Addendum: Nala-e-bebak

In Urdu, there exists a phrase—nala-e-bebak: an audacious sorrow. 

2007: When my grandmother died, she turned into a parrot. An obscure ritual was performed to determine what type of body she would be reborn in after departing from this one. An earthen pot was filled with river mud and sand, lidded by a muslin cloth and left to sit untouched for a couple of days. When it was uncovered, a rotund priest peered at it carefully and declared that the footprints were of a parrot. No one questioned his expertise in ornithology. She was now a free bird, quite literally. 

2020: The week it was confirmed that I have an autoimmune disorder that is slowly encroaching on my body, overtaking its ability to decide its own movement, most of the world was pushed toward a complete physical lockdown as well. 

One day, the skies over my building were suddenly filled by a pandemonium of parrots who started visiting our small balcony garden on a daily basis. The only sound of excitation in an otherwise terrified neighbourhood. 

A parrot in Hindi-Urdu is called tota. It closely resembles another Hindi-Urdu word:toota, which means broken. When I was six or so, my grandmother found an injured parrot half-drowned in her open water tank. She nursed him back to health. He followed her around the house asking, Are you okay, Kanti? Are you okay, Kanti?

Technically, he was the only person in that household who ever asked her how she was doing.

I learned English by rote. Parroting, as it is called. English is not my first language. English was planted into my linguistic field through an obsessive memorization of pronunciations before I could fathom the meanings of the words I was learning to pronounce. It was never impressed upon me that I needed to learn the language for myself—for my own joy, pleasure, or curiosity. It was more important that I didn’t embarrass myself in front of others by uttering the wrong thing at the wrong time. Recently, I found myself in an awful pain relapse, unable to stand still in one of Heathrow’s serpentine queues for standard airport security checks. I mentally ran my apology through several verbal algorithms to elicit the least discomfort in the recipient staffer. I just wanted to check if there was a possibility of my inspection being sped up due to my “condition.” It is remarkable that even when I mentally say it to myself, I have air quotes around that word and attempt to euphemize. Not illness. Condition. The state of my being. 

I rehearsed the apology repeatedly as the line slithered forth at the pace of a wounded snake. I never got to use the apology though. I ended up getting pulled over for an oversight in forgetting to remove a stray liquid conditioner in my carry-on. I was admonished for it. A grown woman of 38 was quickly transformed into an eight-year-old in her English class who was repeatedly told that she had erred knowingly. The contents of my bag scattered over the cold gray steel of the table just like my school bag emptied of its colorful notebooks. A public spectacle to teach me a lesson. My undergarments and shoes up for public display along with my sanitary napkins as if a makeshift display of shoddy conceptual art. My body was fragmenting with a neuropathic seizure.

Spinal pain was spreading its arson across the length of my upper body. The shame combined with the pain slowly was turning into the classic freeze response I discuss so often with my own therapy clients. I could feel my legs starting to wobble and my speech falter. The fear of uncontrollable numbness turned into a type of temporary paralysis. It left me fumbling for accurate responses to their questions. Next to me, a white French woman was held back for a similar offense. She instantly held up her hands in a dismissive gesture and said: “No English! No English!” 

“No big deal,” she muttered in meager English and waved her hand as a sign of her controlling the situation, not vice versa. 

My liquid container was confiscated;hers was left next to her open but largely undisturbed suitcase. She slid it back in when the guard looked away. My small bag was dumped onto another table, its innards gutted like intestines after a vicious knife fight. I quickly collected them and limped my way to the nearest chair. The pain in my spine spread through the rest of my body, spanning the twig of every nerve like a vengeful wildfire. 

Three decades ago, my grandmother tried to smuggle two guavas across homeland security into the US during her first visit to her eldest son, my uncle. These were fruit of a tree she’d planted with him during his boyhood. Of the five mango trees surrounding the old house, she patiently waited for this one to bear fruit. And then, it was seated on top of the heap like a rarefied gemstone. So, when he first invited her to Shelby, Ohio, for a visit, she decided to bring some of the home she desperately wanted him to miss along with her. A home carried inside a fruit. A fruit that itself is not native to India was introduced to Indian soil by the Portuguese in the seventeenth century. A transplant. Like the son. She packed two in her carry-on. Somehow managed to make it past Indian security in Delhi but was caught in Chicago. 

Ma’am you should have made a declaration. We can’t let you transfer agricultural produce without a declaration.

