Then cruel hope returned.
Reports of a new generation of drugs had been circulating in the medical press since the turn of the year. All the articles Mike read stressed they were only at a developmental stage and would not be ready for months or even years so the letter he got in the middle of March threw him into a panic. Having struggled to accept that he would die, he found it almost impossible to adjust to the thought that he now might live.
The scheme was a double-blind randomized placebo-controlled study of 1,200 patients with advanced AIDS – not even the doctors would know who got the new antiretrovirals and who got the sugar pills – and the letter stressed that all who signed up for it would have to accept these conditions. Mike looked through the terms of the proposal, carefully set out in cautious legalese with clauses and sub-clauses neatly arrayed, and put it away in his desk. For the next week he was restless, disturbed that he found certainty easier to deal with than hope.
The following Monday he went for a full-day appointment at the hospital. When he came back, he threw open his shirt with a triumphant ‘Ta-rah!’ and displayed the shunt that had been inserted in his chest – a thin white plastic catheter emerging from his breast above the nipple with three transparent couplings attached to it. The sight of the thing stitched into Mike’s flesh made Pete feel queasy, but Mike was jubilant.
‘I signed up, Pete! I didn’t tell you I was going to. They’ve asked me to test out this new treatment. Maybe you won’t be getting rid of me quite as soon as you thought!’
Mike launched into an explanation of how the new drugs would provide a cocktail of protease and reverse transcriptase inhibitors known as highly active antiretroviral therapy, or HAART, that would reduce the viral load in the body and help normalize his red and white cell counts. He had spent so much time researching the advances in AIDS treatments that he knew almost as much as the doctors did, and he seemed convinced the new drugs were lifesavers.
Pete listened to his explanations, asked a few questions and said what marvellous news it was that he had been selected for the trial. ‘But Mike,’ he said, ‘it’s only going to work if you get the real drugs and not the placebos. Don’t you think just taking pot luck is too much of a lottery when it’s a matter of life and death?’
Mike looked at him blankly.
‘What’s the alternative? I signed the form agreeing to the conditions of the thing. And anyway, even the doctors don’t know which is which.’
TWENTY-TWO
1995
In March Mike phoned Mary to invite her to the house in Shepherds -town for Easter. He had been on the new drug therapy for a couple of weeks, and even though his physical condition was not improving, the thought that something was being done gave him a psychological boost, which in turn lent him the strength to talk.
As soon as Mary heard his voice she knew something was wrong. Mike sounded excited and nervous, repeating that she must come see him, already making arrangements for her trip, reading out flight times, insisting that he would pay the airfare.
Mary had something to tell him too: she had recently split up with Nathan’s father, but now she had a new man in her life. She was very much in love with George and wanted him to meet her brother.
‘Sure, you should bring him along,’ Mike said. ‘The more the merrier. I’m so happy for you.’
Easter fell in the middle of April. On the Thursday before, Mary and George flew from Tampa to Washington National and Pete came to the airport. Mary had hoped Mike might be there too, but Pete said he couldn’t make it. On the drive out to West Virginia Mary sat up front, chatted about life and probed gently, but Pete’s answer to all her questions was, ‘You’ll need to ask Mike.’
He came to the front porch to greet them. When she saw him, she bit her lip. He was thin and stooped; his old bowling jacket hung loose on his emaciated frame. Mary wanted to cry. She composed herself and gave him a hug.
‘It’s good to see you, Bro. Are you OK?’
Mike struggled to smile and Mary saw tears in his eyes. He fought them back and extended a hand to George.
‘Come on in, guys. You’ll be needing a coffee and I’ve got some raspberry jam for you to try – won me first prize at the Shepherdstown fair. Of course, it was only me and Mrs Van Rooen who entered . . .’
Mike fussed over his visitors and listened to Mary’s stories about Nathan and about Doc who had a new lady friend he was thinking of moving in with. But Mary was his focus – he kept looking at her and smiling, and when he brought in the drinks he sat down beside her and ran his fingers through her hair.
‘You know, Sis,’ he said, ‘when we were kids I never thought I’d grow up to have a sister with so many beautiful blonde curls!’
