Vision Loss

DSC00005I have a degenerative eye disease called Retinitis Pigmentosa (RP). RP progressively destroys one’s vision by attacking the light receptors (rods and cones) in the eyes, making them incapable of functioning correctly. The rate of progression is variable, and vision can change from day to day.

I was diagnosed with RP when I was fifteen years old. My family did not have insurance when I was a kid, so I never received any follow-up care or counseling. I was left in a vacuum to deal with this difficult-to-understand diagnosis, so the easiest thing to do was ignore it.

Over the next several years I lived my life and tried not to think too hard about my RP. Even when I could tell the disease was becoming advanced, I ignored it, tried to deny it was happening, and continued on like normal. I disguised my ever-increasing clumsiness behind a smile and joke; when I was unable to see objects others pointed out, I simply pretended I could.

It took a real clinical examination in 2003 to force the facts on me. It did not go well. It became painfully obvious during the exam that things were worse than I thought. I suppose you learn little tricks to compensate for vision loss, but it’s more difficult to fool sophisticated diagnostic equipment.

The Electroretinogram (ERG) showed the expected deterioration of light receptor function. There is so little activity in the rods and cones it cannot be accurately measured. The Goldman Visual Field Test showed the arc of my peripheral vision to be about seven degrees wide. A person with normal vision would have around 180 degrees.

What does this really mean? Okay, try this: Take two toilet paper tubes and place each to one eye so that you are looking through the tubes like binoculars. That is what my world looks like. Also, I am totally blind in the dark, and my depth perception — especially in situations where there is little or no contrast of objects — is almost nil. What that basically means is that I am legally blind.

I also developed cataracts in both eyes, which is common in people with RP. As of 2010 I have had both cataracts surgically removed and replaced with synthetic lens.

On the positive side, I do have fairly decent forward acuity. You just have to stand directly in front of me, and not more than a few feet away, and I’m good. And I can still read most print, though sometimes I need a magnifying glass. This causes confusion for some folks — because I still have some usable vision, I don’t always appear blind to the casual observer.

As I came to accept my impairment, my life went through a lot of changes. Probably the single most difficult adjustment for me was when I stopped driving. The loss of mobility and independence was frightening to contemplate at the time. Despite the skills I’ve learned and the access to the metro bus line, it still rankles sometimes — like when I have to spend hours a day on public transit running errands.

I will admit that there was a part of me that thought it was supremely unfair for me to have to quit driving — but in the end it’s not about what’s fair, it’s about what’s smart. People who refuse to turn in the keys long after they’ve lost the ability to safely operate a motor vehicle are a death waiting to happen. The real eye opener (no pun intended) for me was when I nearly ran down a group of pedestrians in a crosswalk. Had my wife, Sherry, not been with me and cried out for me to stop the car, I am fairly sure I would have injured or even killed someone. There had been several instances over the last few months before I stopped driving where I navigated a stretch of road from memory as much as from what I could see.

In October 2004 I completed rehab courses at Vision Loss Resources, gaining a new set of skills and tools to make my life better, and to allow me to continue living my life on my terms. I think the most important thing VLR did for me was putting me in a setting with other visually impaired people. It was reassuring to be with others who were riding along with me on this strange trip our lives had become. Another important tool I gained at VLR was learning the use of a white mobility cane: Though I have some vision, using a white cane allows me to travel more safely and confidently and it alerts other folks of my impairment (so they won’t run me down).

Though the disease is progressive and my vision continues to deteriorate, I have come a long way since that exam. Back then I wasn’t sure things were ever going to be all right in my life ever again. Now I know my life’s as good as I’m willing to make it.