Damon was home again, just in time to see 1990arrive. Steve, their old landlord, invited him to a party at the lighthouse flats to see the new year in and view the traditional midnight fireworks over the Harbour. The always generous Steve, aware of Damon’s condition, offered to look after him for the evening and Celeste was delighted that Damon was home. But perhaps even more exhausted from a week of all-day visits to Rozelle, she took the opportunity to go straight to bed.
I have absolutely no doubt that as Damon watched the blaze and heard the crackle in the midnight sky above the Sydney Opera House he assumed the fireworks were intended as a rather nice “Welcome Home” from his loyal and adoring followers. Damon was home though, of course, he wasn’t cured, he was as mad as ever. But we didn’t care, we knew that time was running out and that we, and more importantly Celeste, didn’t want him away ever again.
Benita contacted a private nursing organisation and arranged for a male nurse to be at Bondi with Damon twenty-four hours a day. For the next four weeks, three well-trained psychiatric nurses each worked eight-hour shifts to look after Damon. It was horrendously expensive, but I’ve never been more grateful for having a little money. The mighty Damon was safely home. Poor Celeste!
Professor Brent Waters returned from Canada in the third week of January and was able to persuade Damon, though not without difficulty, to go on to Lithium. It would be some four months, well into May, before he was well again, although we were able to dispense with the three psychiatric nurses after the first week of Lithium treatment.
As I near the end of Damon’s story, I sense that so much has remained unsaid. The year of 1990 was filled with one disaster after another. AIDS is such a horrible disease, it never lets up for a moment, there is no intermission in a human tragedy which grinds remorselessly on, each day bringing with it a new horror and more suffering.
I’m not sure I want to go through the medical drama, the horrendous litany of opportunistic diseases that struck him down and which are an inescapable part of the last few months of the AIDS condition: perhaps I’ll deal with it briefly a little further on. This book is Damon’s book, the one he wanted me to write. It isn’t intended to be a journal on AIDS, a handbook on a disease which threatens to kill millions of people; rather I’d like to think it is a love story, the story of two young people who loved to the very end and who continue to love, long after the mortal terms of their relationship have been completed. AIDS has been called the disease that brings love back to people, and love is what this story is all about.
If this book has any other purpose, it is an appeal for compassion and understanding and, most importantly of all, an appeal for love for those who have AIDS, however they might have contracted the disease.
AIDS is not a condition of which to be ashamed; it is caused by a deadly virus that has come, mostly, among our sons, an appalling virus we must be rid of, one which we must defeat by using all our genius for solving such problems. That we will eventually conquer AIDS, just as we have conquered all those other diseases, I am certain. But we will do so only when we begin to treat those who are brought down by it with love and compassion.
AIDS has not received the attention and the money and the fierce determination needed to wipe it out, because it is a disease which conjures up prejudice and bigotry and therefore is of low priority among heterosexuals of the human family.
The human male has always shown that, while he mostly seems to prefer sex with the female, in situations where it is not available to him for long periods, such as prison, a great many undeniably heterosexual males have been happy enough to take what they can get in the way of sex. In our own early history, sodomy has its expected place. Colonial Secretary Goulburn, wishing to reduce the incidence of sodomy among the convicts on government farms, sent women convicts to the Emu Plains establishment and even drew up a timetable prescribing the maximum number of men they could take in an hour.
Unless we recognise its physicality as a communicable disease, and remove the social stigma, AIDS not only threatens to spread disastrously, but also to remain locked away from the human capacity to show compassion and love. AIDS creates, for the first time, a universal victim. This time the victim isn’t a Jew or a black or a yellow person, this time the universal victim is our own son and daughter.
When we withdraw love and compassion and understanding from people with AIDS, we declare war against our humaneness. To attempt to censure what seems, and may well be, instinctive in humankind is an arrogant presumption which is destined always to fail. Gay people are not sinners condemned to burn in hell. We are entirely mistaken if we think God’s stance in this issue is one of condemnation. Love, compassion and infinite understanding is the central credo of the God we profess to worship. God is on the side of the person with AIDS, and of thinking and feeling. I suspect God is actually on the side of commonsense.
AIDS is one of the great pandemics of the twentieth century, yet it has a characteristic inherent in it which could prove healing for our society. It has the capacity to unite families, who have been torn apart, by what we, in middle- and working-class society, have been taught so cruelly to regard as a sexually aberrant son or daughter, a sinner at the dining-room table.
In the final sense, we all belong to the same human family and so we must begin to see the AIDS virus for what it is, an opportunistic virus which travels through the blood of those it infects. It is no more and no less than this. It is simply a virus more deadly and more tricky than the flu virus or many other viruses, but still only a bloody virus!
Damon became infected because of contaminated blood he received in a particular way, others become similarly infected in yet another way – blood was the only common factor. The virus didn’t choose its host, it merely took the opportunity afforded it. AIDS leads to a lengthy, horrible death, because there is no hope, no real expectation of recovery. Perhaps more than most other diseases, it breaks the hearts of those who watch and wait for the death of someone they love. Waiting over a long period for the death of someone whom you love and who is suffering terribly, is a kind of psychological death in itself. Until AIDS is finally conquered we are all its victims.
