A Farewell to Chemo: With Fireworks!


First, a blockbuster blossom: last Monday I got the results of an MRI scan taken after my fourth chemo session, and it showed NO CANCER in my breast. Why hasn’t she mentioned this before, you may ask? Well, like Bob Dylan after his Nobel Prize announcement, I was speechless. Even though my surgeon had been confident my tumour would shrink rapidly under Herceptin, its disappearance, two thirds of the way through my chemo treatment, was an extraordinary result.

The news was so incredible, in fact, that I couldn’t quite believe it. Maybe, I thought, cancer sort of comes and goes during chemo . . . Certainly, as the oncologist said, it wasn’t an official all clear – to verify what is known as a ‘complete response’, leaving not a trace of disease, the tissue has to be examined in the lab, which can only be done after the surgery to remove the titanium marker in my breast and clear my lymph nodes. My joy was also tempered by a barrage of treatment updates: while I might be well ahead of the pack, the SAS marathon of orthodox cancer treatment is only just beginning. In addition to the five years of hormone blockers I was expecting, I’ll have to have radiotherapy every day for at least three weeks in January, and a Herceptin shot, delivered at home by a nurse, every three weeks for a year. That Herceptin needle is big, and it hurts!

Still, although arduous, all that is infinitely better than having cancer. I celebrated quietly with a few friends, and planned to make an announcement after my final chemo on Oct 27th. Then came a setback. I bounded into the chemo unit last Thursday only to be told that my white blood cell count was too low, and I’d have to come back in a week. This was deflating, to say the least. The delay would set back my surgery date, perhaps interfering with Christmas travel plans. And perhaps, a small part of me worried, the delay would allow the cancer to start growing again. Frustrating also was the fact that I wasn’t given much information on how to help my white blood cells rebuild. I went back into research mode, and over the week, various people sent dietary information – citrus, selenium, zinc, all good – and the NHS dietitian recommended eating a lot of protein and washing fruit and veg extra carefully. And, because introducing new bacteria into the gut isn’t necessarily a good idea when one’s ‘infection fighters’ are low, she advised against probiotic yoghurt, in favour of the pasteurised ‘non-bio’ variety. I hadn’t been aware there was a difference, and having examined labels in the Co-op am still none the wiser. Anyone interested in keeping their red blood cell count high, by the way, may be interested to learn that the tannins in green tea can rob the body of iron, so it shouldn’t be drunk for two hours before or after iron supplements or iron-rich food.

Altogether, it was a lot of strange information to absorb. I felt a little low at times, to be honest, and got inordinately angry with the acclaimed Adam Curtis documentary HyperNormalisation, which started by blaming Patti Smith for Donald Trump’s conquest of NYC, and only got more sexist, shallow and West-centric from there on in. (Syria’s Hafez Assad was quite a decent dictator until Henry Kissinger hurt his feelings, apparently.) I was too tired to post a review, but was glad to find this Theatre of Noise post, which articulates all of my criticisms, and more. Generally, I managed my fluctuating mood by reading, watching and writing more nourishing fare – more on my reading in a future post, I promise – and was especially happy to make a breakthrough in thinking about a character in Astra 4. I also rested, bought flannel pyjamas covered with foxes, birds and rabbits, was grateful for some gorgeous meals cooked by friends, listened to hypnotherapy tapes and Meredith Monk’s ancestral echoes on Composer of the Week. And before heading to the chemo unit again today I heard Jenny Murray interview Bryony Kimmings and Judith Dimant, the writer/director and producer of  A Pacifist’s Guide to the War on Cancer, a new – wait for it! – musical about cancer I’ve got tickets to see at the National Theatre in a couple of weeks. For, as Women’s Hour discussed, and I’ve reflected on before here, when confronted with the barrage of challenges that is cancer treatment, how do we move away from the martial metaphors that imply those who die of cancer have lost some great battle with themselves?

Today, for example, the chemo nurses told me that while my white blood cells had rallied, they were still considered too low to risk more drugs. Was that my fault? No: I ate well, scrubbed my veg, and the rate of recovery is something I have little to no control over – though that’s a challenge to accept too. Should I have taken the news serenely, instead of wrestling with disappointment, frustration and worry for an hour as the nurses waited for the oncologist’s verdict? Perhaps I can just reassure myself those feelings are perfectly valid and normal, and be glad I had a dear friend with me to talk with about poetry and, not warfare, but his relationship with the blood-thinner Warfarin. In this way and others, I am trying to say ‘farewell to arms’. In that classic novel I have yet to read, Hemingway wrote, ‘The world breaks everyone and afterward many are strong at the broken places.’ Stronger and more flexible, that is the way I’d like to emerge from this period of my life.

Fortunately, the oncologist said I could proceed today, prescribing a higher dose of steroids over the next ten days to help the white blood cells recover. So in this season of fizzing, bursting, banging surprises, one thing is finally certain, my chemotherapy treatment is over! Oh, and in case you’d forgotten after all this complaining – it very much looks like my tumour has vanished into the night! Huzzah!! And thank you again to everyone for your support, love and prayers. There will be a post celebrating all of you too soon, that’s is also for sure.

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Shelter from the Storm: Dylan Trumps Chemo

After the gusty gales of the past four months it was fabulous to celebrate turning a corner in my cancer treatment this Thursday night, when I read some new poems at the Red Hen/Pighog Pigbaby Rides Again poetry party, sharing a stage in the glamorous Paganini Ballroom of Brighton’s Old Ship Hotel with transatlantic barnstormers Maria Jastrzebska, Ciaran O’Driscoll, Hugh Dunkerley, Tom Sissons, Brendan Cleary, Red Hen Press editor Kate Gale and Pighog host John Davies. It being Day 8 of Chemo 5 I’d been worried I’d flag, but somehow my eyes remained open and my legs vertical til midnight – a taste of my new wild self, or perhaps I’d been turbo-charged by Bob Dylan’s surprise Nobel Prize.

As a balladeer, I take Dylan’s win as a tribute to oral literature which should not be honoured simply as the root-field of all poems and novels, but in its own right, as an living tradition. Last year’s crowning of oral historian Svetlana Alexievich, and the early laureateship of Rabindranath Tagore – best known as a poet, but also the author of over 2000 songs – demonstrate that Stockholm obviously agrees. As one of this year’s committee members said, ancient Greek poets used to sing their work – alone and accompanied by the lyre, hence of course ‘lyric poetry’. The ancient Greeks also used to recite longer works with the aid of a staff, striking the floor to the hexameter beat of their epic histories and myths. As the concept of the writer’s ‘voice’ demonstrates, all written literature is deeply historically entwined with oral expression. If Dylan’s songs, in the committee’s view, create “new poetic expressions within the great American song tradition”, they do so often by engaging with American and European lyric poetry. He named himself after Dylan Thomas, after all, and who can’t take heart from the doleful and confessional Relationships have all been bad. / Mine’ve been like Verlaine’s and Rimbaud.  But there are subtler resonances too. As I said in the intro to one of my poems, quoting the opening of ‘Tangled Up in Blue’:

Early one mornin’ the sun was shinin’
I was layin’ in bed
Wondrin’ if she’d changed at all
If her hair was still red

this song certainly qualifies as an aubade, a song or poem for lovers parting at dawn (or in my case, a woman parting from her hair).

