Tag Archives: mecfs

I’m on the PEM Podcast!

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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.

You can also listen on your favourite podcast platform via the PEM Podcast webpage.

The Hum

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The album cover for The Hum. It reads: The Hum. Lia Pas. The image is of Lia's embroidery, "sensorium" with a purple navy tinge and dark purple navy bars on either side. In the centre of some bone white linen, there is a spine in thick satin stitch. Emanating from the spine are thick burgundy lines in an undulant oval shape. This oval is bisected across the middle. In the top half, there is a section outlined in burgundy filled with coiling blue lines and a similar section in the bottom half. The rest of the undulant oval is filled with fine coiling burgundy lines. The spine is very straight, the rest of the embroidery is very coiled and busy. Lia’s initials are stitched in fine thread the same colour as the cloth at the bottom right.

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:

You can buy the entire 11 minute recording on my Ko-fi page as an mp3.

Read on for more information about my long and gentle music reintegration and composition process for this piece.

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Monthlyish Update: Getting Guts in Order (late Sept to early Nov)

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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:

crayon drawing of a body with photocopied esophagus, awkward poem and a bunch of triangles

Gillian Blekkenhorst started with a trachea and expanded their piece from there.

website: https://blekkenhorst.ca/

Twitter: @gblekkenhorst

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SciArt September 2023

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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!

Banner for the Sci Art September art challenge. The banner features a sketch of a mantis shrimp, as an example of art to create during the event. It also features the following text: Hashtag Sci Art September. Month-long art challenge. Following that is the 30-word prompt list, included here: 1 Starry, 2 Battle, 3 Favourite, 4 Cold-Blooded, 5 Strangling, 6 Understory, 7 Indigo, 8 Simian, 9 Heart, 10 Gossamer, 11 Lyrical, 12 Overgrowth, 13 Carmine, 14 Glowing, 15 Bird-like, 16 Ochre, 17 Abstract, 18 Talon, 19 Charcoal, 20 Sweet, 21 Misty, 22 Nocturnal, 23 Adornment, 24 Metallic, 25 Alchemical, 26 Threads, 27 Amethyst, 28 Monumental, 29 Tale, 30 Rebirth. After the list is the following text: Hosted by @FlyingTrilobite and @LizLagomorph. Year 3, September 2023.
An embroidery on ochre linen, there is the outline of a head and outstretched arms. Tiny blue filigree decorates the face and hands and there are light coloured stars on the chest area and around the neck.

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.

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tethered by fluid and ligaments (2023) 

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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. 

A red & purple organza liver basted onto grey linen. The biliary system with all its branches between the two layers of organza is filled with a bilious green. There are small yellow beads on the biliary system inside the smaller lobe. There are white beads sewn on the narrow end of the top organza liver. An arched T shape filled with tight crisscrossing stitches in thick off-white thread separates the large & small lobes of the liver and curves over the top. There are various blocks of text stitched in light grey single strand thread around the image.They read: What roots grow in us. Branch through our landscapes. In love plexuses. a curvature borne. between what is held & what must be held carefully. fleshy beasts tethered. By fluid and ligaments. Such a gentle embrace. Beneath our skin. Here is the thing I broke & then repaired with brightness. Laid open. The spells it holds. A language spoken. Between boughs & flesh. this golden ingot. This tailed beast. And its viscous song. What a miracle these spaces within us. Are what make us whole. What offertory our bodies. The proper invocation of flesh. Placed on the ground. Hosts on tongues. Fleshy language. Each thing precious in its own decay.

Unlike some of my previous symptomatology pieces, my liver issues haven’t been resolved during the stitching of this piece. . . .

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Opera Mariposa 2023 Benefit & Awareness Month

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I’m so excited to be taking part in Opera Mariposa’s 2023 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!

Against a gauzy blue background, Jacqueline Ko spins in a sea blue chiffon gown, her long black hair flowing, haloed in rays of light. Next to logos of Opera Mariposa and the ME FM Society of BC, white text reads, Opera Mariposa's 2023 Benefit + Awareness Month. May 1 - June 1. Benefit.OperaMariposa.com.

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.

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The Body Electric 2021 & 2022

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My work was once again selected to appear in The Body Electric—an annual health and humanities exhibit that is part of the International Conference on Residency Education (ICRE).

Initially launched during the 2014 International Conference, The Body Electric uses art as a way to critically engage with medicine and healthcare. The Body Electric annual digital art exhibit showcases an inspiring selection of visual art, in a range of media, including photography, drawing, painting, sculpture and video.  

from The Body Electric website

One of this year’s themes was Art as Coping so I submitted three of my paresthesia symptomatology pieces:

On bone white linen, there is the faint outline of a hand, fingers apart. The hand is filled with thick dark blue lines intertwining and crossing over. There are finer thin lines in bone white beneath the thick blue lines. At the wrist, the thick blue lines end in strands of thick thread, hanging over the edge of the linen.
paresthesia (hand 1) – 2016
On black linen there is the outline of an open mouth with the tongue sticking out. The lips are outlined in a dark pink, the tongue in a paler pink, and the teeth in bone white. There are sections outlined on the tongue in thick blue lines. The tip and sides of the tongue are covered in tiny red, orange and white dots. In the center of the tongue there is an hourglass shape made of tiny pink dots. There are taut lines of thin dark blue thread stretched from the tip of the tongue to the sides, from the sides of the tongue to the lips and palate, and from the palate to the tip of the tongue.
paresthesia (tongue 2) – 2018
An embroidery on deep purple linen. There is a purple outline of a feminine right hand from the side, palm up, fingers curled slightly inward. There are many tiny white French knots covering the fingertips and light blue, gold, and navy French knots on parts of the palm. There are fine filigree lines connecting many of the French knots and white strands of thread strung from each fingertip to an apex above the hand. There is a starburst floating above the palm in white and light blue.
push, pull & tingle (2018)
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