Sunday, 13 February 2011

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.


Susannah said...

Congrats on getting into the podcast - that's awesome! I hope a lot of people will read the book who might not have heard of it otherwise! :)

Thanks for the link to The Two Kinds of Decay - it sounds really good so I ordered it. Struggling to read right now but it'll sit on the huge pile of books waiting for a less fuzzy time, next to my bed.

It really is wonderful about Mubarak. I just feel sad that life could be so hard there for so much time to come - and I hope desperately that the army facilitate democracy as they've promised rather than using the opportunity to grab onto power for themselves. It's so unfair that such a victory comes at the cost of probably even more instability in the country for a while.

nmj said...

Thanks, Susannah, Yes, the book needs to be pushed from the ME world into the book world. As I said before I think it was a little obscured by the fact it came out so soon after the liquidation chaos in 2008, and thankfully interest in ME has kept it a slow burner, but it would be great if it had a higher profile as a novel rather than a novel about ME. Of course I am eternally grateful it was published, really I am... Yes, Egypt future uncertain but they got what they wanted through peaceful, indefatigable protest and that is what is so awesome, sorry to use such a terrible world.

Susannah said...

I hear ya on needing the book to make the jump from the M.E. world to further afield. Maybe this podcast could be a catalyst. Even if at first it's just read by people with other illnesses, that could be enough to push it further too? You never know what might make the difference! I would imagine that however grateful you are that your book was published, an author would always hope for more for their novel ... you created it and love it, so you want the most people reading it possible, of course!! (and it deserves it in my opinion)

I don't see many people, being bedbound, but some of my family have read your book now, and all enjoyed it ... and I like to think it perhaps gave them a little bit more insight into my daily life, too. My carer can't read it though as she has severe dyslexia and struggles to read novels.

It IS awesome about Egypt! Imagine being a part of such a thing - however it turns out, it's taught them and the world the real power of the little people!!

Nicky Reiss said...

Just saw a comment from you on Sarah Wilson's blog, which was a surprise - I only found her by accident when I picked up the supplement for this week's Age (Melbourne's local paper- normally I avoid it, but my mum gets it). In some ways I feel quite isolated living down here somewhere close to the Antarctic - and then suddenly there you are, on a local blog!
(And I love the colour - periwinkle? Jacaranda blue? - that you're using on your blog now).

nmj said...

Thanks, Susannah, glad some of your family have read TSoM, I feel happy when I hear the novel has helped increased understanding.

Hey Nicky, Yes, the blogosphere can really be quite incestuous! ... I have not changed my blog colour for about a year, so not sure what you have noticed! Hope you are doing okay in Australia.

Nicky Reiss said...

I'm a bit slow to notice changes - just my fuzzy brain!
Can't say I love Australia, but at least there are doctors here who take us seriously - have just had my first visit here:
and the first test done shows "leaky gut" = the first test out of many that finally shows an actual problem. (No one here I've spoken to is interested about bothering with the name - they just get on with doing something; a typical Aussie approach, I think!).