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.
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.
I’m teaching a free webinar with CHASE Medical Humanities in the UK on Thursday, 26 October 2023, 5:30pm UK time, 10:30 am SK time. I’ll be leading participants through my process for creating both the visual and textual aspects of my symptomatology pieces. I’m very excited about it!
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, and I shared older work based on the prompts. Below are all 30 days of my posts!
Day 1: starry
stars within, stars without (2017) is part of my symptomatology embroidery series. This is a map of the paresthesias (tingling) in my upper body due to ME/CFS, stitched as I experienced them.
The date of the official launch of Sharp Notions: Essays on the Stitching Life, approaches! It’s out on October 10th, but you can preorder it now. Pre-ordering has become very important in publishing, so doing so will help the longevity and success of the book.
I’m so excited to be taking part in Opera Mariposa’s2023 Benefit + Awareness Month🦋 I’m joining them as a featured artist in their online art showcase, as well as having some of my artwork appearing in their charity prize draw!
This entire charity fundraiser runs May 1-June 1 at Benefit.OperaMariposa.com, and features music, videos, art, merchandise, nearly $5,000 in prizes and more! It’s all in support of the ME/FM Society of BC and the rising number of people impacted by Myalgic Encephalomyelitis (ME), Fibromyalgia (FM) and Long Covid. There are free and by-donation ways to take part—plus, donations will be TRIPLED up to $3,500, so your support has three times the impact! I hope you’ll check it out, and join me in support of the chronic illness community.