Jan Grue, I LIVE A LIFE LIKE YOURS: A Memoir
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[0:35]Okay, now back to this amazing podcast.
[0:37]John Groot is the author of I Live a Life Like Yours,
[0:41]a memoir.
[0:42]Jan is the author of a wide-ranging body of work-in-fiction,
[0:45]non-fiction, children's books, and academic literature,
[0:47]and is a professor at the University of Oslo.
[0:50]I Live a Life Like Yours was published in 2018 in Norway,
[0:54]where it won the Norwegian critics prize for literature,
[0:56]and was nominated to the Nordic Council Literature Prize,
[0:59]the first Norwegian non-fiction book to be so honored
[1:02]in 50 years.
[1:03]It was translated into English.
[1:05]Welcome, Jan.
[1:06]Thank you so much for coming on Momstone Have Time to Read Books
[1:09]to discuss, I Live a Life Like Yours, a memoir.
[1:12]Thank you.
[1:13]And yeah, the book is here now, so great.
[1:16]Very exciting.
[1:17]You are such a beautiful writer.
[1:20]I mean, I'm sure you know this,
[1:21]but maybe it will be nice to hear,
[1:23]but like your prose, the way you write, it's so poetic
[1:27]and lyrical and just gorgeous.
[1:30]So I just wanted to start with that.
[1:31]I was so impressed and just kind of riveted
[1:35]and brought in by the style of your writing,
[1:37]not to mention your amazing story, so.
[1:39]Thank you.
[1:40]Thank you so much.
[1:41]Bravo for that.
[1:42]Would you mind telling listeners a little bit about your story
[1:45]and your memoir, Why You wrote this,
[1:47]and the main themes it was about?
[1:50]Sure, sure.
[1:51]I'll give it a try.
[1:52]So I mean, to read the places,
[1:54]I'll start the start on a wheelchair user,
[1:56]and I was born with muscular dystrophy.
[1:59]I remember a very happy childhood.
[2:01]I did have a very happy childhood.
[2:03]The reason why I wrote this book,
[2:04]I mean, I wrote it for, I think, 10 years.
[2:07]It's one of those books that took a long time
[2:09]to find its shape.
[2:11]But the real sort of capitalizing event
[2:13]was a little while after I became father,
[2:15]when my parents asked me whether I wanted to take
[2:18]over their archive really of papers from my childhood.
[2:22]And I said, yes, and my mother came by my office
[2:25]at the university with about three or four feet of paper.
[2:29]These were letters that they'd written,
[2:31]documents they'd saved, really everything
[2:34]that documented their interaction with doctors,
[2:37]with bureaucracies, really documenting all the work
[2:40]they had to do during my childhood.
[2:42]So I sat down and I read all those papers all the way through
[2:45]and that was something of a shock.
[2:47]Because that described a childhood very, very different
[2:50]from the one I remembered that childhood was all
[2:54]about my diagnosis, my condition, my limitations,
[2:58]and really the report prospects for the future.
[3:02]And so the book is really my attempt to try to reconcile
[3:05]those two stories, the one I remember
[3:07]and the one that, you know, the medical bureaucracy,
[3:10]the members, very different stories.
[3:12]Wow.
[3:13]I must have been, I feel like how long did it take you
[3:15]to go through all those papers?
[3:16]I feel like they would have arrived on my desk
[3:18]and I would have stayed up for like three days
[3:20]trying to get through it all.
[3:21]Yeah.
[3:22]I mean, it took a long while.
[3:23]And the strength thing is that I mean,
[3:25]I did remember some of the stuff in those papers, you know,
[3:28]this is to go and see doctors when I was very young,
[3:31]but also, you know, holidays, where the Witcher then
[3:34]never appeared, where nothing was as promised.
[3:38]And then of course the letters that, you know,
[3:40]the document of how my parents had tried to rearrange things
[3:43]had succeeded sometimes and, you know, made their complaints
[3:47]afterwards.
[3:47]So I got to see really the story surrounding my childhood
[3:51]in many ways.
[3:52]And the way that they would, the way that the world saw what
[3:56]me, perhaps, and then saw us as an family.
