IG: teripaaige
Where are you from?
Newcastle, NSW, Australia
Tell me about yourself:
I’m a Psychology and Criminology student who recently purchased her first house, WOO; Along with my husband of course haha! I'm a cat lady and he's a cat man and all we do is try and get through work every day so we can travel and drink as many cocktails as we can. I love my garden, there isn't much of it but I'm starting to fill it with my new passion, garden gnomes - hand-painted by yours truly of course hahaha!
What's your EYE story?
My eye story started the day I entered the world! This is a long story, but that’s only because it has literally taken my whole life to get to this point.
I was born with a very rare skin disorder called Incontinentia Pigmenti (IP), this typically affects the skin, teeth, nails, and of course eyes. It is caused by a mutation of the X chromosome - lucky I’ve got two ;). My parents knew I couldn’t see well and at the age of two they had put in a fair bit of leg work to find me a doctor that would listen including having to deal with a doctor that requested my arms and legs be bound for hours at a time so I could wear a patch over my good eye to correct my “lazy eye”, it's safe to say I screamed down the house.
Eventually, an excellent doctor discovered that I was in fact blind in that eye but had shadow vision. When I turned 16 I started to have pain in my eye causing the most horrific migraines that would cause me to scream in pain. Part of IP is scarring of the skin, although in some cases your internal organs can scar as well, for me my retina was scarred which caused my blindness. The scar had caused trauma to the area and has started to detach over time which left it floating around doing whatever it wanted! And what it apparently wanted was to get stuck over some of the major vessels in my eye. I was given a new drainage system but that wasn't what I wanted, so after 8 years I found a doctor to remove my eye!
What has been the most challenging thing mentally?
Mentally probably just getting through high school. Having all the self-hatred that most self-teens, unfortunately, have mixed with the feeling of “why me” or “why can't I just look normal”. Recovery from the evisceration was also very difficult. I felt so many feelings like sadness, anger, and rage. I wasn't sure I would get through it but when the pain faded it turned out to be the best thing I've ever done.
What has been the most challenging thing physically?
All of the pain! From growing up and having surgeries to my retinal detachment and then evisceration. There's no pain quite like eye pain.
Where are you in your recovery?
I’m approximately 6 months post-evisceration and I've completely healed. I have been so lucky to have minimal setbacks in my recovery and now I feel like I can truly live my life to the fullest; however, I know this is not where my story ends - having your eye removed opens up a whole new world of challenges.