A post for a friend I haven't met

You might say I’m writing this for a friend.

Call it an awareness thing. I’m not competent to diagnose my friend’s condition, but I know how difficult it can be if your body decides to lay out a puzzler for the experts. So here’s the early history of Ms T’s condition, as always related with her permission.

Disclaimer: yes, I have told some of this in a disjointed way, before. This is more linear timeline, with a specific purpose. I won’t be offended if you skip over it.

The reason we want to set this on the record is to illustrate how, with a rare condition, the symptoms can deceive.

Ms T’s condition is the immune system disorder known as vasculitis. The immune system – I guess it’s the T-cells because they’re on the list of “things we look for in blood tests” – has decided to nuke her blood vessels.

That’s not particularly common, but there’s more. In my limited understanding, vasculitis typically starts with things like capillaries – there are some typical symptoms, purpling near the skin and so on. Ms T’s started with major arteries: one carotid, the celiac artery, one renal artery.

The celiac artery was the one that delivered the symptoms that got us a diagnosis. The rest ran under the radar at the time. And the symptoms didn’t actually point to the cause.

What happened – nearly three years ago now – was that her stomach shut down. Between January and March, she went from steak-after-bushwalks (15 km was a good day) to not eating (because every attempt ended in pain), and only able to walk with assistance. We tried a walk in February to see if her appetite would recover; I carried her he 200 meters back.

Yes, we were seeing the doctor. After several visits and nothing working, he referred us for imaging. The clinic had a six-week waiting list.

So we waited.

Things got moving once the specialist took a look. Ms T couldn’t eat because there wasn’t stomach there, just ulcer. So with the specialist speaking kind of urgently down the phone, the imagers waived the waiting list and opened early the next day for an CRT (or was it an MRI? Anyhow, a big machine that takes pictures).

The next day we were in hospital – and still running with the wrong diagnosis (a rare liver cancer).

So: most of Ms T’s condition was (externally) asymptomatic – the extent of damage was only revealed by imaging. Here only symptoms where symptoms not of vasculitis, but of the collateral damage.

Now, I could make a political point of this, something about the state of the health system, public versus private, blah blah blah. Once in the hands of the public specialists of RPA, I’ve got nothing but good things to say. Others have a different experience; I’m not responsible for that, nor am I going to change my report.

What I’m relating is how difficult a diagnosis can be if you have a rare disease. The GP got it wrong; the first specialist got it wrong. RPA – with six specialists taking their shot over nine weeks – ended up with a coin toss, vasculitis or endocarditis.

There simply isn’t an easy test. We tossed the coin the right way. She lived. Rough, but alive. We have the chemo, but right now it’s going in through a vein, which is roughly that we’re killing the T-cells from a safe distance and the side-effects are manageable.

The point of this story?

Right now, someone I know only on Twitter is threading through the labyrinth of mysteries. It won’t be the same thing as Ms T, unless the universe is throwing up the kind of thundering coincidence that makes you throw aside a whodunit in disgust.

But if something is taking months to work out, I’ll place a small side bet on “rare”. And if it’s not racing ahead, I’ll place a much smaller bet on “not cancer” and hope I’m right. But this difficult, I’ll guess that my Twitter followee is on the long road down rare chronic illness.

I hope not. I hope it turns out to be easy and innocuous and temporary.

If not, there’s good news and bad.

The bad is that it’s a very, very rough road.

The good is that many, many of us will stand alongside you. One last story in this overly long post.

In the darkest days – when Ms T was about 35 kg, we were still waiting for the first round of imaging, and I was watching her die – the previous owner of Bunjaree Cottages (which we now operate as our labour of love) gave us a free weekend in a cottage. We’d missed a regular booking, she phone, I told the story, and bingo.

That wasn’t all.

She also gave some life-saving advice – she’s a trained nurse – that kept Ms T going long enough. Just. She suggested something that was revolting, but extremely nutritious in small amounts. Ms T’s weight bottomed out at 31 kg, but she lived. Mrs A – the nurse – had experienced catastrophic weight loss before.

Right now, I can only pass on support and advice. But any of us in the same world are here to help, whether it’s moral, practical, whatever. Because governments aren’t helping: we only have each other.

Go well, Ms C. Our thoughts go with you.

Harvard Business Review goes crackpot with “green the Australian desert” scheme

Please remember this: what I’m about to discuss is an article in Harvard Business Review. You know: a highly respected publication with an international reputation.

In so far as a single article suffices for this, I’m about to drop that reputation in the blender and ask the immortal question “Will it Blend?”

The article in question is this one, “When Social Enterprise Demands Mega Scale”, in which a guru of e-mail marketing, Arthur Middleton Hughes, suggests solving climate change by turning on the desal plants on a vast scale, to turn 80 percent of Australia’s deserts into Paulownia hardwood plantations. This, he confidently asserts, would soak up about 80 percent of the world’s excess CO2 and pay for itself through hardwood sales.

