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Highs – and lows – from a life lived in the moment

9 September, 2019

Outdoor sports enthusiast Jason Ellery and his wife, Nicole Ellery, open up about married life with a young family and a spinal cord injury.

“I never thought much about having kids,” says Jason Ellery, 32, who has two sons. Kyden has just turned four, and Jordy is seven months. Jason, who looks slight but wiry, and who worked until he was 24 as a carpenter, will tell you that he is not the sort of person who looks far down the track.

A former snowboarder, he likes to live in the moment.

“Unlike Nicole,” Jason says of his wife, also 32, with whom he has been very friendly since both were 18. The couple moved in together in their early 20s, renting a house in Melbourne’s south-east near where they grew up.

Nicole began working in physiotherapy. She recalls that about that time, she knew she wanted children.

Love fest: Jason, Nicole, Jordy and Ky.

“Nicole felt that what she could see around her when she was growing up was what she wanted her life to be,” says Jason.

“I didn’t really have that. I didn’t look that far into the future.

“And yeah, I never thought that I would have the time to spend with kids that I do nowadays.”

Nicole, who presents as gracious and open-hearted, had thought that if she became a mother it would be she who raised her children, mainly. Just like her mum, mainly, had cared for her, and for her sister and brother, while her dad, a tradesman, was busy with work.

She had never thought she would share her children so much with their father.

On a roll: Jason takes Ky for a spin.

Pretty special

“Jason’s a much better dad than I ever expected him to be,” she reveals. “And that makes me happy. It makes me want to cry.

“He’s still working, but not as much as he would have been. I know for a fact that if he was still working as a carpenter he would be working six or seven days a week. He would never be home.

“He has patience, and he plays. And that’s great, because I’m not like that at all.

“When Kyden was a couple of months old, I left them alone together for the first time. When I came back I saw that Jason had my T-shirt on. Ky had been crying, and Jason was trying to smell like me.

“That was pretty special.

“We’re talking about love and how do you get that with someone who uses a wheelchair. Well that’s something that makes me love Jason: the way he is with our kids. I can see how much he loves the boys, and how much they love him.

“Which makes me love them all. It’s just a big love-fest!”

Nicole laughs, conscious of how sentimental she may be sounding, and Jason, whom Nicole says is very short with words when it comes to talking about how he feels, laughs with her. Her description of family life is funny for its implicit contrast with how family life seems, for anyone, on rougher days. It is funny, but neither is joking.

Interesting times

“Life’s pretty good now,” Jason says. “I’m enjoying the family situation that we have at the minute. Spending time with the boys and being in the moment with them. Watching them laugh and grow. The naughty things they get up to.

“Ky is pretty good at getting away from me now. He knows how to play me. He used to go behind the couch or under the bed, where I couldn’t get him, if he was in trouble. But I always managed to get him. Or I turn it into a joke, so that he comes out.

“There will definitely be interesting times ahead as they get older. It’ll be fun.”

“I’m satisfied,” Nicole says. “It is hard with a newborn – lack of sleep and all that. But I can’t say at the end of the day that I’m not happy with life.”

She is aware that for many women, 32 is an anxious age.

Smooth sailing: Nicole and Jason celebrate an anniversary with a balloon flight over Melbourne.

“In terms of life stages – where you wanted to be in life when you were 32 – this is exactly where I wanted to be in my life,” she says. “I wanted to have the house, have kids, have the family. And I’ve got all that, and everything just goes nicely. We’re happy; we do things; we get out.

“Some things are harder. We all went camping the other week, for the first time. Jason and I, a six-month old, a three-year old, a wheelchair and all the other things we needed. Oh and the dog came too. It was a very full car, with a roof rack and trailer. But it was also pretty cool, camping together, just us. Setting up the tent with the boys. It went really well.”

Have snowboard, will travel: On holiday in the Canadian Rockies.

Working holiday

Jason left school at 17, took up an apprenticeship as a carpenter and got into snowboarding. When he completed the apprenticeship, he set up shop on his own, working mainly in private housing.

