Showing posts with label Androgen Insensitivity Syndrome. Show all posts
Showing posts with label Androgen Insensitivity Syndrome. Show all posts

Tuesday, August 25, 2015

Read Our Intersex Stories in the Narrative Inquiry in Bioethics

The new edition of Narrative Inquiry in Bioethics, Volume 5, Number 2, Summer 2015 issue is out and is viewable online on Project Muse. This summer journal is a Narrative Symposium on Intersex, with an introduction written by Dr. Georgiann Davis titled, Normalizing Intersex: The Transformative Power of Stories. 

The journal includes our intersex stories to help those in the health industry, doctors and those in the medical profession, to learn to make better decisions, responsibly and compassionately, in their treatment of human lives. I hope my story helps.

 My story, The Secret Inside Me, is also included. 

You can follow this link to read the abstracts or to purchase/download
 the journal: click here ------> NIB Journal

This is a screenshot/example of the journal. 






Orchids are all around you!


****THANK YOU FOR BEING AN ALLY****

Sunday, September 28, 2014

CHECK OUT THE NEW AIS/DSD ORG WEBSITE!

CHECK OUT THE NEW AIS/DSD WEBSITE!

Sign up to get updates on conferences, read our stories, get parent, peer, and youth support, learn about Androgen Insensitivity Syndrome 
and other intersex conditions. 
Educate and advocate! 
Click here for  AIS/DSD Organization Link

ORCHIDS ARE EVERYWHERE!

Here I am proudly wearing my AIS-DSD Support Group orchid t-shirt!
Thank you for your support!

Wednesday, January 29, 2014

Love & Pancakes: Being Intersex, a Day in the Life.

A cute story about my husband 
and my intersex condition, 
Complete Androgen Sensitivity Syndrome (CAIS). 
Seriously, it's a cute story.


As mentioned in my previous blog posts, The Secret Inside Meand The Secret Inside Me, Part 2: Feeling Shame, I didn't find out about my AIS condition until I was 35 years old. Although I had my undescended testes removed (gonadectomy/ orchidectomy) when I was 18-years old, back then, I was only told by the doctor, geneticist, and my parents that I was going to have a "radical hysterectomy" or I would die of cancer. (You can read all about that in the two above links.) 

All through high school I begged my mother to please take me to a doctor because I was convinced something was wrong because I had not started my period. She told me I was still too young, that I was a virgin, and she did not want me to be examined "down there" until I was 18 years old. I made her promise to come with me to a doctor when I turned 18. A week before high school graduation I made a doctor's appointment with a local OB/GYN, scheduling it a few days after my 18th birthday.

My mom was holding my hand in the examination room. The doctor walked in and introduced himself to us. (I had found him in the phone book.) I put my feet in the stirrups as he instructed and he lubed up his gloved fingers. The first thing he said -- in a surprised manner -- was "What?! There's no cervix! There isn't anything!" My mom and I looked at each other like, "Wha?" He then took his gloves off and said, "Please get dressed and the nurse will lead you into my office. We need to talk." When he left the room my mom began to cry and I was stunned at his words so I just hugged her and told her it would be all right. The first thing he said to us in his office was, "You need to have surgery immediately or you will die of cancer." It was all a blur after that.  He said he made an appointment for both my parents to take me to a genetic counselor and gave my mother the information. I was quiet and in shock. My mom cried silently to herself as I drove home. I really don't know how I was able to drive and did not remember driving us home. From the two blog posts mentioned above you will read that my parents were eventually told the truth about my "syndrome" but were advised by the doctors not to tell me. So they didn't. "For [my] own well-being."

After the so-called "hysterectomy" aka "mystery surgery" I suffered deep depression and I took the semester of my first year of college off and never left the house. I burrowed myself at home and turned somewhat agoraphobic and refused to leave home in my depression. I eventually went to community college because I was basically disinterested in school and had to figure out what I wanted to do with my life. I was 19-years old. My doctor had told my parents about dilators to stretch out my blind-ending vagina but at that time (after my surgery) they said I was a virgin and didn't want me dilating "down there." That is what my crotch was referred to back then, "down there." 

When I was 20-years old I entered university and it was all kind of a blur but decided to study hard and forget about all the crap about my feeling shame and feeling like something was wrong with me. I told myself to "snap out of it!" Back then I never considered counseling nor did my parents ever suggested anything like that.

Anyway, I met my amazing and loving husband at the university campus. We immediately fell in love. It happened so fast that he proposed to me two weeks after he met me. We hadn't had sex. When he asked me to marry him the first thing that I thought in my head was, "Uh-oh, if I say yes then I have to tell him I can't have kids." I did not know at the time that I was a genetic male or about AIS except that I was unable to have kids. 

