Lucy is my dog. I shouldn’t say my dog, I should say our dog. I live with Celeste. We share our lives together in every conceivable way. We live in the same house, we eat the same dinners, usually prepared by Celeste, I must admit, and we own the same dog, Lucy.
The thing about Lucy is that it has never failed to amaze me how much sheer energy a creature can have. Lucy is a six-month-old doberman and regards life as a never-ending blast of power to be expressed in the most manic and total way possible. If human beings lived like Lucy, they would probably have a life span of about fifteen years. But I’ll tell you one thing. They would get a hell of a lot of things done.
This is actually really fun, writing this stuff. I am in reality totally exhausted, probably due to the fact that I am very tired. I mean, how the hell can you get away with writing a statement like that? But I just did, and who the hell can or would give a damn about it? They might even get a bit of a chuckle.
On to the next paragraph. Rather a strange book this, don’t you think? Did you actually go out and pay for the pleasure of owning a copy? Could be the best investment you have made today. Could be the only investment you have made today. Actually I am going to try to say a few things that might be of some interest to you. Or if not to you then maybe to somebody else. But if you think about it logically, that somebody else is you anyway, so it doesn’t really matter.
Seven is going to be a lucky number.
I have only been writing for about twenty minutes. I am going to stop pretty soon, because I am running out of petrol and the filling station is known affectionately as the bedroom. Twenty minutes doesn’t seem like much of an effort, but I think they may be the most important twenty minutes I have ever spent. They may be the twenty minutes, probably twenty-five by now, that save my life.
I should mention, I suppose, that I am very sick. Actually, I am about as sick as you get. I have AIDS. I guess that has put a bit of a downer on things. But you see, that is what I am going to talk about. Not about AIDS, well, not just about AIDS anyway, but about what being really sick is all about.
How it affects your body. How it affects your relationships. But most importantly of all, how it affects the person you are. The person you were. And the person you are going to be.
Presumptuous perhaps, but isn’t that what they call artistic licence?
I am twenty-three years old. It is a very young age to have to come to terms with the concept of dying. But in some ways it gives me rather an advantage over those who are my age. My friends are concerned with getting their lives established, beginning to build their careers. I wish them nothing but good luck. But I would be lying if I did not tell you that I feel angry at myself, at my illness, not to be joining them in the standard path of building a life, a normal life, which involves going to work every day, going to a club or a dancing venue or simply enjoying each other’s company in the most ordinary ways possible. But what is normal? My normality is to sit behind this word processor and try to explain to you the way I feel. I don’t know if this book is written for you or for me. I suppose in reality it is for both of us.
My real dream is that you will find it interesting enough to sit down and read it from cover to cover and say at the end, Yes, I actually gained something from that. It has changed the way I think about things. There are people out there who are living lives that revolve around things that are not the things which one would usually consider the norm. They are things, they are events, that happen to only a very few of us. And what I am trying to do is express them in a way that may make you think that what you have, the life you lead, is special, because you have one thing in common. Well, most of you anyway. You have your health. Please never take that for granted, because it is the greatest gift that will ever be given to you as a person. It allows you to choose the path you take in life. There are no limitations to what you can achieve if you have your health. There is nothing you cannot do. Never forget that. If that is all you get out of reading this book, then I have achieved my aim. Good Lord. It is only page two.
Onwards.
What does disease mean? A real disease, not a cold or a flu, that clears up in a week or two and becomes something that is soon forgotten. But a disease such as haemophilia or AIDS that confines and defines the way you live and dominates your existence to change the person that you are forever, however long your existence may be.
One of the major concepts that I have had to come to terms with is whether an illness such as AIDS has more effect on you physically or if the real damage is done to who you are, the way you think and the fundamental conceptions you have about life. And death.
