VIEW FROM BED

A week ago was an IVIg day. For a year, protocol has required me to have a covid test on the Thursday before the Sunday infusion, but rolling out across most lands today are ‘the end of covid restrictions’. These are words that do not inspire feelings of delight and freedom in the immuno suppressed person. For us, once again, the personal negotiations, with each situation, begin. 

And yet… something has changed, I think. Some deep understanding of fatigue, of the way an invisible source can derail your forward movement, has entered human consciousness. It hasn’t affected man’s desire for war, oil and nuclear arms. But between the two, I think a dialogue has begun. Or, at least, space has been created for dialogue. That’s progress. 

IVIg this month was sandwiched between two Rituximab doses. In the interim, I walk my bundle of cuddly fur and attempt to be fully in the present moment. Aware of wisteria and magnolia at their plumpest. Aware of sunshine and friendly dog related conversations. 

Two pairs of not so tiny hands have arrived from Malaysia and Papa has company shouting and screaming and jumping all over him. Games are being invented fast and furiously and bath time is once again a special English delight…

At the hospital, in between joys of dogs and nieces, I managed to catch up with my friend Daisy, who had a little cry when we wrapped our arms and masked cheeks around each other, and then proceeded to coolly sketch this masterpiece of Zadie Smith. Next commission: Ocean Vuong.

View from the bed, the faux blue chair… cloudy with a chance of sunshine. (How about your view?)

HALLOWEEN GHOSTS CAN BE SCARY

My friend Colette and I spent a few hours earlier this month recording a conversation we had about life with auto-immunity, the complex relationship we have with language - the patient-physician dynamic as well as the social dance. I edited it, divided it into two parts, and posted it on YouTube.

Colette is truly brilliant at the jigsaw puzzle of piecing together life in broken particles - her mind sees connections and after 40 years of being in a health-wilderness herself, she is now able to offer extraordinary support to others in the wilderness. In my case, Colette offered up the term PTSD. I may never have applied that to myself but I can see now that Post Traumatic Stress is exactly what I suffer from. 

I had a difficult appointment at the hospital a few days ago. In August, while sick with a campylobacter infection that had spread into my bloodstream causing sepsis, my consultant visited. I had asked her registrar the day before about Benlysta, the first drug to ever be licensed for Lupus, and my consultant felt she needed to inform me personally that I was not sick enough to qualify for it. ‘You need raging disease to qualify’ were her words. Words familiar to me. I had heard her say them in 2008, during a hospital admission which included a painful lymph node biopsy. The drug in question then was Rituximab. I proceeded to become sick enough with the necessary raging disease in 2009 and have been on Rituximab ever since. Life opened up, I travelled, I finally did my MA and I wrote a book. I learned something of the language necessary to navigate this complex life. But I keep failing; it is never enough.

Whether I can or should still receive Rituximab is once again in question. Biologics are both expensive and in their long-term usage, an unknown. Exactly what it is doing to my immune system after eight years in subtle ways is as yet unclear. I was already in a shadowy place this year with the infections, four hospitalisations, PICC lines and now this uncertainty while my body fragments once more on old lines. Not knowing once again what the future holds means I cannot plan for a Christmas trip to see my brother in Singapore. It means battling depression and anxiety on a daily basis. It means walking inexorably towards getting worse while having to accept ‘worse’ is only so in my subjective opinion. Halloween’s ghosts come in many forms. 

WHAT HAPPENED, MISS SIMONE? MISS WINEHOUSE?

Sometimes I am compelled to watch a movie. I will make a concerted effort to trek to the arts picture house, buy a ticket and immerse. Last week, I witnessed Amy - a documentary by Asif Kapadia on the singer Amy Winehouse, whose music ought to have made her an enduring legend, but whose descent into drugs and alcohol annihilated body and soul. After an hour and a half, I wondered when the movie would end. When the credits rolled, I realised I hadn't once been moved. I walked out of the theatre and into crowds, into shops. Twice I was asked about my day and I shared my thoughts on the film. I think Amy would have hated the film. She would be humiliated by this remembrance of the very worst of her laid bare for our delectation. It was ghostly voyeurism. 

Later that night, still unable to shake the fog of depression, I began another documentary, this time on Netflix, one that has had no fanfare or billboard trumpeting. Amy has been advertised everywhere, has 97% critics rating on Rotten Tomatoes, will no doubt earn nominations and awards - this quiet little film streaming only on Netflix was about a gifted black woman. Nina Simone. Critical and public interest in the story of a black woman vs the story of a white woman in the music industry, then and now, is virtually unchanged. Evidence: the recent Taylor Swift/ Nicki Minaj twitter debacle.

