We land on an unusually warm November day in a Delhi as grimly gray as the brilliantly explosive fall we left behind in DC. This discordant, fractious, familiar place—where newspaper boys flash blood-curdling evening headlines of rape and murder at traffic intersections, where clouds lift in a sudden flash, bringing the spectacle of medieval domes turning from gold to pink in the waning sun—holds for us the promise of succor.
Only three months back, our family had moved to the U.S., thanks to my husband landing a two-year-long auditing assignment. Between decoding the shopping aisles and deciding whether to cook Indian or just thaw a pizza, I had set up a routine of sorts. The high points were exploring at leisure a new section of the art galleries at the Smithsonian and discovering amazing used bookstores. I found myself browsing public libraries worth their weight in gold, watching sunsets from the Kennedy Center’s vast terrace, and cycling or walking the neighborhood—learning to tell the reddening pin oaks and sugar maples from the yellowing poplars and birches. Most importantly, for the first time in my life I had time off from work, and I was using it to write every day.
My two kids had just begun public school in September. My father, who had always dreamt of visiting Niagara Falls, had come along with us. However, he didn’t take to America the way he’d expected to. Like the holy basil sapling he got from the ISKCON temple in Potomac, he wilted, graying around the edges. Galleries and walks tired him out. It was too cold or too windy or simply too much for him. In Bethesda’s quiet, he ached for the thrumming throngs of sunny Indian streetscapes. For him, the happiest time of the day was three o’clock—when the deserted suburban lanes filled up with chattering, excited high and middle schoolers walking, cycling and driving home. He would sit in the sunny bay window watching. When his two grandchildren came into his field of vision, his milky eyes lit up. Every afternoon, the kids would inundate him with stories of cool and liberating yet bewildering American ways. He would listen bemused to their excited plans for a road trip to Florida over winter break. Father had become weaker despite all the fresh air and quiet and good food and rest I advocated for—and none of us knew why. Maybe, I thought, all these aches and pains were a manifestation of old age’s melancholy compounded by his compromised autonomy in the suburb, where everything depended on driving a car and having a bank account.
By mid-October, father’s shakiness and body aches became alarming, and after a series of consultations with specialists, he was referred to pathology and radiology. The radiologist called my father in three times—summoning one doctor, who then called in another, and then one more as they rescanned him. The gaggle of technicians and doctors had clucked unhappily at the screen, telling us nothing, promising to send the report to the referring doctor the very next day.
A day later—after hushed mutterings over father’s blood work, sonograms, and the CT scan—the Indian American doctor in Maryland revealed the bad news. The constant fatigue, the shooting aches and pains—dogging him since his arrival in DC—had taken the rigid form of a distended spleen. Probably a blood disorder, brewing for more than six months. Could be a cancer or a pre-cancer, but they couldn’t say exactly what without a spinal biopsy and a battery of blood tests, the cost of which could easily run to twenty thousand USD. The doctor and his partner were very forthright—if you don’t have comprehensive medical coverage, they said, don’t even think of seeking treatment in the insurance-rigged American healthcare system. Run as fast as you can back to India.
With no idea of how long everything would take, I simply booked us a flight and bid my husband, kids, and books farewell, hoping the trip to Delhi would move us out of our anxiety-ridden limbo and toward some resolution. It felt strange booking a guesthouse in Delhi, the city which had been home till a few months back. But in a typical Delhi way—because we knew someone who knew someone who knew the doctor—we got a fast-track appointment with a top hematologist at the All India Institute of Medical Sciences (AIIMS), India’s premier public medical research hospital cum college.
The fourteen-hour flight from DC to Delhi was exhausting—for me, for my father. I imagined the growing spleen we saw on the CT scan only ten days back nudging at his ribs. Through the flight he looked ashen, and all I could do by way of offering comfort was stroke his cold, bent-fingered hands, his nails bloodless against my pink palms. I was certainly not prepared for the sudden surge of energy he displayed the minute we landed, waving aside the wheelchair and insisting upon shuffle-walking his way through immigration.
