ME/CFS Project
So it has been a while since I’ve posted. We’ve all had that year with covid. I’ve continued to make new Identity Tapestries (for shows that are now postponed) and a few light paintings, but other new art has stalled… until last night.
I had an idea for a piece which has been slowly percolating its way through my brain for a while now and suddenly gained shape. I have been struggling with how to talk about ME/CFS (a condition that has caused me to be in a wheelchair for the past 4 years) in my artwork.
What has struck me is the power of the social media posts of fellow ME/CFS sufferers as a window into our lives. I have decided to create a work using these (anonymous and always with permission) together in one piece, possibly also with photo images. The text will be embroidered onto hand dyed fabric panels in various shades of blue. The photos if I decide to use them would be rendered into blue dye on fabric using photo-reactive dye. This will make the images a little less recognizable as specific people, but hopefully the sense of exhaustion they feel and their humanity will come across. If the images don’t work the way I want, I will stick to the text.
I think the anonymous raw, un-edited social media posts of severe ME/CFS suffers would provide a very specific, candid window into our lives. So many of us only show our best selves in public (if we have the luxury of being able to leave our beds) and even our friends and family don’t see how we suffer. The raw posts- with all the typos and things intact also show our mental state as it is.
ME/CFS is a terribly debilitating condition affecting a CDC estimated 2.5 million (likely more now since covid and “long covid”). Many experts think the parts of long covid that are not direct physical scarring or results of blood clots are actual cases of ME/CFS. It can happen after any viral infection. I got it four years ago as a result of a different virus and now need a reclining wheelchair to leave the home. Those who have the most mild cases can still work and walk, they just feel exhausted or flu-like all the time. Those who suffer most among us need stomach tubes, catheters, and total sensory deprivation (dark rooms, noise canceling headphones, etc.) so as not to overload our senses. I was pretty severe, but now am moderately severe thanks to careful pacing and many medications and supplements. Where I used to only be able to sit upright for 15 min, I can now do it for up to 2 hours, which allowed me to paint and sew again.
I want to tell our stories. I want to make this pain visible to people through my art, and I think I found the right way to do it.
If you have ME/CFS and you have a social media post you would like me to include you can alert me at contact@marymarch.com Ditto a headshot of a moment that really shows you struggling. Otherwise I will be finding them myself and asking permission.
If and when I ever sell this piece any profits above materials costs will go to Solve ME.
Studio in the Time of Covid
Moroccan Desert from Mary March on Vimeo.
Creatives with materials have a bit of an edge in this isolation situation- while we may miss some things we bring our own world with us. Also, my CFS/ME disability has taught me to appreciate the little things like my life depends on it, and this has served me well in these strange times. In a way I am treasuring this time of focus.
While my house/studio is under construction (delayed now of course) I have been using the garage in our temporary house, not to mention exploding my Identity Tapestry yarn and other things around the house as usual. I’m lucky the space works for me. I am also profoundly lucky in my husband and kiddo. We’ve all done very well together the past six weeks, despite being under the strictest possible isolation since I’m immune compromised.
I’ve been busy delving into the new series of encaustic paintings using dynamically programmed LEDs in collaboration with programmer Mark Kreigsman. The first piece was “Beneath these waves lies light”. The second in the series (shown) is based on the Moroccan desert, and ones based on light through leaves and the northern lights are in in the final stage of programming. Thankfully I got materials for another six after that before the stores closed down.
These are especially interesting and challenging. Rather than just the surface of the paint, or even light bouncing through layers of paint, now I have to get each stroke right from the base upwards. The light coming through the piece shows every mark. Also, different pigments filter light different ways, perhaps reflecting yellow but filtering orange, so in low light it looks orange and in bright light yellow. I have scraped off and repainted the last three two/three times each as I work through the unique properties of each set of pigments and work for just the right texture. Another step is finding the correct colors of light to program by their RGB numbers and seeing how they play through the paint, trying and tweaking, shifting combinations. I paint in different lighting conditions over the first pass of basic light programming I can do myself, while tuning both the paint and light colors. Then I work with Mark to get much more sophisticated layers of motion and mapping correct for the feel and goal of the painting.
These are incredibly engaging and fascinating for me despite their seeming simplicity and I haven’t seen anyone else do anything like them. One thing though, they are very tricky to faithfully photograph or video and look significantly better in person.