Of course, I fell in love too, and wondered at how lucky I was that someone would even love me. I immediately said "yes." I did not realize that he would get so excited about marrying me and that all he could talk about was how beautiful our children would be. I was so overwhelmed and terrified. He couldn't wait to get married and have children and start a family. I got scared. He had joined the Marines immediately after high school then he added two more years in the national guard. After that, he began undergraduate school the same year I entered the university. What solidified our relationship was when his father was asking about where my family came from and it turned out my uncle and he had been best friends in the 60's and 70's and had worked together in town and it didn't hurt that they were both veterans who had served in WWII. Small world. It all seemed like "it was meant to be."

As I stated before he proposed to me two weeks after I met him. He kept talking about how great our life would be. He talked about his plans for our life. He was excited about having children and asked me how many I wanted. Yikes! I eventually broke down and cried to him that I couldn't have kids and then showed him my pencil thin surgical scar across my lower abdomen and told him he didn't have to marry me and that we can just be friends. He began tearing up. He was very sweet. We were both sad. I told him to go home and think about what he really wanted and that I couldn't lie to him so I had to tell him the truth of what I knew at the time. (When I play this conversation in my mind, in retrospect, it makes me see it as a dramatic Mexican novela on Telemundo: The tears. The hugs. The sadness. The angst. My self-deprecation. My sacrifice to give up a man I loved because I wanted to be truthful. The stuff of soap operas!) That same night he called me on the phone and told me he didn't care that I could not have children. He couldn't see a life without me and that he loved me so much. He felt in his heart that I was his soul-mate. I felt the same way.

We got married six months later. I was 21 years old and he was 26. We had a beautiful and big wedding in a humble and old little Catholic church and vowed our undying love for better or for worse and all that stuff. Half my home town showed up and we literally had a 3-day wedding celebration.
Fast forward to me at 35-years old. I eventually said enough is enough. All these years of wondering about that surgery when I was 18-years old. My conversation with my sister who is also CAIS who told me all she knew was that we were born with a "syndrome." I eventually got my medical records and learned the name of the syndrome was "Feminizing Testicular Syndrome" and, in the age of the world wide web, finally learned everything about this mysterious syndrome. 

That night, at 2 a.m. I had a huge stack of information that I had read through. At the time, some of the information I did not understand in terms of karyotypes, 46XY, and all the other genetic verbage that was making my head spin. However, I kept digging and researching until I finally understood what I was learning about myself. My medical records were pretty specific since I was constantly referred to as "the affected male." 

In the wee hours afterward I cried. I had to tell my husband, who was asleep in the bedroom on his third dream. Before he had gone to bed he had asked me to make him a great breakfast in the morning and that he wanted pancakes. I promised, then kept on frantically researching on my brand new desktop computer. Anyway, I ran into the bedroom in tears with a stack of paperwork in my hands and tearfully woke him up. He jumped out of bed scared that something had happened. I blurted out the name of the syndrome and that I was "A genetic male!" And then proceeded to ask him if he was going to divorce me. My histrionics were very dramatic. Like a soap opera: the streaming tears, the pleading eyes, the hand wringing, the shaking and sobbing, etc., all on my part. 

He hugged me tight and kissed me. He then wiped the tears from my face and said I was "stuck with [him]." He said he loved me so much that NOTHING (he stressed this emphatically) was ever going to keep us apart. "Not even [my] genetics?" He said, "Fuck that! You think I care about any of that after being married this long?" By then we had been married 14 years. I was relieved and wanted to hug and kiss him all the rest of the wee hours. But then he said, "Now leave me alone to finish my dreams and, DON'T FORGET, you promised to make me pancakes in the morning!"

See, I told you this was a cute story. All the fears were inside of ME. My wonderful husband had nor has he had any issues about my genetics. All the years of feeling ashamed and sad not knowing the real truth about myself was the worst thing, even moreso than the a facts about my AIS.

To date, we have been married for 31 years and he doesn't have any plans yet to trade me for someone else. He's a keeper. I am truly blessed!






Thank you for your support and advocacy!

All rights reserved. Blog posts by Zoltana-of-the-Desert. Permission is required to copy or disburse any content of Zoltana-of-the-Desert. Thank you.

Tuesday, August 13, 2013

Beautiful Orchids

Check out these beautiful orchids 
on my Orchid Pinterest Board
Click Here ----->>> My Orchid Pinterest Board

Also,

Check out my Intersex and 
Gender Issues Pinterest Board
Click Here ----->>> Intersex and Gender Issues



Monday, March 5, 2012

My Interview with Colin Geer, author of "Last Weekend"

My interview with Colin Geer, 
author of "Last Weekend."


