Death drawn out

I know from painful, devastating experience that grief is an experience with a beginning but no end. But when the beginning is death, grief only starts once. Over time it attenuates. Ever present, but incorporated into your very being, it does not lessen, but becomes, at least, familiar.

When the beginning is dementia, though, grief starts afresh every day.

Every encounter is a new loss.

Every visit, death stares me in the face. Still breathing, heart beating, but nonetheless quite, quite dead.

I don’t know how to process this. There are no cards or flowers. No ceremonial send off, or celebration of life. There is no date that marks the transition from breath to grief. It happens every day.

Everything she was is gone. Her personality has leached from her brain like the colour leaving her hair. Her face is slack. Only her rage, once her defining feature, sparks occasionally like a dying circuit. A small flash of the malice that once powered her body, now it can’t get her out of her chair.

Her father lay slack in his bed for long months before finally dying, years after he last recognised his only child.

She still gets out of bed, but only to sit by the table, staring blankly ahead. How long until she no longer has the urge to rise? Will she die the way he did, a huddle of surprisingly small bones under a white sheet?

Does she suffer, I wonder? Is there enough left to feel pain, even grief of her own? She doesn’t know me when I visit. Does it matter to her that my visits are rare? That I can’t contain my grief, or my fear, enough to look her in the eye?

I can be brave. I can be strong. I can deal with loss. I’ve had to. But I don’t know how to deal with a loss that goes on forever. That I have carried for a decade and must carry still. I don’t know how to deal with this. I don’t know how anybody could.

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What can’t you see?

On Friday night I was driving home from the physio. I swung out into the main road behind a cyclist,. He was zipping along at a fine old speed, but I knew there was a sharp hill coming up, so I changed into the right lane so I could get past without putting him at risk, and without needing to slow down.

Shortly afterwards I stopped at the lights on that same hill, and although I looked around for the cyclist, I couldn’t see him, so I assumed he had turned off somewhere while I was concentrating on the road. When the lights turned green the traffic moved off, but there was a van in the left lane going super slowly, and the ageing pulsar in front of me was keeping pace with it, instead of speeding up and getting past.

My first reaction was irritation. It had been a long week. It was late. It was dark. I was tired. I wanted to get home. Why was this nufty slowing me down??

Fortunately the physio appointment had been a good one, so I was reasonably relaxed, with none of the back pain that had plagued me earlier in the week. I could afford to be magnanimous, so I refrained from leaning on the horn and instead craned to see if I could work out why the silly old pulsar was going so slowly.

Suddenly I saw the cyclist, slogging up the hill, and realised that the van behind it was getting edgy. The whole picture crystallised in an instant, and it dawned on me that the pulsar was leaving the van room to change lanes, so that it wouldn’t get trapped behind the cyclist, and perhaps put the rider at risk with its impatience.

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The van swung out in front of the pulsar, and the pulsar sped up. The car behind the van was looking twitchy, so I waited until it had pulled out in front of me before I, too, got going.

I was so grumpy with that pulsar, right up until I realised there was method in its snail-like madness. Until I saw the cyclist. And it struck me that this is a truly ordinary scenario, played out repeatedly throughout our lives. Someone does something we don’t understand, that gets in our way, and we flash out a grumpy reaction before we see the bike.

Sometimes we never know what’s going on. Sometimes the bike is invisible to us. But that doesn’t mean it’s not there. There can be so much going on in other people’s lives that overflows into our own path, but is not directed at us at all. Whether it’s grumpiness, sadness, or simply something that’s slowing us down, it’s worth remembering that we never see the whole story.

If I hadn’t been so relaxed, I might well have leant on the horn – startling the cyclist and precipitating who knows what?

I hope that next time I get slowed down for reasons I don’t understand, I can remember the pulsar and the bike, and take the time to understand the situation. To give the other driver the benefit of the doubt. To assume that there’s a reason I can’t yet see. And to practice a little patience and forgiveness.

After all, I might need that forbearance myself tomorrow.

