Carly Findlay

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Reflections on turning 40

December 24, 2021 Carly Findlay Leave a Comment

CW: ableism, eugenics – but a happy ending

Images: three photos of when I was born – in 1981. One is me close up, a tiny baby with red skim. One is my mum holding me. And one is my dad holding me.

I felt reflective earlier in the month – thinking about turning 40.

Forty seemed ancient when I was little. Dad used to say, “you’ll still be my baby when you’re 40”. He called me today and said I’m still his baby. He told me how strange it was when I was born – that I was whisked out of his arms quickly, placed in a humidi-crib, and that the doctors hadn’t seen anything like me before. Ichthyosis was rare, it still is (probably even rarer with pre-natal screening).

Forty seemed unlikely when my parents were told that I wouldn’t survive many months. Forty seemed unlikely when I experienced fear, teasing and discrimination from a very early age. Happiness and self love seemed unlikely when I just wanted to change my skin to fit in. A career that I enjoyed and was good at seemed impossible with all the low expectations within workplaces of my 20s and early 30s.

Something shifted at 30. I found myself, and what I wanted to be. I found disability as an identity and culture. I found community. I realised it was others’ ableist perceptions of me holding me back. And I defied those.

The last ten years have seen me thrive – I am so happy and self assured. I love work and I love my friends and family. It’s much easier to love myself than to hate myself, as I did for years.

I congratulate every new parent on the birth of their child with ichthyosis – I never offer sympathy or apologies, like the many messages they will receive (in good faith of course). I tell them that life will be hard, but it will be amazing. Because I am proof of that.

I never saw my parents grieve for a life they could have had, with a child without ichthyosis. They never grieved over me. I only ever experienced them giving me the best life possible. I have no doubt that their choice to move to Australia to live a more free life shaped that. I’m so thankful to them, and to everyone who has helped me get to 40.

Life with Ichthyosis can be ordinary and extraordinary. My parents never told me otherwise.

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Copyright

The material on Tune into Radio Carly is copyright. The writing in this blog is by Carly Findlay unless otherwise stated. Most photos in this blog are by Carly Findlay unless otherwise stated. Please do not reproduce without permission from Carly Findlay. This blog represents my personal opinions and experiences. It does not reflect those of my employers'. The information I provide about ichthyosis is mostly based on personal experiences. Please seek medical advice or counseling before trying any new treatments I've written about. Where stared, I use affiliate links on this blog. By clicking them, I receive a small percentage of the purchase.

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