‘They’re fairly powerful drugs.’
‘And they stay in your body for a month?’
‘They’re big guns. If you have any reaction like tingling on your lips and tongue or difficulty breathing, you must tell me.’
She loaded up each syringe and pushed it through slowly.
‘Why so slow?’ I asked.
‘It can irritate the vein or damage it.’
‘Is he going to lose his hair?’
‘Tim, do you have to know everything!’ John protested.
Julie answered my question. ‘Not everyone does, but two of these can cause hair loss, so it’s pretty likely.’ I’m not going to enjoy that, my beautiful boy without his thick black hair. I was suddenly confronted by how much I valued his looks. It amazed me that after all these years I still found him attractive.
Julie was finished. ‘I’ll come back in half an hour to make sure you’re okay.’
I sat holding his hand. ‘How are you feeling?’
‘Fine. No wuckers.’
His dinner arrived at five o’clock. He took the lid off a plate of dried chook and boiled vegetables. ‘Kindy dinner. How do they expect anyone to get well eating this shit?’
I kissed him goodbye. ‘See you in the morning about nine.’
Next morning I walked into the ward. John’s bag was there but the bed was empty. I found out he was in Casualty. ‘Is he all right?’
‘Can I ask who you are?’
‘I’m his lover.’
‘He’s having an X-ray. They think he may have popped a lung.’ Jesus, just what you want.
I stood at the prison window. ‘My lover John Caleo is in there having an X-ray.’ Hurry, my boyfriend needs me. Eventually they let me in. I found him sitting in a wheelchair with an oxygen mask on. ‘You look like a parrot,’ I told him.
‘Carpe Beakum,’ John joked, quoting a Fast Forward sketch about the Dead Parrots Society. We laughed and then John grimaced. ‘I woke up this morning with a really bad pain down one side.’ He coughed and took some time to recover.
Tony, the registrar from the ward, appeared. ‘We’ve seen the X-ray and you have a pneumothorax, a popped lung. We’re going to put a pleural drain into your chest.’
They wheeled him into a cubicle and Tony scrubbed up. He asked John to open his pyjama shirt, sterilised his chest, referred to the X-ray, counted ribs and decided where to go in. ‘A little local first,’ he said, then punctured John with a needle. He then held up a metal tube cut at one end at an angle, so that it looked like a spearhead. The other end was attached to a piece of hose connected to a bottle with water in it.
‘I hope this won’t hurt too much.’ He placed the spear against John’s chest and with some exertion pushed it in.
There was a hiss as air escaped into the bottle. ‘That’s bubbling well. We’ll do another chest X-ray.’ Tony explained that pneumothoraces normally heal well, but less so in people with HIV. I asked if he thought the chemo might have caused this.
‘No. It’s more likely to be a burst PCP cyst. We may have to do a chemical pleurodesis, where we pour irritants in between the lung and the chest wall, hoping that they will scar together. When the bubbling stops we know it’s healed.’ He clamped off the tube and John was wheeled up to the ward, where the tube was attached to a suction port on the wall.
At the end of a week Tony came in. ‘I’d like to get you back on your feet as soon as possible. It hasn’t healed. We are going to have to do a pleurodesis, probably this afternoon.’
‘Okay, honey.’ In came a large nurse built like a ship. ‘Got you some fun drugs. This is Midazolam. It’s a sedative, but it also blocks the memory so you won’t remember what happened. Do you want it in your bum?’
John rolled over onto the side without the tube. He must be craving a chance to roll over on the other side. I sat watching him becoming sedate. He took a deep breath, blew through his cheeks. ‘Petty strong stuff,’ he slurred.
Tony returned. ‘This is going to hurt. If you find it too hard, tell us and we’ll try to alleviate the pain. We’re going to start now.’
John sucked air through his teeth. He was trying so hard to be brave but he started to groan loudly. They wheeled a gas tank over to him and placed the mask over his face.
‘Breathe deeply.’ John’s breathing became relaxed and Tony continued pouring in the Tetracycline. ‘It’s good, the bubbling is reducing. Keep breathing the gas.’