By invoking the importance of oral literature I don’t mean that every five years a lyricist or storyteller ought to win the Nobel prize, but if a songwriter has spent a lifetime in a constant quest to mine and transform many of the most significant songwriting genres of their historical period, in so doing challenging and transcending social barriers, and thus the very notion of ‘populism’ – think of how Dylan’s much-derided Christian period has been re-made supreme by the American gospel community – then that person is certainly deserving of the world’s greatest literary accolade. As to the cynical response that Dylan was honoured primarily as a Scandi rebuke to all things Trump, I listened again to Blood on the Tracks today – songs which, in plotting an imploding relationship, give conventional narrative structure a bitter twist of genius – and thought that one small measure of the album’s timeless nature is the prophetic ventriloquism of ‘Idiot Wind’. Consider the vainglorious misogyny of the opening verses and chorus:

Someone’s got it in for me
They’re planting stories in the press
Whoever it is I wish they’d cut it out quick
But when they will I can only guess
They say I shot a man named Gray
And took his wife to Italy
She inherited a million bucks
And when she died it came to me
I can’t help it if I’m lucky
People see me all the time
And they just can’t remember how to act
Their minds are filled with big ideas
Images and distorted facts
Even you, yesterday
You had to ask me where it was at
I couldn’t believe after all these years
You didn’t know me better than that
Sweet lady
Idiot wind
Blowing every time you move your mouth
Blowing down the back roads headin’ south
Idiot wind
Blowing every time you move your teeth
You’re an idiot, babe
It’s a wonder that you still know how to breathe

These lines could spring like toads from the mouth of the Donald himself. (Compare ‘I can’t help it if I’m lucky’ to ‘I guess that makes me clever.’) Despite the continuing creepy echos of the current US presidential election, though (I noticed at the ceremony / Your corrupt ways had finally made you blind) the song’s not of course about a feud between two corrupt politicians, and in the last two lines the speaker displays a self-awareness of complicity in the train wreck that the average fascist sociopath could never reach – We’re idiots, babe / It’s a wonder we can even feed ourselves. As many Americans can’t, due to the rampant greed of tax-dodging moguls like Trump. Not that there’s anyone quite like Trump, and I certainly don’t mean to suggest Clinton’s hawkish hard-lines and alleged misdemeanors put her in the same category as his vile, abusive, post-truth hater’s burlesque.

But back to the Greeks, for ages I heard ‘Idiot wind’ as ‘Aeolian wind’ . . . Aeolus being the ancient Greek god of the wind, perhaps the dust bowl Homer was deliberately pronouncing it that way. Whichever way that particular breeze blows, my chemo cap’s off to Mr Dylan – maybe the rumours are right and he’s a cantankerous workaholic, a nightmare to work or live with, but I’m glad that, as the song says:

At the final end he won the wars / after losing every battle.

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My Cancer Journey: Incubating Integration


Last week marked a major turning point in my cancer journey, and not just because I am now a) bald and b) receiving a so-called ‘wonder drug’ that will most likely save my life. It was also a week which brought great news about the progress of my treatment so far, and a welcome second opinion on my upcoming operation. In addition, I received my first Housing Benefit payment, and although it plus my sick pay does not cover my monthly outgoings, I also completed two applications for grants to help me cope financially during my illness. I’ve still got a long way to go before full recovery, but after four months of uncertainty, fact-finding, and fighting for physical survival, I finally feel able to move into a calmer and more internal healing relationship with my illness.

For although I have been meeting the challenge of my disease head-on – battling with doctors for Vitamin D and iodine blood tests, seeking expert advice on diet, supplements, water quality and environmental pollution, and researching big pharma, bad and good – I have also felt uncomfortable with the metaphor of the ‘cancer warrior’. Some cancers are genetic, of course, but at least 30% are lifestyle-related, the result of a weakened immune system’s failure to cope with the normal process of evicting disordered cells. My breast cancer, I believe, is a sign that I have been living in a way that is out of balance with my body’s needs, and to significantly combat that tendency, I need to integrate parts of myself that have been wildly out of equilibrium for years. Mindful that my writer’s life had become sedentary and red wine-fuelled, I have given up alcohol, adopted a much healthier diet, and – helped by a rebounder my sister gave me – have made attempts (as far as one can while undergoing chemotherapy), to exercise more.

Rebounding from Chemo 3

I know, however, that I need to address my mental health too. For decades my chronic depression and anxiety, although milder in recent years, have dampened my ability to take care of myself. Miraculously the depression lifted shortly after my diagnosis: suddenly my life force roared that each moment here on Earth is incredibly precious. But cancer is practically a synonym for uncertainty, and inevitably there have been times of worry and rumination too: old habits that I want to break for good. In Jungian terms, I need to integrate my shadow; in the Blakean phrase I desire to, as much as possible, “cease from Mental Fight” with myself. Right now I wish to lay down my cancer warrior’s Spear, and embrace a gentler identity as a journeyer, delving not only into the etiology of my disease, but also the inner realms of my psyche, exploring and accepting all that I find there. I do not aspire to achieve a static state of perfect calm – I don’t believe such a state is either possible or desirable – but having struggled for so long with anxiety I now would like to make peace with the unknowable; to let my ‘Shrödinger’s breast lump’ lead me to a place where contradictory or difficult possibilities can co-exist free of angst and fear and self-doubt. Over the last months, hypnotherapy, counselling, massage, meditation, poetry and literature and being in nature have all been incredibly powerful teachers for me on this path, and from now on I will be focusing more and more now on the invaluable lessons they are offering me. In so doing – in deeply relaxing – I will help activate my body’s innate and powerful ability to heal itself.

The psychic journey is always also a political and cultural one, and I expect to be making such wider connections as my travels into the land of cancer continue. For now, I’ll just share this week’s good news, which came in three doses. First, on Monday my oncologist told me my tumour was responding well to treatment, being no longer large and round, but – as I could tell myself – smaller and ‘sausage-shaped’; a shrinkage she expected the next three chemo cycles to accelerate. Currently I am scheduled for a mastectomy and lymph node clearance, but if the chemo can reduce the tumour size enough, just a lumpectomy may be needed. I’m prepared for whatever operation is necessary, but the less radical option would obviously be physically and psychologically easier to cope with, so the oncologist’s assessment was reassuring to hear. As a Stage 2 breast cancer patient, though, with 2 infected lymph glands, I have found it hard to accept my Brighton surgeons’ insistence on removing all 30 underarm glands. While my breast is just a decorative organ, my lymph nodes perform a vital function, helping to drain my lymph fluids and filter any infection present: without them I’d be at risk of lymphedema, a painful chronic swelling of the arm, and also would have no defense should the cancer return. During my research I discovered that in America the standard procedure for a patient in my position is now to remove as few nodes as possible, and on Wednesday, thanks to a recommendation from integrative medicine consultancy Cancer Options (a consultation paid for by the charity Yes to Life), I visited the Royal Free Hospital in London for a second opinion on the question.

