Thursday, 11 February 2016

Penelope Lively on ageing reminds me of getting used to being ill at twenty

I've just started Penelope Lively's memoir Ammonites and Leaping Fish, I had not heard of this book and am glad that artist and writer Nancy nudged me in its direction. For a long time, I've been reading about South Asia in 1940s and 1950s in an attempt to put together some kind of fictionalised version of my father, and Nancy told me Penelope talks about Suez in 1950s, which is perfect as my dad travelled by ship from Pakistan to UK at least once in that decade (I even found the passenger list). I'm not yet at the Suez part, but Penelope's chapter on old age makes me smile. Talking about adapting to old age - she is 80 - she says:
You get used to it. And that surprises me. You get used to diminishment, to a body that is stalled, an impediment? Well, yes, you do. An alter ego is amazed, aghast perhaps - myself in the roaring forties, when robust health was an assumption, a given, something you barely noticed because it was always there. Acceptance has set in, somehow, has crept up on you, which is just as well, because the alternative - perpetual rage and resentment - would not help matters. You are now this other person, your earlier selves are out there, familiar, well remembered, but you have to come to terms with a different incarnation.
Getting used to a different incarnation is, of course, very different when you are young and the catastrophe of illness has punched into your life. I always say it takes about a decade to get used to having ME. That's probably how long it took me. In The State of Me when Helen is still horribly ill, aged 21, in bed, she lists 10 things about her old life:
6. Looking at photos of other self in other life. Tracing finger over old self, a smiling girl in a hockey team. My hockey stick lay like a corpse in the back of my cupboard, club foot poking through my clothes, reminding me of my frailty. I had tried to throw it out twice, but Nab had brought it back in.
And in real life I didn't really ever have difficulty accepting, it just was, though at the beginning, when acutely ill, I was more terrified than anything of how ill you could feel and not be dying. I think I have always dealt with my illness with dignity, but there may well be some rage at the fucking circus of psychiatrists who have made life so hard for us by denying our illness is physical. The PACE trial is crumbling though. And we have Americans - journalist and academic David Tuller and professor of psychology James Coyne - to thank for that.

(And I had to look up ammonite. )

Tuesday, 12 January 2016

'Five Years'

I cried last night watching this BBC Two documentary 'Five Years', which focuses on five key years of David Bowie's work. I loved most of his seventies' stuff, the later music less so. I also loved the clips - 1 hour 9 minutes into the programme - of him playing John Merrick in The Elephant Man, with exquisite vulnerability and beautiful ugliness.

I had not followed Bowie's music for a long time but there was a time when he was all I listened to, in my teens and twenties (alongside Leonard Cohen and Frank Zappa). The outpouring of sadness on social media is, of course, not just the passing of an extraordinary and unique artist - aged only 69 - but the mourning of our own Bowie-wrapped memories (and that wrapping has beautiful, silver bows).

But now a shift has taken place and our memories are, in a way, suddenly hollow. 

I had all of his albums, my cousin and I exchanged 'Heroes' and 'Space Oddity' as Christmas gifts one year, I don't remember who gave what, but he was so physically beautiful on both covers. I remember how the 'Diamond Dogs' cover folded out. It was sumptuous. And how I could never get into  'Lodger', I'd play it over and over, hoping to like it more, but having to admit to myself I didn't...

I remember seeing the German film Christiane F. at a Glasgow cinema (no longer there), mesmerised by the Bowie soundtrack. The boyfriend I went with died many years ago from a brain haemorrhage,  I don't know the circumstances, we had lost touch, but I remember what I wore to the cinema that night, a long red cotton Indian print dress.

(I also remember the pink trousers I wore, dancing to 'John I'm Only Dancing' in the QM Union.)

I don't have a favourite track, it's almost impossible to choose one, but the song that always pierces me is 'Five Years' and it is in my novel. When I was told by a consultant neurologist in 1984 - almost eighteen months after becoming ill with Coxsackie virus - that I had myalgic encephalomyelitis (ME) and it could last for five years, I was horrified and truly didn't know how I could bear feeling so  ill for another five years. I was twenty years old. My character Helen Fleet says:

On the way home in the car, I hoped we’d crash and that I’d be killed instantly and Rita would walk away without a scratch. I kept thinking of the David Bowie song ‘Five Years’: . . . five years left to cry in . . . steady drums, louder and louder and louder . . . five years, stuck on my eyes, high violiny bit. (The State of Me, Chapter Five)

It's hard, I think,  to describe Bowie without resorting to dreadful clichés - all I can say is I have a lump in my throat and even writing this I have tears. Yesterday, I realised how much of a part he had played in my growing up. When I hear the tinkling at the beginning of 'Ashes to Ashes', I am back in my childhood living room in 1980, aged sixteen, not yet ill, watching Top of the Pops. At New Year, I tweeted this, it feels a bit dislocating now. 