Now at the airport exit, my father’s face loses its tense look. He folds his right hand to touch his forehead, saying thanks to his Gods—he has faith in Delhi. His eyes twinkle as he takes in the dust- and fume-laden air. He blesses porters and attendants and chats up the driver who addresses him in chaste Hindi. His relief at not having to twist his vowels to the strange contours of American English—so unlike Indian English—is palpable. Father tells the driver that Delhi is too hot—is politics raising the temperature? Not to be outdone, the driver jokes, “Sir, what can be said about the heat or politics? One is in God’s hands, the other in the prime minister’s.” The sound of my father’s answering laugh makes my heart catch. I resolutely look at the traffic.
Outside the airport we are stuck in a traffic jam. On the streets, two rival political parties, BJP and Congress, are marking the anniversary of demonetization. The BJP government claims that the overnight decommissioning of old currency one year back had been necessary to root out corruption—and is now celebrating a day of victory. Congress, the main political opposition, dubs this claim bogus and is marking the day as a black day. The evening commuters, trapped between two sets of shouting rallyists, look on, resigned. It is the Delhi Wallah’s destiny to live with these political tantrums—if only to keep the hope alive that the pulse of democracy is beating, no matter what else ails the body politic.
The hope we need to keep alive is different. The American doctors said that my father’s bone marrow was shutting up shop, making twisted, teardrop-shaped red blood cells. The spleen had taken over the making of the blood cells—a heroic but self-limiting role, getting bigger by the day. The danger of the ballooning spleen bursting made the simplest activities—eating, bending, sleeping, turning over—potentially more life-threatening every day. We needed to begin treatment fast. At the guesthouse, once he sleeps off the jet lag, my father is gratified by a steady stream of visiting relatives and friends who touch his feet, agree with him when he criticizes the politics of the day, listen to the details of his sickness, stare at the evil scan, express dismay, and offer advice.
Our first appointment in AIIMS two days later, however, only addresses my father’s ear problem. When asked by the hematologist about the medicines he takes, father begins describing his body aches. The press of patients crowding the corridor, waiting to get in, makes the hematologist impatiently tell him to come back with a hearing aid. Father had mislaid his super-expensive earpiece a while back, probably for his own sanity. It had amplified the most innocuous sounds to horror-movie scale—the turn of a page, the swish of a curtain, the creak of a door.
“Not to worry, buy a midrange one and this won’t happen,” the doctor tells us. “It will tap the big sounds and not the small noises. Don’t go to the posh shops in South-Ex and Gurgaon. Try the company outlets.”
After much debate, we plan an expedition to the Siemens company outlet in Sadar, Asia’s biggest wholesale market, the next morning. I veto going by the metro—the crush of crowds will be too much for my father. We tell the car driver to take us to Sadar. The driver doesn’t say no but parks the car at the hem of New Delhi’s RK Ashram Marg Metro Station, beyond which the old city teems. He tells us he can take us only this far because his master, the car owner, will make him pay for every dent and scratch likely to result from a journey into the mayhem of tongas, bullock carts, cars, cows, and two- and three-wheelers that is Old Delhi. I am apprehensive, but seeing how excited my father is, I hail a rickshaw.
The suspension-less rickshaw with red rexine-covered seats and blue awning might be a time machine. It trundles through a sea of poisonous air, shouted obscenities, and blaring music, transporting us from the New Delhi of wide, tree-lined avenues, smooth roads, and big important offices to a Delhi of potholed narrow streets branching into warrens of noodling side lanes. We pass the Chitragupta sadak full of marble and wood statue makers. Past thriving astrology shops with experts in black magic promising to solve all problems related to love affairs, inter-caste marriages, and marital discord. Past shops selling sacred threads, gemstones for good luck, and aphrodisiac roots and seeds. Tucked between the personal is the political—Jaggi Jhande-Bille Wala, offering bestest prices for all kinds of party flags and badges. In the darkness of this crammed Parliament, flags emblazoned with symbols of rival political parties—broom, lotus, bicycle, elephant, hand—cozy up together. We pass wholesale dealers of incense sticks, wedding garlands, turbans, tin trunks, suitcases, satchels, sewing supplies, and shrouds. Shops dealing in made-in-China, only-for-India items sell demon masks, angry Hanumans, laughing Buddhas, faux-crystal Ganeshas, wagging puppies, yellow squeezy ducks, and golden feng-shui nodding cats for car dashboards.