I sat for two and a half hours in a windowless room, but hanging around all day would have been worth the wait for the surgeon, Mr Ghosh. He immediately informed me that he was in accord with the American convention, and as a matter of course would just remove the nodes that drain the breast, 7-12 in total, leaving intact those that drain the hand. That made sense to me, and vindicated all my insistence on this point. Then, in a completely unexpected bonus, having examined my breast, Mr Ghosh said that in his opinion my tumour would virtually disappear under the next chemo rounds; in fact he was so confident that I was on track for a lumpectomy he would put money on it. I left London elated, my wiener sausage of a lump suddenly feeling like a seventies hors d’oeuvre ready for the surgeon’s stainless steel toothpick.


After a few more weeks marinating in big pharma’s most potent cocktails, that is. Thursday marked the start of Chemo Cycle 4, an important day: after three rounds of a regime entitled FEC, this was the first of my three Herceptin plus Docetaxel treatment cycles. “FEC” officially stands for three unpronounceable chemotherapy drugs, though I prefer my friend Bernadette’ Cremin’s defiant interpretation: “FEC you, cancer!” Docetaxel is another chemotherapy drug, meaning it kills fast-growing healthy cells as well as the cancer, but Herceptin is a targeted drug, locking onto cells on the surface of the tumour. I’m taking this combination now because I’m among the 15% of British women whose breast cancer is at least in part caused by an excess of the protein HER-2 (this acronym not being a feminist statement, but shorthand for ‘human epidermal growth factor receptor 2’). An expensive breakthrough drug approved by the FDA in America in 1998, up until 2006 Herceptin was only available widely in the UK for women with metastatic breast cancer. Women in Shropshire and Wales protested against the postcode lottery for primary breast cancer patients, and finally the NHS agreed to provide Herceptin to all patients who need it. The drug is not a magic bullet, and can in rare cases cause heart damage, but it has considerably improved life chances for women like me, and I was very glad to see that big needle sink into my thigh – without also sinking into my crimson bank balance. Thank you NHS!

More common side effects of chemo are fatigue, nausea, muscle and joint aches, tingling palms, mouth ulcers and hair loss, which I had managed to delay during my FEC cycles by wearing an ice-cap to numb the hair follicles.  This doesn’t work for Docetaxel though, so as of this week I’ve had to relinquish my hair, and with it a sense of an old identity card.

Ice cap

In addition, chemo side effects tend to accumulate and certainly all of these maladies are now affecting me more strongly. So last week’s transformation of my breast cancer activism into a more reflective healing process has come at a good time (followers of astrology will not be surprised to learn that it coincided with Friday’s eclipse of the Pisces Full Moon, conjunct my natal Chiron.) This doesn’t mean that I am going to disappear. I remain immensely grateful for – and in need of – all the astounding help I am receiving from friends and family, from shelter in spare rooms, days out in the country, wondrous cooking and volunteer kitchen cleaning, to prayers and pagan rituals, diverting books, CDs and DVDS, homegrown wheatgrass, massage gift certificates, headscarf wrapping lessons and loving comments here and on Facebook. But at the same time I sense that over the next few months I will be withdrawing into a quieter space: spending less time online and more with people in-person, walking slowly, reading and writing. My operation will likely be held at the end of November, and while I won’t be counting my lumpectomies before they hatch, I will spend the intervening weeks incubating a renewed, rebalanced self: a woman who feels ready to go wherever her cancer journey takes her next.

'Sister Naomi' - hair and photo by Akila Richards

‘Sister Naomi’ – hair and photo by Akila Richards

‘Luna’ by John Luke Chapman

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Shrödinger’s Breast Lump

Real-size cat figure in the garden of Huttenstrasse 9, Zurich, where Erwin Schrödinger lived 1921–1926. Depending on the light conditions, the cat appears either alive or dead.

Real-size cat figure in the garden of Huttenstrasse 9, Zurich, where Erwin Schrödinger lived 1921–1926. Depending on the light conditions, the cat appears either alive or dead.

Trapped in a box with a radioactive particle that would inevitably at some point decay, triggering the release of a fatal poison, until the lid was lifted, Shrödinger’s cat was infamously (and ridiculously in Shrödinger’s mind – his thought experiment was designed to critique a branch of quantum physics) both dead and alive. The indeterminate feline was much on my mind earlier this summer, when I spent two weeks wandering the ravishing streets of Prague, in full view and undeniably alive, but psychologically in a state of impossible simultaneity: feeling both gloriously healthy and terminally ill.

In May I had discovered a lump in my left breast. My GP said it was mobile – a good sign – but also large and hard: worrying. An ultrasound revealed the lump was definitely not a cyst, and also discovered swelling in a lymph node. On the verge of a teaching job in Prague, I asked if I should cancel my trip, but was told no, I could get the results when I returned. The doctor at the screening clinic also breezily announced that the worst-case scenario was a lumpectomy, so I left the UK feeling dazed at the prospect of surgery, but relieved that the situation didn’t appear life-threatening. I told colleagues and a handful of friends. In Prague I bought a notebook with an Albert Einstein quote on the cover: Life is like a bicycle: to keep your balance you must keep moving. But I wasn’t expecting the travels that would be demanded of me.

A week into my stay in Prague, the clinic called to strongly advise me to come home early. The armpit biopsy had proved inconclusive and another sample from the lymph node needed to be taken; the nurse also wanted to schedule an appointment with a consultant surgeon. She wasn’t allowed to give results over the phone, but reading between the lines I deduced that the breast lump was malignant. Still, though, the delusional mind is a wondrous thing. Perhaps they were just being extra-careful, I told myself. I arranged for a replacement tutor for my class, and booked a flight to the UK, returning to Prague the following day. If I did have cancer, I reasoned, I wanted to spend as much time as possible in a beautiful city doing what I love before a summer consumed by some horrible treatment. As the week went on I surprised myself with how calmly I was responding to the unfolding situation. My dreams, my friends and the Tarot all said not to worry. But then came Sunday night at the airport, waiting for hours in a long corridor as no news appeared on the departure boards, and ominous text updates from EasyJet culminated in the cancellation of my flight. Prepared to sleep at the airport, I searched desperately online for early morning flights, but none would get me to the clinic on time. With the opening of a hole in the Gatwick Airport main runway, the ground was shifting underneath me, and panic bubbled up.

I made it to the appointment in the end, a day late, to hear the news everyone dreads. I had cancer, it had most probably spread to the lymph nodes, and my liver and lungs would have to be tested as well. And far from simply requiring a routine removal, the tumour in my breast was now too big for a lumpectomy, and unless chemotherapy could shrink it I would need a mastectomy. To top it off, I learned that my lymph nodes would probably be ‘cleared’ – all 30 in the area removed – putting me at risk of lymphodema, a chronic, painful swelling of the limb. My friend Lee who attended the diagnosis with me said I took the news calmly, but in fact I was paralytic in the face of a slow-motion avalanche. My mother died of colon cancer at the age of 52, and ever since I turned 47 two years ago – the age she was diagnosed – I’d been aware that part of me was waiting for this verdict. Although beautifully cushioned by friends, for the 24 hours after receiving the news I was frankly a complete mess. It also didn’t help that I had to get up at four am to catch a bus to Heathrow and a flight to Prague via Frankfurt, an airport itself beset by storms . . .

