Do people forget?
By now, I’ve been intimately involved with my mother’s affairs for several years. And whereas even members of my family will say on occasion, “It’s just to collect Mum’s meds, she’s just out of hospital!” or “It’s only one day, what’s the problem?” I can’t help feeling an ache and exhaustion in my bones, nor can I escape the regret of knowing that doing any physical task – let alone tasks for my mother that have become loaded with worry, regret and sorrow – takes me three times as much energy as for someone who walks easily, who can stroll at the run twice as fast as I stagger, and who doesn’t have to worry about falling off pavements and such like. For me, there are no longer any ‘simple’ things.
Do people forget to see that? In the midst of others’ busy lives, I find that my very real limitations impede their expectations of what I will do for them. Even my nearest and dearest sometimes appear to be oblivious to my exhaustion. But though I’m still here, still working, I have finally begun to accept that the end result of continuing to work as I have done, navigating and dealing with constant demands and a shifting landscape of imperatives and semi-disasters, for me will be complete physical and emotional collapse.
I have no wish to go down that route. So, as a first priority, I have to do what I can to set my own agenda and stick with it. Faced with seemingly endless and tiring jobs to manage for other people, this is the only answer I can summon: I must do first what I need to do, and the rest will have to be dealt with by others, or simply not dealt with. Any and various disasters that crop up will either have to be endured, allowed to languish, or sorted out, and not always by me. It’s what we planned for in any case: no-where has it ever been writ, or stated, that I am my mother’s physical carer, or that I am available for her every beck and call.
In recognition of that, I have to truly begin to accept my limitations and step back, so that, little by little, I can reassert my right to make choices which, though they may not always be the best, are at least my own.
My mother will approve of my desire to reassert my freedom in what is, after all, my own life.
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October 6, 2021
Busy doing nothing
Fran Macilvey 'Trapped: My Life with Cerebral Palsy', cerebral palsy, Fran's School of Hard Knocks 2 Comments
Busy doing nothing
I used to ascribe my almost legendary ability to sit still, to a simple – or perhaps, not so simple – realisation of the physical effort of getting a life.
If, as I do believe, it takes me a lot of energy to do a thing, that tends to mitigate against doing it. Thus, I have spent a lot of my time doing little except either reading about other peoples’ exciting lives, or worse, watching other people doing things.
Perhaps there is another factor at play.
My family, and especially my parents, were and are opinionated. That is, generally, a good thing; and nothing new. My mother however, has also been and remains, incredibly contrary. So, I share a family joke that goes,
Fran: Mum, you realise you contradict everything I say.
Mum: No I don’t! That’s’ just not true…
And I notice afresh how often what I say will be met with contradiction. For example, if Mum has had a good night’s rest, she will say she doesn’t need or want night-time carers. Conversely, if there were no night-time carers in place she will just as easily complain of having had a bad time of it, and that the long watches of the night are dreadful to endure alone… It may well be that the progress of her illness exacerbates an existing underlying trend, so that what was previously accepted as the sometimes-amusing quirk of a contrary nature now becomes glaringly obvious.
But in the particular context of what this means for my own behaviour, I have to conclude firstly, that – well, yes! – if one grows up knowing that whatever one says or does will meet with criticism or contradiction, one learns it is best to do and say as little as possible; and secondly, if I don’t wish to replicate that pattern of learned uselessness in anyone else, I must never criticise anyone, nor comment too forcefully on what they choose to do.
After all, I do know, intimately, how hard it is to do anything when one is watched with eagle-eyed interest, and one’s every action and utterance is subjected to pointed comment. It’s only recently that I have realised that (a) it wouldn’t matter what I chose to do, the response would be the same; (b) it’s a habit so ingrained that it’s totally not personal; therefore (c) not only may I follow my own path, but I must do so.
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