What ‘tick, tick…BOOM!’ Means to Me as a Duchenne MD Survivor

Warning: This column contains spoilers for the Netflix musical film “tick, tick…BOOM!”

In my last column, I wrote about my relationship with the concept of crip time, which addresses how time works differently in the lives of disabled people. Crip time has enabled me to accept who I am as a person with Duchenne muscular dystrophy after years of grappling with and questioning my socially assigned label of “disabled.” Since then, disability has become a source of pride for me and my identity.

Recently, I caught an episode of “The Daily Show” with Trevor Noah on YouTube. He announced a few weeks ago that he was stepping down as host of the show to pursue his dream life on tour and spend more time with his family in South Africa. In the “Beyond the Scenes” footage, he spoke about how time, unlike most other resources, is something that, once used, we can never get back.

This made me think about crip time, particularly my brother’s passing from Duchenne in December 2019. My life has never been the same.

Isaac’s demise was shocking to me. I recall him telling me in dreams to go and live my life well shortly after the funeral. I never got the chance to say goodbye or tell him I loved him before waking up to the news that he was gone. The years since have been the darkest and most excruciating of my existence.

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30 Days of MD: Time Is a Valuable Teacher in Grief

I’ve always heard the phrase “life is short” used in my social circles. But it didn’t feel so personal and real until my first close brush with death when I had severe pneumonia in 2011. This past July, I almost succumbed to severe dengue before writing and publishing my first column with MD News Today. At the same time, I’ve had to process my brother’s progressive health decline and have struggled to deal with his absence from my life over the last couple of years.

Crip time and ‘tick, tick…BOOM!’

Last year, “tick, tick…BOOM!” was released on Netflix. It’s a film adaptation of the semi-autobiographical musical created by the renowned late playwright Jonathan Larson, fondly remembered for his acclaimed Broadway musical “Rent.”

The movie focuses on Jon, played by Andrew Garfield, who is weeks out from his 30th birthday and living in SoHo. He struggles to balance adulting, love, his passions, and his desire to achieve his musical dreams before he turns 30.

Since watching the film, I’ve repeatedly listened to its soundtrack. The themes expressed in tracks like “Come to Your Senses” and “Why” struck a deep chord within me. What resonates most is Larson’s intimate understanding of those he loved most, a rare gift not many people have.

“Come to Your Senses” is a romantic song meant to be performed by the female protagonist in Jon’s unproduced musical “Superbia,” which he workshops in “tick, tick…BOOM!” But it’s also a homage to his former long-term partner, Susan. Even if you’ve never been in a romantic relationship, the song has an uncanny way of depicting love as a powerful and universal emotion that transcends age and background. It deeply touches me and causes me to reflect on all of my relationships.

“Why” is a song about Jon’s lifelong friendship with Michael, who had just shared that he was HIV-positive, a death sentence at the time. The lyrics describe Jon’s fondest memories of Michael, from when they first performed together as children to being on the cusp of turning 30 and struggling for a big break.

After the song, Jon realizes that he must make the most of his time left with Michael and rushes to see him again, knowing his friend is distressed about his terminal illness. It may have been the last time Jon ever saw him, driving home the key thrust for me: I wish I had cherished the two weeks of my brother’s company before his unexpected departure.

Although Larson’s work has become well renowned, he never got the opportunity to witness his finest hour. He passed away at age 35 from a sudden aortic dissection the night before “Rent” opened off-Broadway in January 1996.

Larson may not have lived with a health condition as debilitating and disabling as muscular dystrophy. Still, like most Duchenne survivors, he lived a very short life compared with most in his generation.

Hence, I believe “tick, tick…BOOM!” is the perfect advertisement for crip time. It has spoken to me like no other film, encouraging me to pursue my dreams while I still can — like my brother would’ve wanted.

I’m turning 27 on Oct. 25, which means I’m only a few years away from my 30th birthday. I hope to have achieved something truly spectacular by then.

Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.