Episode 22

Life, literature and love unedited

Caro Llewellyn, author, advocate, and business executive, discusses her journey with multiple sclerosis (MS) in an interview on The Raw Nerve podcast. Llewellyn talks about her upbringing in a creative environment, her career in publishing and her love of books, and the challenges she faced after being diagnosed with MS in 2009.

Lewellyn also discusses her father’s experience with polio and how it influenced her own perspective on disability. She emphasises the importance of open and honest dialogue about the difficulties of living with MS. “I think the more honest we are, the more people understand about it. And…people who get MS will be able to not feel so alone.”

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Episode Transcript

Voiceover:

Welcome to The Raw Nerve, the official podcast of MS Australia, a conversation space for all things multiple sclerosis. Join us for news and views on the latest research, treatments and advocacy efforts, as well as candid and informative interviews with our community, those living with MS and their families and carers, together with leading clinicians, researchers, and advocates.

Jeremy Henderson:

Hello and welcome. My name is Jeremy Henderson. I’ll be your host on today’s episode of The Raw Nerve, MS Australia’s official podcast. Today, I’m delighted to be speaking to Caro Llewellyn, author, advocate, artistic director and Australian business executive. Caro, welcome to The Raw Nerve.

Caro Llewellyn:

Thank you so much for inviting me. It’s great to be here.

Jeremy Henderson:

Look, there’s so many things I would like to talk through about today. And just before recording this afternoon, I was thinking about where is the start of this story and how do we get into it? But before talking about your MS diagnosis in 2009, your life, it seems, has been shaped so much by a love of books, a love of literary works, and your professional experience and work in that space. And so, I wonder maybe if we could start there and maybe the impact your upbringing and your parents had on that. So, I wonder if we could start there and you could tell me a little bit about that perhaps.

Caro Llewellyn:

Sure. So, yes, you are completely right. I’ve been very lucky to have a career in literature one way or the other. I started out as a very young rookie publicist working at Random House. And that was all born, really, by my mum, who was a poet. And she went to adult matric school in Adelaide as a late bloomer to education, and went on to study at Adelaide University and became very interested in poetry and became a poet herself, and a well-recognized writer. And she was always dragging me off to Adelaide Writers’ Week and other literary events and readings at the local poetry reading place. And so, I was immersed in that world very early. My parents also owned an art gallery, so we had lots of artists around. So, it was a very creative upbringing that I had, which was such a privilege and really amazing.

And then, I just found my way to books professionally, which was wonderful. Unlike what everybody thinks about when you work for a publishing house, you don’t actually sit around reading all day. You do the work and then you read at night. But I feel like it was a privilege. I’ve met so many incredible people and had the opportunity to work with so many wonderful writers all over the world, and it’s been a beautiful journey of, I don’t know, I want to say enriching the opportunity to talk and meet with your favorite writers. For those who are listening who love reading books, and then you get to actually meet the writer and hang out with them a bit, that’s a lot of fun and a real privilege. So, I feel very lucky.

Jeremy Henderson:

And again, without getting ahead of ourselves, your MS diagnosis at one stage, and in terms of the symptoms you were having to manage and deal with, threatened to actually severely impact something you really, really loved and something you’d made a career out of. But I guess before we do that, I wonder if you could tell me about your diagnosis and how that unfolded, and what those first symptoms were and how you dealt with that.

Caro Llewellyn:

So, it was 2009, as you mentioned, and I was living in New York. I had been there for three years and I was under a lot of stress. I was working in a very stressful workplace, you might call it toxic, as well as a very stressful job, and having moved countries and all of that. So, the stress was piling on and piling on and piling on, and I started to have some strange symptoms. I couldn’t feel my little finger, and I noticed that my toe… I would be tripping a lot and I couldn’t quite work out what was going on. I had weird numbness in my legs, just came and went. And I made an appointment with my doctor. I thought, “Something’s going on.” I don’t know what it was, but I just put it all down to the stress. And I was having weird kind of flaky things come across my eyes.

