In this week's episode of "If You Knew Me," host Jamie Yuenger presents a captivating interview with Tonje Thoresen, a multi-talented woman whose life took unexpected turns.
The show is transitioning to an interview style, and this episode provides a glimpse into Tonje's extraordinary journey.
Tonje, originally from Norway, went on a global exploration in her early 20s. From studying art and fashion in Berlin to immersing herself in the fashion scene of Paris, she eventually launched her own ready-to-wear fashion line. Despite the boutique's closure, Tonje seamlessly transitioned to photography, capturing political debates, sporting events, and haute couture fashion shows.
However, in 2018, Tonje's world took a dark turn. Mysterious symptoms, including migraines, heart issues, and leg pains, plagued her. By 2020, an abrupt and life-altering event unfolded in her brain, leading to the permanent loss of her eyesight. The subsequent life-saving operation marked the beginning of a challenging journey, during which Tonje spent one and a half years learning to navigate life without vision
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Produced by Jamie Yuenger and Piet Hurkmans. Our show’s musical intro and outro is taken from the track “Thursday” by the independent artist Nick Takénobu Ogawa. You can listen and support his music on bandcamp here.
Other music in this episode is by Blue Dot Sessions
Hosted on Acast. See acast.com/privacy for more information.
Jamie: [00:00:00] Hi, I'm Jamie Yuenger, and this is If You Knew Me, a podcast about the inner lives of women. I'm really glad to be back with all of you. We took an unexpected hiatus in September. This monthly podcast is a passion project, so sometimes other bread and butter life events require our full attention.
In any case, it's really wonderful to share this space with you again. If you're new to the show, this podcast is our attempt to bypass all the pretense and pretending that we do in life and get into the real stuff of what it means to be human. In past episodes, our show style was first person storytelling.
So I'd interview a woman about something deeply personal and then the final edited piece that you heard on the show was that woman telling her story in her own voice, layered with music. We're transitioning to an interview style show. And that's what you'll hear today. This week we hear from Tonje Thoresen.
Tonje was born in Norway, but she couldn't wait to explore the [00:01:00] world.
In her early 20s, she left Norway for Berlin to study art and fashion. And then she was off to Paris. She loved the fashion that she found on the streets of Paris. She fell in love with design. And to pay the bills, she worked as a model for well known houses like Dior and Chanel. In 1997, she decided to open her own ready to wear fashion line, a little boutique in a chic corner of Paris.
Eventually, and a little bit disappointed, she had to close the shop, but she rather quickly turned her attention to photography. She was a natural with a camera, and eventually she started documenting political debates, sporting events, and haute couture fashion shows.
It was a really exciting time for Tonje, but then out of the blue in 2018, her world started to dim, quite literally. She started experiencing strange symptoms like migraines, heart issues, leg pains, and toothaches. None of the doctors that she saw could [00:02:00] pinpoint a problem. Two years later, in 2020, something suddenly exploded in her brain.
The doctors couldn't operate quickly enough and Tonya lost her eyesight permanently and completely. She had a life saving operation in the summer of 2020 and then she remained unconscious in the hospital for three months. After she awoke, she spent one and a half years learning the skills that she needed to live without her sight.
Here is my interview with Tonje
Tonje the first thing I always, like, ask people is if I, if I knew you, if I really knew you, more than just the two times that we've gotten to talk,
what would you tell me?
Tonje: if you really knew me, I, I would tell you, if I did not know you yet, I would tell you that I have lost my sight.
if I meet somebody, I normally, I take their hand and I say, or I say that, listen, I, I lost my sight.
[00:03:00] And, uh, if you talk to me, please mention my name and tell me who you are, and, uh, I would love to speak to you. Um, but since, since I cannot see you, it would be good if I know that you're talking to me and, um, Sometimes I always say a little bit more. It depends on who I meet, um, and in which situation it is. If it's on the street, if somebody wants to try to help me, yeah, it depends completely on the situation.
Jamie: Can you tell me about Leading up to losing your sight and what was happening and how you learned of your condition?
