The walling off that illness brings

At the end of January I spoke at a Scottish Parliament event to raise awareness about the dire lack of services for ME sufferers: there are currently no consultants in Scotland with expertise in ME - and only one specialist nurse in Fife. We do, disturbingly, have the Lothian ME/CFS clinic - again, no expertise in actual ME, it appears to treat 'chronic fatigue' - and people are reporting harms from graded exercise therapy on offer. I met a young woman who now uses a wheelchair because of being made worse by graded exercise. And a mother spoke of her young son having a seizure because of graded exercise. This is horrifying. And they are not alone, many with an ME diagnosis have reported worsening of symptoms because of exercise therapies they have been pretty much coerced into. This exacerbation of symptoms is unsurprising as ME sufferers have poorly understood mitochondrial dysfunction. We *cannot* exercise without provoking highly disabling post-exertional malaise. My abnormal EMG and muscle biopsy from 1984 demonstrated this.

The platform of the event was a twenty minute showing of UNREST film (my review here) and Jennifer Brea, the director of the film, spoke via Skype. When it was my turn to speak, I was more emotional than I thought I'd be, I had to pause a few times, the words clogged in my throat, I was sure I would cry. There was  a palpable collective trauma in the room, the harm visited on ME patients was obvious in the mood of the audience. I do hope the sixteen MSPs who attended will follow up with action and address the issues this much neglected patient population faces. I gave a copy of The State of Me to Joan McAlpine, the MSP for South Scotland, we were both at Glasgow Uni in eighties, so I thought the novel might resonate for her.

There is going to be  a debate in Westminster on 22 February about the harms of PACE - this has been secured by Glasgow North West MP, Carol Monaghan. It is crucial - and hugely welcome - that this is happening. The tables are turning, though the clowns who have harmed us will not bat an eyelid and indeed continue to defend the nonsense of GET/CBT as primary treatment for a neuroimmune illness - the fact that patients are being made more ill doesn't seem to touch them. How convenient to wear so easily such armour against the truth.

I have been thinking about autumn 1983 when my fellow students who had completed their years abroad were gathered excitedly in the Modern Languages Building for the start of the new academic year - the Junior Honours year (our fourth year of study). There was so much to catch up on - this, of course, was pre-Internet - you had to actually see people or phone or write in order to know their news. I remember having to sit on a table in the hallway - it was mobbed, my legs were weak, I had constant pain in my spine - and feeling entirely walled off from the buzz and the joy of it all. I felt like an impostor.

I had only been able to do six weeks of my year in France and had to abandon it in the end. I would  not be starting Junior Honours - I'd been on course to do joint French and English Honours and got glowing comments in my second year English exams -  but had now signed up for just one class a week, which would enable me to finish an Ordinary Arts degree. I'd been diagnosed with Coxsackie B4 by then and had just started seeing Professor Behan - happily, there was an ME specialist in Scotland in 1980s - but I'd not yet had my ME diagnosis. I was very poorly but, there I was, still trying to keep a foot in the well world - much to my detriment, of course (I had no idea of the horror ahead). I could cry thinking about it now.

'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. 

Writing about writing

Is there any process or human endeavour that has as much written about it as the act of writing? It seems to be endlessly discussed, a subject of fascination. I enjoyed this recent article. Still, when (famous) writers reveal their tips, I half want to run away, as so much of this advice relies on physical wellbeing: Get up early, write so many hundred words, don't leave your desk 'til bla bla bla. The only thing I find in common is we all write in our pyjamas and drink cold coffee. And I really liked this article by Jenny Diski, which I may have blogged before. She sagely says: Not starting isn't the end. At least, not necessarily. Although I am the opposite of prolific, writing is always there, the impulse, anyway. I can't imagine not  being allowed to write, having no tools, that would be my idea of hell. There is nothing more exquisite than the process of writing taking you away from yourself, you don't even know you are doing it. Was thinking  back to 2008, it took me a year to recover physically - and emotionally - from the hurlyburly of The State Of Me, then I got recurrent uveitis in 2009 (which,  touch wood has gone for good, I stopped treatment last October). Then last year we had the carpetbombing of PWME with negativity from the media and a certain consultant psychiatrist and his merry men. I cried so much during that time, just feeling so thwarted by lies. Anyway, here are the very short stories which have been published since The State of Me: 'The Bangle Man' was in the fundraising anthology 50 Stories for Pakistan, and 'Parched' which appeared in Glasgow to Saturn, Glasgow Uni's online lit mag in 2010. Both stories can be read here. And I had a flash fiction 'Tinsel and Heated Rollers' earlier this year  in Caroline's fundraising anthology 100 RPM.

