The first thing though was to get himself and Celeste back on their feet after the disastrous affair of the Fiat 124 and so he had to depend on local merchants and friends to give him their printing work before he branched out on his own. Unfortunately, the local butcher, estate agent and whoever else he could persuade that they needed the odd stationery requirements or advertising leaflet paid very little. But it was a real contribution to the household expenses and Damon became most anxious for Celeste to give up her telephone work at Ratshit International. Celeste, who was more acutely aware of how impecunious their life was, hung on to her job, though she hated it. She promised that she’d give up when Damon got a big order and the cheque actually arrived.
The heat of late summer finally slipped into autumn, a time in Sydney when the days are bright and cool and the humidity disappears altogether. These halcyon autumnal days are God’s special gift to Sydney people and they coincided with the first three months spent in the Glebe house. They were to prove to be the last time Damon would have to contend only with his haemophilia; the last time, in Damon’s strictly limited definition of physical wellbeing, when he would be well.
The house was filled with laughter and fun. They’d put on instant plays, argue late into the night about music and life and then drink flagon wine and play chess until the early hours. Chess had always been Damon’s way of getting even with his more active friends. He was a very good player in a houseful of pretty good players, the best after Damon being Sam, who lusted after Damon’s chess scalp and who was good enough to win an occasional game. This would make her even more determined to best him. Damon was a natural player and the others all started getting into chess books and really learning games in an effort to beat him. But for the most part they were beaten by a player who played by instinct and who had, over the years, developed a depth of concentration which would allow him to out-think them consistently on the chess board.
Damon’s jobs always seemed to be small ones and Celeste was forced to keep her spare-time job. With the loss of Damon’s city job, their combined income was severely reduced and his desktop publishing career was still in its capital-intensive stage when it required reams of paper and the software Gareth Powell wasn’t able to supply. With the extra money Celeste earned doing research questionnaires over the phone they only just managed to stay afloat. The others were no better off and so mostly they made their own fun. This was helpful for Damon, who was less and less able to go out for extended periods; a trip, even to the movies, would generally bring on a knee bleed.
Celeste, determined to be Young Housekeeper of the Decade, was learning about food and they would go to the nearby fish markets on Saturday and shop carefully at the adjacent fruit and vegetable stalls, so that, although the food they ate was plain, it was fresh and good and there was always enough to eat in the house.
The weather turned cold and Damon came home to visit us and to load up with blankets and a doona. We were surprised to see how much weight he’d lost in the month or so since he’d last visited. Always rather skinny, he seemed to have lost almost half a stone and I took him through to the bathroom to weigh him. He saw the concerned look on my face as he stepped off the scales. “It’s probably because we don’t eat much meat, Dad. We have fish a couple of times a week, but mostly vegetables. I’m fine, I really am. I’m not having nearly as many bleeds since I left work [a fib] and I’m really very healthy.” Damon had lost seven pounds, though he seemed quite well and despite my urging that he try to put on a little weight he continued to insist that he was healthy as anything and feeling exceedingly well.
“Have you been doing your swimming, Damon?” Benita asked. Swimming was the only exercise Damon could undertake with some safety and Benita was constantly at him to use the heated pool at the Royal Prince Alfred Hospital. It was where the Haemophilia Centre was located and very close to where Damon and Celeste now lived.
Damon would wake chronically stiff in the mornings, but with the cold weather he would take even longer each day to become mobile and Benita knew he needed to swim to keep his joints as flexible as possible and to keep his arthritis under some sort of control.
Damon was becoming noticeably more lopsided, with less movement in his wrists and elbows and his old limp rather more pronounced. This was the limp caused by the calliper he was forced to wear as a small child and the accident in the swimming pool, but it had become exacerbated when he’d reached puberty and his bad knee and elbow had started to give him a lot of trouble. He was growing rapidly during that period and one or both joints seemed to bleed every day so that it began to look as though he might eventually lose all movement in both. There was nothing we could do until he came out of puberty and his rate of growth began to slow down. At sixteen, in order to retain some fifty per cent of the movement and flexibility in both badly damaged joints, he’d had his bad knee and bad elbow fused. This was supposed to minimise the effect of the constant bleeding into them. In particular, these fused joints needed to be exercised regularly.
