As I sit at my kitchen island in my usual work-from-home attire, sipping coffee while assisting my young children with their lessons, a flurry of urgent text messages disrupts my moment of calm:
- “The Governor has canceled school for the rest of the year! I’m actually in tears.”
- “Wow, here we go. Not surprising but it really hurts.”
- “I have no idea how I’m going to survive the summer. I may need to take time off work.”
Soon after, a robocall confirms what I already know. Social media pages are flooded with parents expressing their shared grief over the loss of normalcy. The uncertainty surrounding the reopening of schools, and the return of our cherished routines filled with gatherings and celebrations, has many of us grappling with feelings of loss and despair.
I relate deeply to these emotions. My mother was diagnosed with multiple sclerosis (MS) at age 47, when I was just 19 and in college. Initially, her condition progressed slowly, but as relapses occurred, I witnessed her transformation from a vibrant, independent woman into someone who could barely move her legs and lost vision in one eye. It was devastating. As a first-generation Indian American, I grew up in a home filled with laughter, Bollywood music, and the aroma of delicious cooking. The loss of my mother’s mobility felt like a cruel blow to our once joyful family life.
Planning significant events became a challenge. When it came time for my law school graduation, my peers were excitedly preparing for their parents’ visits, while my mother informed me from a rehabilitation center that her health had taken a turn for the worse. She wasn’t sure she could attend the ceremony. My heart sank. I stifled my disappointment, not wanting her to feel my pain. Thankfully, she made it, but it was only the day before graduation that I learned she would be there. Her limited mobility at the event made me understand her hesitance to travel.
A few years later, she couldn’t join me in India while I tried on wedding outfits due to accessibility issues. As I stood in a bustling shop in New Delhi, tears welled in my eyes. The reality of her illness had altered our lives in ways I never could have imagined.
Now, as COVID-19 sweeps across our nation, the despair that my friends feel resonates with me. I’ve experienced this upheaval before. The uncertainty and unpredictability of life can be frightening. I never expected that witnessing my mother navigate her chronic illness would equip me for this unprecedented situation, but it has imparted vital lessons about living fully amid hardship.
Lessons Learned
First, embrace the joy of planning family vacations or attending events, but recognize that these plans may be derailed by factors beyond your control. Living with a chronic illness teaches acceptance of uncertainty. If things turn out well, as they did for my graduation, celebrate wholeheartedly. If they don’t, like my wedding shopping experience or the recent school closures, it’s okay to feel disappointed. Acknowledge those emotions while understanding that you anticipated the possibility of change.
Next, adjust your expectations and focus on what you do have. My mother may not have been present in India, but she was still alive. Many experience significant life events without their parents, and I learned to cherish the time we do have together.
Finally, release any guilt you may carry for being healthy while others struggle. Appreciating your own blessings can be a source of strength, allowing you to live with gratitude.
Last weekend, my family and I gathered in my parents’ backyard, maintaining a safe distance. The sun warmed our backs as my children played soccer, laughter filling the air. My mother looked down at us, smiling, as I savored her homemade pakoras fresh from the oven. I rode bikes with my kids, their shouts of joy echoing in the air, and I felt a wave of gratitude wash over me. Thanks, Mom.
Summary
Living with a chronically ill parent has equipped me with invaluable lessons that resonate deeply during the current COVID-19 crisis. Embracing uncertainty, adjusting expectations, and appreciating our blessings are crucial in navigating life’s challenges. Even amid struggles, we can find joy and gratitude in our relationships and experiences.
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