‘It’s stopped,’ said a nurse.
‘We’ll let you stay like this for a while, to give it a good chance of sticking. We’ll come back in a couple of hours and unplug the suction.’
When they did the bottle remained still. There was jubilance among the staff.
Later that night, John and I were watching Home and Away. Out of the corner of my eye I saw something move in the bottle but when I looked closely I couldn’t see anything. A couple of minutes later, there was more movement. Don’t alarm John. It’ll heal. But then it started bubbling in earnest.
John would have to go through it again. That too failed. By the third attempt I was finding things distressing, standing by while they hurt my lover, worrying whether this one would take. This time I held his hand. With us was Carole, John’s Ankali (a volunteer carer in the program set up by the Albion Street clinic). She was a mother with a cuddly body and a gentle, spiritual manner.
John was breathing through gritted teeth and groaning now and then. I started to feel very sad. ‘I’m hating this. It’s like we’re standing by watching him die.’
‘Tim!’ John chastised me through the mask. ‘You’re talking about me dying.’ I was embarrassed, and I resented being ticked off.
Later that night the bottle started bubbling again. ‘This is fucked. It’s so unfair. Would you mind if I don’t come to the next one? I find it distressing to see you in so much pain.’
‘I want you to be there, to hold my hand.’
‘It’s giving me headaches.’
On the fourth attempt the lung stuck. They took the tube out of his chest wall and John was able to go home, very much weakened after not using his muscles for so long – he had spent nearly a month attached to the wall. He struggled up the stairs, stopping on the landing to get his breath. He braced himself and took on the challenge of the next flight. Once inside he started to cough, his body racked with rasping and wheezing.
‘It’s nice to have you home, my brave Boony.’
John enjoyed his freedom. He had a major shopping attack, buying a swanky can-opener, a toaster, a CD of Vince Jones and a new jumper. He’d spend his days reading the paper, watching videos and snoozing. Sometimes we’d go for a walk down by the harbour, where the winter sun sparkled on the water. John tried to keep a good pace in order to build his strength but every now and then he’d start coughing. He looked so cuddly rugged up in his woollen overcoat and his Bombers scarf.
He was re-establishing himself in normal life. And I could go to work without having to visit him two to three times a day in hospital. However his cough was a real bark. He would be at it through the night. I’d drift off to sleep only to be woken by him coughing. In the mornings I’d feel like I’d been through a mangle and my head would be thumping.
‘I might sleep in the living-room tonight,’ I said one morning.
‘Please don’t.’
‘I’m going to break down if I don’t get some sleep. I’ll come to bed with you and we can cuddle, but when you fall asleep I’ll go out to the living-room. Okay?’ He agreed, resentfully.
I was at work when the phone went. It was John. ‘You won’t believe this. My lung’s popped again.’ He was crying and coughing. Carole had taken him to Casualty. ‘They’re going to put another drain in. Can you come?’
I hung up the phone and strode up the hill to the hospital so fast my legs were burning. This is fucked. Why is he being punished like this? It’s going to be another month of visiting him in my breaks, washing his pyjamas and running his errands. I arr
ived at Casualty feeling tired, weighed down by what was happening.
Carole was there holding his hand. I kissed him and rubbed my hands through his hair and it came away in clumps. I secretly showed Carole, who raised her eyebrows. I chose not to say anything to John.
Next morning they had put him in a room of his own with a view over the eastern suburbs. He was sitting up in bed and smiled when he saw me. There was hair from arsehole to breakfast – hair on the pillow, on his shoulders, even caught in his eyelashes – and yet his head still looked normal.
By the next day he started to look mangy. ‘Maybe we should pull it out?’ I suggested.
‘No, I don’t want to.’
My headaches were still there. I was now getting a visual aura like the ones I used to have when I had migraines. At John’s suggestion I booked in to see the Outpatients registrar.
‘Your gait looks normal to me. And you seem fairly lucid. Are there any changes in your handwriting?’
‘Don’t think so. Should I have a brain scan?’