This blog post will showcase author, Colin Geer, and the release of his new book titled, “Last Weekend”. The main character, Rachel, is an individual with Androgen Insensitivity Syndrome (AIS).

Androgen Insensitivity Syndrome occurs when an  individual has XY male chromosomes, but the body is unable to respond to androgens (male sex hormones). During prenatal development, an individual with complete AIS (CAIS) will develop female external genitalia, while a person with partial AIS (PAIS) may have external genitalia that appear mainly female, or mainly male, or anything in between.  Because the testes function normally, uterus and fallopian tubes do not develop. The vagina may be of any length, from short to entirely normal. Pubertal development includes feminine appearance of breasts and hip shape. There are neither eggs nor sperm. Stature is often quite tall. In PAIS, there is an increased risk of cancer developing in the testes, so surgical removal is commonly recommended. The risk of cancer development in CAIS is much lower. 
Excerpt from U.S. AIS-DSD Support group http://www.aisdsd.org/

Colin Geer lives with his wife and three children in Surrey, England, where he divides his time between running his graphics company, teaching and writing. Born in Reading, he spent his childhood in Camberley before moving to Hertfordshire where he met his wife at his first teaching position. Moving back ‘home’ to Surrey to work for an old school friend, he was able to look after his mother in her final years and took up serious writing after she died in 2011. He enjoys cooking (a lot!), walking in Scotland, reading and collecting vintage coffee pots. He also has five cats.

 AMAZON LINK

(Click on photo covers (front & back) to enlarge)



“Last Weekend” is currently available for e-book purchase, Amazon Kindle Edition.  Forward written by Margaret Simmonds, AIS Support Group UK.

Tell me about your novel:

Last Weekend tells the story of Rachel, a tall, good looking young woman who works for a small company in Brighton on the south coast of the UK. She is a very private person and something of a mystery to those who know her, particularly because no-one can ever remember her having a relationship despite her looks. Every once in a while one of the guys at work will try to arrange a date, but they are never successful. Her only response to questions about her single status is an often repeated phrase about her not really being ‘girlfriend material’. Those who are particularly observant have noticed her expression change when she thinks no-one is looking – a dark cloud will seem to pass over her usually cheerful face and sadness overtakes her.

Later on we are told about her childhood and the moment when she overhears a furious argument between her parents. That day she discovers a secret that has been kept hidden from her by her parents and doctors. Her father tells her that she is was born with a genetic condition, something called AIS, and he then goes on to tell her exactly what this is and what it means. From that moment on, her life, her view of herself, her thoughts of future boyfriends, marriage, children…  all these change forever and she begins to plan a different life for herself.

We follow Rachel as she decides how she can make a life for herself and indeed if it is even possible for her to have a future given what she now knows. Last Weekend is the love story of a girl who never thought she would ever experience love as she makes one last desperate attempt to find happiness.

What was your source of inspiration for “Last Weekend”?

Hmmmm…  that’s going to be tough to answer. I had the basic idea buzzing around my head for three or four years as I tried to get to sleep at night. It took the death of my mother to kick start me writing and the end result was Last Weekend. I had the end worked out right from the start and I must have run through the scene hundreds of times as I lay awake at night.

With Rachel, I wanted to explore the idea of how and why someone could end up in the position where they look fine to everyone on the outside, yet inside they were crushed, alone and terrified of intimate sexual relationships. I have to be honest and state that in large part, Rachel is autobiographical. I am not intersex but there were a number of significant events and major medical occurrences in my childhood that combined to crush any thoughts I had of finding a relationship. 

By age 25, I had pretty much given up any hope of finding anyone nice enough, noble enough or saintly enough to want to be with me and not run laughing in the opposite direction. Of course, most of these problems were actually completely insignificant and it was my rock bottom self image and low self esteem that was at the root of things. However, at that time I had begun planning my end game - what I might do if things ‘didn’t work out’ (very much as Rachel does) when I accepted a teaching job in the hope that doing something worthwhile might be a workable substitute for love and companionship. I also wondered if it might appease some God somewhere into taking pity on me. Then I met my wife, we became an ‘item’ after a few days and had decided to marry after a month or so. That marked the end of my headaches and the dreaded chest pains and I began my new life, but I always wondered what might have happened if….. I had so many questions. So changing the gender of the protagonist I began to write Last Weekend, and after some soul searching I ‘gave’ Rachel AIS. I didn’t want to at first and there was a time when I gave her other problems to contend with but these made no sense. I knew all along that the little known, rare genetic condition I had read about years earlier would be the motivation behind her actions.

