How It All Started To Change
It was the spring of 2017 when I started noticing some abnormalities in my vision. I’m not a morning person. I don’t wake up so much as attempt to compel my body to drag me toward the coffee machine. As that first pot brewed, I’d sit on the couch and wait for the morning fog to begin to lift. I’d look out the window and notice that the frame would vibrate like a plucked guitar string. In fact, all hard edges like picket fences, cabinet doors, and the edges of tables did.
I thought, “That’s weird,” and shrugged it off as just a sign of aging.
A few months later, I started to notice what I can only describe as high-speed film grain when I stared at something like the trees lining our property. Again, things were starting to get weird. As the summer went on, I became aware of a subtle change in the transition when I came in from being outside. The room was much darker than it should have been and for longer. The light outside was blazingly bright when I’d go out. My eyes just weren’t adjusting like they used to. This was weird but not alarming.
Happy Holidays!!!
That was until the Christmas season when I started seeing a marquee-like strobing in the periphery of my vision. Now was the time to be alarmed.
I can only describe the strobing in my vision as a combination of on-off flashing, ripples of water in a lake, and a big flashing theater marquee that’s also a bit veiny.
After all the holiday stress turned into holiday cheer, all the gifts were unwrapped, and cocktails were drunk, it was time to pay a visit to the ER because this wasn’t normal.
The week after Christmas saw me paying multiple visits to the Emergency Department. The problem with needing a specialist around the holidays is that the doctor is most likely away. So, after multiple visits (one where I caught the flu), I was given the name of a retina specialist who was able to open his office on the morning of New Year’s Day. The doctor did an initial examination and said I might have a rare genetic disease known as Retinitis Pigmentosa.
At the time, I had no idea what that meant, but the word “blind” was thrown out casually, and I was understandably worried. I didn’t want to believe him. I was a photographer, after all, and there’s no way I could go blind.
The week after Christmas saw me paying multiple visits to the Emergency Department. The problem with needing a specialist around the holidays is that the doctor is most likely away. So, after multiple visits (one where I caught the flu), I was given the name of a retina specialist who was able to open his office on the morning of New Year’s Day. The doctor did an initial examination and said I might have a rare genetic disease known as Retinitis Pigmentosa.
At the time, I had no idea what that meant, but the word “blind” was thrown out casually, and I was understandably worried. I didn’t want to believe him. I was a photographer, after all, and there’s no way I could go blind.
The Quest for Answers
I sought out every possible answer that wasn’t Retinitis Pigmentosa. One theory I had was that I had a mini-stroke, which made my vision weird. So, I ran a battery of tests on my brain that included an MRI and an EEG. Did you know syphilis can cause weirdness like I described in your vision? Well, I got tested for all STIs and threw in Lyme disease because that can be a cause too. The thing is, all of these issues were treatable. While RP is not. Doctors don’t even have much to manage it.
All tests came up negative, and after months of testing, I was sure it was RP. I still wasn’t ready to accept it, though.
