Posted by: stelladuffy | November 21, 2014

Ake Festival joys

I went to Nigeria this week.

Even writing it feels astonishing to me – in many ways Nigeria, as with any of the African nations, feels much further from Tokoroa & my childhood dreams of how and where to travel than Europe, more different, and therefore more distant.
Also, I’m not very good with heat (freckled skin) and I get claustrophobic in crowds. So naturally, I jumped at the offer when the British Council Lit dept asked if I’d like to fly to Lagos (wikipedia says it’s the most populous city in Nigeria, the second fastest-growing city in Africa and the seventh in the world), then travel on to Abeokuta and the Ake Arts & Books Festival, to teach some workshops.

It was brilliant. Utterly different and yet, also, not that different at all – book festivals are not that different the world over, writers are not that different, teaching workshops is not that different, people keen to write are not that different, teenage students are not that different, people are not that different.
But it was new. Very new. I think, the older I get, the better I am with new. I think this is a good thing. This is a repeat version of what I shared with friends & family on facebook …

ironing

ironing

Sunday flight into early Monday arrival :
Women carrying huge baskets of bread on their heads, people hanging off the open sides of buses (which are vans anyway), glorious old buildings in Havisham-style decay, a fuzzy sun, electric wire tangles, people collecting water from plastic tanks, a child brushing his teeth at a street tap – really brushing hard, shanty towns, little ones dotted, then one wide, shanty villages under bridges, Jesus and the Prophet vying for attention, mini-commerce of every kind, a tailor ironing on the street, a man shaving another man’s head on a step, beeping cars and vans hairs’ breadths apart – or not, everyone up and working early early, a rubbish dump -picked over, old colonial buildings pretending it was all fine, always fine, and across the bridge higher and taller in the hazy distance – island of Oz? Made it. Lagos (driving in and out of for four hours) looks astonishing, felt thrilling, more there on Wed, for now Abeokuta, lush hills and red red soil and still noisy and busy, but far smaller, and, after 26 hours awake, a little nap before it begins. Oh and lizards. lots of them, big and leaping. Yay for lizards.

Abeokuta setting sun

Abeokuta setting sun

Monday : This afternoon, in Abeokuta, after the Lagos early morning speed-date, we went to two hotels before finding ours, met the glorious festival-maker Lola (a Fun Palace maker if ever there was one), failed to sleep despite having flown all night, swam to wake myself up (and scare the teenagers who think pools are for kids), ate okra stew/soup and pounded yam (liked the yam, okra yummy spicy but a bit too gelatinous for me, crab claws, beef in stew good, liver and tripe less keen on – but I tried them!), then climbed Olumo rock. The tree in these pics translates as “dogged and resilient” – so I hugged it. Of course.

"dogged and resilient"

“dogged and resilient”

The story of this rock and this space was told by two brilliant guides who were speaking of their own ancestry/whanau/whakapapa which was very moving, it’s an astonishing climb esp when not quite dressed for it (small heels, didn’t know it was planned after lunch!). I made it to the top and got to encourage brilliant Winnie from Lagos to go for it, and had the joy of her running – up the steep scary bit – into my arms, thrilled she’d broken her heights fear. Running up rock, 75 degree-ish rock (really, that steep at the top). Incredible. SO life-affirming. On the way back to dinner with the volunteers and French contingent, we went to a street market (more literally street than I’ve ever known) where I bought one of those tops I’d never buy at home. It was, I now see, made in Thailand. On the way from the market we drove past a little girl, my guard-daughter Ruby’s age, in school uniform, doing her homework, using a stool for a table, outside the street stall that might also be her family home. It was dusk and dusty and hot and noisy and she was engrossed. And it didn’t make me think ‘oh we have so much and she so little’, it made me think she was amazing. Pen, paper, sorted. Teaching schools workshops tomorrow. Heading to bed after 36 hours awake. Feeling lucky. Sending you all love. (I know this is lengthy, feel free to ignore, I tend to have health or work adventures, not travel ones – often the former precluding the latter – so am revelling for now.) Night all. Morning NZers.

