Author Heather Kamins believes “it’s important for people to tell their own stories in their own words.” With her debut young adult novel, “The Moth Girl,” 15-year-old Anna, whose life changes drastically when she is diagnosed with the fictional chronic illness known as lepidopsy. Kamins, who was diagnosed with lupus at 14, drew on her experience to inform this richly drawn metaphor featuring rare, mysterious symptoms (inspired by the behavior of moths) that leave both Anna and the reader in the dark. Anna is faced with adapting to her new reality and how she sees herself within it.
The book debuted March 8 from G.P. Putnam’s Sons Books for Young Readers and joins a slow-growing but important list of YA and middle grade stories that center on teenagers with chronic illness and diseases (like, “Full Disclosure” by Camryn Garrett and Karol Ruth Silverstein’s “Cursed”). Kamins, who received a 2016 Artist Fellowship for fiction from the Massachusetts Cultural Council, chats from her home in Western Mass., about how we tell stories, why she writes for teens, and why the decision to include an unreal illness was important to her
Q. “The Moth Girl” is set in the early ‘90s, which means the character didn’t have access to information as easily as we might today. Why did you choose that world?
A. The book is inspired by my own experience of developing lupus in 1990, so I wrote what I knew. Getting sick can feel very isolating, and that was even truer before we had the Internet and social media as a way to connect with others.
Q. Your own experience adds depth and authenticity to the book. I was curious, though — you were 14 [when you were diagnosed], but your character is a little bit older. Why did you choose to age her up to 15?
A. There were a lot of revisions on the book and the timeline contracted a lot. When I condensed it to a single school year, I decided that 15 was the right age for this story. It’s an age when teens are no longer freshmen, so everything about high school isn’t new, but they’re not necessarily looking towards college and their futures yet, either. It’s more about trying to figure out their identity and how they fit into high school right now.
Q. Anna’s illness, lepidopsy, is fictional. How did you come up with it? And why not use a real illness that people are more familiar with?
A. I chose to use a fictional, fantastical illness to capture how disorienting it can be to go from completely healthy and active one moment to suddenly having this illness that upends your life and changes what you’re able to do. I think magical elements can be a good way to access emotional truths in fiction, and floating seemed like a good metaphor for this situation.
The treatments, lab tests, and assistive devices all developed from there, growing out of the question of how a floating disease would be managed. That world-building was one of the most interesting parts of writing the book for me.
Another reason I wanted to use a fictional illness was to circumvent some of the preconceived notions that people bring to the table about what an illness narrative looks like. I liked the idea of defamiliarizing the illness so readers could learn about it alongside the character and be just as confused as Anna is about what’s going on and what might happen to her.
Q. You have said you wanted to write this because you didn’t see stories like yours when you needed them. Do you feel like that’s changing and there are more books available now? And, why now?
A. When I was 14, YA wasn’t really even a category, [but] the existence and expansion of YA means that a lot more books are coming out for this age group and telling many more stories. For a lot of people who are chronically ill or disabled, the Internet is such a great place to find a community and information. It’s a place to learn about ableism, advocacy, and shared experiences. It’s a place to be in conversation with one another, and maybe that’s been part of why more people are speaking up with their own stories.
Of course, for books to get out into the world, publishers also have to be willing to take on these stories. That’s starting to happen, but there’s room to do much more. My book is a story about diagnosis and learning to live with an illness, but we need all kinds of stories about chronically ill and disabled characters where we see them at other points in their lives doing other things, from falling in love to having adventures.
Q. Is there anything else you would want readers to know about you or “The Moth Girl”?
A. It’s important for people to tell their own stories in their own words. There are so many negative tropes about illness, and what they usually come down to is sick people being objectified to further other characters’ development. And that can spill over into the real world and impact the way chronically ill people are treated. For example, when I was younger, people would say things like “you’re so brave” — but they didn’t show any real curiosity about what I was going through or how I felt about it. We need stories about illness that center the characters who are actually experiencing it, written by people who understand it firsthand.
This interview has been edited and condensed for clarity.
Adria Karlsson is an author and writer based in Cambridge. Follow them on Twitter @adriakarlsson.