Wednesday, 11 May 2011

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 clich├ęs.
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!


Mim said...

Dear, dear NMJ: I read you.

nmj said...

Lovely Mim, it wasn't all bad, I did have fun too, but so very silly to force myself back to study/work so soon, it was the undoing of me. And London is just not the place for fragile health!

greenwords said...

Brilliant post. Thank you.

nmj said...

Apologies for the fonts on this post being screwed up, blogger has decided not to work today... everything is chaos!

Amy said...

As greenwords says: brilliant post. I wonder how many of us might just possibly have made a better recovery without all the pushing and denial in the early stages of our illness. A neurologist told me that in my case, I probably made myself worse that way - taking A levels and starting a degree when I was constantly physically collapsing. I sat exams where I could barely see the paper and struggled to hold a pen. And so much of this was to prove to myself, and those around me, that I wasn't malingering. 20 years later and here i am, bed bound.

I don't want to hijack your blog comments with my own story, but reading your post brings it all back so powerfully. And this comment is my tiny contribution to awareness week.

Reading your post, I well up with sadness and empathy but most of all with your strength and spirit and talent - you have those in spades. Whatever the PACE people say, you know you can hold your head up with the strength you show in the face of this damn illness. Xx

sylvieromy said...

Very moving

nmj said...

Blogger is having major problems & all posts & comments from yesterday have been removed, I am not sure if they will be restored, but I'm letting things lie over weekend. if your comments do not reappear, you may have to post again.

greenwords said...

This is a brilliant post and I thank you for it, and your tireless blogging efforts in general, highlighting important issues in your inimitable way.