Archive for March, 2011

I’m tired. Not tired in the sense of exhausted, tired as in I’m losing my resolve.

My thesaurus suggests synonyms for resolve are “determination, steadfastness, tenacity, doggedness, firmness”. Well, I reckon I’ve had those attributes all my life, for better or for worse. And, for better, that’s what’s got me mobile, as well as keeping me sane for the last seventeen years. What’s the opposite of resolve? My thesaurus suggests “indecision”, but I’ve not become indecisive. It’s more like I’m in danger of losing my way, literally losing “my way”. My way of steadfastly sticking to my regimen of exercise and stretching.
Oh, I still do it all, but the effort! I’m tired of the effort needed to do stretches every night, every morning. Rationally I know that I have to stretch often – to avoid spasm, to be able to stand up straight, to walk, to manage pain …

And there’s the seed of an explanation for losing my resolve. Pain has been a major driver in doing regular exercise and stretches. Or rather, removing pain, at least temporarily. Much of my pain is managed now, after seventeen years of trying various meds.  Instead of feeling triumphant over pain, I’ve been feeling a completely irrational level of despondency, accompanied by a reluctance to stretch, especially at night when I want to read, or do something other than stretching. Yet my continued mobility and pain management relies upon stretching. It’s not as if I don’t have other tools to motivate – humour can help you rise above any trial; exercise improves posture, alignment, provides objective measurements of progress, reduces spasm and pain, and yields endorphins; helping others; doing acts of kindness; smiling. All give wonderful positive feedback. So where was my Self?

Then a friend, completely out of the blue, sent me a link to a site that reflected exactly my state of mind.  So two things happened at once. I identified why I was feeling as if I was losing my way, and in reading some very wise words I had permission to feel that way.

And so I found my resolve … As if it were lurking under the bed, or in a cupboard. And so it was, in a manner of speaking. The answer was lurking on the Internet, in the kindness of a friend, and in my own mind.

So today I went for a long walk, sat reading in the sun, and did some stretches. I feel great!

Here is an excerpt from Jen Lemen’s  “Love Will Find You Out” for anyone else that this might help:

“It’s okay to hope against hope.
This is not a time to be reasonable or rational.
Run, run as fast as you can against the tide that is crashing down now.
When the last wave sweeps over you
and every hope has been dashed
You will still be here, right here
and you will not be sorry you tried to make all your sorrows disappear.

It’s okay to cry.
Even if you are a man. Even if you are a mother. Even if you feel each tear
as an accusation against your strength, your resolve, your natural equilibrium.
Cry in the car. Cry in the shower.
Cry in bed when no one is listening or looking.
Cry when you kiss the kids goodbye for school.
Cry when you do the dishes.
Berate yourself for not being able to get it together
and then cry anyway.
How else will you know you lived, if not for these tears
reminding you were not made of metal, wood or steel
after all?”


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Ok, hand controls are not, strictly speaking, around home. But they are probably the single most important item that enables me to be mobile and independent. I don’t know how I would live without my hand controls. Seriously, I don’t know how I would live without them.

Hand controls are fitted to my car and enable me to accelerate and brake without using pedals. Ever wondered how people with limited or no leg function can drive? Lots of people assume we can’t. An automatic vehicle takes care of not being able to use a clutch, and hand controls let us control the speed of a car.

Last week I drove solo to Auckland for the weekend. Just me (and my hand controls) and my music … and a new tic … This time the spasm caused my right hip to flex, taking my right leg into the air and me with it, then down to the ground. No problem when I was driving, but as soon as I stood up and took a step … woohoo, I was on the ground. Crutches couldn’t save me, nothing could. I had to stretch the hip flexors before I could walk, but I had to walk somewhere so I could stretch my hip flexors. Something of a conundrum. This new tic trick was also, for a fleeting microsecond, an excruciatingly sharp pain.It started to get me down until I heard Nina Simone sing “Ain’t Got No” :

Ain’t got no home, ain’t got no shoes
Ain’t got no money, ain’t got no class
Ain’t got no skirts, ain’t got no sweater
Ain’t got no perfume, ain’t got no beer
Ain’t got no man

Ain’t got no mother, ain’t got no culture
Ain’t got no friends, ain’t got no schooling
Ain’t got no love, ain’t got no name
Ain’t got no ticket, ain’t got no token
Ain’t got no God

What about God?
Why am I alive anyway?
Yeah, what about God?
Nobody can take away

I got my hair, I got my head
I got my brains, I got my ears
I got my eyes, I got my nose
I got my mouth, I got my smile
I got my tongue, I got my chin
I got my neck, I got my boobs

I got my heart, I got my soul
I got my back, I got my sex
I got my arms, I got my hands
I got my fingers, Got my legs
I got my feet, I got my toes
I got my liver, Got my blood

I’ve got life , I’ve got my freedom
I’ve got the life

And I’m gonna keep it
I’ve got the life
And nobody’s gonna take it away
I’ve got the life

That thought got me a long way. I was still smiling as my new tic sent me sprawling in the middle of the lobby of the hotel where everyone who works there knows my husband by name!

