Top of the list

I have had a lot of decisions to make lately. There’s been a huge amount going on. I’ve been finding it hard to sleep, and causing myself quite a lot of stress. There’s been a lot of guilt. A lot of second guessing other people’s reactions.

I was unloading this on the other half of my brain yesterday via messenger, and she was asleep at the time. Which turned out quite well, because I switched on my “What would she say?” filter, and had a revelation: almost all of my stress was around the impact of my decisions on other people, and fear of the way they would react.

But it’s my life.

For a long time now, my happiness has barely made my list of priorities at all. It certainly hasn’t been at the top.

And because I haven’t valued my own happiness, I’ve become increasingly toxic to the people around me. I’ve been grumpy. I’ve been disorganised. I’ve been letting people down.

I’ve been trying to be all things to all people, and nothing to myself.

I’ve had severe plantar fasciitis in my right heel since June. In July I was referred to a sports doctor with the promise that it was fixable. In all that time I have not made an appointment to see the doctor. I just didn’t have the time or the headspace. I’ve been so busy worrying about everything else, and trying to fix everything else, that I’ve been putting up with quite intense pain rather than make some time to get myself sorted. And if you’ve never had plantar fasciitis, count yourself lucky, because the pain is truly astounding.

And it has made everything worse. Because I’ve been in pain. I’ve been grumpy. I’ve been over the edge stressed. And nothing I’ve done – at work or at home – has been as good as it could have been if I had made the time for some self care.

We are taught to be selfless. We are taught to look after other people. We are taught that selfishness is bad. But we do need to practice a little selfishness to stay functional. It’s like fitting your own oxygen mask before you help others. If you have passed out from lack of oxygen, you can’t help anyone else. And if you have broken from lack of self care, you’re no help to anyone around you.

So today, rather than head into work early as I had planned, I have stayed home. I have finished my tax and done some paperwork. I have made an appointment to see the doctor tomorrow and get this heel thing sorted. I am determined to make the time to do the necessary exercises to put it right. And now I’m going to go and have a coffee and breathe for a bit, before heading in to work on time.

And maybe, just maybe, I can put myself back together if I do a bit of this every day. Because thinking about what’s best for me means I can be at my best for other people, too.

 

 

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Making that move

On Thursday I put my mum into a nursing home. It did not go well.

The human mind is a strange beast. Even in the absence of dementia (and I don’t think I qualify for a diagnosis just yet, although sometimes it certainly feels as though I do) , the brain tends to paper over the cracks of reality and try to shoehorn the world into something that makes sense.

So even though my mother doesn’t know who I am… even though she talks about how she lives with her parents (who have been dead for over 30 years)… even though she says we went to school together… even though she had 3 raw sausages and a handful of strawberries in the microwave and was calling them dinner… even though she forgets that my dad is dead… even though she says the same things a hundred times in one 10 minute conversation – each time thinking it’s the first… I thought she was in some way still… her. Still… I don’t know… normal, for some twisted and barely comprehensible meaning of the word.

So the morning I put her into the nursing home, I dropped by her house around 10am, and told her that we had bought her a treat. That we were taking her to a hotel for a few days, so that she could enjoy some luxury. And it was plausible, because the nursing home really looks like a hotel. Things have certainly changed in the aged care industry.

She was excited, and happily fussed about, trying to get ready, and wondering what to pack. “It’s so unexpected, I didn’t know this was coming, did I?” she would say, at least once a minute.  I’d reassure her it was a surprise, she’d shove something random into the back and then say “Gosh! You’ve thrown me. I didn’t forget, did I? I didn’t know this was coming?”

So far it was going better than I expected. “We’re just going to stop at a cafe, mum, until the room is ready.” “Oooh, lovely! Are we going to your place?” “No, we’re just going to a cafe, then to the hotel.” “Ah! Ok. Are we going to your place?” and so on, around the merry go round.

While we waited for our coffees, my husband, Andrew, took some key photos and personal things to the nursing home, to try to setup the room to look familiar.

“I’m a bit flustered. What’s going on? I didn’t know this was coming, did I?”

As Mum got more agitated, I texted Andrew. “Run for it, she’s getting anxious, we have to move.”