And you have one or two of those kinds of symptoms, you think, “Oh, it’s nothing. It’ll pass.” And then, it all starts compounding. None of it was very extreme nor constant. So, it was like, “Oh, maybe I’m just making it up,” or… Anyway, it got bad enough. I made an appointment with my doctor and I was due to go in to see him on, I think it was the Monday morning or maybe it was a Tuesday. And I’m a big runner and I went for a run around Central Park and I just completely lost track of… I lost feeling in my legs. I felt like I was running on prosthetic legs. And I lost control of my bladder in the middle of the park, and it was awful. And I was hysterical and confused and terribly upset, and I had no idea what was going on. And so, I rang my doctor.

Jeremy Henderson:

Sorry, I thought I’d just… How did people respond when you’re in the park and you’re in that situation? Were there some kind souls in New York on that day?

Caro Llewellyn:

No, no. Well, I didn’t allow it. I ran straight into the bushes. I headed for the bush. And weirdly, in Central Park there are some pieces, particularly where I was living up in the North End, which they’re quite remote. You wouldn’t know if you point down in the middle of it that you were in the middle of Central Park. So, I made it into there and I sat on a tree until I composed myself. I wrapped my gear around my waist and walked home and put myself in a bath, and I just couldn’t understand what had gone wrong.

Anyway, so I went to the doctor and tests, test, tests. And a few days later I got a call from the neurologist who said to me… I said, “Hello.” He said, “Hello, it’s Dr. Kim.” It was like eight o’clock in the morning. He said, “Hello, it’s Dr. Kim.” I said, “Oh, hi Dr. Kim.” He said, “Pack your bags.” And I said, “What?” He said, “Pack your bags.” I said, “I don’t understand what you’re telling me.” And he said, “Pack your bags. You’ve got MS. You need to come to the hospital.” And I was like, “What?” So, that was my sledgehammer diagnosis.

And then, I had lots of tests. They couldn’t really work out what it was going on. It was unusual presentation of MS in those days. I had very little white matter lesions in my brain and only a couple in my spinal cord, so they couldn’t work out what it was. Anyway, it took a while, but I was eventually diagnosed with MS. And Jeremy, I can honestly tell you I didn’t take it very well, and I should have because my father was 95% paralyzed with polio. So, I grew up with somebody with a severe disability, and he was incredibly strong, and brave, and gracious, and amazing about his disability. And yet, when I was facing with a similar thing, I was very ungracious and not in a good place at all. So, it was hard. And I think that I felt it was just too much. I’d had him and now it was me. And I was very angry actually, which didn’t serve me at all well.

Jeremy Henderson:

In hindsight though, very reasonable to act in that way. And we often see people dealing with adversity, dealing with it very, very well. But under that kind of pressure and dealing with that kind of news, the natural reaction, I imagine, to not take it well. Let’s come back to your dad. Tell me a little bit more about your father.

Caro Llewellyn:

Yeah, he was amazing. So, he was 20 when he contracted polio. He was in the navy and he got polio, was in an iron lung for a year. And the doctor said that… And this was in the 1950s and he was in the last wave of polio. The vaccine had been introduced. But he was 19, 20 by that point, and so they thought he was immune, he wouldn’t get it because polio mainly gets younger kids. So, he didn’t get the vaccine. Anyway, he got polio. He was in the iron lung for a year, and they really did not think that he would survive, but he was a fighter. And he got out a year later and then was still in hospital for another year or so, and went on to do really amazing things.

And he always said that polio was the best thing that ever happened to him. I never really believed that as a kid. I sort of like, “Don’t be ridiculous. How can you say that?” And I understand that more now. I think that he said he would never would’ve achieved the things that he had achieved if he hadn’t had that kind of adversity to challenge him. And he was wonderful. He was a real trailblazer. I give thanks to him all the time now because there are ramps into places and there are handrails. And he was really a trailblazer for all of that back in the ’70s and ’80s. And so, our community has a lot to thank for my dear old dad.