In the meantime we’ve been locked down like everyone. I was working on a new Identity Tapestry installation as well until that show got postponed. I do what I can with the remaining energy I have to make masks which the lovely folks at Dames Do Care (ladies on motorcycles) deliver to places that need them. Now with the 3D printer free of Identity Tapestry stuff I can put the it to use on other PPE, which is gratifying. We use our skills to do what we can in these strange and disturbing times.
Shows everywhere are understandably being canceled and postponed. My upcoming installation at the Palo Alto Art Center is being postponed for a new show at a later date, with the June show canceled. Another event out of state with an installation piece has been canceled, and there were two larger profile shows that were meant to be in China this fall, but are also likely to be canceled or postponed. I absolutely don’t begrudge this and want people to stay safe and healthy. I just hope our wonderful art institutions weather this storm with all the support we can give them.
New Light
Dan’s passing has had a huge effect on me, and I have been grieving. But he has once again brought some light into my life. I wanted to do a tribute piece to him, and kept thinking about light under and on water. I spoke with Mark Kriegsman, his dear friend and co-creator of FASTLED and he had been thinking along the same lines and was already beginning a program designed to feel like water.
I hadn’t been well enough since the CFS/ME to sit up long enough to paint, but I was planning to try out encaustics for ages (even before getting sick). With some new medication I have been better enough to start painting again, and so I created this piece.
It is encaustic paint on plexiglass with a special program Mark and I worked out together on the FASTLED platform which moves and shifts and changes colors like light under deep water (the video shows it best).
Dan died in the water, but he was also on the dive boat because he loved the water so much. He brought light to so many and it seemed a fitting tribute to make a work that felt like light under water. Beneath These Waves Lies Light was the result.
I feel electrified. I want to make more. I have other moments of beautiful light that I want to capture in a semi-abstract way. I am starting a whole new series. This is his last gift to me- the inspiration to make new art.
I’ve lost my dear friend and collaborator
taken by John Adams at my wedding in 2007
Today I am reeling from a terrible loss. My friend and collaborator, Dan Garcia was one of those lost on the Conception diving boat this labor day weekend. He and his partner Yulia were among my nearest and dearest friends for the past twenty years.
Since this is my art blog I will tell you especially about Dan, my most frequent and closest collaborator. Dan documented and helped with so much of my work over the years. He was incredible to brainstorm anything with, but his specialties were photography and tech. In particular he collaborated with me on Cultural Fabric Breathes Still and Access by working with me to design the tech aspects, and building the code and hardware to make the artworks happen. There are other people I have collaborated on tech with, but he and I made fireworks when we worked.
He was himself a talented photographer and light sculpture artist- making the movement and shifting of LED lighting look more organic and natural than anything I’ve seen. He created an open source LED lighting platform (FAST LED) that anyone can use- from Disney and Cirque du Soleil , Artists, Burning Man projects, to everyday hobbyists.
He was so passionate about art, especially interactive art. So passionate about supporting art and making it happen. He worked on various Burning Man projects including Syzygryd, which was an interactive sound, light and fire piece he did with Ardent Artists (formerly Interpretive Arson and Ardent Heavy Industries). He was just that person always looking to see how he could help, and his enthusiasm and smile were infectious. For his professional career, he was a masterful programmer and code ninja, and he worked with my husband, following him to two different companies so they could work together. The two of them were also a fantastic team.
For the last two years he was recovering from the loss of another dear friend, and had only just been starting to do art again beginning with Access a few months ago. Last weekend I was over for dinner and he showed me the first art piece he had made on his own since her death. He told me working with me helped him break through to making art again. It’s hard to imagine never working together again.
It’s hard to believe he’s gone. He and Yulia were the sort of people who touch and light up so many lives, who welcomed and supported such a large community. We are all absolutely shattered by this.
Another reminder to appreciate the people you love, not put off brilliant ideas for building things together for some future date, and to make time for those extra moments with them.
Syzygryd (taken by me in 2010)
Installing at MOT (Museum of Contemporary Art, Tokyo)
The unsung heroes of the art world include museum installation staff. They are often accomplished artists in their own right, and with large projects like these, they are indispensable. MOT‘s team was fantastic. We had a few hiccups (one of which was that humidity in Japan caused my print to wrinkle), but they are saving the day and making my work look its best.
I cannot tell you how great it is to have such careful, dedicated, clever folks to entrust my work to.
Throughout everything the exhibition curator Kasumi and another curator, Uta (who is assisting me with translation and helping me personally) have been amazing in helping me create my vision in their space. The museum space itself is amazing. I only wish I’d had more lead time to do even more (especially with all that vertical space!!!) I can’t wait to see everything after participation!