The home staff could not have been nicer. They got us a cup of tea, while Mum admired the decor and said how posh it looked. But when we got to her room, things started to go rapidly downhill.

“Why is there a single bed? Where will you be? I don’t want to stay here on my own!” the questions were coming thick and fast, and she was starting to get really freaked out.

“I want to go home! You can’t keep me here!! Take me home! My parents will come and get me!”

The staff came to try to help me settle her, and brought us another cup of tea. Typically, now the threats came. “I’m going to call the cops! I’m going to tell them you brought me here without my consent. WHICH IS A FACT! You can’t keep me here! I’m not sleeping in a single bed! I’ll fall out of it! THIS IS CRUEL. HOW COULD YOU LEAVE ME HERE ALONE? This is so cruel. How could you want to leave me here alone? I’m not nuts. I’m going to call the cops. You’d better take me home, or I’ll call the cops!”

And on it went.

A truly lovely staff member named Lea came and persuaded Mum to go to lunch before she came home. She settled at a table with a lovely old guy and was soon chatting happily, but every time she looked at me she got agitated and started shouting about how she wasn’t staying. I made an excuse to get up from the table and suggested to the staff that I should go. In a move worthy of a slapstick comedy, the staff sneaked me out while mum wasn’t looking, and I scuttled downstairs feeling like a criminal.

Lea looked at me as the tears started to flow and said “Don’t you worry.  This isn’t unusual. You might have to bring her in 5 or 6 times before it works.”

The horror of that vision nailed me to the floor. I had barely survived doing it once. No way could I do it again.

So let the light guide your way, yeah
Hold every memory as you go
And every road you take, will always lead you home, home
It’s been a long day without you, my friend
And I’ll tell you all about it when I see you again
We’ve come a long way from where we began
Oh, I’ll tell you all about it when I see you again
When I see you again
–Wiz Khalifa, See You Again

 

There followed days of screaming and trauma. I was craven – I didn’t go back. My sisters spent a lot of time there, and when someone is with her she is generally almost calm, but constantly asking when her parents will come to get her. Left to herself, though, she freaks out. Nights are the worst, but there’s no actual good time. I have to keep reminding myself that it’s only been a few days. It can take weeks for a new patient to settle. There’s hope.

But now I know how much my own brain has been papering over the cracks in my Mum’s behaviour. This frightened child – crying for her parents to come and rescue her, while she shouts about calling the cops – this is not my Mum. I knew she was impaired. I knew there wasn’t much left. But I really wasn’t prepared for the descent into madness that the unfamiliar surroundings would trigger.

She wasn’t safe in her own home. This is the best possible place for her now. But it feels as though the only thing left that was truly her was bound to the shell of her home. Taking her out of her home feels as though, in trying to save her, we have lost her completely.

 

Another farewell

Every year we farewell the year 12s with a valedictory dinner and a whole host of other celebrations. Because I teach at a senior secondary school we only have them for 3 years, and I don’t take year 12 classes, so I only ever teach them for 2 years at the most.

But they’re formative, those years. They lay the foundation for an almost unimaginable future. For growth, and change, and becoming someone new. Someone better. Those years together are the start of something significant. For me, at least.

Every class teaches me more than I thought possible. Every student changes me, and helps me grow into a richer, more complex human being.

We are all the sum of our experiences. Of our interactions. The people around us shape us every day.

How lucky am I, then, to be shaped by these extraordinary young people?

From the ones I travelled with, who made me so proud, and looked after me at least as much as I looked after them. To the ones who wrote every program in the craziest way possible.

From the ones who spoke up constantly in class with great enthusiasm, with amazing ideas and fresh perspectives, to the ones who spoke rarely but had extraordinary things to say.

From the one who nailed the subject without ever being able to come to class, to the one who made every function recursive, just to see if he could.

From the ones who pushed me to find a better explanation, to the ones who explained new things to me.

From the one who gave me a sonic screwdriver because he thought I’d looked down lately, to the one who gave me a Dr Who cookbook “because you just had to have it.”

From the ones who coded like maniacs before they ever took my class, to the ones who were meeting code for the first time and rose to the challenge with bravery and brilliance.

From the one who built drones to the one who built amazing websites.

