GROWING BOLD AND CARERS

Growing Bold and Carers

Pete: Welcome to the Grow Bold with Disability Podcast. Brought to you by Feros Care. A podcast dedicated to smashing stereotypes and talking about the things people with disability, care about most, to help us live bolder, healthier, better-connected lives. I’m journalist Pete Tims

Tristram: and I’m Tristram Peters. I work for disability service directory, clickability, and I’m a wheelchair user living with spinal muscular atrophy.

Pete: Today’s episode of Grow Bold with disability, is growing bold and carers, and our guests today are Elly-May Barnes, an amazing singer and mother of a wonderful young son, Dillan, who lives with cerebral palsy, and her father, who some of you may have heard of, maybe not, I guess the majority would have – Aussie rock legend Jimmy Barnes. Now, in this episode, we’ll discover how Elly-May got cerebral palsy, how it affected the Barnes family and how she’s grown into an amazing singer and, a mum. Elly-May and Jimmy welcome to grow bold with disability.

Jimmy: Hey, how are you guys?

Pete: Fantastic.

Tristram: Really well, (sings: hello) Well I’m not a good singer so we’ll have to work on that on my part. But anyway.

Jimmy: Oh right then, no problem.

Tristram: I love it, so Elly-May let’s start with you. Do you mind explaining to us what is cerebral palsy?

Elly-May: So it’s basically it’s a physical, physical disability. So mine affects mainly my right side, but also my left leg and involves spasms and, like the brain signal, kinda gets mixed up. So what my brain wants me to do, it does not translate to most of my limbs, which is always fun.

Jimmy: It’s something new every day.

Elly-May: Yes

Jimmy: I think it happened in Elly-May, she was born very premature. She was born at 20 weeks, so 14 weeks premature and she had some sort of brain bleed in the

Elly-May: on my the left side

Jimmy: On the left side which affected the whole right side. And so now both sides spasm because Elly-May has been compensating with the left side so much the right side wasn’t getting the signals that both sides spasm. And consequently, she’s, you know, lived with chronic pain for most of her life poor little thing.

Pete: So Jimmy, you said she was prematurely born. I think it was four weeks premature.

Jimmy: 14.

Pete: 14, sorry. What was the diagnosis from the doctors at that time? What did they tell you? Jimmy: There was nothing we really didn’t know a lot about at the time. It was just working day to day just trying to keep Elly alive. I mean, literally, she weighed 750 grammes.

Pete: Wow

Jimmy: We used to bath her in a kidney dish she was that small and it was, you know, 1300 yeah?

Elly-May: Yeah 32 years ago.

Jimmy: 32 years ago and you know, and obviously technology has changed a lot in the last 32 years, but back then, you know, it was it was purely through the skill and the will of the of the doctors and the nurses at the West Mead, neonatal intensive care that kept her alive And, you know, and in that process, you know, the babies are intubated and they’re getting oxygen and all this sort of stuff. And that’s always a fine balance of, you know, of, of getting the right amount of oxygen in the blood and all that sort of stuff. Not too much. So we don’t know exactly when or where, but in that process, sometime Elly-May had a brain bleed, and we didn’t know for sure.

Elly-May: I think with cerebral palsy, you can’t normally diagnose it until you don’t start hitting certain milestones as far as movement those falling and and then obviously walking is not, um, my strong point, either. So I think when I hit probably around two or so,

Jimmy: Yeah, Yeah, it became more apparent

Elly-May: It became more apparent as I moved more differently

Jimmy: And then it was just a matter of, you know, they went and did more tests to see how much, you know what limitations Elly would have with her movement and what it had actually affected. That became more apparent as she got older. And our job, really as parents was just to try to take as much pressure off Elly so that, you know, so that she, you know, you know, we literally actually grew up. We didn’t really We didn’t We didn’t treat Elly-May differently to the rest of the family and she just you know, she was just the one that couldn’t run and all that sort of stuff. But she was just, you know, we just made it as easy and as, you know, normal as possible for her. So, it wasn’t It didn’t really affect that much until she got to get older really.

Pete: So what sort of adjustments did you make around the home? Was there anything in particular that was just a little bit different?

