by Fiona Lowe
She had no idea. In many ways her and Jon’s relationship was on the same road it had been for months, only they’d changed lanes. The destination, however, remained undisclosed. But despite what Jon had offered her and her split-second wobble, she was staying for the journey.
Tara and Jon had told Ian the diagnosis—they needed his help with the school run and the children’s after-school activities when medical appointments kept them in Shepparton. They were yet to tell their friends or employees. Jon didn’t want to be rushed into anything and Tara agreed. They both needed time to wrap their heads around not only the disease but the ramifications. How could they answer other people’s questions when they didn’t fully understand things themselves?
It hadn’t been difficult to hide Jon’s medical appointments. As Tara hadn’t told Kelly or Rhianna why she’d needed childminding the day Jon fell, there’d been no reason for the women to follow up. And the Hoopers’ staff were used to Jon being in and out of the store and contacting him by phone. If anything had raised their suspicions, it was Tara answering his phone and troubleshooting when Jon was having his MRI and meeting with the movement specialist.
Naively, both of them had assumed Jon could take a bunch of pills each day and everything would return to normal. It was their first misconception on a very long list.
‘It’s a bit of trial and error to get the dosage right,’ Dr Jaya told them. ‘Fine line between easing the motor symptoms and making them worse.’
There were other side effects and Jon got the nausea and vomiting almost straight away. Yet another drug got added to the mix. It was hard to tell if his drowsiness was caused by the disease or the drugs. More worrying were the possible big side effects like hallucinations and impulsive and compulsive behaviours.
When Tara asked Dr Jaya and the pharmacist what to look for, they’d explained those side effects usually occurred in activities that gave an immediate reward or pleasure, such as eating, shopping and gambling—and sex. The irony of Jon possibly experiencing increased sexual thoughts and behaviours backhanded Tara with the sting of a slap. Be careful what you wish for. Right now, their sex life was so far down the list of concerns, it barely registered.
She hated how she’d misinterpreted the signs of Parkinson’s disease, allowing them to fuel her anxieties and frustrations about their marriage. To cloud her judgement to the point she barely recognised herself. Whenever she thought about her own obsessive and compulsive behaviours with Zac, she broke out in a rash. But there was no hiding from her stupidity. Her strained paraspinal muscle still caught her if she moved too quickly.
Now she had a new obsession—reading everything she could about young Parkinson’s. Unlike the difficult months preceding the diagnosis, when she’d been flailing in the dark about why their marriage was floundering, Parkinson’s was a known threat. The information she found informed and terrified her in equal measure, and she became constantly vigilant, searching for signs of Jon being obsessive or compulsive about anything.
‘You’re doing it again,’ he’d say.
‘What?’
‘Staring at me as if you think it’ll fix everything. It’s bloody annoying.’
‘Sorry.’
If medical appointments, medication and Jon’s general fatigue weren’t enough to deal with, their social worker had ‘strongly recommended’ they attend a Parkinson’s support group.
‘Most meetings are informal,’ Donna had said, ‘but a few times a year they have a guest speaker. You’ll find it useful. There’s a lot of value in a shared experience. Remember, you’re not alone in this.’
But Tara felt excruciatingly alone and she was certain Jon did too. He’d retreated into himself, avoiding the cricket club and their friends. She didn’t know if he was depressed or just finding his way through the complicated maze Parkinson’s had dropped them in. Either way, she wanted to do everything she could to help him. Help them both. If that meant walking into a hall full of strangers, then so be it, which was how they came to be standing outside a community hall in Mooroopna. The noise of animated conversation drifted towards them.
‘Ready?’ she asked.
Jon didn’t say anything so she took his hand and walked inside. Her feet stalled at the entrance to the room. Was there anyone here under the age of seventy?
‘Jesus,’ Jon muttered.
The chatter ceased and several grey-haired heads swung in their direction. Some people sat, others stood. A couple of attendees had walkers parked by their chairs.
Should they leave, Tara wondered. But a woman was waving them over.