That was almost two months ago. Emotionally I’ve traveled a great distance since then. As well as the deep support of friends and family, without which I don’t know where I’d be on this journey, writing has been crucial to restoring my equilibrium. Finally, having cleared Frankfurt airport and secure on the plane back to Prague, I picked up my pen and Einstein notebook – and the fear that had gripped my guts since the diagnosis magically lifted. I realised at that moment that terror was not a mandatory response to my illness, and no matter how much time I had left, I didn’t want to spend it seized by the physical pain fear causes. I was of course nervous before the results of my MRI scan two weeks ago, but by then I also knew that whatever the verdict, I would have to keep living in the same way – establishing healthy habits, and maintaining a positive outlook. Very fortunately the scan confirmed that the cancer had not spread to internal organs, and my final diagnosis remains primary breast cancer, Stage 2, which is curable. That sounds good to me.

From the date of the diagnosis I have taken an integrative approach to my treatment, embracing both orthodox medicine and complementary therapies. I have conducted safe juice fasts when appropriate, though now I’ve started chemotherapy I am eating to keep my weight up – a balanced diet of plants, nuts, grains, pulses, and a little animal protein. I am also availing myself of therapies provided by Macmillan and the NHS and local charities: hypnotherapy, counselling, and even a personal trainer, courtesy of Albion in the Community, my local football club. Educating myself about the disease has been important to me, and now after telling as many friends privately as I could, I’ve decided to go public about my condition. For one thing, in this era of sharing, it felt fraudulent to maintain an ‘AOK’ online persona; but also, I’d like my readers to know why I won’t be as active as usual on the arts and politics scene for the next six to nine months.

The chemo is making me very tired, but at the same time I can’t maintain the sedentary lifestyle I had fallen into as a writer – I have to get out walking for a couple of hours a day, and take far more breaks from the screen. Sadly I’ve had to put my Palestinian poetry anthology on hold, and the final book in The Gaia Chronicles will likely be somewhat delayed. While I still read as much as I can about politics I won’t be able to take as vocal a role in debates as I usually do. But I am still as interested in culture, the environment and social justice as ever, with a new focus of my disease: I’ll be incorporating my research about cancer into my world view and my future work. I would also like to avail myself of the big love that’s out there on social media, and as well as occasional blog posts I will be starting a FB page tracking my recovery, checking in and updating people as often as I can.

I have realised already how blessed I am, in particular to have so many people offering me every possible kind of support. I just ask for people’s patience, as everything here is happening a little more slowly than I intend. But although she might be napping in the sun, do not fret – this Brighton cat is well and truly alive, and wearing a pedometer clipped to her tail.

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Seoul Survivors Blasts Off (Again!)


Cyborgs by Lee Bul

A hole in the Gatwick main runway, transport chaos across Europe due to unseasonal storms, a cross-continental epidemic of terrorist attacks, including the assassination of Jo Cox, the flames of Syria still raging unabated while the UK news is all of Brexit, British political convulsions, and the Clinton-Trump mud-flinging match: it’s been a pretty tempestuous summer so far, and if I’ve been quiet about it all that’s because I’ve been dealing with a crisis closer to home – more of which anon, in a later post. Today I just want to celebrate an event I’ve been dreaming of  for many years, and only recently discovered would actually happen: the North American release of my first novel, Seoul Survivors.

How this day came about is a tale entwined with the fortunes of the global publishing industry, which you may or may not be interested in, but if the latter, hopefully the inherent human drama of a dream deferred will carry you through this next paragraph! For there is a huge disappointment behind today: my publisher, Jo Fletcher Books, had originally scheduled the novel to be released in the US and Canada in 2014, but the sale of JFB’s parent company, Quercus put these plans on hold. Quercus had experienced a sharp downturn in sales, including suprisingly in ebooks (it was as if everyone’s Kindle was full), and the founders of this highly successful independent publisher decided it was time to cash in their chips and – I expect – have some fun spending the profits from the Steig Larsson books. The sale to Hodder took a year, after which the new American division pushed my second novel Astra to the front of the queue. I was simultaneously a little sad and relieved to be part of a huge conglomerate: I prefer to shop with indy businesses for most things myself, but at the same time it was reassuring to know JFB, itself a small imprint, was secure. I was also thrilled to set Astra on her transatlantic journey, and loved launching her in Montreal and Toronto at Concordia University, the Ad Astra SFF Con and Bakka Phoenix Books earlier this year. I assumed, though, she would be followed by Rook Song, the second volume in The Gaia Chronicles, and couldn’t help feeling wistful about Seoul Survivors.

Then came the surprise announcement from Quercus USA that Seoul Survivors would be up next! I could have now fretted about Rook Song, but in fact I was delighted. It’s not easy to grow a readership in a country you don’t live in – especially when your books, like The Gaia Chronicles, are set in yet another continent – and I had always thought that Seoul Survivors could be a breakthrough novel for me in North America, helping to establish my name and build curiosity about the rest of my work. A cyberchiller set in Seoul, where I lived for three years in the late nineties, Seoul Survivors is on one level my response to the impact of Western culture on the traditional values and lifestyles of South Korea. The main characters are a Canadian fashion model, a British drifter, a North Korean refugee, a Korean-American bioengineer and a good old-fashioned American sociopath, and high among my literary influences at the time were William Gibson, Margaret Atwood, Kathy Acker, and the Korean-American novelist Mia Yun, who very kindly provided me with a endorsement for the novel. With all these resonances at play, I have always had a secret feeling (okay, grandiose fantasy) that Seoul Survivors could strike a chord with North American readers, not only of SF, but also transgressive fiction and world literature.

There’s one more reason I’m very happy today too: after errors first on my part and then in the editing process, this edition of the book will be the first to include a proper acknowledgement of Mama Gold, the ex-pat band whose songs I shamelessly lifted/paid immortal homage to in the book. Thanks again Josh Schwartzentruber, Toby Benstead, Michael David Yantzi and Geoffrey Viljama for your patience – I hope back catalogue sales sky-rocket!  Today I’ve celebrated this milestone, and all those memories of wild nights in Seoul’s underground scene, with a Seoul Survivors fusion brunch: salad, kim chi and a fried egg in my Korean bibimbap bowl, chopsticks from my O’Kim’s beer mug (there’s a map of Ireland on the other side), green tea in my tiny Korean teapot, set out with the first UK edition and my Canadian passport – on which I travelled to Seoul – and listening, in honour of my Yankee psychopath Johnny Sandman, to the spooky thumps and tremours of David Lynch’s Crazy Clown Time.  Thanks for being part of the party, and if you’re interested in more weird electronica and tales of South Korea, for the full Seoul Survivors soundtrack, and more about its making, click here  . . .



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Palestinian Poetry in Translation: A Call for Submissions


With a big thank you to Andy Croft of Smokestack Books for his faith in my editorship, and the University of Chichester for its financial support of the project, I am very happy to be inviting submissions for a bilingual anthology of Palestinian poetry in translation, forthcoming in June 2017. The book will present up to five poems each by 10/12 Palestinian poets, representing a diverse range of voices, both new and established, from the Occupied Territories, the diaspora and refugee community, and ’48 Palestinians.  The furnace doors are open: stoke me with poems!


Please email between three and ten poems and their English translations in a Word document to N.Foyle@chi.ac.uk. The original poems may have been previously published in journals, other anthologies and single-authored collections.  Bilingual Palestinian poets are most welcome to submit their own translations of their poems.

