Norwegian author and professor Jan Grue joins Zibby to discuss his latest book, I Live a Life Like Yours, which was originally published in Norway in 2018. They talk about how Jan was inspired to write the book after reviewing medical and bureaucratic files on his childhood that painted a very different picture than his happy memories, and shares how he went about reconciling the two. Zibby and Jan’s conversation also touches on the differences in how those with disabilities are treated in the U.S. and in Norway, as well as the importance of simply being kind to everyone you encounter.

Transcript:

Zibby Owens: Welcome, Jan. Thank you so much for coming on “Moms Don’t Have Time to Read Books” to discuss I Live a Life Like Yours: A Memoir.

Jan Grue: Thank you. The book is here now. So great.

Zibby: Very exciting. You are such a beautiful writer. I’m sure you know this, but maybe it will be nice to hear. Your prose, the way you write, it’s so poetic and lyrical and just gorgeous. I just wanted to start with that. I was so impressed and riveted and brought in by the style of your writing, not to mention your amazing story.

Jan: Thank you. Thank you so much.

Zibby: Bravo for that. Would you mind telling listeners a little bit about your story and your memoir, why you wrote this, and the main themes it was about?

Jan: Sure, I’ll give it a try. Probably, the place to start is that I’m a wheelchair user. I was born with muscular dystrophy. I remember a very happy childhood. I did have a very happy childhood. The reason why I wrote this book — I wrote it for maybe ten years. It’s one of those books that took a long time to find its fate. The real capitalizing event was a little while after I became a father when my parents asked me whether I wanted to take over their archive of papers from my childhood. I said yes. My mother came by my office at the university with about three or four feet of papers. These were letters that they’d written, documents they’d saved, really everything that documented their interactions with doctors, with bureaucracies documenting all the work they had to do during my childhood. I sat down and I read all those papers all the way through. That was something of a shock because that described a childhood very, very different from the one I remembered. That childhood was all about my diagnosis, my condition, my limitations, and my very poor prospects for the future. The book is really my attempt to try to reconcile those two stories, the one I remember and the one that the medical bureaucracy remembers, very different stories.

Zibby: Wow. How long did it take you to go through all those papers? I feel like they would’ve arrived on my desk and I would’ve stayed up for three days trying to get through it all.

Jan: It took a long while. The strange thing is that I did remember some of the stuff in those pages, visits to go and see doctors when I was very young, but also holidays where the wheelchair van never appeared, where nothing was as promised, and then, of course, the document of how my parents had to tried to arrange things, had succeeded sometimes, had made their complaints afterwards. I got to see the story surrounding my childhood in many ways, the way that the world saw me, perhaps, and saw us as a family.

Zibby: One of the most moving scenes was when you asked your parents, how was it for them as parents of you? Was it difficult? How they responded and how emotional and the struggle to capture it all, tell me about that moment.

Jan: The thing we had to acknowledge to each other was there was always something. That something was an immense amount of work. Of course, you know better than I do, but having children is a lot of work in any case. What they faced was something different because there were so many struggles with various agencies that were supposed to be there to help. Of course, they did help sometimes. Also, there was this constant fight to claim our rights and to try and make things work and to try and secure a happy childhood for me and for my sister.

Zibby: Even the image, you start off in the beginning by saying how people you run into who you used to know as a child are surprised that you’re around.

Jan: That did happen to me quite a few times. I’m sure it was a strange experience for them as well. For me, it was really an extensional shock. Okay, that was what people expected back then.

Zibby: The misdiagnosis, that was another huge turning point. What was that like? Your whole life you had believed one thing. Then suddenly, it was disproven.

Jan: That speaks to advances in medical science. The time I was first diagnosed, they were working from muscle biopsies and really very crude categories. Then, of course, came the age of genetic testing. A lot of the old categories became broken up into hundreds of new ones. That diagnosis, I thought of as a pretty essential part of myself with a poor prognosis and everything. Then discovering that this can’t be right somehow — I was not expected to be able to walk at the age of twenty. I’m still walking at the age of forty. At some point in my early twenties, I realized that something was off in those projections. It was a huge change and reorientation. It really was.

