The Willow's Work

06/12/2025

My migraine was returning even after a trip to the ER for IV migraine meds. .tedesco brought her migraine tools over and they blew me away! This is the Head A Term 2 and it worked for me! For me, while it was running I had zero (0) migraine pain.

23/05/2025

reminded me of this key learning: there are so many factors that affect how you might experience your meds.

What kinds of factors might influence how effective your meds feel lately?

ID: Title text reads, "Why your meds might seem to be working inconsistently" with three lines below. The lines show that your meds are generally stable, but your life and hormones are less stable, indicating that your life and hormones may impact how you experience your meds. Small text at the bottom reads, "Talk to your doctor or pharmacist if your medication is consistently ineffective, or if inconsistent meds impact your ability to live your life."

09/08/2024

HEAR ABOUT THE THEORY BEHIND THE WILLOWS WORK IN 37 MINUTES. A little while ago I sat down with to talk about disability and Filipinos in social work.

I went to social work school in part to figure out what felt so wrong about Western medical systems- and I found my answers in healthism, whyte supremacy, colonization, and capitalism through the lens of anti-oppressive practice and structuralism (with a dash of post-modernism.) I also introduce a concept I've been thinking about to make structural oppression both more visible and more actionable- I'm calling it micro-structuralism for now. (Get it? It's structuralism but it's micro. I think that's low-key hilarious.)

This was a fun episode to prep for. I moved from academia-adjacent, to direct service practice, to textile arts very quickly. And while I don't think I ever would have pursued a PhD (even if I'd been non-disabled) I love getting to chew on tools that help me understand my world better.

Image description: The podcast episode image for “Tayo Na! Social & Community Work Perspectives” shows Kaia, a mid-30s Filipina sitting sideways across her electric wheelchair. The episode is part of the “Special Series: Filipino Community Organizing” and is titled, “Dis-abling Structures of Social Work” with Kaia Arrow.

08/08/2024

I'll be reading poetry next Thursday (including a few unpublished pieces) for the next installment of Who's Afraid: Disability Justice edition!

The event is online and all tickets are Pay What You Can. See you there!

A reading series exploring fear, what we are afraid of, and where that comes from. This time the theme surrounds Disability Justice.

12/07/2024

Alyssa Erin created this NaCl twist on the POTs Challenge!

Image Description 1/4: A title page asking, "What is it like to have POTs? Try the POTs Challenge! Sodium edition" with a little animated scale swinging from green to red.

2/4: Four basic facts about POTs. Postural Orthostatic Tachycardia Syndrome (POTs) is a form of dysautonomia where someone’s heart rate shoots up suddenly when they change positions, usually from standing up. POTs makes everything significantly more tiring, because your body is working much harder to do standard things. It’s categorized as a “dysautonomia” because there is no issue with the heart, the issue is actually with the autonomic nervous system. One management strategy is to increase blood volume via high sodium diet and hydration (the Canadian Cardiovascular Society position statement on POTS recommends 10g NaCl [~5g overall sodium] and 3-4L of water daily)

3/4: "POTS Challenge: Try It! For able-bodied people with no heart issues only." and then the instructions, "Measure your sodium intake for one day. Use the sodium content on food labels and search online for estimates for unlabeled food. Use a kitchen scale for more precise measuring. Increase your sodium intake to 3g for one day. Remember to drink 2-3L of water as well! Note the challenges you encounter. How often during the day did you have to think about it? Were you able to meet the 3g sodium goal? What about any emotional load? What challenges might you encounter over one week? One month? Years? Consider cost, time, energy/effort, juggling other responsibilities & needs." There is a graphic of a labelled jar of salt.

4/4 The POTs challenge only approximates one part of what it’s like to have POTs. Other common management strategies can include: compression garments, off-label pharmaceuticals, pacing and rest practices, safe movement (within energy envelope and not triggering PEM/PESE/PENE!) Treatments for POTs are generally difficult to access, especially for BIPOC & folks living away from major cities. END

12/07/2024

Image Description 1/4: A title page asking, "What is it like to have POTs? Try the POTs Challenge! Sodium edition" with a little animated scale swinging from green to red.

