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Lisa Anita Wegner

I make stuff and sometimes write about it

I got an email from an OCAD student who was doing a project on daily creativity and asked me to blog about a typical day in my studio. I am happy to oblige and documenting today November 12th 2013. I was going to wait until a day where I had an interesting meeting or something extraordinary, then I realized that was missing the point. I think its more important what I do on a more typical day. I have no meetings, no phone calls planned. A regular work/ creative day.
Woke up at 9am without alarm, I’m proud of that. I’ve worked to become an early riser lately. I’m sure I’ll go back to a late schedule at some point. But this busy fall/winter I want to catch all the daylight I can. I get up and first snuzzle with my dog Tanner who sleeps on  next to my bed. I open the window to air out my bedroom, make my bed, put on my robe and head upstairs to my kitchen and studio.
Upstairs I greet Aqeel my young dog who sleeps in the living room, he guards the place. I kiss the top of his hot little head and he runs outside. I put on coffee, pour some blueberry juice and sit down to schedule my day.Today is my dad’s birthday and I will write on his Facebook wall, pour my coffee in my favourite snowman mug and give him a quick call. Actually I took a snapshot of a framed picture of us and posted that to his wall.
In the morning I check my Wunderlist Application, I have all my project lists on there and I do a scan to refresh my brain on the status of my current work.  I am making my morning list (9:30am).
Having my studio at home for the first time I take advantage of being a mere fifteen feet from my stove all day long, to simmer some super spaghetti sauce. Tonight I have one carnivore and one vegetarian friend for dinner so I’ll simmer two sauces for six hours or so for heavenly blended taste. First step is all the chopping which I like, I do this to music and do my best to be present and lose myself in every moment I can.
I sent a thank you email to folks who helped with research. I am always thrilled that folks want to help my storytelling. (9:30am)
I am doing Internet Movie Database updates (9:45am): Queen of the Parade went up on IMDb as the first feature length film (shot on the Red Epic) co-directed by Carl Elster and I. I’m having some difficulty adding the folks who aren’t yet on their service- the art/theatre folks. And finally the Canadian Comedy Awards Nominations have gone up on their site which means I can finally add them to my profile. I was nominated three times for best actress in a film. One year I lost to Catherine O’Hara (bragging and name dropping is the lamest sorry). Plane Crazy a feature doc in a tortuously long post production, will not go up on IMDb as we don’t have a release date. Submitted updates and got emailed receipts for the Canadian Comedy Awards.
I open the window for a bit of fresh air and lay out my camping mat and put on an 18 min relaxation muscle relax guided meditation from Youtube. Headphone, dark, quiet, incense. Ahhhh. (10:10am) I Birthday skyped with my Dad. We were both drinking coffee. Cute. (10:30am)
Now to prepare the chopped vegetables (10:35am). I’ll put on Diff’rent Stroked on Netflix during the chop. I will dance to the opening theme, it is inevitable. During this time, my ideas come to me, projects solidify and by imagination plays hooky from being an adult. I decided to grate the carrots for the vegetarian sauce, for heartiness. Also I will make a second cup of coffee. I had a little Quisinart chopper that Ben gave me awhile back. I got it all loaded up to chop finely and no go, the appliance didn’t work. So I chopped by hand and grated the carrot. Now it’s 11:30am and the sauce is on time. I have to remember to stir with either the meat or vegetarian wooden spoon. It took a whole hour to chop by hand and prep two sauces.
11:35 I checked LinkedIn and the new folks who added me. I don’t focus much on this site but it is a great way to directly connect. Got a call, my christmas present couch from my parents is on time for delivery tomorrow. I lent my neighbour some of our location traffic cones. A neighbour is waiting for a dumpster pick up and needed the spot in front of her house clear. Four cones are better than two chairs and a string.
I got an email through my site, an brazen young filmmaker declaring his talent in a misspelled email and threatening that if I don’t use his script it will be my loss. It sure will be. Also I got sent a synopsis of a script despite the clear message on the page that we don’t accept unsolicited screenplays. I got a reasonable intern application, my last intern Rob Small finished officially in September from Loyalist College Film and stuck around until just recently. He feels like one of the team. I could take someone new for the winter, I’ll think on it.
I have been pondering and meditating on my large scale video/performance/projection mapping installations for next year. I have been able to conceptualize and visualize roughly what I want to do. Working title is MAGICK. I want to reconnect with Vincent John Vincent of Gesture tek and let him know the the first project I spoke to him about (3d projection mapping installation for a Buddhist Temple) is something I decided to move away from and MAGICK is what I’m moving toward. I will find out next years Nuit Blanche themes (chosen but not announced) and start to craft this idea in order to mesh with the city’s idea for next year. I also want to investigate the other company interested in sponsoring our venture. My sponsor, friend and cinematographer Carl Elster brought in AVW TELAV as someone we might partner with. Exciting!