Zibby: When you were growing up, did you have that your prognosis was going to be in your twenties in the back of your head all the time? Was that something you consciously thought about?

Jan: Yeah, not necessarily consciously, but it was definitely something I felt and experienced. In the book, I talk about the sense of having not enough time or knowing that time is precious. I think I probably had that in common with quite a few disabled people, feeling that intense need to prove myself. Of course, those two things were really tightly connected.

Zibby: There’s this distillation of life when you have, suddenly, some sort of timeline fixed. Usually, it’s very unknown. What happens when you work backwards from that and then it’s infinitely extended? It’s such an interesting question. Now none of us knows our true diagnosis. We don’t know. How do you then live everyday life sort of in suspense of — I don’t know. This is a bigger question than the book.

Jan: It is, but it also speaks to the immense power that diagnoses have over a lot of lives. Somatic or physical diagnoses, mental, psychiatric diagnoses, these have an incredible power of determination because they tell you what story you’re supposed to live in. That’s not necessarily correct because diagnoses are incredibly crude in many ways. They can’t capture very much about the life. Yet they hold this power over us.

Zibby: True. It goes back to cognitive behavioral therapy where it’s like your thoughts control your feelings. If your thought is that this is fact, then you’re going to feel and act a certain way.

Jan: If somebody puts a label on you, then at some point, you’re going to have to relate to that.

Zibby: I loved how you tracked the relationship between you and your parents and then, of course, you and your wife and your son over time and how all of those are almost like a sine curve kind of waving up and down over time. When you broke your ankle, how you had to move back in and they had to start the caregiving from scratch and how demoralizing that must have felt, what was that period of time like?

Jan: That was not a good time in my life. That felt like the last and possibly lowest point before I would say things really turned around. I stayed in their house, in my childhood home, for about a month while recovering. Then after that, it felt, in one way, like the only way to go was up. I got a PhD fellowship. I started writing school and started writing things. Some of them eventually made their way into this book. It was a very strange time because it felt like one of those turning points where things could’ve also taken a turn for the worst. You never know. Statistically speaking, I’m one of the exceptions. The numbers are terrible in Norway and in the US. It’s something like one in twenty wheelchair users, perhaps, has a job.

Zibby: Wow. What we were saying a minute or two ago about time — sorry, I’m flipping through because there were so many quotes. I’m trying to give a sense of how amazing your writing is. This isn’t your experience with being a father, but there’s more quotes you have on time, which are amazing. You said, “Time with an infant is pure kairos. I am writing after one and a half years as a father. It is a long now. The moment stretches out and swallows the horizon.” I just loved that because it’s true. The time sometimes feels completely endless. This was my favorite part in the whole book. You gave a really vivid description of what it takes for you to get ready in the morning and how you have to allocate a lot of time. You broke it down step by step on what your morning routine has become and everything. You said, “I cannot hurry. This is a sobering bit of evidence in my case and a crucial factor, a gigantic boulder in the middle of the road. I cannot hurry to the subway because my wheelchair can only go the speed that it goes. I cannot run. If I leave five minutes late from my home, I will arrive five minutes late at my destination. I cannot hurry to the bathroom. If I try to walk faster than my normal speed, I trip and fall. Time is inelastic. I require the time that I require.” I just loved that. It’s beautifully written, A, but just such an important message. You require the time you require. It seems so basic, and yet it’s a life-shifting philosophy.

Jan: I’m really glad you picked out that passage because it’s one of the things I really worked out, trying to give a sense of what the world looks like when you have a particular kind of body, when you have certain physical limitations. It changes everything. It changes your being in the world. In doing so, it changes the world itself.

