How way leads on to way

Sue wrote this talk to give to the girls of Bromley High School in June 2013, when she was invited to their graduation as guest speaker.  Better than anything else it gives an outline of her career and part outline of her wider life and her words are far better than anyone else’s on this subject.  Alastair

 

How way leads on to way

 

GDST roots

 I am delighted to be here as a GDST old girl having spent the years 5-18 at Bromley High School.

 I remember at the stage you are that Edna Healy (wife of Dennis Healy – Labour Chancellor of the Exchequer) came to prize giving and gave a talk that I’ve always remembered. In it she said that we should not expect life to be straightforward and that there would be things to factor in like looking after elderly parents.  At the time I was rather bemused by this as we really felt we had the world at our fingertips and there was nothing that we couldn’t do and no one was going to stop us, but as I have gone through life it has made more sense.  I think that what she was talking about was the unpredictability of life and the need to adapt ones plans and ones aspirations.

Some of you may have a very clear idea of who and what you want to be, and exactly what path you’ll have to take in order to achieve that. Others won’t have a clue.  But I’d like to suggest that even those who think they know exactly what path they are on, may well have to take a very roundabout route to get to the destination they think they want to get to.  Also some of you will find that that destination is actually not a destination, but just a stop on the way, somewhere quite different, but equally interesting.

Some of you may know the Robert Frost poem – The Road Not Taken.  In it he talks about “How way leads on to way.” What I’m going to do today is use myself as a case study and  talk to you about the very roundabout route I took to several of the key destinations I reached.  Destinations I didn’t even know I wanted to reach until I got there.

I don’t think I could have planned out my life and career or predicted half the things I have done,  though, looking back, the ways that led on to other ways have had a kind of strange logic.

 

Medicine

I came from 4 generations of doctors and surgeons and remember at some point in my childhood when not wanting to be a vet, own a kennel, or marry Donny Osmond  that  I might like to do that too.  The fact that I had absolutely no aptitude for science and managed in my very academic school to get a U for maths O level soon put paid to that.

 

English Literature and Drama

My great love at school was for English and –outside school– was for drama.  I applied to study English Literature at Durham but then, on a whim, decided to have a gap year and  I applied for an English Speaking Union scholarship to the USA and, because of my interest in drama, was sent to a school of performing arts just outside Boston. This had a down side as it was full of dancers with issues about food and being at boarding school was restrictive but it did have two really good things about it, doing drama and suddenly being seen as incredibly academic!

 

Working abroad

At Durham I did a lot of drama  and  in many ways would have loved to have gone on with that and done something in the theatre but I was drawn to living and working abroad and doing some kind of voluntary work.  I was not sure where that came from though both my parents were immigrants and both had “socially useful” jobs.  I had been born in Turkey because my father was invited back to work in the children’s hospital that his own father had set up after having fled from Nazi Germany in 1936.  My own planning was a bit haphazard.  A friend’s brother had worked for a Buddhist organisation in Sri Lanka in his gap year so I did a TEFL course and just went there.  When I arrived I discovered that I needed a visa and more money. One day I passed a language school which had just opened  and ended up  working  there for a year. 

After that year I wanted to stay and the Colombo International School wanted a pantomime so I got a job and they got my version of Cinderella (I was the wicked stepmother), Aladdin and Dick Whittington.  For the rest of the time I involved myself with the women’s movement and got to know people in the aid and development business.  I wrote for Voice of Women and did some editing.  This led me, on return, to do an MA in Women’s Studies at Kent University one day a week.  I never finished it but I made, as I have in all parts of my life, some lifelong friends.

 

VSO

Also on return to England I wrote to an NGO,  ITDG, and was asked to come in and see them.  They gave me a voluntary job as editorial assistant on a book and, after a year, they found me bits of paid work.  During this I went on a CND march and someone mentioned they’d heard a job at VSO coming up as technical development officer.  I persuaded them that I had enough experience from Sri Lanka to recruit technical volunteers, such as plumbers and electricians, and train them to go and work overseas.  This gave me the opportunity for trips to various countries including Indonesia, Nigeria, Bangladesh and Nepal. 

 After 3 years I applied for a temporary post in Bhutan for 3 months where I had to have the  ability to hit the floor running  being left in Calcutta with the instructions drive until you see the Coca Cola sign,  turn left and leave India.  On return I applied to work more permanently overseas and was, for three and a half years the VSO Programme Manager in The Gambia even though I hadn’t known where it was on the map. I arrived 2 weeks before a new batch of volunteers and had to be ready to receive and train them before posting them to various locations in a country which I did not yet know.   It was a wonderful job in which I could spend the day with subsistence farmers and the evening at some British High Commission event.  During this time I picked up a husband, who came to join me for my final six months.

 

Overseas Training Programme

When I came back to England again part of the resettlement package was a few months work and I was asked to do research for a new programme to send university undergraduates out to be trainees on development projects.  I presented this a week before my daughter was born.  I then went on maternity leave with no plans but was offered opportunity to set the scheme and to do this, part time, from home in Brighton.  I did a 4 day week in 3 and my husband a 5 day week in 4 and we muddled along balancing childcare.  As the scheme grew, and so did my daughter who no longer wanted to share her bedroom with the desk and filing cabinet, I found an office down the road.  I did this for 7 years and loved working with young people in their early twenties.

 

During this time I had my second child, a son.

 

Bad choice

40 seemed a time to make a change after 14 years with VSO so I just stopped work with nothing set up to go to.  It was at this point that I made my one bad career choice and worked for a charity recruitment business the only benefit of which was realising that if one doesn’t enjoy going to work it really is not worth going to.  I resigned.