Elly: Well, I mean, growing up, I could get around fairly so easily like the spasms would have, um, you know, gaps in them, at which point I could walk and mostly, I’ve always kind of lent on things with my hands. I haven’t particularly used the walking stick or anything.

Jimmy: She’s always been a bit clumsy, but she was just right. Now there were the odds there, here and there. And she just ran around.

Elly: I fell down the stairs a few times

Jimmy: She’s was a bit clumsy

Pete: I have too (laughing)

Elly: I never really, It never really bothered me. Things being slightly more difficult. I was just sort of like, happy to be.

Jimmy: There was all the way through her life, though, there were these periods where she had three months had a cast on one leg or both legs. So then she would be sort of hobbling around. She was incredibly one of those kids who were just incredibly happy all the time and didn’t let on that anything was wrong. And I think even in the in the early days, because we normalise things so much Elly didn’t really know that things were that wrong, you know?

Elly: Yea

And she went to school as normal. She didn’t, she couldn’t, Sports day wasn’t a big day for her.

Elly: Well I did compete in year two, but I believe I came came last. But I had two casts on., and I’m mysteriously got a running trophy, at the sports day and we went out to celebrate it for lunch, with Catalina and we celebrated. But, um, I didn’t find out till I was in my teens because I was always, like, that’s kind of weird. Like, nobody else got a trophy and I lost. So then I found our when I was 15, dad had given it to my teacher to give me.

Jimmy: Yea, we used to do that with all the kids, because, you know they weren’t particularly good at sport anyway.

Elly: So I had delusions of grandeur (laughs), for a very long time.

Jimmy: Probably about a week there she had, you know, she thought she was going to become a sprinter.

Pete: (Laughs) Now, you did mention, pain. Tell us about that because you have had a lot of issues with your pain, haven’t you?

Elly: Yeah. Yeah. So I just seen in the sense that sort of as I’m getting older the way that I moved um, it is obviously mechanically messing with how my bones sit and all of that kind of stuff. And so there’s a lot of nerve pain and some damage for previous operations, like we had matching back pain.

Jimmy: Yeah, I got mine from 65 years of being a laraghcon, you know.

Elly: Yea I barely moved at all, like.

Jimmy: I deserved mine, (laugh) I really did.

Elly: So it’s just like I feel like a lot of older problems.

Jimmy: Elly’s legs turn in, and that affected the hips, which affect the back and affect the whole body.

Elly: It’s the whole body and then, like I have one remaining limb the poor thing. And it’s like so they’re all here, It’s just this one listens to me. So you know, this whole side, and its taken on so much. 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, pain from arthritis, pain from like the way that I’m sitting or standing or walking or caring.

Jimmy: Because Elly-May’s muscles, for instance, even the first birthday in the math was spasming because, of course, the muscles will spasm all the time. One of the doctors at the West Mead, at the rehab Centre said it was ‘Imagine if you ran a marathon every day. It’s your muscles. It’s letting out that much lactic acid. It’s just agony from that alone, just muscular.

Elly: There’s so much inflammation.

Jimmy: And then and then that affected it a bit much.

Elly: Yeah, so it’s all trying a balancing, act – Not really, I can’t balance. But there’s always things you have to do to intervene. Like I don’t like strong painkillers. Um, I had to take them a lot through my teens and mental health wise, that’s probably what affected me more than, um, the condition itself, because I’m okay with being a bit different or having to do things a little differently. Although it has, as I’ve gotten older, it’s gotten harder because obviously so you know, it’s wear and tear on the body. But yeah, I don’t know.

Jimmy: Yeah, but you know, Elly was incredible as a child, even though. Because she did have different surgeries and things to extend the tendons and extend the muscles. So there was some serious surgeries, and Elly was like this trooper who just, you know. And so even then her brothers and sisters, they didn’t treat her any different because she just acted like nothing was wrong and just kept like a real trooper. And it got to the point where, you know, we’ve been doing compensating for Elly, and the other kids are going, you know, she’s fine. What are you talking about? And they sort of forgotten that she had cerebral palsy, whereas, you know, she was struggling with it most of, all of her life. And as she’s got older, those conditions are getting harder to deal with and they compound and become more, um, you know. And it is a juggling act, really, just sort of to keep things, you know, you fix one thing and something else plays up. You work on this thing, and, uh, so at the moment, we’re trying some quite radical stuff. Elly’s had both let tendons extended, both calf muscles extended, trying to open up, so it can open up the hips and stop the back and maybe give us some more, better balance and be able to walk,

Elly: For longer, long term

Jimmy: Yea extension on it.