I must state clearly that I am not comparing what happened to me in my youth with what has happened to so many women and girls with AIS. That would be unforgiveable of me, but the thoughts, feelings and emotions I went through seemed to have a resonance with some of the things I knew had happened to those born with AIS. So as I wrote, there were many times when all I had to do was remember an event and let it happen to my dear Rachel instead of me. I won’t tell you which parts of the story are me and which are a combination of research and my imagination – that would be telling! I hope and pray that I have done a reasonable job of telling her story in a sensitive and realistic way.

What help, or advice did you seek out and receive during your process to write the book?

Initially, none at all, but after completing the first draft and having made the decision to ‘give’ Rachel AIS, I knew I would have to find someone with the condition to read the manuscript. Given that women with AIS are often not the easiest people to track down, I contacted the UK AISSG and the wonderful woman who runs the support group, Margaret Simmonds, agreed to read through the story for me. I told her that I would be guided by her advice and that unless she was happy with the end result, it would never be published.  Margaret made some excellent suggestions and after making the changes I began the mammoth task or reviewing and editing the text.

In fact, I had discovered AIS some years earlier while searching for something completely unrelated on the internet. Via an odd set of chance clicks I read about a murder victim who may possibly have had something called ‘AIS’. There was no other information, just three meaningless letters, but I was curious and wanted to know more. Eventually I discovered the Wiki entry for Androgen Insensitivity Syndrome, closely followed by a blog about rare genetic conditions and eventually the UK AISSG. I remember telling my wife about this rare condition that resulted in a female being born although the genes said something different. I think ‘Yes dear’ was her reaction as I remember. There was however, something about AIS that stayed with me and now and then I would wonder what it would be like to meet someone with the condition. I never actually imagined I ever would though. Now I know many wonderful AIS women or Orchids’ as you call them. That’s a lovely name by the way.

What do you hope the reader takes away with them after reading your book?

I hope people will fall in love with Rachel as I did as I wrote about her. I hope they will understand a little of what it’s like to be locked inside your own body, unable to be honest and tell anyone who you really are. I hope they will wonder to themselves, ‘have I ever met someone with AIS without knowing it’? I hope they will see doctors in a new light; not as gods to be blindly obeyed, but flawed individuals who can and do make mistakes. I hope that maybe some medics will think twice about how they deal with sensitive issues in future. I hope that parents will learn to trust in their beautiful AIS daughters and allow them to make informed decisions about their own treatment without the fear and panic that has so often been the case in the past. I want the reader to be in no doubt that Rachel is a woman, indistinguishable from any other. Lastly, I want all ‘Orchids’ to know how amazing they are. Seriously, you don’t really need me to tell you, you just are!

Describe what you learned about AIS affected individuals and why or how they have impacted you?

I don’t know why, but I never thought of AIS women as anything other than…. well, women. Of course, I’m aware that some may view things differently, that some might think of AIS women are ‘pseudo-women’ or as one feminist writer described them, ‘Pantomime Dames’. That is possibly the most appalling, abusive, willfully hurtful epithets I can imagine. The fact that it was coined by a leading feminist commentator must surely make it one of the most appalling acts of betrayal imaginable. She should be thoroughly ashamed of herself, but I suspect her ego is too huge to entertain the idea that she could ever be wrong.

My view of AIS women is based on the love, friendship and trust I have been shown at every turn sisnce writing Last Weekend. It is hard to pick out traits or features that distinguish AIS women from anyone else. I now know tall, short, thin, cuddly, young, mature, stunningly pretty and comfortably mumsy women, and honestly, the only things they have in common is that they are most definitely women and also their strength and resilience.

How they have affected me? A great deal. I suddenly have a set of amazing new friends from all over the world who I talk to on a regular basis. I have also made some true and lasting friendships that I value a great deal. Reading a large number of the personal stories has been one of the hardest things I have had to do. Some of them left me heartbroken, while others were so difficult and emotional that I had to take them in smaller chunks, leaving myself time to calm down before I started again. I have also become very annoyed too. To listen to woman after woman, deeply regretting the (sometimes forced) removal of two of their most precious, vital organs makes me see red. There are some things that AIS does that no-one can change or repair and which are no-one’s fault, like the inability to bear children, but the butchery that has gone on, based on the flimsiest of confused statistics is something that has to change. Hormone Replacement Therapy (HRT) simply cannot replace what nature does perfectly well by itself, and it most certainly can never excuse the blatantly sexist and misogynistic lies that have been peddled for too long.

Do you have a favorite or particularly insightful chapter/scene in the book?

