When I let go of all the needs, wants, plans and expectations, one thing remains still to be acknowledged and resolved. In all this “working for myself” gig, there has been – there is – one obsession that pushes at me, and that at the same time almost guarantees that I shall either feel unhappy or as if I have failed.
It is the feeling – the belief – that there is something that I should or could be doing that I am not doing. Some path that I have not walked, some obvious answer I have not found, some way forward that I have overlooked. Only glimpsed until now, this is the belief that makes me anxious or fretful: that I have been given a job to do in which I am failing.
I can notice where this fear comes from – perfectionism, the fear of not being good enough, and also of trying to keep up with others. To give an example, “they” might go to a book fair for three days of networking and mutual back slapping as they meet, walk and talk up and down the escalators. I assume I want to do that too, not for the anxious busyness or the caffeine drive, but for the sense of belonging. That old feeling of yearning transmutes into a feeling that, if I really wanted something enough, I could work for it. So, if I don’t get what I dream for, that’s because I’m slow, lazy, not good enough…
And then I remember that Life – which has brought me this far and which continues to care for me – will, in its way, bring me naturally to what comes next. I can – ok, I must – stop running to catch up. I can invite what comes next by being first peaceful, and then by choosing a path – any path – and walking it.
Finally, I remember that it matters little which path I choose. Like the plastic duck that never drowns and that travels thousands of miles without trying, life still has a way of righting itself, as long as I can stay optimistic and happy.
For years now – well over a decade – I’ve had a dream of how I thought my dreams would turn out. Too personal to articulate clearly, I’ve seen in these dreams my varying paths to “success”, “happiness” and all the other achievements we want for ourselves. Who among us does not see that in our dreams?
But instead of a light, colourful anticipation, my wishes have hardened into something akin to an obsession. Instead of loving these dreams into existence, a compulsion has me in thrall. And meantime, my time has passed me by too quickly. Not without results, outcomes, ideas and considerable progress; though never quite what I have hoped for.
Immersed in the dream, I have missed so much colour, action, love; all the things I thought the dreams might bring me. Instead of which, its grip has kept much of what I sought – intimacy, adventure and joy – at bay.
So I’m letting dreams go: releasing them from the cage of my expectations. I know that if the hope is to return to me, it will do so in its own way and its own time. I cannot force the future to be what I want it to be, nor what I expect. I can only keep faith and hope for the best.
We all keep our dreams alive, but not by caging them. They will come back to us if they are meant to. Otherwise, the best we can do for them and for ourselves is to release and get on with loving ourselves better.
Did you ever feel like the
class buffoon, because you said the things or asked the questions that everyone
else was thinking? I did, and ended up feeling singled out, not always because of
my obvious impairments. Kids are surprisingly perceptive, and often saw me as I
was, rather than how I thought I looked.
I did, and do, have unusual priorities, many of which are still being shaped today by “older” expectations: to be good, be no bother, be easy to get along with, be amenable. These expectations are remarkably pacific and keep me sitting. In with the mix, there have also grown newer expectations shaped by being a wife – be thoughtful, think before you speak, don’t judge – and a mother – be kind, listen first, then speak, hold back on that ol’ judgement, because often you forget that younger folk see things more charitably than you do.
But mixed in with those expectations which I could label as “being careful” a whole new bunch has become clearer to me since lately becoming obsessed with “Supernanny” and picking up some of Jo’s parenting tips. Nothing I could point the finger at, particularly, just a feeling that life is too valuable and precious to sit around here all day “being good” and thus failing to live my life to the full and enjoy it as much as I can. There may be limits on what I can do, but many of these can be overcome, and are imposed on me by my own sense of inadequacy.
I have Jo to thank for demonstrating that I can, and should, get out more, see more and do more. It seems to me today, that the best advice I can give myself now is to get out there and experiment with living more actively. It’s no good expecting the world to turn up at my doorstep. I have to take my world outside, where people can meet it.
So much has been happening –
and not a lot of it to do with work – that I feel now is a good time to remind
myself of what my priorities are.
I’ve had my PIP assessment at home, which went well. Whatever happens next, I feel that I was listened to and heard, and that the assessor was fair and kind. More than that, none of us can expect. And, as it turns out, she was quite able to accept that problems can be difficult to understand, let alone talk about. It’s not as if I’m the first person who has ever been assessed, and I won’t be the last. At some time or other, anyone in receipt of state-sponsored assistance has to be assessed, so I took the opportunity to explain, later marvelling that I have so rarely had that opportunity: from the procedures that were sanctioned on me and over my head when I was young, to the orthopaedic consultant who suggested I try wearing high heeled shoes, it has felt as if I have been “done unto” for ever. Nice to be heard, for a change. I await the decision.