She didn’t speak much English. She thought it ludicrous that you needed to fill out a form. A fruit is not a bomb. My grandfather intervened and opted for a pacifist surrender. When she later called my mother from my uncle’s house, she said it was confusing to her how the two guavas were placed in some sort of a holding zone along with a couple of kids who looked like “us” (brown), whose parents were pleading with authorities for reconsideration after being declared that they were without the precise paperwork for bringing those children to the US. She was baffled by these rules which could be applied to children and guavas alike. 

She lived in the basement redecorated for her arrival. The house resembled a dollhouse wrapped in plastic. She would suffocate inside its pristine beauty. She fake giggled. There were no windows that opened outwards, no skyline, no view of the garden. It is like being buried comfortably without being dead. She wanted to make baingan-bharta but was cautioned against the foul odor it might emit, offending the next-door inhabitants. The nice people of that suburban cul-de-sac would not appreciate too many foreign smells. She went for a walk and ended up crossing the road at the wrong time. The driver was less than kind and she never went for a walk by herself after that. The knot in her nerves got tighter.

The son was expecting his third child and wanted his mother to be a caretaker of the household as they readied for the delivery date. The cold played havoc with her limbs. The doctor-son pointed out to the “fit” elderly white woman next door and launched into an invective about the characteristic laziness of older Indian women like her. She tried to prove him wrong by cooking and cleaning endlessly. Her ankles were swollen to the size of temple bells. She wanted to venture out and explore. The son laughed it off—I am a busy doctor, I don’t have that kind of time. Why don’t you stay home and rest your body? This pain you keep talking about might diminish. Despite veiled attempts, the son made it clear that she was there to perform care. Nothing more, nothing less. 

Etymology for pain digs its roots in the Old English term for “penalty.” I also think of the word “pine” when my own body meanders through pain. This chronic pain leaves me in a state of pining; pining to return to numbness. Numbness—a soundless floating above the waters. Some kind of impermanence, some kind of insolvability. 

As a baby, I held my breath in my sleep and someone had to watch over me the whole time I was snoozing. Quite the challenge for my single mother who was exhausted from her two teaching jobs. So my grandmother took over that observance of vigilance. I slept with my head tucked in her stomach like it was a pillow. To date, I sleep with a pillow over my face. I pine for a separation from the exteriority of the world in such a way that I can float over it without a visible tether. Pining for some kind of tender detachment. It has always amused me that tenderness is also a perfectly acceptable placeholder for pain as per the English thesaurus. Pain: a tender pining of.

My grandmother was semi-literate but self-taught. Her inability to pronounce certain English vowel sounds meant she would say “pain” as “pen.” In English, it can mean both—to create, to cage. In her day-to-day life, whenever she spoke about the mystery pains sabotaging her spine and her joints, she was usually ordered to either push it down or it was laughed off as a creative excuse against housework. Either way, she was informed that it was a figment of her imagination. A construction subtracted from materiality. She was born and raised in a village in India’s most impoverished state. The poorest among the poor. She came from an oppressed caste of landless laborers.

In her ancestral hamlet of East Champaran, during the Raj era, local farmers were forced to grow indigo (neel), a commercial crop that reaped benefits for the British colonizers. Cultivators and laborers were forbidden from growing food crops in favor of indigo which turned the soil infertile. Her grandfather’s family were periodically left hungry and desolate. The land died in pieces. The people became landless. I touch this word slowly. Without land. How do you stand on this earth without land? She was married off at thirteen and had kids by the time she turned sixteen. My grandfather, her husband, was a socialist, a selective freedom fighter in that he believed the nation should be independent but his own wife was still chattel to him. At least for the first few decades of that marriage. 

She raised five kids, two cows, a few goats, and some chickens. She set up a kitchen garden. She had a cowshed next to a coop which she diligently cleaned the first thing in the morning. She wanted to be rooted like the banyan outside her house. She managed the pen with a level of professional excellence because it was her pride. When my grandmother’s knees buckled under pain that remained unnamed for the length of her life, she’d try to enunciate “pen”the ache that was caging and creating her world simultaneously. Pain. Pen. Pain. Painted. Pen. Pent up. 

The first thing taken away from her once her body’s endurance diminished was the prized pen and the cowshed. Next, the kitchen garden was culled. Then the banyan was shorn of its locks and limbs. Once she was found by a neighbor partially paralyzed, face down in a heap of cow dung. This was embarrassment enough to sell off the cows and dictate a safe circumference for her body. 

Often her pain was dismissed on account of her “stocky” build. A laborer’s daughter was built like a laborer: built to endure, to persevere, to be resilient. She bore children. Earned her keep. The first time I came across the word “resilient,” my language schema correlated it to silence. I automatically assumed it was a form of silence; a type of soft muzzling. The way cows in India sometimes have a rope wrapped around their mouths while being moved from one place to another so they don’t eat trash from the mountains of garbage sitting by the roadside. 

