Welcome to Lübeck! Tourism before the terror

It's so long since the trip, when Ms T and I and our sons travelled to the UK for the first time, and one of the great memories has nothing to do with the UK – more than ten years.

Don't get me wrong: the UK trip was a treat beyond our means, which is why our dearest friend on earth helped us get there. But … that is a different story.

In a world that hadn't yet suffered the global terrorism panic pandemic, we called by a minor German city, Lübeck, on our way home. The only reason is that Ms T believes a big part of her family history is associated with that city. “We once owned a castle that got turned into a mental hospital in East Germany” is the short version.

So we figured out that a cheap flight would land us in Lübeck to be tourists, a cheapish train would take us to Hamburg, and after that we could pick up our flight back to Australia with no penalty.

So we went to Lübeck, and there are things to see there: churches, for example, restored after WW2 in which the “restoration” work is left in plain white and the “original church” is the bits gathered up after the war, so you can see, dark-on-white, the extent of the devastation.

There's the tourist boat trip around the harbour, which I loved. Or the sausage-seller who could talk better to my son (who has no German) than to my wife (who studied the language in high school)!

But that's not my favourite memory of Lübeck.

My favourite memory happens at border control, in an airport better described as a “shed”, with one bored customs guard processing the incoming passengers.

It seems that in those days, at least, if you were flying cheap and your destination was a Hamburg industry conference, you landed in Lübeck and got a free bus to the conference. So the customs officer had his repertoire down pat:

“Travelling to Hamburg? Out the door, right to the bus, good-day.”

We broke his recitation.

“Travelling to Hamburg? Out...”

“No. We're travelling to Lübeck.”

“Lübeck?” … pause … “Why?”

(And I'm not going to try to do a German accent in text.)

Ms T: “Because my family came from here.”

The customs guard switched from bored to a face-splitting grin and arms spread wide. Really: I've rarely seen a transformation like it, especially from someone in uniform behind a desk. He stood up:

“Welcome! Welcome to Lübeck! Willkommen! To our lovely city!”

It took us a few minutes – which wasn't welcomed by those behind us – to get through customs, because we were receiving (good) advice about where to get breakfast, and being reminded that “you can walk everywhere in Lübeck!” (which was true), and a reminder of the churches and squares that were worth seeing (he was right).

And the customs guard gave us the key bit of information that made our walking-tourism perfect, that day: “Go to the railway in a taxi, leave the luggage in a locker, and go walking”.

And we have wonderful and (some) distressing memories of that city: its war damage must have been horrific, for example. But we also remember being welcomed at the gate of the city, with joy and enthusiasm, and I wish a dozen years later I could find that guard so we could all thank him properly for helping us find a strange city in a foreign tongue, and enjoy it.

But the world changed, with America holding the whip: I guess the customs guards who have license to smile are few and far between, today. But Lübeck won't have changed that much behind the gate, and it's a wonderful place.

Lisa Bonchek Adams: say what you will

To write this, I first had to do something really difficult. I'll explain that in a minute, but it's the reason I'm crying.

The debate de jour has been sparked by some of the most insensitive columns I've ever read: this, from the Guardian (which includes the utterly shameful admission that the columnist included direct-message conversations in the column without permission), and this from the New York Times – a stunning husband-and-wife double-act to piss on a dying woman because she's Tweeting her cancer.

To answer the wife, Emma Keller: there is no ethical question. A person has chosen to write and publish, and has a platform from which to do so, and you have no damn say in it. And, Bill Keller: your snide aside about the cost of visiting dogs is beyond reprehensible.

The cross-platform pissing contest is cowardly beyond anything I can express.

And I recall to mind another individual who chose to die in public, Denis Wright. His blog posts – still preserved here, for how long I know not – were an exemplar of dignity, a life documented in public as Lisa Bonchek Adams' is, and the reason I'm crying now, because I re-read the last week of his journey and the following eulogies and damn even writing these words taps a spring of tears. It was really difficult.

If Lisa Bonchek Adams is wrong to fight her fight in public, then so was Denis. I'm too distant from Ms Adams to speak to her stance, but Denis, I at least knew well enough on Twitter to chat with, and I admired him well enough to (I hope) learn from.

And I'm still on the edge of tears.

My wife and I have chosen to put some of her experiences on this blog, and I won't reiterate them tonight. Our path is different: not cancer, but the toxic and dangerous path of a medically-suppressed immune system.

The reason we speak out is because we know there are things aren't known to the world at large: really, the same reason that Ms Adams is Tweeting. And because we see the “pink ribbon” view of illness – the glamour that raises funds – and like her, we resent it, because there's nothing glamorous about illness, and nothing pink about vomit or shit or pain.

Ms T and I are with you, Lisa Bonchek Adams: keep saying it. We understand. We endorse.

Save what you can

“Negative thoughts never lead to positive outcomes”.

Aside from the fact that sales aphorisms always come from Rich White Americans, I call bullshit.

I can easily think of at least one profession in which thinking the worst leads to success, and optimism leads to disaster.

Here's a video of what happens when a civil engineer is an optimist - the Tacoma Narrows Bridge:

And here's an engineering pessimist:

“If I put one rock on another”, the real engineer says, “there will be an earthquake, or a flood. We'd better build it like this, so it never falls down.”

“Negative thoughts never lead to positive outcomes”? Bollocks.

And yet, the same world that can consider a lame aphorism like that which led this post can treat subscription underwear as a good idea:

“I am an adult male, so lame that I can neither wash nor buy underwear, but that's okay because there's a lauded start-up that will let me subscribe to my jocks.”

Truly, I have not seen a more lame idea since the Tech Wreck (look it up).

Its premise is that men can neither clean nor buy their own underwear. And, given the spavined, incapable, can't-do-without-mummy, send-me-skincare culture of the modern male, I guess it'll probably make enough money to get by.

Look: if you're so lame you can't keep track of underwear, you're not a man, because you're not an adult of any kind. The washing machine – over there, lamo – can be deciphered without a codex, the clothes-line is outside, I realise it's an uncomfortable distance from the computer so take the damn iPhone with you, and if it's raining, use the dryer, whose interface says “on” and “off”.

