The study required that photographs be taken of me. I don’t like having my picture taken in the best of circumstances, and I was angry at being subjected to a camera’s eye.
The experience reminded me of the pictures of women and girls with Turner syndrome I had seen over the years. I couldn’t help but think about the grotesque pictures of females with the condition that appeared in textbooks, depicting abnormal bodies, webbed necks, malformed hearts, horseshoe-shaped kidneys. The subjects were never smiling; they were simply ugly. I was now being forced into an experience similar to what I imagined they had endured.
I couldn’t look at the photographer when I entered the small room. He seemed nice enough, but my mood was such that I resented the very oxygen he demanded. He asked me to remove my shirt but let me leave on my bra, camisole, and jeans. (I was relieved beyond belief.) The fluorescent lights made my skin appear corpse-like.
I was to stand in front of a screen and let my arms hang, not allowing my shoulders to tense up and curl forward. The photographer said he was particularly interested in the way my elbows extended. He didn’t give me instructions for my face, so I’m not sure it was included in the picture. He asked me to turn to the left and remain relaxed. (It’s really hard to relax when someone requests it.) I turned to the right. He came closer for what I assume were close-ups of my face and neck from various angles. I wish I’d been clever enough to think of an expression that passive-aggressively said “F--- you” or that subliminally said “Really see me” to everyone who would look at these pictures in the future.
The photo session put me in touch with an anger I hadn’t been able to articulate. I was angry that I just had to stand and have pictures taken of me. I was angry that I was hungry and hadn’t been able to eat because I’d had a blood test that afternoon. I was angry because a nurse had tried to stick me with a needle at 5:30 in the morning. I was angry that I had Turner syndrome. I was angry that I was different. I was angry that there was no cure.
• • •
One of the final tests on my last day was a comprehensive hearing exam. The audiologist looked as if he’d stepped out of a J. Crew catalog, and he had an empathetic demeanor. We had a long discussion about the connection between Turner syndrome and hearing loss. He asked me a battery of questions, then handed me a buzzer and stood in front of what looked like a rock-music soundboard.
The test was easy at first. I was told to press the buzzer when I heard a sound. I detected a variety of sounds at a variety of pitches and volumes. As the test progressed, there were centuries of silence. I got a sick feeling and began randomly pressing the button—like choosing C on a multiple-choice test when you have no idea of the answer. Every once in a while, I actually heard a sound. I couldn’t tell what pitches or volumes were more audible. I knew in my gut I was failing.
After the test, the audiologist printed the results and told me I had significant hearing loss within the pitch range of the human voice and explained this was common for Turner patients. He suggested I consider hearing aids.
A wave of fear washed over me, and tears welled. I had been through so much, and now this information pushed me over an edge I didn’t even know I was near. Somehow I heard the news as more evidence that I was less than whole. I thought about all the ways in which I was imperfect or broken, about every time I’d asked for clarification when someone spoke or nodded in agreement when I hadn’t heard something, about my need over the last few years to see people’s mouths when they talked—all the subconscious coping mechanisms I’d developed. Being flawed had now been scientifically verified. I knew hearing aids wouldn’t make that feel any better.
• • •
The study culminated in a conference in which the research team would come to my hospital room and share my results with me. I had my PICC line removed that morning and would be released after the meeting.
My mother and I were waiting, a mixture of fatigue and fear churning in my stomach, when a chaplain came to the door. She had been ordained in the same denomination in which I’d grown up, the United Church of Christ, so our theological waters converged immediately. The chaplain asked about my story and shared her own—she had a social-justice background that had taken her around the world, and she was new to NIH. She asked if my mother and I wanted her to pray with us. We said yes. (We were both exhausted from the week—my mom had spent every day with me, leaving only to sleep at my apartment—and scared about the final conference.) After about 15 minutes, the chaplain held our hands and asked that the God of health and safety watch over us. She affirmed the fullness of God’s grace and asked that it be present in our comings and goings.
Her visit brought a measure of peace and warmth to the clinical experience I’d lived at NIH. She was a reminder of my faith. She was God made real in that moment.