Mary laughed, for the first time since they arrived.
‘That’s the wonder of peroxide, Mikey! Gets rid of grey hair in a trice. Looks like yours has stayed black and beautiful, though.’
Mike put his hand up to his head and ran it over his cropped scalp as if he were scared of discovering something unexpected and dreadful, then suddenly broke into a dazzling smile.
‘Listen, guys,’ he announced. ‘I want to say something. Don’t mind me, George; it’s just I haven’t seen this one in quite a while. I want to say how pleased I am, how happy it makes me . . . to have you here.’ He swallowed. ‘I’ve been thinking a lot about when we were kids growing up together, you and me, and I want you to know how much joy those memories hold. I want you to know how much I owe you for all those years and how much I appreciate you being there for me. You’ll think I’m being sappy – maybe I am – but what I want to say is . . . how much I love you, Sis.’
Mike looked at the ceiling; Mary pulled out her handkerchief and ran out to the porch.
A minute later he went out to join her. ‘Hey, Sis, I didn’t want to make you cry . . .’
Mary looked at him, half smiling through her tears. Behind the mask of the invalid, behind the sunken eyes and sallow cheeks, she could see the Mike from long ago now – the caring child who had been buried under life’s hard rind. Life might have made him harsh – bitter perhaps – but underneath was the same, wondering little boy.
‘Oh, Mikey.’ She sniffed. ‘It’s so beautiful what you said; it just made me so happy . . . and . . . and so sad.’
Mike took her arm. They leaned on the rail of the porch together, looking out over the peaceful green fields.
‘You know, things have been tough,’ Mike said. ‘I’ve been kinda sick . . . In fact I’ve been real sick, Mary. It’s AIDS.’
Mary began to weep. ‘Oh Mikey, I knew it. I just knew things weren’t right. I could tell right off. Mikey, poor, poor Mikey . . .’
But Mike gripped her arm and shook his head.
‘No, wait, Sis. That’s not the end of it. There’s good news; that’s what I got you here to tell you. They’ve come up with these new drugs and I’ve been chosen to try them, so there’s hope . . . And, you know, I just have a feeling that I’m going to make it – you know how you get those feelings? And how usually they’re never wrong?’
Mary squeezed his hand and forced herself to smile, but she couldn’t say a word.
Over the next few days she saw how much Mike had changed; saw how much he had slowed down. He shuffled now where he used to bound about, and kept having to sit to catch his breath. He no longer ran the kitchen with his old dictatorial zeal – Pete had taken over cooking duties – and he spent a lot of time on the couch snuggled up with his dogs, Cashel and Finn McCool.
But for all his pain Mike stayed upbeat: he showed Mary the port stitched into his chest and gave her a tour of his medication, kept in a medical cooler in the hall. They sat on the porch, like they had when they were kids in Rockford, and talked. They laughed at old memories and wondered what their classmates from Boylan might think about little Mikey Hess and his rise to power and influence in the White House. Mary said how proud she was of her brother, and for a moment the cloud that hung over them seemed to
disperse, but not for long.
‘Mikey,’ Mary asked, ‘did you tell anyone – I mean, like Doc or the boys – that you’ve been sick?’
Mike shook his head.
‘So I guess you don’t want me to say anything, right? And Mikey, did you ever tell any of them that you’re gay?’
Mike shrugged. ‘You know, I don’t see the point. None of them could care a dime about that . . . or about me. Maybe I’ll call James and talk to him some day – he’s the one who might listen.’
The conversation turned again and again to Ireland, and Mike told Mary about his last trip. ‘It’s the greatest regret I’ll have,’ he said, ‘not finding my mom. I guess she could be dead or she’s gone off and found a new life, but something tells me no; something tells me she’s alive and hasn’t forgotten me. You know, Mary, you should go find your mom while you still can: it’s the one thing that can make all the difference to your life.’
Having come all the way to Washington, Mary and George wanted to make the most of their trip so rented a car and went off touring for a couple of weeks. When they came back to Shepherdstown on their way down to Florida, Mary thought Mike was worse.
