Gluten free with bonus wheat

I was tragically disappointed tonight to find that the only place anywhere near us that does gluten free fish and chips appears to have closed down. In desperation I googled “gluten free fish and chips near me” and found that Mt Waverley fish and chips was listed. They didn’t say anything about gluten free on their menu, which always makes me nervous, but I have been pleasantly surprised before. My favourite restaurant of all time, The Smokehouse at Sorrento (now, sadly, also closed :( ), had a whole slew of gluten free desserts that it never listed on its menu.

So I called up Mt Waverley Fish and Chips and asked if they did anything gf. “Oh yes,” they said. “Burgers, souvlakis, and of course fish and chips.” I was really excited. I carefully checked that the chips were cooked in their own oil, to avoid cross contamination (which can make a coeliac surprisingly unwell). “Yes, we can do that,” they assured me. So I shelved my misgivings and ordered a really yummy dinner. I asked for a gluten free burger, having carefully checked that there was no onion in the burger (I am also fructose sensitive, which is true for many coeliacs). My daughter got a vegetarian burger. We got a bunch of other stuff as well, and I repeated that the chips and my burger needed to be gluten free. They cheerily agreed.

When we got there I asked them to be sure that the chips were gluten free. They pointed to the chips, languishing under a pile of – wheat flour battered – potato cakes and said “Those are gluten free.” I pointed out that they weren’t, as they were sitting with things containing gluten (it really does make me unpleasantly unwell), and they apologised and made us some fresh chips.

Feeling quite uneasy now, I checked on the burger. “The burger really is gluten free, right?” “Oh yes, one of them is definitely gluten free.” They were very emphatic.

So we took our food and headed home, where we found it rather difficult to work out which burger was gluten free, and indeed which one was vegetarian. One burger had no meat, just a fried egg, cheese, and some salad. One burger looked very much like a veggie burger, but it had bacon. There was a third burger, which looked relatively normal. All of them seemed to have the same kind of buns, and gluten free bread is usually quite distinctive.

So I called them and asked which one was gluten free. They checked the ingredients and said it was the one without tomato sauce. I pointed out that the buns all looked the same, and they said yes, but the burger was gluten free. The one without tomato sauce was definitely gluten free. By this point I was incredulous (and also feeling slightly queasy, having foolishly eaten some of the chips). I asked again if the burger was gluten free, and again they said yes. And then I asked explicitly about the bread. “Let me check with the manager,” the guy said.

And then he came back. “No,” he said, sounding a little sheepish now, “We can’t do gluten free bread. It’s normal bread.”

By this time I just didn’t know what to say. “I ordered a gluten free burger. You said you could do gluten free.”

“Yes,” he insisted. “The patty is gluten free. But not the bread.”

“I’m coeliac. You could have made me really ill.”

“Sorry about that. You can have a refund if you’re not satisfied.”

“IF? IF I’m not satisfied? You nearly made me really ill. Yes. I do want a refund.”

“You can come to the store.”

“You can’t refund me over the phone?”

“No, only cash.” (I paid with a credit card. Taking my money was easy, it appears. As was trying to poison me.)

At this point I gave up and went to brush my teeth, in the vain hope that I could avoid ingesting too much of the gluten that was almost certainly contaminating the chips. And now I am cooking a fresh dinner, while hoping that I am well enough to eat it by the time it’s done.

I ask you: how is it possible to even be licensed to sell food when you HAVE NO IDEA WHAT GLUTEN IS? WHEN YOU HAVE NO IDEA ABOUT CROSS CONTAMINATION OR HOW TO FEED THE INCREASINGLY LARGE PROPORTION OF THE POPULATION THAT SUFFERS FROM FOOD ALLERGIES?

If that was a nut issue, I have friends who could have died. As it is, coeliacs who inadvertently eat gluten can be unwell for days (as I very likely will be now), and it actually damages the lining of the gut. This is serious stuff. People can get sick. People can die. How can you sell food and not have the first idea about the consequences of getting it wrong?

So next time someone tells you that being gluten free is easy now, you might want to point them at this blog. It is true that a lot of places are very good at it. But the world is still a glutenous minefield for the unwary, and I was not wary enough tonight.

Now if you’ll excuse me I need to go throw up. Maybe I should go back to Mt Waverley Fish and Chips to do it. Bastards. No, not bastards. Fools. Culpably ignorant fools.

