The zine-rich, Instagram-famous rapper-cum-comics-artist Grant Gronewold sits in a dark corner of his chaotic bedroom studio in a house he shares with a botanist, a social worker, an artist, two illustrators, a ceramicist, a carpenter, a farmhand, a dog, a cat, and Side Salad – the last survivor of a coop full of chickens – in the Brunswick neighborhood of Melbourne, Australia. He’s small, bespectacled, mustachioed, wearing a Bart Simpson vest that exposes numerous sketchily inked tattoos across his hands, arms, and neck.

He speaks with a strong Chicago accent that occasionally gives way to an antipodean drawl, peppered with Australian turns of phrase (daggy, rock up, tall poppies). He slurps from an oversize Pikachu mug full of coffee – his third of the day at 11 p.m., part of his strict daily routine – and takes a breath before launching into a fast-paced, loquacious rant that draws parallels between science fiction and the reality of living with a disability.

“Sci-fi films feel like being sick; you’re isolated and there’s some kind of weird fear that’s creeping in. You don’t know what it is, but you’re paranoid, and there’s no one else with you in the fight – it’s just you, alone. You have to navigate this insurmountable fear that no one else deals with, which is space. But for me, it’s death.

“The only gift most of us get is that we die before we touch nothingness. But to be lost in space, to be lost in nothingness – to still be alive but decaying while that happens – is one of the biggest human fears. And that’s why we hate sick people. Nobody likes me because I remind them of death.”

Gronewold was born in 1987 in Carbondale, outside Lincoln, Illinois, and for the first six months of his life he was horribly, critically ill. Coughing, sweating, projectile vomiting, trapped in wakeful fits, he was diagnosed with cystic fibrosis, a genetic condition that weakens the lungs, primarily, but also the kidneys, liver, pancreas, and intestines. When his parents were told about his condition, his father walked out on the family for good.

After those first six months in hospital, the infant Gronewold had already racked up almost half a million dollars in medical bills. His mother declared bankruptcy and sold everything she owned, sleeping on friends’ couches or in the back of her car with her newborn son, traveling around the Midwest to find hospitals that would treat him. She lived this way for a long time. Sometimes she’d get lucky; a friendly nurse would admit her baby to the hospital bed of a patient who hadn’t yet been formally checked out, and they’d run Gronewold’s meds through the still-open insurance plan. Other times he’d simply be given treatments or pills for free. Without that, Gronewold’s illness would have killed him.

“We just had a crappy life,” says Gronewold, who began living with his grandma. Then, when Gronewold’s grandma died, his mother decided it was time to leave the U.S. The idea had been percolating for a while, and she’d put some money aside for the move. She’d visit the local library to research foreign health care systems and how to move overseas, and then, by chance, met an Australian man on a Hunter S. Thompson appreciation forum online. They hit it off – “There was a genuine spark,” says Gronewold – and with the last of her mother’s life insurance money, she bought passports and plane tickets to Australia. Gronewold was 11. The guy ended up being an alcoholic, but in Australia, the state would provide the health care Gronewold needed and afford his family a better life.

The trauma Gronewold experienced before Australia still unsettles him. “As a kid, I remember knowing that my life was really different,” he says. “My family was really poor in that town, and I understood that we were a lot worse off because of that poorness. In our town, there were working-class people who were just getting by, and we were a rung below that. There’s a saying where I’m from that you’re either doing time in the bottle factory or you’re just doing time; those are the two options. But we were there because of my illness.” 

Illness is the subject that underpins all of Gronewold’s visual and musical work. From his first illustrations to his latest graphic novellas, and from his early folk rock recordings to his 2017 hip-hop masterwork, Chrome Halo. He’s prolific because of his illness, and he’s prolific to spite it, too. On the penultimate day of mixing Chrome Halo in the studio, he picked up a lung infection from a faulty surgical implant. He kept the meeting with his producer instead of heading into hospital, but had to spend the next month convalescing.

In addition to a recent nomination for an Australian Music Prize for this solo debut, he’s got an anthology of comics on the horizon, and is in talks with a major broadcaster about a reality TV series – both of which are bound up in too many nondisclosure agreements to discuss in detail. He’s balancing all of this with gigging, dating, maintaining a rigorous routine of daily treatments to manage his illness, and trying to stay sober in order to shape up for a future lung transplant.

“I have to be off drugs for at least six months to even get on the transplant list. Then, once I’m on the list, they don’t know exactly when I’ll be able to get the lungs, because they have to become available. And then when they do become available, the question is, Am I sick enough to need them but well enough to survive the operation? Basically, what that means is an indefinite period of not even having weed. It’s sad. It’s like leaving a lover. I love my drugs; I miss my drugs. But I also feel weirdly like I don’t need them anymore.”

It’s the principle of the thing that gets to him; even his doctor can see the advantages of Gronewold’s marijuana use. “The transplant doctor is cool. He was like, ‘I think it’s unfair, especially given everything we know about the use of medicinal marijuana. You’re eating it, which I think is a great sign that you’re interested in risk management. I can see a number of benefits – from anxiety reduction to appetite increase – but unfortunately, it’s international law.’”

