On 25th November 2016, when I heard that the Cuban revolutionary and national leader Fidel Castro had died, I rushed to my ailing mother’s bedside with the news. In August 1968, an intrepid young woman of 28, my mother Mythily Sivaraman, a socialist and anti-imperialist, had made a clandestine visit to Cuba, from the US where she was then living and working. In the years that followed, she wrote frequently of the spirit of the Cuban revolution and its determination to endure in the face of the behemoth that opposed it. When I conveyed the news of Castro’s passing to my mother, I did it because I could not contain myself. I did not expect that it would make a difference to her. By then, she was in an advanced stage of Alzheimer’s Dementia and had lost memory, speech and mobility. She recognised neither her husband nor her daughter. And yet, when she heard that Castro was no more, her eyes shut tight, filled with tears. She turned her head away and refused to look at me.
That my mother reacted as she did should not have surprised me. It spoke to the way she had lived her politics. A trade unionist, feminist and communist, my mother’s affective universe, constructed through a lifetime of principled political action, extended well beyond the confines of family, kith and kin. For over a decade, my father and I were caregivers of a woman who cared a great deal about the world. Today, this panel allows me to reflect on caring in the light of larger debates about how we, as humans, may create cultures of “conviviality” where neighbours, strangers, neighbourhoods and communities live together, while “engaging with, confronting and embracing differences” (Adloff, 2019). How may we retain our distinctive singularity and strive for recognition, without slaughtering each other? A palpable concern that runs through the Convivialist Manifestos is the vexed question of how to foster and build on our mutual interdependence founded on a full recognition of each person’s humanity and dignity (Convivialist International, 2020).
The context of care-giving, which binds vulnerable persons and others (individuals or institutions) together, fraught with unequal dynamics between the giver and the receiver (of care), may provide a useful vantage point to examine this. How may the dignity and humanity of those debilitated by incapacitating illnesses (physical or psychosocial) be foregrounded in the social relationships that surround care-giving? How does caring for the world or caring for a loved one transform us and what questions does it lead us to ask of our institutions and ourselves?
A good place to begin would be to understand what “caring” meant to my mother. Building rich relationships with a multitude of people across castes and classes, she had forged an intensely political ethic of care. For my mother, being political meant never looking away from human suffering and seeking always to heed it. Reflecting on the subjectivities that animate resistant political action in the contemporary world, the philosophers Michael Hardt and Antonio Negri (2004) argue that the modern conception of love limits it almost exclusively to the bourgeois couple and the claustrophobic nuclear family. Against this confinement of love as a strictly private affair, they posit an unrestrained and generous conception of love that is not a “love of the same” or “love of those like yourself”. In doing this, Hardt and Negri allude to the transformative potential of an inclusive, democratic form of “love as politics” and its radical possibilities in serving as the basis for our cherished political projects and the construction of a new society. “Without this love, we are nothing”, they write (ibid: 352).
In retrospect, I can see that it was a form of “love as politics” that informed my mother’s political life and commitments. It enabled her also to re-work, in part, domestic life and the dynamics of her household. Our house was always open to my mother’s friends and associates, men and women, party comrades and others. As a young child, I was quite accustomed to our visitors showing up late at night and staying over to talk to my mother. Holding forth with conviction, my mother was the center of lively discussions and arguments among small groups of young people who debated politics and the public interest. Women fleeing violent and abusive husbands knocked on our door at night sometimes, accompanied by their mothers. In the slum adjacent to our neighbourhood, many knew of my mother as a Communist leader, who could be approached for help at short notice, such as when a woman was illegally detained overnight at a police station. I was told that Nagammal, from a peasant household in Villupuram district, would show up early mornings, carrying her yellow cloth bag, in order to discuss with my mother how to bring to book the policemen and their accomplices who had illegally detained and brutally tortured her in police custody. While my mother’s political activism was anchored within the mass organisations that she was part of, being a communist and a feminist was, above all else, an ethical way of being for her.
My mother’s intensity of being that struck almost anyone who met her manifested in ways that harmed her too. Her bouts of illnesses that I witnessed as a young girl, involving severe migraines, recurring gut infections, undiagnosed body pains and allergies, alarmed me. In her case, as I came to see much later, the boundaries that separated the self from the world were porous, with one easily bleeding into the other. I would like to quote from an essay “My mother, Comrade Mythily” that I wrote in 2015:
“Anti-depressants (medication) did help from the mid-1990s. The immediate effect was dramatic and they seemed to have bought her time. My father was outraged that my mother’s physicians had not even suggested that we get a psychological assessment done through the many years of her suffering. When he told me about this, I was shocked to hear that the mind could impact the body. The domain of the mind was not something my communist household had ever discussed. Do Marxists acknowledge that the mind may sometimes have sovereignty over the body”?
