The house has been quiet for more than a year. Parties, not wild but happy, used to distract the whole block, and several of the neighbors did not shy from joining in a celebration they knew nothing about or did not quite understand. The man in this house was an open neighbor. He did not have a history, nor did he seem to create any that could be seen from the street. Amiable and talkative when he stopped at a fence to say hello, and often seen carrying a face that was all smile, he was to some people eminently approachable, and to others plainly weird.
But women liked him. They liked him perhaps because he was conscious of not letting his eyes drop to their breasts and hips, or perhaps because, when he spoke, ordinary words would reveal an emotion.
The house was different. Unchanging. Weather and years had no effect on it. So, when he disappeared inside it, he was no longer a neighbor but a secret.
I don’t want to imply that the house was severe or gloomy. It was nothing like that. When he arrived, I think it was eight years ago, he stripped the ugly paint off it, planted evergreens front and back, and put startling pink azaleas in pots under the sills of the front window. On tables beside windows which faced the other street-the house is at a corner-he grew obconicas mainly, friendly flowers that I don’t like because when they are perfect they look artificial. From either street it was possible to see the rooms. They were sparsely furnished but painted in warm colors, and each of them differently. The picture of the house had been completed eight years ago and it never changed. A house should be a process, accumulating life. Parts of the garden should die, others flourish. Paintings, photos, tables and chairs, should move. Neglect should inspire unfitness of its looks, at least occasionally. And then, probably, there should be more than visitors. A family should scar it, graze the skin. A little mending and changing is good for a house. In this house, though, there was none of that. The house seemed inconsistent with the man. It had the rigidity of a silence intended to end argument and change. A picture of stability which could be happiness.
Through most of this time I never spoke to him. That was not willful. The opportunity never arose; though it could also be said I never made one. When we first met I was one of the team whose work would be to care for him during the last few months of his life.
“I’ve seen you”, he said and eyebrows lifted to form an irony.
“Yes, I live close by.”
“It must be strange. Is it allowed?”
“We talked it over. I don’t think there will be any problems.”
“If I’d known I could have invited you up for a meal”, he said, in that manner that was to become familiar, talking as though there were no more chances to do or to plan. For a moment I stumbled on the thought of objecting vigorously.
“You still can.”
He laughed, surprised to find he talked about himself in the past tense. “Yes, of course, though you may have to cook if I feel like shit.”
“I’m not that bad a cook, really. You may be disappointed.”
In the first half of the last year the house was noticeably closed. Window shutters locked a month at a stretch, the canary yellow car disappeared, and the grass, what small area of it there is, grew too long. He was in hospital while the burglars moved in.
I am told that when he was in hospital he was a different man completely. The place reminded him of his dependence on other people and the truth of his illness. Why would a perfectly able and competent person be in hospital? He hardened against the forms of help and incessant prodding and testing which are natural (or at least unavoidable) in hospitals, so that it seemed to the staff he was normally unfriendly, plaintive, and terse. They were glad to get rid of him when it was decided he could stay at home, or, rather, that there was nothing more that they could do for him.
In his house he could be difficult, too, but here at least there was time for him to explain what he wanted and didn’t want, and the team considered it part of its work to make these adjustments—within reason.
With some people the problem is an excessive willingness to be helped; these people want servants who will turn dying into a style of luxury. —That’s what I’m told.
In the first weeks he would allow us little more than to drive him to appointments with his doctors, for tests at the hospital, or to visit relatives. He was uncomfortable driving when he discovered his vision could suddenly blur. For a long while he relied on friends, those who were not afraid to visit or, rather, to wait through the long silences or bouts of crying that could erupt at almost any moment. If it was not plain fear that kept some away, the uncertainty of dealing with certain death restrained the rest from visiting. It was to provide relief for those people who had helped most that we were here.
Elizabeth was the first of us to notice his passion for chess. Among the books in his library was a section devoted to the game, and in the living room an old cabinet contained at least a dozen sets of men and boards.
“Everyone says that. Without fail, it is always the first thing you hear.”
“No, really, I think I know the rules, but I’m sure I’m no good at it”, Liz replied. “I like board games, though.”
“I like them less now.”
“What do you mean?”
“For some reason people always advise a new opponent they are really no good at the game”, he said, setting up the black pieces on his side of the board. “They think of it as an intellectual game. The mind goes on the line.”
“No reason for you to worry, if you’re good at it.”
“I suppose not”, he said with some anger.
“Well, we can just play. You don’t have to talk about it”, Liz said.
In the middle-game he started to talk again, looking at the board. “If I castle, plant a knight in front of this position, and play safely, the defence works itself out. I wouldn’t need to force a win. Draws can be very satisfying. It’s not at all like life; there’s too much art in it.”
“Competitive, too”, Liz offered, struggling with his cryptic messages.
“With you, unfair competition.”
“All of you together, it’s unfair.”
We learned not to be so rigid in our scheduling and we let him arrange us around him, realising that eagerness to help could destroy the will. It was unfair.
But this, like everything in the last few months, also changed. At first, he wouldn’t allow us to do the laundry. He persisted with this ban longer than anything else, for reasons that must have been quite irrational because he didn’t mind at all that we did the ironing. In the meantime, we restored the house when he wasn’t looking, repaired the garden, and potted plants. The picture of the house got better as he deteriorated.
He never forgot about the washing completely. His body would not allow him to forget. During long periods of diarrhoea he lost weight into his bedclothes and trousers; and when the problem wasn’t diarrhoea he would be throwing up every meal. We became adept with buckets and towels. That was easy enough. It was much harder to cope with his embarrassment and sense of degradation. When he felt this most acutely it wasn’t strange he wouldn’t talk to us, answering with shrugs, grimaces, and nods, instead of words. Moods fluctuated with his body, though, and when he felt better, he talked more.
Twice he asked to speak to meetings of volunteers and it was during these meetings we heard what he thought about us.
“I hate every one of the people, every one of those volunteers who come into my house”, he said. “I hate seeing my clothes neatly pressed. I hate having the bed made for me. I hate hearing questions like ‘Would you like a cup of tea?’ ‘Do you think you will be able to have some dinner tonight?’ ‘Would you like to see your mother tomorrow?’ So I swear and curse. I think that if I hate everything that is happening to me enough, if I am angry enough, it will all go away. Stupid. What’s amazing is that these people decide they are not going to give up on me. Anger makes me feel better. It keeps me going.”
At the start of summer his mother arranged a birthday party, gathering all the reluctant, complaining family at the house. She wanted us to be there, too.
It seemed to me the more light came into the house the worse he looked, the easier it was to see those purple blotches which had appeared on his face. —No, not really the light. It was seeing more of his family made me realise how divisive and frightening illness could be. Mother watched everyone keenly, afraid that at any moment someone would let a taboo word loose like a bullet in the air. Sister hugged him too quickly, and careful not to let her lips touch his face. Elder brother’s wife and child had conveniently found other duties with a mother-in-law. All this healthy prejudice and fear made him look ill.
I winced with embarrassment whenever someone took up their duty to make conversation.
His cousin, Tom, arrived like a change of weather, strode into the living room with a large, brown-papered parcel, and larger smile, planted himself on the sofa, and kissed the thin, sick man on the lips-leaving some of his smile there.
“Sorry about the paper.”
“Oh, god, not another one.”
“Who did you say was the chess player?”
“John. Over there”, he said, looking at me.
“Good. I’ll beat him first then.”
“Not if I have anything to do with it”, I said, accepting the challenge.
The brown paper tore open, revealing a new chess board and heavy, wood box.
“That’s the last thing he needs”, the elder brother moaned.
“Yeah, I know, aren’t they wonderful?” Tom replied, opening the box and taking out two of the pieces. “Come on, we’ll set them up on the table in there.”
Tom and I played chess, on the table with the obconicas. Brothers and sister talked, I thought too eagerly, with Liz and Mary, the two women on the team. Perhaps they thought if the conversation with the women lapsed they would have to speak with the men. With the women they could simply be grateful, but the men were another matter. They would have to ask, “Why are you doing this?” or “What are you really doing this for?” Tom, though, felt no need to avoid any of us.
“He told me you live near here.”
“Yep. Just down the street a bit.”
“You didn’t know him before?”
“No. We’d never met.”
“Well, he likes you. I mean he likes you more than the others. Not that he isn’t grateful to all of you, but he likes you the most.”
“I don’t understand that at all.”
“He says you say what you think and you wouldn’t let him win at this”, Tom said, nodding at the board.
“I don’t beat him anyway.”
“You will, though… You know he uses the game to keep watch on himself.”
“He doesn’t care about the Kaposi’s and the rest of it. Well, that’s not right: he does care. He just doesn’t want to go off his head as well. He couldn’t stand that. He’s afraid he won’t be able to think.”
“Oh, I see.”
“He’s got a nickname for you.”
“Are you going to tell me?”
“I’ve no idea.”
“The black king. That’s what he calls you. Silly, isn’t it?”
“I hope so.”
“Well, you’re not doing too well today. I’m going to win, I think.”
“It does look bad for me.”
“So why are you doing this?”
“Helping, here?” I asked, to make sure I would answer the right question.
“Lots of reasons. Just to help, for a start. Then, so he will know he’s not alone, I suppose.”
“What about you, though? What do you get out of it? And if you say ‘satisfaction’ I’ll hit you.”
“No … To tell the truth I don’t know yet.”
