Heather Kamins, author of The Moth Girl, was kind enough allow Jay Vera Summer, managing editor of Chronically Lit, to interview her. Kamins is the recipient of an Artist Fellowship from the Massachusetts Cultural Council, and her short fiction has appeared in Guernica, Luna Station Quarterly, and elsewhere. The Moth Girl is her first novel. She lives in Western Massachusetts with her husband, two cats, and the variety of woodland creatures who stroll through her yard.
The Moth Girl is a young adult novel focused on Anna, a "happily average" high school student who one day faints and later learns that instead of falling to the ground, she floated upward. Thus begins her entrance into a new life with chronic illness. As the synopsis says, "She is diagnosed with lepidopsy, which causes symptoms reminiscent of moths: floating, attraction to light, a craving for sugar, and for an unlucky few, more dangerous physical manifestations. As Anna learns to cope with her illness, she finds herself drifting further and further away from her former life. Her friends don’t seem to understand, running track is out of the question, and the other kids at the support group she attends once a week are a cruel reminder that things will never be the same..."
We hope you enjoy this interview as much as we did!
First, I want to say I enjoyed this book so much. After learning that you developed lupus as a teenager, it felt very meaningful to realize that you wrote The Moth Girl geared toward people who are the age you were when you developed chronic illness. Were you already a fan of YA as well?
HK: Thank you! I would actually say I got more into YA after writing this book. One thing YA is great at is taking on social topics in a meaningful way, and I really appreciate that about it. Generally speaking, I read widely without too much concern for genre or age labels, and I hope this book will resonate with anyone who’s had a similar experience, no matter how old they are now.
As you were preparing to write, did you do anything to help yourself better remember your own teenage years? Read old diaries, reconnect with old friends, ask family members their memories, etc.
HK: I think I did look back over my old journals, though I didn’t keep the most detailed records back then. It was more for the general sense of how I felt during that time. One thing that always helps me get in the right headspace to write is listening to music. I went back and listened to a lot of the same stuff I listened to in high school, which was a great way to recapture the emotions I felt back then.
I'm curious, have many teens (or their parents) reached out to you after reading this book? Since, as you know, chronic illness isn't often well-represented in media, I would imagine this book could be very meaningful to teenage girls with chronic illness in particular.
HK: I have heard from readers, both teens and adults. That’s honestly the most meaningful part of all this for me. It’s easy to get caught up in your own head while you’re writing, and then in all the details of publishing as the book makes its way into the world. Hearing that you’ve made a genuine connection with a real person is truly special — that’s what it’s all about.
I went into The Moth Girl without knowing much about it, and I spent the entire book convinced that lepidopsy was based on POTS, a disorder I've been diagnosed with — since people with POTS are at risk of fainting and often have to sit or lie down, I thought maybe you reversed the situation by making Anna float. I also felt convinced that the desire for sweets was based on fibromyalgia (another disorder I have), since studies have shown people with fibro crave sugar and simple carbs, but their pain can be worsened by eating these foods. When I finished the book and saw it was based on your experiences with lupus, I felt especially wowed! All of these chronic illnesses experiences share many similarities, don't they?
HK: They really do! And lots of us who have one of these conditions have others as well, so it can be hard to tell where one ends and another begins. One of the reasons I went with a made-up illness was so that people with all sorts of conditions could relate to it, so I’m glad to hear that you did!
I adore that you used a fantastical illness. Are there any other imaginary illnesses you came up with before settling on lepidopsy?
HK: It actually took a couple drafts to get to it being a fantastical illness, but once I decided on that, the idea of floating came pretty quickly. For me, it really captured how out of control it can feel to get sick, in every aspect of your life.
You did such a great job of showing how isolating chronic illness can be. Here, the main character lives with her parents, has a group of friends, and is actively making new friends, but you show time and time again that many of the people surrounding her do not understand her. I think the loneliness of this type of situation isn't always evident to people who don't have chronic illness — a person doesn't have to be physically isolated to be emotionally isolated. Was that intentional?
HK: It truly can seem like you’re living in a different reality from the people around you. I remember feeling as a teen like there was a sheet of glass separating me from everyone else: this invisible barrier that I felt even though no one else could see it. It’s not a coincidence that conditions like lupus and some of the others you mentioned are called invisible illnesses, given that many of the symptoms — fatigue, dizziness, brain fog, pain, etc. — aren’t always apparent to others. The people around you who are healthy and don’t have physical limitations might look like you, but they’re having a completely different experience of the world.
I know many people, including many of our readers, find writing about chronic illness experiences cathartic or therapeutic. Do you have any advice for people who are writing for those reasons and want to begin thinking about writing for a wider audience and publishing?
HK: One of the best pieces of advice I have for any writer is to find your community. Writing and publishing can be tough, and having people to commiserate, figure things out, vent, and celebrate with is so important. For chronically ill/disabled writers of YA or any other kidlit, I recommend the Disabled Kidlit Writers group on Facebook, which was started by the wonderful Lillie Lainoff (whose debut novel One for All came out last year, featuring a main character with POTS).
Do you have other writing available online that people can read? Do you think you'll write another book?
HK: You can find links to some of my published short stories on my website. I am working on some other books, so I hope to be able to share those with the world soon. Most of my other writing is geared toward an adult audience (not that that ever stopped me from reading whatever I wanted when I was a teen!). But nearly everything I write has some sort of speculative element to it, so there’s that in common with The Moth Girl.
Are there any pieces of chronic illness writing by other writers you'd like to recommend to our readers? Articles, books, or both?
HK: Having written The Moth Girl partly out of frustration at the lack of realistic illness narratives in the world, I’m excited to see how many own voices novels about chronic illness and disability are coming out these days, especially in YA. On the nonfiction side, Meghan O’Rourke’s The Invisible Kingdom: Reimagining Chronic Illness is excellent. And I love the essay “Six Ways of Looking at Crip Time” by Ellen Samuels, which brought into focus a concept that I felt deeply but didn’t have language for before I read it.
Final spurt of questions: I liked how much you incorporated music into this novel. Is music a big part of your life, and if so, do you feel it helps you cope with chronic illness? What made you decide to use fake band names instead of real ones? Also, I was poking around past interviews you've done and saw you created a playlist for The Moth Girl. Do you mind if I share that with our readers? How did you decide which songs to put on it?
HK: As I mentioned earlier, music is one of the biggest sources of inspiration for me! It also was a major source of comfort when I was first sick as a teen, both in terms of listening to it and by expressing myself creatively through singing. I used fake band names for The Moth Girl as part of my effort to create a world that felt just a few degrees different from our own, and letting people overlay their own specific references and experiences onto it. Also, it’s fun to come up with fake band names! In real life, my playlist drew heavily from the early 1990s alternative music I listened to as a teen, plus a few other songs that fit the vibe for me. My taste in music is just as broad as my taste in books, maybe even more so. And it does still bring me comfort — lying in my hammock, listening to music and watching the clouds, is one of my favorite ways to relax.
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