Jeremy Henderson:

So, clearly your dad’s been very much an inspiration to you. In terms of coming to grips with that diagnosis and finding peace within that, and also, reframing that, before we talk about the memoir Diving Into Glass, how many years passed between the diagnosis and that publication?

Caro Llewellyn:

So, I got… 2009, and then the book came out in 2019.

Jeremy Henderson:

It wasn’t, I imagine, a simple adjustment in terms of living with MS. And in fact, there was a certain point there where your eyesight was impacted to such a degree that you thought maybe you wouldn’t ever be able to read again, and something that was obviously such a great love and so integral to your career to that point. That must’ve been devastating.

Caro Llewellyn:

Yeah, that was quite scary. In fact, I didn’t tell anybody that. I didn’t include that detail in the book because I needed to make sure that I could keep working. And I thought… So, my job is reading books in part. I have to read the books of the people that I’m inviting to literary festivals around the world. And the thought that I wasn’t able to do that… I had a lot of shadows in my eyes. I couldn’t concentrate. I was really struggling with that. And every time I’d sit down with a book, the words would just jumble up. And that was very scary because I knew that if I couldn’t read long-term that I wouldn’t be able to do my job. And that’s really… I was good at it, I loved it, and I didn’t know what else I’d be able to do. So, that was very scary.

And then, thankfully, that passed and I am able now again to read, which is great and a great joy, but that was a very scary moment. And as I said, I didn’t include that in the book and I didn’t even speak to my closest friends about that. And I was doing an interview with the ABC when the book came out and it just came out, I don’t know, I just said it. And I was surprised myself that I said it. But I think that it’s really important that we talk honestly about how difficult all of this is, and how scary it can be, and how threatening it can be if you think that you’re going to lose your source of income and your wellbeing and your identity as a person through your illness. So, I think it’s something that we have to, as hard as it is, to speak honestly about… I don’t love telling people that I peed my pants in Central Park, but it’s the reality.

And I think the more honest we are, the more people understand about it. And also, the more people who get MS will be able to not feel so alone. I think, back to your point about the period of me not handling it very well, if that’s the polite way to say it, I look back on that time now and I think just what a waste of a couple of years that I was just too busy being angry to just get on and enjoy my life. And we all have different stages of grief and stages of working these kinds of things out, and I was just a bit slow. But I would encourage other people to move through that quicker than I could, and get the help that I was too stubborn to ask for. It was offered, but I couldn’t even do that. So, I guess that’s one of the messages I’d like to get out today is that, to share and to not be hard on yourself and not hate yourself like I did.

Jeremy Henderson:

I think those are really great messages. Caro, so often we’re interviewing people living with MS that in spite of and despite MS, they’re doing inspiring things. But I think you’re absolutely right, it’s important. MS impacts all people differently, but it can and often is incredibly brutal. And it’s very important that we don’t sort of shy away from talking about those impacts and the very real impact it has on people.

In terms of that turning point, that moving through that grief process and reframing it and moving forward, was there a particular turning point for you that made it somehow easier to move forward?

Caro Llewellyn:

Some of it, Jeremy, I think was time. I had time to sit with myself, but I think also writing that book, and that’s why I think it took me so long. The book started, Diving Into Glass, this memoir that you mentioned, started out I was writing the story of my dad and his journey with disability because he was such a trailblazer. And I thought it was a story from a kid’s point of view, what it was like to live with a father with a severe disability like that. And I felt that that wasn’t really… And I just was so admiring of him. And so I wanted to tell his story, but also, as I say, through the lens of a small child and a growing up child, and then an adult. But then, when I got my own diagnosis, [inaudible 00:15:52], “Well, I don’t know what to do with this. How do I blend these stories?”