On a more personal note, one of the many new medications for CFS/ME that I am using is helping tremendously with my energy levels and recovery rates. This meant I was able to do this install so much more easily and made this trip so much better.
Nearly ready to fly!
This most recent stretch has been all about finishing up Identity Tapestry and Messages from Tokyo for the show at MOT (the Museum of Contemporary Art, Tokyo).
It’s also been absolutely fascinating working with Kasumi Yamaki, the curator at MOT to edit my statements to make them Tokyo-specific, and to be sure the nuances make it across in translation. There are so many things unique and important to Japan and Japanese that don’t translate easily into English. My favorite is “air”. “Reading air” is interpreting the unspoken desires or rules or dislikes of a person or workplace or situation. “Breaking air” is chasing to go against that (say if work officially ends at 5, but the “air” expectation is that you stay until 8, but you chose to go home at 5).
Then there are things that don’t translate into Japanese, like “faith”. The concepts of belief and trust, yes, but “faith” is trust or faith without proof. It doesn’t have to be religious. You can have faith in a stranger’s good behavior (while you have trust based on experience in the behavior of a friend). There is no Japanese equivalent, so if I want to include it we have to come up with a phrase that describes it.
My studio assistants have been fantastic: winding yarn, being my hands while I direct dyeing paper and yarn, ironing the paper and sewing thread through it, assembling the posts, filling in the laser-etching in black… they really have been great.
Some things I still need to do all by myself. The most obvious thing this time was sculpting the basket. In previous pieces this has been made of heat-moldable plastic. This time though, the yarn will be in a nest/cradle on the floor and it is made of chiffon sculpted with draping fluid. I love how this came out, and it looks great with light behind it, which makes me want to experiment with this material more.
I even managed to figure out how to take everything in our allotted checked and carry-on baggage: 300ish rocks wound in yarn, 1200 pieces of paper, 240 posts, 240 statements, (221 to be used, plus extras), maps measuring 5 feet by 9 feet and the same dimensions for hardware cloth, ph neutral glue (huge container), acrylic bonding solution, tools, paint, draping fluid and extra fabric, and that huge fabric basket. The maps are in a protected tube with the hardware cloth wrapped around it secured in a ski bag! It worked!
My last task is making the paper guide for where the statements are placed while my assistants finish taking stickers off the laser-etched statements and fill in the text with black. Nearly there!
So excited to get to Japan and install these next week!
My kitty has been “helping” all along.
Knee Deep in Rainbows
I’ve been busy.
- Finished correct size (not yet glued down)
- Internals for the Access card reader box
Access is nearly ready for action, thanks to the programing and hardware design of my friend and collaborator Daniel Garcia and the help of my three lovely studio assistants who have been sanding away at the 60+ boxes I printed on the 3D printer.
Access will have its first run of interaction at Intel’s conference in Portland, Oregon this May, where I will also be presenting a talk on intersections and empathy.
The piece involves a series of statements about Access with “Yes” and “No” buttons with card readers to log responses. The statements cover all kinds of access based on education, physicality, finances, background, race, gender, age, sexual orientation, culture, social elements, etc. Like Identity Tapestry, specific statements are selected and phrased to focus on the _intersections_ so that one statement may cover different kinds of people’s specific access challenges.
Each visitor will have an access card (image below) to use in including their own access story into the piece. I made these softer and more tactile with an eye to giving them the approachability, uniqueness and comfort people find in my yarn to set against the more impersonal electronic devices. The color of the card will determine the color shown in the data visualizations for the piece. They go from statement to statement, scan their card, and then select “Yes” or “No” for each of the sixty statements.
In this first iteration, the data visualizations will be on large monitors on either side of the piece, but future iterations will likely use project mapping or combinations of screens and projection mapping. I have the advantage of knowing the specific group for this particular piece in advance and knowing everyone should have no trouble accessing the piece. In future more public interactions though, the goal is to make the piece accessible to participants who do not speak English, or who are blind or wheelchair bound. The fonts were already selected based on being better for those with dyslexia.
In the meantime I am working on a very special (and HUGE) version of Identity Tapestry which will include maps for the Museum of Contemporary Art, Tokyo (MOT). The show (Wandering, Mapping) will open on August 4th and run until October 20th, 2019. The piece will also feature a companion wall of responses on local, Tokyo paper I have hand-dyed alongside the yarn.
