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.

 

 

 

 

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.

 

 

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?

 

 

 

Maintaining the Rage

Things they don’t tell you about dementia, number 542: Rage.

Not Mum’s rage. That does come and go – but it always did. It’s hard to tell where Mum ends and dementia begins. I’ve been a target of Mum’s rage as long as I can remember. That’s not new. But it used to go on for months. Now she forgets within minutes. There are upsides.

No, the rage that’s a problem is mine. I want to kick, punch, and scream until my throat is raw. I want to throw things at the world. I want to tear something down. Blow something up. Beat myself senseless.

Do not, at this point, tell me that everything happens for a reason. There is no reason for this. Dementia has no logic, no reason, no plan. Dementia is a senseless, random trauma that crushes the breath out of me even as it eats away the life of my mother.

I want to scream into the face of the world that it’s not fair, but the world couldn’t care less. I go home, go to work, care for my children. I do the shopping, take my daughter to swimming and answer my email, when all I want to do is fling myself at the floor and kick and scream “THIS IS SO UNFAIR!” But life has no time for tantrums.

Break all the records, burn the cassettes

I’d be lying if I told you that I had no regrets

there were so many mistakes, and what a difference it makes

but still it shouldn’t surprise you at all

You know

I said it shouldn’t surprise you at all, You know

Don’t look now but you have changed

Your best friends wouldn’t tell you

Now it’s apparent, now it’s a fact

So marshall your forces for another attack

It was always within you, it will always continue

And it shouldn’t surprise you at all

You know

Billy Joel, Surprises

I am so angry. I hate this. I want it to stop. I want it to end. I want relief. I want to know what’s coming and how we will handle it. I want to pretend it’s not happening. I want someone to bloody well fix it, and now. I want to be held and told it’s ok. I want to push the world away. I want to make it stop. I want to run away. I want to stay home and hide. I want to drown my sorrows in chocolate and icecream. I never want to eat again.

I can’t do this anymore, and I can’t stop. It hurts. Don’t tell me how to help her – she won’t let me. Don’t tell me to remember the good times, there weren’t many. Don’t tell me you’re sorry. Just stand well back while I implode. She would hate this, but she left years ago. There’s no connection. No parent. There’s nothing left but rage and fear. But I can’t walk away. I shouted at her today. God knows she provoked me, but she crumpled like a child.

I need to be angry. It masks the fear, the guilt, and the sadness. All I can do is maintain the rage.

When life hits back

On Friday morning I was excited to be heading to Geelong for a workshop on Diversity in Computing, as part of the Australasian Computing in Education Conference. I have dear friends in the Computing Education Research field, so stealing away from work to brainstorm how to increase awareness of, and interest in, Computer Science was great in itself – especially because I had huge respect for the stars running the workshop – but I was also going to catch up with friends. I was all set for a great day.

I’m not a fan of driving, for the most part. It’s a necessary evil, it seems to me, but since we got a hybrid driving has been much more fun, so I wasn’t even worried about the relatively tedious drive down the Geelong road. But as I cruised over the Westgate, having left early to make sure I beat the peak hour traffic, I suddenly realised that this was my first trip to Geelong since the day my Dad died, over four years ago.

God knows my dad and I had a complex relationship. By the time he died I would go so far as to say it was quite dysfunctional. His death was mingled relief and pain: relief that he was no longer suffering (his long deterioration from cancer had already been traumatic for years), pain that so much went unsaid. The day he died was pure shock.

My sister and I picked Mum up from Ocean Grove, where they had been when he died. He had gone for a walk and died in the street. Mum, who doesn’t drive, was stranded. So we gathered ourselves together, faced the practicalities, and raced towards her, where she sat comforted by a generous and kindly neighbour. I remember Tina Arena, Songs of Love and Loss, coincidentally on the car stereo as we drove down. I remember stopping for coffee at a really odd little drive-through coffee booth near Geelong station. I had chai tea, thinking I had had enough caffeine that day. I remember tears. Worries about the future, especially Mum’s future, and shock. So much shock. I don’t really remember much about arriving at Ocean Grove. I’m pretty sure we didn’t stay long, although I had packed an overnight bag just in case. In truth “packed” suggests a level of thought and planning that wasn’t possible. I had thrown some things into a bag that may or may not have been adequate.