I have a confession to make. The next day I was determined to get on top of this spasm, so I went to walk along St Helier’s Bay. I was approached by a middle aged man who was very pleasant and interesting and we chatted for a while. He suggested he pray with me. I’ve strong views against this, but for some reason I felt comfortable accepting this. I would even go so far as to say I felt humbled when he commanded the pain in my leg to go. I’m not sure what happened … maybe it was coincidence, maybe it was all in my mind. It’s easy to be cynical, it’s harder to take a leap of faith. All I know is that I’ve not experienced the pain or that spasm since.

This doesn’t mean that I’ve changed my views about people who want to pray over me. But somewhere out there is a man with whom I felt comfortable chatting and who, for a few minutes, I trusted to pray with. And that really bad pain has gone.

And I had to drive to Auckland to meet him! And to drive to Auckland I needed my completely indispensable hand controls!

By the way. I could live in Auckland. It’s warm there – I can go outside knowing I’ll be warm in just a t-shirt and shorts. I can live with the traffic, the high house prices – I like being warm. I like being warm.

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Strange how when you take a look at an issue it suddenly seems to pop up elsewhere.  Just a few days after I wrote “Labels are for jars not people” I read that architect Russel Walden has described me and my neighbours as “middle- class conformist rednecks” (Oh, Futuna Your Weekend March 12 2011) because we live in Futuna Close.  So Walden labels us without knowing anything about us (other than where we live).

Some background: The area was once a Catholic retreat and includes the Futuna chapel, awarded a gold medal from the New Zealand Institute of Architects. The retreat was sold to a developer who was apparently going to demolish the chapel until fortunately it was listed as a heritage building. Residents of Futuna Close can enjoy the beauty of the chapel every time we look out a window, step onto a deck or drive past it. We, and others are privileged to benefit from the restoration of the chapel.

The author of the article, Diana Dekker, writes “Futuna sits, still needing care, in the architecturally claustrophobic landscape of as many townhouses as could be squashed onto the site. The residents love them. Some architects hate them.” (My emphasis) Presumably some don’t hate them.

There are at least three issues here. One shows yet again that labels are based on ignorance, intolerance and prejudice, and are used to forcefully present a narrow minded opinion as fact. Another issue is that the article is a biased piece of reporting that makes no attempt to explore any views other than the one the writer has. The article was published to co-incide with the chapel’s 50th anniversary so perhaps the writer thought that something contentious might help promote it?  No excuse for poor journalism. She overlooks the controversy over a design that led to leaking and high maintenance costs, one of the reasons the Catholic church sold it.   Which leads to the third issue, the credibility of some architects who value style over substance.

In case you’re wondering, that like any sensible middle class conformist, I worry about property values, I don’t. For the first time I’ve found a home I like living in and selling isn’t on my to do list. The development has opened the whole area so that the public can appreciate the chapel from the street and can walk around the outside of it. Previously only the tip of the chapel roof could be seen from the street and I doubt that many people dared to walk into the retreat to see any more. Many people didn’t know the chapel existed until the area was developed. The more people come to see Futuna, the more the development can be appreciated for the remarkable achievement of use of space, and compatibility with its environment. There is access to our private native bush that provides a beautiful backdrop to the town houses which in turn blend in with the surroundings. Giant rimu stand in gardens breaking up the potential blandness of roads that give access to houses. Ferns, cabbage trees and other plants have been preserved and break up the lines of the houses and help create open vistas. The natural stream running through Futuna is delightful. The developer employed a gardener who over several years built a nursery of mostly native plants to ultimately surround each set of townhouses, and to add to the established areas of bush. He was an interesting character who planted according to the phases of the moon and was absolutely committed, not to landscaping, but to creating something natural. The bush and mature trees conceal an astonishing sixty six town houses. Passers-by see maybe a dozen or so, visitors see a few more, but nobody comes close to realising how successfully the developer designed the layout, tricking the eye by grouping some designs in three or so, and using different designs that blend together and complement the physical surroundings.

