Story by Ian Baker

Nobody thought Fernanda would get multiple sclerosis. Her friends didn’t. Her children didn’t. And certainly, Fernanda didn’t. Even her oncologist, whom she had consulted about a tumour, and who was the first to notice something odd in her movement, thought she might have been drinking.

She was 39 when the diagnosis was confirmed, 15 years ago. Her marriage lasted another eight years, which made 24 years of marriage in all. When she separated from her husband, Fernanda recalls, she could still walk.

Now 54, she shares an airy and comfortable house in Melbourne’s north with her son and his fiancée. Her daughter, son-in-law and two grandchildren live nearby.

“I’m fine,” she says. “I’ve got my kids, I’ve got my grandkids, and I’ve got good friends. That’s good.”

Fernanda worked as a hairdresser before she had children. But for much of her adult life she has been a homemaker, cooking and caring for her family, much as her mother, an Italian migrant, had done before her.

When her mother cooked, Fernanda remembers, she cooked in abundance. “It didn’t matter what time you walked in to her house, she’d always ask you: ‘Have you eaten?’ If you said ‘No,’ then she set the table and you ate. And if you said ‘Yes,’ she’d make a plate to take home.”

Wednesday nights, for Fernanda, are family nights. Both of her children, their partners, and her grandchildren, join her for dinner.

“You make memories, you spend quality time,” she says of these gatherings. “You sit down and you enjoy a meal.”

“Honestly, to be in this job you’ve got to have a heart of gold.”

About 1000 Australians a year, mainly women aged 20 to 40, are diagnosed with MS. It is named for the formation of scars, called scleroses, on the tissue that transmits signals from the mind to the muscles. Fernanda has the most disabling type, primary progressive. She harbours hope that a new treatment she is testing might arrest its development. But every previous treatment has failed.

Her petite frame retains enough strength on her right side, only, to drink coffee and feed herself. “I’m still going to push myself so that whichever way I can do things, I will do them,” she says.

She does things by enlisting help from her team of about 10 disability support workers, whom she refers to affectionately as her girls. For their commitment to her, she is grateful. “Honestly,” she says, “to be in this job, you’ve got to have a heart of gold.” The girls, she says, are her hands and feet.

Meals are prepared in stages, which Fernanda plans. Successive workers complete the dishes over the course of a day.

Coordinating with her by phone to cover five short shifts a day, they get her up, help her dress, and assist her – with the aid of a hoist – to take bathroom breaks. Help her with cleaning and washing clothes. Get her to bed for the night.

After the essentials are done with, on many days they also help her to cook.

Meals are prepared in stages, which Fernanda plans. Successive workers complete the dishes over the course of a day.

Some of the girls are masterly cooks. Others are less experienced, or less familiar with Italian-Australian cuisine. They cover a broad spectrum of ages and backgrounds, and Fernanda says she loves working with each of them.

She reveals that as her capacities have declined, she has learned to be easier on herself, and on others. At one point in her life, she would iron even socks. Today, she irons nothing.

“You have to be very happy with whatever the girls are willing to do for you,” Fernanda says. “They are carers, and not cleaners or chefs.

“We work as a team, and that’s one of the things that makes the job so enjoyable.”

“If the tomato is cut one inch instead of half an inch, it’s not going to be a big deal. The taste is still there. It might not look the way you do it, but the taste is there. And then we perfect it as we do it more and more.”

The girls take pride in their serial cooperation on Fernanda’s behalf, a team member, Bakhita Arob, explains.

“When I arrive on my shift I find that other girls have done things that make my work quick and easy and relaxing,” Bakhita says, “So that I am not under pressure. We work as a team, and that’s one of the things that makes the job so enjoyable.”

On one Wednesday morning, Fernanda outlines her plans.

“Dinner is going to be spinach and ricotta cannelloni,” she has decided. “When my 10:30 carer comes in, we will get the spinach and ricotta mixture ready.

“We are not missing out on our favourite foods because I can’t cook any more.”

“When my two o’clock comes, we will make the sauce and fill the pasta. And then when I’ve got the next one, she will put everything in the oven and make the salad.

“When my children and their partners get home from work and arrive, with my grandkids, everything will be ready to serve.

“We are not missing out on our favourite foods because I can’t cook any more.”