TONTS. - Why Stories Matter with Astrid Edwards

Episode Date: September 8, 2022

My guest today is Astrid Edwards. The host of The Garret: Writers on Writing, you can also read her book reviews in The Age, The Sydney Morning Herald, Future Women, Kill Your Darlings, The Big Issue and Australian Book Review. In 2021 Astrid contributed to the anthology Growing Up Disabled in Australia. She is one half of Bad Producer Productions, an independent podcast network specialising in arts, comedy and sport (she represents the Arts part). Astrid also judges literary prizes and teaches in the Associate Degree of Professional Writing and Editing at RMIT University. She is a Graduate of the Australian Institute of Company Directors and is also a Member of the Victorian Disability Advisory Council advising the Minister for Disability, Ageing and Carers, making her debut appearance on Q+A in 2021.Before embarking on this creative storytelling career, Astrid was an economics and policy consultant for almost a decade. She specialised in climate and social policy, and to this day is trying to figure out how stories can help save the planet.After being diagnosed with Multiple Sclerosis in 2013, Astrid left the consulting world to pursue what she loves: books, ideas and storytelling. And the world is so lucky she did.You can find Astrid on instagram @_astridedwards_ or you can head to www.astridedwards.comYou can find more from Claire Tonti at www.clairetonti.com or on instagram @clairetontiShow credits:Editing - RAW CollingsMusic - Avocado Junkie Hosted on Acast. See acast.com/privacy for more information.

I would like to acknowledge the traditional owners of the land on which I create, speak, and write today, the Wurundjeri people of the Kulin Nation, and pay my respect to their elders past, present, and emerging, acknowledging that the sovereignty of this land has never been ceded. Hello, this is Tons, a podcast of in-depth interviews about emotions and the way they shape our lives. I'm your host, Claire Tonti, and each week I speak to writers, activists, experts, thinkers, and deeply feeling humans about their stories. Welcome back for season three. My first guest, as promised, is a bibliophile, or in other words, a real-life Matilda from Roald Dahl. Astrid Edwards reads voraciously, and as such, it is no wonder that her resume is full to bursting with all things literary. Astrid is a writer,

a teacher, a broadcaster, and warm and funny, with luminous Mary Poppins-like presence when you meet her in person. She was standing to the side at my lovely Fred Neela's book launch of her book, The Registrar, when we finally met in person. And gosh, it was so lovely. She kind of just glows from within. I can't explain it more than that. And I hope you love this interview as much as I did making it. Let me tell you just some of the incredible things that Astrid does.

She's host of the Garrett Writers on Writing podcast. And she also writes book reviews in The Age, The Sydney Morning Herald, Future Women, Kill Your Darlings, The Big Issue, and the Australian Book Review. She also contributed to the anthology Growing Up Disabled in Australia, which is something that we'll get to in a moment. She was diagnosed with multiple sclerosis in 2013, which is one of the reasons she now works in the literary world. And her career took a really kind of massive 180, I guess. She's also won half of Bad Producer Productions, an independent podcast network specialising

in arts, comedy and sport. She represents the arts part. No surprise there. Astrid also judges literary prizes and as mentioned she teaches in the Associate Degree of Professional Writing and Editing at RMIT University. Interestingly as well, she is also the former chair of the Melbourne Writers Festival and the former deputy chair of Writers Victoria. Before embarking on all of this creative storytelling career, Astrid was an economics and policy consultant for almost a decade, and she specialised in climate and social policy.

And to this day, she's trying to figure out how stories can help to save the planet. So, I mean, honestly, that is one impressive resume. She has worked in all kinds of places from Australia and to New York. She's taught classical Latin in Sydney, and she's even represented the Australian government at the United Nations. So, also, she worked for a private American intelligence agency in Austin, Texas. This woman has done a million things. What I find so interesting about this interview is putting all of her impressive credentials aside. Astrid has a really interesting story about growing up really smart and curious about the world

and what it's like to be diagnosed with MS and how that completely upended and changed her life. And I cannot wait for you to hear her story. Enough banging on from me. Here she is, the bibliophile herself, Astrid Edwards. Thank you so much, Astrid, for coming on Tons. We had some tech issues for two women who work in podcasts a lot. That was quite funny. Look, we got there in the end. We did. And that is the main thing, isn't it? So I wanted to start by asking you about The Garrett. And specifically, that's your podcast, Writers on Writing. Why did you name it The Garrett? You know, if I was to name it now, I probably would not choose that name, but it's a podcast about books and writing and specifically about writers. And there's this kind of,

you know, myth or trope of the struggling writer sitting in the attic, not making any money whilst producing great art. And a garret is the really cheap, small room in Europe that you kind of like, but no one else wants to live in. And so it was kind of playing into that like trope of the struggling artist in a windy, cold attic by themselves. Okay. I love that. Yeah. Cause I Googled it and it said on Google, the solitary genius starving in a cold garret. Yeah, that's interesting. It's a room of one's own, I guess, from a general, that kind of idea. Where did your love of books and words come from? Where did that start?

You know, I find that a really difficult question to answer, apart from to say, I literally don't remember a time when books and words weren't my friend. And some of my earliest memories are actually of learning to read and reading. And when I was in year one, I was at a really small public school and we had composite classes. So, you know, there were a couple of year one kids, a couple of year two kids. And the teacher, we had a reading time or whatever we called it back then. And the teacher made me sit next to a boy in year two and help him read Enid Blatton's Br'er Rabbit. And I remember thinking, this poor boy is not going to want to read this book because it's boring. And I'm a bad teacher and I would like a different book. And that's one

of my earliest solid memories. And so it was just always, it was always me. Books were always my friend and they were always there for me. And I don't remember a concept of myself that wasn't in love with or preoccupied by books. Wow. What was the very first book that you remember feeling that depth of love for? Well, I certainly never liked Eden Blyton. I remember the ones I didn't like. I did love the Narnia books. Look, I loved the Golden Circle books.

Everything meant something to me. And, you know, as a primary school kid, I read, you know, whatever was in front of me. I formed more lifelong attachments to books in terms of the characters or the authors or the genres, et cetera, in high school. But I do remember there was this book that would not be published now, Claire, called Fat Pig. And the main character was a cute little pig who in the world of this story was overweight and the farmer was fattening him up because the farmer wanted to kill him for his bacon and the pig didn't want to get killed and so his friends tied a knife to his tail so every time

he moved the big butcher's carving knife would move behind him and he'd run and he became a really skinny pig. And I just think that is a terrible message to put in an illustrated kids' book basically giving people eating disorders or something. But that also is one that I remember reading a lot repeatedly. Is that because it was dark? Because you quite like dark books, don't you? Yes.