When I was first diagnosed as being antibody-positive to HIV, I found it very difficult to come to terms with the fact that this was in fact something very serious indeed. I felt well, I looked well and I truly believed myself to be well. The nature of this illness is that it can sit in the body for a very long period of time, not making its presence known for years on end. Thus it is very easy to believe that it is simply not there, or if it is, it is never going to affect your life in any discernible way. And indeed, for the first three years after my diagnosis, I may as well not have had the thing at all. It didn’t affect me in any way, and to a great extent I simply ignored the fact that there it was, waiting for an opportunity to strike. That opportunity eventually presented itself three years later, 1988 to be exact. Then I knew. This was going to change my life.
Perhaps now is the time for a little background. I was born with an illness called haemophilia, a disease that prevents the blood from clotting from the most minor of internal injuries. For instance, a very small internal blood vessel may burst and in the normal course of events a part of the blood known simply as Factor VIII
will clot that burst vessel and the bleeding will progress no further. In the haemophiliac, however, that Factor VIII is either grossly reduced or nonexistent, so the bleeding will continue unabated until a large amount of blood has collected into the site where the bleeding has occurred. This means that unless the Factor VIII is artificially introduced via an intravenous transfusion, the bleeding will continue unabated, with the consequence of immense damage to the surrounding tissue, whether that be a joint or a muscle.
In my case, most of the bleeding has occurred within the site of joints, resulting in severe joint damage that has caused loss of movement and flexibility in the affected joints and, of course, a great deal of pain and immobility whilst the bleeding is actually happening. Fortunately, the treatment of replacing the missing Factor VIII, inserted via an intravenous injection taking about twenty minutes, is an effective and relatively fast-acting treatment. However, the irony of the entire situation is that the medicine that without doubt has saved my life countless times over also became the substance that may end it far too early.
I am the youngest of three sons. The chances of contracting haemophilia from a carrier, in this disease the mother, are exactly fifty-fifty.
I was born in 1966. In regards to the treatment of haemophilia, that was rather good timing. It was in that year that the technology to isolate Factor VIII from the rest of the blood was developed. This meant that no longer was it necessary to be given a full-blood transfusion for every bleeding episode, a process that took literally hours and hours. Instead, only the Factor VIII itself could now be transfused, massively simplifying treatment.
For the first few years of my life we were not wealthy people, but we always ate well, had nice clothes and lived in a nice house. We wanted for nothing and we were always surrounded by love. Illness aside, I had the happiest of childhoods.
Bitterness, anger and frustration. These are some of the emotions that I want to discuss. But there is a lot more.
Other people are sick, they suffer too much and they die too young, their lives unfulfilled. I would like to think that I have never felt sorry for myself as such. Where I feel sorrow lies in the concepts of injury, pain and suffering. Not just how they apply to me, but how they apply to the world in
general.
Is there something intrinsically wrong with the way the human mind works?
Twenty-six
Benita
The Day Damon Died. A Prize from Queen Alexandra. The Ceiling of the Sistine Chapel from a Library Book. Words that Turn to Ice and Tinkle like Crystal as They Fall to the Deck of an English Battleship.
I can’t get past the day Damon died. When I was in London last, I would find myself walking down the Kings Road in Chelsea and I’d get flashes of seeing him and helping him around. He was terribly ill, walking so very slowly, like a frail, little, old man, afraid to cross the road, confused by the traffic, clinging to my elbow, yet, throughout, he seemed to be preserving what was left of him for everybody. He wanted us all to have a wonderful time.
This Christmas just past, when there was one place missing at our table, Damon’s place, I recalled the Christmas before in England. By some miracle Damon was a little better on Christmas Eve and declared that he’d like to go to a Christmas Eve service. Wren’s glorious Royal Hospital Chapel, built by Charles II in the seventeenth century as a home for veteran soldiers, was only a couple of squares from where we were living and we decided we’d all walk.
We rugged Damon up to within an inch of his life, for while the walk would normally take no more than ten minutes, it would be a journey of at least half an hour for Damon.