Pete: Yeah, So how’s that going?

Elly: Well, I don’t think, I have this thing with doctors, sometimes we’re all here and it’s one thing. And if it sounds a bit scary or kind of like, Okay, that’s what I’m thinking about my tune up for the rest of it. So I didn’t quite realise… the recovery time.

Jimmy: Elly-May. Elly-May had this surgery, and the day after she said, “Come and pick me up, we’re all good. The doctor said I can leave.” I said “really? This is major surgery” She said “No, no” So we brought her home and Elly couldn’t move at all, when she was in the wheelchair, and she couldn’t even get into the wheelchair, alright, the wheelchair, it was impossible. And we’re saying, “Are you sure the doctor said”. And then we looked at the list of painkillers she was on it and it was enough to sort of stop a small herd of elephants. And I’m going really Elly I don’t know if you should be out of hospital, and she said, “Yeah, yeah, yeah, the doctor told me I could” But we rang the hospital and the doctor said that they wanted her in for three months. And so we drove her back up to Sydney and she went back in hospital for a month after?

Elly: 5 weeks, oh no 6 weeks

Jimmy: More then month and a half where I come from.

Elly: Yeah there was those two weeks at the..

Jimmy: Yea a month and a half. And the problem is though

Elly: I got kicked out (laughs)

Jimmy: (laughs) Yea and the problem is, the problem is after a month and a half, you know, they’re saying, they started doing some physio and stuff like that, but then the, you know the thing that they’re fixing, which is supposed to be doing physio to stretch of calves and stuff like that was fine, but the tendons in the ankle were giving. So she couldn’t, so now she’s back in the wheelchair and she can’t do the physio. And so this is a sort of much..

Elly: That’s me being stubborn though because they tell you things like what you can tolerate and now, I can actually tolerate, like, a lot, but apparently what my body can tolerate is less what I can but because my coping experience, like my dad said, I’ve always been happy and like nothing’s the matter.

Jimmy: I’m just going to get out of the wheelchair and pick up this kid’s toy from the from the floor and falls a bit candid again, so it sets you back three months

Elly: Like yeah, I can show myself to the hospital and then like okay

Jimmy: Well its flipped over. And so she’s really she’s been having a lot of problems. It’s for this operation, which probably was, she thought was going to take a day to recover and then, we thought, might take three months. It’s probably gonna take more than 12 months to recover.

Pete: Oh wow

Jimmy: And then there’ll be the physio of relearning how to walk properly and balance and strengthening muscles to go with it afterwards,

Elly: So then I have no muscles.

Jimmy: It’s quite, It’s quite a daunting prognosis, but we’re just we’re just going to play it day by day, really.

Tristian: How do you deal with that frustration Elly-May? Is it just business as usual. It’s just normal life?

Elly: I’m sort of used to random set backs, like I should remember this is huge. This is bigger than anything I’ve done before. I should have remembered that my body really doesn’t recover well from anything. Um, but yeah, so now I mean, like, I was lucky enough to find a good chair that’s a bit more narrow than the one I was trying to get around in

Jimmy: It’s lighter. Elly: at the hospital. It’s lighter.

Jimmy: We’ve got a really good mobility, a vehicle It’s called a LEM.

Elly: A lemon? I don’t really know what to call it.

Jimmy:A LEM its called, its a mobility scooter but you can drive around just around between our houses now.

Elly: It looks like a ridiculous Tiny car

Jimmy: Yea like a little car. So we’re just, we’re just trying to keep her off her feet and not trying not to extend anything until. But the big, the big issue is how it affects how it affects, her uh mentally and emotionally, because it’s like I said, Elly has always been the one who charged ahead and, you know, she came out and she’s done two shows when she was left, hospital. Which she shouldn’t have done.

Elly: Yea it was a week, out of hospital

Pete: A week?

Elly: Yeah and it was two and a half long.,

Jimmy: Yea, and we said, you can’t do it and she wouldn’t cancel it. So I said, Well, you have to sit down the whole time you have to be. And of course, she stood up for the whole show and then that set her back another three months.

