This interview was originally published through .
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Holly Newson: I'm Holly Newson. Welcome to Audible Sessions, a place where we delve into the books, careers and lives of authors and creators. Lucy Edwards has become well-known for her YouTube and TikTok videos about life as a blind person, highlighting what she's able to do and where our society falls short. You might also know her as the fabulous ginger model in the Pantene adverts. Now, she's written a book about her story of losing her sight and regaining her happiness called . And in this interview, she told me how her guide dog, Olga, changed her life, how many people will feel grief similar to what she experienced with sight loss, and how a simple act at her wedding had people reaching out to say how liberated they felt. To start with, I ask Lucy why she wanted to write the book.
Lucy Edwards: For all of the little Lucies out there that don't have a voice, that haven't had a voice. In the nearly 11 years that I've been completely blind for, I didn't really feel when I first lost my vision like I had a role model that could kind of just tell me everything was going to be okay and that sight loss wasn't the end of me. I did feel like it was the end of me for a time and, yeah, I just wanted this to be a guide, knowing that, you know, me out there living life to the fullest was okay. I'm not broken. I'm, in fact, just blind. I just wanted to make sure that people had a voice, really, and that their grief shouldn't be shoved under the rug. And knowing that it's a process, I think, that it ebbs and flows as well, is a really healthy way to look at it.
HN: So, you sort of said there, but who would you say that this book is for?
LE: Anyone struggling with grief right now. Maybe you've lost a loved one. Maybe you are going through a really turbulent time with your mental health. Maybe you have just acquired a disability like I did. Maybe you've broken up with a spouse and you're grieving what once was, and you don't know a way forward right now. It feels like there's loads of dark clouds above you, but it will be okay. And that's what my guide does. It shows through my personal experience of sight loss and blindness how I did grow up overnight and suddenly I was an adult in a teenage body. Very, very quickly, I learned how to live again as blind Lucy. And you are living, probably currently, in a body that you don't recognise because you're so grief-stricken, but you will recognise it again. I promise you.
HN: And do you think the grief that you experienced when you lost your sight and for that sighted life, do you think that's applicable to all sorts of grief?
LE: I do. I really do. I think I'm not just blind Lucy. I'm blind, not broken. And that's what my grief centres around, the loss of that organ that kind of defined who I was for 17 years of my life. And now I was in a body I don't recognise. But I think I have also grieved pets. I've also grieved having a new guide dog and moving on in that sense. You know, you grieve your teenage years and then go, "Oh, my gosh. I'm suddenly in the world of work." I think one grieves so much, and it's about navigating those different paths. And I'm speaking to everyone who deals with grief, and I think we all do.
HN: Yeah, definitely. And so how did you kind of cope with the isolation that you say that you felt as you lost your sight and when you completely lost it at 17?
LE: I felt sick with dread when I became blind. There's a really poignant part of my book where I recount the moment that I lost my vision, and I never have before because I haven't felt like I can truly articulate it in the way that I wrote it down. I don't know. I think words are so powerful. And truly just being one with my thoughts, it was kind of like a diary entry, I felt. And I remember just really it being quite cathartic and me bursting into tears. And I think since I've written it down in the book, I feel differently about how I see that moment in time. It's definitely always going to be with me forever, and I do carry that part of my life when the doctor told me that I wasn't going to really ever have vision again, and "How many fingers am I holding up?" When the consultant comes in, in his jeans on a Saturday morning, it's never good.
I had to learn how to live again completely overnight. There was no one that could tell me that it was necessarily going to be okay. It was all an unknown, and I felt sick. I remember actually really vividly not being able to make a cup of tea and thinking, "Oh, my gosh. Am I going to burn myself? I'm 17. I learned how to make a cup of tea years ago.”
But I always say, you know, sitting here right now, I'm 11 years old in relative terms with all the new experiences that I've had because I'm almost 11 years blind. So, it is really the way I view my life now, that I'm living in this body, that I am learning to love myself again, and I have.
HN: And you write about rebellious hope. Will you tell me what that is and when you've experienced it?
LE: I love that you quote that. Rebellious hope, for me, when I first heard it was Deborah James. I actually worked with her mom on a Tesco shoot and I remember thinking, "Oh, my gosh. Who is this amazing woman?" And she was talking about her daughter, at the time now, now late Dame Deborah James, with such amazing awe and inspiration. And I thought, "Wow. Like, if I can have just a piece of what Deborah calls rebellious hope." And basically, throughout all of the odds of Deborah, she was – and still is – a massive inspiration to me.
