Remembering my late brother, Isaac, who was a kindred spirit
Two brothers shared a Duchenne muscular dystrophy diagnosis and much more
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Aug. 14 isn’t just another day for my family. This year, our conversations were imbued with heartfelt remembrance as we gathered around the dinner table. We celebrated the birthday of my brother, Isaac, even though he was no longer with us physically.
Isaac passed away due to heart failure on Dec. 7, 2019, at the age of 28.
The lavish spread on our dinner table brought us a familiar sense of comfort, joy, and nostalgia as our memories of Isaac filled our hearts, making it seem like he were still there, laughing and enjoying himself alongside us.
Isaac’s name, rooted in the Jewish Torah and the Christian Bible, means “one who laughs” in Hebrew. It’s a name that reflected his essence and the joy he emanated. I’ve touched upon his profound influence on my life in previous writings. Isaac wasn’t merely an inspiration; he was a source of laughter and strength, especially during times that tested our resilience.
Defying the odds
Isaac and I share a Duchenne muscular dystrophy (DMD) diagnosis. This condition presented its challenges, but also deepened our bond. Additionally, we are neurodivergent — Isaac had autism spectrum disorder, while later in life, I was diagnosed with attention-deficit/hyperactivity disorder. This shared journey had moments of pain, too, such as insensitive remarks like “Wow, lightning has struck twice!” But over time, these instances transformed into humorous anecdotes and fostered camaraderie.
Our childhood was a vibrant tapestry of shared experiences. Isaac and I were more than siblings; we were soldiers fighting for survival. We explored art classes together, embraced the thrill of horse riding, dove into the joys of swimming, and ventured on numerous holiday trips. DMD posed certain limitations, but our adventures were mostly bounded by our imaginations.
‘Chariots of Fire’
Life threw its curveballs. A surgery in 2006 aimed to correct Isaac’s DMD-induced scoliosis. Though the surgery was a success, the aftermath was tough on him. His once fervent passions for drawing and painting took a hiatus. Communication, especially given his increasingly nonverbal nature, posed challenges. But like a superhero, Isaac’s indefatigable spirit ensured that he’d rise again. His laughter and joy returned, reminding us of his undying passion for life and his deep-seated love for his family.
Our family home became Isaac’s sanctuary later in his life. While venturing outside became demanding because of his physical and sensory needs, his heart, despite every difficulty, remained full of grace, and his demeanor reflected a calm that few possess. Despite adversity, his radiant smile was a testament to his enduring spirit and remains his legacy.
While some might find the idea of celebrating the birthday of a departed loved one a bit unconventional, for us it honors Isaac’s everlasting impact. It affirms the joy, love, and laughter he instilled in us. Though he may have left this earthly realm, his essence is eternal. With every birthday, we remember and rejoice in the promise of a heavenly reunion. Isaac’s life was, and always will be, a celebration.
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.
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