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Rosie Waterland and Jamila Rizvi's broken brains

Speaker 1 Hey ladies, a heads up that this episode talks about suicide. Please take care and we'll leave some resources in the show notes for you in case you need them. If you need urgent help, Lifeline is always available at 13 11 14. Yumi In 2021, Rosie Waterland was lying in the back of an ambulance. She'd just attempted to take her own life. In the ambulance with her were paramedics and her close friend, Jamila Rizvi, who remembers the whole thing really clearly. Jamila She gave this speech and it was a speech, it was not talking. It was like the most extraordinary thing I've ever heard about how our health system fails people with mental illness. I still look back and go, why didn't you record it? But I was thinking about other things, but it was extraordinary. And the ambos were like, yeah, that's true. Rosie I mean, it was very funny and I do wish it had been recorded. But that also does go to show how quickly that state of mind switches because that night... Jamila You were so coherent. Yumi Just hours earlier, Rosie had felt so hopeless that she couldn't see a way to continue living. Rosie I was like throwing up fluoro green something and I panicked because I did not want to die then. And so I called Jamila and got some help and was able to give a very coherent, eloquent speech to the ambulance staff about a whole lot of things. But that's how quickly it changes. It's like just flips on a dime. It was incredibly real. Yumi Rosie Waterland is a writer, podcaster and comedian. After a traumatic childhood, she's been diagnosed with PTSD and depression and has spent sometimes months at a time in psychiatric wards. Her dear friend Jamila Rizvi is also a woman with an excess of job titles. She's an author, a television commentator and a social policy expert who wears the hell out of a power suit. Jamila was diagnosed with a one in a million brain tumour seven years ago. The pair have what they call broken brains. Their brains are broken for different reasons but they share having to deal with the effects of this brokenness. Rosie There isn't a rainbow at the end of all of this. Yumi For many people with chronic illness, there's no miraculous recovery, no happily ever after. Instead, for Rosie and Jamila and others like them, there's learning how to live in the imperfect in-between space. Jamila I really wanted to give people something of what it's like to find some peace when you're still in it and there isn't going to be a way out. Yumi And so the pair put together their broken, brilliant brains and wrote a book. Rosie All these books are usually those airport title books about resilience or getting through or triumph. And we really wanted to be real in this book about the fact that if you are going to be dealing with this always, that's hard. But at the same time, if this is the reality, how do you move forward in some kind of productive way? Jamila I will say, so we're four years past deadline on this book. Oh, me! Yumi Four years late, the book is a tribute to the healing power of friendship and what it means to carry on and make meaning among ongoing physical and mental chaos. It's also about how the world around Jamila and Rosie sees their illnesses so differently and what the rest of society views as worthy of our sympathy. I'm Yumi Stynes, ladies, we need to talk about living with a broken brain with Jamila Rizvi and Rosie Waterland. Jamila I was working at Mamma Mia at the time. Yumi The first time Jamila and Rosie came across each other, Jamila was manning the inbox of what was, at the time, a glorified blog site. Jamila There weren't many of us. And so a lot of our content came through a blind inbox. We had an inbox and an address that you could send your work to if you wanted to pitch a story. So it wasn't a job I relished, having to check the inbox. And then one day I remember checking it and Rosie had sent an article from her blog. And I read the piece and was like, whoa. And so I went through the blog and I read everything on the blog. And I wrote back and I think we published a handful of pieces before we just said, just come on in, please. Rosie I asked if I could intern. Yes. I was working at a call centre at the time. I'd been to drama school for three years. I had an acting degree and then a creative writing degree. So I'd studied for six years and I was qualified to work in a call centre. And I asked if I could intern and I think I did for maybe a week. And they said, we want to offer you a job. Yeah. So Jamila was my very first professional writing boss. Jamila And my memory is you were shy and quiet. You were hysterical because you've always been so funny. But we almost had to pull it out of you. You were quite intimidated, I think, by that environment. Rosie Yeah. I had really at that point shut myself off from the world a lot. I had a life where I stayed in my room. I left my room, went to the call centre where I would talk to people but not have to see them. And often I would just hang up the calls. I won't tell you where I was working. And