The translations may have been previously published in journals and anthologies, but not in translated collections.

All modes of poetry are welcome, including performance poetry, traditional forms and experiments with form and voice. Please note that I am a non-Arabic speaker and the quality of the translations will form the primary basis of assessment.

The Word document should include short biographies, highlights of previous publications, and the email contact details of both the poet and the translator. The total submission (excluding biographies and publication highlights) should not exceed 20 pages.

The deadline for submissions is midnight GMT Sept 30th 2016. The final selection will be made by Oct 31st 2016 and the book will be published in June 2017.

All contributors will receive one copy each of the anthology from Smokestack Books, and a 40% discount on future copies. The project is being co-funded by the University of Chichester, enabling an honorarium of up to £50 (depending on number of poems) payable to each contributor on publication. In the event of a reprint, an additional fee will be paid in lieu of royalties.

The publisher and I also undertake to apply to other funding bodies to increase the payment to translators to professional rates, and to cover for the costs of launches in the UK and Palestine; and also to launch a crowd-sourcing campaign with the aim of ensuring payments to poets match those to translators. None of this additional funding is guaranteed but most of it cannot be applied for until the final selection is made.


A Call for Submissions_Smokestack Books_Arabic JPEG

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Defying Dark Skies: the Eco-Warriors of the West Bank

As promised, here are my photo diaries from my recent week in the West Bank. I made it in to Israel-Palestine safely from Cyprus, though what possessed me to put a copy of Kahlil Gibran’s The Prophet in my hand luggage, I do not know! Although it is not illegal to visit the West Bank, you have to do so via Israel, and will be refused entry if you announce your intention to travel on into the occupied territories. I had half-baked notions of posing as a Christian pilgrim, but on finding The Prophet the Israeli security guard in the departure lounge decided I was ‘studying Arabic’ and brought in a higher-up to question me. ‘It is love poetry!’ I cried – ‘My mother had this book!’. When I said I was visiting an Israeli friend, he wanted to see her photo. I didn’t have one, and they let me through in the end, laughing about my battery-less laptop, but honestly – when it comes to censorship and racial profiling, Israel leads the way.

When it comes to extra-judicial executions, Israel also stands in the top of the league table. It was sad and sobering to be arriving in the country just after another three people – two Palestinian youths and one Israeli settler –  had been killed in the latest incidents in the wave of violence that began in October as a on-going series of random attacks committed mainly by Palestinian youths on soldiers, police officers and settlers. No-one I spoke to during my visit thought the attacks represented a new intifada (organised uprising); they are committed by individuals, not factions, and my Palestinians and Israeli contacts alike considered them to be tragic acts of despair, and symptoms of the increasingly untenable injustice of the occupation, which has responded with force: 28 Israelis and over 180 Palestinians, including 49 children, have been killed during this period. These deaths, as well as the hundreds of injured people, are a cause for great sorrow; and should also be a powerful motivation to find, at last, a just solution to this decades-long conflict. There was anger, also, from the Palestinians, though, at the contempt for life and due process shown by the IDF when it comes to apprehending the alleged knife-wielders. And Israel’s support for a shoot-to-kill response suggests to me that a political solution is the last thing the current government wants. The cycle of violence works in Israel’s favour, justifying and escalating its dehumanising rhetoric, and its colonial control of what is left of their land.

The volatile situation is not, though, a reason not to visit – people need to see the context in which these violence is occurring. I came to see friends of both nationalities, and make new ones, some of whom are unable to travel to see me, simply because they are Palestinian. Coming to Palestine is a huge privilege I am all too aware of after visiting the camps in Lebanon, and I hoped to make the time count by exploring and celebrating Palestinian leadership in the field of environmental justice: healing the earth by healing human ecosystems and promoting human diversity.


In Bethlehem I visited the Palestine Museum of Natural History, a project of the Palestine Institute of Biodiversity Research, a scholarly and activist centre co-founded by Mazin and Jessie Qumsiyeh. The next day was my birthday, one the best ever, spent wandering in the gardens of the Museum, and putting my volunteer editing skills to work in the office on a grant application and article. Funny how it didn’t seem like work. More photos and reflections here.


My time in Bethlehem was all too short, but as I was staying right opposite it, I squeezed in a quick visit to the Church of the Nativity before taking the mini-bus to Ramallah the day after my birthday. In 2002, during the Second Intifada, the Church was a  tense site of conflict, events recently dramatised by The Freedom Theatre of Jenin refugee camp in their production The Siege, which I saw last year on its UK tour. There was more Palestinian culture in Ramallah, where I spent the evening listening to my favorite instrument: the plangent, pear-shaped oud. More photos and reflections here.


Finally, I spent three nights at Marda Permaculture Farm in Marda village, just down the hill from the illegal Israeli settlement of Ariel. The fourth largest settlement in the West Bank, Ariel creates significant problems for the villagers, including floods of raw sewage that cascade down through the olive groves into the streets. The settlers’ shit isn’t only a gross insult and human health hazard: by damaging biodiversity, it is also thought to have contributed to the epidemic of wild boar now afflicting the local farmers. What is certain is that Israel has outlawed all possible ways – guns, poison, tranquilizers – of dealing with the ferocious, rampaging beasts. But thanks to fences made of recycled tyres, Murad al Kufash continues to produce giant organic vegetables; press olive oil for his contract with Lush cosmetics; welcome volunteers; and teach permaculture to other Palestinians. More photos and thoughts here.

I spent my last 24 hours in Palestine in East Jerusalem, visiting that famous hub of Palestinian cultural and political activity, the Educational Bookshop, and having dinner with Israeli friends who brought me up to date on all their anti-Occupation activity. Despite the overwhelming feeling that things are just getting worse in Israel-Palestine, I arrived back home feeling uplifted. The Palestinians are still planting olive trees, and more and more Israelis and internationals openly support the BDS Committee’s boycott, divestment and sanctions campaign: skies may be dark, but resistance is blooming.

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Bearing Witness in Lebanon: A Photo Diary Tour

As FB friends know, I’m just back from an incredible two weeks in the Middle East; first in Lebanon, as a member of charity Interpal’s Bear Witness women’s convoy, visiting refugee camps; then the West Bank, where I was exploring the Palestinian eco-resistance to the Israeli occupation. I chose to write about my trip on Facebook partly because I didn’t have time to travel, share on social media *and* blog, but also for security reasons: Israel and Lebanon are not the best of mates, and I was worried about storing my photos of the camps and Beirut on my camera and laptop, which Israeli airport guards have been known to rifle through. Posting my pix each night to Facebook was the answer, and it was only natural to turn my albums into photo diaries, a habit I continued in the West Bank, again because I wanted to delete any evidence I’d visited Palestine before I went back to the airport. (My devices weren’t searched in the end, but I wasn’t wrong to be paranoid: I was interrogated on the way in about my choice of reading material – turns out The Prophet, by Khalil Gibran is a suspect text to Israeli security!) I also tweeted the links, but although it was great to share my travels as they happened, the problem with FB and Twitter of course, is that your posts soon compost down into the mulch of dead news. Photo albums at least can be accessed via links, so to assuage my guilty blogger’s conscience, I’ve decided to collate them here, in two posts, one for each trip.


