Anna Maria's Story

[Received April 2005]

This is incredible. Reading all these stories from the hearts of special-XY’s, filled me with joy and sadness that there are so many others like me. Until recently I thought I’m a once-in-a-thousand-years-medical-freak. I assumed this world comprises males, females and me. It changed when a medical specialist, with the rare gift of an honest and understanding heart, explained my condition to me and added: You’re in good company, a famous actress also has XY chromosomes. Well, that made two of us. So, I thought, there may be even more of us.

This morning I woke up at 3 am and to not disturb the dark and quiet house, I decided to do some peaceful filing. An unopened white envelope contained a letter from the specialist to my GP and the letter contained something I’ve been searching for for seventeen years: a medical term. I googled the term ‘gonadal dysgenesis’ and Alladin’s cave opened up. The internet spit out hundreds of amazing articles that describe me. And finally I clicked onto your web-site.

It is an exhilarating catharsis to open up the dark secret of my heart. Maybe it will bring healing and self-acceptance. Maybe it will even give me the strength to face the world’s rejection. I love these stories because I identify with people like me. I can not blame outsiders for not identifying with us.

Sixteen years ago, at the age of nineteen, I was rushed into an emergency gonadectomy. The previous day I was a healthy, active, intelligent student. And there I lay in a cold hospital bed, with every fibre in my body and being screaming out in pain. They cut open my body and ripped out an organ, my dreams of motherhood and my sexual identity. And I missed it so much. I had to know why and started to scour libraries and encyclopedias, but nothing made sense. My inquisitive nature refused to accept the self-ignorance. Eventually I forced the gynaecologist to tell me the true nature of the mysterious ‘chromosomal disorder’. He explained to me that my parents forbid him to tell me the truth. He gave me the medical report that they wanted to protect me from. His fingers pointed clumsily to the two letters: XY. Why? Why did he show me? Ignorance is bliss! It catapulted me into sixteen years of emotional turmoil.

Secrecy is a common theme in the life stories. Secrecy and the truth are both double edged swords. They each protect and hurt in their own ways. The eyes of the world are so cruel. They love to look deeply at your shame, until they can turn you into a freak. Through the years I’ve slowly and selectively allowed people in. But it’s a risk every time.

In the past year the need for an egg donor forced me to start telling people I don’t have ovaries. I can say it without anyone seeing any tears, but they always burn just beneath my eyelids. And every time I can feel God’s love holding my trembling heart in place. Miraculously I’m still alive, because on so many occasions the loneliness felt almost unbearable.

But I know I’m the lucky one in so many ways, because I take nothing for granted anymore. Life is fragile and what we have is only grace – we don’t deserve it, we don’t own it, it’s on loan. And while we have, we can enjoy it. That’s what I remind myself of when my jealous eyes start to browse what life did not give me.

I live in Sydney, Australia and would like to use the pseudonym Anna Maria.