Anne Ursu’s new middle-grade novel tackles chronic fatigue and COVID

CATHY WURZER: Today is the fourth anniversary of the World Health Organization declaring COVID-19 a worldwide pandemic. In those four years, nearly 1.2 million people have died from COVID in the US. Years later, we are still processing what those early pandemic days meant to us.

Award-winning Minneapolis writer Anne Ursu put out a new book this year that processes the grief and sickness so many of us faced. The book is called Not Quite A Ghost." And it's written for middle grade readers, kids aged 8 to 12. MPR's Emily BRIGHT recently sat down with Anne to talk about her novel.

EMILY BRIGHT: I have to put on my geeky English major hat for a moment because this is your middle grade take on The Yellow Wallpaper. And could you just remind people of the premise that story, and why you wanted to make it your own?

ANNE URSU: It is Charlotte Perkins Gilman's novella about a woman who-- she has what really is a postpartum psychosis. And her husband just prescribes a rest cure for her, which means she basically has to sit in the attic bedroom all by herself, and she can't do anything. Meanwhile, there's this very creepy yellow wallpaper in the bedroom. And since all she can do is spend her time looking at it, she starts to see a figure moving around in the wallpaper, and she slowly goes mad.

So I went into this book wanting to write about chronic illness. I was diagnosed with the disease known as chronic fatigue syndrome, but I had started reading more middle grade horror. And then I realized, oh, chronic illness is horror. It just comes at you right out of the blue, you can't do anything about it, and you're completely trapped by it.

That got me to researching monsters and monsters in history. And when I read, I think it was an MPR article, about the history of horror, and the second book they listed was Yellow Wallpaper, I was like, oh, yeah. That idea was there the whole time. I just couldn't-- it took me a while to get to it. So it was the perfect story.

EMILY BRIGHT: That was one of the questions that I wanted to ask you was, I mean, you've set yourself up for quite the writerly challenge because the whole thing about being sick and being fatigued beyond all reason in a way that other people can't understand. So you can't do much, and yet characters have to do things to drive the plot. So you must have been wringing your hands writing this.

[LAUGHING]

ANNE URSU: Oh, it's so hard. I mean, one of the problems you come up with in chronic fatigue syndrome is-- first of all, the name doesn't mean anything. Neither chronic, nor fatigue, nor syndrome. Like, what is fatigue?

So you go to the doctor, and you tell him, I have fatigue. And then, like, oh, everybody does. There's no way to really describe the depths of these symptoms or the Laura Hillenbrand, who has CFS, described-- she said this illness is to fatigue, what a nuclear bomb is to a match.

EMILY BRIGHT: Wow.

ANNE URSU: But that's hard for, say, an 11-year-old to describe, and it's hard for me to even describe that feeling for myself, let alone give her words for it.

I did have to have her discover a cat because, I mean, first of all, there should be a cat in every book, but also, she needed something to interact with. She's up in her room, and she's completely isolated. I have to remove electronics from her. And so she needed a thing to talk to.

EMILY BRIGHT: I mean, this is a book that you just want to keep reading so you've clearly, surmounted those challenges. But I noted at one point that Violet gets accused of hysteria, which is straight from The Yellow Wallpaper.

ANNE URSU: Yes.

EMILY BRIGHT: I caught you. I mean, I was like, yes. Yes, I got that word in there.

ANNE URSU: Got to have some fun.

EMILY BRIGHT: But I mean, the medical-- her friends and the doctors that she sees kind of don't know what to make of this.

ANNE URSU: Illnesses are supposed to follow certain patterns, right? You get sick, you have symptoms you can describe, you go to the doctor, they run some tests, they tell you what it is, and give you a treatment for them-- for it. And our, not just the medical community, but the society doesn't really have framework for illnesses that don't work like that.

And so for the sixth graders around her, it doesn't make any sense. But Violet and her mom go into doctors thinking, they're going to be able to help me. And what they're wholly unprepared for is the fact that she's just basically gets turned away. She's told she's either had anxiety or is doing this for attention. And for some reason, illnesses like CFS are ones that the medical community just, they can't deal with it, and so they want to hand it doesn't exist.

And this was certainly a problem when I was diagnosed when I was younger, and it's happening in the exact same way now. Like, patients come in to the doctor's office, and they expect to get help, and what they get instead is told that there's-- that it's all in their head.