I was writing about him and his disability, and now I’ve got my own to contend with. But I think through the process of working through writing that book, I think that that did help me unpack it. I kept having to think… I had a wonderful editor called Sam Douglas in America, and he kept saying to me, “What’s the message that you want people to take away from this book?” And that helped me. And I thought, “I don’t want the message to be anger and grief, and all of those things. I want it to be a positive thing.” Not Pollyanna positive. I wanted to tell the real story, but I just thought the message has to be, I have to come to peace with this. So, I think the process of writing the book was part of the help and just really thinking about what happened to my father, how he dealt with it and why I was not dealing with it in the same gracious way that he did, smart way.

Jeremy Henderson:

Did your MS diagnosis and living with MS, has that changed your thoughts around disability and the way you see your dad, and the challenges that he dealt with? Do you see them any differently now as an adult and as somebody living with MS than you did as a child? Or was your dad and your dad’s disability always sort of framed as something very positive and something that was the challenge that was being overcome and supported well?

Caro Llewellyn:

I think a bit of both. I think he was so positive about it and my mum and my stepmum were so amazing about enabling him to do the things that he wanted to do, and nothing stopped him. And I found it frustrating sometimes as a kid. Yeah, I was in such awe. And it was always presented as so positive and he never complained that he never was never bitter, or, “It’s all right for you,” and those kinds of things. He just got on with it. So, he lived in South Australia at Henley Beach, right on the beach on the waterfront, beautiful place with it. And they built a deck, and he used to sit out there and watch us kids play on the beach. And we’d come up and we’d tell him all about the sea, and we’d put our hands on him and make him cold and he could smell the ocean.

And now, I find myself, I’m the one sitting up on the deck watching the kids play, and they come up to me. And so, it’s poignant. It’s very moving and I think sometimes it would be easy to slip into that, “Oh, my gosh, I wish I could be there.” And I actually can get down to the beach and I go swimming in the beach, but it’s not easy. But I just take inspiration from him. And I just think just be that happy, beautiful person that is good with all this and can sit with all of this and it’s okay. I don’t have to be down on the beach. I’ve been on the beach a lot in my life.

Jeremy Henderson:

So, we spoke before about how inspirational your father was and has been in your life. You’re now a board member on the Summer Foundation. I wonder if you can tell me just really briefly about the Summer Foundation and the work you’re doing there and why that’s important to you to be giving back in that way?

Caro Llewellyn:

Yeah, it’s very funny. If you said to me as a 30-year-old, “You’re going to be walking in your dad’s footsteps and doing work in the disability area,” I would’ve said you had rocks in your head. But it’s amazing to be able to do that and to have the opportunity. Di Winkler, who’s the founder of the Summer Foundation and the CEO, invited me to join the board of directors. And the Summer Foundation was established to get young people out of aged care facilities, young people with disability out of aged care facilities. And the statistics are… There’s been some changes recently with the new government and that’s been really positive, but there are still way too many young people who are being forced into aged care facilities. And there’s a lot of problems with hospitals, young people having to stay in hospitals well past the time that they are given the green light from their doctors to leave because there’s nowhere for them to go.

And the sad and frustrating fact is that there are actually lots of houses. There’s special disability housing that’s sitting empty because the process with the NDIS has been quite slow to date. And it has got a lot quicker and I’d like to congratulate the Summer Foundation because they did a very good public campaign about down to 10 days of getting the approval times down from the NDIS for people to be able to move into specialist housing, and that has had a big impact. And the new government’s being great at… And Bill Shorten, the minister, has done a lot to make that a better process. It’s not perfect, but it’s certainly a lot better than it was of people in hospital, I was going to say in jail, but it’s kind of like that, in hospital for up to two years after they’ve been given a medical discharge.

And then, going into aged care facilities. When you’re 20 or 30 and living with in that kind of environment, it’s awful. And people’s health outcomes are terrible. It costs the taxpayers much more money than putting them into housing that they can live independently or live with whomever they want. Why should people with a disability not have that same kind of basic human right that the rest of us have? So, it’s a great board to be on. I’m very, very lucky.