When he’d been at home, Benita had become remorseless about his swimming every day. So much so that he’d grown to hate the pool. The constant nagging from his mother (The hated question: “Have you done your swimming?") was about the only thing that would occasionally reduce Damon to tears. It was hard on Benita too. She had no choice but to go on at him and would sometimes demand that I back her up. I’d do so, but in a half-hearted way, knowing how it bugged Damon. Whereupon Benita would burst into tears, “It’s always me! I’m always the bad guy! He’s your son too. Why don’t you help a bit?” Damon’s swimming was a source of constant aggravation to us all so now, when he came home, he would faithfully promise his mother he’d make the daily trip over to the hospital indoor pool, but, of course, he never did. Exercise, any exercise, was extremely painful for him and once away from a mother of Benita’s determination, no matter how ultimately necessary swimming might be, it was asking too much of him to comply with her wishes.
Not long into winter Sam started to win at chess. Damon appeared distracted and his famous concentration seemed to be misfiring. The games were still hard-fought but Sam, to her delight, was beating him more than she was losing. It wasn’t as though Damon was losing interest; he hated to lose, particularly at chess and especially to Sam. At chess he was an extremely bad loser. Chess was his “get even” in life and he was supposed to win.
Then one winter’s night Celeste woke in the early hours. She was bitterly cold and to her astonishment the sheet she lay on and her entire body were soaking wet.
Celeste tells what happened:
“Damon seemed to have some sort of flu, which was pretty unusual for him. Although he had bleeds and his arthritis bothered him a lot, he never got ill in the conventional sense, not even a cold. But he’d gone to bed saying he felt ratshit and was aching more than usual and he sounded sort of fluey and quite sick. He’d also lost a game of chess to Sam, the third in four nights, and he was pretty cranky. I don’t know how late it was, but we both woke up more or less at the same time and, despite the cold, we were dripping wet. I switched on the light and took the top sheet off Damon; not only was the sheet wet, but he was steaming. I looked at him and he was dripping, he was soaked, absolutely soaked, the undersheet was soaked, the mattress was soaked, everything was soaked and I was soaked too, from having been lying next to him, yet steam was coming off his body. It was weird.
“We looked at one another, confused. Neither of us had the foggiest what it meant, we really didn’t! I asked him if he was feeling ill. ‘No, not really, not great, just like last night,’ he replied. I felt his head. He had a slight fever, though not much, certainly not enough to cause this sweating. We were both very confused.
“’It’s a reaction from Factor VIII,’ Damon said at last, though a little hopefully, trying to comfort me. Factor VIII was the stuff he used to inject into his veins to stop his bleeds and occasionally he’d get a bad batch which would cause a reaction.
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p; “’Damon, you didn’t have a transfusion last night,’ I reminded him. Besides, I’d seen him have a Factor VIII reaction: he would break out in a sort of bright red rash all over his body and run a bit of a temperature, but it only lasted about an hour and wasn’t at all like what was happening now.
“We got up, and I changed the bed linen. Damon had a shower and afterwards the sweating seemed to have stopped a little, so we went back to bed. A couple of hours later the same thing happened – we were absolutely and totally soaked again. By this time he’d sweated so much he was dehydrating and he complained of being thirsty. I remember he drank four glasses of water straight off.
“We were totally confused. The sweats came only at night and about three nights a week, though it didn’t occur to us to ask anyone about them. It sounds funny now, but we thought it had something to do with our respective body temperatures and this persistent flu Damon seemed unable to get rid of. I am someone who feels the cold a lot so I’d smother myself in blankets and also the doona, whereas Damon would need only one blanket throughout winter. We tried to convince ourselves that the heat generated by my side of the bed was bringing on his peculiar sweats.
