Elusive Sleep and Disrupted Time

Anyone would say I’m doing well. I’m healing, thank the great goddess. But. It’s hard work and by 7pm, I need to lie down. Sometimes that happens before 7pm. The nights are long in recovery. Much as I yearn for sleep, a little unconsciousness, a brief vacation from pain, I don’t sleep.

I have trouble falling asleep, thanks to a combination of pain and a new mechanical valve that ticks. I’m trying to get used to the sound, but at present it is like a dripping tap. It keeps some part of my brain in a state of wakefulness and watchfulness. Will it tick again? Yes. Always. It will still tick after I die. It’s fast. More like a loud clock than a dripping tap. It should be consoling; it is proof of a working valve. I meditate on making it my friend, my reminder that everything works now. This will take time.

When I fall asleep, it is not for long. Shifting my position means waking up. I’m up every hour, uncomfortable, and think, “How can it possibly be only 11:30?” Or 1:30. Or 4:30. But that is the time and there is more night to get through. Sleeping, like everything, feels like work. This is a hard truth of recovery. Instead, I would like the night to have 6 or 7 hours of blessed oblivion. If only. Instead, I get a series of short naps. If I’m lucky.

This probably sounds familiar in some way to many folks. Our sleep is off. I know this because there exists a booming industry dedicated to helping us sleep. From pills to podcasts, there are a lot of people ready to use capitalism to help me sleep. Sleep hygiene is a big thing. Meditation apps have whole sections about sleep.

We can’t sleep.

I once read an article that our practice of sleeping in one long block of time is a new construct. In pre-capitalist times, people had two sleeps—-the big sleep and the little sleep. In between, they would get up, look around the cave or the farm, stoke the fire, check the animals, have sex, snack. When capitalism took hold, the factory owners wanted people more productive and made their nights shorter by saying 8 hours of sleep in a row was the right way to sleep. Right for who? It didn’t take long for millennia of natural sleep patterns to be disrupted forever. But I sense that if left to our own devices, (and if we turned off our devices) many of us might go back to a big sleep and a little sleep. My broken sleep might be a good thing. It might be anti-capitalist. I like that idea.

Related to my poor sleep is my poor sense of time. Since my brain injury in 2016, I’ve struggled. Now I’ve had four general anaesthetics in under a year. That’s hard on anyone’s brain. I simply don’t follow time anymore. Don’t ask me the schedule. I don’t know. I cannot know. I use ALL the tools. Calendars, reminders, alarms. Those devices that plague our sleep have their uses. And I have my husband reminding me too. I’m lucky.

However, like my inability to sleep, I don’t think my inability to track time is just a “me problem” anymore. I sense that our collective perception of time has gone off. How can we possibly have lived through five YEARS of the pandemic? (Some find it easier to just pretend it’s over. Maybe denial helps them sleep.) How can it possibly be less than a month since the global order fell apart? (That is what has happened.) How can I have gone into the hospital in an era when the United States was an ally, and come out when it was a threat? Too much happens in a week, a day, an hour. Tick. Tick. Tick. It’s constant. It will continue after I’m dead. Exhaustion has taken hold and even sleep doesn’t seem to help.

To wake up tired is an awful thing.

Best to stay focussed on recovery, to let these ramblings belong to the night, and give the day to the little things we can do to get better and to take what action we can to keep our communities strong. Something to plan while I’m not sleeping. It’s 5:36. Maybe I can get another half hour of sleep.

Fingers and Toes Crossed: The end of Jane’s no good very bad year.

This story has gone too far. There are too many plot crises. It is, simply, unbelievable.

I’ll try to do this quick. In November 2023, it became apparent I would require heart surgery. My heart was damaged by radiation treatment I received to cure cancer I was diagnosed with in my 40s. As they prepared for surgery and did all of their tests, they discovered my lungs were also damaged by the same radiation treatment. I had lung cancer. Given the state of my heart, they couldn’t operate on my lung and vice versa. It took a while for the medical team to figure out a safe way to move forward. (In fact, for a short time, I was told that there was no safe way to move ahead, nor would they if they didn’t think I would live two years. I spent several weeks believing nothing could be done.) Fast forward: open heart surgery to repair one of my valves in March 2024 and lobectomy in early May. Two back to back major surgeries. Another valve would have to be repaired, but that was “in the future.”

The future came fast. My recovery peaked in August. The second valve was failing and on January 16, 2025, I had a second open heart surgery to replace the second valve. Then, the unthinkable: they had to go back in and fix a problem that happened in that surgery. A week later, I had another sternotomy. This surgery did not have to touch my heart, but had to be done. Trust me: I wouldn’t have done it if I didn’t have to. That was Saturday. Now it’s Wednesday. I’m sitting up beside my bed. Typing.

