Trigger warning: This article contains mention of suicide.
Subjective truth is the only valid starting point. For any discussion. Of anything we speak or write. And my truth, when I turned 18, changed from being a potential overachiever to a terminally ill human — forever in the state of a Potential.
Of course, depression followed and I even attempted to ‘end it all’. But this prose is not about me.
This is about my mother. And how, I cannot bracket my illness from my mother’s life-experience. Especially in the current times; which are more like what-I-like-to-call my Transplant Phase; when I was homebound, and visiting hospitals and watching movies on a smartphone lying with my arms stuck to machines. And waiting for a private pandemic to end.
Today when there is a societal pandemic around, things are a little better for me. Maybe. But the ghosts of death still hover. Even more acutely than before. The pandemic is taking a toll on comorbid persons. People are dying like proverbial flies. Like molasses stuck in frozen lava – craving for oxygen. Literally.
This is a grim picture. But that’s how my mood is; and I intend to be honest. Honest to myself and my words, which are all I have. I think I am modern day Kierkegaard, who has taken on a personal mission of fighting for the second movement of Faith— much more nuanced than Sartre’s concept of absolute freedom, for which I have many words to speak. But later.
Coming back from the obtuseness of dead philosophers, this prose is about my mother. About her one-life moment, which changed her life and made her more reclusive than she was perhaps destined to be.
One day, I became ill. And her world changed. A demon of fear entered her life. She became the mother of a sick child — a burdensome label. And I try to imagine… what her life has been since then.
It has definitely not been ‘normal’. But there are no normal lives. All lives are contortions of a popular collective ‘normal’ (Zeitgeist, Hegel would say) which can only be aspired for. And yet, when you are a mother of a kidney patient, the world changes for you. Fundamentally. Your life becomes more ‘abnormal’ than others.
My mother has not studied much. She, I think, did not study beyond Class 8. But it was expected in the 1970s in villages. India was under the shadows of the Nehruvian brand of socialism and his daughter’s tantrums. Not that it concerned my mother much. Girl education was not the agenda. She lived a normal, apolitical life of a young girl in a countryside village in North India with mosquitoes and houseflies. And played with her brothers in vast fields of wheat, sugarcane and mustard. And when she turned 18 (or was it 16?), she got married and moved homes. As expected.
She married an Airman, who couldn’t stay in one place, and hence she traveled — sort of. From Guwahati to Amla to Delhi to Chennai, she shifted places every four years, and made new friends and spent time with them singing hymns for Hindu deities. And thus, time passed. As it does for people, in general, who have to make the best of what they are given.
Of course, incidents happened. But life was normal. And once, I even took on the coat of the caretaker.
We used to live in Amla, then. And once her arm got fractured. I remember it vividly. My parents had to leave for Delhi once —where most of my uncles live; and where we thought my mother would be treated best. Those were confusing times. My first encounter with illness in the actual sense of the word. And of course, a view of my mother’s pain. For, for me, earlier, she had always been a provider, someone who took care of me, who didn’t need help.
Those were confusing times. My first encounter with illness in the actual sense of the word. And of course, a view of my mother’s pain. For, for me, earlier, she had always been a provider, someone who took care of me, who didn’t need help.
But after she herself became helpless — in turn making us helpless — I came to know new things about the world; as we do when we grow. That the world is replete with Dukkha (suffering). And we are the ones looking for unachievable things. Like a kind of anti-Schopenhauerian ‘happiness’. Like a weird sense of glory — of being accepted by others. Like peace in the midst of continuous movement.
(Pardon me for the sardonic tone. Through successive essays, I want to propagate a sort of Levinasian community-living in which happiness is found in simple things. Fight against Sartre’s idea of Absolute Freedom—a limited perspective of a young man formed after a hasty misreading of Hegel and Heidegger.)
Not that the broken bone affected her much. In appearance. She is a strong woman. Every mother is, to her son; I guess. But of course it did. And not because her arm hurt. No. Her concern was she did not want to leave us alone — two brothers. And yet, she had to. She had to visit Delhi — the hub of medical sciences then. And we had school. And I remember, every day she would disturb a neighbour of ours, who would check on us and assure her that things were alright.
A mother’s anguish. Ah.
When she came back, rather too early, I remember, she became a bit dependent on us. Sort of. Father had to go to the office – he had burned through his leaves. And there were house chores, and I had stopped going to school by then — concluding it to be a waste of time. So I was mostly home. With my mother.
I learned how to do her hair. And sweep the house. And even cook Maggi or boil eggs — normal things everyone should be able to do. Normal things parents in India ‘used to’ keep their children away from. Those moments are stamped in my mind. The way she would watch the two of us whenever we picked her broken arm and move it up and down. And used a pen to scratch the insides of the plaster. The way she chattered on the phone about how I knew how to knot her hair. And the way… we would gather and eat the oily but delicious food brought from cantonment mess.
Not that it mattered much — her broken arm. She started sweeping soon. And cooking and tidying up the house. And once she even slipped and fell. She stopped sweeping for a few days, and then started again. She could not let me and my brother do ‘such tasks’.
No. Please do not look at these incidents from a sociological angle. Mothers do what they do. The difference between different mothers’ responses is epistemic. An American mother has been socially trained to train her kid for the tough life ahead. An Indian mother to protect. But the core content (if there is something like ‘core’) of mothers’ love around the world is the same. It reeks of sacrifice. And Faith.
But of course, my mother was not an idol of sacrifice. She was not a Bollywood-mother — overtly ideal and emotional. She had hopes in her heart — like all humans. Of seeing her kids married, happy and progressing. Of having a daughter-in-law. An extended family. A series of celebratory functions that busy us with their ennui, and for most humans, define what so-called-life is.
And of course, she wanted to see her son take care of her when was old.
But things reversed when I was diagnosed with chronic kidney disease. From a mother of an over-achiever who was going to show her the world, she turned into a mother of a terminally ill child. Her hopes quashed. Her life, limited than before. Her presence in the society, like that of a ghost. Always receiving pitying glances from around.
And I know she tries her best. To display me otherwise. Every day. She spends every hour of her life cursing an invisible God, which gave her son this fate.
No. My situation is not so bad. And yet, maybe it is. I am still a burden to her. She still fills water bottles for me when I become ill — which is frequent. She makes sure I don’t overwork. She continuously thinks about how I might be in pain — making sure that I don’t even lift the water can to refill the filter.
And now that the pandemic is on. And people say transplant cases have a mortality rate of 25% as compared to others’ paltry two or three. She is even more ruffled. I see it on her face every day. My mother’s face — how it succumbs to despair if I even mention that I have a sore throat or I sneezed once.
Her emotions hang on a thread. She can start crying anytime — while pretending to be strong before me. I know she has got blood sugar problems only because of my illness.
Days are repeating. I am going through a period of dialysis again during this pandemic – exactly after five years. And nothing in between has happened. Except for a few spruce moments of relief. And it does not feel so different — this pandemic. For mothers of the terminally ill, every day is a pandemic day.
Nachi Keta is a neurodiverse writer from New Delhi whose work focuses on mental health, oppression and the absurd in social and personal.