 

Medical Ethics

I heard of a job in the law school at King’s College London in the Centre of Medical Law and Ethics.  They wanted someone to organise training in research ethics and edit a text book. There were 2 weeks before the interview and I had never heard of research ethics but it is remarkable what one can learn in a short time.  I worked there for 7 years and  sat in on all the training that I organised.  This gave me enough knowledge and confidence to apply for a job as a lecturer in Clinical and Biomedical Ethics at Brighton and Sussex Medical School. I have been there for nearly 6 years.

 

Writing

At the time I left VSO , having always thought I wanted to write, I did a creative writing course and loved it.  This was followed by a post graduate diploma in dramatic writing and an MA in creative writing. While on the course I decided to see if I could write enough words to make a novel.  I wrote an opening chapter for an assignment and then just carried on.  The novel is based in a country not unlike The Gambia and some of it is based on my time there.  I didn’t think of publishing it.

 

Play writing

While at King’s a colleague commissioned a play based on reports of a user group in a hospice.  This was performed by a high profile cast including Gina McKee , Phyllida Law and Amanda Mealing of Holby City.  One of the actors asked if I’d consider doing it for radio and had a contact at BBC Scotland,  Bruce Young.  He gave excellent advice about turning it into radio but it didn’t get commissioned.  He asked if I had anything else in a drawer and I actually did – Kaffir Lilies based in Colonial Nigeria.  I improved this with his advice and it got through the commissioning round and was performed on Radio 4.  That first recording was the nearest I’ve come to heaven. It was followed by Laura and Old School Ties.

 

Novel

My novel continued to languish in a desk drawer but then I met the boss of an independent publisher at a birthday party and she asked to see it as she was looking for fiction to publish.  It was published in April 2009 with a book launch at the medical school.  I derived huge pleasure from this and it included doing talks, going to book groups and judging writing competitions.  The editor and publisher were both GDST girls!

 I gave a copy to my radio producer and he suggested adapting it for the Woman’s Hour drama.  I did this and it was broadcast in March 2010.

 I then went on to write a second novel, Interpreters, and it was published in September 2011.

 

DPhil

This second novel formed an important part of a part-time PhD in creative writing which I finished in late 2011 and was awarded in early 2012 making me end up as the doctor I once thought I’d wanted to be.

 

Complications

No one’s life is straightforward.  I had had years of problems with my left foot starting with an operation in 1986 and several more in 1993 and from 2005.  During the recording of Cloths of Heaven a bone scan showed a tumour higher up the leg and, at the same time, my husband was sacked.

 

In April 2010 I had the leg amputated below the knee.  This was not great but at least Alastair was at home. The tumour was found to have recurred in 2011 and in June of that year I had an above-knee amputation.

 

I had never known what a blog was before this point but I started writing one and ended up with quite a following.  I was also commissioned to write a piece for The Guardian.  Sales of my books went up a bit and then there was a new commission on health blogs.

 

I have almost come full circle.  I use love of literature and story telling in my teaching of ethics.  I also use film, poetry and literature in modules on mental health in Bedlam and Beyond and heart, lungs and blood in Bleeding Hearts and Fevered Lungs.

 

So I wish you all the very best on your paths through life-  I urge you to be creative, take career risks, not be afraid to do things that you are not sure you can do.  Above all, do whatever you can to earn your living doing so

 

Sue’s final voyage

Dear friends,

Some people may not have heard that Sue died on the 10^th of November. Her funeral will be at St George’s Church  (St. George’s Road) in Kemptown at 3pm on Thursday 21^st November followed by a celebration at the Hilton Metropole Brighton for food and drinks to which you are warmly invited and strongly encouraged to attend.

Dress however you feel comfortable, we will not be wearing black.

No flowers or wreaths please, donations to the Martlets Hospice and Sussex Rehabilitation Centre in Sue’s name.

We kindly urge you to bring a photo/s of Sue and memories, handwritten or typed, which will be stuck into a memorial book for Alastair, Seb and Anna to keep. The book is 7 x 5 inches and will be available for people to contribute to at the wake.

Parking will be very difficult in Kemptown, so we encourage you to use public transport. There is a car park in the Hilton with about 150 spaces and you can park there all day for £5, just validate your ticket at the hotel reception.

For people who are unable to walk to the Hilton (about 25 mins walk along seafront) there will be a shuttle bus service from the church to the Hilton.

Thank you,

Alastair, Anna and Sebastian Burtt

Maps and Information

St George’s Church: http://www.stgeorgesbrighton.org/

The Hilton Metropole: http://www3.hilton.com/en/hotels/united-kingdom/hilton-brighton-metropole-hotel-BSHMETW/index.html

Martlets Hospice: http://www.themartlets.org.uk/

Sussex Rehabilitation Centre: http://www.sussexcommunity.nhs.uk/services/servicedetails.htm?directoryID=16332

If you have a problem of any sort on the day, a few friends will have their mobiles on them.

 

 

The third, but hopefully not final adventure.

There has been yet a third adventure following a night in East Grinstead with Anna in August and the (not The Train Spotting) trip. Anna and I had fun, but it was definitely a pecuniary rip off demanding massive strength and determination in the face of appalling disabled access. I was hugely fortunate to have been allocated a bed at the Martlets Hospice in Hove the day I returned from Scotland—without which I don’t think I would have had the courage or energy to do that or the third adventure, which was to fly to NYC and take the Queen Mary 2 to Southampton with Anna, Seb and Nurse J. The timing wasn’t perfect but hey, what’s a bit of half term between teachers?

