Canadian social practice artist working with participatory performance, ecological systems, and community storytelling. Works span installation, performance, writing, and socially engaged projects.
I drove through sunset into the night, fleeing the family I’ve had almost all my life, and the complex snaggle of pain and dysfunction we exist in. Snaggle. My Mama used to call the biggest tangles in my hair ‘snaggles’, as she carefully brushed them out. She tried to be gentle, but it always pulled. I’d close my eyes and allow her hands to pull the pain from the back of my head. Darkness. Let it go.
As I drove the highway from my dysfunctional step-family to the home where I once lived with my mother, the darkness fell on me like a soft quilt. I remembered her hand on my back as I’d cry myself to sleep when I came home from my Dad’s house, as a child. But her hand isn’t there, anymore. Tears streamed down my face for all the pains I can’t relieve; all the anger I’ve lived under for so long but can’t escape, and for my mother, who died of a brain tumour not two years ago, and now my step-mother has one too. But it’s not the same. Nothing is ever the same. And as I shook the tears away, gripping the steering wheel until my fingertips were numb and my eyes burned, I shouted at the darkening road; the lines of white headlights streaming by on my left and the red blaring taillights in front of me: “Mama!! I need you!! I want you back!!”
But she wasn’t there. Only the darkness came. The same darkness that took her away. The same darkness that used to wrap me up under my shaky brass bed at my Dad’s house, when I was a child. The darkness that settles on my sister’s brow when she finally falls asleep. The darkness that sucks the light out the window and promises tomorrow might be better.
The other night, in too much pain to breathe, I took my partner to the beach, to save myself. “We missed the sunset,” I said, as we drove. “It’ll just be dark.”
He never blinked, but said calmly, like the slow-growing dark had sucked the power from his voice, “that’s OK. It’s not important.”
We walked down to the beach, stepped over the logs that confront the end of the path, and found a forgivingly-hard sandy spot, between the many rocks. It was already too dark to see if we might be sitting on seaweed or garbage or a child’s half-eaten hotdog, so we felt around in the sand with our hands, before settling our bums. I lay back, then, and watched too many satellites going by, among the stars. I mourned for my childhood, when we still thought satellites were interesting. I mourned for my childhood, when the pain of snaggles could be brushed away; when the pain of my Dad’s house could be washed away by the relative safety of my Mama’s; soothed by the resting of her hand on my back.
Somehow in adulthood nothing is so simple, anymore. Everything is a snaggle and too complex to even look at, nevermind pick apart. The darkness gently softens the sharp edges of that snaggle, so we focus only on the line of fading light at the horizon; the setting sun far beyond it, calling the darkness along the earth’s surface, and our mind, along with it. The darkness settles more and more, deepening and obscuring and eventually obliterating every twist and knot of the snaggle, until we lay on that forgiving, hard sand, and I said to my partner in that beautiful darkness, “we don’t have to go home. We can just sleep here, on the beach.”
Another satellite seemed almost to meander between the stars, and my partner said quietly into the night, “I think I’d be too cold.”
The darkness is temporary, for most of us. A place we can go for solace. A place where the things we cannot fix are muted for a while and our eyes can recover from the cold light of the world we inhabit. It’s a place to heal and grow and love and cry. It’s a small place, for a moment, when we close our eyes, and sometimes it’s a big huge nothing that consumes us. The darkness slipped my mother into a forever-dream, where cancer is a figment of some brightly-lit imagination. My step-mother isn’t going there, yet. She’s fighting with her eyes open and a blaring white compulsion to save her daughters. Like the headlights streaming through the darkness, beside me. On the highway. Going the opposite direction. I am going into the setting sun. I am going into a long quiet night in the home I used to share with my mother. I am going into darkness.
Isabella Post, my great great grandmother, in 1863.
Trauma.
I write a lot about trauma, especially indirectly, because learning to understand and heal from it is my life-long journey. In fact, it seems to be at the core of many people’s life-long journeys. My partner only very recently found out that his grandfather, whom he lived with as a child, was a prisoner of war for a few years in the mid-to-late 40’s. How that may have affected his father, him, and our children is really unknown, but there are some hints. And my story is full of these hints too.
Why hints? Because none of our parents really talk about their own or their parents’ traumas. We’ve grown up guessing and wondering, and often hearing tiny pieces from aunts, uncles, and distant cousins. I think that our parents’ silence is perhaps part trauma response, and partly their way of protecting us. All valid, but now we know that dealing with the trauma is an important part of healing from it, and so for our own and our children’s sake, we’re slowly picking it apart.
My grain buckets. 2026.
Look at these buckets of food. I live in a 2-person household. I do cook all our food, but some of these take years to go through, and they did even when we still had two hungry teens living at home. So am I a prepper? A hoarder? Just plain crazy? Maybe all of the above, but also, I’m the product of my grandparents. I had six grandparents. Let me tell you about them. I only have a few bare facts, gathered from sparse partial stories of parents, aunts and uncles, but combined, they explain a lot.
My birth father’s mother was born to Ukrainian war refugees, trying to survive in the Canadian Rockies, during the many global hardships of the early twentieth century. By the time she had her own kids with her Irish refugee husband, in the late forties and early fifties, she had developed a knack for hoarding all kinds of things. When she died, she had so many bottles of hair-set; so many folded pink towels; so many, so many of all kinds of things. I have this tendency, as well. What if I might run out of something?!
My other father’s mother had her first baby, my aunt, during the Dutch hunger winter of the second world war. She told me that she had to sneak into neighbours’ fields at night to steal tulip bulbs to keep herself, my grandfather, and my infant aunt alive. There was so little to eat, but she saved the can of cocoa she’d had before the war like it was a beacon of hope. When I was a kid in the eighties, that pre-war cocoa still sat on our fridge. The ancient cocoa is gone now, but I buy cocoa in large quantities and store it in that can.
My mother’s mother lived through the great depression as a teen and young adult, in South Dakota. Her future husband, my grandfather, lost his family ranch around the same time. Then just when she was learning to cook and care for her growing family, and began moving about to various states, following her husband’s engineering career, the Dust Bowl arrived, and so did the second world war, albeit not in mainland America. My grandpa departed to do his bit for the war, and she was left to feed her youngest children, alone. There’s quite a bit of resentment in my family, I think, about some of her apparent coping mechanisms, but she did raise five children, and so did my grandfather, and now, here I am nearly a hundred years later buying twenty-pound bags of grain, because I just think that’s normal.
I imagine almost everyone in the world is at most a fifth-generation survivor of existential mass crisis. All of us are carrying some kind of trauma and surviving due to coping mechanisms that may also be detrimental to us. How many of our medical conditions, especially autoimmune, are due to our intergenerational traumas? What kind of species suffers endlessly from the effects of war, environmental devastation (by our own hand) and other selfish acts, and then, in blind trauma-induced ignorance, rage, narcissism or whatever, repeats the same acts every few generations?! Well… humans, apparently.
Thinking about how difficult it’s been for me to get even the vaguest handle on what’s happened in my own family, I have asked myself often why my parents don’t talk about these things. I see their own challenges and don’t want to make them worse. I can absolutely understand why not talking about it has been an effective coping mechanism for so many; how triggering the painful memories is not an option, and even how our parents protected us from these histories, intentionally. I also understand how necessary it is to start talking, though. I understand how the protection our parents gave us also became an empty hole where our own coping mechanisms could grow unfettered into addictions, isolation, and self-hatred, because we didn’t know where they came from, and couldn’t address them.