Oh, now I have another one, Spike Milligan's Bad Jelly the Witch. And I had the original copy that's like in Gothic print. And there's like pictures of the kids and God and Giant Eagle and everybody's like not doing well. And that was for kids. Again, would not be written or published these days. No, but maybe kids are missing out because I think they're smart and we don't give them enough credit for, you know, understanding about death and being curious about the dark side of things, right? Where did you grow up? I grew up in Sydney in New South Wales, in Balmain. I'm the fourth

generation and now there are nieces who are there of my family who have lived there since the early 20s, 1920s, I have to say. Oh my goodness. That's amazing. That much history in one family. Wow. What's your earliest memories of womanhood then? Oh, how do you want to define a womanhood? Like my teenage years or? No, yeah, your earliest ones. I'm really interested in, I guess, our girlhood. And obviously this is very gendered conversation, but our ideas about what a woman should be before we start to form ideas about feminism and understand that we're all just human beings on a spectrum. What were your earliest ideas of what a good woman should be? I really rebelled against my mum. I have a wonderful mum and we have a fantastic

relationship now, but I was that kid who made, I was her oldest kid and we were not alike and she did not know what to do with me and I did not know how to escape her. So to answer your question, it's my two grandmothers. My paternal grandmother lived just down the road and so I had a very close relationship with her until she passed away when I was 18. So I had a long time with her and, you know, she grew up extremely poor in Balmain. You know, before Balmain gentrified, it was a very violent, poor suburb. She worked in a pub her whole life because that's what women had to do. And yet she insisted on being educated. She insisted on her children and grandchildren being educated. She insisted on being neat and tidy and house proud and all of those

and polite and kind, all of those kind of values that a person should be, a poor person should be, a woman should be, and yet she was very strong. I don't know if I'm allowed to swear, but my grandmother took no shit and she would stand up to anyone. You know, in Balmain in those days. And there have been heaps of inquiries and stuff. But Balmain was where the criminals and the policemen came to do their business, right? And drank with the footballers. And my nan was the one who mediated between the three parties, you know, footballers, criminals and police.

And she taught me that I should be feminine and lovely, but very, very strong. Yeah, I love that. So she was a kindred spirit. I came late to feminism though. I didn't think it was relevant to me until my late 20s, maybe even my early 30s. I thought that I could be well-educated and the gender wars were over and I was so naive and I obviously missed the memo, several of them. And yeah, you know, both my grandmothers wouldn't have been feminists, although feminism helped them and they would be extremely proud of what gains have been made, noting that there is so far to go. Absolutely so far to go.

What was your other grandmother like? She lived in what was then the country, no longer the country at all. It used to take about three and a half hours to get to Camden when I was a kid. It now takes like an hour with all the freeways that they have built. And she immigrated from Scotland, you know, with her husband and my mother and aunties. And she was, I think that we would describe my parents, my grandparents on my mother's side as like lower working class. You know, they did come out to Australia in the fifties on the white Australia policy and they went to the country and they worked really hard. You know, she did odd jobs and my grandfather

worked in a, like the grocery store and gave, you know, my mother and aunts a really lovely life in Australia. They all moved to the city, of course, as soon as they could. Yes, to get out of there. That's so interesting. I wanted to ask you now about the girl that you were at school who loved books, what was your time at school like other than obviously finding refuge and enjoying books? Books were always my closest friends, but I also had a really good time at school. You know, I wasn't bullied or anything like that.

I had a good group of friends in both primary school and high school. I was never a cool kid at all. I am a lifelong nerd and geek solidarity but my good friends were cool enough to be kind of friends with the cool kids so I was kind of within I was never left out I just genuinely found the cool kids deeply boring and deeply uninteresting um the high school that I was at was also graded and I was always in the smart class. So I spent most of my time at school with the kids who were called the nerds. And some of those girls were my friends for decades. And so I kind of missed the bad parts of school. I had

great teachers, felt really safe in class, and yet was mostly invited to most of the parties or whatever. So I actually scraped through high school really quite well. Yeah, which is not always the story if you're a smart kid and a nerdy kid as well, which is kind of a joy really. It was a joy but also I was also the odd kid. Like I made bargains every year with my teachers. I'm like leave me alone in class As long as my marks don't, you know, drop, I'm just going to sit here and read and otherwise occupy myself and not disturb

anyone else. And you do whatever you're doing, you know, whatever you're getting paid for, just leave me alone and I'll give you marks. Some of the teachers were so offended by that and things did not go well. And other teachers, the good ones are like, sure, you do that. And then after a day or two, they'd be like, but what about this book? Or what about this? Have you read this magazine article? And they'd basically be educating me kind of off curriculum, but really pushing me hard. Yeah, which is really special, I think, to have that because not all schools have,

or teachers have that capacity to do that when they've got a real life Matilda sitting in their classroom? Look, I teach now and I aspire to be as good as some of the high school teachers that I had, but also I don't have time and that breaks my heart because I am the beneficiary of beautiful teaching, but teachers have a really hard time these days. For lots of reasons. I was a teacher and I completely resonate with that. What is it that makes a really good teacher? The ability to go off script. No, I mean that in a really, really, I really mean that. So you have a curriculum and you have a responsibility to your students, to the school and to the parents to impart as much of

that curriculum to the students. But that doesn't mean that each student learns in the same way. You know, some students learn by listening, some students learn by writing, some students learn by practice and seeing. You know, everyone has a different learning style and everybody has different interests. So if you need to teach Shakespeare, to pick like the obvious thing that is still taught in Australian English

classes, you don't have to make the kids sit there and try to read Shakespearean English if they hate it for the first go. Some kids are going to get it. Other kids are going to need to talk about it in class or to see a play or to watch the Baz Luhrmann version or really talk through what a terrible plot it is when two young kids know each other for like three days and so many people die, right? Like you need to come at it in so many different ways and a good teacher will let the students interact with a story or whatever they're teaching in many, many different ways as opposed to being like, no, today we're reading act 1, Scene 5 and you must learn it this way.

