Apparently, February is Retinitis Pigmentosa (RP) Awareness month. Let’s talk about RP then. I hope I haven’t confused any of my readers about what it is that I have, exactly. I’ve mentioned several times that I have Usher Syndrome, but then I’ve thrown in that I have RP here and there…
So for the sake of clarity let me break it down. My deafblindness is caused by a rare genetic disorder called Usher Syndrome. There are three types of Usher Syndrome, all of which are very similar, with the main difference being the degree of hearing loss (you can learn more here). I have Type II, which is characterized by congenital bilateral moderate to severe hearing loss. I am also gradually losing my sight and this is where RP comes in. RP is the condition that is causing my photoreceptor cells, the rods and cones, in my retina to deteriorate. The rods were affected first, so my night vision was the first thing to go, followed by my peripheral vision. Now, the cones are starting to die as my visual field closes in. So basically, the combination of hearing loss and vision loss (RP) means that I have Usher Syndrome.
In light of February being RP Awareness Month, I’d like to share eight things about my experience with it.
Got Peripheral Vision?
I can see enough to not “look” blind to the general public. I have good central vision and can read books, menus, and my phone. I can also enjoy writing and practicing my modern calligraphy skills. But I have ZERO peripheral vision. And, unfortunately, Hubby likes to use this to his advantage. How so? By stealing food off my plate. Not cool.
My blind spots are not black.
Most people think that blind spots are black, and if you google “RP vision” you’ll see pictures with a black “donut” shape around the image. That is not how I would describe my vision. It’s more like a hazy area in the periphery. My brain knows that there is more to see, but I cannot tell you what is there, unless I move my eyes around to focus to the surrounding area. To give you a better idea of what I mean, look at the pictures of two black cats below. The left is how the cats look with regular vision and the right is a simulation of vision loss due to RP.
Because I do not “look” blind, I probably offend someone. Every. Day.
Every time I go out in public, I probably offend someone without even realizing it. Whether it’s because I didn’t see them stick their hand out to shake my hand or because I cut right in front of someone at the grocery store as I’m searching for that item I need.
I can’t see stars.
Well, it’s rare when I can spot a star; but usually if I see something it’s a planet. Hubby and I went on a cruise a few weeks ago, and one night we walked out on the bow of the ship and looked up at the night sky. I was able to make out the big dipper for the first time in a really long time!
Wet floor signs and I…are not friends.
They do exactly the opposite of keeping me safe! They ALWAYS have it out for me and trip me up.
I struggle with car door handles…
Finding the car door handle (on the inside) in the dark is a nightmare. I often fumble around feeling around for the dang thing for a whole minute. Seriously, why can’t they all be the same type of handle, in the same exact spot in every car?
Sometimes I get strange reactions from people…
When my husband tells people that I am legally blind they laugh. Well, it’s more like a little chuckle. Hubby and I were talking about this the other day. We aren’t sure why, but he suspects that they think he’s joking about my blindness. I don’t take offense, but I have noticed this weird reaction.
I almost wasn’t diagnosed with RP at 13.
When I was about 12 or 13, I failed the eye chart test at school. During my eye checkup with the eye doctor, everything seemed normal. In fact, I was just about to get out of the chair when my dad happened to mention to the eye doctor that I wear hearing aids. The doctor immediately paused and looked at me. He then said he needed to take one last look at my retina. After that he recommended that I see a specialist. From there I was diagnosed with RP. If my dad hadn’t mentioned my hearing aids, I probably would have been a lot older before I was diagnosed. And quite honestly, I’m glad I was diagnosed at a young age. I truly believe that God’s timing was perfect. I don’t think the process of grieving my vision loss would be any longer or shorter. I’m just thankful to be in the stage that I am. Scared, yes. But closer to acceptance.