Hmmm. I have lots of favorite moments and I don’t want to give too much of the plot away, but I guess the moment where Rachel sits alone in her flat watching the sun setting on her dreams of happiness was special. It is very sad, but I wanted it to be an intense moment. I hope I did it justice. As she sits alone in despair, she sees her long-cherished ‘imaginary boyfriend’ waving goodbye to her for one last time…. that took me quite a while and a lot of emotional investment to finish.

How long did it take to write your book and to see it come to fruition?

The book went through stages. Phase one was the first draft, and that only took a couple of months, but I would work for hours at a time, ignoring my long suffering wife and my poor children. Then, having found Margaret from the AISSG, and taking on board her suggestions and insights, I spent another couple of months adding, removing and making subtle but vital changes to the text. Then came the never ending editing! I must have read Last Weekend more than twenty times by now, picking up typos, grammatical errors and inconsistencies. I also had three independent readers proof it for me and still there are minor glitches in there. After the number of errors dwindled with each reading I decided to prepare the text for printing while learning how to create ebooks for the Kindle version.  I also made several trips to Brighton to check on details and take photos for the cover. That was fun!

Are you working on another book? If so, can you give us a teaser?

Yes, I am. It’s called ‘Special’ and concerns a young woman who works at a care home for children with severe learning difficulties. She begins to suspect she is either having a nervous breakdown or even worse, that she might be ‘developing’  schizophrenia… and it appears to be ‘getting worse’. The plot contains a lot of interlinking strands and there are some stunning revelations along the way. I have no idea when I’ll finish it though.

Colin has provided an excerpt from Last Weekend which I included below!

Paperback versions of "Last Weekend" are available to order from the AISSG UK website: http://www.aissg.org/

Colin Geer’s Links:

Buy the E-Book from Amazon now:

Like Colin Geer's Facebook page:

EXCERPT FROM "LAST WEEKEND":

A Secret Revealed


When Rachel was fifteen and in the middle of studying for her GCSE exams she returned home from school to find her father’s car unexpectedly in the drive. Normally she would have finished her tea and moved on to telling her mother about her day at school by the time she heard his car in the drive. She walked round the side passage that led to the kitchen door as she had done countless times but as she approached she heard raised voices from inside the house and stopped to listen. Her mother and father were having a blazing row in the kitchen and she crept forwards to eavesdrop. She heard her Mother’s raised voice, shrill and stressed.
‘Peter, you cannot gamble with her life like this. She has to have the operation. I can’t understand how you can be so relaxed about it. You really astonish me sometimes; after all, we are talking about cancer for God’s sake!’
‘Then listen to what I am saying then will you woman! It’s not a gamble for Christ’s sake. This is an unnecessary procedure and shouldn’t be performed in my view. Rachel can be tested regularly and if there is the slightest hint of a problem, surgery can be considered then!’
‘Oh great, so you’d just wait till it’s probably too late and then do something would you? I don’t give a damn about ‘your bloody view’ this is our daughter. For pity’s sake we shouldn’t be taking any risks at all.’
‘Our Daughter?’ Rachel thought as she listened? This was about her!
Her mother sounded close to tears and it was because of some operation and cancer and risk? What was going on and why weren’t they talking to her about it anyway?
She listened quietly, perplexed and worried but aware that this was important – this was obviously a massive secret that she had never been told about. But given that it was so important, why had she been kept in the dark? Was it that bad? Was it really bad... like terminal cancer? She suddenly felt very scared and her heart raced as she stood in silence with her back to the wall.
Her father lowered his tone and started talking in a patronising voice to his wife.
‘Angela, I understand the risks and they are no greater than for many other medical conditions, but we don’t usually start chopping bits off do we’ he said. ‘It’s an hysterical reaction. The operation doesn’t need to be performed and I’m not having my daughter butchered, I’m just not!’
Her father was losing his patience and his voice was faltering as it usually did whenever he became annoyed.

There was brief silence then Rachel heard crockery being knocked together followed by a massive crash.
‘Angela stop it, you’re being ridiculous!’
‘Well if you’re going to destroy everything I thought I’d start first’ her mother said in a silly, childish sort of voice.
‘C’mon Angie, don’t be silly about this. I would never do anything to hurt Rachel, you know that!’
There was silence again, followed by the sound of her mother sobbing.
‘Peter, why us? Why her? Is she cursed? Is it because I am a bad person?’
She heard her father sigh, exasperated by his wife’s reliance on religion but he said nothing, preferring to let things be.

The kitchen seemed to be silent now so Rachel tiptoed forward and peeked round through the glass door and saw her father hugging her mother who was crying. Her father was facing her but was not looking in her direction. He looked very upset as he held her mother. Rachel glanced down and saw a pile of bowls lying smashed on the floor; small fragments strewn all over the tiles. She hated it when her mother had one of her ‘silly’ turns. She made no sense and you couldn’t talk to her sensibly about anything. She often started talking about God and sin and forgiveness which turned Rachel off completely to the point where she just gave up. This time she had obviously been very silly indeed as the smashed crockery proved.