From its first days everyone thought that summer would be particularly hot and mulled over hot synonyms like an incantation. Scorch, blaze, and the rest.
A week after the birthday party another heat began. Mary telephoned one morning and waited at the gate for me as I ran down the street. We may have committed some indiscretion, or maybe one of the family had trusted a neighbor. It was just as likely that gossip and guessing had, for once, converged on the truth and spread like fire to the surrounding houses. On the footpath a great slash of red paint spilt from a can underlined the four letters of my neighbor’s new name, written with a thick, bold brush. I was astonished and Mary was crying. “That’s not all”, she said.
“What else!? What else could the bastards do?”
She took one hand from her face to point at the letterbox which was filthy with excreta.
“Does he know?”
“He can see from the window, John.”
“Please, you go inside, Mary. I’ll get rid of this.”
For a moment I thought of cleaning it, but really I wanted to kill, and might have except there was no one to lay my hands on. I settled for a sledgehammer, taking a swing at the box to knock it off the fence in one blow. There was nothing to do about the paint. Hosing down turned the red slash into a red blur, but the word was already dry and could not be moved. It stood screaming on the footpath for days and was never removed entirely.
There were more important things to worry about. Our friend joked about the shit. “You know, you are too quick to condemn my neighbors. It could have been a very agile dog, or that big cat a couple of doors down.” Or he joked about my sledgehammer. “I’m lucky I still have a house the way you people behave!” I think it was resignation that released this humor on us, turning everything terrible into laughter. Weeks of humid, breathless heat, which I enjoyed, suffocated him. “It’s all right”, he said, “this heat now and no hell later will suit me fine.” He flatly refused to return to hospital. No one there would understand his new jokes.
He died the night of the promised change, just to show that life really can imitate the weather. Tom tells me that Liz made all the calls when it was clear he would not last. Tom knocked on my door and said I’d better come. He didn’t need to say why. I knew it would be like that.
Large, cool drops of rain crashed on my glasses and shirt as we ran down the street. The house, which had been sealed tight against the heat all day, was uncomfortably still and warm. As soon as he entered, Tom cried out, “Oh, for god’s sake, open the bloody windows!” It was dark, too, and I stood, sweating, in the shadows of the hall that led to the bedroom. Now, I thought, if only the doctor and nurse will not come. I wished for them not to come so there would be no more injections and orders, no more parody of medicine. I stood outside his door and wished he would die. Liz went from window to window, almost in a panic, as though opening them would save him. I hoped and wished and knew that nothing would.
“Richard, it’s me—Tom. Do you want anything? Johnno’s here. Do you want to see him?”
Tom put out his arm to call me into the room. It was Tom calling, though, not the man in the bed. Except that his ribs moved under the single, light sheet, he was dead already, and I doubt he could hear Tom spluttering about a game and that the black king was here.
I sat behind Tom on Richard’s bed. I put my arms around Tom’s arms and chest to stop his fidgeting and prodding. While he sobbed, I closed my eyes and wished again.
Then, while the house cooled, before the others came, there were no more questions, only answers.
Originally published in Outrage, September 1988, and then in Imaging AIDS, Artists Against AIDS Exhibition, 1989, and Fruit: An Anthology of Australian Gay Writing, edited by Gary Dunne, 1994
Between the ages of 17 and 21 he was devout, and considered taking holy orders. Before that were several years of recreational drugs, “Grass mainly”, and afterwards, the steep decline of devotion into the present. He says there is a theory in psychology that the image of ourselves is moulded slowly by the way in which other people treat us and react to us; and also that he always thinks of himself as ordinary. But he looks down on everyone, talks slowly, because no one can look him straight in the eye. Taking no notice of his family, except to telephone every now and then to keep in touch, he is a little surprised and frightened that his lover finds them so disagreeable. The step-father sells sun-glasses. The mother is a social worker. The step-father can spend hours giving instruction in the new technology of his product and the vagaries of the sales market; there is no division between the life of his work and his private life. During business hours mother discusses the horrible details of a child’s abuse, knowing that the world is painful and dirty and, for some people, without hope, and after hours switches on a Pentecostal fervour in which she imagines her son surrounded by religious ornament. She writes a letter saying what she would like for her birthday: “a cassette recording of you reading the book of Isaiah.” The son refuses, with a knowing laugh his mother cannot hear. “They’re all weird.” “You’re the only normal one, are you?” “Yep.” There are very few people he does not like, finding something likeable in all of his fellow workers except one. His politics and hobbies are social. Hard-working member of the local branch of a democratic and socialist party, he brews beer at home. Examples of it turn up at parties, restaurants, the homes of friends, anywhere it is acceptable to be seen with a bottle, and sometimes places where it is not. Hobby, politics, and the local cricket team, define him as a social being. Three thousand miles from his parents’ home, even further from most of what he remembers, he has fitted comfortably into an unknown city, as if no place would be alien so long as there were people in it. Distance and change should have made him wary. He remains unmarried, but lives with a small and quirky woman. In their bedroom is a framed reproduction of a painting by Bonard. It shows a girl inelegantly lumped, face down, in a messy bed, sleeping. The painter must have known her very well, and must have loved her, less in the way some artists love each last painting than how, for others, there could be no limit of attention, or paint, lavished on unguarded poses. The girl isn’t always tired, but she does enjoy her sleep. They will buy a house, a study of desuetude, the only kind they can afford; and take the bed with them, and re-paint it.
“I have been taught to identify the mad, and to say ‘This person is mad and should be avoided,’ or ‘That person is not like us. He must be mad’; though the lesson I have learned, in fact, is that people we wish to avoid are, consequently, mad, or that people who do not choose to be, or cannot be, like us, are mad.” “You have to be schizophrenic to understand what it is like”, he says. “If I were to describe what goes on in my head you’d think it was crazy. When I am thinking it, it is very real.” In our first conversation he tells me “I love music. Classical Music. And pornography. That’s all. Just classical music and pornography.” Inside his flat there are clothes on the floor, along with a lot of dirt. It is not possible to wash yourself clean in the bathroom, though the bath itself is clean. “I clean the bath. The bath is clean,” he says. He plays the guitar, and then the mandolin, and then the banjo, and I notice there is a violin in a case on the floor of the living room. —But he does not get to the violin: suddenly there is no more music and it is time for pornography. “You’ll like this”, he says, as if by affirmation it would be true. A woman whose breasts are clearly too large for her costume gazes through a window. He goes to the record collection and asks, “What would you prefer—Shakespeare or, I know, yes, this will be great, Emerson.” He shakes with excitement. He takes out the spoken word recording of Ralph Waldo Emerson’s poems. The woman who was gazing through the window is lying on a sofa, masturbating. “Thy trivial harp will never please Or fill my craving ear; Its chords should ring as blows the breeze.” Yes, Ralph—of course. There is an invisible world. He introduces me to a friend, also schizophrenic, but one who, unlike him, refuses to take his medication. John was a mathematician, and is still brilliant. Now he is Jesus. We sit in a café with Jesus, and I ask “What makes God laugh?”—immediately having to mask my wonder at hearing a precise and reasonable answer. There is a more perfect world than the one in which we live. Inevitably, he will refer the woman he wants to love, by way of introduction to the disciplined and misogynist world of Arthur Schopenhauer, to a bifurcation of that world into the mundane and the transcendent. In the commonplace part he is only one of many. By a choice which appears to be not entirely conscious he keeps the windows of his flat covered day and night, day after day, and always. Lonely, only early in the afternoons, when he is tired of practising a difficult piece by Bach, he says to himself, “Now, what shall I do with my penis?” and, in the absence of the woman whom he loves, it is time for pornography. The exceptional part meets the ordinary and, here, anything is possible. He takes the opportunity to improve Shakespeare. Once, in the asylum, he had read that “Such civil war is in my love and hate That I an accessary needs must be To that sweet thief which sourly robs from me.” Years later, in the afternoon, in a nausea induced by less than two milligrams of Cogentine, he remembers “As a necessity my needs must be To that sweet thief which hourly robs me.” Which is taking what from whom? Desire steals a part of everyone. There are moments I feel he is about to say, “The world is my idea”, and he would, as he did the moment the windows were closed and covered, look up at the sky, thinking to fly there, panic, look around him for something to hold on to; or he will, looking down at his feet, believe the world to be just a ball which will stop turning if he stops walking. “You should read Jean Paul’s Selina to see how a mind of the first order tries to deal with what he comes to think nonsensical in a false concept which he does not want to relinquish because he has set his heart upon it, although he is continually troubled by absurdities he cannot stomach.” He decides “I cannot love anyone” but has set his heart upon it. One woman tells him, “You sound like a text book. You think too much.” These words come out of the mouths of people who love their own oppression, who have become insensible after having administered to their bodies a sufficient amount of pleasure (tennis once a week, nightly television, cheap but effective wine, a modicum of Faith). You cannot utter such words to a man who has lived in another world, where infamous excesses are committed upon the very person of the prisoner; … vices which the propriety of modern times does not permit us to name. In a word, you cannot say something so stupid to a man who has been mad with Desire. The next time his psychiatrist asks “How are you feeling today?” he gives my reply: “I shall instruct my madness to be proud, For psychiatrists are proud and make their clients stoop.” A small, typed sign is stuck to the door of his flat; it says, “Psychoanalysis: device allowing pigeon to enter but not leave loft.”
