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A feminist guide to illness

Aditi Rao | Updated on January 09, 2018 Published on August 04, 2017
In waiting: One of the first things that feminism taught me is that the “go far, go it alone, no matter what it takes” attitude is deeply patriarchal.

In waiting: One of the first things that feminism taught me is that the “go far, go it alone, no matter what it takes” attitude is deeply patriarchal.   -  Shutterstock

Years of chronic illness and pain reveal that interdependence doesn’t come at the cost of independence, and bravery can flourish within communities of care

One of my mother’s favourite stories about my childhood is the memory of her six-year-old daughter walking into the first of many operation theatres. “So strong,” she has said more than once, “like a little soldier.” After that first surgery (of 25, and counting), my doctor gave me a “certificate” with a bandaged teddy bear and the words “this is to certify that Aditi Rao, aged 6, showed great bravery in my surgery”. For the next three years, I updated the age in that certificate with each birthday, too young to know that certificates are supposed to be dated.

Not unrelated to these proclamations of bravery and strength, I think, was my great pride whenever the family’s amateur palmists pointed out how far apart my “heart” and “head” lines were, indicating, apparently, that I possessed a rare and fierce independence. I loved that word, independence, and even as a young girl, I believed it was something to aspire to. My mother, a single parent, made sure to raise a daughter capable of looking after herself, and I spent the better part of my teens and 20s proving my independence, both to myself and to a world that did not always seem to believe.

In the process, I pushed my body far more than was wise or necessary. In school, I often gave exams in great pain or with a bandage on one eye. Once, when my right arm bled for six months but I wasn’t assigned a scribe due to inadequate paperwork, I wrote exams with my left hand. During college, I went to a remote village to mix concrete and build rainwater harvesting tanks within months of undergoing transplants. In my first job, I didn’t ask colleagues to step in for me in the middle of a workshop even though I could tell that I had broken stitches inside my eye. I taught myself to type blind when my eyesight became especially poor. And through it all, I got used to people telling me how brave I was, how independent, and, at some point, I came to rely on that validation.

And then I encountered feminism.

***

Let me rephrase that. I had always liked the idea of feminism, but growing up, I had not understood it. I had thought being feminist simply meant being strong and independent, needing no one to take care of me — something that was complicated for me by the reality of chronic illness and regular surgery, but that I did hold on to as an aspiration. It was only once I began exploring feminism in its nuance and depth that I realised that this “go far, go it alone, no matter what it takes” attitude is deeply patriarchal.

In college I was introduced to feminist ethics, particularly to debates around an ethic of care, which took the traditionally feminised and oft-dismissed role of caregiver and brought it into the more traditionally masculine domain of ethics. I loved the possibility of care being an ethical imperative, mostly because it forced me to rethink my dismissal of qualities that I and many women I knew were so well trained in. This discussion became my first entry point into valuing parts of myself that were, in fact, traditionally feminine. Suddenly, feminism became instead the possibility of imagining the world afresh, calling hierarchies of all sorts into question, including the ones I had internalised so deeply.

Over a decade later, a close friend would introduce me to queer theory similarly, expanding it from a simplistic identification of queerness with sexual identity, and transforming it into a way of reimagining our world, challenging traditional definitions of family and commitment, moving beyond the polarity of heterosexual marriage on one hand and “growing old alone” on the other. As I moved from my 20s into my 30s, these two sets of conversations — one on feminist lenses on the world and the other on queer lenses — pushed me to look differently at my own life and choices. The ideal of independence, and the belief that strength means going it alone, never needing anyone, came under scrutiny.

***

Meanwhile, my body was on its own journey, unaware and mostly uncaring of the ways in which my heart and mind were changing. I continued to have an average of one surgery per year, and I continued being in varying degrees of pain most of the time. I learned quickly that my body’s rhythm was not conducive to full-time jobs. Gradually, I transitioned into a freelance life, one that allowed me to sustain myself financially while respecting my body’s unique rhythms. Still, even with the incredible economic privilege of being able to take time off from work every time I need surgery or am otherwise incapacitated for long stretches, there remained the reality of intense chronic pain, the frustration of constantly having to rework personal and professional plans depending on my body’s whims, and often a deep exhaustion that blurs the line between physical and emotional.