2/4: Four basic facts about POTs. Postural Orthostatic Tachycardia Syndrome (POTs) is a form of dysautonomia where someone’s heart rate shoots up suddenly when they change positions, usually from standing up. POTs makes everything significantly more tiring, because your body is working much harder to do standard things. It’s categorized as a “dysautonomia” because there is no issue with the heart, the issue is actually with the autonomic nervous system. One management strategy is to increase blood volume via high sodium diet and hydration (the Canadian Cardiovascular Society position statement on POTS recommends 10g NaCl [~5g overall sodium] and 3-4L of water daily)

3/4: "POTS Challenge: Try It! For able-bodied people with no heart issues only." and then the instructions, "Measure your sodium intake for one day. Use the sodium content on food labels and search online for estimates for unlabeled food. Use a kitchen scale for more precise measuring. Increase your sodium intake to 3g for one day. Remember to drink 2-3L of water as well! Note the challenges you encounter. How often during the day did you have to think about it? Were you able to meet the 3g sodium goal? What about any emotional load? What challenges might you encounter over one week? One month? Years? Consider cost, time, energy/effort, juggling other responsibilities & needs." There is a graphic of a labelled jar of salt.

4/4 The POTs challenge only approximates one part of what it’s like to have POTs. Other common management strategies can include: compression garments, off-label pharmaceuticals, pacing and rest practices, safe movement (within energy envelope and not triggering PEM/PESE/PENE!) Treatments for POTs are generally difficult to access, especially for BIPOC & folks living away from major cities. END

05/07/2024

20 days, 2 urgent doctors appointments, 1 stomach ulcer, and 1 federal by-election after my wedding, I resumed a modified version of my physio routine.

And promptly wept for 20 minutes straight.

At first I was crying from happiness- that I could do this again, that I could build strength to support my joints, that I could exert my body at all for anything beyond necessities.

And then I was crying for how hard the last three weeks have been. Most of the people at my wedding had plans for the next day. I scarcely dared to have plans for the next month.

There are people with ME/CFS who never have plans again after chronic over-exertion. That reality, and the reality of my body that IS recovering but shouldn't have to recover like *this* just ripped through me.

This body breaks my heart. And I will let it break me open, and then figure out how to live with it again.

Image description: A subtitle, "I will figure it the fock out AND" in block letters "This body breaks (broken heart emoji) my heart."

01/07/2024

Image Description 1/4: A title page asking, "What is it like to have POTs? Try the POTs Challenge!" with a little animated scale swinging from green to red.

Image Description 2/4: Four basic facts about POTs. Postural Orthostatic Tachycardia Syndrome (POTs) is a form of dysautonomia where someone’s heart rate shoots up suddenly when they change positions, usually from standing up. It requires an increase of +30 beats per minute upon standing. POTs makes everything significantly more tiring, because your body is working much harder to do standard things. It’s categorized as a “dysautonomia” because there is no issue with the heart, the issue is actually with the autonomic nervous system.

Image Description 3/4: "POTS CHALLENGE: TRY IT! For able-bodied people with no heart issues only." and then the instructions, "1. Put on a device that measures your heart rate. (Or try a heart rate monitor app on your phone.) 2. Note your resting heart rate- it should be between 60 and 100bpm. 3. Do whatever it takes to increase your heart rate to 130bpm as fast as possible! (Burpees, stair sprints, etc.) 4. Notice how it feels in your body to spike your heart rate this quickly. Are you tired? Dizzy? Hyped? Anxious? Can you think clearly? 5. Imagine this happens every time you stand up: 40+ times a day. 6. Imagine living your life like this, forever." There is a graphic of a watch with a heart and an ECG reading over it.

Image Description 4/4: The POTs challenge only approximates one part of what it’s like to have POTs. Other common triggers for spikes in heart rate can include: Speaking, Showering, Eating, Warm Weather. There ARE treatments for POTs, but they are generally difficult to access, especially for BIPOC & folks living away from major cities. Two ECG readings scroll past a pair of glasses at the bottom center. END.