Where words are scarce they are seldom spent in vain, For they breathe truth that breathe their words in pain.
—William Shakespeare, Richard II, 2.1.7-8
The first time I heard someone speak about AIDS Dennis Altman was warning the audience of a conference that AIDS would become a business, providing employment for professional educators, carers, commentators, researchers, opinionists and authors. At the same conference several people noted the absence of speakers directly affected by the virus.
Later, I spent a short time writing Question and Answer advertisements for the Victorian AIDS Council (Q: Is kissing safe? A: Yes. It’s as simple as that …). I signed, like everyone else, documents (loosely) binding me to an agreement of confidentiality. One night I spoke to a man, antibody-positive, who expressed the opinion the Council’s obsession with confidentiality was at least partly responsible for the crushing vacuum formed by not being able to hear the voices of people with AIDS He acknowledged the good intention of the Council policy to protect him but added the angry footnote, “I don’t want to be protected.” No doubt the policy also exists to keep safe from those who need no protection the ones who do.
The verbal litter of the media’s coverage of AIDS issues has been to some degree corrected by the sensible and compassionate commentary of Altman and a very few others. I waited for a while to hear how creative writers and artists would speak about AIDS, and heard nothing, or so near to nothing as makes no difference. I waited, also, to see in print the record of those personal experiences which only people with AIDS can tell and, again, found almost nothing. It is obvious confidentiality is not the only agent of the silence we are in. I cannot resist the temptation to tell a simple and ineluctable truth … There are too many creative writers. Quite a few of them are gay. Hardly any of these (I’m being very generous, I think) have bothered to write anything about AIDS. Therefore, gay Australian writers are, on the whole, a bunch of fucking wimps. I feel better having said it.
Ending my own intransigence by seeking to promote the publication of whatever people with AIDS had written I found more disturbing reasons for the stifling climate. Writing requires an effort of concentration and endurance which people with AIDS often find themselves unable to afford. During periods of illness, if there is no one who can be trusted to transcribe a tape recording or to assist with the physical trouble of placing words on a piece of paper, no strength of desire can overcome the fact of physical weakness. —And when the writing is done there is no guarantee it will be published. One journal, written by a man who died of AIDS in 1987, has so far failed to be published because—the editors said—it is not very well written, and too short to stand alone. This failure makes me rigid with anger: considerations of ‘Literature’ and ‘Art’ should prevent the publication of almost everything we read these days.
Do I really need to give reasons for you to read the excerpts from James’s journal which are reproduced here? Perhaps not, but bear with me a while so I can list the most important.
First, James wished to be heard. On 29 July 1987, when it appeared his journal may have been lost, James spoke into a tape recorder recounting the anguish of a person who had been violently gagged.
“I just cannot believe what’s happened! Yesterday Wendy looked for my journal but couldn’t find it. She left and Bob rang. He said it was in the drawer. It wasn’t there. In fact it was nowhere and still hasn’t been found today. Yesterday I panicked and felt around, the nurses searched everywhere, people were phoned. It just disappeared from my room.
“I just can’t believe this. I was so upset, I’d lost a part of myself, yet how? How could it just go? Who would take it? If someone came in, why would they take that? Wouldn’t they take my walkman? What if it got caught up in the linen? Where the hell is it? I felt bad enough before this; I was agitated, angry. I’d just been here so long, felt I couldn’t stand it, was upset. It was all getting to me: the hospital, drips, needles, tests, people in and out, noise-just too much! Then yesterday stretched it so far I’d thought I’d snap, even if they just wanted to take my temp. I didn’t think I could stand even that.”
Second, recording the ordinary facts of his own illness and death, James shows how unnecessary and wasteful ‘good writing’ is: lying requires an effort of will which the very ill are not likely to squander.
Third, I am showing only those parts of the journal which refer to James’s eyes so we can think, as we read, about how lucky we are; and to remind us that, by reading, we can silently agree James’s work was valuable and is not wasted on us.
My left eye is causing me some concern. Maybe I am worrying too much, as usual. It’s just that I’m scared it’s getting worse. I close my right eye, using only my left and it seems I can only see half of what I should see. I can see directly ahead but not below the centre or to the left side unless I move my eye right around and then I can still only see what I am looking at. So, if I look left I can’t see straight ahead. The same if I look right.
It is scary because it really does seem worse. And if it gets any worse than this it will really affect my day-to-day life. If unable to drive, I’d lose a lot of my independence. No—I just couldn’t stand it …
Bob told me some strange news yesterday. He said that a Scottish vet had found a vaccine that kills the AIDS virus in monkeys—that there was a vaccine against it, but they hadn’t tried it on humans. It hit me very hard. Imagine the impact that news like that would have on me. And to make matters worse, we didn’t know any more than that. Could it ever be used on humans? Did it just prevent you from getting AIDS or could it be used on people who already have AIDS? There were no details, other than it worked on monkeys. And monkeys being so similar to man, it created a real possibility of hope.
My head spun with a hundred questions and no answers. Emotionally, I was stuck in limbo. I felt like crying, laughing, yelling, but I couldn’t. Because I didn’t know enough to know how to feel. We didn’t know for sure. But there was hope, a new hope!
Bob heard it on the news, so we thought that more information would be gained on the news that night. I looked at all the evening news shows and there was nothing! Not one mention! I couldn’t understand it. We both couldn’t. By then I was OK and wasn’t really thinking too much about it. I was thrown into such a state that my brain switched off to stop the torment of all these questions without answers.
And my left eye is getting worse. When I use only the left one, the lower right corner is distorted. So if I look at the TV with the left eye, the bottom corner bends upwards. And I’ve had double vision, too. Before I could just hope it would get better. Now it’s painfully obvious that it won’t. But still I don’t think about it if I can help it, which is almost impossible because I use my eyes all the time. I can’t think of ifs and buts and what-ifs, because I don’t really know what’s going on. I only know I see less: this flat, all of a sudden, seems so much darker, and I can’t drive at night and even walking outside at night is very difficult. I could have cried a few times this week, but it just didn’t come out …
But the hardest part of it is that I am finding it more difficult to do things and if it gets worse then things become even harder. I lose so much independence, constantly in need of help. What about reading and writing? And driving and going where I want to go when I want to go?…
I try too much not to walk into things, so what happens? I walk into things. So I got out of there as quickly as possible and came home …
Things haven’t improved in the last few days. In fact things have become much worse. Even writing this is most difficult. My eyes have deteriorated in the past week and even more in the past two days. I’ve also not been feeling very well for most of the past ten days or so, although today I feel good again physically …
Since Sunday my right eye has become fuzzy, making it very hard to read, write and drive …
Today I was wiping the bench and I double checked that it was clear of anything. I moved my arm across and knocked a glass across the room. I even made sure to check. The glass was right under my nose and I couldn’t see it. I can’t see anything down there. Anyone would have seen it. It’s been a pretty lousy few days …
When they went bad all of a sudden, over just a couple of days, it really scared me. I just hoped and hoped that it wouldn’t keep going the way it was. I guess I could say it’s been the worst few weeks I can remember …
I was convinced I had to feel bad about my eyesight, I mean angry and I should cry and throw things a lot. But now I see where I was going wrong. I wasn’t following how I felt. I was reacting in a way I thought I should, how I’d be expected to react in other people’s eyes.
So I guess Bob was right. The decision not to drive was the acceptance by me of the condition of my eyes …
I saw my doctor who suggested a new drug I could try if I wanted to. The only thing is it may do nothing. It may improve my eyes and it might have side effects. I said, “Yes, of course, I’ll try it.” I felt I had to try …
And the theatre was so dark! I just had to go very slowly and hang on to Bob. I’ve not had to hold on to someone before and that was hard to cope with too …
I was admitted into hospital for the new drug Phoscarnate.1 It is a new drug from Sweden, with no guarantees, but it could improve my eyes. There is a very small chance of some side effects. Hallucinations, anaemia, headache, epileptic fits, and a few I can’t remember, but really they were such rare occurrences, like 2 or 3 per cent.
When I arrived on the ward, no one knew exactly why I was there. Oh, but I did of course! Someone said was my DHPG2 ready? And I had to tell them, “No, I don’t have that any more.” They said I should go to my room and settle in and all will be sorted out. I asked the nurse who took me, “Why am I here?” She said the doctor probably wanted to keep an eye on the cough I’d been telling them about for six weeks. I said, two weeks is a long time for a check up, that I was here for a new drug to try on my eyes. Oh, says she, I’ll go and check. Nurse returns: Yes, you are here for that. Patient, who knows nothing, says: Yes, I had already told you all that! I knew why I was there, no one else did and when I tell them they check, come back and tell me why I’m here. But I’m the patient and they are probably embarrassed because they didn’t know. Oh yeh, they’d also lost my file. Probably why no one knew what the hell was going on. It was all a bit of a joke, really.
The drug didn’t arrive on Monday. They said Tuesday, but Tuesday comes and the drug didn’t. They now say Wednesday! I am handling being in hospital, it is a nice rest, I eat well when I can (I’ve seen the dietician about eating only what I want) and it’s warm. But I was getting agitated about being there for no apparent reason. But as always there was a reason for me, I thought, and the reason for this also caused me more worry and agitation.
It’s Friday, here I am and so is the drug. I am apprehensive, hopeful, determined, a bit unsure of its effects, all sorts of feelings. They want me now, to plug it in!