‘Welcome. I’m Jill and you must be Tara and Jon? Donna told us you were coming. Sign in and write yourselves a temporary name tag. Use big letters.’ She chuckled. ‘We want to be able to read it.’
‘Will do.’ Tara forced a smile and glanced at Jon. Since starting on the drugs, his Parkinson’s mask had faded, but right now, seeing his dark brows drawn down in a Flynn-esque scowl, she wished it back.
She wrote their names in large capitals, peeled off the backing and stuck Jon’s on his shirt, leaving her hand splayed on his chest. ‘It can’t be any worse than the bowling club concert Ian dragged us to,’ she joked, hoping for a smile.
‘Wanna bet.’
Jill insisted they sit in the middle of a row of chairs. As everyone looked at them, Tara felt like they were an exhibit at the zoo.
Jill read out some notices—there was a chair exercise group starting up on a Tuesday at ten in the morning; a show of hands was requested for interest in an outing to Morning Melodies; and Kas and Andy needed at least two people to play five-hundred on Wednesday afternoons. Tara wondered if they’d got the venue wrong and landed up at the Senior Citizens.
With each announcement, Jon’s tension ratcheted up until it threatened to push Tara off her chair. She rested her hand on his jiggling thigh.
‘Please welcome today’s guest: Sandra, from Leisure Assist in Melbourne,’ Jill finished, and took a seat.
There was a polite scattering of applause and Sandra, a woman in her fifties, clicked a laser pointer. The PowerPoint slide behind her declared Embracing the Journey.
‘It must feel like getting Parkinson’s is incredibly unfair, especially as you’ve worked hard all your lives,’ she began. ‘But this is your fork in the road. Your chance to take a positive from a negative. This is the time to reassess and prioritise.’
Photos of iconic travel destinations flashed up on the screen behind her.
‘Stop dreaming about that trip of a lifetime. Just do it! Imagine cruising the Pacific or taking a famous train journey. Follow the old camel train route on the Ghan between Adelaide and Darwin or the exotic romance of the Orient Express. Slow travel. No need to rush. It’s the perfect way to travel with Parkinson’s.’
Sandra outlined the many and varied holiday options her company offered, including destinations specifically tailored for the mobility-challenged and discounts for carers. ‘And if I haven’t convinced you yet, let’s hear from some of our satisfied customers.’
A video commenced, showing a group of happy people heading off on a bus trip; a small group being met at an airport by smiling staff before being transported to a gate lounge; an older couple kissing under the Eiffel Tower; and a man in his seventies using a cruise ship’s gymnasium.
The camera panned in. ‘I used to live to work,’ the man said. ‘Getting sick was the wake-up call I needed. Life was passing me by. This is my fourth trip with Leisure Assist. What I love about cruising is I can still exercise and the time-zone changes are slow. It makes it easier to juggle my medication.’
Three more testimonials followed with similar messages—retirement was the best thing since sliced bread. The final scene was a family group with an older couple holidaying with their children and grandchildren.
As brochures were handed out—all with Sandra’s business card neatly stapled to the front and her phone number highlighted in fluoro yellow—there was some general chat
ter about holidays.
The woman next to Tara said, ‘What do you think about that then?’
Tara didn’t know where to start.
‘And now for the exciting news,’ Sandra said. ‘We’re offering an all-expenses-paid round-the-world cruise for two in a wheelchair-friendly stateroom with transportation and assistance at every port. To be in the draw, all you have to do is register on our website.’
She thrust an iPad at Tara.
‘I don’t think this is really for us,’ Tara said.
‘Of course it is. Embrace the journey. Remember, life doesn’t stop for you to catch up.’
A bristle ran up Tara’s spine. ‘You don’t under—’
‘Embrace the journey?’ Jon’s voice boomed, silencing the room. ‘Sounds more like “You’re sick, suckers, let me take your hard-earned cash.” Does it look like we can retire? That we can take off for three-quarters of a year? Christ! We’ve got a business, a mortgage and two young kids to raise.’
Sandra’s mouth was opening and closing like a goldfish.