so I went from that to this office filled with like very outgoing, extroverted women. And I was doing a proper real job, I thought, for the first time. And I was petrified and very quiet. But Jam really played a huge role in bringing me out of my shell. Yumi You know what? It's so interesting that all these years later you're here talking about this because that key moment of being seen by somebody, to have somebody who's a professional woman look at you and say, your work is legit, and kind of elevate you into her professional space and make you feel safe and welcome, that is a huge moment of visibility for you. Rosie Oh, absolutely. I often get asked what was one of the major transformative moments in your career. But I would say even in my life it was Jamila bringing me into Mamma Mia, Jamila hiring me and giving me a job. Because at that point I had not been doing well mentally and I had pretty much accepted I will live in my bedroom and work in a call centre and that's what I'll do. Rosie I had a very difficult, traumatic, neglectful childhood. My mum took off when I was three weeks old and left me in an incredibly dangerous environment. And if you don't have safe caregivers around you that age, your neural pathways don't develop in the right way. I mean, there are parts of my brain that are overdeveloped compared to others, there are parts that are underdeveloped. That means in my adult years I'm dealing with the subsequent symptoms that it caused of trauma and PTSD. Yumi Jamila's brain is broken for different reasons. Jamila So I have an acquired brain injury. Yumi We've spoken to Jamila Rizvi before on Ladies We Need To Talk about her brain tumour diagnosis when she was 31 and a mum to a two-year-old. We'll put a link to that episode in the show notes. Jamila I had two brain surgeries trying to remove it and it would grow back aggressively. It's not possible to remove the whole thing. And then I had radiation treatment to shrink what was left. That was almost six years ago, that radiation treatment, and so far so good. But that has left me with really extensive disabilities because I do have that brain injury now as a result of what doctors had to do to try and get it out. Yumi The idea of writing a book came when Jamila visited Rosie in the psych ward. Jamila had just been through her first surgery. Rosie I was doing pretty badly mentally and Jamila came to visit me. And we were having lunch and I think she was reaching out for anyone who understood what it felt like to just not be in control of your brain. And she started telling me about how she'd been doing and her symptoms. I said, oh, I have that one. Like, cognitive issues? Oh, me too. Brain fog? Brain fog, memory issues. I have a lot of executive function issues. I have a lot of hormonal issues to do with my thyroid. I have a whole bunch of things that were similar. And I think we were surprised because Jamila had come to me for advice on how to handle something difficult mentally. And as she was describing what she was going through, we realised there was a lot more similarities to what we were going to, including and what shocked us both the most was she told me the mortality rate for people with her particular kind of tumour. And it was almost the same as the mortality rate for people with PTSD and trauma like mine, usually due to suicide. And I think we, although coming from very different kinds of chronic conditions, found an enormous amount of connection in that conversation, not just through realising we had similar symptoms, but just through realising what it felt like to feel like you've just completely lost any sort of autonomy over your physical and mental self. Yumi While talking about the treatments for their broken brains, Jamila and Rosie realised that the world around them responded in very different ways to their illnesses. Rosie Jamila told me, you know, everyone's been so incredible. Like the first week I was diagnosed, within a few days, there was 11 frozen lasagnas in our freezer because everyone rallied around. And I said, oh, I've never got a lasagna. And when I leave this hospital, I probably won't have one waiting for me when I get home. Yumi Filling in the picture of what it's like to have two different types of brain injury, Jamila has this diagnosis, the village rallies, and by the end of one week, you've got 11 lasagnas in the freezer. Jamila Yeah. And I love lasagna. Yumi Me too. Jamila I was like 11! It was still a lot. It was still a lot. My husband started a lasagna tally and he would rate out of five for cheesiness and tomato sauce. Yumi Yeah, but I think it's a great metric, right, because it's a sign of people stepping up and going, oh, what can I do to help? And they want to send their love over in a physical form. Jamila And what people consider serious. Yes. Like people went, oh, my God, you've got a brain tumour. And the reaction was intense. And the reaction we have is to bring food, right? Yeah. And we don't take what Rosie's been through as seriously. Yumi Yeah. So, Rosie, the absence of lasagnas, what does that tell you? Rosie I think, you know, it says