After the chaplain left, the research team began to assemble. One by one, a sea of spectacled anonymity filled my room and a buzz akin to that of an AM radio in the desert descended. The group of about a dozen circled as I sat on my bed and listened. My mother took notes. The principal investigator led the discussion, with analysis by one of the chief scientists. Their students listened as they explained the results of my 20 or so tests. They talked about my heart, hormones, bones, kidneys, blood glucose, blood pressure, eyes, skin, and liver. They concluded that I was pre-diabetic, had a fatty liver, needed to lose 20 to 25 pounds, had osteoporosis, and had significant hearing loss.
They wrote no prescriptions. They made no referrals to specialists. They didn’t seem alarmed by the findings. The atmosphere seemed strangely relaxed given what my body had endured—they seemed to have told this story a million times.
I tried to not interpret their lack of interest as cavalier indifference. I was both relieved and angry. Somehow this meeting didn’t provide the closure that I craved. I’m not sure what would have—short of someone saying, “We’d like to enroll you in a genetic-therapy experiment in which we’ll correct your chromosomes. You’ll grow six inches, and your ovaries, ears, and bones will be fixed.”
I know that wouldn’t have satisfied me, either. I think I yearned for acknowledgement of who I was and for the knowledge that emerges when the body is examined to the degree that physical truths are revealed and our understanding of ourselves is changed. The NIH doctors weren’t concerned with what I’d learned or experienced. That wasn’t their job.
I left bruised and a bit lighter. Years of silence had been shattered: I’d met my heart and confronted the grief I felt about my fertility issues. Somehow normal grew to include me.
• • •
I’d never again wonder if my aorta allowed blood to flow in the right direction (it does) or if my bones were as thin as lace (not quite, but I have to take calcium and vitamin D supplements). I learned that my eyes produced enough tears. I received answers to long-held questions about my physical state. I learned I was strong enough to ask questions. I learned that being whole is a complicated journey that starts with breaking our silences and learning to love the parts of ourselves we fear. I wanted to start more conversations, continuing and expanding the spiritual and psychic excavation that began within those stark halls.
I’d have a conversation with my minister in the courtyard of my church, on the stone benches where I’d passed hours. I wanted to ask him about the relationship between loving oneself and being loving in the world.
He might say, “Being loving in the world starts with loving oneself.” Or he might talk about Martin Luther King Jr. and invoke the idea that real love takes courage—the kind of which peace, compassion, and reconciliation are born—and that loving oneself is a profound act of courage. He might invoke poet Mary Oliver and remind me to “let the soft animal of [my] body love what it loves.” I would then ask him why St. Paul called love the “unspeakable gift.”
I’m not sure how he would answer. I think he would talk about how hard it is to love sometimes, and that the ability to love, even when it’s hard, is a gift.
I would have a conversation with myself at age 15. I hear this conversation as clearly as the sea knows the tide and the sky knows the sunrise. We would meet by the tallest tree in the back yard of the house where I grew up. My 15-year-old self would be wearing her Rocky’s Sub Pub uniform and pounds of blue eye shadow. I would tell her everything was going to be okay. I would show her the NIH results and explain how they describe her but don’t define her. I would tell her it’s all right to be mad as hell. I would stroke her hair and tell her she’s beautiful and whole. I would hold her and explain that she could be a world traveler, fearless warrior, and loving spirit.
Then I’d have a conversation with myself at 80. We would sit on the porch of her mountainside home. She would offer me something to drink and I’d ask for sweet tea. Her long, wavy gray hair would be gathered in a bun. I would ask why it took me 20 years to find out about Turner syndrome’s effects on my body. I’d say, “Why was I so scared?”
“We come to things when we are ready,” she’d say.
I’d ask, “How would I live my life differently if I really knew I was whole?”
She would respond with questions: “Don’t you love completely? Aren’t you guided by your passions even when that path is difficult? Do you frame each day in gratitude? Don’t you act generously with loved ones and strangers?”
Then she would say, “Being whole looks like that.”
She might even hold my hands in hers and add, “I love you. Do you know how much I love you?”
Katie Steedly (firstname.lastname@example.org) lived in Washington for seven years. She currently lives and writes in Cincinnati.
This article appears in the August 2013 issue of The Washingtonian.