A litany of silences, perhaps. Qualified male physicians would laugh at her expression of pain. She was incompetent in how she chose to detail it. Too theatrical, too rife with histrionics. She compared it to the heat of a clay oven aiming to swallow the house that contained it. They called her whimsical, almost cartoonish. She used metaphors they could mock easily. Much later, I came to realize that when women of color speak loudly about their pain, they are called hysterical. If they speak softly about their pain, they are ignored. Her stock could stand seven days in hail and come out smiling with their backs shaped into question marks by the heft of a good harvest, she claimed with pride and then smiled along with the doctors who nodded in agreement. 

It was assumed that her body was naturally designed to bear pain. To bear it without letting it interrupt her labor. It was coded into her name. 

In India, when someone asks you your name, they are usually not asking your name. As an experiment, hand them your first name, omit your last name. The question is repeated. Your name is inconsequential. What they want to determine with clarity is your caste. They want to do this early on in order to decide what boundaries must be erected between them and you if you come from a caste lower than theirs. Your name locks you in a rote of identity you can’t shrug off. Caste underlines every experiential transaction. Caste decides if you can keep a mustache, ride a horse, or touch a holy book. Caste also, largely, decides the validity and reliability of your pain. 

My caste awareness fully detonated when I went to a boarding school and a period of intense bullying commenced. The charge was led by a girl about two to three years older than me who couldn’t stomach my “weird” name (courtesy of a Roma father and an Indian mother). I was told by my parents that my name(s) came from folklore. As a 10- or 11-year-old introverted child, this was a matter of pride for me until I attended that school where my name was pinned and cut open as if it was a lab animal undergoing vivisection. Those meticulous attempts at finding more about me would inadvertently lead to waves of humiliating ostracism. 

Don’t share evening snacks with her. Don’t partner with her in chemistry lab. Ask her to bathe the last. Ridicule the shape of her nose. Ask her if she has lice in her hair. Ask her why she is always snotty. Ask her how to spell sinusitis. Ask her why her father doesn’t come to see her. 

A running joke at my boarding school was to never allot me the top bunk in the dormitory. There was a really good chance that I’d fracture an arm or a leg mostly because it was very likely I’d fall off while waking up. I wasn’t a sleepwalker. It was just that ever since I went there, I always woke up with this startled urgency which translated to jumping out of the bed in a very literal sense. I’d kick like a neurotic colt stumbling out of bed as if running away from or toward something unnameable. 

In the beginning of 2020, I got out of bed with my characteristic frenzy and immediately landed face-first on the floor like an upturned clothes basket. I couldn’t feel any sensation below my waist. The numbness lasted several minutes. There were other unwanted encores of this incident. A few weeks later, I was slowly initiated into the awareness that I possibly had an autoimmune disorder. Till date, the true nature of my condition is at best acknowledged as a medical mystery riddled with ambiguity. Every specialist has their own theory about what I go through. All of it is devoid of any feasible panacea. My consulting specialist often tap-dances around the reduction in voluntary bodily movement if things get more complicated.

Psychogenic pain is a nebulous aberration as a clinical label. It is physical or bodily pain that is supposed to have originated due to psychological factors.  Several mainstream practitioners I have encountered in my personal quest for answers have largely dismissed it as an exaggerated quotient produced by a mind performing random long-divisions on its sensitivity triggers. In this realm, certain conditions like “fibromyalgia” are so contentious that even a fairly detailed science writer like neurology professor Robert Sapolsky refuses to touch it without multiple disclaimers. When he does, he keeps the observations brief and flatlined. That said, Sapolsky has written a book about stress called Why Zebras Don’t Get Ulcers

In one of the chapters exploring the relationship between stress and pain, he remarks on the distinction between two states of psychogenic pain experiences—analgesia and hyperalgesia. Both of these responses to pain seem to be rooted in emotional reactivity displayed as psychosomatic experientiality. Stress-induced analgesia is an acute state of briefly mentally blocking excruciating pain because the focus on survival outpaces the pain (.g, a deer nearly shredded by a cheetah manages to escape at the last moment and then runs as fast as it can despite the shock because its body wants to escape). On the other hand, stress-based hyperalgesia is an increased sensitivity to pain triggers leading to an intense response to supposedly moderate stressors (.g., baulking at the sight of a needle). Certain researchers believe that this has little to do with actual pain receptors and/or the spinal cord. It is more a matter of how pain is interpreted and what sort of reactivity it causes in the recipient. If pain is a foreign language which needs to be interpreted, when and how do we learn to read its alphabet?  

