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MSWA Bulletin Magazine Autumn 2021

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Get to know your new President | Resilience: I get knocked down, but I get up again | MSWA’s m contribution to research | 36 years of Bulletin

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MSWA CLIENT REBUILDING YOUR LIFE FROM THE GROUND UP

To any young person living with an acquired brain injury, Rebecca Carbone says, “It’s possible to rebuild your life from the ground up, like I did”. Rebecca is passionate about improving the rehabilitation experience of young people, something she says requires both personal grit and determination, as well as surrounding yourself with people who understand that an injured brain can do remarkable things to reorganise itself, when given the right therapy. It was February 2014 when Rebecca realised something was wrong. She was working 50-60 hours per week in the oil and gas industry and suddenly became unwell. Thinking it was a flare up of the chronic fatigue syndrome she had been diagnosed with in 2013, she reluctantly took three months off work. However, three weeks after her 30th birthday, while getting ready to meet a friend for coffee, Rebecca felt an overwhelming urge to lie down. Once she did, she couldn’t move. Her body began to tremble. “I was scared,” recalls Rebecca. “I thought – am I having a seizure?” Health Direct told her to go straight to her local ER, who unfortunately sent her away. “They told my parents I presented like a young person who was coming off drugs and advised them to look at rehab for me. Thankfully, my parents didn’t believe this. “My head hurt for days afterwards. My GP, who knows me well, was concerned. He booked me in for an MRI ‘just in case’.” Reassured, Rebecca prepared to attend her best friend Nelly’s engagement party. But again, she lay down and started shaking. Her speech was slurred and she couldn’t attend the celebration. It was Nelly who took her to the MRI appointment days later. Rebecca remembers how the radiology staff were the same age as her, and that they had a joke and a laugh when she went in. “But when I came out, they seemed suddenly serious,” recalls Rebecca. The next day, she should have been wedding dress shopping with Nelly, but her GP called and requested she come in to the surgery. “I knew what that call was,” says Rebecca. Her GP was straight-faced. “They’ve found something,” he said. “You’ve got a brain tumour.” Rebecca immediately asked about her prognosis. “Rebecca, it’s up to you,’ said her GP. “If you want to live, you’ll fight. If you decide you want to die, you may as well give up right now.” Rebecca told him she wanted to live. THE NEUROSURGERY “My parents were inconsolable,” Rebecca recalls. “But my GP told them to keep me happy and calm, to keep me strong for the neurosurgery. “I phoned my best friend to ask if she’d found her dress. She had. And then I told her I had a brain tumour. She was devastated, then we joked that I was showing her up!” laughs Rebecca. At Murdoch Hospital, Rebecca went for a second MRI to confirm if the symptoms she had been experiencing were a result of seizures or strokes. “I was bleeding from a tennis-ball-sized brain tumour. I’d been having strokes.” The week running up to the surgery was emotional. Nelly asked Rebecca to be a bridesmaid at her wedding. However, Rebecca was convinced she was going to die. “I wrote out a list of who should looks after my dogs and cats, who would have my stuff. I saw friends, made amends, tied up loose ends.” On the morning of the surgery, her parents were right by her side. “They walked me down to theatre – right in. That was when it really hit me that they weren’t expecting me to come out.” Initially, it seemed the surgery to remove the tumour went well. Rebecca woke and was very responsive. Unfortunately, at 6am the next morning, she was rushed to emergency surgery. Rebecca has no memory of the following month, which was spent in ICU. She couldn’t see, move or speak, and she was struggling to breathe. Her doctors held a meeting with her family. “They told my parents that I needed to be moved into a care home. That I was never going to recover. That I would never function independently again. “Apparently, my dad – who is usually quite gentle – stood up in anger and stormed out of the room, declaring, ‘You don’t know my daughter!’” THE ROAD TO REHABILITATION After some negotiation, the State Head Injury Unit admitted Rebecca as a rehabilitation patient. It was around this time that Rebecca’s memories begin again. She recalls her GP visiting and him explaining to her, “Rebecca, you had a massive stroke.” Rebecca found her stay at rehab harrowing. “I had to relearn everything – all my gross motor skills. I still couldn’t see and I was very photophobic. I cried myself to sleep most nights.” continued over > 21

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