Within the first five minutes of Liz Garbus' What Happened, Miss Simone I was in tears. Nina responds to the question: 'What is free to you?' 'What does freedom mean to me? I'll tell you what freedom is to me. No fear. If I could have that for half of my life. I mean, really. No fear. Like a new way of seeing.' When I was in N2 all those many months of 2009, imprisoned in my hospital cell on feeding tubes, cannulas in my jugular, I came across this quote and wrote about it on my blog. Nina's music and lyrics have formed a constant thread in my life from the first year of this disease taking hold of me, because Nina writes about freedom.

She wasn't free. She was young, gifted and black during the most violent times. She wrote about the horror of the bombing of four black children in a church in Birmingham, Alabama in Mississippi Goddam, the lynchings of black men in Strange Fruit, and had a mental breakdown eventually because how could she dissociate from feeling anger for her people, and yet making the kind of music white people would buy? Nobody loves an angry black woman even if her anger is poetic justice. Everybody loves a damaged white woman: Marilyn Monroe, Vivian Leigh, Britney Spears, Amy Winehouse. Simone was damaged too, of course. A manic depressive with a violence in her that was ultimately contained by a prescription drug that slurred her speech and chemically altered her personality. The price of fame for a dream that wasn't hers. Her dream? To be a classical pianist. First black female classical pianist. 

Meanwhile the chemo dripped into me yesterday. In the last hour, a woman on my right had a fit of bone bruising coughing. I hadn't heard anything like it in a while. So of course I turned to her. The cause of her severe lung destroying bronchial trouble? The same drug sliding into my veins. Be careful, she warned me. Stay vigilant. Pass me some of that No Fear, Nina. I need it, as I've always done. 

VANESSA AND HER SISTER (AND ME)

Yellow bunting hangs from trees, and since there is only one (stalwart) lady heading up the queue outside the Cambridge Union Chamber, my friend Sylvia, my mother and I decide to lounge in deck chairs, have tea and elderflower, and discuss literature: the perennially delightful question and answer of 'What are you reading?' and 'What did you think?' When we are satiated, we turn lazily to the lady in the queue, only to discover there is now a snaking river of women and we must forfeit our front row seats. We are here for Vanessa Bell; Vanessa first, and then her sister - today Virginia Woolf is the one in the shadows. Never far, or hardly done by, but the conversation this afternoon between the doyenne of historical fiction, Philippa Gregory, and the darling of the Bloomsbury world, Priya Parmar, intends to focus on the painter, the portrait artist, the one who held the centre so others could come apart - Vanessa Bell.

Priya used to be a blogger (although she promised me at the book signing she would restart her blog) so I already knew she had been friends with Philippa Gregory for a while - ten years I discover. Philippa (I can call them by their first names, can't I?) began by determining that the tenor of the interview would be intimate, they would talk as though they were at breakfast or tea, interrupting as friends of longstanding do, and interspersing memory and anecdote. It was utterly perfect. It doesn't get better for faithful readers than to have writerly friends, genuine friends, chat, confide, illuminate. Witness: Neil Gaiman with Terry Pratchett, Junot Diaz with Toni Morrison, Lena Dunham with Jennifer Saunders...

It began with the chicken story - they both had chickens at the first moment of email encounter - and meandered through the personal responsibilities of holding history in your hand and then braiding it with imagination into fiction. At various points, I focused on Philippa's shoes - they were deep electric blue, heeled and seemed to have a life of their own. My view was slightly squinty, between heads but I had been too shy or diffident to ask the volunteers whether I could snag the empty front row seats for the sake of my woebegone eyes. They were reserved for the hearing impaired, not the visually impaired. Maybe next time, I'll ask. I refrained from audience questions too - although I wanted to know if Priya came from the harmonious duality of an art/writing family as I do. She captures that particular tension of roles once defined in families, being rearranged. But art in any family transmogrifies its inhabitants. It is never enough to be painter or writer or poet or scientist. We must be all, if so inspired.

Today marks a week after the last Rituximab cycle. I have since seen my consultant and although she agrees the disease is active, she is hopeful the chemotherapy will help. I used to have a doctor who concluded every conversation with the words, 'Let us wait and see.' So it is with my consultant (a Virginia Woolf lookalike if ever there was one). We are waiting, and seeing. I am trying my best to brave the daily fevers with as little anxiety as possible. And only those who know, know. 

