At the hospital, Harry followed the signs to the acute care ward where he found his mum and Claire sitting in chairs on either side of a hospital bed in a single room. Jim’s head was swathed in a large bandage. There were still traces of blood on the pillow behind him. His eyes were closed and he didn’t stir when Harry flew into the room. Jenny sat as close to the bed as she could get, holding Jim’s hand and gently stroking his pale skin. She looked shell-shocked.
‘Thanks for coming so quickly, darling.’
He gave her a kiss on the cheek and a quick hug then dragged in a deep breath. He was still puffing like he’d run a hundred-metre sprint in Olympic record time.
‘What happened to you?’ Claire asked, staring at his face.
He’d forgotten all about the makeup. He rubbed at his nose. ‘Does it look bad?’
A ghost of a smile flashed across her face. ‘Check the mirror. But don’t tell me I didn’t warn you.’ She pointed to the bathroom.
His makeup could wait. ‘How’s Dad?’
‘He’s stable now and the bleeding’s pretty much stopped. It looks worse than it is. They say head wounds always bleed lots. We’re waiting for a doctor to come and assess him,’ Claire explained. ‘They’re on a skeleton staff because of Christmas. The nurse who checked him thinks he needs sutures, but she also reckons he should get an X-ray of his head done too.’
‘And while he’s here they should do more scans and find out what’s going on.’
‘Yeah, I know, Harry, but they can’t do that here, they don’t have the equipment. Besides, even if they did, it’s a public holiday. They’re going to have to call someone in to do the X-ray.’
‘What’s the plan then?’
‘Get your makeup off first and by then the doctor should be here and we’ll know more.’
Harry went into the small ensuite bathroom, flicked on the fluorescent light and grimaced. Makeup was smeared everywhere. He used paper towels, surgical soap and the alcohol handwash, but it still took ages to remove the remnants of the latex nose.
When he heard voices, he stepped out of the bathroom. His father was awake. Harry gave him a wave and Jim lifted his arm off the bed and waved back but the movement was jerky, uncoordinated and seemed to take a huge amount of concentration for something so simple.
Harry faced the older of the two women – he presumed she was the doctor from the stethoscope around her neck – and held out his hand. ‘I’m Harrison Baxter. Harry. Jim’s son.’
She shook his hand and gave him a warm smile. ‘Nice to meet you. I’m Kristen Hyland, one of the doctors here, and this is Lisa Kane, the nurse caring for your father. Guess this isn’t the way any of you planned to spend Christmas Day, eh?’
Harry shook his head. ‘Definitely not.’
‘Lisa, do you mind taking the dressing down so I can have a look, please?’
Lisa donned gloves and carefully removed the blood-stained dressings. Harry resisted the urge to hurry her up. He wanted to see the damage for himself.
Once the bandages were off, Kristen examined the wound thoroughly. ‘Looks like you’ve done a good job of your head, Jim. How did it happen?’
‘I-I d-don’t know,’ Jim stammered. He cast a nervous glance around the room.
Kristen looked at Harry. Once again, the guilt surfaced and threatened to overwhelm him. ‘I’m sorry. You’ll have to ask my mum or my sister. I wasn’t there.’
And according to Jim, that was also part of the problem: Harry was never there. He was too busy swanning around in the city living the high life and had forgotten how hard things were back on the farm.
There was an element of truth in his accusation. Maybe Harry’s decision to leave Yallambah had been made for the wrong reasons – selfish ambition and a desire to prove his father wrong. To prove that he could succeed in his chosen profession. As a child he’d always sought his father’s approval and despite all his recent success, Harry still wished his father would acknowledge Harry was actually good at what he did. The problem was, Harry was still seeking the approval of someone who seemed incapable of ever giving it.
Over the years he’d internalised the pain of rejection and feelings of inadequacy. Riley reckoned one of the reasons he loved getting standing ovations was because it fulfilled some deep psychological need for approval. She was probably right. But for once Harry wished he could hear the words ‘You’re amazing’ or ‘I’m proud of you’ from his father.
Harry forced himself to concentrate on what Claire was saying. He looked over at his father, but Jim’s eyes were closed and he appeared to be dozing.
‘He tripped over the garden hose.’
‘Do you know what he hit his head on?’ Kristen asked.
‘The brick retaining wall,’ Claire said.
‘Did he lose consciousness?’
Claire looked at Jenny. She shrugged. ‘We don’t know. None of us realised he was missing.’
Missing? What? Why was no one telling him what was really going on?
‘Why was he missing?’ Kristen asked. ‘Is there anything else I need to know? Dementia? Or something else?’