And I know sometimes we say, "Oh, inspiration's such an annoying word." You know, the late Stella Young coined the term inspiration porn. And it kind of is seen as kind of a negative connotation when talking about disability and long-term health conditions. But I think for me, rebellious hope and inspiration kind of go all in one, that you have to kind of have hope against everything, have hope in the bad days, hope when you're feeling like you've hit a wall and you can't get back up again. Rebellious hope is the hope that, even when you don't feel like there's hope anymore, you feel like you're rebelling against yourself even and the confines of your mind in some ways. And yeah, when I heard it, it was very applicable to my situation.
HN: And you say that we also live multiple truths. I wondered what the multiple truths that you're living are.
LE: So, my multiple truths, which I talk about in the book, are I can love blindness, but I can also hate blindness. And it's really given me a self-acceptance that I didn't know that I could truly have, even saying those two statements in the same sentence. I think that it's true that loving my blindness and loving myself has made me who I am, but I can also say, "Well, it was also my reality that I hate being blind right now in this moment, and it doesn't make loving blindness any less real either."
So, I think it was something that I kind of delved into when I first had a psychology session about my blindness and I think I was thinking of things very black-and-white. And I love ACT therapy, which is acceptance and commitment therapy, where I'm seeing all of the negative thoughts on my bus. And some of them have costumes of witches and gremlins, and those gremlins can go to the back of my bus. And maybe sometimes I'm really hating blindness. Even though the gremlin's at the back of my bus, I'm still carrying him with me, like, that thought about, "Oh, I just want to be sighted today" or "I hate myself because I can't see whether the baked beans are timed for this amount in the microwave." I can have those moments and those thoughts, but I can also think, "Right, I'm just gonna put my little fairy to the front of my bus and think, ‘Oh actually, I really love being blind because it's made me have the voice to change and make a difference.’” And I can also think, "Oh yeah, not having my eyesight anymore makes me have the vision to change this world."
HN: Yeah. It's so true. And I thought it was interesting what you said earlier about inspiration. And there's a lot of thought around saying that. Say someone's lost a leg and therefore, you know, for getting up every day, some people would say they're an inspiration, that not being something that most people with a disability want to hear. They're just getting on and they're just living their lives. But you said, obviously, that the other people have been inspirational for you. So, how would you say those two things balance against each other? When is it okay for someone to be an inspiration, and when is it not the time and the place?
LE: Yeah. Love that question. I think there definitely is a distinction between them. I think if you are looking up to a hero or a heroine and saying, "Wow. Their achievements are next-level." Someone's won the Paralympic Games or got a gold medal or achieved a longstanding goal of theirs or is an inspiration to you because they've done something that you would love to do or achieve. Maybe they have written an article and you love what they've written or they are someone that follows your moral compass and also has your value system. You can be inspired by a thought leader.
But I think the distinction comes when we, as disabled people, are just getting out of bed and someone looks at us and goes, "Oh, I feel sorry for them." And you're an inspiration because you did just get up. We don't want to be seen as like a having a pity party for ourselves and that kind of make someone go, "Aw, I think about my life and then I think about you, and then it makes me feel so much better." And I'm like, "Okay [laughs]. Fine. Thanks. Put me down to kind of make yourself feel better.” I think that's when it's wrong.
HN: Yeah, that makes complete sense. And you write in the book how much you struggle with your mental health, particularly in those early years of blindness. But one thing that kept you going was when you got your first guide dog, Olga. So I wondered if you could tell me about Olga and the difference she made to your life.
LE: Oh, gosh. That girl. I think everyone always remembers their first guide dog or their first mobility aid. It's a shining light in a sea full of worry. I remember grabbing the harness and thinking, "This two-year-old thing is going to guide me? What?" And it was a bit of a disconnect. I was like, "How can a dog help me cross the road?" It was so weird. I have all of those questions that I ask online, like, in my own head, and I had to figure it out on the job, you know?
