Who Owns the Story?


“My endocrinologist says I have a 4 percent risk of fracture on the hips and a 2 percent risk of fracture in the spine. S/he was only able to calculate my fracture score based on someone at age 40, so it is only downhill from here” Around and around on the therapy-go-around for another week, another session with a psychotherapist. “S/he did not recommend treatment, though. It causes a softening of the jaw … and the rest of the body does not even build up bones…or it does but the bones are so brittle, they are all but useless.”

Breathe. That was easier said than done. I knew my life wasn’t bound to be over anytime soon, so why was I in shock and awe, all hot and bothered, when I put on my big girl pants and got (most) areas of my life straight.

“Why are you so concerned about your bones snapping? You just told me that your risk of fracture is very low, you do not need treatment. Why do you keep worrying that you will become paralyzed?”

I was irate. “You do not understand! My progesterone is depleted. My estrogen is depleted. Everything is depleted! I am not even a real female, not genetically. I do not even have real periods, all I have is birth control withdrawal, and even that was not enough to prevent my osteoporosis.” By now I was in tears.

“But you take good care of yourself. You eat healthy. You have a good team of doctors taking care of you. You sent me a list of all of the transactions from your insurance company of all of the blood work and exams you had. It was a lot. I saw it as way of you telling me that you are taking care of yourself.”

“You do not get it. Everything I try to keep my body together fails, it is a constant fight and I am fighting it alone without friends and family. You know Dave Mustaine from the band Megadeth? He said in his memoir that James Hetfield of Metallica told him that he was born with a horseshoe inside. The thing about being born with a piece of metal lodged inside he said is that it hurts like you would not believe … and you always know it is there. That is what Turner syndrome is.”

“Now that you put it that way, I do understand much better what you must be going through and why it constantly stays in your thoughts and why it is so painful for you.”

“You do?”

“Yes, Ashley, I do. I do not have Turner syndrome, but see how your health has been a constant battle, and how it makes you feel like others can not relate to you and why you would resort to pushing others away and distrusting them like you have me.”

“Yes! It is like what anthropologist Ernest Becker talked about in his book The Denial of Death … except for me, there is this constant idea of death, of always being frail and fragile, I am not really human. Now you see why I am so hostile towards other people, have little patience for them. I am still a virgin, I have not had sex and I am in my late twenties. I feel like a freak even though no one looks at me and sees Turner syndrome, to them, I am just another chick.

I am average adult height and had to go through so much to get there—10 years of growth hormone injections every night. 10 years! People do not understand me, they could not be me even if they wanted to. They could not survive one day as me. I know I am not a freak. I know too that being unique—or 1 in a million, literally, if you count all of the spontaneous abortions of fetus never growing to term that would have had Turner syndrome—means being unique, not superior.”

“Why are you so focused on all of this? You need all of these people to understand you and have all of this pride for going through so much when in reality, the more accepting of yourself you are, the less acceptance you will need from others. You have a lot that is going right in your life. I am not trying to diminish anything that you have gone through—and you have gone through a lot. But you also need to give credit also to what is going right.”

“But none of that matters when I am just a ghost. Everyone is so absorbed in their own lives, I am just a story.”

“Being a story is fine. I have done a lot to communicate to you in many ways that you are more than just a story or machine to me. I think you know how special you are, even if you did not have Turner syndrome.”

“Yeah, I know. My suffering does not matter in the grand scheme of things. I guess the best we can do is suffer for something instead of suffering for nothing. People tell me I am interesting and have a good story, but I want to be real, not a story of someone diagnosed with a rare genetic condition. And I know that stories are the reason why we love movies, books, all of that…every song is telling a story, too. I think I do not care about the stories of others because mine does not matter.”

“You do not have to be defined by what others say.”

“I know, and someone told me once that Turner syndrome is part of who I am, I cannot just outright deny it either. I am not special, and yet I am special and so are you, and there is the paradox, right? We are special but we are not. The odds against any of us being born are stacked against us.”

I am now twenty-nine years old. I had not, until the summer of 2017, visited an endocrinologist for a medical evaluation for Turner syndrome in over a decade. I was diagnosed at birth (re-diagnosed in adulthood, even if the geneticist was a bit curious given that I am average adult height) so I already knew what to expect with the territory, more or less.

It is not that I have trouble accepting myself. The hard part is determining my story in spite of—and perhaps because of—the experiences I have had in life, including Turner syndrome. I could mention all of the ear infections, frozen trips to Anchorage, Alaska those few years to see a geneticist, or how I did not have full-fledged conversations until age 3.

Or, how I was bullied constantly in grade school, constantly worried my mother with my health, and never quite saw myself as one of the other kids in class. But there is no point in that, really, because those are events. Events have nothing to do with who and what I actually am. This is a double-edged sword because it would be wrong for me to think that Turner syndrome is not part of my life or identity.

I decided to take control of my story; otherwise, others will continue to try and determine my story. Stories turn objects into subjects by bringing the character of the story to life. I play electric rhythm guitar and sing, thanks to the help of very talented teachers. In addition to earning a Ph. D., I am halfway finished with my MBA. I publish in peer reviewed academic journals, enjoy ice cream and good films, and read for pleasure.

None of my interests have anything to do with a chromosome deletion or a diagnosis. They have nothing to do with what anyone else says about me or thinks about me. Philosopher Alan Watts once said something along the lines that the point of life is to enjoy the dance. The point of dancing is not getting to a certain point on the floor, as he said, or how fast we groove.

I have to remind myself every day that my trials and hardships do not make me better than anyone else or even more special than others. If anything, the experience of Turner syndrome reminds me of how precarious life can be and that the burden is on me, not a medical diagnostic manual or a professional’s decision, to determine my identity.

If you were to walk up to me on the street and ask me to tell you about myself, Turner syndrome would not be a buzzword that would come up. I am something having a human experience (at the shallow end of the gene pool, mind you, but that does not mean that I am not human or having a human life). I relate to others through common interests and like minded hopes, dreams, and desires that are universal.

“I do not agree with Mustaine, that what we are born with always hurts us,“ my mentor Dr. Sandy Sela-Smith told me. “We can discover how to remove the metaphoric horseshoes, and we can learn to discover what the horseshoes came to teach us, changing their role as pain-giver to a new role of supporting us to find out how to heal the pain.”

Learn what Turner syndrome exists to teach you.

Own your story. “Be humble, for you are made of Earth. Be noble, for you are made of stars”, as the Serbian proverb goes.

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advance knowledge, facilitate research, and support all those touched by Turner syndrome.

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