April 1, 2022 Only my breath exists at 3:00 am, coming in bursts from tremored lips, sharp black edged letters trying to find their way scraping the insides of the tender pink flesh inside my mouth, no honey, but a blunt hammer yelling work work work when nothing works, the eyes closing as dawn creeps in stealing five minutes when there was only ten.
April 2, 2022 I struggle to find words, textures for the imagery of fatigue. The cool glass refreshes my tired eyes, just for moments. Wake up I yell through the deep layers of cells in the center of my body. I cannot. Weary the wet hotness of the kitchen towel rest against my eyes. His snores across from me percolate like the coffee he drinks so often. I am her rested for an eternity contained in those scant minutes.
April 3, 2022 Shadows are my timepiece, my other place where I store my self. They hold the feet that would move to the sharp syllables of sollukattu. They hold the legs and arms that would gyrate to the beat of hip hop on Folsom. They hold the fingers that would click clack on the keyboard delighting in the speed of pads against keys. They hold all that I used to be, following me in daylight separating and reminding me of the past. The press into my body at night, against my eyes and lungs, until shaky stiff fingers peel them away. I try and talk to them, these shadows, but I do not have the words yet.
April 4, 2022 Down by the athangarai where they would bathe in the cool mornings and balmy afternoons, sarees clinging to sun moist skin, the red soil pulsing with minerals like the vibration of translucent attendant antennae wings, they replenished, resurrected cell by cell, after chasing ten twelve children, brown feet dusted in dirt. the sun rays and waters of the riverbank would soak earth into them, planets rotating inside their bodily universe, brining ife glow and rest. And so too do I seek rest after rest, afternoon after morning, praying to Surya, heal me as the athangarai gave life before my life.
April 5, 2022 Today, opening my eyes as the alarm rings next to my right ear I hear the white noise of the small column fan that soothes me at from morning until night. I hear the chattering chirp of birds through double paned windows and 24.99 dollar curtains. I feel the creaking stiffness of my fingers as they grab for the 16-inch laptop, gripping tightly, consciously clenching around the textured pink case, pushing strengh into slippery pads, slippery due to the dopamine that flows away, sometimes a trickle sometimes like surge of a dam unleased or that scream loud in the night, inside my brain. I feel the plump warmth of the heating pad and the cool touch of the metal footstool that the tips of toes rest against. I feel movement, as the house awakens, confirming that it is alive, and so am I, and it feels good.
April 6, 2022 The calla lilies are blooming. I’ve killed them more than once. Rusted scythe in hand, the crunching of the stems sounded in my eyes, sharp as the teeth bite of tart peppers, as the snap of the spoon on floor, as my cracked soul, unvoiced screams in my throat, tears that fall too frequently falling then, I destroyed. And yet they bloom. On this day. The day the seed of the plant of me was born. Dark smudged lines only the Nadi can see, curled up into withered edges, bounded by twine, or a Rolodex, foretelling my fate. And just as Devavrata vowed to live with his terrible curse, so must I. Reborn again and again, choosing my own death by choosing life.
April 7, 2022 This is what it’s like, she says to herself. Taco Bell at 10 PM. Sprite, 7-Up, Soda. Not she, but her. Thought vines coil, blossoming and killing as Bhimasena wields sword delivering death, redemption, the latter, maybe. New vines entwine and surround, there is no Prince Phillip to be found. Who wields the sword? Not her, not she. But we. Moonstones skipping over creaking frogs and smooth toes, not toads, or roads but odes to toes rolled out flat and supple. Shaky the hand, wielding that spoon. Mind, where are you? Medusa on Tuesday. Thataka on Wednesday, the vines intertwine, one long dangerous intestine, until she, not her, left with figs and cherry yoghurt after midnight, thinking thinking. Steady the mind she says to her, she says to she. She says.
April 8, 2022 The stars beckoned me last night. The crisp night air as sweet as vadai made on Krishna Jayanthi, rolled back and forth in Amma’s hand, I felt the breeze move over me in whifts and gentle shadows. Yet sleep came uneasily, in smoky tendrils of a forest chimney, the humid heat clinging to my skin hugging my stiff limbs. The morning came and weighted honey coated my lashes, everything was a golden smudge. And then the sun beckoned me, bathing me with knife sharp heat, slicing into my skin. I espied the manjal covered thengai shell, a gift of the archana two days back. Little hands pressed it against me. They look little houses, she said. And so I am home.