I’ve never seen a development like this anywhere in New Zealand. Perhaps because it is unique it has attracted all sorts. Some are middle class, if that means having average status, education, tastes and income. Some may be conformist, although if conformist means conforming to accepted behaviour or established behaviour, the very act of living somewhere so unique might suggest not. There have been a few rednecks here, if redneck means narrow, prejudiced, reactionary. They haven’t lasted long because to live in this sort of environment requires a spirit of  co-operation, an ability to compromise, empathy and an ability to share common spaces. I don’t know what middle class is in New Zealand but I live opposite a truck driver, teacher, antiques dealer, sales manager, and along from a judge, and down from a partner in a law firm, and a group of young lifeguards who work at the local swimming pool. Behind me lives an artist who, with her husband, raised twelve foster children as well as their own three children. Our neighbours include a family made up of grandmother, mother, teenage son and niece; another made up of a couple, the wife’s daughter and her son; some are older people living on their own, or, like us, couples; there are teenagers, babies, young children; there are Chinese, Dutch, Sri Lankan, English, Australian, American, Korean, Maori and other ethnicities. Our delightful neighbour and his flamboyant friends would laugh at being described as conformists.

The label “middle- class conformist rednecks” is intended as an insult and likely grounded in Walden’s anger that his vision is not shared by others. The label demonstrates his ignorance of how people might choose to live rather than be told, his intolerance of the views of others, and prejudice that only architects can design living spaces.

I’d like people to see for themselves that it isn’t an “…architecturally claustrophobic landscape of as many townhouses as could be squashed onto the site.” It’s a good example of a builder sensitively developing a unique physical environment within the constraints of  financial viability and providing affordable attractive housing.  As well as blending the houses into their environment the builder has cleverly maximised the spaces within each house so that some have as many as four bedrooms and two bathrooms.  And here’s the real rub – Futuna Close was developed by a builder who worked with engineers and others to build stylish and functional homes.

Too often architects place style above functionality and the results can be catastrophic for the owners. Take “leaky homes” for which architects who designed them blame builders and materials, leaving ratepayers and taxpayers to pick up the bill for the architects disregard for function. Monolithic cladding, recessed windows, roofs with narrow or no eaves, solid balustrades, complex roof design and envelope shapes where roofs frequently intersect with walls on upper floors, enclosed or concealed gutters are all design features introduced by architects with total disregard for our weather and the environment in which we live.

Futuna chapel was designed by architect John Scott who also designed other churches. The chapel leaks; it’s always leaked. So have the other churches. The chapel has internal gutters. The most striking feature of the chapel are the stained glass “windows” (designed by an artist) which are actually plastic and have faded over time and will continue to fade. It seems to me that a lot of architectural design in New Zealand is for the immediate gratification of the architect with little regard for longevity. Materials rot, or fade, the architects deny responsibility.

Contrast that with a builder who has for years built solid, lasting homes that function well for the people living in them, and who consults experts like engineers, to make sure that drainage and roading will work effectively.

Mr Walden can throw a tantrum and call us names but that won’t change who we are, the popularity of the development, or that others can appreciate the beauty of the chapel in its new environment, even if he can’t.

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The use of labels to describe someone has irked me for some time. I would variously describe myself as womanly, paraplaegic, mother, christian, feminist, humanist, able … the list has changed over the years and I expect will change again.  Some labels seem to be mutually exclusive. Priorities change. Meanings change over time. Perceptions change. We are complex.

I don’t know about others, but I don’t want to be put in a box. I prefer to describe myself in terms of ideals I aspire to, be they noble, frivolous, challenging, or simply time wasting. For one thing the label on the box can mean different things to different people; for another, labels can lead to intolerance, stereotypes, and narrow thinking. Conversely, prejudice, intolerance and bigotry thrives on labels.

If you think this is trite consider this link sent to me by a friend. It’s a cute/tragic post about a five year old boy’s choice of Halloween costume and the absolutely appalling reactions to it. Nerdy Apple Bottom writes in “My Son is Gay”

My son is gay. Or he’s not. I don’t care. He is still my son. And he is 5. And I am his mother. and if  you have a problem with anything mentioned above, I don’t want to know you.”

If you haven’t read this post I suggest you do so now. Read the epilogue too. Her story made me mad, but it also inspired me. I admire and respect her principled and loving stand. If you need any further encouragement to read this post take a look at what she is standing up for:

(I hope that Nerdy Apple Bottom doesn’t mind my reproducing the photo of her son here.)

When did gender stereotyping become an issue for little kids? Why would you want to label a child gay, or use sexuality as a label for a child? One of my sons, when he was three years old, used to stand beside me when I was putting on my make up and practise putting on lipstick. Now that he’s twenty eight perhaps he borrows his wife’s lipstick. I didn’t care then, and I don’t care now because he’s always been a funny, loving, delightful, kid, popular with his peers and those around him because he’s so positive and cheerful. My other son used to like wearing pink, he probably still does. He used to collect and play with soft toys. He liked teddy bears. He probably still does. This caring loving kid has become a killer litigator… a label that he’d probably like, but he has lots of other attributes and he’d be just as proud if he were described as a caring socialist.