As a reasonably broad-minded person, there are few things I can categorically say I would never do. One of them is going bungee jumping, another is getting my tongue pierced and the third is going on a cruise. Yet there I was, feeling the wind whistle through the hole in my tongue as I leant from the gunwale of the Queen Mary 2 dressed in a golden Dior evening gown, safe in the arms of Leonardo and to cap it all, I had one of the most fantastic trips of my life. OK the first two parts are lies but this really was the most poignant, meaningful and joyous holiday that I can remember.

 

On my return to the hospice, I have realized more and more that there is something very bizarre in becoming a character in your own play. Nearly ten years ago I was commissioned to write a play called The Tuesday Group, based on the words of a group of people with life limiting illnesses at a hospice day centre. At the time there felt something slightly wrong in writing words such as these. But as each amputation followed on each amputation and the pain gradually increased, I couldn’t help feeling that life was beginning to imitate art in ways that were just a little too spooky.  My hands appear to have lost connection with my brain and I can’t help but wish I could reverse the update on my iPhone as it has suddenly become too complicated to navigate. Now, I can only actually write anything at all if Matron Anna puts aside her dissertation and scribes for me.

 

 

The Night Train

In my mind, my brothers and trains are inextricably linked. As very small children, our favourite game was Night Train which consisted of bundling Mike into a laundry box while Phil and I would push it up and down the landing from London to Scotland. I reckon I was a pretty accomplished guard. I am less proud of myself as an appallingly sulky, foul-mouthed  twelve-year-old, traipsing round Crewe Works a few yards behind them, muttering that their interest in trains and train-spotting was completely and utterly moronic.

So when we started planning a siblings break, trains had to feature. The problem with planning now is that the speed of deterioration in mobility and increase in pain is difficult to predict. Undeterred, we took the first class day train to Inverness which gave us the luxury of spending time with each other. But by the time we arrived, neither of my legs could really remember how to move. The three steps up into the Cullodden House Hotel annexe, which I had assured the manager would be no problem, were very definitely a problem. But instead of whistling through his teeth and shaking his head sadly, the manager summoned a colleague and together they carried me in my wheelchair into my room and later up another eight stairs to the dining room without even breaking into a sweat. What could have been a disaster turned into a hugely pleasant break. The sun shone the whole time.  As a surprise,  Phil had brought a box of ancient slides and a viewer and there, amongst the 200 slides, was tiny Mike curled up in the box. Now, half a century  later, very definitely promoted to tour leader. As we toasted our successful trip in the bar of the sleeper I felt  hugely blessed to have such wonderful brothers.  I’ve seen Anna and Seb grow to value each other over recent weeks and it makes me happier than almost anything else.

 

The truth behind morphine

Photo courtesy Sian James

 

Raccoon husbandry

Morphine is taking me all over the place. If I shut my eyes, particularly after a long day, I disappear into parallel universe.  Recently I spent what seemed like hours and hours trying to persuade Seb that, really, the best way to transport a group of baby raccoons out of the woods was to get a washing machine and put them in the drum.  Only to open my eyes and wail to a bemused Matron A that there was no way raccoons would like to be transported in a washing machine.  And she thought we were watching The Great British Bake Off.

 

Over to Dickens

“It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us …”

Dickens says it all here: In many ways, this is very definitely the best of times. I have had extraordinary conversations with friends and family. I have had the opportunity to tell people how much I love them and have had the honour of being told, or shown by actions and generosity, how much I am loved. I have spent hours with Matron A, telling her things about my life that she may never have heard had we not made the time to just be together. I spend my days doing things that have meaning or bring me pleasure. But in many ways this really is the worst of times. The word incredulity resonates with me. I just can’t believe that my life is to be cut short at the very time I am happiest at work and at home – when there is so much left to do. I can’t believe that I won’t be around to see Sebastian continue to develop into the loveliest and funniest young man I know. I can’t believe I’ll never know what Anna decides to do with her life; if she’ll ever have a child. My darkest moments are brief but intense. I am enraged by the knowledge that all the amputations and months of wound care and rehabilitation have essentially been for nothing. Mostly, I rail against the knowledge that Nurse J and I won’t spend our retirement as we’d imagined, pootling about the country with Alfie or his successor, sitting in cafes or bars, just chattering and watching the world go by.

 

“Is there anything at all I can do?”

I can now see why people draw up wish-lists in John Lewis or Harrods before sending out wedding invitations.  I have been deeply touched by the offers of help from friends and colleagues on receiving my news. But it is hard to know what is really meant by “Is there anything at all I can do?” and even harder to know what to suggest. At the beginning, I found myself resorting to the absurd: “Well, the front path needs re-laying” or “You could find a very quick cure for this particular cancer”, perhaps out of embarrassment or dismay at finding myself in a situation where I need help.  The equivalent of a John Lewis dinner service or a set of crystal wine glasses from Harrods has been Manel, on an overnight visit, getting up early, going shopping, and making meals for the freezer for days when Nurse J and Matron A are too exhausted to cook; or Bobbie just being there (with marzipan chocolate) at my bleakest moments; or a group of our neighbours inviting us round for coffee and cake and setting up an easily activated e-mail list; or American visitor, Ann, taking the saw and secateurs to the back garden; or Sian in Scotland sending lovely long  letters; or Jane taking me to medical appointments when I’m too jittery to drive; or Cigdem sourcing raised loo-seats; or Kate doing preliminary coffin research or Candida lending me the perfect black dress. And for all this help and the very many other offers, I am hugely grateful.