Today they told me the heart problem was probably due to the same CMV in my eyes. I seem to get worse: like 39° temps, not being able to eat, vomiting.
I was on the Phoscarnate for one week, and they took me off because it was affecting my renal functions and they’ve put me back on the DHPG with a much higher dose. What’s going to happen in the next few weeks? Well, nobody knows. The only good thing that came out of it was that I might be home in a week.
Lunch was lovely but the whole experience wasn’t easy. Last time I was in that restaurant, I could see the beautiful room. This time I couldn’t see any of it, and Bob had to cut my food. I’ll have to adjust.
I did something so stupid, walking from the cinema to the restaurant. I put in more of a limp than I already had, because I was holding on to Bob and I didn’t want people to think we were ‘together.’ Afraid of comments!! I felt a right idiot afterwards, when I thought about it. People that I couldn’t see and never would again, who cares about them? I shouldn’t, but today, well, I just got silly for a while …
The eye specialist came and said the number of white spots in my eyes had decreased. Good news for once. But he was concerned about my central vision: that the white area could spread to the centre, even though the number of spots is decreasing. That danger has always been there anyway. They just will NOT grow there, they just CANNOT and I’m bloody determined they won’t. The main thing was that they decreased—so why should they grow any more? They will not! They will GO! He left his report, the doctors are keeping me on medication. It seems obvious to me, seeing as it’s helping …
I guess I couldn’t be bothered, I wasn’t interested and I just can’t write any more. That’s why it’s on tape and Wendy is copying it into the journal, which I guess is basically the same thing. I’m not writing it, but they’re still my thoughts and words …
(By this time James was using a tape-machine to record his thoughts. The tapes were later transcribed to the journal by Bob and Wendy. In these tape recordings James often recalls the events of previous weeks, explaining the confusion of chronology in these entries.)
But yeh, I guess I’ve got something to complain about: who wouldn’t get angry, depressed, complain if their eyesight were just slowly going and if their life-span wasn’t expected to be long?
I was talking to my doctor, the day before, and I was telling her that I was thinking of getting a white stick, so if I was ever walking through the streets with someone and I bumped into someone, they would know that it’s because I can’t see very well. Maybe I wouldn’t get abused and if I had the stick people would move away and let me through. I’d have someone with me, of course, I couldn’t do it by myself.
She said that was a good idea and later that day the physiotherapist comes in and gives me a walking stick! I was quite annoyed really, that they just told this girl, “Give him that”, and hadn’t bothered to talk to me about it. I was just a patient. So then I thought, what the hell … If nothing else it might be a nice prop. But that’s just it. I was talking to my doctor about a white cane and somehow or other it ended up being a walking stick.
I believe my eyes are getting worse, I don’t think it’s working so why have the drug. It seems harder sometimes, to have my eyes deteriorating than it would be if I just couldn’t see. I would just have to get used to it, then and there and get on with it! But then I can see things close to me, like an ashtray, cigarettes or a cup: if I look around on the coffee table, I can find them. I should be grateful that I can still do those things and see. But I’m so fed up and angry, I’ve been so depressed. It’s no wonder I want to forget the drug, forget the hospital …
I think it’s going to be OK. I think everything is just going to be OK. I feel good and I feel less weight on my shoulders. I feel better within myself. It’s going to be OK!
At this point the tape-machine James was using jammed.
It is, I think, wrong to assume James’s last, hopeful remarks are an hallucination. Having, in the end, more conviction than most in the truth of his unusual spiritual beliefs, he refers to the future of his soul, not his body.
Wendy said of James’s last month that “Slowly, he retreated into his inner world and conversation with others became more limited. However, he would still assure us that he knew what was happening, even when he seemed to be asleep.”
A few days before his death, having already survived several weeks longer than some people expected he would, James appeared one night in Wendy’s dreaming. He was healthy, beautiful, and clear—the picture of his former and future self. In the dream they worked together in a field planting onions.
James died in his sleep on the evening of 18 September 1987.
P enters the room. She’s a big woman, a bit fat, and she dresses like a tart. She married young, probably because that is what young people with no education and no future tend to do. Her parents didn’t do good by her, and she is not going to do any better for her kids. At least that’s the way it looks like turning out.
She has two kids, and her husband has AIDS. The husband is in the next room, gasping for air, coughing up blood. He will die soon enough, and she will still have two kids to take care of. Naturally she’s very pissed off, and very scared.
The husband got infected by the virus that causes AIDS when he was fucked by a man in a sauna. He liked having sex with men and women, but will only admit to liking sex with women. The men who fucked him were faggots, worthless. He’s a married man, after all, quite normal, and not one of them. Married men are not supposed to get AIDS. That is what is happening. Naturally he’s very pissed off about this, and he’s very scared. He knows he is going to die. Though he has heard there are people who are ‘living with AIDS’, it feels like he is dying.
P enters the room. The place is a mess, though it’s not quite as bad inside as it is outside. (Someone has been pissing in the elevator.) Eve was just showing me a book that Douglas left for her to read. Eve looks up at her mother and knows that it is all going to start again. I feel like I should be able to explain to her what is really happening. “Your mother is angry and has to blame someone. I will be here for you.” But I am not sure I will be here for her; not always, anyway. —Next week, certainly. For a while yet. But not always.
There she is, though, coming in again to give Eve another serve. Bitch. “You little bitch! You fucking little bitch! Didn’t I tell you to clean up your stuff out of here? Can’t you help me at all? What are you trying to do? Kill your father!?”
When I go home I can put on a record, anything by Mozart, and life comes back into balance. In the Commission flats little Eve is still in hell.
I don’t really want to make you feel guilty about having to leave the team as soon as it was established—these things happen—but we are already feeling the strain of not having a co-ordinator who can co-ordinate us. The team they put together for M is already breaking up. At the area meeting tonight [Support services of the AIDS Council are divided into geographical ‘area groups’ relative to the city—North, South and so on. Larger groups are subdivided again, to make meetings and organisation manageable.] several new people who had just finished basic training were told they would be needed to stand in. M’s wife is very choosy. No gays, she says, which makes it a bit difficult. Who can remember everything they’ve done with their dick in the last five years? Does just thinking about something bent count? Lord, she is hard. She hasn’t got her way completely. Two of the team are gay, and four straight.
Another briefing and discussion on Saturday. M’s wife is very strong-willed and wants to be in control of everything. Fair enough, perhaps. Her house. Her family. Her husband! It is not her death, however, and I am concerned about her always being between the team and M. The new co-ordinator, Henry, tells us we’re not to become emotionally involved. OK. Heard that advice before. M is not the average client. He’s married, for starters. Two children. They live in a Carlton Housing Commission place. His eyesight is poor, and this may get worse, of course. Oh, lord, and there is lots else to worry about. I cannot believe some of the things that are happening in that place. The kids are in a real mess. I cannot believe how little support they are getting. I haven’t quite sorted out what can be done about it. Though relations with P’s mother and sisters seem mostly normal, I’m told that M’s mother, who tried to extract a promise never to tell anyone of M’s true condition—a promise quickly broken because no one believed it was leukemia anyway—rarely contacts him, and I suppose that there is some conflict there. I gather she has feelings of guilt about M’s sight impairment, an odd thing to feel guilty about since it wasn’t her fault. She didn’t like him wearing his thick glasses any more than he likes wearing them. They only get in the way of showing his handsome face. (Actually, it is rather comical to think of M in a sauna, with or without his glasses, totally helpless, not knowing what he was grabbing on to!) Is M’s father better or worse, learning of the diagnosis and packing his bags, without saying anything, and going bush? He has visited his son once, a big step no doubt, but I know nothing about what happened when they were together. M has two brothers, one an alcoholic in a de facto relationship, and the other openly gay and in no relationship at all (as far as the family knows). Yes, that means it is a family with every known kind—straight, bi, and gay. M is candidly admiring of his gay brother, which only makes the hostility to his own one-night stands even less comprehensible. Deirdre has been off really ill with flu. Douglas has been stricken with it, too, along with half of his Army Reserve mates. Fairfield (as well as other hospitals) is filling up quickly with victims. Consequently there have been problems providing people for the roster, and I was feeling guilty about being on leave for a week. But P is down with flu, as well, apparently not too badly, and she is at home, so I feel all right about taking my time off. She can call if she wants anything, and I know she will. M has spent the last few days in Ward 4 being pumped full of Bactrim, and this seems to have warded off his fourth attack of pneumocystis, but I don’t think he is going to survive this winter. The decline is becoming obvious. He has lost several kilos in the last three weeks and has decided to cease all medication. It can’t be long now. At least, I hope it won’t be long. I don’t feel guilty about saying that any more … Love, Jim
P telephones Deirdre to ask if she will go out with her to the pub in Rathdowne Street. Deirdre hasn’t the heart to say no, though she loathes the place. P telephones Deirdre to ask if she will take her and Eve to the market Saturday mornings or to other places for shopping on Friday nights. P telephones Deirdre just to talk, for an hour or more, at least weekly. Same with me. I’ll get a call late at night asking me to come over. It’s an hour-long return trip for me. I am expected to be present when M’s brother is told the truth about the illness. I don’t know whether to think this is fair or not: since my brother died of AIDS, and they know this, I suppose they felt it would be easier with me around. I am counsellor and surrogate father as well as home help. The next day I take Eve to the dentist and then to school. The next day I am several hours with M after his father had rung to interrogate him about his sexual preferences.
