Hi! I am Kat, short for Kathryn Chivers, and I was born with retinitis pigmentosa, a degenerative genetic disease of the retina.
Let me paint a picture for you.
A year or so after the doctor dismissed mum with “tell her to eat her carrots, and she’ll be right”, someone knocked on the door collecting money for research on retinal diseases.
Mum gave them her change, and they gave her a brochure saying, “Hi, my name is Kathy. I am 5 years old, and I am going blind”.
At that time, I went by Kathy, and I was also five years old, so as you can imagine, that doctor received another visit from us!
Soon enough, I was diagnosed with RP.
So growing up, I have had mum in my ear saying, “get out there and see as much as you can, while you still can”, and of course, I have.
- It’s estimated in Australia that one in 3,000 people has RP.
- In addition, 50% of RP patients will have a history of at least one family member being affected, and the other half will not.
- Early symptoms of the RP are night blindness, tunnelling vision, and light sensitivity.
- It’s a debilitating condition that begins in childhood and leads to blindness in patients between 20 and 40
- There are no treatment options besides counselling, but research in this area has recently accelerated.
It’s a good excuse, right?
To not go to uni, get married, have kids, settle down, have a career, a “normal” (boring) life?
Knowing that my sighted days were numbered, I couldn’t live an ordinary, mundane life in the burbs with the same people, doing the same thing at the same places, over and over again.
I needed to see all the things. Do all the things. Feel all the things, just like mum told me. And I did!
By 16, I was working full time, partying full time, driving, travelling, and generally living a full and free life.
By 18, I had already travelled around Australia and to the north island of New Zealand.
Since then, I have been to Japan, Italy, United Arab Emirates, America, Canada, India, and Indonesia. So yes, I visited our closest neighbours last.
From ages 16 to 36, I had independently travelled to eight different countries around the world and lived in Vancouver for three years.
“I needed to see all the things. Do all the things. Feel all the things, just like mum told me. And I did!”
Then, two years after returning from Vancouver, when I was 32, I had cataract surgery.
It was that surgery that was the catalyst for the rapid decline of my disease, and within three years of that surgery, I surrendered my driver’s license. I was deemed legally blind in both eyes by Professor Constable at Lions Eye Institute.
Although the diagnosis initiated a disability pension and NDIS funding, I was not a woman with a disability.
Instead, I was a strong, hyper-independent woman who could do whatever she wanted, whenever she wanted, with whoever she wanted. Right?
Within a few months, I found myself curled in a ball of anxiety and panic at the front door of my house, unable to go to work.
I was a parts interpreter for Toyota then, so it was 9 hours of fast-paced, high-stress computer work daily.
I was getting migraines that lasted weeks, crying for hours every night in the shower, deep in a hole I knew I couldn’t get out of alone.
Then, the universe came to my rescue.
Gavyn and I had booked a three-week holiday in Europe to attend his cousin’s wedding, but the pre-start bill on the house we had just finished building in South Guildford meant we weren’t going anywhere.
The same three weeks we had booked off work were the same three weeks my local yoga studio was running their first yoga teacher training.
I had wanted to be a yoga teacher since the first class I attended in Vancouver in 2012, and if this divine timing wasn’t enough of a universal push in the right direction, then I don’t know what is!
I did the training, quit my job at Toyota, and started teaching classes from the conveniently sizeable back room of the new house we had just built.
And it worked!
Since then, I’ve rolled with the highs and lows of small biz, and here I stand today.
My life is not what I had in mind for myself, even though I’ve always been aware of my condition.
I expected to be that hyper-independent, strong, and inspiring young woman forever.
And yes, I still get to be strong and inspiring, but I can’t do it alone.
Instead, I now have a team of people helping me “do life”
Over the last six or so years that I’ve been seeing my psychologist, I’ve leant that forcing positivity rather than allowing grief to come to the surface is a surefire way to cultivate anxiety and panic attacks. I know now that on the other side of grief is peace and pride, and the only way to get there is straight through its guts. Uncomfortable, but oh so worth it.
I have taught yoga, run medicine drum workshops, sound healing events, day retreats, meditation, and all things self-care and well-being. I hope to spend the next few years upskilling and growing, so I can continue show others that life can still be lived with a diagnosis.
3 thoughts on “Living with a genetic eye disease – Retinitis Pigmentosa”
Beautiful read
Kat, I took a few classes with you years back and your energy struck a cord – you made a lasting impression!
This is so lovely to hear- thank you so much! xx