[3:58]One of the most moving scenes was when you asked your parents
[4:02]like, how was it for them as parents of you?
[4:04]Was it difficult?
[4:05]Was it, you know, and how they responded
[4:07]and how emotional and the struggle for like to capture it
[4:10]all, like tell me about that moment?
[4:13]Yeah.
[4:13]No, I think the thing we had to sort of acknowledge
[4:16]to each other wasn't there.
[4:17]And there was always something.
[4:20]And that that something was an immense amount of work.
[4:23]And of course, me, you know, this better than I do.
[4:25]But having children is a lot of work in that case,
[4:29]what they faced was something different
[4:31]because there was such, there were so many struggles
[4:35]with various agencies that were, you know, supposed to be
[4:39]there to help.
[4:39]And of course, they did help sometimes.
[4:42]But also there was this constant fight to claim our rights
[4:45]and to try and make things work and to try and secure
[4:49]a happy childhood for me and for my sister.
[4:52]Wow.
[4:53]And even the image you start off in the beginning by saying
[4:56]how people you run into who you used to know as a child
[4:59]are like surprised that you're around.
[5:01]You know, I mean, that's like quite.
[5:02]Yeah.
[5:03]I mean, that did happen to me quite few times.
[5:05]And I'm sure it was a strange experience for them as well.
[5:10]But for me, it was a really existential shock.
[5:13]So the okay, so that was what people expected back then.
[5:16]Wow.
[5:17]And the misdiagnosis, that was another like huge sort of
[5:21]I feel like point like what was that like that you,
[5:23]your whole life you had believed one thing
[5:25]and then suddenly it was just proven.
[5:28]Yeah, I mean, that's, I mean, that speaks to advances
[5:31]in medical science, right?
[5:32]Because the time I was first diagnosed,
[5:34]they were working from muscle biopsies
[5:37]and really very crude categories.
[5:40]And then of course came the age of genetic testing.
[5:43]And a lot of the old categories became broken up
[5:45]into hundreds of new ones.
[5:47]But yeah, I mean, that that diagnosis was something I thought
[5:51]of as a pretty essential part of myself with a poor
[5:54]prognosis and everything.
[5:56]And then discovering that this can't be right somehow.
[5:59]I mean, I was not expected to be able to walk at the age of
[6:02]20.
[6:03]I'm still walking at the age of 14.
[6:05]And so at some point in my early 20s, you know,
[6:08]I realized that something was off in those projections.
[6:12]But it was a huge change and we orientation really was.
[6:16]So when you were growing up,
[6:18]did you have like that your prognosis was going to be
[6:21]in your 20s in the back of your head all the time?
[6:24]Like is that something you consciously thought about?
[6:27]Yeah, I'm not necessarily consciously,
[6:30]but it was definitely something I felt and experienced.
[6:33]And I've been in the book.
[6:36]I've talked about the sense of having not enough time or
[6:39]knowing that the time is precious.
[6:41]And then I think I probably have it in common with quite a few
[6:46]disabled people feeling that intense need to prove myself.
[6:50]So then those two things will be really tightly connected.
[6:55]Well, you know, there's this like distillation of life
[6:58]when you have suddenly some sort of, you know, timeline
[7:02]affixed, right? Usually it's very unknown.
[7:05]So what happens when you work backwards from that?
[7:08]And then it's like infinitely extended.
[7:10]Like it's such an interesting question.
[7:12]Do you still feel like because now like none of us knows
[7:15]our true diagnosis, right?
[7:17]Of course.
[7:18]So how do you then live every day life sort of in suspense of.
[7:22]I don't know. I mean, this is sort of a bigger question
[7:24]than the book, but it's you know, it is, but it also speaks to
[7:27]I think the immense power that diagnosis that have over a lot
[7:31]of our lives and their needs are I mean, so I think or physical
[7:34]diagnosis, mental, psychiatric diagnosis needs have an incredible
[7:39]power of determination because they tell you what story
[7:42]you're supposed to live in.
[7:44]And that's that's not necessarily correct because diagnosis
[7:47]are incredibly crude in many ways that they can't capture very
[7:51]much about the life.
