The Little Threadbare Bag of Advices From the After Times

 

When people talk about severely traumatic events, they often refer to "The Before Times". I heard this during Covid, when we could look back at carefree parties and hugs with our grandparents. I felt this when my father died, and his half of my family crumbled, and I remembered all the beautiful times we'd spent together, not knowing they were our last. 

The Before Times are always somehow fanciful. All the negativity disappears and we pine for those Before Times like unrequited dreams. We long for and resent our lost innocence. Before I had Long Covid, I could just walk around on the streets and up the mountains and down into the valleys. In the After Times of Long Covid, I sat in my car and watched people walk by on the sidewalk, wondering how they did it. Walking seems miraculous, now. Those times when I could just call my Dad up to tell him about my day seem like magical memories. Those times when our children played together in the blissful company of grandparents who are now gone seem miraculous, now--now that we're in the After Times, where we are jaded and distrustful and fearful. We're in the After Times, where we are wiser. Supposedly. Wisdom, too, is not what we thought it was, when we were innocent.

I'm still waiting to feel wiser about my mother's death. I know I'm in the After Times, now, but I've just stepped over the threshold and I'm totally lost. People keep offering me pieces of wisdom, and every time I think, "Ah-ha! That's something that can help me on my journey!" And I stick the wisdom into my little threadbare bag of emotional tricks to pull out when it will inevitably be required on my Big Adventure Into the After Times. Like: "It's OK to cry; that means you're connecting with your mother," and "Mourning is a sickness. Like Long Covid. You've learned to integrate and adapt to that sickness; you can do it again." And every time these words feel like they came directly from the Deep Dark Mystical Universe of the After Times, where people are wiser and all the ones who've lost their mothers were apparently waiting around to catch my fall, and pull me into their embrace. Thank you.

And those pieces of wisdom hang out of my little threadbare bag of tricks; their invisible heavy tendrils dragging on the ground as I wander along. This is my bag, now. It was my mother's very fancy purse when I was small. She kept her handkerchief in it, and a thin Lancôme lipstick, and a smaller, matching purse for money. It carries the Memories That Kept Little Me Safe, when it was hers, and not mine, and I didn't understand this little bag. Now it's mine, in the After Times, and I'm filling it with the Advices of the Wise Ones.

One of the things I couldn't have known in the Before Times is the value of tears. I remember my mother's tears hitting this bag, inconceivably, as she reached in to get her lipstick, because they sometimes fell when nothing seemed to be the matter at all. And I remember them hitting this little bag; how it darkened with the damp, and how my mother swore at her own tears. Now I see the tears in the eyes of these Wise Ones; the weight and vulnerability and frankness of being The Ones Who Held Everything Together in the Before Times, but then the tether broke. 

Now we're floating. Lost. Nothing is together and we are free like we never wanted to be. We have tears falling when nothing seemed to be the matter at all, but their dampness leaves stains that are inconceivable to those who haven't yet arrived in the After Times. Now I'm one of these Wise Ones and these tears are my welcome mat. And my wisdom-offerers are crying, because even after all the years of living in the After Times, the sorrow is not less. It's just integrated. And it's good to know someone understands. Accepts my tears. Our mothers are gone.

The sorrow doesn't get less. It just gets integrated. That was one of the mystical advices offered to me in the Before Times, but I didn't understand it. I just added it my little threadbare bag of advices, where it sat unused on my mother's shelf, in the times when I didn't know what that bag was for; nor how to use it or what it meant, or even how it was possible at all. People gave me this advice and I couldn't see it, because I was in the Before Times. We can't fathom what we have never seen. So my bag sat on a shelf in my mother's house, quietly, being hers.

But now I'm here in the After Times. My beautiful Mama was wiped off the earth so that everything that was so real and tangible before feels now like a cruel slap in the face; a memory of wonder and longing: her arms around me; her little red purse and strange assortment of French lipsticks; her mystical explanation that soon it will be my turn to understand; her tears telling me goodbye; her voice and her song and her love. Now I'm the wise one because I live in the After Times, with my sisters and my aunties and even my dead mother. Now I'm the wise one because I have the experience none of us ever wanted to have. 