 

The brutal glory of term 2

I have whined about term 2 on this blog before. Probably every year since I started teaching in fact, but I’m a little afraid to go back and check. It’s true that it’s a particularly brutal term. We are marking assignments and exams, writing reports (I have 75 of them to write, and to try to make as personal, meaningful, and constructive as possible. My full  time colleagues could have twice that.), and preparing classes for semester 2, which starts on Monday, while we’re still finishing with semester 1. Once we’ve finished writing our own reports we will proof read each other’s, while teaching our normal class load and trying to hit all of the deadlines. It’s winter, we’re all tired, and workloads are just insane, as always.

For me, this term has been even bigger as I wrap my head around a new Head of Learning role, and have the opportunity to make some meaningful changes. I only finished my marking yesterday (apart from a few stragglers), I’ve still got most of my reports to write, and I’m painfully aware of how much I need to get done in the next two weeks, and over school holidays.

And, to be honest, I’m exhausted. When I collapse into bed at night I pass out almost instantaneously. I have nothing left in the tank, and a long, long way still to drive.

Which is why I was wondering whether I need to seek psychological help to understand why I organised a hackathon for today. This is something I don’t have to do. My friend & colleague Victor Rajewski started them early last year, and we have kept them running ever since. We don’t get time in lieu, or any pay, for giving up our Saturday. We have too much work to do to make it a reasonable use of time at this point.

And yet… and yet… despite my exhaustion, despite all of the desperate claims on my time, it was, as always, totally worth it. Three of my alumni showed up to help and to play – two of them graduated in 2012, so they haven’t been my students since 2011, but they still come back and help. The other graduated in 2013. And despite the age range – the youngest attendee was my 10 year old daughter, the oldest was me at 45 – there was no hierarchy. People were sharing skills, taking interest in each other’s projects, and playing games together.

There was hardware hacking, software hacking, and, yes, pizza (some stereotypes exist for a reason). We even got our maker space designed (thanks Jess!). There was the most amazing spirit of collaboration and camaraderie. Some of the year 12s ran workshops (thanks Dylan & Alex!), teaching some practical web skills and some embedded systems stuff.

It’s hard to describe how happy it made me to see people showing up and getting stuck into it. The hackathons aren’t perfect – we could probably use a little more structure and a little less gameplay – but they’re so much fun.

Nobody had to do this. We didn’t have to run it. The students didn’t have to come. The alumni certainly didn’t have to turn up (or collect the pizza – thanks Peter!). But everybody came together to share an interest in tech and maybe pick up some new skills.

I’m so tired. I’ll be spending my Sunday and probably most evenings next week finishing my reports, because I couldn’t do them today. But I wouldn’t have missed today for anything.

Feelings I don’t want to write about

I don’t want to write about this because I am ashamed. I feel a terrible, monstrous guilt, and I’m so busy judging myself that I can almost find no space in my heart to worry about how you might judge me. Almost. But what I’m about to tell you is pretty shocking. You might judge me. I wouldn’t entirely blame you if you did, because I’m certainly judging myself.

But it occurs to me that, although it feels incredibly lonely to me and my family as we go through this, this is actually not a rare story. So maybe there are other people out there feeling guilty, and ashamed, and believing they are utterly monstrous for feeling the way they do.

Maybe baring my soul will help them. Maybe it will help me. Maybe, even now, I’m putting off admitting the truth.

So here it is:

I wish my Mum would die.

Without context, those words are pretty shocking. I can’t quite believe I feel them, much less write them publicly like this. And I condemn myself, so strongly, for their callous truth.

But the truth is, we lost Mum years ago, and we haven’t the luxury of mourning her. Of accepting her passing, learning to live with our grief, and moving on. Because we are compelled to maintain the shattered shell of her brain, and her surprisingly robust body, regardless of how little of her remains inside it.

She doesn’t know her children. She certainly doesn’t know her grandchildren. And she is terrified of what is happening to her. She is unbearably confused and distressed. She wants to go home to her parents – perhaps to a time she felt safe – although even if they were alive she probably wouldn’t know them.

She used to have lucid moments, but I don’t think they happen anymore. She is easier to manage now as some of the rage and paranoia have eroded, along with the last of her personality. She used to remember – or create – fragments of her past, but even those are gone now.