Tuesday, 5 January 2016

The Appa Dance (made us happy as carpets)

We had much hilarity with MadLibs over the holidays. My eleven year old nephew introduced us to the game. You're asked for adjectives, adverbs, nouns, names and places, but only the questioner knows the title of the story. A narrative emerges, flash fiction, nonsensical and surreal. Appa is my nephews' nickname for me, sometimes they will call me Appa instead of Auntie Nasim. (My brothers and I had a very old aunt in Pakistan when we visited in the seventies, we knew her as Auntie Appa, we did not know then that 'apa' was Urdu for elder sister, we thought Appa (two 'p's) was her name.

The Latest Dance Craze
Have you heard about the latest dance craze sweeping Paris? It's called The Appa! Slip on your hunting shoes, turn up the speakers on your Christmas tree and let's master the moves that put this bleak dance on the map: put your hands on your shins, stomp your nose and strike a sad pose. Take fourteen colourful steps to the left, spin irresponsibly, then take two boisterous steps to the right. Throw your mouth in the air and sway your foxes from side to side. For the big finish, stick out your belly button and wiggle it excitedly. Repeat all of these circular steps until the song is over.

It reminded me of The Time Warp in Rocky Horror. In the early eighties, we spent many a happy night as students in the cinema, doing all the actions. In another Madlibs,  'happy as carpets' came up. I want to use that gorgeous phrase in a story.

*Update I received this photo on Twitter of the 'happiest carpets I know', stunning image of dyed rugs drying in Tangiers:

Friday, 4 December 2015

The Bridge

When we speak of The Bridge we are usually thinking of the Scandi drama. My stepfamily in Sweden (my late Danish stepdad's children from his first marriage) tell me they had the final episode of Bron last weekend and it is thrilling right up 'til the last minute. I say, Don't tell me, I don't want to know!, but when I say I don't trust Saga's mother they hint that perhaps I am right. But now in Scotland we have our very own bridge drama, the Forth Road Bridge has been closed for at least four weeks while a 20mm wide crack is repaired. It feels a little like the end of the world with the incessant, incessant rain and now no bridge. But of course it is not the end of the world. Many will be hugely and dreadfully inconvenienced, but the bridge will be repaired and everything will go back to normal. It is interesting though how a change in infrastructure - real physical change - can make you feel a bit panicked. I see everything in terms of energy and for me, to get over to Fife now by train - my close family is in Fife -  rather than bus, will take much more energy. It will be a horrible journey. The chances of getting a seat seem slim and I can't stand (for long) on buses or trains (or anywhere), so I am screwed. If there's standing room only I can't go, even for a twenty-five minute journey*. Still, I thought today of cities elsewhere who are having their infrastructure bombed daily and how they cope, how they have to cope.

It really did feel like the end of the world three weeks ago. I had come home from short errands, and realised on the bus that I was wearing different boots on each foot. I was more bemused than anything (I'm just surprised it doesn't happen more often, the  'brainfog' with my illness is frequent, I guess I am just used to it). As the evening unfolded, the Paris atrocities were being reported and my bemusement about my footwear changed to horror and disbelief. The next day when I woke I wanted Paris not to be true but of course it was. I felt a stone in my heart and wanted to cry but could not. Later that afternoon, I saw goldfinches in the garden - beautiful, beautiful wee jewels - for the very first time and it felt like a sign. In spite of the horror, there was still beauty in the word. They gave me hope. I have not seen them since. When you've had goldfinches once, you want them every day.

* I now have a folding walking stick, the best thing I ever got, should have had one years ago.

Sunday, 8 November 2015

The clamjamfry of the PACE trial

It's quite a clamjamfry in the world of ME research at the moment. The dodgiest-of-dodgy-trials aka as the Oxford PACE trial is having the life shaken out of it in the form of American health journalist and academic David Tuller. Tuller has recently and comprehensively demolished the trial over on Prof Vincent Racaniello's virology blog. And James C Coyne, professor of health psychology - and visiting professor at Stirling University - is weighing in too. The Americans have come to save us.

