Urban Fathers' Liberation Front

Confused dads working out the city

From a Carer

Originally published on www.headwaynorthlondon.blogspot.com

I was sorting out some electronic files on my PC at home last night, and I came across some pictures of my first wife.  She died nearly five years ago now, having succumbed to a brain tumour.  There aren’t many days that go by that I don’t spend at least a moment thinking about the eight years she had with that lump in her head and not only thinking about her as a person but the process we went through during that time.

Conversely, I don’t spend any time trawling through photographs that were taken during her last couple of years, but they are on my PC, kept for a reason I don’t really understand and cannot express, but the sight of them was shocking. 

She was a perfectly happy, open, care-free, friendly person, and an experienced and well-liked teacher of 32 when she had the first epileptic seizure in 2000, which threw her out of bed at six in the morning.  She’d had migraines in the past, and the following couple of years saw her going in and out of hospital for monitoring, scans and tests.  At this time, the experts suspected that the brain scans were showing a ‘benign cyst’, but continued tumour growth and persistent niggling problems with aches and odd thoughts and visions lead to a biopsy in 2003 which diagnosed a grade 2 astrocytoma deep in the right side of the brain.

With the biopsy came brain injury; with that came growing uncertainties, decreasing self confidence, worry about upcoming appointments and scans, and concern that the normal we’d had was never going to be recaptured.  But, we had hope that it would.  Even when the headaches became intolerable, the neck movements more difficult and the sight marginally reduced, we felt that surgery to remove as much of the tumour as possible would see us return to a quieter life.  It was the end of March 2005.

Surgery and chemotherapy saw her eyesight become worse and her short term memory affected.  The medical response to this was to try to deal with the loss of sight and loss of memory as separate problems whereas the reliance on learning new techniques for overcoming sight loss and the reliance on visual cues to overcome memory loss meant they were intrinsically related.  Having had to give up work and having had her life catastrophically altered, there were also issues around self-esteem and self worth that needed to be managed; new social networks needed to be formed and new ways of stimulating her intellectually and creatively had to be found.  These issues were all related to the person, not issues to be managed independently from each other.

We found Headway by accident in early 2006.  In retrospect it was too late – we could have done with them about three years earlier – but Headway House offered a place to go, to be with other people similarly affected by brain injury, to socialise, to blog and to use the computer, to talk about her issues, to be creative and to see places that she otherwise wouldn’t get to.  As the burden of care increasingly fell on me as I tried to maintain full time employment as well, Headway also offered a secure place where I did not need to worry about her and offered support for my needs as well.

In the end, the disease progressed and worsened, with complications and unpredictability, meaning that a residential home was the only viable solution for her needs.  Whilst she no longer attended Headway House, the friends she’d made there continued to support us through to her passing in 2008.  The photos I was looking through show the transformation from a bright, glowing, vital young woman to a frail, terrified, damaged person who tried very hard to smile and be positive in the face of devastating changes to what was a promising life.

I’ve tried to move on too, but after five years I remain haunted by it.  It doesn’t dominate me, but it hides in the dark parts of my mind, raising itself in low moments and clinging onto events, songs, images, smells that will take me back to some point in that terrible journey.  The only real light from that whole period was the warmth of Headway; it was only they who really understood the comprehensive and strategic needs of a brain injured person, and they battled hard to find what she needed. 

I know that the charity finds it hard all over the country to get to those people with brain injury – a hidden disease that the sufferers themselves may not know they have and GPs often miss or mistake for something more tangible.  I don’t know what the answer is, but supporting your local branch is the simplest way to ensure that they can get the resources they need to find the people and to give them support.  Why not seek out yours?

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Does your kid really need an iPad?

IMG_5291I’m an aspiring journalist, and I have been for years, but despite recently completing a couple of courses, and writing as much as I can for this blog, I think that the dream will always be a little out of reach.  I have, however, signed up to various mailing lists in order to attract possible articles and as a result I get no end of perky PR agencies sending me emails as though they are long lost friends wanting to catch up with me and make my day perfect.  Beyond the faux friendly introductions and the chirpy language, there’s ordinarily some terrible, zeitgeisty, of the moment fashion crap they want to tell me about which, as a cynical old Luddite, is wasted on me.

My usual response is to swiftly hit the delete button or, if I’m feeling particularly energetic, I write back and tell them to delete me from their list.  Sometimes I even put my name, but even that is wasting precious seconds of my life on them (clearly, the journalistic career is doomed).    However, the gradual build up of mindless press release on mindless press release is attritional, and it was inevitable that one day I’d have to write back and tell them that their product sucked.

This particular product was a ‘digital activity pack’ for kids which is aimed at ‘entertaining children while they’re travelling on the plane to Lapland’, which seemed like a very niche market to me (and probably a very affluent niche market).  The pack would contain things like, ‘Dot to Dot’, ‘Spot the Difference’ or ‘How to Make a Hot Chocolate’.

Oh dear.  I’ve long been frustrated by the apparent progression of our society.  Progress is indeed inevitable, but that’s not to say that it’s necessarily good.  It seems that we are hell-bent on going digital despite it’s many, many problems: the expense of hardware; the speed of innovation, which makes recent purchases instantly obsolete; the inability of less well off people to access digital products; the contributions that this inequality make to bullying, peer pressure and petty crime; the expectation that anything can be had quickly, easily and cheaply, if not for free and the longer term infrastructure issues such as whether we can actually cope with the exponential increases in the use of digital data in terms of transfer, storage and protection.