And this is the best she will ever be from now on. Every day she will get worse. Every visit will be more traumatic. And we mourn her even as we keep her alive. We fight her to find ways to take care of her, and she resists them, every one, because it’s all so confusing and terrifying to her.

Every day another small window into ways that we can help her squeezes closed. Every moment she becomes more lost, more alone, less herself.

And all we can do is keep her alive. Even though she died so long ago.

I don’t want this to happen to me. I don’t want to put my children through it. I don’t want to go through it myself. Who benefits from dragging out her terror? From maintaining the trauma that is her – apparently – sacred life?

There is nothing sacred about the rigid enforcement of laws that promote infinite pain and endless sorrow. This is not about the value of life. This is callous, unfeeling, and fiendishly cruel.

We talk about quality of life as though it is something we have control over, but there comes a point where quality of life goes irretrievably negative. Where maintaining this life is no longer the ethical thing to do. Where keeping someone alive is simply torture.

Who benefits from this hell Mum is going through?

Making sense of dementia

I hope you didn’t read the title expecting a solution. Because we are not in a solvable state. Dissolving maybe, but not solvable.

How do you make sense of dementia? How can you explain to someone the profound desolation when your own mother doesn’t know who you are? When she asks you whether she knew your Mum?

How can you possibly convey the heartbreaking trauma of having your 78 year old Mum begging to go home to her Mum and Dad? The Mum and Dad who died 45 and 30 years ago. Of knowing she is ill but being unable to get her to see a doctor?

How can you explain the soul shredding mundanity and frustration of the sheer volume of paperwork and complexity around a million little things like not being able to get her gas meter read, because she doesn’t hear the doorbell and is utterly paranoid about locking the gate?

It’s impossible to describe how agitated she gets when we try to fix something around her house. How difficult it is to do simple hardware jobs when she is overflowing with anxiety about what it means, how it happened, and whether she is going to get into trouble. And hovering over you begging to go home to her Mum and Dad.

I’ve heard people say it’s like caring for a child – that the positions are reversed and the children become the parents. But that’s far too simple. Far too benign. Because children learn. Children have hope. You can explain things to a child. At the very least, children can understand when they have gone too far.

Children grow and progress, but dementia is taking my Mum inexorably down. I lost her years ago, but there has been no funeral. No wake. No flowers. And every time I visit I lose her again. When Dad had cancer I was waiting for the phone call that would tell me he was gone. Now I wait for the next crack in the increasingly empty shell of my mother’s brain.

Imagine not being able to continue, but getting up every day and doing it again.  Imagine a soul as lost and helpless as a child, but as strong and angry as an adult. Imagine losing your mother over and over again. Imagine a death that takes a decade.

 

 

It’s not me, it’s you

We tend to think it’s easy to spot a bully, because bullies are big, evil-looking people who loom over you, shout at you, and flush your lunch down the toilet.

But sometimes, in the real world, bullies are softly spoken, reasonable sounding people who “really are only telling you this for your own good”. When someone takes you aside privately to offer you feedback, is it because they are offering you an opportunity to improve without publicly pointing out your faults, or is it because any discerning, impartial audience would instantly detect their words as the poisonously corrosive barbs they are, in fact, intended to be?

Sometimes bullies even feel like friends, at first. Right up until you become a little too outspoken, a little too successful, or the bully just has a bad day.

So that’s the conundrum: How is it possible to learn to differentiate between genuine constructive feedback, and criticism that is both false and malicious? That is, in fact, bullying?

I wish I had the answer to this one. The one, definitive answer that makes all the pain, all the self doubt go away once and for all. (Although, of course, with no self doubt at all we’d be ravening, arrogant, destructive monsters. A little balance would be a fine thing.)

Sadly I don’t think there is one definitive answer. I think that those of us who care about trying to be the best we can be are always going to be easy targets for the kind of people who want to defuse us by persuading us we’re not good enough.

But maybe there are tricks we can use to fight back. Not by bullying back – that’s a losing game from any perspective – but by choosing who we listen to rather more wisely. We all have people in our corner. But it’s easy to discount it when they tell you that you’re awesome. We can be too quick to say “She’s just being nice.” or “He doesn’t want to hurt my feelings.”

