And did you get what
you wanted from this life, even so?
And what did you want?
To call myself beloved.
To feel myself beloved on the earth.”
Raymond Carver, “Late Fragment”
I am a woman living with Turner syndrome. Turner syndrome results when a female has only one complete X chromosome (rather then two X chromosomes) in each cell. Most of the time, when conception occurs with one X gene missing a miscarriage will happen early in the pregnancy. About 1 in 10 of all miscarriages in the first trimester are due to Turner syndrome. My birth was improbable. Tuner syndrome generally manifests itself in short stature, infertility, heart and kidney issues, bone density problems, and hearing loss.
I participated in a Turner syndrome study at the National Institutes of Health several years ago to figure out exactly how Turner Syndrome impacts my body. I wrote an essay about that research experience. The essay was published in the Washingtonian. Writing and publishing the essay was painfully scary. The entire journey saw many gut check moments. Did I share too much? Did I share enough? Was I strong enough for people to learn that much about me? What if someone responded negatively? Once my story was out there I could not take it back.
The response to the essay was overwhelmingly loving and supportive. I was held in a light that I had never experienced. I learned a few things in the process.
Secrets are heavy to hold.
It wasn’t until I started talking about Turner syndrome that I realized it was a secret I carried for a long time. It was a truth I knew and never disclosed. It was always something that was a footnote to the real text of my life. I was diagnosed at 15 and did not talk about it until my thirties. I never really thought of it as a secret. I minimized, rationalized, denied, bent, and forgot the secret over the years. It was not until I started talking about living with Turner syndrome that I realized the impact the secret had on my life. I had to first acknowledge it was a secret before I could make peace with the truth and share it. I think that is true of all secrets.
Telling the truth softens the soul.
The other day my best friend told me I am a soft person. She said it right after explaining she thought I was incredibly strong. She made me think about what it really means to be soft, and the relationship between softness and strength. Perhaps softness is akin to vulnerability. My publication experience taught me the value of vulnerability. My publication experience taught me the connection between truth and softness and strength. I want to be soft. I want to be the kind of soft that feels things deeply, with a heart big enough to span oceans. I want to be the kind of soft that experiences both joy and sorrow with fierceness, and honesty, and kindness. That is softness to me. Telling the truth has allowed me to hear strangers’ stories more completely. That has made me softer. Telling the truth has made me less fearful. That has made me softer. Telling the truth has shown me the goodness in people. That has made me softer.
Courage is contagious.
People have told me my essay is courageous. People have let me know they have been inspired. One reader who is undergoing chemotherapy felt the words provided his only relief from chemo fatigue. Another reader explained the essay encouraged her to continue to support her daughter who lives with Turner syndrome. Another reader, who has been struggling since her mother’s death, let me know reading my story encouraged her to seek the help she needs. Yet another reader shared his sister lives with a condition similar to Turner syndrome and wants to share the story with her. I have been profoundly moved. Their words have touched my heart. Telling this story has connected me to people in ways I could not have imagined. Telling my story has had a ripple effect. Telling my story allowed others to explore their story. Exploring our stories is an act of courage. Sharing our stories changes the world.
I am loved.
One of the major struggles of the essay, and perhaps of life in general, is learning to love yourself and act lovingly in the world. In some small way this essay was a love letter to the world. Writing this essay allowed me to connect to the love that surrounds me. From the notes I have received, to the conversations I have had, to the new connections that have been made, I know I am loved. I feel love that comes from having a common story. I feel love from strangers who have taken time to read and reflect on my words. I feel love from friends and family and have reached out to share their thoughts and feelings as they have grown to know me more deeply. Love has grown from my capacity to be vulnerable. I am reminded of Raymond Carver’s words as I think about the essay. I can honestly say I feel myself beloved on this earth. To love and be loved is the unspeakable gift.