This Christmas, I’m reminded of my late brother’s parting gift

As this column is published, it’s the eve of the fourth anniversary of my brother Isaac‘s death. He passed away on Dec. 7, 2019, from heart disease related to his Duchenne muscular dystrophy (DMD), which I have, too.

I feel it’s significant, even rare, that someone with DMD departed four days after the International Day of Persons with Disabilities, which is celebrated each year on Dec. 3.

Why Christmas is no longer the same

Until Isaac died, we’d always considered December a cause for celebration. As we grew up, we’d always looked forward to seeing the Christmas tree displayed at home and admiring the festive decorations displayed at Singapore Changi Airport, near where we lived. We also enjoyed listening and singing along to Christmas carols and hymns; Isaac’s favorite was “We Are the Reason” by David Meece.

But since the day DMD claimed Isaac’s life, Christmas has become a season of mourning.

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The Christmases since have mainly been forgettable for me, just a blur in my memory as I struggled with other personal challenges, including religious trauma, the failure of my undergraduate thesis, and an identity crisis that threatened to destroy my life.

But this year, I can finally say that I’ve moved on from the hell of the depression and grief that all those disappointments caused me. I’ve been working at my first job for over a year. I’ve graduated with flying colors with a postgraduate diploma in psychotherapy and counseling. I’m pursuing my lifelong aspiration to be a trained playwright. And I’ve found love in my first romantic relationship.

Isaac’s enduring legacy

Even in death, Isaac continues to influence me in positive and uplifting ways. He wasn’t just a role model; he was a like-minded soul, and we shared many experiences.

Last year, instead of singing Isaac’s favorite holiday song, I performed another with the same title, this one by Calum Scott, at a caroling event for the Enabling Lives Festival. It was my way to commemorate the International Day of Persons with Disabilities and pay tribute to my relationship with Isaac and its impact on me. When elaborating on why I’d chosen to perform it, I shared that it reflected my desire to advance and honor Isaac’s legacy by giving back to others with muscular dystrophy.

I recently turned 28, the age Isaac was when he passed away. As much as it’s been a coming-of-age milestone for me, it’s also reminded me of the temporal nature of what I now enjoy. My romantic partner has been the greatest joy of my life, and not since Isaac have I had someone who could share my most profound emotional burdens. Yet my mind remains fraught with anxiety, fearing that the time I have with her won’t last. After all, it may not be long before it’s my turn and DMD claims my life.

As I think back to Isaac’s life, however, I realize that with the wisdom of eternity, we can love and experience the love of others and live without regrets. After all, in the words of Alfred Lord Tennyson, “‘Tis better to have loved and lost / Than never to have loved at all.” That was Isaac’s parting gift to me.

This Christmas, I’m reminded that love is what makes life worthwhile.

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 or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.