By Laia Feliu

Today we’re pleased to welcome Heather Kamins to the WNDB blog to discuss YA novel The Moth Girl, out since March 8, 2022!

Flying doesn’t always mean freedom.

Anna is a regular teenaged girl. She runs track with her best friend, gets good grades, and sometimes drinks beer at parties.

But one day at track practice, Anna falls unconscious . . . but instead of falling down, she falls up, defying gravity in the disturbing first symptom of a mysterious disease.

This begins a series of trips to the hospital that soon become Anna’s norm. She’s diagnosed with lepidopsy: a rare illness that causes symptoms reminiscent of moths: floating, attraction to light, a craving for sugar, and for an unlucky few, more dangerous physical manifestations.

Anna’s world is turned upside down, and as she 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 disease clinic she attends once a week are a cruel reminder that things will never be the same.

Hi Heather! Firstly, thank you so much for your time. I loved The Moth Girl and I cannot wait for everyone to get their hands on it.

Before diving into the interview, I would like to give you the space to introduce yourself to our readers.

Thanks for having me! I live in Western Massachusetts with my husband and two cats. In addition to reading and writing, I love gardening, music, nature, and being weird with my friends.

Anna is a young woman who is trying to figure out who she is when she is diagnosed with lepidopsy. What inspired you to create this story around a chronic disease?

I was diagnosed with lupus when I was 14, and I didn’t see good representation of chronic illnesses in books, movies, or TV—and definitely not stories about teens. This was back in the early ’90s, so YA as a category didn’t exist like it does today. It was also pre-social media and pretty much pre-internet at all, so that wasn’t an option for connecting or sharing stories, either. As a result, dealing with my illness often felt very lonely. I wanted to capture some of what I felt back then, as well as to provide a story that chronically ill teens today could see themselves in and feel less alone.

What motivated you to invent this curious disease instead of writing about an existing one? 

I really like playing with magical or fantastical elements in otherwise realistic settings, as I think those elements can be an effective way to access deep emotional truths. Getting seriously ill can feel so surreal and disorienting, so an imagined disease with fantastical properties felt like a good way to capture that feeling—Anna literally feels like she can’t find her footing and is not on solid ground.

In addition, I felt that a made-up disease would make the course of the illness less predictable for readers. There are so many tired tropes about illness in popular culture, as well as lots of preconceived notions about specific illnesses. I wanted readers to be just as uncertain as Anna about what would happen to her as a way of bringing them closer to her emotional experience.

Anna goes through many difficult situations with her friends and her family because of her diagnosis. Are there any topics or scenes that were hard for you to write about?

This story is very much fiction, but I did draw upon some of the real emotions I experienced when I was a teenager: sadness, anger, confusion, resentment. That feeling of being left out and left behind is so painful.

One of the hardest things for me to deal with as a teen was other people twisting my story into something that was unrecognizable to me. Sometimes that meant them putting me on a pedestal by saying how brave or strong I was when that was the last thing I felt like. Sometimes it meant them looking at me or talking about me with pity or disgust. In a sense, the whole book is a response to those misinterpretations—a way to reclaim my own story. So the moments when people twisted Anna’s experience for their own ends or because of their lack of understanding, those were very emotional to write about.

Some of the children that Anna meets on her weekly check-ups have other diseases with curious symptoms, have you thought about writing about some of these other illnesses?

I haven’t, but never say never! I’m not someone who figures out every detail of a story and its world before I start writing—I just dive in and see what I discover along the way. So there are things that are hinted at that aren’t necessarily fully spelled out, which makes the world feel more realistic and textured to me. 

Part of the worldbuilding with this book involved figuring out the branch of medicine Anna’s illness falls into and what other kinds of illnesses might also fit there. That’s explored through the people Anna encounters at the doctor’s office. Initially, there were more people with lepidopsy, but in revisions I had to figure out exactly how rare it was and how much information Anna would likely have about it before being diagnosed.

Out of all animals and creatures out there, why did you decide to base Anna and Pam’s disease on moths and butterflies?

I started with the idea of floating, and then thought about creatures that flew or floated. To me, moths seemed to be frequently overlooked compared to butterflies or birds, yet are just as interesting and complex. Once I settled upon moths as the organizing theme, I incorporated some other moth characteristics into the illness, such as fluttering, being drawn to light, and drinking sweet nectar or sap (or in Anna’s case, craving candy and soda).

After the amazing ending I found myself wondering what Anna would do with her life and what would happen to her passion for cross-country. Have you thought about what Anna’s future dealing with Lepidopsy might look like?

Having now had lupus for over 30 years, I can say from experience that dealing with a chronic illness can happen in many different stages over time. There’s the initial adjustment, and there are more adjustments and deeper understandings that occur as you go through different stages of your life. But finding people who understand and support you is always important, as is finding interests that bring you joy. So I hope Anna will continue to do both of those things. Since she loves art and clothes, maybe she’ll do something with fashion design or go into some other creative field. And I like to believe she will find ways to be physically active that are safe and comfortable for her—ways to feel good in her own body.

As a person with a chronic disease, I am extremely grateful for books like yours, which show children suffering with illnesses that they are not alone. Is there anything you would want your young readers to learn about from Anna’s life?

Some of the things that really helped me when I was a teen, which I hope come through in the book, were finding ways to express myself creatively and stand up for myself. It’s also really important when you’re dealing with so much heavy stuff to be able to have fun and just be a kid sometimes! I hope readers will feel inspired to do all of those things in their own ways.

What topics that you’ve covered in the book do you hope we’ll be reading more about in the future?

Chronic illness has been part of my life for such a long time and has shaped so much of how I experience the world, so I imagine that will come up again. More than any particular topic, the use of fantastical elements to explore big emotions is something you’ll definitely see more of.

Are there any books within the YA genre or with similar messages to The Moth Girl you could recommend?

I’m really happy to see more authentic chronic illness and disability representation coming out in YA! Cursed by Karol Ruth Silverstein features a snarky 14-year-old with arthritis. One for All by Lillie Lainoff is a gender-bent retelling of The Three Musketeers with a main character who has Postural Orthostatic Tachycardia Syndrome (POTS). I’m also looking forward to reading Breathe and Count Back from Ten by Natalia Sylvester when it comes out later this spring, about a girl with hip dysplasia who wants to audition to be a professional mermaid at a local tourist destination. It’s wonderful to see not only a greater number of books about disabled teens but a greater variety of story types and genres, too.

And last but not least, where can everyone get their hands on this amazing and heart-warming story?

If you’re interested in a signed and/or personalized copy, you can order one through Odyssey Bookshop. Otherwise, it’s available in hardcover, ebook, and audiobook formats from your favorite bookseller.

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Heather Kamins is the recipient of an Artist Fellowship from the Massachusetts Cultural Council, and her short fiction has appeared in Guernica 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.

 

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Laia is an English Literature and Creative Writing student based in Guildford, a beautiful town west from London. She spends her free time immersed in fantasy books or going on walks with her boyfriend and their dog. Her favourite book is It Ends With Us by Colleen Hoover and she recommends it to every new person she meets.