Figure and Ground: Perceptions of Living with Turner Syndrome

blog series with Katie Steedly curling

Katie Steedly Curling, PhD, writer, and guest blogger for the Turner Syndrome describes her perceptions of living with Turner Syndrome throughout her life using the concept of figure and ground. Our perceptions of our experiences, including living with Turner Syndrome, are always unique, individual, and important. Her hope is that by exploring her perceptions and experience, readers will deeply consider their own perceptions and experience and come to greater understanding of how Turner Syndrome fits into the whole experience of our lives.

The Concept of Figure and Ground

Figure-ground perception refers to the tendency of the visual system to simplify a scene into the main object that we are looking at (the figure) and everything else that forms the background (or ground). The concept of figure-ground perception is often illustrated with the classic “faces or vases” illusion, also known as the Rubin vase.

Figure-Ground Perception in Psychology, Kendra Cherry,
Rubin vase

The concept of figure and ground has always fascinated me; I have always seen the both the vase and the face. Visual artists turn figure and ground on its ear in the pursuit of challenging our perceptions of the world. Composers create music that moves in and through figure and ground in a playful take on harmony and dissonance. Playwrights use dialogue to explore the figure and ground of relationships. Our eyes and ears and hearts dance between figure and ground every day as we move through life. As a woman with Turner Syndrome, I have often reflected on how these concepts of my perception of living with the condition throughout my life.

My Perception Upon Diagnosis

Turner Syndrome has been both figure and ground in my life. After my diagnosis at the age of 15, it became “ground”–or foundation–for my choices. In a state of complete denial, other than the medical necessities such as frequent doctor visits, hormone replacement therapy, blood draws, and bone scans, I was a typical teenager. The “figure” of my life at that point was driving, working at a pizza restaurant, high school theater, and hanging out. I never talked about Tuner Syndrome. After I read a few things my endocrinologist suggested, I did not look any further. I was scared to death of what they said I looked like and would (or would not) become. I allowed my condition to stay the “ground” of my life. To learn I was infertile at 15 removed the figure of a future of easily achieved biological motherhood from my sight at an early age.

My Perception As a Young Adult

Turner Syndrome remained my “ground” as a young adult. I still never talked about it, except annually with my gynecologist, and with a few boyfriends when the discussion of wanting to have families would come up. If I trusted them enough to tell them, I would. Most of the time, I would just skip the Turner Syndrome conversation, choosing to simply not enter into an educational opportunity that would expose something so personal. I wanted to be normal and was not sure what that would look like if people knew.

Educating doctors was another way Turner Syndrome became “figure” in my life during this time. Most doctors don’t know much about the condition. The questions generally started after I revealed I was on hormone replacement therapy. I saw the same gynecologist for 30 years, the same one I had when I was diagnosed, so I would not have to explain. It was the other doctors who looked at me sideways: the ER doctor I saw after a car accident, the doctor in the campus medical center who prescribed an antibiotic for bronchitis. I always thought they should already know about Turner Syndrome, but I guess doctors learn an encyclopedia of genetic syndromes in medical school, and it is hard to keep all of them straight.

Turner Syndrome As Figure and Ground

At 36, Turner Syndrome finally became a “figure” in my life. Finishing a PhD did not convince me I was smart. Finishing a marathon did not convince me I was healthy. After I wrote about my diagnosis in a writing class, I decided to participate in an NIH study. The study made it clear Turner Syndrome had been both figure and ground in my life the entire time. The study, and my subsequent essay about the experience, changed my life. The silence had been broken.

Figure and ground depend on each other; one cannot exist without the other. They dance together, they are the tapestry, they are the symphony. Turner Syndrome was “ground” in my life when I wanted to protect myself from pain, when I wanted to be normal, when I did not have the words to talk about life and death. That conversation is what ultimately happens when we discuss the honest truth of a genetic condition. Turner Syndrome became “figure” in my life when I found the strength to not let the diagnosis, prognosis, and statistics define who I was and what I might become. It became “figure” in my life when I learned to love myself–all of myself, and when I realized that our stories are as vital to our existence as our breath.

See the TSF website for more information on living with Turner Syndrome. To read more personal stories about living with Turner Syndrome, see our blog.

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