My studio helpers have been my hands through much of the dyeing process, and all of the measuring and winding and they’ve been wonderful. I am looking forward to seeing everything up and installed!
Transitions- continuing my art through illness
The corner of my empty studio
Since becoming sick with ME/CFS, I have had a lot to contend with and it has changed my practice. I have limited energy, and I have to spend it wisely. I have only minutes at a time of standing, walking, holding my head upright, etc. before I need to take a rest. Then again, my practice changed a great deal when I became pregnant, and it turned out to be the best thing that ever happened to my art (I did the first Identity Tapestry while pregnant and it brought me into Installation). The main effect is that I have to pace myself, and think through everything many times before I make the effort of _making_. I suspect it will generate more thoughtful new work. I also have new reserves of patience, and new understanding to feed my empathy.
Right before I got sick I had come to an inflection point in my work where I knew I would have to start hiring assistants to complete large projects, but I was dragging my feet. For those not familiar with how art at a certain scale of production goes, this is pretty normal and has a long history reaching back to the studios of the famous Renaissance painters and before. Even without being sick, I needed to accept that I now needed assistants.
For the three shows I did in the first year of my illness, I relied on the help of an awesome network of friends and my husband (who even learned how to dye wool!) to help me do my work. They were my hands. They got me through the installations at the Contemporary Jewish Museum, The San Jose Museum of Quilts and Textiles and at the Marjory Barrack Museum. Initially it was hard to conceive of hiring strangers to come into my home in the vulnerable state I was in, given that I had already resisted it before. I wasn’t ready then.
At the same time I became sick, we realized we had to do major repairs to the foundation of our house, and it became a huge remodel complete with moving out. After I did the museum shows that year, I buckled down to the task of packing and purging the house… again with the help of my amazing friends. My outside studio space was unreachable for me (and not wheelchair accessible even if I had the energy to work after driving there and parking) and essentially became expensive storage while I hoped I got better. I turned down some shows and applied to nothing while I used all my energy to move house.
Today I am a little better overall. The house is moved into a temporary space, and I finally let go of my studio of 14 years. The new studio and shop space I will have in our house will be an absolute dream though, and I can’t wait. In the meantime, I have use of our temporary garage and have set up the studio there, complete with a chair that supports my neck and torso so I can sit up longer.
Now that I have the moving hurdle done, I am back to exciting new projects! This spring I will be doing a new participatory installation that I have been thinking about since 2014 and am super excited about: Access. There is also another installation in another country coming up in the summer which I can’t wait to do. Details will follow when everything is confirmed, dried and dusted.
In the meantime, it’s time to take the leap and hire some assistants. Whatever my condition, my work will continue.
Las Vegas Humanities Salon and new Website
Tomorrow night I will be at the Marjorie Barrick Museum in Las Vegas for a salon. Information here, flyer below.
I am also happy to say that my website has undergone a complete re-write, with new content and more coming.
In particular I hope you take a look at the sound installations Cultural Fabric Breathes Still and Urban Pulse: SF, which now have the full sound elements incorporated into the website. Other pieces like #DadaTaroT and Between the Lines have more content, with more coming soon to other works like Write Me for Art.
I have a lot of non-art on my plate for the next few months with both moving house and moving my studio space to one more accessible by wheelchair, but in spite of the chaos I’m still working on a new large scale interactive piece.
Identity Tapestry at the Marjorie Barrick Museum
I am pleased to announce that The Marjorie Barrick Museum in Las Vegas has commissioned Identity Tapestry #12 as part of a community initiative in Healing Through Art in the wake of the shooting there. It will be on display in the West Gallery from February 2 – May 12, 2018. From there it becomes part of the permanent collection.
I will also be speaking in an artist panel on “Art with Social Purpose” hosted by Nevada Humanities on May 4th, 7PM at The Writers Block in downtown Las Vegas.
I have been happy to prove to myself, with this third installation in a museum since I became so ill with CFS/ME that I am now in a specialized wheelchair outside the house, that I can still work productively as an artist. This has been thanks to the support of friends, family and assistants.
Almost ten years ago now my process and my work went through a serious change with pregnancy and the birth of my daughter. There were “limitations” that made me use different materials and ways of working, and they prompted the shift to Particaptory Installation. That work has lifted my art and my career as an artist.
This is another shift, and it is already teaching me a lot that I can put into my work and practice. I fully expect it will continue to lift my work.
From the Studio 