Connection is the cure for trauma. Yes, this likely means talking with therapists and others who can help us navigate the potholes and hills on our road. But it also just means loving. It means being open and honest and vulnerable; teaching ourselves to trust, again; to see others as *like us* instead of foreign. It means slowly working through our joys and challenges in community, so that we can learn, collectively, to build a society that we won’t need generations to heal from.
When I sit with my friends or my partner and talk about the things we don’t know; the fears we have for our children and our parents; for our future selves, and we dream up solutions in the form of utopias that almost seem possible… we’re healing. But more importantly, we’re loving. We're actively building that society where healing comes free with our first breath, and the love-founded voices of our parents coo, “welcome to the world, little one; we’re on this ride with you.”
Me at age 2-1/2, 1978.
“If intergenerational trauma can alter DNA, why can’t intergenerational love?” ― Alicia Elliott, A Mind Spread Out on the Ground
It was summer; probably July, and so hot I was hiding in the house with my baby dressed only in a diaper, fanning us with damp washcloths, when Mum appeared at the front door. With a basket of kale and lettuces in one arm, a partly-eaten zucchini in the other hand, and sweat dripping out from under her straw hat, she said, “you’re going to have to get a handle on the weeds in your end of the potato bed”. She took a big bite of the raw zucchini in her hand and awaited my response.
“Oh. OK. Why are you just eating a whole plain zucchini?”
“I was hungry.” She said, as if it was a silly question. “Here.” She took another zucchini out from under the leaves in her basket and handed it to me.
“Thank you, Mum.” It was warm from the sun, but when I sliced it open, the inside was cool and refreshing.
I was thinking about this the other night, as I handed my partner Markus his dinner: a big bowl of fresh snap peas I’d just picked from the garden. Nothing more. Why would we need more? We have tons of snap peas right now, and really they contain everything we could want for dinner: protein, carbs, vitamins, and so much deliciousness. Later we felt a hole in our stomachs where processed food likes to be, so we ate a storebought bagel. We do grow all our own veggies and eggs, and most of our own meat and fruit, but we can’t really grow grains here, and we can’t grow junk food. Also, Markus loves bananas, and I love imported cheese. And both of us love a frozen pizza or storebought bread when we’re just too tired to make something more… which is at least once a week!!
We used to aim to be self-sufficient, but over the years our ambition changed. We raised our children, grew our garden and skills, and now live just the two of us again, with a quarter-acre regenerative veggie/flower garden, two cats, one rooster, eightteen hens and their many annual offspring, and about fifty billion weeds. We still want to be self-sufficient, but the meaning of that term has changed for us. We realized it’s more about community and mindset than it is about production.
First of all, we really can’t grow grains. We tried. About ten years ago we turned our rectangular lawn into a field of hull-less oats. (Awesome! We thought. We’re gluten free and we eat tons of oats; we can feed ourselves all year!!) Well… we live in a beautiful little rainforest clearing on the west coast of northern Turtle Island. We don’t live on the prairie. So we did actually manage to harvest a whole bucketful of oats (maybe a sixth of what our family consumed in a year), but it turns out hull-less oats still have hulls, and they’re basically impossible to remove. We didn’t enjoy our oats mixed with what felt like fingernail trimmings. And we discovered we could grow far more in that rectangle of yard if we grew crops that actually want to be in this ecology. Then we found out that some people just inland from us are growing oats quite successfully, and we can buy from a small local farm in a different ecology, that’s growing what we can’t grow. So now that’s what we do: We grow all kinds of brassicas, lettuces, squashes, cucumbers, potatoes, garlic, onions, celery, beans, peas, and many many flowers and fruits, and we buy our grains from farms a bit further inland.
We also learned that community isn’t just about the other humans around us; it’s about ALL the other beings. Most obviously, we understood that it’s important to entice and support wild pollinators, and since that just means planting lots of flowers (preferably native varieties that native pollinators will be drawn to), it was an easy and enjoyable adjustment.
Next we discovered the importance of weeds. With exception of a very small handful of troublesome invasives, most weeds are not only OK to leave in the ground, but very important. We started pulling out the invasives and leaving the edible and non-troublesome weeds. They shelter the soil and keep water in the ground. They feed the soil both by pulling nitrogen down into it, and by composting themselves there. They attract all kinds of insects, birds and other small wildlife. And we’ve found they even support our growing plants like trellises! And when they crowd out the veggies we’re trying to grow, we eat them ourselves or feed them to our chickens. They’re just a part of the ecology of our garden, and the food on our table.
Then mushrooms. Putting deciduous wood chips in some of our garden paths, and into garden beds that needed a bit more bulk or aeration meant making space for the mycelial network that supports our plants! We did put winecap mushroom spore into the chips so we’d have lots to harvest and eat for ourselves, but the mycelial network also moves in from the forest that surrounds our home, and that means we need to care about the trees! We learned that different areas of our yard actually have extremely different microclimates, depending partly on their proximity to the creek, but also on which trees are close-by. We ended up with a xeriscaped garden of fennel, strawberries, rhubarb, parsley, wild ginger and various flowers that have now been perennial for over a decade, right under our sequoia! I’d love to say that we are just so dedicated that we tailored everything we did to the specificity of the soil, trees, weeds and other features in each area of the yard, but… I mean really. Doesn’t this sound kind of overwhelming?? It is definitely overwhelming for us, so we simplified: Diversity. That bountiful garden under the sequoia was the result of just planting lots of diverse things and seeing what survived.
We just encourage diversity in everything, and accept that everything is an experiment. Things die, and they feed the soil; crops fail and other crops succeed more than expected. I have no idea what species of insects live in my garden, but I trust that the huge diversity of both insect and plant species I see means there are fewer devastating infestations. And over time this has proven to be true: the only pest we deal with regularly in our yard is slugs. We’ve learned over the years that some veggies grow wonderfully in some areas of the yard, and not in others. We’ve had fruit trees die and tiny shrubs become gargantuan and overtake their respective garden neighbourhoods. We don’t really understand the complexity, but we appreciate the signs of it, and try to manage the challenges that do happen without harming the garden community they happen in. That’s basically our job, now: Trying to live and work in harmony with the ecology of our garden in a rainforest, which is also our home.
This past weekend we hosted people at our ecology-centred regenerative food garden, to talk about growing food mindfully and in harmony with our surroundings, and someone asked about growing for CSA boxes. I *love* the idea of Community-Supported Agriculture boxes: you grow food, and community-members subscribe for a weekly box of produce from their local farm. I know a few people who have done this, and there always seems to be one common challenge: how to grow enough of the foods customers want to see in their boxes, while not giving them too many surprises. This leads me to the biggest thing I’ve learned about growing food: It requires a particular mindset, that many of us have now lost.
Earlier this month, when the chickens had been laying up a storm, and then we had a rainstorm and had a surprise crop of massive winecap mushrooms, we enjoyed a quiche of mushrooms, garlic scapes, fennel stems and parsley. (Yes, fennel-stems are delicious, as long as they're not too tough yet!)
It’s not just about “eating seasonally”. It’s about adaptability – flexible thinking. A successful CSA business requires a customer base that’s happy to receive surprises and work with what they get. It also requires farmers who know what’s valuable and how to take surprises and make them exciting for customers. An adaptable local-food mindset is about understanding where food comes from, and enjoying what’s available. Which may or may not seem “seasonal”, especially with our constantly-shifting weather patterns, these days. It’s not just about only eating fresh tomatoes in the summer; it’s also about accepting that some years there just aren’t many, and some years there are way more than we expected. We all know about too-many-zucchinis. But I’ve had a couple of years with too few! Those years made the bounty of other years feel much more wonderful, and it’s pure delight to pull frozen shredded zucchini out in winter, to bake with. Some years we get so many mushrooms we have to dry them for winter; other years we get a tiny handful and treasure them immensely. Often the mushrooms are full of fly larvae and we have to eat only the tiniest ones, before the flies get them! And always, always, we leave at least half of them to spore out on the ground, so we’ll have more mushrooms, later.