So, I think being with Olga has made me a better version of me. It's always been Olga and Lucy. I think that's what I wrote on the Instagram post. I wrote a massive Instagram post when she retired. It was like one of the saddest days of my life because I just think that dog got me through so many highs and lows. She went to the first day of sixth form with me. She went to my first-ever role in the BBC, my first-ever workplace. She went on countless trains reporting for Radio 4 and the BBC up and down the country, and she's just so resilient, that little thing.
And I think in the beginning, it was just me and Olga getting a loaf of bread, but then it turned into me and Olga going to Glasgow on our own or me and Olga going on a plane on our own. And because she went through the full spectrum of rehabilitating with me, no other dog will do that and be that for me in that part of my life. And I'm just so grateful that she gave me a routine, she gave me a reason to live, and she also gave me a structure and a routine to my day. She was the thing that needed me. There's so many feelings when you first lose your eyesight of, "Oh, am I a burden now to everyone around me?" But I wasn't a burden to Olga, and I never was a burden to her. She needed me to feed her. She needed me to do things for her, and then she would do things for me. And it was the ultimate team. And by all means, the rest of the people in my life didn't make me feel like a burden. But I think Olga was the ultimate just bundle of love.
HN: And so Olga is retired now, as you said. How does Olga live out her days in retirement?
LE: Snoring a lot [laughs]. Going on hour-long walks. Like, several hours in the park. We have a park near us, and she just loves rolling in the leaves. And just on my mom's bed. She lives with us, but times when I'm in London with Miss Molls here at my feet and lovely Ollie and Katrina behind me, she's definitely at home snuggling.
HN: Nice. And in terms of the members of your family who were helping you through that grief, also grieving themselves probably for the change in their lives and how much they wanted to be able to help you, how important was open communication in that time in those early years?
LE: Massive. I think for my mom and dad and my sister, it shattered their world. They speak a lot in the book, as well my now husband, Ollie, about how they felt. And I really loved their perspective because, often, grief doesn't just swallow the person who's dealing with the heartbreaking scenario, it ricochets all round your family life. And from me just not being able to feel like I wanted to get out of bed and having a tub of ice cream, I think all of them desperately, with all of their might, would rather have been me, and I know they've all said that in different circumstances.
And there was a point where all of them just wanted to do everything for me and just make it go away. There was that kind of start of the grieving process where I'd be like, "Oh, could you make me a cup of tea? Could you do this?" And then it didn't serve me in the way of making me feel like I was going to have a life of independence. Like, there was the whole interdependence-dependence argument and feeling like I was relying on them a bit too much after a while. I think it was hard to get it right. It was hard to navigate. None of us had ever dealt with or knew anyone with a disability. So, my dad would be writing lovely letters to get me funding for my first braille note, which is basically a computer that I can type braille on, which is the tactile language that I use, that then Bluetooths to my computer. But they're so expensive. And just little things like that. Like, my mom and Ollie, when I was doing my A-level studies, because I didn't know braille yet, I would dictate it all to my teaching assistant and to them. So they helped me with probably more things than the average family would, I guess. But they didn't leave my side.
I think, yeah, I don't know how to kind of quantify that time of our life, but I think there's parts of it as well that I've just blocked out because it was quite really traumatic as well.
HN: Yeah, because with all those good days and everyone helping each other, anyone knows that – well, anyone who's ever had a parent try to help them revise for a subject, you know how frustrating it can be and how you take it all out on your parent because you don't understand the maths sum, and so it's their fault. It's all them. So, anyone is going to obviously have those moments, but I'm guessing you had those in a heightened way because there's even more frustration.
LE: Yeah, because it was also my mom typing for me and me being like, "I just can't. I just don't want to type anymore." And it was like that loss, a sense of grief of like, "I could've just clicked the button." I could've just typed it myself. And I wasn't kind of in the mental head space to learn to bridge the gap, almost, for myself to learn the technology because I was so ill, but I also wanted the help. And it was such a weird time because I was just like, "I've just got to get through my A-levels. I've just got to do it." And then I had a massive crash after that. It was getting through that major part of my studies that I always was like, "Oh, I need to go to law school, so I've got to get through this." Everyone was just kind of looking to that moment.
And that's what is a massive part of grief as well. You're always like, "Oh, it'll be okay when X" or “It'll be fine when Y.” And I always used to plan stuff. And then my mom would look at that moment, that day would be lived, and then I would crash. So, she was like, "It was very tiring back then that we'd kind of always be looking to something and always in the future, never in the now." And I'd never want to live in the now because it was too painful.