Now I meet the people whose mothers are aging; dying maybe slowly or imminently or in some far-off unknown and terrifying future, and suddenly they look to me like I'm a keeper of this horrible wisdom. But I look away from their searching gaze and into my Little Threadbare Bag of Advices From the Wise Ones of the After Times, and I wonder if I'm supposed to dispense these now, or wait. The answer is wait. These people who have not yet lost their mothers are still living in that blissful and mystical Before Time, and none of the Advices will help them because they don't yet know the horror. 

This Bag of After Times Advices is like a set of unlabelled keys to a house of horrors. You can't know which keys fit which doors because you can't yet see the doors. We can't fathom what we've never seen. 

Don't think you need to be prepared. You can't look over the threshold. You will have to reach the After Times, eventually. But not now. 

Right now, you still live in the Before Times. Do that, instead. Live those Before Times like they are your last. Because they are; all of them are. Live them with your children and your parents and your friends and the lost ones and the found ones. Because one day you will look back and say "Why did I waste those Before Times not knowing how magical and mystically beautiful they were?!" And you'll put that too into your own Little Bag of After Times Advices, and you will look at those who haven't crossed over yet, and understand that nobody can give advice to the uninitiated, because we can't fathom what we've never seen. 

Anyway, it doesn't matter how much you treasure your Before Times, it will never be enough. The more you love, the more you lose, but the losing is a kind of sublime sorrow that means you loved. So love. Just love.

I went out to see the auroras last night, and I cried. And it was beautiful, and I cried. I had to force myself to leave the house, because my grief feels like a prison, sometimes, but I went anyway. It was the first time ever I saw the aurora dance, and I was heartbroken not to be sharing it with my mother, so I told myself she was everywhere. In the auroras. That's one of the Advices From My Little Bag. Then I met another person on this horrible beautiful threshold of the After Times, and I did not open my Little Bag of Advices. We just cried. And in the dancing lights, I saw her tears.

Livestream artist talk July 31

Gratitude to Magda Davitt (Sinéad O'Connor) for her beautiful song Love Is Ours, which I listened to on repeat while painting this. This is my self portrait, at one, four, eleven and sixteen years old. This is me growing through and out of my childhood, as we all must, with all the traumas and adaptations that make us who we are. And with love for those who carried me through and still do. Love is ours.

This 8-panel painting is currently on display at the Silk Purse Gallery in West Vancouver during the Harmony Arts Festival.

 

I'll be doing a YouTube livestream talk with the curator and other fabulous artists this evening, July 31, from 7-8pm.

YouTube livestream:

https://youtube.com/live/SqwFKAcZ3sg?feature=share

Songs of the Apocalypse

"Three Craws", oil and graphite on 3 stretched canvases. Emily van Lidth de Jeude

Songs of the Apocalypse is a series I’ve been working on since around the time my birth father died. He had lived a long time with Parkinson’s, but the circumstances of his death in hospital, while recovering from spinal surgery, are a complete mystery, and in that post-shock landscape of fear, confusion, and a resurgence of shallow-buried family traumas, his side of my family fell apart. So this series of paintings began as a way for me to deal with my emotions of that time. But of course those personal issues are deeply intertwined with the societal issues we all live with: helplessness in the face of climate change, capitalist, colonialist and patriarchal damage, global societal upheaval, and the fallout from those things. For example, many of my own childhood experiences are a direct result of my grandparents’ war traumas. Two of my grandparents come from families fleeing war and famine in Ukraine and Ireland. Others recently lived here through the great depression, and all of these unknowingly stored those experiences in the many generations to come. So those bigger-picture problems filtered down through the generations to effect even my own children’s health and genetic makeup, a hundred years later. Divorce, childhood trauma, and family strife are just microcosms of the bigger picture. So in dealing with individual portraits I’m also looking at our society as a whole. In looking at the wounds and the healing, I’m hoping to create psychological pathways for us all to heal from the greatest struggles we face.

My parents did everything they could to support me, given the understanding and tools of our time. They created a safe and nurtured life for me on a small island, and they continue to support me in my adulthood. But life cannot be perfect. Life is not about good and bad, but about all people constantly growing. And growing looks very messy.