In 2011, at the age of 24, he decided it was time he did something different for a while. And so he took his snowboard and headed for Canada, where he joined the mountain maintenance team at Grouse Mountain ski resort. It was to be a six-month working holiday – analogous, Jason thought, to the gap-year undertaken by restless school-leavers. Something to do before life got more complicated. He had not asked Nicole whether she would marry him, but he had known that he wanted to stay with her.

Nicole had been accepted for training as a paramedic, and had been waiting for a placement to become available at short notice. So she stayed in Melbourne at the couple’s rented home, working as a physiotherapy assistant and fielding teasing remarks from her friends. It was about time, they reminded her, that either she or Jason felt the fabled seven-year itch.

About a fortnight from their expected reunion, fate intervened in a different way. Jason had taken a trip to Lake Louise, in Banff National Park, to explore the Canadian Rockies and get in some more snowboarding. As he launched from a jump, he remembers, he felt his board slip out from under his weight, unexpectedly and in a way that unbalanced him. In the crash landing that followed, he sustained a cervical spinal cord injury at C6 level, near the base of his neck.

He was evacuated from the remote site to Foothills Medical Centre in nearby Calgary, where he remained for a month. From there he undertook a 40-hour medivac flight to Melbourne, where he spent nine months at the Royal Talbot Rehabilitation Centre in Kew.

Nicole, with Jason’s parents and sister, and later Nicole’s mother also, had flown to Canada to be with Jason as his injury was stabilised.

Focus on recovery

“He did say a lot then that we were going to break up,” remembers Nicole. “He said things wouldn’t be the same, so why would I stay with him. It was a lot of the conversation over there. He was very unwell then, though, medically.

“I don’t remember any of that stuff,” Jason says. “The doctors had me on lots of drugs. At times I recall seeing cupcakes popping out of my laptop computer.”

Nicole acknowledges that Jason’s injury has imposed costs on her, as well as on Jason, with respect to sexual opportunity, but she plays down the severity of those costs.

The question whether she would remain with Jason was clouded for Nicole by the possibility that he would recover more mobility. His incomplete injury had left him with some strength in his arms and hands, and had not robbed him fully of feeling in his lower body.

“I had worked with stroke patients and people with brain injuries,” Nicole recalls. “I’d worked with people who had improved even when doctors said they would not. I knew that doctors could be wrong. There were people at Royal Talbot who had recovered some capacity.

“It was probably two years post injury before we decided to stop focusing on recovery and to just get on with life.”

No time to talk

Nicole felt further confusion from the renewed responsibility that Jason’s parents took for him.

“At Royal Talbot I had to share Jason with his family a lot more than normal,” she remembers.

“It felt like there were family or friends there twenty-four seven – and even when they weren’t there we would have the nursing staff, allied health, doctors, and other patients around.

“This didn’t feel ideal to me but it was what Jason needed.

“We didn’t really get any time to talk by ourselves for probably six months. It was like a group relationship and I was waiting in a queue.

“About that time we spent a night together at one of the self-contained apartments on site, and that felt like a relationship-saver. We could just sit back and talk and share a meal and watch TV, knowing that nurses were onsite.

Deep bond: Nicole married Jason in 2014, with a celebration that also marked the 10-year anniversary of their getting together as teenagers.

 “No-one had meant to crowd me out - everyone just cared. And I’m sure Jason’s mum and dad worried that I might leave. Now that I have kids, I totally get it. They didn’t want to step back, because then he’d sort of be on his own if I did leave.

“They did verbalise that they had seen that as a possibility. But in my head I hadn’t really any intention to leave.

“The thing was, Jason’s attitude didn’t change. If it had, we would not be together. But he was still positive; he was still, like, happy. He was still willing to give things a try.”

Nicole says she shakes her head to this day over presumptive comments she received from acquaintances.

“One just said: ‘When are you going to break up with him? You can’t stay with someone in a wheelchair – you can’t have kids or anything.’

“I always said to myself that if mentally Jason didn’t change, our relationship shouldn’t change just because of the physical stuff. If physical and mental had changed, it wouldn’t have worked for me.