BEARING WITNESS in LEBANON with INTERPAL:  Feb 14 – 19th 2016

DAY ONE: Syrian Refugee Camps in Bekaa Valley

Barelias and al-Farah are two of the better-organised Syrian refugee camps in the Bekaa Valley, a fertile plain between Mount Lebanon and the Anti-Lebanon mountain range, across which lies Syria. More photos and reflections here.

DAY TWO: Nahr el Barad Camp, Northern Lebanon


Nahr el Bared camp was shelled by the Lebanese army in 2007 in an effort to rout what I was told was a Syrian branch of Al-Qaida. The camp was destroyed and its 45,000 Palestinian inhabitants evacuated to nearby al Beddawi camp, seriously straining its resources. Nine years later, Nahr el Bared is only half-reconstructed. More photos and reflections here.

DAY THREE: El Buss and Jal el Bahr Camps, Tyre.


No photos were allowed of el Buss camp, where we visited a women’s programme center and two centres for children with disabilities. But waiting to get in, we took a snappy stroll along Tyre’s beautiful old corniche, and later on in the unofficial camp of Jal el Bahr, Haneen and her friends were happy to have their picture taken. More photos and reflections here.

DAY FOUR: Ein el Hilweh Camp, Saida.


Ein el Hilweh is the largest Palestinian camp in Lebanon with about 100,000 inhabitants living on top of each other in its chaotic concrete maze. Between buildings collapsing in storms, and clashes between illegal Syrian Islamist militants and the camp’s internal security force, Ein el Hilweh is a dangerous place. But the many murals of Palestine keep the dream of return alive. More photos and reflections here.

DAY FIVE: Shatila, Beirut.


We ended our visit to Lebanon in the camp that, more than any other, is synonymous with the brutal persecution of the Palestinians: Sabra-Shatila, where between 800 – 3500 refugees were massacred over three days in September 1982 by a Lebanese Christian militia, who left the narrow alleys and small rooms of the camp littered with the bodies of raped, tortured and butchered civilians. Today the camp is also home to Syrians and Lebanese, and a few creative NGOs, supporting schools and community projects in the overcrowded buildings -which also host many declarations of the Palestinian commitment to return to the homes they were forced to leave 68 years ago. More photos and reflections here.

Well, that’s my online experiment for the day. I hope it’s not too fragmentary, is easy to navigate, and gives a sense of this remarkable journey. Next, Palestine gets the cross-platform treatment!

Posted in Disability, Lebanon, Politics, The Middle East, Travels, Uncategorized | Tagged , , , , | 2 Comments

2015: The Year of Listing Wildly



Light and Colour (Goethe's Theory) - the Morning after the Deluge - Moses Writing the Book of Genesis by Joseph  Turner

Light and Colour (Goethe’s Theory) – the Morning after the Deluge – Moses Writing the Book of Genesis by Joseph Turner

Dec 31st and not only do I realise I haven’t blogged since July, but I find myself unable to post the traditional list of the year’s top ten books, films, or significant events. Far from this being the year of living listlessly, I am afraid the only tallies I can provide right now are a sad roll call of friends who have died in the last four months, and a long unscrolling moan of all the marking, household chores and writing projects that the year will now leave undone. Since September I’ve been teaching full time (though unfortunately not for full time wages), and the Christmas season, lovely and indulgent as it’s been, has seen me careening madly from tissue paper hats to stacks of undergraduate poems, essays and novel chapters. Work, especially satisfying work, does help stave off grief, and as well as staying up late to write poems in memory of novelist Irving Weinman, postcolonial scholar Bart Moore-Gilbert and translator Yuri Drobyshev (the late partner of my PhD supervisor Carol Rumens), I’ve paced myself with the marking, allowing ample time to relish my student’s talents. Teaching (and moaning about it) aside, it’s an unwritten part of the writer’s job to nurture new generations of wordsmiths, as Bart, Irving, and another late friend Lee Harwood, did so warmly for me.

I am especially pleased to be now starting the pile of submissions for Making It Strange: Writing the Science Fiction, Fantasy and Modern Gothic Novel, the first module I have solely designed and delivered in my teaching career, introducing students to (sneaky all-time book list alert) classic texts including Octavia Butler’s tentacular dystopia Dawn, Russell Hoban’s linguistic tour-de-force Riddley Walker and Monique Wittig’s avant-garde lesbian feminist call-to-arms Les Guérillères, as well as to my own ultra-zealous worldbuilding methodologies (hey kids, don’t stop at a map, why not write your world’s own wikipage!). The students’ enthusiasm has been incredibly rewarding, and reading the first two submissions, I feel tingles of pride in what they have accomplished.

Professionally, 2015 was a milestone in many respects. At Chichester, balancing out my still precarious part-time status, I was one of 14 university-wide recipients of a Research Development Award that will fund several research projects over the next two years (more on that below). I also became my department’s Equality and Diversity Champion, and have done my best in the role to support students with issues relating to access and inclusion, including learning more about autism. I can report that one stereotype has been smashed already: reading a book on Asperger’s Syndrome I learned that two of my favourite writers, Emily Dickinson and W.B. Yeats, are thought to have had the condition – as my own students have taught me, being on the spectrum doesn’t necessarily mean an inability to think metaphorically. On the subject of diversity, my appearances this year at four conferences, History Matters (discussing the dearth of Black British history teachers and scholars), the SOAS Spring Literature Festival (exploring Cultural Confluences), Blind Creations (celebrating the relationship between blindness and creativity) and the Muslim Institute’s Winter Gathering (which I left fully signed up as a new MI Fellow), all greatly deepened my knowledge of cultural resistance on many fronts.

Well, despite myself, the seasonal listmania seems to be taking hold . . . and as it does seem important to reflect on the year’s political events, I will just mention that I was glad to give a talk this autumn on the cultural and academic boycott of Israel at Brighton’s regular eclectic salon, The Catalyst Club, and also delighted in being a very naughty voter, paying my £3 to help get Jeremy Corbyn elected, hurrah! Rather less joyfully, I also wrote to my MP, cold-blooded Tory Simon Kirby, several times, protesting cuts to the Independent Living Allowance and the government’s plans to bomb ISIS while ignoring Syrian calls to combat the genocidal Assad regime by instituting a no fly zone over the country. I wrote to Brighton Pavilion’s Green MP Caroline Lucas about the latter issue too, and was pleased to see her later step down from Stop the War, which has so shamefully blocked Syrian voices in this urgent debate. The vote was lost, as we all know, and the war continues, toward its sixth year. It is very hard to know how to help, but I tried to do so this year by donating to Migrant Offshore Aid Station, who rescue refugees at sea, Middle East Children’s Alliance, whose Christmas appeal supported Palestinian and Syrian refugees, and the White Helmets, an unarmed volunteer force who, at huge risk to their own lives, pull people from the buildings Assad bombs.