There is a magician I might bring in for MAGICK, I feel the theme of Victorian magician and classic magic tricks might be the way to go. I do a google search of Victorian magician. Google image searches are a big part of my work process. I’m very visual and that is a great way to give my brain stuff to chew on. I’m going to do another 8 minute meditation now after stirring sauce.
(12:15am) I am trying to find a contact phone number for the curator’s assistant for Fashion Arts Toronto, we are looking to possibly put Queen of the Parade into this event in the spring but I’m not sure if their set up can physically support our 25 foot dress with video legs. 1391560_10153390828525521_1913973388_n
It was made for Nuit Blanche 2013 and I am happy that it might have a Toronto gallery show before it gets sold. Right now the entire piece is in my small storage space. I want to talk to someone in person at FAT to explain the weight size and my plan on how we can hang it in a gallery.563101_10153461616975521_1603103261_n
I’ll write a quick email to them to find out who I can talk to in person. Much better for me than emailing sketches back and forth. To have this 200+ pound piece up I figure I’ll approach a theatre designer for advice/ help actually physically hanging it. queen of the parade
(12:20am) I just had another inspiration for the new sound and image video study series I’m doing. I’m going to work on that for a bit, I’ll post the one I made two days ago, for those interested.
I am looking at projector specs, LED projectors are really coming down in price. I’m getting one for Christmas from the awesome John Taylor. There are these really cheap awesome little ones from China but the shipping isn’t awesome. John doesn’t want to risk that.
I stir the sauces. Woah they already smell and taste awesome. I just got sauce on my keyboard. I was going to make some apple carrot juice but after chopping vegetables for an hour I can’t look a carrot or apple in the face. Diff’rent Strokes is switched to a documentary called First Out of Africa. I find when I’m working I like something running. 1980s sit coms are great for the danceability every 22 minutes (the Alan Thick theme songs are the bomb). Or I like to learn things so topdocumentaries.com is great. I was tickled when last year they featured a doc that I worked on Tales of the G20. I also like to have Eddie Izzard stand up running when I’m working too.
I am tweaking the master list of projects on mightybraveproductions.com. This is the first time I’ve put all my projects in one place. Not needing traditional resumes (the closest was an actor CV) I’ve never done this before. I keep remembering projects and art shows that I have forgotten. Someone I want to work is skyping me… i’m going to take the video call. I’m tickled for the unexpected contact! (12:30pm).
My mind is buzzing from the very quick online story meeting. I need to think for awhile, let this stuff cook. (12:50pm) It’s strange writing everything down as I think of it or do it. It’s actually like having an intern- I speak everything out loud that I’m thinking so they can get a good sense of my process.
(1pm) I just sent my street address to my dinner company. Turns out I got the dinner day wrong- it’s tomorrow. But the sauce will actually be better tomorrow. So now I have a free evening to do anything I want. I might venture out with my new camera and shoot the alley art, which I am obsessed with. Ok back to story thinking. I think I will lie on the floor with my dogs, stretch and think about story structure.
(1:11pm) I actually re-arranged my studio a little bit. I’m always figuring out how to make my space better for the things I do. I have my video editing area, my easel (dabbling in painting with nail polish) my table and my meditating space (mat on floor with space to starfish my limbs out). I realize that perfecting a space is an ongoing process.  Thinking about it, I do this at least 10 minutes every day I’m here. This blog is very interesting for me to write, seeing exactly where I put my focus in a day. Now going to think and stretch. And eat some meat sauce.
I stretched, with my dogs and now I’m choosing a 6 minute and then an 8 minute meditation in the tub. I love turning my phone off and being unreachable. Its feels so free to be able to jump full force into a moment. and not be distracted. I just remembered two more art shows that I had pieces in at Buddies in Bad Times. Instead of adding them to my site and possibly get pulled back into my computer, I jotted them down on my paper list. At this point, I will meditated in the tub and then I think the sauce is far along enough to turn it to the lowest setting and head out to High Park with the dogs. This walking time is my second specific creative thinking time during a day. Sometimes I listen to music, Sometimes guided meditation. More often than not silence is the way to light my imagination on fire. Ok now the hot bath water will help soften my muscles for deep relaxation.  The calmness is intoxicating and the way forward creatively for me. The excitement comes natural, the energy comes when I’m excited. It’s the calm grounded feeling that I strive for every day. This feeling is how I know I’m doing the right thing. I ate some sauce on the way to meditate- the veg is tastier than the meat. What?! (1:43pm)