Dear Morris, … your holiday. Deirdre is desperately in need of one. Those of us remaining are all headed that way, but Deirdre especially because, as you know, she was involved with ‘Themselves’ (as we have come to call them) since long before the team was formed. Marg and Chris (I think they joined the team after you—did you meet them?) want to come, too, if only to escape M’s silences—it is really remarkable how little he reveals of himself, especially now, when you’d think that he would stand to lose nothing and gain everything from opening up a bit. It is really a kind of torture. —For us. I’ve just had the thought that maybe he is coping a lot better than we are. Maybe he’s the only one who’s really got a handle on the situation? We’ll never know if we’re waiting for him to tell us. Though Douglas has only visited Themselves a couple of afternoons, he, too, has started to become worried about the way P is treating the kids. I can’t sort that out now—I’m too tired. Deirdre and I are each spending about 20 hours a week with Themselves, and that’s plain bloody ridiculous. The area group leader says there is no one else available to lighten the load. Thinking about joining you. Love, Jim “Hello, Henry. This is Jim. How are you?”
“Well, thanks. Busy, of course. And you?”
“Got a few hours to spare? It would take that long.”
“I know it’s been hard. We’re all… we’re all that way now.”
“We could really do with an extra person on the team. A few have dropped out, you know—effectively dropped out. They’re just not turning up to do their bit.”
“I’m sorry, Jim, there isn’t anyone else at the moment, but I know your problems. Hold on for a while longer and we’ll see what we can do.”
“You know Adam has left the team, too, after his mother died. I don’t blame him for that. He wasn’t up to it any more.”
“Yes. I heard. It’s sad.”
“P is calling on Deirdre and me all the time for all sorts of things. The family is really up the creek.”
“P isn’t your client. You have to get that straight with her. M is your client, not the whole family.”
“Oh, come on Henry! You’ve got to be kidding. You know this is a special case…”
“Look, what do you expect me to do? You’re on the team. I’ve warned you before not to get involved emotionally. I’ve got seven teams to co-ordinate and they’ve all got problems.”
“You have not given us any such warning, and what sort of remark is that, anyway? How can we not get involved?”
“You’re not taking on the whole family!”
“How do we manage that?”
“I’ve been telling you since last November that…”
“November? I’ve been on the team since January twenty-eight. What’s this about November?”
“I’ve been telling you since … “
“Who have you been telling? I’m sorry, but I don’t remember hearing anything from you, unless we count what is said about the team behind our backs at area group meetings.”
“Nothing is said behind your backs. You’re supposed to be at those meetings.”
“Deirdre and I have got no time or energy for all the meetings when we’re with our clients all week…”
“Client. You have one client.”
“We’ve got four clients, two adults and two children, and the rest of their family.”
“You’ve got one client.”
“Oh, this is ridiculous. We’re not getting anywhere.” Dear Morris, … I don’t think I like what the whole episode told me about myself. I like even less what it told me about some other people. It’s done now, anyway. Both Adam and Henry have resigned. Did you hear what happened to Adam? It’s terrible. He went to one of those weekend things for team leaders—rest, recreation, and getting stuff off your chest about how things get done, or don’t get done, as the case may be—and had a good time. When he got back home he found his mother dead. We have all tried to console him. He can’t stay any longer. There’s something about this, about the way it happened, that hits at the rest of us. Deirdre asks me whether any of us still have a life of our own, whether we realise that our own lives have to keep going on—knowing that the answer to both questions is no. Now I am going to have to swallow at least a few of the bad things I’ve said about Henry, because before he left he arranged with the new area co-ordinator to have a new person—Mark—put on the team as a ‘carer for the carers’. This is a good move … Anyway, I hope you get the feeling that I think this is great. I’ve spoken to Mark several times already and feel a lot better for it … I have only gotten half way through a planned two weeks’ rest from the team, and the urge to return has beaten me. Something to do with the weather. Violent gales, freezing mornings and rain all week. P has the flu (so do two of the team) and her children are home. I have put a casserole in the oven and called to say I will be over to take the children to a movie for the afternoon. No protest. They are always in need of relief. … picking up my report a week later, M has deteriorated quickly under the influence of a worsening chest infection. He slept through my visit, workmen banging in the flat above him, and the television on full blast. Nothing seemed to wake him except his own coughing, and perhaps he can do that in his sleep. I feel we should be keeping a team journal that we could pass on to the Council’s training people. The training of new volunteers is going to have to come to terms with the increasing number of married people in need of care. You learn a lot in the support training, but almost nothing about the kinds of things we have had to do—which is, basically, how to keep a family together and safe when it is suddenly without a father. … They’re on the eleventh floor up there. All the balconies have been closed up to stop people jumping off and messing the footpath. When I arrived I discovered one of the glass panes of the balcony outside Themselves’ flat had been smashed, and there were slivers of glass almost the entire length of the walkway. It had been left like that for two days. I cleaned it up. I really get sick and tired of being told that this has nothing to do with caring for the patient. It has everything to do with him … Jim
… P and M first met Hans in hospital when M was in there for a dose of Bactrim and rest and Hans was visiting his lover. Hans’s lover has since died. Hans is very handsome and fit and tall and blue-eyed, oozing sexuality. P is very attracted to him, and cannot hide the fact (not that she wants to), even from her husband. I can see the reason for the animal attraction, but don’t know why P falls for men whose preferences do not favour her more clearly. What is she looking for? M is naturally very angry with P’s performance with Hans; or perhaps it is straightforward jealousy? … M is feeling well enough to go out, so Deirdre and I drive the three of them, M, P and Hans, to a pub where there’s a band playing. Deirdre and I leave to go off by ourselves, finding somewhere quiet to get pissed (which I believe we are doing more and more of these days!). After a couple of hours we’re quite happy and decide to go back to see how the others are getting on. P’s abuse of Deirdre is astonishing. “Who do you think you are, jumping on Jim without telling me?!” She wants to know everything everyone is doing, with whom, when, and how often; and she asks me straight out, later, whether Deirdre and I are having “an affair”. “You’re guessing. Anyway, no.” Before we leave, P tells me she is in love with Hans.
… I have given Eve many children’s books unused by my children for a long time. No one will read with her except team members. P interrupts the reading continually. I will not stop until I have finished the sentence I am in. She doesn’t like this … There is a nut missing on Eve’s little bike, and I point this out to P, saying that I will fix it tomorrow. “She’s a little bitch. She does it on purpose, you know.” “I don’t think so. It’s not her fault, I’m sure.” “You shit of a child.”
… P told me this afternoon that she can feel something moving in her uterus. “Something is kicking or moving down there!” She also says that she’s been on the pill during Hans’s visit, in order to be period-free.
… Hans has found a ‘new love’, a new man in his life. The penny dropped on P the other night when Hans was over for dinner. She rang Deirdre this morning, miserable, depressed. “I dinn’t ask for all this. I don’ need this trouble as well.” I went over this evening with a bottle and tried to cheer her. M is being difficult and short with everyone, but especially with P.
… Themselves have gone on a holiday to visit Hans in Adelaide. Isn’t this amazing?! M took incredible doses of Bactrim and other stuff to suppress coughing, in preparation for the trip. P returned with hideous souvenirs for Deirdre and me, things that I suspect were the produce of a sheltered workshop. “They’re lovely!” we said in unison, smiling.
… P has been on a diet, lost quite a bit of weight and is beginning to look quite attractive (if you are attracted to that sort).
… P and Hans had a great row when she discovered blood on his sheets (from his thrashing and heaving with the new man the previous night).
… What a family. Just think of the men in it, on both sides. P’s brother has been drinking pretty well nonstop since he heard M’s diagnosis. Is it the men who are so pathetic? Is it the women? What is it about the women, on both M’s side and on P’s side, that attracts them to such hopeless men?
… “You’ll ‘ave to stay a day or two more. I’m really too stuffed to go an get you. Your father an I will still look the same when you get back ‘ere. Don’t worry!”
… “I know I told you we dinn’t do anything but that wasn’t true. I did ‘ave my way with Hans when I was there. I know what you’re goin’ to ask—yes, he definitely did wear a condom, though I don’ know how he got it on because he’s got the biggest dick I’ve ever seen on a white man. I’m no longer in love with him. No. I’m not in love with him. I’m over that, I really am. But I still love him, sort of. —You know what I mean. You can’t just have no feelings at all. But I’m not ‘in love’ with him any more. I’m sure of it.”
… Deirdre had dinner with Themselves last night. Dinner and everything else. When she got home she called me. She is very worried about Eve and could not stop crying as she told me of what must be counted as an assault. P strikes like a snake at the child, so quickly there is no chance to beg for moderation. One second Eve is sitting quietly beside Deirdre, the next Eve’s chair is balancing on two legs, about to fall backwards to the floor. Deirdre’s hands are occupied with knife and fork, and her mouth open, as Eve crashes. There is no sound for a few seconds before the crying starts. Eve picks herself up, looks at her mother, and says, “I hate you.” War being declared, the troops mobilise. M gets up from the table, muttering to himself, goes into the bedroom. Deirdre wonders how he has suddenly got the energy to hobble so quickly. He comes back with a brush in his hand. “You can’t speak to yer mother like that!” She dodges him in the living room but gets caught in the bedroom.
“I’ve seen M use a piece of wood.”
“Jim, we have to do something, quickly.”
