Category Archives: First Person

Breaking Up With Social Media and Steering Away From AI

Leave a Reply

If the existing algorithms of our lives brought us to fascism, it might be time to try to disrupt them. I’m breaking up with most of social media, all except Bluesky. You can still find me there. Or here. At least for a while.

My personal history with Twitter is a good friendship gone bad. Twice. Fool me once, goes the saying. Well, I got fooled twice. I dumped Twitter in 2012 or 2013. I was moving in real life, and decided to move in my virtual life too. I was off for about three or four years, enough time to be forgotten.

When I joined up again, I had missed it. It was a good place to get news (until it wasn’t). Later, it became a crucially important place to find information on the pandemic. There has been a strong, science-based, covid aware community that shares information not highlighted elsewhere. That is something I will miss. I will also miss the disability community.

But to stay on means agreeing to the ever changing terms and conditions set out by a billionaire who doesn’t give a shit about regular people. Lots of people left before me. Good on them. Some were migrating to Bluesky which promised to be what Twitter used to be, and I signed up back in the day when you still needed an invite code. Even then, I was loathe to leave the covid conscious and disability communities I had found on Twitter. I didn’t delete my account or start really using Bluesky until recently when the billionaire eliminated the block feature and made agreeing to be part of the AI content scrape mandatory.

I never got into TikTok. That’s not my medium. I’m a word girl. I deleted FaceBook a long time ago. I couldn’t stand seeing my friends spread spam and misinformation. Some were starting to repeat garbage right wing stuff they got from social media. Using that platform, I realized I was witnessing just one aspect of what people now refer to as the enshittification of the internet. I felt like it was doing a lot of people more harm than good. Fucking Zuckerberg.

Then my publisher really wanted me to be on all the things. Some of you may not realize how much marketing authors are expected to do. I was trying to be the get-along-gal, and started an account again. But for all the reach I had, it really wasn’t worth it or meaningful in any way. But it was nice to see photos of friends and their babies again. One day someone who was apparently in my elementary school contacted me and that was all I needed to quit for good.

And I was on Instagram, also owned by Zuckerberg, so what’s the difference? It’s all splitting hairs at this point. Ordering from Amazon, going to Shoppers Drug Mart. Everywhere I turn, billionaires are exploiting me. I know this. I’m not naive.

It’s all ads now anyway. I see the AI everywhere. Even this blog gets AI comments, one of which I let through just to see what would happen. So far, nothing. Again, it’s not like this wee blog goes anywhere. If you’re one of my handful of subscribers and you’ve read this far, thanks from the bottom of my very damaged heart.

It’s a hard choice to break up with the social media you’ve known and relied on for so long. There are all the obvious reasons. I won’t see the baby pictures, find out about literary events and so on.

But this is what really concerns me: I know that fascism thrives by keeping people isolated. In a time when solidarity in our social justice efforts is more important than ever, I was reluctant to remove social media from my own toolbox. But (second but in the same paragraph) in the immortal words of Audre Lorde, “The Master’s tools will never dismantle the master’s house.” Zuckerberg or Musk and their ilk are never going to enable real liberatory revolution to happen on those platforms. Meanwhile, I’m disinclined to let them use me to achieve fascist goals and propel capitalist and consumerist dreams. My personal tipping point has been reached.

And let’s get back to AI for a minute. Apparently, it has free reign now. To be clear, I know almost as little about AI as it is possible to know. I know it stands for Artificial Intelligence and I know that it is not so intelligent. At least not yet. I know that I don’t want my work scraped (read: stolen) to “teach” it. Many of my friends have had their work stolen for this purpose. I probably have too but just don’t know.

Eschewing AI is not talked about much outside of creative circles. It seems anti-progress. Maybe you think I’m a Luddite. Maybe I am. But whatever else AI is or might offer, AI is also another form of colonization. It is not creative and it will never be creative. All it can do is steal and rearrange. And I don’t want it to steal from me.

Undermining my own argument, I will concede that perhaps it is good for the management of information. I read via Eric Topol, a commentator I respect, that it has positive applications in medicine. As a person deep in the medical system now, I see how there is so much to know and often so little time to figure things out. I can see how AI could be helpful.

But there is yet another really important reason to be concerned about AI. Energy and water. We are already in a climate disaster. When my friend tells me she got AI to write a work email for her, I think, “Was that email worth x gallons of fresh water or x amount of electricity?” I read something suggesting we will need more nuclear plants to power AI. Is it worth it? To me, no. I’ll forgo using it.

All of our lives are filled with all kinds of inconsistencies and even hypocrisies. It is how it is. Welcome to 2024. Breaking up with social media and trying to stay away from AI is an experiment in trying to live my values a bit better. Hopefully Bluesky won’t turn out to be terrible too. Happily for me, I’ve found many of the accounts I used to know on Twitter have come over. And I’ll keep writing here, mostly to clarify my own thoughts for myself. If you’re into it, stick around. If not, that’s fine too.

