I was six years old when I first became acquainted with death. It was a sunny morning, and I had had an epiphany. Perhaps it was spurred by the visit of a tarantula – not an uncommon sight around our home near the last stretches of India’s ancient Western Ghats.
“Do we just go on like this forever?” I wondered. I stood in front of a picture of the Holy Family – Jesus, the Virgin Mary and Saint Joseph – framed by a fallen feather from a peacock my mother had met. The Tamil god Murugan rides a peacock. My family is mixed-faith, and I was counting on all the divine help I could get. I addressed the adults in the frame, while keeping my eye on the feather: “Mary and Joseph, please let my Amma and Appa live forever.”
Satisfied with my prayer, I ran back to find my mother and told her of my deal with god. Amma wore a sad, sweet smile.
It was around the same time she would be diagnosed with a rare condition that happens to one in a million. At first, I didn’t know what was happening, but soon she became very ill.
The hospital was run by her family, and because I was so attached to her, my family decided to leave me in the hospital with her.
I remember the days vividly. Since I was so young, I didn’t know how to count time. When Amma was taken for a major scan, one of the nurses taught me how to read a clock so I would know when she’d be back.
I would soon go on to learn how to take a pulse, find a vein and even give an injection. Over the next weeks and months, my vocabulary expanded. “Idiopathic thrombocytopenia purpura,” I proudly told Amma the name of her disease.
My mum was a trained zoologist, and my brief childhood in the far south of India was a magical one filled with many wonderful creatures, some of whom ended up pickled in formaldehyde in her lab. I would spend my evenings after school in her lab, standing on tiptoe as my mother dissected a rat or a frog in front of a group of horrified students.
This was in the late 1990s, before India banned the dissection of animals – a ruling my mum strongly disagreed with. Later in life, when she missed a good dissection, she would tactfully seize a bug and call me for a live science lesson. “This is the proboscis,” she would point to its front. “And this is the tracheal system – this is how insects breathe from their sides.” I would nod, even though I was concerned for the bug’s fate.
I would grow up taking great care not to step on insects. When I found any of god’s smallest creatures trapped in my home in the Ghats – one of the most biodiverse regions in the world – I would release them carefully into the wild.
Idiopathic, Amma told me, means unknown, while thrombocytopenia is a low count of platelets – essential to clot blood.
My mother lived her entire life on a count of two, when 150 is at the lower end of the normal human range. “Purpura”, she explained, is the name for the purple patches that were all over her body from burst blood vessels.
An autoimmune blood disease with no known cure is a slow decline to death. My mother knew it better than most. Every Christmas visit was special because we didn’t know if it would be her last. She would make me extra batches of munthiri koththu, a Tamil Christmas sweet, perhaps knowing that her time was limited.
Amma would eventually go on to manage this disease, but in 2013 she was diagnosed with chronic myeloid leukaemia, a rare form of cancer.
I remember during an oncology visit, my mum was asked to do a bone marrow test. They’re excruciatingly painful. She walked back with a smile. I was standing impassively, having quietly fought back tears. My mum must have seen the pain behind the stoicism because she decided to give me a science lesson.
“Jenyma,” she said, trying to cheer me up. “Cancer is a miracle of nature. Cells divide and multiply, and sometimes they just don’t know when to stop. Isn’t that incredible?” I nodded.
Right until she passed away in 2018, she looked at her disease as a marvel of nature and gently explained to me what was going on in her body. She would have enthusiastic discussions with her oncologist as I stood quietly in awe and dread. After she died, her doctor would let us know he missed their chats.
Conversations with my mother were always about science. She loved Darwin, “the missing link”, dinosaurs and frogs, and I’m sure that, in a different life, she would’ve loved to have researched the human genome.
When we still lived in the Tamil countryside, Amma would take me to the rooftop, point out comets and name them as she fed me dinner. She taught me how to read the Northern Hemisphere constellations and some southern stars visible from the subcontinent’s land’s end. When I go home now, I lie on our rooftop after watching the sun set over the Indian Ocean. I take comfort in the fact that the same stars still gleam above me, as they did when Amma was alive. I name them in my head.
It’s been eight years since Amma died. I still haven’t been able to eulogise her properly. Losing her was 21 years in the making. My divine pact had failed. I had been anticipating grief for so long, I didn’t know what to do when it arrived. My memories of my mother have been so coloured with disease that it’s taken me a long time to cherish the funny, happy scientist she was, and what an incredible privilege it was to grow up the way I did.
My mother never felt sorry for herself despite effectively being on death row with two rare diseases. Tamil women are famously stoic, so I felt I had no right to any self-pity either.
I remember our last visit to the hospital after the cancer began spreading all over her body. It was the day after her birthday. We ran into a chameleon on a tree. He was in the midst of changing his colours. Amma and I stopped and watched.
It was our last trip. She would die 11 days later. I wondered if Amma, in her prime, would’ve had him pickled in her lab. She looked at him happily turning colour to hide from us. “He’s beautiful,” she said. We left him to soak in the sun.
