My body doesn’t feel like it’s made for sex anymore. The body I had when I first met my husband, the body that lifted 50-pound bags of flour and kept up with the men in the kitchen, running a station solo during the busiest of Friday nights, has morphed into a body that can’t quite keep itself knit together. The body that allowed for rooftop sex and fooling around in cabs, quickies and sexual marathons is now a body that requires extensive preparation for intercourse. The progression of Ehlers-Danlos Syndrome is cruel. I miss that old body. I grieve for it. I imagine my husband does as well.
My husband and I clicked physically the moment we met — so quickly that I called my mom after our first night together and told her I was going to marry him. Our first few years together we fooled around everywhere. New Yorkers make an art out of ignoring the people surrounding them, and we took advantage of that fact in a myriad of ways, including taking the elevator up to the roof of our twenty-one-story apartment building and sneaking through the security gate to the one corner where the security cameras didn’t reach.
New Yorkers make an art out of ignoring the people surrounding them, and we took advantage of that fact in a myriad of ways
Now, we try to make up for my not being able to have sex very often these days in other ways — date nights, hugs and constant touches, vacations and flirtatious car rides. (You can build up a surprising amount of sexual tension in the passenger seat of a car, it turns out.) None of it feels like enough, and on very-high pain days, even the lightest of touches is painful.
I spent a few months, a while back, going to weekly pelvic physical therapy — which is physical therapy, but internal. My Ehlers-Danlos Syndrome has progressed to the point where my pelvis no longer holds together properly — my tendons and ligaments are degrading, which leaves my muscles doing all the work. I was experiencing daily hip and pelvis joint subluxations and incredibly intense muscle spasms and had locked up so tight that basic elimination was difficult. Sex was impossible. My physical therapist gave up on…