Jenny brushed at a tear trickling down her cheek. Harry had to look away. He glanced at Claire and she was crying too.
Kristen pulled up a chair beside Jenny and sat. She placed a hand gently on Jenny’s arm, leaned in close and lowered her voice. ‘Does your husband have any medical conditions that might have caused him to fall? Heart conditions?’
When his mum started to cry in earnest, Harry laid a hand on her shoulder and squeezed tightly. She dabbed at the corners of her eyes with a soggy tissue.
‘That’s the problem, doctor. We don’t know,’ she said, her voice faltering.
‘What do you mean, you don’t know?’ Kristen asked, looking from Jenny to Claire with concern.
Jenny blew her nose again and cleared her throat. ‘At first it was this cough that wouldn’t go away, then he started having muscle cramps and spasms and stiff joints. That’s why we thought it was the flu.’
‘Has he been eating and drinking normally?’ Kristen asked.
Jenny twisted the tissues in her hand. ‘No. He’s been having lots of trouble swallowing. That’s why he’s lost so much weight. He can’t chew. I’ve been pureeing his food.’
‘Any issues with incontinence? Bowels or urinary?’
Jenny bit her lip before nodding once. ‘Both,’ she said softly. ‘It embarrasses him. He’s a very private man, you understand.’
‘I notice Jim’s having a lot of difficulty with his speech. Is that normal for him?’
Claire shook her head. ‘No, that’s new. It’s been worse in the last few days. Much worse.’
‘He keeps choking on his saliva too,’ Jenny added. ‘Like he can’t swallow.’
‘Any shortness of breath or breathing difficulties?’ Kristen asked. Behind her, Lisa stood at a table writing notes in a folder, her brows furrowed.
Harry stood to the side, listening quietly, taking everything in. But with each question, dread settled over him. He was no medical expert, but his father’s symptoms didn’t sound like any flu he’d ever heard of. And he could tell by the look on the doctor’s face that she was worried too.
‘What about cognitive changes?’ Kristen asked. ‘Any difficulties with memory or poor concentration?’
Jenny nodded vigorously. ‘It makes him so cross. He starts sentences and can’t finish them.’
Jim made another garbled noise and everyone turned to look at him. ‘So. Frustrating,’ he mumbled.
Kristen gazed at each of them in turn. ‘What tests has he had?’
‘The lot,’ Claire replied.
‘And he’s booked in for some electrical-cardiopathy test, or something like that, in the New Year,’ Jenny added.
‘An electromyography?’
Jenny and Claire nodded in unison.
Kristen hesitated, her eyes travelling around the room. ‘Did anyone tell you why, and what that test is looking for?’
Harry gripped the back of the chair as cold tendrils of unease slithered down his spine. Perspiration formed across his upper lip and brow and he wiped it away with the back of his hand. Was it hot in here?
‘An electromyography is often called a needle test because fine needles are used to record nerve impulses.’
Jenny and Claire stared at Kristen blankly. Lisa had stopped writing.
‘We’d be looking to see if any of Jim’s muscles have lost their nerve supply,’ Kristen continued as if that made more sense.
It didn’t.
‘What would that tell us?’ Harry asked. His question came out sounding like a bark and he instantly regretted his tone. It wouldn’t help anyone if they thought he was being accusatory. His anxiety ratcheted up a notch when he saw Lisa shuffle her notes and refuse to look at anyone. He had to give Kristen credit. She maintained her eye contact with him, only blinking once.
‘It’s a diagnostic test for Motor Neurone Disease,’ she said. ‘You might have heard it called Lou Gehrig’s disease or ALS – Amyotrophic Lateral Sclerosis.’
Harry’s anxiety exploded as his world shifted under him. Blood swooped to his feet causing his head to spin, and the crushing weight of something – What was it? Panic? Fear? Worry? – pressed down so hard on his sternum it made breathing difficult. Of all the things he’d anticipated, this wasn’t one of them. He remembered lining up on the steps of the Sydney Opera House with the cast of Les Mis and videoing themselves dumping buckets of ice over their heads to raise awareness and funds for ALS, but he’d never in his wildest imagination considered one day his own family would be touched by the cruel disease.
Beside him, Claire sucked in a breath and both hands flew to her mouth. She shook her head slowly, as if struggling to come to grips with what Kristen had just told them. ‘His GP vaguely mentioned MND as a possibility months ago.’ Her voice wobbled.
Harry stared at his sister in disbelief. ‘You knew it was a possibility and did nothing about it?’
Kristen put a hand on his arm. ‘It’s no one’s fault,’ she said gently.
