Sunday, March 08, 2015

Respite


The evening was wonderful. The little show that Helen Perris put on as part of her Pozible album-crowdfunding campaign was a treat. Thanks, Helen.

When I got home and into bed last night, Ms T felt too warm. It passed, but you'll understand that given her suppressed immune system, fever is a constant threat. The last fever landed her in hospital.

This, I hope, will partly explain my reluctance – resistance – to being separated from her, a feeling I guess other carers might share, or at least understand.

So why was I out of the house?

For some months, the women in my life – Ms T and someone I've called “Sarah” in this blog – have been lobbying me about taking a break. They talk about “respite”, and we've talked for months about what form that might take.

That's why I was at Helen's concert, rather than at home: Ms T learned it was happening and sent me out of the house, brooking no argument when I began getting cold feet.

My fear of a fever should be enough to explain my reluctance, but it's not.

There's also that which terrifies me to think, let alone to type. “Respite” has an undercurrent, an echo of the future reaching back to chill me. It's a rehearsal of the future I fear, the reason I cling so tightly, the day when I go somewhere alone because I must.

Other carers, I hope, will understand: “Can't you take a break?” – “No”, because we're superstitious that mere absence will bring a crisis, that we're fearful that the crisis isn't next year, but now.

That the words “taking a break” feel like the beginning of the longest break of all.

“Taking a break” means breaking a link to the past and life that once defined Ms T and I.

Across the road from The Newsagency is the Victoria on the Park, where our elder son danced in Ms T's womb while I worked the desk for early-90s Sydney bands and we would taxi home at 2am to sleep until midday on Sunday. A pang of nostalgia is surely to be expected.

I loved the performance, and I managed to keep my tears and my fears to myself. There was no crisis, and this morning's breakfast pancakes look nearly perfect.

Perhaps respite will do me good; I just wish it didn't hurt so badly.

Helen Perris at The Newsagency



Wednesday, February 18, 2015

Your love will be hard, and I'm the bastard who says so

Mel*, we only know each other on Twitter, and I already know how it's going to be.

I really hate being the bastard who says that, when there's going to be an optimistic chorus spouting bullshit and promising that positive thought can defeat disease.

Optimism is seductive and necessary, but so is truth.

The thing is, as you've already discovered, the kind of mind that produces the up-vibe “I will survive!” literature that infests our world, seems to think that chronic and sometimes terminal illness can be slotted in right next to supermarket tampon ad images.

I'm the bastard with my greatest love's Death Note next to my life and my heart. I sympathise even as I hold my dearest against the future. She understand and redirects her tears to you.

We understand that the photos in the hospital literature lie; we know that the glorious promises embodied in steel and glass and genes and research and money will save lives and families – in the future, but not our own.

We resent how it turns out – but that's resentment of life and circumstance. Not of people.

You, like Ms T, are a patient, not an abstract. You've just had your future invaded by the blitzkrieg of diagnosis; a genie reached out a hand and tore your life's to-do list to confetti.

There will be days you cry. You will weep and rage, and at times you'll fly off the handle at those you cling to.

And I'm the bastard who says this. It's so bloody hard: you cannot hold your place in the saddle when the lance strikes your breastbone.

You don't forfeit love because you lose your rag sometimes. We on the receiving end know that you're only releasing a couple of colts from a whole herd of horses, stampeding over your life, health, ambitions, hopes, plans, love, and future.

It hurts to be on the receiving end. I know: Ms T hurts me terribly at times, and sometimes I flare, but the storms always subside.

Our sons have been bloody rocks. The elder was in his HSC year when the maelstrom descended; this year he qualified for honours, and wants to pursue the uncertain life of the scientist. He still will drop everything and sprint at the least word from Ms T, as will his brother.

We, the carers, we who fell in love: we still hold in our hearts and imaginations the beauty we once dared not touch. We loved, and we love.

Illness is merely a bane-companion. We who love are entangled; like photons, our hearts beat with the hearts of those we love, our state depends on your state, and our only wish is that across the long, empty spaces of the universe, you will return to us.


* @Dr_Mel_Thompson, with a recent MS diagnosis, gave me permission to use her real name. I appreciate her decision and honour her bravery.