(2:48pm) Woah my thirty minute meditation bath turned into an hour- the ideas were flowing so I didn’t get out. As well as the meditations I did two guided hypnosis, also from youtube. Now I’m a bit of a prune but a relaxed energized one. I also had insights into my own create process and how I want to refine it. Thanks Student from OCAD for asking me to do this. I think I might adopt a streamlined version of this to keep track of my process to keep it fresh.  I like to document through art and video, I can do words/ process too. I just stirred the sauces and ate some more. Now I am heading for about 1.5 to 2hours to the trails in High Park with my dogs. The best time of the day for my body, heart, soul and brain. After I’ll write down a streamline of my process from bath/ meditation and dog walking. I was going to jot some notes, but I am going to trust my brain to remember and synthesize my thoughts when I get back. Brain, I trust you’ll spit it out even better after it cooks. Like my sauces.
(4:15pm) I got home from the park with a cool hardwood picture frame. I stirred the sauce and am now sitting at my work table with my laptop. I just Googled “longest simmering spaghetti sauce” and found a lady who simmers her sauce for 24 hours. That sounds like a euphemism but it’s not meant as one. I do little upkeep bits on all my projects and while I’m doing other stuff my actual creative work gets done.  Here are a few notes on the status of my current projects. I nurture them most days. At least to look at the list and keep the to-do items fresh in my head.
My Favourite Mistake:  My first feature film in the white tragedy style (a name that I have given my flavour of storytelling -it borrows much from black comedy). I have made 12 short films with this story telling mandate and I’m ready to move into long form. The characters are alive in my mind and after meeting with friend and adoption agent Maureen last week for research, I got some more authentic ideas based on her experiences from families in Toronto. It’s a story that involves adoption and I wanted to check the facts. I’m starting to see the shape of the overall story and scenes. And the ending is clear to me now too. I feel like these characters are friends that I care deeply about and I think about them often.
Jazz FM TD Bank Project: I am meeting with Ab Boles and hopefully Lorraine (of underground jazz joint)  to pick their brains for a good match of jazz musician for an upcoming project at The Revue Cinema. Jazz or Swing I think is the way. I’m keen to hear their thoughts on a kind of music I know nothing about. I would be making art videos that play on the silver screen if this project lines up.
I want to re-watch footage my intern shot of The Queen of the Parade going up running. It is still tricky to really explain the installation even with photos. So I think cutting together a few minutes of video is the way to show. The footage is shaky and blurry. I do wish there had been a bit more time put into this aspect. Luckily there are hundreds of videos posted online- I might do a collage of other people’s footage to show the 25 foot Queen off to her full glory and ten foot video legs.
Website tweaking, LinkedIn and IMDb are three ongoing picky things I do on a lot of days. I also really benefit from making something every day. Digital art/ pixel painting/ self portrait/ video study or art video. I find that my creative flow eking out little bits here and there, really adds up. The first two years I was sick I created more hours of therapeutic video art than I did whilst running a small production company.  A little bit every day. I guess I’m really understanding why it’s called an art practise. And a meditation practise. There is a such a benefit to the consistency. Since 2008 I have spent countless hours editing photos and video and now I am proficient in Final Cut and Photoshop, two skills I never thought I’d have.
The Brazil US Canada Project is an ongoing online collaboration with Luiz Barcello a Brazillian filmmaker, Steve Weiss a filmmaker/programmer and Lesie Barton and artist/filmmaker like myself. We haven’t had a meeting in awhile because of our schedules, but Luiz is coming to Toronto in December and I suspect hashing him here will freshen the interest. I’m keen to see where this goes.
Art installations in the works: MAGICK (projection mapping/ performance/ interactive) NEVERWET on WHITE (technology/ performance) WE CAN BE HEROES (performance with Lisa McKewan) and this idea I have about a tin bird man.
In writing this especially, I realize my days are full of millions of moment nurturing my creative process, body, mind and projects. I used to feel a rush in my work- like I should be farther along or have done more. Now I realize that I’m exactly in the right place and the very nature of the ease of a relaxed day is where I need to be to move forward with worthwhile work.
So that what I do on the most usual boring day that I have here at Haus of Dada in the dada laboratory. For me, it’s about stretching and nurturing my brain, spirit, imagination and physical body. And a commitment to myself to continually strive to find my most authentic voice.
I’m going to read this over and call it a day. At least I think so right now… I do like to keep regular hours to not burn out. Making only films I used to think “regular hours” were 12 hours to 18 hours a day seven days a week. Six to eight hours a day will ultimately yield more creative output than pushing hard and crashing periodically like I used to.
Yours truly and appreciatively
Lisa Anita Wegner.