 

A bit of a bugger

So the attack of sciatica that made sight-seeing in Rome a little tricky turned out not to be sciatica at all but pain resulting from a lesion.  A lesion caused by the spread of the giant cell tumour that isn’t meant to spread anywhere, let alone to the pelvis of my so-called “good” side.  And which didn’t show up in the last scan. Nurse Jackie and I received the news in rather stunned silence. I asked a few questions in a voice that seemed to be coming from a very, very long way away; mainly whether there were any treatment options (unfortunately, no) and whether I’d be around to help Seb with his UCAS form for nursing, and get to Matron Anna’s graduation next July (hopefully, yes).

 

Nurse Jackie – undeterred

 

Keeping Nurse Jackie in shape

The dropped curb was clearly not a priority for the Roman or Renaissance civil engineer. But I have a feeling that Nurse Jackie (whose body is now a temple) is secretly relieved that he is able to keep to his fitness regime as he hauls the wheelchair up steep steps and out of tram tracks and gaps in the cobbles as we make our way by train to Sardinia. A badly timed flare-up of sciatica, which has made walking almost impossible, has meant I am very definitely getting my money’s worth out of our newly acquired travel wheelchair, originally intended just for the long walks at railway stations. There has been the odd very cross word (mine) as Nurse J boldly pushes me across pedestrian crossings at which drivers clearly consider it cissy to stop. And the odd yelp of pain from people foolish enough to change course or stop suddenly in front of us. But apart from that, we are having fun; doing a bit of sight-seeing, sitting reading in cafes and drinking beer at lunchtime. Tomorrow morning it’s the two-foot drop from the platform and the traverse across several sets of railway tracks to get to our train to Cagliari. Nurse J is putting on a brave face. As am I

 

Prosthesis as bathroom accessory

 

Early summer planting

 

Thank you for voting

To those of you who very kindly voted for Interpreters for the People’s Book Prize despite the hugely complicated voting procedure (I lied when I said it was pretty straightforward) THANK YOU VERY MUCH.  It won!  I am delighted and very grateful for all your support and the very many lovely comments I’ve received since winning. 

So now it’s back to life in Amputee World where I’ve regressed to hopping around on one leg as I await a new socket. But on the plus side, I’ve sourced some very cheering Lycra (which oddly matches our loo seat) for the obliging prosthetic technicians to do their magic with.  Watch this space…

 

 

 

Failed subliminal advertising

I have been trying to think of ways to write a pithy blog post that would somehow flow seamlessly from a meditation on the vagaries of life in Amputee World to a shameless plea for a vote for Interpreters for the final stage of the People’s Book Prize which would be so subtle that readers would just click the cross by my name on http://www.peoplesbookprize.com/finalist.php without even noticing I’d asked.  But I have failed.  So, if you enjoyed Interpreters http://www.myriadeditions.com/interpreters and would also like to make my day, please vote.

 

Homage to Breaking Bad

My new socket – thanks to fabric from Brighton’s wonderful Get Cutie (http://www.getcutie.co.uk/home/index.html),  the technical wizardry of prosthetic technician Andy Nash and far too many hours in the company of Seb, Walter White and Jesse Pinkman.

 

Recuperation

This recent setback hasn’t been an entirely negative experience. I had the pleasure of watching the plastic surgeon and his team remove skin from my thigh and sew it onto my ankle as the theme from Chariots of Fire resounded from the operating theatre iPod – the irony of which appeared to completely pass them by. I managed to read a novel a day during my stay in a spotlessly clean hospital where I was cared for by nurses who couldn’t have been kinder or more helpful. Having to sit with my leg up for two weeks on my return home has been the perfect excuse to bring myself up to date with Breaking Bad, The New Normal, Glee and Nashville. Nurse J, on the other hand, is rather reeling from his refresher course in total home care (with advanced manual handling) and the challenge of managing a patient who has found the temporary transition from two legs to none more than a little irritating.

 

Weebles wobble…

Seb wonders whether, in a previous life, I killed Gandhi. If not,  why would a little mole on my (remaining) ankle have turned out to be a melanoma? And because it requires further excision and  there’s hardly any skin covering the ankle,  it’ll need a skin graft from my thigh. And because I’ll have to keep weight off my leg until it’s healed, and hopping on a prosthetic leg really isn’t an option, I’ll essentially be bed-ridden all over the Easter holidays. Which was not the plan at all.  It doesn’t seem fair, he notes, because if it had been on my other ankle,  I’d  have nothing to worry about as it would have long since been incinerated with the rest of the leg. And I guess he has a point.

 

Seven days in Stumptown

 

The taxi drivers, cocktail waiters and purveyors of brunch in Portland, Oregon (whose nickname is, very pleasingly, Stumptown) will have noticed a steep decline in profits since my return from a wonderful week visiting Anna. I had a good feeling about the trip as I was wheeled straight to the front of a queue of several hundred people who had clearly been waiting for a very long time at immigration.  The wonderful Riverplace Hotel lent me a wheelchair and Anna – the most generous, funny and thoughtful of hosts – gave me guided tours of the city, her neighbourhood, college and favourite haunts; I took the train to Seattle and spent a lovely day with an old school friend; I spent hours browsing in Powell’s City of Books and sitting watching the people of Portland going about their business, many of whom were doing their best to “keep Portland weird”.  Complete strangers were extraordinarily kind.  One shop assistant, realising I was burdened by a complete lack of any sense of direction, heavy bags of clothes for the now very slim Nurse J, and a prosthetic leg, escorted me all the way to the correct exit of the shop, carrying my bags and chatting about the delights of the city.  And I didn’t fall over once.

 

Dr Frankenstein, I presume?

