#MEAwareness: Artists with MEcfs

According to The #MEAction Network‘s timeline of events, today, Monday, 5/10, is a day to Share Your Art!

They are hosting a virtual Artist Salon today from 12pm-1pm (PST) / 3pm-4pm (EST), as a way to celebrate and highlight the amazing artists within our community. It will be a fun gathering where artists will share their work and the inspiration for their pieces, plus the role art plays in their lives. Click the link to join in!

As they said when announcing the event: “#MEAction recognizes the important role art plays within the ME community and activism as a whole. Over the years, we have had the privilege of witnessing many of this community’s amazing artists’ work when it has been shared online, featured at protests, or performed on calls and events.”

#MEAction first incorporated art with advocacy actions in 2017, with a virtual event called #Bedfest. Although artists wanted to continue the event, none of us have been well enough to do so! However, a Facebook group bearing the same name lives on, where us #MEep artists share our work.

Some examples of past art shared for #MEAwareness include the #MillionsMissingStockholm Performance in 2018; this stop-motion video project ‘Walk to the mailbox’ from 2016; Bristol Music from 2019; Christina Baltais with a collage called “Out of Reach” from 2020; and ME perspective‘s line drawing (that they call “wild, creative, experimental”) from 2018.

One thing that #MEAction did not point out in their information about MEcfs artists is how difficult it is for patients with MEcfs to create anything at all. These days, I typically stick to photography with my phone (I miss using my “real” camera! but it’s just too heavy!), and pretty much shoot only things in my own yard. Most MEcfs artists have made adjustments to the amount or type of art they do.

As Mary Mattio, an artist in the #Bedfest group wrote, “I work on projects laying in bed, in a dark/dimly lit room with limited energy. For years I’ve only been able to do either writing or digital art until more recently. Have to do it laying in bed, in the dark space, so I’ve adopted a messy layered mixed media style. Perfection be gone!” (She asked me to direct y’all to this post on her blog, Nerves in Nature: Exploration in Photography #1, which works perfectly with today’s theme!)

I am pleased to participate in this action by sharing art by three patients with MEcfs. I hope you enjoy their work and words.

Ann-Britt: ME in our own words

To create this piece, the artist asked MEcfs patients to give her words describing what MEcfs does to them (click the piece to see it larger). She told me that the words are from about 100 patients suffering from ME. Some of the words are ones I contributed (though I can’t remember which ones, exactly), but they all apply. Please take the time to not only look at her drawing, but also read what she included – things that make up our reality.

I should also note that Ann-Britt created this beautiful, heart-wrenching piece eons ago, and I asked her then if I could post it on my blog… and then kept telling her I was putting off publishing it. Now, I’m kind of glad I did, because it fits perfectly with today’s post.

About Ann-Britt:

dSavannah note: Ann-Britt told me that her husband wrote this bio for her. She said “I think he might have done too much 😃”. Of course, I will publish whatever I’m sent, so here you go (tho, I do have to confess I added in a few commas and a couple of paragraph breaks):

Ann-Britt was born and raised in Denmark where she loved singing, dancing, drawing and swimming. After doctors told her as a young child to take up swimming as physical therapy for weak hip and knee joints, she did so with gusto. She excelled and went on to become a national champion swimmer. Then after moving to California in 1992, she took up figure skating and qualified for adult nationals. She raised a family, taught swimming and pursued her love of singing. Once her kids were grown, she went on to become a Pilates instructor and started getting singing gigs around town.

In May 2018, Ann-Britt got sick and didn’t get better. After seeing a wide variety of specialists who conducted a full battery of blood tests and imaging, many diagnoses were ruled out but nothing was ruled in. She continued to experience a broad spectrum of symptoms including gastrointestinal distress, abdominal pain, debilitating fatigue, headaches, muscle weakness and nerve pain.

On August 10th she needed help walking and by August 26 she needed a wheelchair. She remains in one to this day, 2 ½ years later. Over the years, she has received a few diagnoses, but the primary culprits seem to be Ehlers Danlos Syndrome, craniocervical instability, dysautonomia and Myalgic Encephalomyelitis.

Through careful management of her symptoms, Ann-Britt is able to continue to pursue her love of singing and drawing as a welcome escape from a primarily homebound life.

Check out her website.

Marion Michell: Marjojo from The Marigold Squad

Marion is an exceedingly talented artist and writer who is part of the #Bedfest group I mentioned earlier. Her words and creations are always so beautiful and touching. And majestic. And a lot of other complimentary adjectives I can’t think of right now. I always look forward to seeing her posts.

The art I am sharing today is from what she calls The Marigold Squad, small rag dolls wearing multicoloured super hero(ine) capes. She created five in total, each of them with a different story and different disability. Their slogan is ‘We respect and learn!’, and they are all about love and acceptance.

I am grateful she gave me permission to include her photograph of her art, and what she wrote about the project.

In Marion’s words:

As Marjojo (pronoun she/her), the fourth member of the Marigold Squad, has #MyalgicE and spends most of the day lying down, we have given her a bed on rolls. All she needs now is a remote control. M., also called The Great Dropper as things keep falling out of her hands, wonders about super powers. Do resilience and brief spurts of creativity count?