That's a bad teacher. Yeah, because there needs to be space for the magic to happen, right? Yeah. And I think that's what worries me about our education system at the moment, that teachers are overworked and there isn't room for kids to have that space and time to explore and follow trains of thought to their conclusion and have some fun. I agree. And I just want to be really careful that I in no way blame

teachers. I think teachers have been squeezed by all sides and it's not fair and teachers aren't providing what they used to, but it's not the teacher's fault. No, no, a hundred percent. I saw you post on Twitter about what's happening in our universities here. Could you talk to us a little bit about what you see? Yes. So I, look, I have many degrees. I always thought I would end up in academia, you know, ivory tower, and I have changed and also the university tertiary sector has changed. I have been teaching in vocational education, what we used to call TAFE for several years,

teach at RMIT University in the writing and publishing and editing associate degree. And this is a pathway for people who didn't finish school or have fallen out of or can't get into the kind of typical education pathways. And that is actually what makes it beautiful. And so I see students who are using the course in order to learn something amazing, you know, books and writing, which is, you know, my heartland, but also students who are using

it to get back into the system. And the system of university used to be relatively safe. It was never perfect. And, you know, the glory years still were fraught, but now the system is basically persecuting the students. Support staff had been taken away. And I mean, support staff for the teachers. So the teachers now are both administrators and teachers, and they don't have time for that. And it's certainly not paid for that. The state of some buildings is pretty abysmal when you think about how cheap a coat of paint and clean bathrooms actually is. The students themselves have had an extremely difficult time through COVID. In the area that I teach, we actually

have zero international students. So I am not referring to the international student experience, which also has been horrible. But so many lost their jobs because they were working in retail, hospitality, which obviously didn't go well during the pandemic. That meant that their living situation sometimes, which was already precarious as a student, became dangerous. They had to move home. They had to move in with friends. They didn't have a place to live.

The university spent the first couple of months of COVID working with local churches and community groups to find free food for students. You know, COVID did very badly for that kind of young cohort that is just out of school or a few years out of school and kind of lost the 18 to 21 year old experience of learning how to be a functioning adult and learning what kind of works and what you can do because society didn't really provide it very well. And the university as part of society didn't provide it very well. That's a long, and I'm probably going to get into trouble for that, but that has been my experience of, you know, trying to teach students online through a pandemic and some classes are still online. Some are in person. It's a bit of a mixed bag,

you know, drinking in their beds. And I'm like, well, I wish you wouldn't do that, but also I'm probably going to have a drink out of class. So, you know, like, you know, it was just that we were in Melbourne and it was very, very fraught. Those lockdowns were long and the mental health impacts of the pandemic become, you know, individual become very clear in a classroom. And especially so in a classroom where people have enrolled in a degree to write stories because they're either there to write their own story or they're either there to write their trauma or they are there to fictionalize something that means something to them. And so you get a lot of disclosures in class. You get, I've had one person have the beginnings of a breakdown in class,

you know, you get real life in the classroom. And that has reached epic proportions during COVID and kind of in whatever this ongoing COVID period is. What do you do as a teacher when someone is going through something so immediate in the classroom? I would say that students who enroll in the arts are beautiful souls and they are very compassionate and they are supportive of the stories that they hear in class and of people's emotions. So I would say that, you know, you have to look after all of your students and, you know, some students are 18 and some students are older than me. And in those really critical classes, I have been supported by the older students and I'm not really a teacher.

It's more the adults in the room kind of thing. The older people in the room are trying to be helpful and human and supportive to everybody. That's so beautiful. That's the gift, isn't it, of working with people and teachers as well, give such huge amounts of themselves but then building that classroom climate of support for each other and I imagine that's on an extra level when you're working in the arts because, as you say, people need to be vulnerable and you're handling people's stories with so much care.

And having said that, I would say that I did the worst teaching of my life in 2020. I mean, I don't think I was a brilliant teacher at that moment in time. You know, I got through it and the students did and they said lovely things about me but I wasn't at my best and it's okay for students not to be at their best at this time as well. Yes, 100% exactly right. Do you think you see things starting to change now that things have opened up? Is there going to be more support for students? I have two answers to that. I think the act of opening up and things

not closing is very helpful to immediate mental health challenges and also to people's ability to, you know, get their job back and keep it, particularly students who are going to be working in retail or hospitality. I think that not everyone is doing okay, nor do they have to be doing okay at this point. And we're really starting to see in the universities this split between the students who want to and are willing to come back to face-to-face split between the students who want to and are willing to come back to face-to-face class and the students who say they want to come back to face-to-face class, but then don't and demand online access. And both aspects, both responses

to this ongoing COVID are right. I don't have a judgment there. It's just almost impossible to teach in person and online at the same time. You can teach really well online to your cohort. You can teach really well in person to your cohort. Both of those options can be recorded for later viewing. But to like the synchronicity of dealing with people who are looking at you via some online platform and dealing with people in the room, I don't know a teacher who can do it well. Yeah. It's just doubling the workload.

And reducing the quality of teaching for at least half of the group. Yeah, absolutely. We have a huge amount of work to go, don't we, with all of this. We're all still grappling with it. We're all still human beings. So let's talk about you a bit more. I want to ask you how you started in economics and policy consultancy. Oh, look, I thought I was going to save the world. I'm sorry, everyone. Totally failed. Did not. Look, I'm disappointed, Astrid. Tell us. So that's why. Because I don't know if everyone thinks they'll go straight into economics and save the world, but maybe that's where we need to start.

Why did you think that? Look, you are correct. I studied economics and government and international relations at university. I am the odd one, as I said, I think earlier. At the same time, I did a double degree. That was in my commerce degree. I also studied classical Latin and English literature in my arts degree. And I did much better in the arts degree, let's all be honest.

So I was doing both at the same time and really it was a supersized arts degree because I only wanted to study arts and realised that they wouldn't let me study everything, so I had to do a double degree and economics and government you could do in arts. So basically I have a supersized arts degree. Government and international relations is an ongoing fascination for me. I still am quite current there. I read an extraordinary amount of nonfiction and, you know, that has been a lifelong

kind of interest for me. The economics I was terrible at and everyone told me it was really important. And the only thing I learned was that economics is a terrible faux science that has hurt the world. I'm just going to sit with that learning. That feels incredibly true. Well, it's not helping us any, you know, since my university days, we've had the GFC. I mean, I didn't see that one coming. No, correct. Exactly. The whole thing. And then don't get me started on capitalism and the problems with the way we're using our planet currently. I've seen you write that you are still hoping that stories will save the world. I am. Yeah.