Elly: And then I did the day surgery. And then I did one 3 days after that, and then I popped out a giant cake.

Jimmy: And I’m just making it easier for her to go to the show and Elly-May is the first thing is there and she jumps out of a cake. I’m like – oh Elly

Elly: But I think the balance, I need that for my mental health, as well.

Pete: Yeah, fair enough

Tristan: Absolutely.

Pete: Jimmy, what sort of support did you guys get from outside from when Elly-May was young to all up through now?

Jimmy: Listen, we found the support was incredible, when Elly was under 18, particularly from the rehab centre at Westmead. Incredible doctors. Incredible follow up. Incredible Teams. But to tell you the truth, Elly you can elaborate on that. But we think that since you became an adult, you sort of get put out there and you’re on your own and you have to sort of start building your own team together. And that’s been that’s been difficult.

Elly: Were still doing that.

Jimmy: We’re still dealing with that 10 years, 12 years later, trying to deal with, you know, getting the pain management and the surgeon, and the physio and the person does the Botox to all communicate. They’re not in the same building, they’re not in the same team. There’s no one, no one overseeing the whole thing. So that’s sort of been a difficult thing.

Elly: Yeah, no one specialises in that from just what I’ve come across. You’ve got cerebral palsy. So there’s an orthopaedic surgeon and they deal with feet and ankles, but they might not deal with much specificity, so me not recovering the same way.

Jimmy: Quite often, surgeons don’t want to do surgery. It’s funny that, you know, that’s what that’s how they fix things, whereas, you know, then the physio say really last thing you should have done is that surgery. What can you tell me before? So it’s sort of seems to me that there should be someone like a management team, of all these all these functions, so they can all talk together and communicate and get the best. Because otherwise Elly, because we you know this is Elly’s life, and we’re here to help make things easier for her, but Elly chooses to do and research and find out what she wants to do. But if she gets the wrong information, then you know it’s hard. It’s happened and we’ll go “Why did you do that?” She’d say that’s what the specialist said, and then the next specialist she visits a week later said, “God, you shouldn’t have done that”. Elly: Yeah, but also, I was at the point before these operations where my tendons could like parent, fully detached, which has been a great fear of mine. And I mean this I’ve seen, whilst the recovery is extreme, I’ve already seen some benefits as far as stuff I couldn’t do before. Like I can straighten my leg which couldn’t happen because everything happened

Jimmy: But is going to be a more long term thing then what you expected

Elly: Definitely it’s of a year than a day. I may have misinterpreted that, but then again I’ve always been – yeah.

Jimmy: That’s Elly’s drag name – Misinterpreted

Elly: (Laughs) Yeah Misinterpreted

(All Laugh)

Pete: Obviously, music has been a big part of your life ever since you were young. Has that helped you as you’re growing up with mentally as well as just the physical fun part of singing?

Elly: Yeah, well I’d say, I like singing and dress ups and things like that have always been an escape and, you know, having that passion or having something to plan and look forward to is a huge part of what got me through all the harder parts of having cerebral palsy. But I try and never miss a gig. I was trying to go on tour.

Jimmy: Yeah Elly have always been singing with my band for years. Over the last few shows of what we were doing before Elly had this surgery, she was literally getting, you know, we get on stage and halfway through the show, and would be in tears and carried off the stage because it was so much pain. So we all knew something had to change, either she didn’t do the show, which, you know we wanted her to do and she really wants to do it. She’s a great singer. Or she had to find, and that’s why this lead her to this surgery, this treatment. But I think the music, you know, as much as I complain about her running out and doing a two a hour show, the music is her way of emotionally expressing pain and fear, and, you know, the cabaret show that they did in the last the last few shows. The theme for the show’s was walking, she did walk like an Egyptian, you know, walk right in, walk on by. You walk like a man. You know and she’s doing all these songs and she, you know, walking after midnight, and she’s going, I love singing songs about walking because I can’t walk. (All laugh) It was her way of sort of like, you know, people were laughing and I’m sitting and it’s like tearing my heart out watching it. But I knew that, that’s what the whole thing was. It was Elly making fun of the thing that was most painful to her, in the way she’s always done. And so I think music is like music therapy as well, so as much as it’s great expression, and she’s really good at what she does, it’s also really good therapy for her.