Rachel’s parents hadn’t seen her so she drew back quickly. She crept back up the side way and round to the front of the house and sat on the step, hiding behind the pillar where no-one could see her. She could still hear her parent’s voices but they were muffled and she’d heard enough. She didn’t understand. What was this operation and what was the risk they were talking about and what the fuck was that about chopping bits off? Most importantly, what did this have to do with her and why hadn’t they spoken to her about it if it was that serious? She sat behind the pillar with her knees drawn up, her school bag beside her. Why had her parents never spoken about this before? Whatever it was, it must be pretty awful and she wondered if she going to die. Her mother had talked about things being ‘too late’.... what the hell was that about?  Her heart did a flip and she felt light-headed as she buried her face in her knees feeling very alone. She stayed there for a long time not wanting to go in for fear of being told she didn’t have long to live, but she had no-where else to go. Time passed and Rachel sat, utterly terrified, imagining the worst possible scenarios, deep in despair when the front door suddenly opened. Her mother looked out muttering under her breath, ‘Where are you, you’re not usually this late.’ She suddenly noticed a movement by her feet and saw Rachel huddled in a heap by the door and shouted for her husband.
‘Peter, Peter! It’s Rachel, come quick!’
She bent down to and spoke gently to Rachel. ‘What is it? What’s the matter dear?’
‘PETER! Will you please come here right now, it’s your daughter! You do remember her don’t you?’ There was a bitter, vindictive tone in her mother’s voice that annoyed Rachel even though she was very upset.
‘Am I dying?’ Rachel said tearfully. ‘Tell me. I have the right to know don’t I? Why is Daddy home so early? What’s going on and why were you shouting? If I’m going to die I want to know right now!’ With the last words she sobbed in fear and despair.
Her mother realised that Rachel must have heard the argument. She bent down and hugged Rachel. ‘You’re not going to die Rachel dear’ she cooed unconvincingly.
‘Peter if you don’t come right now I swear….’
‘OK, OK, I was in my office and didn’t hear….’ her father said realising with a shock that it was his daughter who was collapsed on the ground being hugged by his wife. Rachel was helped into the living room and they sat her down on the sofa. Rachel was crying and her mother was sitting next to her, also in tears with her arm around her daughter. Her father squatted in front of Rachel and held her hands.
‘Rachel heard us in the kitchen’ her mother said through her tears. ‘Now she thinks she’s going to die. We have to tell her Peter.’ Rachel instantly looked up at her daddy, tears streaming down her face. ‘Tell me what?’ she said. ‘Daddy, what is it?’
‘Poppet,’ her father said emotion in his voice, ‘we shouldn’t have been arguing, we’re sorry aren’t we Angela?’ and her mother nodded. ‘You’re not going to die Rachel. There is something we should have told you, but we never found the right time. You are a perfectly healthy young woman…. we just didn’t want to worry you and the doctors all agreed that we shouldn’t…..’
‘Well I already am worried so just bloody tell me! Rachel demanded looking at her father.
He scooted back and sat on the coffee table.
‘Angie, make us all a cup of tea could you’ he said in his best bedside voice. That made Rachel worry even more! He only used that voice when things were really bad. She looked at him, waiting for the worst with large round sad eyes.