I believe every child is born an artist, and retains creative urges even into an adult life where it seems they may have been lost. During dark times, it is our role as artists to dream up the future and propose new ideas of what’s possible for the future; and then make our dreams resonate with others, to spark their dormant imaginations.

The theme that runs through my work is Liberation Through Dreaming, and I use my stories and art to tell hard stories elegantly and with humour to bring attention to poverty, disability and social injustice. Through comedy and absurdity, I invite the audience into my crip universe, where we all can be stars and agents of change; and our imaginations are nurtured so that we can thrive and dazzle.

Being on ODSP and living below the poverty line has opened my eyes to the harsh realities of disabled life in Toronto. I want to dazzle the public with my otherworldly art, to spread awareness to foster change. I want to propose brand new ways of thinking and doing things, and welcome others to dream of a future where disabled folx are nurtured and cared for, not discriminated against and hidden away. The more people I can reach and invite to join my dreaming, the stronger the creative force for change will become.

As a public artist, I also want to astonish people with magic in unexpected places. Particularly in the current climate of fear and anger growing in the shadow of the global pandemic, I believe that putting art out into the world – free and equally available to everyone – is the way to uplift people and restore faith.

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WE are driven to push forwards, innovate, change, contribute to a questioning of old, outworn modes and to bring in new perspectives on the higher levels of consciousness – faze out the systems of separation and work to introduce new, inclusive ways of operating in unity. 

As spirit we know that there are no true boundaries between human beings, there is no separation. We all come from the same source, and we have incarnated as any imaginable variation of human being throughout our long existence – we have all been black and white at different times, we have all been women and men – and spirit wants us to remember this. From their perspective war and conflict on earth is due to the illusion of separation – based in the idea of one group of human beings as essentially different from or superior to another. In spirit we are all the same. 

Two perfect pieces of the most beautiful creation ever seen – the whole, you together in harmony like up and down, back and front, sky and earth, fire and water. 

Stretching through dimensions to each other like lions tied by spheres from star to star. Animalistic yet angel-winged. We come together. Brutal/soft. Hard flying. Comedowns nowhere. We stay up, fly together. 

Time means nothing in spirit but I’ve never been the patient type. I am a man/I am a woman/I am spirit/I am time/I am an eternally fading/exploding star. She is herself yet she is me. I am her yet I am myself. We are ancient yet children. Thousands of lives. Always each other. 

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your face is there like a fever dream

in the background 

like you’ve always been there and all ways will be.

I saw you looking for me

On the other side of tomorrow there is no need to worry

WE will decorate for the holidays

Coffee and candies in the bathtub

artful living

and the feeling of home

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radical softening.

when there is a window open in my nausea, I eat

when there is a window open on my pain, I move

when there is a window open on my spasming muscles, I dance

when my cognitive function allows, I plan

Sometimes I wait

I am reclaiming my body one molecule at a time

I have reclaimed my mind

it is free to roam and create

all the time.

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Lisa Anita Wegner (°1973, Toronto, Canada) creates performances, installations, films and conceptual artworks. By parodying mass media by exaggerating certain formal aspects inherent to our contemporary society, Wegner makes works that can be seen as self-portraits. Sometimes they appear idiosyncratic and quirky, at other times, they seem typical by-products of American superabundance and marketing.

Her performances often refers to pop and mass culture. Using written and drawn symbols, a world where light-heartedness rules and where rules are undermined is created. By rejecting an objective truth and global cultural narratives, her works references post-colonial theory as well as the avant-garde or the post-modern and the left-wing democratic movement as a form of resistance against the logic of the capitalist market system.

Her work urge us to renegotiate performance as being part of a reactive or – at times – autistic medium, commenting on oppressing themes in our contemporary society. By using popular themes such as sexuality, family structure and violence, she creates with daily, recognizable elements, an unprecedented situation in which the viewer is confronted with the conditioning of his own perception and has to reconsider his biased position.

Her works demonstrate how life extends beyond its own subjective limits and often tells a story about the effects of global cultural interaction over the latter half of the twentieth century. It challenges the binaries we continually reconstruct between Self and Other, between our own ‘cannibal’ and ‘civilized’ selves. By demonstrating the omnipresent lingering of a ‘corporate world’, she touches various overlapping themes and strategies. Several reoccurring subject matter can be recognized, such as the relation with popular culture and media, working with repetition, provocation and the investigation of the process of expectations.

