#MEAction Hosts an Artist’s Salon During #MillionsMissing

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Activism comes in many forms, and #MEAction recognizes the significant role that art can play, not only as healing and cathartic expression, but as a powerful tool to move hearts and drive change. The ME community is host to talented artists all over the world, and we wanted to celebrate their gifts by hosting a virtual Artist Salon during this year’s #MillionsMissing week.

We asked artists to share their work with us, and we were blown away by all the songs, paintings, sculptures, writing, and other works that poured in from the global ME community. We were so inspired as these artists empowered one another through showing their talents, often with art that was inspired by their own journeys living with ME.

 Highlights
The first ever #MEAction Artist Salon had over 50 people joining the virtual event with artists of all different levels of experience sharing their work from a wide range of mediums. Throughout the event, the #MEAction community was supportive and encouraging, and it was a true delight to witness and be a part of on the whole.

Below are some highlights of the artists who participated in the Salon as well as some artists that shared online during the day. This article, however, does not begin to cover the amazing art that was exhibited during the day, so if you are able, we encourage you to watch the full video to see and hear from all of the amazing people who were featured.

Lia Pas is a Canadian multidisciplinary artist, vocalist, musician, and more. With us, she shared some of her embroidery work, which were pieces that reflected what she was feeling in her body as a result of her ME at the time that she made them.

 

To view more of Lia’s work, you can visit her website, www.liapas.com, or follow her on social media: Twitter/Instagram: @Lia_Pa

Body Map
Sensors

John Holt is an artist in residence at Creswell Crags archaeological museum in Nottinghamshire, England. He shared many pieces with us ranging from flow art exhibiting his ME, and ceramics, all of which depicted apotropaic symbols found in paleolithic and Neolithic caves.


To view more of John’s work, you can visit his website, www.flowart.org.uk, or follow him on Twitter: @katjenaar. You can also buy some of his work here.

Two members of the Writing from Our ME Lives writing group, joined the Salon to share two of their written pieces. 

Betsy Barker, who lives in Los Angeles and has been writing about ME since 2020, shared two short pieces that focused on her experience living with ME. Betsy shared a quilt that she crafted during the pandemic which had different patches to represent living during a global pandemic that will be featured in a book coming out next month called, Quarantine Quilts: Creativity in the Middle of Chaos.

Diane, who is
from Ithaca, NY and has survived 37 years of ME with the gracious help of her beloved creatures and surrounding wildlife, wrote about her beloved cat, Stash. She writes that his affection and purring helps to bring light and beauty into even the darkest moments when living with this disease.

The Writing from our ME Lives group meets every Thursday afternoon at 11am PST/2pm EST, and is open to writers with ME who have any level of writing experience.
This group is for people with ME who are interested in writing stories, poems, essays, songs, and diaries. The writing can be fiction, non-fiction, and even whimsical. Check out their next meeting.

Betsy Unger, who has severe ME, shared a photo and accompanying poem with the group. The photo is titled The Ocean Floor. Betsy wrote that the photo “illustrates the experience of temporary paralysis in Very Severe ME. Caged in pain and sunk beneath the weight of the entire sea above unable to even cry out. There but not there, waiting to rise again to the top, afraid this will be the time I won’t.” 

Betsy takes her photos unplanned in the dark, with eyes closed on an iPad. It is not composed, but she believes it captures an experience of Severe ME of which is rarely spoken.

 

The poem Betsy wrote to accompany this is here:

Poem: Underway
This is no bed, it’s a boat–
a great grey ocean liner
with a bellow in its throat.
No tossing and turning, she just plows straight ahead,
splitting the platinum night sea,
her windows a twinkle with swirling lights
of pleasure, ease and greed
No thought of fate
or storms
or ice
or disease.

This is no bed, it’s a boat–
a kayak entirely self-propelled.
It can roll and keep on going;
it can’t be taken down.
With it I explore my memory dreams
of the kettle ponds at twilight.

My paddle cuts the purple liquid mirror,
two of everything.
I poke at the lily pads
with their long stems
reaching deep into the shimmering silt
anchored in all that waits.
I will not pull on those stems;
I am not ready to know what’s ahead.

This is no bed, it’s a boat–
a dented aluminum dinghy,
dragged to the lip of the bay.
I am too small for it’s wooden oars and
they slip again and again from their oarlocks.
But my father is waiting for me.
He wears his red and blue-striped seventies shirt and
stands in his Day Sailer with its moldy
life jackets, salty ropes and splintering cabin
big enough just for me.
The light and the water dance furiously.
There is nothing ahead but journey.
We raise the sapphire spinnaker.
It clangs and flaps, teases and floats
then suddenly snaps, fills and flies.

This is no bed, it’s a boat–
no sickness, no pain,
no end, no doubt,
just pure, blue grace.

Whitney Dafoe, who also has Severe ME, shared two photos. This is what he wrote to accompany them:

As I improved slightly from Abilify, I started to be able to make photographs with my phone. It’s no Nikon DSLR like I used to use but it is still a big deal for me to be able to think in that way again and work creatively again after so many years of darkness.

