Last Tuesday, my father was put into hospice care and the medical staff evaluating him said that he had maybe a couple more days, possibly more like hours . . . and yet he kept on going for six days. One thing that this did was provide me with the impetus to contemplate the notion of persistence.
Continue ReadingI am happy and proud to announce that I will be presenting this year at the Ehlers-Danlos National Foundation’s annual conference. This is a great honor for me and, perhaps more significantly, the fact that I am so excited about this is a great sign of how far I’ve had to come to reconcile my place in that world.
Continue ReadingWelcome to installment 3 of EDS Awareness Month Shindig on the Blog. This year: Losing Everything. Fun stuff!
Continue ReadingWelcome to this year’s installment of EDS Awareness on the blog, this time on the topic of accommodations for an “invisible” disability.
Continue ReadingMay is EDS Awareness Month and here I discuss how one’s ability to “belong” is impacted by having a “rare disease.”
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