My body clock ticks louder because of my Duchenne MD
How watching 'Tick, Tick ... BOOM!' anew spurred reflections on my life today
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Nearly two years ago, I authored a column for this website about my reflections on the semi-autobiographical rock musical “tick, tick … BOOM!” from American composer, lyricist, and playwright Jonathan Larson (best known for “Rent”). I’d just watched the 2021 film adaptation, directed by Larson’s fellow Broadway legend Lin-Manuel Miranda and distributed by Netflix.
I related to the dilemma faced by the story’s main character, Jon (based on Larson), because of my experiences growing up and living with Duchenne muscular dystrophy for more than 25 years. In the show, Jon is anxious about his coming 30th birthday because he feels he’s yet to accomplish anything.
I too feel a time pressure. My understanding of time differs from most people’s because of my condition, as encapsulated by Alison Kafer’s concept of “crip time” — which normally refers to disabled folks’ need for more time to accomplish tasks.
Two Saturdays ago, I attended a riveting production of the musical with an all-Singaporean cast by Sight Lines, an immersive theater group, at the KC Arts Centre, home of the Singapore Theatre Company. It spurred me to remember the film and view it again.
When I watched the movie in October 2022, I’d just started my part-time community partnerships role at K9Assistance, a charity aiming to provide assistance dogs other than guide dogs to autistic Singaporeans and those with hearing and mobility disabilities. It was also when I’d begun writing this column. But it was an uncertain period in my life; I’d barely survived dengue three months prior, and it’d taken a toll on my emotions.
Fast forward 22 months, and I’m facing yet another uncertain transition. Although I was appointed a board director at K9Assistance last month and have some income from Bionews, the parent company of this website, I’ve not had a steady salary since April 30, when I left my K9Assistance staff position because of ill health.
The anxiety of my financial predicament has made it difficult to find much hope for a life together with my visually impaired partner, as we both struggle to plan one that’s independent from our immediate families. My brief hospitalization in late May, because of a bacterial infection on the skin of my foot (triggered by the unclean removal of an ingrown toenail), didn’t help.
The pressure of time
Yet when I again watched actor Andrew Garfield’s Oscar-worthy portrayal of Jon, three days after I saw the live staging, I found a unique parallel between my journey and that of Larson.
The opening number of “tick, tick … BOOM!,” “30/90,” is set a week before Jon’s 30th birthday and offers a candid take on his anxiety over the milestone, since he feels he hasn’t achieved anything of note in his dream career, musical theater, and that the clock is ticking fast. He attempts to balance his ambitions with a job as a waiter; a promising romance with his girlfriend, Susan; and his friendship with his ex-roommate, Michael, a childhood pal. All the while, he’s struggling to pay the rent.
It’s also just a few days before a workshop performance of Jon’s romantic and futuristic musical “Superbia,” which he’s been working on for the past five years. The workshop, Jon hopes, will draw financial backers for a potential full production; among the audience would be famous Broadway producers and legends of the form — including his idol, Stephen Sondheim. But he hasn’t even started writing the musical’s most vital song, to be performed by Susan in Act 2.
His anxiety set the tone for the rest of the film. I thoroughly enjoyed every moment of it. Now my 30th birthday, in about a year, is just around the corner. Like Jon in the musical, I think I still haven’t done anything noteworthy, even though I’ve always dreamed of becoming a playwright.
I’m just getting started on that path with my two-year theater-training program here at a disability arts center, ART:DIS. Even though my course is fully sponsored, I’m struggling to find a day job, as Jon did, to pay the bills and support my endeavors in my dream field.
My recent hospitalization, brief as it was, and Larson’s tragic death at 35 (he had undiagnosed Marfan syndrome) helped me put things back into perspective. I must care for myself to get where I want to be. The clock in my body ticks louder as I grow older with Duchenne, so I can’t afford to live life on the edge as Jon did. Nevertheless, his story tells me one thing: It’s never too late to pursue our dreams.
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.
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Comments
Patrick Moeschen
This is a great column and an excellent reference to an amazing show. I also measure things by time and have found a great connection in reading this. AWESOME.