I question my wisdom for venturing in this madness with father and his spleen. But I see his face alight with a childlike pleasure. Friends, relatives, myself—we all have been infantilizing him since his diagnosis, forbidding him to do this or that. The simple joy of a long rickshaw ride is the first normal thing he has done in many days.
Maybe this outing will take a toll, but for now, he is happy. His smile is a thing of grace. It makes me think how his dry lips purse in mortification every night in the guesthouse. How he angrily shoves my hand away every time I offer to rub his jerky, aching legs, insisting he is fine. Indeed, since we came to Delhi, my father’s stubborn need to deny his illness has become an unwieldy elephant in our shared room. He believes that the biopsy will prove the American doctors wrong, that all he suffers from is a special kind of flu which will be curable with injections, a tonic or two. Every night he needs to pretend to sleep when he barely can, and I need to pretend not to keep an eye on him. Only when delirious with night sweats does he allow me to dab him with a damp towel.
Now, on our rickshaw, he points out things to me. Grinning, we acknowledge the visage of Mahesh Tota, the reigning corporator, beaming at us from buildings and electricity poles, proclaiming his electoral win. Where else except Sadar would you meet a man called Parrot? We cross Gali Arakashan (Wood Sawers Lane) and Aram Bagh, Aram Nagar (Leisure Garden, Leisure Town). Long-eared goats stare back at us from stone platforms. A signboard of the curiously named Sai Baqi Billlah, a Muslim Sufi saint equally revered by Hindus, catches my eye. The famed Indian reverence of saints cutting across religious lines is alive in this bedraggled corner of the city, no matter how much the Hindu nationalists deny it. We go past Nabi Karim, Idgah Road, and the infamous Girston Baston Road, Delhi’s red-light district, which by daylight looks like any rundown shopping area. When we arrive at the mouth of the lane where the shop is located, I realize I cannot let my father walk in this shoving, heaving mass of humanity. I call the Siemens person instead.
“Okay, jee. Not to worry. If uncle cannot walk, the shop will come to him. We are here to provide service only,” a Punjabi accent reassures me.
In the last few days, I have become adept at asking for help shamelessly, without letting the possibility of refusal cow me. I am surprised again and again by the generosity of strangers. I get down from the rickshaw and ask another shop owner, from Jeet Plastics, to let my father rest. A molded plastic chair is set before a pedestal fan for him, a glass of water proffered, while I stand in the pell-mell outside to look for the hearing aid fellow. Within ten minutes, I spot him speaking into the phone, laptop tucked under his arm, a Siemens leather bag on his shoulder. “Look up, look up,” I shout into my cell phone, one arm waving like a semaphore till he spots me.
Vinod is a gangly, bearded youth, around twenty-five. He seats himself in front of my father, displays a selection of earpieces, and asks him to try one. He opens his laptop and adjusts the device frequency through his app as my father reports on the loudness or weakness of his hearing. The shopkeeper and the shop boys become a sympathetic audience. Within twenty minutes we are done at less than half the price of the high-end hearing aid we had bought earlier. To celebrate, my father gives four hundreds to the shop boy to get tea and jalebis for everyone—the fat, crisp, juicy, sweet-sour ones, fried in desi ghee from Dariba Jalebi Wala. The jalebis come, and there is an impromptu partying with friendly strangers that can only happen in this milieu. As we part, everyone wishes father good luck and gets blessed by him.
On our way back to the guesthouse, as the rickshaw winds through Paharganj, my father, the mathematician, tells me the shop boy should have returned one hundred bucks. I divert him by pointing out the names of Pahraganj hotels: All ijj well. Yes Please. Ok Madam.
“Our work was done, that’s all that matters,” I say.
He agrees, clutching his Siemens paper bag protectively. I get down to buy bananas and apples from a cart under a peepul tree. In front of me, a travel agency, Hi-Fliers, claims to make all foreign travel easy and funny.
Our rickshaw has sucked us inside a kitsch capsule. Around us, shop fronts are strung with bags, masks, junk jewelry, scarves, stoles, hippie gear, mirrored bedspreads. All at rock-bottom prices. We stop by a Chinese shoe shop that sells handmade footwear to look for sandals for my father. The fancy stuff feels uncomfortable to his swollen, anemia-ridden feet; the orthopedic footwear feels too tight. Now, in this unlikely place, we manage to find the perfect pair. Not sandals, but a reassuring, sturdy, commodious embrace that promises to hold up even his shaky, trembling feet.