The treatments take time; Gronewold takes a combination of 30 pills a day for digestion, gene alteration, vitamin supplements, and antibiotics, supplemented with four inhaled medications administered with a nebulizer and regular bouts of breathing exercises with an airway clearance device designed to encourage the expulsion of mucus from his lungs. He’s drawing a lot, too, making headway with the second in a series of hospital diaries that chronicle various bouts of illness and hospitalization. The first, Sonogram, was self-published in early 2017 and features self-portraits, hospital documents, and horrific vignettes of operation scenes and recovery periods, as well as screenshots of notes and journal entries recorded throughout his treatment. “New infections in my lungs,” begins one entry. “No one can say what they are. If it is what they think it is it could mean months of treatment, but no one can say if it is what they think it is. ‘No reason to panic’ they say.”

While it’s beautifully drawn, Sonogram is a grim, unsettling read. But Gronewold found it therapeutic to keep journals of his thoughts and experiences. The next in the series, Incision, is proving harder to commit to paper. “The second one has been a lot weirder, because the time I was in hospital was way longer, so there are a lot more entries and they sort of became chores. I was so much more depressed, and it was so much harder to give a shit about expressing myself. It would just be repulsive to hear myself at times.” 

It’s a good thing he stuck at it, because the resulting work highlights the difficulty of navigating illness and disability within a complex health care system, not to mention the horror of reconciling his dependence on the pharmaceutical industry. “You don’t get to have rigid views when you’re as sick as I am, because you rely on the state that you hate. I need health care. I need to have a good relationship with doctors that I despise. So many people I see campaigning for social justice are like, ‘Cut toxic people out of your life! Throw poisonous people in the trash!’ But poisonous people are the reason why I breathe every day, so I just can’t do that.”

This is just one of many issues Gronewold has with accessibility politics, and while he’s vocal about disability in his work, he struggles with the idea of being an advocate outside of his own self-expression. “I want to be a complicated disabled person. I’m not really trying to subscribe to a culture without room for grayness.” 

He is asked to speak on panels and perform at events created to reduce the stigma of disability, but the ones he’s agreed to so far have left him with a sour taste in his mouth. “Lately, people are asking me if I’m trying to spread a message about disability. I’m literally like, ‘No, I just am disabled, and I can’t talk about my life without talking about it.’ I think it’s cool that there’s a message getting out, but it’s not a theorem. I’m not writing a dissertation about myself. That’s how people approach these things now, and it kind of drives me nuts.

“There’s a zeitgeist of the identities that matter, which I really notice, and disability is never on the top. Nobody really cares about disability, especially in Australia. They think that everything’s fine here and that there aren’t millions of dollars being cut from funding every year. Only 15 percent of people who apply for their disability support pension actually get it because of how tight the regulations are. People are always inviting me to be part of these communities, but they don’t actually know anything about it; they just want to tick that disability box, and I don’t really care about that.”

He does care, though, enough to return to the subject constantly while discussing both his music and his art. The problem, he says, is that people expect him to discuss disability in a way that doesn’t offend or unsettle them, but for someone who writes lyrics like “What you know about riding in a gurney / What you know about dying when you’re 30?” that isn’t really his speciality; nor does he think it should be.

“I’m trying to talk about gritty, real life, and these panels don’t make space for that. They want to focus on what we can do to move forward, but that’s not my role. I’m the ghost at the feast; I’m here to ruin it. I rain bad energy, and the point is for you to listen to the bad energy. I don’t know why everyone now has to be positive about everything.”

For all the anger and aggression in Gronewold’s work and his public persona, there’s also extraordinary tenderness, particularly in relation to his mother. There’s a track on Chrome Halo called “Real Mom” that begins, “I’m the first son of a single mother / First thing I learned was protect each other,” and continues, “Momma got the VapoRub / Money is not love,” referring to the daily treatments she gave him as a boy.

“At the time there was this procedure where you’d bang on someone’s chest, and she was really good about that. She always made time, which was funny because sometimes she would be drunk when she was doing it. She’d come home after working for almost two days straight with maybe a few hours for a nap in between shifts and be like, ‘Ah, it’s treatment time, it’s treatment time!’ And I remember the stink of alcohol as she was banging on me.”

That close, complicated relationship still persists. Gronewold is saving up to buy her a house; and she is fiercely defensive of him and of disability issues on Facebook. She recently called out an accessibility festival that didn’t have any disabled artists on the bill.

She also went as Gronewold’s plus-one to the Australian Music Prize ceremony. He didn’t win, but she was so proud, he says. “It was a big deal for her. Mom always wanted me to be a singer because I was always obsessed with words and music.” Asked what he’d have done with the prize money if he had won, he’s characteristically pragmatic. “I don’t know. I record at home. I can’t travel; I’m sick. I would just spend it on a house for Mom.” Apart from that house, the only thing currently keeping him motivated is fear.

“I’m waiting for someone to put out a graphic novel about illness that completely outdoes me and my legacy, and I become the Michelle Visage to their RuPaul.” But would that be so bad, really? “No one cares about Michelle Visage,” he says, and in a voice like Daffy Duck, continues,“ There is nothing I care more about than my legacy as an artist.”

He’s only half joking.