Every one of them changed me, shaped me, and gave me the precious gifts of their attention, their enthusiasm, and their hard work.

We did amazing things together, and they will do far more amazing things without me.

They may not technically have been my students this year, but in my heart they’ll be my students forever. Some will stay in touch, some won’t, but I’ll always remember them. And some day, not too far away, I’ll hear what they’ve achieved and I’ll be as proud then as I am now to say “They are my students, and they’re extraordinary.”

A place to stand

There’s a thing called the Holmes Rahe stress scale. It’s a list of life events – both positive and negative – and associated scores that gives you an idea of how much stress you are currently dealing with, and therefore how likely you are to get sick. Naturally it doesn’t include everything that could possibly be a cause of stress, but it’s an interesting exercise nonetheless. The associated research suggests that a score of over 300 leads to an 80% chance of getting sick in the near future. Last night I  calculated just the big stuff going on in my life at the moment, and found I scored 420.

When you factor in all of the things that aren’t listed on that scale – like lying awake at 4am trying to work out how you will persuade your demented, no-longer coping Mum into residential care when she has spent her entire life determined to avoid such a fate – my score should probably be a lot higher.

All that tension means that my temper is on a hair trigger. It’s easy to blow up over stuff that I know really doesn’t matter, though it drives me over the edge in a heartbeat. It’s important to remember that the reason I am so close to the edge may not be related to the thing – or person – that threatens to tip me over it.

The interesting thing about finding myself in this whirl of incredible stress is that it concentrates my mind wonderfully. I have no choice but to prioritise, and focus on what really matters. I can’t afford to be darting about, so I need to find the right place to stand.

I don’t want to waste time and energy on things that don’t matter.  Reasoned debate, and having my perspective challenged, is more important to me than ever, because when I get stressed I have a tendency towards tunnel vision. I value the friends who will challenge my views immensely.  But I’m finding that more and more debates, especially online, are not reasoned.

It’s hard to put my finger one exactly why, but there are “debates” that make my skin crawl. I find myself pushed into defending things that I did not, in fact, say, and lambasted over positions that other people are hypothesized to have taken. I get setup as the fall guy for whole segments of society with whom I am not actually associated, and who often don’t even exist. My words get twisted, and my ideas ridiculed. The goal is to win – to assert dominance – rather than to honestly debate ideas. We’ve all seen it. And we’ve all stood by and let it happen.

I recently complained privately about this behaviour on a mailing list, saying it was disappointing that the group didn’t call it out and make the mailing list a safer space. And even as I hit send, I realised that the group was merely a collection of individuals, and if I was going to complain about nobody calling it out, I didn’t have a leg to stand on unless I called it out myself. So I did.

It wasn’t easy. I was already under extreme stress, so the idea of picking another fight was literally sickening. After I sent my response I fretted that I was opening myself to more abuse at a time when my resilience was already at rock bottom. What I got, though, was an outpouring of support and measures to make the group less toxic in future. I wasn’t the first person this guy had bullied on this mailing list, but because I found my place to stand, I will be the last. I wish I had called his behaviour out earlier, when he was targeting others. There have been many times, I am ashamed to say, when I have stood by, shifting uncomfortably, unsure how to help without making things worse, while people have been rude, hectoring, aggressive, and unfair, towards others.

It’s hard, because if you challenge this behaviour, you become a target yourself. You get accused of being unable to handle debate, of being unwilling to hear a point of view that’s different to your own. You get called a snowflake, or politically correct, or fragile. And in a particularly brutal twist, you wind up accused of exactly the kind of behaviour you are standing against. You get told you are shutting down debate, overly aggressive, and horribly unfair.

The hard part is that it’s really hard to judge and quantify this stuff, and when your words are twisted you wind up fighting accusations based on things you didn’t even say. So you have to work hard to keep your eye on the ball, and not get distracted by the flying red herrings. You have to take a deep breath, get a sanity check, and make sure that everything you are saying is true to your own values. If you stay true to your values, you may misstep at times, but you need never be ashamed.

The greatest thing that can happen at this point is that someone backs you up, either publicly or privately, and calls bullshit on the slippery, manipulative twisting of your words. That twisting is a form of gaslighting, and can easily make you doubt yourself. So if you’re not keen to engage publicly, lest you become a target, the next best thing you can do is to support someone privately. When you’re being accused of all kinds of nastiness, to have an objective voice go “nope. you’re on the money!” can make all the difference in the world.

