Holding the Man
Page 23
Some years later I would hear a song called ‘Venus As A Boy’ and would cry as I was reminded of this moment, of the divine being incarnated as a boy.
I looked up to see John’s father in the doorway. He approached John without acknowledging my presence. ‘Hi, Bob,’ I said.
‘Hello.’ I have a name! He leant over John and called his name.
‘Bob, he’s asleep,’ I whispered.
John opened his eyes. ‘Dad.’
‘Hi, son.’
I watched Bob. I wonder what John would look like at that age? I reckon he’d still be good-looking. I reckon I could still love him even if he looked like Bob. I would adore seeing John grow old.
‘What have the doctors been saying?’
John struggled to talk. ‘They just want to keep trying to fix my lungs by –’ He coughed. ‘By putting antibiotics in between –’
‘I’m sorry, I can’t hear you.’
‘Haven’t you got your hearing aid?’ John strained to shout and ended up coughing.
‘I don’t like wearing it.’
‘Bob,’ I interrupted, ‘John can’t talk loudly, it makes him cough. I’ll translate for you, John.’ And so I did. It was hard work. I was hurt by Bob’s disregard for me but I figured it was because he thought I’d corrupted John, and probably infected him.
I woke up scratching at little red dots all over my forearms.
‘Would you guys like to have breakfast together?’ asked a nurse, Malcolm. ‘I can put your trolleys together.’
I pulled up my pyjama sleeves and showed Malcolm my forearms. ‘Make sure you show the doctors when they do their morning round,’ he told me.
Malcolm set up tables with breakfast trays, left the room and came back with a carnation in a glass. ‘You divine man,’ I said. ‘Where’d you get it?’
‘You don’t want to know. Enjoy.’ He went out again.
‘Probably from some dead guy’s flowers.’
‘Tim!’ scolded John.
When the doctors appeared, Tony asked me to take off my top and poked away at my skin. ‘It looks like an allergic reaction. This is tricky. You’re on a number of new drugs. I don’t want to take you off an essential one. I think we should stop the least important ones first. And we’ll give you some antihistamines.’
They didn’t touch the rash. By late afternoon I was maddeningly itchy. ‘Tim, stop scratching,’ a nurse said. ‘It’ll only make it worse.’
When I next spoke to Tony he was distressed at the lack of improvement. The microbiologist suggested a drug that blocks the itch receptor site. One of the nurses suggested soda baths. ‘As cold as you can stand it; it takes the heat out of the rash.’
Before bed, I poured a cold bath and braced myself as I lowered my torso under the water. Being cold was an unpleasant experience but so was the itch. Within minutes there was relief, but when my teeth started chattering I wimped out. I patted myself dry with a towel, walked back to the suite and kissed John goodnight. ‘Your lips are cold,’ John gasped.
‘I’m the Snow Queen.’ I climbed into bed and took a sleeper and the last Clindamycin for the day. Within minutes I felt a rush, prickling all over. I buzzed the nurse. ‘I’ve just had a rush from the Clindamycin.’
‘I was surprised the doctors didn’t take you off it, I would have thought it was the obvious one.’
‘So can I stop it?’
‘I don’t have the authority to tell you to, but if I were you I would.’
Next morning I told Tony that I’d taken myself off the drug. ‘I’m not happy about that, but it’s done now. We still need something to combat the toxo, so we have to desensitise you to Bactrim.’
This meant exposure to the drug in very small steps. ‘It’s every three hours, exactly three hours, not three hours and one minute, or the whole thing collapses.’ I was woken up through the night, to have the nurse squirting Bactrim into my mouth.
A couple of days later, I arose feeling very bright. My headaches were under control and the itching was a little improved. I’d stepped out of the forest of madness.
I spent the morning explaining my situation to John. ‘The drug may have left my body by now but the allergic reaction can continue for weeks. Isn’t that boring? Oh, yeah, one of the nurses told me this morning about this allergic reaction called Stevens-Johnston syndrome where all your skin falls off. Isn’t that gross? I’m so allergic these days that I’ll probably get it.’