I often speak of the ME narrative being taken over by the CFS narrative in the nineties, and by chance I came across an ITN clip from 1996 - lovely Trevor McDonald informing us that ME was no longer known as ME, but now officially called CFS, and Simon Wessely (not yet knighted) telling us that longterm cases of disability had a psychological component. All interspersed with an exhausted woman telling us how very tired she was - no disrespect, but she apparently had (slow onset) chronic fatigue, not the actual neuroimmune illness ME. And glimpses of a shady-looking medical panel making this name change decision. So now we have actual visual proof of when the trajectory began: Ramsay-ME being buried by the psychiatry-led UK medical establishment. I'm so glad I didn't see this in 1996, the television screen would have been cursed to hell. (And given that the feisty consultant neurologist who diagnosed me in 1983/4 had also studied psychiatry at Harvard, you'd think he *might* just have picked up on any psychological component...)

But it has all come back to bite them on the bottom, as PACE is, of course, rubbish in so many ways. Conflating a complex, poorly understood neuroimmune illness with chronic fatigue was never going to work, was it? Apart from the methodological flaws/holes, what enrages me is that the scaffolding of PACE is that ME is perpetuated by false illness beliefs - even if virally triggered - and that changing how you think about your illness (CBT) and a wee graded jog (GET)  round the park will make you all better. No matter that many people with ME are reporting becoming *more* disabled after graded exercise therapy. Once mild or moderately ill, now bedridden. No matter that you can't fucking exercise because your head shuts down and your muscles burn and you become exhausted and weak as  soon as you remotely overdo it. There is mitochondrial dysfunction, that's why. But PACE makes no allowances for post-exertional malaise (PEM).

Anyway, in response to Tuller, Simon last week wrote a defence of PACE - full of rather dull nautical imagery - which was quickly satirised by Graham McPhee, a former maths teacher who had to retire ten years ago due to ME. In the meantime, while PACE implodes, there is great research afoot. At last month's research collaborative meeting in Newcastle, virologist Professor Montoya of Stanford apologised to the ME community and said it was his wish that all USA doctors would apologise to ME patients for the way they been treated (and what a pleasure it was to meet him briefly and shake his hand). The Norwegian government has already apologised, a shame that the UK neither has the impulse nor grace to do the same. Here is the summary of ongoing and new research presented in Newcastle written up on ME Association's site by Dr Charles Shepherd. And the USA's NIH has just pledged a massive injection to research.

My 14 year old nephew sent me the first draft of his short story assignment for school, I love reading both nephews' writing. I'm bemused by the arc of good versus evil - the Americans are all powerful and good, fighting evil terrorists who want to nuke the planet. Of course, in real life, there is much more grey, but as far as PACE is concerned I'm very glad we have the Americans on board. One can sense they are flabbergasted at how the UK media has been bolstering the psychiatric lobby, presenting only one - very flawed - model of ME for the last twenty years.  And on the subject of nephews, my younger nephew, who's ten, almost eleven, dressed up as an assassin at Halloween. *

* update Welcome article by doctor/journalist James Le Fanu in Telegraph on the nonsense of PACE - rare to have intelligent articles on ME by UK journalist.

Sunday, 20 September 2015

Two papers and two films

I very much enjoyed this paper by Rose Richards: Writing the Othered Self: Autoethnography and the Problem of Objectification in Writing About Illness and Disability - she writes from the point of view of someone who has had a kidney transplant and notes that there are not many narratives around her particular illness. I found lots  resonated, although the paper refers to non-fiction/academic writing.

Also, a recent USA report via ME Research UK  is well worth a look, I have not read the whole report, it's very long, but the key arguments about ME are there. I've quoted a short paragraph via a tweet.

And I recommend two films I saw on DVD this month - both, by chance, about actors rehearsing for a play, and the lines they rehearse echoing real life. Cycling with Molière (in French with Fabrice Luchini whom I adore) is lighthearted and funny, though slight. Still, I probably enjoyed it more than the somewhat pretentious though clever Clouds of Sils Maria (with Juliette Binoche, but in English). We studied  Molière's  L'Avare  at university all those years ago and I recall the mirth like yesterday.