Growing our own food, or even truly eating locally or seasonally means accepting that we can’t have any old food any old time, and also being willing to adapt to what’s currently available. Which may be entirely unpredictable. It means that we may suddenly find ourselves in a greens-drought in the middle of summer, and end up pulling out preserved greens from last year, just when we least expected to! It means developing skills we may not have yet, like farming practices, food preservation, and cooking commonly-discarded parts of the produce. And most importantly, it means becoming curious and actually *wanting* to discover new things; new ways of being. This is not only the mindset that makes living off of regenerative farming possible, it’s also a mindset that brings a community closer. When we are compelled to feed ourselves as well as possible, as locally as possible, and as ethically as possible, we inevitably have to rely on others to help us meet our needs.
I absolutely love the opportunity to call my neighbours and tell them I have extra eggs. And likewise, they understand that there won’t be any extra eggs when the chickens are moulting, or when it rains, or snows, or when there’s a heat-wave. The neighbours understand that our chickens only lay when they’re happy! And they love eating happy chicken eggs. Every year we get a big bag of corn from the neighbours with the flattest, sunniest yard, where corn loves to grow. And sometimes we get a pot of honey from the other neighbours. When one of my hens goes broody I tell my chicken friends, and we all anticipate the brood, together. When a chick dies, or one of our treasured hens; we console each other.
This afternoon my brother and I sat on opposite sides of our parents’ red currant bush, filling bowls – plunk! plunk! plunk! – and talking about the drought, rooting cuttings, different areas we grow things in our yards, and just generally sharing ideas. We swatted various species of flies from our legs, crawled around in the grass and creeping buttercup, and listened to the birds, waiting to come take their share of the berries. Then we hugged goodbye and went to our respective homes for dinner and the most delicious red currant desserts.
Growing food means celebrating life in community. I see inklings of change all the time, and many tiny changes make big change. It feels to me like our society is growing to love the food we eat; to love living in a diversity of people, plants, and our ecology, and to love each other. What a beautiful world we’re creating!
The audio version of this story is available on my MakerTube.
Dear Little Emily,
You’re about to finish elementary school, and Mum will help you throw the biggest most amazing party you’ve ever been to. You’re going to invite all of the grade sixes and sevens!! Rad! You’re going to spend a month choosing the absolute coolest music, and the coolest foods and drinks, and you’ll decorate like your life depends on it, because, well… you’re about to go to high school and you really feel like it does!
It’ll be a gorgeously hot summer afternoon at the end of June, and the cedar tree will be casting shade on the home-milled cedar siding that almost covers the green and white metal of the trailer you live in with Mum, Pappa, and your little brother, Adrian. Mum and Pappa found a sign that says “Phantom Rickshaw” and hung it on the front of the trailer, as a joke but also a token of pride, I think, that you live in this converted double-wide. At eleven years old, you don’t share their enthusiasm, and are starting to feel slightly ashamed of your home, but still going to make the best of it for this party! Even though Adrian is there. And he’s little. Mum says he is welcome to attend your party because it’s his home too. Blah. Mum says also that he’ll always be your best friend, which at the coolest-party-of-your-life seems hard to believe of your little brother who just turned eight, but at least your friends think he’s adorable.
You’ll set up the boxy silver ghetto-blaster between ferns on the bank under your bedroom window, its cable plugged into an orange extension cord that coils up the skinny peach tree and into your bedroom, where it’s plugged in right beside your bed. Mum will bring out the beautiful shiny-plastic salad bowl of pinky orange punch with ice cubes, and place it between a haphazard collection of cups and plastic camping glasses, on the table on the lawn. You’ll have desperately begged her to buy plastic cups, but she’ll have refused, saying it’s a waste of money, when we have enough cups and glasses, already. Still. The table she sets for your party will look amazing, all covered with bags of chips and crackers and cheeses. Real marbled cheddar cheese that you’ll be proud of, because you know the Dutch cheeses you normally eat wouldn’t impress your classmates.
You’ll hang crepe paper streamers in the yard, and blow up balloons until your chest hurts. Twice. You’ll put on your best outfit, trying hopelessly to emulate Cyndi Lauper, and Mum will even let you paint your eyes with blue face-paint. Nobody will know it’s not real makeup!
The classmates will arrive to the not-actually-blasting sounds of Madonna tumbling down the fern-covered bank onto the lawn, where kids will all just start eating and dancing, like they’ve done this a million times before! Like parties like this are what the world is made of. Adrian will be munching on chips, and sitting on the bank observing your party. You like to imagine he looks up to you and your friends. Not everything will be perfect, of course; you’ll have a little moment of quietly singing “It’s my party, I can cry if I want to!” because the love of your eleven-year-old-life is dancing with somebody else, and one of the older kids will wash her hands in the punch. You’ll think that’s hilarious, much to the annoyance of Mum, who will seem to take it as a sign that the party is getting out of control.
But in the end, there you’ll be, deep into the evening dark, curled up in sleeping bags on the quiet lawn with your best friends and Adrian. The stars will move their slow arc just over the silhouette of firs, hemlocks and cedars that fringes the yard. And you’ll feel wonderful.
I guess you’re going to carry that feeling forward a few decades, because in your adulthood you’ll bring it back for your community. I’m happy to say, little Emily, that after high school, after moving away to Europe, and after coming back to Canada, but just to live in the city, you and your partner will one day move back into that magical Phantom Rickshaw trailer, and raise your children there. And somehow the land, the lawn, the ferns and trees, and the community that held you, growing up, will embrace you, as if they say, “Welcome home, little Emily! We’ve been waiting for you!”
Your kids will make their own friends, and bring them home to play at the Phantom Rickshaw, oblivious to the home-milled siding and the sign above the door. You’ll grow food and flowers, and probably embarrass your children by having too much Dutch cheese in the house, and refusing to buy plastic cups. But the idea that the Phantom Rickshaw’s siding was hiding a shameful secret will evaporate when your partner replaces all those metal-clad walls, and the only thing remaining of the trailer will be the hitch poking out into the garden. Your kids will grow up proud of living in this place! And through their eyes, you’ll discover the importance of celebrating it. You’ll create the Rickshaw Masquerade.
Well… not only you. By this time, Mum and Pappa will be living in a new house just up the hill, and Adrian, no longer smaller than you, and generally seen as the life of every party, will have moved back to this community, too. And all of you will make a party that is so epic it will even once be written about in a magazine! It’s not a news-worthy rager, nor anything particularly unique. It’s probably the same kind of community gathering held in communities all over the world, sometimes connected to religious festivals; sometimes to births, deaths, or other community events. It’s the kind of party where everyone brings some food and just shares a piece of space and time, together, glad that we have the ability to do so. It’s just home.
The Rickshaw Masquerade is when we dress up for pure fun, but also to put on the colours of our best, most fabulous selves! Adrian and his friends usually build a spectacular bar, and I, middle-aged Emily, decorate the yard with banners, bells, flowers, and whatever else I can get my hands on. Mum still makes a big delicious punch, but much less sugary than that hands-washing punch at your grade-six party! Our gorgeously-dressed community arrives just before dinnertime, and we have a spiral dance on the lawn, and sing a song our family wrote for the occasion. The kids tend the bar and play badminton; the teens hide in the ferns thinking their parents cannot imagine the stealthy things they get up to. Their parents are doing these stealthy things by the fire. And we sit around the fire chatting and singing into the night.
