Tahnee Orchard knows better than most life can change in a heartbeat.
She had a plan – to leave her country home in Benambra for life as an air hostess – but that all changed in the moment she met Craig Orchard.
“When I came back, my school held a debutante ball, which included Craig’s sister,” she says.
“We got talking at the after party; something clicked and we haven't left each other’s side since.
“He has the bluest eyes and a make-your-knees-weak smile – I always thought he was dreamy, but he was a bit of a wild one.”
Tahnee’s new plan was to grow old with her handsome cowboy, but just like the day she met him, her future changed in another moment, six years into their marriage.
“In 2010, I started dragging my leg and thought I was just unfit, so I bought a treadmill,” she says.
“I had trouble keeping rhythm when trying to run and was uncoordinated and unbalanced.
“My arms and legs were jumping about and I had no control over them.”
Countless doctors, chiropractors and physiotherapists later – a friend of a friend wrangled Tahnee a spot in the St Vincent’s Hospital with strict instructions: do not leave until they find out what’s wrong.
“In February 2011, after a week of testing with electrodes, blood tests and MRIs, the neurologist came into the room and asked me how old my children were – I said, six and four,” Tahnee says.
“He said, ‘I am sorry, but do you know anything about motor neurone disease?’
“I said, ‘Like Stephen Hawking, the scientist in the wheelchair’, and he said, ‘Yes – that’s what we have come up with unfortunately’.”
When Craig heard this, his mind went to Peter Canning, a Dinner Plain man who died of the disease, and whose memory lived on in a fundraising football game named in his honour.
“Tahnee and I had played in that match – I wouldn’t have picked her having that at the time,” he says.
“She got sent home, and they said she’d get worse.”
Craig says for a couple years, she was still walking and driving.
“She was stubborn – she refused to use a wheelchair,” he says. “Then all her muscles started cutting out, and her fingers started curling up. She’s at the stage now where she can’t do anything by herself.”
Tahnee has now lost the ability to talk.
She tells me how it feels to live with MND, by typing her answers with her thumb.
“Think of the worst cramp you’ve ever had and times that by 100 – that’s the type of cramps I have,” she says.
“My arms and legs feel as though the bone is twisting by itself; I try and stretch it out but it doesn’t help – all I can do is breathe.
“My throat has started to cramp shut, so that’s scary, and when eating, food can get stuck and block my airway.
“I used to freak out, but now I try to stay calm until someone can get it out – poor Craig, I bit him once.”
Tahnee finds it hard to control her emotions.
“I may cry when happy, or laugh when sad,” she says.
“My son hurt himself recently, and I laughed, but didn’t mean to.”
Dallas, 12, and Bonnie, 10, don’t know much about Tahnee’s condition.
“We’ve never really sat down and explained anything – they know she has something wrong with her and probably won’t end up well,” Craig says.
“Bonnie watches Wild Valley all the time, because she can’t really remember mum when she had working arms and legs.”
It was another life-changing moment when the ABC contacted Craig about producing Wild Valley, a documentary they wanted to make on brumby running.
Tahnee and her father Jock owned a sanctuary, the Australian Alpine Brumby Park, on more than 300 hectares of bush near Benambra.
The film crews followed Tahnee and Craig as they built a hut to live in the park.
The cameras were there after the land was massacred by the 2003 fires, and captured the intimacy of their 2004 Valentine’s Day bush wedding – on horseback, of course.
Footage of the Orchards ploughing through the snow on their thoroughbreds, cornering the mobs of wild horses and expertly lassoing, is awe-inspiring.
It’s what Tahnee misses the most.
“My sister and I grew up climbing all over brumbies and would always have a foal in the chook pen to get quiet enough to ride when it was older,” she says.
“We would go down to the paddock, tad-poling in the washout, and Starlight the brumby foal would follow us like a dog.
“When I was eight, my dad taught my sister and me how to crack a whip, and then we started going to the bush races and competitions.
“We learned tricks from other friends and got good enough we were selected for the team in the opening ceremony at the 2000 Sydney Olympics.”
Tahnee especially misses riding horses ‘with some snot about them’.
“It’s the adrenaline rush of galloping flat-out after a mob of brumbies, wind in your face, feeling invincible,” she says.
“I miss walking too; now that I can’t walk anymore, I sit in an office chair and I scoot around the house backwards with a cup holder on the arm rest for my drink and straw.”
Tahnee’s name now features alongside Peter Canning’s as part of the MND Mountain Challenge, and the community rallies around her and her family.
“The high country breeds genuine, good friends who will do anything for you without hesitation when you are having a rough trot,” she says.
“A local lady said recently, ‘we all thought you would be dead by now’ and I said, ‘I know – me too, I feel like a fraud because I am still alive six years on’.
“The future is fairly grim and not going to get better.
“I will miss out on a lot of milestones with my kids and Craig – birthdays, weddings, grandkids, growing old.
“I hear people moan about being old, but I think they are lucky, because I won’t get that chance.”
It’s the little things that give Tahnee happiness and hope.
“I try to put some pink lippy on everyday, which makes me smile,” she says.
“Craig often laughs and says it didn’t say in the marriage contract he had to be a hairdresser and makeup artist, or he would have done a course.
“He and the kids, who I love, are my world.”
The fight in Tahnee that Craig fell in love is what he thinks has helped her through this journey.
“It really changes your life, but I think it makes you a better person,” he says.
“It’s a really hard thing, but you just keep going.
“Tahnee’s stubborn and doesn’t give up – I can see it in Bonnie, in the way she acts.
“She’s got a fair bit of fire in her, and Tahnee has plenty of that.”