2015 also saw the publication of Rook Song, and the launch of Astra in North America and though my lists of things to do to support both books are largely still unticked off, I will be getting back to the peculiar task of self-promotion in the New Year. For all that teaching will pay off in 2016 as I don’t go back in the classroom until September. Next semester is earmarked for research, which brings me to the happy announcement that, weaving my political, cultural and literary interests together, one of the top hats I’ll wear over the next two years will be the editorship of an anthology of Palestinian poetry in translation, forthcoming from Smokestack Books in 2017. Work will start in earnest in February when I visit Palestine to research permaculture and biodiversity in the West Bank for an article for the Nature issue of Critical Muslim. The anthology will be a mixture of established and new voices, and I am determined, if at all possible, to include Palestinian poets from Syria.

But first I have to proofread the next book in The Gaia Chronicles, and start the final novel of the quartet. . . Between teaching, writing doorstopper SFF, and trying to keep my poetry oar in, I do feel like a storm-tossed craft at times, but so far I have managed to land at most of the islands in my small archipelago. Except the one called Goodreads . . . I was heartily buoyed, though, to see Rook Song end up on an Effing Best of 2015 list, and I do still want to write about my talk for the Muslim Institute Winter Gathering, though, so the promise of a full post (plus my own blinder of a list!) on my current reading focus, Islamic SF, seems like a good note to end on – along with my best wishes to you all for smooth sailing and admiral adventures in 2016.

Cutty_Sark_Figurehead                                                                            Figurehead of The Cutty Sark

Posted in Astra, Blindness, Disability, Environmentalism, Equality and Diversity, Green Party, Israel-Palestine, Novels, Poetry, Politics, Rook Song, Travels | Tagged , , , , , , , , | Leave a comment

Blind Creations: Lighting the Grow/volution!


This image shows writers Frédéric Grellier, Romain Villet, Naomi Foyle, Rod Michalko and Ryan Knighton sitting on chairs arranged in a row in front of a long computer podium. Hannah Thompson is standing behind the podium, addressing the auditorium audience.

This image shows writers Frédéric Grellier, Romain Villet, Naomi Foyle, Rod Michalko and Ryan Knighton sitting on chairs arranged in a row in front of a long computer podium. Hannah Thompson is standing behind the podium, addressing the auditorium audience.

As the Greeks vote a resounding NO to austerity, here in the UK disabled activists prepare again to storm Westminster on Wednesday to protest the abolishment of the Independent Living Fund – everywhere the war on the poor is cutting deep, and people are fighting back. We living in desperate times, and yet also there’s an exciting spirit of defiance in the air. My dream is of a global grow/volution – a gradual and profound revolution, the transformation of our cruel and corrupt global economic system into one rooted in the principles of human rights and respect for difference. Gradual, because while sudden change is a great catalyst, too many radical upheavals breed insecurity and violence, while the creation of a just society requires reflection, compassion and co-operation. Just back from Blind Creations, a 3 day micro-arts festival and conference on the relationship between blindness and the arts, held last week at Royal Holloway University of London, I am more convinved than ever that such a world is possible.

As I told organisers Hannah Thompson and Vanessa Warne, and will now officially state, Blind Creations was the best conference I’ve ever attended. The weather, food and setting certainly helped. The campus’s Founders Building, a vast feast of red brickwork and Corinthian columns, chimney crenallations, stone corbels and quoins, is set in lush woodlands, while the catering included asparagus soup and a BBQ picnic in the grassy quadrangle, with grilled haloumi and aubergine kebabs for vegetarians. All this during Mediterranean sunshine levels! Yes, ivory or red brick, the towers of academia have their perks. But privilege is there to be redistributed – check out sustainable agriculture company grovolution, who use technology first developed at NASA* – and sometimes universities, as institutions of learning and communication, do in fact provide space for real cultural exchange and change. At Blind Creations, the programming and, above all, the people involved, made this gathering a powerful opportunity for sighted people – and institutions run largely by them – to learn from the experience of blind and visually impaired people.

To start with, there was a marvellous breadth of knowledge on offer. As an SF ‘world builder’, I thoroughly enjoyed the multidisciplinary approach – art, history, philosophy, literature, sociology, museum studies, media studies, film, technology, theatre, post-colonialism and linguistics were all represented. It was also exciting to be part of such an international occasion, with delegates from countries as far as India, South Korea, Japan and Brazil, while I enjoyed giving my schoolbook French an outing and – for a particular reason I will disclose in my next blog – the presence of so many Canadians gave me a happy sense of connection with the land I grew up in. But though the intellectual and geopolitical range of the conference were hugely stimulating, for me, the social atmosphere was most revelatory aspect of the experience. While student volunteers were on hand to support the visually impaired participants, on the first day Vanessa asked us all to co-create a culture of ‘support and respect’ – if a blind person needed help navigating the space, they were asked to put up a hand, and sighted people were asked to respond. I had already begun approaching blind delegates to say hi – this was no time or place to be shy – and was already discovering that the conference etiquette was an ice-breaker into warm waters.

Normally at conferences I feel a degree of social awkwardness, but here the combination of shared interests, a shared journey and physical touch, infused these navigational encounters with mutual good humour, curiosity and a delicate intimacy. I felt comfortable asking for help in my guiding technique – am I giving too much info, too little? I had discussions about touch in different cultures and families; I stopped to explore my tactile environment. Conversations felt warm and personal, as did the atmosphere of the conference as a whole. Though the place was filled with experts in their fields, even celebrities, there was no sense of big egos bumping up against each other here. Rather people chatted as though we were all old friends, the conference generating a social force field perhaps akin to what blind theorist Piet Devos called ‘relational identity’ – it was interconnectivity in action, or as Canadian writer Ryan Knighton put it ‘an economy of trust’.  During our plenary session, Ryan was also responsible for a quip about urinals that sent the whole auditorium into gales of laughter, a long moment of wonderful uproar I can’t recall experiencing at any other conference I’ve attended. Overall, the palpable sense of community at Blind Creations made me think about the nature of inclusion – what is gained from the active inclusion of disabled people in society is a rich and genuine sense of being stronger together, creating a world where caring for each other is not a devalued and monetised job, but a shared human experience. As plenary speaker Georgina Kleege concluded her talk: ‘when we open up the culture, we change the culture’. This, to me, is a truth at the heart of the grow/volution.

Blind Creations also provoked more personal reflections. Though I was invited to discuss how I created my visually impaired characters in The Gaia Chronicles, I write about a range of disabilities, and am also the Equality and Diversity Champion in my Department at the University of Chichester. I know that there are links between my creative and political involvement in disability studies, and my personal life, though I still find it difficult to fully articulate these. As readers of this blog know, I have a history of anxiety and depression that dates back to early childhood. I am well aware that mental health conditions are sometimes considered ‘hidden disabilities’, but for various reasons I have shied away from claiming, officially or otherwise, this identity. Disclosure and self-identification, here, at work, in my writing – is something I still need time to reflect on. But this blog is already so long, I will postpone all that yet again! For now, I just want to celebrate the remarkable and joyful time I have just had – an experience that in some ways was a great antidote to anxiety – and to share some of the things I learned. The Blind Creations programme and audio archive are here, but these (with photos for the benefit of what plenary speaker Georgina Kleege helpfully terms the SVP or ‘Severely Visually Dependent’ community) are five of my personal highlights:

