Hospital room reminded me of Benidorm

The NHS so broken round the edges is, of course, still excellent in a crisis. I  found myself suddenly in hospital for a week in the middle of the month, and  after being out for five days was sent back for an overnight. Got home yesterday. I had not been an in-patient since 1984 when I was in a neurology ward having an experimental plasma exchange as treatment for ME. This time I was in  a cardiology ward. The week was a blur.  I was mainly in a shared ward, I recall one morning, hearing a woman who had been admitted late at night tell the doctor  she did not have her small suitcase with her because she had lent it to someone and when it came back it smelled like a bonfire. 

On Monday, I was in a side room of my own for one night, I appreciated the privacy but it was bleak, reminded me of a Benidorm hotel in 1980s, hard surfaces, no comforts and a view of a car park. I had extra blankets but still needed my coat on top.

I had stopped reading about Gaza in hospital, though I periodically imagined what would it be like if we  were being bombed. Unthinkable. I made contact with a Palestinian friend I'd had at university in eighties, he grew up in a refugee camp in Jordan. I had not seen or spoken to him for over thirty years. I wasn't sure if he would get my message but he did. 

It was a joy to hear from him.

I am so very grateful to everyone in our NHS. I thought about what had changed since my last stay, forty years ago. They don't make visitors tea any more. And many of the nurses have tattoos. 

I gave the  paramedic a copy of my 2008 novel. My plasma exchange is fictionalised in there.

Teju Cole event at The Portobello Bookshop

I very much enjoyed the event with Nigerian-American writer and photographer Teju Cole at The Portobello Bookshop last night, chaired by Roxani Krystalli -- I accessed the event online. Cole is currently the Gore Vidal Professor of Creative Writing at Harvard.

He was charming and funny - and illuminating on the writing process. He talked of writing as a way of not forgetting, a sense of 'if you don't write it down it will vanish'.

I was kind of relieved when he said that TREMOR, his new novel, is the least morose book he has written. He referred to having been a 'serious melancholic' in his younger years - he is now almost fifty - and made play of the fact he is no longer such a 'misery guts'. I had read his first (highly acclaimed) novel OPEN CITY in 2012 and confess to not having loved it, the writing is immaculate but I got weary of the heaviness of tone (I reviewed the book here on Goodreads over a decade ago). 

I am only two chapters into TREMOR and loving it. 

Near the end of the event, he alluded to the current assault on Gaza and mentioned a Palestinian friend who is just now harvesting olives. I was very glad he mentioned Gaza. I think it must be hard to perform just now as artist/writer and not mention what is going on in that part of the world.

Thanks, too, to Porty Books for making the event accessible online. Hybrid events are maybe the one good thing to have come out of the pandemic.

I don't know what to say about Gaza

I don't know what to say about Gaza, writers should have words, but I have no words. I just want to scream with despair and rage and grief when I watch the news (I watch Channel 4 and Al Jazeera's coverage,  have given up on the BBC). I can't go on marches (though how effective marching is, any more, I don't know, though it demonstrates to Gazans that many in the world are aghast at their suffering). I already boycott Israeli produce in my own tiny way, I never buy fruit or vegetables that,  to my knowledge, are grown there. I have donated to this relief agency,  Medical Aid for Palestinians. And I've signed this open letter to David Cameron. But it all, to be honest, feels pointless, Israel goes on killing with impunity, it seems there is no line it can't cross. I feel powerless to help in any real way. I don't know how anyone in Gaza stays sane. I just don't know. The average age of the 1.8 million population is seventeen, approximately a quarter of a million are children under ten. Last night, one news bulletin showed a hospital ward with horribly injured children, and a forlorn paper lantern hung up for Eid celebrations. Such details of trying to have 'normality' in the face of terror and devastation break your heart.

Jon Snow's short film is well worth watching, his reflections on reporting live from there last week.

*

Since I wrote the above, a few days ago, the USA has condemned the IDF's bombing of a UN school, while at the same time handing Israel more arms. 

More than 1400 Palestinians have now been killed, most of them civilians, the suffering of children, hideously visible on our screens.  61 Israeli soldiers have lost their lives, and 3 civilians.

I have to look for meaning in other people's words, as I have lost my own words, I feel more numb and uncomprehending than ever. There is much to read. I recommend the following:

Giles Fraser, a priest in South London London: How can journalists be objective when writing about dead children?

Aaron Bady, a post-doc fellow who teaches African Literature at University of Texas: Texas Stands with Gaza.

Tariq Ali in the London Review of Books: Disgrace.

Egyptian novelist Ahdaf Soueif's recent op-ed in the LA Times: Dead Palestinian Children in Gaza Tell Story of Impunity.

And Israeli journalist Gideon Levy in Haaretz:  It's All Hamas' fault, right, Israel?