Dr. John. Sarno coined the term “Tension Myositis Syndrome” a.k.a TMS for a type of psychogenic associated with musculoskeletal and nerve-related spasms and triggers. Sarno’s conceptualization of TMS connected it to emotional repression in patients whom he believed to be dealing with some deep-rooted psychological turbulence which displayed itself as chronic pain, particularly the type that affected their back. Most critics of Sarno’s classification label it as simplistic and far too crude— too unreliable to be trusted for an actual diagnosis. Sarno himself encouraged patients to first see a traditional doctor in the event of experiencing chronic pain so other possibilities like tumors, internal injuries, fractures, infections, and/or the presence of other contagions could be eliminated. 

It has always struck me as curious that quite a large segment of modern-day Western medicine doesn’t simply disagree with different non-Western approaches to viewing or framing illness as an experience, it often labels such approaches as useless and unscientific. This is most obvious when we consider the articulation and experience of pain associated with invisible disabilities. How the “pain body” comes to be is often distrusted if it doesn’t fit neatly into an explanation provided by a purely biomedical model.. In some cases, it actively works toward uprooting any possibly discursive attempts by broad-stroking everything within the brackets of disagreement as quackery. Between the brackets a gray fog limns the horizon. Sometimes as I scroll through the marketplaces of Instagram’s attention economy, I see umpteen “wellness” accounts amass tremendous followership for their “alternative healing” methods. The distance between grift and healing is somehow determined by your social location. 

My grandmother did not get pain medication prescribed to her till much later in her life. She was later diagnosed with diabetes. The same “robust” body that was supposed to be immune to pain before was now an easy medical target for her new disorder. Her robustness was referred to as girth now. The fault line was always internal.  Body or brain. Or both. For years I was told I had a high IQ because my brain was “special” but when my abusive environment left me incapable of fending for myself, the narrative shifted to my brain being neurochemically imbalanced, causing these vantablack depressive spirals. 

No one asked why my depressive lows coincided with crushing spinal pain. In the years that followed, the shape of my depression wasn’t a spiral; it was a long  and lonely corridor, a lifeless ongoingness. A spiral reminds me of a staircase you can ascend or descend. Mine was a poorly lit passage you were not allowed to escape, filled with doors to rooms that stacked sharp, broken memories. No rising or falling. Just a deep infinity of being locked in a sealed maze.

A recent paper by Şerife Tekin, a professor of philosophy and a researcher in the field of medical humanities, analyzes the question that has haunted me for decades:how do we clearly parse the conflict between the narrative of self and the narrative of illness experienced by the self? Tekin writes that there are several ways in which “the mental disorder experience and diagnosis feed into a person’s autobiographical and social narratives.” What if you have never had the freedom to express your autobiographical narrative? 

On so many summer days I spent in her house, my grandmother would be up at the crack of dawn readying spice mixes, drying root vegetables along with gooseberries and raw mango slices while polishing heavy barnis, a type of ceramic jar used in pickle-making. Blistering Indian summers notwithstanding, she’d devote several hours to the elaborate undertaking. Sometimes, I’d follow her trail up the stairs to the terrace and from behind a curtain, I’d watch her wipe her tears as she laid out the fruit of her labor. Once I witnessed her trying to get up from the ground unsuccessfully for a good ten minutes. She was frozen to the spot. I rushed to offer a helping hand but my seven-year-old child’s body didn’t have enough strength to help her rise. Seeing my face fall at the disappointment of not being able to help, she pulled me down and smiled, pretending she was willingly in that position. We sat there like that for a good half hour before we could rise again. 

In late 2007, when my grandmother breathed her last, I was surrounded by people shouting instructions for how they wanted my pomfret grilled at the Indian version of a clambake. We were surrounded by at least two-hundred other seafood aficionados. I was dragged to that seafood festival by a concerned friend who was worried about the intensity of my depressive shutdowns after a very violating encounter on a date. It was only much later that I learned to recognize the event actually was an attempt at a date rape. At that point, I had started to collapse in migraine blackouts. My body had started to display early signs of a neurological skew. 

I would overwork myself to the point of fading into a lower-body paralysis. I stayed in this stupefied state for hours without anyone’s awareness. I was too afraid to burden my mother with the confusion and distress of these psychosomatic insults. My father, from whom I was estranged all of my adult life, had passed away a month prior to it all by what seemed, from all accounts, a suicide. There was only so much grief that we could surmount at this point. As is the case for most women of color, I too hierarchized an index of what and who needed me by placing myself last. 