Her works are saturated with obviousness, mental inertia, clichés and bad jokes. They question the coerciveness that is derived from the more profound meaning and the superficial aesthetic appearance of an image.

-500 Letters

Photo by Angela Chao at The Art Gallery of Ontario 2015

“Over the years that the way I pursue my work as been called amateur. Found objects and donated equipment have become my jam and I realize an unending burning desire to tell stories through any means possible. I take it a compliment as I will always been an amateur artist in the true sense of the word. I do my work for the sheer love and hunger of it, and I will never stop. Through volume I am becoming practised with a body of film, installation and performance work. I feel lucky that money will never be a motivator of my creative output.” -The Ubermarionette 2020

Photo by Angela Chao 2016

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Lisa Anita Wegner is a Toronto-based storyteller, performer, actor, artist, performance artist, podcaster and filmmaker. After a breakdown at the 2008 Cannes Film Festival, Lisa received a diagnosis of Complex Post-Traumatic Stress Disorder (CPTSD). After many years of needing a lot of experiencing exhaustion and brain fog – and just thinking she was “tired and extremely bendy,” Lisa was diagnosed with Ehlers-Danlos Syndrome.

Lisa chats with Shaunna about creating through her mental and physical health issues, the artistic milestones she’s accomplished and her influences from Annie to Lady Gaga to David Bowie, being reflected in She’s Gotta Have It and Rushmore, and the soothing rewatchability of United States of Tara, Transparent and I Love Dick.

Lisa Anita Wegner’s performance art piece, Intangible Adorations, will be showing as part of Workman Arts’ Rendezvous With Madness Festival. In its 27th year, Rendezvous With Madness is the largest mental health festival in the world, showcasing film, art, comedy and much more, beginning on World Mental Health Day (October 10) through October 20th. To learn more about the festival and to purchase tickets to Intangible Adorations, as well as their other events, please visit workmanarts.com/rendezvous-with-madness/

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I had been attempting to be more authentic in how difficult my days can be with two invisible invisibilities like complex-Post Traumatic Stress Disorder and Ehlers- Danlos Sydrome. It’s in my nature to focus on the positive and underplay how hard things get.

I get behind that philosophy, however I have been in a flare up state for several months now. If I’m honest I haven’t spent much time out of a flare up for several years. I’m tough and I’m strong and I’ve been working on self-care for fifteen years. But when the pain/nausea/brain fog/core spasm/exhaustion cocktail kick in, all my years of self-care expertise go out the window. I barely know who I am. I have no bandwidth to handle any experiences. My focus is entirely on trying to breathe and get from moment to moment. The world is too bright and loud and I am in more pain and discomfort and past the point of exhaustion many times more than I thought my body, spirit and soul could take.  

The other day I was chatting with a friend who asked how I was. I said “things were hard and I’m in a flare up and that in this moment I feel better.” That was true, and me still trying to be positive. For a few moments I could breathe and think while I was answering her message. Directly afterward my chest started to cramp up and I doubled over onto the floor. My diaphragm cramped up and I felt like my whole breathing system was cramped down. I felt like I was drowning. I was sure I was going to faint. At least I was already on the floor.  My friend well meaningly wrote back “I’m glad you’re feeling better!” I wondered how I could have given such a wrong impression. I don’t want to keep repeating “I feel like I’m drowning. The nausea takes up all my bandwidth. I can’t lift myself up. I can’t take the pain but each day it’s escalating. I can’t take the overwhelm. It’s scary each time my cognition drops out and I am floating in a wordless place of fear and pain and overwhelm”. I want to write another script for myself. 

I have a huge art project in the works, and I have only a faint sense of it happening. I don’t know how any human being can stand this place. I can get incredible amount of work done in say in one hour on a phone meeting. And then loose the rest of the day to just getting through intense symptoms. 

I’m sure some version of this feels familiar to many with chronic illness. 

These are versions of sensations I’ve had my whole life. I told my doctors and gym teachers all these feelings as a child and it was always put back to me that it there was nothing wrong with me. And if there was, it was my fault. I was lazy, I was told I didn’t want to participate and that I was weak. My digestion was poor; therefore, I must be eating poorly. No one asked me. They told me how it was. So as a child I stopped feeling the pain and just internalized this feeling of extreme overwhelm as failure. I was weak. I was lazy. It’s my fault. I must not want to participate. Adults asked me “What kind of kid is tired all the time?” I didn’t know but it made me feel like there was something wrong with me.  I could fall asleep anywhere as long as my torso was resting on something. And I was in this alone; I had to figure everything out.  I had to show the world that I wasn’t lazy. So I buckled up and internalized this incredible difficult experience of living with a connective tissue disorder.  It took seven years of intense therapy for me to be able to locate the body feelings I was suppressing in order to get by. Once I opened myself up to feel the sensations, my life got more difficult but the road toward healing could begin.  