[7:52]And yet they hold this power over us.
[7:55]Sure.
[7:56]It's almost it's like goes back to cognitive behavioral therapy,
[7:59]where it's like your thoughts control your feelings, right?
[8:01]And if your thought is that this is fact, then you're going to
[8:05]yeah, you're going to feel an act a certain way.
[8:07]But yeah, and if somebody could so label on you, then that
[8:10]at some point you're going to have to, you know, relate to that.
[8:13]But I love how you sort of tracked the relationship of your
[8:16]with between you and your parents and then of course you and
[8:19]your wife and your son like over time and how all of those
[8:22]are kind of like, you know, almost like a sign curve,
[8:24]like kind of waving up and down over time.
[8:26]And when you broke your ankle, how you had to move back in and
[8:30]they had to start the caregiving from scratch and how demoralizing
[8:34]that must have felt to you.
[8:35]What was that period of time like?
[8:38]Yeah, that was not a good time in my life.
[8:40]And that was itself like sort of the last and possibly
[8:44]lowest point before I would say things really turned around.
[8:48]As I stayed in their house in my childhood home for about a
[8:53]a month while recovering.
[8:54]And then after that, you know, but it felt one way that the
[8:58]only way to go was up.
[9:00]So I got a PhD fellowship.
[9:02]I started writing school and started writing things that
[9:05]will some of them eventually made their way into this book.
[9:08]But it was a very strange time because it felt like one of
[9:11]those starting points where things could have also taken
[9:13]a turn for the worst, you never know.
[9:16]And I know that I mean, statistically speaking, I'm one of
[9:19]the exceptions.
[9:20]I mean, it's the numbers are terrible in no way.
[9:24]I'm in the U.S.
[9:24]It's something like one in one in 20 winter users perhaps has
[9:28]a job.
[9:29]Wow.
[9:30]Well, what we were saying a minute or two ago about time
[9:32]and sorry, I'm flipping through because there were so many
[9:34]quotes tonight just want to make sure I'm trying to give a
[9:36]sense of how amazing you're writing is.
[9:37]But this is your experience with being a father, but there's
[9:41]more quotes you have on time, which are amazing.
[9:42]But you said time with an infant is pure chiris.
[9:45]I am writing after one and a half years as a father.
[9:48]It is a long now the moment stretches out and swallows the
[9:52]horizon.
[9:53]I just kind of loved that because it's true.
[9:55]It's like the time sometimes feels completely endless.
[9:58]But this was I think my favorite part.
[10:00]in the whole book. When you gave a really vivid description of what it takes for you to get ready
[10:05]in the morning and how you have to allocate a lot of time and you broke it down step by step on what
[10:10]your morning routine has become and everything. And you said, I cannot hurry. This is a sobering
[10:16]bit of evidence in my case and a crucial factor, a gigantic boulder in the middle of the road.
[10:21]I cannot hurry to the subway because my wheelchair can only go this speed that it goes.
[10:25]I cannot run. If I leave five minutes late from my home, I will arrive five minutes late
[10:30]at my destination. I cannot hurry to the bathroom. If I try to walk faster than my normal speed,
[10:35]I trip and fall. Time is inelastic. I require the time that I require. I just love that. I mean,
[10:43]it's beautifully written A, but just such an important message. I mean, sometimes you just have to,
[10:50]like we all just require the time you require. It seems like so basic and yet it's like a
[10:55]life-shifting philosophy. Right. I'm really glad you picked out that passage because it's one of
[11:02]the things I really work that try and give a sense of what the world looks like when you have a
[11:08]particular kind of body. When you have certain physical limitations, it changes everything. It
[11:14]changes your being in the world and then doing so it changes the world itself.
[11:19]Wow. I remember maybe this is like oversharing, but when I was
[11:22]nursing, you have to like pump for a certain amount of time, like when you're not with your kid,
[11:27]right? I went to this wedding and I was like, well, I have to pump for 10 minutes so I can like,
[11:32]you know, survive the rest of the night. So I go into like the wedding trailer right at the place
[11:37]and I start pumping and everyone starts banging on the door, right? Like now I'm causing this whole
[11:40]big line. And I'm like, oh, I got any time to speed up. I need this 10 minutes to go faster.