I haven’t been to Ocean Grove since that day. I haven’t even been through Geelong. And even though much has changed – Geelong seems to have grown up somewhat, it is shinier, and more glamorous than I remembered – being there was a shock that I was completely unprepared for.

The morning was fine. I was catching up with friends, talking about work, brainstorming projects. A dear friend who, it turns out, believes in revenge gifting, gave me two very fine bottles of wine to take home with me. I was planning lunch with other friends, before a really great workshop.

But after lunch I felt ill. I thought maybe I had been glutened, but it was different somehow. I went to the workshop and halfway through felt an unbearable urge to burst into tears. For a moment there I was lost. I messaged a friend, scraped myself together, and it was ok.

But it was weird. I haven’t cried for my dad in years. In many ways the trauma of his passing was eclipsed by the trauma of the year before his death, which was truly horrendous. I cried for him. I miss him. But in many ways I miss the father I wished he could have been, rather than the father he actually was.

After the workshop I dropped two friends at the station, and in the middle of light and happy conversation we drove past that coffee place. By this time I was wise to what my confused brain was doing to me, so I was ok. But it was still a shock.

I was in the present, but I was unexpectedly back in that dreadful day at the same time. It’s probably just as well my car didn’t choose to play me any Tina Arena on the way home, or I’d likely have had to pull over and cry. I’m crying now.

Grief has a way of leaping out at you at unexpected moments. I try to be kind to myself when it happens, but the middle of a workshop isn’t really the right time. Sometimes it’s necessary to suck it up, and then write about it the next day with a divine glass of wine, as a form of therapy.

These are scary times. The scariest I can remember. But life goes on. And sometimes it gives you an unexpected beating. But there are workshops, passionate and dedicated people, and good friends with divine wine. There are people to hold you when you fall, and people who will come looking for you if you fall silent. There is hope all around, even when grief seems to be taking you down.

Some days life pushes us over, but we always have the option of pushing back. Push back. Hug your friends. And be kind to yourselves.

 

***this has been posted unedited, not even proof read, as a stream of consciousness grief reaction. It is as real as it can be. I hope it speaks to you. It helped me. You helped me, by being along for the ride.

Holding on tightly

Andrew just left to go to Perth for our friend David’s funeral. I only met David a few times, but we bonded over teaching, and of course over Andrew. Andrew, David, and David’s brother Mike, grew up together. They were brothers in all but DNA. After David and his family moved to Perth in his teens, they were only sporadically in contact but they remained inescapably connected.

And now he’s gone. Andrew packed his things for the flight in my cousin Chris’s backpack, which we inherited when Chris died. Tonight we’ll eat dinner in some bowls that also belonged to Chris. We might serve the veggies with the silver spoon my beloved friend James gave me before he died, so that I would have something to remember him by. I didn’t need the spoon, James has a permanent and dedicated room in my heart.

If Marg hadn’t died a few weeks ago I would call her to touch base around now. I’m wearing the earrings I bought when raiding Vic market with Di way back in first year uni, some years before a car accident robbed her of a future and me of the other half of my brain.

Together, and with many others, they made me who I am. I am built on the foundations of all the people I have ever loved. There are pieces of them embedded in my heart, but they take pieces of me with them when they die. I am broken afresh by each new death, and rebuilt by every friendship.

Each new loss is a body blow, knocking me off balance and off course.

Look down,
The ground below is crumbling.
Look up,
The stars are all exploding.
Hey yeah, hey yeah oh oh
Hey yeah, hey yeah
It’s the last, day on earth,
In my dreams, in my dreams,
It’s the end, of the world,
And you’ve come back, to me.
In my dreams.
Kate Miller-Heidke, Last Day on Earth

Last night in my dreams I was having an argument with my Dad. I woke to find him still gone, and it was equal parts relief and regret. That’s a long story.

Every death interrupts a million stories. But it does not sever those connections. As Pratchett, himself now an echo, wrote: ‘No one is actually dead until the ripples they cause in the world die away…’

Memories remain. Love remains. Even as sadness is overwhelming. My Dad used to say that life was a chronic and ultimately fatal disease. Experience has taught me that the prognosis is acutely uncertain.

So gather your loved ones to you. Take that chance. Make that stand. Give life everything you’ve got. It’s uncertain, and precious, and capricious in the extreme. Grab it with both hands.