Edmund Burke is famously quoted as writing “The only thing necessary for the triumph of evil is for good men to do nothing.” When we ignore, excuse, or dismiss bad behaviour of any kind, we tacitly approve it. Whether privately or publicly, I think we need to take a stand. To draw a line and say “You don’t get to be rude or aggressive here. Debate ideas all you want, but only if you treat everyone with respect.”

I’m trying to be the change I want to see in the world. I fail a lot, but at least I know where I need to stand.

The brain that destroys itself

There’s a lot in the news these days about how the brain can cope with injury, rewiring and recovering using neuroplasticity – the ability of the brain to remodel itself.

If our brains are neuroplastic, then it seems to me that dementia is the opposite. It’s some kind of corrosive substance that eats away patches of the brain with random, impersonal cruelty. Faster then neuroplasticity can possibly manage.

How else can I explain that my mum tells me the same story, every time I see her, about her Dad sitting on a seat that didn’t even exist 30 years ago when he died?

That it is fixed in her head that there is a swimming pool in a nearby property because it had a “Danger, Swimming pool under construction” sign on it for a few months several years ago, when they were digging out the underground garage. The house has been finished for a long time, but the fictitious swimming pool remains front and centre in what’s left of her brain.

Me, though… I am gone. Well mostly gone. She knows she knows me – today, wonder of wonders, she even knew my name, which is rare – but she asked me if I knew her children: Sally, Jane, and Kerrie.

When I arrived at her place she told me she wouldn’t be living there much longer. I asked her where she would go, and she said she had parents nearby.

A bit later she told me her parents had died and that’s why she was living alone. I don’t know if she remembers my Dad at all. I didn’t have the heart to ask. Anyway, it changes from moment to moment.

Why does the swimming pool stick in her head, when I am gone? It’s not long term and short term, or early memories vs late. It’s far more random than that.

We went to Red Brick, as usual, and Chris and Bruce were lovely. I don’t know how I would survive these visits if it weren’t for them. Within the space of a few minutes she said she hadn’t been there for years, and that she goes there often.

As the visit went on and she bounced back and forth through time like a confused pinball, I think Chris could see I was struggling. When he brought me my coffee he gave me a pat on the back that nearly broke me. Sometimes when you’re only barely keeping it together, someone being nice to you can tip you over the edge, have you noticed that?

She is deaf as a post and doesn’t hear one word in five, but it doesn’t matter because the words she does hear mostly don’t make sense to her. She has got to the point where she tends to fill in the conversation in her own head a lot of the time, which is almost restful. I try to let it all wash over me but it breaks my heart and pulverises my brain. Being with her is devastating and exhausting, and I feel as though I am losing myself in her frantic confusion.

Mum doesn’t see me anymore, whether I am there or not. And maybe it shouldn’t matter. Even before dementia took her away, she never saw me clearly. I was never who she wanted me to be. Maybe now I am easier for her to accept. As for me, I struggle to wrap my head around this new reality. My mum is dead, and I don’t know what to make of the stranger who inhabits her skin. She is dead, yet she dies a little more every day. How do you process that?

Sometimes Mum peers through the fragments of her personality and I can tell she is terrified by what’s happening to her. When I leave, she says fearfully “I didn’t do anything wrong, did I?”

I reassure her as best I can, and I cry all the way home.

Close to home

Let’s be clear: The current hot air around marriage equality in Australia is not a debate. The term “debate” implies rational discussion on both sides. There is no debate here. Just as the video going around about the Safe Schools anti-bullying programme peddles outright lies about the content of the programme, the “debate” around marriage equality consists of conservatives screaming “but think of the children” and other unrelated, emotive cries, and progressives saying “it’s a human rights issue”.

There is no place for debate here. There is nothing to debate. It’s like saying racial segregation needs to be debated. Nope. It really doesn’t. According people basic human rights should never be up for debate. You don’t get to declare me more, or less, worthy of human rights than you are. And I don’t get to do that to you. Because we are, or are trying to be, a civilized society that believes in justice.