‘You can if you want, but I don’t think we’re going to find anything. You don’t look like someone with toxoplasmosis or a brain tumour. The headaches are probably due to the stress of having John in hospital. If they’re still there in a week, come back and we’ll talk about a scan.’
I went to Craig for an adjustment, which gave only partial relief. Then I tried massage from a warm cuddly bear of a man who ran a volunteer service for people with AIDS. He worked my neck and shoulders strongly and brought some relief.
I told him about John. ‘No wonder you’re getting headaches. Maybe you should think about relaxation or meditation.’
‘I’m too tense to relax.’
One afternoon during an evaluation workshop, finding it impossible to concentrate, all I could think about was that John was in pain, he was very sick and going to die. I had an ache behind my eyes that meant there was a dam of tears waiting to burst. At the break I approached the staff counsellor, whom I had been seeing for some time. She was booked up all that day.
‘I’m feeling suicidal.’
‘Come and see me at five.’ I felt so much better.
‘Do you talk about this with your friends?’
‘I don’t want people avoiding me because all I talk about is John, AIDS and death.’
‘Do you talk about it with John?’
I shook my head. ‘If this was any other crisis he’d be the first person I’d turn to. But he is the problem and I can’t make him feel like that.’
‘What do you think life will be like without John?’ I was taken aback. I’d never thought about it.
‘I would feel like I’d lost one side of my body.’ My voice started to rise. ‘I don’t want this to happen. I love him.’ I was crying freely, venting all the anguish and fear.
When I got back to the hospital John was in the middle of yet another pleurodesis. I had a plastic bag with his pyjamas in it, nicely washed but flecked with tissue. ‘I’m sorry, but they went through the wash with a Kleenex.’
‘Didn’t you check? Can’t you get anything right?’
‘Please don’t talk to me like that. I’m really stressed. You’re not the only one having a hard time here.’
‘I’m sorry. You’re right.’
I rubbed his arm. ‘We’re both pretty stressed at the moment. I’ve got you some apricot delight. Hows about we clip your hair? It really looks ratty.’ I got some clippers from the nurses’ station, got someone to take his tube off the suction, and wheeled him into the bathroom. I was feeling solemn. This was a symbol, a circumcision rite. I started the clippers and put them to the base of his neck. The hair fell away and his skull was transformed into a large peach with soft fuzz on it.
‘Beautiful. It makes your eyes stand out even more. You look like Sinead O’Connor.’
As each pleurodesis failed, my back seized up even more. John was sent down to Casualty to have another X-ray and they decided to try again while we were down there. They were about to start when a woman commanded, ‘Move.’ I turned to see nurses and doctors wheeling in a trolley with a girl who was blue all over. ‘Get out of here please. Crash trolley!’
We were moved into another cubicle. ‘Probably an OD,’ Carole said.
‘I hate the fact that John is fighting so hard to stay alive and people like her are trying to leave the planet.’
Chapter TEN
Drifting
I had at last been booked in for a scan. I sat on a blue plastic chair and pulled out my knitting. I had almost finished a beanie for John, to cover his head in the cold weather. It was to be a surprise for him.
The nurse called me in and asked me to take off my earring and lie on the table. At one end was a large tunnel. She strapped my head down with a large band and urged me to stay still. The table started to move through the tunnel, where something whizzed around me.
Then a doctor came in and introduced himself. ‘We’re going to give you some contrast fluid, to enhance the tomography of the brain. Some people have an allergic reaction to it, so if you notice tingling in your lips or tongue, let us know. You may also get a rush.’ He put a needle into my vein, an extremely uncomfortable procedure, attached a large syringe full of orange fluid, and pushed.
Suddenly I was falling. A wave of panic washed over me, but as I breathed deeply the feeling went.
The doctor went behind a screen with an operator, who stuck her head around the corner and ordered me to stay still as my body moved slowly back into the tunnel. The staff were quiet after the scan, pointing at their screens. I was hoping someone would come and tell me that everything looked good, but no one did. They kept talking and pointing at the screens.