In the morning we awake to the dry summer grass under our feet. Flowers, feathers and reusable cups are scattered around the yard, and in the blissful warm quiet, the rumble of Pappa’s tractor comes to lift up the bar and take it away for another year. And as we walk around tidying, our hearts are still singing:
Let the Sun keep burning, and the Earth keep turning; holding hands, we will dance, into the moonlight.
Let the green earth feed us and cool water relieve us, singing free, joyfully, into the moonlight.
We’ll sing it again, next year. Parties like this are what the world is made of. Love, Emily
Once, while downtown with my young children, I noticed a man walking by with a pin that said “invisible disability”.
“Gad, how awkward”, I thought. He’s obviously not that disabled, as he’s walking around, downtown. And as we carried on our way, I continued to wonder what on earth his supposed invisible disability was, and why he felt the need to declare it on his jacket. Could he have partial blindness, and the pin is supposed to warn people he may bump into them? Could he be deaf, and we should help him in case of audio-only emergencies like an air-raid siren? Maybe he just has cognitive decline or a mental health problem. Likely that. Yeah. A mental health problem that causes attention-seeking and makes him feel sorry for himself because he just can’t deal.
I found a clean-looking bench and sat my kids down to consume our sandwiches. Gluten-free bread in those days was a novelty, but necessary for my son, so our sandwiches were rather hard and crumbly. I’d made up for the tasteless bread with super-tasty salami and tomatoes. No mayonnaise because my son was also allergic to eggs. Maybe the pin-guy just had food allergies and felt sorry for himself, but why would he advertise it?
I was a young mother at the time, still flailing to just understand my own kid’s food allergies, and pretty entitled. I worked my butt off with parenting, teaching, and running community programs. I prided myself on working hard, and I couldn’t imagine anybody more tired than me; more in-pain from lifting children; more deserving of accommodations or understanding. I certainly couldn’t imagine that one day I’d have an invisible disability.
Now that my kids are grown and I live with a serious invisible disability, I still don’t want to advertise it. Because shame. That pin-wearing guy was much more courageous than I am. I mean to challenge my shame with this photo:
Here I am in my usual morning location, writing this article. This photo was taken by my partner and caregiver, Markus, because I asked him to. The weird black thing on my face is an acupressure clip for migraines. I tidied the nightstand for the photo. Now I’m out of breath from doing so.
In early 2020 I was a parent, a visual artist, a self-determined learning consultant, and a leader of art and wilderness programs. I also grew many of our family’s veggies, in a garden I loved. I spent a lot of time hiking, crawling and climbing around in the wilderness with kids. Then I, my daughter and most of her class that I’d been teaching, came down with a sickness that nobody could identify, because although our symptoms matched those of the then-new Covid-19, there wasn’t yet any test available to confirm it. After a week of fever, some blacking-out and a visit to urgent care, then a few weeks of ongoing respiratory symptoms, we recovered and went back to work and school.
By March, I was exhausted. My body hurt everywhere, and I developed a new, ongoing respiratory issue; I felt like I couldn’t get enough air, and was given asthma inhalers of two different types, that made the symptoms much worse. I had a headache all day every day, but I told myself I can handle pain, and kept working. After a day of work I’d be wheezing and shaking in the evening; sometimes also with a fever. I cut back my work days to only two per week. Then one. Then one every two weeks. And by summer I was flat-out in bed, most of every day. I eventually learned that the name for one of my major symptoms is postural orthostatic tachycardia syndrome, or POTS. It’s basically a circulation and autonomic nervous system issue, and means that if I’m upright for too long, I get blurred vision, dizziness, nausea, and will eventually pass out. I spent the latter half of 2020 and all of 2021 mainly in bed.
I had Long Covid. I still do, but those first two years were the worst. I couldn’t get out of bed for more than about five or ten minutes at a time, maybe three times a day, without suffering intense shooting pain, wheezing, dizziness, blurred vision, and fever. My partner helped me to dress and undress. He washed me, and administered the many trial-medications and supplements I was offered. He worked gratefully from home and took frequent breaks to bring me food or tea, to keep up with errands, and sometimes to feed me or help me to the toilet. On the occasions I did leave the house, my son would walk behind me and push gently up on my back to help me walk. My daughter, also suffering from Long Covid, but less severely, would curl up beside me in bed, where we spent endless hours just keeping each other company. My kids took over most of the cooking, garden and chicken duties. I find it difficult to talk about the extent of my physical disability in those years, partly because my symptoms were dismissed and mocked by so many physicians, at the time, but also probably because I carried around a huge ableist attitude. And because my disability was invisible.
The most obvious invisibility was that I was in bed. No longer able to attend community functions or even just go to the store and bump into neighbours, I was no longer part of my community. This experience forced me to realize something I’d never believed, before: Most people don’t really miss you, when you’re gone.
But as the years went by, and more and more was learned about Long Covid, my health did improve. I benefited greatly from the BC Women’s Hospital’s Complex Chronic Diseases Program, and a series of interventions that slowly brought me to the point where I am, today: I can spend hours of every day out of bed, mainly in the afternoon, and therefore can go out in public once in a while. Despite POTS, arthritis and other inflammatory pain, I can do at least a couple of “big activities” each month, such as watching a show, attending a family gathering, or grocery shopping. Sometimes one per week, if I rest thoroughly for the week in-between, to recover from the resulting fever, viral flare-ups, nerve, organ and joint inflammation. If I don’t rest, or if I am unfortunate enough to pick up “a slight cold”, as it’s known to others, I can end up with months of shaking, untreatable fever, passing out from lack of oxygen and/or pain, pneumonia, bronchial, sinus, and urinary infections, or pleurisy. I’m now allergic to at least one antibiotic, because of this, and have cataracts from prednisone. So I’m very, very careful about masking in public, sticking to my treatment regimens, and how much I go out. I’m not as careful as I should be around staying home, because it’s lonely, here!
This, too, is a kind of invisibility. When I’m out in public, people see me and tell me I look so healthy! I say “yes! I’m doing really well!” and then return to my house, where I curl up on the couch, my partner wraps me in a blanket, and I wait for the fever to subside.
Once in a while I mention my reality to people. In a sentence or so I try to describe my symptoms—an effort, I guess, to break the invisibility shield; create some kind of connection. And while some people are curious; compassionate, even, many sort of drift away, or roll their eyes. Sometimes, out of love or concern, they offer advice: I’m suffering because I got vaccinated, or otherwise because I am an anti-vaxxer. I should try going paleo, or vegan, or eating only meat, or mainly blueberries. More reasonably, I should see a therapist, or a doctor, or maybe get some exercise. I get it. I really do. I have the same propensity for offering unsolicited advice, myself, and know it comes from a good place. All they can see of me is that I’ve put on weight and am not out working in the community. They care about me, but my experience is largely invisible. They don’t know that I’ve already seen over a dozen specialists, tried even more interventions, and that as much as it physically pains me to put on weight from lack of exercise, exercise itself makes me put on weight by causing inflammation and more hours lying in bed.
I am SO aware that this sounds like a pity party. If you’re still reading, I commend your patience and tolerance. I’m still here because, as I healed, I discovered there are in fact millions of (by one estimate 400 million) people living with Long Covid, and fighting for others’ visibility is worth confronting my own shame. In 2024 I created a wearable art piece and performance called (dis)robe: Hospital Gown, that included the faces and common symptoms of over three hundred Long Covid patients. The intent was to advocate and create visibility for this massive group of people, but I also learned a lot, in the process.
