It may not be obvious, but this is a picture of someone experiencing extreme fatigue after a long journey to an emotional destination. Well, the view from the bed.

INVISIBLE HISTORY

Horrible as it sounds, it was really reassuring to hear from a much younger friend who works from home that, since lockdown, she really can’t appreciate going out more than three times a week, and recently turned down a tasty invitation because she was just too tired. Asking around, there seems to be a consensus on this. Amongst our retired friends are a lot of busy bees, ‘joiners’ who belong to various clubs, societies, choirs, volunteer groups and so on, and even if they remain on the membership roll, they’ve cut back in the number of events they attend in a month. The musical bulimics have finally worked out that two choirs is enough. It appears that everybody’s social stamina has diminished – and we’ve remembered the things we like about a cosy night in. Also, there’s less guilt-tripping as organisers somehow know not to put on too much pressure for attendance.

Standing back from the pandemic years, yes, you can say there was a shared experience on a national level. But the way that experience played out was different for everyone, and tough experiences are that bit harder when your health is compromised in any way. To give a physical example, we both picked up a virus at the same time – non-covid, phew – but whereas I experienced it as a cold, Terry was laid up with flu symptoms.  Our respective lurgies took their course with surprising synchronicity: feeling grotty – deciding you’re ill – worst day – feeling better today – over it.  His symptoms were worse than mine, though. The same goes for other spheres of life. 

Periods of low energy are something that stroke survivors are used to, although the length and the frequency of these downbeat times seems to vary. It’s as if every burst of normality has to be paid for the following week. They have definitely been a persistent problem for Terry over the pandemic, which exacerbated physical and mental challenges for everyone. But  perhaps we’re not doing too badly here. It’s a human instinct to compare experiences. Our neighbours variously complain of annodominitis (!) and ‘bungalow legs.’ We’ve all had two years of house arrest in which to contemplate our own four walls, and home improvements are a big thing.  We’re not immune (see photo gallery below). Many of our friends and neighbours are installing aids they expect to need sooner or later – variously, a walk-in bath, a better shower, handrails. People ask have we not thought of a stairlift, or even one of these new Star Trek-style jobs that beam you upstairs from a corner of your sitting room or hall. The short answer is that if it becomes necessary, we will, but why add bungalow legs to chronic weakness? Our local builder shakes his head. ‘Fit people move into a bungalow and then they seize up.’ In my old job we called this ‘acquired helplessness’.

Perhaps more insidious than post-stroke fatigue has been the feeling that nothing’s happening. In Doctor Zhivago, Boris Pasternak writes that nobody makes history; the movement of history is invisible, in the same way you can’t see the grass growing. In our personal history, nothing may have happened, but the grass has definitely grown here in the last year. Everyone has had a lot of personal stuff to come to terms with, whether or not they were completely aware of it at the time. I think of 2021 as a year of hard ‘inner’ work for us two, dealing with grief and a series of anxieties.  There was also a lot of what people call ‘life laundry.’ Many people had a much worse time than us. None of our anxieties were in themselves serious. There were no major health scares,  just a chronic inability to schedule anything or get any sense out of any public body.  ‘Because of Covid’ settled down as a catch-all excuse for poor or non-existent service, didn’t it?  Terry channelled his inner Victor Meldrew when dealing with haplessness from DVLA,  and showed heroic tenacity pursuing a grant application which was alternately on/off  month by month; it took many months to get the old heating system replaced; there seemed nothing but barriers to our attempts to travel to visit family; and it’s only with distance I can see just how much of a drain this living in a constant state of uncertainty was.  

So I think what I’m trying to say to those who are living with brain injury is, don’t beat yourself up if your mojo disappeared down the back of the sofa. The same goes for  the rest of us. Let’s see the situation for what it is, and not get so hung up on the things that didn’t happen, or happened all wrong, that we forget how to face the front.

When at last my choir resumed rehearsals in the autumn, my voice had shrivelled up. After being a choral singer all my life, it hurt to sing, besides being painful to listen to! I thought that was it: I’d just got too old. It took a while for the penny to drop that the problem was a physical one, and sure enough the chiropractor diagnosed tension in the jaw. It had just crept up on me. Which makes you wonder: how many people, emerging from a long period of restrictions and difficulties, are carrying tension in one part of the body or another?  We all need to do ourselves the favour of noticing. After treatment, help from my YouTube singing gurus, and practice, the voice has come back; and it’s come back stronger because I’m taking better care. I came perilously close to giving up singing altogether; but it’s been back to  Bach motets in the Abbey again, no less.  The moral is, treat yourself to a little self-care.

In the gallery below are some photos which, in hindsight, represent our modest achievements over the last few months. An achievement is something that only exists in the past. Until you get there, it’s possibly an aim, a dream, but mostly an effort. Stuff you’ve got to shift. 

First, though, there’s one thing that has to be acknowledged. Grozny, Aleppo, Afghanistan, now Ukraine. If Terry and I in our comfortable home have found living with uncertainty so unexpectedly draining, how must it feel to be at the mercy of distant, cruel and capricious powers, to fear for your life and be truly uncertain what the next moment with bring? There’s something every one of us can do to help, and it’s good to see that most people have quickly worked out what that small thing is, and are doing it.  

 

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Old filing cabinet in skip
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