John’s and my friends were running our errands, bringing in surprises and mail. I loved having them coming in, and got excited telling them all my news: the soda baths, the toxo, the allergy to Clindamycin. I was talking faster and faster. There was so much I wanted to report. ‘It’s fantastic being in here, being able to be with John but not having to worry about him or look after him. Penny Cook brought me a bag of coffee from Café Hernandez. It’s fabulous, best coffee I’ve ever had. Would you like one?’
I held court around John’s bed, entertaining friends. Their laughter only encouraged me more. Each new pair of ears would get the whole trip: coffee, toxo, allergy. Eventually Carole said, ‘Tim, stop talking, you’re giving me a headache.’
I was crushed and anxious. I wanted to talk.
Later that afternoon, I noticed that when I looked to one side of the television, it disappeared. I sat testing this phenomenon until I concluded my peripheral vision had shrunk. I buzzed and asked for Tony, who fetched an ophthalmoscope. ‘Pick a spot on the wall and keep focussed on it.’ This was not easy, as Tony’s head was in the way.
‘It’s amazing, the television is suddenly not there.’
‘Can you stop talking for a minute?’ Tony kept looking into my eyes. I could smell his aftershave. ‘There seems to be a large white spot on your retina but it doesn’t look like CMV. Shut your left eye and tell me when you can see my finger.’ He tested the size of the blind spot. It was fairly large and in both eyes.
‘I suspect it’s the lesion on your occipital lobe.’
‘Is this brain damage? Is it permanent?’
‘Maybe, maybe not. As your toxo improves we’ll know. And I’d like you to speak to a psychiatrist.’ I was appalled. ‘You’re a bit hypermanic. You seem very up, very chatty, talking at a hundred miles an hour.’
‘I’m not up. I just feel good. It’s the first time I can be with John and not have to look after him …’
‘Tim!’ Tony interrupted. ‘It’s important that we bring you down before you become grandiose, thinking you’re Jesus or spending all your money.’
I saw the psychiatrist. ‘I’d like to ask you some questions,’ she said. ‘How do you feel today?’
‘I feel really good.’
She scribbled away in her notebook. ‘Happy? Excited? How is being in hospital for you?’
‘Great, I’m really enjoying it. I’m having the best time.’
‘What sort of things have you been doing to occupy your time?’
‘I’m working on a play called Jimmy, an Angel, Stars and That about a gay relationship where one partner is dying.’
‘How’s it going?’
‘Good, I’m feeling very creative.’
‘Anything else?’
‘Just sitting around here with our friends, chewing the fat. Which has been great. So much to tell them.’
‘How do they think you are?’
‘Very bright, happy. John’s Ankali asked me to be quiet once because I was talking too much.’
‘Okay,’ she said making some final notes. ‘I’m going to put you on Haliperidol. You’re manic because the cells in your brain have become hypersensitive to certain neuro-transmitters. Haliperidol reduces that sensitivity. I’ll come and see you in a week.’
The first tablet arrived with lunch. I took it resentfully while the nurse watched. I slept the sleep of the dead, all afternoon and overnight.
Somewhere Warm
John had just been scoped again and was snoozing. I sat beside him playing with Topolino. When John w
oke and stretched I dragged my chair to the side of the bed and leant on it with my elbows. ‘I’m feeling a lot less speedy.’ I was seeking approval. ‘Hey, what’s this?’ I bounced Topolino towards him. ‘A charging rhino.’
‘Big dag.’
‘What’s this?’ Topolino clapped his hands. ‘Joy. And this?’ He clapped one hand. ‘Wanking.’ John grinned.
Sam stuck his head in the doorway. ‘Good news. Your scope was clear. There’s no ulcer and no inflammation. It’s probably fair to say that your cancer is in remission.’ Sam was looking pretty pleased with himself. ‘This new regimen seems to be getting good results. So now we’ve got to concentrate on fixing your lung.’ He left.
‘Wahoo!’ I yelped. John looked shocked, his eyes moist. I realised how scared he’d been.
Early that afternoon I’d fallen asleep in the chair next to John. I was woken when Bob arrived and bent over to kiss him.
‘Good news, Dad.’ Bob pulled his hearing-aid out of his pocket and screwed it into his ear. ‘Got some good news. The cancer has resolved.’
Bob smiled. ‘You worked hard for it, son.’