Tonje: Well, I had like a couple of years before it happened where I felt really, I had a lot of issues. I had heart problems. I had, uh, headaches [00:04:00] and tooth aches. And for the last two months before this happened, I had very strong headaches. And I thought, because I had a lot of things to do, I thought that it was normal, but it wasn't.
I went to see many doctors, and I remember only also a year before this happened, I was lying in bed and I was going to go and be with my daughter for a week I thought I was going to die. I was like, I didn't have any energy at all. And, um, I felt so uncomfortable towards her because she was staying, you know, one week with me, one week with her father.
And, um, I didn't really get it, that it was, uh, something that I really had to check a little bit more. I only thought, or I, I, I thought, and no doctor would kind of think that it would be something like that because I had a tumor, which was, uh, it was not a bad tumor, but it is a tumor that started, [00:05:00] that I had had for very many years, apparently.
And that's, it started to press on certain issues in my brain. so that's why I got the headaches. And I also got to toothaches and I also fainted. I started to faint now and then like a year before this happened.
And then, and then, so I went on a trip with my daughter.
We were going to a friend of, uh, hers in the, in the mountains here in France and already on the train station. I was like, and we were going with the sister of her best friend. And I was lying down because I was so tired and I didn't feel well, and I had headaches. And then she took a picture of me and she sent it to her father because she saw that it was not okay.
So when we went down there, because the Covid had already started, um, I was in bed all the time, but they thought I had covid and it was not really a city with cars and people who could bring me anywhere. But it was a doctor who came and then she called her father who [00:06:00] came and picked me up and he brought me back to Paris and I was into several hospitals.
And then the third one, uh, saw what it was because they did a picture of the brain,
but then it had all ready, it was a huge pressure inside my brain, so they had to wait to operate. So I lost my sight before I got operated because it was also kind of a haematoma who had exploded and it was quite serious.
And the thing was, Jamie, that, I did not know where I was.one friend of mine came to see me and, uh, I thought I was still in the mountains. I was in another world because I was three months inconsent after this started to happen. And I thought I was at home and I, or I thought I was several places and I thought that I could just get up and go home
Jamie: you remember the moment that you lost your sight?
Tonje: no, not really in a way, but my brain started to [00:07:00] send me pictures, I think, to kind of, you know, to support me. So I, I didn't know that I had lost my sight. I know that I also had a lot of medications, but they asked me, my friends asked me regularly, can you see this? Can you see this? And I, I was kind of in another space.
It was very, very, very strange.
Jamie: And how were you feeling at that time? I mean, being disoriented, having people ask you all these questions. I mean, were you terrified? Like, can you describe the emotions that were going on
Tonje: Yes. I was terrified because I did not sit, understand the situation in the hospitals. And, uh, they had tied me up after the operation, because it would've been very serious if I would've walked. When you lose your sight, you lose a lot of your balance. So they had tied me up so that I would not walk because it was dangerous.
I could have fallen down. I didn't really know that I've, I've heard about that [00:08:00] afterwards with my friend friends has told me about it. I remember another different version that was very, very different and, um, I lost a lot of kilos because I didn't accept the food that they gave me and a lot of medications sometimes they wanted to give me.
I said no. And also tests and things like that. I got very, very strict
Jamie: and what was your feeling? Are you thinking about being strict like that? Like what was happening for you and how you were making those decisions for yourself in this situation?
Tonje: I was completely, I'm a very private person, and the fact that I all of a sudden was put up like this made me in a way explode of anger. And I did not want to accept anything that I didn't like. And I thought that they were so intruding into my life. So I refused many things and I, it was, uh, it was a kind of a battlefield for me, [00:09:00] Jamie.
Jamie: and you're, I don't know if this is relevant, but your daughter was somewhere in all of this time and space. So Did your mind go to how you can mother her and the relationship with her or was it just something else for you?
Tonje: She was a very important issue in my consciousness and I, I always thought I had to protect her. I thought that people was going to take her away in a way from me
she was there almost every day. And in the dream, I mean in the, my consciousness, I was like, had to protect her. They wanted to kind of take her away from me. And she has told me that I called her by another name and I told her stories that was, uh, quite, quite scary and strange.
