As I find myself seated at my kitchen counter in my usual work-from-home attire, sipping coffee while guiding my kindergartner through snap words and assisting my second grader with phonics, urgent text messages begin to pour in from friends:
- “The Governor has cancelled school for the remainder of the year! I’m actually in tears.”
- “Wow. This is it. Not surprising, but it really hurts.”
- “I don’t know how I will manage the summer. I might need to take a leave of absence from work.”
Then comes the automated call from the school, confirming what I already knew. I hadn’t even checked the local social media pages where parents were already sharing their collective anxieties about the long stretch of spring and summer ahead. The uncertainty of whether schools would reopen in the fall and when our lives—filled with barbecues, weddings, and social outings—might return to normal has left many of us grappling with grief for what we once knew and despair for what is now.
I’m familiar with these complex emotions. My mother was diagnosed with multiple sclerosis (MS) when I was in college, at the age of 19. Initially, her condition progressed slowly, but as time went on, I witnessed my once active mother, who had worked night shifts, struggle with mobility and vision loss.
It was both devastating and heartbreaking. As a first-generation Indian American, I was accustomed to vibrant gatherings at our home in New Jersey, filled with the sounds of Bollywood music and the scents of samosas and pakoras. The sudden shift in my mother’s health felt like a cruel disruption to our otherwise idyllic immigrant life.
Planning significant life events became a challenge. When it came time for my law school graduation, while my peers eagerly anticipated their parents’ visits, I received the unfortunate news from my mother that her health had deteriorated, and she was in a rehabilitation center. I held my disappointment close, not wanting her to sense my sadness, though she assured me of her pride. Miraculously, she made it to my graduation, but her limited mobility was a stark reminder of what we had lost.
Years later, as I prepared for my wedding in India, she was unable to join me due to accessibility issues. Standing in a packed shop in New Delhi, surrounded by other brides, I felt a wave of desolation wash over me. My mother’s illness had altered the course of our lives irreversibly.
The current COVID-19 pandemic has magnified feelings of hopelessness that I have been grappling with for years. I’ve faced this upheaval before, and the fear of uncertainty is familiar. Watching my mother navigate her chronic illness has surprisingly equipped me with insights for this unprecedented time, teaching me how to find meaning amid hardship.
Lessons Learned
First, embrace the joys of life—plan those family vacations and buy tickets for future events—but recognize that they may be canceled due to circumstances beyond your control. Living with a chronic illness has instilled in me the understanding that uncertainty is a part of life. If things go well, as they did at my graduation, celebrate those moments. If they don’t, like my wedding preparations, allow yourself to feel disappointed, but know that you’ve already accepted the potential for change.
Second, adjust your expectations and appreciate what you currently have. My mother couldn’t be with me in India, but she was alive. Many individuals experience milestones without their loved ones ever witnessing them.
Third, release any guilt you might feel for being healthy while others are not. Acknowledging your blessings can be a source of strength, enabling you to live with gratitude for what you possess.
Just last weekend, we gathered in my parents’ backyard, maintaining a safe distance. The sun warmed our backs as my children played in the grass, and my mother smiled from the deck, enjoying her homemade pakoras fresh out of the oven. Later, as I rode bikes with my kids, their joyful shouts echoed in the air, reminding me of the simple pleasures in life. In that moment, I thought of my mom and the resilience she has instilled in me.
In a world that often feels overwhelming, these lessons from my mother’s journey offer a beacon of hope. For further insights on navigating the intricacies of family planning, including at-home insemination options, visit this excellent resource.
In summary, living with a chronically ill parent teaches us to navigate uncertainty, cherish the present, and cultivate gratitude amidst life’s challenges, skills that are particularly invaluable during times like these.