The Willow's Work

Last night, I attended a screening of film "Canadian Adobo" hosted by and and we had a discussion about utang na loob that reminded me of a blog I wrote a few years ago. Disability changed my entire life, including how I related to cultural concepts like utang na loob. Read the whole blog at the link in my bio!

Slide 1 of 4: Utang na loob is a community commitment, not an individual debt. When we think of utang na loob ("soul debt") as a commitment to reciprocate support within our communities rather than to return resources to specific individuals, we are in alignment with community-oritened values, and with key principles of disability justice.

All slides have a dark banana leaf background, with The Willows Work, Disabled Pilipinx, and Anito Ritual listed on the bottom

Slide 2 of 4: As my disability changed, I became less able to engage with utang na loob as I knew it. I was receiving support I couldn't return in kind, because I no longer had the funds or the capacity - and had no reasonable expectation that would change.

Slide 3 of 4: Utang na loob works best on a community level. Instead of trying to return the support I received to the people who gave it to me, I focused my efforts in returning that support to our communities. I shared my strengths with those who would benefit from them most. When we take care of each other, we take care of our communities, and our communities take care of us.

Slide 4 of 4: Treating utang na loob as a community commitment instead of an individual debt aligns well with these principles of disability justice: anti-capitalism, sustainability, interdependence, and collective liberation. END image descriptions.

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."

I'll be reading poetry next Thursday (including a few unpublished pieces) for the next installment of Who's Afraid: Disability Justice edition!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

Who's Afraid? (of Disability Justice) A reading series exploring fear, what we are afraid of, and where that comes from. This time the theme surrounds Disability Justice.

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

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

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."

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.