There is no way to “debate” this, without saying that gay people aren’t full members of society.

The chances are that this ludicrous postal vote will come down to marketing. Who has the best campaign? Who mobilises more people to vote?  It will come down to who has the most persuasive arguments.

But there’s one argument used on the left that makes me a little sad. It’s probably effective, but that makes me even sadder. It’s this line: “I have a loved one who is gay, that’s why marriage equality is important to me.”

It makes sense that we care about things that hit close to home. But this is why the Australian government is still getting away with torturing refugees, and why marriage equality is not a done deal. Because human rights are only important to us when they are being denied to someone we care about.

As it happens, I do have loved ones who are gay. Given the numbers, we almost certainly all do, whether we know it or not. But that’s not why marriage equality matters.

Marriage equality matters because without it we are telling gay kids that they are less than straight ones.

Marriage equality matters because without it we are telling gay couples that their love is less than straight couples’.

Let’s turn that around: Marriage equality matters because gay people are people just like straight ones. Marriage equality matters because a gay relationship is just as committed, just as valuable, and sometimes just as broken, as any straight relationship. Marriage equality matters because we need to prove to gay kids that they are fully paid up members of this club we call “civilized society”. Marriage equality matters because gay kids, gay adults, and gay relationships matter, just the same as straight ones.

Not because it’s close to me, or close to you. Because love should be celebrated, and people should be valued. Your sexuality is not relevant to anyone you’re not trying to go to bed with. It should not be the deciding factor in any other decision anyone else makes.

Marriage equality matters because people are people, and love is love.

 

 

 

This everlasting twilight

There’s a huge amount going on in my life right now. It’s all very exciting, and every day brings a new challenge, a new opportunity, and often a few things that make me – let’s be honest – squeal. Just a little. One of those things is the Superstars of STEM programme, which is an awesome opportunity to learn how to get the message of STEM and Computer Science Education out there into the world. I’m so thrilled to be a part of it, and I have a feeling it’s going to open a lot of doors. It’s incredible.

Even before the Superstars were announced, I was getting amazing opportunities to speak to scientists and create collaborations. My work has started to snowball in a way that means I get to pick and choose the best opportunities for my students, and I have to prioritise the things that will have the biggest impact. Professionally I seem to have stepped up a few levels in what I can achieve. It’s making me a little breathless. I’ve just hit the end of term 2, and right when I should be collapsed in a heap moaning about how exhausted I am, I find myself leaping around like the energiser bunny, making things happen.

Just as I was putting the finishing touched to a presentation this evening, I had a sudden urge to call Mum and tell her all about it. When my best friend died in a car accident I felt like that all the time – I would go to call her and then be hit afresh by her irrevocable absence. Eventually that settled, but with Mum it’s so weird. Because she’s not dead. Physically she’s actually in pretty good shape. But there’s no telling her things. There’s very little “her” to tell.

The other day she rang me (which I didn’t think she still knew how to do), and it took me 5 minutes to get her to understand my name. (Yes, you read that right. She called me, but she didn’t know who she had called.) When I used my family nickname she didn’t understand it at all. Once I spelt out my name she got it, but still didn’t know I was her daughter.

On the surface, we had a perfectly sensible chat. She told me she was thinking of retiring.

(She hasn’t had paid work in over 30 years)

She told me she hadn’t told her family yet.

(what does that make me?)

She told me she was thinking of travelling abroad.

(She gets lost 2 blocks from home)

We’ve lost her.

But she’s right here.

She looks like my mum.

She even sounds like my mum.

She’s right here.

But she’s gone.

That sharp pang of grief. The coming to grips with losing a loved one. It’s a dreadful thing. I know it too well.

But this? This everlasting grievous twilight?

This is the sharp pang of grief renewed every time I see her.

This is a new loss every day.

This has no end in sight. No relief. No closure.

Oh, I know they will come. But who knows when? There could be ten more years of this. Of having her right here. And losing her over and over.

So I can’t tell her. I can’t hope that she might be proud of me. She was sad when I left academia and became a teacher. She thought it was a step down. Maybe now she could see how far I’ve come. If she could still see anything at all.

Instead we share this everlasting grievous twilight. And I try to turn my face towards the sun.