It was in 1995 that I heard of “clinical depression” for the first time. In all likelihood, this was the first time my mother had heard it too. She did not immediately seek to understand her condition better, as I recall. I suspect that she may have felt somewhat embarrassed to have an affliction of the mind, given the popular notion of psychosomatic illness as somehow less than real. But only some years later, she began to read avidly on mental illnesses and, in particular, on feminist interrogations of the discipline of psychiatry and its construction of the “unfeminine” woman as mentally ill. This was when she began to work on a book project on the life of her maternal grandmother Subbalakshmi, a woman who would not be contented with her duties as wife or mother, preferring the company of books to that of her grandchildren. Mythily’s book delved into Subbalakshmi’s life – her remoteness, her withdrawal from social life, her eccentricities that made people (around her) think of her as mad. Through the lens of Subbalakshmi’s life, Mythily asked: What is insanity? What constitutes the normal? And how are these linked to gender identity and social oppression?
Mythily addressed these troubling questions through meticulous research and with passion in her book. Nonetheless, her own (physical and mental) health continued to deteriorate. In August 2007, we consulted the National Institute of Mental Health and Neurosciences (NIMHANS) in Bangalore, after exhausting all medical options in Chennai. Her depression should not worry us, the doctors said, as much as what she had been battling unknown to us – Alzheimer’s Dementia. 67 years of age (when she was diagnosed), she had crossed the early stages already. It was not only memory but the faculties of perception, cognition, judgment, abstraction and reasoning that she would lose.
Her doctors cautioned us to not share the diagnosis with her for fear that it may worsen her depression. As it did. She was a woman who would speak ceaselessly to the concerns of the present. During this period, she told a friend that she felt low about herself as she was unable to hold a thought in her head and felt that she had little to say to anyone worth listening to. On the doctors’ advice, we concealed her diagnosis from her, even hiding the morning papers on the day The Hindu unexpectedly carried my father’s picture at a support group meeting for Alzheimer’s’ caregivers. Eventually, this appeared pointless to me. She has a right to know, I reasoned with my father. When I finally told her, Alzheimer’s was just another word that had no meaning for her. “Words are leaving me”, she said to me one day.
The year 2010 was a turning point. When my father fell ill with a high fever, I quarantined him and kept my mother away to protect her from infection. Disoriented by this, she began to ask me where the “other girl” was, the “other Kalpana” and who I was and could I please tell her who my parents were and how did I come to be in this house? Her anxious questions disappeared in a few weeks when her older sister showed her the family albums. The reprieve was temporary. Her confusion returned with renewed force some months later. This time my father bore the brunt of it. She asked where her “real husband” was and who was this stranger who resembled him was. Despite our protests, she was adamant. “No, this is a sweet man, but not my husband”. She would call a close friend of the family and beg him to find her husband and bring him home “at least once” so she could ask him why he had left. Sometimes she claimed to recall that the man she married had left forever, after announcing that he was done with her. “There are 18 men in this house who wear the same face”, she said to me one day.
When I insisted that she had a daughter and a husband/ comrade whose life revolved around her, she laughed at the absurdity of the notion. Looking for the “other man,” “the other Madras,” “the other home” or another time, she would try to leave the house by herself, even locking us in once. I said to her, “You can harass us anyway you like, but you cannot ever leave us”. Even as she lost her sense of place in the world, she was careful to never hurt us. She was affectionate and solicitous towards my father, trying to make this “kind, lost stranger” wandering about the house feel welcome, offering him food and bringing him shirts and towels from the cupboards. When she asked me if I was an “orphan child”, she did so with great concern and compassion.
In May 2011, we went back to NIMHANS, seeking to understand this baffling phase of misrecognition. Waiting to be administered the standard memory and cognitive tests in the out-patients’ room, my mother was immersed in reading a paper on the Gandhi-Ambedkar debates that she had picked up at the home of the friend we were staying within Bangalore. Her medical tests were done, she came out and dramatically informed us that “no question was asked about Gandhi or Ambedkar” after all the reading she had done! “Look at the world from her eyes,” the family counselor at NIMHANS said to my father and me. When each moment appeared discrete and unconnected to the other, how arbitrary the world must seem to her, I thought. But I was struck by my mother’s reply to a question from the specialist who examined her. When asked if she knew where she was, she said, “Yes, this is the place where you bring mostly women and tell us that we are not alright”.