I spent eighteen hours last
week, sorting out my passwords, internet accounts and Paypal, as I was hacked
by a single spam link which I clicked on… I should have known better, but I’ve
been lucky, with no major hassles or dramas, except the idea, at one point,
that my internet business account had been deleted. It hadn’t, it was merely
locked, but it gave me a few restless hours. Please be vigilant with passwords,
logging in and out of accounts, and with keeping stuff up to date. And please,
if in doubt, delete spam emails and report them.
I fell again last week, narrowly averting a mangle that could have been noisy, difficult and messy, and accomplished with surprising elegance and luck when I landed and sat back hard on my left wrist. But it was a stupid fall nevertheless, which hurts and is sending out aches and pains all over my left side, my shoulder and neck. Impact falls of this type start with a small site that, as it heals, radiates pain. And of course, a good swim would help, but I’m cagey, having so recently fallen…
I’m still writing, currently
hoping to finish a working draft of Pip by October. If my characters
keep talking to me, I hope that will work out.
Thanks to Emma Crees, Writer in a Wheelchair for giving me, over the years, occasion to think about ableism and me.
And in all honesty, I haven’t, much, except in relation to the obvious political footballs: austerity, poverty, dearth of ambition. But, in much the same way as our current social expectation is geared towards masculinity – football all weekend, failing which rugby, tennis, golf, or beach volleyball – for the women – and that contradiction, the blonde, female sports rapporteur – much able-ism goes under the radar, or is simply accepted, tolerated and excused.
But here’s the thing: Why?
In my faith community – to which, I regret, I am now a rare visitor – I have made two requests to help that have stood out in my mind. The first, to wash dishes, was very politely refused because, I was told, the kitchen would be very busy and they needed someone who could carry dishes from the washer and stack them, carry plates and so forth. The implication being that I would make more work for them instead of helping them, and therefore, it would be better if I did not get involved.
The second occasion was when I
asked, “What I would have to do to qualify for an in-house shift at one of the
larger Quaker centres?” The kind of shifts in which it is expected that members
staying for a week to assist with the hospitality, will act in a welcoming,
sharing capacity, helping visitors to feel at ease. It was suggested that, since
the friend in residence would be expected to carry suitcases, perhaps it would
not suit me. After I got home, I wrote to query this, and received no reply.
So, is “Health and Safety” now
to be used to exclude persons who wish to participate? I fully recognise that,
if I ask to “help” in areas where it is more usual for the able-bodied to do so,
it is probable that someone else may need to help me to help them. So, am I therefore
to be excluded from giving my ha’penny worth? That seems a trifle harsh.
It is hard – sometimes very hard – for a person with impairments to get up any enthusiasm for joining in. Not only is the able-bodied world peculiarly blind to the challenges faced by those with impairments – “It’s self-service, just fetch a plate and come along…” – but it can be difficult to leave the small comfort zone of passivity that those of us with impairments have marked out for ourselves. A comfort zone which, if I am typical, is made up of equal parts of consolation and despair: Not very life enhancing.
So, joining in, and feeling encouraged to join in, will be exceptionally life-enhancing to one whose usual world is four walls of a room, the bleak car-park or the limitations of a predictable, supermarket shop. Given the sheer appreciation and delight we feel when being encouraged to participate, do organisations that encourage volunteering not see the value in a buddying system that encourages that? Or is that hope of extra care deluded and unhelpful?
It does seem to me that “inclusion” must embrace all sorts and abilities, even if that means making an extra effort for that to be possible. If we are to have an accurate reflection of what “society” means we must encourage those of us who are reluctant to leave their living-rooms to get outside and live a little.
I got the date for my PIP assessment, today Wednesday the 14th of August.
If this had kicked off last year, I would have said, “That’s my Summer holiday thoroughly ruined”, but there is some stubborn-ness in me that refuses to give anyone that satisfaction. Just because I have to do this now, when we are supposed to be outside and tanning ourselves, having barbeques and swimming in the lake, does not mean I will descend into a worry fest. Why should I? I plan to have a great life, and that includes now, because what else matters, really, in the final analysis?
There is a great deal said these days about those who feel hard done by. And yes, for swathes of our poor, vulnerable and lonely citizens the system is really not working very well, it is stretched to breaking, and broken, in many places, badly patched. For many, many people the daily grind goes no-where near addressing their basic needs; and, since destitution is not something I shall have to face any time soon, I’m grateful, and intend to make the most of all my chances, today, tomorrow and every day.