‘But he’s already had an MRI. Wouldn’t that have shown up something?’ Claire asked, her eyes fixed on the doctor.
‘Not MND,’ Kristen replied.
‘So once we have the diagnosis confirmed, how will you treat it?’ Jenny asked. No one answered. Her brow creased as she looked from one to the other. ‘Claire? Harry? What does it all mean? I’m not following. What is MMD?’
‘MND,’ Kristen corrected her. ‘Motor Neurone Disease is a degenerative neurological condition that leads to the death of the neurones that send messages from our brains to our muscles. Once the neurons die, the muscles start to waste away. The disease takes away the person’s ability to move, speak, swallow, and ultimately to breathe.’
It was then that Harry’s knees buckled and he dropped into a chair. Jenny’s face was pinched and drawn, her shoulders slumped, as though the reality of the doctor’s words weighed heavier than lead. Claire looked like she was about to pass out or throw up. As soon as Harry saw the lone tear trickling down his father’s cheek, it felt like someone had vacuumed all the air from the room.
For a long time, no one spoke.
‘Do you understand what the doctor is saying, Dad?’ Claire asked.
Jim nodded slowly, opened and closed his mouth, but this time no sound came out. Claire burst into tears and bolted from the room. Jenny looked at the open door, then at Harry. He worked hard to keep his face neutral.
‘How bad is it?’ Jenny asked.
‘There’s no cure,’ Kristen said quietly.
Jenny blinked. ‘No cure?’
Kristen shook her head sadly. ‘Would you like to go and talk about this outside?’ she asked softly.
‘No. Jim wants to know. Isn’t that right, darling?’ She stroked his arm and leaned over to kiss his cheek.
Kristen looked at Harry. He would have loved to talk about this anywhere except here.
‘Mum’s probably right. Let me go and get Claire and you can talk to all of us together now.’
He rubbed his cheeks with his hands, feeling the rasp of stubble against his palms. He wanted to run. Run from the room, run from the hospital, run from the illness, and never come back. But he had to be stronger and braver than that. He felt anything but strong or brave right now, but his family needed him and that was what mattered. Claire had told him to man up, to grow up, to take responsibility, so that’s exactly what he would do.
He found Claire on the street, smoking a cigarette. Hadn’t she given up years ago? As soon as she saw him she stubbed it out under the ball of her foot.
‘The doctor wants to talk to us, Claire-Bear,’ he said kindly.
She sniffed loudly. ‘I can’t.’
‘Mum needs us.’
He took her hand and together they walked back inside. They sat in a circle around the bed and stared at Kristen as she explained what she thought was wrong with their dad.
‘Of course, I’m not saying definitively that he has Motor Neurone Disease. We can’t diagnose it without the proper tests, but from what you’re telling me, it sounds like that’s what it is.’
‘Why hasn’t anyone picked this up earlier?’ Harry asked, bitterness again filling his voice. Although finding out earlier wouldn’t change the diagnosis, it might have helped them be better prepared. ‘What about his GP? Claire said he’d suggested it was a possibility. Surely alarm bells should have rung and he should have sent him off for tests ages ago. Dad’s been unwell for months.’
Kristen hesitated. ‘There are plenty of doctors who may have never diagnosed or treated anyone with MND. I’ve cared for a number of people in Melbourne before I moved here. Jim’s symptoms are classic to me. And if it turns out I’m right, then I’m sorry. Very sorry.’
‘How long?’ Claire whispered.
Kristen didn’t hesitate. ‘Most people don’t live longer than five years.’
Harry hoped his father hadn’t heard the prognosis, but when he glanced over, Jim’s eyes were wide and full of silent tears.
Christmas Day. The day that changed their lives forever.
*
The following days were hellish for Harry. After a night spent in the little hospital in Beechworth, Jim was transferred to the larger hospital in Wodonga. After countless appointments with countless specialists, followed by countless tests, then more tests, the results were definitive. Jim Baxter had Motor Neurone Disease.
The official news hit them all like a category-five cyclone. Harry might not have got along with his father but that didn’t change the fact he was devastated. Every day he woke and wondered if it was a bad dream, but the moment he opened his eyes, reality kicked in.
Jim’s diagnosis became a death sentence over their heads. His deterioration was so rapid it was hard to believe he could keep going like this for five months, let alone years. He appeared to take the news better than all of them, although Harry suspected he didn’t totally comprehend what it meant. Or perhaps he was relieved to finally know what was wrong with him. The hardest part seemed to be when he realised he needed to let go of the farm. Simon’s nephew Zack had recently finished school and was looking for work, so they arranged for him to help keep things running as smoothly as possible until they could make long-term plans about the future of the farm. But that didn’t help Jim, who grieved the loss of his entire life and livelihood. The first time Harry saw his father really cry, he had to leave the room. He had no idea how to handle his father’s pain.