When my mother’s disorientation became full-blown anxiety, we had to temporarily resort to sedative medication that calmed her, but dulled her reflexes and slowed her down considerably. It was during this phase that we took her to Thanjavur in September 2011 for a documentary film that Uma Chakravarti, the historian and scholar, was making. When we visited the martyrs’ memorial in Keezhvenmani village where my mother’s political journey had begun, Uma Chakravarti reminded her of what had happened there – the burning alive of 44 agricultural labourers, mostly women and children, by landlords and their henchmen – on December 25th, 1968. “Bastards,” my mother enunciated clearly and loudly. In Keezhvenmani, neither my mother nor her first visit less than a week after the massacre were forgotten.
I would like to reflect on how I responded to my mother’s illness through its different phases. Initially, I felt let down by her when she could no longer be a public figure, the “hero mother” I idolized. I was bewildered and saddened by her metamorphosis and therefore, perhaps, less kind than I could have been. I tried often to counsel her, rather foolishly. She must take things slow, retire from public life, read novels, listen to music, stop to smell the daisies and so on. Above all, I wanted her to stop fretting that she couldn’t read, write, speak, think or act as she used to. It meant, in effect, that I was telling her to stop caring about the world. But how could she? She did not know any other way of being in the world. I would say to her, now and again, that she must not blame herself, lose her self-worth or feel diminished since everyone had some form of illness, and hers were just like some other ones, say, BP or diabetes. But these facile analogies stopped making sense to me. For one thing, neither depression nor Alzheimer’s felt like any other medical condition that I knew of. Sometimes they were downright terrifying.
During the peak of her confusion about my father, my mother’s disorientation filled me with unease in the pit of my stomach. I experienced the familiar sensation of waking up early morning and feeling as if I were walking alone in a valley of fear. Eventually, I found the key to understanding my mother’s distress when I came upon an excellent website for Alzheimer’s caregivers and wrote to its creator, describing my mother’s quest for her “real husband”. She wrote back, mentioning the “Capgras Syndrome”. I read up everything I could find on this. In his essay, “The Unbearable Likeness of Being”, the neuro-scientist V.S. Ramachandran lucidly describes a condition wherein the illness-afflicted brain mis-recognises a familiar person, usually a close family member, for an imposter and concocts a story to account for large gaps in one’s memory. Since I understood the “science” of it now, I hoped to make my mother see the underlying cause of her (misplaced) agony. I wrote her a letter in which I explained, as simply as I could, that she had a “memory virus” that had eaten up her memories and, therefore, her brain was conjuring up a patently false story (that the man she married had gone away). No one had abandoned her, I wrote in my letter. It was her ailing brain that was deceiving her.
While I endeavoured to make my mother “see” things differently, my father accepted that her sense of the world was irrevocably altered. He patted her reassuringly, held her hand with tenderness when she asked him to trace the “other man”, and simply refused to heed my plea to tell her that he was the one she was looking for. On the other hand, I told her the story of my life, who I was, where I had studied, what I had done, hoping it would rekindle the embers of old memories. Could she not remember the brown pinafore uniform I had worn all my school-going years? My efforts accomplished nothing. I felt emptied out and drained at the end of each telling and weak all over. I was reminded of a maxim that I would use to teach the concept of “gender” to my students: “What the mind does not know, the eye cannot see”. I would argue in the classroom that the world begins to looks different when we use the lens of “gender” to view it with.
In the case of my mother, I also came to see that truth, of the absolute, merciless sort could hurt her. She would enquire about her parents. Where were they? Why had they disappeared so inexplicably? (They had both passed on by then). Fortunately, I found a paper written by a professor of religion on her experience of caring for her mother with Alzheimer’s. Gisela Webb (2001) urges that caregivers practice compassionate speech which involves, not the bland statement of objective truth (such as “your parents are dead” in this case), but the choice of the words least likely to inflict suffering or pain. As she puts it, when caring for someone with Alzheimer’s, it is an ethical mandate to use the language that bridges the distance between the self and the other. Reading this, I came to see what my father instinctively knew. I could never get my mother to conform to my reality. I must enter hers.
Even as my anxieties lessened, my mother moved to a different phase. The need to locate herself about time, space and social relationships, ferocious in its intensity while it lasted, evaporated. My mother, I said to a friend, was always one step ahead of us. She would change, even while we were struggling to keep pace with her needs and her state of mind. She kept us on our toes. In her new state of being, she was curious, alive in the moment and joyful. She still did not know us, but it mattered little. Mercifully, she no longer sought to know us in that terrible, desperate way. She took to addressing my father, in turns, as appa, thatha, comrade, even “you man”! I said to my father, “How much she loves us, not even knowing who we are”. Forgetting the customary use of everyday items such as combs, pens and toothbrushes, she was endlessly inventive in the alternative uses to which they could be put, as my father would observe with delight. She would hide our mobile phones and it became a game for us to find them.
