Cycle 2, Day 3.
I have become fastidious about updating my food log, for no other reason than that it gives me some form of structure to my life. The little grids in the excel sheet give me an illusion of form, of organisation, as my body churns and rages with the medication coursing through my veins.
Today has been difficult. The exhaustion has been mind numbing, a fog that I struggle to walk through, that forces me to take deep breaths, to allow my breaths to connect to the limp mind to the rest of the body so that I can put one foot in front of another, form words through my bulbous tongue, function.
My husband is kind, as he has been kind throughout this entire ordeal, taking on a bigger share of the work that comes with living in a home, of having a family, walking the dog in the morning, preparing breakfast. I crawl out of bed, take an impossibly long time to do my morning things, stumble out into the kitchen to help with whatever I can, boiling water, washing the dishes in the sink.
On days like this, there is no start, and there is no end, only a continuum of existence.
And yet, time passes. Time passes, and the sky changes colour, the sun rises slowly and sets, and the night comes, and the day ends. In this way, I get through another day.
I have lost almost all of the hair on my head.
The bald patches and the whiteness of my skull take me by surprise, often I forget that I physically look so different, that I never thought I could live through looking so different.
The first time I saw my hair come apart in my hands, I cried, big wails, gut wrenching sobs. I am not sure now, if I was crying for the loss of my hair, or for another reminder of an irreversible loss of my past life, because there is no going back now, no going back to the person I was before I had this disease. Not to say that this disease has power, that it has completely hollowed me out from within (even though I feel that on many days) but because there are things I cannot accept in this new life anymore, in this After Life, not a life after death, but a life after disease.
These are the intangibles, the words that are difficult to say. There are more “Nos” in this new language I have begun to learn, more ways in which I stand taller, wear my skin easier. There are clearer ideas about values and beliefs that I spent my 20s constructing, and now, in my 30s, cementing. There is a family here, but within the family too, there are whirls of relationships, some that curl tighter than others, some that feel more comfortable, some that are knottier, some that are clearly not ones I want to further engage in for the rest of my life, however that looks like.
The shape of my marriage has changed too, the way metal changes in the high heat of fire. It is no longer driven by the possibilities of different futures, though there are still whiffs of it. It is firmly anchored in the realities of today, and with that, comes a certain weight, a certain soberness to love. The love pulses strongly, the way my husband’s heart beats when he sleeps deeply at night. I hold that sound close to me, pray for his good health, give thanks wherever I can.
I do not know what the future holds for me.
It does not matter.
I continue to write, feelings and words pouring out of my fingertips, drenching the page with thoughts that repeat unto themselves, ad nauseam.
I rant and rave at friends, family. Sometimes, I cannot muster the energy for anything, so I sit and watch the rain hit my windowpanes, smell the rain in the air, and close my eyes. The grey of the clouds is too bright for my eyes, you see.
I read about radical new ways of thinking, spurred by S’s suggestion to dare to dream differently about my future life. You haven’t seen this before, S, reminds me. But that doesn’t mean it doesn’t exist.
I am thankful for friends who have sat and walked and cried and held me through the years. They understand things that I sometimes lack the words to articulate.
I read about rest, and what it means for the body. The rejuvenation of being, doing nothing. I try my best to practice it, feel my skin itching in protest, my mind diving in ten different directions. I take deep breaths; I lie on the floor by the pool in my apartment complex and let the light dance beneath my eyelids. My scalp is sore, the ground is hard, but instinctively, my body knows to connect with its life force, the Gaya. My breaths deepen naturally. I lose myself in what the universe has to offer.
I tire of people asking after me, though I understand that it means well. Sometimes, I don’t speak because I tire of meaningless words.
I laugh at the silence from people who make promises they cannot keep. There is no judgement because we are human, I have done the same in my past life, but now, I know better. I do not pretend to offer what I cannot give truly. I wish others would do the same.
I learn how to use my silence as a tool of navigation, as a way of protecting my energy when I am depleted. I curl under the sheets, tired but peaceful.
I am reminded over and over again, about the universality of this human experience – love, pain, frustration, ecstasy – and of the deep isolation that illness brings, the cocooning, the trimming of fat that happens.
J reminds me not to get too cold, to learn how to keep cultivating my empathy. It is easy to dismiss other people’s pain when you have experienced this depth, he tells me. Keep bringing yourself back to this plane, it is not their fault.
It is not their fault, I mutter to myself. It is not their fault.
My husband is cooking dinner for the both of us. The clouds are grey. The dog is terrified of the lightning that occasionally flashes across the sky.
The smell of homemade fish curry wafts through the house. This house, that is my home. My home, that houses my love.
There is a soft throbbing in my lower back, but I am hungry and there is food, and so I continue to embrace the duality of this moment. Of every moment.
I give thanks. I cry.
I walk to the dining table to sit with my heart.
Over the years, Arathi Devandran has written for e-zines and publications on a range of issues, serving as a youth columnist, general observer of the human condition, and dissector of the specific experiences of being a South Asian woman in a patriarchal and parochial world. More recently, she has become interested in exploring themes of inter-generational familial relations and navigating the complexities of self-growth through personal essays and autofiction. Arathi is currently working on her full-length manuscript. Her work can be found here.
Disclaimer: All opinions and views here are my own.
Leave a Reply