25 Things About My Life with RP

For those of you not on Facebook, there is currently a “meme” going around where people share 25 random facts about themselves. After writing their list, they then “tag” 25 Facebook friends, asking them to complete it as well. All in all, it is a really cool way to learn some interesting, poignant, random, and entertaining facts about your friends.

Despite being tagged, I have held off completing this task, mostly because I wasn’t sure what to say. However, today I came up with a spin on idea that makes me excited to give it a go: Instead of writing 25 random/general things about me, I have decided to write 25 specific things about my life with Retinitis Pigmentosa (RP).

25 Things About My Life with RP

1. I have lost about 75% of my vision, mostly peripheral.
2. Night blindness is one side effect of RP. I cannot see anything in the dark. If it’s pitch black out and I only have a flashlight, I can only sort of see where the small beam of light is pointed.
3. My central vision is awesome. Contacts and glasses correct my central vision to 20/40.
4. I can still read small fonts without problem, but if I have the option I will usually select a larger font.
5. RP is totally frustrating in that it is completely unpredictable. My highly trained and specialized eye doctor has no way of knowing how much vision I will retain or lose, and at what rate or speed. I was told that I might have my central vision for 10, 20, or 30 years.
6. People have asked me what my lost vision “looks” like. I tell them that my lost vision isn’t replaced with anything like blackness or darkness… it’s just like a void, or a hole, or an interruption in my visual field. Where ever there is a “hole” in my visual field, my remaining vision just sort of fades into and out of the emptiness.
7. I can only see very bright stars in places with low light pollution. One of my favorite activities is to have a friend try and point out stars for me.
8. I LOVE fireworks. I pretend they are stars.
9. Dimly-lit restaurants are an obstacle course for me. Most times I can get by with just following the waiter or companion to the table (I dodge where they dodge, I step where they step, etc.). If it’s too dark, then I’ll ask to take a friend’s arm.
10. I have had a couple of people try “test” me, to see if I am faking my vision loss.
11. I have unintentionally knocked over, or run into, the following items because of my vision loss: a chair, fire hydrant, stool, table, car, Wet Floor signs, directional signs, dogs, cats, and children.
12. Quiet, stealthy children should be encouraged to wear little, tinkling bells at all times. Either that or carry Tic-Tacs with them.
13. I am adamant about getting to movies early because I hate walking in when the theater is dark.
14. I have to sit far away from the movie screen, in order to get as much of it into my central vision as possible.
15. Bright light hurts my eyes.
16. Cloudy days can be just as bright as sunny days sometimes.
17. If I am sitting in a dark restaurant, facing a bright window, I will ask to move, or change seats with someone because it hurts my eyes to look into the bright light.
18. I prefer to sit in seats where the light is directly behind me, thus illuminating everything in front of me.
19. It takes a minute or two for my eyes to adjust if I go from dark to light, or vice versa. For this reason, I will often stop right when I walk into a building from outside. Or I will put on sunglasses right before I exit a building, if I know it is bright outside.
20. I could probably create a whole separate list of “25 things” just for my favorite “visual delights” (things that will make me stop and stare). Examples include: sunlight on water (fountains, ocean, lakes, etc.); rainbows; seeing the world from a plane; shadows; falling leaves; artwork; etc.
21. One of the most randomly specific visual delights that I can think of can be found at Jupiter’s bar in CU: the reflection of the pool table light on the wood benches is just BEAUTIFUL. I love it. It’s a rainbow of color.
22. I have a hard time not stopping and explaining to every confused person I see what RP is, and why I might need a cane to get from one location to another, but can then read a book once I get there.
23. I am still figuring out where and when I should use my cane. For now, I mostly just use it when I am alone, and/or in crowded or unfamiliar places. I definitely use it if I am alone and it’s dark.
24. I am currently struggling with when to tell prospective employers about my vision loss. Do I tell them before they offer me a job? When they offer me a job? After I am hired? Or should I stay silent?
25. My vision loss has been a HUGE blessing to me. It has led me to a wonderful relationship with God. It allows me to appreciate “visual delights.” It helps me to enjoy the small things in life.

That was more fun that I thought it would be! I hope you enjoyed reading it as well. If anyone would be interested in reading a “25 Things About the Camino de Santiago” one, let me know. Now that I have the hang of this, I’m thinking it might be fun to try again…

Tags: 25 things, meme, Retinitis Pigmentosa, RP