If I have seemed angry at times in this book, it is not over the fact that Damon died of AIDS, but that his death was due to callousness and complacency, which didn’t simply come from the ignorance of the medical bureaucracy. They, I feel sure, mirrored the ambivalent attitude society immediately adopted towards this disease when it was stereotyped as a homosexual affliction.
A recent survey shows that the average suburban GP, with few exceptions, is dismally misinformed about AIDS and holds attitudes about it which are not significantly different from those of the bulk of the population. However, I should also say that, today, there are people in the health-care professions, doctors, nurses, counsellors, priests, helpers, a legion of unsung heroes, who have shown they care deeply. But they are still too few.
Damon also asked me to write this book in an attempt to dispel the inclination he found in so many straight people to classify and vilify people with AIDS. The snigger behind the hand. The dismissive grunt. He wanted me to warn against the brutally thoughtless assumptions which are destroying the credibility of AIDS as a tragic disease for all humankind.
I recall words he used at a talk he was asked to give to a medical conference as a haemophiliac with AIDS. I thought at the time they were pretty sophisticated words for such a young man, I now realise how elegantly simple they in fact were. Damon said: “If we don’t change our thinking about AIDS it will almost certainly spread rapidly among the heterosexual society. If we don’t start to love the people with AIDS, it will eventually destroy our ability to love each other. If we don’t love each other, we will not heal our differences or ever cure AIDS.”
I have tried to do as he asked, but mostly I have tried to capture Damon’s young life and the miracle of the love between Celeste and himself. There simply isn’t enough in the world of the love that can survi
ve in the climate of the last six years of the mighty Damon’s life and the even mightier life of Celeste, who cared for him. Theirs was a love which was selfless and wonderful and clean. The kind of love Celeste showed for Damon makes possible a loving and generous God.
In the end, love is more important than everything and it will conquer and overcome anything. AIDS cannot withstand love, which will eventually demolish it with one hand behind its back, just as Mr Schmoo disposed of Steve’s puny cat for the right to be the cat who wore the top hat and spats around the lighthouse flats.
Or that’s how Damon saw it, anyway. Damon wanted a book that talked a lot about love.
Thirty
Damon
Diary of My Mind.
At first I thought that I would write a conventional sort of a book. A book that started at the beginning, had a middle and an end. But that is not how it is going to be.
What you are going to get are my thoughts as they emerge from my mind. I don’t know if anyone will ever read this. I’d like to think they might but in the end it doesn’t really matter. Because this is for me.
I’m sitting here in bed in Prince Henry Hospital in Sydney. I have AIDS and things are beginning to go downhill. What approach do you take? Do you tell yourself that things will get better and that soon you will be well again? Or do you tell yourself that you are soon going to die? Well, the strange thing is, you do both.
I think that the human spirit finds it impossible to contemplate the idea of not having a future.
This illness has changed the person I am. I used to be so in control, so able to handle any situation, so dynamic and strong. I was born with haemophilia and so I learnt to live with pain and limitations. But I was always able to compensate by sheer strength of will and an optimism that affected those around me. Now I feel helpless and vulnerable.
I picked up the AIDS virus from the blood product that I use regularly for control of haemophilia. It seems such a bitter irony that the medicine that has saved my life became the poison that may soon end it.
How do you come to terms with the fact that just when things should be beginning, they look like they might be ending? Why do I feel guilty and responsible? It may be because I seem to have no control over what is going on. Drugs are pumped into me, pills are popped down me and I’m just lying here letting it all happen.
I came into hospital because I had contracted pneumonia. Since I have been here I have begun to have severe pains in my abdomen. There seem to be two possibilities. One is a major infection of the bowel known as CMV. The other is a benign condition that simply may go away. That doesn’t tell you much, does it. That is because nobody really seems to know what the fuck is going on.
I am finding it very difficult to motivate myself. This is hardly turning into a fascinating story, but it is a start. Let me tell you a little bit about myself.
Damon is someone who always thought big. There was a slight problem and that was that he was never too concerned about details. I thought it would just happen, it would all come to me effortlessly. What has come is illness and unhappiness. Perhaps even death.
I have been thinking about dying. I don’t want to suddenly reach out for a faith because I am scared. But something within me is saying that perhaps there is something more. Is it a fear-based concept or is it an inspiration?
There are thoughts that are going through my head right now. This is of no value other than to me. That doesn’t matter. Can a life be saved? Can a life be completely turned around from a low, when everything is an effort and all that you do is an onerous task rather than a simple matter of getting on with the realities of life?
Is there a real concept of right or wrong? Is it a weakness in me to be jealous of those around me who I see are well, are happy and have normality? Or should I be grateful to be alive at all? Are there such things as miracles? Is it a positive thing for me to believe that I could simply get well?
