The soul has a timeline all its own
By Chitra Gopalakrishnan
On a brisk Tuesday afternoon, on November 13, 2015, on an uncommonly smog-less and blindingly bright day for New Delhi’s moody weather this time of the year, I sit with two other journalists, Riya Mathur and Nitin Khanna across the table of an elite food court in New Delhi with an air of fretful preoccupation.
While we keep up the ambient noise in this area with our animated talk of terrorism and the clatter of our cutlery, the base hum comes from the diners all around us.
It is the sharp ding of the elevator ding twenty yards down the dining hall that breaks me out of the cocoon of white noise.
Gone is the whir of many frequencies of equal intensities. Instead, I hear the harsh clacking of her pointed heels on the marble floor. The dimples of her puckered air kisses. The painful twisting out of the cork of a wine bottle. The wheeze of the vacuum in the long-necked bottle as the unsealed cold air inside meets the dry heat outside. The fizz of the bubbly as it reaches its crescendo. And its merry tinkle down a glass.
Within earshot is also the heightened sounds of my body’s own unsteady rhythm. Audible to me is the rattling of my limbs in my left leg that gets more absolute, more certain. The jangle of its nerves and the shivering of a zillion muscles I never knew I possessed. Amidst the uproar, I sense my convulsing muscles settle down in stiff, silent and sullen knots thigh down.
My brain’s premonitory signal sent down my spine comes alive right at this moment. But to my dopamine-starved body, the warning to be on guard against danger is too late. My fears have already dipped to the level of the primal when I find I cannot move at all and the air swooshes out of my lungs.
The trail of events is not new, it has happened several times before, but its intensity has not been this fearsome, this long or this public. I tell myself that I should have heeded more to these telltale signs. After all, problems left unattended do turn up as crises.
Just how long the thrall of my fatigued neurons flailing without direction stretched I cannot say. All I know is when I come to the world around me, my face stiffens and my pupils dilate. This as I see the dismayed faces of Riya and Nitin.
At this moment, I prefer my unfocussed state over having to grapple with their awkward uncertainty, their floundering on how to soothe my loss of adult freedoms, my public wretchedness and my swerve from the normal. Pity, sadness, compassion are not emotions I want. As much as I don’t want Parkinson’s. Or attention. As a journalist, it is second nature to me to remain in the background.
I hear Riya’s voice vibrate half an inch away from my heart. “Nitin, support her up from her shoulders.” “No,” I whisper in windy belligerence from the corner of my mouth. “I am not ready.” As my limbs are no longer taking orders from my mind, I don’t know if Nitin’s hauling me up this way is something I can handle. Nitin totters around helplessly around my clotted presence. I can’t seem to say more, my tongue seems to slip away and not help me form words.
I sense the other diners looking at me. Especially those hovering at the entrance to be seated. And I feel the eyes of the woman in heels on me. It occurs to me at this moment, perhaps irrelevantly, that I may never wear heels in my life or walk with elastic ease. And that I must wear looser trousers for henceforth.
The diners studied silence screams my fragility out loud. The crunch of their paper napkins deafens me, jags my edges. I want to rupture their reserve that seems to not respect my boundaries or my secret.
“Move back and forth,” orders Riya, “let your muscles regain their elasticity. I have seen it helps my aunt.” I do that, painfully aware of a hundred eyes scanning my infirmity, of my foolish rocking and of my contracting conditions in my thirties meant for ageing aunts.
Over time, I am soothed by the meditative quality of my push and pull movements. The storm within ebbs into nothingness and my brittle body relaxes into itself, falling back into its old patterns. I am able to stand up, walk slowly and smooth over the roughness of my experience. My lips form words and even curve in a smile. On this day, I see my falling apart as a stimulus, one that evokes a sort of kinetic strength in me, making me determined to climb over my fate.
The feeling does not last. I am told my condition has no miraculous cures. At least for now.
Dr Amish Puri, a neurologist I consult the very next day after my public episode, who I know in my gut I will see regularly for years to come, says I will have “to live life-long with it and sort out my loss of movement, muscle control and balance through medication, exercise and patience to self as the affliction will perhaps run sluggishly through its five-stage process. Or just a few stages. It could be genetic but again maybe not.”
To my question of why me and why so young, he says, “scientists do not as yet conclusively know why nerve cells in an area of the brain that controls movement become impaired in some people and why it impacts one so young.”