‘Poppet……’ he said and stalled almost immediately.
‘Poppet this is quite complicated, but you are a sensible girl and I know you will be brave.’
Rachel panicked even more. If she had to be ‘brave’ it just couldn’t be good.
Her father paused and sighed. ‘Rachel, you were born with a condition. You are a very special girl. You are our beautiful daughter, almost a young woman now.’ He faltered again. ‘You remember when you fell off the fence when you were little?’ Rachel nodded. ‘Well, the doctors noticed something…. different with your…… private bits.’
‘You mean my vagina! I know what it’s called daddy!’ Rachel snapped impatiently.
‘Yes, of course I know, yes, sorry poppet. Your vagina’ he said, uncomfortable at using the word in front of his daughter for the first time. ‘Although it was more than just your…. vagina dear.’
Rachel observed her father visibly sink a little as he spoke.
‘The doctors saw something on the scans and X-rays that didn’t look quite right and suggested some tests they thought you should have.’
‘I remember those. That was ages ago. What’s that got to do with me now?’
Her father sighed and paused as he inched slowly towards the crux of the matter.
‘Yes, well, you are a woman now and things are different when you’re a woman’ he said procrastinating, which annoyed Rachel to the point where she clenched her fists and looked ready to explode. ‘Just tell me!’ Rachel shouted, unable to take the waiting any more.
Her father’s face was drained and he looked down at the carpet just as her mother came back in with a tray of tea and biscuits. She busied herself, clinking the cups and saucers annoyingly as she poured the tea. Rachel had had enough. ‘Daddy!’ she yelled, flustering her mother who nearly dropped the teapot.
‘OK, ok’ he said taking a deep breath. ‘Although you are a beautiful young woman, there are some parts of you that are not’ he said and Rachel was more confused than ever. ‘Beautiful, young or a woman? She asked, annoyed that he was trying to be obscure on purpose.
‘You were born without ovaries or a womb and you won’t be able to have children or menstruate’ he said hurriedly as if trying to cram as much into the sentence as possible.
‘So is that why I haven’t got my periods yet?’ Rachel asked putting two and two together.
‘Yes.’
Her mother started to cry and her father got angry again.
‘For God’s sake Angela, that really doesn’t help matters and it worries Rachel!’ he snapped.
Her mother’s face changed and she looked at her husband, fuming as she thumped the teapot down hard on the tray, shaking the cups and saucers.
‘You pig, you absolute bloody pig Peter! How can you be so cruel!’
She then got up and ran upstairs, doors slamming as she went.
Rachel and her father looked at her as she disappeared before returning to what they had been saying.
‘Unfortunately it’s not just the lack of periods Poppet. You were born with a condition. It’s called AIS. Actually you have a form called Complete AIS, which is slightly different, better maybe in some ways’ he said, trying to sound upbeat.
‘And that means what exactly?’ Rachel asked, frustrated.
‘Yes, of course. Well, it stands for Complete Androgen Insensitivity Syndrome.’ There was a long pause before her father could speak again.
‘Rachel, what I’m going to tell you now…. you must listen very carefully and not jump to conclusions…. OK?’
‘OK’ Rachel said nervously.
‘Oh God, how can I put this. You’re genes…. you have an X and a Y chromosome.’ Rachel nodded but was none the wiser.
‘Women have two X chromosomes’ he said and waited for Rachel to catch up. There was a pause. A long pause while she processed the information.
Rachel’s face gradually changed as she realised what her father was actually suggesting.
‘What..... I’m a boy?’ she said at last, horrified.
‘No! Absolutely not. You are a very beautiful girl, it’s just that….’
‘It’s just that I’m really a boy!’ Rachel interrupted.

Rachel’s mother appeared at the door, suitcase in hand looking at them both. She always had a knack of choosing the most inopportune moments and this was certainly one such occasion.
‘I’m going to stay with Peggy for a while. This might all be low risk, run-of-the-mill, everyday stuff to you Peter, but don’t expect me to stay here while you gamble with Rachel’s life. I always told you that this was punishment. It’s your fault for not letting her come to church with me. The Devil finds work for evil hands Peter! Well, I imagine you won’t starve without me. Look after each other.’
And suddenly she was through the already open front door and walking towards her car.
Rachel ran out and begged her mother not to go but she simply threw her bags on the back seat, got in and started the engine. Despite her daughter’s pleas she drove away without looking at either of them. It all happened so fast and so suddenly that Rachel and her father were left stunned as they watched the car speed off down the road almost literally in a cloud of smoke.
Rachel and her father stood looking down the road dumbfounded. She decided to take the initiative so she grabbed her father’s arm and pulled him back to the living room. When he was sitting down again she carried on, needing to know what else she hadn’t been told.

‘So, you were telling me I’m really a boy’ Rachel said looking like she might burst into tears at any moment, her hands shaking with emotion.
‘Yes’ her father said nodding absentmindedly with a frown on his face as he wondered when he would see his wife again. Rachel’s heart missed a beat as she heard her father agree; she was a boy.

He then realised what he’d just said and corrected himself. ‘NO! You’re not a boy. Don’t be ridiculous. You’re a girl, a woman, a beautiful young woman’ ....but it was too late, he’d said it and she’d heard him.
‘With genes that say I’m a boy, right? When will mum be back do you think?’ Rachel said, her mouth wavering.
‘Rachel, please. I need to explain and it’s really not that simple, there are other things you need to know’ he said sounding tired.
‘Oh yes! Like there’s this big ‘risk’ and an operation, oh and I might die. Yes, I overheard most of that.’
She stood waiting for an answer but instead her father suddenly started to cry. She’d never seen him cry; even when he had the Black Dog he had never burst into tears. It was never that kind of ‘upset’. Now he was sobbing in front of her and all of a sudden she was the one who had to do the comforting. She sat down and put her arm around him. ‘I’m sorry daddy’ she said as she dried her eyes on her school jumper. Her father shook his head as if trying to shake the pain away.
‘It’s my fault, all my fault. Your mother had two aunts who never married that no-one ever talked about. They lived on their own and I never even saw them. I always thought it was odd. Why didn’t I realise. I should have checked out what it was all about, just in case. Your mother and I, we should never have…’ but the logical conclusion of that sentence meant he would never have fathered his beautiful daughter and he hunched down low with his head in his hands as she supported him.