Tanks In Our Bedrooms

You feel a helpless fury and incomprehension, you don't even want to see or hear any more news when this is the image you went to sleep with.  It's not rocket science - excuse the terrible pun - to work out that the hugely disproportionate - and brutally predictable - response of Israel is going to lead nowhere except hell. 

I came across this Granta essay from 2009 by Libyan writer Hisham Mater. He has also tweeted that: 'Most US newspaper/magazine articles I've read dwell on Israeli suffering whilst keeping any mention of Gaza brief & incomplete'.

Also read this sobering piece from the Palestinian doctor Izzeldin Abuelaish who lost three of his daughters in 2009.

And this from Yasmin Alibhai Brown in The Independent on Britain's culpable role in the first place.

When you can't comprehend you turn to the words of others:

Here is Palestinian poet Mahmoud Darwish via Sarah Irving's interesting blog.

At weekend was dipping into Mourid Barghouti's I was Born There, I was Born Here which I got for Christmas last year. He says:  Many western journalists who mantain a studied and malign blindness to the Occupation have asked me whether the Palestinian people are really ready to coexist with the Jews and I reply that we coexisted with them for hundreds of years in Palestine ...What is asked of us today, however, and has been ever since their military occupation of our land, is to coexist with their tanks in our bedrooms! Show me one person in the world, I say to them, who can live with a tank in his bedroom.'

And my publisher Scott is kindly sending me up his copy of Israeli writer Amos Oz' How to Cure a Fanatic which someone gave him and he has just finished.

* Izzeldin Abuelaish speaks about Gaza 9.30 mins into this Radio 4 programme (19/11/2012). And Mehdi Hasan,  speaks about the importance of context when reporting on Israel/Palestine conflict.

** Journalist Sherine Tadros speaks about difficulty of impartiality in an unbalanced conflict.

Prepare

Prepare to be heartbroken and inspired: Unreported World on Gaza's disabled athletes preparing for Paralympics. Channel Four.

Guardian books podcast & Egypt

The Guardian podcast on books on illness is here, I was delighted to get a mention (approx 14 mins in), I really did not expect to, thanks again so much to those of you who tweeted the editor. Just shows that being a low profile tweeter - as I most certainly am - still gets results! As is often stated, writing about illness - or any catastrophic situation - is a way of making sense of the chaos, and is undoubtedly therapeutic as well as creative. My decision to write The State of Me as a novel and not a memoir has, in my mind, been reinforced to have been the right decision; illness is still mostly dealt with through non-fiction and I simply opted for a different way. The podcast made me think back to the rocky, rocky road to getting published. I wasn't just writing about being ill, I was writing about an illness that was (is) not believed by many to be physical: it was crucial to have my voice heard.

Also, written as a novel, it had to have more than time moving it along, there had to be plot too. Of course, when your character is very ill for months and years on end, there is no plot, there is only time. We mark our days and hours in terms of feeling like hell, or slightly less than hell. But if you have a love affair at the centre of the book - abracadabra! - there is plot. Being well-versed in chronic illness and stormy longterm love affairs, that was the natural way for me to go.

This podcast is very listenable - I will go back - and features well-known, older books on illness. I've read them all except Robert McCrum's memoir My Year Off (1998) and the Barnes' translation of Alphonse Daudet's In the Land of Pain (that very much appeals, I'd find it too hard in French). Also, good to learn of a new book, The Two Kinds of Decay (2011) by poet, Sarah Manguso. I very much related to her preference of writing in sparse, fragmented prose. Sarah also describes having plasmapheresis as a treatment for her rare autoimmune condition CIPD (diagnosed after half an hour by a neurologist!), which I also had - briefly - as an experimental treatment for ME in 1984 - an autoimmune treatment for a neuroimmune illness. I thought I would die afterwards. 
 

The new plasma was from a Polish donor. The technician told me I had great veins and that I might feel faint during the proceedings. It took three hours. He told me what Highers his son was doing and what colour of carpets him and his wife were getting for their new house. When it was over he said, That’s you, you’re half Polish now. He handed me a see-through bag of my old plasma. It was the colour of dirty goldfish water. A porter wheeled me back to the ward and delivered me to Bob. I had the bag of old plasma on my lap. (Chapter Six)
 

There are, of course, time constraints but the podcast could also have included Candia McWilliams' magnificent memoir on writing and blindness What to Look for in Winter (2010). I also recall enjoying Spalding Gray's slim memoir in the nineties, Gray's Anatomy (1993), his account of searching for a treatment for an eye condition, 'macular pucker'. When I read about others' illness, there must be humour, if the tone is too earnest I will pass. And I've been thinking about what books make me feel 'better'. When I was very ill, I read Midnight's Children, it became my project. I loved it. I cannot pick up my (yellowed) copy now without being taken back to that bleak time. Parvati the Witch is the character I remember.