It’s not particularly helpful to use an occupation as a label either, although in social situations, often the first question people ask is “So, what do you do?”  I’m a lawyer, cleaner, teacher, public servant, secretary, house husband, musician, accountant … only promotes stereotypes. Why do we want to put people in boxes?

I think that labels get in the way of freedom – freedom to choose who we are, to make choices, to be independent and individual. That’s why I prefer to describe myself in terms of the ideals I aspire to. Freedom to choose and to be autonomous are feminist qualities I promote and aspire to, but I wouldn’t call myself a feminist. The idea of loving others as I love myself is one I fervently believe in; it is at the core of christianity but if I call myself a christian I am likely to be grouped with the judgemental, intolerant “christians” of Nerdy Apple Bottom’s church school, the evil, corrupt “Bush fundamentalists” (christian fundamentalist – now there’s an oxymoron!), or the excessively pious self-indulgent preachers who want to pray over me. Not to mention hypocritical religious clergy. (Who deserve a rant in a separate blog)

Even those things that I am passionate about – freedom of speech, human rights, my children, being creative – can only describe part of who I am. I admire the strength and power with which Nerdy Apple Bottom defended her son’s choice. I hope that I have been as good a mother as she is. But I am many things, and I’d rather not be labelled by any of them.

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“A Tribute”

Joan Crowther

12 April 1919 – 10 March 2010

Elegant, glamorous, courageous

I don’t know if there is a heaven but I do believe that the spirit or soul lives on in the memories of people whose lives were touched in some way. My mother passed away a year ago and hardly a day goes by when I don’t think of the ways in which she taught me to have confidence, self-esteem and self-respect. Her accounts of her childhood and journey to who she became fill me with admiration and I know my own children, listening her stories and spending time with her, respected and loved her too.

I hope to write more about Joan, and her mother, Maud, so that their stories and their spirits live on for our family and others. Everybody’s mother is special but the courage and dignity and determination with which Joan faced life are inspirational.

I shall mark today by going to the hairdresser because Joan took great pride in her appearance, and by driving round Wellington Harbour because she believed it to be the most beautiful place in the world.

Karen’s waiata

The Rose

Some say love it is a river
that drowns the tender reed
Some say love it is a razor
that leaves your soul to bleed

Some say love it is a hunger
an endless aching need
I say love it is a flower
and you it’s only seed

It’s the heart afraid of breaking
that never learns to dance
It’s the dream afraid of wakingthat never takes the chance
It’s the one who won’t be taken
who cannot seem to give
and the soul afraid of dying that never learns to live

When the night has been too lonely
and the road has been too long
and you think that love is only
for the lucky and the strong
Just remember in the winter far beneath the bitter snows
lies the seed
that with the sun’s love
in the spring
becomes the rose.

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In some ways camping when you have limited physical mobility is similar to childbirth.  Hauling yourself around on your knees or your elbows in a confined space, dressing yourself while lying down either on a bouncy air bed or the hard ground, putting your shoes on every time you need to go outside yet unable to reach your feet, being super careful not to let your sticks slip on the floor of the ablutions block, struggling to pull yourself from the ground to the air bed just four inches higher, trying to sit on the ground knowing that your upper body will topple over as soon as you take your weight off your hands … everything is so damn exhausting you wonder why you put yourself here and swear you’ll not do it again. Then you wake up as the sky is lightening, you hear the dawn chorus (and remember why it’s called a chorus), smell the fresh clean air that smells all the better because there’s only a few microns of nylon between you and it.  You lie on the floor of the tent with the flap open and you gaze up at the clear night sky where you can see millions of stars. And it’s worth all the effort.

This time camping became a collaborative effort.  I had to swallow my pride and accept that I needed help.  Climbing those few inches from the ground to the airbed  took too much energy I needed for other things, so my husband pulled me up from under my arms, then pulled me down by my ankles … undignified but effective. I let him run round after me while I lay on the rug by the tent reading in the sun … not so bad. He picked up after me while I slipped (figuratively) into the swimming pool to cool off … nice. I sat reading in the sun while he put the tent up, then I sat in the car keeping dry while he packed the tent away in the pouring rain.

Still, it was hard work and now I’m home I feel like I need a rest but that’s not possible. I need to keep moving, keep stretching, walk a little, exercise a little, not sit too long, not stay in one position too long, although that’s a small price to pay to  stay mobile, to stay upright and to walk.

This may have been the last time I can live in a tent for a few days … but then camping for me is a little like childbirth …


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