But no, there probably is a demographic of 20-something utter losers who can't keep track of their own underwear, and can't bear to ask mother to keep them supplied at least until they find a girlfriend whose devotion works better than her nose.

And those “men” will probably be working in sales, and believing the same stupid aphorisms that their elder sales-people are sprouting at them.

Sad, really.

Here's another bunch of ten-cent aphorisms that gets published because it's from Harvard. 

1. “Don't give up on your dreams”. Dude, I'm not at Harvard, and I'm over fifty, and my wife's health got stolen by her immune system, which means she'll never work again. I had to grow up, and focus on survival, and walk away from my dreams. You smug turd.

2. “Don't be afraid to suffer”. Of course I'm afraid. Humans are. I've carried my wife into ICU, for heaven's sake. If next year has worse, I'm terrified. You smug turd.

3. “Seek the mystery inside the truth, not the truth inside the mystery.” Meaningless drivel: bollocks with Harvard's name attached. A plastic Buddha with made-in-China on its bum.

4. “Let you happen”. What the hell? Really, what can happen to me that isn't me? You're just pulling aphorisms out of the evanescence of fart by now.

5. “The question isn’t if you’re going to die. It’s whether you’re going to live.” Jesus Christ. You're going to die, I'm going to die, my wife's going to die, it happens to all of us. And I'm sick to the back teeth of gimcrack philosophy. I don't wish your death, I just desire your silence, until you've learned life at the teeth of death.

Dude, by now I've spent one-third of my life caring for people who I loved, who were dying. Your theme-park philosophy isn't worth two thirds of a cube-root of nothing. Right now, I am celebrating because my wife can walk three kilometres, and can consider six in the near future.

I've got a simpler philosophy, the last line of The Triffids' album Callenture.

“And between ourselves, and the end at hand /

Save what you can, save what you can.”

The burdens we carry

Sarah*,

I've never quite thought what it's like watching from the outside, when you're close – so close that it's like pressing your nose to the window. And when it's someone close, so that what's happening puts daggers in the heart.

Me, I'm in the middle of my personal maelstrom, as you know. Which makes it easy to forget that people close to the storm, but not in it, have feelings too. I should know: I was shocked to talk to a friend recently, to find her crying when I thought I was just relating facts. Her outside was closer to my inside than I realised.

And you're the one on the outside, which I now realise is harder than I'd thought it was. You cry over photographs, and fret that the people inside the storm won't survive it.

You know what? That's beautiful.

Really: because if you're on the inside, getting touches of love from the outside can hit like a stick full of love and weeping.

But enough of me. Your concern is that one person is dying, and someone closer to you, the wife, is in denial. And that's what I want to talk about.

Denial takes many forms, and one of them, I'm familiar with. By the time Ms T was sent to RPA emergency, I already thought she was dying (which, in the absence of hospital, she was).

To nearly everyone, Sarah, I would have seemed in denial in those horrible three months. Even my mother saw nothing but a stolid optimism from me; I found ways to talk to my sons without actually lying to them. For example, because they were used to some of the ways I spoke, I could have a conversation like this at 7:45am in the morning:

“How's mum?”

“Ahh, you know, guys. Still in hospital, still alive, after you go to school I'll head over to the hospital and find out properly, now eat your breakfast.”

That got me through a lot of mornings, and any third party would take in my tone of voice and words and tell me that I was in denial.

So the first question you have to ask: is your sister in denial, or is she just maintaining a public face, a facade, because if she ever lets it slip, she'll end up like I was then, lying on the kitchen floor, cuddling the telephone after the end of a call, drunk and weeping.

One kind of denial, you see, is to deny your own feelings, terrors, pain, and for God's sake not listening to the voice saying “he will die”. As well as “what about me?” As well as “what about the children?” As well as “what about the mortgage?” And so on.

Yes, there is the other kind of denial: the one that simply pretends things aren't happening.

And it's hard to tell between the two, from the outside.

Don't try. If you assume that your sister, with the sick husband, is in the wrong kind of denial, you'll direct your attention to breaking through her defences, and that won't end well. The only thing you can do is provide support – and the support you provide doesn't change whether or not you have chosen the right kind of denial.

Think about this, Sarah: whether or not your sister is completely sane, her husband's condition doesn't change one way or the other. Whether she recognises the situation, the outcome for her children if he dies will be the same.

Whatever her says in public to you: if or when he dies, the support you have to provide will be the same.

This is the cold equation you have to live with, Sarah: that you have to choose the burdens you can carry, decide you will carry them, and then …?

I'm the bastard who has to say it. You can't set the burden down. It'll be with you until either someone dies, or the crisis passes. Once the cup is poured, you have to drink, no matter what it tastes like, how much it hurts. There won't be anyone else to take it from you, because there never is.

But look at it this way, through the tears. Why would you assume the burdens? For whom? On whose behalf?

You love your sister, so much that you will assume burdens of worry on her behalf.

You love her children, enough to worry that their mother isn't coping with the impending death of her husband, their father.

This, Sarah, is part of growing up. You have learned that love doesn't exist without pain, because one day, love will be lost, and others have to take up love's burdens.

Sarah, your sister's children may well need your love and shoulders, in case your sister really is in denial. Your reality will be needed, and – here, I am again the bastard bearer of bad tidings – someone will have to carry the burden.

And I know that you may not be strong enough to bear the burden. I don't care: you know the burden exists, and it terrifies you (as it terrifies us all), and that is sufficient to warrant my love. I hope, wish, pray that you can carry whatever burden falls to you, and guarantee that I will do my best to share it.

*Not her real name, and not the same “Sarah” as last time.

Two walkers' personal pilgrimage

Really, it's such a small thing.

The walk named the “Den Fenella Lookout” doesn't rate. It's not one of the Blue Mountains' great long walks, like going from Kanangra Walls to Katoomba (which I have walked), or the Six Foot Track (part of which we have walked), or Katoomba to King's Tableland via Mount Solitary (a very small part of which we have walked).