The election is like a cancer diagnosis Part 2

Leave a Reply

So, if the election is a cancer diagnosis, what happens now? Again, I should know.

Like I said in Part One, for most of us, it’s too soon to call in MAiD. (But I defend your right to do it.)

It’s easier to find any fight left in you if you have some help. Some community. Some solidarity. Some fellowship. Some sisterhood. Look for it. It’s there. This is something I know for sure.

But first you have to get up. (I saw this reel this morning, and I liked it.) Getting up might be metaphorical. Maybe you actually can’t get up physically. That’s ok. Maybe you can get up mentally or emotionally.

When you’re ready. But don’t take too long. Because the antidote to despair is action. So get up.

When you get a cancer diagnosis, you need a lot of help. If you’re lucky, you’ve got a deep bench already. I don’t usually go to sports analogies, but this one works. You need people who will drive you to the hospital, drop off casseroles, pick up the walker you’ve had to rent and drop it off to you. You need someone to help look after the kids. That kind of thing. If you’re really lucky, you’ve got some people in your life who will talk straight with you. Treasure them. And when you are able, do the same for them.

But what happens if everyone gets a cancer diagnosis at the same time and we all need the casseroles? Well, look around. There are models.

The disability community has been showing us how to do this forever. Mutual aid built around radical acceptance. That’s what you need.

Look around some more. The climate action folks have been doing this forever. In the most hopeless circumstances, they work. And they have made progress. Look at the progress. Don’t get too mired in the defeats.

Look around. Look at the LGBTIQ community. Solidarity in action, love in action. And look at how to do it with JOY.

There are many other places to look. What they have in common is empathy. Kindness. Grit.

People are already doing the work. You are not alone. Join them, or recommit. Redouble your efforts. Maybe that group you thought was “too radical” is just what you need now. Maybe stop working for people who only want a wee bit of change, just enough to make themselves comfortable. Look for the people trying to make everyone better.

Start a mutual aid group in your building, on your street. Talk to your neighbours. Go to the community centre. Maybe you can be that subversive voice in the knitting group. Do it. Knit little hats for the babies of all the teen moms (there are going to be more and more). I love knitting analogies more than sports analogies. And cooking analogies too. It doesn’t have to be hard or fancy or perfect. It’s ok to drop a stitch. It’s ok to burn the edges of the lasagna a bit. Maybe lasagna was too hard to do. Make something easier. Throw the ingredients on a sheet pan. Keep it simple. Start a knitting group and bring the sandwiches. You are needed. When you have the energy, you are still needed. And when you don’t have the energy, you are allowed to rest. Do what your heart calls you to do, do what you can, and do it until your last breath.

You do not have to accept the unacceptable. The hardest work will be to set boundaries, recognize the gaslighters. You are going to have to let some people go. You are going to have to say no to a lot of nonsense. Fascist-adjacent is just as bad as fascism. Don’t make excuses.

Read Timothy Snyder’s book On Tyranny. Lesson One is “Do not obey in advance.” Do not alter your moral compass to adjust to their misaligned North. You know where North is. It hasn’t changed. Hold fast to your true north.

We are in this together. You are in it with other people. Reach out. Start knitting. Knit this broken world together again in a whole new unexpected shape. Not by yourself. Just add some stitches. It will help.

There is still life after the cancer diagnosis. It might not be the life you wanted or thought you deserved. Grieve. And then, keep going.

The election results are like a cancer diagnosis Part One

1 Reply

The election results are like a cancer diagnosis. I should know.

When the possibility first emerges, you are blind-sided. No. It must be some kind of mistake. There is a period of parsing results. Is it? Or isn’t it? And then, when it is, how bad is it? What stage is it? And finally, will you die?

The prognosis is grim. If 2016 was a concerning stage one diagnosis, 2024 is stage four.

In 2020, you could feel good that you beat that cancer back with a dose of chemo and radiation. But we can never forget that the so-called cure is also toxic. It too will have side effects, which are just effects that you didn’t anticipate or want. You can see now how you let some things slide. Kept eating Doritos. Whatever. The announcement that covid was over, for example, was a red flag. Because it wasn’t. It isn’t. The funding of a genocide was another sign that the cure might be as bad as the disease. It never pays to go into denial about the cancer symptoms.

This 2024 recurrence has metastasized to other parts of the body politic. Those diseased cells have never been isolated and it won’t do you (or me) any good to pretend this cancer will stay confined to a part of the body that we don’t need or can maybe amputate and forget about. The cancer is fascism. It is in the blood and bone now.