"(I open my mouth and) nothing comes out", oil and graphite on stretched canvas. Emily van Lidth de Jeude

 

The circumstances of my childhood were not what we consider to be ideal, but they’re also not at all uncommon. Like many of us, I live with intergenerational traumas from histories of war, colonialism, famine, and domestic abuse. These things are rarely spoken about, as our culture tends to look down upon expressing too much emotion or speaking about emotionally challenging topics. But the effects of my buried experiences are borne in my body as autoimmune diseases, and they’re in my paintings. The image above is one of the first I painted in the Songs of the Apocalypse series. It’s a depiction of my own face as it appears to me in dreams, screaming for all I’m worth to help the people I love (who are always suffering horrible fates in my dreams)... but no sound is coming out. And nobody hears me. As an artist I’m trying to break that helpless invisibility, not just for me but for all of us.

I am a woman in a world where one in three women has been the victim of physical or sexual violence, usually by a partner or close family member. So think of three women you know. Which one is it? Think of twelve women you know. How many of the four has told you their stories? I am a woman in a world where women are not only not expected to achieve, but are taught not to expect ourselves to achieve. A world where we’re expected to be happy to just survive. 

"Will You Love My Heart", oil and graphite on 8 stretched canvases. Emily van Lidth de Jeude

I don’t call myself a survivor because I want to do more than survive. This is a portrait of me at one, four, eleven and sixteen. It’s called Will You Love my Heart, and is painted to Sinéad O’Connor’s song, Love is Ours. It’s on exhibit July 24-August 18 at the Silk Purse Gallery in West Vancouver. As a synaesthete, I usually paint music, but not just any music. The song that inspires a painting will have a very specific meaning associated with my own memory, so what I’m painting is my visual experience of that song combined with my own memory and emotion. Love is Ours is about holding onto the pieces of our broken hearts and keeping each other alive. In our boxes of personal experience we grow out into the rest of the world, and then will we be loved? Or shoved back down into our private little trauma boxes? I’ve spent my whole life since my teens trying to get out of that box, to find love and healing, and grow into the many links between my heart and yours (yes you—we’re all connected). 

I figure it’s a good idea to let my voice come out now, share my progress and hopefully inspire billions of others to do the same. That’s why I’m finally beginning to show the Songs of the Apocalypse series.

So think of those women again. Those 12 women, four of whom have been assaulted. Maybe you’re one of them. Maybe your child is, or your partner or your mother or your dearest friend. What can you do in this moment to raise her up out of the box built of her trauma? What can you do to break the walls of the box? How can you change even one thing about the space you give her; the voice you give her; the respect you give her, that could help her find her own way out of the box? And how does your love make her strong?

I’m a feminist artist with a loving, evolving male partner and a strong, courageous daughter, and an extremely emotionally-aware son. Being the strongest I can be strengthens the foundations for everyone, including all genders, ages and classes of people. It even will combat climate change, colonialism, the patriarchy, and capitalism, because as I become stronger I can lean less on the cultural norms that hold up those false shelters. Creating a world where I can come out of my box and thrive means creating a world where everyone can thrive. Equality doesn’t mean bringing anybody down. It means using the pathways created by love to hold each other up. 

"Chain Dress", acrylic and stains on an altered child's dress. Emily van Lidth de Jeude

That’s what the Chain Dress is about. This is a portrait of my tiny daughter singing to her “baby”. Yes she’s encircled by a chain. But is it a chain of entrapment or connection? Is she the wearer of the dress or is she part of the dress? And who did she learn that song from? How did she learn to give all the love of her heart to the little plastic baby in her lap? This dress is a depiction of hope, for me. It’s about how we, as parents, choose to both break the chains of our generational traumas and build chains of connections, by loving our children. We choose to see them not for their mistakes or even the way they handle challenges, but for all they can be; all they want to be. We choose to become our best selves to model how we hope they’ll grow bravely into our problematic world. We grow bravely ourselves, because that’s the best modelling we can do. My parents are still growing, and so am I. So are my children. Those are the pathways of love.

Listening for Birds: Cancer Is Not a Journey

“Go and Make Yourself Content, My Love” (detail).
Swainson's thrush in my mother’s garden, to the tune of the Unquiet Grave.
Painted with acrylic, graphite and coloured pencil, by Emily van Lidth de Jeude.