What does that phrase mean? I think that stories, and I mean, whatever stories people love. I mean, it could be movies. It could be plays. It could be music. It could be books. It could be poetry. You know, whatever kind of makes that connection with someone.

I think it can save people at the individual level. It has for me. I've seen it in my me. I've seen it in my students. I've seen it in my friends. In terms of stories saving the planet, we need all the help we can get. And I don't think stories are going to somehow address climate change. I don't think they're going to stop war. I don't think they are going to end poverty. But I do think that stories change people. And people have a lot of work to do right now even if it's as simple as changing their vote even if it's as simple as learning about their local area

and doing better for their local community and environment so I feel like stories are a way of us all doing better internally and for ourselves but also doing better for the people around us and the world around us. Yeah, absolutely. So you worked as a consultant. Yes. I'm sorry, everyone. Oh, look, was it, is it House of Lies? I think. Have you ever watched that? It's a show about consultancy. I stayed away from it because it's too true. Yeah. everyone is horrible and soulless. Oh, yeah. Is that? Oh, gosh. I'm sorry to anyone, any consultants listening as well. Look, I need to jump in here and say the consultants who specialize in health and social policy, the consultants who really look at the environment and climate change, I give exceptions

to. They are beautiful people and we need them. Okay, good. But everyone else in the building? I'm not convinced. All right. Is that where your reckoning with feminism took root? Because I know you talked about you thought you didn't need to be a feminist before. In the corporate office? My goodness, yes. I came face to face with all of those obvious problems that you get as a female in you know the corporate world there are plenty of females it's not gender imbalanced in the sense that there are no females in consultancy but in my eight years as a consultant there was only one senior female that I at either of the companies that I worked with everybody was male and everybody

was competing with their own little fiefdom. And the thing is, as a consultant, you're not quite as bad as a lawyer. You charge in 15-minute blocks, not six-minute blocks. But the point is you're just judged on your utilization, how much money you make, how much your clients are worth. And no one reads those reports. All those reports get put in someone's bottom drawer for a year or a decade or whatever until it's politically expedient

to leak them or to action them. It's ridiculous. That's really sad in a lot of ways. When you say the usual stuff that females deal with, what is that, Astrid? I once found out that a man who was a rank lower than me, you know, consultancies are ranked, was earning a substantial amount more than me, even though he reported to me and he was kind of not that competent. I think the best way to describe it, Claire, is I lost

my shit. And there was a very large scene, which I remained justified in participating in, in my part in. However, I was then said, oh, you're a bit too emotional. Wow. I'm like, do you realise he's getting like that much more money than me? And I'm basically having to manage his incompetency. And why? Why was he getting that much more money?

I don't know. He had the confidence to argue better when he joined the firm. I mean, I don't know. It's just one of those structural things that you're just like, what? Anyway, that precipitated. It took me several years to get out of consulting. I did leave that company and go to a different one that had equally silly and stupid problems.

But I had people touch my hair. That's messed up. Because my hair is normally curly and I learned that I had people touch my hair because my hair is normally curly and I learned that I couldn't wear my hair out curly because older men would insist on touching it because oh my god there's like a smart person with curly hair and I'm a white woman with pretty mousy brown curly hair it's it's not the experience that the racialized experience that black women get with their hair but it was enough for me just, you know. Oh, and like the sex and who gets to like, you know,

go up the ranks and who gets invited to drinks, all of it, all of it, dirty. Wow. So really like it is as overt as you're not a bloke, so you're not invited to the golf, to the dinner, the drinks on the Friday night. Or if you're invited, you then find yourself in the position of being a female who is out at night with the blokes drinking or being a person who doesn't drink. You know, you're then just facing different issues.

And then it's, you know, like, what are you wearing? What time did you get home? And did you go home with anyone? I want to also say individuals in consulting aren't terrible, but the culture often that you find in that environment can be very terrible. So any former colleague listening to me, I'm not trashing everybody. It's not a healthy environment, however. Yeah.

And then was there just a moment or was it a series of moments that you went, enough is enough. I need to change. I need to get out of consulting. I knew I needed to get out of consulting and I knew that because I wasn't happy. I also felt that my, I was really career oriented and I felt my career prospects were curtailed because our former Prime Minister Tony Abbott repealed the carbon pollution reduction scheme and that was what I was working on as a consultant in that area.

And also I had half a master's. I would have been one of the first people in the country to have half a master's on that legislation that was repealed. So I was pretty broken over that. And once I'd already come to that conclusion, I realized I was very sick. And a few months later, I got diagnosed with multiple sclerosis. And at that point, I'm like, I'm out. Fuck this. Yeah, completely. Was there signs leading up to when you had the diagnosis or were there things that were missed? Oh, yes.

I was diagnosed at 32, otherwise relatively healthy. I am the stereotypical MS diagnosis. A white woman of Scottish descent who has very pale skin and doesn't go in the sun had her symptoms dismissed for at least a year. No one will ever know how long I have had MS, but I was actively feeling progressively more unwell and fatigued and tired with odd things happening in my body for about a year. And I thought it was because I hated my job. I thought it was because the carbon pollution reduction scheme was repealed and having consequences for my career. I thought it was because I was working hard and playing too hard at work, right?

Like it was, I thought it was all of these things, but I kept going to the GP and then like, oh, you just need to sleep more. Oh, well, you know, are you depressed? Oh, Astrid, just drink less. Like, yes, sleep more and drink less is healthy for everybody. But also I had a major progressive and degenerative neurological disease and no one picked it up until I had a full-blown MS relapse. So, you know, they could have listened a little bit more.