April 9, 2022 The leaves shake in the wind saying hi to an old friend. It’s not Parkinson’s but it is.
April 10, 2022 Sunlight against rose petals against skin pressed together by five year old fingers with faded nail polish. Like a mask, she says. Yes. Who wants a headband she asks. Me. What colour she asks. Rainbow. Rejuvenation.
April 11, 2022 The need to be perfect is a strong demon. It is not one that aids in creation and health, but rather one that destroys. I'm letting go of perfect and fighting myself every step. April is the month where I would share a new image and post taken that very day and post it online, sharing my experience in the moment. I could not serve up anything old and recycled. My Paati would cook fresh daily in the 50s and 60s! How could I do less. And then I stopped, heard my Paati's voice laughing at me saying, "With four young children and no modern equipment do you think we made everything fresh daily? That I would sit on the ground grinding dosai maavu every day?" and I heard her give a hearty laugh again at my foolishness. And so I share this image. And while it was taken a couple days ago, the idea of it was only created today, so my need for perfection is slightly appeased. As someone who learned dance for a few years and continued to remain in love with it, I have always regretted not working hard enough nor being disciplined enough to perform my arangetram. In my 20s, I went back for a moment and thought, I can do this. In my 30s, I'd perform jathis in the kitchen, thinking, maybe. In my 40s, I looked to stunning and powerful female dancers my age wondering what their story was. And now, as 50 knocks on my door, I stepped out into the fresh night air and cool light of the moon on Friday, energized, feeling my body move and thought, let's give this a go and see how my arms move. I can at least attempt alapadma. And so I started with my left hand, encouraging my fingers to flow out into a lotus. My fingers did not want to listen. They curled and cramped until I gently coaxed them outward. But they were wilted. Not the lotus I imagined. Surely my right arm will work, I thought. And yes, it was easier, but much harder than I thought. I wasn't the same. The disease was progressing. Looking at my shadow, my arms and fingers clearly outlined, I saw my future. I could resist and deny or adapt and grow. I could be present, or devolve into past comparison and misery. On most days I chose the former. Some days, though, I cannot and choose the latter. A lotus does not bloom to look beautiful. It blooms because it blooms, and closes when it closes. And so my fingers and hands will move when they can. Some days I may force them to work and push them hard. Other days I may let them be as they are. On some days everything may word in order. On other days it might go all waterfall pike into hell. But today, on World Parkinson's Day, I choose reality, I choose acceptance, I choose joy. I am learning when to open and when to close.
April 12, 2022 gripping the delicate black outline of keys, fingers pressed into the keyboard the breath underneath pads of skin breathing heavily, holding, waiting and then a subtle power moved through ligaments, bone, and tendon fingers flew over a s d f, lifting words into the air, not poetry, not a love letter but a work memo, love in another way for just five minutes. just five, and then . . . nothing
April 13, 2022 fingers twist inside petals curl, darken and fall does the flower bloom
April 14, 2022 eyes stay open like frogs at the pond’s edge, waiting for the buzzing insect to land on their pink tongues, they look at and ask, how do you sleep with eyes open? I do not, I reply. I lay awake.
April 15, 2022 toes curl in as calves stretch taut, teaching in the taughtness of muscles into ligaments into bone stretching to cue into pointed toes upwards into the clouds on the ceiling.
April 16, 2022 A shadow bright shadow passes through, a phantom of past lives, when fingers would nimbly hold silver negatives, gently pushing them into archival sleeves, but now they tear, bend, twist, as the shadow weaves its escape through the lines pressed into my fingers. I hold my hands within my own hands. I press on.
April 17, 2022 Caramel cat stretched out sun rays cloaking skin like a toast chestnut, book in hand, mind in other worlds, the weekend was a friend. Cloaked in shadow and light, I wait now for lazy contentment, remembering the river at noon, the sand underneath toes like cool red silk, and the ocean breeze curling around my ears. The sun beckons as I cloak myself in shadow. Yes, I will meet you at 3:00 pm. And we will walk together. And be friends.
