I had some special performances last year, but I think this one might have taken the cake, and in honor of EDS Awareness Month, I’ll reflect on it a bit since it is highly unlikely that you were there, as well as reflecting on a few of the moments that shaped me to be especially…
Continue ReadingI have found two go-to principles to preserve whatever integrity, agency, and semblance of sanity I might possess. Keep showing up and protect my heart. The specifics are malleable and the moment-to-moment strategies are situational but I keep coming back to these things and it keeps helping. Showing up is maybe self-explanatory? If there are…
Continue ReadingIt’s EDS Awareness Month and, appropriately enough for a milestone that occurs once per year, I have been contemplating the seasonal nature of life and the ways that a life with Ehlers-Danlos Syndrome reflects that. This was further underscored when I stumbled upon this picture from 10 years ago this spring, taken at the beginning…
Continue ReadingTurning my “f*%*” into “wow” has been transformational. I’ve probably spent more time trying to craft that opening sentence (in a way that doesn’t sound like I’m trying to sell you something) than on the rest of this, but elaborating on a passing suggestion in Pema Chödrön’s latest book really has made a big difference…
Continue ReadingIn this moment I am conflicted about sharing my annual written reflections on the Rev. Dr. Martin Luther King Jr., his legacy, and its applicability to living a more meaningful and moral life today. The violence worldwide (particularly the ongoing and overwhelming scale of killing of Palestinian civilians), the tenuous state of democracy both abroad…
Continue ReadingOne of the highlights of my 2023 has been getting to hang out at the U.S. Open with my favorite tennis player, the Dutch doubles specialist Matwe Middelkoop, a meeting spurred by the recent release of the debut album by Stankeye Jones and the Vagabond Librarians. The album features my song “Agony Of Defeat,” written…
Continue ReadingOn this Martin Luther King Day, my community in Middletown, CT continues to reel from the death of Quentin “Q” Williams 11 days ago in a car accident as he drove home from the inaugural ball hours after being sworn in for his third term as our state representative. He was as tireless in his…
Continue ReadingThis week I will turn 49 on the 10th anniversary of the Sandy Hook school shooting, a grim milestone to which I’ve been mentally counting down since December 15 of last year. I do not aspire for it to be a “happy birthday,” and I am rather ambivalent about even acknowledging the personal milestone in public, lest I subject myself to wishes to that effect or, worse, shift attention to me beyond the minimum extent necessary to share these thoughts and experiences that might have some relevance to others. I choose to remember this tragedy, on this and all other days, and below I’ll reflect a bit on what that looks like in practice.
Continue ReadingThere is none greater than Serena Williams. We’ll come back to that. I have been a rabid tennis fan for nearly 40 years, long enough to have seen a lot of shifts in the culture, fashion, gear, fitness, playing styles, and criteria by which fans, journalists, and historians evaluate greatness. They say you can’t really…
Continue ReadingI 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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