Making a scene in public, Tara, is the height of bad manners. As her mother’s words crashed into her, Tara momentarily considered smoothing the choppy seas they’d just created. But what was the point? Jon would never come back to this group and she didn’t blame him.
She stood and took his hand and they walked out of the hall together, letting the doors slam shut behind them.
‘So, that seemed to go pretty well,’ she said.
For the first time in a long time, Jon laughed. It was worth failing support group just to hear the sound.
‘Yeah, we’ll get a black mark for sure.’ He sighed and raked his hand through his hair. ‘I’m so bloody sick of driving to the hospital. I’m sick of medical appointments. Sick of being asked how I’m feeling. I just want to go home and be normal.’
Tara had no idea what normal was any more. Jon was gripping the car keys tightly and her sharpened awareness noticed the slight tremble. Was it Parkinson’s or was he just over-gripping the keys?
‘Let’s invite the gang over Friday night,’ he said. ‘They’re the only support group we need.’
Tara was torn. This was the first time since the diagnosis that he’d shown any interest in being social and she wanted to encourage it. But it wasn’t enough to stop agitation plucking at the strings of her concern.
‘Is Friday night a good idea?’
‘We’ve always done Friday or Saturday night.’
‘Yes, but you know how tired you are at the end of each day. By Friday, you’re beyond exhausted.’
His mouth hardened into familiar and stubborn lines. ‘I’m not giving in to this fu—freaking disease. I’ll be fine.’
She remembered the previous gatherings when she’d thought he was stumbling drunk. Thought about the words of caution from the movement specialist about fatigue, and the counsellor talking to her about the stages of grief and how Jon was bouncing between anger and denial. Tara knew how stubborn he could be. How he’d push through until he literally fell over, leaving her to pick up the pieces—physically and emotionally. One of them had to be sensible. One of them had to accept this disease was in their lives and staying.
‘Doing things differently isn’t giving in,’ she said. ‘What about Sunday brunch? It’s not like any of us get a sleep-in anyway. We can do eggs and bacon and pancakes on the barbecue and the kids can play. Then people can head off for the rest of their Sunday.’
‘And I won’t be tired.’
‘That’s the plan.’
He cupped her cheek, caressing her skin with his thumb. ‘I’m sorry I’ve been so difficult to live with. I should have told you I’ve been shit scared for months.’
She thought about her recent behaviour. ‘You don’t have a monopoly on being scared. I thought you didn’t love me any more and I made everything about me instead of noticing what was going on with you. I’m sorry too.’
‘Like when you convinced yourself I was having an affair with Rhianna?’
‘Yes.’ A flash of herself straddling Zac thwacked her hard and she winced. ‘Stuff like that.’
His mouth pulled down in a wry smile. ‘Even if I’d wanted to have an affair, which I don’t, I’ve been too bloody exhausted just getting through the day.’
‘I know that now.’
‘I love you, T.’
‘I love you too.’
He pulled her in close and kissed her in a way he hadn’t done in months. Long and deep, like a lover. She tasted need and desire. And relief. The world steadied. This was the Jon who’d been absent for so long. This was Team Hooper.
He suddenly sagged, his weight pressing against her, threatening her balance. She braced herself and gripped his arms. ‘You okay?’
‘You have a powerful effect on me,’ he joked.
But when he stepped away from her, fatigue was dragging at the corners of his eyes, drooping his shoulders and hanging off every part of him like an ill-fitting coat. It was hard to know if it was the Parkinson’s or a side effect of the drug treatment.
He thrust the car keys towards her. ‘Can you drive home?’
The question hit with a sharp arrow of loss. Jon loved driving and hated relinquishing the wheel so Tara had stopped offering years ago unless it was a long road trip. Now he was asking her to drive a fifty-minute journey at three in the afternoon.
The weight of being a carer settled over her as tight as clingwrap.
The invitation to brunch wasn’t as well received as Tara had hoped.
Kelly had screwed up her face. ‘But we always do Friday or Saturday night.’
‘This isn’t you trying to inflict your healthy living obsession onto us, is it?’ Rhianna asked. ‘We don’t have to go for a run too?’