The Den Fenella walk is just a lookout walk from the Wentworth Falls Picnic Area.

It's just 1km down and the same back. With a descent that wouldn't upset anyone except if, as Ms T, they've been too sick to attempt the walk for four years, which makes it special.

And because it was laid out by someone who had a soul.

The Den Fenella Lookout walk starts as a somewhat boring descent through the same Blue Mountains heath as everyone sees, even if they only look at tourist lookouts. It's everywhere, including at Bunjaree Cottages, the joint labour of love of me and Ms T.

It passes down past a small bit of hanging swamp, which is also everywhere … so long as the developers don't kill them. They look like useless bits of ground, but they also supply an awful lot of the drinking water that ends up in Sydney's catchment.

After the swamps, the Den Fenella walk drops into a grotto. It's a nice grotto, but if you want grottos of inexpressible loveliness, go somewhere else. This grotto is just … nice. That's all. Nice.

And there's another walk around a hanging swamp, with a bit of walking under the cliff, and then …

You turn a corner and find yourself overlooking a long valley with Mount Solitary pretty much dead-centre of the vista.

It takes the breath away – even for Ms T, who hates heights, detests lookouts, and can only ever drop herself on a rock, as far as possible from the railing, and gaze over the valley as a coward.

The first time we walked the Den Fenella, we agreed: “This is a walk with soul in it. Somebody who loved someone wanted them to see things the way they saw them.”

And despite its brevity, we perceive the soul: the person who wanted someone to get the big reveal, the “glamour” – to quote a movie – at the end of the walk. To walk around some rocks, and suddenly find themselves in a vista of inexpressible beauty.

And a couple of days ago, Ms T managed the walk, walked down the stairs, caught “The Prestige” – for herself, for the first time in four years.

It's only a couple of kilometres. The descent, and therefore the climb back out, is only a hundred metres. But it's a big thing, for us.

Ten years ago, an accidental combination of circumstances led us to take up bush-walking. We started with light stuff – including the Den Fenella – and Ms T discovered to her vast surprise that walking made her chronic back pain (an old fracture to lumbar 3 and lumbar 4) disappear. We spent the next six years expanding our range.

At our best, we could cover 20 km in a day, and those walks formed the basis of the best years of our marriage. You do so much talking in ten hours in the bush.

Just before Ms T first went into hospital, she couldn't walk the fifty metres to a bus stop without help, and it's been a long road back.

I'd given up on some things. For example, I thought that we'd be doing well if we got to finish a 10 km walk without drama. But on New Year's Eve, she declared her own goal is 20 km before the end of 2014.

Doing our personal pilgrimage to the Den Fenella is an ideal way to start.

Me and Ms T: musing on a marriage

Disclaimer: I am not giving advice here. Really, I'm crap at advice. I'm sharing experience.

“Sarah”*,

I'm writing this as background for you, because when I try to say this stuff conversationally, I digress and self-interrupt and never get through it.

Our conversation got me thinking, while I was driving somewhere, and adding up.

Out of 22-plus years of marriage, there have been probably seven, maximum nine, that Ms T and I both really count as “happy marriage” years. Ms T's memory agrees pretty much with mine, because I asked her.

You missed much of this “from the outside”, much as I didn't notice what you wanted to tell me, until you hit me over the head with it. So much for appearances. Also, I'm kind of aspie, and apt to miss subtle signals.

Post-natal depression drove quite a chasm between Ms T and I in the mid-1990s. Even when we looked besotted to an outsider. Even though we tried to go everywhere together – we were finding it hard. Communication fell in a hole.

Later, the boys were high-maintenance, and until we got a decent diagnosis and counselling for them, we often got into arguments. Communication of a sort, with an apology at the end as a perverse incentive. When you don't know what's going on, a blame game happens easily.

The counselling was notionally for the boys; but a lot of it ended up being counselling for Ms T and I. And it helped.

Ms T's early menopause, about that time, wasn't a picnic either, she reminded me today.

Our first trip to the UK helped a lot. We'd hit wits'-end a little bit before that – boys difficult, the wind-down of my then-workplace, my first attempt at freelancing, my mother driving us a little nuts!

Then we got to see the boys in a context where we didn't have to worry about what the school would say. They got to go places and respond to them without the hassles of school-appropriate behaviour. We got to see them through eyes like yours, instead of a principal worrying, a head teacher disciplining, etc.

That trip also helped get Ms T and I communicating better, because instead of the talk being “what are we going to try next to settle them down?”, it was “wow, they love The Rime of the Ancient Mariner”, and instead of fearing them being bored by The Globe, they were entranced, and we talked about that, and so on.

Things went on an upswing for a few years after that: we began bush-walking, came to the UK again, I was making good money, Ms T was still working, there was spare money to start renovating the house (ha!). That good period – call it five years – was absolutely the best of our marriage.

Then Ms T's health began to fail. You know the story from there. Thankfully, Ms T and I managed to wash up on the same shore. Whatever is wrong isn't us. So we cling close.

We got lucky, but it was hardly ever a certainty.

The only thing that is certain is that the times we looked over the abyss of separating, we drew back. I suspect we were mostly too scared to split up.

It never was a special “better” marriage that we had. We nearly didn't have it at all. Neither Ms T nor I really know what the secret sauce was. We know what is working now, but how we got here is a bit of a mystery.

Along the way, we had to farewell some treasures. There are gaps in our relationship where there once were habits, things that were once part of she-and-I. Yeah, I might cry about that from time to time.

So it goes; we're here.

*Not her real name, obviously.

Meteor showers, fathers, and happiness

Someone reminded me.

Maybe only a few people will read this, but if I've written it, I'll remember it better.

The scene is a very suburban verandah of the 1960s. In those days, there were still eaves on red-brick project homes, they were mostly single-storey, and they always included a covered verandah of at least a few square metres.

The night I'm thinking of must have been in the summer school holidays, because as a (roughly) nine-year-old I rarely even got to stay awake late enough to see the TV test pattern! And this night, when the TV ended for the night, the whole family retired not to bed, but to the verandah.