15/03/2024

Come meet me and 16 other contributors to next Wednesday at Ben McNally Books, 6pm! You can register at the link in my bio- and get your books signed!

I've always preferred communicating in text- so this reading feels both very vulnerable and very empowering to me. I have a lot of mixed feelings around sharing this!

It took me months to record this reading. It feels incredibly vulnerable to share my voice and my body, so I layered in crip care: I have s**t memory so I'm reading off a screen here, I'm not forcing myself to make eye contact with the camera, I allowed myself distance (darkness, a reflection, headphones) from the recording, and I waited until I was home alone to do it.

It feels right, with this piece, to have needed crip time and crip care and to have given it to myself.

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Video description: A video of Kaia Arrow reciting an excerpt from her piece in Magdaragat in a dark room, reflected in a round mirror. Kaia is a Filipina with long dark hair, a dark top, and a pink & gold malong worn as a skirt. She has silver finger braces that flash in the light.

Text:
I am privileged
That my survival
Depends on Asking Questions
Instead of Swallowing them down.

This is our intergenerational wealth.
Passed down by parents who survived on a steady diet of silence.
My body is an act of defiance
That I’m an un/willing accomplice to

Sometimes I revel in how uncomfortable it makes other people.
Sometimes I have to, to keep going.

They “play along” with our personhood until it’s too much work, too tiring, too challenging. They “tolerate” and “allow,” these so-called allies of anti-racism and anti-colonialism. They tell me (token Brown woman, token crip, token q***r) about their token learnings, as if they’re gifts I should be grateful to receive. As if unlearning white normativity, capitalism, and colonization isn’t work to free us all.

I dream of celebrating in tandem with our ancestors once again, to sing their songs and write new ones.

13/03/2024

How incredible to have my piece excerpted by socio-anthropologist and author Karl Gaspar ! Check out his review of Magadaragat in MindaNews , a part of the Mindanao Institute of Journalism.

Don't forget to register for Magdaragat's Toronto launch event at Ben McNally Books, next week Wednesday March 10th at 6pm. Link in bio!

(And my piece is still on display at until April 28th!)

Image description: A quote from Karl M. Gaspar's review of Magdaragat, in bold "Kaia M. Arrow brings back the lamentation of a people who have lost so much owing to colonization in her piece – Dreams of Pinoy Joy: Decolonial Rage and Disabled Resistance in the Diaspora:" and in regular text, "“I grieve what has been taken from us. I don’t know what holidays my ancestors celebrated before Spanish galleons broke the horizon in 1521. I don’t know what songs they sang, the rituals they had, or the lives they lived. These stories are systematically destroyed by the Spanish colonists, American imperialists and Japanese occupiers. I don’t imagine some pre-colonial utopia. There is precious little left to imagine at all.”" The cover of Magdaragat and header for Karl's column, "A Sojourner's View" top the image, while the logo for The Willow's Work is stamped at the bottom.

11/03/2024

Thank you to for these beautiful words on my piece in Magdaragat! Our Toronto book launch is NEXT WEEK! Come join us at Ben McNally Books at 6:30pm on Wednesday, March 20th and get your copy signed by 17 contributors. Register at the link in my bio!

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I’ve been dealing with *so much* white fragility this year, that this whole piece by Kaia spoke what’s been inside my heart and what has been impossible to explain to people who don’t have a clue what their blindness feels like.

The last lines of this piece had me floored. I wanted to post those words too but then again, you need to read it in full.

In all its imperfections, I’ve been still reading . This piece comes from the anthology if you’d like to read it in full!

Image description: A quote from Kaia Arrow's piece in Magadaragat created by , "They "play along" with our personhood until it's too much work, too tiring, too challenging. They "tolerate" and "allow", these so-called allies of anti-racism and anti-colonialism." In bold, "They tell me (token Brown woman, token crip, token q***r) about their token learnings, as if they're gifts I should be grateful to receive." In regular text, "...The destruction continues every time whiteness is positioned as normal, as unquestionable, as standard' when whiteness receives the benefit of the doubt, while the rest of us are subject to scrutiny."