climbing partners

climbing partners; Winnie, Elizabeth, Sophie

view from the top

view from the top

Tuesday : Taught all-day workshop to 21 x 15/16/17 yr olds, impro for writers, brilliant kids, private school, parents often in UK/US sending them home to get educated, def not an Eton-type private school, but likely making future leaders nonetheless. Outed myself because it was relevant, tiny frisson, no more shock waves than would be among same age kids at home. (Which, assuming they do become future leaders of Nigeria bodes very well.) Teachers were in room too and no-one made a fuss. No pics today cos def not touristing now, knackered in the way only physicality of impro and specifics of writing manage to bring together – also the way that teaching 16yo’s with only one break in hot hot room can do! Depressing conversation withWinnis about how she and friends don’t vote cos they KNOW it’s rigged and how different that is to people in UK thinking there’s ‘no point’ where at least, as she said, ‘Your vote is counted’. Much less touristy day, much more how it probably really is. No less enjoyable. Lit Fest evening to come, next workshop tomorrow, singing for my supper (lunch actually, egusi made with stockfish). And yam. Obv.

Wednesday 2am update (with 9am ‘address’ from First Lady of Ogun State to come, tra la la), anyway … Had brilliant conversation with Tayo Aluko re his Paul Robeson solo show/solo shows generally/making work, and saw Tunde Kelani’s film-play adaptation of The Government Inspector. It’s great (could be shorter – it’s a play, couldn’t they all?!) the play-film experiment worked and it also didn’t work for me (filmed play, 4 cameras, no audience, actors acting – brilliantly given it’s farce & no audience – as live), but I love the guts in trying it (and he’s not a young man and very successful and respected, such a great role model for working differently when established, not doing the same old, hugely impressive), trying a thing that ISN’T film, and consciously is play-on-film. Second half absolutely took off. TRSE should do his adaptation. Really. (I’ll edit.) Tomorrow another workshop, more of festival, then back to Lagos. Also – the DRIVING HERE!! I have totally stopped looking anywhere but out the non-road side of the car. And yet … ppp/ttt/touch wood … haven’t seen one accident. Maybe we need to start beeping from behind, rather than indicating from in front? (Serious question.) Night all. I fear I may not be my First Lady best in five hours …

Wednesday evening : After the constant bustle and difference, alone in a perfectly nice, perfectly anonymous, hotel room in Lagos. Five hours sleep, an address by the state governor (or was he the senator?) and shaking hands with the Cultural Minister (stunningest, dimple-smiled, warmest-seeming, poss one of the most beautiful women I’ve even seen), then a three-hour no-break impro-writing masterclass with four fantastically willing students (one of whom, an English lit teacher, is going to take it all back to the kids he teaches – brilliant), explaining the Snow White/Jesus/Mohammed (Hero’s Journey) story form, ably assisted by one of the four, who got all enthused by the Hero’s Journey (as form, NOT plotting method!) and before I’d even got to that bi, she pointed out that Moses is a Hero’s Journey too. Always useful to have biblically-versed students when explaining Hero! All of them totally up for impro and for writing, all of them giving up paid work to be there, all of them SO passionate about writing. Because there had been no time in the morning, I ate sweet white bread and eggy-spicy thing for breakfast during workshop. Yum. I like the eggy-spicy dish. Caught up with some more writers and artists over lunch, German doc maker to follow French doc maker from last night, met lots more arriving now as I have to leave (Totleigh Barton for my Arvon workshop on Monday),

the masterclass

the masterclass

and then a long traffic-y drive back to Lagos. Where I saw the ‘city farm’ below beneath a road bridge. Don’t quite know what to do with myself in the relative quiet (though there are beeping cars/bikes outside, obv), but a swim for a start … It’s positively chilly in Lagos at 28 degrees …)

city farm

city farm

later on Wednesday night : I am eating fish soup (mmm, fresh) in Lagos, alone in a hotel restaurant (I was 27 before I ever stayed in a hotel, and that was for work), with a nice glass of wine, a good book (Americanah, obv!), and a view of a soft pool. I wish my mum was alive to ring her and tell her about my adventure. Feeling deeply grateful.

