Damon’s eyes filled with tears again. “Dad, please don’t take me to hospital. This transfusion will work, you’ll see.” He sounded like a little boy pleading and I felt a lump grow in my throat. I loved him so much and there was nothing I could do for him. The idea that he might have become immune to Factor VIII was too awful to contemplate. If he had and he survived, he’d be a hopeless cripple in a few months, his body consumed with arthritis. Before the discovery of cryo-precipitate (Factor VIII) classic haemophiliacs seldom made it to their teens.
I pointed at the butterfly needle he’d placed beside the syringe. “Come, I’ll put that in for you.”
Despite himself he sniffed and then smiled, a wan little smile. “Dad, you haven’t put a needle in for two years.”
I grinned, hiding my anxiety. “Watch me!” Then I added, “It’s like riding a bicycle.”
I pulled the tourniquet around his upper arm tight and he began opening and closing his fist, pumping up the vein in the back of his hand. The beads of perspiration stood out on his forehead and his eyes were very bright. “It’s something else,” I said to myself. “It’s not simply his knee. There’s something else very wrong. Oh God, please help us help him!” My heart was beating fast and I fought to control myself, struggled not to show my concern. I was about to attempt to put a needle into a vein, something I hadn’t done for a long, long time and my heart was pounding from the anxiety I felt. I looked down and my hands were trembling.
I messed up the first go but got the needle in on the second attempt. “Not bad,” Damon sighed, trying to be flip but choking back his tears in the process. He covered his emotion by jerking the tourniquet from his arm, the velcro making a tearing sound as it released from his frail-looking arm. Damon had been so proud of that arm. It was fully developed and he’d sometimes flex the muscles and look at it; it was some arm compared to the other parts of his body. Now it too was frail-looking, the muscle tone gone, a small vulnerable arm to match everything about him. I had never seen my son like this before, crumpled, defeated.
I stayed up with him most of the night and by early morning, with the help of a couple of Valium, he drifted into a fitful sleep. On Friday morning he was no better and it was obvious he was still running a fever, though when Benita took his temperature, it proved to be slightly lower than when I’d taken it the night before.
I moved him into our bedroom, on to our double bed, where there was a little more air and where a cross breeze would sometimes pass through the window, across the bed and out of the bedroom door. It was one week into February and still hot as hell and we thought he’d be more comfortable in our room. Damon’s knee was up like a balloon and Benita had propped it up on two pillows to bear the weight. It was too early to call his doctor at the Haemophilia Centre and I left for work a bit bleary-eyed, leaving Benita to call the hospital.
At mid-morning she called me to say that Damon seemed a little better and that his doctor had said simply to watch him, give him plenty of rest, lots of liquid, take his temperature every two hours and attempt another transfusion in twelve hours.
He told her he’d be away for the weekend and if things got any worse or Damon’s temperature started to climb noticeably to take him into Emergency. Denise called soon after to say that she’d alerted Emergency so that, should he need to come in, he wouldn’t have to wait around.
In fact, when I got home that evening Damon seemed about the same as I’d left him in the morning, though he was due for another transfusion and was plainly incapable of doing this himself. A transfusion was a procedure Benita hadn’t ever performed and so they’d waited for me to return to attempt it. I botched it twice and was left with the prospect of getting the needle through a vein in what was known as his bad arm, the arm on which they’d fused the elbow and which over the years had become atrophied. The tiny vein in the seat of this permanently fused elbow was an entry point of desperate last resort. I’d just blown two perfectly good veins, one on the back of his good hand and another inside the elbow of his good arm and now all I had was this very suspect, tiny vein, hardly blue enough to see under the skin with the naked eye.
I could sense Damon was practically screaming with impatience. He was very sick and in great pain and the clumsiness of my two previous attempts was almost more than he could bear. Inwardly quaking, I attempted the new vein, lining the needle up, inserting it, straightening it along the vein and pushing. Thank Christ it seated home perfectly at the first attempt and I completed the procedure by connecting the syringe and pushing home the plunger with such care, lest I blow the vein, that it took me nearly twenty minutes to transfuse Damon.