Elly: Yeah, definitely.

Pete: I was just going to ask Jimmy the entertainment industry – Let’s just talk about that for a second, and their attitudes towards people with disabilities. Have you seen changes over the years, accessibility to venues, all that sort of stuff? Has that changed a lot?

Jimmy: Not really. I mean, you’d be surprised. I mean, we’ve got, like, friends or rellies that come to shows, and there’s not great wheelchair access to a lot of shows, to a lot of theatres, certainly not backstage. And then you get lifted up and carried up into fire escape stairs into shitty dressing rooms with narrow doors. It’s not from an attitude of the entertainers, but it’s just the infrastructure is not there to support it. And we’ve talked about this for 20 years, you know, I remember doing 30 years, 35 years ago doing shows for Jets and John and seeing Jeff doing RSL clubs and sports clubs getting carried in his wheelchair, up four flights of stairs by, two of the roadies half dropping him and all that sort of stuff. Just so he can get on stage and tear the audience apart. The audience had no idea how much effort to get Jeff up there, let alone to perform doing his show doing wheelstands and singing, teach me how to fly it. You know, it was the people are Ahh he’s really good. They don’t realise what he went through to get there. And the travel you know, how to get in the car, how to get out of the car, the bathrooms. So I think people are, you know, Um, but what’s the right word? You know, they know they should be. You know, we all care about people with disabilities, but nobody is actually doing anything about it. I think even new theatres, even new theatres are built still, you know, they might have one ramp somewhere, but they don’t have accessibility.

And it’s always difficult to get from the dressing room to the stage or if you’re in front of house watching a band, we’ll just have to go two rows down so you can ramp up and then you can’t go anywhere. Once you get in there, you can’t get to the bathroom. You can’t get to the stage. You can’t move around the hall, Really. So I think as much as we all like to think that we’re all on board with caring and equality for disabilities, I think it’s sort of pushed to the wayside when it comes out of budget. I hate to be cruel and callus about it, but I think that’s what it is. When they’re when they’re building, they go, Nahh we don’t have to worry about that now, let’s just build and save money. Breaks my heart

Tristian: Yeah, how do we change that? How do we make access to reality?

Jimmy: I think it’s like every other, It’s a human rights issue. Its like every other several human rights issue. It takes a fight and we all have to fight for it. I mean, we’re talking about equality and women’s rights and all that. It’s about equality. Full stop. It’s not about women’s rights or black lives, its just about everybody being and thinking and caring and being decent human beings and thinking about each other and how to make that, and you know, when it comes down to the big business, building things or infrastructure or whatever it has to be legislative to say, this has to be built like this. There’s no way around it. You’re going to build a building you’ve got to have proper wheelchair access in the back doors in the front doors and the fire exits in the bathrooms in the venue everywhere it’s not. You legislate that then the attitudes themselves, that comes from just everybody standing up and saying, Hey we expected treated and to treat people the way we like to be treated ourselves.

Pete: Yeah beautiful. Actually Elly, just on people’s attitudes and so forth, now you’ve got a wonderful son, Dylan, who’s 6? Not seven yet, is he?

Elly: No

Pete: No not yet. Now, when you when you were having, was there anyone that said to you, you could, – no you couldn’t sorry, or you shouldn’t have children having cerebral palsy. Did you ever come up against that?

Elly: Um, not exactly those words, perhaps, but it was implied that it would take a huge toll on my body. It was treated as a high-risk pregnancy from the start. Like physically, I reacted a lot. Like and all the weight gain as well adding more pressure on parts of my body that were already struggling under stress. But, you know, there were people that said I wouldn’t really recover from the pregnancy and they weren’t entirely incorrect. 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.

Jimmy: But he was perfectly fine, strong.

Elly: Yeah and he was strong, three and a half kilos and like was one of the healthiest little boys I know. But I was always worried during the pregnancy, But then I tried not stress and, you know, because I didn’t want to pass that on, like my fears onto my baby, but he’s now growing into this beautiful, compassionate young man because his really aware because, 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 always, you know,

Jimmy: He’s a caring human being.