And that really goes into the ongoing minimization of women's pain. And that's got nothing to do with multiple sclerosis. That has got to do with, you know, a woman turns up and has cramps in her stomach. You know, it might very well be something incredibly serious, including endometriosis, and yet they're dismissed as period pain or just Texan Panadol or it's all in your head. Like women's pain is not believed and therefore there can be consequences. And trivialized and underdiagnosed as well. Why do you think that is? Oh, so many reasons. You know, there are many,

many wonderful female doctors and medical practitioners. It's not because there aren't women in medicine. I think it is because women's biologies are different, right? Also, like for example, MS is quite a gendered disease. three quarters of people who have multiple sclerosis are women and yet it's one of the it's a very commonly misdiagnosed disease because the symptoms can be what used to be called hysteria extreme fatigue cognitive dysfunction aches and pains sadness mood changes so many symptoms that they look like you're just not doing very well or like you are depressed and yet you know doctors don't necessarily keep digging and kind of seeing if there is a cause that is causing all of these things in one person what did it look like that big episode that you have very dramatic and it looked like nothing. I was part of, you know,

my company, my team was putting on a big conference. So I was at a conference all week and I woke up on the Sunday before this big week started violently. Only time in my life I sat up awake and my feet were on fire, which is an incredibly odd sentence to say, but my feet were on fire. I'm'm like that's a sensation I have never felt in my life that's weird and I hadn't been out late the night before hadn't been drinking I'm like okay I don't know what this is I'm just gonna stay home today and rest and then go to this big week at work and over the next four days um so you know Sunday Monday Tuesday Wednesday the fire came up to about my knees I'm like I need to go see someone I have either I'm

either imagining this which is a very bad sign or this is a real sensation which is also a very bad sign I went to the GP on the Wednesday they're like oh this is a bit weird we'll have to get you an MRI and they ordered an MRI and I think it was like 10 days away and then I think it was like that night the Wednesday night I went back I like, this is coming up to my waist and they're like, oh my God, you have to go to emergency. So my GP literally wrote and printed out a letter, gave it to me. I walked myself to the hospital down the road while the GP called ER and said, there is a person who's going to look very healthy walking in

and they have a problem. I was in emergency for about and got to bed for about 24 hours so like we can't do anything with you. You either have a brain tumour or multiple sclerosis, wait for your MRI. So I had an incredibly bad week of just freaking out, to be honest. Went back to work, looked fine, and yet couldn't feel anything apart from on fire from, you know, my abdomen down, got the MRI results, and I had multiple sclerosis. So it was quite pronounced for me. It was extremely difficult to have those sensations in a body that was otherwise walking around in a suit, you know, earning my living. Very mentally destabilizing, incredibly hard to realize

that you're very ill and yet no one is rushing because I can't do anything. You know, it's not like you have a broken arm that, you know, can be tended And no one around me realising anything was wrong unless I told them. And if I told them, no one believed me because it's like, well, that can't be true. If you were that ill, you'd be in hospital or you'd be asleep at home. It's very odd. Yeah. Why did you go back to work? I don't know.

Look, probably a bit of denial, probably a bit of routine and clinging to routine when everything else felt like it had fallen away. I don't have a better answer than that. I didn't have a different idea. I took a week off as soon as I got the actual diagnosis. Didn't go back to work that day. But, you know, them or I wasn't, you know, it was the original one that was scheduled for 10 days away.

So I had this kind of time where I still maintained this life that had fallen away from me, but I didn't quite realize. Yeah. I guess you need time to even contemplate or process the fact that your whole life might be upending and changing. That's a huge thing to be going through. Do you remember what it was like when they told you in the room? My mum was there. My mum's a former nurse and we knew I was going to get some form of not great diagnosis. So she flew down from Sydney, all that's happened in Melbourne. And we've talked about this since. I love you, mum. You'll be listening to this. I have no doubt. She freaked out in a way, a different way than me. I remember I asked if I could still eat cheese and drink wine and was assured, yes, I could with multiple sclerosis and that was my only useful question

my mother had some better questions and she and I were both remembering what multiple sclerosis was like up until like you know the last 10 years when there were either no treatments or very very brutal treatments that didn't necessarily work and or increase a huge amount of quality of life. Neither one of us obviously were up to date in how MS can be treated these days. And there are several different types of MS and it is different to everyone. But I have the most common form of MS, which is relapsing, remitting multiple sclerosis. And there are many medications and therapies for that. And so the fear that we felt was real and it still remains in me and my family and my partner. But also we've now witnessed years of amazing therapies that mean that my MS hasn't

progressed. I have it, it affects me, but it hasn't degenerated in the way that used to happen for everybody with multiple sclerosis, which is good. It is really good. That's kind of miraculous in so many ways. Modern science. I know. Let's lean into our scientists for sure. What is the way that it typically presents when you say there are symptoms? What are those? A few years ago, I hand wrote a list of every symptom I've experienced. And the reason that was kind of what I thought was going to be a useful exercise is because any symptom I experienced as a person with MS is caused by a particular lesion somewhere in my brain. And once

I've had it, it could come back. At three pages, I decided to stop writing. So there are a lot and some of them are very strange. So for example, there's this thing called Lamette sign. And if it's happening for me, if I tip my head forward, I can get a bolt of what feels like electricity running up and down my spine. I know, completely random, but that is one of the signs of multiple sclerosis or an active relapse. But there's the ones that affect me most and, you know, that affect me this week and today would be neuropathic pain all over my body, which is very tiring, but separate to that fatigue and like real fatigue, the kind of fatigue that I could spend a week in bed and still just be as tired.

I sometimes slur my words and I sometimes say the wrong word, not because I am drunk and not because I don't know the word I want. It just, I don't find it in the flow of a sentence. I have incredibly bad coordination and balance. If I'm tired, I run into things, particularly on the left-hand side of my body. You know, when I'm very tired, I run into things, particularly on the left-hand side of my body. When I'm very tired, I can't use lifts or escalators. I can't figure out how to get in or out of them because my proprioception doesn't work. Proprioception is not anything that you ever need to think about, but it's your brain and body's ability to tell where things are in space. So it means I can't really tell where my hands and legs are, which makes

walking difficult. I've once broken my own toe by walking home from work because I just put it down on the footpath wrong. I've walked into a lift because I couldn't figure out when it was opening or closing. You know, these are things that we learn, you know, I don't know what at 12 months old, like, you know, like these are lifelong skills that leave me and cognitive dysfunction, meaning my brain just works very slow. And that is the one symptom that I find mentally and emotionally most difficult to deal with because I pride myself on being a, you know, an intelligent functioning capable adult. And when my brain is slow, that's a real challenge to my sense of self. And so that's the

