[The Stage is on Fire] is a page-turner in which, much like life, there are no easy answers and yet each step of the journey yields insight and hope. This work of heart must not be missed!
Katie Steedly’s first-person piece [The Unspeakable Gift] is a riveting retelling of her participation in a National Institutes of Health study that aided her quest to come to grips with her life of living with a rare genetic disorder. Her writing is superb.
In recognition of receiving the Dateline Award for the Washingtonian Magazine essay, The Unspeakable Gift.
I thank you … It is the authenticity of your “class notes”; and it is the delicacy and skill with which you present the nuances of classroom life and the actuality of your students’ and fellow teachers’ lives.
I am not supposed to be here. It has taken me a lifetime to be able to write those words. I have a genetic condition, Turner syndrome, and spent more than 25 years running from the fact that only two percent of pregnancies diagnosed with Turner syndrome survive. I am part of that two percent. Last year, in a bar in Cincinnati someone who had heard of Turner syndrome described me as a miracle. I have always believed that this whole thing — life writ large — is a miracle, and we must open ourselves up to it with every breath. To hear those words spoken. Stopped me in my tracks. I was diagnosed at 15 and never talked about it. Let me explain. I never talked about it until I was 37 when I participated in a Turner syndrome study at the NIH and wrote about it in the Washingtonian. (You can read the article here.) I jumped into the deep end of emotion’s pool.
Last year, in a bar in Cincinnati someone who had heard of Turner syndrome described me as a miracle. I have always believed that this whole thing — life writ large — is a miracle, and we must open ourselves up to it with every breath. To hear those words spoken. Stopped me in my tracks.
I am not sure why I waited so long to talk and write about it. Maybe it was fear of my condition? (“If I just did not talk about it, it will go away.”) Perhaps I was determined not to be defined by my diagnosis. (“There is so much more to me than Turner syndrome.”) Perhaps I desired to be normal. (“I want to live in a world where I get to at least consider having children (infertility is common for people living with Turner syndrome), a completely healthy heart (congenital heart issues are also common), and living to 100 (all Turner syndrome realities often decrease life expectancy).”) I have learned over time that we all carry weight. We all have stories. We tell them when we must.
Lately, I have not been able to stop writing about Turner syndrome. That did not happen immediately after the Washingtonian piece in 2013. I was still largely silent, still refusing to tell my story. I would talk about it in select doctor’s offices, write about it in a Turner syndrome newsletter, and even host a party bringing together families of people touched by Turner syndrome, but never venture too far outside my front door toward true vulnerability.
I have learned over time that we all carry weight. We all have stories. We tell them when we must.
Now, I realize Turner syndrome is central to my story. It’s not my whole story, but a big part. Turner syndrome is fundamental to who I am. My health has required vigilance often reserved for people who are chronically ill since I was 15 years old. That wears a person out. I have not been afforded the luxury of invincibility — feeling like this ride will last forever. Lack of invincibility has sling-shotted me between extreme caution and questionable risk-taking. A thought that should/could/must be excavated in future writing.
My overwhelming desire to prove that I am worthy of this amazing life has driven me to complete a Ph.D., run a marathon, work for leading cultural institutions and major universities, independently publish a memoir, and suffer the slings and arrows of freelance writing. In general, I have not been able to take things for granted. Being able to take things for granted is a gift. Most of all, I have felt the need to pay more attention than life often requires.
Why I Write?
I write to pay attention. I write to make sense of a world that can be beautiful and cruel. I write because words are my love language. Writing is how I follow Mary Oliver’s life instruction to “tell about it.”
I think about the shoulders on which I stand as I live my writer’s life. I am the daughter of an English teacher who read with me every night growing up. I thank her. I thank my Second-Grade teacher, who carefully commented on my first utterances on a page. She was the first of many teachers whose kindness fanned my writing flames. I thank my dissertation chair, an academic descendant of giants. I thank the philosopher Maxine Green, whose work I drew in my dissertation. I received a handwritten note thanking me for sending her a copy of the work not shortly after I finished. She complimented the piece and said she hoped to see it published. I took that charge to publish to heart. That made me feel like a writer.