The real question in my mind is this: Have I let myself get sick? Or is the sickness stronger than I am? Can I tap into a force within my mind to beat the odds, to survive?
Love is the most powerful force of all. It is an energy, it is a power. I must use it constructively. I must stop listening to the negative forces in my head that tell me that it is beginning to end. I want to give so much to this world to the people that I love. I mean Celeste.
I must rebuild slowly. I must establish a routine in my life. It must have some structure. If things are an effort, if they hurt, then I must do them anyway. There is strength in me yet. It must be slowly increased, it must be cherished and it must be used. I still believe that I can live.
They say that we only use a small percentage of our minds. I am going to explore the other side. The body is merely a vessel for the consciousness. If that consciousness can be tapped I firmly believe that the body can be controlled.
How to start? The first thing to do is to have faith in myself again. To take control. To get my brain working again. To live my life around a structured existence. I have been letting time slip away from me. Now I must read, I must write, I must contribute to the person that is me. I must walk my dog. I must help to run the house. I must support Celeste in even the smallest ways. I must learn to cook. I must do the washing. I must take her out to see movies. I must make an effort with my friends. I must learn to live again.
We fall into the dying mode. We wait for what we have decided is inevitable. It is going to require a true test of what the human being is capable of to beat this one. But anything can be done if the will is strong enough.
It is truly time to explore the spiritual nature of the person that is me. I use that word to describe that which is more than the heart, the bowel, the knee joint. That which makes us more than merely flesh and blood. For that is where the answer to healing and to thriving and to existence and to life is to be found.
Thirty-one
Dihydroxypropoxymethylguanine means
You’re in the Poo. Arrivederci Roma.
The last of Damon’s mania was not over until late June though he gradually improved with a combination of Stelazine and Lithium carbonate. The Stelazine, which he hated, was discontinued around April though he continued Lithium until July.
These medical facts may appear unnecessary detail in a book like this but they may just help someone travelling the same sad way. Ignorance of the effects of medication is one of the many uncertainties of AIDS. So many drugs were used that we sometimes felt that the cocktail of pills, potions and liquids Damon was forced to take each day might have made him feel as sick as the infections it was meant to be fighting.
Stelazine, known in medical circles as a “chemical strait-jacket", when taken in combination with Lithium is a real bitch; it flattened Damon out so completely that he seemed for a while to be a walking zombie. Damon crazy was difficult to handle and, while his cocked-up enthusiasm and desire to live sometimes took the most bizarre turns and his paranoia was extremely hard to cope with, he was still very much alive, an extreme form of the Damon we loved. Now he seemed dead. The effect of the Stelazine and Lithium combination was as bad as his earlier depression. Finally, with the Lithium treatment having some effect, Brent Waters took him off the dreaded “Stella the queller", as we dubbed it.
All this was happening while his AIDS condition continued to exacerbate. The invasive Candida in his mouth and throat had spread into the stomach lining making swallowing and even eating painful. Celeste supplemented his diet with high-energy milkshakes and yoghurt to help him swallow, while keeping his calorie intake up. Damon’s bad bleeds returned and, with the approach of the cold weather, the pain from the arthritis, always present in his joints, now became unbearable.
We tend to think of arthritis as something of which old people complain, a stiffness and discomfort which is the price we pay for living past the age of sixty. In fact it is one of the most painful of all afflictions, so much so that Damon was taken off Endone and put on morphine. Later, the morphine would help
to mask some of the pain from the multiple complications AIDS brings, all of which grew steadily worse, though its initial use was for the pain in his joints. Towards the end of his life the daily morphine intake was increased to 125 mg administered six-hourly. Though it was liquid morphine, taken orally, and so not as toxic as if it were injected directly into the bloodstream, that dosage would be sufficient to support the daily habit of six or seven drug addicts.
In March, Damon started to get a recurrence of his old night sweats and, shortly afterwards, he went into hospital with severe diarrhoea which was diagnosed as cryptosporidiosis, a common enough stage in advanced AIDS but in many ways one of its most awful aspects. This particular infection meant that he had as many as twenty bowel movements a day, which consisted of a watery stool, and it became extremely stressful for Celeste to handle him. It seemed impossible that he could lose more weight, but he did, until he seemed no more than a skin and bone approximation of his old skin and bone self.
Of all the awful things that had happened this diarrhoea seemed, in many ways, the worst yet, for it meant that Damon was often suddenly and without warning incontinent and this was to continue with brief respites until the very end.
In May, Damon developed a dry and persistent cough and after a couple of days complained of difficulty breathing. When the cough started he’d immediately turned down the suggestion that he return to hospital, but when his breathing became laboured he reluctantly agreed. Damon hated hospital; he’d spent too much of his life in one or another and he would do almost anything to delay going.
Alas, it was a second bout of Pneumocystis carinii pneumonia (PCP), the respiratory infection which had taken him to Prince Henry’s Marks Pavilion and the AIDS section for the first time. It is also the infection, you will recall, which had killed big John Baker.
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