And I was maybe nine years old. As the change-of-life child of the family, that meant my siblings were already 16, 18 and 20: old enough for long adult conversations while I tried to butt in (I guess) and doze while trying to stay awake.

No, the numbers don't work. I must have been eight, because by the time I was nine, the eldest had left home for university.

Was being awake this late exciting? You bet.

And it was summer, which in Sydney means it doesn't cool down early in the night. So I lazed around with the rest, and don't remember any details, but I do remember the meteor shower dad kept us all awake for.

There was a mattress or maybe an inflatable that I was lying on. There was adult talk all around. The night was muggy and dark. Even the suburbs, in those days, still had stars.

And the stars started moving, flashing across the sky. And every time he spotted one, dad would laugh and call and point.

And I remember, because that was one of the very few times I knew him to be happy.

I remember how deliriously happy he was when, in a rented Halvorsen cruiser, we ran into a wild storm trying to get to Pittwater. He was a seaman in World War Two: the waves crossing the mouth of the Hawkesbury were taller than our boat; mum and my siblings and me were cowering (I was put near dad for my own safety).

He was laughing like the Old Man of the Sea, swinging the boat towards every towering wave, turning it after the wave passed, yelling “turn you bastard!”, inching towards Pittwater, alive and mad and loving it.

Once, he bought me a gift I didn't expect, a whole new drum kit when I thought I was getting him to buy me a new pedal. My reaction made him happy, I think.

He wasn't happy that often. To my 50^th year, my mother's explanation didn't go far beyond her standard explanation, that “the war changed him”.

I guess he may have been happy in the affair that, sometime when I was a kid, caused misery everywhere else. Or perhaps it may have only been a small relief of his own misery and madness. Mum once said she forgave him partly because of the war: because she had loved someone who took ship and never came home, but she understood.

He was over-the-moon when a vet said our Labrador, Denny, could be saved after he'd been hit by a car. It cost $1,800 – a considerable price in 1974 – but Denny repaid him by caring for dad when Alzheimer's degraded his brain. The dog would take him out each day, and always return him home.

…

There was one more time. The year was 1977, I think. I don't remember the reason for the trip, but it took us through the lower New England, and dad wanted to seek out a friend from the 1950s, when he was surveying roads around Barrington Tops.

His memory was perfect, then. He found Tom Meehan's place through unmarked dirt roads without trouble. It was a classic post-and-corrugated-iron shack, abandoned, but because it had no locks, we walked through it before we continued the search.

A road crew stopped us, and dad asked if they knew Tom, and they did, and pointed us to the right road. We drove for a while on the dirt, and an old man leaned against a rail-type fence.

Dad stopped the car, got out and yelled.

“I'd know your beret anywhere on earth! Damn you, Tom! I thought you were dead!”

“No, just had to move closer to town. How are you, Stan? This one of your sons?”

He was happy that evening, as well.

…

There's a photo of me, eleven or twelve years old, perched on a fallen tree, on the path that leads to The Ruined Castle in the Blue Mountains.

You weren't happy that day; perhaps you were worried about work, or quite possibly you resented being detailed to drag me out on a proper bushwalk.

But I was happy, and I've taken Ms T and the boys on the same walk, twice, and we love it. And I don't say so, but I think of you when I'm on that path.

Because I was happy, that day. So much so that I keep you in my mind whenever I tread that path.

…

And here I am, transported to the late 1960s by a friend's casual remark and wondering why.

I can't wish my father alive again. He wasn't particularly lovable. As mum said, the war changed him. What sanity the navy left him with, he saved to make sure he could provide for his family. It didn't leave much sanity for the home front. He was volatile, fey, dangerous.

I'm volatile and fey, but I've worked hard, and I'm a lot less dangerous.

My sons will at least remember happiness, because they've seen plenty. I may nag and carp and demand they do better, but I also laugh and love. Maybe without realising it, I've set myself the task of healing the wounds of my father's war, so my sons can somehow manage to be more sane than was given to he or I.

And I want them to know that a happy father isn't so unusual.

Twelve wishes of Christmas for 2013

There are too many people, and I don't have the money for so many gifts. So here, in my small way, in my little corner of the Internet, is my Christmas list of people I'd like to wish well to for 2013.

1. RPA Hospital

Keeps my wife alive. Sometimes, that's been hard. And the names are too many to list, but Dr Roger Garsia of Immunology has worked well on a difficult case; his interns are without peer (in particular, Dr Myanh Nguyen deserves great success); and Ms T's chemo is down from fortnightly to quarterly.

A special out-of-2013 mention to Dr Gok Paven, now at St George, who led the team that first worked out what was going on, and is still a pillar of our world.

I must mention the nurses in Gloucester House, now the poor cousin to the famous suit-run joint over the road, who still get to handle the miserable cytotoxins that keep Ms T alive.

2. The Register

I've never had so much fun in my job as I have had working for The Register, and along the way I get to work with good people. Simon Sharwood, APAC Editor, is one, but there are plenty of others. I hope you know who you are.

3. Dr Colin Lim

Our GP. He gets the day-to-day stuff, the boring “just here for ten prescription refills” stuff. He still feels bad that four years ago, he didn't spot what was wrong with Ms T – even though it later took six specialists to get to an inconclusive choice of possibilities. That was the worst coin-toss of my life, and I can't blame a suburban GP for not cottoning onto what was going on!

4. Guests at Bunjaree Cottages

It's not just that they pay bills. Or that they're helping my main mission with Bunjaree Cottages, which is to keep 14 hectares of bush – including my beloved Lyrebirds and Antechinus, and a big hunk of hanging swamp – out of the hands of concrete-lovers.

This year has been a signal year of “nice people” and “people who get it”. People who treasure the bush and the environment and the values. Once, in a desperate circumstance, I had to teach a guest over the phone how to find and then start the backup electricity generator: he was insanely pleased with himself at the idea of going back to his family with a new set of “real bloke” credentials to show off, so he didn't complain – he even wrote nice stuff in the guest book!

Making people like that happy, giving them a relaxed holiday … to quote “black hat guy” from XKCD comics, “that's how I roll.”