Sunday, January 18, 2015

To hell with “diversity”: try not being a dick

As a framing for a debate, “diversity” is a disaster. I'd like to go back to calling prejudice and exclusion by their real names, and abandoning the “accentuate the positive” crap pop-psych.

Why? Because “diversity” is a fluffy term that lets the debate get framed by whoever is speaking.

After Linus Torvald's – whose work I admire, and whose personality is such that I wouldn't buy a beer to put out his hair if it was on fire – pratful keynote at Australia's Linux conference went all over the world, he “explained” himself to all who might listen. I link to Ars because the organ I work for, The Register, wasn't listening at the time.

Which is fine by me, because Linus' self-explanation looks at the problem from the wrong end:

"There's a lot of talk about gender and sexual preferences and race, but we're different in so many other ways, too” is how he tried to flick off the question of diversity.

There are two problems here: Linus' attitude, and the reduction of prejudice, exclusion and abuse to a question of “diversity”.

The two are conflated, because it's so easy to accept a particular framing of a question – or to exploit it, if you're cynical enough – and not question the framing.

My simple two-part answer to Linus and the whole world that uses weasel words:

Diversity” defines only who you include.

Prejudice” defines who you exclude.

I consider this an important distinction. There's no point in arguing “we're diverse because we include W and X”, if you're still prepared to accept that your community will exclude “Y and Z”.
There's no point in saying “we have a diverse community” if that “diverse” community will still pile on women, gays, Aborigines, or anyone else your “community” designates as an outsider.

And pleading “diversity” as an excuse to let yourself and those around you practice exclusion is exactly why I reject the “diversity” framing.

It's not about diversity, it's about not being a dick. 

Friday, January 16, 2015

Solar suppliers: get serious

I am a believer in solar power. I'm also an owner of solar power, and I run a business on it.

When I say “the supply side of the solar power industry in Australia is a sad joke”, I say it from a position of intimacy and dependency.

I'm not some right-wing nut-job trying to undermine the industry. I want it to work, and I'm not happy with carpet-baggers, snake-oilers, and passing profiteers stuffing it up.

I have spent a week trying to source critical equipment for fast delivery, on the Internet and on the phone, and I have failed utterly.

Last Friday, a lightning strike destroyed two 48V inverter-chargers at Bunjaree Cottages, which runs on solar power. Since then, apart from discussions with the insurer (Elders Insurance, which is handling things very well), I have been trying to find emergency replacements for the inverters.

The solar equipment supply-side in Australia is a joke.

My options are to buy cheap stuff from overseas with an uncertain delivery date; the same stuff from Australia marked up by multiples of its overseas price with a five-day delivery time; or high-quality like-for-like replacements from America with a two-week delivery time.

Not to mention the suppliers who promise call-backs and don't.

Not to mention that some of those companies won't provide prices online: they force you to phone them for prices, then they don't call back with the prices.

Not to mention the other companies that advertise products on Google, but won't actually provide the products unless you buy a whole system.

And so on.

Electricity is mission-critical for everybody, and for the solar industry to ignore this is plain stupid.

The utter lack of industry discipline means that everybody is left to do their own thing, and the suppliers do it badly with a casual disinterest in their customers' requirements.

When the requirement is “electricity”, that casual disinterest is going to bite the industry's arse, big-time.

I am not going to name individual companies, because frankly I have not found any solar supplier in Australia that gave a cube-root of stuff-all about the mission-critical nature of what it sells.

I would have happily paid a premium for next-day delivery of what I needed, and I could not even manage a same-day – oh, by now, same-week – quote. Which makes it impossible to finalise my insurance claim and actually get my solar power back online.


Don't bother recommending names to me: I've called or surfed them all, devoting about 20 hours in the last week to the task. I don't want your recommendations, because I've already seen them on Google, asked if they can deliver to my requirements, and been told “no”. 

There is a plaudit to be given. My Honda Eu6500 backup generator has run like a dream, 24x7. Thank heavens. 

Thursday, January 15, 2015

The abandoned copayment idea was stupid anyway

The assumption that distorted the government's frankly stupid and now abandoned position on copayment is that GP visits are (a) discretionary and (b) about poor people.

So I'll present a standing, constant and continuing inefficiency in the health system that demands “six minute medicine” and could be solved quite easily.