The tension and the pain was too much for Benita and she started to sob. “It’s okay, Mum. Don’t cry, Dad got the needle in perfectly. It will be okay, you’ll see.”
Damon himself was exhausted and his voice came in gasps. His lips were cracked with the fever he was running from the dreadful pain in his knee. I’d brought a large free-standing fan home from the office, which I placed in a corner of the room and which now swept cool air across the bed where he lay. That night Benita slept in Damon’s room and I slept on the sofa in the living room.
On Saturday morning he was somewhat worse and the knee hadn’t responded to the previous evening’s transfusion. Damon was groaning and in ghastly pain. He seemed to be only semi-conscious and I decided we couldn’t delay it any longer and he must go into Emergency. But he was still adamant that he didn’t want to go and begged me not to call the ambulance.
“Please, Dad, it’s just a very, very bad bleed. They can’t do anything we can’t do here.” He turned to Benita. “Please, Mum, don’t let Dad send me to hospital!” He was crying and the dark hair on his chest was matted with perspiration. “Please, Dad, I don’t want to die in hospital!”
By Saturday night, his knee was so painful that he asked to have the fan turned off; just the effect of the draught of air crossing his knee was too much for him to bear. I took his temperature which had climbed slightly again, but he remained adamant that he wasn’t going to hospital and we spent a torrid night as he got steadily worse. In the early hours of Sunday morning, I called the ambulance and half an hour later it arrived.
But this time simply touching Damon anywhere was painful and the knee was swollen to a size I’d never seen it before. The two ambulance paramedics, one an older man who took control, tried to move him on the bed and he screamed, his eyes panicked and wide with the dreadful pain caused by even the slightest movement. Even as a child I’d never seen Damon scream, but now he was panicked with pain. Damon who could take almost any amount of pain was in such terrible agony I thought he might die. It was dawn on a Sunday morning, Celeste would not call until Thursday, and we had no forwarding address. She was staying in youth hostels and was on her way to Portugal. Oh, God, why hadn’t we suggested she stay, not go away; she would have stayed and I could have made it up to her with another trip, some other time.
Benita began to weep quietly, turning her head away so the two men wouldn’t see her. The ambulance men made the decision that there was no good way to move him, that they simply had to proceed, whatever the consequences. They were as gentle as it was possible to be but Damon’s screams were awful and he bit completely through his bottom lip trying to control his agony as they lifted him on to the gurney and wheeled him towards the waiting ambulance. Outside, where the ambulance was parked, lights were coming on in the surrounding apartments as people wakened to his screams.
They placed him in the back of the ambulance, the younger of the two men staying with Damon. The driver turned to me, “I’m sorry, sir, but we can’t give him morphine, not without a doctor seeing him first.”
He said this apropos of nothing; I hadn’t asked for a pain-killer. Damon had to be very careful what he took and I knew he wouldn’t be capable of swallowing a Digesic in his present state. Besides, nothing we’d previously given him seemed to help in the least.
The two of them were nice bl
okes, salt of the earth types. “Has he got AIDS?” the older man asked suddenly. He looked upset. “I’m sorry, we have to ask you, sir, they’ll want to know when we get him to Emergency.”
“No, no, he hasn’t. He’s had his wisdom teeth out.” I realised at once that this sounded ridiculous. What the hell did a tooth extraction have to do with his knee? “He’s a haemophiliac, a bleeder,” I added. “You should tell them that.” I was confused, calm enough in appearance on the outside but inwardly churned up and in a state of panic. Had I left it too late? I now realised that Damon was dangerously ill. I should have insisted, called the ambulance on Friday night. “No, don’t worry, I’ll be following you to the hospital, I can tell them myself.”
We spent all day at Royal Prince Alfred Hospital where Damon remained in Emergency. His doctor was away but Denise came in, even though it was her day off. There wasn’t much she could do, but she acted as a sort of go-between as we were not permitted to see Damon while they were taking tests. All she could tell us was that something more than the knee was wrong with Damon, but that the pathology tests so far hadn’t revealed anything they could work on.