But… – why is there always a but? – the rules in this particular system appear to be arbitrary, made up with no end in view except to further curtail the ability of those with mixed abilities, to participate. There is no real logic behind the “twenty metre rule” or the broad definition of “to mobilize”. I am informed by ATOS that someone is coming to my apartment today to see “how my disability affects me” – but really, that’s not it. They are coming to see how far I fall within parameters that they work to, and whether they think I am justified in getting additional help with my needs: all surprisingly subjective.
And that is particularly hard to explain when I find it hard to understand, when I am prone to saying, “I’m fine thanks!” even when I’m in a lot of pain and covered in mud; and when it pains me – with an almost physical ache – to enumerate the ways in which I find it difficult to do what I want to do. The gap between what I aspire to, and what I can reasonably manage is increasingly obvious, and makes me, on my bad days, want to – to end – this crux of compromising.
None of which is self pity. But there are shards of despair in there that I dare not look at too closely.
Following my previous post, I have also cause to reflect, again, that a memoir cannot cover every aspect of a life. Not only would our attempt to cover “everything” make of a memoir an encyclopaedia, but naturally, the scrutiny of a memoir covers certain periods, and stops at certain natural points. Beyond these points of departure, our lives can change, and flourish beyond recognition.
In my memoir, for example, I reflect on every young girl’s dreams of being included, being loved, part of a carefree community of those who enjoy life. I talk about certain on-going traumas that affect people with my abilities – the assumptions, for example, that we will do what we are asked, that we should never be a nuisance, that we should be inconspicuous and no trouble, and, above all, never embarrass anyone. (Can others embarrass us? Well, yes, that is fairly routine.)
“Trapped” also explores some myths of mainstreaming that we all face at some points in our lives. If only you will be good, if only you will work hard and make us proud of you, the myth whispers, you too, can have all that we have: friends, family, a wonderful job, meaningful occupation, a fantastic, fulfillingly amazing emotional life… And, as anyone will tell you, it ain’t necessarily so. We all fall down, at times. We fail exams, we break up relationships, we may even become homeless or destitute. But the common thread in all these low points is that – in more ways than we are usually aware – we are the same. We all have stories to tell, and lessons to learn. And in that, we are, and can always be, bigger than the sum of our parts.
Here’s a new idea that I saw voiced on a FB thread recently. That it is rich
– and I paraphrase – for a memoir writer to complain about breaches of
privacy.
The imposition on online users of various extra security rules and requirements, for example, being asked to supply our phone number for extra security, or told we “must” download our banking app onto our mobile phone, seems to be becoming more widespread. These extra security measures sound harmless enough: if we are in France our holiday, say, and we attempt to log in to Facebook, there are times when we will be blocked from doing so. I assume that the mega computers are suspicious that we are not ourselves, and we are therefore asked to supply extra data for verification before we can access our accounts. (At least I now know what “Please add your phone number for extra security” is all about. I have not and will not give out my phone number. And so, I won’t use on-line networks when away from my usual domicile.)
However, I started this blog post to probe one suggestion made, that it is rich – and I paraphrase – for a memoir writer to complain about breaches of privacy.
Huh?? Memoir writers are people with lives that go well beyond the content of a memoir or even a confessional, weekly newspaper column. And if we write sensitively, no-one else we mention in our memoirs – and other people usually feature tangentially – should not come off too badly. I change names, alter circumstances, and in any case, my recall is often at variance with that of others, which acts as a natural, protective barrier around our personal lives. “What? I don’t remember that!!” is not simply about perspectives: it places our recall at a remove which ultimately, is like a safety valve.
I think, I suppose, probably, that the assumption made, that memoir writers have no expectation of privacy, has two parts. First, that memoir writers have already laid their lives out for public scrutiny, and therefore, they are used to it, expect it, and have somehow forfeited their rights to privacy. Second, that they – I am supposing – have already made reference to the lives of others in, I am supposing, a rather presumptuous fashion and therefore, have a bit of a cheek supposing that they should be entitled to privacy when those they write about have been “outed”.
Both these assumptions are questionable at best. Memoirs are often an attempt by writers to make sense of chaotic or baffling circumstances. They are an attempt to join with others in understanding, to reach out and console, and to get beyond first base and live better lives. That all seems very useful and worthwhile to me, and doesn’t lend me to suppose that memoir writers have skin like rhinos or are uniquely tough and open-all-hours type of people.
I hear from readers quite often, writing to me and talking about having read Trapped. Typically a message will begin, “Hi, I’m Andrea, I’m 27 and I have cp. I read your book and…”
Which makes me wonder. Some
readers want to write, and ask for advice about that. And I would say, if the
first thing you identify about yourself is that you have CP – or any kind of
impairment – then yes, you do need to write, if only to get that narrative out
of your system.
