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 a miracle. I have always believed that this whole thing — life writ large — is a miracle, we are all miracles, and we must open ourselves up to it with every breath. To hear those words spoken about me topped 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 National Institutes of Health and wrote about it in the Washingtonian. (You can read the article here.) I jumped into the deep end of emotion’s pool.

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.

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.