the obvious. What I think a lot of us know is that issues of mental health aren't often treated legitimately as issues of physical health. The first thing I say in the book is in my darker, sort of quieter moments late at night, I sometimes wish I had a brain tumour like Chimilla's because then I could point to something on a scan and say to people, look, here's proof. Here's what's wrong with me. Here is proof. Rosie Ironically, though, over the course of writing the book and researching the book, that's what helped me learn and understand that when it comes to the physiology of the brain, my brain is actually different. I think the difference between the two of us is a lot of people do deep down think that mine's a choice. Chimilla can't not have a brain tumour. But if I work hard enough or if I maybe stop indulging in it so much or if I maybe, you know, go for a walk in the sunshine, if I work harder, I can change it. And I won't lie and say that I don't think that sometimes also. Yumi Do you picture your trauma as a scar? Rosie No. Yumi No. Rosie I try to now when we submitted the first draft of this book, we had a psychologist do a read of it for us, you know, like a sensitivity read to make sure we'd written things correctly. And she came back to me about my very first chapter in which I just sort of have always referred to what I have as a series of symptoms because of trauma. And I would refer to it as like a mental illness. And she came back to me and said, you know, there are a lot of people who now don't like to use the word illness for this because they think that this is a perfectly reasonable response to very extraordinary distressing events. There are a lot of people now who refer to it as traumatic brain injury because it is. I just said, you know what, I'm happy to call it whatever helps anybody understand it better. I have found the last couple of years that saying traumatic brain injury does seem to drive the point home a little more. And I do think that's because it helps others picture it as something physical. Yumi Jamila, when you met your husband, Jeremy, you were in great health. Jamila Yeah, I was. Yumi And how did the in sickness part affect your relationship? Jamila Yeah. You know, when we got married, we wrote our own vows and we got rid of that. And I remember thinking, maybe I should have kept that in. Make sure he can't go anywhere. I have been very fortunate in that my husband is steely in his determination and very steady and has been that way from the very start and has had his own moments, I know, but has not really shown them to me. To me, he has shown a face of total confidence that I would be fine. But nonetheless, sickness changes a relationship. Jamila And I had always, rightly or wrongly, thought about relationships in three parts. That you have that part at the beginning where you can't keep your hands off each other and any minute spent apart is wrong and you have to be on the phone at least. And we did long distance for the first year and a half. And I remember like physically feeling like, where is he kind of feelings. And it's that really passionate stage. And then for us at least, the next stage was that going into the kind of hustle and bustle of parenting. And like it's fun, but you're also trying to survive and trying to figure out how to make it all fit together and work. And then I sort of would look at, you know, what I remember my grandparents being like. And I'll call it in the book, the fluffy slipper kind of love where theirs was a partnership of, you know, 50 years or more. And there was so much care. And Jeremy and I went from the first one to the third one in less than two years. It was just fast. And I feel like we barely dipped our toes in the water of the middle one. And I did find that really hard for, I would say, several years and probably still do a bit now. Yumi Jamila's brain tumour has, of course, changed so much about her relationship with her husband, even down to how they fight. Jamila Because my body doesn't produce cortisol anymore, when I experience stress, I have to take more cortisol or it can become very dangerous. It can become a medical emergency quite quickly. And we had a giant fight about six months ago, like a proper fight that we had not had something like that in a very long time. And I remember Jez just stormed out and I heard the car turn on. I was like, okay, he's just going to get out of here for a bit and get some space. And then I heard the car turn off and he comes back upstairs and goes, take some more cortisol. And he goes back down again. And I just thought, yeah, okay, he has to pause, angry lover for a moment just to go back into care. And that is hard. It's a lot of hats and they don't always fit neatly. Yumi Jamila's illness and multiple surgeries were a massive blow to her confidence. Jamila Most people would not know when they see me that I am unwell and most of the time I feel pretty good. But there was a good two years there of consistent acute unwellness where I barely had a month where I wasn't either in surgery or in immediate recovery or in radiation treatment. I