I was walking down from my parents' house to mine, over the crest of their driveway where the wind blows steady. Not like the rest of the property, through which it tumbles this way and that, scatters just a few leaves, or bursts out of a single storming fern. Over the crest of the hill at the top of my parents' driveway, the wind passes smoothly and calmly, sometimes crisp and smelling of leaves, sometimes damp with the weight of snow and sometimes full of the heaviness of summer and dragonfly wings. I've walked here alone and with my children after Christmas dinner, my heart and belly and arms full of treasures. I've walked here holding my chest against hidden sobs when I couldn't be what the world wanted of me. I've walked on my parents' driveway even when they lived in a different house and I visited rarely, and always it has been a place of the wind and the gathering and freeing of perception and feelings. A place of reckoning or accepting. Not that night.

I was walking down from my parents' house on the evening we came home from our first trip to the Cancer Clinic, two weeks after the sudden and unexpected removal of a stage-four tumour from my mother's brain. I was walking down that driveway and there was no wind. The driveway felt flat, although it's not, and it's rocky, but the rocks were dead that evening, which they never are. The April grasses and blossoming trees were bereft of colour. Impossibly grey. There was no birdsong, no frogsong, not even the sound of leaves, and when I looked at the hillside I thought it might just go away, if my mother died. When my mother dies. She keeps reminding me: "We all have to die, sometime." But I don't want those words. That was one of the many logical thoughts that evaporated when the doctor told us we won't be returning from this trip. And we stared blankly into the empty air and our tears were silent.

I find the word "journey" as people use it for cancer absurd. We use it like we can pack for a trip and just take in the ride. But it's not that kind of ride.

Glioblastoma. Someone should make a horror carnival ride called Glioblastoma. You get in a little comfy bucket seat and it chucks you out into the sea. Then down a vortex you go, into a drain where you almost drown but NO! You're not allowed to drown! There are things to live for and places to see and you might have a few days or weeks or months or years of good life, so LIVE!!! And you can't feel your right side, and you can't find all the words that were here just yesterday, but now more than ever, you want to, need to LIVE!! So you come out of the vortex on the chemo train, where you get whipped back and forth over trestle and track without warning or reason through whacking slaps of sheer terror and poofy clouds of deep love and acceptance: A bird? NO! Slash! You're going to die! Slash! Maybe not so fast--Slash! Everybody is trying to help you--Slash! You're so strong--Slash!--Take some more pills--Slash! Love, love love--Slash! 

Love can't save you and everybody's talking to you like a child--Slash! Now you're the wise one--Slash! Let's finish your sentences for you--Slash! We could get an ice-cream!

Slash! You get to meet the guy who will administer your death--Slash--but only when you want him to--Slash--Be GRATEful!!

Slash!

Nobody wants you to die!--Slash--Let's go shopping!--Slash

Why are you so tired?           Slash.

Slash. 

You fall out from the carnival ride one sunny morning, and you smile up at the sky and look for birds. 

But there aren't any. 

My mother loves birds. My whole life has been decorated with her hushed exclamations of "oh! A warbler!" and "Did you hear the snow geese go by this evening?" My mother hears things many of us don't notice, like the pips of babies and the tone of ducks that tells her whether they're coming or going. When my father gently delivered a helpless baby owl into my childhood, my mother raised it on chopped liver and caught mice until it grew up and flew to the trees. But she heard its voice separate from the other owls, and she answered it, and taught us to make the hungry-teenage-owl call, too: Psssshhht! Pssssssshhhhhhhttt! That owl and its offspring came back to visit us for decades.

Terminal cancer is a strange thing. We want a timeline. Something to hang a hat on. To work with. To put in the calendar, and at the same time we want to live in the moment and not have to plan for death or even how to visit with all the loved ones. But just to sit and hear the birds. Except the chaos of medical interventions, social supports and emotional upheaval means not a minute exists of just. Peace. 

Until one day, we can't take the chaos anymore. Out of necessity we ignore the forms we're supposed to be filling out and decline the offers of new prescriptions, new dosages, delivered meals and all the services we know are needed. One day we just need to be.