[11:44]But then I was like, 10 minutes is going to be 10 minutes. No matter what I do, I cannot make this
[11:50]go any faster. So all I can do is change the way I think about it. But the more I like stress and
[11:55]sweat and like feel like all that anxiety, it's not making the time go any any faster. So I don't
[12:00]know. No, but I totally get that. I mean, they talked about this a lot with my with my wife who
[12:07]is also a writer and the experiences of a very experience of pregnancy, childbirth and
[12:15]early motherhoods. There's a lot there in terms of bodily vulnerability and then that sense of
[12:21]just having to in some cases just surrender to those constraints because there is there is
[12:26]really the water option. Yeah. And I don't mean to like, you know, elevate my silly nursing story
[12:32]to your, you know, being in a wheelchair. But you know, but I think the point is that time is,
[12:37]time is something we can't really mess with even though we think we can't like, you know, yeah,
[12:41]yeah. And I think it's important to remember that even though one thing is not like the other,
[12:45]there are, you know, points of connection. And those points of connection are incredibly important to
[12:50]remember also because disability often gets very isolated as a topic. And we forget that it's really
[12:56]about well, also aspects of human vulnerability that that reach all of us in in various forms.
[13:05]Well, I think it's so easy for people to just be so afraid of the other or it's like,
[13:11]it's an admission to people to themselves that this, you know, this could happen to them. And like,
[13:15]you know, it's a reminder that I think people can't necessarily cope with sometimes certain people,
[13:21]at least. And so, you know, the shorthand is not to deal with it at all. Forget that like,
[13:27]what do you mean? Like, we're all the, like, you're not different. Like, I'm not different because I'm
[13:30]sitting down right now than I was two seconds ago and I was standing up. So anyway,
[13:35]now you're absolutely right. I mean, the philosophy of Julia Christopher talks about
[13:39]objection about that sort of intense fear and revolution that you feel all in yourself,
[13:44]but then you then project on to someone else. And that someone else is often someone
[13:51]with a disability, with an illness, someone that you can really put all those, you know,
[13:56]scary feelings into. Yeah. I have a very close friend with ALS. And, you know, over time,
[14:01]you know, she talks in a computer now with her eyes. And, you know, over time, her friends who
[14:06]visit have like dropped off, right? Like, and I still, I don't go, you know, she doesn't,
[14:10]we don't live in the same place anymore. But, you know, it's so easy to just not pay the visit.
[14:14]Right. Yeah. No easy to say. Like, no, no, but like, we have like, nothing has changed. We
[14:20]have them, she's hilarious and amazing. Like, nothing's changed. And so, I have the best time doesn't
[14:24]matter now. Anyway, so I feel sort of passionately about this whole thing. And, you know,
[14:31]and people being intolerant to anybody in any situation is just, you know, important to me. So,
[14:36]anyway. So, tell me a little bit more about the writing side of your life and your, you know,
[14:41]academia, which is so important to you. And like, how you decided now is the time to sort of
[14:48]bring this book out into the world and all of that, how all of that sort of revolves in your life.
[14:53]Yeah. I mean, that's been a strange journey too. I mean, I started out publishing some collections
[14:58]of short stories for an audience of like four readers because that's what short stories are like these
[15:03]days. And they were mostly speculative fiction, which is, you know, science fiction without the
[15:08]the hard math, which is a good for me. But I still think I learned something from that just in
[15:13]a sense of trying to imagine different worlds and the different ways of looking at the worlds.
[15:18]And of course, as you pointed out, there's quite a lot about time in the book.
[15:23]And the shape of time and different ways of experiencing time. And so I wrote some experiment
[15:27]for fiction in that vein, dealing with those topics and wrote a novel. And then started work on
[15:33]on this book after that when I felt that I maybe built up some experience with the crafts
[15:40]of writing because it felt like I needed that experience in order to deal with with these topics.