I won't reiterate Ms T's entire medical history: it's a chronic immune-system disorder that demands lots of specialists, lots of drugs (some nasty), and – pertinent to the GP copayment debate – lots of repetitive prescriptions.

It's the prescriptions that are relevant, because if your only reason to visit the GP is to knock off this week's list of new prescriptions, the visit will fall under the “six minute medicine” heading.

A typical exchange might be:

GP: “Hi, what do you need?”

Ms T: “Prednisone 5 mg and 1 mg. Ursofalc. Atenolol.”

GP: “I've read the letters from the specialists. Everything seems to be going well.” (While he's typing the prescription details and, if necessary, calling the PBS people for authority prescriptions like Ursofalc.)

And she's out the door.

Some of her medications can't be prescribed for more than a month, which means a minimum of 12 “six minute” appointments each year.

There's no point in him turning it into a long appointment to do “preventative medicine” things. She has seven specialists looking after her, three of them professors, and the GP is just a prescription-machine.

Oh, yes. With seven specialists, there's the other six-minute medicine thing that happens.

GP: “Hi, what do you need?”

Ms T: “My referral to X expired.”

GP: (writes new referral)

None of this actually needs the GP: all of these “six minute medicine” appointments are systematic. The rules demand a GP appointment, regardless of whether the GP has any agency in the outcome of the appointment.

Also: there are certain drugs whose rules limit their prescription duration to one month. For example, the pain patches that are replacing Ms T's former addiction to Endone.

There's a necessary 12 appointments per month. I don't disagree with the rules, but those 12 appointments aren't created by the patient, they're created by regulation.

If the regulations don't change, chronic patients and GPs live in a Venn diagram of routine drug prescription, controlled drug prescription, and specialist referrals.

Over to the government proposal: the idea of reducing GPs' rebate for all of these routine visits was plainly stupid or worse, deliberately malicious.

In either case it was inefficient, because it would encourage turning a routine brief “sign this” visit into something longer that would get a better rebate.


PS. A grand a year on GP copayments would pinch us, but not cripple us. But an awful lot of chronic patients are seriously poor, and I don't see why they should be punished for needing a new prescription. 

Sunday, November 30, 2014

A lyric. I wish I could sing.

Copyright Richard Chirgwin. Really. This is all my own work, and my brain imagines a tune that I can't sing. Brains are shit that way. As are voices, and skill on the guitar when your arthritic fingers fear a difficult chord. 

Child (a lyric without a song)

Should I decide that I
Don't like the rules of time,
Don't want to grow into,
Someone I never knew:

This happy haze would be
The perfect place for me.
If I could find the key,
Then I would never leave.

I am a child, I am a child.
I have denied
The march of time.
The years, the tears go rolling by.
They are not mine,
I am a child
(Inside).

Your skin is warming me.
This promise, we believe,
This universe will bend,
This hour will never end.

We'll shed these scales tonight.
Our skins will shine so bright,
We will out-glow the stars,
Become: supernovas.

I am a child, I am a child.
I have denied
The march of time.
The years, the tears go rolling by.
They are not mine,
I am a child.

We don't need your stinking “narrative”

When a political writer says “this is what the Abbott government needs to do to improve its standing”, they aren't saying “it should stop lying and abandon a policy agenda that stinks”.

They're saying “the government could persuade people it's not lying, if it would just listen to me.”

I dislike it when people refer to Canberra as “the Beltway” in imitation of America, but the word does fill a gap in Australia's political slang. There is, in Australia's politics as in America's, a kind of closed-circle-insiderness that the word encapsulates.

As Victoria kicks out one government and installs another, the political insiders are cranking up their word machines and telling us that the Abbott government failed Victoria because it's made a mess of its “messaging” over the ABC cuts and the $7 GP copayment.

The obsession of political commentators with “messaging” and “the narrative” is not the application of a disinterested academic abstraction to political debate: it's a deliberate use of language to serve a deliberate end.

That end is to protect the commentator's role as gatekeeper between the government and the governed. There is no policy so toxic, no lie so brazen, no self-interest so naked that it can't be sold – if only the people in charge of the government's “messaging” can find the right “narrative”.

“Get the messaging and narrative right”, the commentators are saying, “and we will praise you. Get the messaging and the narrative wrong, and we will curse you.”