All ijj well indeed.
▴ ▴ ▴
Two days later, acoustically armed, my father and I are back in the crowded corridor of the daycare ward in AIIMS for the biopsy. My father sits slumped on a bench, chin dropped, breathing through his mouth, squeezed with five others. We came early and have been waiting for two hours, and still the ward gates are shut. All around us, patients with pale, onco-cast faces sit on their haunches, lean against walls, and examine one another with frank Indian curiosity. Their relatives mill around or, like me, stand in stoic resignation. Burqas, turbans, lungis, sequined kurtas, IV drips on wheelchairs, kohl-rimmed eyes, plastic chappals, shiny sandals, beards, sindoor, bangles, shawls, and luridly colored blankets, wheeled bins full of blood-soaked bandages and broken syringes, chatter, clatter, chai in plastic cups.
The woman next to him tells a restive little girl in a bandanna, who sits on the floor, to be still. She takes a doll from her bag for the girl to play with.
“Naughty girl, you also want to get admitted in AIIMS,” the little girl scolds, plucking out the doll’s hair.
I go to the window, stab at my phone in an effort to look elsewhere. I click Evernote to read my random jottings and come at one which asserts: “I want to suck out all marrow of life. I don’t want to practice resignation and discover that I never lived life.” I try to imagine the vanity, the foolish sense of control, required to jot down such pretty-sounding stuff. My days of long walks and writing time feel a lifetime away. These days I derive comfort from resignation, patience, and acceptance.
The queue outside the kidney ward has swelled like a tumor. My father dozes, wakes up from time to time, and looks for me with an infant’s anxious gaze, wordlessly asking when he will be called. A middle-aged woman sitting next to us, her hair parted by vermillion, has come for her dialysis. She works as a caretaker of a village crèche in Gorakhpur. She listens all about my father’s enlarging spleen, and pats his gnarled hands with her small, hennaed ones, tells him not to worry. My father is maudlin and cries easily these days.
“The medicine here has effect, uncle jee. You will be cured,” she assures him.
He folds his right hand and touches it to his forehead in acknowledgement, that pious gesture again. I purse my lips. His faith in God, his piety, irks me. My brothers and I spent our growing years in the recurring nuclear fallout of our mother’s mood disorders—her alternating bouts of rage and paranoia. Gods, did they ever see us, let alone help us out? As always, father’s prayers seem to me weak and vile apologies for inaction. Now in this mysterious ailment, and its cure too, he wants to bring in God.
When my father’s name is called out for biopsy, I feel acute dread and acute relief at once. A stone fist grips my stomach. Will it hurt? How will he cope? What will the results reveal? I tell him calmly that he need not worry, I will be standing right by his side. The doctor explains to him in a soft voice that he will tap and siphon out the marrow from his spinal cord.
The young doctor is an embodiment of Arjuna, focused in a self-deprecating yet competent way on the eye of the fish. In that narrow, cramped ward, infants screech, toddlers wail, the elderly shuffle around. There is hardly any standing room. Yet there are no raised voices, no grimaces. The doctor and his team work like gymnast-choreographers without a single misstep. With quiet efficiency, the doctor inserts the corkscrew-like needle into the base of my father’s spine and aspirates the marrow. Pearly white and viscid, it climbs up the needle till it touches the inch mark on the syringe. Exactly three minutes. All secrets of the presence, cause, and extent of disease are buried in it. The young doctor keeps explaining in a soft, soothing voice what he is doing, what he will do now.
“You did very well—you are very brave and calm,” he tells my father. “Now you just have to lie down for half an hour, and then we will bandage you, and you can leave.”
He turns to me and explains how to hold the ice pack on the wound. I press the pack on father’s bare spine with one hand and hold his shivering, cold hand with my other.
When it staunches and he is bandaged, my father blesses the young doctor in a gruff and shaky voice. He believes that the biopsy will solve all his problems. But my Google-infested mind is stuffed with frightening information on leukemias, lymphomas, and myeloproliferative neoplasms, all of which could be behind his enlarged spleen. Outside, he breaks down again as he tells the women who have now become his friends—and are anxiously looking to see how he fared—that the doctor is an angel.