April 18, 2022 People say you look well, you’re doing good! Maybe you don’t have Parkinson’s because today is a good day, right? There are no good days with Parkinson’s. No day is a good day when you have an incurable, degenerative brain disease that takes away everything at whatever pace it decides. It can never be the good of the past. That is gone forever. But a good moment possible for as long as you can have it. And maybe they might lead to good days. And this moment, right now, is a bloody good moment. The mail has arrived. Par avion. A tingle shoots through my body whenever I see that. Something magical is in that package. All the fatigue has left, adrenaline pours through. I feel energized, renewed. Pajamas off, floaty top on. Shaking fingers take minutes to leave sh in earrings. I almost give up. Deep breaths. I can have this moment. Glasses on, reading light pressed to my skin, I pose. Head keeps shaking, tilting one way. I can work with this. I must. Timer at 3 seconds I click away. And I feel like old me but new me. And I love it. Not the photo I was feeling earlier. Not the words. Should I post? Does it fit? Fuck it. My thoughts. My experiences. My words. My story. My self. And I’m shaky, dyskinetic but man am I feeling good.
April 19, 2022 She’s in the hospital. Again. Nothing is working. Body as stiff as the trees that burned from the wildfires that one fall. Brain as tired as Sisyphus. The same thing over and over. It’s not working. See him. It’s not working. See her. Nothing is working. See them. Brave bold beautiful powerful her. Who will see her? No one is. No one does. But I saw her. That post. She’s suffered major loss of motor function it says. Why didn’t she call? She couldn’t. I could. Phone a friend is powerful. Our network is strong. We must be titanium spiderwebs to survive. And so she’s in the hospital again. Getting help. And I am cocooned. Wondering. Will this be me? And I watch. And I listen. And try to remember. Breathe.
April 20, 2022 Memories tear apart threads that connect myself to myself. Traditions stitch myself back into myself with threads as thin as the zari in Paati’s sari, as strong as the gold of their birth. The red earth of my motherland, cool sidewalks of my homeland weave together into my cells, and hold me.
April 21, 2022 I slept the sleep of those who know the end comes soon. Vines from the plant in the right side twisted around my body. Upon awaking, Amma’s smile and barely buttered toast and a warm shower revived the faded silk of my body. But the mirror told something different. Large with black framing, attached to the dresser, sunlight filtering nearby, it said to me such things. You’re old. Haggard as Mantara, yet without cunning or intelligence or talent. The saree is for those with skin of the morning flower, not the ancient rose. Look closely at the skin beneath your chin. Your skin is wrinkled and saggy. It hangs. It betrays you. Saggy skin, no hair, degenerative disease. Who will want you? And so I looked and looked and looked more and listened to the mirror. But I am not happy with this mirror, I thought. And so I went to the other mirror above the bathroom sink, underneath the yellowish fluorescent light. The mirror that has seen my grief, my sorrow, my silly faces. And it also spoke to me. You survive and thrive with kohl rimmed eyes that show your strength, your humour, your zest. Your skin glows with the kasturi manjal of apsara maidens. When the leaves curl and brown they still belong to the earth. When the malllipoo wilts its scent becomes sweet and luscious. When the skin wrinkles, creases and sags, tilt your chin, stretch your skin, and walk proud, your feet embedded into the earth that birthed you. Choose your lens it said. Choose your mirror. You are alive. You have survived. You will thrive. Look! And so I looked and looked and looked more. And I saw. Me.
April 22, 2022 Disabled. The word doesn’t fit. But when I tremor, when words slur like fermented molasses, when I gyrate like a demented Ferris wheel, when I’m not ADA compliant, the normal ones might think I am. Disabled is their word. Not mine. I am me. I can click that shutter, I can race up and down the street, I can twist and shout. I can. Whatever it is I can. But I must be disabled for you, for that big house to give me the rights and treatment that are humane, for those normal ones to understand with limited perception. For you I am disabled. Not for me.
