Kingfisher

Last week we spent a day staying with friends in the next street - escaping the sounds of chainsaws next door.  In the afternoon, a flash of movement caught my eye.  My subconscious promptly identified the bird that settled on the neighbouring roof as a kingfisher; my conscious mind was doubtful.  Surely kingfishers don't have such stunning irridescent plumage?!  Then it turned and showed me its distinctive beak.  No doubt about it: the bird was definitely a kingfisher!

It was a wonder to behold.  I know I only felt that way because my life is so restricted and because it's years since I saw my last kingfisher.  But that doesn't make it any less of a wonder :-)

image source

Ten years on

Last Monday was the 10th anniversary of my developing CFS.

It was a curious day.  Leading up to it I was very aware of it looming ahead of me, and yet whenever I tried to think about what the day meant to me I couldn't: my mind shied away from the topic.

I sincerely believe that I have a remarkably good quality of life, despite my illness.  In may ways, I'm pleased to be ten years down the track.  Those early days were so scary and baffling; these days I'm mostly dealing with the familiar.

And yet I do so wish life was different.

I grieve for the lost possibilities - especially for the children I most likely will never have.  I'm sick of hurting all the time, of rarely having the mental energy to have a decent conversation, of having to push through mud every move I make, of failing to understand so much of what I hear.  I'm sick of having to be so disciplined.  I'm sick of feeling exhausted all the time. I miss human company and generally being out and about in the world.  I so wish I had a body and a mind that worked.

And I wish it was more OK to say these things.


I recently listened to a radio programme about the new Disability Studies course being offered at Otago University.  As the lecturer talked about negative stereotypes people have about disability, I came to think that she was conflating two quite different things: statements/acts that suggest people with disabilities are of little value and statements/acts that suggest that life with a disability is harder than life without one.  For example, she thought it was bad that people had sent sympathy cards to the parents of a baby born with Downs Syndrome.  But what is wrong with coming alongside parents in their grief at the loss of the kind of future they'd imagined for their child?  That child is likely to have a much more difficult path through life than their peers - both because of their disability and because of society's attitude to it - and I wish it was more acceptable to say so!

Sadly, in the church people with disabilities experience another kind of pressure that again makes it hard for us to acknowledge how hard our lives are.   The church doesn't enjoin us to feel good about our disabilities but it does exert considerable pressure on us to endure them cheerfully - to be like Cousin Helen in the What Katy Did books, rather than like Katy herself in the early months after her accident.


So, on this anniversary, I wanted to tell some of the bits of my story I don't often tell: the bits about how hard it is, rather than the bits about how, on balance, it's OK.  I guess the fact that I'm posting this nearly a week after the actual anniversary tells part of that story, too,  It's hard having a head that takes more than a week to put ideas together coherently, and fingers that struggle to type, even when I am using my mouse-typing programme...

Holiday in Whangarei

Martin and I have just got home from a week in Whangarei visitng his parents.  I made it on one outing there: to the A.H. Reed Memorial Park - a patch of forest that includes a boardwalk up near the tree canopy!  It was lovely being there.  Martin also went on a few walks with Dad, including up their local hill - Parahaki.

Photos of those outings, as well as a few from around the house, are up on flickr.  There's also a kind of panorama from the canopy boardwalk here.  If you click on the photo it'll scan around the panorama, but using the mouse you can also look up to the sky and down to the ground.  That was Martin's first go using the fancy panorama feature on his new phone :-)

Incidentally, I remain quite stunned at how well I'm doing since I started taking the ribose back in August.  I've recently reduced my dose (standard advice is that you should do this after about 4 weeks but it was never the right time for me to do this until a week or two back...) and my energy levels have still remained high.  At least, high for me, that is!

Kiwi cards

I made the above cards yesterday for a couple of overseas friends.  I'm really pleased with them :-)

The desire to be heard

I've just listened to the BBC documentary Voices from the Ghetto, in which Polish Jews describe their daily lives in the Warsaw ghetto during World War II.  It's a sad account of what people can do to other people, but also a striking example of the strength of the human desire to be heard: to know that others know that you exist.

The texts read by actors in the documentary are a tiny fraction of the systematic records left by Jews of ghetto: recorded by individuals, copied in triplicate by a typing pool and periodically buried in metal cans to (hopefully) be found by posterity.  Such committment to the telling of their story!

In a funny way, it reminds me of Facebook.^*  Why else do people record the minutiae of their lives (or, indeed, post increasingly outrageous pictures of themselves) if not from a longing to be seen and heard?  They may not have such a terrible or important story to tell but still, I hear echoes between the two in that common desire to be seen, heard and known.

^* or, at least, Facebook as stereotypically used by teenagers...

The greatest commandment

A recent post on Paul Windsor's blog referred back to his 2008 reflections on David Kinnaman's book Unchurched.  According to research from The Barna Group, non-church-going American 16-29 year-olds perceive the Church as:

1.  too hypocritical;
2.  too focused on getting converts (outsiders 'feel like targets rather than people' p29);
3. too antihomosexual (for a staggering 91% of respondents - as 'hostility towards gays has become virtually synonymous with Christian faith' p92);
4. too sheltered ('Christians seem aloof and insulated', p124);
5. too political ('a movement that was bursting with energy to spread good news to people 20 years ago - has been exchanged for an aggressive political strategy that demonises segments of society', p153);
6. too judgmental. 

The thing that strikes me about Paul's list?  When outsiders look at us, they feel our hate.^*

It reminds me of my Saturday morning walks to my local Farmers Market when I lived in Pittsburgh.  En route, I passed by an abortion clinic.  A Christian group regularly picketed that clinic and aggressively accosted anyone they suspected might be trying to get to it.  I so hated the intimidating manner of the people who accosted me that sometimes I walked a much longer way around just to avoid them.  In no way did I get the impression that these were people who cared about me or my (possible!) unborn child: I just felt that they wanted to obstruct and oppose me and I wanted to get away.

It makes me really sad.

^* see points 3., 6., probably 5. and, to an extent, 2.

Manaiakalani Trust

There was a short piece on Radio New Zealand National this afternoon about the Manaiakalani Trust: an organisation that Hapara (where Martin now works) work with.  They make it possible for kids in a group of very poor schools in Auckland to have access to their own computers, and then use various forms of e-learning to help the kids catch up to their educational year-level and beyond!  It seems like the systems Hapara is developing really could give kids like those Martin grew up alongside in Thailand opportunities a bit more like those that his Kiwi connections gave him :-)