And, uh, when I was in a lot of pain, she told me that she went up into my bed to, to hold me so that I get, would get calmer. So I stopped, stopped [00:10:00] to to, to scream. And uh, one night, uh, she had asked me, do you want me to stay, mom? Do you want me to stay tonight? And then I told her, Yes, you should stay, but don't tell it to anybody and you will see when the night comes that you will see animals that you have never seen before.
So it was like a, kind of, a really, really strange world. And I told her things that, you know, she got quite shocked to hear.
Jamie: That seems really emotional for you.
Tonje: Yeah. Mm-hmm.
Jamie: Why, why is that?
because I was completely like almost, I feel like I was, between life and death, Can you explain just so people understand, um, you know, actually the state of your condition? Like, how much of your sight you have lost. I know there's degrees and at what point you had sort of stabilized [00:11:00] to the status that you're at now with your sight.
Tonje: I have lost, uh, all of my sight. I am completely blind. I cannot see. And um, I have never seen a face since I lost it. Since then, since I started to understand that I had lost it, I feel very much alone in a way because I haven't seen any faces since then. And, uh, since I was a very visual visual person before, it's very different.
It's like starting another life.
Jamie: How long was the period from when Your daughter's friends, made this photo to, I guess you went into the hospital and then how long were you in? the surgery and what did they do? And then how long were you in recovery?
Tonje: I stayed in the hospital for, it was my daughter who took the picture of me and sent it to her father. And um, I stayed in the hospital when he brought me back, like 10 days before they operated me. And then I stayed in that first [00:12:00] hospital for five weeks tied up and then they sent me to a recovery hospital, another one
and the third hospital I went to was a hospital where I kind of, um, they had another relationship to helping people with visual loss. the way they treated me there was the best way to kind of accept when I understood it, I was thinking of ending my life. And then I understood that through humor and through a lot of courage that some of the teachers gave me. And also as my daughter came to see me once a week, it gave me a lot of hope to hear her voice was like being in heaven again.
And to say, like you told me, like indirectly, uh, this will, this will be okay. You will make it. so I could say that all in all, it took about a half a year, after the operation where I took the decision, of still live and to do [00:13:00] something with my other senses. and also use the capacities I have through languages and the, as you say in French, you know, the things you knew how know, how to do, like teaching maybe in photography, you know, like I was thinking about all my competencies that I have
Jamie: so yeah, let's, transition to that. So talk to me about the life you had before if you can give us a picture of your professional life, your social life, you know where you are in your career, what you did for work. so that people can kind of understand what this meant for you.
Tonje: I love to work. I've always loved to do things I'm an educated fashion designer, a tailor a couple of years when I arrived to Paris, after doing my education in Berlin, I worked as a model to also be able to pay the rent here. And then I started after I got my daughter in a long way in fashion.
We [00:14:00] also had her own shop and her own company, but it stopped quite soon. I, I started to photo, photograph, but I've always photographed. I also made a book that somebody offered me to make because I was having a meeting with her as a photographer, and then I told her that I. Also can, you know that my profession was, you know, also making patterns and to, to sew. And, uh, she wanted to make a book with me about Couture Vintage, about the vintage, like a little bit like the Mad Men, uh, you know, the fifties and the sixties patterns, original patterns from them that I all reconstructed so that they would be able, so that women today could make them.
And that it would be something that it's, um, very nice. And, uh, as a photographer, I worked for political debates between, politics between France and Germany. I photographed fashion shows for the houses for Patrice Stable [00:15:00] We did Jean Paul Gaultier, Christian Dior, Menswear, Dries van Noten, a Belgian designer, and um, uh, Giambattista Valli. And um, I also covered the, uh, French Open Tennis tournament Roland-Garros since 2012. So, uh, and I also did portraits for, um, for people who wanted to have portraits because I love to meet people and to photograph them and to, Give them, um, the possibility to have a portrait that shows the most important thing about them when it comes to using them for communications and things like that. To show a little bit more about the person than just a portrait like their soul and their, uh, real face.