Interestingly, one of the readers interviewed in the podcast - twenty minutes in - who benefits from attending 'therapeutic reading groups' - actually has ME. It struck me that to have our illness mentioned, like this, is a small step forwards. It is just another illness, one of many illnesses. No drama, no controversy. A woman with ME attends a library project, just as a woman with MS or lupus might.

Just after I realised TSoM was in the podcast on Friday I learned of something truly wonderful, Mubarak had resigned. I cried a little. How fabulous that by standing peacefully in a square for eighteen days you can bring down an entire dictatorship. There are lessons here for all of us. I am overjoyed for the Egyptians, I hope the Palestinians are next, hopelessly naive as that may sound.

A very long post on balance & pain & beauty

People tell me they enjoy this blog because it gets the balance of ME and non-ME right, how do I manage it? I'm not sure I know. My impulse to write - when I am able - is what has saved me from this illness, even just a couple of sentences. My posts are often short. I constantly have words banging together in my head, I would prefer if they were gently colliding. Still, I could never blog about ME all the time, it would bore the arse off me - remember I've had this since 1983 - but of course I must mention what is important, and my rage and disgust at the non-believers never goes away and intensifies periodically.

But neither can I bear undiluted self-absorption - and you do find it on some ME blogs, ironically those who are less ill tend to be the most solipsistic. You will come across this 'monopolisation of suffering' on non-ME blogs too, I guess it's human nature. Of course, there is a therapy to blogging, and we all construct masks when we blog or FB or tweet - unconsciously or not - but when some people - the least isolated, the most supported - seem constantly unable to see beyond themselves, that depresses me a little.

Unfortunately, those with very severe ME are usually too ill to blog much, they are too busy surviving the day, hoping tomorrow might be slightly less awful. Greenwords is a wonderful example of someone severe blogging, her posts are infrequent, but she does it so bloody well. And she is a dabhand on Twitter. Gardening is her passion, she is mostly unable to do it herself, but she is a 'passive gardener' and I learn stuff from her blog/tweets. (I like blogs where I learn something.) Other (ME) blogs I dip into are Digitalesse (photograpy); Ciara writes gorgeous posts on motherhood and Dr Speedy updates us on all the lunacy with just the right amount of scathing.

There was no blogging when I was very severe, I do wonder what I would have expressed of my illness back then if the internet had been around. Intense chronic symptoms distort your view, it can be hard to think of anything else. I remember I used to write my symptoms down to keep track of them and make bargains with God, whom I've never believed in. I'm no saint but I somehow manage(d) to keep hold of the fact that terrible things - and beautiful things - are going on elsewhere, no matter how much this illness has impacted on me. Like Helen Fleet, my character, I have a sense of absurdity, which no doubt helps me cope. But I can't blog solely about my life when children are being bombed in Lebanon/Gaza, flooded in Pakistan . . . take your pick of the horrors.

Still, some days you just want everything to be good for yourself and that is okay. There are still days my heart could shatter at what I have lost. And those with unremitting, severe ME deserve fucking trophies, they really do. I don't tend to put my worst days and hours up here, I think because a lot of that is in my novel, which is my weapon, and I feel I don't have to fight anymore (though I do, really, we all do).

Life can be extraordinarily painful and extraordinarily beautiful, there is luck and there is bad luck. It is how we respond that makes the pain bearable or unbearable. And how we respond depends on who we are at the core, and also on the support we have. Without support, this illness could very easily undo you.

When I see my wee aunt (who is fifty, she has Down's Syndrome and now dementia) I get the extraordinary pain and beauty at the same time. My heart breaks every time I see her, but when she smiles, it unbreaks and the world lights up. I saw her recently and fed her a miniature Milky Way and helped her drink a small carton of Ribena with a straw. It took over an hour. She is strapped into a wheelchair during the day. I hugged her and kissed her and sang a few verses of the Hokey Cokey, once her favourite song/dance. She can no longer walk or speak or read or write or colour in. I was in a state of total exhaustion for the next few weeks from this visit up north, that scary, jetlagged, all muscles compressed into a tin sensation, clumsy and forgetful, but all that mattered was I'd spent precious time with her.

Even taking the wide and bizarre spectrum of ME into account, if you look around the internet and see just how many claim to have (or have had) ME, I still fear that it is being over-diagnosed in some places, some seem to wear it as a badge, inappropriately. This is the fault of GPs and self-diagnosers who are - understandably - stumbling in the dark because of the nonsense peddled for so long by the Wesselyites. (Yeah, we don't actually know what's wrong with you, let's just call it ME. Now, be a good girl/boy, go and do some star jumps and we will train you not to feel pain.)

With any longterm illness comes much pain and chaos - and moments of beauty. We need balance to cope with it all. I don't always get the balance right in real life, but I hope I can do it on this blog.

