Our ALS Journey
My ALS Journey
Welcome to this space—a candid and heartfelt chronicle of life lived fully despite a diagnosis of Amyotrophic Lateral Sclerosis (ALS). This blog is an unfiltered look into my personal journey, sharing the reality of navigating the challenges of ALS—often referred to as Lou Gehrig's disease—one day, one breath, and one victory at a time. Here, you'll find posts that cover the full spectrum of this experience:
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Daily Adaptations: Practical insights into assistive technology, managing physical changes, and making adjustments to daily routines.
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Emotional Landscape: Honest reflections on resilience, grief, hope, and finding strength in vulnerability.
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Small Triumphs: Celebrating the moments of joy, connection, and purpose that continue to define life.
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Community and Support: The critical role of family, friends, and the broader ALS community.
My aim is not just to document a battle, but to foster connection, raise awareness, and offer encouragement to others facing similar paths. Thank you for walking this journey with me.
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Friends and Family
Once my diagnosis became more certain, we faced the painful task of letting people know. First, I want to say how deeply grateful I am for the love and support I’ve received from friends and family. I truly could not survive without my husband and my mom—I am indebted to both for everything they do, day in and day out. And of course, my babies—Shiv and Kesh—who I live for. Also, all the friends that have reached out to see how I am doing and show support.
That being said, not everyone responded with support or kindness. Some disappeared. Others struggled—or refused—to respect my wishes and needs. This hurt me deeply, and I became preoccupied with their behavior, forgetting the immense love and support I was surrounded by.
The sad reality is that some people are inherently selfish, and I cannot control that. People behave how they want to behave. I’m learning, still, how to make peace with others' actions without letting it consume me. I'm learning to release expectations. And most importantly, I’m learning to set boundaries—limiting interactions with certain people without guilt or explanation. I don’t need to satisfy the needs of others at the cost of my peace.
I want to be more present and appreciative of those who have been there for me—emotionally, mentally, and in the day-to-day.