A close friend’s death prompts reflections on my own life and mortality

Last week, I lost my dear friend Aloysius Teo, who passed away at the age of 40. Aloysius didn’t have Duchenne muscular dystrophy, the progressive genetic condition I was born with, which weakens muscles over time, including those used for breathing and heart function. I use a wheelchair and depend on a BiPAP ventilator around the clock.

His death has made me confront something I never expected about growing older with Duchenne. I spent much of my childhood knowing that my life could be shorter than others. My older brother, Isaac, who also had Duchenne, died from heart failure at the age of 28. Somewhere along the way, I formed an unspoken idea of how life would unfold: I would leave first, and my friends without Duchenne would continue growing older.

A Chelsea-themed plaque that Aloysius Teo gave Shalom Lim. (Courtesy of Shalom Lim)

I met Aloysius in 2019, when we were schoolmates studying for a bachelor’s degree in criminology at the University of Liverpool’s Singapore campus. We bonded over football and our shared love of the Chelsea Football Club. He once surprised me with a Chelsea-themed plaque he had bought for me, a small gesture that said much about the friend he was.

Aloysius graduated in 2020, during the COVID-19 pandemic. We reconnected the following year and grew closer, watching Chelsea matches together over fast food and root beer. (I stick to root beer because of my Duchenne-related heart condition.) Whenever Chelsea disappointed us, Aloysius’ running joke was, “Misery loves company.”

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I was 23 when he and I became friends, and he was almost a decade older. I never thought about which of us would live longer. Yet growing up with Duchenne had quietly taught me to assume that friends without the condition would have more time than I would.

In October 2023, Aloysius gave me a personalized Chelsea jersey that said “SHALOM 28.” I was 28 years old at the time, and it was the number of my favorite former team captain, César Azpilicueta. Additionally, it was Isaac’s age when he died. I still have that jersey, although its meaning has changed over time.

A truth I never expected

Shalom Lim, left, with his close friend Aloysius Teo in Singapore in 2024. (Courtesy of Shalom Lim)

Aloysius knew how much Isaac’s death had affected me. During a difficult period in my life, he encouraged me to keep going and believe that more was ahead in life.

Earlier this year, I lost another close friend, Timothy Chan, who lived with Duchenne, too. Losing Tim hurt deeply, but there was a painful familiarity in confronting mortality for someone who shared my condition.

Aloysius’ death has prompted a different reflection. I expected friends without Duchenne to grow much older. I imagined them having years I might never have. I never pictured myself being the one grieving them.

I turn 31 years old this month. Aloysius always believed I would outlive Isaac, and he was right. But neither of us expected that I would outlive Aloysius, too.

Living longer with Duchenne has given me the opportunity for friendships, work, advocacy, and other possibilities my younger self couldn’t picture. It has also brought losses I never thought I would be here to face.

For years, survival meant reaching my next birthday. Now I’m learning that living longer also means carrying forward the people who helped me do it.

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