Rediscovering My Faith After Losing My Brother to Duchenne MD
A columnist examines how trauma has affected his views on faith, chronic illness
On Dec. 4, I performed British singer-songwriter Calum Scott’s 2017 pop ballad “You Are the Reason” at a live caroling session with ART:DIS, the first organization in Singapore to pioneer the artistic development of members of the disabled community.
The performance was part of the annual Enabling Lives Festival organized by SG Enable, the central disability agency in Singapore, and held every year in December as part of national efforts to commemorate the International Day of Persons with Disabilities on Dec. 3.
Because I grew up a Christian, my parents thought I would be performing the classic worship song “We Are the Reason,” written by U.S. Christian musician David Meece to honor the day Jesus was born.
As much as I’m deeply attached to, and nostalgic about, that poignant pop hymn, I felt like doing something different. All of my ART:DIS vocal students were performing Christmas carols and classic hits.
My struggles with religion
Ever since my autistic brother, Isaac, passed away from heart failure on Dec. 7, 2019, the final month of each ensuing year has been the most excruciating for me. This was compounded by my clinical diagnosis of a mood disorder in May 2020, shortly after the COVID-19 lockdowns began in Singapore.
To make matters worse, I lost him only weeks after I had developed religious trauma syndrome from the most excruciating spell of my Christian faith journey, which I have not yet recovered from.
Throughout my life growing up in the church, there has been a diversity of opinions about disability, disease, and illness, especially incurable ones. Theological positions on the subject remain shrouded in confusion and mystery.
From my experiences with Singaporean Christianity, disability is not just an uncomfortable and sensitive topic to broach, but also a stigma and taboo in moral discussions and religious contexts.
That said, I grew up with the idea from my parents that disability is a divine mystery, and God’s will is always sovereign, no matter how adverse our life circumstances may turn out to be. This is what I have always believed to be true.
As I got older, moral assertions attributing the existence of my incurable condition to the sins of my parents and grandparents began to grow louder. These arguments would cherry-pick portions of Scripture to prove that we were not doing enough as a believing family to access our God-given right to divine healing.
Perhaps these were well-meaning expressions of ministry to help alleviate our emotional grief. Nevertheless, as the outside voices became bolder, these conflicting assertions brought me great emotional distress. This would exact a heavy toll on my mental health, culminating in my religious trauma in October 2019.
In December 2019, Isaac passed away. It felt like the deadliest dagger had pierced my soul, and it came as an unbearable shock. I recall thinking, “Maybe if I had prayed harder or confessed my sins more, he would still be with me.”
As Isaac was a nonspeaking Duchenne muscular dystrophy survivor, he could not articulate, let alone confess, his sins to God. Thus, I felt largely responsible for his continued existence. Believing that he could have still been here if I had only been more faithful in praying for his healing was the most painful thing I’ve had to experience in my life to date.
Life after Isaac’s death
While the years since his passing have been the worst nightmare I’ve ever faced, there is still a glimmer of hope that springs eternal in every trial that life brings us.
My brother’s passing from Duchenne MD left a gaping hole in my heart I could never wish to fill. It also made me realize that I could no longer depend on him for my belonging, inspiration, and strength. I had to look to God and my local Duchenne community.
In November 2020, I started a faith-based support group for my fellow MD followers of Christ, and we’ve grown from strength to strength. I’ve also gotten Isaac’s story featured on the local Christian website Salt & Light.
As for me, my life story was published in The Straits Times in August 2020. I’ve also grown as a disability advocate, receiving the Advocate of the Year Award from the AWWA Community Integration Service in November 2021.
Last September, I found a job working at K9Assistance, an assistance dog charity. I also wrote and performed a reading of my second poem, “Breaking the Fourth Wall,” at an ART:DIS event last November. As of this month, I’m among the most prominent ambassadors at the Muscular Dystrophy Association (Singapore).
None of this would have been possible were it not for Isaac. His life may have ended, but his spirit and his story remain alive through me. My dearest brother, Isaac, thank you for being my reason. I wish you were here to celebrate with me. I miss you every day.
Note: Muscular Dystrophy News 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 or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
Hi Shalom. I stumbled across your column and read your wonderful story. I was certainly moved and felt that, not only did you glorify God, you honoured your brother, Issac. God works in mysterious ways. As I now journey in my mid 50's with OPMD, I realize that the "Peace of God" has much more meaning than I understood, even a year ago.
Sorry, I meant "Isaac"; hard to type with blurry eyes ;)
Vikki A. Stefans
Bless you so much for sharing this! So sorry for your loss and your trauma, and so grateful for your witness to the value of our faith despite all of the flaws of our religion.