I completed my largest embroidery to date—the wandering ghost—in June. The stitched area is 53 x 21 cm (21 x 8.5 inches).
Clean up took a lot more time than usual because the chalk pencil I used was especially stubborn to wash out of the cotton and I wanted to wet block instead of iron it which took a bit of figuring out since that’s a new process for me. But it is done! Aside from cleanup I worked on it from June 14, 2023 to June 12, 2024. An entire year.
I’ve been participating in SciArt September for a few years now. Glendon Mellow and Liz Butler came up with some excellent prompts yet again this year, each week on a different theme: horror, sci-fi, fantasy, folklore, and the end. I shared older work based on all the daily prompts.
My interview on the Arts Ably podcast is up! Diane and I talked about how my artistic practices in music, writing, and embroidery shift with my ME/CFS and disability.
In April I started a 12-week writing intensive called The Visceral Self with Jeannine Ouellette of Writing in the Dark over on Substack. This intensive was a bit more intense than I anticipated and made me realize that I really need to do things at my own speed. I started off participating fully but had trouble keeping up with the extra reading, and then participating in the comment section fell by the wayside, then I had an infection that meant writing and reading weren’t possible at all for a couple weeks so I had to accept that just doing the main exercises on my own time was all I could manage. I felt that I was missing out by posting things late and not really participating in the comments, but my disability means I have to choose what works for me both physically and cognitively.
A couple months ago I had the honour of being interviewed by Daniel Moore for the podcast Post-Exertional Mayonnaise. The name of the podcast is a play on Post-Exertional Malaise (PEM), the hallmark symptom of ME/CFS.
Daniel and I had a wide-ranging discussion and talked about whether its possible to flourish whilst living with ME, making art with a disability, flow states, symptomatology, meditation, and Stoicism.
I’m excited to announce that I’m a featured artist in Opera Mariposa’s 2024 Benefit + Awareness Month! 🦋 I’m honoured to share both art and music to support the ME | FM Society of BC and raise awareness for those affected by ME/CFS, Long Covid, and Fibromyalgia. Join me for this all-online charity extravaganza at Benefit.OperaMariposa.com from May 1 – June 1, 2024. There’s music, art, over $3,500 in prizes and more – and it’s all for a great cause!
Collage by Christina Baltais. Design by Stephanie Ko
I’m involved in the benefit in a few ways. Read on for how my music and embroidery are being featured!
I have completed The Hum—a piece of music based on my hyperacusis and tinnitus symptoms. It’s just over 11 minutes long, and is a calm, ambient, and somewhat minimalist piece. Here is a 1 minute, 20 second taste of the recording:
It’s been a challenging three months. Winter is always hard on my system and I’ve been getting all my vaccines up to date which has required a fair bit of recovery time. I also found out my cyborg part (an iliac vein stent) needs an adjustment so I’m waiting for a date for day surgery. But, because creative work is what makes me flourish, I’ve done a surprising amount of work in that time.
In December I realized that my routines weren’t working well and were causing me a lot of unnecessary internal urgency so I totally scrapped them and rebuilt them from scratch. It took about a month of trial and error but I now have routines that work so much better for where I’m at cognitively, physically, and with my current projects. My music work is a bit more spaced out now, as is my journaling, but the internal striving and pressure I felt with my old routines is gone.
I do think the impetus for such a large shift is due to my continuing research on the vagus nerve and polyvagal theory. Urgency activates the sympathetic (stress, fight, flight) system, and reducing that means I can come back to ventral vagal (calm and engaged) much more readily which is very good for my entire system.
Note: This has been cross-posted on ko-fi and on Medium.
2023 was a very full year with a few big projects done in tandem with other organizations. It was also the year that I finally felt I had a career again for the first time since the 2015 onset of ME/CFS. Here are some of my plans for this coming year, with the caveat that they are all fate-permitting since I never know what my body might do.
Works in Progress
I have three main practices—embroidery, music, and writing—and have ongoing projects in each. My main embroidery project is a very large vagus nerve piece, my main music project is a composition/recording titled The Hum, and my main writing project is writing poems based on my notes from Deb Dana’s polyvagal theory audio course.
Note: This has been cross-posted on my ko-fi. There are a few other monthly updates there if you would like to read back a few months.
Webinar Report
Another monthly-ish update and another very full month. The main creative work on my plate was teaching a webinar for CHASE Medical Humanities about the visualization process I use to create my symptomatology pieces as well as how to use the poetic technique of homophonic translation to re-vision and re-own dense scientific texts.
It felt good to stretch my teaching muscles again. I’ve been teaching in some capacity since my late teens—music, yoga, and meditation—but had to stop when I got sick in 2015. Despite an ME/CFS crash the day before, I was well enough to present my webinar and the participants seemed to enjoy and get a lot out of the work. A few people even shared their symptomatology image/test pieces on social media. Here are a few:
Gillian Blekkenhorst started with a trachea and expanded their piece from there.