HN: Whereas now in your career, you're at a point where you're able to employ some of your family members. So, I wondered, what would you say that you are like as an employer and what are they like as employees?
LE: Oh, I love this [laughs] because people say, "Oh, it's hard to work with family." But I think because the lovely part about me having gone through the grief and my disability has made us the best communicators. We've been to the ends of the earth with each other in terms of, I don't know, emotions. So, I would say I can be quite a hard taskmaster sometimes, but I think it's very lovely. We all have a voice and we all have a system of being able to tell each other when we don't like certain things. I think also we've got a very good structure.
And also, because it's my face, it's lovely that my sister can always be like, "Well, you can't post that, Ollie." Ollie being my husband. "You can't post that, Ollie. You just got love goggles today" [laughs]. "She doesn't look that good. She wouldn't want that up." And she's always my mirror, you know? So, there's always that. And also I think it is so personal working with your family. I just adore it. I love the fact that me, Ollie and Alice work really close together. It can be tough, but I think we're so honest with each other and quite blunt that it kind of doesn't matter.
HN: That honesty and that bluntness that is so important and is actually so valuable in so many relationships, how did you get to a point where you were all okay with that and everyone knew that no one's trying to offend anyone and everyone is going to be honest? And so sometimes, it's going to feel brutal, but it's all for the best.
LE: Yeah. It's an Edwards trait anyway. My dad is very like that anyway, which I love. He doesn't ever beat around the bush. I think it's made me who I am and made me have the resilience, you know? I remember he came to the first-ever meeting with me at the BBC, well, my first-ever interview. And we're coming home on the train and I'd be like, "Oh, I just don't know, Dad." And he's like, "Well, if you don't get it, then it's fine. You just gotta pick yourself back up." And I love that about him because it's like we didn't ever dwell on the bad or the fact that I possibly haven't got it or whatever. It's always just been like, "Well, you'll do better next time" or "It'll be okay."
I think that's what's made me who I am. And I think within the boundaries of still respecting each other, you've always got that sense of, like, I always know that my people are just going to tell me the truth and nothing but the truth. I've gone to the ends of the earth and the ends of my brain through no fault of my own, and they've got me through it. I don't know whether most people can say that about their family, but I realise that I'm in a very lucky position that all of them are like my best friends.
HN: We've spoken about how those early days of losing your sight were hard and how things are different and easy now, but we all know that mental health is not this linear thing. And we all go round in circles and we'll have our bad days and whatever it might be. So, I wondered, how do you know when to give yourself the push to go and do something and really force yourself out there when you're not feeling it, and when is the time when actually you need to pull back and you need to rest and you need to give yourself a break?
LE: Last year was that for me, actually. Really quite distinctly. I think it's when I make really big decisions in my career, but also personal life, like buying a house or changing management. I think, ultimately, it's when I feel within my heart that it's time to move on. But I think I only know that because of what I've been through. I always say I love my blindness because it doesn't sugarcoat anything. And I used to hate that about my blindness, by the way. I used to be like, "Can I just, you know, I have to go into a room, and everyone knows I'm blind. This is so annoying. There's no nuance here.” But now I'm just like, "Hi." I come as I am.
I think it's allowed me to think of the rest of my life in quite a clear way. I've got a lot of clarity that I didn't use to have, and I also have psychology. I always advocate for that. I know that Americans always say, "You've got to have a shrink." I think we should do that in the UK a lot of the time. I think we should just admit that we all need counselling, and I guess that's why there's apps like Headspace and Calm and stuff.
But I think it's big moments in my life where I'm like, "I could go this way, or it could go that way. It's either these reasons or those reasons.” I do pros and cons all of the time in those big decisions. And I think it's just allowed me to kind of take more risks and not be frightened of the risks, you know? Even when I went to law school but I dropped out. And notionally that seems like, "Oh, my gosh." You could think of it as, you're not carrying on with your studies and you're wasting that opportunity and different things, but I just went, "Well, no. It's not for me. It's not serving me. Thank you.” And it could be quite neutral.
