EDS Awareness 2022: Patch Kit and the Solidarity of Suffering

I had a different piece of writing planned for Ehlers-Danlos Syndrome Awareness Month this year, but reeling from a mass shooting (and the gut-wrenching awareness that anyone reading this will have to wonder even which one I’m referring to) has turned my head around and made me reflect on the nature of suffering as a societal phenomenon. A physical disability like EDS is so often a source of isolation (among its many challenges) and yet as I watch so many people trying to reconcile their grieving, I think about the capacity we have to connect in the face of suffering.

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Leave No Griever Behind

It’s no secret that American society does a lousy job of allowing grief its proper place in everyday discourse. Or maybe it is a secret in the sense that with so few people talking about it, it’s not even sufficiently part of most folks’ consciousness to even form an opinion about it. And yet humankind is nothing if not a potpourri of grievers. There are folks in states of intense grief, folks for whom the sting of grief has abated over time or for whom the grief was more distant in the first place, and folks in the “not-yet-griever” category who are going about their lives without thought to or preparation for the inevitability of grief brought about by the inconvenient fact of human mortality. Literally everyone who has another human in their life is impacted, and yet so few are inclined to talk about it. It doesn’t have to be that way and there are things we can do as individuals and as a society to open our eyes and thereby share the load more equitably.

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Which Side Are You On? The myth of neutrality in racial justice

“The time is always right to do what is right.”

“The arc of the moral universe is long, but it bends towards justice.”

“Injustice anywhere is a threat to justice everywhere”

These quotes from the Rev. Dr. Martin Luther King have two things in common. One, they are inspiring examples of his important work and his skills as an orator. Two, they are so universal that they have been used by right-wing politicians to bolster actions and philosophies completely antithetical to Dr. King’s beliefs and work.

Before this important holiday gets washed away in the attempted gaslighting of portraying Dr. King as somehow the vanilla yogurt of the civil rights movement, let’s stop for a moment to consider reality.

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Stop the Bleeding: What Disability Has Taught Me About Treating the Symptom (Societally, Physically, or Otherwise)

Right now a lot of people I know are navigating the cognitive dissonance of joy and trepidation. They are elated by the outcome of the election, as many millions are (and as, turning the tables from 2016, many millions aren’t). At the same time it’s harshing their mellow to realize that there will be backlash and that core issues that divide us will remain as roadblocks for at least the foreseeable future, regardless of whether a single polarizing human is amplifying them. Here’s what life with EDS has taught me about how to view this.

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Top 10 Favorite Tribute Songs for Musicians/Friends

The recent release of my Love Right project has made me reflect on the many others who have used music to paid tribute to those who have departed, whether loved ones or heroes and whether musicians or not. This list centers on those in the middle of this Venn diagram – musicians paying tribute to fellow musicians who were also their friends, and doing so with music created for that purpose.

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Bravo to Phil Schaap, NEA Jazz Master

I’m a couple days late here, but bravo to the three brilliant and deserving musicians in the newest class of NEA Jazz Masters. I particularly want to shout out the 4th member of that cohort, the historian/producer/archivist/DJ Phil Schaap. He’s a mysteriously polarizing figure (though literally the only criticism I’ve ever heard is that he talks too much, which is maybe true but the absurdity of ME criticizing someone for that is more than my brain can handle) but my goodness has this man spent his life working to elevate the visibility and understanding of the art form he loves from the bottom of his heart and the depths of his utterly remarkable mind.

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EDS Awareness Month 2020: Finding Your Inner Toilet Paper (reassurance when things might not be okay)

I’ll just say it: my mother was a toilet paper hoarder. It’s more interesting and instructive than that, though, and I as I’ve reflected on it, I think it applies to other facets of life and coping with uncertainty and adversity, particularly at times of disruption and upheaval. For this year’s Ehlers-Danlos Syndrome Awareness Month essay, I’d like to examine that (though, sorry to disappoint you, there will be nothing particularly scatological here).

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