didn't even want to be close to people because I felt so physically vulnerable. Yumi That sense of fragility crept into the way that Jamila parented as well. Jamila Like I actually have more grief, I think, about those years around my little boy was two and a half when I got sick. And he was four and a half at the end of the sort of acute phase. And I was quite nervous around him because toddlers are really unpredictable. You know, with all the love in the world, he did break my nose after the first surgery and he didn't mean to. Like Spider-Man was just on his way and flying through the air and hit me. But it had big consequences because of what I'd just been through. And so I had this sort of tentativeness where, of course, I still wanted to hug my little boy and all of that. But I was anxious all the time. And I was constantly worried that something was going to go wrong or something was going to hurt me or I was going to... I watch some friends who are more elderly now and I watch the way they walk when we're out in public and that nervousness of like the hustle and bustle of a city, for example, or unexpected steps. And that's how I felt at 31, 32 for a really long time. Yumi In late 2023, Rosie Waterland received a message on Instagram from a cute boy called James who knew her from her podcast. It was a slow courting process at first, but then they were messaging all the time. They met IRL and promptly fell in love. And then at the start of 2024, Rosie's mum died by suicide. For Rosie, who'd been dealing with her mum's erratic moods, often cruel treatment, followed by bursts of love and repeated suicide attempts throughout her life, her reaction was a complex mixture of relief and anger and grief. We talk about this push and pull in depth in an earlier episode of Ladies We Need To Talk with Rosie. We'll link to that one in the show notes as well. In the middle of all the dead parent stuff, Rosie and James were just getting to know each other. Rosie This is the first relationship I've ever had where I have realised that allowing love and allowing yourself to be cared for can facilitate healing rather than having to be completely healed before you can let yourself be loved. I talk in the book about that kind of Instagram meme sort of notion of like, oh, having trouble dating, like it's because you don't love yourself yet. And as soon as you love yourself, like you'll just be pushing people off with a stick. Yumi Rosie's childhood trauma meant she never let herself be vulnerable enough to pursue a relationship. Rosie And you know, what does that mean? Like you're going to be 95 scrolling through Tinder, like finally ready because how long does it take? What if you never love yourself? And with James, I sort of came to the realisation that through this book, actually, the brain is elastic and they can be rewired. And one of the best ways to help facilitate that kind of healing that the brain and the body needs after significant trauma is through the hormone oxytocin. And the best way to get that into yourself is through human connection. I mean, I'm lucky that James is basically an emotionally intelligent unicorn, a very safe, patient, lovely person who came along at just the right time and has been the perfect person to help me through that process. But it was a huge revelation for me to realise things can go the opposite way to what I always thought. Yumi Jamila, you write about the lingering fear that comes from not knowing what the future will bring. Yeah. And you're such an A type. You arrived 10 minutes early today. Yes. Rosie, you were late. 10 minutes late. Yeah, that's us. But you know, of course you want to know what's coming. How do you live in ambiguity? Jamila That, I think, has taken me the longest to figure out. I'm probably not entirely there yet, but I'm better than I was. I had a scan last week and I don't have the results yet. Yumi Okay. Jamila And I'm okay. I'm mostly not thinking about it. Emphasis on mostly. I'm mostly able now to go, that's okay. Thinking about that right now doesn't change what the outcome is. Some scientist in the lab knows what the outcome is. And I'll get that soon. And when it happens, we will deal with it. But it took a long time for me to feel anything close to safe. Probably because of just how often it grew back at the start. Like, it just felt like I never got a break. Like, it was so relentless and so hard on the body. And I got used to the process of going in and being told it's growing back again. Like, that was the normal. And so it's taken probably 20 scans to get used to the idea of, okay, for the last however many, it's been okay. So it's either been shrinking or the same. So I think I've learned to let it be there and feel very hopeful that it just stays put. Doesn't do anything. Yumi Jamila can't guarantee what her future looks like. And similarly, Rosie is in a good place today. But she knows that she might be pulled back to dark places like that night where she ended up in the ambulance. Rosie I know it will make people uncomfortable to hear me say this. But I cannot guarantee that I won't take my