A special mention for @Ponder_Stybbons and another local to the Mountains whose name can remain private, for all their help in 2013 in keeping Bunjaree Cottages clean, and making things nice for the guests. I've rarely met people with such unfailing good humour.

5. My old friend from school

I don't resent your calls for help in depression. I treasure them. On your good days, you remind me why my depression damn well won't win. On your bad, I somehow help, and talk it all through with Ms T afterwards, and life is built out of small victories.

6. Stilgherrian

Stil would, anyhow, resent a December 25 7am phone call saying something like “Merry Christmas”. So I promise it won't happen, and anyhow you don't just haul gas bottles in emergencies, you also tolerate and even encourage conversation from my sons. Which isn't something everybody can manage. So thanks.

7. Shara Evans

A long time ago, Shara took me in out of the rain with a job that lasted years. I already owe you for that, friend. This year we haven't been in touch so much, but when we have, I've always enjoyed it. And you are loyal in a way that few people can manage. Thanks.

7. Twitter friends and blog-commenters

Damn, I've been lucky. When people re-Tweet this blog, or comment on it, I'm in terror. But what I get is a world of friendship and wonder.

Look, in person, I'm a bit difficult, a lot awkward … to quote the kids' movie “Mouse Hunt”, I'm a “cat that's … difficult to love.” But I've found so many friends, fellow-travellers, fellow-sufferers out there in the odd and sometimes hostile world of Twitter.

There is love in the world.

9. You know who you are

You'd never forgive me for naming you in public, so I won't. At a great distance and in touch only by Skype and e-mail, you've become a rock of this household, a treasure beyond price. You've listened to me on the darkest mornings when merely facing the day looked beyond me. 

You're loved by both me and Ms T, because somehow I managed to finish this year saner and better able to cope than when I started it.

10. My first wife

One of the great treasures of my life has been to find that we still can love each other, in spite of history, and in 1976 you were one of my first genuinely close friends, and I'll hold you forever in my heart.

11. My sons

Don't tell them. They think I'm an insufferable nag. I am. I'm also a critic and a scold.

On the things they do well, I'm insanely proud of them. And their job-seeking frustrations I remember from my youth. But they've already defeated some dragons that the world threw at them, and I get the upside of their intelligence, their devotion to Ms T, and their sunny natures. I don't know how I managed to be even a moderately good parent, but luck sometimes delivers the parcels that skill left behind.

12. Ms T

You are my Christmas present. I want no other. "Stuff" has lost its allure.

Last year, doctors would have called up a bookie for odds against you making it. And we still hold each other each and every night, and at 2am when the world is cold, you're still warm. And when the day comes, you will fret and grouch your way through your unchangeable Christmas feast, and when it lands on the table, you'll relax and grin and drink champagne. And I'll pray that next year, we'll still be there to carve the roasts and laugh and drink, caress and kiss, because we both know there is a last Christmas in our future.

My love, let this Christmas not be our last. That's the only gift I desire.

The Thirteenth Trump

There is a last, a thirteenth wish. A silent prayer for the memory of an old woman Ms T and I knew only briefly as a customer. Who tapped my cheek and called me “that young man”, and loved her every visit to our little corner of heaven. If I'd known, I'd have stood quietly near the rear of your funeral and slipped away unnoticed. 

You reminded me of my mother, who died before you at a similar age, and I loved every minute of the handful of hours I spent with you. Go well, dear Pat, and where you are, may you be young and flirtatious and beautiful again.

Depression #2

There's RUOK day, there's the famous mental health charities with famous founders, there are the Order of Australia awards, and there's the public adulation. 

Then there's the suicidal friend. Right now, with medication, we can talk without me having to worry that I'm picking the wrong words and making things worse and triggering the knife or the pills.

Today, I was a bit gratified at a turn the conversation took.

“Richard, shut up.”

“But ...”

“No, shut up. Shut up. Shut up means don't talk. Count to five without talking.”

So I counted to five. Slightly too slowly, because I missed the opening …

“See, you didn't know what you were saying next, and it made you stutter. I've known you since we were fifteen, and it's always given me the shits. Just slow down sometimes and you won't stutter.”

Which is right: I get like that, lost in the sentence, all the nouns fleeing my mental grasp like the mozzie you're trying to whack in the dark, and I'd fear it was Alzheimer's except that I really have always been like this.

So I was grinning at my end of the conversation, that my friend has recovered enough conversation and confidence to tell me to shut up.

So the next thing I said was, “It was bloody marvellous to hear you tell me to shut up. Now, when's the appointment with the counsellor?”

The conversation got difficult again. Four weeks after a GP agreeing that help was needed, and the same GP promising to do his best to get things moving, and writing an emergency prescription for strong anti-depressants to get through the wait, the only thing now known is which facility can fit my friend in, and the name of the counsellor.

The date? Well, you know, it's a difficult time of year, and Christmas is coming, and there's probably a counsellor on leave because they have to take leave as well, and really we don't know.

And that's good enough?

In the country of “RUOK” and “get help”, help is at the other end of an indeterminable wait list? - No, that's not good enough.

Someone else I know well was referred to a BMRI doctor – Brain and Mind Research Institute to its friends, but I'm not one of them and never will be – by their psychiatrist, but got fobbed off by the receptionist with “we will review the referral and call you back”.

The bloody receptionist acted as the road-block.

That was in January. The call-back never came. Calls were made to follow things up: it never got past the receptionist. The individual in question eventually abandoned medications, thankfully without incident, and is doing just fine, again thankfully.

The third aspect of this post comes from the ABC: “Australia second in world in anti-depressant prescriptions”.

No kidding.

A GP, looking at someone threatening suicide in the consulting room, has to act, must act, and with no prospect of immediate help, the GP prescribes pills for a crisis, and that is becoming the public crisis instead of the lamentable lack of mental health services... sorry, I'm ranting.

Help is not on its way. Help is somewhere out there, queued up, under-resourced, dealing with last month's urgent cases, dealing with last night's hospital admissions, and so on.

It's all very well for high-profile case histories to be paraded for their success, to teach people the “get help” message, and to incidentally solicit donations via radio-appearances from Famous Australians Doing Good in the World.

