Times they are changing
My daughter is now sixteen years old, a fact which gives me considerable pause. I have spent much time over the last two decades doing things for the family I am blessed to have around me. But have I used that as my excuse to not do things for myself? Probably.
There must be many people in my position, who surround themselves with details and preoccupations that put them at several removes from the concerns and convictions nearest their hearts. So how do we get back to the things we really, really want to do, instead of staying half-heartedly with those things we think we ought to do first?

I am guessing that most of us will wait until our kids have grown up, and we have a lot of time and space, before we sit back and reflect, remembering what we enjoyed doing before parenthood came along. We’ve all heard about the ‘empty nest’ syndrome, which apparently leaves parents bereft without their usual caring role.
With that in mind – I’ve done a lot of intense grieving these last few years and it is hard work – I have been letting my daughter leave me gradually, mourning and celebrating her passages into youth and adulthood in the small rituals with which growing up is sprinkled: the first time she walked to school by herself; the first time she went to town alone on the bus; the first time she was away for the weekend with a school party…
With suitable safeguards and many sage warnings, these small moments when I realised, “She can manage without me, now,” have paved the way for the recognition that I must honour her freedom – and the rest of my life – by now being meaningfully busy with my own projects. That I can do.
Thanks for listening.
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July 30, 2019
Applying for PIP
Fran Macilvey cerebral palsy, Fran Macilvey, Fran's School of Hard Knocks 4 Comments
Applying for PIP
“Pip” is the working title of my third novel. it is also the TLA for “Personal Independence Payment”, a benefit which replaces DLA which is now being discontinued.
And so, finally, two days before the Summer holidays begin, the notification from the DWP arrived informing me that my DLA award is being reviewed, and so now I need to think about applying for PIP. I don’t have to apply, of course. I could draw a veil over my private difficulties, hand back my motor vehicle and resign myself to an even more indoorsy kind of life. However, under the current scheme I qualify for a car, and if I would like to keep running it, I have to make the attempt, and so I will. Instant flare-up of stress eczema.
I know – I know – that everything is somehow working its way out, but despite my faith and my determination to stay calm and happy – if I get upset, “the system” wins twice – stress fractures begin to appear, at first invisible and then more defined – a brittle cheerfulness that takes teasing too seriously; a paralysis that means I look to my husband for what to say, and how. More falls and staggers, a growing sense of futility and sorrow. Nightmares. Memories that assault me. Arguments with my husband that leap up out of no-where. I weep at the prospect of having to expose my intimate failures to the scrutiny of strangers who ask me, “How bad is your condition?” Having been so private and self-reliant, it upsets me to place all this information in the public gaze…
Meanwhile, there is comfort in continuing to do what I have always done, despite the concern and the renewed worry about the future, and being tired all the time. If I cannot keep my car, I may be able to afford another, but… I remember how it felt, before: the constant fatigue which frayed all my certainties to shreds. I am chary of a system that requires me to revisit all my painful compromises with forensic attention to details, which, in any case, are constantly changing.
~ Sure, I fall onto toilet seats and am periodically incontinent. Do you have to know that?
~ Yes, of course we do…
Systems that gather information with an undisclosed purpose to be sceptical and interrogatory, imply, perhaps without intending to, that applicants are exaggerating or untrustworthy. But I have worked, and continue to work hard, at all manner of quiet details with which the government takes no notice: caring, housekeeping, being aware of what needs done and doing it as best I can. In all that, I crawl when I cannot walk; which is a private indignity that I would prefer to keep to myself.
Since it seems I no longer have the option of keeping such things private, I share them with you here, in the hope that others may take some comfort from the evidence of my weaknesses: because we all have to deal with indignities, which say nothing about who we really are.
Thanks for listening.
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