own life at some point. A huge symptom that I deal with, with this trauma, when things are particularly bad, is very persistent, significant suicidal ideation. It's something that I've worked very hard to understand how to manage and to understand how my brain works. And I understand at this stage that when I do get those incredibly intrusive thoughts and feelings, it's a sign that my brain needs some attention. And that something's not right. Because the brain that's telling you to hurt yourself is not a well brain. Yumi For Rosie, it's like there's two different versions of herself. Rosie The person I was in those moments, I don't even feel like that person. I can't even comprehend what that person was thinking and why they were doing that. Because when you're not feeling that desperate, you cannot imagine what it feels like to be feeling that desperate. So a lot of ambiguity lies for me in the fact that I feel fantastic today. I feel good. But I thought for a long time that the whole point of my treatment was getting to a place where there are no symptoms anymore. There are no triggers anymore. Like I just go through my life with my trauma being a thing that I had to deal with once and now I don't. But there will always be triggers. You can't control the world around you. I will always have symptoms. And that means there is a very real possibility that there could be a moment in which my brain takes me to a place that I can't get back from. Yumi Jamila, how does it feel to hear Rosie talk about suicide? Jamila I've been pretty good through this tour and felt pretty steady. I find that really hard. Rosie Yeah, I just got teary for the first time too. Jamila And that's not to, you know, I think as people who love people who have either attempted suicide or had suicidal ideation, it's really easy to project your own stuff onto them. And to be like, no, no, well I need you to be okay. So I'm trying to be very cautious because the selfish part of you goes, don't even talk about that because I need you to be okay. Yumi For both of you with these experiences of broken brains, do you find that the world at large wants there to be a kind of redemption or a healing bow tied around your story? Like, yeah, you experienced terrible trauma as a child, but therapy and antidepressants and ding, you're better or radiation therapy and surgery and wow, fireworks, you're here. There's a need in us and I mean the world at large to see you as curable or cured. Do you see that, Rosie? Rosie There's a need in me. That was my first memoir, Yumi. Ended like that. My first memoir, which was 10 years ago. So, you know, I was like 27 when it came out. I really thought, yes, I'm doing really well. I was at the time. My career had gone gangbusters, thanks in part to Jamila lifting me up in that way. I had this book deal and I wrote this book where it ended with me kind of being a phoenix rising from the ashes and finally being well. And I think I really badly needed to believe that that was the case, too. And, you know, I crashed pretty significantly a few times after that because it took me a long time to realize and part of writing Broken Brains has helped me realize the last, you know, five years that it took us. Is that this is something I'll be dealing with for the rest of my life. Rosie I really very much thought that there's an end game when it comes to chronic ill health and it's being cured. It's getting healed. It takes an enormous amount of very confronting grief to finally realize that, no, there is no end point to this. These are symptoms I will be dealing with for the rest of my life. And I know Jamila dealt with the same. I mean, Jamila is probably I call her my, you know, most capable grown up friend. This is the most type A, completely motivated, hardworking person I've ever met in my entire life. And having been close to her while she's gone through the journey of her tumor, it's been difficult as her friend to watch her grapple with that also, that your capacity in what you can achieve and what you thought you would be able to achieve and how you thought you would be able to your life changes very significantly. And that's hard. Jamila Yeah, I think there's a grieving process that goes with that. And, you know, I think we've both found through that grieving process, you know, they talk about the stages of grief. It's not like you tick through them in a linear way. I certainly bounced around in all of them, I think, to finally land on acceptance. I went backwards and forwards for a really long time. It was interesting, my husband got an early read of the book, mostly because I was like, you're in this a lot. You should make sure you're happy with it. One of the things that really shocked him was where I ended the story, which personally I sort of ended the story a few years back. And he was like, why? Like, he's a lawyer. He's like, why did not it end today? Because that is the end of where we are. Part of the reason I did that was I think what Rosie and I tried to do in this book is bring the knowledge that we've gained of having lived with these things for a while and where