Some years ago I was in bed for most of the time over six months, recovering from a severe illness that left me underweight, exhausted and almost immobile. My home was, literally, a building site. Walls missing, cement dust everywhere. When I first came out of hospital it took half an hour, in blocks of ten minutes, to climb up three flights of stairs to the bedroom, the only usable space.
For years, I’d been working full-tilt for 12 to 18 hours a day in several jobs, lots of creative activities, and achieved a lot. I crashed every couple of months, sleeping for whole days. Humpty in pieces. (Not good, don’t do it). I’d had chronic fatigue symptoms for a year before getting a fungal infection in my lungs; I imagine my immunity was low. After my chest cleared I went home to recover – very slowly, a little every day. Waiting for enough energy to do the next thing, my mind was more or less blank.
One afternoon, as weak winter sunlight reached my window, I saw a thought coming. It was a long way over to my right. I felt excited, anticipating. I could remember thinking – holding ideas and feelings in my mind, turning them over, finding a new way of integrating them, formulating afresh. I hadn’t done it for months.
The thought came nearer. I couldn’t see quite what it was, but I knew it was a thought, and that I would have it soon. I imagined it as a little shining fish, swimming towards me.
I remembered myself – it was the start of putting myself back together again.
And then, inevitably, it moved away.
I tried holding onto the thought but it slid away, sideways, to my left, flicking against the light. Within a few seconds I could not remember what it was. (I cannot now. I only remember the shape, the golden feeling it gave me).
The loss, despair, was devastating. It was how I imagine drowning, what the fungus filling my body had felt like during all those weeks when it grew out of control in warm damp darkness, covering every alveoli opening with grey-green matter. I wondered if I would ever think again.
It took a while, but I got back to some of my former capacity. I could feel the difference. I had lost some of the edge – the twists, the flights – that I’d had before.
It has taken much longer to accommodate to living with the loss. Old habits launch me into ways of thinking I was used to, used daily for 45 years. Every day now, I hit the walls, find my limits.
And now, too, I’m getting older, I’m more conscious of little blanks and blips. Not just the one where you arrive in a room without any idea of the reason for coming there. Other things happen too, which might be evidence of ordinary ageing that I haven’t heard about, but might also be Alzheimer’s, dementia, or something resulting from earlier life experiences. How would I know?
What I do know is that I need to record how much I’m forgetting, how many times it happens, whether I really notice the changes. I trust that – at least for a while – I’ll be able to read and understand the thoughts I can write about here.
I also recognise the need to tell someone what’s going on. I’ve asked friends and family to tell me if they notice me forgetting things, but they laugh and tell me I’m worried about nothing. It would be hard to tell them about most of what I notice in myself – and neurotic. I expect that what I experience isn’t uncommon, but we don’t talk about it until things have gone so far it’s obvious to everyone. Perhaps someone reading this will notice things I can’t.
This blog is to record my progress, my aide memoire. You can tell me about your experience too, if you like.