Don’t mind your own business

After yet another celebrity suicide, I’ve seen my twitter feed light up with people looking out for each other. With people saying “don’t wait for people in distress to reach out – reach out to them!” With people pointing out that grief, depression, and trauma all make reaching out difficult, if not impossible.

For all the bad stuff we hear about twitter, it can also be an extraordinarily supportive and positive place.

At the same time I’ve been thinking about everything that’s happened over the last few years, and how tough it’s been. What has kept me going?

There have been times when things got so bad I lost the capacity to reach out. I was just hunkered down, breathing, coping with putting one foot in front of the other, and navigating each day.

In all that time, something happened.

People checked in with me.

One dear friend messaged me on Mothers’ day, knowing how much emotional complexity that day holds for me. He wanted to be sure I was doing ok, and that I knew he was there for me. He made me cry, but in a good way.

I got messages from my former students, telling me I had made a difference.

I got unsolicited, unprompted messages from friends telling me that they had no doubt I would change the world.

New friends championed my cause. Old friends rallied around me.

My bestie picked me up off the floor a hundred times, and lifted me high, even though we don’t live in the same state.

Each message was a small thing. But all of those small things made a web that held me. A safety net that stopped me falling. A collective hug that held me upright through the toughest times. It’s easy to focus on the negatives – the bullies, the nay sayers, the people who don’t believe you’re really up to this.

But reaching out to others has an extraordinary impact. Telling people when they’ve done a good job. Noticing the person who tries that little bit harder. Checking in with someone on days you know they’ll find tough. That stuff matters.

It’s so easy to get caught up in the bad stuff. But reaching out to others can change their lives. Today my back muscles were spasming and I was incredibly sooky and miserable. I could easily have spiralled into despair. But an overseas friend offered to help my charity get off the ground. Another friend had ideas about how I could make the message more effective. I reached out to people and they reached back. They had my back. In small ways they reminded me that I mattered.

It’s easy to forget how important it is to connect. But all those people who reach out to me have saved me, lifted me higher, and kept me going more times than I can count. It’s hard to reach out some days. But it’s that web of interconnection that keeps us grounded and holds us together.  Somedays it feels like we are unbearably insignificant. That we don’t matter. That we aren’t important.

One way to be important is to make other people feel important. To be the person who reaches out. To be the single piece of positive feedback someone gets in a day. To reach out. Because reaching out makes people reach back.

Are you feeling insignificant today? Reach out. There’s a universe out there waiting to reach back.

Call them on it

I once worked in a workplace where one of the managers was abusive, misogynistic, and unreasonably aggressive – but only when challenged. Everything was sunshine and light until he felt threatened, and then he went off like a firecracker. When I first felt the full force of his rage I took it to a range of senior people who all said “Oh, that’s just the way he is. He does this. Don’t take it personally.”

In a weird way I felt a little sorry for this man, because it was clear no-one had ever called him on his behaviour. He really didn’t seem to recognise that what he did to me – and apparently repeatedly did to others – was not ok.

But this, it seems to me, is how we get to where we are: women attacked, raped, murdered, and collectively told: be more careful. Don’t be alone. But also don’t be with the wrong people. Don’t date the wrong men. Don’t wear the wrong thing. Don’t be in the wrong place at the wrong time.

Because entitled, aggressive, arrogant behaviour does not get challenged, and so it escalates. Because no-one puts the brakes on. No-one says “hey, dude, that’s not ok.”

Anti-bullying programs in schools now increasingly focus on bystanders, encouraging them to speak up and step in. It’s time we implemented this across our society. Not just in schools, but in workplaces, in public places, and in the home.

People who bully, harass, or talk others down? Call them on it.

People who are needlessly aggressive? Call them on it.

People who make jokes about hurting others? Call them on it.

People who victim blame? Call them on it.

People who make homophobic jokes? Tell them it’s not funny, and not ok.

Same with racist jokes. Don’t let it go. Don’t turn away uncomfortably. Call them on it.

When people use their power to demean, silence, or repress others, call them on it.