It's quite another for people who desperately need help to have to resort to call-a-friend to stop them using the knife or pills, and keep them talking for an hour or so until they find the strength to cook a meal for their family (which in the case close to me includes one disabled child) and take themselves to bed.

The friend I have in mind brought up her children, including the one with a disability, and stayed employed until, over the age of fifty, the last factory in the region closed a while back. I guess the unemployment plus the disability of the child, plus the prospect of a lonely future …

Shit, it would be too much for me. Ms T's illness hasn't broken me, although it's come close. And I have already told you that I suffer from depression.

But here's the thing.

Ms T was desperately ill, when her condition took her to hospital. She was admitted immediately, and kept until there until there was a diagnosis and she was fit to be sent home and there was a treatment regime in place.

The friend I'm thinking of was so close to death that hospital was needed for the self-harm, let alone the mental state. Discharge was next day, and the treatment regime is still on hold.

That sucks. A mental illness can be life-threatening, and no amount of moralising changes that. In the case I'm talking about, a suicide would leave a disabled young adult without a connection to the world, not to mention the ripple effects.

I'm not – absolutely and utterly not – anyone's Best Last Hope in a mental health crisis. My sole qualification is, as I mentioned, that I am intimately familiar with depression.

While I'm happy – wrong word, find a better one yourself – to offer myself to help a friend cope, it doesn't come without cost on my part. But I have a support network of people who treasure me even when I'm an utter shit (Ms T, I'm looking at you, and you love and treasure the others that also help), and I have to pass on their strength because that's what you do.

But hearing famous people telling we at the bottom of the pile that we need to get help that isn't available in a crisis?

It shits me to tears.

Appropriating the food chain with patents

Artificial foods are apparently the Next Big Thing.

As a story, “artificial meat” or “artificial egg” has just about everything a writer could want. It's got big-name investors excited (Bill Gates is on the bandwagon). It's got science (more on this in a minute). The word “sustainability” gets tossed around with careless abandon (as if adding electricity to chemicals is greener than a farm). And it plays into modern guilt about eating meat.

It doesn't get much better than that, does it?

I have to confess that the science angle confuses me – not because I'm confused by science, but because any group of “food hackers” (as the cool writers call them) could be transplanted into the labs of any food multinational without having trouble with the transition. The journalist, however, would suddenly find their science intimidating and evil instead of exciting and “food hacker” cool.

But what really troubles me is that a statement like this, from a piece in Mother Jones, passes without serious examination:

“The goal, Tetrick explains, is to replace all factory-farmed eggs in the US market—more than 80 billion eggs, valued at $213.7 billion.”

If you look for the money, you find this patent application: “Plant-based egg substitute and method of manufacture”.

As you would find if you follow the money on any of the new “food hacker” heroes. I won't bore you with a list.

But it's odd, in my mind, that the same Mother Jones that can easily see through Monsanto's patent-driven bid for world domination – “Monsanto: all your seeds are belong to us”, for example – can't look behind the “food hacker” curtain to where the patents are.

The question enthusiastic journalists fail to ask is really quite simple: do you want a world in which an entire foodstuff's supply chain is owned by one rich entrepreneur – sorry, “social entrepreneur” as Josh Tetrick's Wikipedia PR says?

Do you want to eat by sufferance of one patent-owner? I don't.

Depressed

Here's where it gets difficult.

I'm going to talk about depression, which I, like so many people, have had as a long-term companion.

I fear talking about it, because like so many people, I have an employer or worse, a putative future employer who might say “no dice.” I suspect today's employer, The Register, isn't going to flick me. Who knows what might be in the future?

And I'm not going to talk about treatment.

I'm going to try to talk about experience. I'm trying to describe the inside, because it's so hard to understand from the outside: and because those outside suffer pain that isn't theirs, because it's so easy to think you're responsible for someone's depression.

Just because you love us. Think: if your loved one had a cancer when you met them, why is it your fault, just because you didn't understand it back then?

In depression, there is no such thing as a small crisis or a reasonable perspective.

Perspective? I can do it very well, with one proviso: the crisis belongs to someone else. Call me to talk about your crisis, I'll be calm and rational, gentle and sympathetic, and I might even find the right words to say.

Drop a crisis on me, and I have no perspective whatever. I can lay out the steps I need to take and take them, but inside, I am lost in panic and suicidal thoughts.

Some crises are more equal than other, if you're on the outside of this damned thing. On the inside, any crisis – even the crisis you imagine – looks the same.

I fear I have offended a friend? That's a crisis.

Ms T has a fever? That's a crisis.

Something happened that a bunch of public health announcements tells me to treat like a crisis, even though I know it's a visit from a minor ailment I've dealt with every few years or so? Yeah, that's a crisis as well.

I want a hello from someone who's incommunicado because of travel and isn't answering? That's a crisis.

Lightning knocked out an expensive and crucial part of my business, and I don't know its insurance status? Also a crisis.

And so on.

Depression, at least how it hits me, destroys perspective. You don't even get the fake perspective of a painting. There isn't a perspective, there's just …

Fuck, I don't know what. I don't know how to describe it. Something happened, and suddenly I'm feeling like this, and my sons have decided that it's not a good time to talk to me, and Ms T (why do I fear her death? This is why) is trying to stroke my arm, but I want to pull away and get angry, but I don't want to hurt her so I stand still and listen to reassurance that doesn't help, and …

It frustrates the daylights out of people – I know from the experience of others – that someone feeling this way simply withdraws from everything. We, the sufferers, leave those closest to us, those that love us most and best and longest, outside the doors we erect against them.

And then, of course, we feel guilty for locking the door.

No, I don't have an answer. Not even on a good day do I know how to defend against the bad days. I fight my way through and, because I have the unbelievable good fortune of Ms T and never-ceasing talk, I somehow talk my way through.

Right now, the talk isn't finished and the dark hasn't lifted. And I'm not offering prescriptions or suggestions. I'm trying to describe the experience, and words are so bloody inadequate.