Zibby: Wow. I remember — maybe this is oversharing. When I was nursing, you have to pump for a certain amount of time when you’re not with your kid. I went to this wedding. I was like, I have to pump for ten minutes so I can survive the rest of the night. I go into the wedding trailer at the place. I start pumping. Everyone starts banging on the door. Now I’m causing this whole big line. I’m like, oh, god, I need time to speed up. I need this ten minutes to go faster. Then I was like, ten minutes is going to be ten minutes. No matter what I do, I cannot make this go any faster. All I can do is change the way I think about it. The more I stress and sweat and feel all that anxiety, it’s not making the time go any faster.

Jan: I totally get that. I’ve talked about this a lot with my wife who’s, of course, also a writer. Her experience of pregnancy, childbirth, and early motherhood, there’s a lot there in terms of bodily vulnerability and that sense of just having to, in some cases, just surrender to those constraints because there really is no other option.

Zibby: I don’t mean to elevate my silly nursing story to your being in a wheelchair. The point is that time is something we can’t really mess with even though we think we can.

Jan: I think it’s important to remember that even though one thing is not like the other, there are points of connection. Those points of connection are incredibly important to remember. Also, because disability often gets very isolated as a topic, we forget that it’s really about aspects of human vulnerability that reach all of us in various forms.

Zibby: I think it’s so easy for people to just be so afraid of the other. It’s an admission to people, to themselves, that this could happen to them. It’s a reminder that I think people can’t necessarily cope with sometimes, certain people at least. The shorthand is not to deal with it at all and forget that — what do you mean? You’re not different. I’m not different because I’m sitting down right now than I was two seconds ago when I was standing up.

Jan: You’re absolutely right. The philosopher talks about objection, about that intense fear and revulsion that you feel in yourself, but that you then project onto someone else. That someone else is often someone with a disability, with an illness, someone that you can really put all those scary feelings into.

Zibby: I have a very close friend with ALS. She talks in a computer now with her eyes. Over time, her friends who visit have dropped off. We don’t live in the same place anymore, but it’s so easy to just not pay the visit. It’s so easy to say, no, no, but nothing has changed. She’s hilarious and amazing. Nothing’s changed. I have the best time. It doesn’t matter now. I feel passionately about this whole thing. People being intolerant to anybody in any situation is just abhorrent to me. So tell me a little bit more about the writing side of your life and your academia, which is so important to you, and how you decided now’s the time to bring this book out into the world and all of that, how all of that revolves in your life.

Jan: That’s been a strange journey. I started out publishing some collections of short stories for an audience of four readers because that’s what short stories are like these days. They were mostly speculative fiction, which is science fiction without the hard math, which is good for me. I still think I learned something from that just in the sense of trying to imagine different worlds and different ways of looking at the world. Of course, as you pointed out, there’s quite a lot about time in the book and the shape of time and different ways of experiencing time. I wrote some experimental fiction in that vein dealing with those topics and wrote a novel and then started work on this book after that when I felt that I’d maybe built up some experience with the craft of writing. It felt like I needed that experience in order to deal with these topics. This was obviously a very important book for me to get right. Then it turned out that it became this strange mixture of different genres. One book that was really important for me in my writing was The Argonauts by Maggie Nelson. It’s a wonderful poetic, academic book about embodiment as well. I learned from her that if I want to put academic references and academic quotes into a book that’s supposed to be more poetic, then I can. I just need to select the right quotes. Academia doesn’t have to be dry. It doesn’t have to create distance. If you find just the right observation, then it has all the power of good poetry. I try to combine those things.

Zibby: Interesting. I started off by saying it felt very much like a poem. That’s definitely the vibe it gives off to the reader, the lay reader if you will. What are you doing now? Now that you have this out, what are you thinking next? Do you want to continue pursuing this type of writing? Do you want to continue sharing? Do you like having a back-and-forth relationship with the reader? How are you seeing your output in the future?

Jan: Speaking of time, I’m kind of speaking to you from three years in the future because my book came out in Norwegian in 2018. The translation takes time. Since the book came out in Norway, I have a lot of really conversations with readers, letters, messages. It was really a wonderful process. Then I wound up writing a new book which out in Norway this week.

