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.
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!
This webinar is open to all, not just people in CHASE institutions. For the institution question in the registration I usually put n/a, and my position as independent artist.
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 have completed my liver embroidery. It’s another large piece, H 15″ x W 21″ (38 × 53 cm). I stitched it from 20 June 2022 to 5 June 2023. I’ve titled it tethered by fluid and ligaments.
Unlike some of my previous symptomatology pieces, my liver issues haven’t been resolved during the stitching of this piece. . . .
The cover for the forthcoming anthology, Sharp Notions: Writing From The Stitching Life, was revealed in February, and it features my embroidery, she breathed!