Outside it was a cold, crisp evening. The BBC evening news had earlier suggested the possibility of snow. How wonderful that would have been, snow falling as we made our way to the beautiful hospital chapel. Celeste, Adam and Bryce walked ahead to secure seats and I walked behind with Damon.
I was with my beautiful son in my beloved Chelsea, where Bryce and I had met thirty-six years earlier on a not dissimilar night, a stone’s throw from where I was now walking with the youngest of our three sons. Damon talked slowly, his breath frosting in the air. “You’re happy here, aren’t you, Mum? I’m glad we’re going to church this Christmas.”
The two sentences didn’t relate – yet they did. Damon was comforting me, telling me he knew how much I loved England, while at the same time quietly signalling that he was going to die. That this would be our last Christmas together.
On Christmas Day, Bryce cooked an enormous turkey. A French turkey which everyone thought rather funny; a turkey somehow seems such an un-Frenchlike bird; goose, duck, quail, pheasant, yes, but not turkey.
We’d decorated the flat in Chelsea and put sparklies and decorations on the rather forlorn-looking ficus plant in the corner of the room. We’d placed a straw angel at its very top and tucked our presents under it. Bryce is the world’s greatest parcel wrapper, a wizard with fancy paper and brightly coloured ribbon; he’d found a ribbon shop in the Kings Road which sold French grosgrain among other delightful bunting and he was in heaven, our gifts truly looked wonderful and they gave the forlorn little tree quite its finest moment.
The table groaned with goodies, all the traditional English fare. I’d bought the most enormous scarlet bonbon crackers from Harrods as well as proper Christmas napkins. Silver gleamed and crystal sparkled and we toasted each other in French champagne in fragile, tall-stemmed glasses.
Damon rose about noon and Celeste bathed and dressed him. When he emerged from their room about an hour later he seemed to be in good spirits. The turkey, browned to perfection and brought to the table by Bryce who carved it with aplomb and a great deal of immodesty, turned out to be superb and we laughed a lot and had a perfectly splendid time. If only Brett and Ann had been with us it would have been total bliss. When, at four o’clock, Damon was too exhausted to remain on his feet he went back to bed declaring it the nicest Christmas he could remember.
Christmas in Chelsea with Damon is the last happy picture of him that I carry in my mind. I sometimes think it must be the only one. Damon, his dark, hollow eyes and tiny, pale face under a ludicrously bright red Father Christmas cap. I cling to this single sharp image, my mind, desperate to hold it, to keep it focused, because all the other good times in his life, the other pictures, seem somehow to have been rubbed away.
But even this last happy moment starts to fade almost as soon as I recall it, replaced in my mind by that last day, the day of his death.
I see that husk, that little, tiny husk on the bed fighting for breath. I find it so difficult to think beyond those last images. Particularly that last day, it has stuck in my mind and it won’t go away – the very fragile little stick creature, aged and so emptied of life that it seemed he might snap at the merest touch.
He was such a beautiful little boy, he had such a charming way. From the very beginning he was an enchanting child. And now I can only see the death in him. I can’t see the life. His body was so tiny, like a child’s skeleton, a Belsen survivor. I can’t get the image out of my mind. My mind is stained through with the images of that last day, saturated with them. The huge, open bedsore at the base of his spine, it seems to haunt me. Of all the images that particular one, that purple and bloody wound the size of a large man’s fist, haunts me.
When we were in London together, although he slept most of the day and I knew he was terribly sick, knew he was dying, we were still sharing things. There was still a whisper of the old Damon left, the little boy and later the young man who loved to see and hear new things.
Celeste and I took him around the British Museum in a wheelchair. We have a picture of Damon and Celeste taken standing within the Assyrian Transept, the great gateway figures built by a civilisation that had every assurance of lasting forever but, instead, only the mammoth basalt figures made it through the corrosion of time to the present. The rock that had existed before they came was still there long after they’d gone, the beautiful chipping and scratching they’d made upon its surface the only sign of where this arrogant and proud civilisation had once dreamed of its immortality. I try to tell myself that nothing lasts as long as we want it to, that all the preening and vainglory of man can be swept away in a moment by an earthquake or a flash flood or worn away by a persistent dry wind and a few seasons of stubborn drought.