*I meant to add this blog before but got distracted, have been tweaking this post for a week, it started as a post about my wee aunt and went in another direction. Holey Vision writes with grace (literally, her dog is called Grace) and humour about life with progressive loss of vision. Her spirit and lack of self-pity are quite something.

Luxury items

Coriander and coffee?! These Gazans don't know they're born.

Hope?

I hope this is true.

Very interesting article in last week's Herald by Israeli Ilan Pappe, professor of history at Exeter University.

Donkeys pretending to be zebras

If you are a donkey in Gaza and you are wondering what to do for Hallowe'en, you can always dress up as a zebra. This is so sad to read, but the surrealness prevents you from weeping, and the children seem entertained. The painters have done a great job.

If you have 7 minutes to spare...

... watch this video from today's Guardian on Gaza's 'reconstruction'.

Hungry for change

I have such admiration for these medics.

Sheikh it all about

You've got to hand it to the 'Sheikh of National Unity', he wears a robe made up of flags of the different Palestinian factions, and tries to spread peace...

'Music for Gaza'

A six-month-old music school in Gaza was bombed during the siege. Dutch charity Music in Gaza will help rebuild the school when possible. This is a lovely short film of an imaginative concert organised by La Vie Sur Terre last year in Bethlehem. The project was called Carried by the Wind and musicians performed on rooftops on both sides of the Israeli security wall.

Wondering

I have been wondering what has happened to 'The Tea Boy of Gaza,' Mahmoud, the wee boy featured in a BBC documentary I saw in 2006. I wonder if he is still alive.

Lies, lies and more lies

I am worn out with rage and a sense of hopelessness, reading about Gaza. The cemeteries are full, Palestinians are having to open up pre-existing graves to bury their dead (this clip is grim). And when you learn of a centre for orphans and handicapped children being bombed, you just kind of collapse inside.

But children of Gaza are somewhere still playing in a courtyard, the children are still playing.

Mark Regev, whom I watched in disbelief last week, sleekitly trying to defend the bombing of a UN building which was sheltering refugees, looks just a wee bit sheepish in this clip - the Israeli position all along has been that Hamas broke the ceasefire - Hamas say they didn't (not that they are guardians of truth, that is not what I am saying) - but he knows he's been rumbled and admits that they did not fire rockets during the ceasefire.

Oh and two of the Arab parties have been banned from standing in the forthcoming election. And are foreign journalists ever going to be allowed in to Gaza to report during this crisis?

Israel, your sense of 'democracy' is fucking shameful.

* the first clip I link to has acquired a 'pre-view' commercial for McCain's oven chips since I first posted - this is enraging, and feels slightly offensive.

??????

Oh for fuck's sake...

In this clip, a relief worker talks of injured Gazans being injured again as they waited in a hospital next to a mosque that was bombed (there is a very annoying car advert for the first minute of the video, but bear with it).

Update ... I just saw this by Craig Murray.

Hell

What is this achieving, exactly?

Too Much to Bear

BBC 2 tonight: first there was the live coverage of the baby seal, covered in blood and dragging itself along the beach. I don't know what was wrong with it, I missed the beginning. I fear it will not last the night. Then there was 'The Tea Boy of Gaza', focusing on the lives of those who work in Shifa Hospital in Gaza. The doctors and nurses (like all government workers) have not been paid for 6 months since Hamas got in and the west cut off funding. One orthopaedic nurse drives taxis after his shifts, he has seven children to support. He still managed to joke about things and shrugged off the situation, saying, Life in Gaza is strange. The Shifa medics not only have to patch up the hideously injured, they have to contend with the armed visitors who swarm in the corridors, guarding the injured. Fights often break out between factions of Hamas and Fatah. In one scene, two warring families shot each other in the car park, doctors had to abandon the ER, and the hospital director was hiding in his office, crouched on the floor. Weaving in and out of the chaos, 12 year old tea boy, Mahmoud, can always be found. He supports his six brothers and sisters by selling tea to the staff and patients. He boasted about his 'regulars' and how he can often sell out in the maternity ward. He said he likes to watch the drama of shootings and he has lifted up the body parts of martyrs, though he was so scared afterwards his mum had to take him to a faith healer. He is peeved that it's harder to get into the hospital now because of increased security. But no matter how grim things get, he can be seen with his kettle, running here and there to sell tea.

Fishermen Who Are Not Allowed To Fish

The fishermen in Gaza have not been allowed to fish since late June, and even when they are allowed to fish, they have to stay within a six mile radius and are shot at by Israeli gunboats if they try to go further.

No matter that the Oslo Accords agreed that the Gazan fishermen could fish out to twenty nautical miles.

Around 35 000 people in Gaza depend on the fishing industry for their survival. Imagine how it feels not being allowed to fish on your own fucking coastline.