Elly: He’s caring. The principal says he’s the kid who always helps anyone who’s fallen over or does anything. If a kids upset, his always there caring, he wants to help people.

Jimmy: But it’s funny, that makes me think about you know, there’s a lot of people who have opinions about what and how to manage and how to make things better. You know, you can talk about meditation, physio, yoga. You can talk about all the things that you can do and if you put them all in, and the problem is whenever Elly does all those things it is much better. Much better for, you know, her mobility. But when she can’t do one, then maybe sometimes four or five of them will disappear. You know, they talk about pain management and much rather be having, you know, cannabinoids, CBD s and stuff. And they didn’t make that easy for people to get, you know. It really does help, mentally and physically

Elly: Oh like insanely

Jimmy: Yeah, and it’s only been the last two years have been getting it?

Elly: No not even

Jimmy: And before that was really difficult for her to get access to any of that sort of stuff. Elly: And the opioids I nearly killed

Jimmy: But the opioids were like making her suicidal, you know?

Elly: Yeah and also I was like, so skinny because I just looked like- and my tolerance kept creeping up. So by the time I stopped taking opioids and stuff, I was on like two OxyContin a day and doing morphine patches. I just was like, barely surviving. And you see I used to have to end up getting drips, my kidneys struggle. I was just, I didn’t realise that at the time, because I was just still being, you know, silly about it and whatever, but I could have died then very easily. And I was taking what I was told to take.

Jimmy: Yea and they tell her take more and No, we don’t. You’re taking so many you’ve forgotten you’re taking them. So it’s a dangerous situation. And as an adult, Elly, she lives in her own home, we can’t be there to say, Oh, you know, you’ve taken that one, you know? And so it was a worry for us. But in saying that once Elly, if we get on top of this in the next 12 months like, for instance, to get her back to starting point, I think is going to have to use the CBD, the yoga, meditation. Meditation and medication. You’re gonna have to do all the holistic, combine it all, because when that happens, you know when you add with therapy, it’s all really good. All the things everybody says said. And mental therapy, we all have to, you know, everybody in this room has to do that. Yeah, I think every human used to do that actually.

Pete: Yes

Tristian: 100%. So as we know, our podcast is called Grow Bold with disability, and we always like to ask our guests, What does growing bold mean to you?

Jimmy: You know, I think Elly- Mae’s always been bold. You know, she’s always not been afraid to have a go and just step forward, sometimes wobble forward, but always charging into things and willing to make the effort and be positive. I think being positive and being prepared to change. Being prepared to have setbacks, being prepared to have, you know, make a giant leap forward as well. But to do that, you have to be prepared to take that chance first. And that’s what that’s what Elly’s done. And being bold as a parent for me is well I’ve learned that from watching Elly-Mae.

Jimmy: Beautiful and Elly-Mae. What’s it mean for you, growing bold?

Elly: How do I follow that guy. I come from a family of bold people, I don’t know, growing bold, It’s 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.

Jimmy: And to not being told what you can’t do.

Elly: Yeah, exactly. I mean, I stood up my first try surfing, albeit on a giant board.

Jimmy: That was like two years ago.

Elly: But I can barely stand on solid ground. So you know. I think it’s being open to trying things, being open to pushing against the boundaries, because nowhere in the world is built to be physically the way that I am, and I’m just going to keep trying to fight that. And try and just be who I am and not be ashamed or anything like that. I don’t know.

Pete: Fantastic, beautiful. I love it. Absolutely love it. Well, Elly-Mae and Jimmy, thank you so much for joining us today. Here on Grow Bold with disability podcast brought to you by Feroscare. And our listeners can find out more about Elly Mae and Jimmy in our links provided in today’s show notes. Guys, thank you so much for that today. That was such a wonderful chat.

Jimmy: No problem.

Elly: Thank you.

Pete: This podcast is brought to you by Feros Care, an NDIS partner delivering local area coordination services in Queensland, South Australia and the Australian Capital Territory. Feroscare is a people care organization committed to helping people live bolder lives. We call it Growing Bold. For over 30 years, Feros has been making it real for both older Australians and those living with disability. To find out more head to www.feroscare.com.au

The content and views discussed in this podcast series are those of the individuals involved. They are not necessarily condoned by, or, are the views of Feros Care or its employees.