On Monday morning he was worse, but then later in the day he seemed to get worse again. His doctor, the biro-tapper, had returned and had been to see him and, for once, pronounced himself completely mystified. “He’s very sick, we know that. Not just the knee. It’s a massive infection, but we don’t know what infection.” Then the didactic bastard corrected himself, “We don’t know which infection.”
“How bad is it? I mean could it…?”
“Kill him? It’s possible he’ll die if he gets much worse, but he seems to have stabilised for the moment. (He sounded matter of fact.) We simply don’t know what’s wrong. He’s very sick.” Then he added, “There’s really no point in your staying, there’s no immediate danger. We’ll notify you in plenty of time if things get worse.”
We stayed of course and by mid-afternoon a young doctor from pathology came over to see us. He looked tired and announced that they’d isolated the problem. “Damon has developed a Salmonella infection in his knee.”
I’d once serviced a canned fish food account at the agency and I knew Salmonella was a kind of food poisoning; you got it from, among other things, bad tinned fish. Damon hadn’t eaten any tinned fish; besides, what the young man was saying didn’t make sense. “How the hell can you have Salmonella in the knee? It’s a form of food poisoning isn’t it, doctor?”
The young man nodded, “It sounds weird, I know.” His hair hung over his forehead and he looked as though it needed a wash and a scrub up. His white coat was stained as though he’d used it to wipe his hands. He sighed and held one hand across his eyes for a moment then narrowed the thumb and forefinger down to pinch the bridge of his nose. It was as though he was trying to concentrate, trying to seem concerned for our sake. “That’s why we couldn’t isolate what was wrong, until we started to look for a similar case history in someone else who had AIDS.”
I felt Benita stiffen beside me.
“We eventually found a case-history written up in America. You see, a Salmonella infection goes to the place of least resistance. In this instance it entered through his mouth, through the cavities made by Damon’s recent teeth extractions. From there, it found its way to the weakened knee and his elbow.” Then he repeated, “It’s certainly not typical, but that’s the problem with AIDS, it lets in any opportunistic infection that happens to be about.”
“AIDS? Damon is only HIV positive, doctor.”
The young pathologist looked at me slightly bemused; he was too tired to attempt an apology. “Damon has AIDS, Mr Courtenay,” he said simply; then he shrugged, “The operation to his teeth was unfortunate. It allowed a massive infection to enter his system. He’s very, very sick and has very little resistance.”
I held on to Benita’s arm. She was biting back her tears and I could feel her body trembling against mine. “You’ll have to excuse me,” the pathologist said, then added as though it were an afterthought, “You can be sure we’ll do everything we can to pull him through.” He looked down at his feet, avoiding Benita’s obvious distress, searching for something comforting to say to us. “At least we now know how to treat him, I think he’s going to make it now,” he said. He was young and a little gauche, he’d probably been working a double or triple shift, it wasn’t his fault and he couldn’t have known we didn’t know that Damon had acquired fullblown AIDS. Nevertheless, and quite unreasonably, because he’d done his best and it wasn’t good enough, I wanted to jump up and smash his teeth in. Somebody, somewhere had to take responsibility for what was happening to my boy! Hadn’t he had enough? Why this? More pain, more suffering, with – this time – no hope. Damon had full-blown AIDS. Damon was going to die!
I held Benita tightly as she began to sob and sob, taking in great gasps of air, as the very private person in her struggled to stop crying and kill the sound of her weeping and restore to privacy the distress which now overwhelmed her in this most public of all places, a lousy hospital corridor. It was the loneliest moment I’d faced since all those years ago, when I’d walked into the tiny room at the Children’s Hospital to see my baby wearing a huge purple head, larger than his entire body. A purple head which blew tiny bubbles, against a backdrop of painted pixies dancing around a polka-dotted mushroom, all of them wearing floppy red Father Christmas caps and green felt boots that curled up at the toes.
It was, I knew, the beginning of the end of the journey we’d begun together so many years ago, when I’d pulled back Damon’s blue baby blanket and witnessed his blood-soaked nappy on the terrible night of the day of his circumcision.
