I am relatively new to talking about Turner syndrome. I was diagnosed with Turner syndrome at the age of 15. I discussed it rarely outside of doctors’ offices after that initial conversation. Turner syndrome results when one of the X chromosomes is missing or partially missing. Turner syndrome can cause various medical and developmental problems, including short height, infertility, cognitive and social differences, and heart defects. It is one of the leading causes of miscarriage. I have been writing about it for a few years — one example being The Unspeakable Gift in the Washingtonian — but talking about it is different. Seeking to build relationships with strangers connected by Turner syndrome (and risk opening the floodgates of my feelings with real people, face-to-face, story-by-story) is something I had never done before the Butterfly Dinner. The Butterfly Dinner happened a few years ago as part of a community-wide initiative in Miami called Connect Miami. (It was a oneness expedition before I knew what that was.) In that way, reaching out to people who are similarly different feels the same as reaching out to people different from ourselves. Strangers are strangers. A risk is a risk. I have always heard, “Do the thing that scares you.” We can find meaning, heart, growth, joy, softness, kindness, and magic there.

After reaching out and coordinating the event — in a new community, with new people — 7 people attended the Butterfly Dinner. Conversation flowed. Our stories intersected. Oneness happened as we talked about families (none of us had children, but shared rich family experiences). Oneness happened as we talked about careers (despite being told how difficult building careers would be, we all had careers). Oneness happened as we talked about health (we each navigate the physical experience of Turner syndrome and maintained a high quality of life). In that way, oneness is understanding and acceptance. Oneness was bigger than our Turner syndrome story. It was bigger than our common fears, pain and history. It included joy, beauty, ease and lightness. 

I had lived most of my life afraid of talking about Turner syndrome. Really, I had been afraid to talk about it at all to anyone. Afraid of acknowledging my otherness. Afraid of mortality. Afraid of failing at the task of becoming a mother. Afraid of being too short, slow, or [fill in the blank with any societal expectation]. Oneness with these women that night meant embracing the entirety of myself. Oneness means we are one with it all. Oneness with it all means being one with ourselves. True oneness is born of truth and integrity, and grace.