Reader, I went there!
Yes, early Sunday afternoon (11/11) I took a taxi to Tate Modern for a talk by William Kentridge whose work I have long admired. I’d booked an electro-scooter – as far as I know Tate Modern and Tate Britain are the only museums in London who provide this invaluable service – it enables me to go independently, no-one needs to push me in my wheelchair. The usual slow-motion flurry of preparations was behind me (for the day itself and those post-outing challenges) and off I was, with my trusted light-weight blanket slung over my shoulders in case horizontality called and no sofa in sight.
I can’t begin to tell you how emotionally charged these rare museum-visits are. Actually, I was close to tears, partly from the excitement of finally going, partly from the need for this to be great, to be memorable, to be worth all the effort before and after, to last me a long while.
Anyway. I went early so I could see WK’s work in the new Tanks, then had an unobtrusive (I hope) lie-down rest on an upholstered bench on the side of one of the other, thankfully dark, installation spaces – need to make it up to the artist another time and study her work…
Both WK’s art and his talk were very different to what I expected, startlingly, thrillingly so, but I’ll leave that for my next post, as I’m slowly re-assembling myself after having been swallowed whole by the subsequent fatigue. (Jonah? Really? Well, if fatigue were a whale I’d say I was currently crawling up its gullet. Unfortunately I don’t seem to ever get further than the beast’s broad tongue before a new wave thrusts me back into its dark and stinky belly.)
Back home later, my day was over before night fell, too exhausted to … anything. For once not much pain, the opposite actually: I could not feel my body, and ended up lying tightly coiled for hours, without moving, body in a knot. (It is funny and a bit disconcerting: since I’ve started writing here about how M.E. affects me I’ve come to observe my sensations closely, make lots of notes. All of a sudden they seem to count for something). Speech was beyond me. A silence spread in my head, heavy and cold like a watery snowball. My eyes seemed yanked open (this kind of fatigue does not easily yield to sleep), stuck in a still gaze into which everything around me fell flat as an image. My brain was stuck too, on an alliteration-loop: null nay not knot not-knot node notification knotification next of kin next of skin no none nay nary, and so on and so on. Is this me? This feels alien and yet I utterly inhabit this state of extreme fatigue – there’s no way around it, just through it.
The limpness of limbs M.E. brings is one thing, but everything else – spirit, purpose, connection, cognition, goes kind of limp too, and for me that’s close to unbearable. Even wanting dies, temporarily.
The chasm between having my whole being animated, challenged, nurtured by my visit to the Tate, and the time after, when fatigue furtively seeps into each and every cell and shuts whole chunks of me down for days on end, is huge. Being in the world for a few hours without sofas in attendance devours a much larger time-period in terms of energy – the days before, during which things need to be put in place for the fallout/after-effects/cessation of activity (unwashed, unkempt, in every way diminished and often painful days from which I slowly surface). And all the while I know that time still flies away from me.
But if I manage it at all it feeds my soul, lifts me out of my daily grind, the difficulties and indignities of life with M.E.: the point is to hold on to the joy of having been out – seen/breathed art for real, and even, very very briefly, chatted to Shelley and her son Ryan – as best, as long I can.
