This is a continuation of my memoirs: both in words and self portraits, documenting living with an undiagnosed chronic illness for the over 10 years. You can read the previous installments here.
Sunday, Apr 5
My parents have started a new routine of having tea together downstairs in the verandah at five every evening. I don’t think they’ve ever used that part of the house before. Nor have they had so many meals together. They watch the Prince leap through the air like a gazelle in the garden that overlooks the balcony and my mother has even started to give him a biscuit, despite her still shouldering the resentment that he ate up a shawl that my father had given her as a present. She is tentative when she calls for him. Her voice is louder and more shrill as is the case when one tries to hide fear. The Prince has learned not to jump on her but one never knew. She gives him two biscuits while she sits on the rattan settee and then says, “Now go. Go.” The Prince politely removes himself to a corner where he eats his feast.
I was in terrible shape the day after the vet but what felt worse was them having to see me like this: staggering to the dining table, struggling with the coffee cup. I don’t have the heart to tell my mother I can’t lift up the cup to drink soup out of it so I force myself to, even though doing so feels like things are tearing inside me. Sometimes, if I force myself to watch the television, fighting off the reflex action of closing my eyes, I feel as though my eyes have been gouged. It used to be worse after the fall from the gondola in Venice, two years ago, but now I have little tricks on how to cope. Sometimes if I contract my shoulder muscles in a particular way, or my ankles, I can keep the eyes open. But it shouldn’t have to be this way. Normal autonomic functions shouldn’t have to be this hard.
Apr 13
The lockdown is supposed to end tomorrow. Meanwhile, I feel more and more bed bound by the day. A nice rejection email lifted my spirits today— when you’re desperate it’s always the little things that matter. A police car went by this afternoon, making a public announcement requesting everyone not to go outside unless it is an emergency. The mosque has been calling out prayers till very late in the evening. Extra prayers. These are the sounds that keep me company throughout the day.
I hear broccoli prices have gone up from 100 Rs to four hundred.
I feel sad, and angry and determined and fearful all at the same time. Is that possible? D, my physio would say that yes, if I’m feeling it then it is.
I had a strange dream about B the other night— that he was a cross dresser and we wandered around Central Park while he traipsed in green lipstick and long black hair. He said he was disgusted by men. He still felt sexually attracted to women though— we kissed although it felt much like kissing a wall.
Then last night I dreamt of D. That he was in Calcutta. I would sign him into the Saturday Club where he’d do aqua therapy with me. Showed me some cool moves. He said he could come every Monday and Tuesday. Otherwise he was too busy.
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I live with a progressive and terminal disease. I like how you try to express the feelings you’ve experienced. The pics in particular, though to be honest, I haven’t been able to read the written portions yet. I look forward to the experience