Interview by Lillie Gardner
Portland-based writer Joshua James Amberson was diagnosed with pseudoxanthoma elasticum (PXE), a genetic condition that can lead to sightlessness, as a child. He writes about living with this uncertainty in his new essay collection, Staring Contest: Essays About Eyes, in addition to a variety of other sight- and sightlessness-related topics, including everything from Bette Davis’s eyes to the history of typewriters.
Throughout the collection, Amberson also weaves in a conversation series with artists and writers who are blind, offering readers a unique communal perspective on the book’s universal topic.
Making connections was a key theme both in my reading of Staring Contest and in my conversation with Amberson, who talked with me about how the collection came into being, the importance of research to the book, and how the thrill of surprise is so important to his writing.
Lillie Gardner: When did you know these essays were going to be a book?
Joshua James Amberson: It was a collection from the start. I had written some pieces of some of these previously—about 8 to 10 years ago a couple of them had their origins. But I thought they were a one-off. In one case I was like, “Oh, okay, I wrote the essay about my eye condition, and I got it out of the way, and it’s done and I’ll never have to revisit that again.” Another was one of the more researched pieces. I did “A Very Brief History of the Typewriter” zine and got into the history around the typewriter beginning as a machine for people who are blind, and so those two were sort of the seeds of it.
About six years ago, a couple writing mentors were like, “This is a book.” A lot of people pushed it toward memoir, and I love memoir but it wasn’t a memoir for me. I didn’t see it as that. I really wanted to be expansive and a little weird and just create a more overwhelming or kind of a sensory overload experience. One, I didn’t think the story was there for a memoir. It was like, well, something more major would have to happen in regards to my health and I don’t want that to happen so I’m not going to push that. And so, even though there’s so much of me in it, I didn’t really want it to be fully about me.
Second, I love the essay form. I read all over the board, but it’s the one genre that I read the most of. I just love the mind at work on the page, and just being surprised by that again and again. And you can’t have those small arc surprises—both surprising yourself and hopefully surprising the reader—in a memoir because you’re so concerned with the larger narrative arc. In making it a book, especially when it got picked up by Perfect Day, the editors there were like, “Let’s cut out as much repetition as possible, let’s really think about the larger narrative arc,” which is something I’d thought of in terms of spacing the PXE-related essays in a way that the arc kept coming back to it. So, I was already hopefully creating some sort of narrative pull to get the reader through, but they really thought deeply about that.
A lot of the present tense in the book came about through their edits, where this sort of ever-evolving “now” of the book was in part their doing. So there were some major revisions, you know, the literary journal version and the book version are very different, and sometimes in a really big way. That was the biggest thing in the editing process, where it was like, “I don’t want this to read as a collection, I want this to read as a book,” or somewhere between a collection and a book with a sustained narrative arc.
“I really wanted to be expansive and a little weird and just create a more overwhelming or kind of a sensory overload experience.” — Joshua James Amberson
LG: That was something I was thinking about as I was reading it. Creative nonfiction tends to feel like, ‘Here’s a story about a thing that happened and here’s how I’m changed from that,’ but as writers we’re constantly processing the world and our experience in the now.
Was it challenging to create an arc that’s not necessarily the ‘here’s the thing I went through and now I’m this way’ story, but is more of a current grappling with something that will continue to be a thing to grapple with? How did you ensure there would still be a thread to bring the reader through?
JJA: That’s something I’ve thought about a lot because this was something that I started calling “done” around the time the pandemic hit. And then everything changes, right? So then, I wasn’t shopping it around, people didn’t have open submission calls, things like that. I and everyone else had other concerns, you know. A lot of things were added and changed in the last couple years, so I won’t say I wrote all of it years ago now, but I decided on a stopping point—like, okay, I don’t write past 2019 or something. So really, where it ends—I go to the PXE conference and I just got diagnosed with Crohn’s—I’m like, “Okay, I’m ending here.” One of my initial goals when I started writing about this was to meet other people with PXE. So it wasn’t the goal of the book project but it was a goal for me, so it feels like a good place to land.
When I was writing the end, I was also finding some balance in Crohn’s and coming out of a year of being really sick. And so I felt like, “Oh, that’s the place we’re going to land,” and then time passed, and the book got picked up probably late 2021, early 2022, and so—it was something that we talked about and Michael Heald, who founded Perfect Day, was like, “Do you want to extend this narrative at all? Do you want to bring it up to date? I don’t think it should be a pandemic book, in that sense, but I imagine some things have changed.” And, you know, some things have changed!