Although at times a strange hybrid of Gareth Malone meets the Hairy Bikers set against a menacing Hammer Horror soundtrack, there was quite a lot in the recent Channel 4 documentary How to Build a Bionic Man that interested me.   I understood what Dr Bertolt Meyer meant about the creepiness of almost- human-looking prosthetics, his distress at the rather sweet beardy roboticists’ inability to comprehend the complex feelings the robot evoked in him and his fear that he’d be shown an incredible artificial limb that he would really want but would not be able to get.  (I used to have prosthetic knee envy but now I really, really want one of Hugh Herr’s bionic ankles NOW).  Amongst all the technical and surgical wizardry, the bigger ethical issues were only briefly touched upon.  George Annas, Professor of Bioethics and Human Rights at Boston University asked whether, given the astronomical cost of the research and production of these advanced prosthetics and artificial organs, it was right that only the very rich would ever benefit from them, but also whether it would be ethical to stop the development until it was figured out how to make an equal society where everyone would benefit from the advances?  Compared to the prosthetics showcased in the programme, the first generation microprocessor controlled knee that I’ve been unsuccessfully asking to at least try, is about as sophisticated as the wooden leg that Josiah Wedgwood had his cabinet-maker knock up for him in 1764.  But it still remains tantalisingly out of reach of all but a tiny minority of amputees. While the cutting edge research continues, wouldn’t it be good if there was some commitment by the prosthetics companies and the NHS to change this?  Come on – if Gareth Malone can get the Military Wives to number one…

http://www.channel4.com/programmes/how-to-build-a-bionic-man/4od

 

The year of tactical thinking

I feel I should have more to say about 2012 than that it was most notable for being a year in which I didn’t have a portion of leg amputated.  Logically this trauma-free year should have been the one in which I started writing a new novel or play but it’s been a year of acclimatisation, adjustment and reluctant acceptance with none of the adrenaline rushes or surges of creativity that punctuated the previous two in which the surgeon’s saw played a more significant role.  Any free space in my head seems to have been taken up with resisting fearfulness and despondency and trying to reclaim a sense of spontaneity. On a practical level, I’ve had to identify a couple more hours in each day to accommodate getting the leg on (which can take anything between 20 seconds and half an hour depending on nothing in particular) and getting from A to B at a fraction of the speed I used to move. I feel a bit like a train much of the time; it only takes a bit of ice or some wet leaves to make me grind to a halt.  The desire to retreat into a sedentary, solitary, life free from the fear of falling or having to explain to people why walking is so difficult and that, yes, this is probably as good as it’ll get, is sometimes overwhelmingly attractive. But I am determined to pull myself together in 2013.  I’ve lent my box set of Friday Night Lights to one of my brothers, knowing that if it remained in the house I would succumb to a third viewing and never write anything ever again.  I’ve booked a flight to the USA to spend a week with Anna, exploring Portland, Oregon. I’ve arranged several theatre trips even though I know I’ll spend the journey to and from London worrying about how I’ll navigate the space between the platform and the Virgin Train. But then Nurse Jackie has set the bar pretty high in the getting a grip stakes.  When, in a bleak moment, I told him he’d better outlive me as life on my own would just be far too hard work, he didn’t just roll his eyes, but promptly lost three stone in weight and started swimming.  And if that’s not love…

 

A moan about Rust and Bone

If I could go back in time I’d very definitely opt for CGI rather than surgery for my amputation. The outcome is far superior:  no post-surgical swelling, messy wounds or irritating phantom limb sensation. With CGI you get beautifully toned, tanned, symmetrical stumps with no scarring, cellulite, weals or bits of sticking plaster residue on them.  You don’t have to endure months of tedious, painful, exercise and walking practise but instead get to stride out in public a mere two days after picking up your perfectly-fitting hi-tech legs.  I share my fellow amputee, Stuart Holt’s irritation at the physical inaccuracies http://www.guardian.co.uk/culture/2012/nov/11/rust-and-bone-review – surely directorial laziness.

There was a lot I liked about Rust and Bone http://www.sonyclassics.com/rustandbone/ but I was disappointed that a real opportunity to bring amputation into the mainstream was missed. Of course the film wasn’t about amputation and Marion Cotillard played a complex role in a way that few other actors could, but why, for example, is it assumed that an audience will cope with Matthias Schoenaerts’s pulverised face but not with how Marion Cotillard’s post-amputation body would really look and feel? I came away from the film with three thoughts:  1. Disability casting seems to be a muddle: is it unacceptable to have an actor made-up to play the part of someone with Down’s Syndrome but OK to put able-bodied actors in wheelchairs or digitally erase their limbs? 2.  Orca whales are best left in the wild and 3. Nurse J might like to consider boxing as a little earner.

 

Two steps forward…

I have been reading Oliver Sacks’ A Leg to Stand On and pondering the irony of him being able to see his leg while having no sense of it being there and me being able to feel every nerve and muscle in a leg which very definitely isn’t there.  Over the past few months my phantom limb sensations had been growing gradually less intrusive.  Then, two weeks ago, an HGV crashed into the back of my car as I braked to avoid an overtaking vehicle and now the sensations have returned with a vengeance. It is as though all the shock and anxiety and the sickening awareness of what could so easily have been the outcome of the accident, have concentrated in the nothingness that is my missing leg which is fizzing and burning away like a Roman candle. Since the crash, my brain has had a particularly strong sense of where my foot is which sadly bears little relation to reality, so every step has to be cautiously negotiated.  That, and the involuntary night spasms which jolt Nurse Jackie out of his dreams are keeping us both on our toes.  So to speak.

 

Make my day

Some good news: Interpreters has just been nominated for the People’s Book Prize. There is no big cash prize, so I won’t be hopping off to the Caribbean,  but winning it would undoubtedly help publicise the book and hopefully result in more foreign rights sales.

