When I was 11 years old, I was friends with two sisters who lived down the street. They were a few years older than me, and they were obsessed with a musical called RENT.
I didn’t really understand a lot of what was going on in RENT at first. They played the soundtrack for me, singing and dancing along to the songs, and soon I became obsessed with it too. I wasn’t quite sure what drew me to it, but over time, I grew to connect with the soundtrack in new, evolving ways, and eventually got a chance to see the show live.
RENT was my earliest introduction to queer culture. Though I can identify problematic elements in it now, and I wish the story had been written by someone with lived experience of being LGBTQ+, it meant a lot to me to see inclusion back then, especially as I was exploring my own identity.
I remember learning that the creator, Jonathan Larson, died tragically just before the play opened.
But it wasn’t until I saw the new Netflix movie tick, tick… BOOM! that I finally looked it up and learned the details of what happened—and found out that Jonathan Larson actually died from medical neglect of the same type of chronic illness that I have.
Larson died from complications of undiagnosed Marfan syndrome, a genetic connective tissue disorder similar to Ehlers-Danlos syndrome, which I was finally diagnosed with at age 33 after decades of misdiagnosis, gaslighting, and dismissal from the medical establishment.
Before he died, Larson went to the ER twice for severe symptoms and was sent away, told it was just stress, the same way I have been turned away by doctors so many times. He had an aortic dissection and lost his life because no one diagnosed or treated it. He died at almost the same age I am now.
It’s difficult to describe the feeling of learning that a creator you’ve admired since childhood died at your age from the same type of disorder that you have. And that he most likely wouldn’t have died if doctors had properly treated him instead of dismissing him. Especially because his creative journey also mirrors mine in many ways. Like Larson, I spent most of my 20s writing a passion project.
Mine was a memoir about being chronically and mentally ill. I wanted to share my story with the world and maybe even change it a little. I spent years working on my memoir, exhausting myself and putting everything I had into it when I was already sick and struggling.
I felt like my time could be running out as my chronic pain kept getting worse and no one knew (or seemed to care) what was happening to me, including the doctors I went to for help.
And just like Larson, I was told my work was promising, but that there was no market for it. Agents told me that I wasn’t famous enough to write a memoir and there was already enough published about illness.
I tried to publish some other projects and ultimately turned to small presses to share my work. I also started my own press to help make sure there were platforms for disabled people like me to share our stories.
A lot of creatives will probably see themselves reflected in tick, tick… BOOM! The sacrifices we make for art. The desire to live our dreams and tell our stories while it feels like the world is passing us by and there’s never enough time. But I don’t want to romanticize what happened to Larson the way others might be tempted to.
Even a white cis man in the 90s got dismissed by doctors and didn’t get a chronic condition diagnosed or a life-threatening complication of it treated. Medical investigators determined that his death was preventable if doctors had taken him seriously.
His story could have been my story. It could still be my story.
I wish tick, tick… BOOM! had spent more time on what happened to Larson. I think it would have given the movie and the autobiographical parts of his story deeper, and essential, meaning.
It would also challenge the urge to view his death off as an unavoidable tragedy, one that we can look back on as “inspirational,” which is what mainstream, stereotyped stories around illness tend to do. Larson had a chronic condition, and lack of diagnosis and treatment is what killed him.
Larson’s death was another tragic failing of a broken healthcare system. And it shouldn’t have happened. It shouldn’t keep happening.
Misdiagnosis and gaslighting of chronic illness is a long-standing, pervasive issue that has been well-documented and proven, yet almost nothing is being done to address it outside of advocacy movements in the chronic illness community.
According to The Marfan Foundation: “His family…has been involved with the Foundation for more than 20 years to help raise awareness of aortic dissection and its underlying causes and educate [providers] so that others can avoid the same fate as Jonathan.” Even having clear signs of the disorder, as I do with mine, no one diagnosed him.
The Marfan Foundation also notes that “people with Marfan syndrome are at up to 250 times greater risk of aortic dissection.” That’s why having these diagnoses in the first place is so vitally important. The Genetic Aortic Disorder Association agrees that “knowledge and awareness is essential to saving lives like Larson’s.”
There’s even a petition on change.org that calls on the film to include that Larson’s aortic dissection was caused by undiagnosed Marfan syndrome. A few added words could make a big difference.
Like Larson, I’ll continue to write and create as long as I can. I’ll share stories about my experiences of being disabled and marginalized. Even knowing I have Ehlers-Danlos syndrome doesn’t mean anything will be different for me. Connective tissue disorders have been historically underfunded and neglected despite how common they actually are.
Many of us are struggling and losing our lives to these illnesses because of the lack of awareness and treatments for them. Most doctors know little to nothing about them, and if I had a complication like Larson’s, I’d likely be sent away the same way he was decades ago. It’s been happening to me my whole life.
He wanted to tell stories that matter and raise awareness around important issues. That included HIV and AIDS, conditions that have also been historically neglected by the medical establishment.
I wish people were talking about this part of Larson’s story, but chronic illness is often erased from representation in popular culture. I think tick, tick… BOOM! is a wonderful film in many ways, but it’s missing a crucial element of representation—the illness and misdiagnosis around Larson’s death.
We don’t need Larson’s story to be tied into a neat bow. Life doesn’t work that way, and that’s something I think Larson was trying to say with tick, tick… BOOM! all along.
The details of what happened to Larson and his misdiagnosis matter to chronically ill people like me who, decades later, still risk the same thing happening to us. We need to be talking about chronic illness as a society, in our media, and in these stories, or nothing will ever change.
tick, tick… BOOM is available to watch on Netflix
Image credit: tick tick… BOOM!
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