I learned that most of us are women. I learned that while some had pre-existing health issues, many were very active, healthy people. Long Covid doesn’t seem to discriminate, and may not, in fact, be a result of laziness or incompetence. The list of symptoms is very long, but many are common to most of us. All of us have been discriminated against, either for mask-wearing, sitting down to rest, using mobility aids, or for being anti-vaxxers (most of us aren’t). I’ve learned that very few have actually been helped. The number of people who were or are still dismissed by medical professionals is alarming. The number of medical professionals who still treat us with disdain is sickening.
A few days after my second Covid vaccine in 2021, my partner brought me in to the ER, as I was wheezing, blacking out from either lack of oxygen or the excruciating pain in my chest, shaking, squirming uncontrollably, and running a moderate fever. My partner pulled our car up to the doors of the ER, but I couldn’t get myself out. He ran inside and luckily found friends who were there with their elderly father, and they helped me in to the waiting room. The place was packed; there were no beds, and everyone was stressed. Because I couldn’t see, was wheezing loudly, and was in too much pain to speak clearly or state pertinent facts, my partner tried to describe the situation to the intake coordinator. She barked at him that I could speak for myself, and told me to stop hyperventilating and get my act together. My partner tried to steady me in the chairs as we waited beside an unused stretcher, until he couldn’t manage it anymore, and just put me on the stretcher, without anybody’s permission. The ER doctor came by every few hours, offering me opiates for the pain, which I’m allergic to, and every time I declined she rolled her eyes and left in exasperation. Eventually she told me to get a thermometer and go home. Nobody even looked at my lungs, and thankfully, I did eventually recover.
In 2025 I lost a friend to pneumonia. She was a mother, like me, to a teenaged child. She wasn’t formally diagnosed with Long Covid, because our system hasn’t yet managed to find, diagnose, or treat all those who are suffering. She thought she had Long Covid, and as someone who knew her well, and saw the similarities in our symptoms and the way she was dismissed by medical professionals, I don’t doubt she did. Her official cause of death was pneumonia, though. It will not be recorded as Long Covid, and nobody cares, even so. Well… I do. Juanita is one of the people for whom I’m writing this. She was extremely courageous. Lots of people, including me, were put off by how forward she was; how open and honest about her life’s challenges. People like to ask you how you’re doing, and hear back “great, thanks! How about you?” They don’t actually want to know. My father told me this when I was a teenager and I thought he was just obnoxious. Now I know he was right.
My father had Parkinson’s. It was, eventually, a very visible disability. Although unfortunately, before he used a walker, people sometimes just saw his wobbliness and assumed he was a drunk. When people asked him how he was doing, he often said, “better than I could be!” It was a way of seeing the positive in what was actually an extremely challenging, progressive disease. He also liked to say his cup was so full it was overflowing.
I guess I’m following my Dad’s lead on this. When people ask me how I’m doing, I might answer that my chicks are growing adorably, or I’m sure loving this weather, or maybe that I’m so happy my kids are living well in the city. Sometimes I take my Dad’s lead and say something that hopefully points at the ongoing challenge of my disability while sounding positive about it.
Disability.
That’s still hard to write. Even though I have a disability parking tag in my car. My car that mainly my partner drives, because driving taxes my system too much. I lie there with the passenger seat reclined and my feet up, heating my body with the seat heater, trying to conserve energy and circulation for whatever we’re driving to. I haven’t applied for all the disability benefits I am supposedly entitled to because the process is too much work, and (mainly) because I’m ashamed. Internalized ableism. Gad, how awkward.
I long for the life I once loved: leading adventures through the bush, running art programs and tromping out as an installation and performance artist, making change in the world, for the better. But I hold my adorable chicks; I make an excursion from my bed to the sunshine. And I remind myself that I have an invisible disability, and I’m better than I could be.
Mid 1980's. Behind the loose rehearsal set for our play, I was stuffing my winter socks into my mother's bra, transforming from my role as the sandwich-board-wearing, singing pig to the obnoxiously-vain queen. I was nervous about my fellow actors watching me put this giant bra on over my t-shirt, and remembered Julie's words from when we'd been swimming at the beach just last summer. She'd been changing into her swimsuit, under the veil of her shirt, and said, "I don't know why I'm shy; I have nothing to hide!"
Julie was my best friend's mother, the cooker of tofu dinners and the owner of fluttery, gentle hands that tucked me into bed on the hundreds of nights I slept in her home. She was the giver of twenty-five cents' allowance to any child who happened to wake up in her home on a Sunday morning, and the offerer of hugs, should any of us need them. When she offered me the role of the pig and the queen in her and Jack's new theatre program, Tir-na-nOg, I accepted because I loved her. I accepted because I knew I'd be safe with her. And I was.
And in the refrain of the play we performed, (yes, of course it's normal for a play to have a refrain!) we sang,
My leaves, they fall, like yellow tears My leaves, they fall, like yellow tears My bones, they are bared, to the bite of the wind I am fading away; I am fading away
…because, collectively, we young performers were a tree, and the wind, and whatever else we needed to be for the beautiful, heart-full, obscurely profound story we were telling to the handful of parents who came to watch us.
Close your eyes, follow me, come and see Close your eyes, follow me, come and see
The words of this song still permeate my dreams, now that I'm fifty. Now I'm fifty, Jack and Julie's little theatre school has nurtured two generations into adulthood, including my own children. They worked with a local developer to build a space for their dream, and have been operating out of this little space for decades, now. On the east side of the building is a wide open room full of props and costumes, some chairs, and the spirit of so many imaginative group adventures that have echoed off its walls, over the years. It's the space where Jack gathers children's ideas around a story and helps knit them all into an adventuresome script. It's where Julie flits through the developing story, reflecting and celebrating each child's contributions with a kind of joy that infuses the whole room with glittery delight. On the west side of the building, Jack has built a spectacular theatre. It's small, but supremely functional, and his beautiful curved walls, trap doors and secret passageways have inspired much creativity for the children who use them. The set is empowering to children, because it gives them a way to work with their resources and surprise people with ingenuity. Julie paints the set; the backdrops. Julie brings the ephemeral magic to the space. This building, and the nurturing of our children's dreams within it, are a foundation of our community, you might say.
Tir-na-nOg production of the NeverEnding Story, 2013.
Tir-na-nOg isn't just the Land of Perpetual Youth. It's the place where youth is a key to growth. A place where imagination, delight and authenticity play with each other in the spaces between children's faces. And adults'. Because now many children stay with Jack and Julie into adulthood. Some have gone on to very successful careers in the performing arts, but no matter where their life-paths have gone, all have had their lives enriched, their confidence bolstered, and their prospects widened by the lessons they learned at Tir-na-nOg.
My own first child was one of these. Taliesin knew Jack and Julie personally; had played with their grandson in their small apartment above the theatre school, and had gone to see their school's plays multiple times, as well. He wanted SO much to be a part of this magical world. But he was also one of the shyest children I'd ever known, so actually going in to the first day of theatre class proved to be impossible for him. We tried again every week, even taking homeopathic stagefright remedy, arriving before the other children, and more acclimatization visits… to no avail. After six weeks, Jack worried that Taliesin was missing too much of the year's program, and suggested maybe we should wait until the following year. But Tali was determined, and somehow just the sound of Jack's soft gentle voice gave him the confidence he needed, and… he just went in!
Taliesin's thank-you letter to Jack and Julie, after his first year at Tir-na-nOg.