EMILY BRIGHT: You should get better sleep.

ANNE URSU: Right.

EMILY BRIGHT: Better sleep habits. You should eat a healthy diet and you know. Good advice.

ANNE URSU: Yeah, have you tried yoga? Right.

And in the case of CFS, one of the things that often happens is, oh, you're probably deconditioned. You should exercise more, which is, in fact, the worst thing you can possibly do because there's a thing called post-exertional malaise, which means after you exert yourself, you will crash the next day. And that is unique to CFS and long COVID.

EMILY BRIGHT: COVID is in this story. It was a part of their lives, and the kids, their timelines. It affects how Violet feels about germs. Did you want to write about COVID, or is it more that you felt you couldn't leave it out?

ANNE URSU: I don't know that anyone wants to write about COVID. And in fact, as I was writing this-- which I think was 2021 and 2022-- we're still deep in it. My kid is still home from school. And when you're writing a story, you, yourself, kind of want to escape so I just wrote this, and in this book, it didn't exist.

And my editor read it and was like, Anne-- I mean, it wouldn't make sense if long COVID wasn't at least mentioned in this book. But also, it's a book deeply concerned with illness, and the fear of illness, and how illness is interpreted by society.

And so Violet was in second grade when lockdown started, and it's an age ago for a kid. And so you start to think, well, how is this going to affect who she is now, and who her friends are now, and this whole class of kids suddenly going into middle school, who really didn't get to experience a normal elementary school?

And so for Violet, I had her be really germ wary because this was this enormous thing that happened. And sometimes, I think, as adults, we want to pretend things didn't happen for our own sakes, but also, like, oh, we don't want to make our kids sad. But you think about what the effect is on kids when everyone around them is pretending this didn't really matter. And so the lesson you take from this is, oh, it didn't matter, and whatever my feelings about it are wrong.

EMILY BRIGHT: Well, one of the things that I really appreciated is that-- speaking of the adults-- they're really kind and capable. And so many parents in books for kids aren't. There's this tendency to just make them cruel or kill them off so that you can put the kid right front and center making the decisions. But was that important to you, to have great parents, frankly?

ANNE URSU: I wanted to put Violet in a situation where she had a lot of family support, but also, you can have all the support in the world, and it's not necessarily going to help the illness, and you're still going to feel really alone. And also, as a mother, I can say, you can be as supportive as you want and still make mistakes.

I like to write parents who are doing the absolute best they can, but things go wrong all the time. And that's part of being a kid is reacting to what your parents do with the best of intentions, but it's all wrong.

EMILY BRIGHT: Well, one of the things that goes wrong is this Not Quite A Ghost. Something is haunting this house. What do you want-- what do you want to say about that and about writing horror, in general?

ANNE URSU: As Violet spends more and more time in her room, she starts to notice, there's something moving in her wallpaper. And unlike the protagonist of The Yellow Wallpaper, this is what Violet perceives as actually real. The problem is, she can't tell anyone about it.

Her mom, her family, she feels like they're the only ones who believe her, that she's ill, and if she starts talking about a ghost, she's desperately afraid they won't leave her anymore. So she feels like she has to manage this on her own. She can't tell anyone, and she's completely alone with it.

So the ghost grows more and more menacing, and sort of finds a way to make sure Violet has to stay in her room. She can't move to any other room in the house. And that was fun to write and also, hard.

I sat with-- first of all, I sat with The Yellow Wallpaper, and I looked at the progression of the wallpaper, and I really studied it and tried to sort of mimic that in terms of how the wallpaper would slowly reveal itself and become more and more creepy. It was scary, but it was, also-- it was really fun to write. It was a whole new challenge. And now, kind of, all I want to do is write about ghosts.

EMILY BRIGHT: What do you hope that readers take away from this, besides not being able to put it down and wanting to tell all their friends about it?

ANNE URSU: I think this book also talks, on some levels, about listening to people, about empathy. Sometimes the best thing you can do for someone is to believe in their ghosts.

EMILY BRIGHT: Anne, this book is fantastic. Thank you for talking with me today.

ANNE URSU: Oh, thank you so much, Emily, for doing this. I really appreciate it.

CATHY WURZER: Anne Ursu is the author of several acclaimed books for middle grade readers. Most recently, the title Not Quite A Ghost.