The biopsy reports, when they come a week later, bear bad news. Further tests for gene mutations confirm that he has a rare, incurable fibrosis of the bone marrow. His marrow has turned stringy and fibrous—literally like a gourd left out in the sun—and is now incapable of making red blood cells. When a patient is over eighty years old, bone marrow transplants are ruled out. The only solution is to contain the enlarged and hardened spleen with a new super-expensive oral cancer drug called Jakafi. In line with what the doctors in America had indicated, we did well by coming to Delhi. Jakafi costs an astronomical twelve thousand USD a month in America but is within our reach here at a mere seven hundred USD when prescribed by a specialist for a diagnosed cancer or pre-cancer. Apart from this, there are other medications to soothe the symptoms. This palliative care cannot make my father better, only stop things from getting worse. There are painkillers to dull pain, steroids to numb the urge to rake off his skin. Medications to lessen the fevers before they become deadly, to ward off infections that receive open invitations every day from his lowered red blood cell and platelet counts. They all would leave him weaker, dizzier, shakier—a shadow of himself.
There are so many self-help guides and rule books for how to be a good parent. There are none for how to be a good child. Self-righteousness is always my first response. I am always in problem-solving mode. The fact that there is no solution to his problem stumps me. Every night, I now wrestle with the devil. I want to escape the suffering of watching him suffer. All my belief in self-determination, in the twin Gods of good eating and regular exercise, have become suspect. Confronting this new helplessness is unfamiliar, unbearable. And yet I must stay next to him and watch my Gods tumble.
My father has led a model life. Always kept his side of a bargain, stayed in a marriage with my mother, a volatile, high-strung woman. Been responsible, frugal, abstemious. Stuck to yoga, good humor, and his sense of duty, believing that it would keep evil and illness out. And yet life has socked him again and again. He prostrates himself before Lord Ganesha every dawn and dusk. Now, the doctor has instructed him to stop bowing before his Gods to save his spleen. I cannot say which distress would be greater for him.
The beginning of his end is my first confrontation with my own mortal self. All my illusions of control—my scorn of my father’s Gods—permit me the fiction that death and disease are preventable and manageable, not inevitable. November changes to January as my father is kept under medical watch to see if he is responding positively to Jakafi. The drug, while softening the spleen, also causes the red blood cells and platelet counts to plummet further. He gets one transfusion to stabilize. And another fifteen days later.
In the guesthouse, to pass time on nights father cannot sleep, I sit by his bedside in the room that has become home and read the Bhagavad Gita to him. It’s a reversal of childhood days when he sat by my bed reading stories aloud. When I see our reflection in the dressing mirror, I realize how shrunken and slumped he looks. The Bhagavad Gita calls death a transformation, leading to reincarnation.
The whole karmic merry-go-round of life, death, rebirth is a way of arriving at acceptance. Yama, the God of death, riding his buffalo, slowly but surely keeps inching toward every creature born. Why fear the inevitable? Death is not a calamity but a punctuation in the grammar of afterlife, the book says.
But the rippling shock in the realization that we are all meant to suffer does not go away. My father, for all his meticulous virtues, will not be spared. We all must sicken, weaken, and disintegrate to meet the inevitable end. It cannot be prettified. It’s only when I sit next to my diminishing father and read to him that I realize how futile is this hubris—that death’s arrival will be any different for us. In the three months in Delhi, fighting dipping platelets and RBCs, dipping confidence levels, gathering excessive medical knowledge, and unmitigated despair, I learn a lot about how finite medical science is, and how infinite faith must be.
A year later, back in America, hope still ebbs and flows. My father’s body remains a fortress under siege, but the spleen has gradually softened, become smaller. Father has revised his expectations, accepted many limitations—a day when he is not racked with pain and fever is a good day. The medicine has worked on him without destroying him.
My father lumbers slowly beneath the cherry blossom canopies in Bethesda. He can barely walk till the next corner before he must sit on a bench. Torn by the wind, the blossoms rain on him, and his wrinkles stretch into a most beautiful smile. Finding acceptance for so many losses of the body has given him an unusual agility of the psyche. I still do not know the logic behind the presence and cause of hope—or its extent—in a condition like his. But my father knows in his fibrous marrow that embracing hopelessness, yet carrying on, is the secret.
I understand the thing called fortitude better.