So the best thing I can think to do is to record a day in all its agonizing glory, in order to honour and sit in the feeling. To be truthful about my experience and to let other folks in similar positions know they are not alone.  And honestly, this is what my days have mostly looked like for maybe two years. If I say I’m better I am faking it to some extent. All the time. 

So I’ll start recording my today. I’m two weeks away from opening a show called Intangible Adorations: Experience The Icon. I think it’s the best thing I’ve created to date. It’s part of a festival called Rendezvous With Madness, a peak artistic experience for me. I often hide in my art practise. It brings me joy and is what I’ve been using to hold on my whole life. I have can have a brutal day and then have some good news about the project. I can enthusiastically talk about the project news for a short while and pretend the rest of the day away. 

Dear Diary: I wake up in the morning and my first wave of nausea and emotional overwhelm engulfs me at the in-point of consciousness.  I realize I’m awake and often my throat tightens with overwhelm and I feel tears tickling my eyes. My first thought is “I’m not sure I have the strength to do this again”.  I move a little bit to get the sense of where my body is at. I breathe in deeply and my torso cramps and spasms and tightens around my diaphragm. I do my best not to panic when I can’t take in proper breath. I imagine releasing my shoulders and try to picture butter melting. Sometimes this helps me, this morning it starts the feeling that there is a burning tight knot from my left ear that burns through my body stabbing like hot metal though my lungs and it grabs onto my lower hip. This tightness cramps into a searing pain and if I think about it too much, it gets tighter. The more I try to relax, the tighter it gets. It cramped up my already immobile digestive system into another level of cramps. Breathe… no no no, don’t cramp up more.  I lie still hoping to get my breathing better before trying to sit up. I find a moment between cramps to sit up. I feel faint, I tear up with overwhelm. I use a roller to help me sit up. I feel faint again. My fingers and toes tingle and go numb. I breathe in again and slowly roll to my left toward the edge of the sleeping mat. My torso muscles scream in cramp-y pain, and I feel like I don’t have it in me to move or get upright. The pain and tightening is increasing, I must get up before I go into full spasm. I breathe in again reminding myself of the steps.  Roll over. Sit up. Stand up. Roll over. Sit up. Stand up. When I am this overwhelmed I lose sight of what I am doing mid action. I am out of gas, my body having exhausted itself already. I roll. I wait. What am I doing? Lying on my bed feels overwhelming as it feels more and more uncomfortable.

My thought cramps tight and it feels like there is a thread from the top of my head yanking a cramp into my chest. My heart races, I feel like I’m breathing though clay. I have to move.

I test my knees and stand up wobbly like I’m an extremely old person leaning on the wall. I catch my breath. My psoas tightens and spasms tucking my tailbone under which feels like hot metal. I try to stand up straight and support myself on the wall. I feel faint. I can’t breathe. What am I doing? Standing up. Another wave of nausea hits me and my sense of smell intensifies. I can smell the garbage in the kitchen and it makes me wretch and my mouth fills with saliva as it feels like I’m going to vomit. I can’t breath in as I’ll get more smell and more nausea. I rush to the back door and stick my head outside. I try to breathe in fresh air and the physical exertion of getting my body to the back door has my vision going spotty. I feel like I’m going to faint. My knees buckle so I hold on to the doorframe. What am I doing? I don’t know. 

I can’t get a deep breath. I am exhausted beyond belief. I can’t catch a breath. I feel like I’m drowning.  Slowly trying to move my body, which feels like cramp-y painful tightens that somehow keeps increasing past what I think I can take pain wise.  Now my upper back begins to spasm, and burn. I try three breaths, try to not cry from the overwhelm. My body doesn’t feel strong enough to get itself up from the floor. I feel like I have just run a marathon and written an exam. I am depleted mind body muscle and soul. I feel like I can’t do even one thing.  I’ve been conscious for maybe ten minutes this morning. 

When I think of tasks that need doing I get waves of panic that electrocute me to a place brighter than pain. My heart races, my hands and feet tingle sometimes I have coughing spasms. I was in trauma therapy for seven years at Women’s College Hospital in Toronto and learned how to lessen panic waves. These current ones are based in that I don’t know if I can complete any task, no matter how small. I am like a toddler with a bad flu and I’ve been asked to drive a truck while explaining a complicated subject. There is no way I can execute what is asked of me. Through determination and craftiness I manage to still get some things done. With a lot a help and a super human amount of effort execution help and planning.  