I decided to start making a photograph every day, sometimes more thoughtful and carefully setup and sometimes if I don’t have the energy, whatever I can, even if it’s just a quick snap. I have been doing it for about 2 1/2 months now. I’m trying to be as honest and open as I can and document what my daily life is like. I try to be mindful of moments that speak to ME/CFS and my life right now and then make photographs that capture these moments as best I can with my phone’s camera. Sometimes recreated and sometimes spur of the moment. 

I’ve created an Instagram account and I’m trying to commit to posting a photograph every other day (to keep pressure off so I don’t push myself and I allow for quick pictures when I’m worn out.). It’s going to be a creative challenge to keep making images with such limited subject matter and not being able to move much. But that makes it fun.

I’m going to be as honest and open as Instagram will let me. 

These two photographs express two seemingly opposing occurrences in my life which sometimes happen simultaneously; Suffering and transcendence.

Julia “Ju” Barrios is an artist in Miami, Florida, and started the SANARTE Foundation to raise medical research funding for ME/CFS. She shared a digital art painting along with some writing.
You can view (or purchase) more of Ju’s work at sanartefoundation.org, or follow her on Instagram: @sanartefoundation.

Gratefulness

Kristine Nilsen Oma gave a wonderful dance performance. She positioned the camera so that we could only view her shoes and feet, and the effect made for a raw and visceral piece that wrung beauty out of chaos.

You can check out Kristine’s blog here

Kaeley Pruitt-Hamm, who has participated in many events for #MEAction and has long been an inspiration to the community, sang a song that moved everyone. Kaeley Pruitt-Hamm performs under the artist name KPH & The Canary Collective because, whether playing solo or with an orchestral indie folk band, she always sings with the chronically ill canaries of the world in mind. Her health journey took her on a wild ride from being an environmental lobbyist in DC to being mostly bedridden for years to now living in the desert, becoming certified as a virtual life transition sound healer at an eco-conscious retreat compound in Joshua Tree, CA. Her albums of music often feature poetry by disabled chronically ill artists.

Sarah Ramey was going to read from her new book but instead decided to sing for us all. Please watch the video to experience what she did during the salon! And don’t worry, we will be interviewing Sarah soon about her new book!

Beyond the virtual Artist Salon, many artists in the ME community shared their work on social media and create projects to recognize #MillionsMissing week as well as International ME/CFS Awareness Day. One such artist is Christina Baltais whose work centers around raising ME/CFS awareness in Toronto, Ontario in Canada. For Share Your Art Day and throughout the week of #MillionsMissing, she shared many pieces with us featuring paintings, makeup, and a series of body casts entitled Broken Body/Enduring Spirit which is a sculptural representation of her experience with ME/CFS.

To view more of Christina’s work, visit her website at wordsasmedicine.com, or follow her on social media. Twitter: @CBaltais Instagram: @wordsasmedicine

Broken Body

Enduring Spirt

Still in Here
Waiting for a Cure
Shelter in Place
Tending and Mending
You Are Not Alone

We’re so happy with the exceptional showing of talent from all corners of the world for this year’s #MillionsMissing. We had more than one individual share that the Artist Salon was their first experience either sharing their art or participating in an #MEAction event, and we love to hear that! What EVERYONE shared was wonderful and engaging. Art is a universal language that binds us all together. And in the ME community, that’s everything.

 Thank you so much to those that participated. We will continue to hold a special place for art in our work at #MEAction. Keep a lookout for another artist’s salon at the end of this year. If you were unable to attend this particular virtual Artist Salon, you can see the full event showcasing all of the amazing artists who participated by clicking here.

#YouAreNotAlone.

To follow the artists that shared work during the salon, here is an incomplete list, given via chat during the event. 

– @Lia_pas IG embroidery
– Sarah Corbett.How to be a Craftivist-The art of gentle protect.
– John UK artist with The Grange symbols. John is now a (Remote) Artist in residence at Creswell Crags Archaeological Centre (by invitation).
– ME Pillow Writers Group, which meets on Thursdays. Join us! 💙
– Ciri – https://www.instagram.com/p/COtESjDB__q/ / Find me here: @cirijohnson https://www.facebook.com/ciri.studio
– Betsy Barker: BetsyBarkerMedia.com
– Whitney Dafoe – www.instagram.com/whitneydafoe
– April: https://www.wevideo.com/view/2177331448  / @chronicmarketplace  IG
– Sam Pearce: IG @africaclockwise Twitter @samfleurpearce
– Kristine Nilsen Oma https://kristinenilsenoma.wordpress.com/2021/01/21/one-digital-dance-performance-a-month-millionsmissing/
https://www.instagram.com/kristine.nilsen.oma/
– Julia careaga  Sanartefoundation.org
– Sarah Ramey – https://www.instagram.com/sarahmarieramey/
– Helen – https://www.shapearts.org.uk/news/artist-profile-helen-jones / Helen’s bedfest page: https://www.bedfest.meaction.net/helen-jones
– Alison Dunlop: @alisonh.dunlop Instagram
– Mary Mattio: https://www.facebook.com/groups/chronically.inspired/?ref=share&exp=3bcf

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