Before my eye doctor told me I had retinitis pigmentosa on October 31, 2022, I had never heard to the syndrome. When he first told me the name, it sounded to me like a form of color blindness (pigment). When he explained it, it was almost like it suddenly all made sense.

I have had vision problems for probably my whole life. I was diagnosed with what was then called “lazy eye” as a youngster and had to do eyeball exercises to make my right eye stronger. This included holding my hand over my left eye and moving a pencil in front of me, following it with my weak eye. For an extra challenge, one of my parents would move the pencil.

I had glasses when I was in grade school, broke them a couple of times; got a new pair in high school and broke them in college. After that, I thought my vision was improving and went without glasses for quite a few years.

Eventually, I found it harder to read some stuff. Finally, in my early 30s, I caved in and bought a pair of reading glasses. I used those for several years, increasing the strength every few years.

Finally in about 2017 or so, my wife rightfully decided I needed proper glasses again. We got a pair at Walmart, my vision improved for a while…then I broke them again. Unfortunately, at about the time I broke them, a virus was about to cause a world-wide pandemic (thanks to the inaction of our president at the time, but that is a whole other matter). Around the time I got those pair of glasses, I also noticed my night vision was really tanking. I do a lot of early morning runs, so I use a headlamp to help me around. But, I was finding I needed brighter headlamps to help me along. I just shrugged it off as a sign of getting older.

I went back to reading glasses. More and more, I found the reading glasses to be less and less useful. I bought a couple of magnifying glasses to help me around. Around the time of the pandemic, I noticed a bit more that my peripheral vision was not what it once was. I was having a harder time seeing people coming at me from the side. I at first thought it was just my nerves on edge because of the pandemic, but as time went on and the pandemic waned and the peripheral problems continued, I shrugged it off as being old age. During larger running events with more runners, I found myself bumping into a few more people than before…but, again, it was just age. Or so I thought.

Finally, we decided I again needed true glasses, and set up an appointment for that October day. One of the first tests they gave me was a peripheral test, where they flash lights out of your peripheral and you press a button when you see it.

“OK, now, when you see the light flashing, press the button.”

“Yep. Will do.”

Pause.

“Remember, press the button when you see the flashes.”

“Yep. I am not seeing anything.”

“Oh. Do you see anything now?”

“No.”

Pause. “Well, you will have that sometime!” But, I knew something was wrong.

When Dr. Roy gave me the diagnosis of retinitis pigmentosa and explained what it was, it was almost like a weight had been lifted off my shoulders. Finally, I knew that it was not my imagination, it was not my over use of reading glasses – this was, in fact, a vision problem.

Retinitis Pigmentosa is usually a genetic disease. If both of your parents have that gene, there is a 25 percent chance you will get it. I think my dad may have had RP, but he threw away a lot of records when his mind was going from dementia. In fact, I wonder if somewhere in those records, there were childhood diagnosis of my early RP cases which have been forever lost. Since I have no recollection of the names of the doctors I saw all those years ago, I am not certain I will ever be able to find that out.

Anyway, along with being a genetic disease, there is no cure for RP. It is also progressive, meaning my night blindness and peripheral will grow smaller and smaller. Total blindness is a rarity amongst those who have RP, but it can cause a lot of visual fuzziness. It is caused by my genetic makeup deciding that all of those rods and cones in my retina are really pretty worthless and just need to go away. There is some research being done for it, but so far no cure has been found. Retinal or total eye replacements do not work, but body just rejects those other rods and cones.

Along with a waning peripheral field and night vision, RP can also cause an aversion to light (I have a tough time going from out doors to indoors, as the room gets totally black), a lot of floaters and a lot of static. There will be a picture at the bottom of this post which will give an idea as to what the world looks like from my point of view – fuzzy on the outside, sometimes clear on the inside. However, I also find myself with a lot of static on the outside.

Remember what Sauron’s eye looked like in the Lord of the Rings trilogy? I swear, Tolkien and Jackson must have RP, because a lot of times that is what my world looks like. A small clear field of vision, surrounded by a ring of fire. Kudos to them.

But, sometimes that middle field of vision is not so clear. Sometimes it can also be filled with static. Or, it can be filled with ghost images, the after-images of things I have just looked at. Sometimes those images last longer than others. Other times, they can cause some confusion. A couple of days ago, I could have sworn I was about to bump into somebody at work. There was nobody nearby. It was simply a ghost vision.

Since I had the diagnosis, I feel like my vision has gotten worse. I am not certain if it actually has, or if it is simply something I am more aware of.

But, I am not ready to give up those things I enjoy, like entertainment, running, video games and watching baseball. Which reminds me, the Reds are playing the Brewers right now…