Or, living with a mild invisible disability I have Type III Ehlers-Danlos Syndrome (EDS), a condition that’s led to everything from breakups to dance championships. You’ve probably never heard of EDS. It’s so rare that I’ve never talked with another patient or had access to a specialist. Nobody knows what it looks like, so nobody recognizes it when it’s right in front of their face. It’s the reason I stare down able-bodied people sitting in the priority seats (seats reserved for seniors and people with disabilities) on San Francisco’s public transit system. EDS affects connective tissue, which holds your body parts together like glue. If normal connective tissue is made of Super glue, then mine is made of Elmer’s glue. My joints are hyper-flexible, at risk of dislocating and frequently cause me pain. Sometimes EDS weighs me down and makes me afraid that I’ll fall apart–literally. The condition can lead to chronic pain, daily dislocations, wheelchair use and organ disfunction. But it’s also kind of magic. I think that because my joints are so loose and provide such little resistance, they conduct sound well. It’s the only way to explain why I hyper startle, or jump so high when I hear unexpected sounds. It also means that I’m a good dancer, because when I listen to music, I actually feel the rhythm in every joint.

Photo: Wendi Jonassen

Why I dream of empty train seats Though I’ve never pulled the EDS card for a seat, I have fantasies about doing so. What seems like a simple train ride is physically taxing for me. Before I leave the house, I decide which shoes to wear by calculating how my hips feel, how far I’ll walk, how nicely I’m dressed and the likelihood that I’ll go dancing. If I walk more than four blocks in unsupportive shoes, my hips ache like rusty hinges and my feet burn. Standing and sitting up is draining because my joints are naturally loose, and it requires more energy to keep them taut. My limbs are tired by the end of the day. When I board a train after walking a lot or a long day at work, I want to sit down. I’m unstable and I teeter. My shoulders get sore from swaying under the handrail. I’ve had one serious dislocation before, and I’m afraid that one unexpected jolt could break my hip.

Photo: Wendi Jonassen