Real Life

Elly-May Barnes shares her personal health battle: “So long as I’m alive, I’m grateful”

Having faced her own near-death experience, lived with chronic pain through cerebral palsy, and watched her rocker father, Jimmy, confront his mortality more than once, Elly-May Barnes is no longer hiding her light. At 34, she’s releasing her first album and shining bright.

Elly-May Barnes is picking tomatoes from her backyard veggie patch. She’s wearing a white broderie anglaise and tulle mini dress and silver lurex boots – not your standard gardening attire. But Elly-May is not your standard woman. Everyone who knows her says she’s something special. She always has been.

“I’ve never done things in a small way. I mean, I was born and nearly died,” she says, and she laughs. The 34-year-old singer/songwriter has a wicked, dark sense of humour, but at the time – born 14 weeks premature, the youngest of Australian rock royalty Jimmy and Jane Barnes’ four children – Elly-May’s life hung in the balance. It was no laughing matter.

“It was probably the most difficult time in my life,” Jane told The Weekly in 2021. “When something like that happens, which is beyond your control, when your child might die…They would take her bloods every two hours, she had cannulas all through her body. They said to us there was a 50 per cent chance of this baby surviving. Anything else you’ve been through in your life is…It really puts life in perspective.”

Jane and Jimmy stayed with Elly-May day and night. Sometimes Jimmy slept on the floor beside her humidicrib.

“They saved my life,” Elly-May says now. “They were there from the beginning, making sure I stayed alive in that hospital, and every time I’ve been in hospital since. I wouldn’t be here today without them.”

Elly-May as a newborn baby being held by mother Jane.
Elly-May with her mum, Jane. (Photo: Supplied)

Jimmy and Jane finally brought their tiny girl home, but Elly-May wasn’t out of the woods yet. At three years old, she was diagnosed with cerebral palsy, which is a lifelong disability that can affect, among other things, body movement, muscle control and coordination, reflexes, posture and balance. It also can – and does in Elly-May’s case – cause chronic pain.

At The Weekly’s photo shoot, Elly-May has been a dynamo – trying on multiple pairs of rhinestone cowboy boots, slipping in and out of frocks, striding up and down hills, fording muddy garden beds. But after the photographer calls a wrap, she appears to be in some pain and takes a minute to gather herself before we begin the interview. Elly-May has lived with this pain for as long as she can remember.

“I’ve had medical procedures since I was a baby,” she explains 15 minutes later, back in her sunny lounge room with a smile and a glass of cool water. “I’ve always had to be stretching my calves, doing physio; I’ve had injections to paralyse my muscles and all sorts of things. I had my first operation when I was pretty young. So it’s always been uncomfortable and painful, but I still felt pretty happy and lucky my whole childhood. I feel like I’ve always had this level of – I don’t know if I want to call it delusion – but I’ve always been in this little bubble. I’ve felt happy, knowing I have this great family and this great life, even though I’ve had chronic pain.”

Elly-May with her dad, Jimmy Barnes. (Photo: Supplied)

Early memories include trying to keep up with her three older siblings – Mahalia, Eliza-Jane and Jackie – whom she adored.

“I wanted to follow them everywhere and do everything they were doing,” she remembers. “I thought they were the coolest people in the world.”

No one ever told her she couldn’t keep up. “My family never made me feel different. So, even though having a disability is a major thing, it’s never really felt that major. I mean, it has sometimes but they’ve tried to make it not feel that way for me…I think that’s come a lot from Mumma. Just from her generous heart. There is nobody like my mumma in the world. She’s fierce, she’s beautiful, she holds everyone together.”

Elly-May says she was never made to feel different by her family. (Photo: Supplied)

Elly-May and Jane are close. And she and her father are twin stars. “We’re similar in a lot of ways,” she admits, including sometimes not knowing when too much is enough.

The day we meet, Jimmy looks fighting fit, though he’s still taking it easy after a bout of bacterial pneumonia led to a staph infection that spread to his back and his heart, requiring open heart surgery in December last year.

The family put on a brave face at the time, but Jimmy’s life was in jeopardy. The infection spread quickly and the doctors battled to find it. There were times when Jimmy told Jane he wasn’t sure he would make it. Jane admits she was worried, and so was Elly-May. “He’s my dad,” she says. “If he’s not okay, I’m not okay, and vice versa.”

Her cerebral palsy diagnosis came as a young child. (Photo: Supplied)

As a kid, Elly-May remembers listening to her father sing – the whole family often went on the road with Jimmy – and she wanted to be a singer, too.

“I was furious, at five, that I didn’t sound like Michael Jackson,” she laughs. “I used to listen to his CD on repeat and sing along. If I got the song wrong, I would start it again. If I got the song wrong twice, I would start the album again. I was like, ‘you can’t dance, so you’ve got to get the singing right’. I wore that CD out.