This week I saw my father's eyes in a rare moment of stillness. They used to shine with his intensity; they used to sparkle and shoot beams of aliveness. But recently they've looked tired, and there were big wide tears balanced on his lower lids and he was just making a sandwich. I don't hear so much as I see, and I am starting to see again. I saw my brother's cheeks, this week, taut with small lines of agony as he pulled me into his arms and didn't let go. As he asked if he can take our mother to have her broken arm looked at. Cancer is not a journey. It's a horrible carnival ride, and sometimes we catch glimpses of the world, as we spin. Sometimes, also, we catch glimpses of the beauty that brought us here to begin with; that holds us up through the fear and the changes we didn't see coming. My parents walked out, hand in hand, today, to look at the blossoming of the world they share.

And I began to hear the birdsong, this evening. The teen-aged ravens are pillaging the robins' nests, to a great outcry, as you can imagine. We thought the black-headed grosbeak that my mother says only comes for a short time every spring had left, but it's been singing again. The wrens and towhees are hopping in the bushes, until they flit out to the pine, to make their plans. The offspring of our owl are impressing people along the trails, these days. And for some reason the flickers keep sitting around on the ground. My father says get the aphids out of my apple tree, but I can't reach them and we both know that's OK. Bats are out, tonight, delighting my peripheral vision. And as I walk up over the crest of my parents' driveway this evening, I hear the nighthawks dropping on their prey, all around me. The wind is warm, and it's summer now, and my parents are just watching a movie with a couple of mosquitoes like it's a normal evening. Just living this incredible life in an incredible world, and learning to step off the carnival ride and hear the birdsong.

How We Become

back cover illustration from Emily and Arthur, 1975

This morning I got up as I have almost every May morning for as long as I can remember, and went barefoot out of the house to wash my face in the dew and pick flowers for my mother. I don't know why I do it, and I don't know that my mother even knows I get that dew all over my face and feel so at peace in the world this way. Something inside me just feels this is right, so I do. I used to take my own children out to do it when they were little, but I don't think the practice has stuck with them in adulthood. Why do I do this? What makes it so important to my identity?

I came back home after visiting my mother to find this old book on my table. Emily and Arthur, by Domitille de Préssensé. It was there because my daughter and I were recently going through the children's books, reminiscing, and I'd pulled out a few of my old favourites. 

In these old books from the 70's, I saw how I became me, and some of how my children became, as well. The girl in the image above is Emily. She's wearing red--always--and holding her beloved hedgehog Arthur among the flowers. She has interesting things in her house like a "long stocking" that I always thought must have been a wonderful thing to have. And because my name is Emily, I grew up thinking this little red-clothed Emily represented me. Is she the reason I love to wear red? Maybe! Red just feels like it belongs with me! I remember feeling a lot like the way this Emily looks, as a child. I remember the feeling I had one May morning when I went out to find my mother some flowers and got distracted looking at woodbugs on the log where I eventually broke off a beautiful Turkey Tail fungus to bring in for her. I remember when I handed her that beautiful Turkey Tail with a couple of flowers how it couldn't encapsulate all the beauty of the woodbugs on the log, or the special curve of the broken wood, or the smell of the bark or the happiness of my heart. But I hoped she knew it meant I loved her. I became that girl on the back of the book--the one who is delighted by small found things--and am now a mother and artist who is also just still Emily. Still wearing red and going into the flowers to be me. How many Emilys have been somehow defined by this book?

As a parent, and former educator, and as an artist I know how much our childhood experiences mean to our identities. I sat wondering this morning how the idea of washing my face in the dew came about. I feel like I've been doing it all my life, but I can't ever remember doing it with my mother. Then I saw another of the treasured childhood books, and I remembered: The fairies drink the dew! When I turned four, my father gave me a book called In Fairyland, Pictures from the Elf-World, by Richard Doyle. In this book the fairies dance and fly and race snails... and drink the dew! I remember trying to drink the dew off the plants as a child, imagining I was one of the fairies. I guess somehow this became part of my personal May Day celebration. This is how traditions are born, how they grow and change and define us. And... this is the power of art!

page 13 of Richard Doyle's "In Fairyland, Pictures from the Elf-World", 1870

I always knew these and other images were drawings made by artists. Even the text of Emily and Arthur is a hand-drawn piece of art. Now I can see its influence in my own birthday-card making, and I can see how Eric Carle's rainbow of fruits for the Hungry Caterpillar informed the way I set up any painting, now. Nothing is complete for me without a whole rainbow.