I was back sitting in John’s room when the Outpatients registrar called me out. I followed her to the doctors’ station and was shown some scans on the lightbox. I didn’t know how to read them till the registrar took me through them. I had five lesions of toxoplasmosis in my brain. She pointed to some dark shapes in my head. ‘They’re colonies of a parasite that is transmitted by cat poo.’
‘What are you saying? I ate some cat poo?’
‘Probably playing in a sandpit as a kid. Because you’re allergic to sulphur drugs we have to give you an alternative, Clindamycin. I’d like you to start straight away. Two tablets four times a day.’ She gave me a prescription.
‘Am I going to have brain damage from this?’
‘Not likely. The lesions don’t eat the brain, but they put pressure on it, which is why you get the manifestations.’
I went to the chemist and then struggled home, feeling nauseous. I wheeled the television into the bedroom. Topolino, the Mickey Mouse doll John had bought for me in San Francisco, sat smiling with startled eyes. Who does he remind me of? John. I crawled into bed and played with Topolino, making him do the things that John does, like John’s famous impersonation of a charging rhino.
I got worse, as though I’d been given permission to collapse under the weight of the headaches. My head thumped, expanding and contracting like a balloon with every heartbeat.
Within the world of sleep I was able to find relief from the burden of pain. I woke some hours later, straining to read the clock: 20.40. I don’t know what that means. Twenty to nine? In the morning? Don’t know. Got to take tablets.
This drifting continued for a couple of days. I rang John to say I felt too bad to come in. By the third day I was quite disoriented. I rang the hospital and spoke to the consultant microbiologist. I told her I was having trouble knowing which drugs to take, even what day it was. She asked me to come in.
I rang my Ankali, Geoff, at work. While I was waiting for him I packed some things, no easy feat. I kept going over and over what I was taking. Socks, Topolino, an apple, and the Clindamycin.
I sat in Casualty, my headache blurring my vision. Geoff sat beside me and I was able to let go, knowing that I was in good hands.
Then someone came to say they had a bed upstairs. It was the single
room next to John’s and there was a door between them.
‘Hi John,’ I waved.
The next few days I drifted in suspended animation, waking in distress calling, ‘The curtains are on fire.’ Sitting up and saying to a visiting friend, ‘I really like you but I wish you’d stop having affairs.’ Waking up and seeing my mother standing next to a friend from my NIDA class. ‘You two look like you could be sisters.’
A few days later, I slowly swam out of the fog to see a tall blond nurse doing my temperature and blood pressure. ‘We thought you were dying. You and John being in here together has given us all a big fright.’
I sat reading the Star Observer when Dominic, one of the Fun and Esteem boys, put his head round the door.
He had come to the project as a straight boy who was a sex-worker, and had thrown himself into a workshop with gusto, revealing his childhood sexual abuse, his drug use and the fact that he was HIV-positive. The group had been discussing whether people should disclose their status.
‘Why? If you’re having safe sex, it’s irrelevant.’
‘Do you believe safe sex works?’
‘I wouldn’t sleep with someone if they were positive. And I reckon I should have the right to know.’
‘You may miss out on a major spunk.’
Suddenly Dominic spoke. ‘You guys don’t know what it’s like.’ He was crying. ‘It’s so hard. I’ve probably infected people and I don’t feel good about it. I’ve come close to topping myself.’ At the end of the workshop when thanked for his honesty he looked ready to cry again.
At the hospital he smiled, holding up a large bag of Darrell Lea chocolates. ‘You helped me so much. I’m very sad that you’re sick.’
‘I’m okay, this one’s not going to get me.’
John had had some painkillers and was drifting on an opiate cloud. I sat watching him, thinking about all that was happening to us. I don’t want him to die. I’m scared that it’ll be the last time I see him. I don’t know if I believe in an afterlife. What if John’s soul is just reabsorbed into the greater power of the universe? I don’t want him to become blended energy. I want him to be there waiting for me. I want us to be distinct entities. He looks so peaceful, like an angel asleep. Innocent. Serene. Calm. No pain. No fear.