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 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 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.
Continue ReadingFor this year’s EDS Awareness Month post, I explore one of my main techniques for cultivating gratitude and perspective.
Continue ReadingI’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 ReadingA friend suggested that this year, for my 10th (!) installment in my annual series for Ehlers-Danlos Syndrome Awareness Month, I talk about visibility, and that got me thinking about the inner journey that brought me to that point.
Continue ReadingIf I had a dollar for every time I dragged my aching carcass out of bed the morning after a gig and declared “I quit,” then I’d be buying dinner for everyone reading this. A couple weeks ago I had a gig in NYC with my old friend and colleague Amanda Monaco’s band, also featuring one of my longtime musical heroes. And I finally put my money where my mouth was and I DID QUIT, though not in the way I have historically intended with the statement.
Continue Reading2017 EDS Awareness: Guest post by Kate Ten Eyck
Continue ReadingThis year’s EDS Awareness Month post: examining what it means to speculate on “what might have been” without our adversity.
Continue ReadingI really appreciate the sentiment when people praise me for overcoming Ehlers-Danlos Syndrome. But let’s be clear, I haven’t “overcome” anything. Every day and every time I so much as consider a venture to the piano (or other such instrument), EDS and the corresponding obstacles are central to my consciousness. What is true, however, is…
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