we've come to. But we also tried to communicate what it's like to be in it, like in the middle of it. Yumi What have you learnt from each other's broken brains that you can share with us? Jamila Oh, wow. So much. I think I have experienced quite extended periods of mental ill health as well that have been connected to my experience of being sick. And I spent a lot of that time shouting at myself from within my head to snap out of it. And a lot of like self-flaggilation maybe of like, what's wrong? Just stop it. Nothing's happening right now. Just stop it. And I think Rosie's been essential in helping me to stop being so mad at myself because it actually makes it worse. And to allow that to be what it is rather than to think I can boss my way out of it maybe. Yumi And Rosie, what have you learnt? Rosie Jamila, I think, really did struggle with coming to accept the significant effect it was having on her life. And I watched her go from a place of trying to push through and continue living the way she had been pre-illness. Jamila realised a lot quicker than I did in the last seven years the adjustments she would need to make in her life and the realistic expectations she would need to adjust to in order to start living her life in the most productive way moving forward. I've been in treatment since I was 17, so for 20 years now. And I only started to learn those lessons as I watched Jamila go through what she was going through. And I realised I needed to stop pushing back against my illness and I needed to start accepting that it was a part of my life. And I needed to start shifting to an attitude of maintenance and ongoing management rather than denial unless there's some kind of end cure. And it was watching Jamila do that that really helped me. And that's been probably the most transformative thing in all of my treatment was getting to a place where I realised that because it completely shifted the way I approach treating my mental health. So I have Jamila to thank for that. Yumi If you could make one wish for each other, for your futures, what would it be? Jamila Marry James. I love him. Rosie That's the plan, I guess. Yeah. We can cut that out of the film. I mean, selfishly, I would wish that we worked together more and again because this has been just a gift. A gift especially for me working on this. I don't think it's any coincidence, although I think Penguin would have preferred we not go four years over deadline. The time we have spent doing this, the extended time working this closely with Jamila and being incredibly vulnerable in the way we've had to be with each other. I'm at the healthiest I've ever been mentally. Jamila There's so much in this book I wouldn't have been brave enough to say without. Rosie, I'm still a bit anxious that people are going to read it and it's going to be really embarrassing. Yumi What's life if you're not embarrassed? Jamila I will definitely be embarrassed. Yumi Thank you so much for coming in today. I've loved this conversation so much. We love your broken brains and your beautiful hearts. Jamila Thanks. Thank you. Thank you for holding space for it all. Yumi Hey, if you have a mate who loves lasagna and great podcasts, please share this episode with them. And while you're at it, give us a five star rating. It keeps me employed. Yumi And ladies, before I leave you, I wanted to share an email we got about our episode on the sandwich generation. Do you remember that one about being a carer for your elderly parent while you've got kids? We got heaps of amazing feedback and it warms our tired, weary hearts. So I can't read them all, but I wanted to take a moment to read a bit of what Lisa, a single mum of three neurodiverse kids, wrote. When I was 31, my mum was diagnosed with early onset dementia. Mum was 61. She is now 69 and her dementia has progressed to her having seven days a week care. I fought hard to get her on the NDIS and now manage a team of seven supporting mum each day. I organise and facilitate her care daily in addition to working four days a week as a teacher. My father, who I've had a fluctuating relationship with, lives in another state. He now too has early onset dementia, aged only 64. Yumi That is two out of two parents with dementia as I navigate raising three kids 100% of the time alone, aged 39. To say the journey is challenging is to tell you that Donald Trump may be only slightly deranged. Even taking time away from care needs to write this email is huge. I am determined to have boundaries and make sure there are moments and even days of self-care in my daily life. My kids are healthy and for the most part happy. This is the trophy in life I most want. I want to say thank you for your podcast. I absolutely love it. You accompany me in many car trips and even in the shower whenever I grab moments to myself. Yumi This podcast was produced on the lands of the Gundungurra and Gadigal peoples. Ladies We Need To Talk is mixed by Ann-Marie de Bettencor. It's produced by Elsa Silberstein. Supervising Producer is Tamar Cranswick and our Executive Producer is Alex Lollback. This series was created by Claudine Ryan.