“But I also loved Silverchair, I loved drag queens, Whitney Houston, Dolly Parton. I liked Elvis – 1956 to ’68 Elvis, to be clear. I just loved music.”

Jimmy and Elly-May share a special bond. (Photo: Alana Landsberry)

Growing up, the family lived in Bowral, Double Bay, and Aix-en-Provence in France, so Elly-May was used to road-testing new schools. In Year 11, she was languishing at Kambala, a private girls’ school in Sydney’s east, when life delivered her an adventure she couldn’t refuse.

“It’s kind of complicated … I had a boyfriend,” she begins. Elly-May was dating Elroy Finn, son of Crowded House frontman Neil Finn and his wife, Sharon. “And I was at Kambala and not loving it there. I was doing well but my health wasn’t amazing and my head was a bit all over the place with the medication.

“Anyway, there was this girl at the school who was so smart and interesting. She was like my best friend and she suddenly just said, ‘Oh, I got into this school in Wales, and I’m going.’ It was this weird, Harry Potter kind of UN-style international school called Atlantic College.”

The idea appealed to Elly-May, and within months, she, Elroy and her school friend were all winging their way to the UK for their final years of high school. The school Elly-May chose was called Stowe, in Buckinghamshire.

“It was incredible,” she says and her eyes light up, even now. “The Beatles played there in 1963. Christopher Robin went there. It was on 800 acres. I got to do advanced English, early modern history and classical civilisations. I was thriving, topping my class. I put on a concert at that hall where the Beatles had performed, and Dad and Neil played and we raised £10,000 for a cerebral palsy charity … I loved that school.”

Elly-May flew home, however, just short of completing her final year. The cold played havoc with her muscles, and 800 acres was about 790 too many for a teen with cerebral palsy to navigate. “I didn’t think that through,” she says. “And then Dad had his first open heart surgery, and it felt just too far away.”

She hopes to inspire others with a disability to dream big. (Photo: Alana Landsberry)

Back in Australia, Jimmy rallied post-surgery, as is his way, and Elly-May joined him on the road.

“She’s got this classic rock voice,” says her uncle Mark Lizotte (the guitarist Diesel), “that people would kill for. When she gets up there and really starts giving it, it stops you in your tracks. It’s easy to say she’s got her father’s genes, but she’s got a voice of her own. It’s a great female rock voice … it’s got this swagger to it.”

It wasn’t always easy – the long hours standing on a riser at the back of the stage, the late nights, the festivals and clubs and theatres that weren’t easily negotiated by someone with a disability – but she loved it.

“Music is the ultimate therapy,” Elly-May says. “You can get into a real meditative space. Singing, performing and losing yourself in music, it releases certain chemicals. You can get into that space where you just feel it and let it go. I think, holding onto things, that’s when you get sick, that’s when you can’t cope. You’ve got to let it out or make something pretty out of it.

“There’s a line in a Bob Dylan song: ‘Behind every beautiful thing, there’s been some kind of pain’. I think that’s true.”

Elly-May would tour despite her pain. (Photo: Supplied)

Elly-May was 24, still singing with her father’s band, living in inner-city Sydney – the rock‘n’roll life – when she missed a period, and she knew she was pregnant.

“It was a surprise,” she admits, “but a happy surprise for sure. The best surprise ever. My son, Dylan … he definitely saved my life. He came at a time when I needed to treat myself a little nicer. He helped me to look after myself and value myself more. And now, Dylan is the best person in my life.”

From the moment she knew she was pregnant, Elly-May decided her body was a temple. She ate well, she got enough sleep, she used “mind over matter” to quell her anxiety.

“I was thinking that my body was a fairly hostile environment to have to live in,” she explains, “and I wanted him to have every chance of being okay.”

Elly-May posing with mum and dad while pregnant with Dylan. (Photo: Supplied)

There were challenges. She had Braxton Hicks contractions throughout the pregnancy and her heart rate was sometimes frighteningly high, “but we monitored him and he was fine. He was just chilling in there,” she says happily. “In the end, they decided to take him out a few weeks early, but he was three and a half kilos – a big boy – and perfectly healthy.

“I learnt from that experience that I was a bit stronger than I thought I was. And that maybe I was capable of a little bit more than I thought.

“I’d been scared I couldn’t do it. There’s no information about what pregnancy looks like for disabled people, so you’re just learning on the go. But I guess that’s pregnancy in general, because every pregnancy and person and child is different. And I think that’s parenting, too.” Which in Elly-May’s case has been largely single parenting.

Jane says she is full of admiration for her daughter’s artistic work and her advocacy in the disability space, but ultimately “I’m most proud of Elly-May for being a terrific mother”.