And that was it. All done and dusted in four days.
So, from the briefest of visits, my entree to Nigeria (and indeed to the whole of Africa), made me want lots more. I’d like to teach more teachers so they can take it to their students. I’d love to see more of the land and maybe have more time in Lagos. I’d like to go to a not-private school (schools) and see if there is anything I can offer with impro-for-writers that could be useful. I think sharing with teachers so they can share with students might be useful. I’d like to go back.

Enormously grateful to the British Council Literature Dept in the UK, the British Council Nigeria, the Ake Festival and the force of nature that is the brilliant Lola Shoneyin, who created and runs the festival.

Abeokuta, festival centre, Winnie from British Council Nigeria

Abeokuta, cultural centre, Winnie from Brit Council Nigeria

Posted by: stelladuffy | November 21, 2014

Reconstruction Revelation #2

It’s now a week on from this first Reconstruction Revelation blog being (slightly) edited and repeated in the Guardian’s CiF, where I know the comments section so often attracts anger and where I was still, stunned, to read so much anger directed at me – much of it telling me I am not grateful enough, others thinking it was rude to have brought it up in public rather than in the privacy of the consulting room – it’s possible they’re right about that, though ever-aware of the long queue of people waiting, bringing up a both personal and political discussion with a doctor I have only just met for the first time feels like a big ask.(Mind you, I also appreciate that many commentators are drawn by the headline – written by a sub, obviously, not the writer of the piece, and the one that have there is fairly incendiary.)

I am still surprised that many of the commentators appear to think cancer-related breast reconstruction is ONLY about looks, that they might think I chose to have a reconstruction in order to look a certain way. And while the anger directed at my piece was upsetting, it has helped me clarify something :

My reconstruction was NOT to do with what other people see. Not doctors, not surgeons, not people in the street, not the friends who have (kindly, since the first days after surgery, all said ‘it looks great’ (because clearly, they too think that’s why I did it), not even me, when I look in the mirror, or look down.

I had a reconstruction because I wanted to feel physically like ‘me’. I mean feel in a physical sense, not emotionally, having already had cancer once I knew I wouldn’t feel emotionally ok for a long long time. And that when – if – I did feel emotionally ok, it would be a new me who felt this. Disease, facing mortality, changes us. It has certainly changed me. I think it’s meant to.

I had an idea that a reconstruction would feel – physically – similar to my own breast. And it doesn’t. Not at all. This particular reconstruction, with a fairly large amount of fat necrosis, doesn’t. And I didn’t expect it to feel so very different (or to be painful, solid in places – the solid being something we think can be corrected by further surgery), and THAT is why it feels odd to have a doctor only want to look at my breast, that is why it is odd when they don’t ask how it FEELS, because I simply didn’t have a reconstruction to look ‘finished’ to other people. I had it hoping I would feel like me.

nb, I’ve seen three different doctors in the past few months, a new one at each appointment. The ones who did the original surgery ALWAYS asked about feel as well as looks. As I said in the original piece, these new ones have been younger, so my guess is they are being newly taught that look matters more than feel.

Anyway … Saying yes to the Guardian sharing it brought lots of great response from people who’ve had body-changing surgeries (due to illness, not cosmetic), and from several breast care groups, as well as individuals who said this was exactly how they also felt (emotionally and physically!). So hopefully it was worthwhile.

And it started an email dialogue with a cosmetic surgeon, Dr Marco Romeo from Madrid, which I share here, with his permission. I think he offers an interesting perspective and I’m glad to have had the conversation with him. I can’t quite picture myself addressing anyone as ‘hey kid’ (while fully dressed or bare-breasted) but I do rather like the image of myself as the kind of woman who might. Here’s the link too, to Marco’s blog.