one I hate. I mean, I hate them all, but that's the one that I really don't like. And when I feel my brain is slow, I do try to stay home on those days. And I have learned also not to send emails or do Zoom calls on those days because I perform quite badly. Wow. Is that badly for Astrid or badly like objectively? Because I feel like Astrid on a bad day is most people on a very good day. Oh, look, there have been some pretty bad things. And, you know, I've had a friend, Jamila, have to talk me out of doing a live event. She's like, you can't. So, you know, sometimes it can be. And I've learned to, you know, manage that now. But that has been, I guess, one of the hardest things for me to kind of, you know, wrap my

head around, so to speak. Yeah. Has it been wonderful having Jam as someone who's going through a completely different type of illness, but is a similar super high functioning person? Has that been? Oh, look, we both have broken brains in a very, very, very different way. It has been amazing. I have learned so much from Jamila about everything in life,

but also about being a person who is ill. And, you know, I think a lot of our friendship is both of us saying to each other, just go to sleep and, like, it's okay to say no. It's okay to get someone else to do it. It's okay to take a day off. It's okay to not turn day off it's okay to not turn up it's okay to turn up online instead of in person because it is those kind of things uh have been helped by the pandemic simply because the whole world kind of started to stay home or do things online but i think that that should stay the The pandemic has been terrible, but the accessibility that has

come with the pandemic is not terrible. Absolutely. And the inclusion that it has allowed, right? People with all different types of disabilities are able to be present and it's fine and socially acceptable and, you know, wonderful. Absolutely. So what do you do to process all of this huge amount of emotion and trauma, I guess? What do you do in your life? Oh, I read and I mean that not as a joke. No, I know. Everyone I've spoken to about you is like that bloody Astrid.

She's back on it again. I'm so sorry. No, but what I did was, you know, one of the first things I did was get very drunk with my mum. And the second thing I did was sit down on Amazon and literally find, I think I found about 20 self-published memoirs of people with MS, order them all. And then as they came, read them. And I have since continued to buy memoirs about multiple sclerosis, both self-published and traditionally published. And every single one of them has meant something to me because what a

doctor tells you, you really need to know and you really need to listen to your neurologists and specialists. But the human experience of living with a condition can only come from other people with a similar condition or the same condition. And I think going back to your question about Jamila, we have incredibly different diagnoses and medications and all the rest of it, but the experience of being in an ill body can be quite universal. And that's what I find in books, you know, that human experience that you can't get in a pamphlet that a doctor gives you. Yeah. It's seeing your experience in someone else's experience and yeah, feeling seen.

Also pure escapism. If, you know, the day is bad, then I can make it better by going somewhere else. Yeah. Yeah. Back into that big mind palace of yours, into stories and escaping like you did when you were a kid? Absolutely. I think we all have those in different ways. I'm sure not everyone is reading the incredible amount of like policy and all kinds of things that you're across all of the time. I wanted to ask you now, so once you had the diagnosis, is that when you decided I'm just going to throw all of this consultancy out the window and I'm going to become an arts person

and work in the creative industry. Yes. Now it did take about nine months from, you know, day of diagnosis to, you know, putting in my resignation. So the decision was that quick. The implementation of the decision wasn't because, you know, life obligations and bills and all the rest of it. So it did practically take time. I did go down part-time. I didn't go back to work full-time. And I was just very distracted by being so ill. And the first year after my diagnosis was the year that I was consistently the illest. And that's because I hadn't started medication yet. They were trying to figure out which one would go on and all the rest of it. So I have had my physical experience significantly improved since starting MS therapies.

But I didn't know what I was going to do. I mean, how do you make money in the arts? It's like impossible. How do you pay your rent or pay your bills? How do you have a career? Particularly if you've just been wearing a suit and, you know, selling your soul to the corporate devil. So it was difficult.

And I guess my way in was kind of happenstance, but something that I remain incredibly grateful for. I just started going to events at Writers Victoria, which is the peak body for writers in the state of Victoria. And they had an opening for a board position and I'd never served on a board position before but it had already become apparent to me that most people in the arts had never sat through a really boring business meeting and I can do those really well so I thought oh I actually have some skills that this new area of life might need and I've mostly served on boards in the art

sector since using those evil corporate skills hopefully for the good of the arts and specifically writers who are undervalued and underpaid and some of the best people in our society. I totally agree with that. I think there's so much exploitation of our creatives and our writers. What is it you love about writers so much? Oh, they have given me so much joy over the years. They have taught me so many things.

I think it's a special person who can do the thinking and the feeling required to tell a story, whether it's, you know, fiction or nonfiction, you know, fantasy or fact, whether they can tell it for others. And, you know, I don't have a book in me. I would love to write a book. It's not where I am at. I am a person who helps others engage with books and the people who write them. I just think it's such an undervalued skill in our world. I mean, you know, gosh, we like pay huge amounts of people who can read a spreadsheet and great, but they've also ruined the world. Why don't we pay huge amounts of,

give huge amounts of respect and also, you know, financial remuneration to people who kept us happy and occupied and alive, you know, throughout those long COVID lockdowns when everybody was binging Netflix. You know, that's art that required writers. Yeah, a hundred percent. I saw you wrote a quote or said a quote, if you don't have time to read, you don't have the time or tools to write. It's as

simple as that. Do you still believe that? I do. I'm also aware of a current debate on social media about the privilege of reading. Reading is a privilege. Firstly, it requires a certain level of literacy. It also requires the very limited resource of time. It also requires access. If you're a kid, you need access to a library or, you know, a place with books. So outside of the accessibility argument, I think that reading is a skill and we don't value it. I am still thinking through the kind of large debate about the privilege of reading though, because I think that if we make reading only a privilege, and again, outside the accessibility issues, right, that's

different. But if you have access to books and you're just glorifying reading as this lying on a couch or lying on a beach and reading for pleasure, that actually misses what reading gives to society. Reading is education. Reading is an understanding of our world in order to not repeat the mistakes of the past. I mean, you know, we're recording this in 2022 and the world is not doing very well, but let's just say, you know, war in Ukraine, that is based on the mistakes of the past from the 20th century. And if you don't read, you don't know about it. And it's horrifying to think that our policymakers and leaders maybe haven't read a book on 20th century history. It's actually terrifying, really. And that's what terrifies me about the leadership. And though I'm really hopeful about

our current government, it still terrifies me that we don't have academics in those important roles. Why shouldn't we have a minister in charge of education who has a PhD in education? You know what? Part of me would love that, but also part of me, bless academics. I love them, but also sometimes they shouldn't leave the university grounds. But no, we like, yeah, I think that it's so important to not have bureaucrats make all decisions, but it's so important not to have politicians who might be incredibly great communicators on TV or one-on-one when they're doing their handshake kissing baby things, actually don't have any experience in the portfolio they're managing yeah 100 absolutely uh what is your best advice for writers right now I mean I know that's

probably a very obvious question for you you know it's not an obvious question um it is to read but I don't mean that in a in a snarky way and because I keep banging on about it. I mean it because there is, like Australian literature is having a renaissance now. And I think that Australian literature has been undervalued for a long time for many, many reasons, partly to do with the academic establishment, but for many other reasons as well, coming from publishers, coming from booksellers, coming from writers themselves.