‘Here, Bob, have the seat.’ I sat on the bed.
Bob pulled out a white envelope. ‘I was reading your will this morning –’
‘Where’d you get it from?’ John demanded.
‘It was in the drawer of your desk.’ Bob had been staying in our flat while we were in hospital. John rolled his eyes at me. ‘I have some concerns,’ Bob went on. ‘Why is everything going to Tim?’
John was stunned. ‘I want to make sure he’s all right if I die.’
‘And Tim, is your will set out similarly?’ I said it was. ‘And if John doesn’t survive you?’
‘It goes to my family.’
‘So if John dies, you inherit his belongings. And then say a month later you die? Everything goes to your family? I don’t think that’s fair. I would like half. I put John through school and college and I think I deserve it.’ He pulled out a list. ‘Now, who owns the television and video?’ John sighed. It was his. Bob ticked his list. ‘And the stereo?’ His list was thorough, almost down to the Vegemite. I wondered if he was going to go back to the flat and stick little yellow dots on everything.
‘What about the car? You don’t want it, Tim, do you? With all the stuff going on in your brain and the eye stuff?’
‘They’re resolving, Bob.’ I sighed. ‘But I’m not going to fight you for it. You can have it.’
Bob trundled downstairs to get some lunch. ‘I wonder if he found our boy videos,’ I said and John hooted in embarrassment. ‘Who owns Hung Like a Horse? The whole thing’s a bit offensive.’
‘It’s just Dad.’
Tony came in. ‘Had some good news? Happy? Now, about your lung. We have a number of options. We can keep up the pleurodesis until it sticks.’
‘How many times can you do it?’
‘Pretty well forever, if you can stand the pain. Or we can do nothing, just wait for the inevitable and make you as comfortable as possible. Or we can operate, open you up and sew up the holes. You’ll end up with reduced lung capacity and there is a chance you won’t survive.’ John looked worried. ‘I’ll get the anaesthetist to assess you. They don’t like operating on people with underlying chronic illnesses.’
The anaesthetist was a scrawny man with glasses and hair full of Brylcreem. Tony stood by as he listened to John’s chest, tapping around, checking liver and spleen.
‘You sound okay, a few crackles in the bottom left lobe, but when you have an underlying chronic illness there is a risk of failure. I’d rate yours at about 25 percent.’
‘Failure?’
‘Death.’ Oh, is that all? ‘Take some time to think about it.’ He and Tony left the room.
‘I don’t want to do nothing.’ John coughed. ‘That’s giving up, and I don’t know how many more pleurodeses I can stand. What do you think?’ I told him I would support whatever he chose. ‘I think I’m going to have the operation.’
‘Okay. You are such a brave boy.’
John had a visit from a good-looking man with curly black hair. I noticed the eyes, those eyelashes: cousin Tim. ‘I’m boyfriend Tim,’ I told him. John and he had come out to each other at a family dinner a year ago. When John got home from the dinner he was thrilled. At last he wasn’t the only poofter in his family.
Tim didn’t know till now that we had AIDS. His mother had swallowed Lois’s story that John had cancer.
A nurse came in and handed John the portable phone. ‘John, it’s your mother.’
John looked at us, as though bracing himself, and then said as sweetly as possible, ‘Hi Mum … Not too bad. They’re going to operate tomorrow … To sew up the holes in my lungs … A little scared … Tim Cookson’s here. Mum, he says you told his family that I have cancer … But it’s AIDS-related cancer … I’m not ashamed of what I have. I want you to tell people the truth. Please try for me.’
Whatever Lois said next took John aback.
‘That’s a shame.’ He nodded, his breathing getting shallower. ‘It’s a shame. Yes, it is.’ He chewed his lips. ‘Okay, goodbye.’ He slumped forward. ‘She reckons that if I insist on her telling people, she doesn’t know if she can be my mother.’
‘She doesn’t mean it.’
‘I know, but it hurts.’
The next morning Tony came back in. ‘The theatre list is full today, but if there’s a cancellation or if they finish early they’ll try to squeeze you in.’
Mark, a college friend of John’s, arrived with two paintings from his daughters, the kind of abstract paintings that four-year-olds do with a message in texta pen: ‘Get well, John. Love, Sophie.’ He stuck them up on the wall in front of John’s bed.