Pete agreed. ‘I don’t think the drugs are working,’ he said. ‘I think he’s been unlucky and they put him on the placebo instead of the real thing. But when I try and tell him to pull strings and get himself on the real medication, he just says he doesn’t want to argue with the doctors. And the saddest thing is he thinks he’s getting better.’
In the weeks after Mary’s visit Mike was visited by all the plagues he had so remarkably avoided for the first twelve months. He had constant headaches now, dizziness and nausea. His fingernails were so black it looked like he was wearing polish; the muscles in his arms and in his legs had wasted to airy thinness; he had recurring liver problems and his hair was beginning to fall out. Pete felt Mike was disappearing in front of his eyes: one day he would simply melt into nothingness.
At first Mike had struggled never to miss a day of work: the obsessive thought that the party would discover he had AIDS and he would lose his job never left him, and he frequently went to the office when he should have been home in bed. By early summer he had given up the pretence. He had to spend more and more time in hospital – three days here, four days there – during which he would gather enough strength to be discharged, then begin the next slow decline that would bring him back through the same doors to the same ward and oftentimes the same bed.
His fear of what his colleagues would think of his increasing absences proved unfounded. Far from firing him, the RNC sent messages of support and encouragement. There were other gay men in the committee, like Finance Director Jay Banning and Mark Clacton in the redistricting team, who were especially helpful in taking over Mike’s workload, but straight co-workers too – men and women – were quick to send him their sympathy. They couldn’t fail to know he had AIDS, but they never wavered in their support. As he lay in GW Hospital with drips in his arms and machines monitoring his organs, Mike marvelled at the humanity of the individuals who made up the Republican leadership – and at the inhumanity of the policies that emerged from it. These were good people, yet few if any of them spoke out against the politics that shamed the name of their party.
By July Mike was spending more time off work than in his office. He was scheduled to attend a three-day planning meeting in Philadelphia for the following year’s convention, but the morning he was due to travel felt tired and nauseous. Pete told him to stay home, but Mike insisted on going. He might not live to see the convention, but he was determined to make a contribution to it – it would be like extending his life.
Mike’s wasted body wasn’t up to it. On the first morning he collapsed in the meeting room and was taken in a limo to catch the train home. At Union Station in Washington he staggered from the carriage, his body bent under the weight of his bag, and waved to Pete. As he watched Pete’s face crumple, he fought back a tear. When Pete drove him to GW Hospital, he felt in his heart that they were making the trip for the last time. But hooked up to the drips he seemed to rally, and after twenty-four hours he was able to sit up and talk to the nurses. He thought the guy in the next bed looked familiar. They exchanged glances and Mike saw a similar glint of recognition in the other man’s eyes.
‘Hi,’ Mike managed. ‘We’ve met somewhere before, right? Michael Hess.’
‘Oh my God, Michael Hess! We met at the party in Old Town Alexandria. It’s me, Rudy Kellerman. I wouldn’t have recognized you in a million years, you look so bad!’
Mike summoned up a picture of the small, chubby guy with an overbite who had harangued him about the administration’s AIDS policies the night he was appointed deputy counsel.
‘Well, you’re not looking too great yourself,’ Mike countered. ‘The only positive thing I can say is you’ve slimmed down pretty good since I last saw you.’
‘I sure have,’ Rudy said mirthlessly. ‘It’s a programme called slimming to death and it looks like we’re both on it.’
Silence descended as each man stirred memories of mutual resentment that refused to recede, even in the awfulness of their shared situation.
‘Wanna read this magazine?’ Rudy said eventually. ‘Got a pretty good article in it about one of your guys – Arthur Finkelstein. You know him?’
Mike said of course he did; Finkelstein was one of the Republicans’ leading strategists, working with senators on the conservative right like Jesse Helms and Don Nickles.
‘Well, it seems the guy’s gay!’ Rudy announced. ‘Been living with his lover and two adopted kids up in a mansion in Massachusetts for the past twenty years – all the time he’s been churning out that homophobic bile you guys use to bash the queers!’