For decades, my intro line
was, “Hi, I’m Fran, I’m X years old and I have CP.” But really, identifying
what might be the main challenge in your life as essentially You, is a bit
limiting. I have CP, yes, but it no longer defines me, or limits me. The sense
of having limitations is odd, relying as much on other people’s ideas of what
is possible, as my own. And, I choose not to see myself like that anymore,
because to do so is unnecessary and unhelpful.
I’m Fran, I am fifty-four and I have blue eyes; dark blue, almost teal, with a ring of brown around the iris. I like singing, so much so that even at my age, I do so unselfconsciously only dimly aware that other people consider this eccentric. I sing along to music in the supermarkets, because there seems no reason not to: it’s the kind of thing that other people would do, if only they had the nerve.
I’m Fran, I’m fifty-four, and I’m a carer. I care for my family, and for my mother, and I care about the environment. At the moment, four large men – or is it five? – are trimming back the trees at the bottom of the hill at the back of our garden, and I have wept, because I love those trees, which, for me, are a precious glimpse of wildness in the city. I love those trees for being a refuge, for whistling when the wind blows, for being solid and optimistic, and for growing with branches extended wide. And for being taller and bigger than me. For being unfathomable and private to many creatures I will never see. For being faithful, for believing that growth is good and life is sacred.
As for having an impairment… What is that? Is it, as the social model of disability would have me believe, something that I really should be able to ignore? I’d like to, but actually, trying to ignore it is like trying to ignore the elephant in the room…
So instead, I try to make friends with the elephant and listen to what it might be trying to tell me. Often, I might chance a ride on its shoulders, from where I have the most amazing view of life. It’s a metaphor I prefer to play with, rather than push against. And, if we are playing with this particular metaphor, it might be an expensive thing, that hints at a grander life, needing a bigger space to play in. I love those trees because they were elephant sized, and expanded my sense of what I was. Looking up at them, I forgot about having an impairment.
Thank you for listening, and have a wonderful summer vacation.
Whether I am drawn to writing self-help, science fiction or fiction, for me, there is nothing more fundamental than writing honestly. Not brutally, but endeavouring always to be clear about my motives and what I am trying to say.
It is through writing honestly that the conviction forms in me that can lead to convincing writing, authentic dialogue, heartfelt emotions. For each genre the disciplines will naturally differ, but without core honesty – which perhaps I could call freedom of expression – I find my writing withers and loses its purpose.
We write for a number of reasons:-
– To learn about something or to gain empathy. This drove me to write my memoir. – To earn money and make a living: an honest and worthy motive, which helps us to be clear what parts of our material might appeal to others and thus bring commercial success. – As an outlet for personal or artistic expression. For joy, for hope, writing has its purest justification, one which is often at risk of being downplayed, particularly by writers who are dismissive of what they bring to the writing table.
But whatever our motivation, it seems to me that our writing can only take root and flower if it is an honest reflection of our lives and experiences. Naturally we hope to emulate writers we admire – how else can we refine our own style? – but though imitation may be the sincerest form of flattery, flattery, almost by definition, flirts with the truth. I do adore flattery… – I’m sure I’m not alone – but when the chips are down, I find that gently offered truth is more valuable.
November 11, 2019
When I Let Go
Fran Macilvey 'Trapped: My Life with Cerebral Palsy', cerebral palsy, Fran's School of Hard Knocks, Happiness Matters, Making Miracles 8 Comments
When I let go
When I let go of all the needs, wants, plans and expectations, one thing remains still to be acknowledged and resolved. In all this “working for myself” gig, there has been – there is – one obsession that pushes at me, and that at the same time almost guarantees that I shall either feel unhappy or as if I have failed.
It is the feeling – the belief – that there is something that I should or could be doing that I am not doing. Some path that I have not walked, some obvious answer I have not found, some way forward that I have overlooked. Only glimpsed until now, this is the belief that makes me anxious or fretful: that I have been given a job to do in which I am failing.
I can notice where this fear comes from – perfectionism, the fear of not being good enough, and also of trying to keep up with others. To give an example, “they” might go to a book fair for three days of networking and mutual back slapping as they meet, walk and talk up and down the escalators. I assume I want to do that too, not for the anxious busyness or the caffeine drive, but for the sense of belonging. That old feeling of yearning transmutes into a feeling that, if I really wanted something enough, I could work for it. So, if I don’t get what I dream for, that’s because I’m slow, lazy, not good enough…
And then I remember that Life – which has brought me this far and which continues to care for me – will, in its way, bring me naturally to what comes next. I can – ok, I must – stop running to catch up. I can invite what comes next by being first peaceful, and then by choosing a path – any path – and walking it.
Finally, I remember that it matters little which path I choose. Like the plastic duck that never drowns and that travels thousands of miles without trying, life still has a way of righting itself, as long as I can stay optimistic and happy.
Thanks for listening.
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