You can never go home

A friend of mine is having some marital issues, and that got me and Ms T talking.

We've had hard times. Getting through a catastrophic illness isn't easy. Adjusting to life afterwards isn't easy. Shit, even the normal stuff of mortgages and children and employment isn't easy.

And we're still here and together and wondering how we got through, and agonising over what to say to someone else having a hard time. And we got somewhere, and it's the point of this post.

A relationship or a marriage can get through the tough times. If there's one insight I have to offer, it's not “how to get through the tough times”. It's “what about afterwards?”

You see, the story always ends at the “happy ever after” and doesn't tell you what the “ever after” feels like.

If you want the “happy” bit of the “ever after”, the only lesson Ms T and I can possibly offer is that you have to understand something: it won't be the same.

You can never go “home”, wherever that is.

I'm not going to reiterate the travails of Ms T's illness, now better than three years old. But at some point in those three years, we decided that what is left to us in the future is more important than trying to perform a constant CPR on the past. So somehow, by mutual consent and without actually deciding to, we made a decision that made the new foundation of our marriage.

We put our hands together, gripped tight, and walked away.

Back in our pasts, there's a woman who – made up by an expert on the day – looked like a film star when we married.

Back in our pasts, there was a man who could do so much more than I can.

Back in our pasts, there were so many things.

But if we tried to cling to those things, there wouldn't be an us to cling to, to love, to try to fashion a future.

You can only make the future out of the materials you have to hand. And if they've been ransacked by circumstance, you have to decide: do I want to scrap it all and start again – would I want to buy a Harley-Davidson and hope someone young and nubile scrambles on behind – or do I want to remake a future with someone who I know loves me?

The decision was thrust upon Ms T and I in an awful hurry, because she was so close to death when I took her to RPA emergency a few years back.

Somehow, in the last three years of crisis, we reached a mutual decision, or perhaps we both made the same choice at the same time.

We walked away.

Not from each other: from what we once were. We farewelled our last sentimental dreams of what we'd thought we'd be, back in 1991 when we married. We took each others' hands, turned our backs on our youth, and walked away.

It's like this: you can get through the crisis. You can do it together or not, but either way: you won't be the same. The “you” that you treasure with a sentimental tint, the “you” that you hope will be sepia-coloured via Instagram …

By the time you're wondering what changed, that's already gone. The only decisions you can make involve the future. “What do I want?” is the crucial question, and somehow, Ms T and I answered it together, that whatever the changes in us or the world we faced, we'd hold hands and manage, somehow.

It wasn't easy. When we talked this through, tonight, we cried together. Would I love to have her back as the film-star-bride of 1991? Of course. Would she love to see me again, without my grey beard and deaf ears? Ditto.

But we hold on, not to what we were then, but to what we have now. We have a new contract, a new accord, a sword we managed to forge in the fires of crisis.

We have taken each others' hands, and farewelled old dreams. There's nowhere to go anyhow: our parents are all long dead, there's no emergency bolt-hole for us to flee to if it gets too much. There's no childhood bedroom to retreat to.

You can never “go” home. You can only make one.

Growing up is hard, even if you're 50 years old.

Arguing with an SMH Deputy Editor

Since I won't give Storify the Twitter permissions it wants, I've had to do this Tweet-by-Tweet.

I decided to argue climate change action with the Sydney Morning Herald's Deputy Editor, Ben Cubby, today. It became complicated, he says, so I've put the timeline together here, and offer it for others to decide whether I was obscure, circular, difficult, or even particularly trollish.

@niltiac Sydney #climateaction rally was good turnout given downpour, but I don't think it was as many as 10k as reported here http://t.co/1hbGEOPbel

@bencubby @niltiac @cousincat sounds about right to me - surprised they got that many, given the national mood re carbon pricing. (emphasis added)

That's the bit I took issue with. From here, I will not highlight anything except usernames.

@R_Chirgwin .@bencubby I think you're assuming that the journalistic mood about carbon pricing is cognate with the national mood.

@bencubby so many moods, so little time.

@R_Chirgwin @bencubby Let's call it a national 30,000. They're misreading the national mood?

@bencubby @R_Chirgwin who can say?

@R_Chirgwin @bencubby So - is there a "national mood re carbon pricing" or not?

@bencubby @R_Chirgwin hard to say.

@R_Chirgwin @bencubby You said so: "given the national mood re carbon pricing" (verbatim). That's what I'm trying to grasp.

@bencubby @R_Chirgwin it's hard to pinpoint these things specifically. however, i think it's self-evident that people are less keen on these issues.

@R_Chirgwin @bencubby Which brings us back to the protesters. Is a good number on the street evidence for or against your assessment?

@bencubby @R_Chirgwin why so interested in this?

@R_Chirgwin @bencubby It fits a whole lot of my interests: politics, climate, editorial assumptions, argument! :-)

@bencubby @R_Chirgwin so what's your point?

@R_Chirgwin @bencubby You said there's a national mood about carbon pricing. I'd like you to back it, given that the protests offer a counter-argument.

@bencubby @R_Chirgwin federal election result? polls since the election? smaller number at #climateaction rallies this time? they're all indicators.

@R_Chirgwin @bencubby Let's focus on the rally numbers. You were surprised, a moment ago, at the size. Are they now a disappointment?

@bencubby @R_Chirgwin 60,000 seems about right, nationally. but hard to tell - i think most of them are numbers from getup

@R_Chirgwin @bencubby I didn't stipulate 60,000. But surely a successful protest movement suggests "national mood" isn't a monolith?

@bencubby @R_Chirgwin no one said it was monolithic. it has waxed and waned, and will probably continue doing that, id have thought.

@R_Chirgwin @bencubby If there isn't "a" national mood, why base your opinion of the protests on "the" national mood?

@bencubby @R_Chirgwin you've lost me

@R_Chirgwin @bencubby You made a statement citing "the national mood". I'm asking you if the protests count as counter-evidence that such a thing exists

@bencubby @R_Chirgwin can you be a bit clearer.

@R_Chirgwin @bencubby 1. Do you believe there is "a national mood" as you originally said? 2. Does not a significant protest challenge that belief?