It’s easier to walk away. To avoid people like that, or just to ignore their behaviour. But silence is consent. “No comment” might as well be a loud YES. We need to stand up and assert ourselves to make this stop.

I know so many kind, loving, thoroughly decent men and women. People who care about others, and who would never do anything like this. I have the most beautiful friends – older than me, younger than me, less than half my age – who look out for me. But they can’t be by my side 24/7. All of us take the easy path sometimes, and stay silent about behaviour that’s just plain wrong. We let it go. We don’t want to interfere. We say it was just a joke.

By letting that go we are putting everyone at risk. Every time we stand by while someone runs someone else down, we say it’s ok, and we make it worse. It’s time we stopped blaming women for being attacked. Time we stopped telling people not to take it personally. Time we started standing up for what’s right, and demanding that everyone, regardless of race, colour, sexuality, gender identity, religion, or indeed refugee status, gets treated decently. Always.

 

 

How your “choice” not to immunise could kill

This post was co-authored by Riley, who is currently undergoing chemotherapy for Hodgkin’s Lymphoma.

Imagine you’re 18 years old. You’ve just finished school, and have plans to travel abroad with friends and begin university. And then one fateful day, you get diagnosed with Hodgkin’s Lymphoma. Cancer. Your plans are derailed, studies delayed, and due to treatment you can’t even work. The whole world begins to fall apart as you lose your independence and have to rely on the help of family members to look after you, and help with simple everyday tasks like driving to hospital.

And you might think something like driving to hospital is trivial, but it’s another story when you’re on three different types of anti-nausea drugs to deal with the side effects of chemotherapy. Not to mention the cognitive effects of the chemo’ itself.

Between the long sessions of chemotherapy, you can at least get out of the house and away from the hospital. Visit friends, do fun stuff, right? Except you can’t. Chemo’ has immunocompromised you. Your immune memory is lost, and for much of the time you are so low on the white blood cells that fight infection that a simple cold could be catastrophic.

The worst part is, you don’t know what you’re immune to anymore. Tetanus, rubella and HPV. Which vaccinations are still effective? What about measles?

Measles. Which we have the means to all but eradicate, if everyone is vaccinated.

Measles. Which is making a comeback.

Because people are “choosing” not to vaccinate their kids.

Because they have “done their research”.

“Research” that has found a thousand scaremongering sites about autism and vaccine side effects, and inexplicably none about how measles can kill.

Measles. Can. Kill.

It can kill their unvaccinated child. But that’s their “choice” (would it be their kids’ choice, I wonder?).

But it’s not your choice. To deal with chemo, and a thousand bizarre side effects. To deal with the isolation and the fear. Now you’re trapped in your home, by those people who have “done their research” – and decided that their unfounded fear of autism is more important than your life.

Your choice not to vaccinate can kill. What kind of choice is that?

 

 

Touch and Go

Last week I went to New Zealand for the weekend (as you do). I’m not normally prone to this kind of crazy travel, but I had the opportunity to attend Kiwi Foo, which is a most extraordinary meeting of crazy, passionate, richly varied, and intensely motivated people who want to change the world in some way. An invitation to Kiwi Foo is not something to be turned down.

I am in the middle of starting up a new and incredibly important enterprise, which I will blog more about shortly, but it means my days have been a whirl of intensely stimulating and slightly terrifying meetings, hideous paperwork, administrative complexity and delicate negotiations. I am loving it, but also way out of my comfort zone and hence emotionally stretched.

So in this state I headed off for Kiwi Foo, which I knew to be important both for me and my fledgling organisation, and where I knew no-one at all.

I was excited to the point of utterly wired, and just a smidge nervous (I am only admitting to the smidge. You may interpolate as you will. I’m not going there.). I arrived late at night and suffered some hiccups trying to get to my motel, but I managed in the end – somewhat rain soaked, and less than impressed with the rather dodgy motel, but I slept all the same. The next morning I met a bunch of strangers at the airport with whom I had arranged to share a car, and they were lovely.