Saturday, 12 September 2015

Art and death and farewells in Glencoe and Greenland

Twitter can be wonderful. I first met artist and writer Nancy Campbell via Twitter, last year in March. Nancy had favourited a snowdrops photo, and I discovered she had produced a beautiful book, in the form of art cards, How to Say 'I Love you' in Greenlandic. I immediately got the book for my stepdad (I may have traded a copy of my novel for Nancy's work, I can't recall - I've done this several times, used my novel as currency for art).

My stepdad spent many happy hours reading through the cards, enunciating the Greenlandic words - I can see and hear him now - correcting me when I got the pronunciation wrong. Childhood memories are important in dementia, and we didn't know the old songs/fairytales/poems that would stimulate him, so these cards played a special role.  When he died, I wrote a message on one of the cards, wrapped gold ribbon round it - a bit 'blingy', but it was all I could find - and placed it in his coffin. I wanted to put more things in - there is an instinct, I think, to put in many objects of comfort for the departing soul. Though that is, of course, more to comfort ourselves.

I was delighted when Nancy told me she'd applied for an art residency at Ilulissat's Emanuel Petersen Museum, which, before it was a museum, was my stepdad's childhood home. We could not have known that by the time she did the residency my beloved stepdad would have passed away. By sheer coincidence my mother had planned to scatter his ashes in Glencoe, the same week Nancy was in Ilulissat. Nancy kindly asked if there were any mementoes of my stepdad's we would like her to take to Greenland. We decided to send her his order of service with loving messages written on the back by various members of our Scottish/Scandinavian family. I asked Nancy to perform whatever ceremony she could, I suggested making a wee boat and floating it away, but was putting the event entirely in her hands. I knew she would know what to do.

Scattering my stepdad's ashes in Glencoe - or more accurately Glen Etive - was a peaceful and beautiful occasion. The sun shone and we played Local Hero soundtrack gently in the background - he loved this music - and my younger nephew played a sad folk song on the violin. Buachaille Etive Mor stood solid and strong in the background. There were deer,  and house martins diving all around. We put a few drops of whisky on the ground to send him on his way. I brought back some wild flowers and pink heather, the flowers died straight away, the heather has survived and is on my bookshelves.

Early on in their marriage, my mother had a local artist paint Buachaille Etive Mor for my stepdad as a gift. It was one of his favourite spots in the world. The painting hangs in their house and now when I look at the painting I know he is there, physically part of the landscape. Internet connection in Greenland and Glencoe is, unsurprisingly, fickle, so I did not know what Nancy had done on that day, but I did think about Greenland when we were in Glencoe and was curious.

Last week, Nancy sent me a beautifully detailed, long email of what she had done, I read it in tears, touched by her great thoughtfulness and creative gestures. She had placed my stepdad's memorial card on top of the harmonium in the museum for a couple of days, among the stunning Emanuel Petersen paintings. And she put sage leaves around him that she'd brought from her garden in Oxford. She said she liked the idea of sage helping spirits to rest. After the harmonium, for the final goodbye, Nancy chose to place his order of service in an Ilulissat hilltop graveyard, under a piece of gneiss she had chosen as an anchor. She placed him at the southern most tip of the graveyard, pointing towards Scotland. She told me that in Inuit culture, wide views of the sea are important for the location of burial sites. This is a photo of the cemetery taken by Nancy. There are harebells and blueberries growing, and mussel shells and plastic flowers on the graves.

                                                                     Ilulissat, photo by Nancy Campbell, 2015

Nancy and I have never met - though I hope we do, one day - and she did not know my stepdad, but by a quirk of fate, she became intimately involved in our bidding farewell to him. His twin brother, who lives in Copenhagen, hopes to scatter his remaining ashes in Ilulissat next year. Then the farewell will be complete.  I think of how our lives are threaded, my stepdad could never have known that the artist whose cards he enjoyed so much in the last year of his life would be taking him home to Greenland. And Nancy, when she favourited a photograph - garden snowdrops I'd taken on my very unsophisticated phone - could not have known where that would lead.

It is seven months now since my stepdad's passing, my own grief is more gentle, for sure, but it's without exaggeration when I say that he was my best friend. Now that he is gone I know this more than ever. I have yet to meet a kinder man. Thank you, Nancy, for what you did for him.