* The first audio recording (above) is an update on what’s going on with my body. (Sorry for all the “um”s.)

* The second recording (below) is Kevin and I digging into what this pain and experience has been like, how we feel right now. *If you only have time for one, listen to the second.*

* The third is a video of hopeful music sung by Kevin. (watch below) Actually, if you really have limited time, go for this one.

Reminders:

* What to say and not say to someone in chronic pain

* With this, see excerpt from John Green below – it’s phenomenally accurate.

* There is holy time amidst great pain.

* The caregiver needs just as much support as the one physically hurting.

* More about the conditions I have: persistent dental alveolar pain, Ehlers-Danlos syndrome, craniocervical instability (2nd article) and dysautonomia

* Dr. Nixdorf, mentioned in articles of PDAP, is my doctor at the U of M.

* Books about chronic pain that I recommend: Between Two Kingdoms by Suleika Jaouad, Everything Happens for a Reason and Other Lies I Believed by Kate Bowler, Disjointed by Diana Jovin, The Way Out by Alan Gordon, The Body keeps Score by Bessel Van Der Kolk; I also very highly recommend the Curable app

* My back story: See prior updates on Substack and CaringBridge

* For those who have asked, to assist in medical and related expenses, become a paid subscriber below or visit https://www.paypal.me/atanymoment or Venmo @Kayla-Stenstrom. Thank you immensely.

More from John Green (section follows the segment read in the second audio):As “Susan Sontag wrote, ‘Nothing is more punitive than to give disease a meaning.” The virus that spread through my spinal fluid had no meaning; it did not replicate to teach me a lesson, and any insights I gleaned from the unshareable pain could have been learned less painfully elsewhere. Meningitis, like the virus that caused it, wasn’t a metaphor or a narrative device. It was just a disease.

But we are hardwired to look for patterns, to make constellations from the stars. There must be some logic to the narrative, some reason for the misery. When I was sick, people would say to me, ‘At least you’re getting abreak from work,” as if I wanted a break from my work. Of they’d say, “At least you’ll make a full recovery,’ as if now was not the only moment that the pain allowed me to live inside. I know they were trying to tell me (and themselves) a tightly plotted and thematically consistent story, but there’s little comfort to be found in such stories when you know damn well they aren’t true.When we tell those stories to people in chronic pain, or those living with incurable illness, we often end up minimizing their experience. We end up expressing our doubt in the face of their certainty, which only compounds the extent to which pain separates the person experiencing it from the wider social order. The challenge and responsibility of personhood, is to recognize personhood in others – to listen to others’ pain and take it seriously, even when you yourself cannot feel it.” – TheAnthropocene Reviewed