I put three towels in the laundry and I am fighting for breath. Bending over has me feeling faint. The tasks of soap, fabric softener and closing the lid have my fingers popping out of their sockets, and then I have to lie down on the floor to rest before climbing the ten stairs. The floor is freezing and hurts my back, I have no choice but to rest, maybe five minutes until I know what I’m doing and I have the strength to stand again. I crawl up the stairs and start making coffee. With sky-high nausea, coffee cuts my nausea most days. Making the coffee is challenging. I start by assembling beans, grinder and cup. I have to squat on the floor as the effort has started tears flowing down my face. I don’t know if I can do this. What am I doing? Making coffee. I stand up and pour my coffee beans. The grinder feels far too loud and is over stimulating my worn out senses.  I grind and then feel faint and lie down on the kitchen floor. Maybe I don’t need coffee I’ll just go back to bed. A wave of nausea comes over me. I can’t stand up. My mouth fills with saliva and it feels like I’m going to throw up. I walk a circle in the kitchen reminding myself who I am. Why I’m here and that coffee will make me feel better. I try again. I get the water into my cup. My wrist gives way and I drop the cup. Bending over to wipe up the water has me faint. I feel my system trying so hard to shut down. I don’t know what I’m doing. I smell the coffee beans. I fill another cup. I hold the cup with both hands so my fingers don’t give way. I get it into the kettle. I lie on the floor while it’s boiling. 

Left side of my hip flexor seizes up painfully and I’m on the floor seized over to one side. I can’t stand up all the way and the pain is so intense I feel I can’t breathe at all. I feel faint. My fingers and toes are tingling. I crawl to the fridge to get milk and a Banana Bag hydration pack. I get my milk into my coffee while doubled over and squat to try to relieve the pain. I sip my coffee but it doesn’t bring me the taste joy I’m hoping for. I taste nothing and gag. I feel like all that effort was wasted. It doesn’t even matter if I make coffee. Maybe I shouldn’t have even tried.

Then a temperature control flare starts. My hands and feet turn to ice and my core muscles start shaking. My teeth rattle together. I get so cold I am shivering and shaking. I feel like I’m faking it the way it shakes me like a rag doll. Then the chill turns into a heat flare. I am still shaking and then I start to sweat. I can sweat through several layers of clothes and then the cold sweat brings me to a freezing place when bedding and clothes are wet and cold. Sometimes I’ll have two or three temperature control flares in a row. These are one of the most exhausting experiences. And it’s gross. I’m soaking wet with drops pouring off my face and I smell like I’m in deep distress. I don’t know what’s going on but I know I can’t take it for much longer. 

I get a small wave of what feels like appetite. I have a paralyzed digestive system with EDS. I walk into the kitchen thinking I can make toast. I pop a piece in the toaster and lean on the counter for support. I feel faint; I forget what I’m doing. Toast pops up. The smell of the cooked bread brings on a wave of nausea and I double over. I can’t even butter the bread. I’m wrenching from the smell of the bread and butter and wretch into the sink. I know I can’t eat the bread and recycle it. I’m sad how much food I can’t eat. I’m malnourished with a protruding hard extended belly. 

There is an ongoing panic if I have any responsibility. I don’t know if I can do it. If I can get anywhere, or commit to anything but lying in my bed. Often I don’t know who I am or what I’m supposed to be doing. My hips, knees, ankles give way. I walk into things and walls, I feel like I’m just about to go down. If I’m carrying something I drop it. I barely feel like I can stand up for a few minutes. The idea of going to the streetcar stop has me in tears. Travel is so difficult when a system is shutting down. It takes it all out of me. When I am out, I am probably faking it to some extent. There are pain waves I pretend aren’t there. I don’t know what’s going on. I don’t know why I’m here. I’ll make eye contact and smile. I am beyond exhausted.  I am a smartphone with 4% battery left and I’m forcing it to run large apps. It won’t go. It’s can’t go. It’s too much.  I collapse to the kitchen floor.

A friend checks on me and picks me up some groceries. He walks my dog. I lie in by bed with my eyes half closed trying to release the insane tightness and muscle cramping in my body. I think I want to go outside. Just to the coffee shop at the end of my street. I’ll get dressed and go out. Even just ten minutes. I stand up to get dressed and feel faint. I start to put on pants and the act of lifting my legs takes everything I have. I realize the towels are still in the wash. Moving them to the dryer has me lying on the floor again. I put my pyjamas on and crawl back up the stairs. I’m not going anywhere. Instead I open my back door and try to get some sun on my face. 

