Thru Kitty Barry’s Eyes – How I am dealing with Retinitis Pigmentosa
My name is Kitty Barry and this is my story so far…
I was diagnosed with Retinitis Pigmentosa (RP) when I was six. They told me I’d be blind by 13. It was a very bad day.
On my 13th birthday I gazed up at the roof of the Sistine Chapel in Vatican City. It was incredible.
At 15 I was diagnosed legally blind. It wasn’t a good day but I wasn’t blind yet either so I tried to look on the bright side.
After finishing school I traveled, went to university and married Sir C. It was amazing.
In the early 2000’s I had cataract surgery. On day two I took off the pirate patch. My vision was blurry…permanently. Nuts.
A few years later we were thinking about starting a family. Dr. said the risks were high. The pressure of pregnancy can decrease vision in patients with RP. We weighed the risks and went ahead anyway. The ultrasound showed two tiny heartbeats. It was magical.
In 2010 A1 & A2 were born. My vision was stable and remained so for the next six years. A miracle.
While they were in prep we took the girls to Disneyland. It was amazing but my vision was terrible. Seemingly overnight I’d started walking into people, poles and doors. Those were difficult days.
On our return I saw my specialist. I had some field and pressure tests done. The news wasn’t good, my vision had deteriorated to 2%. That night I cried. A lot.
A few weeks later I walked into an open window and gave myself a blood nose. It wasn’t bad but I knew I had to do something.
The next day I summoned my courage and called Guide Dogs. I asked for help. I’d put the phone call off for a long time. I finally felt relieved.
Over the next few months I worked with Ms V, an O & M instructor. She was brilliant.
On the very first day I was publicly going to use my cane (Wander) to walk A1 & A2 to school I stood frozen at the front door. I couldn’t move. I was so terrified. I was about to be the odd one out, the woman with a disability even though I’d lived with it my entire life. I was so afraid.
And then…I stepped out. I put one foot in front of the other again and again until we got to school. I swear I held my breath the entire time. I won’t lie, I did get the oddstrange look, but I’d been a closeted vision impaired person for 32 years so what did I expect? Once the scene played out and I returned to school using Wander everyday the surprise wore off and things settled into a new sort of normal. It was hard but I haven’t fallen or walked into a window, pole or door since and that’s pretty awesome.
I was back at the specialist in June. I have a cataract growing in my good eye. Nuts. It’s shaped like a star fish so I guess I can’t complain too much.
After being on the waiting list for 7 months I finally got a call from Guide Dogs. They have found me a match! Meet Misty. Isn’t she beautiful?
I leave for Guide Dog camp on Monday. It’s a three week camp and I only get to see Sir C and the girls on weekends. I’m nervous and excited. But mostly I’m hopeful. Hopeful that my story will reach others out there going through things that are tough and don’t get spoken about as much as they should.
I want to share my story with you so you know that you can do it too. You can find the courage you need to get through, whatever it is.
You made it to the end, high five!
Thanks for sticking around.I’m sure they’ll be many adventures to come.
Lots of love Kitty & Misty xx
Follow me: Kitty Barry and her Guide Dog Misty
