Monday 30 May 2022


A photo diary of sorts for you … because Aunty Shai is rather fatigued and even the arrangement of words seems beyond me…it’s rain and sun and Sammy the cockapoo and Buddy the Akita, and six weeks (out of three months) with the little mousicles from KL. Two years of catching up with Grandma and Papa and Shai and a house in Cambridge with stairs and attics and books aplenty to get lost in. Imagination is running wild down the corridors and time is now, circular and fleeting all at once. The Jubilee weekend is almost upon us, and an Italian corgi by the name of Queen Nikie may be on the borrowing cards... I may also be travelling very soon, somewhere special. More about that anon... but first, the diary...

Au revoir May, en avant June. May the sun be merciful and the roses aplenty... and may we be well. Be well. 

Sunday 8 May 2022

BED, an essay, published by New York SLICE magazine

I can’t recall when I sent this essay to SLICE magazine in New York but it was accepted a year ago. Part of the contract forbade me from first publishing it in a book, but publication of the issue kept being postponed. In December they gave me the go ahead to publish my book, because as the pandemic raged on, this magazine among many others has been forced to shut down. I made it into the final issue (their 27th, themed ‘Levity’) by a mouse squeak. It’s a very cool, eclectic and racially diverse literary mag, so I’m in the rather splendid company of Honorée Fannone Jeffers and Zakiya Dalila Harris with one of my favourite chapters from my book. ‘The one with me in it?’ asks Eva. ‘The one with you and Ellie and Bella and Scruffs…’  Many of you have been wonderful to me and already bought and read my book ‘Lupus, You Odd Unnatural Thing’ but in case you haven’t, here is a taster 📖🛏💁🏻‍♀️


Artwork by Carolina Rodríguez Fuenmayor

Let me try telling it this way.

Draw a horizontal line. On one side write, “life,” and on the other, “death.” If you perceive life moving toward death in a chronological fashion, then you’ll probably write “life” on the left and “death” on the right. Or you’ll put “death” on the left and “life” on the right. Death as a beginning. Darkness as a beginning. Moving toward light, toward life.

Now collapse the center point of your line into a sunken bowl.

This is chronic illness. Chronic illness is the in-between place of stuck. Life shouts out to you, “Grab hold of me! Come on, I’ll pull you across with my words and these movies and this travel brochure.” Death says nothing. But life looks at you knowingly: “Is that what you want? To just give up and die? Fight! This is the good side!” Life is the place where everything happens, from the expected to the unexpected. The learning to walk, run, drive, feel, study, make money, lose property and possessions, create more of yourself, grow. Death, they tell us, is the place where it ends. All the money, the property, the human bodies you loved but cannot pull across to the other side with you.

In between, in the place of stuck, we share the human terror of a life with no possible change. So deeply uncomfortable are we with the place where nothing seems to happen that we plague each other by asking the question “What do you do?” What do you do with your life? Not, who are you in your life? Not, how do you feel in your skin? Your mind? Your heart? But, where in the cogs do you fit?

An odd character with the wolf disease is bound to feel defensive about what she does, mostly because she doesn’t.

An odd character with the wolf disease is bound to feel defensive about what she does, mostly because she doesn’t. You would think that when I am in hospital, I would be let off this hook for a bit.

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In 2017, I was hospitalized four times with persistent infections. It was a complex year to navigate. On two separate occasions, I had to have a PICC line: a slender catheter surgically inserted into my vein for me to self-administer liquid antibiotics, one end hanging outside my skin, the other end resting atop my heart. Self-administration makes me respect my nurses even more than usual; there are so many little details to concentrate on, air bubbles and contaminations to be careful of. On each occasion, I administered thirty-two infusions. Some were injected at home, some at the hospital as an inpatient. Rheumatology suspected that my long-term monoclonal antibody therapy had resulted in my body becoming more immunocompromised than ever. Immunology disagreed and pointed to my underlying hypergammaglobulinemia. Either way, the reality of such immunological machinations was a bone-deep fatigue. I needed to rest.

And yet I lost count of the number of times the medical staff teased me about sleeping. Do other patients rise and shine, stretch, and leap out of their narrow white beds to . . . do what?

“So,” asked my consultant when she visited, “what have you been up to in here? Working on anything?”