Dear Stella,
I am a Plastic Surgeon, I read your article and I find your story relevant to me but it left me with some questions. Would you start an open or private discussion with me about that?
Kind regards,
Marco Romeo

Hi Marco,
I’m leaving London for Nigeria tomorrow for a week, back briefly before a week working in rural Devon, neither place I’m going to has great Internet reception but I’ll get back to you as soon as I can.
I do hope you read my own, longer blog, rather than the edited Guardian version. My main concern is that it appears the younger doctors (none yet consultants) have obviously been trained that symmetry/shape are of premier importance, whereas the older professionals and consultants are interested in what I feel (physically) – so there appears to be a disconnect between what the older ones and what the younger ones have been taught in how to deal with patients’ concerns.
I’m on my second breast cancer, I don’t expect miracles, or to be entirely pain-free, but it is odd that the younger drs are approaching it very differently, and (in my opinion) less generously, than the slightly older ones.
Best wishes,
Stella Duffy

Dear Stella,
thank you for your reply, I really appreciate it especially because you seem very busy. With your reply you perfectly explained the point, I understand your concerns and I may try to explain them later in this email. Unfortunately, the message that comes from your article (not sure if is the Guardian edited or not) it seems that young male doctors may let you feel uncomfortable for a cold approach and probably the difference of age and sex may have worsen the situation.
I understand that empathy and “having the touch” is something very personal, difficult to teach in our career, young doctors live the the “anxiety” of getting more and more knowledge, they feel the rush to express perfectly their technical skills and they are not probably ready to handle with warm approach at the same time, most of them will learn, some not. I worked in the UK, I know my colleagues over there, great professionals, maybe just colder sometimes. I do breast reconstruction myself in Madrid, for a coincidence I correspond to the young male profile you cited. We are in a clinic with many young professionals and I dare to say that our patients love us (most of them at least!) because we received a thorough ethical and emphatic education. Whether there is a different approach between of the two countries is not the core of this letter, anyway.
My concern, is that what we felt reading the article is that all the good and difficult part behind reconstruction process is vanished for a young and quick doctor that made you feel uncomfortable.
I also thought that sometimes there is lack of communication or misunderstanding.
A nice message to give, that would be useful for both us surgeons and the patients is to speak to your doctor, something like: Hey kid, you must be a good doctor but here is a real woman in front of you, treat me as you’d like your sister or mother to be treated. Sometimes speak just as straight, lower any barrier and bring us back from medicine planet down to earth.
I read some of the comments in your blog, some women reacted just as bad as I feared.
don’t underestimate the power of a blog, when we suggest to lift up the other breast we don’t wish to say: you old woman! We try to give symmetry and harmony to allow you to wear a nice bikini in the beach and smile, again.
Thank you for your time,
Best wishes,
Marco Romeo

Posted by: stelladuffy | November 12, 2014

reconstruction revelation

So, I’m really tired, every day this week I am working all day and working or attending events every night … I’m really sleepy and I can’t sleep. I can’t sleep until I’ve written this.

It goes like this …

Dear nice, young (usually), male (usually), breast cancer reconstruction surgeon,

I don’t care what you can SEE, I care what I can FEEL. When I am dressed, when I am up and about, when I am getting on with my life, the size and shape of my breast really isn’t a big deal. I’m a woman, in my middle age, I have body issues, it’s normal for me. I’m not delighted with my body, but I have made my accommodations and actually, I’m kind of ok with it all. I was kind of ok with having about 2/3 of a breast after my first cancer.  I made it ok.

What I’m not ok with is the pain of the reconstruction, but I know I will learn to live with that, it’s only 9 months, the pain of the first surgery took years to get used to.

What I’m not ok with, is you making it all about how my breast LOOKS. (The breast made from a chunk of my stomach, the breast that took weeks to heal, that breast that was an open wound for ten weeks because of the previous radiotherapy – we think.) I wanted a reconstruction for a whole bunch of complex reasons, not all of which I fully understand myself (yet, I hope to one day) but I really didn’t want it JUST because of how it looks.