“I want to show Dylan that anything is possible.” (Photo: Alana Landsberry)

Today Dylan, aged 10, is tearing down the drive on his bike, kicking up dust as he executes a perfect skid-to-stop beside his mum. He grins and gives her an affectionate hug.

“He’s the sweetest, funniest little goofball,” she says. “He’s my little buddy … I do everything I do because of him. I think part of the reason I push myself to do all the things I love is to show him that’s what he could do – pursue things he loves and be excited about the world. I just want him to see that, even if maybe his mum might be a bit different, it doesn’t mean anything because different is okay. I want to show him that anything is possible.”

Some of the things Elly-May loves are cabaret, dressing up and objects that sparkle and shine. A dressmaker’s mannequin stands by the piano in the lounge room. It’s decorated with fairy lights, tulle, silk, cut glass and crystal from an old chandelier. Nearby is a glass-top coffee table that encases a collection of treasured Bob Dylan LPs. Elly-May is eclectic – she has something of the musical and aesthetic bowerbird about her – which set her up perfectly for her next career move.

“I have this great life, even though I’ve has chronic pain.” (Photo: Alana Landsberry)

It was 2018. A friend of Elly-May’s had booked a gig at a little cabaret venue in Darlinghurst. When she called in sick, she asked Elly-May to step in.

“I was like, ‘Sure, I can do a cabaret’,” she said, all bravado. “Then I Googled what cabaret was. It said the audience has to be sitting at a table, and otherwise it can be just about anything. I’d only ever done solo shows I didn’t tell anyone about because I didn’t like people to come, and I didn’t charge anyone. But this one was like, people had to pay money and get a three-course meal, so I was really stressed. Then I dislocated my shoulder and I was in a sling, but I bedazzled my sling and asked my friend Clayton Doley [a Hammond Organ virtuoso] to play with me, and I sang some Patsy Cline, and it was fun actually. It escalated from there.”

It truly did. Do yourself a favour: Visit Elly-May’s YouTube page and watch her three-year-old performance of David Bowie’s Moonage Daydream. It’s a revelation. By then, she’d added a light-up cape to her act, a platinum blonde wig and a profusion of fairy lights.

“Now we have clam shells, smoke machines, confetti cannons, pyrotechnics, which are sparklers,” she giggles. “Once we did the capes I was like ‘Okay, I’ve got a vision of how much this is going to get out of hand.’ And that gave me confidence as a front person, because I was nervous to perform, but to have a wig and a character … I drink apple juice and pretend it’s whisky and think, ‘Oh well, they think I’m a drunk showgirl, so it’s not me. It’s fine’.”

Elly-May Barnes performing live on stage.
Elly-May has found a new confidence with her cabaret show. (Photo: Supplied)

Elly-May is releasing her first album, No Good, next month. It’s largely original material, co-written with an extraordinary cast of characters including her Uncle Mark, Neil Finn, Cold Chisel pianist Don Walker, and acclaimed singer/songwriter Shane Nicholson, among others. She plans to put a band together and play some rock shows, but “I’ll keep doing the cabaret because I feel like it’s good for my mental health,” she adds.

Both the cabaret and what Mark describes as “all the diverse facets of the album” were born of Elly-May finding the courage to be herself.

“It was giving myself permission to express more than one aspect of myself,” she explains, “allowing myself to be several things. Because we are all many things. The real me includes the dark bit, the angry bit, the sad bit, the funny bit, the bit that is going to propose to Bob Dylan weirdly through song.”

The last track on her album, which is as clever and quirky and poignant as Elly-May herself, is a love song to the 82-year-old Nobel Laureate. Others might have written a fan letter to Bob Dylan, “I like to express things in a bigger way,” she says. “I always have. I think that’s the nature of who I am, and it feels good to let that out.”

The shoot was styled by Lilly Veitch. (Photo: Alana Landsberry)

Asked what he thinks of the album, Jimmy tells The Weekly: “Like any father, I’m of course very proud of my girl. The fact Elly-May has had to overcome so many obstacles relating to her disability along this journey makes me even more amazed and proud. When she played the record to me, I was stunned. Her record is exceptional. I don’t know why I was surprised; she has always been talented and very creative … Elly-May wanted to do it on her own, her own way, and I think she shines so bright.” 

Elly-May is shining bright for herself, of course, and for Dylan and her family, but also, she says, “to show other people that there isn’t this one mould of what a disabled person looks like. Or what any person looks like or can be.”

And while she still suffers from stage fright, Elly-May has come into herself in a dazzling, strong way, as an artist and as a woman.

“The difference,” she says finally, “is confidence and allowing yourself to be. And not caring, I suppose, whether other people accept that or not.” AWW

No Good by Elly-May Barnes is available from April 12 through ABC Music.

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