The cure, if there is one, will be long and painful. And it might not work. But it’s too soon to bring in Medical Assistance in Dying. I don’t know about you, but I still have some fight left in me and I can be subversive as fuck.

Fuck cancer. And fuck fascism.

For my friend

1 Reply

I’m thinking of you, my friend. You are deep in the struggle and it is the middle of the night. It is hard to sleep. I know you don’t want to wake anyone. They need their sleep. But you are not alone. Many of us are awake with you.

I’m imagining spaciousness for you. Seconds, moments, of ease. Maybe the space between the in breath and the out breath, where there is no work to be done.

These beautiful, troubling bodies of ours. They have needs. We love them like our babies. We are tethered to them and are not ready to let go. It’s okay.

I’m imagining you remembering the children when they were young, how you see them now in the grandchildren and how, even now, you can know such joy.

I hope you can think of one of the most joyous moments of your life. There are so many to choose from. What did it look like, sound like, taste like? What was above you, beside you, in front of you, beneath you? Imagine the floor, the earth, the perfection of gravity. It holds you now. Wrap yourself in the memory like a time-worn quilt just in from the clothesline, smelling of sunshine and fresh air. Or maybe your quilt has just come from the dryer and is just warm enough, just soft enough, perfectly weighted to curl into and rest.

Let’s sleep now, and if we can’t, we will rest.

On Not Getting the Memo

Leave a Reply

There’s a doctor north of Kingston, Ontario, Sabra Gibbens, who still masks and requires her patients to mask. She wrote about it in the Canadian Medical Association Journal. Finding her article feels like finding some kind of rare bird or an exit sign in a corn maze.

Who is this doctor? Can I have one like her too? My GP “mask mirrors” now, which is better than nothing, but with this virus lingering in the air for nine hours, he’s not the only exhaler I’m concerned about.

Who is it that didn’t get the memo? Gibbens or her colleagues? Did she not get the memo to pretend SARS-CoV-2 is over or did her colleagues not get the memo that everyone is still getting sick and maybe part of their job is the prevention of contagious illness? Doctors are supposed to protect their patients, even when those measures bug some entitled cry-babies.

You know I’m losing my shit when I call anyone a cry-baby. But there it is.

I didn’t get the memo to stop caring about Covid. Or I got it and said, “Um, that doesn’t seem right.” At time of writing at least six people I know have had terrible bouts of it in the last two months.

Recently, I talked on the phone with an old friend coming out of six weeks of terrible illness. Too sick to call 911, at one point they were unable to breathe and certain they would die alone. But it never occurred to them that they may have had SARS-CoV-2. They report they are much diminished now. Others are sick but don’t test or even admit that what they have could be SARS-CoV-2. They have a mystery illness that lasts for weeks, and soon after post unmasked photos of themselves in restaurants or at events. I say nothing. Except here.

I remember many years ago when I lived in Calgary, there was an explosion a the Hub Oil Plant, which was not that far from where I lived. (Check out YouTube for some great video.) As the sky filled with black smoke, I started packing. Authorities were doing the “everything is fine” thing, but my eyes and lungs told my brain to flee and I popped the kiddo into the VW camper and off we went, far far away from the fire and the thick black smoke. As always, I was considered alarmist, even by my own partner, but sometimes you just have to listen to that little voice. Mine was screaming. Later that summer we were advised maybe not to eat our garden produce, but even that warning seemed to leak out without approval and was quickly expunged from the record. This was Alberta, after all. Absolutely nothing can be wrong with oil and gas.

Oil and gaslighting aside for now, (but do please read Sarah Kendzior’s excellent book, They Knew) I am similarly unsurprised by medical gaslighting.

It’s awfully difficult for a person like me, trying to live through an iatrogenic heart and lung disaster, to depend on the skill and support of as many doctors as I do, to trust their medical knowledge about my heart and lungs, while simultaneously acknowledging that they did not read the same memo as me.

Maybe I should print Gibbens’s article and tape it to my hospital door. For now, I’m simply grateful she wrote it. Thank you, Sabra Gibbens. Your patients have a real gem in you.

The Heart Wants What It Wants

1 Reply

The heart wants what it wants.

And mine wants a new mitral valve.

But wait, you say. “Didn’t you just get a new valve?”

Yes, I did. Thanks for remembering. An aortic valve. Not quite seven months ago. And then two months after that, I had a lobe of my lung removed. It was (she says in her understated way) difficult.

The many doctors thought I could wait a few years to replace the mitral valve. But, the heart wants what it wants.

There’s a Hail Mary play going on—something about a balloon. But I’m pretty certain the upshot will be another open heart surgery. Time frame unknown.

I accept all well wishes, good vibes, prayers, whatever you’ve got on offer. And I send it right back to you.