Doing all of these big things within my life, they don't have to weigh me down. In a sense, I can just be like, "Well, I lost my eyesight and that was the worst thing that happened to me. And all of these different things are really big things. But they're not necessarily positive or negative because the thing that has made me and has forged my path has been the worst thing to happen and the best thing to happen to me ever." So, basically, comparing everything to blindness. It's quite extreme, but I love it that I can.
HN: And you mentioned earlier that your family have written sections in the book. What was it like for you to read what they had written or to hear what they'd written?
LE: It was beautiful. I remember crying, actually. I love the fact that they've done the audiobook themselves as well. They all went to the studio and they all recorded it. And they were like, "We feel so emotional when we recorded that." It means the world to me that they want to just say, "We love you. We're flying the flag for you," even in such a public way. It's really sweet as well because we're not really, really softy all the time. So, when they write something softy, I'm like, "Oh, guys." It's really sweet.
HN: What was it like for you narrating your audiobook?
LE: Incredible. I didn't know whether I would do it justice because I'd never read out loud in sync with someone before. So, what happened was they hired this lovely actress, and she read it out at the speed that I love to read at and I had it in my earpiece and then my headphones on top of that. And then I literally just read it, and read at exactly the same speed as her. So, I think you have to move your brain into a different kind of gear. And I think definitely there's some parts of my sighted frontal cortex or whatever that has rewired itself and made do with different parts of my brain. Definitely when I'm reading braille, I know that I feel like I'm using the same parts of my brain that I would've used to see. The body is a wonderful thing, and I just love the fact that I could do it.
HN: Did you find it emotional, like your family did doing their bits?
LE: Oh, I had to stop. Yeah, I had to stop especially on the bits where we were talking about me losing my eyesight and being in the hospital. I had to pause. And to be honest, me and my producer and the studio manager, just everyone hearing it, we all kind of teared up in that bit and we all had to stop. So, we had a five-minute break and I had a biscuit [laughs]. Makes everything better.
HN: And with audiobooks, is there anything that you love in narrators that you then were maybe like, "Ooh, if I can give that when I'm narrating," or anything like that?
LE: Ooh. I just love Stephen Fry.
HN: Popular opinion.
LE: It's a very popular opinion, but I think I remember really vividly listening to the Harry Potter books and feeling so taken away with his voice and the way that he did the different voices of the different characters. I think even though my voice is nothing like Stephen Fry's, I wanted that warmth and energy to really be with the person who was listening.
I wanted also people who are blind like me to not feel like they needed to be able to read. Because I remember when I first lost my vision, I was like, "I can't read books anymore." And when I got my Audible subscription and I listened to different voices, I was like, "Well, I don't need a physical book anymore." And a lot of people, I guess, sometimes in our community say, "Oh, well that's not reading. That's just listening." But I really wanted to get across the fact that you can be transported to a different world with someone's voice, and it is so encapsulating. And this is my true experience read out to you in my most-rawest way that I couldn't really get across in any other art form. So yeah, I loved it.
HN: Do you have favourite audiobooks that you like apart from the Harry Potter stuff because obviously, Stephen Fry's narration is—
LE: Oh, he's amazing. I think, to be honest, a lot of the time I circle round different authors. I absolutely adored Stephenie Meyer when I was younger, the Twilight books as well. I cried when they ended. They got me through so many hard times. When you transport yourself to different worlds, and The Hunger Games and fantasies like that. I think for me, I think reading real-world events wasn't serving me at that part of my life. Now, I feel like I can read more self-help books and like The Diary of a CEO and that sort of thing. I absolutely love those. And I think now I've got a bigger repertoire, but I think fantasy is where my heart sat, ultimately.
HN: And you write that we need more relationships with disabled characters in the media, and particularly some sexy disabled characters. Why do you think that is so important?
LE: It's 2024. I think at the end of the day, if people don't understand that disabled people have sex and all the same desires as everyone else – like, I lost my eyesight through no fault of my own and I have a husband. Of course I'm just going to be me, but with a lack of vision. And I think with Sex Education as well and the advent of having disabled characters on that, I think it's really transported us to a different kind of view of it. I think we're chipping away at what it means to be disabled and sexy.
Like, ultimately if we're going to have these really not very great portrayals of blind people dating or disabled people dating in the media, which I do mention in my book, it's only going to perpetuate the stereotype. And I think blind people dating other blind people or disabled people dating other disabled people, it's not always the case. And it's definitely not in my world. I always say that I'm in an inter-abled relationship. And I love it because there's parts of me that don't feel blind, and I can still say, it sounds really weird, but sometimes I don't feel like a blind woman. And other days, I do.