“Where we saw relationships that did break up after a spinal cord injury, I feel that sometimes it was because the person in the wheelchair changed a lot – and not just physically.”

World beater: Spoils of victory from the Wheelchair Rugby World Championships, Denmark 2014.

World-champion team

Late in his time at Royal Talbot, Jason got a night pass and went with Nicole to see an Australian football match at the MCG. Also watching, and from the same wheelchair-accessible section of the stadium, was Wayne Bradshaw, an information officer with AQA/Spire.

“I could see that Jason was recently injured,” Wayne recalls. “He was in a hospital chair, and he looked scared.” Wayne, who had previously made a living from restumping houses, and whose marriage ended soon after he received a similar injury at 28, says it was clear to him that Nicole had a deep bond with Jason.

He spoke of what life might hold, explaining that it would be possible for Jason to work and play sport. He used rugby as an example. “I said that the people in our Paralympic squad even get paid to play rugby for Australia. It was like the next thing I knew, this kid was on the national team.”

Jason says he took up rugby for the fitness and companionship. But his selection for a world championship qualifying tournament in South Africa in 2013 brought him into the world of international competitive sport, where he remained until 2017. Snowboarding had been a hobby; wheelchair rugby with the world-champion team paid almost enough to survive on, and threw in the travel.

“It’s not huge amounts like an AFL player or anything like that, but it’s enough to cover your expenses,” Jason explains.

“Connecting with people through sport has really helped me move on with my disability because I’ve learned so much from other people. About how to sustain life with a disability, and what’s possible.

“I had the opportunity to travel, and get some cool experiences. You don’t always get to do a lot of sightseeing but it’s still a good experience.”

Patient and clever

Nicole too found support from the rugby community.

“While the boys played, the WAGS bonded,” she reveals. “We shared stories and advice. No question or topic was out of bounds.

“When I was with other wives and girlfriends, life with a wheelchair involved seemed more like the norm. And it was good to feel normal for a change.”

“Connecting with people through sport has really helped me move on with my disability because I’ve learned so much from other people.”

Fellow team-member and five-time Paralympian Naz Erdem recalls Jason as a confident player with a good all-round game. 

“He was a bit of a baby-faced assassin,” Naz remembers. “He was very patient and clever.

“When he got into the side, the competition was particularly tough at his function level. We had eight really strong players competing for three positions.”

Aware that his time in the spotlight could be short, Jason also took on several voluntary positions. There were stints with construction businesses, building on his skills as a carpenter, but there were also roles organising outdoor activities – for schools, and for team-building among adults. The latter led to a contract position on a project with YMCA, aimed at helping other people with a physical disability to get more active in outdoor environments.

“Over the past 12 months we facilitated six different camps and programs,” he explains. “We took people camping down at Wilson’s Promontory National Park. We had activities where people tried different bikes – there was all sorts of stuff. It was really fun, and it was great to connect my interest in outdoor sports with my work.

“The project is finishing up now, so I will have to find a new position. I’d like to continue doing this sort of thing if I can, but if it didn’t work out I would happily go back to construction. I still enjoy that.”

Invited to nominate his strengths in a business setting, he nominates determination and adaptability.

“And yes, the ability to push through and make something worthwhile.

“I have realised I enjoy project management – seeing something develop and grow over time.

“As much as I love being home and looking after these little guys, I know I need to find a career. Not just work; an actual career. Something I want to do. I guess I want to be fulfilled and successful. And I want to contribute.”

Friends in need

Jason, Nicole says, has the best group of friends. Many of them are men he has known since school. Some helped him complete a big timber deck that he built largely on his own, drawing on his carpentry skills, which extends the entertaining area of the couple’s uncluttered house.

“It was painfully slow and hard to do in some parts,” he acknowledges. “But it was something I just wanted to get done. Part of the difficulty was planning it so that I didn’t build myself into a corner. I had a couple of mates help me cut the timber, because the planks are really long and hard to move around. And some help to dig holes in the area beneath it so that we could get the stumps in.

“My friends still include me in everything. They have stuck by me, and they don’t let the fact that I’ve got a disability get in the way of things.

