by Marion Michell
You can listen to an audio-recording of Marion’s essay on Soundcloud.
Lately the phrase you’re just not good enough has plagued me greatly. My art, my writing; my sleep, my rising; my ability to connect, converse, consider; my quests for energy and cure; upswing of any sort – everything seems veined with lack.
M.E. is like a burglar who steals from you every minute of every day. Its booty is your energy, half a sackful of cognitive functions and whatever else it can find. Out goes your profession, your social life; your mobility, vision, memory; your ability to look after yourself without help; your idiosyncratic vitality – in short: the way you were in the world. Focus is on basic needs (food, baths, medical appointments, the occasional visitor…) – a handicap for stirring conversations. Self-confidence is always on the wane.
For a while art-making (in the supine) sustained me. As one thing after another fell away, creative endeavours brought pleasure, meaning, purpose, and a wavering self-belief. When capacity and vision waned, I found recourse in writing. Although it hasn’t built the bridges I keep hoping for, it helps me maintain a sense of self that is not overwhelmed by this wretched illness. I wonder though if all I ever do is churn out pretty monologues. I ache to do my bit for M.E. awareness and shine a little.
Our lives can seem obstinately static, to ourselves, but esp. to the outside world. Not much to describe as far as interesting activities are concerned, no fireworks to report (although there is passion), no adventures (not for lack of impulse), rarely achievements which count in the wider world (somehow ambition survives). My modus operandi is patchwork, minutes here, there. This text, surfing the net, conducting (!) a telephone conversation… I bet you know it too: activitus interruptus!
When silence and solitude shape your days, they lose their gloss! Most of my face-to-face interaction is with professionals (carers, befriender, doctors); encounters with friends are precious. Many of us can’t attend weddings, birthday-celebrations, funerals – the rites that bring and hold people together. We follow the changes in our environment with nose pressed against a car window (if we’re able to leave the house). The company of books becomes elusive too (oh, I miss reading), as does keeping up with the news in more than rudimentary ways. It all impacts one’s sense of connectedness and confidence.
The often condescending attitudes towards #pwme, by parts of the medical profession, the media, the benefit system, even those around us, have affected me over the years. Here’s the catch: when I’m at my worst my tired mind latches on the words personal shortcoming. And: I feel shame about craving acknowledgement and affirmation – proof that I exist to others.
How do folk who live with chronic illness, esp. those of us who are mostly or completely housebound, hold on to or bolster a positive form of self-belief? How do we speak confidently from a place of vulnerability and need? I am not partial to 10 splendid ways to help you overcome-fare, or ending on a note of resolution. This stuff is hard! Want to say that much though: I think the great strength we (by which I mean: people with chronic illness) share is resilience. Here’s a building block, if ever there was one.