If you enjoyed Interpreters, and if you’d like to vote for it, that would be fabulous. (And if you recommended it to friends and relations, please do ask them to do the same.)

The process is reasonably simple though there are two stages as you have to register before you vote.  Fortunately the whole process takes less than 5 minutes. Just click on the link below:
http://www.peoplesbookprize.com/book.php?id=77

THANK YOU!

 

Pre-owned prosthetics as art

I found myself unable to stop smiling as I walked around this quirky exhibition just off Brick Lane. http://spareparts2012.com/

 

Bookalikes

I have to admit to feeling rather apprehensive when a friend texted me yesterday to ask if I’d seen Interpreters featured in Private Eye.  It was something of a relief to (eventually) find in the Bookalikes section (and not in Pseuds Corner, Street of Shame or The Sun Says) and also to know that my lovely cover by Anna Morrison http://annamorrison.com/ preceded the other novel (2^nd edition) by several months.

 

Legacy, schmegacy

I share the nation’s admiration of the extraordinary performances and achievements of the Paralympians. But I wonder whether, once the games are over, there will have been any significant long-term improvements for, or changes in attitude towards, people with disabilities. Here are a few things about which I would like some answers:

• Where are the ordinary disabled people doing ordinary things in the adverts that pepper the games?
• If manufacturers can develop prosthetic limbs that enable elite athletes to achieve sporting excellence, should they not also develop high-tech components affordable by the NHS so all amputees can reach their goal, even if that goal is taking the dog for a decent walk rather than breaking a sprinting world record?
• Will there really be a proliferation of properly-funded sporting activities for people with disabilities and a reduction in facilities where “disabled access” is a single shower seat?
• Will the concerns about the cuts to disability living allowance that have usefully been voiced by a number of Paralympians remain in the public’s consciousness after the Games? http://tinyurl.com/chg5vhn

And that is just for starters…

 

Road trip

A two-week, 2,400 mile road trip of the USA taking in Las Vegas, the Grand Canyon, the Hoover Dam, Tuba City, Zion National Park, Death Valley, Yosemite, San Francisco, the Oregon coast, Portland and Seattle proved to be the perfect amputee-friendly family holiday and no one need ever know that we hired, and very much enjoyed driving, what we normally refer to as a W*nk*r Car.   The USA’s commitment to disability access and awareness – at least everywhere we went – was extraordinary and made what could have been quite a demanding trip an absolute delight.  When the going got tough or, as Sebastian would put it, I was overcome by laziness, wheelchairs could be borrowed from every hotel and visitor centre.  I had the odd wistful moment when I remembered how easy it used to be to venture into the unknown without having to think about every step, but the paths and wooden walkways put acres of national park and even the Oregon dunes within my reach.  So now we’re home. It’s raining, we’re missing Anna and envying her new life in Portland and jet lag has transformed Nurse J into a quivering wreck.  If it weren’t for a massive credit card bill, some photos and Seb’s bargain Levis, I’d wonder if we’d been away at all.  But Alfie the Personal Pet as Therapy Dog is very relieved to have most of his pack back.

 

Going for gold

I have never had the slightest interest in sport but I’ve found the 2012 Olympics remarkably inspiring and strangely addictive. Though not in the same league as Jessica Ennis et al, I have had a small sporting triumph of my own and returned to swimming – something I didn’t think I’d have the courage or energy to do after the above-knee amputation. The impetus has been finding a council-run swimming pool with proper disabled access and a fully-equipped shower/ changing room in which I can leave my leg and other stuff while I plough up and down the pool like an ancient, long-retired and shamefully gone-to-seed Paralympian. My recently revived table tennis career has been less auspicious, largely because Sebastian (currently in the lead at 25 games to nil and despite his recent stint of work experience at the limb workshop) refuses to make any concessions to disability and will not give me a lead of three points which is all I’d need to thrash him.

 

A summer socket

I have been tempted to defy the logo police and go for an Olympic rings design but sun birds and hibiscus flowers have trumped.

 

Grand designs

A new use for an old socket

 

Wspaniała oferta wydania książki w Polsce

I feel ridiculously pleased that Polish language rights to Interpreters have been bought by Proszynski Media, a publishing company whose foreign fiction list includes some of my very favourite authors – John Irving, Virginia Woolf and Arthur Miller just for starters.  The day I received the news about the Polish deal, I was the guest of a small but scarily well-prepared book group (one of the members had read Interpreters three times). I was particularly interested that each person had a slightly different take on the novel’s characters and events.  So now I’m intrigued to know how the Polish translator and readers will interpret the events of a novel set partly in the London suburbs of the 1970s and partly in 1940s Germany – how their lives and histories will shape the way they read the book.

 

Aspirational thoughts

A year on from the second amputation and I feel about my prosthetic leg what I imagine I might feel about settling for a new partner after the death of a much-loved husband.  Every morning I wake up and, for a moment, I forget that it’s gone for good and that nothing will ever be quite as straightforward or quite as much fun. Sometimes I wonder why I’m bothering with a replacement, but it’s nice enough; it gets me out of the house.  If nothing else, it’s something to get me to the cinema or accompany me as I struggle through the woods with the dog.  It’s not really my type – not what I would have gone for under normal circumstances but, at my age and in my condition, it’s probably as good as I’ll get and I don’t want to offend the people who introduced us and who clearly think it’s quite a catch.  But I know that somewhere, tantalisingly way out of my league, is something unfeasibly alluring, smart and stylish which could whisk me away from a life of timidity and apprehension, take me striding out confidently into the future. But it’d come at an incredible cost and I wonder just how much it’s worth it.