So, even though it’s really short and maybe it won’t land with everybody, the Coda was something we put a lot of time into. We were like, ‘We don’t want it to be long but we want it to sum up the last few years.’ And I’m always interested in just surprising myself, and things going to a place that I don’t expect. But that one just—it landed on my dog. And I wasn’t seeing that coming, that wasn’t something on my checklist of things that I wanted to make sure were in the Coda. And I don’t know if that’s the perfect ending to this, but it’s where I took it after a lot of revisions and distilling.
The Part 2 of the answer would be the conversation series with writers and artists who are blind, which was something I’d been considering for a while as someone writing from a sighted position. I did a lot of research around historical and cultural attitudes toward blindness, and I wasn’t sure how much of that to put in there because it just didn’t always feel like my story, even writing from a research-based perspective.
One thing that’s changed in the last few years is that—though like it says in the Coda, I have had some unexpected vision issues—I haven’t had the dramatic shifts that I’d been planning for, in some ways, in the writing process of this. And so having that at least temporary illusion of stability felt like this really wasn’t my story to tell. And several of the writers and artists who are blind that I’ve been following for years have books coming out now, including M. Leona Godin and Andrew Leland. And Leona’s is really historical and covers a lot of ground. Andrew’s is a more personal journey of knowing he’s going to lose his vision and progressively losing it in his adulthood, so coming from a place of being sighted into a place of blindness. I was seeing these books come out and I was like, “Yeah, my book doesn’t need to do that now, but I want to get some voices that aren’t mine in here.” So, that was something that evolved in the late stages of the book—a kind of polyphonic approach.
So, that’s part of the evolving to just not having a clean narrative line but bringing in other people’s narratives, and to have their stories nested inside, so you can kind of see how different people’s lives work out. I felt like there was a conversation between narratives in there. I don’t know if that comes across, but they felt important to me. And sometimes—like even Leona was like, ‘It’s your book, why do want my words in here?’ essentially. And it was a great question and it made me laugh. We make choices as writers, and sometimes the choice for me is to not have only my own words be a part of the work I’m presenting as mine, and just bringing other people in. I always want to share the spotlight if it ever falls on me, I want other people to come on in, too. It doesn’t feel right standing in that and using it all.
LG: As you mentioned, the pandemic happened and life was changing a lot as you were editing this book. Especially in the essay “Contact,” when you’re writing about eye contact, I was wondering, ‘Oh, is he going to write about Zoom?’ Like, right now, you and I are not making eye contact through Zoom—I’m looking at my computer screen, right?
I started thinking a lot about that after reading that essay, because for a solid two years I was only on a computer screen, and it’s been weird to see people in-person again. You write about glasses being like a mask, and the computer is almost another layer to that. Was that something that had come across your mind as you were working on this during the pandemic?
JJA: Yeah, it feels silly that I didn’t think to bring it into “Contact” because I did think about it. I was teaching over Zoom. I still teach over Zoom. I thought about it and still think about this thing of like, ‘Where exactly am I looking when I look at someone on Zoom?’ and then oftentimes I’m looking at myself, you know, I’m making eye contact with myself. You know, I don’t think I’ve ever seen my face this much! Other people would be like, ‘Oh just turn off ‘you’ on the Zoom and just have it be the other person,’ and I’m like, ‘But what if my face is doing something really weird? I want to be able to check it!’
I teach or coach other writers, often writers who are writing across genres. Some are writing personal nonfiction, and even when you’re not writing personal nonfiction, writing is just a vulnerable thing, and so sometimes it gets vulnerable, right? I’ve done this in the classroom for years without having to know what my face looked like. So it was shocking at the beginning of the pandemic, when I was like, “That’s my face? That’s what my face does?” I didn’t know it because I put on, you know, a mirror face and I was often very serious in the mirror, where it’s like a Calvin Klein ad from the 90s or something. But in real life I smile a lot and my face looks totally different.
So yeah, I didn’t think about bringing this into the essay, maybe because there was already so much. That essay was definitely more in the series that is these different essays with subtitles that run through the book. The ones without subtitles I think of as more the personal narrative or main narrative line, and then the others are operating differently—but this is the catalogue series which is more of a collage style essay. And I think I was so focused on taking things out that I didn’t put very much in.
LG: It seems like you have a pretty good sense of humor about a lot of the research in this book. For example, I had never heard of anti-glasses William Bates, or that quote from him about how putting glasses on a child should make people sick. Was any of that research hard to do, or was it so bonkers that it was just interesting?
