EDS Awareness Month 2021: When Are We Playing with House Money?
For this year’s EDS Awareness Month post, I explore one of my main techniques for cultivating gratitude and perspective.
Continue ReadingThoughts on “Cancel Culture”
Some real talk about “cancel culture” for those who care to read
Continue ReadingWhich 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.
Continue ReadingStop 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.
Continue ReadingTop 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.
Continue ReadingBravo 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.
Continue ReadingEDS 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).
Continue ReadingReaffirming Purpose Amidst the Chaos
I present you a tale of affirming and reconnecting with my sense of purpose amidst the anxiety and disorientation of all that’s going on. If you’re needing something like that (or at least a ray of hope that it could happen) then I invite you to read on. I considered keeping this to myself but figured there’s likely someone here who needs to hear it.
Continue ReadingMLK Day Reflections 2020: Avoidance Can Be Awesome! (deferral, however, is another story)
Avoiding things can be wonderful. Unfortunately, following the impulse of avoidance often leads to simply deferring, adding to the cumulative stress rather than circumventing it. Knowing the difference is important, and the Rev. Dr. Martin Luther King, Jr. was remarkably good at that.
Continue ReadingLove as Palliative Care
December is for many a time of joy, and one of the most joyous things about it is the glee of young people and, in many cases, the way the milestone of an annual holiday allows us to chart and reflect on their trajectories of growth. While I will invariably experience some of that in the coming weeks, for me the shooting at Sandy Hook Elementary in 2012 forever marred the holiday season. One more specific element of that is that (at the risk of sounding particularly morbid, but I’m just trying to be sincere) I can no longer look at young people without some part of me consciously acknowledging the possibility that they may not grow up. I recognize the privilege that allowed me to make it until the morning of my 39th birthday with that aspect of mortality and frailty remaining an abstraction, but so it went that until then I took growing up for granted. As a result, I have grappled ever since with how to keep my heart open and keep my spirit of nurturing undiminished within that awareness that everyone I know will die and some of them will do so way too soon. It is through this inner turmoil that I began contemplating the notion of love as a form of palliative care.
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