Jamie: So your, world was, very [00:16:00] visual and colorful.
Tonje: Yes, it was.
Jamie: When you
think of that time now, ; how does it feel now to look back on that, era of your life?
Tonje: Well, I still have some grieving going on, like the tennis tournament, uh, because uh, it was the most difficult and the most exciting event I did once a year. I loved, it was a really huge passion for me to photograph it. But at the same time, I know that through the photography and these, events, I have kind of said goodbye in a way.
And I know that I could use other things that I've learned through, through those events and through those years of work and use them, still continue to use them. you know, when people come and ask me now, because I know that some photographers are blind and even has made films, but I'm not really [00:17:00] into going back to where I were, because that's not possible.
It's not possible for me at all. I want to go in another direction and learn new things.
Jamie: So, I want to push in a little bit to more of you talking about grief because I think this is such a universal thing for so many people for different reasons. And I think it's something people can really connect with as like, the loss of something.
Tonje: and so I just was wondering if you could, speak about, what is it that you grieve? what is still happening for you, whatever you kind of released and let go, and what is hard for you to, move through?
I used to work on my own for the last years, the photography, I used to work on my own. I never worked for anybody. I mean, I worked with the photographer for the fashion shows and I also worked for, you know, for the, [00:18:00] the politic, um, events and all that. But I was my own boss and I was organizing everything and I was independent.
And that loss has been very, very hard be kind of forced to ask for help. And to not give, being able to give so much back or to be able to give anything back. That is my huge, that was my biggest loss actually, because I don't like to be dependent on others. I do not like that. But I have learned a lot, a lot about it.
And I think that one day I will be quite able to do much more on my own. But it's
something which also intrudes my intimacy many times, I think. And that's a huge, something which is very, very, uncomfortable. Hmm.
Jamie: do you mean sex? What do you mean?
Tonje: No, [00:19:00] no, I mean that I have to kind of ask for help for many things. you know, like to ask if I have spots on my dress or if I have, you know, it's like intimacy. You say that in French, I don't know. You know, when it comes to my,home, you know, my bathroom, uh, it's like to talk about certain things that you never really share with other people to be able to know what's going on, what I have done, kind of, which is quite difficult.
Jamie: I'm so, surprised to hear that the thing you feel the most loss of over is sort of independence and how that relates to privacy and intimacy. Because I thought the biggest loss would be your actual sight, the visuals, the seeing colors, the seeing faces. But you're telling me something different.
Am I understanding that right?
Here I am
Tonje: Yes. But of [00:20:00] course, also the loss of my sight is enormous. It's on the same level.
Jamie: And, um, again, I, I mean, you're sharing this story and being so open in part to connect with others, who listen to your story. And although people are listening who haven't lost their sight, they've lost something else, like a million other possible things in life that we could lose. And I'm curious, how have you been dealing with this?
Tonje: I, I think it's very important. Uh, for me, I had to go through the grieving, I had to go through weeks and months where I was crying and I was like kind of wakening up. I think that phase is very, very important also to accept, to cry and to say that, you know, you don't want to, to kind of continue to live anymore.
I think it's very important to go through that, to do huge grief of what you have lost, to be able to put it [00:21:00] behind you and to continue to live and to hope again. If you just, Underestimated and don't take it seriously. And if you get like just very superficial about it, then just try to act to others that everything is okay.
I didn't do that and I think that that helped me. I think it's very important also to tell people that you're not okay and not be ashamed about it to be able to continue.
Jamie: and now, has the grief taken a different, shape, a different form for you?
Tonje: Yes. I don't have that much grief anymore. I had a tough time now, like last weekend because the, the tennis tournament was going on and I did not go there. I thought I was able to get tickets, but in a way I just wanted to go there and listen and to see my people again at the press office. But that was tough.
But besides that, I'm quite good now. I'm quite good. I still [00:22:00] have moments like a couple of times a month where I'm not good, but it's, it's much, much better. And I'm so glad that they let me move back home and to do things here at my home. I have people coming and helping me a couple of hours every day.