April 23, 2022 Breaking News. The personal assistant for the Suprachiasmatic Nucleus, who disappeared last Sunday, has been found. When asked about their boss’s whereabouts the response given was as follows. “I can neither confirm nor deny the location of the Suprachiasmatic Nucleus. I can only say that I saw SN getting into a black Lamborghini with the Optic Chiasm and heard a mention of Bali and something about needing sleep and relaxation.” Incoming Wire: We have a report that since we shared this information five minutes ago, tickets to Bali have been sold out and a group of shaky zombies seems to be converging in major airports works wide. And now on to Saturday’s Home & Garden update. We will be talking about the latest craze in nightshade vegetables.
April 24, 2022 Breeze against window My hand claws into myself I too am a bird
April 25, 2022 after the watermelon sticks in my throat, frog to my crane, after the head bobs and weaves yet remains as tight as the pill bottle in my tired hands, after the tongue wraps around lips teeth and gums struggling to get words out, as the creamy soup of the ramen waits to splash against awkward fingers and mouth, as my torso sways in the still flatness of the cement, as 10 pm arrives and I wait for sleep, as 12 am descends and my eyes open longing for more, after dusk glides into the room I wait for night, racing thoughts hopping between synapses, unable to unplug, when night neither soothes nor inspires, yet I wait. Hoping.
April 26, 2022 I wait for you morning and night I wait for the warmth of your palm in mine I wait for the stillness of your touch I wait for your fingers to stretch, lengthen and curl firmly into mine The cool breeze carrying a bright green crispness winds around us, waiting for us (what I overheard the hand tell the other hand one morning)
April 27, 2022 sunlight flows onto my skin like water on rocks from my last walk in the dawn magnolias bloomed later that night, the jasmine vines winding around me that flowering tree, whose name I forget, walks next to me in bright footsteps I remember in faded newspaper clips the breeze between my fingers and the way my feet moved down the street in front of the house with the tomatoes the color of my third favorite lipstick I remember that it was just last year that I moved like the gale calling the moon. I remember that I can still move like the morning mist as it dews against the garden leaves my body moves like the saree flowing through Amma’s hands and I, yes, I rise up.
April 28, 2022 I licked my collarbone with my chin and tongue The short silver hairs on my scalp dancing like dandelions in the fall My arms and shoulders listened to the music of the 60s, all that twisting, but the shouting was only inside. The fight stopped for moments. The pain was ever present. I accepted it and could breathe. Nothing worked yesterday. Yet everything worked. I made it.
April 29, 2022 Last night she told me, outside in the cool air, that she had noticed my movements upon first meeting me. Is there something I should know about Sree? she asked my boss after that first meeting. Ask her, she’s pretty open about it, he said. She didn’t ask. Two days later, after a late night, of pasta, police and pole dancing, preceded by a Limoncello chaser with the potency of last year’s petrol, I told her. And last night she told me. I didn’t think to hide it, I told her. I cannot. But I did not think it was that obvious, and I hope that people may not notice. The moment I adapt, my body changes. The moment I think I have found a method to rest and calm, the body moves like a pigeon named Elaine, arms jerking, twisting, head moving right and left, chin tucked in and pushed out in warped geometrical movements. Knowing people notice, wondering what they think, if they judge, makes the pot boil anymore. The only time watching a pot will make it boil. And yet there is no other course. I must adjust and accept and accommodate as the world cannot, will not. I watched myself the next morning, today, to see how I move, if it , if I look as awkward as it feels, as I feel. And in the watching my wounds opened up more. I felt shame. Why can I not control this? What am I unable to reign in my mind. And so I watched. And in the watching, I found some acceptance. And in the watching I found some beauty. And in the watching I must be as firm as the mountains behind the home of my youth, as fluid as the leaves that fall in Autumn from the tree in the home of my memory, as gentle as the breeze that arrives during the purple dusk, until I too become part of the red earth, the same earth that my grandmother walked and that my mother ran in, barefoot and joyous, until I too fade.
