Individuality: Living with Turner Syndrome

Following a path different from that of other people can seem unwise. Individuality is difficult to maintain in the face of social and economic necessity. Difference often induces fear. Society often values conformity over individuality and loses the contributions of people who do not color inside the lines. It is often easier to ignore your individuality than to embrace it.

While I am thinking about individuality and reflecting on the idea of being yourself, I am thinking of how I valued the qualities of imaginativeness and thoughtfulness I had when I was young.

I wanted to be artistic. I wrote poetry and participated in theater in school and in a community theater group. I wanted to be true to myself, and not pretend to like things that I did not really like. Writing and creating were important to me. My uniqueness made me imaginative, but it also made things hard for me with other children at school. Something set me apart, but I did not know what.

Making the effort to embrace my individuality was my way of coping with a condition called Turner Syndrome that I was born with. Turner is a condition present in females, where a woman is born without both X chromosomes. One of the characteristics is short stature. My short stature set me apart, but I did not fret over it. I am what doctors call a mosaic, and I thought that being a mosaic sounded poetic.

As I got older, being different led to ostracism. The pain of apartness led to ambivalence about my own identity. My father saw that I was in pain and told me about Thoreau’s “different drummer” to reassure me. Years later, when I was a teenager, my short stature and my way of living in my imagination had caused me so much difficulty that he contradicted what he had said before, and would caution me not to be like the solider who believed everyone else was out of step except himself.

My pride in being different was almost defiant, but as I got older I started to realize that I was more different from my peers than I had thought, and that I could not change the things about me that made me different. I tried to conform and I did not develop my writing. I did not allow myself to be me, and in doing so I hindered my own growth.

Now I realize that I cannot continue to view what makes me an individual as negative. Embracing what makes me different is hard, and probably always will be. I think having Turner Syndrome and having to cope with being short has taught me patience and compassion. Parents and teachers need to value individuality in a child.

Encouraging individuality allows people to develop their gifts and contribute. Sameness in a species often means extinction, while the ability to adapt to new conditions and to develop new traits can help a species survive. The person who marches to the beat of a different drummer has much to contribute to the music of life.