So what have I given my children through the books I chose for them? Some I'm not so proud of, I confess, and some I can see in their life-choices, now. Obviously they were also more drawn to the books that suited their personalities--this isn't a one-way system of influence. And I chose things that suited them. We know that every move we make as parents will have effects on our children's psyches, that every mistake we make will cost them in self-doubt and therapy dollars, one day, and we hope they'll carry our triumphs forward as courage and happiness into their adulthoods. Our children become themselves in the environment they're given. 

But our sphere of influence doesn't end with our children. It grows from each of us into the world around us, whether we're artists or teachers or foresters, diplomats or farmers. We're all creating and influencing each other every day. The choices we make in the language we use, in every bit of media we consume, and in the products we bring into our lives all influence everyone we come into contact with. And through our contact we become ourselves, in community. Living with this in mind is self-determination. This is how we become, as a species, or perhaps even as a planetary ecology. It's good to remember that in everything we do, we have a choice.

Art for Change: When Connection and Conversation Are the Outcome

"(dis)robe Gaia Gown", worn by the artist, in conversation with a fellow Covid long-hauler.

I could see him drifting across the polished concrete floor of the convention centre, blue-jacketed arms spread into a perfect reflection of the very wide smile that punctuated his neatly-trimmed ebony beard. He was studying the very sad-looking portrait of my recently-divorced brother that adorns the train of the gown I had on display. He circled the gown slowly, hands splayed as if to catch every bit of story it offered, taking it in with sparkling eyes and smiling, smiling, until he looked into mine, and said, "did you make this?"

"Yes," I answered. "It's called '(dis)robe: Nursing Gown'. Tell me about your big smile!" And he told me he felt seen. We talked for a long while about how crippling our societal expectations can be for people of all genders. We talked about how trapped the painted man looked, even though he held the mannequin by a dog-collared lead. We talked about how the patriarchy crushes all but the wealthiest people--it was never about men versus women; it's just a few billion pawns fighting for survival under the shoe of someone much more powerful. And what if we were to work together, instead?

I just finished a four-day stint of exhibiting some of my wearable art pieces at the Art Vancouver fair. This gave me opportunity to reflect quite a bit on why I do what I do. My purpose as an artist hasn't changed, but it has deepened and I suppose I feel it more intensely, now. I'm here to connect people with each other, with their own authenticity, and with a more equitable, sustainable future. My art is a conversation-opener. Conversations like the one I had with this blue-jacketed man are the cornerstone of social change. They're the space where the change takes root in our hearts.

See those two people talking at the back of the image below? They're talking. Their hearts are making change. During this show I also spoke with many children who wondered what was "going on with the boobies" on that Nursing Gown, or whether they could touch the insects on the Gaia Gown, and I saw children pull their mothers around the skirt to identify the flowers they knew. People wondered where they might wear such unusual dresses, or why anybody would want to. "Definitely not to work!" One of them exclaimed.

The main piece of this winter's artistic journey for me was the Long Covid gown, '(dis)robe: Hospital Gown' (image at the top). It involved over 300 selfies contributed by Covid long-haulers from around the world, transferred to an altered donated hospital gown. From the back of the gown, trailing from a drawing of my son's hands (because when my Long Covid was at its worst, he used to help me walk by gently pushing my back), was a hospital-blanket train covered in some of the most common symptoms of Long Covid. These are the symptoms that millions of people worldwide live with every day, often confined to home or bed, invisibly. So the train is supported by a wheelchair that is also partially hidden. There's symbolism in everything I do, and this was my opportunity to give a voice to the millions of people who, like me, live mostly invisibly with Long Covid.

And when I got too exhausted (shaky, blurred vision, heart palpitations) from wearing the gown and talking to people, I could just step back and sit in that wheelchair. A purpose-built wearable art piece! This is what comes of making art that truly deals with my own personal experience.