Dear Morris, … You know the routine. It was all a plot against her. The kids have nits. I took charge, told her to go up to Lygon Street to buy some Quellada and combs. While she was out I stripped the beds and started the first four or five washing-machine loads. Everything. Bedding, shirts, towels, dressing gowns. I hung all the pillows, blankets and doonas in that concrete room they have at the flats. There is not much sun in there, though, and I decided to take a lot of stuff home with me to give them a proper airing. While P was out, her mother volunteered the view that she would “dump” the kids as soon as M died. Apparently the family has discussed it and P’s sisters believe this is what she will do. Betty asked me what I thought would happen. I had to admit the same thoughts had crossed my mind. We spent four or five hours delousing the flat and the children. Marg, our wonderful, absent team leader, returned with a vengeance and attempted to organise Deirdre and me. M couldn’t stand the sight of her, and P rang the area co-ordinator to ask that she be removed from the team, suggesting that someone else—anyone, straight or gay!—be got to take her place. So, Marg’s gone. This will leave Deirdre and me in a worse situation, but we are learning to say no. I have just declined to spend five or six hours minding M at the flat on Friday while P goes to bingo. Deirdre is doing the same. … and the trials of the hospital visits continue. Got M in the car and then went back to get the script from Dr Murray (I think you know him—he’s a good friend) and an appointment for blood tests next week. As I turned to say goodbye, Murray stretched out his arm for what was to be, I thought, a handshake. Instead, I got an enormous bear-hug. M was observing from the car, and when I got back to him he said, “He’s a homosexual, you know. You’ll be all right so long as you don’t take your pants down.” EEEEKKK! … M’s back is extremely painful and he is definitely showing signs of an impending crisis—perhaps within the next couple of months. He’s started coughing again during the night and the candida is flaring up again. He is always cold. Even on mild days he is in his room with blankets and a heater, shivering! Love, Jim Sad today. It’s my twenty-second wedding anniversary and, at seven in the evening, I’m home alone. The kids have gone out to party and Elizabeth is in the Howqua Valley, walking with friends. That’s it, I suppose.
… undoubtedly flattered that she is still attractive to men. We all need our egos stroked in this way and it is important to her in her situation. P seems to be saying to Deirdre and me (but not to Douglas), “I need a regular sex-life but I really want it in a permanent and stable relationship.” And why not? The men she chooses, though—remember Hans!? We have a strong sense of entering the stage where we have to help her prepare for the post-M days. That’s what Deirdre and I are currently trying to do. I can only hope that we are on the right track. She is certainly more forthcoming about her feelings, hopes and despairs. (But I wish she’d get some make-up and grooming advice to help her look less like a tart!) … movie about a man emotionally dead but rediscovering himself at the end of an eighteen-year marriage—a bit close to the bone for me. I should have gone to see a porno film instead. P has just rung to give me all the amazing details of her relationship with yet another bloke, this time a Greek trucker. She insists that she is “not doin anythin—a bit a neckin, an none a the in-out.” She says she is improving, and enjoying the limited physical contact. Every visit and phone call she mentions sex and what it will be like after M is gone (in a sort of testing-the-water way). Maybe she is using us to give herself permission to be herself? The atmosphere is heavy with sex and sexuality in this team—always has been. Why? And why not? When we go over to visit Themselves, M is rugged up in exactly the same position he was in when we left him a few days before. He asks where we have been and then listens to the boring details of what we have been doing without uttering any further comment. I watch him as I talk. The eyelids begin to close, as though he is falling asleep. He coughs up some deep yellow muck—and his eyes are open again. I continue talking. At these times I wonder whether he will, one day, just die in front of me, quietly, unnoticed, while I describe my groceries. I took M to the hospital for a blood test and checkup. He has no T-cells left at all. He asked for “Morphine, poison or something” to relieve the pain. On the way home I broach the subject that has been on all our minds, the funeral arrangements, asking him what he would like to happen. He shrugs it off, saying “No fucking priests. Ask P about it.” I bought Themselves some new pillows, as instructed, and took the receipt to the AIDS Council, where I was told the promised refund would take a few weeks—glad I’m not on the dole and desperately in need of money! Themselves were no more thankful. The covers were ripped off and the pillows put on the bed, without a word. Feeling miffed, after being asked how much they cost, that I hadn’t been thanked for getting the bloody things, I took one out to M for his approval. “It’s only a bloody pillow, isn’t it?” he snarled. Herself was sipping a tea I had poured her. “Jesus bloody Christ! What’ve ya done with the tea? Dinn’t ya scrub the pot out? I haven’t used it fer days—the bags were probly mouldy!” Feeling seriously used, abused, misused et cetera, I made her another cup of tea (tea bag in a cup this time). —And then I cleaned the pot. … Understand that I am not paranoid; it’s just they’re all out to get me! I’ve a raging dose of thrush or tinea or something—down there. I’ll screw Deirdre’s neck, as soon as I stop scratching. Am I boring you terribly with all this? Mmmm. Thought so. Yesterday P predicted that it would all be over in a week. Wife’s intuition, maybe. Love, Jim
The phone rang at half past three in the morning. Betty told me that M had “passed away” four hours before. I was not needed. The body had been removed and the kids were still asleep. The family were all together and “in charge”. Don’t come over. “Ring before you come, to see if it’s convenient.” The family closed ranks as it never had before.
At four o’clock, after making some tea and toast, sitting in the kitchen, it was still dark outside. I telephoned Deirdre (it was her birthday) and Douglas.
Dear Morris, Thank you for your help and all your encouraging comments. You don’t know how helpful it has been to be able to write these letters to you. Writing is not enough—to write to someone is important. God knows the team has not had help from any of those who should have given it. There are more grievances, as you might have guessed, and much anger. I will take my time.
Though the AIDS Council was informed of M’s death within hours, weeks have passed and we have not heard a word from them. We all feel abandoned and adrift. I could kill. I went to a florist in Fitzroy to arrange flowers from the team. After writing the cards, the nice old queen who runs the place looked at my name, then my face, and said that he knew my brother so there would be a discount. I left quickly, went and sat in the car and cried like a baby. When I visited P she was red-eyed and talkative. “Oh, Jim, it was terrible. Jus’ terrible. ‘E ‘ad these awful seizures an ‘is eyes rolled up so there wuz nothin but white there an I dinn’t know what to do. I jus’ dinn’t know. I called the Nursin Serfice after the secon one an all they did when they did come was tell me it was jus’ the fuckin medication an that was it. That’s it. That’s all ‘e said. An ‘e started to give ‘im a shave an a wash to make ‘im comfy but ‘e looked up an said if they fuckin moved ‘im again ‘e’d punch ’em. There was nothin to do, really. ‘E ‘ad anuffer seizure, almos’ jumpin, ‘is eyes went again, all white, so that even the bloody nurse was frighted out’f ‘is fuckin wits. The useless thing left soon enough an I made a cuppa tea. … I wen’ back inta the room an ‘e lifted ‘is ‘and as if askin me to do somethin for him. I got there. I jus’ got there an had ‘is head in me hands an ‘e sighed an that was it. That’s all. I spent some time with ‘im alone, thinking. An after a while I called the nurse back and we dressed ‘im in ‘is suit with a shirt an tie an called the funeral parlour. The kids were asleep. Slept through all of it. It was quiet an the nurse dinn’t say anythin. I called mum, of course. She’s been really wonderful, ya know. An she came an sat with me while we waited. Then they jus’ took ‘im out. I dinn’t wanna wake the kids. That’s all … “ Deirdre was mad, having also been told she should call before she went over, to make sure it was ‘convenient’. “Fuck them, Jim. It’s never been bloody convenient! We’ve been there all along while the family just ran for cover.” We decided to go together, defying anyone to ask us to leave. The day before the funeral we arrived unannounced, with quiche, pie and flowers, which had the effect of thawing the icy stares we got from mother and sisters. —After all this time, to be less welcome than a pie! The next day I was up at quarter past five in the morning, unable to sleep. I worked in the garden for a couple of hours, emptying the compost bin on my vegetables. Later in the morning Deirdre, Douglas and I met for a drink before going to the service. A lump in the throat when I saw the children and the coffin. P was tearful. During the service the priest mentioned that P wanted the nurses thanked by name. When no mention was made of the team Deirdre turned to me and said, “I want to go.” “No”, I said, as I held her arm, “he hasn’t mentioned the doctors either, or the home help, or the health aide … “
On the way to the cemetery Marg and Douglas discussed the costs of male prostitutes, and the risks, and whether the boys practised safe sex with ladies from one suburb and gentlemen from another. She pontificates about married men who… “They should be one thing or the other. They should make up their minds. They shouldn’t sit on the fence.” Too many shoulds. I gave her the lecture about the Range of Human Sexual Expression. Will I ever learn? She will not be satisfied until I admit to fucking every married man I know—and a few I don’t—, to interfering with little boys, and to giving M the virus. Somewhere, feeling mad, I said, “And what’s wrong with a friendly wank between mates?” I don’t know who was more shocked—Deirdre, Marg or myself! The question stands. Sod her. P told us, when we got to the cemetery, that the priest had advised her against mentioning the team. “So when they continued asking him, he lifted up himself, and said unto them, He that is without sin among you, let him first cast a stone at her. And again he stooped down, and wrote on the ground. And they which heard it, being convicted by their own conscience, went out one by one, beginning at the eldest, even unto the last: and Jesus was left alone, and the woman standing in the midst.” The significance of this story was lost on them, of course. Himself’s family hastened to position themselves at the front of P and the children. Insensitive, phoney. The father, who had only seen his son for thirty minutes in the last two years, struck a ‘pillar of the family’ pose. A certain amount of ceremony concealed hostility between the families. Venomous? Once it is written here it is finished. —And thank you for listening. What a day it was. Later in the afternoon I went to my weekly marriage guidance session—alone. And in the evening there was an area group meeting. Douglas announced his resignation from the AIDS Council. I think I will do the same, but not yet … I still feel, after all this time, there is a lot unfinished. Gaps needing to be filled. I’m very tired, despite getting lots of sleep. I have not known what more there could be for me to do. We learned how to be part of the family; loving, hating and caring more strongly. I have to learn how to be a stranger again. Uncle Stranger. Leave the gaps in the names unfilled. I won’t know what sort of person P becomes, how she will write herself. M? He was always unfinished. But I’m grateful that, because of him, I met Deirdre, who taught me to be sexually OK again; and because of him I met Marg (sod her), who taught me that I can’t be all things to all people, and I don’t want to be; and because of him I met Morris, who helped me find the spirituality I had lost in my life; and because of him I met Douglas—bless him—who taught me that I can ache for people who are graceless, but people, nevertheless. … Deirdre and I played the message you left on her answering machine several times over for the sheer pleasure of hearing your voice. Truly! We’d had a belly full of Themselves that day and when we returned to Deirdre’s house, with carnal intentions, you were waiting for us. You never imagined that what you said could be so much like music and accompany us in our fore- and after-play…
This story was originally published in Meanjin in 1992 and 1993.
