I don't like what I'm hearing over Zoom, so I fiddle uncomfortably with my necklace, twisting it between my thumb and forefinger and gradually tugging it forward. The delicate silver links slide along my neck, centimeter by centimeter, until I reach a large knot.
Unclasping the chain, I dig a fingernail into the snag, trying to dislodge the stubborn tangle. It's a relief to focus on something I might be able to fix.
The physician on the screen relates the possibilities for experimental treatments, stating that nothing is a perfect fit. This is a rare mutation, he says, and might not respond to the newest drugs.
We thank him for his time, then disconnect. My mother glances at me, but doesn't mention the consultation we've just completed. Instead, she looks at the still-knotted necklace in my hands.
What are you doing? she asks.
I hold up the necklace, showing her the problem.
She reaches for it, and I watch the movements of her slender fingers — fingers that precisely pleat a saree, that meticulously calculate financial transactions, that gently touch my cheek when I'm troubled. Within seconds, she passes it back, its links smooth and sorted once again.
Photo by Carolyn V. on Unsplash
I have trouble believing it — that this tireless, energetic person who has always worked late into the night, walked five miles a day, and needed no medication apart from the occasional Tylenol, could have this disease.
I have trouble accepting it — that this unfailingly kind and loving person, so full of integrity and honor, could have been invaded by an illness so cruel and rapacious.
I suspect that, in her shoes, I'd fall apart. But she is mentally strong and emotionally steady, even while she feels physically weak. Though she is utterly entitled to do so, she does not create any drama. She does not make any fuss.
Instead, she makes spreadsheets.
There's so much to do, she tells me. Between bouts of intense fatigue, she continues to fulfill her obligations. She examines transactions and sorts documents. She writes lists and instructions and reminders.
This should not surprise me. After all, she's an accountant and successful business owner, methodical in every task she undertakes, from preparing tax returns to compiling financial data to planning myriad family and community events.
I want to dissuade her from doing this work. I want to encourage her to relax and not worry about the ceaseless paperwork of human existence.
But I understand why she's doing it.
She is seeking order in her new reality, stabilizing the slippery balance point between genuine optimism and cautious preparedness. She is building a platform from which to cope with unpredictability, anguish, and frustration.
She is building that platform for me, too — a place of calm we can occupy together.
So I join her there, join her endeavor to manage the uncertainties of this time. Together, we compile old photographs and traditional recipes and family histories. We reminisce and record and journal.
Nonetheless, we're both aware of the limitations of our actions. She knows that she can't collect and order every instruction, item, number, and eventuality. And I know I cannot collect and order each piece of her knowledge and wisdom, each detail of her life, identities, and experiences.
I will never be able to collect, order, and hold all of her.
My mother, not surprisingly, gave me a childhood (and a lifetime habit) of structure and routine. But when I think about her, this is not the sort of order that comes to mind.
Rather, I think of the confusion of childhood, eased by her reading, singing, and talking with me. I think of the pain of adolescence, the rigors of education, the adjustments of marriage, and the perplexities of parenting — all allayed by her genuine interest and gentle advice.
Even now, when I slip into darker spaces, overwhelmed by the crush of human cruelty and suffering, my mother is a counter-melody, drawing me back out, embodying order within the chaos of life. She is deep kindness in a world rife with barbarity. She is graciousness and compassion in an increasingly disconnected culture. She is decency in a society overrun with dishonor and dishonesty.
Without her, I fear I will never find order in the world again.
Placing a bit of vibhuti (sacred ash) on one's forehead daily is an ancient Indian custom, a way to acknowledge the inevitability of one's death. It's not intended to be morbid — indeed, just the opposite. It is an affirmation, an acceptance, that the limited duration of life is what gives it meaning, substance, and value — and that each moment we have on this Earth is heart-rendingly, gut-wrenchingly precious.
It is a reminder that, illness or no illness, we are all terminal.
As my mother and I remain optimistic and hopeful, as we pray for positive outcomes and beautiful miracles, we are also channeling this awareness. Our conversations feel rich, resonant, meaningful. We discuss what's real, what's important, what's true. We don't spend time on froth — and really, we never should have.
And as we talk, she tries to bring order to my future. She encourages me to write more, to worry less, and to heed my internal compass. She reminds me to reach out to family and friends with trust and openness, and to see the best in each person I meet.
As I listen, her voice seems to dig into my fears and frailties — untangling them, coaxing them open, smoothing them all into her dearest hope for me: a lifetime of well-being and happiness.