Then we got to the conference where I registered with more lovely people, availed myself of coffee and started a range of conversations with fascinating, entertaining, and very lovely people. There was a whole lot of loveliness. Oh, and I checked into a lovely Airbnb with a stunning view, and the walk to the conference venue from my airbnb was (wait for it) lovely. Vertical. But lovely.

Did I mention, though, that I was already emotionally stretched? Friday night was awesome, and newcomers like myself could not have been more effectively & generously inducted into the ways of Kiwi Foo. I was made to feel welcome and valued and all good things. By the time I got back to my accommodation I was buzzing, and also feeling so emotionally stretched I was twanging. I really could have used a hug at this point – touch is very grounding for me – but I didn’t know anyone well enough to ask. So I continued to twang.

Saturday started well with a lovely breakfast and real coffee. (This is more important to me than it should be.)  The second session in the morning was a fascinating discussion about the ethics of AI, and there was such a large group we split into three smaller groups to talk it through. When the groups got back together to share our thoughts, I spoke for our group, on the condition that the others promise correct me or add to my comments if I missed anything. I covered the conversation in a fair bit of detail (brevity never having been my modus operandi), and then asked the group if I had missed anything?

To my surprise they gave me a round of applause, and then something magical happened. The guy standing next to me, who I had talked with a bit but barely knew, put his hand on my shoulder and said “You did great.”

It was such a small thing, and so fleeting. Just a brief hand on my shoulder. Just a hearty “nice work” with accompanying shoulder pat.

But we don’t usually do that anymore. We are afraid to touch. As a teacher, I was told emphatically I must never touch my students, lest it be taken the wrong way. We have pathologised touch. Rather than teaching about welcome and unwelcome touch, we have rewritten society’s rules to make almost all touch unwelcome, except between family or lovers.

That touch, though, stilled the twanging and made me feel wholly a part of the group. It grounded me and allowed me to relax into the conference and make the most of what was a truly extraordinary time. I doubt that kindly soul had any idea of the impact of a fleeting moment of contact, but it made a vast difference to me that weekend.

We are so busy guarding against inappropriate touch that we forget that touch is fundamentally important to our health and wellbeing.

All the feels

I’ve been pushing myself pretty hard lately. We’re packing up Mum’s things and selling her house, and the family holiday home. That hits pretty hard. I’m starting a wild and crazy new not for profit enterprise that I’m not quite ready to launch yet but will be soon. It’s a huge deal and there are lots of parts of it that are waaaay outside my comfort zone, but it’s already getting a lot of support and it’s an idea whose time has come. So yay. But also OMG!

My baby (please don’t tell her I called her that) is starting year 7. My husband is travelling a lot for work. Next week I’m going to Science Meets Parliament. I am trying to be a good Mum, a good daughter, a good friend, a good Executive Director. All the things to all of the people. And sometimes it feels a little bit overwhelming. (Other times it feels massively overwhelming, but let’s not think too hard about those times!)

Recently I visited my former school’s swim carnival and got mildly mobbed by my students. (Hush. They are still my students. They always will be.) It was lovely to see them, and to catch up with my former colleagues. I won’t, as it turns out, be working a long way away, so I can still drop by, and not entirely be a stranger, but gosh, it hurt tearing myself away from them. And I only managed to catch up with a handful of them.

I love teaching. And I get such a buzz from hanging out with those amazing kids. Who are actually not kids but grownups with more poise, resilience, and potential than I can even imagine.

Some of my former year 11s are presenting their Computational Science Projects from last year at Lorne Genome next week, and they are justifiably stoked at the chance to present their work to this eminent audience. Their work is incredible. They have totally earned this opportunity.

It’s making me a little sad, though. I left all that. I left it because I believe with all my heart in what I have set out to do. But it still broke my heart when one of my students looked at me today and said plaintively “Why did you leave?”

I wish I could do all the things. Be everything to all the people. And keep working with these extraordinary young people who will go on, I tell you now, to utterly transform the world for the better.

Sometimes when you’re busy putting one foot in front of the other, you forget how far you’ve come, and how hard you’re working. And how much you’ve achieved.