When you ask me to stand in front of you, both breasts bared, and compare my ‘new’ breast to my ‘old’ breast and ask if I want the old one re-shaped, you are insulting me. You are insulting the part of me that has, brilliantly, not had cancer. I quite like the bit that’s not had cancer. No, I don’t want it also cut up. (I try to love the bit that has had cancer too, I figure that’s more sane. It’s tricky, but I try.)

When you, fully dressed, ask me to stand in front of you, WHILE YOU SIT DOWN (to be at eye level with my breasts, I presume, no-one’s explained it, it’s what the young doctors are doing now – not the older ones, so SOMEONE has told them to, and recently), what you do is subject me to a male gaze where I am a semi-naked woman in my 50s and you, a young man in your late 20s or maybe 30s, are JUDGING the shape of my breasts.

But the thing is, and the reason I can’t sleep, is that I don’t judge the SHAPE of my breasts all day. From where my eyes are, I can’t see the shape. That’s what it’s like to be a woman, we can’t see the full shape of our breasts other than from above. It’s where our eyes are. (They’re in the right place!) But when I come to bed, I can feel them. When I lie down, I can feel the weight of the bits that have been a bit screwed up with fat necrosis. I can feel where the heavy, solid chunks of new breast-from-stomach drag. I can feel the bit I would like ‘fixed’. And it has nothing to do with looks, BECAUSE I AM NOT LOOKING AT MY BREAST.  It has to do with feel. It has to do with what it feels like. And I don’t so much care if it’s lopsided or not even, I’d quite like some soft back. And when you sit and stare at my breasts – as someone has clearly (in the 14 years since my first breast cancer surgery, because it’s different) taught you to do, you make me feel exposed, shy, worried, uncertain, and no amount of my grown-up-woman’s bravado (and I do have it, I do act it) makes me feel better about how it feels to be stared at by you.

I do not care what YOU SEE. I care what I FEEL.

Those two things are very different. Someone is teaching you wrong. It has changed in the past 14 years. What I FEEL matters more than what YOU SEE.

You are polite, and kind, and helpful. And I am grateful for that. But someone has taught you that it’s ok, to put what you see ahead of what I feel. It’s not. It’s MY body, and your gaze is not the arbiter of my body.

I hope you read this. You have all been very kind and helpful and I’m not dying of a recurrence, as far as I know. These are great things. Great*. And in the bigger scheme of life-and-death, how you look at me doesn’t matter so much. Except that how you look at me makes me feel judged and uncertain and unsure. And I’m a grown-up woman who mostly sorted that shit YEARS AGO. So while I’m staying alive and you are making your living making that work out for me, please understand, that what I FEEL matters more than what YOU SEE. I’m not quite sure why I haven’t been able to say this face to face, other than that cancer (again) has disabled me a degree (again), and I’m always so grateful and feeling so lucky to be alive that I’m not very good at saying what I want. And you’re dressed and I’m not, so it always feels a bit odd …

I can sleep now. I worked it out. It’s rubbish to have my physical feelings negated by someone (younger, male) telling me that the shape of the breast, that is hard and chunky, LOOKS GOOD – because it’s my breast and I care about how it feels.

(Other reconstruction women – it won’t happen to all of you, fat necrosis is a thing, it happens with some reconstructions, it happened to me, it might be because of the radiotherapy I had 14 years ago, or not, or other stuff. It happened. It won’t necessarily happen to you. You won’t necessarily feel as I do. This is my blog, I write it for me and for people who MIGHT feel as I do.)

* and when all the people who’ve never had to worry about staying alive are equally grateful, I expect we’ll have the most astonishing society. Until then, I’m fine with people who have had to worry about staying alive being a bit grumpy about it every now and then. None of us can constantly do “lucky me”, nor should we have to.

ps – there’s an update/follow-on piece & dialogue with a plastic surgeon here

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