Melissa met Damian when she was just 17 years old after moving to the Gold Coast from her childhood home on North Stradbroke Island. By the time she turned 24 they were happily married and, like all great love stories, they’ve been together ever since.
But what makes their story unique is that, just two years after getting married, Damian lost his eyesight in an accident.
“Our world turned upside down – it changed completely,” Melissa says. “We were young, healthy people suddenly going into a world of hospitals, doctors’ appointments and tests.”
Damian had been playing golf when a ball hit his eye and the blunt trauma damaged it irrevocably. He had already lost the vision in his other eye from a childhood accident. Despite more than 10 hours of surgery, Damian was left blind.
“I remember sitting on the bed and seeing all these cars going past the hospital and I’m like: ‘Hold on – shouldn’t the world stop? My world has stopped, shouldn’t everyone else’s?’” Melissa says.
With Melissa’s help, Damian not only recovered from his injury but regained his independence. He’s now an ultramarathon runner and cyclist. Today the Williams family – Melissa, Damian and their two children – live in the Gold Coast suburb of Labrador. Melissa is Damian’s carer but also has a career in mental health and disability.
As their family has grown, so have their health needs.
“Maintaining a family of four’s health records when caring for someone with a severe disability is daunting,” Melissa says. “Not everything is given to you in hard copy so you have to come home and handwrite everything.”
While the Williams household now runs like a well-oiled machine, Melissa says the early days after Damian’s accident were difficult.
“Getting home was probably the hardest, because we were thrown together like a retired couple and we were only 26,” she says. “But I become organised, very quickly.”
Every morning, Melissa gets up early to make Damian breakfast while he trains. She drops him at the gym before taking the kids to school, then heads off to work. Melissa’s life is made easier by Damian’s insistence on being as independent as possible.
“We’re husband and wife,” she says. “Dame’s disability doesn’t own us. We still fight, we still laugh and we still do everything a normal couple does. It just so happens that Damian needs that little bit of extra care.”
This desire for independence is also what led Melissa to My Health Record: “If he wants to keep something private, he can,” she says. “I’ll use the computer for him but he’s actually the one with control.”
Melissa’s mother passed away after contracting staphylococcus. With this illness and an existing mental health condition, she was unable to make decisions about her healthcare. It was left to Melissa and her sister to make those difficult choices.
“Mum couldn’t really comprehend what was going on,” Melissa says. “We did the best we could but no child should have to make these decisions for their parents. Nothing prepares you for that.”
It made such an impact on Melissa that writing an advance care plan was the first thing she and Damian did after her mother passed.
“We don’t want our children to make those decisions for us. I think emotionally you’re going through enough and having all that thrown on top of you is just too much,” she says. “We ended up filling one out straight away and uploading it to our My Health Record instantly.”
Lightening the load
While Melissa and Damian have a full schedule, they still make time to give back to the community. Every Thursday morning Damian cooks a soup which they take to Soul Soup, a charity which feeds the homeless and disadvantaged.
They also pick a charity every year, which Damian raises money for through his marathon running. He once raised $17,000 running seven marathons in seven states over seven days for child protection organisation, Bravehearts.
“I’m the organiser,” Melissa says. “I do all the raising and planning but Damian puts the hard yards in. He’s the one who runs the marathons and gets the blisters and the pains and aches. We’re a great team.”
With so much on her plate, Melissa is happy to outsource admin wherever she can. My Health Record provides peace of mind, knowing if anything happens there’s a digital record in place. It also means Melissa doesn’t need to rely on her memory to manage her family’s health – which she knows from experience can be difficult.
Even today, while she couldn’t be more thankful for the specialists who helped Damian in those early hours after his injury, she can no longer remember their names.
“If I look back now and think about the night Damian had his operation, I can’t even remember the surgeon’s name. I was just so wrapped up in emotion. Hundreds and hundreds of providers over those years,” she says. “But with My Health Record I can just open my computer and check it. It’s there.”
Now that she’s moved to My Health Record, what does this mean for her trusty folder full of paper health records? “I can’t wait to get rid of that folder. I’m going to make confetti out of it.”