Wow, I just found my speech again. I'd hidden it because frankly it was one of the hardest things I've ever managed to do in my whole life. It was painful, but I've definately grown from it. I've discovered that I can be a "happy" person....which is probably the best thing I could ever hope for. (I appologise that its really long, but I read a couple of the posts and thought that it may help people understand a little bit more about the rollercoaster of a ride through adolescence with CAH)

enjoy..................

I had an amazing teacher recently say to me that "perhaps you are at one of those places in life where you are being forced to think about things. I think we can embrace those times, despite the pain, and grow; or we can run from them, only to have to confront them at some later time."

She was right. We all have times that need our utmost attention. However hard it actually is to ‘get through', it is important that we follow our heart and do what's best.

Our heart might say "no this is not the right time", or it may say "go for it"….But I know and understand that as you live with CAH – or you if have a child with CAH, there are times when we have to make the ‘right' decision.

The ‘right' decision's start as soon as you name your child, as soon as you  put them in pink or blue, as soon as you take them to the doctor because things don't appear right, as soon as the doctor tells you that your child has CAH, as soon as you have to confront surgery, and as soon as you simply let them live a normal healthy life.

At the times when you have these initial decisions to make, many think about them in the context of the here-and-now. But by doing this, sometimes we neglect how our decisions may impede on our future. It's then that we start living with regret.

 There are definitely things I regret about my own decisions, or the decisions that have been made about me. Yet ironically, I wouldn't be the person that I am, had they not been made.

I don't think that I would be as caring as I am, had I not been emotionally traumatized by people that I trusted to keep me safe. Every single genital examination I can remember makes me think about how much it hurts to cause others pain, physically or emotionally. Believe me, it sucks like nothing else I can think of, and I regret that I didn't ever have the capacity to stop them from happening. I suppose there was always a part of me that felt blackmailed or in-debt to the medical world for saving my life. They did so much to save me, so I thought I had to give back my body to them. I had to let doctors learn, but in the process I learnt how to hate myself and the person that I was. Definitely doing that, having that mindset, I regret.

 

I've been asked by mothers quite a few times, how old I was when I got "told" about CAH and surgery.

I can remember exact moment when I got told about surgery. Things like that will never leave your mind. I was nine, and watching an episode of "All Saints". One of the characters had just been discovered to have AIS – Androgen Insensitivity Syndrome - And she'd grown up all her life not knowing that she wasn't really a girl. This moment was definitely one of those times when naïve people can go "ewwww", but this moment turned into one of those times when my mum had to confront what she was dreading, and tell the truth.

The truth hurts, yes it does. I didn't hate my mum for the decision that she made, I didn't let knowing change my conception of who I was at the time. I think that at nine years old it doesn't really mean anything. Genitals, sex, relationships, kids even – don't mean a whole lot to a kid who, for all she cares, is normal.

 It's in adolescence however, that it hits you really hard. It means a lot. And sometimes there are days that you wish you didn't have CAH, or you never got told about surgery.

I am certain that many young ladies with CAH have made the adjustment into adolescence and young adulthood, better than I have. So hopefully, your children will never be forced to go through the incidental things that I've been confronted with, which have all seem to make the concept that "yes you are normal", impossible to believe.

I was at the Symposium held in Melbourne, two or three years ago. On our trip down in the car I decided to bring along some really pointless reading material. In it, was this "100% reality" article about a 17 year old girl with CAH, titled "I was born with a penis and a vagina."

I was angry and really scared by that article. I was angry that somebody had the nerve to tell this girl that this was how she was born. And to make things worse – threaten her with "if you don't take your medication, your penis will grow back". I was angry that CAH was trivialized in such an ‘entertaining' way by stretching the truth. I was angry that all of my friends were talking about it at school. And I was scared that they would find out that I had this same condition.

It's because of peoples reactions like this, that you start to believe that normalcy may never be a reality.

However, normalcy has existed for me. I went to a mainstream school. I have (at times) wonderful friends. I have a loving family. I am very intelligent. I have slept over at my friends houses. I have been on camps in the middle of nowhere without any form of emergency contact. And I hadn't had an Adrenal crisis for over 8 years. I did all this because I made the decision that I wanted to be normal. I didn't want to be this stereotypic girl with CAH. I wanted to be me.

Just choosing to live life as normal as possible is difficult. You're always given reminders that people won't consider that of you. Especially this year, my last year of high school, I've discovered so much about the people that I care about, or those that I thought cared about me.

One thing I advise is that if your daughter ever does Extension English make sure she's not one of the lucky 70 in the state studying the elective "gendered language". It is the most horrible thing I have had to do. It's the most confronting thing I've ever done. Sitting and listening to your boyfriend talk about how people who are born ‘different' should be ‘fixed' – like an animal is desexed. Of how ‘noticeable' people actually think all of it is. "Just think of all of the teasing, if I was like that I'd want to kill myself", was what one boys said. While the girl sitting next to me said "how do you reckon they do fix it miss? She'll never be able to really be a girl – she'll probably have masculine characteristics apart from her genitals"

I sat there, knowing the answer to every question they were asking. I sat there knowing that normalcy will never really 100% and completely exist because of other peoples perceptions of what is normal and what is not. So what, if she's different? She's a person, with feelings, with a heart and that is what matters.

The study of Gendered language has been that stressful that I had my first adrenal crisis in 8 years, over the Christmas break. I'd actually forgotten what it was like. It was peaceful lying there without having enough energy to think about everything. Of not having to think about how I was going to let my boyfriend down lightly, of not having to think about how I was going to get through the next year with my mind still intact, of not having to think about confronting all of my issues. It was a way of running away, only to find everything still waiting for me when I got back.

So yet again, I've made the decision. Except this time, I've made the decision to face my fears, instead of running away from them for the umpteenth time. People know about me and CAH, now. I trusted my teacher enough to tell her that I wasn't coping and why. I told a friend that I needed a friend to stand beside me in my quest to discover who I really am.

It's a step, and what I've learnt is that CAH doesn't really matter to them. I am the one who has made it matter for all these years. It feels like a waste living in the shadows for so long, when I could've been ‘happy'. Really, really happy about who I am, about having CAH, about being a normal girl, about being an individual. This is what I regret most about me. I regret running. Facing your foes is one hell of a task, but living with the regret that there is a way out, is even harder.

___________________________________________________________

Well I think that definately sums it all up. I find it ironic that I voiced how anxious I was about people discovering my secret and my flaws......and then I met some really amazing people (including a boyfriend!). So hmmmm now there's two of us with the same problems....it feels good to know that people can share in your pain - or at least "get it".

Take Care

ANna

Annalise: My speech from the Aust. CAH symposium 1st July 2007 (Dec. 9th, 2007   5:51am)
Susan A.: re: My speech from the Aust. CAH symposium 1st July 2007 (Dec. 21st, 2007   8:34pm)