@bencubby @R_Chirgwin 1. national mood ebbing on climate change action. 2. the size of protests etc do feed into national feed.

@R_Chirgwin @bencubby See? It wasn't hard. It will be interesting to see how the mood moves in the future.

@bencubby @R_Chirgwin you have a very circular way of talking.

***

OK. By now I will insert myself. I really don't think I'd been that circular or difficult. Hence my response.

***

@R_Chirgwin @bencubby >shrugs< I am as I am.

@bencubby @R_Chirgwin excellent. good for you.

@R_Chirgwin @bencubby The question was simple. Did you believe what you said, and would you back it on challenge? The complications were not mine.

***

Now, I don't think I was circular or difficult or trolling. But I'll leave it to others to tell me whether I'm wrong.

The sound I have heard in your “hello”

It's not about “RU OK?” That happens once a year.

My not-quite-random call to one of my oldest friends – someone I've known since about 1975 or 1976 – was just a “hi, how's it going?”

She was quiet and monosyllabic, which if I wasn't as thick as a plank might have given me a hint. I really am thick, though. I don't get the interpersonal signals very well, and I talk too much anyhow, and when I eventually noticed that I was doing all the talking, except for single words from the other end of the line, I started trying to ask “are you okay?”-type questions.

For which I am as well fitted as a square peg confronted with a round hole, and a small boy with a hammer.

Thank heavens, the friend has by now known me for close to 40 years. And, perhaps, she's as familiar with awkwardness as I am. So somehow we got through the initial miscommunications to a discussion of her children, someone she likes as a friend but doesn't want to sleep with, Ms T's health, and various other things.

Just one of those calls that people make, really: the slightly awkward conversations that old friends might have, when there's no actual news, tailing off to a slightly awkward goodbye-for-now.

And a week later a text arrived that called me “warm and fluffy”, which is a bit of a stretch, so I called again instead of waiting our usual interval, about a month and sometimes as long as a year.

I won't pretend I can reconstruct the conversation, because I got a jolt and don't remember the details.

But somewhere in there, she told me I called when she was working through a suicide-pile of pills.

I have no special, secret magic about suicide prevention. I have a good, healthy, iceberg-sized ego, but really there have to be limits. "You're good, but not that good".

It's about people talking to people.

Communication – making sure that people who might be isolated don't get that way – is a big hunk of making us all feel worthwhile. Wanted, if for nothing more than a “hello”.

The idea that someone might call just because they want to talk to you is something that matters. There's no business-case for the call, no discernible benefit to be had, no plan in the conversation beyond “hello”.

Because – you're worth talking to simply for the conversation. Simply for “the sound I have heard in your hello”. Simply because you're a human with at least one friend left in the world.

That's more than a (my opinion) contrived “RUOK” campaign, and it seems to matter. It mattered to my old school friend, and it matters to me as well. I know who to call if 4am is too dark to see the dawn, because I have someone who gives me (thank you, you know who you are) infinite license.

People with depression are told to “make the call” – send out a shout if they're feeling bad – and I wonder if that doesn't create a problem for them: “But I don't want to be a burden” becomes another reason to be depressed, if you doubt yourself.

But confining communications in the other direction to “RU OK Day” leaves out the rest of the year, when a single incoming call makes the difference.

Which, I guess, explains the point of this ill-directed, probably self-indulgent and certainly not definitive collection of thoughts.

You can't know when or if your call to a friend will make a difference to someone.

You certainly don't have any special expertise in suicide prevention.

What you do have is a bunch of friends who might be happy to hear from you.

So: make the effort. Get yourself off the impersonal feeds from time to time to simply let someone hear your voice. “The sound I have heard in your hello” might be someone's call back from the abyss.

Chemo and Ms T: the background

You know, it occurs to me, courtesy of a Twitter convo, that many of my posts about Ms T's condition have been a little tangential. I've talked about the life we live, and occasionally named the condition or the treatments, but I haven't set down the basics.

So with her permission, I'll put this down so that I have a background to link to when someone asks.

It's an extravagantly-named condition: “Atypical necrotising vasculitis polyarteritis nodosa of the medium and large arteries”. If you're of a medical bent, you'll notice something about that. Every noun and adjective names symptoms and what those symptoms affect, rather than naming a disease.

So let's call the disease “immune system disorder”. In short, whenever Ms T's immune system is sufficiently active, it attacks “medium and large arteries”. It's like you had a kidney transplant and your immune system was attacking the invading kidney – except, of course, that Ms T's arteries are her own.

There aren't so many large arteries left to choose from. Her coronary arteries are just fine, heaven knows how. For the rest? Here's a list.

Right carotid artery – gone. She lives because a bunch of capillaries her body built around the blockage supply the right side of her brain, at about 10-20 percent of normal capacity.

Anterior cerebral artery – gone. If anything blocks one side of her brain, there's no backup supply. She will die fast.

Right renal artery – gone. There's a small collateral blood supply that leaves her with about 25 percent of the right kidney.

Various medium arteries in her right arm and leg – gone. You can't take Ms T's blood pressure on the right, it doesn't register.

Celiac artery – gone and replaced. This was the artery that told us something was wrong, because her stomach and liver failed. That got her to hospital, weighing a little over 30 kg, with broken ribs from falls (I was suspected as a wife-beater until she was conscious enough to defend me!), and toxemia.

Which is why she'd lost nearly every spare kilogram. In our years together, she has been known to complain about her breasts, which are normally a 12DD burden that gives her back pain, but when her body was consuming itself, that extra fat probably kept her alive, since they shrunk to skin-over-ribs.

The only way to deal with Ms T's condition is to shut down her immune system. That means chemotherapy, and the chemical that works best is called cyclophosphamide, and I've documented its effects on this blog here and here, at least, so I won't reiterate it. And it's carcinogenic, which is a nice thing to live with.

Right now? Things are stable. Once, we believed in remission; no more. But we're doing okay, and as I said, the purpose of this post is as a 1.01 for people who need to know the background.

And to everyone who's also on chemo, our thoughts are with you.