Jeremy Henderson:

That’s extraordinary. So, MS Australia has been very active campaigning for a better NDIS for people living with MS. We’re equally, as I imagine, along with the rest of the disability sector, awaiting the release of the NDIS review. How hopeful are you of seeing some fundamental and far-reaching systemic change in the disability sector off the back of this review?

Caro Llewellyn:

I think the new government is doing a lot, and I think that there’s a lot more that needs to happen. As I said, I think there’s a lot more awareness and there’s a willingness to listen more than, I think, that there was in the past. But it was also kind of disgraceful that the Royal Commission into Disability came out on the grand final weekend, and that says to me that there’s things that want to be buried. And so, I think that there’s still a long way to go. I think it’s a difficult problem. These are complex issues, and they’re not quick wins and they’re not quick fixes.

But certainly, it has changed. But I think that there is still a long way to go, as I said. But I’m hopeful and I think that there are so many good people… The changes that have been made to the people working at the NDIS on the senior levels, the executive levels is great. People actually living with disability, making those decisions and being part of that process is going to make big changes, but it’s very complicated. None of it’s that easy, but some of it is very easy actually. And some of it is about listening and problem solving and not duplicating services and common sense. There’s a lot of common sense that needs to come into the disability, fixing problems.

Jeremy Henderson:

While we’re still on that subject of navigating the world with disability, and quite literally navigating the world, I wonder if we could talk a little bit about how you travel with MS and what sort of allowances, accommodations, modifications you might need in terms of travel. Do you do a lot of travel at the moment?

Caro Llewellyn:

I have been, yes. I’ve done a bit lately. I’ve been to the States twice in the last few months. And I have to say the airlines are getting a lot better. And Qantas, I’d like to say has a long way to go. I was a very loyal Qantas flyer. I never flew anyone else, but I don’t fly them anymore because it’s not an easy process. So, the ones that are doing great are great, and I think the services have improved immensely.

And you ask for a wheelchair, and it’s there and people pick you up. And there’s a sensitivity and a kindness about it that wasn’t there in the past. So, I think it’s getting a lot easier to travel, but you have to be pretty forceful and pretty determined to do it and to make sure that you’re getting the services that you need, but they are available. And yeah, much improved. But Qantas has a long way to go. I wrote to the former CEO, Mr. Joyce, at one point and said that he needed me to come and be a consultant for his airline, so that I would help him fix it, but I never heard from him. And the stories are just terrible of the way that people have been treated with disability on that airline, but maybe they’ve improved.

Jeremy Henderson:

Is there one airline you’d like to give a shout-out to that actually does do a good job?

Caro Llewellyn:

Virgin’s amazing, I have to say. And you can tell a lot by website. And you go on the website, it’s right there, “Do you need assistance?” You don’t have to bury down. Qantas you have to bury down to find that. Then when it’s not there, they say, “Oh, well, did you ring up?” And I say, “No, I didn’t ring up because I filled out the form and it said that it was going to be there. So, why do I then have to ring up?” “Oh no, you have to ring up 24 hours before.” You go to Virgin, they’re there. People are wonderfully cheerful and positive about helping you, asking you the questions when you get off a long-haul flight, say, “Do you need to go to the bathroom before we go and pick up your luggage?” Just simple things like that. And yeah, I found Virgin to be absolutely fantastic. So, go them.

Jeremy Henderson:

Look, I’d just like to finish up with just maybe two last questions before we run out of time. And so, I’d like to talk to you about carers. So, carers are so, so important to the MS community, to people living with MS. Carers across the board are so often unsung heroes, not supported enough. I wanted to talk to you briefly about carers, just in terms of your father and what kind of support he had, both from the family and any external carers, what that looked like. And now, looking through the lens of 2023 and what your thoughts are on maybe carers sin MS.