“I’ve never had the feeling that anyone tiptoes around me, or is uncomfortable in my presence. And I like to think that I’m available for my mates when they need me. I feel really lucky to have them.

Nicole is proud of Jason’s sustained production of the deck.

“I admire his strength,” she says.

Great group: Jason and Nicole with friends at their wedding in 2014.

“My friends still include me in everything. They have stuck by me, and they don’t let the fact that I’ve got a disability get in the way of things.”

“I will still complain randomly about the wheelchair situation when little things pop up. Maybe it has been a bad day, or I feel like I have been pulled everywhere because everyone needs me.

“But Jason never complains like that, and I think it makes me proud that he’s so strong. He just gets on with it, and that makes me feel like I should be a stronger person and whinge less.”

The couple married in 2014, with a February wedding that marked the month in which they paired up 10 years earlier. Jason had stayed with his parents after he was discharged from Royal Talbot, with Nicole a frequent guest. About six months later, the duo bought a house together and moved in.

Painful realities

Nicole acknowledges that Jason’s injury has imposed costs on her, as well as on Jason, with respect to sexual opportunity, but she plays down the severity of those costs. In part because she privileges what she describes as the emotional side of their connection. But also because erotic intimacy with Jason remains available to her.

“It’s obviously not the same, but we’re still able to be intimate,” she says. “Most people think you can’t, but there are those who can. The dynamics of it do change, but I wouldn’t say that changes there are the biggest effect from Jason’s injury. I really wouldn’t.”

Later, Nicole says she resisted an impulse to be more explicit for this story, from respect for Jason’s naturally greater reserve.

“It’s not always the case that someone with a spinal injury can’t feel anything below the waist,” Jason observes. “Luckily for me, I still have feeling below the level of my injury, albeit not normal feeling.

“Everyone is so different. It’s definitely a challenge that people with spinal injuries face. It’s just something that everyone has to work through in their own way.”

What Nicole names as more affecting are the painful realities of becoming pregnant via IVF, and more enduringly, moments that remind her that she had thought life would look different. 

“You’ve just got to take the good moments, and forget the bad ones.”

We get out: Jason with Ky in a favourite environment.

Take the good moments

“I thought a lot of things were very unfair,” she recalls. “I didn’t get to do paramedics. That comes up a bit but it’s a joke now. I was allowed to defer for a few years, but then I realised that my priority by then was having children.

“And then having kids by IVF – not that it matters, but it wasn’t the way I’d planned it. All the processes we needed to do took a toll on me, and only my first pregnancy happened first-go. I felt like it was unfair that Jason had the injury but I was the one having to go through the torture.

“I think the biggest strain on the relationship was when our first child arrived. That was so hard, and it’s still hard with our second. I became very stressed, because I started to realise that things I had envisaged were definitely not going to be how I had thought they would be.

“For example, I had just presumed I’d be a stay-at-home mum, and that we would live comfortably on Jason’s earnings.

“Physically, one of the biggest things I still struggle with is when we go places and are in a situation where you would stand next to your partner and hug him. We can’t do that. I guess when you’re female, usually you have a guy who is bigger than you. But I’m always having to lean over. It doesn’t help,” she says, sharing a joke with her husband, “that Jason’s not affectionate at all.

“I recognised that hugging thing only last year. I knew something annoyed me at those times but I couldn’t figure out what it was. It was a girlfriend who pointed it out to me – she asked if it bothered me. I was like, ‘That’s exactly what it is, and yes it does bother me!’”

Jason understands that at such moments his wife will feel nostalgia for her life with him before he was injured.

“My disability does put extra pressure on her,” he says. “I can get the boys in the car. But if they’re not cooperating, or if it’s raining, Nicole has to help get everyone in the car and then get my chair in the car.

“She will say she is sick of this, or annoyed by that. There are definitely hard times and tough times - it’s not all smooth sailing always.

“You’ve just got to take the good moments, and forget the bad ones.”

Author Ian Baker is a content writer with AQA/Spire. All images remain the property of Jason and Nicole Ellery, and have been published with their permission.

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