Later that day a nurse arrived with a pre-med. John turned over and pulled back his hospital gown, revealing what was left of his bottom. His bum looks like two skin flaps. A rush of revulsion went up my spine. I was shocked.
Before I knew it, the transport guys appeared at the door. They brought in a trolley, undid the suction and helped John on board. He was very weak. As they wheeled him out he gave a small wave. Then he was whisked away from me. A moment later James Bean arrived. ‘I just saw John. He’s going to have an operation.’
‘They’re going to sew up his lungs.’
‘He held my hand and said he was scared.’
James and Mark sat sharing memories of John. ‘I can’t believe how hard he’s fighting. When I came in the other day he was lying in bed with strap-on weights doing leg-lifts.’
John’s brother Michael appeared. We told him what was happening. The four of us knew that at any moment John could die. I couldn’t think of anything to say to Michael. We’d never been close. I tried to read a copy of Outrage but it all floated past me. All I could think about was Tony coming in to tell us they had lost John.
After an hour of nervous silence, the door swung open and an inanimate John was wheeled in and loaded back into bed. As he slowly came around I said, ‘Welcome home, my John.’ But in my sick fantasies I had been saying, ‘Walk towards the light.’
The scar was huge and angry-red, from his solar plexus to the back of his ribs. I wish I could have seen the operation. I would love to know what my boyfriend looked like inside, a privilege that most couples don’t get. Slugs and snails and puppy-dogs’ tails.
Malcolm was inserting a naso-gastric tube through John’s nose and throat down into his stomach. Every now and then John would gag. ‘Take a deep breath.’ John started to dry-retch. ‘Are you okay to go on?’ John nodded. ‘Nearly there.’ John had lost so much weight he was put on a 24-hour drip-feed, about 3000 calories a day.
Once John was ambulatory we talked about the future. ‘I want to go somewhere warm, Noosa maybe.’
‘It may be a bit early for that,’ said Tony. ‘Why don’t you think about going to the hospice?’
‘I thought that was for people who are dying?’
‘Not solely. People re
cuperate there. They even offer respite care for family members who need a break. It’s a nice place, the food’s quite a bit better than here, and the staff are pretty friendly.’ I wonder what it’ll be like being around a lot of dying people?
‘Can we be together?’ I asked.
‘If there’s room available.’
A couple of days later John, unplugged from the drip machine, the tube hanging over his ear like a piece of punk jewellery, wandered into the six-bed ward where I had been moved. He was grinning broadly. ‘Good news. We’ve got into the hospice and the best bit is we have a double room to ourselves.’
‘Fantastic! Anything would be better than staying here. There’re some really creepy guys in here.’ I lowered my voice. ‘See that guy over there? His body is bizarre, huge pendulous breasts, and he doesn’t have teeth so he sounds like someone with cerebral palsy. The only thing he says is, Fuck off, poofter – to every nurse, male or female.’
A nurse gave me blue and white plastic bags with the words ‘Patient’s personal belongings’ blazoned across them. As I packed I was shocked at how much stuff I’d accumulated over four weeks, but when I saw John’s pile I was flabbergasted. I wondered if there was anything left in the flat.
At the hospice John was pushed up the hill in a wheelchair by the nursing unit manager, with the bags stacked on top of him. He looked like a bad Mardi Gras float. We entered the foyer of the hospice and it struck me how much like a hotel it was – spacious, with a large flower arrangement on the desk.
We were shown into a largish room painted a relaxing blue, with vinyl floors and our own bathroom. Everything had the sweet smell of disinfectant. There were two beds. ‘We can push them together.’
‘Sorry,’ a nurse said. ‘We need to be able to get around the bed.’ She smiled apologetically. I guess I need to tell you that we don’t do any medical interventions. You have to go across the road to have those. And we don’t resuscitate. Enjoy your stay.’
I wandered to the window and realised that we could see the Wall, where boy sex-workers worked under the monster figs. It struck me as symbolic: if those boys were not practising safe sex they could end up in here. The TV room looked down onto Oxford Street. ‘It’s like living in a city apartment. I’d love to live somewhere like this, to step out into café land and gay-boy city.’