 

Fame at last

You know you’ve made it as a novelist, playwright and academic when you idly check under search engine terms to see how people have found your blog, only to read:

middle-aged white woman with bob

 

Subliminal novel advertising

 

Here’s an extract from my novel The Cloths of Heaven (Myriad Editions 2009), in which cloth, particularly cloth featuring recurring Virgin Marys, the Pope, or Bob Marley, plays an important role…

Father Seamus woke to the sound of an injured animal howling outside the gates of the compound. He looked at his watch.  It was nearly four o’clock. He felt around for his dressing gown, a recent gift from Isabel.  It ranked high in his list of favourite possessions, depicting as it did, repeating patterns of orange weeping Virgin Marys.  By the time he had found his torch and sandals, the noise had stopped.

He stood on the steps of the house peering out into the darkness.  The animal, whatever it had been, must have crawled off to die in the bush.  But as he turned to go back into the house he noticed a small mound by the gate. Father Seamus was used to gifts being brought to the Mission.  He and Sister Mary Philomena often came home to find baskets of tomatoes and aubergines or paper twists of groundnuts by the gate but he could not recall there being anything left there the evening before. He walked to the gate. There was a smell of blood.  He frowned.  They normally only received meat at Id al-Fitr.  The priest knelt down and peeled away the layers of damp crimson cotton.

“Oh, Jesus Christ!” he whispered. “Jesus Christ!”  He gathered up the bundle, holding the broken body of Abdulai Jammeh tight to his chest.

 

Cover Dog

Alfie the Personal Pet as Therapy Dog is pleased to have made the front cover of Step Forward.

 

Is it more stressful being an author or an amputee?

Invited to talk about Interpreters at Jewish Book Week, I was answering some introductory questions about my first novel when, a few minutes into the interview, I became aware of a commotion in the audience. “What’s she doing talking about The Cloths of Heaven?” hissed an angry woman four rows from the front.  “I didn’t come here to hear about Africa!”  This was followed by much rustling of papers. “See!” she said, thrusting the programme under her neighbour’s nose, “she’s meant to be talking about another book entirely.”  In the event, that proved to be much less disconcerting than trying to take my leg off and put it on again at St Pancras station on the way home, with my ever obliging publisher shielding me from the commuters’ view with her coat.

 

A new book marketing ploy

Nurse Jackie, in his new role of Geography teacher, is particularly excited by the new wordpress stats page that now boasts a map of the world, colonising in bright orange any country from which someone has clicked onto this blog. I’m intrigued to see I have traffic from Iceland, Russia, Brazil and a host of other places I’ve only ever dreamt of visiting. What the stats also show are search engine terms and from time to time I’m rather taken aback by some of the words people have typed into Google – and also amused at how disappointed they must be to have ended up on this comparatively untitillating site. I’ve got wise to no longer using the st**p word, but somewhere in this blog (albeit in different entries) are the words bum, amputee and legless. So if you are someone who has ended up on this site by accident and were really looking for something completely different, do the right thing.  Buy a copy or two of Interpreters or The Cloths of Heaven. You know you want to.

 

Living dangerously

I have had some prosthetic leg-related incidents that have been unfortunate but not entirely unexpected. I’ve set off a couple of times without checking that my left foot is touching the ground and ended up on the floor.  I’ve trapped the leg under a restaurant table and dragged the table and chair with me towards the exit to the consternation of the other diners.  My blood pressure has soared dangerously in response to a friend telling me that she had just seen Heather Mills running along the seafront and “no one would even know she had only got one leg.” I’ve pulled a muscle in my neck while trying to tie my shoelaces.  What I had not anticipated was crushing my left index finger in the knee joint of my prosthesis. Now that did hurt.

 

Go Panthers!

Friday Night Lights is very probably the best thing I’ve ever seen on TV. It is way up there with The West Wing, The Singing Ringing Tree and that episode of Blue Peter in which John Noakes slipped in elephant poo. Until I get to the end of my five-series boxed set, there is very little chance of me writing anything more creative than an e-mail, and even then, my head and heart will probably remain in Dillon, Texas for a long time to come.  I love the series for its characters, story lines and soundtrack and for the fact that I care so much that I can almost be bothered to work out the rules of American Football.  Amongst a host of other issues, it dares to explore the subject of disability in a way that is refreshingly honest and uncomfortable. When quarterback Jason Street is injured in the very first episode, he remains paralysed and with limited use of his hands.  He does not become a paralympian, he is not miraculously cured by the love of a good woman or cutting edge stem-cell technology, his friends don’t all continue to rally round.  He does not become some kind of a-sexual, long-suffering shadow of his former self.  There are no fantasy dream sequences in which he suddenly leaps out of his wheelchair to lead the Panthers to victory.  And though that is Jason’s tragedy, we are all the richer for it.

 

Feel the fear and do it anyway

As far as feats of bravery go, walking onto a stage in front of a lot of people, shaking hands with Sanjeev Bhaskar and the Vice Chancellor and walking off again cannot really compete with other amputees’ conquering of wild places, alien environments and inner demons. I had spent the weeks preceding the ceremony feeling sick with dread every time I imagined myself catching my stick in the sleeve of my gown or stumbling over my foot and having to be hauled up from the floor by a flustered academic. So as I made my way back to my seat having avoided trip hazards and public humiliation, this felt as significant an achievement as the actual doctorate I had been awarded. So now for the foothills of the Himalayas then Britain’s Got Talent. Not.