… Life consists Of propositions about life. The human Revery is a solitude in which We compose these propositions …
Before any of these events happened, the story of them happening was already written. From the very beginning the story was in the hearts of its authors, and through it they made themselves and nothing that they are was made without it.
Dear David, a long time ago I promised to tell you the story which would explain our families to you — hoping that, by hearing it, you would know where you came from and who you are. Now that our grandmother is dead and our grandfather near death it is safe for me to begin to write it down. It is the story of how everyone’s story begins and ends in another story, and it is an answer to the puzzle of its authors’ unhappiness. It is also, of course, not a story at all but an understanding of how the many stories which have made us can also un-make us. In giving this understanding to you I must tell you all the stories you already know and which you told me. You never explained why you were absent on the day our grandmother died. Here is the story of that day as I saw it, one end of the story I am beginning to tell.
I was at work when my mother called to say that I should come quickly, before the body was taken away.
I left without turning off or locking anything and caught a cab. I was angry with the Arab driver for not being able to understand the name of the street, which I repeated several times, each time more angrily. “Are you at work?” “No. A member of my family has just died — I’m trying to get to the house.” He drove more quickly and when I arrived my cousin, Robby, was walking across the lawn outside his mother’s home. We embraced quickly and I went inside.
The daughters were still weeping in bursts and waves: my mother in the bedroom, alone, where she told me that I was too late — and sorry that I had missed seeing my grandmother before she was taken away; and my mother’s three sisters — Emily, who looked sweetly calm but could not stop cleaning the kitchen and benches for fear that if she stopped she would have to cry; Patricia, quiet and confused; Anna, hypnotised by the telephone which did not stop ringing and by the valium she had taken to slow her thoughts. Grandfather, too, was composed — more than I would have believed possible. No one, though, was relieved enough by the suddenness of Nan’s departure to be happy with the performance of the ambulance men who had ambled toward the house and apparently made no attempt to revive her. The conversation at the kitchen table retold the details for each nephew and niece who arrived through the afternoon.
She had been in hospital for tests during the week and the doctors had not been able to find anything wrong which would explain her complaints about loss of consciousness and dizziness. “They told us to ignore her if she held her breath again.” She decided on Friday that she wanted to come to see her husband. They had been living apart only because both were ill and neither strong enough to take care of the other. She got out of the cab, putting her walking stick, coat and bag on the sofa in the lounge room, went into the kitchen to have a cup of tea with her husband, Emily and Anna. She was laughing and smiling. After twenty minutes, at about half past eleven in the morning, she turned her head to look at her husband and then collapsed forward at the table. Anna put her hand out to catch Nan’s chin. When Anna opened her mother’s eyelids she saw that the eyes were pointing into the head. “I knew then that she was gone.” As the story was retold people commented that it was good to go suddenly and without pain. “She must have known.” “I thought she was still alive when she was lying on the bed and her chest started to bubble as though she were breathing.” “Yes, that happens.”
The grandchildren, my cousins, turned up one by one, Shaz first, with her three children, one newly born. They disappeared soon after arriving to cry in the bedrooms. From the kitchen we heard them sobbing. Sean was second. He did not stop crying all day and was inconsolable.
I stood at the sink. Emily cleaned things. Nan had been staying with her during the last few weeks. “I heard that she was really happy with you.”
“You’re the only one who’s said that. Thank you.”
Anna stood beside me, in a moment between telephone calls, and said “There is a God.” — And later, sitting at the kitchen table, she said, “I was down at the clothes line this morning and I begged Him to find her a home. Please, God, find my mother a home, I said to Him. And He has answered me. There is a God.” She cried and it was only then that I cried, too. I could not be sorry that she had died when for her to have lived and to worry about her was a continuous torture for Anna.
Late in the afternoon an arctic and bureaucratic minister arrived to make arrangements for the funeral. He spoke for a while, by rote, of the difficulty of coming to terms with the death of a “loved one”, and in sentences easily transposable to suit the loss of anyone or anything, wife, mother, keys or cat. Listening to him ask questions about the family, how many daughters, how many sisters and brothers, when was the marriage, where and why, I almost forgot what had happened to us and why we were crying.
No one was prepared to or could be bothered cooking. People put cold chips between pieces of bread and ate slowly, out of an obligation to eat.
Grandad was put to bed slowly. There was a pill for him to take if he needed it.
Robby drove me home. I had been falling asleep whenever and wherever I sat. Still, when I got home, I could not sleep when I wanted to. I telephoned David, Patricia’s son, my cousin, because he had called me during the day and left a message. “Come on, Johnny. I haven’t seen you in such a long time. We’re just sitting around here, having cups of tea. Sean is here, and Shaz. We can’t sleep either. Come on over, please. I want to see you.” I went.
Sean had not yet stopped crying. His fat body and weepy eyes now looked more comical than sad. The others, less determined to be grief-stricken or less feeling, were content to reminisce with lukewarm tea.
Later, as the children were put to bed, all the adults affirmed their intentions to keep in touch with each other and, as they did so, reached for their coats; beyond arrangements for the funeral, they knew there would be no reason for anyone to meet or speak.
Months after this I learned the reason for Sean’s distress, or what I have told myself is the reason for it. His mother, Emily, was unable to cope with having her own mother in the house with her. You can imagine what it was like. Emily had told Anna that some new arrangements would have to be made to accommodate our grandmother. Sean was aware of this problem and has blamed Emily for his grandmother’s death ever since.
Emily fears some truth in the accusation. Sean is ashamed to have spoken it. Anna remembers that she prayed for release and was released. It is only in those moments they are exhausted by self-accusation that the truth can be heard and their own voices tell them one fact cannot have so many reasons. — She is dead and there is the end.
Late that night, on the day our grandmother died, which others took to be an end, was only the beginning for us. You had been in prison for more than a year and I at my desk with a typewriter. We had both been unhappy. A man can lose himself in too much freedom or through lack of it. When we went out that night to drink and talk, for the first time face to face in ten years, the dream I was in while listening to you speak showed me how I would find myself. You were lucky, you said, to have such big veins. There is now hardly any mark there.