In this blurring, I soon discovered that chronic illness is also a social and emotional reality. I have now come to joke that my body came with an inbuilt friend filter, an annual social circle reboot, if you will. Over the years, I have lost five or six of my closest friends during periods of prolonged illness: as I either underwent surgery or otherwise collapsed for a few weeks, I discovered that some friends would become overwhelmed by my fragility and disappear on me. I do not begrudge these friends their disappearance. At the same time, I have learned to make room for my own grief when that happens; it is hard enough to lose a close friend in a regular month, but when you are already in extreme physical pain, feeling fragile and grasping for lifelines, it is nothing short of devastating.

This year, I set myself a new goal: I was to take a step back and look at each of my relationships more honestly, ask myself who was up for the work of care and support, and focus on building a support network of mutual care that went beyond traditional understandings of family, romantic partners, or even the vague intimacy of affection alone. In short, I was to take all my dreams of feminist interdependences and the queer imaginings of new types of support communities, and I was to begin to build this in my own life.

Perhaps it is unsurprising that the people around me who have proven most able to do the work of consistent care and kindness are mostly women, not because I think they are inherently better at this task, but perhaps because they have been trained in caregiving and paying attention to others’ needs (incidentally, all of the close friends I have lost to periods of prolonged illness have been men). When I had a surgery alone in a foreign country at the age of 19, a woman friend waited outside the operation theatre, knowing that this made an emotional difference even though I was under general anaesthesia, and I found myself struggling to later explain to several male friends why this mattered even though their rational “but you would never have known the difference if she had left” arguments were all true.

***

In the process, I remembered for the first time that “friend filters” are a two-way thing: they hold some people out, but they also let others in. This year, as I challenged myself to let people know when I was in more pain than usual, even began writing publicly about my illness and isolation, new communities of care formed around me. I allowed myself to be nourished by the friend who remembered to send a supportive text message even when her father-in-law was in the ICU, the friend who found time for breakfast before office when I needed cheering up, the one who could steal an afternoon away from a PhD dissertation due in three weeks when I could not leave home for the work date we had originally planned. When the Delhi heat was making my illness worse, a friend drove me up to the mountains, cleaned the apartment, helped me stock up on groceries for the week ahead, and then drove all the way back down to Delhi, nine hours each way.

The most interesting part is that these were not the people I would have named in my innermost circle of friendship, not the people I would have counted on to be there until they were. I looked closely at this circle of people. My people. I made sure to stay equally present for them as they struggled through marriages, PhDs, job applications, heartbreaks, and sick pets. At one time, this would have felt like an artificial way to approach human relationships, but over time, it has come to feel like the most genuine of connections that are backed up by a concrete investment of energy and affection, what feminism taught me to call emotional labour.

None of this contradicts my early cherishing of independence. I still go into surgery-prep mode with the precision of a well-crafted to-do list, papering windows to block light, baking breads and stocking the freezer with sandwich fillings because I only eat cold food after surgery, delegating work so I can disappear for a fortnight without inconveniencing anyone, downloading audio books to entertain myself when the pain overwhelms the sleep medication, and generally appearing totally in charge. But I have learned, along the way, how to also lower my guard and admit vulnerability.

In the process, I have learned to let go of my desperate need not to be seen as weak, delicate, or needy — those bits of traditional femininity that I had grown up despising until feminism told me I had no reason to. Over time, I have learned to occasionally cancel a meeting when I am too sick to be present. I have made room for self-care and allowed myself to be angry when a close friend insinuates that I don’t really ‘work’. And while I would still rather be thought of as calloused than dainty, I have learned to stop pushing my body unreasonably in my desire to not be seen as “girly”. These decisions might appear commonsensical to those who did not grow up ill, but to me each initially felt like a terrifying step backward, an acknowledgement that my body could define my abilities.

And yet, breaking out of the childish need to go it alone has brought with it a deep sense of liberation. I can take more risks, knowing that I have stronger support systems. I am unafraid when my family worries about my unmarried, unpartnered self dealing with a future full of post-op convalescences because I know at least 12 people I can call upon for hugs, conversations, ice cream, caregiving, or just their presence at the hospital. Above all, I am braver in my networks of feminist interdependence than my six-year-old self would ever have believed.

Aditi Rao is a writer and educator who lives between Delhi and Shimla

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Published on August 04, 2017
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