Hayao Miyazaki’s Characters Help Me Grieve My Chronic Illness

Is any art form tied to childhood more tightly than cartoons? Even in my family, where TV was strictly limited and my parents eschewed cable until I was in high school, I managed to absorb the zaniness of the Animaniacs and memorize most of the songs in Aladdin and The Lion King. On certain special days in elementary school, teachers would wheel in a boxy TV and play episodes of Schoolhouse Rock in lieu of a lesson. Elsewhere, commercials featured cereal-box mascots with their own jingles. Comic-strip characters like Snoopy leaped from newspaper to screen. Even my ultra-religious aunt, when we visited her house, resorted to saccharine animated stories of the saints to keep us occupied.

But around sixth grade, the year I got braces and became editor of my Catholic school newspaper, it became evident that cartoons—especially hand-drawn animation—were only for kids. It was still socially acceptable to like newer CGI stuff, like Shrek, with its pop-music soundtrack and famous cast. But the popular students now watched live-action shows like Lizzie McGuire and The Real World. At home, the situation was similarly dire. Even though I had a younger brother, our boxes of VHS animated movies gradually disappeared, donated to our toddler cousins. If my parents happened to catch my brother and I watching Pokémon or Yu-Gi-Oh, there often came the reprimand: “You’re too old for this.”

It was easier to give up on TV altogether than fight for after-school anime privileges, or seek out bootlegged copies of Atlantis. I decided teenagerhood was an opportunity to prioritize my love of reading. If animation really was juvenile, I’d happily dive into literature to prove my maturity.

A few years later, I was studying abroad in France as a sixteen-year-old who only spoke basic French. Among the earliest cultural surprises was the fact that most students still read comics—les bandes dessinnées, or BDs—without any sense of embarrassment. In a country obsessed with highbrow culture and intellectualism, comics had earned a place of prestige. It had been years since I’d read them, but now I saw them everywhere. Exploring the form made animated film seem like it could be prestigious, too. When a friend from the lycée, eager to help me expand my vocabulary, offered me her copy of the movie Spirited Away (Le Voyage de Chihiro in French), I accepted.

Even without fully understanding the dialogue, I fell into the story of a girl transported to a bizarre spirit world, where she’s set impossible tasks without entirely comprehending them. So much of my time in France had felt similar; even when I became more fluent in the language, the subtleties of cultural norms were still a challenge to parse.

Seeing my friends read the BDs, engage in discussions of Hayao Miyazaki, and visit Parc Astérix—a theme park based on the comic-book characters Astérix and Obélix—upended my perception of animation. Over the next few years, I returned to cartoons and realized that the genre had expanded in the interim to include more adult offerings, like Futurama and Archer. As I moved deeper into adulthood, accumulating chronic illnesses throughout my twenties and early thirties, I realized something else: these animated stories were one of the few places where I saw some of my darkest moments reflected back at me.

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In the fall of 2019, I underwent surgery for torn cartilage in my right wrist. This wasn’t my first procedure for joint pain—I’d had a similar operation on my knee several years earlier, and done months of physical therapy for an injury in my shoulder joint years before that—but the pattern between treatments still hadn’t emerged. Expecting the recovery period to be a few months, I told myself this would be no more than a pause on my normal life.

But in the aftermath of the surgery, more and more problems emerged. I began having joint pain in my toes and hips and fingers and spine. I developed a persistent low fever. My left eye turned an angry red, a non-bacterial inflammation called uveitis. Some days, my elbows hurt so much it was hard to lift a glass of water.

When I came to Miyazaki’s Howl’s Moving Castle and The Legend of Korra, the stories held a newly charged resonance.

For months, I cycled through a revolving door of specialists who ran countless tests and struggled to find an explanation. On good days, I could walk for a mile or more. On bad ones, it was hard to make it around the block. I took high-dose pain relievers, which helped with some of the joint pain and stiffness, until I developed a stomach ulcer. Finally came the diagnosis of psoriatic spondylitis, a form of autoimmune arthritis. I already had two other autoimmune diseases, so I was familiar with the prognosis: Incurable, lifelong, potentially debilitating.

When I’d been diagnosed with Hashimoto’s thyroiditis and celiac disease seven years earlier, some major aspects of my life had changed, but I could still pursue most of my normal activities. Arthritis, however, sapped my energy and left me in constant pain. Desperate for a distraction, I began to rewatch some of my favorite TV shows and movies. When I came to Miyazaki’s film Howl’s Moving Castle and the animated series The Legend of Korra, both of which I’d seen plenty of times, the two stories held a newly charged resonance. The shock of recognition I felt watching them was almost as jarring as a physical revelation. Sophie and Korra, the respective main characters, had experiences that fundamentally mirrored my own. Stories I’d understood to be about protagonists living alongside magic and fighting for the fate of the world could equally be read as analogies for the personal struggles of chronic illness.

Early in Howl’s Moving Castle, Sophie is cursed by an evil witch to take on the physical appearance of an elderly, rheumatic woman. Her back is hunched, her body aches, she’s cold and tired and scared. Throughout the film, Sophie has periods where her youthful health returns, but then she reverts to being old and infirm. When she confronts the witch who cursed her, the witch can’t lift the spell. Even when Sophie manages to cure herself, her once-brown hair remains silver. This visual change is especially significant for animation, where characters retain largely the same appearance no matter what happens to them.