I think if you want to write now, you need to be able to explain to yourself and to your reader and to your publisher and the bookseller why you, why are you the person to tell that story. So that goes for made-up stories and it goes for journalism and, you know, non-fiction books and I think that people want that authenticity you know if somebody wants to read about a certain topic they don't just want to read about it from a person who's really good at writing and research they want to read about it

from a person who's really good at writing and research but has a reason and has an overtly stated angle about why they're writing it and what it means to them and why they just spent a year or two years or 10 years of their life telling that story. I think that is what makes you sellable and I think it is also what makes you readable. It's so interesting because that's nothing to do with technique. Oh, that can be, I mean, look, you know, not everybody, there's a saying, everybody can write a book, not everybody

should write a book. So yeah, like there is technique and skill involved, but that can also be taught. And I say that as a writing teacher who also doesn't believe you have to go to a writing course in order to publish a great book. You know, there are many different ways to publishing a book. What are the writers that are emerging that are exciting you at the moment? Everyone because they no longer care about the establishment and it is glorious. But to be more specific, she is no longer emerging but one of my favourite contemporary writers is Claire Coleman

who writes speculative fiction. She's just published her third book, Enclave. I really like the nonfiction that is also being published in Australia on everything, you know, pushing back against the violence of all forms, pushing back on patriarchy in the system, pushing back on gender norms and, you know, expectations on how we present in society. I don't consider myself old, but what someone 10 years younger than me can think and write, they teach me so much. And it is extraordinary. I can't be bothered reading someone who is 20, 30 years older than me. they're the people who I was taught are the great writers. Love you all still but also I want to read new stuff,

new perspectives that's challenging. Yeah. Why is that? Oh, I don't have a good response to that. It's just do we really need another book about how hard it is to fall in love and keep a relationship. I mean, that's important. And I would like to, I am in a relationship and I would like it to, you know, function and make it work and be in love for the rest of my life. But also there are literally

thousands of books like that. And many of them are very good. I want a book about what it means to be a human living through what is turning out to be a very bad decade and a very bad century, what it's like to live through and be alive and use electricity and drive a car through the sixth great extinction on our planet's history. There are big topics that I would like someone to explain to me because I don't understand it and i don't need another like comedy of errors or whatever i'm so cynical i'm so sorry and i'm in so much trouble but that's the thing though all of this stuff is about ideas and the debate around it and not every book is for everyone right and true True. And also, you know, and I don't think there's anything wrong with grappling with our impending doom, Astrid. Look, I think that more of us should do it because it's a healthy thing, right? Like when you get, like me, when you get diagnosed with something that you don't want, it's not fun, right?

Like this is not a good experience. But if you don't grapple with it, you don't learn to live with it. So we kind of need to do some grappling as individuals and as, you know, a city and a society and not enough of us are grappling with it. We're all just binge watching Netflix, which also I do, but I don't know. I feel a responsibility and I wish, I don't know, I wish we all felt a responsibility to kind of look at the very bad things if we are, you know, in a mentally safe enough space to do so and,

I don't know, help each other act. Yeah, because there is something about looking at the very bad things and it making your life technicolor in a strange way because you are so intensely grateful for the sun that is here and the sky that is here and the sky that is here and the coffee that is excellent and the face of that person you love, you know, which all sounds very corny, but I'm really interested in what the positives are of your diagnosis, I guess, and the very bad stuff. You know, I thought a lot about this and I think my answer has changed over the years

and, you know, I'll give you one now and it might very well change in a year or two again. It's not a static answer that I have. The positive is that I became more whatever I was before. Now that includes my flaws. I was flawed and I still am flawed, but all my flaws became more real and all of my great attributes, and I like to think I have some, they became more real too. And they changed. And I think my flaws became strengths. And I think I'm a better person now. I also think that I have, I'm a better teacher now. I have a great deal more empathy and compassion and patience. A great deal more. Like it's fundamentally different. I like to think I was a nice enough person before but now I think I do that better and I hope that that helps the people in my life I hope that's a good thing that's a beautiful answer I hope you keep so do I yeah reminds me

of the velveteen rabbit do you ever read that story yeah you become more real as life kind of, you know, changes you. And I guess that's the thing with aging too, right? I am beginning to learn. I know. How do you feel about the whole idea of women being attractive and beautiful and beauty. Where are you sitting with that side of things? I find that I bore myself and I find it boring to think about. So I actively don't until, and I don't care, you know, I've stopped dying my hair. I have some grays. I've decided I don't care. But also I go into a full blown patriarchy inspired panic every time I do a live event and feel a need to find something great to wear and feel a need to get my hair done and feel a need to put on the makeup. So I actively kind of ignore it until I'm faced

with photos and a bunch of people. And then I desperately want to be attractive. And I don't particularly like that about myself, but it is also true, right? I feel like I have to turn up having tried very hard, which is silly because the live events I do are interviews and everyone's turning up to see the person I'm interviewing. So it's irrational and yet very real. I am a white woman and I recognize that as a person who is quite ill and has an invisible disability, a series of invisible disabilities, the fact that I'm white and can present myself well really protects me from a great deal of stigma. So I also feel conflicted about that. It's a form of privilege as a Sikh person.

