Jimmy Barnes and daughter Elly-May on living with cerebral palsy
Elly-May Barnes may have grown up in a household that most people would expect to be anything but normal – especially as Australian rock legend Jimmy is her dad – but ‘normal’ is exactly the environment her parents strived for as they cared for and raised a daughter learning to live with cerebral palsy.
Elly-May was born premature at 20 weeks and suffered a brain bleed on the left side, which affected the right side of her body, although both sides of her body experience spasms.
“Cerebral palsy is a physical disability. Mine affects mainly my right side, but also my left leg – it involves spasms and the brain signal gets mixed up. So what my brain wants me to do, does not translate to most of my limbs, which is always fun,” she says.
The 32-year-old singer and mother to six-year-old Dylan has endured chronic pain since an early age, however, the care and love of her family – and the happiness she has harnessed through music – are allowing her to live her life bravely, passionately and joyfully.
Elly-May weighed just 750 grams when she was born and, Jimmy says, it was “purely through the skill and will” of the medical team at Westmead Hospital’s Intensive Care Unit that she survived.
“We used to bath her in a kidney dish she was that small.”
Cerebral palsy was diagnosed when Elly-May was two and not reaching certain milestones. The family didn’t know much about the disability but ongoing tests ascertained her physical limitations and provided more information about its effects on her body.
“Our job as parents was just to try to take as much pressure off Elly. We didn’t treat her differently to the rest of the family,” Jimmy says.
Elly-May – who went to school like her siblings – could move around the home “fairly easily” because the spasms in her body had gaps which allowed her to walk and lean on things with her hands.
She says, “I fell down the stairs a few times.”
“She was a bit clumsy,” Jimmy adds. Throughout her life she has had time frames of up to three months with a cast on one or both legs.
“But, she was one of those kids who was incredibly happy all the time and didn’t let on that anything was wrong. Even in the in the early days – because we normalise things so much – Elly didn’t know things were that wrong.”
Jimmy says Elly-May’s siblings “sort of forgot” their sister had cerebral palsy – it was important to all of them as they cared for Elly-May that she experienced a regular life as much as possible.
Pain and progress
Elly-May deals with continual discomfort and soreness caused by the way her bones sit together. She experiences nerve pain, back pain and pain stemming from previous operations.
“I’ve had a lot of injuries along the way, but I’m basically in a constant state of pain, and I have different kinds of pain… pain from spasms, from arthritis, from the way I’m sitting, standing or walking.”
One of Elly’s doctors described her pain as being similar to running a marathon every day. As the muscles release lactic acid, “it’s just agony from that alone”, Jimmy says.
Currently Elly-May is continuing to recover from a major operation earlier this year which extended the tendons in both of her legs and calf muscles with the aim of improving her balance and ability to walk.
She’s using a wheelchair and LEM mobility scooter, and is preparing to incorporate physiotherapy into her rehabilitation when possible, with a program focused on relearning to walk and strengthening deteriorating muscles.
“It’s quite a daunting prognosis, but we’re just going to play it day by day,” Jimmy says.
Elly agrees. “I’m sort of used to random setbacks – I should remember this is huge. This is bigger than anything I’ve done before.”
Jimmy says it’s crucial to acknowledge how the post-operation rehabilitation process affects Elly-May’s mental and emotional health.
So, while collaborating with specialists for physiotherapy and doctor’s appointments, Elly-May prioritises her mental health by embracing a holistic approach of complementing her medication with yoga, meditation and CBDs.
Emotional, musical expressions
A significant healer and stress reliever has been Elly-May’s passion for music which has been a “huge part” of helping her live with “the harder parts” of cerebral palsy.
Jimmy says, “Elly has been singing with my band for years. Over the last few shows, before Elly had the surgery, she was getting on stage and halfway through she would be in tears and carried off because she was in so much pain.
“We all knew something had to change… and that’s what led her to this surgery – this treatment.”
Jimmy says music is Elly-May’s way of emotionally expressing her pain and fear.
He says a recent show theme was ‘walking’ and he recalls his daughter saying, “I love singing songs about walking because I can’t walk.”
“And it’s like tearing my heart out watching it, but I knew that it was Elly making fun of the thing that was most painful to her, in the way she’s always done.
“I think music is therapy as well, so as much as it’s great expression, and she’s really good at what she does.”
While supporting Elly-May with her performances, Jimmy noticed a lack of access for people with a disability in many venues.
“Especially backstage. You get lifted up and carried into fire escape stairs and into dressing rooms with narrow doors.
“I think even new theatres are built where they might have one ramp somewhere, but they don’t have accessibility.”
He says it’s difficult for a person with a disability to access a bathroom, the stage, or move around a venue.
“As much as we all like to think we’re on board with caring and equality for disabilities, I think it’s pushed to the wayside when it comes to a budget.
“It’s a human rights issue. It’s about equality. It’s just about everybody thinking and caring and being decent human beings.”
Jimmy is advocating for thorough legislation to ensure wheelchair access is provided “in the back doors, in the front doors, the fire exits, in the bathrooms, and in the venue everywhere it’s not”.
“You legislate that then the attitudes themselves come from everybody standing up and saying, ‘Hey, we expect to be treated and to treat people the way we like to be treated ourselves.’”
Circles of care
While Elly-May knows what it’s like to have others care for and support her, she is now in the role herself of raising Dylan – a son she’s proud to say has learnt the value of considering the needs of others.
Elly-May’s pregnancy with Dylan was treated as high-risk. “But my baby was fine … he was healthy. But I was always scared that my body would be too stressful an environment to kind of house him.”
Now, she says, Dylan is growing into a “beautiful, compassionate young man” because he’s “really aware”.
“It’s a different stage of my life where I am struggling a bit more physically, and he is always wanting to help. He’s caring. The principal says he’s the kid who always helps anyone who’s fallen over. If a kid’s upset, he’s always there caring. He wants to help people.”
Boldly stepping forward
Jimmy says his daughter has “always been bold”. “She’s not afraid to have a go and just step forward – sometimes wobble forward – but she’s always charging into things and willing to make the effort and be positive.”
Elly-May attributes her fearless demeanour to coming “from a family of bold people”.
“Growing bold is being radically accepting of who you are and your limitations and yet being open to trying anything. And, I think, being bold is also being able to laugh,” she says.