Tuesday, 18 August 2015

The Other Half of the Story | The Beginning

In order to start this story properly, I have to go back to the beginning. The first beginning. Long before the most memorable day of my life. I was rudely birthed into the world one May in the early 1990s. My mum had chosen a home birth, and I was born in my parents Victorian terrace flat in London. But sometime before that, nine months to quantify it, I lost a chromosome. Or, more accurately, it lost me. I was conceived and born with 45XO, one crucial chromosome having never made it to me during this process. My mum and I joke that it was lost during a particularly strenuous yoga lesson, or on someother such unfortunate occasion.

To get a scientific outlook on the situation, we have to jump forward in time to 2008. I was 16 at the time and sitting in the waiting room of a paediatric endocrinologists clinic. An A level student surrounded by a mass of mewing children, wondering why I hadn't been greeted by 'mother nature', as the Tampax advert so euphemistically puts it. Before I knew it, the most vivid memory in a history of vivid memories performed itself in front of my eyes, in a surreal, outerbody experience way. On 31st October 2008 (I told you it was memorable for me!) I walked into a doctor's office and was told, "well, I've got one half of the story here, and you are the other".

As you can imagine, when I was laughing with my mum over the list of my 'Clare's quirks' to bring to the doctor's, this wasn't quite the answer I had been waiting for. In fact, to tell you the truth, I had been living with my 'quirks' and feelings of alienation for so long that to get an answer in any format was somewhat of an unexpected outcome. You see, it's not that I didn't know deep down that something wasn't right. As a 4 foot 10, socially isolated 16-year-old with dyslexia, I had lived with years of 'wavy line' moments of confusion and anxiety, and was more than aware that I wasn't the Oxford Dictionary definition of 'normal' (is there one?).

That was my reality. My 16-and-a-half years of living undiagnosed with the chromosome condition Turner Syndrome. My life experience up until that point is what I shall claim as 'my half of the story'. The other half of the story sat clenched in my doctor's fist. He held the results of medical tests and notes that revealed the medical side. The short stature, oestrogen deficiency, learning difficulty, flat-chest, low hairline, non-existent ovaries, medical reality of the situation.

I lived with it then, and I live with it now. Because we are more than the sum of our genetics. We are more than medical results. We live with the other side of the story. I did then and I do now choose not to be defined by my genetic condition. I am a human with a destiny and agency of my own. I lived 16 years not labelled or defined by my genetics, just living my side of the story. In some ways that makes the object of diagnosis redundant, except it doesn't. Such a late diagnosis, an experience shared by many TS women, largely down to a lack of medical understanding, can be detrimental to both physical and mental development. And so until that fateful day I was not only 'missing' a vital part of my genetics, but also the salient part of my story.

I may be one chromosome short, but that just makes me human. I am the combination of thousands of genetic variations, flaws and all. Just. Like. You.

Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning.

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