April 30, 2022 As much as I vehemently and passionately want to do this all on my own, this meaning life, with Parkinson’s and without, I cannot. There are people who do it all on their own, a voice whispers. Don’t be a wimp, be strong, you can do it. And on this last day of Parkinson’s Awareness Month, I am thinking deeply. For the mountain needs the earth to support it, the flowering jasmine vine needs a trellis to tenderly cling to, the monk is only helped by community of the sangha. And so do I rely on the support, love, understanding and kindness of family and friends. My mother folding my laundry and always cooking for me when she doesn’t have to. My father waiting up for me whenever I go out late. My siblings bringing me lemonade daily or calling always calling me or texting just to say without my asking. My brother-in-law offering me a home if things get rough. My niece giving me a pillow and blanket when I’m sleepy and then cuddling with me, my cousin spreading Parkinson’s awareness by presenting a paper to her team, my cousin-brothers making the most terrible jokes about sex and Parkinson’s to make me laugh. And my friends, knowing me in my ugly and tired moments, in happy beautiful moments, loving me and finding me worthy, worthwhile and important regardless, allowing my body to move and twitch and rest without judgement or discomfort, offering to take care of me, live with me and love me bedridden or not. My online community for showing such constant support, encouragement and realistic hope and utter frankness. These are the moments that make the pain, frustration and emotional and physical upheavals bearable. This is why it’s important for me to share in ways that I never would have thought to previously. In ways that shock and surprise my friends and myself. This is not me yet it is. I am me but I am other. It is a duality. Just as I am Parkinson’s but I am not. As I become more comfortable being vulnerable as an advocate and artist I am able to connect more with people and with myself. And so the work continues. Along with the search for Godiva truffles. Because damn it, that matters.
AmmA
In March of 2017 my Amma’s mother’s health started to decline rapidly. The week after her death, her younger brother, Cheena, was diagnosed with terminal colon cancer. Within six months they were both gone and a house once filled with the noise of three television sets and many international phone calls was suddenly quiet with only the ticking second hand of the various wall clocks to fill the void. My Amma bore the brunt of taking care of both of them during this time, dealing with the after effects of both their deaths and six other family deaths, all within a thirteen month period.
This project began in a documentary photography class at SFAI with Prof. Judy Walgren in March of 2017.
Amma stands in the driveway of the home where her mother and younger brother live in San Jose.
Kalki, the weekly magazine from India that Amma's mother would read, nestles next to the notebook where her mother wrote "Shri Rama Jayam" in Samskritam daily.
Amma stands outside mid-morning and waters the rose bushes that her mother and younger brother, Cheena, planted years ago.
Amma (right) and Appa (middle) enjoy their new granddaughter in their Philadelphia home.
Cheena (left) and Amma (right) choose an urn for their mother's ashes at the Oak Hill Funeral Home & Memorial Park in San Jose.
San Jose, California, April 2017. Amma, center, wipes her eyes, as she visits her mother in a hospice home, hours before her mother would pass away.
Rose flowers, with only the stem remaining, are left on the kitchen table after one of the various religious funeral ceremonies for Amma's mother.
Amma (center) coils up the backyard hose while two Sikh men teardown the tables and tent after a post funeral luncheon honoring Amma's mother.
Amma (back center) watches while Pandit Sivasankar Hemmanur (front center) performs funeral rights for her mother.
Amma holds out her mobile phone so her younger brother Cheena, resting in bed as he deals with stage 4 cancer, can answer a phone call.
Amma (right) and her older brother Raman (left) perform a funeral rite in which their mother's soul is released to the next dimension.
Dishes remain in the kitchen sink, waiting to be washed, after one of the funeral rituals for Amma's mother.
Amma sits in the kitchen of her mother and younger brother's home looking out the window into the backyard.
A collection of items and medicine rests on the bedside table of Amma's younger brother, Cheena.
Amma enjoys playing ball with her grandson at her daughter's home in Philadelphia.
Amma naps on the family room sofa in her younger brother's home in San Jose.
The analog phone in the kitchen of Amma's younger brother's home remains silent and unused.
San Jose, California, October 2017. Amma sits with her younger brother Cheena, holding his hand, as he passes away while in hospice care.
Amma walks out of her mother and younger brother's home, heading back to her home in Philadelphia.
The sofa that Amma's mother would sit on, that Amma's younger brother would lie on, that Amma's would nap on, remains unused in the family room.