That year Taliesin created a non-speaking role for himself, but then started taking on speaking parts, and eventually leading roles with many many lines, that he diligently practised, while also making himself costumes, often with friends who were also in the program. Taliesin went on to create YouTube videos about science topics he was interested in, as well as animations and comedy. He acted in various school plays, but his dream career is not theatre. That doesn't mean the gifts he got from Tir-na-nOg aren't still serving him.
In adulthood, Taliesin became a digital artist, building upon the creativity and confidence nurtured at Tir-na-nOg. And he also ended up working part-time for the H.R. MacMillan Space Centre, while he lived in Vancouver. He became that quintessential inspired science-show-guy, excitedly demonstrating rocket propulsion and other seeming miracles to a crowd of parents and kids! When I went to watch his show, I cried with joy. In the audience that day were a few children, and as he looked out into their eager and shy faces, I saw the same look in his eyes that I know from Jack. He saw them. I mean he really connected with those kids; took their questions at face value and, gently but enthusiastically, made his science show theirs. When he brought up a kid to help him demonstrate, that kid knew he was safe up there on the stage, which is a gift Tali got from Jack and Julie, and now passes on to younger children, as well.
So many of Tir-na-nOg's alumni are spreading Jack and Julie's gifts to the world. Some even still live on the island and are more directly still associated with the school.
Jack and Julie's gift may be spreading into the world, but the fate of the theatre school itself is now in jeopardy. Jack is undergoing treatment for aggressive prostate cancer, and Julie has been diagnosed with Alzheimer's. The fact that they managed to keep the school operating so long with their current troubles is a miracle, indeed, but now they need our help. Our community is fundraising to pay off their building loan, so that the dream of Tir-na-nOg can continue, without their constant personal involvement. Donations can be made at https://www.gofundme.com/f/support-jack-julie
And in our future, may we continue to see our children grow into their confidence. May we continue to see their dreams blossom, and Jack and Julie's gifts spill out into the bigger world. Maybe we continue to hum, as we walk along,
Close your eyes, follow me, come and see Close your eyes, follow me, come and see
After my dad died, in 2015, my Mum saw me grieving and told me to paint something beautiful. I didn't have it in me, and I painted a whole lot of anger and pain. Sometimes we just have to paint our truth. But… what we create becomes our truth, as well. My mother also told me–countless times throughout my life–that if I wanted to feel happy, I could just make myself smile. That's the last thing you want to hear when you need to be seen and heard; when your experience needs to be acknowledged. But it's also true. And it's been the way I manage the worst experiences life throws at me. I stretch my lips out sideways, rub my cheeks vigorously, and just grin. I fake a laugh until I feel how silly I am, and it becomes real. I paint the most beautiful things I know–the birds and trees and plants and wind and flowers–until their beauty fills up the void left by the pain.
When my mother was dying, I painted my car. I covered it with butterflies. "Why?!" People asked me. "Oh the resale value!!" But I did it because beauty. Because the local species of butterflies and moths I painted remind me of a happy day in my garden, and of the butterfly-effect, where small acts of beauty (like painting my car) might in turn create much larger beauty. I painted it because I don't want to live in a world where something as essential to my life as my vehicle is effectively just a gamble against the future, waiting to be re-sold. And I painted it because my mother was dying, and I needed something joyful to do, in between the doom and pain that pervaded our days.
It's not that the pain is really gone, of course, just because we create some beauty. We still need to deal with the horrors of life, and to heal the pain, itself. But at the same time, the world is carrying on around us, and we are contributing to how it grows, whether we're aware of it or not.
Decades of studies have shown us, by now, that the media we consume affects how we experience the world around us. What about what we create? What about how we create? I spent a few years creating social media videos about our local ecology and my nascent regenerative food farm. Making the videos forced me to consider the way I spoke about those things. Editing the videos made me think about how my words would come across to others. Publishing the videos exposed me not only to generally positive feedback from viewers, but also to other videos with similarly nature-celebrating themes that came up in my own feeds.
On the other hand, I've also landed in negative feedback loops, for example when posting my negative political views on our local forum. People fought me, I became angry and argued back, people stated all kinds of further negativity, and generally the conversations devolved, and community bonds broke. I'm not trying to imply that we shouldn't speak up for causes we think are important, but how we do it matters greatly.
What if, instead of calling out harmful things we notice (or in addition to calling them out, if they really need to be stopped imminently), we built the world we want, right alongside the world we don't want, and just lived in that world we want? Would others join us? I think so! Or maybe they'd all be building their own utopias, and one day there would simply be more of us living in joy than in fear and resentment. What if, instead of being ugly with our thoughts, we were beautiful?
It's not possible to be beautiful all the time. Sometimes we just have to curl up in a ball and let the sad times roll over us. But I feel like I come out of such times healthier when I've cultivated enough beauty inside of me that some of it is still there to blossom, when the tears dry up. Then there's more of me to go about building the world I want, by making all life's little choices in line with my vision for a beautiful world.
My mother's gone, now, so I have to summon the memory of her voice in my heart: Emily, make something beautiful. And I, like she, and like you, have to be that voice for ourselves and others. Go make something beautiful. Be beautiful. Find what brings you joy and cultivate it.
This is not AI. This is a photo of my hand drawing a portrait of three young men, with a reference photo open on my laptop, beside it. So it's a photo of a drawing of a photo! This photo was taken by an artist: me, Emily van Lidth de Jeude. I interviewed the young men and got them laughing together, to create a happy memory from which to draw their portrait. I photographed them during the interview. I then communicated with their family to determine how the final portrait would look. I then drew their portrait, and communicated more with their family to ensure the final product was what they hoped for. Then I sent the portrait to an art printer, who made a print of it, for their grandmother. Then I packaged up the portrait and delivered it. I spent dozens of hours creating this portrait, and the family evidently loves it. Why? Because it's real. It's their children. It shows a real moment of happiness and connection. It shows love. And it's not AI.
And now this image is an illustration for a blog post I'm writing, myself. Also not using AI. These thoughts are actually fully my own. These words are the way I think them, in my own mind, and share them with you.
This morning I received a blog post written by a person whose work I admire, illustrated by OpenAI. It's so depressing to see intelligent, thoughtful people write wonderful essays, and illustrate them with AI. Not just depressing because the result is so devoid of human connection, but also because the person who used the AI to illustrate is also becoming devoid of neurological connection. Yes–I'm serious. A 2025 study out of MIT showed that:
Brain connectivity systematically scaled down with the amount of external support: the Brain‑only group exhibited the strongest, widest‑ranging networks, Search Engine group showed intermediate engagement, and LLM assistance elicited the weakest overall coupling. In session 4, LLM-to-Brain participants showed weaker neural connectivity and under-engagement of alpha and beta networks; and the Brain-to-LLM participants demonstrated higher memory recall, and re‑engagement of widespread occipito-parietal and prefrontal nodes, likely supporting the visual processing, similar to the one frequently perceived in the Search Engine group.
(N. Kosmyna, E. Hauptmann, Y.T. Yuan, J. Situ, X-H. Liao, A.V. Beresnitzky, I. Braunstein, P. Maes, (2025). Your Brain on ChatGPT: Accumulation of Cognitive Debt when Using an AI Assistant for Essay Writing Task. (Preprint, Under Review.) p. 2.)https://arxiv.org/pdf/2506.08872
So, this study was focused on writing with AI. Still, it seems blazingly obvious to me that using AI to illustrate our work is going to deprive us of our own illustration abilities. And I'm not just talking about our ability to draw or photograph well. These are skills that can easily be learned, anyway. I'm talking about our ability to conceptualize. I'm talking about our ability to understand how others think: what kind of an illustration might pique their interest in our work, and how that illustration might reach them emotionally (which is essential for impact). It's really about human connection. And when we lose that, what do we have left?