Zibby: Oh, no way. Oh, my gosh.

Jan: It’s really true. This new book is almost a counter book and a more political book dealing with different stories about disability. I’m definitely going to continue in this vein. I’m drawing on US disability in my work and in my writing. Norway is an interesting contrast because we have a wonderful welfare state compared with you guys. We have not had all of the, I would say, cultural space to think and talk about disability that the US has had. That’s one of the reasons why I bring California and Berkeley and the Bay Area into the book, because I learned so much from people working there. That cultural moment seems to be happening in Norway these days. A lot of disabled people are entering into the public sphere. The conversation seems to be changing in many ways. It’s a very interesting moment to be a part of.

Zibby: Here too in the United States. I also recently interviewed a woman named Mallory Weggemann who is in a wheelchair because of — she went and got shot from a doctor, and it paralyzed her when she was training for the Olympics. Now she’s actually a Paralympic gold medalist and all this stuff. She wrote a book called Limitless. A lot of the themes are the same, overcoming. Her message was so positive. Not to say yours is not. She’s like, I was meant to be here because I need to tell everybody all this stuff. Anyway, you should read it. It’s really good.

Jan: Absolutely. I will.

Zibby: If you want me to connect you, I’d be happy to put you guys in touch. Maybe you could do an event together or something really cool. She’s wonderful. She’s really great. My husband’s now actually helping with her documentary because he’s a producer. She’s great. I noticed in The New York Times review of your book that people are calling attention to your dressing style. How did you feel about that? How did you feel? Of all the things.

Jan: It’s gratifying. I do make a point of it because I think it’s something a lot of disabled people have experience with. You really need to think about your appearance because it’s so easy to become discredited if anything is off. There are a lot of people who are wheelchair users who are also homeless, and so you get a stereotype. You get stigma. It becomes quite important to navigate that stigma in different ways. Rosemaire Garland-Thomson, the disability scholar, talks about this a lot in her wonderful book called Staring: How We Look, about how being a stare-ee, someone who is socially legitimate to stare it, that person will always be conscious of being the object of other people’s stares and will have to negotiate that in some way. For me, thinking about clothes and trying to find clothes that actually fit me, which is not an easy task, became something that I wanted to bring into the book as a way of talking about looks, appearances, and all of those negotiations as well.

Zibby: I wonder if in the book Stare they talk about fame. That’s another reason why people stare at people. You can look different, or you can just be so well-known. I wonder if the effect on the stare-ee is the same for the different reasons.

Jan: I’m not trying to come off as horrible here, but I have been picked out on the street for having written books, for having appeared in the media, and so now I never know. It could be that kind of attention. It could be the other kind of attention. I can’t be sure. It’s an interesting kind of ambiguity to live with these days for however long this micro-celebrity in Norway lasts.

Zibby: I feel like here, people give celebrities a really hard time. Oh, yeah, it’s hard for you. I’m really sorry. Cry me a river. But there is something to not being able to move through the world in a way — I don’t know. I’m not a celebrity. I have no idea.

Jan: I can imagine. In my case, it felt like I’m going to get people’s attention whatever I do, so it may as well be positive attention.

Zibby: For you, go milk it. Why not? It’s great. Do you have any advice for aspiring authors?

Jan: That’s a great question. The answer is always simple and incredibly difficult. It’s to write. For me, the transformative year was a writing school here in Oslo where I had to write stuff I would never have written on my own, to just try everything, different voices, different angles, different genres, different exercises, and then discovering my voice along the way. I’d written a lot of academic texts before, but this was something completely different. I discovered that writing in a different way will also sometimes allow you to write about different topics. It really is a process of discovering what is within you.

Zibby: Wow, that’s great. Jan, thank you so much. This was so interesting. Again, your book was absolutely beautiful. I thank you for spending the time with me today.

Jan: Thank you so much for having me.

Zibby: Thank you. Take care.

Jan: Buh-bye.

Zibby: Buh-bye.

I LIVE A LIFE LIKE YOURS by Jan Grue

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