And I have my daughter who's here with me now and then, but she has her own life already. She's already 19 now. Uh, you know, to dare to go out and to kind of continue to live. of course in a very, very different way. It's nice. I'm very happy to have been coming from so far to be able to do this now.
I try to be proud of myself. I try to be proud and to think about everything that I have managed to do since it happened. but I do call my friends now and then to get kind of supports and the positivity I do.
Jamie: Um, what are you proud
Tonje: I'm proud of, uh, what I still manage to do, like making [00:23:00] my coffee, the old fashioned way a tiny bit. And also to, to get up, go into the shower on my own and to find the things I need to still know where my keys are and to put on the dress that I like and to still be able to put on my makeup and to go down the stairs because we don't have an elevator and we live in the third floor, uh, to be able to go down the stairs and also to try to dare to go and practice a little bit more with my cane outside.
it's many, many things that I have learned and, um, yeah. I tell you now that I'm proud, but I, I try to tell it to myself as often as I can when it, when it's necessary. Hmm. That's what I do.
Jamie: Yeah. I think a lot of people can relate to that.
Um, talk to me about, This process of you know, you love to work and you're industrious and you you have so [00:24:00] many passions and You were kind of like a busybody I think you know and so talk to me about
when you first started kind of thinking about work and your new life and how to return to something, what were you thinking?
Tonje: First of all, I was thinking about working with music and to become a singer.
Jamie: And this was after... you had gone through some amount of recovery, I guess?
Tonje: Yes. Uh, in the beginning, when I started to wake up from my in unconsciousness, one hour was like seven hours. And I didn't have any courses because they didn't really know what to do with me. And when I managed to put on a song, a piano song, or like Beethoven, and I listened to the music, it like, threw me into the music, the world of music, and also motivating me in a way like, because I know, know that Beethoven, he lost his hearing and he still continued to work. So I told myself if he [00:25:00] did that, you will also be able to still continue to work and to do things. You have lost your sight, but you still have your hearing. You could use your ears a lot now, much more than you would have if you wouldn't have lost your sight.
Jamie: That's an amazing thing to think right after all of that happened.
And so, did you pursue any of these sort of various options you listed out?
Tonje: Yes, I, took song lessons and I also went to Germany after I got back. but it is a lot of hard work when it comes to become a singer, of course. And you need to, like, since I cannot read, I need to have a huge, huge, uh, memory skill to be able to learn the songs. But I, um, I had like song lessons two or three times a month, and it gave me a lot.
And it taught me also a lot about the muscles, you know, how you work your vocals, and also about the [00:26:00] breathing. it was a little bit also like a high level athlete, the way they work, the singers, you know, to really work on their voices and to, to make that as a profession. So it's a very, very long way to go, but I thought it was very, very, for me, relieving and it gave me much to do that
Jamie: Um, so, tell me how long it's been since you lost your sight?
Tonje: It was in 2020, the fifth of, August, I got operated. So it'll be now three years.
Jamie: And where's your imagination at this moment about what you would like to do?
Tonje: my main, idea now is that I would really work for the Paralympic Games. I would really like to work as a reporter to interview the athletes and also to give back many things that France has given me and also, Paris, what I admire about Paris to inform a tiny bit about that because [00:27:00] it'll happen, it'll take place in Paris in one year.
I think because through that I would really like to give hope to other families and other athletes and people who are handicapped to start and take a decision of making something that they're able to do, but they don't dare to do it. And to therefore, when I would interview the athletes, also ask them, Discreetly, if they want to answer, of course, the question, what made them take the decision to go that far?
to take the courage to go into sport and really do that as a work
Jamie: That sounds really inspiring, Tonje, that line of work.
Tonje: I would love to do that.
Jamie: Um, I'm really curious
what's your strategy? What's your path there?
Tonje: My path is a little bit, I think that everything can be possible. But at the same time, I know that I would need a team, you know, and people that [00:28:00] would trust me and have in, in my capacities. So, but I will try to see how it could be possible to find somebody who really would find it good and important to have a kind of reporter like me, because of course, I cannot just go ahead and do this on my own.