Rachel comforted her father and it gave her a strength she hadn’t known before.
‘Daddy, it’s ok’ she said as she held him close, but he was not ready to be comforted and simply shook his head in shame. ‘Rachel,’ he said, pulling himself together a little, ‘there are other things you need to know.’
Rachel wondered how much more there could possibly be, but she nodded anyway.
‘OK’.
‘You asked about the operation….. well, there are certain complications with AIS that you need to know about.’
He looked around as if hoping that someone else would take over.
‘The condition leaves you with internal…… gonads and some people think it’s best for them to be removed. I have looked into this and read as much as I possibly can and I don’t agree. The preferred path is for them to be removed quite soon after puberty. Your mother and I don’t agree on this and…… well, we argue about it sometimes.’
‘Daddy, why didn’t you talk to me? It’s my body and I’ll have to decide what happens to it won’t I?’
Her father looked at her and stroked her face. ‘I’m so sorry Poppet, I really am. Anyway, there are risks either way, but removal means you need hormone injections or pills and they have side effects. There is a small risk that the gonads can develop tumours but it seems like a relatively small risk and removal without a very good reason feels like a massive overreaction to me. There again the girls and women with AIS all have different diagnoses so it’s really hard to say what’s best.’

He seemed about to say more, but stopped, having said quite a lot already and he wanted Rachel to consider what she’d heard, particularly about the gonads. He hoped she wouldn’t make the connection between ‘gonads’ and ‘testicles’ and waited.
Rachel was silent for quite a while and frowned.
‘Dad…. you said I had gonads… that’s slang for testicles isn’t it? At least, that’s what the boys at school call them. Are you saying I have testicles inside me?’ and she held her hand over her stomach.
Her father looked at her, sadness written on his face, wishing desperately he could say no but his eyes answered without the need for words.

Rachel was silent. She got up and looked out of the window shaking, although it was barely visible. The pit of her stomach fell away and as it did, her life as she’d knew it spilled onto the floor in such a mess that she knew she would never be able to re-assemble all the pieces. She stood quietly and tried to think of something…. anything coherent to say.
‘Rachel, this does not mean that you are any less female. You are a beautiful young woman. Rachel please, you must know that. This does not change that one tiny bit.’
He waited but Rachel simply stood still, facing away from him.

‘Daddy, I think I need to go out. I need time to think…… by myself’ Rachel said eventually and in such a flat, toneless voice that her father suspected the worst.
‘Are you sure that’s such a good idea? Maybe you should wait just a bit’ he pleaded. ‘Please don’t go right now. You mother has gone and….’
Rachel listened, but without looking at him and simply shook her head. ‘I’m sorry but I have to. I won’t do anything stupid, I promise’ and they both understood exactly what ‘stupid’ meant under the circumstances.
‘I love you so much Poppet. Mummy does too’ her father said, terrified of what she might do on her own in such a state.
‘Your mother is just frightened, that’s all. She loves you just like I do’ he added, but Rachel was not all that sure about the last point. Her mother had a history of being selfish and unreasonable and Rachel always knew that her relationship with her mother would never be the same as it was with her father.
‘I won’t be long,’ Rachel said quietly as she walked to the front door with her head down, like a ghost. With a click of the latch she was gone.

Rachel’s father stood in the living room alone, terrified of what might happen yet powerless to do anything about it. The two most important people in his life were suddenly absent, both in very emotional states and he wasn’t coping very well. He went to the kitchen and leant over the table clenching his fists. He brought one hand down hard on the table, then again, and again, then with both hands until his fists hurt. He stopped and walked to the back door, arms limp at his sides and went into the garden. ‘We should have told her earlier’ he kept repeating. He sat at the patio table and stared at nothing in a state of shock; fearing that his family had just disintegrated for good. He also felt very guilty. He knew that if this had been someone else’s daughter he might not have been so sympathetic. He felt very uncomfortable knowing that under different circumstances it might have fallen to him to tell another father that his daughter ‘was a boy’ and he might not have been that nice about it either. For a second he wondered if he was being punished by some supreme being and his mood sank even lower. For Rachel’s sake he decided that he had to change and quickly.


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