“The loss of norepinephrine explains some of the non-movement features of Parkinson's, such as fatigue, irregular blood pressure, decreased movement of food through the digestive tract and the sudden drop in blood pressure when a person stands up from a sitting or lying-down position. Be prepared to lose your exceptional sense of smell and taste but as you are young, merely in the thirties, you will find your fighting mechanisms are strong to tackle the early onset of this,” he reassures.
Taciturn, in a white shirt with a clean-shaven face, wearing heavy glasses and no smile, his unsentimental words help me face up to what I see to my life’s toughest battle so far.
As does my movement disorder specialist’s clinical actions as he mobilises my joints using electro-physical modalities that include heat, cold, electricity and sound waves. This to stem the ravage of neuronal atrophy and help me right now with my festinating gait as I take small steps in an attempt to keep the centre of gravity in between my feet while my trunk leans forward involuntarily.
As I take on my physical treatment with intensity in the next two years, a braided worry overawes me. The issue of balancing my marriage.
I reach out to my best friend, Sheela, for soothing. In her grey-green sari, with her soft curves billowing around her, she is a lullaby in the wind. Trying to coordinate the movements of my mouth, tongue, lips and vocal cords in my angst, my words tumble over each other. I flub my lines as I attempt to tell her, “I am terrified of losing physical intimacy with Pratik, the extraordinary silk sheets and petal appeal we hold for each other, to textural memories. As my sense of touch wanes, thoughts of his possible straying intrude into my thoughts often, particularly when I have my periods that shuffles my gait further and heightens my emotions. Particularly rage, in a ferocious, not-so-fun way.”
My words still come out garbled when I say, “I dread to think of our future when my nerve fibre connections become harder to fire up and as my networks of motor and sensing neurons continue to atrophy. The many other knock-on negative effects that are both physical and emotional are too horrible to even think of.”
Sheela strokes my hair somewhat easing the fearfulness that that settled inside of me.
The decision to live childfree seems the best choice we have made at this point. I have often told my friends engulfed by the baby fever that I “have never felt the pull of motherhood and the lure of non-obligation and freedom from child-care responsibilities are strong impulses within.”
But now when my body feels infecund, I rely on my mother to unlock me from hesitancy and self-doubt about my decision. I wail to her, “Will Pratik have to accept the drudgery of parenting me, taking on other things that go along, like the loss of my income over time, and lead an altogether less satisfying life?”
“As a woman in India, I fear you have accustomed yourself to falling into the trap of seeing women as caregivers, not the persons who need care and you are not wrong in your decision to remain childless. If you don’t have the urge, simply accept that you don’t,” she shushes me gently.
Seeing me in a state of flustered-ness causes a visceral reaction in Pratik. He is aware that one day my world and its certainties stand still, the very next day it sways and its sureties elude me and on yet another day I straddle both worlds, not knowing the familiar from the unfamiliar. He wants to fix the problem. Both of us know he can’t.
I notice he worries when I do not emerge from the bathroom for a considerable period of time, knowing it takes me a while to sit and hoist myself up again, especially on occasions when I am anxious. I know how he gently requests women to help me when we go out to dinner or to see a film. Never having relied on anyone for anything, close scrutiny of this kind, which to me seems like the worst kind of invasiveness into my life, triggers surliness.
“It will take a lot of talking, prayer, education and trial and error for us to come to a compatible balance,” I tell him. “And to begin with, please be patient when I refuse your help. I will learn to be as generous asking for and accepting it as you are in giving it.”
On my not-so-good days when I am neurasthenic, exhausted in the body and the mind, afraid, feeling very, very alone, and when my heart feels to be not so much in my chest as in my hands, a slew of questions run through my mind in slow motion, answers to which I know my doctors, my spouse and friends will come up empty-handed.
In the pages of my journal that I use to vent things that I cannot tell anyone else, dated April 5, 2018, I ask myself, “Will I be able to crossover the banality of my daily strains? Over my regular private and public breakdowns? Over my feeling of a subdued heartache all the time? Over my strenuous “why me?” disheartenment? Over my slowing down career, of a determined mind and an undetermined body? Over my paranoid imaginings? Over my inability to help the older women in the family, my mom and mother in law, for instance, navigate their old age? Over fears of my own petulant, ageing griefs that will catch up?”
The family insists on a counsellor sensing I am hitting walls of resistance. They are as consumed in the chase for my relief as I am. My mother-in-law fixes an appointment with one who has helped her friend. I sit on her decades-old brown couch, notice its fading patches. My legs are scrunched awkwardly and my toes try to keep themselves lodged within my open sandals. I find it difficult to sit back comfortably on sofas that you sink into. It is not so much the sitting on such cushy sofas that is the problem as the getting up is. I prefer high-backed or curved-back armchairs and love chairs with support for the arms. But there are no chairs in her room, curved, high-backed or otherwise unless you count the one she is sitting on.