When I presented my book for Priya to sign, and mentioned I was a little in love with her blog The Plum Bean Project, she was surprised. But her sweetness radiates and she graciously accepted my fangirling homage. The moment was, unbeknownst to me, captured by the official photographer of the Cambridge Literary Festival, Chris Boland, who being a friend, sent me these pictures...

What he didn't capture was Mum, who is an avid fan of Philippa Gregory, introducing herself and fangirling in a much more sophisticated, respectable way. Author and appreciative fan shook hands, because Mum had brought none of her many Gregory books. All in all, it seems only right to start the nieces young on the wonders of historical fiction…

You can find more of Chris Boland's photography at his website Distant Cloud Photography.

HOW TO SURVIVE RITUXIMAB

1) Do nothing.

2) But when the drug, which makes your heart and mind race, wakes you up before dawn, lie there and hope for sleep again.

3) When there's absolutely no hope, totter out of bed into the kitchen, scrabble around the fridge and settle on a virtuous carrot.

4) Wash the carrot down with a few ginger biscuits, a glass of water and several white tablets. Remember you still haven't renewed your various prescriptions, promise yourself you absolutely will attend to it later and then forget all about tablets by

5) finding the most mind numbing documentary on Netflix. It's called, say, 'The Queen of Versailles' about a rather grimly mismatched couple determined to build the biggest, brashest house on American soil. You will retain nothing later except a solitary fact about the real Versailles almost bankrupting France with its gilt and glory. This from google and not the documentary.

6) No fever or tachycardia yet and you float about between bed and kitchen, eating noodles, watching rain turn to sun, and wondering why you aren't simply stepping out of your little house and walking the half hour to your nieces, one of whom has taken to saying, 'Shai! gone!' with a sad little flick of her hand.

7) At 4 in the afternoon, you have a high point of wellness. You steel yourself not to get dressed or put your contacts in, but to sit, still pyjama clad at the open window, sun blazing into your half shut eyes, drinking coffee laced with syrup and two Jaffa cakes melting as fast as you can eat them.

8) By half past five, sun turned to long shadows, you are in bed with a creeping temperature, a steady marathoning heart and a throat that burns with a thirst you cannot pacify. In the doorway, an old fashioned tape player and Catherine Alliott's rural comedy A Crowded Marriage. A fox has decapitated Cynthia. Not the heroine. The chicken...

9) You think about washing your hair.

10) You listen to the birds.

11) You write a blog post about how you survive Rituximab the wonder drug. The cancer drug. The lupus drug. The soon to be Parkinson's drug. You think about cupcakes, not the cake but the frosting. And washing your hair. And how quiet it is because the tape needs to be changed to Side 13. You take a breath, prepare to peel the blankets off your curled up legs and brace for cooler air. There will always be more tea, hot buttered toast and you will

12) begin again.

HOME AGAIN, TO THE SUN!

Yesterday I scoffed chocolate cake and watched the sun play in the fields beyond the hospital grounds. I nosily asked questions of a young woman just starting out on the same treatment... her heart was beating at 120, her bp was dropping, hot flushing - I couldn't help myself - I marched over, trailing my infusion, and said, "Don't let them increase the rate!" "But I feel so guilty," said she, "it'll take ages at a slow rate!" "Hmmf," said I. "So what? I am always the last in here, because I insist they go slow." I looked beadily at her husband. "Does she need to rush back?" "No, no, no!" he cried, hastily, warned by the martial gleam in my eyes. "She can take as long as she likes!" "So," says I. "All settled then." When the nurse bustled over to change the rate again ("Shall we increase to 400?"), my new friend said, "I'd like you to leave the rate at 300, please."
I gave her a thumbs up and shimmied back to my chair. Who knew I could be so bossy??

Home again, mes amies, to the bright, hot, divinity of a summer's day. The morning after my first infusion is always perfect. I dragged my yoga mat out into the garden and did a single Surya Namaskar - any more and I might have found myself back on the wards, but a single salutation to the sun was my gratitude.

Later on today, when my lymph nodes gnarl and gnaw, when the fevers start and my heart kicks up an unruly beat, I shall remember the deliciousness of a single moment. I don't mind the pattern of sun and shade. I hold them both in the palm of my hand.

Father, who is baking his tootsies in the sun, has just bellowed for a coke float (vanilla ice-cream scoops in a glass of coke - it's an Indian thing)...

Ah... we sure know how to live it up, here in the Shires...

p.s. have just received comments on the coke float not being an Indian thing - a universal thing, in fact. I stand, happily, corrected. 

L'ESPRIT

(Am heading into hospital again this morning for the second round of Rituximab. The sun is shining shyly, with no hint of what the day may bring. I am scoffing porridge and posting this poem, which I read aloud on radio... my fellow guest responded very hearteningly to it - by shedding tears! Thankyou for 'feeling' the poem Laurence!)

