01/02/2026
We see that we are webworks of complicated kinship rather than single beings. We are unruly ecosystems radically susceptible to the disagreements and coalitions that form and unform within our bounds. We are soil that depends intimately on the mycorrhizal collaboration of other beings to hold us together. Often, I have planted myself on the forest floor and secretly intoned to the fungi spooling out below me, “Come and colonize me. If there’s too much open space in my body, maybe that space was left open for you.” If I can’t have properly working human connective tissue, then perhaps mycelial connective tissue will do. It is interesting to me that the other people I know with EDS are highly attuned to ecology, to animals, to environmentalism, to plants, to the aliveness of the more than human world. Perhaps there is a way that the absent connective tissue opens up interstices in the body where other species slip in.
I think also of dark matter and energy, the very invisible connective tissue of the cosmos. Although we cannot measure this matter, it makes up 27% of the universe and our own bodies. All of us, whether we know it or not, are made up of otherness. We are threaded through with unknowability. We are more like constellations, a few stars flung against empty space, pretending at a shape. I want a cure for Ehlers Danlos. I want more people to understand the complexity of this condition and to advocate for research into its management and cure. But I also desperately want to join hands with those of you who are also navigating this disease and I want to say, “We are constellated beings. We are masters of interstitial intelligence, thinking with relationships rather than individualism. We think in-between the joints. In the friction and uncertainty. We are the tilled ground where other species can take root.”
Image used by Robert Rauschenberg.