The numbers are all wrong.

Quote: “Australia has 834 million acres of desert”.

No, we do not. According to Geosciences Australia:

“The total desert area equates to 18 per cent of the total mainland area of Australia” – which, given Australia’s total area, means the desert area is around 137 million hectares – or 339 million acres (2.47 acres per hectare).

In other words, whatever source Mr Middleton Hughes used for our area of desert, it was more than double the actual area.

“If 80% of the Australian deserts were provided with fresh water and planted with fast-growing trees, Australian deserts could reduce the CO2 in the atmosphere of the planet by 7.4 billion tons per year.”

Nope. Because of the simple error in research, the total carbon capture available isn’t 7.4 billion tons per year – it’s 2.9 billion tons.

How does Mr Middleton Hughes propose to pay for this vast project?

“If fresh water were pumped to 80% of these deserts and trees were planted, the result could be a world hardwood export business eventually worth $2.4 trillion per year.”

Ahem: according to Globaltrade.net, the global hardwood market in 2006 was $257 billion. So there isn’t demand for $2.4 trillion worth of hardwood; the price would collapse.

And all of this ignores the environmental impact.

Australia’s deserts aren’t some kind of Martian landscape where nothing lives or grows. Rain brings the deserts into bloom: they are vital and diverse ecosystems.

Thanks, Mr Middleton Hughes, but we aren’t going to hand over deserts to a crackpot scheme that won’t work.

Ethics and activism: more than fifty shades

I’ve stayed out of the Jonathan Moylan debate because recent events have left me a little fearful of controversy. More on that later*.

If you came in late, Moylan issued a fake press release that briefly caused the price of a company called Whitehaven Coal to fall. The fall was only temporary, because the hoax was discovered and reversed; but the outcome has been a frenzy of pro- and anti-Moylan moralizing.

Apart from simplistic 140-character attack-defend-change-tack arguments on Twitter, there’s been serious words written by Bob Brown, Christine Milne and others on both sides. Because The Greens decided to endorse Moylan’s activism, they’ve become a secondary target for criticism from the centre and the right.

(Personally, as a strategy I’m not so sure their position will harm The Greens. If their constituency is genuinely “old Reds”, hardline activist positions will help them more than trying to become filthy Fabians!)

I’m not competent to assess the legality of what Moylan did, so I’m happy to leave that question to the courts. If he’s charged and found guilty, it would seem pretty clear that he broke the law; if he’s charged and cleared, it’s pretty clear the other way. It’s only an open question if ASIC decides not to lay charges.

What of the ethics?

Unlike Edward Spence, http://theconversation.edu.au/whitehaven-hoax-was-an-unethical-act-that-was-harmful-to-all-11571 writing in The Conversation, I don’t see it as a simple ethical question. I don’t regard the “informational environment” with the same awe as Spence, for a start – mostly because I don’t think such a thing exists as a single thing. A cat video on YouTube isn't quite the same as a climate denier blog isn't the same as a stock exchange announcement.

It seems to me that the essence of disobedience and activism is that you must be aware of the possible or likely consequences of your actions, and willing to accept those consequences.

In short: there is no “clean” act of resistance.

There is no way to break a law without creating an ethical quandary.

When Mahatma Ghandi led the Salt March, he was encouraging his followers to break a law (a tax on salt).

It’s easy, 80-plus years later, to endorse his position; but as it happened? When one of the immediate results of the march was 60,000 individuals sent to prison, the ethics must surely have troubled Ghandi’s sleep. He was human.

The ethical example we get from Ghandi is more complex than good-versus-evil. The activist must renounce violence; and the activist must be prepared to accept the consequences of his resistance.

It’s interesting to note that Ghandi did not consider financial harm to be the same as violence, by the way. The Salt March was directed against a particular, oppressive tax, and he wanted all Indians to boycott British textiles.

Institutions are legitimate targets of resistance. They must be: because that’s what resistance is for, to force change upon institutions. An act may be wrong-headed and ineffective (which is where I feel Moylan went wrong), but it’s not evil merely because it’s directed against a particular institution that a particular ethicist feels is sacrosanct.

*I mentioned a fear of giving offence. I’ve found myself subject to a sustained campaign against the business that I run with my wife. In particular, there are those on social media who, if they dislike what I say, bring the business into the argument. There is also a persistent troll on TripAdvisor.

Because the impacts are immediate and devastating, it is an effective threat, and one that I have to work hard to resist.

But people who will hide behind anonymity to attack individuals on the basis of what they say or believe must be resisted. To do otherwise is to cowardly hide from cowards. So I guess the risk I bear is that I will continue to be attacked. Fortunately, I have more than one way to pay the mortgage. For now, we will survive.