“Working on getting this fever down,” I replied. During my fourth admission of the year, I was moved from a ward on the ground floor (Gastro) up to the tenth floor (Infectious Diseases), to an enclosed room, with negative-pressure vents circulating eddies of freezing-cold mechanical air. I was on heavy antibiotics. The first night, my older brother, Rizwan, brought me blankets, a beanie hat, and gloves because I could not stop shivering.

“Every time I’ve seen you,” said a nurse the next day, “you’ve been sleeping!”

“What should I be doing?” I asked. “Inventing a new gadget?”

His comment stuck, and from then on, I fought sleep to occupy myself—painting in watercolor and pastel, writing blog posts, trying to look busy—to account for the bizarre preoccupation of society even on the most isolated infectious-diseases ward to do something do anything just do something.

So, I did do something. Only it was accidental. I pushed open the heavy door to my room, stepped out, ostensibly to discover when my next antibiotic dose was due, and had a quiet mooch down the long, unfamiliar corridor ahead of me. There were eleven beds on the ward, each locked away from the other. Toward the end of the corridor, I saw a portrait of Mary Seacole on the wall. Hello Mary! I greeted it. I had reached the fire door now, and while contemplating Mary, I leaned companionably against the door. Suddenly, a wild alarm set off, ringing around the ward. I put my hands up in crime drama fashion as two burly nurses hefted their way toward me. “Sorry!” I bleated, recognizing one of them, and slunk away from the crime scene.

“You won’t be doing that again!” he called after me.

Honestly. Can’t win. Back to bed I went.

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You are tired. “How is your mood?” the doctor will ask you.

“You mean my mental health?” you wonder.

I am tired. Fatigue is an actual symptom, but mention it to a doctor and they will tell you, “Try doing a little more every day. Try exercise. Try tai chi.”

Doing nothing in the face of a busy, restless world will never be met with anything other than baffled curiosity at best—thinly veiled contempt at worst.

The inner persona of the professional bed-resting human may confidently follow the motto of “Just Do Nothing” as opposed to “Just Do It,” but our outer persona will always be subject to scrutiny. Doing nothing in the face of a busy, restless world will never be met with anything other than baffled curiosity at best—thinly veiled contempt at worst. “Have you ever tried waking up early?” they will ask. “Exercising last thing at night, to tire you out? Baths, to make you sleepy? Yoga? Going vegan?” Battleground language begins here. Get up. Escape. Be a (wo)man.

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During my 2005 admission to the Eye Unit, while undergoing various surgical procedures like needling and the laser-burning of ciliary bodies in the hope of bringing my intraocular pressures down, a friend visited. “Have you been down to the concourse for a little shopping?” she asked. How could I blame her? I had done precisely that on the first day of my admission, whizzing about the hospital Body Shop, buying presents for the Kawanos, my younger brother Irfan’s Japanese landlord and landlady, who were visiting England for the first time.

“Try the shepherd’s pie!” my friend advised, looking at my lunch menu. I did. When my eye pressures shot up later that evening, and my ophthalmologist, Dr. Meyer, found me violently retching up that same concoction, how could I blame my friend for her cheerful suggestion?

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In my second year at university, I met a poet called Les Murray. Not the way I would later meet his contemporary, Clive James, across our portable motor pumps on the Patient Short Stay Unit, but on the page, in poetry. There were poems that could only have been created by an Australian bard writing within the Jindyworobak tradition, but there was one that spoke directly to me as though it had been written for me. One that I have carried with me all the years since. It is titled “Homage to the Launching Place,” and each line pays homage to “bed, kindest of quadrupeds.”

Every time I climb back into my bed—and it is always “back,” a return home—I feel as though I am being welcomed, the way a beloved house greeted you, greets you still.

“I loved you from the first, bed, / doorway out of this world,” writes Murray, giving me the line upon which I can hang my own love. Every time I climb back into my bed—and it is always “back,” a return home—I feel as though I am being welcomed, the way a beloved house greeted you, greets you still.

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When we were children, my mother agreed to temporarily take care of a neighbor’s golden retriever. He was a beautiful animal, fur like silk. Clear-eyed and friendly enough for a house full of children. A year later, when the vet asked Mum if she would adopt Bruno permanently, a very different dog awaited her. In the year between, Bruno had been abandoned and tormented, by children, we presumed, because he feared the young and was indifferent to the rest. Once a stunning example of his breed, he was now a very sick dog. His fur had been eaten away by mange, his eyes were weeping with conjunctivitis, his tail was almost hairless. It took every ounce of my mother’s healing prowess—turmeric-and-coconut-oil paste applied daily to cure the mange, cotton wool soaked in tea bags for his eyes, her constant presence by his side—to coax him into a semblance of the show dog he had been. He did come to enjoy all of us, particularly my father, but my mother was his true love. Certain habits continued to proclaim the fragile state of his psyche. He would habitually walk in circles around our dining table while we ate, round and round in an ever-dizzying circumference until, miles clocked up, he would settle somewhere beneath the black glass top.

