Tuesday, 22 July 2014

my Field of Dreams moment

I would like to think of myself as a mostly good-ish person.  Not perfect but, you know, mostly good-ish.  Not, you know, all the time, but most of it.  And then I was in a situation earlier today that ... well, actually, I'll start by explaining my mostly good-ish-ness, so that perhaps I will make some kind of sense.  Or perhaps not.  It's been that sort of day.

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I subscribe to a loose system of faith based on human kindness - vague allocations of karma points are involved, as are wooly pseudo-theories such as what comes around will go around - fingers crossed anyway.  I truly believe that if everyone just cared a bit more, the world would be a better place ... Pay It Forward, you know? (incredible book by the way, highly recommended whether or not you've seen the film - after all, most films struggle to do justice to their literary counterparts).  This uplifting belief in the strength and power of a united focus is tempered on a regular basis by recognising the inexplicible damage that people can do to one another, both physically and emotionally.

With this in mind, I try to help.  Sometimes someone specific, more often the system as a whole, but I try and be good-ish.  Mostly.  I know - it sounds trite, but that's the way it goes together in my mind.  So, here are some of my good-ish practices, with apologies for any sickening sweetness (but don't worry, my grumpy self steps in at the end, and stamps her foot and everything)

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I rarely say things for the sole purpose of confusing or upsetting other people, and if do then I feel hugely guilty about it afterwards, and tend to overcompensate.

I give blood, or at least I did until they decided they didn't want my blood anymore, what with the Brain Cloud and everything.

I say please and thank you and often tell people that their hair looks fab, or that their child is just gorgeous, or ask their opinion on the book they're reading, or ask where they got that tattoo.  Not necessarily always strictly the truth, not necessarily of great personal interest to me, but always with the intent of engendering a genuine feeling of pride and positivity in the complimentee.

I've okay-ed blood being taken from Smiler to use for research purposes, every time they've been taking some for some other actually-connected-to-his-wellbeing reason.  I've also given blood myself for these slightly mysterious research purposes when asked, and I'm definitely not getting anything out of it!

We've had medical students visit at home and school two or three times a year, every year, to talk about raising a child with a disability, answering their questions honestly, and sharing our thoughts on whatever topic is the current top trend  from prenatal testing to the financial implications of a disabled child to the emotional toll a child with complex health needs can have on a relationship.

When I was in hospital on the neuro wards I agreed to be poked and proded by the students, even though I was in a lot of pain and answering their questions did not help in the slightest, the opposite in fact - going over and over the presenting symptoms was incredibly draining.  But they're only going to learn by doing, and although I was not at all a happy bunny I was also aware that there were plenty of people around sicker than me.

Petal and I raise money every year for Bristol Hospitals - bake cakes, decorate cakes, sell cakes, rinse, repeat.  Over £500 raised over two years, and trust me when I say that is a whole lotta cakes and biscuits and flapjacks.

I'm involved at various levels with trying to improve services for disabled children and their families in Bristol.  I read reports, attend training, make notes, provide feedback, go to meetings, talk to parent carers, support other parents, draft emails, carry out research - all under the general umbrella of improving services.

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I'm not trying to label myself as some sort of holier-than-thou martyr here - I do get something out of all these things, particularly if you subscribe to the Joey Tribbiani (vs Phoebe Buffay) school of thought which holds that there can be no unselfish deeds, as even if you seem have nothing to gain then in performing an apparently entirely altruistic act you benefit from the sense of satisfaction received.

But earlier today I was in a meeting where I had entirely unsuccessfully tried to balance those competing interests of participation for the greater good and a specific situation with my Smiler.  After behaving with a distinct lack of grace I reentered the room (don't ask), having caught my breath and decided that the most important focus was working together with service big cheeses on the issues at hand.  Big picture Lucas, big picture.

A short while later a comment was made that even if by our forays into uncharted service provision and organisation we suceed little other than to have made the path an easier one to tread for the next parent to come along when my mind began to reverberate with comments made by Kevin Costner.  No, I wasn't slipping into some kind of manic state, a middle aged housewife getting my knickers in a knot over the Postman, but instead sharing a moment of intense frustration and selfishness at a world that sometimes has the gall to demand so so much from us and give so very very little in return, and have the blithe insensitivity to expect us to be satisfied with our lot.

Do you know that Kevin Costner film, Field of Dreams?  I should point out that this wasn't supposed to be a tour of my brain as it links to the American film and tv industry, but hey, sometimes you start out and you're not really sure where you're going to end up.  You remember the bit where Ray Kinsella (Costner) gets angry with Shoeless Joe Jackson (Ray Liota) and shouts about how he's done all these things, all that had been asked of him, and never once asked 'what's in it for me?', and Jackson says "So what are you saying?", and Kinsella replies "What's in it for me?!"

I've spent twelve years doing what's asked of me, routinely going a step further by trying to be mostly good-ish and use the skills that I have to improve services in Bristol, to make things better for families, and now I want to know... 
What's in it for me?

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Brilliant blog posts on

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1 comment:

  1. You are good and are doing great things, improving lives-I think we all feel frustrated at times and it sounds like you need to do more good things for yourself-start by writing a plan of action-goals you want to achieve professionally and personally and work towards those where possible, also I would say take time out for you, a day of nurturing you, doing what makes you happy. It's so easy to put everyone first but in looking after yourself you are helping everyone else. Thanks for linking up to #brilliantblogposts


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