She was keen to go out and see places, meet people. Any meeting my father attended, she would demand to know with indignation why she could not go with him. “Are girls not allowed? Only boys then!”, she would exclaim. Reading a “nature” piece in the Frontline magazine once, she found a reference to the Sambar deer. She read aloud each sentence laughing enough to bust a gut. I realized that she thought that it was the South Indian Sambar dish that was prancing about, agile and fleet-footed! Even though words were leaving her, as she had said, she deployed those that she had with creativity. In her bedroom, she had a mosquito net that was tied to the four ends of the bed with different-coloured ribbons. She first forgot the complex knotting arrangements and then the word for “that which falls over our heads like a waterfall”. Looking at the world from her eyes, I lost my fear of my mother’s “madness”. Allowing her to lead, I let myself go, so that I could be with her in that magic space, without history or memory or the urgent concerns of the present.
Rather than tell her the story of my life, I began to tell myself the story of hers. She may not know me, but I was determined to know her in ways I simply did not earlier. Pushed by the historian and writer V. Geetha, I began to gather my mother’s writing from the late 1960s, the start of her political life. At the book launch of her collection of essays in Chennai in 2013, I witnessed first-hand the tidal wave of deep affection and respect that her comrades and friends from her party and other social movements had for my mother. This was the legacy of the “love as politics” that my mother had nurtured over her lifetime. Over the decade and a half of her illness and withdrawal from public life, my father and I were conscious that we may be her primary caregivers, but we had no exclusive rights over her. We were accountable, in a sense, for her well-being to a wider public that sorely missed her and felt her absence.
Over the years, when addressing her comrades’ queries and concerns about her health, I found that I had no easy recourse to a language by which I could describe what she (or we) were going through. I was asked more than once, “Did she use up her brain? Did she think too much? Write too much? Tire out an organ that could have been used more sparingly?”. I would try to explain the death of the brain in Alzheimer’s and how it was not the usual forgetfulness associated with aging. Neither was clinical depression a phase of sadness, I would add. And further, chronic depression itself over a long period could actively harm and even shrink the brain. My mothers’ comrades struggled to make sense of her debilitating decline in a context of little or no public understanding of or communication around neurocognitive or psychosomatic conditions.
I heard anecdotal stories of older comrades like my mother, who had to retire, due to infirmities of one sort or the other, after a lifetime of public action. I met an elderly and ailing activist who chose to spend the last years of his life in the trade union’s office, preferring the care and companionship of his comrades to that of his extended family. In some cases, the collective lost access to individuals, who disappeared within the embrace of the care-giving family unit. My mother had retreated into her household which organized her care, having the resources to do so. But I knew that this would never have been her choice. She was, after all, a woman who had lived the second-wave feminist slogan that a woman’s place was in the struggle. Our home was always open to her friends and comrades who wished to see her. “You must know that she may not recognise you”, I would warn them to save them from disappointment. “Oh, Comrade Mythily will always know me!”, some would cheerfully counter.
In the later stages, when she was bedridden and mostly unresponsive, her friends from the women’s organisation that she had led would sing “movement” songs and exhort her to join them again in the world of manadu, porattam, mariyal (conference, struggle, gherao). I continued to share her pictures and images on Facebook, where many of her former co-workers and comrades could see them. When her friends asked if they could take photographs with her and share them, I agreed. Was I exposing her? Perhaps I was. But I felt that she must not hide and she must not be hidden. And her caregiving was a large part of my life, my every day. If I hid her, I would have to hide myself too. And, thus, we co-created a community that cared for Mythily, who cared so deeply about the world. This community of carers kept the vigil with us till the end. I continue to marvel at the generosity of this incandescent love. Without this love, we are nothing.
References
Adloff, Frank (2019). “Practices of conviviality and the social and political theory of convivialism“. Conviviality Dossier. Novos estud. CEBRAP 38 (1), January – April 2019, https://www.scielo.br/j/nec/a/NbV3MKBtx79NR5CKjQvxgbR/?lang=en
Convivialist International (2020). “The second convivialist manifesto: Towards a post-neoliberal world,” Civic Sociology, 16 June. Pp 1 – 24.
Hardt, Michael and Angonio Negri (2004): Multitude: War and Democracy in the Age of Empire, New York: The Penguin Press.
Ramachandran, V.S and Sandra Blakeslee (1999) Phantoms in the Brain: Probing the Mysteries of the Human Mind, Quill.
Webb, Gisela (2001) “Intimations of the Great Unlearning: Interreligious spirituality and the demise of consciousness which is Alzheimer’s”, CrossCurrents, Vol 51, No 3, Pp 324 – 336.