I would need a tiny little team to be with me and do it. So, yeah. the Paralympics are already like, you know, tomorrow in a way, the Paralympic game starts on the 8th of October, uh, next year.
Jamie: And what do you think, uh, that your approach would be adding value to that?
Tonje: I think that I could make a lot of people laugh and give them a lot of hope, and also make them reflect a lot about their capacities. And, uh, if I meet a camera team or a channel who [00:29:00] knows the importance of that, that people wants to put on, you know, to hear the interviews, they, I, I need to find people who understand the value of that. So I'm trying to see who I could get in touch with. And I have been contacting a couple of people, but there were no answer. But I think some also a little bit like an attitude that I have gotten after this. It's like, well, if they don't, if it doesn't happen, it wasn't meant to be. And, uh, I think, well, I'm almost sure that I will find somebody I am.
Jamie: I love it. Um, knowing what you know now,
You know what people who are,have their sight are, taking for granted.
Jamie: it almost seems like you have this magical power like can you tell us? Like, what are we taking for granted, what are we missing out on [00:30:00] that we don't see, even though we have sight?
Tonje: People do not listen enough. It's few people who knows really how to listen um, I don't want to criticize this, but I think it's very important and also to enjoy good moments and also, Know that hard times are very necessary to be able to appreciate good moments.
Jamie: I wonder, you know, so much of fashion and, and photography and, um, yeah, the world you were really in before is about beauty and. That can be defined in many ways and I wonder you could just talk to me about what you think is beautiful now and if what you think is beautiful has changed
Tonje: Yes. The smelling is very nice. The listening is very nice. And also the touching, the touching to recognize [00:31:00] and also to guess what things are and to guess. Also the timing. Sometimes when I've walked for a long day with a friend of mine, I always say to her or to him, I said, how long have we walked? You know, like, to kind of guess.
And also quite much enjoying that. I'm getting to be like the big Ben, you know, I know the time without checking my clock or anything or asking. It's a little bit, I know really how to measure time now five minutes or three and a half and then, uh, I walked the La Parisian, it's like a woman's walk against breast cancer here in Paris with very good friend of mine.
And then afterwards I said, uh, how long did we walk? How many kilometers? And then I said, please, please don't say anything. I'll guess. And I said, 8.1. And she said, we walked 8.3. It's like these kinda things are like something that I [00:32:00] really love to do. And,
Tonje: and, uh, I go much more into the sounds and the ambiance and also to the kindness and also Into what I feel and what I can, you know, remark, like when I go outside, I feel all of a sudden when the sun comes out because I feel it. And also I feel when the rain is coming before it comes, the sensitivity and I use, much more the other senses and the herring a lot also to know where I am and also to know that I'm safe and, um, yeah.
And the taste of course food and uh, to guess what I have when I'm eating.
In a way, I thought that this was meant to be that I lost my sight. For me, it's the only answer about what happened because it gave me the possibility [00:33:00] to understand what I'm capable to do and what I can do and what I have learned until now in life. And, uh, it gives me a new chapter, an interesting chapter in my life be very, very interesting.
Jamie: I'm so glad that we met.
Jamie: well thank you so much. It's very nice that you wanted to interview me.
Thanks so much for listening to this week's episode. Tonje Thoresen is a photographer, designer, and journalist. She lives in Paris. Before we go, let me say that I'd love to stay in touch. We send out a really beautiful newsletter about once a month to learn about Tonya and to sign up for our newsletter.
Just look for links in the show notes. And if you like this show, please take a moment and share this episode with a friend. It helps us spread the word. What also helps is leaving a rating or a review on your podcast app. This episode and all of our work is supported by our incredible patrons on Patreon and our League of Women.
Our League members include Fredda Herz Brown, Carrie [00:34:00] Ahern, Christine Shook, Sister Monica Clare, Dawn Roode, Elizabeth Doerr, Kara Pass, and Karen McNeill. This podcast is produced by me, Jamie Younger, and my husband, Piet Hurkmans. Thanks so much for listening to If You Knew Me. We'll be back with you around November 1st.