“I was lucky I had big veins that stood up and were easy to find. You can still see a scar there … In the drug rehabilitation programme you’re allowed to just sit at the back and listen for the first few times. Then one day the guy just came up to me and handed me a texta and showed me to the board where I was supposed to write down everything about all the drugs I’d taken and what was happening to me when I was doing them. And when I was finished he went up to the board and divided my life into four clear parts. Basically, all stuff about my father … You even tell them about your dreams. I told them about my junkie dream where I put the needle in my arm and I miss. If you miss the vein you don’t get the rush in the head, it comes on slow and it’s like you’ve been done out of your money … I was punishing them by punishing myself … When I was a really young kid my bastard of a father promised me that he would buy me a rotten radio-controlled airplane and he did one day, and he got the thing out of its box and we went down to the park where he tried to get the thing to go. It wouldn’t go, no matter what he did. He got angrier and angrier and finally crashed it to pieces on the ground, poured petrol over it and set it alight. It went up in flames. I cried. Of course, by the time he got to telling the story in the pub to his mates it had changed quite a bit … There were other things. I can’t remember. You’re quite right though, Johnny, like you said in your letter, he has punished himself. There isn’t any need to be angry about him any more. I’ve got my son, Matthew, from that bitch, Zara, and all I want is to give him what he needs as well as a bit of what he wants. I’m spoiling him, I know, but I love the little bugger … I started with my friends, the peer thing. You know. But then it turned into something else. It’s a weird life, Johnny. The cabbies get to know you, you know, so that eventually they won’t come to pick you up when you want to get somewhere. I don’t blame them. I used to go somewhere in a cab, trying to score some shit, and just get out and walk away. I didn’t know what I was doing. Sometimes I used to get into cabs with the stolen video under my arms. Fuck. They must’ve laughed … The ones in prison are the stupid crims. I was stupid. I was always getting caught on the scene with the video under my arm, or else I’d get into a place and just fall asleep on some poor bastard’s couch. It’s fucken stupid, Johnny, I tell you. The last time it was for getting caught stealing shit from a guy who was a dealer and he got up in court and played the good citizen, saying that he’d had all this jewellery and stuff stolen from his place, but it was nothing like that. I was scared when I was in there. It’s a bad fucken place … The first day I was in the remand yard, waiting to be transferred, a guy was holding something in his hand — it was wrapped in paper — and he walked up to this other guy right in front of me and stabbed him in the throat. Jesus. It’s bad. The guy survived. The screws took us up one by one and asked us all what happened. I just said I didn’t see anything — I was in the showers. There were eighty fucken guys in the shower that day. No one saw anything. So this screw asked me if I would say anything even if I had seen it, and I said No — don’t be stupid, and that was it … It’s best not to make friends in there, not to get involved in any of that shit. I just stayed to myself, did the weights in the gym till I had sixteen inch arms, acted tough and they left me alone. And they knew that my father had some heavy friends outside, and that helped. Some of them get in there and immediately start sizing everyone up — I’m tougher than him, but I’ll stay away from that guy — the top dog game. It’s no good. Someone’s sure to get you if you start doing that sort of thing — they’ll size you up and take you on … When they put me in the cell I heard this hammering on the other side of the wall and a guy yelling. He came out, still conscious — I don’t know how — with holes the size of twenty cent pieces in his head and covered in blood. Shit, it was awful. And he walked down toward the stairs. I don’t think he knew where he was going. And this crim who’d arranged it came up to him with an aspirin saying, ‘Looks like you got a headache, mate. Here, have this.’ … Most of the stuff that comes into the jail comes in up crims’ arses or inside their girls. If she turns up and doesn’t have the stuff in her, the guy tells her to piss off straight away as though he doesn’t want to see her. It doesn’t count as a visit until after five minutes, so he can get her to come back until she comes with the stuff. And there are a couple of corrupt screws, especially that one who got caught, Ps, he was a real fucken dog. You can tell how it’s come in by how big it is. I saw a slab of dope so big it couldn’t have come in in anyone’s arse, not even if you’d been fist-fucking — it must’ve been a screw … They say that the crim who’s getting sucked isn’t queer, that it’s only the guy with the dick in his mouth, but I don’t believe it. A guy doesn’t do anything for me. You can’t just close your eyes and make it work like that. In the dorm they have one bunk down the end with blankets up around it and everyone knows what’s going on inside it. I used to just sit down the other end playing cards, really fast. This one guy, I feel really sorry for him, the poor bastard — I don’t want to say he was asking for it, but he would suck anything and he had both hands going, and you can’t do that if you want any respect — almost everyone would fuck this poor cunt. Someone got one of those kitchen things full of boiling water and poured it over this poor bastard in his bed. When they pulled the blanket off him all his flesh tore off with it. Shit. I was sick. That was the worst thing I ever saw … You’d have to be really fucken stupid or really fucken hopeless to want to go back there. I don’t want it, Johnny. It’s not for me. I’m doing OK on the methadone — it’s really good for me. I feel good. I just want to be with Matthew now, sort a few things out. I’m not gonna make that mistake again. I’ve gotta keep my head for Matthew’s sake, Johnny.”
Even as you were speaking I dreamt of God’s needle.
“It’s a headless world, David. People walk around without their heads — at some point they’ve decided that they don’t need them any more and have done a violence to their own lives, thinking it doesn’t matter that they no longer think — without their heads. It’s no wonder nothing gets said that makes any sense.”
I slept through Saturday, still dreaming. I must have dreamt and must have woken but I can’t remember of what or when. Then it was Sunday and then it was evening; and I was trying to sleep, to forget and to sleep, and to forget what was preventing sleep — my dream of needles.
… “Mmmmm” — I remembered her becoming a child again as the strokes destroyed her memory and her ability to connect one thing with another. “Mmmmm”, she would hum with a lolly in her mouth, as if sweetness were something new. For twenty years I have loved to touch the soft, flabby flesh which hung from her old arms — and putting my head there, it was like resting in down. — And her cooking, in the tiniest kitchen I’ve seen, a meal that was spread twelve feet along the Christmas table. — And her smile, awkward while being photographed, the colors of the flowers on her dresses which are still there, in all our photographs, and packing bags and waking early to drive through the dark and the fog to Castlemaine where she lived with her husband, and the colors there, the wood stove, the table dusted with flour, and the story of how she and her husband made love in the last ten minutes before he went to the war. Oh, Jesus. O, God, why are you doing this to us now? We praise people by how much good there is to remember of their lives and there was so much and what good has it done her all that praying? Nothing. I’m not going to pray. I won’t pray ever again. Should I be saying to myself this is good? Yes. I’m glad she’s gone. For Anna’s sake — made weak by caring for them both, this will make the burden lighter. Or, No. She was the only person I knew who went in a covered wagon when she was a kid with her brothers and sisters. And the photo — torn down the side — of her in a long dress and her hair tied back for work at the boot factory in North Melbourne where Grandad saw her from high up in the flour store of the bakery and said “I’m going to marry her”. There’s a joke: how the needle came down when he said that, and it went straight in the vein, and what he had planned came true. It doesn’t always come true. It doesn’t always come out the way we plan, and we miss. That life, I see taking its whole form, now why do I want to take its end away from her: its sweet end looking into the face of her husband so long, from beginning to end? She sang, “There was a little girl who had a little curl right in the middle — right in the middle of her forehead.” “When she was good she was very very good and when she was bad she was horrid.” “Horrid.” O, God. Why? We wouldn’t have gone to those Christmases and everything, the sun, huge, the neighbors watching through their windows our lengthening table, year after year, Castlemaine, Preston, Sunshine, the chickens in the yard and the dunny where she told us the redbacks hid, we wouldn’t have gone. No. We wouldn’t have gone. Everything we are she was and how will we tell where we came from now? How will we tell? This small woman. My head is … O, God, my head is bursting. I watched the skin under her arms fall, soft, down, like down, feathery and soft in them. Why? Gone. God. Why, if You are going to deal, do You get out the needle and miss the vein? Why are we, this dream? It comes on slow and my head aches. Fuck You. Why don’t you give it straight, put a date-stamp on it or something? Fuck You, You bastard. Fuck You …
What is the story through which I have made myself? I am ashamed to tell it.
David, you know that my parents separated when I was very young. Even a young boy tires of asking Why? and before long any answer will do. — My whole life has been the story of unworthiness: I am a man who could not be loved. And it was through this story that I made myself and nothing that I am was made without it.
My mother has a new child. The little girl is ten years old. I will admit that I have envied her, envied them both, for having what was taken from me. And I admit, also, to believing with my whole being that the reason for this child was to correct the error of bearing me: this sister was my nemesis, which my mother made to punish me. Even in the crib she appeared as one who would threaten my existence. Near the end, I was consumed with hate.
That story made me and the one that was to follow un-made me. I had suffered too long with hatred and in silence.
A woman’s face can change in a way a man’s cannot. The change changes her. This is not a shallow change but one which reaches into every muscle and bone so that nothing of the way she lives and speaks is like it was before. And this is what happened to my mother.
On the day our grandmother died I saw my mother’s new face. It is stupid to say — but true — that, even in her grief, she glowed with life. It was only with this light in her face I could see my hatred was wrong.
Later, I confessed my envy and she, in return, told me the story of her life: that, when she was young and I was a child, my father was a drunkard and beat her; that, being young and stupid, she thought her whole life and freedom waited for her if she would run away; that she left me and that this was a mistake; and that she now endures a man as bad as the first only to redeem herself, to prove to herself, and to me, that love is possible.
It is hate that causes suffering, David, and love which returns us to the world.
I am almost at the end and there is only one more story to tell. It is the story of our grandfather’s throat.
Fifty years ago our grandfather’s brother, it has been said, abused a little girl, his own daughter; and, sitting in her father’s lap, she did not utter a sound when his finger entered her. Caught in this moment, his hand hung dead from its arm even as he pleaded it was innocent.
Men listen to this pleading with a panic that comes from knowing where desires could lead them.
Our grandfather panicked, too, closed his mouth and feared he would be tainted by his brother’s act.
After this, all his daughters made their plans to marry quiet men and hoped that marriage would make their husbands speak. Out of these men’s mouths, they thought, would come the words their father never spoke. Or, perhaps it was not a word the daughters wanted, but a feeling or an openness that had been denied to them.
All four men were steadfast, though, and took more easily to drink than talking.
No evil word ever came out of our grandfather’s mouth, nothing bitter or false. Haven’t we always thought of him as one above reproach, so that now, when he is old and ill and has the habit of being unhappy with everyone and everything, it is easy to forgive him for being slightly mad? — It is only because he is afraid of dying; and that will happen to us all.
— And it is difficult for him to swallow past the cancer in his throat, caused, I think, contrary to the doctors, not by smoking but by silence.
Are there any stories left to tell? I can tell you, David, because I know you will understand — there is no end to the reverie. Are we, even now, out of words?
I think of you often. I was angry when you returned to your prison. How can a man bear so much hatred of himself? I send you my love and the hope that, one day, you will need to be free.