So, I just think we all need to see people as having different parts of themselves. I'm a blind person, but I'm also a dog mom and I'm also a wife and I'm also a redhead lady. And I have all these different attributes about me. And I think widening that discussion with the topic of sex is amazing. I was listening to this podcast on audio porn by Amazon, and I thought, "Oh, that's really good as well," because it was narrated by a visually impaired presenter. And I thought, "I feel like we're getting somewhere."
HN: I exec produced that podcast.
LE: Did you? Oh, amazing.
HN: I'm so glad you listened to it. I was going to be like, "Have you listened to Press Play, Turn On?"
LE: Yeah. Literally, I love it. I loved it.
HN: Oh, I'm so glad.
LE: Actually, one of my BBC producers sent it to me. She was like, "Luc, you need to do something like this." I was like, "This is so cool."
HN: I'm so glad you liked it. And when you and Ollie got married, when you walked down the aisle, Ollie and everyone else wore blindfolds. Why did you make that decision, and what did that mean to you?
LE: I was terrified that I would live that moment and everyone would say, "You looked beautiful." And that's not how I see beauty anymore. So, I wanted, selfishly or not, and Ollie still thinks that because it was our moment, we made it our moment, he feels rightly or wrongly, we're hoping to not cause offence with this statement, but he lives in my blind world so often that we wanted to do that for each other. And we felt like it was a very personal way for me to walk down the aisle. I also think, because I've never seen my wedding dress, I wanted Ollie to view it in exactly the same way as I did and not have any preconceived notions. That's the beauty of what having no eyesight does. You know, you're within yourself. You're in your own thoughts and feelings. And it's such a quiet moment, but it's such a poignant moment to understand who you truly are.
And I think me walking down the aisle also to “Arrival of the Birds” by The Cinematic Orchestra – it was in The Theory of Everything, which is one of my favourite films, which is about Stephen Hawking's life. I couldn't help but cry because that montage of Stephen acquiring his disability, I felt was so me. But also it's the freedom of knowing that your disability doesn't have to define you. And my dad then walked me down the aisle, and he was the only one that could see in that sense, and I thought that was also so beautiful. And then Ollie felt my dress, and I just thought, "Wow. You don't have to have vision to love doing things." I think a lot of the time, we see that traditional bride walking down the aisle, and I just didn't want that to be me.
HN: Because you're right that the moment is beautiful without the seeing of anyone. Yeah, completely. And this is probably really lame to say, but I did cry at that video on Instagram.
LE: Oh, bless you. No, it's not at all. See, this is the thing, I think that's what it evoked in people. I really do. It's a nontraditional way of saying, "Well, I still want to do things, but I want to do it my own way." And it's okay and it's all right. Nothing's going to explode by having a blindfold on, or nothing's going to happen if we want to do things differently. I got a lot of comments and a lot of direct messages like, "Oh, my gosh, Lucy. I feel like I can just have no one to my wedding or..." And then someone else was like, "Oh, I just feel like I could have my wedding at my house.” Because it's such a traditional thing that a lot of people have a lot of say on – families often like to weigh in about weddings – it kind of set so many people free. And it definitely set me and Ollie free when we made that decision, because we didn't tell anyone that it was going to happen either.
HN: I love that. Yeah, it's just celebrating your love and your togetherness, how it feels right to whoever that partnership is. I love that. And so you've written this book. You did allude that you have other projects, which maybe you can't talk about. But is there anything that you’ve kind of got in the pipeline that follows this?
LE: I do. I'm not too sure whether I can talk about it.
HN: Oh, we're seeing shakes of head in the background. How disappointing [laughs].
LE: But, yeah, it's amazing. I'm really excited.
HN: And in the meantime, everyone could obviously go and listen to your audiobook. So, thank you so much, Lucy. This has been such a pleasure.
LE: Thank you for having me, Holly.
HN: Thanks for listening to Audible Sessions. If you enjoyed this and want to hear more, search Audible Sessions on the Audible website or on the app. Blind Not Broken, written and narrated by Lucy Edwards, published by Octopus, is available to listen to on Audible now.