1. Encountering ‘Too Big To Feel’ by blind artist David Johnson

This image shows David Johnson's art installation 'Too Big To Feel' - 16 large white concrete mounds, and one red mound, set in the grassy embankment by a path on the Royal Holloway campus, to read, in Grade 2 contracted Braille, 'Seeing Red'. The artwork is seen here with two female conference delegates, one of whom has  short, bright red hair

This image shows David Johnson’s art installation ‘Too Big To Feel’ – 16 large white concrete mounds, and one red mound, set in the grassy embankment by a path on the Royal Holloway campus, to read, in Grade 2 contracted Braille, ‘Seeing Red’. The artwork is seen here with two female conference delegates, one of whom has short, bright red hair

Hannah blogged about the installation of this piece, but did not say what the braille phrase meant. I tried to discover online, but could not find a key to Grade 2 Contracted braille (in which some braille characters stand for syllables, not letters). I sensed that part of the point of the piece was to demonstrate inaccessibility, but nevertheless I wanted to know what was being said. Finding myself sitting next to the artist I plucked up my courage and asked him to reveal the secret. At first David said he wanted to preserve the mystery of the artwork, but when I persevered, saying how much I liked the title’s pun on ‘too big to fail’, he kindly relented and told me the phrase was ‘seeing red.’ As I replied, knowing this did not at all reduce the piece’s power to me – quite the opposite. Rather, I felt the anger expressed directly linked disability campaigners to the current crisis in Greece, making a braille-iant comment on austerity. The phrase also described the conference itself, with its goal of ‘reading’ vision, and the artist’s own vision, which he told me can sometimes be a field of red. Visual impairment, as the conference discussed, is a varied and individual experience.

2. Learning about ‘the grammar of touch’ from Russ Palmer and Riitta Lahtinen

This image shows Riitta Lahtinen and Russ Palmer laughing and smiling, with their joined hands outstretched to the viewer.

This image shows Riitta Lahtinen and Russ Palmer laughing and smiling, with their joined hands outstretched to the viewer.

Readers of Rook Song will know that one of the book’s central characters is Asar, a deafblind young man with learning disabilities, who communicates by touch with his partner, carer and manager Sepsu, and is viewed as a prophet in his society. I was at the conference to talk about how I came to create Asar and the other visually impaired character in The Gaia Chronicles, Hokma Blesser. In the course of my research for Asar, I had taught a creative writing workshop at Stay Up Late, a charity that works to ensure people with learning disabilities can attend gigs, but my other research had been online, and not as detailed as I wanted. So I was thrilled to hear a presentation by the married couple Russ Palmer and Riitta Lahtinen on using social haptic communication (touch-based language) to interpret art for visually impaired people. Russ, who is deafblind with two cochneal implants, and Riitta, the Head of the Communication Unit at the Finnish Deafblind Association, later generously allowed me to ply them with questions about their work. I would have to write another whole blog post to share what I had learned, but suffice to say I am now excited about returning to Asar in Book 4, armed with a far greater knowledge of his language.

3. Meeting the Indian delegates

This image shows a smiling Hemachandran Karah sitting outside on a chair on a lawn.

This image shows a smiling Hemachandran Karah sitting outside on a chair on a lawn.

Being the descendent of a nineteenth century Scottish missionary in Calcutta, and having spent time in India looking into my mother’s family history there, I was glad to meet the blind Indian delegates Aravinda Bhat, whose talk on Borges led to a shared appreciation of jokes in Finnegan’s Wake; and Hemachandran Karah, whose talk on blind Indian writer Ved Mehta I missed, but whose conversation on the last day brought me up to speed on Heidegger in India, and Kindle screenreading technology for the visually impaired. I was also very pleased to make the  acquaintance of blind Indian-American scholar Sejal Sutaria, whose work on Dalit and Indigenous activist writing in India is leading her to desire an active connection with the Palestinian struggle. Overall, there was a strong post-colonial thrust to the conference that I hope can be built upon in future such events – it would be very good to hear from blind and visually impaired African and Middle Eastern speakers, or (considering their absence here) to understand what obstacles they might face in attending international events.

4.  Experiencing the Singing Bowl Table

This image shows a table display of bronze bowls, wooden sticks, a cloth covered gong stick, and a flat bronze gong in a shape that resembles a bell, a Tibetan Lama's hat, or a Buddha.

This image shows a table display of bronze bowls, wooden sticks, a cloth covered gong stick, and a flat bronze gong in a shape that resembles a bell, a Tibetan Lama’s hat, or a Buddha.

Rook Song readers will also know that Asar gives his prophetic counsel accompanied by music, most significantly Himalayan singing bowls. According to legend, these are made of seven metals, including meteorite iron which the lamas believe helps meditators enter into astral travel. So it was the most marvellous serendipity to meet artist Aaron McPeake at the conference, and see and play his bronze singing bowls. Holding the bowls on my flat palm, up near my ear, Aaron teaching me how to play properly – keeping the wooden stick moving with a steady pressure and constant speed – I felt the overtones carve out their strange, calming space within me. A former stage lighting designer who has met Samuel Beckett (in a London caf; Sam was almost chirpy), Aaron lost much of his sight by 2002, provoking a move from stage lighting design into art. He also makes slate works, films, responses to Icelandic landscapes, gongs and bells all of which you can see and hear here.

5. Clarifying My Perception of Blindness

Due in part to significant relationships I have had with highly creative and successful blind people over the years, I do not perceive blindness as a personal catastrophe. As a fiction writer I have aimed to convey my visually characters as people with complex identities and active roles in their societies. Nevertheless, I enjoy my sight and – not even liking to lose my hat – would not welcome losing it. And one of those relationships, a difficult one with an employer, did leave me with the impression that the person’s blindness was a factor in their inability to trust other people, and concomitant need to control them. That’s an impression I am reassessing, and in any case certainly wouldn’t generalise from. As a sighted person, I know that I have far more to learn and unlearn about blindness. But the sheer happiness radiating from so many blind people I met at the conference was a powerful reminder of the truth of the refrain of Hannah Thompson’s blog Blind Spot – that blindness, far from being a tragedy, is simply another way of being in the world, and one that can offer many pleasures. At the Gala BBQ I watched David Johnson encounter, with delighted surprise, half a baked potato on his plate. Suddenly, a slightly altered phrase from Peter Pan popped into my head: ‘To be blind must be an awfully big adventure’. Tinker Bell, of course, says ‘To die’, but except in the sense that they are both experiences that many people fear, I don’t at all associate blindness with death. For a sighted person going blind is by its nature a loss, but that is not the end of the story. Any loss is also fundamentally a change. Life continues, allowing new growth, both radical and subtle, to occur. Returning from Blind Creations I am more certain than ever that should I become blind, I would adjust, and find value, pride and beauty in my new mode of being. Life, after all – as my CBT counsellor tells me – is to a large extent how you look at it. So thank you again, Hannah and Vanessa, for the tremendous and re/visionary experience of Blind Creations.


*For the record, I hit on the term ‘grovolution’ as I was writing, then Googled it. I rethought my spelling, as I don’t want to infringe on copyright, or cause confusion, and in any case I like using the whole word grow rather than something snappier. Growing is usually a slow process, with breaks and reversals, hence the back slash.

Posted in Astra, Blindness, Disability, Mental Health, Novels, Politics, Rook Song, Uncategorized | Tagged , , , , , , , , , , , | Leave a comment