But the point here is children’s education.  I’m really not sure of the merits of giving a digital activity pack – and I’m assuming here that this means some kind of download on a tablet or similar – to a kid on a long flight.  I know that many adults are conditioned to look at screens all day and feel pretty miserable about it, but that’s no reason to make kids do the same.  The activities mentioned by the press release are standard features of the average kids magazine (although anyone is going to be hard pushed to follow a hot chocolate recipe on a plane) and a simple pencil and paper – apart from being many times simpler, cheaper, more accessible and more readily understood by a child – would seem to imply to me a little more interaction between child and parent.  Any parent should be preparing for a long flight with lots of things for the family to do and not relying on plonking a screen in front of them and telling them to get on with it.  My head spins with the direction implied in even considering that a screen is an adequate response to seeing a child through a long flight.

My own daughter starts school this week, and in touring schools prior to shortlisting, the use of IT, iPads and computers was a key concern of ours.  Our kids see us using these things and copy; and they learn fast.  But my childhood was full of playing in the street, mixing with the other kids on the road of many ages, making dens in the local field, playing football and cricket, climbing over building sites and through empty buildings, taking the knocks and the grazes and learning to be independent.  Today I see parents keeping their kids in, moaning about paedophiles, never letting them go to the park on their own or with their friends, afraid to play in the street, afraid to kick a ball because the neighbours are worried about damage to their wing mirror, traffic too dense and too fast to allow kids to be outside.  They’re unwittingly being forced inside, towards these screens and we’re just happy to watch it happen.  Even the schools say they want to maximise time away from IT, but are introducing iPads to the classroom without a policy on how much time is appropriate for their use.

Naturally, I don’t have an answer for this, and I suspect there isn’t one but we do seem to be slipping comatose into world where children are increasingly detached from society, where some parents clearly think that giving them a digital activity pack is a good thing and where the kids don’t actually have the ability, confidence or opportunity to ask questions, interact and become rounded adults.  As a parent, it’s a real worry.

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The Atheist and the God Shaped Hole

IMG_7909For some time, I’ve considered myself to be an atheist, and have happily talked about this fact in polite society.  In truth, I’ve never been that bothered about the principle of a set of (religious) rules to guide life, my experiences of church and religion in my childhood years being neither uplifting or off-putting.  I suppose my atheism dates back to reading Richard Dawkins’ ‘The God Delusion,’ which kind of put a stamp on how I felt about it, if I had to feel anything, and in the intervening years, I’ve felt comforted by the knowledge that many of those in the public eye that I’m drawn to or enjoy are also non-believers or proclaimed atheists.

Of course, this also has the effect of confirming ones beliefs rather than challenging them, but I have become concerned that Dawkins’ approach to the subject is as extreme as some of the religious fundamentalists and fanatics that he purports to object to – I suppose I find aggressive atheism as offensive in it’s preachy, fixed and unwavering opinions as aggressive theism.  In a changing world, nothing can be more certain than uncertainty – I’m repelled by the idea that aggressive theists and atheists can be so certain.  I’ve also been concerned, in the back of my mind, that atheism overlooks to some extent spirituality, which I do believe in, even though it is no more tangible than the existence of a deity.

This internal struggle in my own mind came to a head recently whilst reading one of two books I’d received for my birthday in June.  I’ve enjoyed watching and listening to David Mitchell – comedian, not novelist – for some time, particularly his posh bloke posturing against archetypal northern bloke Lee Mack on Would I Lie to You?  His autobiographical book, ‘Back Story,’ designed also to relieve his back pain, is a lively and meandering read.  As well as dismissing the Mitchell/Mack jousting as an act (in real life, both will favour Carluccios over Pizza Hut), he declares that he is agnostic, not atheist, because whilst he does not believe in a God, he can’t prove one doesn’t exist either.  The problem I’ve always had with agnosticism is that it appears to be indifference, but I have some sympathy with Mitchell’s position, enough to question my own atheism.

The second of the two birthday books was Michael Foley’s ‘Embracing the Ordinary’ which I’d been drawn to because it sought to champion the everyday; I’ve been attempting to bring attention to the mundane but wondrous and intimate detail all around us in the series of photo images I’ve been working on over the last two years, London Letters.  I anticipated a fairly light read, but Foley’s book has been challenging, drawing principally on the work of Marcel Proust and James Joyce, neither of whom I have read or am likely to read, and throwing in a lot of neuroscience for good measure.

However, in a well written 15 or so pages, Foley talks of the current Western viewpoint of a single supreme being having created the universe from nothing and the acceptance of the scriptures as fact (along with the infallibility of the Pope in the Catholic religion) as 19th century interpretations that have become embedded today.  This is distant from the way in which people would have used religious teaching used in the times before then – it was never a being, but ‘being’; process, meditation, epiphany.  Our contemporary mistake, he believes, is to consider the position as it is today as the position it has always been, which is not correct.  He further also argues that recent decades have eroded mystery and meaning in favour of materialism, which in itself has given rise to fundamentalism, which claims to be based upon authentic tradition.

Foley himself was an atheist, but struggled with a ‘God-shaped hole’ in his life.  He’s tossing this around in his own mind (and why not; he clearly believes Alison Gopnik’s assertion that successful theorising is as good as a sexual high) and is moving towards an interpretation of life’s meaning.  For him, this means seeking to appreciate the here and now through his own Holy Trinity of the ‘imaginative, comic and spiritual’ that is found in the apparently mundane and meaningless everyday that surrounds us, and that most of us take absolutely for granted.  It’s another position I have sympathy with.

And so, with the same will to (ahem) toss, and the same certainty in uncertainty, I battle my God-shaped hole, searching for my own position on that stuff we can never know.  Whilst I need to finish ‘Embracing the Ordinary’ (and, I think, learn from it) next up is Karen Armstrong’s, ‘The Case for God‘.  Never has something that I thought meant so little meant so much.

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