His mum hadn’t cried publicly since Christmas Day but the puffiness around her eyes was a dead giveaway that she shed secret tears at night behind her closed bedroom door. Harry’s heart broke for her.
Friends and relatives drove to the hospital in Wodonga to visit. And although everyone was kind and genuine in their concern, their platitudes simply reiterated the fact that this disease was terminal. It was like having a one-way plane ticket without a departure date.
Despite recent differences in opinion, Harry had always been close to Claire, but their dad’s illness drew them closer. Every morning, Claire, Jenny and the kids drove the half an hour from Yallambah to Wodonga. Claire made a second trip later in the day to pick Jenny up and take her back to Thornhill for the night. Harry offered to help with the driving, but Claire insisted he stay close to the hospital. He found accommodation at a cheap motel within walking distance of the hospital so that if his father needed or wanted anything, he’d be there.
He hoped he and his father might actually have a conversation and reconcile their differences, but so far Jim remained silent, barely acknowledging Harry’s presence. If only Harry could get him to open up and talk, but most days he struggled to speak full sentences or stay awake for longer than half an hour at a time. No one could believe how fast his decline was. They were referred to the Community Palliative Care team – the team of nurses and allied health specialists who would help make Jim’s illness tolerable when the time came. Harry had begged his mum to consider putting him into a nursing home but she refused to discuss it. She wanted him home on the farm. End of conversation.
As he sat watching his father sleep and wishing he was anywhere except the hospital, he thought about the dysfunctional relationship they’d had over the past fifteen years or so. The more he chewed on the bones of his discontent, the more his sense of hurt and anger withered until he couldn’t even remember why there was so much distance between them. The picture that kept running on repeat through Harry’s head wasn’t one he liked, and he saw he was as much to blame for their indifference as his father was. He closed his eyes and tried to dislodge the memories. He’d spent his entire life trying to impress his father but always ended up being let down. Why did he think things would be any different now?
He allowed his mind to drift to more pleasant things . . . Eddie. Despite everything going on with his family, he couldn’t stop thinking about her. She’d called a couple of times and left messages, but so far he hadn’t had an opportunity to respond. He’d started a few times but a text seemed an impersonal way to share such huge news, and he wasn’t sure he wanted to call and have the conversation over the phone either. After they got things sorted with his father, he’d go and visit her and apologise in person for not replying.
His phone vibrated in his pocket. Harry pulled it out and answered without checking who it was. ‘Hello?’ He kept his voice low so he didn’t disturb Jim, who was finally sleeping.
‘Harry. It’s Christine Jennings. I heard the news about your dad. I’m terribly sorry.’
He stood, walked over to the window and stared into the courtyard. ‘Thanks, Christine. It’s been hard. I’m glad you called. I wanted to talk to you.’ He removed his glasses and rubbed at his eyes. ‘I don’t know what to do. With Dad being so sick, I haven’t had time to rehearse. I haven’t sung a note since I got here. I would hate to let the cast down.’
‘Your dad would want you to do it,’ Christine said softly.
Harry wasn’t so sure.
Unexpectedly, hot tears pricked at his eyes and he brushed them away. Never in his life had he so badly wanted his father to hear him sing and now he wasn’t sure he could hold a note. ‘I don’t know if I can sing without breaking down,’ he said.
‘It’s still two weeks away. Plenty of time. Take each day as it comes. Spend time with your dad and trust your voice.’
‘Thanks, Christine.’ If anyone understood a singer’s fears that you were only as good as your last performance, Christine did.
‘How much longer will he be in hospital?’ she asked.
‘They’re hoping he can go home in the next day or two. His wound is healing nicely and they’ve started him on medication that will hopefully slow down the progression of the disease. It’s not a cure, but it’s something.’
‘Hang on to that hope, and let it motivate you to get out there and make this your best performance yet.’
‘I’ll try,’ he said.
‘Take care of yourself. I’ll say a little prayer for you.’
‘Thanks, Christine.’ He ended the call and pocketed his phone. Jim’s eyes flickered open. ‘I’m heading off, Dad. I’ll see you later.’
Jim closed his eyes again without replying. Once more rejection and disappointment squeezed tight around Harry’s heart. He brushed the emotions aside. As much as he craved his father’s approval, now wasn’t the time to be thinking of himself.