The commentators – pretty much all of them – believe that as the true insiders, they deserve the power to direct our votes and dictate our outcomes. The government is “framing” the “narrative” badly, and that, in the commentators' imagination, is why people have been gathering ever since the March in March to protest the actions of the federal government.

Why push the narrative over the truth? Because the alternative is too horrible to contemplate: people are seeing politics for ourselves, without needing to view it through the prism of the columnist.

It doesn't take much effort to find a commentator writing that people have stopped listening to Tony Abbott, nor is it an effort to find the same thing written about Julia Gillard, Kevin Rudd or John Howard.

What if we are listening to the politicians, and deciding entirely without the commentators' help that a broken promise is a broken promise, that a lie is a lie, and that the “framing” doesn't matter a damn?

Australians are acutely aware of what politicians are saying to us: they're trying to lie their way out of broken promises. “No cuts to …” was unequivocal, and it doesn't matter which minister you send to stand on the tumbril and pronounce that they're not lying. “Framing” a lie in the “context” of a “narrative” makes you complicit in the lie.

We don't need the blather and bollocks to tell fact from fiction, truth from lie, or to have the political commentariat choosing our elections. We can do what we are doing: ignoring commentators trying to force-fit our understanding of facts into their framing, and make our own decisions.


Out of its political culture, Australia created a Beltway of insider journalists. That's who we stopped listening to. 

*I originally had a typo of indisderness for "insiderness". @ForrestGumpp from Twitter likes the former usage as symbolic of the narrative. I kind of agree!

Monday, November 24, 2014

The ABC: the partner-commentary of my life


About me and the ABC through the years:

1960s: The news programs I had to endure because of my parents.

1970s: I was getting a haircut when someone on the radio said firefighters were needed at Mount Bodington Hospital. I asked the hairdresser to finish quickly and went to one of the worst days of my life. The hospital was saved; someone at my high school died. The call had come over the ABC.

1980s: I tried for the last time to interest my father, raddled by Alzheimer's, in the cricket.

1990s: My wife listened to the “ball of the century” on the night our first son was born.

2001: The radio news woke me, but not Ms T, which meant I could warn her not to listen to the news or watch the television on 9/11.

2010: We listened to the ABC in the morning, as we always did, and were later sent to hospital to save Ms T's life.

2013: Bushfires again. This time, it wasn't a hospital in the line; I feared that my life and love, Bunjaree Cottages, would be in the cross-hairs. It wasn't, but I was the only person within 500 metres for most of a dreadful day, and the ABC told me what was happening, and a lot of things changed that day.

Forever: the voices on the radio in the car, from Sydney to Melbourne, to Broken Hill and Brisbane and beyond all of those.

So many of the biggest moments of my life – the things that change a person, not trivially but fundamentally – have been accompanied by the ABC.

I choose my father's death as example, not because of my admitted sentimentality, but because I can talk about poor, mad Stan without offending anybody or violating their trust in me.

In the late 80s, Dennis Lillee was still A Thing, but Stan was a wreck with Alzheimer's, a regular escapee from the hospital that bound him, and I? A reluctant visitor, it shames me to say. When he was at his best we maintained, at best, a hostile truce. We didn't like each other all that much, Dad and I.

That made hospital visits … awkward.

On the last visit, there was a one-day international, which Stan disapproved of. But it provided movement and colour on a TV, Lillee was still playing, and the radio in the ward was tuned to the ABC. So we managed a few words about the cricket.

I'd seen Lillee bowl at the SCG, so many years before, when Dad was fine and we caught the train to a test, and the transistor radio in his pocket provided a commentary to what I watched. The ABC again. Dad was sceptical about Lillee then, but he changed his mind.

And at the end of my father's life, here I was trying to talk about cricket, to drag him out of the Alzheimer's fog, to talk about anything because we didn't know how to talk to each other.

And the ABC talked in the background to my father's farewell. “I know what's happening to me. Don't think I don't. Don't come back.”

And 27 years later, the ABC commentated the worst day of my life, and its background speaks to the greatest loves of my life, and these bastards want to gut it.

Really I could have been more intimate. The words from the ABC have accompanied the very dearest moments – but that would involve too many people giving permission and sacrificing their privacy. This is the best example I could give.

There are no words for those that would rob the future of its timeline, its hashtags, its narrative.