It's like an alima almost. What did you mean by patriarchy inspired? Oh, that's a big statement. I meant that, you know, I mean, I am not a gender expert. I am not a feminist that has been going through the arguments, you know, since I was a teenager, I am late to feminism and I regret that. But, you know, patriarchy is the current dominant mode of how society is structured. It doesn't mean patriarchy is not being challenged from

everywhere, including all those books that I like to read, but you know, it's, it's still out there. You know, I work at a university hierarchy that is mostly males. You know, it's still there. I walk down the street and I get less looks than I did before, but I still get plenty of looks and that just shits me. It's just this constant burden. Yeah, and the burden that we put on ourselves, you know, there's like an external thing that I find myself kind of almost hovering outside my body, looking back at me,

thinking what are other people, men, whoever, seeing me as? And that's exhausting and boring. I agree. It's so boring. I kind of try not to, I don't know. I am not a good person to talk about this because I struggle. But one area of this that I have found joy in is being an active auntie to my two nieces who are eight and eleven and I have a partner and he's very tall and he has a he does voice over he has a very deep typically masculine voice and every time we hang out with them which is a lot

he wears one of those futurist female t-shirts and also he sits in the back of the car, which he does not fit into because he's six foot six. He, you know, gets very interested in things that he's not interested in. But the point is, you know, he does the cooking, he does the sitting in the back and I do the driving and I do the sitting on the couch doing nothing. And I have to say, doing this in front of an eight-year-old and 11-year-old who have already socialized to think that he should be the one driving, he should be the one doing the cooking, he should be, you know, the one making the decisions and sitting back and doing nothing. Changing that for them is deeply, gloriously fun. Oh, I 100% agree. I have a daughter and a son, and that's one of the best bits about parenting. You just get to flip the narrative

and then the things they come out with, we're being really careful to try and leave the door open for them to just be whoever they are in the world. And that's a beautiful thing because they don't come with all the baggage that I grew up with and all the expectations and that's just a constant joy. Speaking of joy, tell me what the book that changed your life is or is that too hard? Is that like choosing between your children? What's one of your books? You know, it's really hard and I am going to say something really,

really strange by way of answering. Many of the books that I read, and I read a lot, right, but many of the books that I read during my high school years, you know, I still have and still, well, I think they're objectively terrible now, I still have a great deal of emotional love for. And I was quite an anxious teenager. You know, if I was in high school these days,

I probably would be close to social anxiety disorder or thereabouts. I was really, really constrained by my anxiety. And I developed this little mantra of my favorite characters' names. And there were seven of my favorite characters, and I'm not going to tell you who they were, but the books meant so much to me that I would say the names of the characters as a little mantra. And that was my way of dealing with my crippling anxiety.

Wow. Was there a common thread in those characters? Yeah, they were all men. And I wonder about my teenage self. It would not be the same list if I was writing it as a woman. I was hoping you were going to say, and they were all women doing brave and bold things in the world. They should have been.

I should have chosen better. Yeah, absolutely. Oh, well, thank you so much, Astrid. It's the first time I've spoken to another person that makes podcasts with their partner. Can you tell me quickly? I know we've been talking for a while. How did you end up in the podcast landscape doing Bad Producer? Yeah. How did you end up in the podcast landscape doing Bad Producer? Yeah, so my partner is Jay Mueller and he spent all of, he's from America, but spent

all of his career in Australia working in radio at Triple M specifically, you know, blokey blokes. Anyway, when we met, you know, radio and writing felt like different worlds, but technology is actually moving so fast that radio is simply storytelling and writing has always been storytelling. And it became really apparent quite fast that one of the reasons why we get together and love each other is because we are both fascinated by stories. And you can have, you know, fiction podcasts, you can have nonfiction podcasts, you can have comedy and arts and sport and news and whatever you want. It's an infinitely malleable medium. And I don't know, it felt

sexy to start a company with your partner. I don't know. We were on holiday about six months after we met back when people had overseas holidays and just on a train in Germany, we're like, we'll start a company. And we drew the logo and there we go. Really? That's how it started. Oh my goodness. I just love that. And then from there, have you really enjoyed working with your partner? Has it been upside down? No, we've really enjoyed it. We still enjoy it. What we do in the company itself has kind of, you know, evolved and changed, but it's still going about seven years later. And, you know, I mean, it's doing well. So, you know, people want stories and I think it's really important that stories don't have to be written. They don't have to be in a newspaper. They don't have to be online. They

don't have to be in a printed book. People can listen to stories like this. Yes, exactly. Listen to Astrid Edwards' story. Absolutely. I love that. It is a strange thing. Do you get people saying to you, oh, I could never work with my husband or my wife? Look, they do. And the only downside of working with my husband is that he literally has a voice for radio and I don't. And people listen to him more than they listen to me. And so we now have a rule that if we're in a meeting together, he can't say anything until I've finished because he just has one of those like army voices that commands attention.

And that has been difficult for me to get used to. So now I speak first. I love that. That is a great way to finish, I think. Astrid, speak first. Absolutely. That's really great advice for any woman out there, I think, or anyone on the gender spectrum for sure. Thank you so much for the gift of this conversation and the

work that you are doing in the world. All of the myriad different ways that you are showing up for people in the arts, everyone I've spoken to about you has just been so effusive. And so I really, really appreciate everything that you are doing and the gift that you are giving to all of us. So thank you very much. That is a really beautiful thing for you to say, Claire. Thank you. And thank you for having me on your podcast.

Oh, you're welcome. It's been so much fun. Thanks so much, Astrid. You've been listening to a podcast with me, Claire Tonti, and this week, the wonderful Astrid Edwards. For more from Astrid, you can head to astridedwards.com where you'll find links to all her publications, events, speaking, podcasts, projects, and just all the cool things that she's up to. You can also head

over to Bad Producer Productions and she is on Instagram at underscore Astrid Edwards underscore. And her podcast, The Garrett, is on all good podcast apps. So I would go and listen to that, particularly if you are an aspiring writer or you just love to know the ins and outs of how books get written. That's a wonderful podcast to check out. For more from me, you can head to claretonte.com. You can also head over to me on Instagram at claretonte. And you can head to Sug over to me on Instagram at claretonte, and you can head to Suggestible Podcast, which comes out every Thursday. That's my other show with things to watch, read, and listen to. It's like a little update every week from two married friends who

often argue and have very different tastes in things. So that comes out every Thursday. I do that with James Clement, otherwise known as Mr. Sunday Movies. Okay. Thank you to Rock Hollings for editing this week's episode and I will see you back here next Friday. Okay. Lots of love. Bye.