There was one other place he would circle: the mattress my mother had custom-ordered for his bed. At any time of the day or night, he would click-clack toward the front door. Slightly to the left of the double doors, he would stop, step onto his fur-grubby mattress, turn and turn and turn around, massaging the fabric with his paws, readying his bed for the moment when he would collapse his body, legs first, shoulders second, heavy head upon forepaws last, and then the sigh. Always the sigh. Eyes not entirely closed. His bed faced front and center. No activity of import could take place without his notice. Even though nothing was required of him, he gave the impression of sleepy vigilance.

My bed, fortunately, does not face the comings and goings of our home life. There is nothing normal about a human taking to bed at any hour of the day. Sleeping in late into the morning is the reason I was sent to a psychiatrist. Dr. Meyer was worried that I was missing my morning dose of eye drops due to a combination of insomnia and seeming somnolence; in his concern, he ascribed my lethargy to mental illness. I had no personal stigma against a mental equivalent of the physical disease manifesting in me. After all, I had self-diagnosed depression. I just didn’t want my mental activity to be placed on weighing scales by figures of authority.

I escaped the psychiatry department, but I never fully freed myself from the guilty association between my relationship to sleep and medical noncompliance.

I escaped the psychiatry department, but I never fully freed myself from the guilty association between my relationship to sleep and medical noncompliance, even though my relationship to my bed began not with noncompliance but with the administration of high doses of intravenous and oral steroids. Prednisone would make anyone crazy, if crazy were what you were looking for. Add in daily doses of morphine, and you have Elizabeth Taylor in Cat on a Hot Tin Roof, except she’s not on the roof, she’s house-bound, hopping in and around her bed.

To this day, if the hour is late enough, I feel a twinge of something unsettling. Alarm that things are still far from normal. A quarter to six in the morning and I am still awake. Not widely so. I think I could switch the light off now. The traffic outside is a gentle hum, a soughing wind. The birds have not yet begun to sing. Quickly, before the fates decide I am lost, I pack away my wakefulness. And slide down into submission.

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There are addictions to my night life. Tidying my Pokémon, for example. Or Candy Crush. I could delete the app. I’m sure I could. But there is something about those brightly colored candies and the jolly jelly-busting fish. And the rewards of a hammer disguised as a lollipop. I play at least five games before bed; after five losses, you have to pay, so I try to stay within reason. I’m sure there is a connection between the happy candies and my decision to finally let go of the night.

I know I’m not alone in my night life. It used to be a more eccentric thing, an Artist thing—this staying-awake business. But now it’s an Everyman-with-a-Smartphone thing. The sky darkens to purple, lightens to mauve, the birds fall silent and then wake, but the world continues to glow and chatter in the palms of our hands. It never stops rewarding us with more and more of whatever we desire and much that we don’t. At night is when I go to the school of the globe. I meet my famous friends and I read the encyclopedia of Wiki wonders. I catch up on the latest articles that Twitter has been kindly accruing for me all day long. And then, since it’s morning for them anyway, I message my siblings in Singapore or India to see if anyone’s up.

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Ever since he could pronounce the word, my nephew Rafael has enjoyed saying he is “nocturnal” just like his Aunty Shai. At four, he was proud to share this quality with me. At six, his only anxiety was the distance between us. I was living alone at the time. What if I needed him? How would he get from Singapore to Cambridge in time? He especially didn’t like the spooky sounds he could hear across the miles. Owls dancing on my roof, I told him. Keeping me company. But maybe they weren’t owls. He couldn’t see them. He didn’t like not knowing. His younger sister, Bella, adopts more of a Guillermo del Toro attitude. Could they be monsters? Let’s see!