JJA: It really depended on the source. Sometimes there was some initial rage and that turned into humor, where it’s like, ‘Oh this is horrible but also absurd.’ And sometimes the best way to point that out is in its absurdity. And in that one—where Bates was this turn-of-the-century ophthalmologist who came up with all these different eye exercises and believed that you could have perfect sight without glasses—the most frustrating part about that one is just finding how many books today are still influenced by his views. Like, the copy editor initially flagged the part at the end of that section where I say that if you Google vision loss, corrective lenses or any books about these things, you’ll mostly find descendants of Bates. She initially flagged it and then fact-checked it and she was like, ‘But it’s… true?’
His idea of just being more in tune with your body and your sight being a part of that, on the surface is a great idea, but—I guess as a person who has a semi-rare genetic condition and an autoimmune disorder, and my partner has conditions, a lot of my friends have autoimmune disorders, and the numbers of these things just keep rising and rising, where more and more people are affected by largely invisible illnesses, of the kind I’m talking about anyway. We know that there’s something completely outside of our control that’s happening and it’s probably a combination of things, there’s probably no one answer, but everyone’s confused by it. And those who are reactionary to it are those who are well, and who are often saying that essentially people are being hypochondriacs. It’s a great idea that our bodies know how to be bodies, but it just keeps proving itself untrue more and more as the years go on, and people get sicker.
That’s the part that’s frustrating to me, that those ideas continue both in these ostensibly holistic books about eye health and also just more broadly in terms of people being reactionary to other people being truly sick or unexplainably sick, which is the case for a lot of people who don’t actually have diagnoses or have diagnoses that don’t fully explain what they’re going through. That’s why I really wanted Bates in there. He’s like a poster boy for all of that. And because he’s historical, it’s easier for me to laugh about it. But then, you know, his descendants, people with that attitude today, are really frustrating and angering to me. So I wanted him in there for some comic relief and to make some of those connections too.
LG: What do you hope that readers will take away from this book?
JJA: That’s something I’ve really only started thinking about as it’s started existing in a book shape rather than a manuscript shape. Seeing it as a book means that people come to it with all sorts of different assumptions of what a book is and how a book operates and how an essay collection operates and how personal nonfiction operates. Suddenly my brain flooded with all of that knowledge. Like, ‘Oh yeah, people come to the page with assumptions and maybe this book doesn’t meet those assumptions in any number of ways.’ I was really conscious of that in the writing process but it’s a lot different when it’s presented in this final form.
I let myself as a writer go to some places in some of these essays that I’m a little uncomfortable going to in life, just having moments I wanted to have, to represent the fact that especially at the beginning of getting eye injections and having health issues, I had some tantrums, you know, that I reacted in a ‘woe is me’ sort of way. And that’s not where I’m at right now, at all. For me that’s not my personal storyline. My journey through PXE and Crohn’s is the narrative line holding it together and making it a book, but in some ways that’s the least interesting part of the story for me.
So, I really hope that the takeaway isn’t, ‘Oh, you have a hard go of it,’ or, ‘You’ve been dealt a bad hand,’ or something like that, because in so many ways I haven’t. And I just don’t want that to just be what people take out of it. But yeah: something about illness, invisible illness, disability. As long as they’re not applying those things directly to me the writer, I want people to think about those things.
How I speak is really associative, when one thing connects to another. As I write in the book, I was a really shy kid and I didn’t talk at all, but a lot of my family were big talkers and I was raised in part by my grandparents, and I’m like my grandpa now. He just talks and it’s just like one thing leads into another leads into another and he doesn’t know where it began and I’m like, ‘Oh I didn’t know that would ever happen to me.’ So, I’m trying to be really aware that I go really far from the original question or topic or idea that I came into an essay with. So, there’s something—and I haven’t really placed what language to apply to it—but there’s something about noticing and seeing connections in the world that I think is maybe the biggest takeaway for me. This is a reminder for myself too, like even if I do it on the page it doesn’t mean I’m doing it in everyday life, just being really aware of what’s around us and the connections between each other and nature and how intricately everything is in the world.
To me that’s what causes people to be associative talkers or thinkers is like, well, you know if you get deep into it then everything’s connected. If you start looking for connections, they’re there. And that was my intention in thinking really broadly about all the ways that humans—and this book doesn’t cover all of them obviously—but all the ways that humans use or relate to their eyes. Early on I was like, ‘Oh, crying! Our eyes cry!’ That was a revelation to me because I was so focused on the idea that sighted eyes only do one thing. I like how one idea can be a jumping off point for all of these different ways of approaching and considering the world.
Joshua James Amberson is the author of the young adult novel How to Forget Almost Everything (Korza Books), a series of chapbooks with Two Plum Press, and the long-running Basic Paper Airplane zine series. He lives in Portland, Oregon, where he runs the Antiquated Future online variety store and record label.