It’s easy to dismiss your supporters as being biased, while somehow accepting your bully as perfectly accurate. But here’s an important question: Who do you trust? If your bully and your best friend were each telling you the safest path to walk to get through a minefield, who would you believe?

Ultimately, that’s exactly what they are doing. Life can be a real minefield. And sometimes you need someone to guide your steps. Who do you trust to do that? Because those are the people we should be listening to. Not the bullies, the doubters, and the people who would feel much more comfortable in themselves if we were a little less successful. A little less irritatingly good at what we do. A little less of a threat to their self-esteem.

Here’s another way to look at it: How would it make your friend feel, to know that you don’t believe him? How will your bestie react if you tell her you think she’s lying to you? Ahah! Got you by the short and curlies now, haven’t I? What you won’t do for your own good, you will do for someone else’s sake. It’s a fair point though. Those people who are truly in your corner need you to be in theirs, too. Trust goes both ways.

So next time the turkeys are getting you down, ask yourself this: where does your faith belong? In the hands of those who would take you down, or in the arms of those who want to help you rebuild? Who do you really trust? And what would you tell them if the tables were turned?

The day the front fell off

I can’t bear the idea that John Clarke is gone. Goodness knows there is plenty in the world to be disturbed by, and I have been closing my eyes and breathing deeply and, I admit it, turning my face away from the news. But this – this death of a 68 year old I never met – this is what broke me.

John Clarke and Bryan Dawe had a way of taking our lives, our politics, our society, and lampooning them – with straight faces and the driest of wit – so that even the most rabid fan of a policy or faction could see its absurdity, its unfairness, or its incompetence.

I will never forget the hundred metre track from The Games. When we don’t want to answer a question around here, we always say “Not that I recall,” “not to my knowledge,”, or “can I have a glass of water?” They’ve made me laugh until I couldn’t breathe more times than I can possibly recount.

When world events were more horrendous than I could bear, Clarke and Dawe always gave me hope, because not only did they get it,  they could communicate it so clearly, so eloquently, and so incredibly wittily, that it seemed that it had to be obvious now, even to politicians.

Death and I are old foes. He has come too close too often. I have railed against him through long and desolate nights. I have been shattered by him unexpectedly, and I have seen him coming and been unable to dodge him. He has taken people close to my heart, and who knew me inside out. John Clarke didn’t even know I existed, but his death comes surprisingly close, because he meant more to me than I even realised until this moment.

Isn’t that the cruel irony of death? That sometimes in losing someone you suddenly know how much they meant – too late to let them know. I wish I had emailed, or tweeted, or written to him somehow. I suspect I’m not alone in knowing now, in this moment, sharply and painfully, how priceless he was, and how grievous a loss this is to our public life, and our understanding of the world.

John Clarke made the world a happier, more bearable, more intelligible place. He helped us understand it. He made us laugh. He made us think. He made us better.

Who could ask anyone for more?

 

 

 

Wil to live

I went to a talk tonight. It covered Donald Trump becoming president, Climate Change and Climate Change deniers. It covered the post truth world, anti-vaxxers, and healthcare. It covered white male privilege, racism, and education.

And I laughed. I laughed until I almost forgot how to breathe (again. you’d be surprised how many times I’ve forgotten how to breathe over the years).

It took so many of the things that are wrong with the world, highlighted, examined, and derisively dismissed them.

It was a masterclass in story telling. In science, humanity, and compassion. In how to keep going. How to reach each other. How to listen. How to make sense of the nonsensical. And how to talk to the insensible.

It was incisive, but never cruel (although anti-vaxxers might disagree, but anything anti-vaxxers disagree with is worth paying attention to).

It was, incidentally, a lesson in not being late to a comedy show – I think Phill might agree with that, if he can ever bear to show his face in public again.

I love comedy, but I can’t bear the cruel sort. A friend had a bit of a facebook rant today about April Fools’ Day, and I have to agree. We don’t need more tricks. More lies. More fake news. More traps for the unwary. More “hah! I fooled you, aren’t I funny? and aren’t you gullible!”

We need more laughter, but Wil Anderson made it very clear tonight that comedy doesn’t have to be cruel. It doesn’t have to be mean spirited or vicious. Comedy is at its best when it’s clever, and well read, and thoughtful. When art holds a mirror up to life and laughs at it – when we see life as it is and know its absurdity – that’s real magic. And Wil Anderson is one hell of a magician.