‘I still have a job to do’: The MP diagnosed with motor neurone disease at 44

“Good, thanks” is the response often given by those with a chronic illness or disability when asked how they are – despite this being far from their reality. This series looks behind the masks of those living with chronic illness and takes you into their world.

One day, you’re living your life as you always have, absentmindedly ticking tasks off your to-do list and getting to and from work without much thought. Then, the next, everything changes.

You dismissed the tingling and numbness in your hands as nothing significant, but then you feel weakness in your arms, then your legs. Little niggles can no longer be ignored. Then you’re diagnosed with a life-changing illness.

It’s a situation Emma Vulin, aged 44, knows all to well.

Emma Vulin, 44, was diagnosed with the rapidly progressive neurological disease motor neurone disease.Credit: Simon Schluter

The Labor MP for Pakenham was diagnosed with the rapidly progressive neurological disease motor neurone disease, known as MND, earlier this year.

MND is a debilitating condition that stops the brain from sending vital messages to the rest of the body to tell it to talk, walk, swallow and breathe. MND is terminal and the average survival time after diagnosis in Australia is two and a half years.

Vulin has seen the effects of the disease escalate quickly.

“Four weeks before [the diagnosis], I was cutting up watermelon for the kids to eat, and now I can’t cut,” says Vulin. “I’m soon going to be at a point where I can’t do things like my make-up or shave my legs. I don’t know how long it will be until I need a personal carer.”

In the weeks following her diagnosis, Vulin was conscious of not letting those around her see her struggling but, as her illness advances, she’s become more comfortable letting others see her reality.

“At the beginning, I was trying to not make it too visible, but I can’t hide it any more.”

Vulin lives with her partner of five years, Matthew, and her two teenagers, Sienna, 17 and Sage, 15. She considers herself one of the “lucky ones” to have a support system around her.

“Matt is my knight in shining armour. He’s put his career on hold for me,” she says. “He cooks all the dinners, and when I cramp – which is a lot, and it can be really painful – he will massage my forearm or hand. He does up my bra now too because I know that movement will make me cramp.”

Emma never imagined she’d be relying on her kids at this point in her life to help with everyday tasks, but says they have taken on their new role with gravitas.

“They’re really wonderful humans,” she says. “Sienna just has this strength, organising fundraisers to raise awareness of MND, she’s amazing.”

Despite their readiness to help their mum, Emma says she’s all too aware of how they’ve been affected by their new reality and tries to be strong for them.

“I think one of the hardest parts is sometimes wanting to have a really massive cry and realising that’s probably not the best thing for my kids.”

It’s not just at home that Vulin feels supported. At work, her office manager – who happens to be a professional masseuse – offers to massage her hands.

This isn’t the first health blow Emma’s had to navigate. The 44 year-old suffered a stroke at the age of 36. She recovered physically after eight months of extensive rehab, but psychologically she has never been the same.

“It changed me. That was when I said, ‘you have to do everything you can because life is short’.” And now, in the face of a terminal illness, Emma has doubled down on what’s important in life.

“I’ve realised how precious time really is. When you have people you haven’t seen for a long time reaching out and wanting to catch up, I need to politely say no,” she says. “People mean well, but I need to spend quality time with my kids and close friends.”

It’s no secret the fast-paced life of a politician is all-consuming and not for the faint-hearted, but Vulin has no desire to slow down, driven by her devotion to serve her community.

“I feel like I still have a job to do and have something to contribute. I want to advocate for those who are most vulnerable and overlooked in society. I want to make a tiny bit of difference while I still can.”

The future for Emma is uncertain. Her disease will progress, and along with that come the unknowns, but she’s determined to confront the disease head-on.

“I would like my kids to know that their mum was a fighter.”

Brooke Campbell Bayes is a journalist, producer, wife and mother to two young girls. She also has multiple sclerosis. With 49 per cent of Australians living with a chronic illness or disability, she knows she is not alone.

Make the most of your health, relationships, fitness and nutrition with our Live Well newsletter. Get it in your inbox every Monday.