I am new to talking about Turner syndrome. I have been writing about it for a few years now, but talking about it is a different thing. Seeking to build relationships with strangers connected to Turner syndrome, and risk opening the flood gates of my feelings with real people, face-to-face, story-by-story is something I had not ever done before last night. In that way, reaching out to people who are similarly different feels the same as reaching out to people different from ourselves. Risk is risk. I have always heard, and I am not sure where I heard it first, “Do the thing that scares you.” People say there is meaning, and heart, and growth, and joy, and softness, and kindness there. Connect Miami dared me to go there. To do the thing that scares me. It said, “It does not have to be a big thing. Just do it.”
The personal demon wrestling match started the minute I let Connect Miami know about my connection experience idea. “But, I only know one person with Turner syndrome.” “Do I really want to be that vulnerable?” “Will people even come?” I contacted several Turner syndrome organizations. I reached out to medical professionals who treat women and girls with Turner syndrome in Florida. I joined Turner syndrome social media groups. Each time, telling my story and connecting with other people was woven into the fabric of nurturing the Butterfly Dinner. The Butterfly Dinner got easier to explain. The response was supportive.
The day of the event was filled with nerves, and joy, and wrangling. Stuff had to be purchased. The room had to be arranged. The plans had to be executed. I remembered, while running here and there, that this whole thing (the reaching out, the looking inward, and the stepping forward) was part of something bigger. Between sitting soda and tea in the fridge, trying to get a wi-fi connection for music, and putting the tablecloth on the table, I thought about the fact this was just the beginning of an ongoing and important challenge I was accepting. The challenge to connect with others, not just people with Tuner syndrome, but all people.
The clocked ticked and I wrote questions for a game I wanted to play after dinner. The game was designed to give shape to our stories. There were 9 questions ranging from, “Where are you from?” (which often included “How did you wind up in Miami?”), to “What is your favorite song?”, to “What is the best advice you ever received?”, to “How do you connect in Miami?” The plan was that we would read our answers aloud after all the questions had been written on our sheets of paper.
The guests arrived and the party started. Conversation immediately flowed. I felt openness and kindness. Comfort filled the room. Five people, in addition to Greg and myself, were there. The group was small and safe. I am not sure why I use the word safe here, but I think being vulnerable requires feeling safe, and I felt safe in this group. Common stories were shared. Information wrapped in personal experience made my eyes light up and my head nod. I was understood. We talked like we were riffing a jazz tune. We ate and laughed between bites. We played the story game, further connecting us to one another. The party ended with a group picture and hugs.
What did I learn from hosting the Butterfly Dinner? I learned reaching out doesn’t have to be huge thing. I am so thankful I did not wait. I would have never met the wonderful women with whom I shared a meal. I have been invited to join a book group. I know people who will be attending the National Turner Syndrome Conference, and may take that step with them next year. I am connected to 5 new people, and those connections will lead me to knowing myself more deeply and others more openly. I learned that connecting from our heart, from wherever we are, through our fears and doubts and excuses, is a true blessing. It is felt inside our muscles and bones, to the very core of our being, and reverberates in our world. I will continue to take the Connect Miami challenge. I will continue to reach out in small and big ways. I will be the person who invites. I will be the person who says yes when invited. I will be the door holder, the smiling jogger, the attentive person at the grocery checkout, and the generous tipper. I like to think there will be a butterfly effect, not only to the Butterfly Dinner, but also to Connect Miami, where Miami learns kindness and compassion one connection at a time.
Katie Steedly Curling is a seeker, thinker and writer with experience as a program evaluator and author of a memoir and an award-winning essay that was published in the Washingtonian. Learn more about Katie and her work here.
The original posting of this essay can be found at http://www.katiesteedly.com/connect-miami-the-butterfly-dinner/.