I invited many people from the Long Covid community to attend, so it was no surprise that this was a conversation piece for long-haulers, nurses and other health professionals. Some people even came to delight in finding their own faces on the gown! But it was also a chance for us all to be visible to others--many of whom had never realized Long Covid was happening in the world. Education is change-making.

This weekend was, for me, an opportunity to see other people becoming; changing, evolving, and questioning themselves. It was an opportunity to hug so very many lovely souls, and to express gratitude for their thoughts and opinions. There were people just visiting from afar, people who came to support artist friends, and people who were also showing work at the fair, or working to organize. There were people who came just to buy a pretty painting, but ended up chatting about climate change, gender politics, and the healthcare system. My own display confronted people with sometimes-difficult topics, and yet they bravely engaged. This reminded me that while we sometimes want to hide from challenges, humans are mostly courageous, and generous with our intentions.

I was not the only artist there trying to change the world through art. Humanity is a great kaleidoscopic spectrum of beautiful people, reaching across so many circumstantial divides to connect and thrive. We're like all the network of roots, mycelium, compost and microorganisms in the forest floor: a vibrant bubbling potion of hope, and a foundation for continued life. In following our own paths with so many tentative, compassionate feelers, we're finding our way.

Video of (dis)robe: Gaia Gown performance

(dis)robe: Hospital Gown

This wearable art project about Long Covid is finally finished and filmed (thanks to Taliesin River!) It's also available to see on Instagram if you like, in a different format: https://www.instagram.com/p/C5R9o3ZxVmP/

 

Thank you SO much to the hundreds of people who participated, who shared this journey and who have held my heart as I worked on this. It has been my huge honour to represent you all in this way; to create something that can speak for us.

 

(dis)robe: Hospital Gown will be performed and displayed at the Art Vancouver fair, April 11-14, 2024. 

(To see full-screen video, click "YouTube" when it begins playing, and watch on YouTube.)

Text of the poem from the video (Emily van Lidth de Jeude):

 

It's Not Over

                  from behind the windshield

           waiting for my blood-test
           I see you getting        back to normal
                  walking on the sidewalk like
                                              it’s easy
                                because Covid is over
    telling me
           don’t worry
                  it’s safe now
           just get some exercise
        you’ll feel better       stop masking
           because covid is over
              and you don’t see
    that behind my mask I’m masking
                         my disability

because now my normal is different than yours
           and the Covid is not over
              when I walk       the blood
                pools in my legs and my lungs constrict
                  and the pox come back       the shingles
                    and the screaming       lungs
                     hold fluid         exhaust me
                     and the world becomes blurry
              I can’t see
you anymore because my mind is blurrier than the windshield

but it’s not over when I get home       I will stop masking
     what I’m living with       collapse       shake
           never mind the bone-ache
        I will treat my fever and sleep
     for a week
and it won’t be over

but now, because a blood-test means hope
with a hand on my back he walks me to the lab
he took the day off work to drive me here
I long to work again     just walk       even
                                     to feel valuable
but I don’t tell him that
because his burden is already
              too much

in the morning he rolls me
presses pillows under me
and pulls underpants onto my feet
so I can reach them       he strokes my hair
and brings me food and asks
if I’m OK
                         and I say better
                          than yesterday
                                because
                     I’m afraid of his fear
              and it’s ironic consolation
          that I’m one of many millions
             that my small adventure
                today    to the lab
                 is not even possible for so many of us
                    for whom Covid
is not over

    and four years of doctors wringing hands       telling us
           there’s nothing they can do and we should learn to
pace
                         maybe we just have asthma       or anxiety
                              maybe we’re just sensitive
                                                    or lazy
                  and it never ends
                                                                 and it’s not over
          we keep persisting
          go for more tests
          visit more specialists
          explain to more family
                                                     it’s not over
                                                 but we keep persisting

and in moments of despair
looking out from the pall
we quietly tell other long-haulers
because they’ll understand                    we wish
                                                          it was over
                  and in silence
              with blurred vision
         and shaking hands
                we hold each other up
           by the hundreds and thousands
                                                 by the millions
                                               we keep persisting
                              it’s not over