It’s a miracle I’m alive. I’m going to settle for that now. Thank you to everyone who has kept me alive and a special thanks to all the friends and loved ones near and far who have kept me in their thoughts. Every time, I felt the Operating Rooms positively crowded with your good vibes. It helped.

Here’s the really wild part: This is not my story; it’s a story I keep getting pulled into. I hope it is ready to let go now. I have things to do, words to write, a garden to grow, a bike to ride, people to love.

A photo I took along Dallas Rd. In YYJ. The Straight is in the background but the real star of the show is the dark and moody sky.

Moody Sky

Living the Stockdale Paradox

As surgery approaches, I have things to say.

I want to rail against how long it took to get here. There was time wasted, time that sapped my strength and energy. I have feelings about that. I try my best to put it to rest. To be at peace with it. But crisis brings issues into focus. I’ve come to understand in a deep way that I was neglected as a child. This childhood neglect has coloured my life, what and who I care about, what causes I fight for, and how I react to neglect today. It shaped me. As all our childhoods do. This is good learning for me. It explains myself to me.

I used to joke about the neglect I experienced and say things like “I was raised by wolves,” or say the neglect was benign. It was not. It’s good to be clear about that. I can be at peace with it while still knowing it is true. I don’t have to pretend it didn’t happen to live a happy life and do my best to be a good person.

Anyway, the time wasted in getting to this surgery is a trigger. It falls into the category of neglect. I have taken it hard. It’s important for me to know that. I don’t have to pretend it didn’t happen to survive this.

For a long time, I’ve had this quotation from Admiral Jim Stockdale taped up near my desk. “Never confuse faith that you will prevail in the end—which you can never afford to lose—with the discipline to confront the most brutal facts of your current reality, whatever they may be.” Recently, I learned this quotation is so famous that it has a name: The Stockdale Paradox. Stockdale was a prisoner of war. He knew about brutal reality.

The brutal facts of my current reality are daunting. But I know them and I live them at the same time as I believe I can overcome them. I am optimistic. I have experience overcoming. I can do it again. Being rigorously truthful about what it is I face is an essential part of what I have come to understand as a practice. Like meditation. Or deep breathing. Or yoga.

Unfortunately, my practice of being brutally honest about the conditions I face, my full embrace of the Stockdale Paradox, is often misread as negativity or pessimism.

On the contrary. My optimism is grounded in reality. My survival depends on truth-telling. And I will survive.

The thing I want to say is that all of our survival depends on truth-telling and on confronting brutal facts. Know them. Believe them. Whether they are personal medical disasters, like mine, or social and ecological disasters that each and every one of us face, confront them. Know them. Believe them. And believe you will prevail. Denial is the killer. It prevents us from taking appropriate and timely action.

Kind freinds have sent words to me. One said the word “valiant.” I like that word. Be valiant with me.

See you on the other side.

A Heart Too Open

I’ve been in my health crisis for over a year now. I think it was November 2023 that I learned for certain I would need heart surgery. So much has happened since then, even I can hardly remember it all. Soon I will have a second open heart surgery. It’s getting closer.

For weeks now, I have thought my surgery was imminent. It needs to be soon. But then it is not. I get slower. I try not to alarm anyone so I say I am like an old turtle. This is not a frightening image. But I am getting anxious. I have felt this way before and I know what this is.

As time goes by, the term “open heart surgery” becomes literal. My heart is too open. I feel too much. Everything is sharp. Especially words. After all, I’m still a word girl. This morning, I read the phrase “bed blocker” used to refer to elderly, vulnerable patients in hospital awaiting long term care. How awful is that? Truly heinous. This is how frail people are viewed? I guess so. This is, therefore, how I am viewed. I am a wrench thrown into the machine, an ailing human screwing up the system, a scheduling problem.

People don’t understand the liminality that illness brings. They can’t fathom vulnerability if they’ve always been well. They fear suffering more than anything, believing it will be unendurable. They cannot imagine joy can break through. So they turn away. First from suffering, then from any pain at all, then from discomfort and eventually even from mere inconvenience. I understand. To be inconvenienced is one step closer to discomfort, one step closer to pain, and one step closer to suffering. They want a buffer. This is how I have come to understand ableism. It’s part of the buffer. When I see it this way, I can forgive people’s ableism. But that doesn’t mean I don’t expect people to do better.

We are all human. We are all frail. We are all vulnerable. Suffering is inevitable. It is as inevitable as joy.

I’ll write again in a few months. Meanwhile, I’ll be attuned to joy. I hope you will be too.

Breaking Up With Social Media and Steering Away From AI

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

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.