With hair like silver yarn, straight and silky, and deep laugh lines, she is a forceful presence and her eyes radiate kindness. Yet even as I relax and open up to her, the mismatch between her, the intervention and me does not quite dissolve.
“It is just a physical disability so learn the art of acceptance, co-dependency and inter-dependency, make your inner being so strong that it is not greatly affected by what lies outside it. It will not help you to go into hiding or denial,” is her message.
“I have come away riled up, with an impression of not being heard, of being needlessly maudlin. And with a sinking awareness that women of my generation have neither the malleability nor the willingness to adapt to circumstances as the women of the generations gone by,” I tear up to Sheela on an airless, sticky August afternoon. She offers her arms and iced lemonade as comfort.
With the inconsistency of my disorder, never quite knowing what each day will be like and when the symptoms will “go off”, another worry is beginning is beat all others down. I am beginning to see that a packed, full-time career, the focus of my life so far, is to be off-limits soon. Tactful ambiguity about my condition has not been much of an option in the last two years. My condition is there for all to see.
To a longtime work colleague Raina Rathod, in a cheery, red top and red-rimmed glasses, I lay out the vacillations of my body. “I take almost an hour after I wake up to be a person. I need to form myself again by drinking glasses of warm water and tea. The tremors have moved to my hands as well and there are days when I find it impossible to key in words on my computer as my fingers curl. And when I eat, the distance between my spoon and mouth seems excessive. I have a phobia about a couple of them bending themselves permanently into trigger fingers. My sense of smell and sound which were phenomenal have dulled now and my sleep patterns are disturbed. I feel as if I am living in someone else’s body, someone else’s life.”
In a dispassionate, hardboiled, straight-talking approach, yet one with infectious warmth, she says, “I think it would be simpler for you to set up your career in freelance writing, starting 2020, by telecommuting, writing from home and working flexible hours. The side-hustle may not be fun, lucrative or meaningful in the beginning but I know it is certainly a way to grow, build a presence and cover your expenses better.”
Her steely clarity of observation helps me firm up my unformed thoughts. I need to make it in this less respected freelance fringe.
In mid-October, I seek out a guru for order within.
Mine arrives with eyes the colour of wet earth, long, wavy hair that whips around her like waves and a delicate voice like music under a summer breeze that makes me want to listen to her as we sit in the garden in the early-morning quiet.
“When you start to feel your sorrow get stale and as dreary as your days, you will know the time has come to take on your flesh as it is and find new centres to your shifting sense of self. You will need to adjust the light and darkness, the brightness and contrast, of your new normal in a particular way. This to raise a pang of hunger and thirst for the life that palpitates rather than fall into selfish complaining or into the trap of constantly clearing up your emotional debris.”
I let my ears be still for a moment to absorb what she is saying before I tune into her words once again. “You will need to throw out the clocks and find the timelines of the soul. And you will have to tell yourself that if every limit is an end, it also a beginning. I know at this point you feel this will entail a lot of effort, and that there will be unbearable restlessness and perturbation in doing this, in getting used to the unacquainted. I won’t lie. Your rough ride will be all this and more. But let’s go with routine and regular as being dull,” she finishes in her beguiling, well-modulated voice.
Taking a leaf out of my guru’s and Rita’s page, I am going to seek a part more suited to my soul’s complexion, pivot to find things my body and soul can do, rather than focus on what it cannot. It will make bearing what is amiss and irregular easier. And who knows I might see wild success.
My diary on November 30, 2019, reads…Day one: highlight the unique shape of your eyes and cover your lips in dusky pink. Day two: chase happiness with a buoyant smile, goofy humour and card-playing, taking your time to shuffle them. Day three: resume yoga. Day four: learn gardening, the art you have detested so far. Day five: touch pain points for relief and dial down the excited states of the nervous system. Day six: bring a steadiness to your faltering, uneven steps, not in a staid way but with a kind of tantalizing confidence that dancers possess. Day seven: put yourself through the paces of voice-to-text Google assistant to file your future stories.
I have covered activities for the first week of December 2019. Yet I don’t ever intend for my daily schedule to be anywhere close to tick-tock time-efficiency. I aim, in fact, to let time slip the bonds of its ordinary drill to remind myself that life must be bigger than Parkinson’s.
A little optimism in dealing with life by recasting my story, creating my own meaning and tranquillity and thinking up of new ways to leave behind my mark, I think are pleasant, personal aspirations for 2020.