In the fourth season of The Legend of Korra, the titular protagonist is also recovering from a traumatic event: an attack that nearly kills her. Initially in a wheelchair, Korra leaves her friends to focus on her recovery, which she expects will take a few months. Instead, she spends three years building up her strength to confront a new aggressor, while still suffering from PTSD and physical weakness. Like Sophie, Korra’s haircut changes, becoming a mark of what she’s undergone. Even though Korra has regained most of her former abilities by the end of the season, and Sophie is no longer an old woman when the film concludes, it’s clear that neither woman has total control over her body. As with my own situation, there was no clear answer to the question, will this happen again? All three of us, in our different universes, were learning to cope with dynamic disability.

I first discovered that term, coined by activist Brianne Benness, when I was trying to put a name to the exasperating fluctuation of my symptoms. I was hesitant to call myself disabled, especially on days when I could still do most of my usual activities. My uncertainty came not only from a sense of imposter syndrome, but also from the many years of ableism I’d internalized. Had my circumstances been different, I might have embraced the disability label sooner. But because I work as a freelancer out of a home office, I never had to request accommodations from an employer. Living with my partner meant I didn’t need to apply for disability benefits when my illness kept me from working for several months.

While I’ve learned more about the disability-chronic illness overlap and am now comfortable placing myself in that first group, dynamic disability still feels like a more accurate description for me. The term conveys the maddeningly erratic behavior of chronic illnesses like mine. Our dietary restrictions may change from one month to another; activities that our bodies tolerate one day could be impossible the next. In my experience, the term dynamic disability reflects the impossibility of predicting how I will feel at any time beyond the present and very near future.

Watching Sophie’s and Korra’s stories provided emotional catharsis as I worked on navigating my new physical limitations. Living with chronic illness is a process of learning to live with grief. I grieve the body I had before I fell ill. I grieve the future I used to envision when I took my health for granted. I’m angry at all that’s been taken from me, and angrier still at the myriad ways in which the world treats people with illnesses and disability as if they are disposable. Sophie and Korra express similar frustrations. Sophie rages against the lesser griefs of the people around her (like Howl, when he becomes distraught over his hair dye not working); Korra is mired in self-doubt when she’s unable to bring down her opponents through the physical strength she’s always relied on in the past. Both of them have to relearn their relationships with their bodies—how to trust those bodies, even when they may not be dependable.

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Sometimes I imagine how it would feel if being cured were a more magical process: removing the poison from my body by bending the elements (like Korra) or breaking a curse that a witch set on me (like Sophie). My reality is both more mundane and more miraculous: A clinic I visit every forty-two days where a nurse inserts a hollow needle into the radial vein near my elbow and initiates the flow of a liquid made from the cloned white blood cells of mice and humans. This fluid diminishes my body’s immune response, thus preventing attacks on my sinew and bone. But it’s not a cure. It’s a stopgap that comes with its own repercussions: a higher risk of illness, infection, and certain types of cancer.

Living with chronic illness is a process of learning to live with grief.

Unlike Korra and Sophie, I can’t signal the profound transformation of my body with a new haircut or wardrobe. Sometimes there are compression gloves and sleeves I wear on high-pain days, or a knee brace that makes it easier to walk, or a face mask I plan on wearing in crowds even after the pandemic is declared “over.” But because we living humans are always changing outfits, changing styles, changing appearances, I can’t count on the way I look to convey any particular message.

Instead, it’s my voice that I’ve come to depend on. To insist on accommodations when I need them. To push back against those who think I’m exaggerating. To explain why dynamic disability does not make me lesser. Watching beloved animated characters go through similar challenges is a validation—and a reminder that my experience is far from unique. More than 50 percent of American adults suffer from a chronic illness; about 27 percent have multiple illnesses to manage, like me.

Early in Korra’s recovery, when she’s still struggling to walk, she explodes at her healer, an old woman named Katara. “I am trying to understand why this happened to me,” Korra concludes. “But nothing makes any sense. I’m tired, Katara. I’m so tired.”

Watching that scene after two years of living with arthritis, I couldn’t stop myself from crying. The episodic nature of animation and the characters’ ability to demonstrate a range of extreme emotions both make the form well-suited to representing dynamic disability. Nothing about my recovery has been linear. The interplay of my various illnesses means that even when one disease is less symptomatic, another might be flaring. I want so badly to find an answer to that question—why did this happen to me? But as Katara reminds Korra, there are no easy answers.

Korra’s predecessor also suffered enormously in his lifetime and chose to find meaning in the suffering. But Korra isn’t the same person as he is. She’s brash and fierce and proud of being the avatar, and to lose her abilities is almost like losing her sense of self. Still, hearing how her progenitor survived gives her the courage to believe she’ll survive, too.

“What am I going to find if I get through this?” Korra finally asks.

“I don’t know,” Katara says with a slightly sad smile. “But won’t it be interesting to find out?”

On my very worst days, these are the lines I return to. I still feel plenty of anger and grief and, sometimes, despair. But dynamic disability has taught me more about myself, my resiliency, and my relationships than anything else in my life. I have more patience for myself and my needs, a greater appreciation for small victories, and, yes—a deeper love and respect for animation.

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