Nothing ever happens the way we plan it, neither the monuments we build to our arrogance or the careful building of a single life; great civilisations are swept away in the flick of a mare’s tail and a life disappears in the blinking of a cat’s eye.
Damon was and wasn’t again so quickly that nothing remains but the hurt and the grief. They possess my memory and everything else is rubbed out as though with a child’s dirty eraser.
He looked so frail in that photograph, yet he could still get excited, still share things with us. We’d take him to other places, the Tate, the Queen’s Gallery, in a wheelchair to see the Chelsea pensioners and the little Physic Garden in Swan Walk, the old apothecaries’ garden in England. A cheerful gardener picked aromatic herbs and we crushed them and held them for Damon to smell.
When Damon had been on AZT, the drug which made him so terribly nauseated, he’d lost his sense of smell and taste and since recovering it he’d wanted to smell everything. He loved the Chelsea Physic Garden. “We’ll plant some of these great-smelling herbs when we get home, babe,” he said to Celeste. “You could learn to cook things with them and our food would always smell beautiful.” Poor Damon, his thrush was so bad he could only eat soft, bland things, yoghurt and jelly, nothing spicy or the least bit tasty.
Perhaps he was doing it for all of us? Going along, shunting what energy he had left into one final terminus to make us happy; but I genuinely think he was trying to stay alive, using up the very last bit of life in him, the last drop. It was so courageous, so beautiful, and he was emptying so fast.
That was the last sharing of Damon between us. After that there was nothing more, what was left belonged to Celeste. He came back home with Celeste alone. Bryce was forced to remain in London for a further three weeks to complete his novel Tandia, which was behind deadline, and we returned the morning after he completed writing the last page and we delivered it on the way to the
airport to Laura Longrigg, his editor.
When we arrived home it was all over, the Damon I knew was completely gone, there was nothing left. It was just agony seeing him, agony every day. I know Celeste felt that I didn’t stay with him long enough when I visited every day, but I couldn’t. What I felt was total despair and total hatred. I couldn’t show that to him, I couldn’t show him that side. The grief in me would hold me like a vice, like a giant hand squeezing me and the hate and anger would grow within me and become so tight that I felt I was about to vomit up its putrefaction. I had to leave him or he would have seen my hate and known my utter desperation. For hours after, I would be shaking from the effect of this anger, this awful, terrible despair.
I didn’t know where to direct the hatred, at the forces, whomever or whatever they were? I didn’t know. I just felt absolute hatred, I still do. And despair! And disgust! I want revenge. Damon was murdered.
If any civilised government were to round up several hundred people in a minority group and make them dig their own graves, then shoot them in the back of the head, that would remain an act of murder which would go down in the nation’s history as a terrible crime against its people.
But not in Australia. In Australia we have a history of getting away with things. We hunted the original Australians and murdered them. Now we’ve done it again with haemophiliacs and other medically acquired AIDS victims. Again there is no retribution. No questions have been asked, there is no thought of punishment.
The most superficial inquiry into the behaviour of the people involved with blood in the medical and health system will prove that these medically acquired AIDS deaths could have been largely avoided. I want the people who made those decisions brought to trial. We can’t get our sons and daughters, our husbands and wives back, but the people who allowed them to die must be punished.
I admit, I felt despair about Damon all his life though I knew I couldn’t do anything about it. I think I eventually got over the guilt of having carried the haemophilia gene, but my despair returned with his AIDS. This time sombody else was guilty, a cowardly medical system, and this time they took away my hope and infected me with hate and anger which I have to live with, perhaps for the remainder of my life.
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