[15:44]So, this was, you know, obviously a very important book for me to get right. But then it turned out
[15:52]it became the strange mixture of different genres. I mean, one book that was really important to me
[15:57]in my writing was The Argonauts by Megan Nelson. It's just, it's a wonderful poetic academic
[16:04]book about embodiment as well. And I learned from her that if I want to put academic references
[16:10]and academic quotes into a more book that's supposed to be more poetic, then I can. I just need
[16:16]to select the right quote. Academia doesn't have to be dry. It doesn't have to create distance.
[16:23]If it's fine just the right observation, then it has, you know, all the power of good poetry.
[16:28]Well, I tried to combine those things.
[16:31]Interesting. Yeah, no. I mean, I started off by saying it felt very much like a poem. It felt,
[16:36]you know, that's definitely the vibe. It gives off to the reader, the lay reader, if you will.
[16:41]So what are you doing now? Like, do you want to, now that you have this out, what are you
[16:46]thinking next? Like, do you want to continue pursuing this type of writing? Do you want to continue
[16:51]sharing? Like, do you like having like a back and forth relationship with the reader versus putting,
[16:58]you know, how is, how are you seeing your output sort of in the future?
[17:02]Yeah. Well, I mean, speaking of time, I mean, I'm kind of speaking to you from three years in the
[17:07]future because my book came out in Norwegian in 2018. Oh, okay. So it's, so that the
[17:12]translation takes time. So it's since the book came out in Norway. I have a lot of really interesting
[17:18]conversations with readers, letters, messages that was really a wonderful process. And then I won't
[17:23]found out writing a new book, which is caused that play out in Norway this week. Oh, no way.
[17:28]Oh, my gosh. Yeah, no, it's, it's really, really, really true. And then this new book is,
[17:32]I would say almost a counterbook and a more political book dealing with different stories
[17:38]about disability. So yeah, I'm definitely going to continue in this, in this vein. I'm drawing on
[17:46]US disability studies in my work and in my, my writing. And Norway is an interesting contrast
[17:53]because I mean, we have a wonderful welfare state compared with you guys. We have not had all of
[18:00]I would say cultural space to think and talk about disability that the US has had and that that's
[18:06]I'm that's one of the reasons why I bring California and Berkeley and the Bay Area into the book,
[18:11]because I learned so much from from people working there. But that cultural moment seems to
[18:17]be happening in our way these days. So a lot of disabled people are entering into the public
[18:23]sphere and the conversation seems to be be changing in many ways. And so it's a very interesting
[18:29]here, too. I mean, in the United States, I mean, I also recently interviewed a woman named Mallory
[18:33]Wegman who is in a wheelchair because of a, she went and got a shot from a doctor and it paralyzed
[18:39]her when she was training for the Olympics. And now she's actually a Paralympic,
[18:42]you know, gold medalist and all this stuff. And she wrote a book called Limitless, but a lot of
[18:46]the themes are are the same in terms, you know, overcoming and what you have to, you know,
[18:50]but her message was so positive, not to say yours is not. I just mean, like, her message was like,
[18:56]she's like, I was meant to be here because I need to tell everybody all this stuff. Anyway,
[19:00]you should be, it's really good. Absolutely. I will. And if you want me to connect you,
[19:04]I'd be happy to put you guys in touch. Maybe you could do an event together or something really
[19:08]cool. Because yeah, she's a wonderful. She's really great in my, my husband's now actually helping
[19:13]us her documentary because he's a producer. So anyway, he's great. Wonderful. So I noticed in the
[19:19]New York Times review of your book that people are calling attention to your dressing style.
[19:24]How did you feel about that? Did it make, yeah, how did you feel?
[19:28]Yeah, no, I did. It's, it's, it's gratifying. No, I mean, I do make a point of it. And I do make a
[19:34]point of it because I think it's something that, again, a lot of the disabled people have experience
[19:38]with that you really need to think about your appearance because it's so easy to become
[19:44]this credited. If anything is off, you know, there are a lot of people who are, which are users
[19:51]who are also homeless. And so you get a stereotype. And so you get stigma. And it becomes,
[19:58]you know, quite important.