We’ve taken care to assemble her from cherished elements:

Hair – cut from wool socks (Xmas present by Meryl, my sparkle-hearted carer) which had shrunk in the wash. I wish my own mop were as stylish!

Legs – made from a tote bag I’ve never had occasion to carry. True to life they are too long for the bed.

Super heroine cape – sewn from sloth fabric, previously used for Siddhling’s pyjama pockets. (dSavannah note: Siddhling is another member of the The Marigold Squad.)

Culottes – from a certain leopard onesie.

Eye mask – a tiny piece cut from a friend’s mother’s apron.

Wristband – a ring given to me by one of mum’s neighbours at the old house.

Wheels – four coasters (it’s not like I’m expecting visitors for boozy dinners; by the time evening falls I’m so fatigued even desire for company is blotted out).

Headboard – decorated with Japanese Origami paper, a gift from Lilan Patri. As in real life, the bed’s head end is elevated to help with POTS (Postural Orthostatic Tachycardia Syndrome).

Blanket – a felted scarf made by Anna Arianova.

Stick – knitting needle, and a hag stone Miriam Mica brought me from a beach.

Image description (seen from above) – a small fabric doll – wearing an orange top (with a pale blue Black Lives Matter badge) and leopard print culottes over black&white striped curved legs – lies on a red blanket on top of a cardboard bed. She has a pink face and grey/burgundy woollen hair. The green/blue sloth fabric the super heroine cape is made from is just about visible on her sides. An eye-mask and head phones hang from the colourful headboard.

About Marion:

Marion Michell is a London-based visual artist, blogger, writer. She has severe M.E. and P.O.T.S., and creates with fervour, but at a painfully slow pace, and often in the supine.

In December 2016, her book of poetic prose, SUPINELY SUBLIMELY, was published by Palewell Press (purchase on Bookshop or Amazon [affiliate links]).

Find Marion:

• Her Website
• Twitter
• Instagram
• ChronicJots blog
• supinesublime blog

April Thompson & Chronic Market

When April got the idea for Chronic Market, she asked me if I would participate. Although I still have lots of art for sale (jewelry, scarves, photographs, and paintings), and shut down my online stores quite a long time ago, I have no idea what I have left. I also don’t have the energy to inventory it all and find photos and descriptions. But I am grateful that April created the Chronic Market: some day I might have that energy, and you’ll see some of my work on there.

In April’s words:

I’m April Thompson, the founder of the Chronic Market, a platform for artists and artisans disabled by ME/CFS to sell their work, share their stories, network, generate awareness, and raise funds for research.

So many people with ME/CFS turn to artistic forms of expression to channel creative energy and bring awareness to our condition, in addition to it being a flexible way to earn some income for those forced out of traditional forms of work.

Like the artists in the Chronic Market, I suffer from ME/CFS, which I developed 15 years ago. I was in peak health and physical conditioning, a multi-sport athlete who had run marathons, boxed competitively, and climbed mountains all over the world. A cold/flu virus lingered and left me so weak I couldn’t make it around the block, though just days earlier I’d been able to run miles on end. It has waxed and waned over the years, but I never fully regained my functioning.

I am blessed to still work a full-time job, but as with all of us, a small bout of physical exertion is enough to potentially make me ill for days.

Our project is run 100% on a volunteer basis, with a minimal percent taken from each sale to cover operating costs, with the remainder going to the creator/vendor. Once operating costs are covered, an additional 5% will be donated to the Open Medicine Foundation, which conducts critical research from private funding on ME/CFS.

Beyond aggregating the beautiful art and wares of our community, we hold virtual workshops, do virtual art demos and other activities to share the talent of our community.

For ME/CFS Awareness Day this year, we launched a Creative Challenge, which has already garnered participation from 11 countries. We asked people to create a visual with a response to the prompt, “What would you do if you were well tomorrow?” and take a photo of themselves holding it. We also paired severely ill participants who were unable to create their own sign with healthy artists, who created a visual for them, in an effort to be more inclusive and spread awareness beyond the borders of our community.

A slideshow with all the submissions will be launched on May 12, so follow us on Instagram, Facebook, or join our mailing list to see the final result.

dSavannah update, 5/11: The video is ready! Check it out on Youtube – 0ver 30 artists with ME/CFS from 13 countries contributed imagery and a phrase responding to the prompt.

I am just a hobbyist / mixed media artist and play around with drawing, collage, encaustic, watercolor (examples above)… I am filling the pages of an old Hardy Boys mystery right now with mini works.

The artists in the Chronic Market, on the other hand, are working at a much more sophisticated level! All items are for sale on our website! We have items for as little as $1, so even people on a limited budget can support these artists with ME/CFS. I’m quite proud of them and this little community that we’ve created and continue to build.

A composite photo of some of their pieces/wares:

Top, left to right: Terapia de Hilos, Uncut Creations, Ashley Bravin
Middle, L to R: Boy Pilot Goods, CM Gouin, Hand-Stamped By Anne
Bottom L to R: Terra Arts, Mulberry Muse, Words as Medicine

Thank you so much to these artists for letting me share their work! There are so many more, and I hope you take the time to search them out.

Come back tomorrow for a guest post from another MEcfs patient, who originally shared her story for MECFS Advocacy Day 2021.

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