If it’s the twins I get, Ellie or Eva, we discuss mysteries like why Grandma and Papa are in bed sleeping and I am eternally awake. Why is it dark in Cambridge and morning in Bangalore? Would I like a piece of pancake mashed through the phone? Why don’t I get on a plane, since I’m up anyway, and then we can play properly? The circles beneath my eyes deepen into moody maroon bruises and I peel away before three a.m. “Let Shaista sleep now,” says a voice in the background. My siblings are the proper grownups. My position is unclear, variable. “I’ll only go to sleep if there’s a grownup in the room,” said Eva to me, negotiating, prevaricating. “What do you think I am?” I asked. Silence. But always, always, all four of them will instruct me to wake early.

Once, Eva held my face firmly between her hands, looked seriously into my eyes, and said, “In the morning, when I wake up, wake up early with me, okay? Don’t sleep.”

Once, Eva held my face firmly between her hands, looked seriously into my eyes, and said, “In the morning, when I wake up, wake up early with me, okay? Don’t sleep.” And, “I get tired waiting for you to wake up.” This said without heat or drama. All the more potent for it.

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The house is cold now, radiators temporarily in retirement. I switch on my small heater and contemplate slugging myself to the nearest kettle to boil water for a hot-water bottle or a cup of tea. I am hungry. Nighttime food is packaged food, unless dinner wasn’t completely wolfed down. Chocolates and crisps feature now. Occasionally, an experiment: Cheese and tomato ketchup. A fried egg with sesame oil over mixed vegetable rice leftovers. Kimchi, kimchi, where art thou, kimchi?

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Sometimes my first waking thought is this word: “death.” And just as quickly on its heels: “life.”

Know this about your chronic-illness friends—we are closer to death than you, in thought, but just as busy with life. And because we are alive, we never get used to our closeness to death.

Know this about your chronic-illness friends—we are closer to death than you, in thought, but just as busy with life. And because we are alive, we never get used to our closeness to death. Les Murray’s poem acknowledges the busyness of bed, how it heralds our screaming arrival, pushes us up and out on bedsprings and legs and then lays us out, cold, our first grave. “Shield that carries us to the fight / and bears us from it,” he writes.

Bed is my yew tree. The place where I heal, the place that heals me. I was born here, and perhaps I will die here, but that doesn’t scare me. There is nowhere I would rather be when something, an appointment or social engagement, gets canceled. The intense relief is a type of nirvana because the lead-up to it is arduous. The flip-flopping is not as boundless as it once was because my life and the people in it are more streamlined. I know myself more.

But there are still occasions when I force myself forward, thinking it will be all right. I’ll manage. I won’t fall apart by the side of the road. The ambulance won’t have to come for me. “I won’t die” is often the barometer for going ahead with a plan. But “I will spend the next several days or weeks surviving the decision” is also part of the barometer.

When the phone rings with a cancelation, there is something specifically personal about the moment—as though the universe really is listening to me with my tiny problems, seeking to find a solution just for me. This is not the truth of it. More than likely someone else is suffering too in that moment—the cancelation, after all, is occurring because someone is ill, or has had bad news. Sometimes you don’t know why. But the sweetness of the reprieve is unconcerned with these humanitarian details. Thank you, thank you, thank you is the sleepy sigh that emerges from every intelligent cell. Now we can get back to work—fighting ourselves and fighting inflammation as always. The business never ends on the inside. On the outside, you may see the twitch of my lips curl into satisfied happiness. The rest of me continues to lie in my bed as though nothing monumental has happened.

Only my niece Ellie sees through the stillness, into the truth. She draws a picture of me in bed and captions it “Shaista: Having the Life.”

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Calling to cancel a hospital appointment is a trickier business because NHS appointments are gold dust, and because I spend hours thinking that if I can just rest until the last moment, I’ll make it. I’m always calculating the mathematical minutes, working backward from any appointment: Minutes to get there. Minutes to get a taxi. Possibility the taxi will be stuck in traffic. Minutes to change out of pajamas. Minutes to work out what to wear, what to pack—medicines, reading material for waiting rooms. Food? Have I eaten? When all along my only desire is to be unmoving. A sea urchin upon the bed of the ocean. Coral. You wouldn’t know I was breathing unless you lay curled up beside me.

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You know those dreams where you get up, brush your teeth, eat breakfast, change, and walk out? You’re on your way, and then you wake up to discover yourself still in bed? It’s that, except it isn’t a dream. It’s my reality. A type of forced sleepwalking, where I wish I were still sleeping. Where bed is the lover I have been forced to leave because reality pulled me away, but my body yearns to return.

You can buy my book at this Amazon link :