Tara had counted to ten, reminding herself she was doing this for Jon. ‘We thought it might be fun to mix things up a bit.’
‘Maybe.’ Kelly looked dubious. ‘There’ll be mimosas, right?’
Tara hadn’t planned on serving alcohol. ‘Won’t that just make us sleepy?’
‘Exactly,’ Kelly said. ‘Al can be on kid duty all afternoon.’
‘Kelly’s right,’ Rhianna said. ‘It’s not brunch without mimosas.’
By the time Sunday morning arrived, Jon was looking rested but Tara felt wrung out. Protecting Jon’s energy levels meant she was doing more of everything at home and at work. Jon was giving her a crash course in ordering and she was also the go-to person between one and two thirty each afternoon when he went home to rest. It was the key to him managing the workday as well as being sentient for the kids in the evening.
He was definitely better in the mornings. The medication was still being tweaked but it had improved his muscle stiffness and eased the tremors, although there was still the issue of random involuntary movements. The day before, Jon’s arm had jerked at breakfast, knocking over two litres of milk. A white waterfall had cascaded from the bench onto Clementine, who’d sobbed as if she’d been scalded.
Flynn had grinned. ‘Does this mean I don’t get into trouble now if I spill things?’
Trying to explain Parkinson’s to the children without terrifying them was difficult. As they’d both been at home when Jon fell, it wasn’t possible to hide the disease from them. But Tara didn’t want to upend their safe world and fill it with anxiety either. After talking with Donna and reading articles online, they’d gone with a basic explanation.
‘Sometimes Daddy’s hands or legs might shake. When that happens, he might not be able to catch or hit a ball.’
‘Or use a nail gun or the jigsaw,’ Flynn said.
‘That’s right, but most of the time he won’t shake.’ Tara had said it more as a prayer than a truth.
They’d avoided information about possible problems with swallowing and speech, hoping they wouldn’t appear until far into the future. Knowing hope didn’t protect them one little bit.
The children had listened, but when Tara asked if they had any questions
, all they’d said was, ‘Can we watch TV now?’
It was hard to know how much they’d taken in. Flynn seemed fine, but Clementine was demanding a lot of cuddles from Tara and avoiding Jon. Tara couldn’t accurately recall if her daughter had been doing this before the diagnosis—kids went through phases of favouring one parent over another—or if the avoidance was connected to the Parkinson’s. But she added it to her ever-growing list of things she needed to watch out for so she could act and keep her family safe.
On Sunday morning, the gang arrived on time and the children wolfed down the pancakes before running off to play in the garden. There’d been less drama with the kids than at their evening gatherings and Tara wondered if they should have done brunch years ago.
Allowing herself to relax, she watched Jon happily holding court at the barbecue in the same way he’d done for years. She noticed the occasional jerk of the spatula, but he didn’t appear bothered by it. He was fully engaged in the conversation about work, cricket, the school working bee and town politics.
There was a lot of discussion about the mayor, Geoff Rayson.
‘I reckon Ainslea Park’s a front for something fishy,’ Kelly said. ‘I mean why are the Chinese visiting? They don’t race horses, they just eat them.’
‘I thought it was the Arabs who were interested?’
‘If the Chinese are going to buy anything in this town, it’s more likely the dairy. That way they can corner the baby formula market,’ Al said.
‘I thought they did that already. Isn’t it our biggest unofficial export?’ Rhianna said.
‘Don’t wish the Chinese on me!’ Kelly said. ‘Oh, wait. Do the Chinese hate the Muslims? I’m on board if they sack Fatima.’
‘Talking about Muslims, how are the neighbours?’ Brent asked. ‘Broken into the house yet as well as the store?’
‘They’re not like that,’ Tara said, guilt squirming in her gut. ‘Actually they—’ she realised if she said they were helpful, she’d have to say why, ‘—keep to themselves.’
‘A group of six of them came into the shop the other day. I followed them so they didn’t have a chance to pocket anything,’ Rhianna said.