Julianne Holt-Lunstad states that "scientific evidence has been credibly demonstrating a significant causal effect of lack of social connection on leading physical and mental health indicators, such as cardiovascular disease, stroke, depression and dementia." (J. Holt-Lunstad (2024). Social connection as a critical factor for mental and physical health: evidence, trends, challenges, and future implications. (World Psychiatric Association.)) https://pmc.ncbi.nlm.nih.gov/articles/PMC11403199/
OK, OK… Let's not get all dramatic. We're not busy thinking about our future health, right? We're not busy thinking about the future at all! All 55 participants in the study I quote up above were university students, and the study lasted only four months. That's four months for significant brain disconnection to occur. Where do you see yourself in four months? Personally, I hope my brain-health is still improving, not declining. And same for my social connection. So from a purely selfish perspective, I don't use AI.
I am trusting (but also researching to determine that my trust is well-placed) that by continuing to engage in my own work, I will have a part in making my life and my greater community better. I trust that in researching, I still depend on my own observations and fact-checking, to be sure the information I'm gathering is accurate. I trust that in sharing this information with you, I lead with my brain and heart, instead of being blindly led by an LLM whose interest was programmed by a corporation who doesn't give a crap where I'm at in four months. I trust that the image I created and used to illustrate this article will remind you that I'm human, and I trust that being human is still worth a lot. I trust in our shared connection to support us all in the future we're creating.
I performed one of my wearable art pieces at the Museum of Vancouver recently, and they pointedly payed me properly for my work, as well as provided human-created promotional material around the event. It shouldn't be amazing to simply be respected and paid for my work, but these days it definitely feels amazing. And simply wonderful to be working with a team of actual humans on making this performance happen. Collaboration is part of being human.
Kudos to all the people out there still creating; still respecting other humans' work; still seeing our world as a community of creative, resourceful minds, instead of workers on a treadmill run by AI.
Grandma Frees the Ptarmigan, oil and graphite by Emily van Lidth de Jeude
The audio version of this story is available on my MakerTube.
Dear Little Emily,
You’re sitting on the floor of Mum and Pappa’s house, by the big brown bookshelf and the wide darker-brown row of Encyclopedia Britannicas. You have one open on your lap—number twenty-two—its huge brown covers rested against your bare knees, and you’re running your finger down the one of the many shiny, thin-paper pages of the PSYCHOLOGY section. Jeez there are a lot of things to say about psychology. But nowhere, not anywhere at all, do you see the word ‘psychosomatic’ popping up. Finally, after picking through hundreds of words you can’t bother to try out, you land upon this: PSYCHOPHYSICS, "a department of psychology which deals with the physiological aspects of mental phenomena." Mental. Grandma is a mental case, that’s for sure.
And amazingly, like the heavy book is calling her right out of crazy-land, the next listing in the book is PTARMIGAN. "A gallinaceous bird akin to the grouse." Whatever that means. It says it’s Gaelic, which is impossible, because you know ptarmigans are Canadian or Ukrainian. Grandpa is Irish and he never mentioned a ptarmigan. Grandma says ptarmigans live in Ukraine and in the Rockies, so. There they are.
But what the hell. Psychosomatic. It’s not even in the encyclopedia, right? Like even the definition of Grandma’s craziness is not in the book, that’s how imaginary it is. And the encyclopedia, now you’re nearly twelve, and it’s nineteen-eighty-seven, is the biggest, most trustworthy source of information in existence. As far as you know, little me, and you know more than some eleven-year-olds, but not nearly as much as you think you do.
You’re thinking about the last time you visited Grandma. Daddy dropped you off there for a sleepover, which seemed like a wonderful escape from the terrifying basement corner that you have to sleep in, at his house. But soon you realized there are other kinds of bad.
You sat in the wooden nook while Grandma smoothed her long, pearlescent nails. They’re three times as thick as your nails, because she’s old (though not as old as most Grandmothers, Mum says), and her nails are all covered with ridges, which she fills with layer upon layer of nail polish. You heard the plastic scrape of her nails; the rattle of her bracelets, and you shifted your gaze to the pink and turquoise squares of the kitchen floor. She was still talking, and you were getting tired. “The Devil lives in her,” she went on. “He lives in her mind and when she dies he’ll take her away to his lands.”
This wasn’t the first time Grandma professed to understand the Devil’s behaviour, and it usually somehow involved Mum. Mum says it doesn’t matter because we don’t believe in the Devil, so you sat quietly just waiting for Grandma to finish. “People who leave their husbands are evil,” she continued. “Your mother has the Devil in her heart, and you were born from that woman’s evilness. You have to pray to God to take it out of you.”
“I don’t believe in God,” you said, then, looking bravely up into Grandma’s wrinkly face; her nose kind of lumpy, in a way that made you think that must be the Ukrainian coming through. The angry concern in her sinister eyes leaked out the wrinkles of her face and into the perfect curls of her permanent-set hair. She looked like she might bite you, but you were too tired to care. It would be hours before Daddy would be there to pick you up, and by this point you thought you might fall asleep right there on the table, next to Grandma’s hands, her plastic bracelets rattling beside your head.
“Your mother taught you to say that. She put the Devil in you.”
“I’m so tired, Grandma,” you pleaded.
She looked up then, again, from her nails, and appeared surprised. “Oh, yes, dear. Would you like some Sprite?”
“Can I lie down on your bed for a minute?”
“Of course, doll-babe,” she replied. “I have to go call in the sun.”
You walked down the short hallway to Grandma’s bedroom as she slowly descended the brass-rattle staircase to the basement door, where the sun had begun to peek through, from the cedar trees, outside. “Come on, Sun!” She exclaimed. And, “oh hello, how’s your morning?” She asked of some random bird flying through her yard. And you lay there on her perfectly pink bed thinking about the mystery of fibromyalgia that caused Grandma to stand in the doorway and soak up the sun, every time it shone; that caused her, also, to keep her house a few degrees above normal, because supposedly it helped her pain. Grandma says she has fibromyalgia. Mum, Daddy, and everybody else say she has psychosomatic illness. It’s all in her head. And the Encyclopedia Britannica, for all its wisdom, has declined to comment.
You woke up with Daddy’s hand on your back. Somehow in your thoughts you’d slept two whole hours away, and it was time to go home.
Home is a place of reason; a big tree-speckled yard full of food plants and flowering plants, some ponds, rabbits, chickens, a dog and a safe house to live in. No gods or devils, no ‘fairytales’, as Pappa calls them. You eat what you grow and you see how the actual world works. Everyone is upfront, or so they say. And illnesses are real—the kinds of things you can check with a thermometer and heal with cough syrup, chicken broth, and Earl Grey tea. Nobody has psychosomatic illness in this home. Nobody also calls in the sun, nor talks to birds.
Mum says it’s not really Grandma’s fault she’s crazy. She was born to parents who fled when Russia invaded, and that kind of family trauma can make people a little strange. Grandma says she remembers her own mother hiding up in the trees as her entire village was murdered. Grandma says this as if she herself was in those trees. Which is impossible, of course, since Grandma wasn’t born, yet. But she remembers. Daddy says Grandma is just wasting Grandpa’s money by keeping the house so warm. Pappa says it’s none of our business what she does with Grandpa’s money. You just wonder why Grandma doesn’t have her own money.