Mike scanned the copy of Boston Magazine. The article was a crude exercise in outing, listing the voting record of the senators Finkelstein had advised. All had opposed Clinton’s anti gay-discrimination bill; all had voted against equal marriage rights for homosexuals; all had supported the Helms amendment on federal employees.
‘So tell me, Michael,’ Rudy was saying. ‘How can a guy like Finkelstein sleep at night? Does he hate himself so much for being gay that he takes out his self-loathing on the rest of us? Did he join the Republicans because that gives him the platform he needs to flagellate the homo he despises in himself?’
Mike shifted in bed.
‘Look,’ he said. ‘I don’t know what Finkelstein thinks. And I can’t speak for the party.’
‘But you can speak for yourself, can’t you?’ Rudy snorted. ‘Or were you just following orders like those Nazis at Nuremberg? It’s your fault we’re here dying, Michael; it’s you who’ve condemned us to death, along with millions of others, because your party dismissed AIDS as a righteous punishment on the gays. How does it make you feel to know the drugs that could cure us are just around the corner – maybe just months away – but they’ll be months too late for us because the goddam Republicans wouldn’t start spending on a cure until it was too late!’
The argument went back and forth. Mike found the conversation enervating and distasteful. He hated Rudy’s hectoring tone; there was no escape from his accusations and his glare. When Pete came to take him home Mike breathed a sigh of relief. He sat and stared straight ahead as the DC suburbs merged into the lush green woodlands on the far side of the Potomac.
‘Pete?’ he said. ‘I think we need to go see the lawyers. Are you OK to come with me?’
TWENTY-THREE
1995
Doris White had been Mike and Pete’s attorney for years. She liked ‘the boys’, as she called them, and she was shocked by the change she saw in Mike.
‘Why, Michael!’ she said, hurrying to bring him a chair and watching in horror as he lowered his emaciated body into it. ‘Are you all right, dear? What can I get you? Coffee? Something to eat? You surely look like you could use it.’
Mike smiled.
‘Thank you for being kind, but I don’t think co
ffee’s going to help me now. I’ve come to ask if you’ll help me draw up my will.’
Doris went to fetch some files from a cabinet, came back to her desk and looked Mike in the eye.
‘I surely will help you, Michael; it’s not a difficult thing.’ She hesitated. ‘But first I want to . . . I’d like to say I’m very sorry . . . to see you this way. I’ve always considered you guys . . . Well, I’m fond of you. You don’t . . . deserve this.’ She coughed. ‘Oh my, I’m so sorry. Now tell me, who are the beneficiaries you have in mind?’
Mike ran through his estate. The house in West Virginia and its ten acres of land he left in its entirety to ‘Peter J. Nilsson, friend, unmarried’. Pete also got the proceeds of his life insurance policies, his personal effects, jewellery, silverware, furniture, pictures, books, objets d’art, automobiles and all other tangible personal property. ‘Mary Harris, sister’ got 90 per cent of his residual estate and all his US Savings Bonds. The other 10 per cent, he said, had to go to a place in Ireland, and he spelled out the name and address: ‘Sean Ross Abbey of Roscrea, County Tipperary.’
By the time he had dealt with all the legal questions, Mike was exhausted.
‘I see you have left nothing to your father, Dr Hess, or to your brothers,’ Doris said. ‘That is your call, of course, but I just need to check those are the arrangements you want.’
Mike was slouched in his chair now, white and frail.
‘Doris,’ he said, ‘those are the arrangements. Maybe we should add another clause to avoid doubt. Can you put in, “I have intentionally not made provision for my father and brothers and any of their lineal descendants in this Will”? That should make things clear. ’
Doris asked if he had any other questions before she sent the documents to be typed.
‘Just one thing,’ Mike replied. ‘I’m kind of worried Doc will try and get me shipped off to be buried in the Hess family plot in Iowa, and that’s something I don’t want to happen. Pete knows my wishes about my final resting place, but I’m worried Doc will argue parental rights – that he’ll try and contest it. Is there some legal way of making sure the right thing happens to me – when I’m gone?’
The Lost Child of Philomena Lee (Original Edition) Page 39