“I know this sounds unconvincing and I suppose we were both scared and didn’t want to face up to the possibility of it being something else, the something else being ‘you know what’. So we grabbed the first explanation we could find without questioning it too closely. I’d place towels under him before we went to bed at night and these would be soaked; he’d wake up and remove the towels and by the time the sheets and mattress were wet it was usually morning. I used to use a hair dryer on the mattress every morning and then, if there was any sun in the backyard, I’d get Andrew to help me and we’d air it and dry it out.
“It was quite awful. His whole body would be dripping and steaming and almost as soon as daylight came the thing would go away. It was weird, even spooky, and so uncomfortable. In fact, the sweats were the beginning of Damon never being comfortable again. He’d wake up cold and clammy and wet from sweating and scared, not knowing what was wrong or what to expect or why it was happening. After a couple of weeks we were both scared, although it never occurred to me that these night sweats were the first real sign of AIDS.
“No, I’m fibbing, it wasn’t quite like that. I simply wouldn’t allow my mind to suggest AIDS to me. I think Damon knew the night sweats were the beginning, but he was also too scared to say so, hoping that by ignoring them they’d go away. The night sweats lasted a couple of months and then as suddenly as they’d started they stopped. Damon was doing a lot of meditation. Only that’s not what he called it, he simply said it was self-hypnosis, mind over matter, and when the night sweats stopped he was convinced he’d made this happen, he’d beaten them with his mind power in the same way he’d controlled some of the worst pain from his bleeds for so many years. Maybe he did beat the night sweats, though every now and again he’d get another one; but they were sporadic and he felt he had them under control.
“During this period of night sweats the bleeds started to get much worse. It was mostly his bad knee again, the one which had been fused. It would bleed almost every day and he was in a bad way, unable to walk, even on crutches.
“For some reason we hadn’t told Sam about Damon’s HIV status. I don’t know why, perhaps because she was a graduate nurse and might know too much or have a funny predisposition to people with HIV. We didn’t want to know too much ourselves, anyway. Sam just thought Damon was having his usual bleeds and, as he never complained, no matter how bad a bleed was or how much pain he was undergoing, she still rushed home at night to challenge him to a game of chess. He’d always oblige her, not wanting to seem churlish, but more and more he was losing. Naturally, Sam thought his state of dismay was due to her triumph. It used to make me mad, really angry, but Damon forbade me to tell her ever.”
* * *
AIDS education clinics were being conducted by the nearby Prince Alfred Hospital which the Haemophilia Centre wanted their patients to attend. The people attending at the clinics were very carefully described as being HIV positive and not as having AIDS and Denise at the Haemophilia Centre finally persuaded Damon to attend. Denise had been the sister in charge of the Haemophilia Centre for most of Damon’s teens and, while he had little or no time for the medicos, he trusted her implicitly. Denise had always been wonderful to him and we all loved her very dearly. Damon simply couldn’t refuse when she begged him to go to one of the HIV lectures.
At the first lecture, during question time, Damon mentioned the night sweats. He explained that he’d beaten them but that he was curious to know whether they had anything to do with his HIV status?
The doctor who ran the clinic looked steadily at him then said, “Damon, night sweats are one of the first signs that your HIV status has moved into the next phase.”
“AIDS?” Damon asked, his voice steady, but his heart was thumping furiously.
The young doctor didn’t answer directly, merely nodding his head in the affirmative and tapping the end of his pen against the surface of the desk where he sat.
Damon was suddenly furious. “Why didn’t you tell me before? Why don’t you people tell us what to expect? That way I wouldn’t have been so confused and worried sick!”
“Damon, I’m truly sorry.” The doctor wasn’t a lot older than Damon and seemed genuinely upset. “You haven’t attended these sessions before, have you?” Then he added, looking around him at the half-dozen people in the room, “But, it’s true, I haven’t mentioned them, the night sweats.” He looked down at his hands. “We simply don’t know what to do. We know there is no known cure for AIDS, so to tell you months, perhaps even a couple of years before the night sweats begin, what you should expect is – well,” he met Damon’s gaze, “it’s likely to cause more anxiety than not knowing. I’m sorry if this has been a wrong judgment in your case.”
