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The Unspeakable Gift
Comments () | Published August 6, 2013
A writing class led Katie Steedly to confront the emotions—and facts—of life with Turner syndrome. Photograph by Colin McGuire.

The first major procedure during my first full day at NIH was the insertion of a PICC (peripherally inserted central catheter) line—a thin tube that runs under the skin from the arm to the heart. I chose to have the PICC line so as not to be stuck with a needle every time someone needed to draw blood or administer a substance during a test. (Quite a choice.) PICC lines are generally used for the long-term administration of chemotherapy or antibiotics.

I went to the PICC area and signed more papers while someone talked very quickly about what the papers said. Then I was escorted to the sterile room where the line would be inserted. The Today show was on a TV in the corner. I watched a segment about Paris Hilton as they administered a local anesthetic and began to search for a vein.

The nurse, an athletic thirtysomething guy, said, “I’m glad you’re nice. This is the first time I’m doing this, so you might have to be a little patient.” He laughed, and my heart sank, unsure if he was joking.

Inserting the line involved inching a small tube toward my heart. It slithered through the muscles of my upper arm, pointing toward my chest, where blood flowed freely. Centimeter by centimeter, the technician charmed the snake toward its destination. (I felt nothing.) He checked the placement, made sure I was “responding correctly,” explained cleaning procedures, and sent me on my way. The line would remain in for the duration of my stay.

I wandered through corridors and elevators—around silk ferns and muted sofas positioned for comfort and community—trying to find my room. I thought of the direct line to my heart that now existed. If only it were that easy to make way for emotions to move and dance, for the substance of grief and pain to flow in and out, for memories to live and transition to some higher place.

In elevators and waiting rooms, I witnessed the frailty of the human body—bald children with defeated eyes, families speaking in somber codes. I saw a man gently holding his wife’s hand as she rested her head on his shoulder. A child of no more than eight walked up to the reception desk and relayed information with the swagger of a surgeon. He shouldn’t have had to be that smart. I saw old people present file folders the size of encyclopedias to nurses. I saw infants staring at mortality. We were all on the same road, traveling at different speeds.

• • •

On my third day, I had a 3-D cardiac MRI. Like the entrance to a dragon ride at a carnival, the rolling, bed-like platform takes you into the mouth of the beast. I walked into the room, and the nurse—who looked as if she could run a marathon in two hours—asked about buckles or other metal on my clothes. She handed me a headset-like contraption to mitigate the loud noise. I’d be inside the machine for an hour while the doctor administered the test, which would produce a three-dimensional movie of my heart’s activity. The doctor arrived and the procedure began. The sound of the machine was deafening, and I seemed to lie there forever.

The movie my heart produced—part video game, part Discovery Channel—was brief. I saw my heart beating on a small screen. Muscles moved with the fluidity of a ballet dancer. Blood flowed like a river. Valves opened and closed as elegantly as a bird’s wings. The components of my heart worked together in such a way that I left convinced of a God. The experience of seeing a 3-D film of my heart was intimate and distant, natural and artificial.

The cardiac MRI was one of many tests focused on my heart. The heart is one of the primary organs affected by Turner syndrome, so it received a thorough evaluation. The knowledge that this organ would get a tremendous amount of attention was one of the primary reasons I’d been scared to participate in the study, but I knew I needed to do it. Every inch of the grand muscle was checked for shape, strength, and function.

I had lived my entire life not knowing my heart. Finishing a marathon seven years earlier hadn’t convinced me it was healthy. My family history of cardiac disease surrounded my heart in a shroud. I can’t describe the relief on the face of the technician who broke the rules (only doctors are supposed to reveal test results) and told me my aorta had fully functioning valves or the affirming nod by another one who read my EKG. I can only say a weight in me was lifted with each revelation. Textbook pictures of malformed hearts no longer matched mine. The premature deaths of family members were countered with each piece of positive evidence.

• • •

On my third afternoon, I reported to radiology for a pelvic ultrasound. Pregnant friends had described this test and shared black-and-white images of life as it grew inside them, so I went in knowing a little about what to expect. The technician, a stern woman, instructed me to take off my shirt and pants and put on the gown. I sat on a bed and watched her prepare the jelly that had been warming in a toaster-oven-like appliance. I was truly excited. She asked me to lie down and moved my gown to the side.

The technician rubbed the warm substance across my belly and moved a small implement firmly over me from left to right. I watched her slow, steady hands and thought about the fact that I now shared something with friends who were mothers. For a moment, I felt as if I were joining the sorority of women who could have babies.

She gently pushed the instrument, and I prayed that things could be different. On the screen, I saw a large, empty space that I think was my uterus. The technician said, “The doctors will provide analysis of the images later.”

Happiness turned to grief as I contemplated the truth this test would likely confirm: the scar-tissue ovaries that had been revealed years earlier. The test ended, and the technician left. I wiped off my stomach and dried my eyes. I lay on the table for a few minutes, thinking about how different this experience was for most others.

How do I negotiate being fully female but somehow not? I felt as though a fundamental choice—the decision whether to have children—had been taken from me. I never got to weigh the pros and cons, dream about baby names, or anticipate pointy elbows and knees protruding from beneath exhausted ribs.

My diagnosis had forced me to approach the question of children not as an easy assumption but as a challenge I’d confront later—when technology would make pregnancy possible or adoption would bring children into my life.

As I sat in that room, the issue no longer swirled in my head as an abstract concept to contemplate in the future. A visceral grief settled in my bones. I lay there breathing and crying, hearing the deafening silence. I was cold and lonely. Emotionally bare, I prayed to understand how I could love myself if I was never a mother. I prayed to be whole, to feel the grief that I had buried for so long.

Somehow I gathered myself enough to put my clothes on and move on to the next test. To say I found resolution would be a lie. I still struggle with the feelings that surfaced in that room every time I consider motherhood.


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  • Sara Baker

    Beautiful and brave.

  • Mark Hohmann

    Excellent article: honesty, fearless and about the one thing in life that really matters.

  • Jim

    One of the best articles I've read in a long time.

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Posted at 12:30 PM/ET, 08/06/2013 RSS | Print | Permalink | Comments () | Articles