Caro Llewellyn:

Actually, the Summer Foundation, we had an annual open house and it was talking all about carers, and from both perspectives, carers services and also people with disability and what their thoughts about carers were. And it was fascinating because I think the point of view from so many people living with disability is that it’s got to be about humanity. And I think that it can get very clinical. And this was confirmed to me in listening to the speakers at the Summer Foundation program, that it can get very clinical. And I’ve got these tasks to do to get you… These are outside carers, of course. But we have to do these tasks, and there’s not much humanity in it. And now we’re just talking about the importance of trust, and care, and thoughtfulness, and playfulness, as well as the practicalities of getting the job done. So, I think that my dad was very lucky that he had two amazing women in his life, my mum first and then my stepmum second.

And so, the care that they offered him was very personal and loving and thoughtful. And later in his life, my stepmum hurt her shoulder very badly, and so wasn’t able to do so much of that physical… because it’s very physical work as well. My dad was not a small guy. And so, he did start to use outside carers, but they were all amazing people, absolutely wonderful people. So, I think I have such respect for people who do that work. It is such an important and empowering, and really… Kindness is the word that I want to use. The kindness in taking on roles like that is just beautiful.

But I think, as you said, Jeremy, we often forget that carers need care. And it’s a very hard thing to do to be… My mum’s the 24-hour carer of somebody and also have children. They both had two kids each with my dad, and so they were looking after him and us, and my little brother and sister. So, that’s a lot. That’s a lot. And I think that particularly back then when we were little, that there weren’t so many of those other services and there wasn’t such a recognition of how hard that work can be as well.

Jeremy Henderson:

Quickly. I hope I’m allowed to ask you this question. I understand that you’re actually writing your first novel at the moment, a work of fiction, and that in some manner or some way will touch upon MS. Are you able to talk to a little bit about that, or is it still under wraps?

Caro Llewellyn:

No. Well, it’s very good timing, Jeremy, because my lovely agent has just sent the book out to publishers today, so I’m feeling quite excited. A little bit nervous, quite nervous, but that’s gone out today. It’s called Love Unedited, and yes, it does have MS in it, somebody with MS in it. And it’s a novel set both here in Australia and in the US, and in a little bit in Europe, so covering all bases. And it’s again, looking at what kindness means and what it means to love and care. And so, I haven’t quite got my pitch right, but I’m working on it. I’ve written a novel, it’s done. It’ll be out next year, all going well, all going to plan. So, yes.

Jeremy Henderson:

Congratulations. That’s very exciting. It seems like you’ve got so many irons in the fire, and another one of those is an app that I understand you’re working on, DiversiFit. I wonder if you can talk to me about… This as an app specifically for people living with a disability. I wonder if you could tell me a little bit about it.

Caro Llewellyn:

Yeah. Well, part of my journey with MS is working out what works for me. And the thing that I know, of course, medication is great and medication has come a long way, even in the 11 years that I’ve had, or 12, however many years, 14 years I’ve had MS, come a long way, and it’s so much better and making great inroads. But the thing that doctors know and above all else that works for people with multiple sclerosis is exercise, and I am living proof of that. When I came back from America in 2017, I could barely walk across the sidewalk. I was weak. I didn’t have any strength, and my balance was terrible. And I got a job where I had to do a lot of walking. And I was working in a museum, it was enormous. And I thought I would have to crawl around on my hands and knees because I couldn’t do it.

I got myself a trike. I started doing exercise. I rode everywhere on my three-wheeler, all through the building and all over the place, but also, got very serious about exercise. And a couple of months ago, I walked on the beach. I went down to that beach outside my dad’s house, and I just thought, “I think I can walk along there on my own.” And I got myself down there and I walked along the beach. And I thought, “This is incredible, and this is just because I’m doing all of this exercise.” And I thought, “Well…” I looked into it. There’s something like 250,000 apps for able-bodied people, exercise apps for able-bodied people. And all through COVID friends were saying to me, “Oh, I’ve got this fantastic app. I’m doing it at home. I’m keeping up my fitness. It’s wonderful.” And I’d go on those apps and I’d just feel lousy about myself. I’d be like, “I can’t do those things and I don’t look like those people, and I don’t move like those people.”