 

Too much information

Having had the amputations almost exactly a year apart, I find it very hard to remember what happened which year and who knows what. We’ve received Christmas cards from people who don’t know I’m missing any body-part, people who think I’m still recovering from the below-knee amputation and one or two from those who are hedging their bets by addressing the card to “Alastair and family”. Just before Christmas I ventured into a clothes shop I’ve frequented over the past few years. An assistant I thought I recognised greeted me with, “Happy Christmas! How are things now?” I watched her eager expression transform to one of abject horror and embarrassment as, too late, I realised hers was a generic cheery salutation and she very definitely hadn’t anticipated a detailed description of the latest amputation, the tricky rehabilitation process and my loathing of American tan Velcro leg attachments.

 

Get the party started

I’ve never been much of a party animal, scarred by High Commission cocktail parties in West Africa, where the frenetic flickering of people’s eyes, scanning the room to identify someone more useful than me to talk to, was always very off-putting. Now, as an amputee, I find social gatherings even more of a challenge.  The first time someone trips over my prosthetic leg (which never folds away quite as neatly as the other one) and spills red wine on the cream carpet, people are quite kind.  The second time, they are less so.  Standing only really works if there is something solid to lean on within easy reach of somewhere to put a glass.  Not being so quick on my feet can result in the unfortunate missing of circulating canapés.  And it’s no good relying on Nurse Jackie for help.  As soon as he’s through the door, he’s off  – chattering away, exchanging recipes, extracting gossip and scandal and generally enjoying himself while I’m left trying to explain to the person next to me that just because I can’t move away and find someone more interesting to talk to, it doesn’t mean that they can’t.

I do have to admit to enjoying the Myriad Christmas party yesterday evening.  I did stand on one fellow author’s foot for quite a long time before he politely brought the situation to my attention but, apart from that, all went well.  I even managed to seek out (the delightfully modest and really nice) Elizabeth Haynes and congratulate her on her absolutely massive book sales, her very many foreign rights deals, and her forthcoming film of the book without sounding the slightest bit bitter and twisted. I hope.

 

Ho! Ho! Ho!

 

X Factor goes Legless

The above knee amputation is clearly the Winter Look. Even Little Mix is at it.

 

A stick in the mud

I have experienced two small triumphs this week. The first was managing the two sets of escalators at Warren St tube station with prosthetic leg, walking stick and a modicum of dignity. The trick, I now know, is not to spend the whole journey up to daylight wondering which leg should lead from the top step and just leave it to instinct and luck. The second was taking Alfie the Pet as Therapy Dog to his favourite park. This was not quite as straightforward. The path through the woods back to the car had been transformed into a scale model of the Somme. At one point I found myself ankle deep in mud and leaf mould, clinging to the branch of a small tree, contemplating calling it a day, leaving my leg behind and crawling to the car. But luck prevailed; Alflie wandered up to see what was going on and I managed to clip on his lead, will him to muster his inner husky and drag me out.

 

We need to talk about my prosthesis

Sitting in the cinema with Nurse Jackie last week, I experienced an unsettling moment of empathy with Lionel Shriver’s Eva Khatchadourian and a glimmer of understanding of why she needed to talk about Kevin. I know I am supposed to like my above-knee prosthesis – other people seem to be pretty impressed with it – but I really don’t. Like Kevin, the leg is a glowering, malign presence. I have moments when I think it’s not too bad but then it moves slightly, and puts unbearable pressure on places I’d very much rather it didn’t. I lurch into the disabled loo to try to adjust it and sense it smirking in the corner as, flustered and flailing around, I accidentally pull the emergency cord. I imagine it rolling its eyes as, morning after morning, I’m defeated by the leg-sock-socket-belt-pants-tights- shoes-order-conundrum. Like Eva remembering her childfree days as a travel writer, I’m wistful for a time when I was unencumbered by this new and unwanted entity which slows me down and makes me feel horrible about myself. I tell Nurse J that nothing good will come of him admiring it, but will he listen? …

 

Stoicism and spark

My eye was caught by the cover of the review section of The Observer this morning – a self portrait of Giles Duley, a photographer who lost both legs and an arm in Afghanistan – a brave and interesting portrait of a brave and interesting man.
http://www.guardian.co.uk/artanddesign/2011/oct/30/giles-duley-war-photography-afghanistan

The accompanying piece was informative and ultimately optimistic, though I take issue at the journalist mentioning “phantom pains from missing limbs” in passing, as though they were but a minor irritant.

 

The Tuesday Group

 

“We must learn how to explode!”*

Yesterday, out of nowhere and just as I arrived at work, I was overcome by a rage so powerful that I had to sit in the car until I could breathe properly again.  Rage that I’ll never again feel really good about how I look; that I’ll never be able to jump out of bed and get on with my day; that not a day passes without people wondering what has happened to my leg; that every day for the rest of my life I’ll have to strap on half a stone of metal, foam and plastic; that I have to live with unbearable burning and fizzing right down to my non-existent foot which people seem to think is “all in the head”; that I have to take drugs about whose side effects I don’t even dare read; that one missed step is a fall; that so much disability access isn’t at all; that I have to ask busy colleagues to make me a cup of tea; that I have to ask people to carry things for me; that I can’t get anywhere fast enough; that there is nowhere to sit down in shops; that the disabled showers at the pool are at the end of a wet corridor; that I have to worry about how to give a powerpoint presentation on one leg without falling over; that it takes longer to dress my prosthetic and get it on right than it used to take me to get up and out of the house; that I have to ask people if their stairs have banisters before I visit; that staying at friends’ houses now seems just too difficult;  that people think that having a prosthetic leg that looks just like the other one will somehow make everything all right.

*Emil Cioran