He had a point. The AIDS virus is so insidious, it makes itself known in dozens of clever disguises, hiding behind common ailments such as pneumonia, skin rashes, herpes, shingles, thrush, bowel infections, cancer and other nasty ailments. During its initial stages it’s very easy to kid yourself that you’ve caught some sort of wog going around and that, with the right treatment, you’ll soon be well again. AIDS is a little like flicking a dab of icing off a freshly baked cake with your forefinger; then, the next time you pass, another; then breaking off a small piece. And as time goes by, each time you pass the cake, you sample it until slowly it loses its original new-baked shape and starts to look a little battered. More dabs follow, larger pieces are removed and it soon becomes obvious to everyone that the cake is being systematically tampered with. That’s how the AIDS virus works, a little bit of destruction at a time, then bigger bits, then finally the whole system begins to break down.
This early part of Damon’s AIDS coincided with another event, the return of Tom into his life.
Tom was yet another chapter of Damon’s life at Cranbrook, though a rather sad one. He came from a broken home with a mother who seemed to have very little control over him and not much interest and a father, an international television correspondent, who spent most of his time on assignments overseas.
Tom was a lonely child who would often come home to our place in the afternoons after school, along with some of the brighter kids at Cranbrook, to play Dungeons and Dragons and War Games and Damon regarded him as a real friend. He’d often stay over for supper and stay late, as though reluctant to leave for his own home.
“Hadn’t you better be off home now?” Benita would ask.
Tom would shrug, “My mum works late. Can I stay a little longer, Mrs Courtenay?”
“Only if you call home every half an hour.”
Tom would call home and hold the receiver up for Benita to hear that it wasn’t being lifted at the other end. When eventually it was answered, Tom’s mother always seemed quite cheerful and unconcerned, quite willing to let him stay with us and come home when he wished to do s
o.
This wasn’t Benita’s way of doing things and she compensated by always making Tom feel welcome. He was rather pale and never ate very much and she would worry about him and try to build him up, probing for details about his home life and horrified at his admission that, for the most part, he fed himself from the fridge or was given money to eat at McDonald’s or Pizza Hut or get Chinese take-away.
Benita is a lousy cook by almost any standards and by Jewish standards she is outstandingly awful. But for years I’d been going to the Flemington markets at daybreak on a Saturday morning and the house was always supplied with fresh fruit and salads and the very best cuts of meat.
The week-day meals for our kids seldom varied from rump steak and a tossed salad with the meal ending with loads of fresh fruit. What this diet lacked in originality it made up for by being balanced, although their diet probably contained too much meat. Perhaps not; they were growing, they were surfers and they seemed to need a high protein intake.
Once a week Benita made a spaghetti bolognese which, by all the known standards of this ubiquitous Australian stand-by meal, was atrocious, but which, for some unexplained reason, Brett, Adam and Damon simply adored. They loved the hard, burnt lumps of mince doused in a carelessly sloshed-together sauce of tomato, onions and capsicum. They even seemed to prefer the thick strands of glued-together spaghetti which sprawled, limp and broken, beneath this horrible mess. Benita’s secret was to throw everything into a large pan at the same time, put it on a low heat and ignore it until supper time several hours later. By the time the meal was ready to serve, a deep crust of burn had developed over the bottom of the pan. This was then scraped out and served on spaghetti boiled for half an hour or so in a splash of tap water. Quite why this was the favourite meal was impossible to say as it was patently uneatable, that is, except by my children who would eat it with glazed-eyed ecstasy, holding out their plates for more. On weekends I’d take over the cooking because I enjoyed cooking and it did have the additional advantage of bringing a little variety into the family cuisine, though nothing I made, no matter how exotic, ever earned the accolades reserved for Benita’s all-time-rotten spaghetti bolognese de la maison.
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