By Saachi d'souza Aug. 01, 2019
When you live with chronic pain, the illness makes you less accessible to the world and the world less accessible to you. In the past year, the conditions of surviving my chronic pain has slowly dawned on me. One of them is not having the luxury to desire with abandon.
I’ve been having a conversation with myself on loop. It’s a difficult conversation about what my body is holding me back from. For almost a year now, I’ve been struggling with chronic body pain, and while that sounds specific, it is in fact terrifyingly ambiguous.
When you have grown up applauding the precision of medicine in fulfilling our human need to know the “why”, you also become overcome with an insatiable obsession to find closure. I’ve been to several doctors, taken multiple tests, and have also started psychiatric treatment to diagnose the causality of my constant pain. The problem with such vague pain is that it almost feels like it will forever remain unexplained. It hides behind its untranslatability. I can tell you that my shoulders hurt but I cannot perform the pain I feel inside. Living with a chronic un-diagnosis means not having the right words, not being recognised, and eventually, resulting in a complete loss of belonging in the spectrum of illness.
My chronic pain is best explained by the status of my mental health. My anxiety causes me fatigue, loss of sleep, debilitating aches, and migraines. In the last year, I have either forced myself out of toxic friendships with abusive and manipulative people or have been forced out of them to aid this very process. Even when I moved to Mumbai for college, I was recovering from bitter relationships. Soon after, I met someone who became so important to me that I let myself ignore the challenges of my own days and only focused on his struggles. I gave myself to him; my mornings, my nights, and every hour in between was spent taking care of him. As time passed, I became scared to speak, to make any move without his permission, and sometimes to even sleep. This dynamic instilled in me a paranoia that mobilised itself into every moment of my day, and every relationship I had with people.
Somewhere along, I forgot to spend time with my body; to nurture it and hold it with care. Our bodies need rest, I have learnt, after many years without it. If you, like me, are someone whose body feels like it is unable to communicate, it is advised to pick the people you choose to visit you very carefully to accommodate your body’s ability to socialise. Your vulnerability is on full display because more often than not, you are no more than just flesh: “Where does it hurt?”, “What are you eating?”, “How are you eating?”,“How many times a day do you pee?” “Are you vomiting?” “What does the vomit look like?” “Does it hurt when I touch here, how about here?” The answers to these questions ensure that your body does not have the option to remain private.
The problem with such vague pain is that it almost feels like it will forever remain unexplained. It hides behind its untranslatability.
But more importantly, illness makes you less accessible to the world and the world less accessible to you. I have spent most of the last few months in my bed. Sometimes the mood strikes and I want nothing more but to meet people, have a drink, explore the city, and return home late. But when I get out of the shower, my closet feels empty, my skin too dry or oily, my hair unmanageable, and my eyes tired. It becomes further isolating to be in a crowd fighting pangs of pain and balancing anxiety-inducing triggers and bodily dysfunction.
In the past year, the conditions of surviving my chronic pain has slowly dawned on me. One of them is not having the luxury to desire with abandon. The fundamental act of desire is an unfamiliar feeling when my body finds itself conformed to a single state – still and the stillness does not allow desire in. To be able to desire, I have felt, defines so much of the feminine experience and is also an erasure of the binaries that control our bodies. Immobility births the desire to be held, sometimes to unburden the pain by shifting the medical focus on the body to an emotional one. To rediscover the body as fragments of feeling but sometimes, to shift the mind away from the pain; to numb, distract, and detach.
For a long time I did not have access to intimacy in my life and then I did. I met someone who understood my body with its past and its present, and shared moments of lightness with me in times that were unbearable. I learnt what it meant to be held and loved with such attention and sensitivity. Intimacy is different in a space of illness. It requires strength, attachment, emotion, sensitivity and consent for everyone involved. I often feel lonely not because I am physically alone, but because I am untethered to the comfort of having someone hold my hand as I winced while extending my legs or someone pressing my feet until I fell asleep. The more my body feels pressured, the more I am inclined to rest its back on the individuality of desire.
Perhaps, sometimes we desire intimacy only when we’re too weak to hold our heads up and sometimes when we’re trembling and our bodies feel like they’re falling apart. In moments like that, we only let those who are familiar with our curves hold us. I am the latter. I weep usually when I am alone, and the only witness to my tears, sometimes, are my cats. They hear me crying and come towards me very slowly, then gradually, and eventually curl up next to me. I feel as though I am recognised and my sadness is witnessed, but I am left to be with myself and my personal space.
Sometimes, intimacy in my house is being woken up by hungry cats and sharing morning laughter with them and sometimes it is falling asleep cuddling with them.
In these moments I think, what more could I say about my relationship with them, who make for most of my home? In times of grief that creeps in through the door left ajar when my mind is spiralling down and my body feels like it is sinking, I suddenly hear soft meows that morph into clamours – a demand for food or attention and I let go of everything and keep it aside to be revisited later. I walk with them into the kitchen, serve them food, and refill their water bowls, then watch them eat with urgency, and laugh a little at how colourful this looks; a daily routine so mundane. In these moments, I feel like I rediscover intimacy.
Despite my body pain, despite its un-diagnosis, I want to wake up every morning, feed my cats, clear their litter boxes, play with them, then hold them and pet them until they purr to sleep. Sometimes, intimacy in my house is being woken up by hungry cats and sharing morning laughter with them and sometimes it is falling asleep cuddling with them. My illness might make it difficult for me to communicate both physically and emotionally, alienating me from the length and breadth of intimate experiences. But what I have found in my understanding of intimacy is its omnipresence – how it is not always sexual, how it settles in the smallest of spaces, and most importantly how it does not require communication, at least not always. It is silent and understood.
Saachi is a freelance writer and photographer who likes to think she is doing research in between, but really spends most of her time being an obsessive cat mom.