25 Facts about my Retinitis Pigmentosa

My Fact List

1. I “look” like a sighted person because I can look you in the eyes pretty much spot on in a well-lit room.

2. I have lost about 90% of my vision, but the loss is mostly peripheral.

3. My central vision still remains amazing at 20/30 and 20/40.

4. I prefer high contrast but can still manage to read if it’s not . White on black is just amazing.

5. I can see fairly small print depending on the contrast and lighting situation but most of the time it just gives me a headache so I don’t. I love how my computer can enlarge things for me and I also have a CCTV (don’t use it much yet).

6. I struggle a lot with going from light to dark situations and vice versa. We actually discovered my RP when I went from light to dark situations, and dark to light situations, and I would nearly pass out or actually pass out. I went to a billion doctors and then ended up back at my Pediatrician when nobody could find anything really. That’s when she saw the pigments on the back of my eye and we started going to more eye doctors and specialists. I still think it was my body’s way of having a panic attack because of the vision loss but that hasn’t been confirmed.

7. When I start to even get a bit tired, I can’t stand bright light. I can handle bright lights some of the time, but I much prefer medium-lit lights.

8. The sun absolutely blinds me, but so do clouds. I pretty much have to have a perfect day where it isn’t cloudy nor sunny nor raining to see at my best, and that never happens in Texas.

9. Lots of people think I’m faking my vision loss because I can make eye contact, I do still have some vision, and I use my computer, etc without speech. It bothers me more on some days than others, but it’s just a good opportunity to advocate for individuals with vision loss. I don’t always think of it that way in the moment though.

10. The cane has been very helpful at times, but I am still getting used to using it because it makes my generally invisible disability turn into a visible one.

11. I love little kids but I am also anxious around them, especially if they are just running around. I don’t want to be that “jerk” that knocks over a kid and makes them cry, whether I have a valid “excuse” for it or not. The parents, if they are strangers, don’t understand and the kids of course can’t understand my vision loss.

12. If someone is talking about my RP in terms of me having a disability I would rather they say “Because you do have a disability” Instead of “Because you’re disabled.” I don’t think that has anything to do with my program in school either. But seriously people, person-first language is the way to go!

13. Walking around with my cane causes me to do some funny/abnormal things sometimes. It’s amusing to smile at people who stare at me when I’m using my cane. I wish I had the time or energy or right way to explain to every person that stared at me about my vision. Sometimes, if someone is walking straight towards me and I see them or maybe I don’t see them until the last second, I won’t dodge them if I have my cane. They are usually texting and it is their responsibility to dodge me, because they CAN see, not vice versa.

14. I am have an AMAZING ability to fall over almost every chair in a dim-light restaurant. Somehow, every chair just seems to be attracted to me and comes out to bite me. I’ve started holding on to people more now or using my cane.

15. It is hard to describe my vision. I can tell you it’s like looking through a hollowed out toothpick, I can tell you the degrees that I see and my central vision acuity, but I can’t accurately describe my vision because it’s not as clearcut as that.. I have blackspots where I can’t see just randomly around my retina in addition to the tunnel vision.

16. I look dumb or clumsy a LOT of the time because I don’t see or pick up on things that others think I should. (Again, because I look sighted).

17. My vision gets temporarily worse when I drink (alcohol).

18. I CAN still see stars, but only if they are super bright. I also love fireworks! šŸ™‚

19. I love working with individuals with disabilities and am very understanding of many of their situations. It bugs me to death though when they try to compare their disability with mine and say they have it harder. They may, but they also may not. They experience different challenges and we really don’t need to compare. We should just support each other.

20. When I worked at Apple, I did tell my employers and very FEW coworkers of my vision loss but I tended to downplay it. Now when I walk in holding onto my boyfriend or when I was just in to buy a computer, everybody was blown away that I couldn’t see that much.

21. I think that the lack of light intake in movie theaters tells my brain that it’s time to go to sleep. Because for most any movie, even if its really enjoyable, I fall asleep for at least a few minutes. It says nothing about the company or movie, just something that my body does. I can’t sit super close to a movie screen because then I like just see a tiny box or the corner of the screen and it’s super annoying. Luckily, most theaters now have seats for individuals with disabilities and their families and they are at PERFECT distance away from the screen so I have started to use them.

22. I have had the opportunity to see who is really going to stick by me through thick and then and see me for who I am, not just my disability.

23. My vision loss has brought about a whole new perspective on so many things and has also broadened my horizons in terms of the disabilities that I would like to work with as a professional. I have had the opportunity to meet and network with some amazing individuals because of my vision loss and appreciate some of the smaller things way more now.

24. The most frustrating thing about RP, as is the case with I would imagine most vision disorders, is the inability to drive. Our country is so dependent on driving to get to one location to another. Public transportation exists, but it’s not great, so when you give up the ability to drive, you give up a lot of your independence and it SUCKS!

25. The second most frustrating thing about RP is that it is so unpredictable. It was stable for years and then BOOM, I have to learn to adjust to the vision loss again. It wasn’t all of a sudden, of course, but I started to have more and more problems and then suddenly realized that I had lost a lot more vision. With RP, you have to constantly adjust.. sometimes, I wonder if it would just be better to go blind all in one shot.

Published by

Jessica N and Makiko

Jessica is a proud Texan. She graduated in 2014 with her Master of Science in Rehabilitation Counseling and is now employed. She is visually impaired and has a retinal disease, Retinitis Pigmentosa. Originally Jessica started blogging about everything from being diagnosed with the disease to where she is now, almost 9 years later. Then, Jessica went to Guide Dogs for the Blind and was blessed with Makiko, her new guide dog. Now, her blog "The Way Eye See The World" is about everything related to visual impairments, including guide dogs.

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