[20:00]to navigate that stigma in different ways.
[20:03]It's that thing of so Rosemary Golan Thompson
[20:05]that disability scholar talks about.
[20:07]There's a lot in her wonderful book called Staring.
[20:09]How we look about how they're being a staring,
[20:13]someone who is socially legitimate to stare at,
[20:16]that person will always be conscious
[20:18]of being the object of other people's stares
[20:20]and will have to negotiate in that in some way.
[20:23]And so for me, thinking about clothes
[20:26]and trying to find clothes that actually fit me,
[20:28]which is not an easy task,
[20:30]became something that I wanted to bring into the book
[20:33]as a way of talking about, you know, looks appearances
[20:36]and all of those negotiations as well.
[20:39]I wonder if in the book stare, they talk about fame
[20:43]because that's another reason why people stare at people.
[20:46]It's, you can look different
[20:47]or you can just be so well-known.
[20:49]I wonder if the effect on the stare is the same
[20:53]sort of for different reasons.
[20:54]Yeah.
[20:55]Yeah, that's an interesting,
[20:56]I mean, I'm not trying to come off with as horrible here,
[21:00]but I have been picked out on the street
[21:03]for having written books,
[21:04]for having appeared on in the media.
[21:07]And so now I never know, you know,
[21:09]it could be that kind of attention.
[21:11]It could be the other kind of attention.
[21:12]I can't be sure.
[21:13]And it's an interesting kind of ambiguity
[21:15]to live with these days for, you know,
[21:17]however long this sort of microcelebrity
[21:20]in our way lasts.
[21:21]Yeah, because I feel like here, you know,
[21:24]people give celebrities a really hard time.
[21:26]Like, oh, yeah, it's hard for you
[21:27]and really sorry, cry me a river, you know,
[21:29]but there is something to not being able to sort of move
[21:33]through the world in a way that,
[21:35]I mean, I don't know, I'm not a celebrity, I have no idea,
[21:37]but anyway, I can imagine, I mean, in my case,
[21:41]it felt like I'm going to get people's attention
[21:44]whatever I do.
[21:45]So it may as well be positive attention, you know?
[21:48]Yeah, I mean, for you, go, you know, milk it.
[21:51]Why not?
[21:52]But it's great, sure.
[21:54]Do you have any advice for aspiring authors?
[21:56]Yeah, I mean, that's a great question, right?
[21:59]I mean, and the answer is always, you know,
[22:02]simple and incredibly difficult.
[22:04]It states to write.
[22:05]I mean, for me, the transformative year
[22:08]was a writing school here in Oslo,
[22:10]where I had to write stuff I would never have written
[22:14]on my own, to just try everything.
[22:16]Different voices, different angles,
[22:19]different genres, different exercises,
[22:22]and then discovering my voice along the way.
[22:24]I've written a lot of academic texts before,
[22:27]but this was something completely different.
[22:28]And I discovered that writing in a different way
[22:32]will also sometimes allow you to write about different topics.
[22:36]I mean, it's really sort of a process of discovering
[22:39]what is within you.
[22:40]Wow, that's great.
[22:41]Well, Yawn, thank you so much.
[22:43]This was so interesting.
[22:44]And again, your book was absolutely beautiful,
[22:47]and I just thank you for spending the time with me today.
[22:50]Thank you so much for having me.
[22:51]Okay, thank you.
[22:52]Okay.
[22:54]Bye-bye.
[22:55]Bye-bye.
[22:56]Thanks for listening to this episode
[22:58]of Moms Don't Have Time to Read Books.
[23:00]Don't forget to follow me on Instagram,
[23:02]at Zibi Owens, and at Moms Don't Have Time to Read Books.
[23:05]Also sign up for my newsletter at Zibi Owens.com
[23:08]and sign up for my virtual book club
[23:09]and meet lots of authors on Zoom every other week.
[23:12]Thanks so much to Steve and Ryan,
[23:13]at Textures Sound for the Sound Editing.
[23:16]And thank you to Morning Moon Productions
[23:17]for providing this fantastic intro and out trim music.