That evening a sign went up on the door of Damon’s hospital room. The broken black circle on a yellow background. Beside it was a notice:
INFECTED AREA
Gloves, mask and gowns must be worn at all times.
The word must had been pedantically underlined twice in red with a broad felt pen. In the corridor directly outside his room stood a two-sided sign, like a small sandwich board, propped up on its triangular base and positioned on the polished, grey vinyl floor so that it could be read by hospital personnel approaching from either direction. Its background was painted the same bright yellow as the sign on the door and on it appeared the broken black circle. In red lettering above the circle was printed:
DANGER
Infected Area
It was confirmed. Damon had full-blown AIDS. The machinery of his terrible infection was beginning to crank into life. Henceforth, Damon was a creature to be feared; untouchable, unclean, dangerous, somebody to be approached with great caution and only when wearing a face mask, gown and gloves. Henceforth, wherever he sat or lay, whatever he touched, became an infected area. Or so they were prepared to believe at the time when it was thought a sneeze or a cough might carry the deadly virus across a room, along the corridor and out into the innocent, unsuspecting world.
The ignorance about AIDS was monumental.
In some ways, it still is.
The nightmare had begun.
Twenty-one
From Italy with Love and Anxiety. The Mount Sinai Chicken Soup Affair and Eyes of Christ.
Celeste had called for the first time on the Thursday from Rome and Damon was of course still home. He made no mention of his bad knee and even though he was plainly in pain, talked to her in an animated way for nearly half an hour.
As there wasn’t a phone in the house at Vaucluse they’d agreed that Celeste would call the flat at Rose Bay every Thursday at 8 p.m. when Damon would be waiting. Her first call came after she’d been in Rome for nearly forty-eight hours and she was bubbling over with excitement, speaking excitedly to him about what she’d seen.
She gave him a blow-by-blow description of the Sistine Chapel which she’d seen that very afternoon, the Colosseum, the Pantheon and the Piazza della Rotunda, the dome of St Peter’s and a walk along the banks of the Tiber with the chestnut trees coming into l
eaf. Her artist’s eye and architectural training made the ancient buildings and their history truly come alive for him.
Damon hung on, sweat pouring from his brow and often biting back the pain, his face scrunched up. But when he spoke to her there wasn’t the slightest hint that he wasn’t terribly excited and loving every vicarious moment. There are times in your life when you look at your children and you’re happy that you got it right. With Damon we’ve been blessed with a great many such moments, but none made me more proud of him than this first phone call from Celeste.
By the time Celeste phoned again, this time from Florence, Damon had been in hospital almost a week. In retrospect, we should have told her everything, but we didn’t, merely saying that his knee and elbow, his good knee and good elbow, had blown up and that he needed special attention only the hospital could give him.
Celeste accepted this. Damon’s bad knee and elbow gave him constant problems but the other side of his body, referred to as his good side, bled reasonably seldom and, in a physical sense, was developed and not atrophied. He depended on his good knee and elbow enormously when the bad side went down and he was forced to walk on crutches. Maintaining the good side in good shape was always a priority with him and Celeste quickly understood that special care would be needed to attend to a really bad bleed in both. Besides, she was enormously excited and perhaps a little distracted at what she’d seen in this wonderful Tuscan city and her final statement to me was, “Tell Damon ‘the fingers of God’ are real!”
“Fingers of God?”
“Yes, it’s what we call those beams of light that come out of the clouds in Renaissance paintings. Tell him that I arrived here just after an afternoon storm and as the sun was setting the clouds were tipped with gold and ‘the fingers of God’ shot straight out of them and on to the Pitti Palace exactly like the paintings.” She giggled in her infectious way. “We always thought they were rather funny, sort of spotlights created by Renaissance painters to show the peasants where to look for the crucifixion scene.” There was a moment’s silence then she added in a soft voice, “Tell him I think of him every minute and I miss him terribly and I cried when I saw ‘the fingers of God’ and he wasn’t with me.”
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