And so, the other day I said to my beautiful exercise physiologist, Bianca, I said, “Why don’t we do an app for people like me and other people living with disability?” So, I called up my son who lives in New York, and he was the first one who got me onto exercise. He said, “Mum…” He had done a whole lot of research and he forced me to do it. I was kicking and screaming at the time, but I’m so grateful to him. So, the three of us have developed this app called diversifit.com. And we are not ready to launch quite yet, but if people want to go to diversifit.com, they can sign up and they will be the first to know once we launch early in the new year. We’ll make sure that everybody hears about it first and they can sign up. And it’s designed by Bianca who’s the exercise physiologist, so it’s really safe for people to do. You can do it in a gym, you can do it at home, you can do it wherever. You don’t need equipment. And it will hopefully really help people.

Jeremy Henderson:

So, those modifiable lifestyle factors are something that we speak to a lot of the guests about. And I think it can be so empowering because it’s about ultimately taking some agency in your life, and particularly dealing with a condition like MS, where there is so much that is unknown and you don’t know necessarily what the next day will look like. Being able to take agency and control in some facet of your life can be really, really important and really, really empowering.

Caro Llewellyn:

And it doesn’t matter. The exercises are… You might not be able to do all of them, but you will be able to do some of them and you will improve if you keep at it. And as I say, for me, I just walk around. I feel I’m steady, I feel confident, I’m not terrified all the time to go anywhere. And it’s really just changed my life. It’s given me so much more independence and a sense of being able to be out in the world and not feel completely vulnerable. I’ve got strength and I’ve got… Of course, there are still so many challenges and it’s not all easy, and I can’t walk from miles, but I can certainly get around and do my own shopping. And I think those small things just make such a big difference.

And the other day, for example, I’ve been doing some shoulder exercises because I’ve got a very weak right arm. And for the first time in three years, I could actually hold the hairdryer up above my head and dry my hair, dry my own hair properly, and I was like, “Woo-hoo. This is great.” So, DiversiFit is really just trying to make people living with a disability have something that’s actually for them. I think so often we have to adapt to what everybody else is doing and make it our own, and this is actually for us. And I hope people really… And it’s not only for people with multiple sclerosis, if you are living with a prosthetic or other things, in a wheelchair, there are exercises for everyone, every body.

Jeremy Henderson:

Thank you so much for your time. One final question. I wonder, Caro, if you could tell yourself, your younger self back in 2009, if you could give yourself a message based on everything now in terms of your journey to this point, what would those words of advice be?

Caro Llewellyn:

Don’t be so hard on yourself and don’t let anybody tell you that you can’t do the things that you want to do and how you want to do them. I think that that would be it. Life doesn’t stop with MS and life doesn’t stop, it goes on a different course, but it’s still every bit as rich. And I think we see the world differently, and I think that’s also enriching. So, I think we gain a lot with MS. It’s not just about loss. We actually gain a lot, and I think that that’s a beautiful thing to recognize.

Jeremy Henderson:

Caro Llewellyn, thank you very much for joining us on The Raw Nerve podcast.

Caro Llewellyn:

Thanks so much, Jeremy. It’s been lovely to talk to you.

Voiceover:

Thanks for listening to The Raw Nerve, the official podcast of MS Australia. To hear more, subscribe to our podcast today at msaustralia.org.au/podcast.

Views expressed on the Raw Nerve Podcast, including any discussions or reference to medications or treatments by podcast guests, do not necessarily represent the views of MS Australia and should not be seen as either an endorsement or rejection of a treatment.

 MS Australia does not recommend any specific treatment for people living with MS. Decisions about any treatments, taking into consideration the potential benefits and side effects for each individual’s circumstances, should be made in careful consultation with the person’s neurologist.

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