Daisy Miller & ME Awareness Week

What has Daisy Miller by Henry James got to do with ME Awareness Week? I recently came across the novella on my bookshelves and a sheet of paper dropped out: lecture notes from spring term, 1982 - my last term at uni as a well person. I recognise myself in these notes and it stabs me that when I wrote them I was essentially a different person. The notes brought back a memory of a letter from my English tutor congratulating me on my 'excellent' finals' paper - I think I'd answered on Daniel Defoe's Roxana. Of course, I was never able to finish my joint Honours French-English degree as I became ill that autumn, my year abroad in France totally disrupted. I had to come home - though (unlike my character Helen Fleet) I returned to France twice, desperately ignoring how ill I felt - and spent most of that year having medical tests. Foolishly, I dragged myself back to uni in autumn 1983 - all I knew was that I'd had Coxsackie B4 virus. The symptoms persisted, I remember clearly the overwhelming nausea and pain in my spine. I managed to get an Ordinary Arts degree, a degree all the same, but a lesser degree. I only needed one subject - a couple of classes a week - luckily I'd earned enough credits in my first two years. I was ill at my graduation and I look hellish in the official photo. I wouldn't let my mother display it.

My friends had not yet graduated, they were still studying for their Honours degrees. I was experiencing that first walling off, of not being part of the life I should be leading. That summer I got worse - my symptoms had literally multiplied - and was bedridden. I was diagnosed with ME by a consultant neurologist and in winter I had a plasma exchange, the first of many experimental treatments. The toxic awfulness of severe ME is almost impossible to describe:

We were all guilty of clichés.

Have to get worse before you get better.

Tomorrow’s another day.

Light at the end of the tunnel was the favourite, but my symptoms continued to synchronise themselves in a vicious kaleidoscopic pattern and all I could see was black.

(Extract from The State of Me)

I remember hell and enforced resting and hoping then pushing myself (again, far too soon) back to study part-time for an MSc - never feeling well, always feeling I was overdoing it. I've no idea how I got that degree, I took the 'easiest' modules, I took only afternoon classes so I could sleep late in the mornings. I sat in lectures feeling like I had a brick weighing my head down. I forced myself to go to classes even when my legs were like spaghetti. My academic self was lost, I couldn't retain anything, I cried in my GP's surgery because I couldn't remember. Some days were better than others. Then - was I fucking crazy? - I moved to London to look for part-time work - most of my friends had moved to London and I thought there would be more choice of interesting jobs with part-time hours. I was thinking maybe eight to ten hours a week. I remember loving listening to GLR. I started volunteering at a centre for people with learning difficulties. One of the young men couldn't pronounce my name and called me semen, I don't think he knew what he was saying.

Four months later my whole body literally went numb in Oxford Street one day - a relapse so catastrophic that my mother had to return from abroad to care for me. There had been signs but I ignored them. Not everyone in my family was as supportive as they should have been and I haven't spoken to that person since (I think all of us have experienced someone close letting us down).

These days, I describe myself as moderate with severe dips (and I know I come across as much more well than I am). I must live my life by strict pacing, I have no choice. It's intuitive, I don't even think about it. I can feel dramatically ill out of the blue, no warning. I'm *never* symptom-free and activity always makes me worse. Any activity. Brushing my teeth still gives me burning in my arms. Writing my novel was exceptionally difficult, I don't know how I did it. Writing keeps me sane, it is my response to what has happened.

And even with pacing, the energy I do have would make a healthy person weep with disbelief and despair. I'm often housebound for at least half the week, just from the daily tasks of living. And yet I am lucky compared to some. But I can't help wonder how I would be now if I hadn't forced myself to 'recover' early on. I suspect considerably better. The problem was I didn't know what I was dealing with, I didn't know the nature of ME until I had lived it. It probably took me a decade to understand. And how could I ever have known that almost thirty years after getting ill, the circus of PACE would be the biggest show in town?

Thankfully, as a powerful antidote to this circus we have Invest in ME 6th International conference taking place on 20 May. I have now put Daisy Miller next to The State of Me. I sense that is where it belongs for now. I would like to re-read it. Less than ninety pages long, that's my kind of book!

From Glasgow to Saturn (19)

Delighted to have a wee story (Parched) - very wee, very short - in issue 19 - of From Glasgow To Saturn, Glasgow University's free online literary magazine - wonderfully named after Edwin Morgan's poetry collection (1973). I try not to think that it's thirty years since I went to uni, that would mean I am very, very, very old. I went when I was just sixteen, a couple of months from seventeen. My brothers were the same, we were all pretty much the youngest in our year(s) - at school and uni. We can go to school at four in Scotland. The other day I had hot chocolate from a vending machine and was transported right back to the student union, known as the QM, short for Queen Margaret Union (the other union, the GU, the 'men's union', didn't let women join til 1981). I still remember vividly sitting on the QM steps during Freshers' Week, an unseasonably warm October, in my clogs and skimpy Indian dress, I had a hippy thing going on back then though I hated folk music and listened mostly to David Bowie and Frank Zappa.

I am so glad I didn't know what was ahead, just sitting on those steps, carefree as hell. I got ill in my third year and unlike Helen Fleet I didn't come home from France once, I came home three times, I kept going back 'cos they couldn't find out what was wrong. I still remember trudging up the gangway onto a cross-Channel ferry, knowing that something was dreadfully and completely wrong. And I don't mean my perm - yes, I had a perm! My hair is already crazy hair - and yet I had a perm! Because my cousin had one, I wanted one too.