life which had “…made everybody positive about their lives!”
It was the happiest of days and I recall we’d toasted them and all their friends with half a dozen bottles of French champagne, whereupon we’d left for a hotel where Benita and I had booked in for the night. Celeste’s friends at Dinky Di Pies had donated an absolutely huge, at least three-foot high, croquembouche, an elaborate cake built of a pyramid of golf ball-sized eclairs glazed in caramel. It was a generous token of their love of Celeste and added greatly to the glamour of the occasion.
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