My friend and I nudged, shouldered, pushed across a sea of people making our way to the different food stalls, sampling starters and packing up mains, drifting from grills to woks to steamers. Then a phone call came from my mother that my grandfather would call me in a few minutes because my grandmother wished to speak to me. 

Her voice sounded frail. Ruptured. Disembodied. I had always known her as a woman of largesse—loud laughter, big plates, lavish sarees, moon-sized roses, the creamiest almond milkshakes, her house always open to perfect strangers. On the phone that night, she sounded small. Reduced, like a tasteless cup of herbal tea she hated consuming when she visited the doctor-son in America. She had finally been made gaunt: her excess stripped off of her. And yet, contrary to popular theories, she was in more pain than ever before. 

You can’t shun experience. You can’t suture the ways in which it rips you apart. Like an animal who hides in a ditch till the fractured bone heals, my grandmother and I were/are given to waiting. 

Resilience. I is silence. 

I watched the news spill over with images of migrant workers during the pandemic lockdowns in India. Holding up their children as they tried to latch onto any moving vehicle that would take them home. That desperation is violence. The language in the media was fraught with such compulsive hatred of poverty and illness of the poor. There was abject dehumanization through statements about nabbing fleeing workers.” This reckless belief that certain people are property. Their bodies are machinery. Their breath is fuel. People not very different from what was once thought of the “stock” from which my grandmother’s came. 

A teenage girl named Jyoti Kumari from a village in Bihar’s Darbhanga district, not so far from where my grandmother spent her youth, spent the last of her food money—approximately twenty dollars—to buy a bicycle in order to rescue her father stuck in another state. She covered the distance of seven-hundred miles in a week. Lauded as a hero by all, she seemed unaffected by these gratuitous odes to her “strength.” 

They call us lazy, no? If I fall sick they will just say I am pretending. That I don’t want to work.

My grandmother knew it well. This notorious definition of illness as a philosopher’s stone that turned ache into virtue. Somatization, within the diagnostic criteria of psychiatry, refers to the experience of psychological distress and unease as physical signs of illness. I think of my grandmother’s stern spine, her refusal to sit down in hospital waiting rooms, her pacing shadow cast on a paint-torn brick wall carrying the weight of all the generations previous to her. The weight of displacement. The weight of slurs and segregation. The weight of safety through invisibility, the weight of raising a reed-thin, vehemently curious chatterbox in the shape of a daughter and then a granddaughter who would inherit her pain.

In her diaries, Anaïs Nin confesses: “I was always ashamed to take. So I gave. It was not a virtue. It was a disguise.”

When you are born in the margins, you are led to believe that the only way to be seen is through disguises. If I was hurt as a child, I would bring home wounded animals to heal. If I was pulverized by merciless depressive phases, I would volunteer at more community events than I could count on both hands. If my partner was abusive, I would take on more survivors of domestic abuse as my clients. My giving was an arrow drawn outward from the center of my being: the place I was most gutted. 

A part of my illness is nerve damage or neuropathy that combines with osteal or bone-based pain. My bones are more disobedient wherever they cusp into a joint. I have been unable to grip certain objects completely and end up dropping things once in a while. A massive embarrassment. The way my grandmother felt so ashamed dropping an expensive casserole at her doctor-son’s party that she didn’t eat dinner that night. I dropped a plate and my sister noticed. She asked me and I rubbished her concern. She held forth a glass and said, “Hold this.” I tried and for a minute it was fine. Then, boom. She asked me why hadn’t I mentioned this. I said I was afraid. 

To admit that I was unable to hold things or hold on to things. To admit that something I have always been chastised about by my family, my coworkers, ex-lovers, teachers, and even healers is now physically manifested.

Scherezade drops things whenever she feels like. Scherezade is bright but undisciplined. Scherezade will release her grip when it suits her. Scherezade doesn’t like closeness. 

The problem with pain is that it asks for care, but when it originates in a body with a history of neglect, it is also ashamed of admitting that it needs that care. It is harder when you sit in a margin within a margin like the illegible calculations solving a difficult mathematical equation. Catalysts and catastrophes are knotted together. 

My sister insists on being my “vessel-holder.” My grandmother had no vessel-holders. She was the vessel-holder, and when she was filled to the brim and couldn’t hold anymore, she broke open. 

Nus in Urdu means nerve. Nosh in Urdu means food. 

I try to hold a cup of warm tea despite my hands shaking from the impact, remembering what Lucie Brock-Broido wrote:

“And loss. Keep me

Tethered here, breathtakingly awkward and alive.”

On a wire stretched between two buildings, a pair of parrots loudly celebrate the outfit changes of a setting sun.

Photo by Julio Gutierrez on Unsplash