Recently, I have become more active in Facebook Groups. It is a great way to create awareness about an issue or cause — in my case that’s a rare condition called Retinitis Pigmentasa (RP).
RP is an inherited, degenerative eye disease that can lead to severe vision impairment and even blindness. Through a group dedicated to RP, I met a woman named Katey Duppong from Kuna, Idaho. Like me, Katey has RP. I was instantly intrigued by Katey because she makes and sells funny t-shirts that shed light and humor on RP.
Katey is a busy woman. She is finishing up college and starting an early childhood learning center. She also has a small business selling products to support RP. She was kind enough to answer some questions for me. She deals with her condition head on; nothing scares her… well, so long as she cannot see it.
When were you diagnosed with RP?
All my life we’ve known that I’ve had RP, but I was “officially” diagnosed at age 15 (I’m 21 now). My mom and dad (who also has RP) first noticed that I showed signs of RP while waiting for a ride in Disneyland. I think I had just turned 5. He had asked me to go throw something away, and I couldn’t see where the trash can was (it was very dim lighting.) From that moment on we knew it was most likely RP.
What was that moment like?
“Officially” finding out that it was for sure RP was rough. At 15, all you can think about is “How am I supposed to go to dark school dances?” “How am I supposed to drive at night/drive in general?” “How am I going to see in class when the instructor turns out the lights?” “How am I supposed to go to parties with friends if I can’t see very well in their house?” Of course you can find alternate ways of handling these things, but it was a huge upset.
What stage are you at? Can you drive? Do you use a cane?
I’m honestly not sure what degree of vision I have left. I still drive periodically, but it’s only to places that have very few people around, and during the day. I have never driven at night. I live out in the country, so this is a plus! Very open, empty roads. If I lived in the city, it would be a completely different story, that’s for sure. As for the cane, I have one. Do I use it? No. I felt like it was a big step just purchasing one and having it in my possession. Baby steps
What inspired you to make the RP Truths t-shirts?
I was sitting on the couch one night, thinking “it’d be nice if I didn’t have to explain why I didn’t see someone’s hand to shake it … Like if they somehow would just know… ” I then created the idea of the t-shirt. Have a phrase (sarcastic or not), that would simply explain my vision. And then the seed was planted
Where do you get the phrases?
The phrases were all made up by my experiences (and my dad’s) with people around us. I remember one time in particular, my mom, dad and I were at a car lot. The salesman was probably the rudest man I’ve ever met. My dad had his cane out, and was talking to the guy. After leaving us for a brief time, he comes back, looks at my dad, and goes “so… you’re really blind?” I was shocked. Is this man serious? Is he really that negligent? Needless to say, he helped fuel my fire
“It’s right there.” Doesn’t help.
I am visually impaired. No, I’m not faking it.
Do not walk in front of me, you will be run over.
“Are you blind?” Nope. I just like carrying this stick around.
Wet floor signs are, and will always be, the enemy.
How has the response been to the shirts?
The response has been outstanding! It’s great to see that so many people can relate!
What inspired you to give part of the proceeds to the Foundation Fighting Blindness (FFB)?
My parents have always given back to FFB, so it was a no-brainer. I strongly believe in the research that they do, and support finding a cure.
Who is someone with vision loss that inspires you?
Definitely my dad. I remember growing up, and not once questioning why he had “bad eyes” (as he says). I truly believe, the way my dad and my mom brought me up has helped me tremendously with the way I look at life. RP has never been a bad or horrible thing, it was just a condition in our family, and that was that. My dad always sung me a song from the band “Rush” called “Roll The Bones” and it’s main lyrics are:
Why are we here? Because we’re here, Roll the bones.
Why does it happen? Because it happens, Roll the bones.
Meaning, life gives you the cards you’re dealt. You can either take them and make the best of the hand you’ve got, or you can throw them on the table and quit. My dad is my superhero, and I don’t know what I would do without him. He is such a role model and one of the biggest influences in my life.
If you knew you were going to lose all of your sight, what would you want to see that you have not seen already?
The world. I dream of traveling to many places around the globe. I feel like there is so much to see, and so little time. RP is like a ticking time bomb… you never know when it’s going to go off. I never want to regret not seeing the world when I had the vision to.
How does your condition help you? Is there something you do exceptionally well because you have RP?
It’s funny. I actually have 50% hearing loss in my right ear, but can hear better than most people I know! I think having RP definitely heightens your other senses (even your intuition). RP has also allowed me to go with the flow of things. I can’t change what happens to my eyes, I can only adjust. Just keep swimming
What is the funniest moment you have had because of RP?
There are sooooo many. I’d have to say one of the funniest would be when I went to a haunted corn maze in high school. It was night time, and I clearly couldn’t see. We were all huddled together in a huge group walking. Everyone was screaming and saying “ahh he’s right next to you!!” Yeah… the most boring night of my life lol. I couldn’t see anything at all, so nothing scared me! As we were approaching a tunnel, one of the scary voices said “Are you scared yet?” Jokingly I said “Actually no… I can’t see anything…” He then lit up his face mask and screamed “How ‘bout now?!” I jumped like no other. Everyone started laughing, because I was finally scared.
What advice do you have for others who are dealing with RP?
It’s not easy to deal with. One minute you’re fine, and the next you feel like you can’t go on. But you have to. Life doesn’t stop. People don’t stop. Only you do. Keep going. You were given this condition for a reason. In my opinion it’s to teach others that life is a valuable thing, and it’s not to be taken for granted. We all have the power to change the world, so get to it
Thank you, Katey, for taking the time to answer these questions. Anyone who wants to check out and/or purchase “RP Truths” T-shirts, may go to the “RP Truths” Facebook Page. To see more RP items, visit Katey’s Unique Boutique.
Also, to help me choose which shirt I should buy from Katey, go to my Facebook Page.