Times are going to change, little Emily. Here I am, writing you from twenty-twenty-five—a date you likely find it difficult to imagine. I found it difficult to imagine the year two-thousand only months before it arrived! But here we are. You’re grown. Me. We even had kids who’ve grown up, by now. Russia is beating the shit out of Ukraine, again, and Grandma didn’t die of war or fibromyalgia; she died of strokes, kind of, in the end. Mum died of a brain tumour, and so far as I can tell, the Devil didn’t take her, because I still hear her voice in my head, sometimes reassuring me, sometimes giving her opinions, and sometimes shrieking in alarm. Maybe it’s the Devil after all. Who knows. And I have fibromyalgia.
Yeah. You. You, when you’re grown up, little me, are going to have fibromyalgia, just like Grandma. And no family member is going to dare tell you it’s all in your head, because they’ll all watch you experience the pain and struggle that this stupid illness involves. In fact, one of the doctors who diagnoses you will mysteriously test a bunch of seemingly-random spots on your limbs for pain, and when they all hurt like bruises, she’ll explain that those pain spots are specific to fibromyalgia. She’ll then suggest self-treatment by using saunas, keeping your house warm, and perhaps also trying infrared therapy. Infrared light is contained in sunlight, little Em. The doctor will one day tell you to call in the sun. Well… metaphorically-speaking.
You’re not exactly going to start calling in the sun. But I do try to soak it in as much as my fair skin and hot flashes will allow. I sit out there on the porch, watching the yard of this place you grew up in and that I eventually raised our own children in. I see the garden where I still grow most of our food, and I watch Eamon, the raven who’s been living around here for a few years now, fly low over the sunflowers, and land under the walnut. “Good morning, Eamon!” I call. He doesn’t answer, but sometimes when I’m in the garden he calls, and I do answer. We play a game where I copy his calls, and he changes them. Or at least I think we play this game. Maybe it’s all in my head. Who cares.
Tripping a little over an unexpectedly-high tuft of moss on the log I was stepping over, I heard shouts from the children, up ahead, and looked up to walk smack into the dangling tips of a soft wet cedar bough. I brushed the water off my face as the shouts were joined by gasps of horror or awe, and then guttural, powerful noises, and a loud “YEAH!!” As a small arm jutted up above the ferns that still stood between me and the kids, holding a rather long piece of deer-spine, that then fell apart in mid air, dropping a piece of itself unceremoniously back to the forest floor. The kid holding it up looked a little disappointed, but continued smiling, as they and their classmates experienced what was, for some, the first sight of a nearly-complete deer skeleton.
Some of the kids gathered as many bones as they could carry; some fought for their perceived rights to the skull; the spine; those amazing paddle-like shoulder-blades that always seem to become useful tools in the hands of ten-year-olds accessing their powerful, primal nature. Some stood back looking alarmed, and one kid was wearing the pelvis as a hat. A wide-eyed girl ran up to me with a piece of the bottom jaw, pulling a tooth back and forth in its socket. “It comes out! Emily, the tooth comes out!” She exclaimed. “It comes out and it fits back in!” Was she amazed by the perfection of the way bones fit together, or by the access to an understanding of her own teeth; those things that had come out of her mouth with some celebration, and then grown there again, anew? Maybe she was just amazed at the tactile delight of it all.
Tidying up today for this weekend's open studio, I dusted around my bone collection, as usual. There were a few dead flies on them, as well as a few spiderwebs, and thankfully not too much dust, because dusting feathers—and especially that desiccated dragonfly—is a pain! Every time I pick up the rat skull, one of its massively long curled incisors tumbles out and I have to slide it back into that channel that grew to fit it perfectly, when the rat was alive.
Most visitors to the studio just come to buy a painting and don’t even seem to notice the bones, but I want them to look clean, anyway, because there’s something kind of yucky about dusty bones that’s improved by being cleaned. And anyway, sometimes people do notice them, and ask about them. I'm always a little nervous to divulge that I actually almost never draw or paint from these. Some people assume I do, and I guess I might think the same of another artist; imagining her like Georgia O'Keeffe, describing all the beauty of these things in charcoal and paint. But no. They mean so much more to me than just a subject to make a picture of.
When I clean the bones, I’m reminded of their differences and similarities. I have a rat skull from the compost (caught by our cats and delivered there to decompose, by me) and a beaver skull that my brother found down by the creek. Both have those amazingly long, curled incisors. You can imagine how, as the rat chews away at the wood of the chicken coop, or the beaver gnaws the trees down by the creek, they’d wear them away and need that long reserve to keep growing in. It also reminds me why it’s so important to give pet rodents something to chew. Compare that to the teeth in my deer skulls that look more like barnacles; not meant for cutting through wood at all, but just gnawing on their tough fodder of grasses and my roses, if the gate is left open. If they fall out they take a while to regrow. Unlike shark teeth. The little baby hammerhead jaw my daughter’s friend brought from Mexico is a reminder that a shark can’t go long without its teeth, so it keeps an entire collection of them behind each pointy front tooth, just waiting to move up into place, when space is made. I’ve known some children who had what we called “shark teeth”—baby teeth that never fell out but just stayed there in front of their growing adult teeth. They feel to me a bit like backup-teeth. Not like the canines on that otter skull. They have no backups, waiting. I imagine if otters break a canine they’d suffer for a while. Maybe that’s why they’re so vicious. They can’t afford to lose a fight. The teeth of these skulls have such stories to tell, as much in the ways they’re similar to each other and to me, as in how different they are. Different lives; different needs; different priorities. But still with the same basic bodily needs.
You’d think there’d be few similarities between all these toothed animals and the bird skulls I have, or the barnacles and bivalves. But I see the similarities there, too. The beak of the eagle is in many ways a bit like its talons; you know how easily it would puncture and tear the body of that little flat-beaked songbird, holding one half under a talon and hooking the other half with its beak. The songbird’s skull is so light I can blow it off my hand by accident while trying to get the dust off. It’s made to fly. And that’s how it escapes the eagle.
The barnacle, of course, looks like a molar. Of course we know barnacles are filter-feeders, reaching out their elegant and feathery feeding legs to catch floating foods under the waves, but then why are they shaped like teeth? If you’ve ever stepped on one in bare feet you’ll know why. It’s protection. Same with a shark, or an otter. One of the ways human children defend themselves is by biting. That’s what teeth are for, too! And the bivalves. Nothing about them can be considered tooth-like, it seems, until you remember that there are razor clams. You don’t want to step on those, either! And sometimes, on shells, I find the little curved bits at the edge and remember that that’s where the clam’s mouth comes out to feed, or sometimes its foot. Because clams walk through sand. And fast, too, as you know if you’ve ever tried to dig for one.
I look at all these bones and other body parts, and I feel connected to the world. I feel joyful that in our great diversity, we’re still all related; that our bodies have evolved to succeed in diversity and community. In this collection I also have lichens that remind me of our strength in living collectively with other species; I have conifer "berries" (not actually berries; I don't know what they are) that usually grow unnoticed in the tops of enormous trees, but which I collected off the ground. They remind me that there are beautiful processes we hardly notice for their being out of our usual sight, until a storm comes and knocks us all sideways, and we see things differently. I remember that all change is growth; even death. I remember that there is joy in just the smooth feeling of these bones; their lightness and their heaviness, the things I understand about them and the things that are mysterious to me. I remember the delight that I or others had in finding them, and I feel the sorrow that these lives ended, and the comfort of knowing our commonalities; the aliveness of just knowing we exist. I think of these things and I remember that everything is beautiful.