To add some context, I used to run a film production company and ran complex creative projects. I am an extremely organized reliable person. It was not uncommon for me to work 16-hour days. So this experience is far from who I am and what I’m used to. Now I can do one small thing every two days. I’m extremely self-sufficient. It is humiliating to let people know what my days are like that I don’t know for sure if I can do something. If I try to do too much then I loose additional days. And the more I push the less cognition I have and the scarier my life gets. It’s a constant free fall and I don’t know what you’re going to get every day.  It’s hard when people refer to me as having “Time Off”. 

There is deep burning pain in my whole body that is eased by compression items. Today I’m too exhausting to put these on, and if I have a sweat out in compression items they get soaked and then they are harder to remove.  I think I’m disassociating when the pain gets too intense, and I lose time and feel like I wake up sometimes and suddenly have enough bandwidth to be aware of my environment. Sometimes I’m on the floor or I suddenly I’m on a streetcar. I don’t know what I’m doing. Sometimes it’s the automatic pilot of my life. I’m scared almost every day and I am so tired. I wouldn’t trust myself alone if there was any other way. And it’s weird to be so open about how impossible my days are.

I have been told I am currently too healthy for assistance. In the past I had an occupational therapist, a mental health nurse, a house helper and a caseworker all coming to the house. With four helpers I was ok. Now I’m told I am too mentally healthy for this help (and some has been cut by out government). And I have been told I’m not disabled enough to get in-home help. I live alone and sometimes have days lost in a pain haze, mostly lying on my floor.  I was able to get grip bars installed in my bathroom, which makes me less scared to wash when I have the strength.  I do have a lot of friends and family who chip in and help out a lot.

The anxiety around running a performance workshop and a large-scale performance when my pain is so severe makes me feel like I can’t hold on.  It’s scary and hard and I realize I have to tell the truth. So yeah my career is going well and I know I can look young and fresh and I have a lot of enthusiasm for my art. I need to be truthful that as well as that, I am barely holding on. And it’s been like this for a long time. If I say I’m feeling better, I’m telling you a version of the truth. And it might only be better for five minutes or an hour. 

So I am writing this out as a blog post because I needed another way to process this. I have been on a waiting list for the GoodHope EDS clinic since last January, and we’re hoping I get in January 2020. 

My show opens in two weeks, and I have to get to rehearsal this afternoon. I am so blessed for my incredible creative team headed by Scott White. Many of those on my team are volunteers, and they help me keep my creative vision online. Since I am in this much pain and cognitive distress, I guess that it is a miracle that the show will go on. Art saves my life every day. And everyday I hope for some relief. 

If you want to see what kind of a show someone with two invisible disabilities puts on, check this out. Get your tickets if you are in Toronto October 12-19 2019 https://workmanarts.com/rwm-events/intangible-adorations/

www.broadwayworld.com/toronto/article/Celebrities-In-Disguise-Tackle-Mental-Health-In-INTANGIBLE-ADORATIONS-EXPERIENCE-THE-ICON-20191001

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The anima and animus are described in Carl Jung’s school of analytical psychology as part of his theory of the collective unconscious. Jung described the animus as the unconscious masculine side of a woman, and the anima as the unconscious feminine side of a man, with each transcending the personal psyche. Jung’s theory states that the anima and animus are the two primary anthropomorphic archetypes of the unconscious mind, as opposed to both the theriomorphic and inferior function of the shadow archetypes. He believed they are the abstract symbol sets that formulate the archetype of the Self.

In Jung’s theory, the anima and animus make up the totality of the unconscious feminine psychological qualities that a man possesses and the masculine ones possessed by a woman, respectively. He did not believe they were an aggregate of father or mother, brothers, sisters, aunts, uncles, or teachers, though these aspects of the personal unconscious can influence a person’s anima or animus.

Jung believed a male’s sensitivity is often the lesser or repressed, and therefore considered the anima one of the most significant autonomous complexes. Jung believed the anima and animus manifest themselves by appearing in dreams and influence a person’s attitudes and interactions with the opposite sex. Jung said that “the encounter with the shadow is the ‘apprentice-piece’ in the individual’s development…that with the anima is the ‘masterpiece'”.[1] Jung viewed the anima process as being one of the sources of creative ability. In his book The Invisible Partners, John A. Sanford said that the key to controlling one’s anima/animus is to recognize it when it manifests and exercise our ability to discern the anima/animus from reality.

From Wikipedia. I feel this is a lens through which folx can view my work.

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