The hours are greater now,
they reach past four and five and six.
The loss is greater now
I've tasted each sweet kiss
of faith, of peace,
of truth, of bliss,
and seen through all the dreary mists
of teams of all the 'ologists.

Radio and Cardio,
Neuro and Nephro,
the Opthalmols
and the Rheumatols,
the Oncols
and the On Calls

and just for larks, the Dentists,
the Pharmacists, the Specialists,

and still I insist
upon the breaking of the dawn,
this Warrior, this poet,
this Shaista must exist.

- 2011

Self in a Telephone Box

All around the country, the legendary red telephone boxes are dwindling out of use. In my own sparky little village, we have two - one of which contains a terrifying effigy of some sort.. not quite sure who he is supposed to represent. He scares me. Someone stuffed him in years ago and although he doesn't quite fit, he looks real enough...

The other telephone booth contains me! Well, sometimes. It is a sweet library, available to all. Take a book, put a book in its place, and write a post-it on the glass wall requesting anything particular... I asked for more audio books and lo and behold there they were a week later. It is all very mysterious and exciting enough for me :)

Am pootling off into hospital this morning for my next rounds of chemotherapy infusion - so I may stop by the red box on my way to Rituximab...

Toodle-oo! Wish me luck xx

photo credit: Elenice Tamashiro

SLEEPING WITH THE ENEMY

I sleep with tablets. They surround me. I try to minimise their lurking presence (lupus makes one a master of disguises). I use colourful scarves, drapes, jewel bright cushions, Neruda, Chanel, the latest Hello! or Elle. Thầy, Sai and Dalai, the lamas illuminate my walls. Friends tell me my room exudes peace.
Tablets, you see, don't speak. They lurk.

On this day, in 1848, at the age of 30, ill health was to take Emily Brontë. Having caught a cold during the funeral of her brother, she died two months later, having refused "no poisoning doctor" near her. My father being a doctor and all, I could never consider any doctor to be 'poisonous'.... but I have had to learn to become robust enough to cross swords (terribly politely, of course) with a long line of medics. The latest subject: sleeping tablets.

Now, I understand, I truly do, the RED ALERT FLAG that the words 'sleeping tablets' arouses in the average being. Successive flashcard: ADDICTION. But according to this medic, the worst of all, are little old ladies (his words) who, mid induced-sleep, go for a jolly little wander, and slip and fall and break. "I know it hasn't happened to you," (he paused, I nearly smiled), "not yet." Not Yet?!!! I've never asked him for a sleeping tablet before. I ground my teeth. I wasn't there to beg. "Sleep deprivation," he sweetly informed me, "is not a disease."
"And you, I suppose," my smile even sweeter, "pass into oblivion the moment your head touches your pillow?" He bowed in acquiescence. "It's about choice, a lifestyle change," he waved grandly.

I am an individual, I remind him. Not a statistic. Nor a morally reprehensible citizen. I was never asked to sign a consent form when the first barrage of drugs were pumped into my body. The steroids that nearly destroyed my sight were described as 'life-saving'. The immuno suppressant that caused needless, endless bleeding, was called 'a magic bullet'.
I stand my ground, and face the doctor down. "We could argue till the cows come home!" he attempts, jovially. But a few blusters later, he pronounced me, "Fascinating!" twice, hastily wrote me a prescription, and sent me packing with the fervent prayer, "We need to find a cure for you soon!" 

Back to the needles on the ward tomorrow for more mabtherapy. And a few good nights' SLEEEEEP!!!!

And who knows, when I wake.... what magic will await? Sometimes a girl just needs to sleep. It worked for Sleeping Beauty and Snow White, don't you think? At least, in the Disney version. Grimm's fairy tales may have brushed closer to the truth. 

Tattoo

(Rituximab, Open Infusion Bay, James Ward)

The first drop

takes a long time to fall

down the endless tube

that feeds into me.

I glance sideways

at the man

in the adjacent chair

Lucky he does not

see me stare

at the Medusa

tattoed on his arm

His needle penetrates

her charms.

What would they say

if I suddenly stood

and burst into song?

Would they applaud
and encore for more?

Or bury deeper in despair?

What if the pious stood

and offered up a prayer?

It takes a long

time to heal

As long as the

slow drip
that slips down

me

to steal

my free B cells

The anatomy

of a human disease

has no real

language

Just a careful

steal

of medical

and military rhymes

While the heart's

beats

fight

for more time.

Images: fotobank.ru