As the years passed, Dr. Yannuzzi and his team learned more about my disease, adding a second diagnosis to the list, calling it AZOOR, which stands for “Acute, Zonal, Occult, Outer Retinopathy”; basically a long description of a mix of conditions. I was now one in 5 million, and liking my odds of maintaining some useful vision into adulthood, less and less with each gut-wrenching set of more bad news. My retina was extremely damaged, and a full-color montage of photographs of the back of my eye painted a very clear, concise picture of the extent of the carnage. It looked like one of those “Healthy lung vs. Smoker’s lung” photographs you see in public service announcements. All the tissue in the center was bright, pink and healthy. All along the edge of my retina, along the periphery of my vision, was a minefield of dead, black tissue . Any new, actively inflamed tissue were bright white scar tissue before they turned black and died, completely blocking out that section of my peripheral vision.
I continued to be lulled into a false sense of security, as I remained fairly stable for several years until I developed a bad case of bronchitis, which turned into walking pneumonia. I started seeing spots about a week after I was feeling better, and went to my local eye doctor to have him take a peek. I felt like I was bumping into more things and having a tougher time at night on the road, and experience told me that waiting was not an option. He took a look, and felt strongly that things looked quiet, and sent me home more puzzled than ever, confused that perhaps I was being a little too nervous and that it was simply my imagination.
As my lease was coming to an end on my SUV, I decided to lease my dream car; a fun, sexy, sporty, hard-top convertible, knowing that it would probably be my last car, given the disheartening statistics of people with my eye disease at my age. A four -year lease would put me at 36 years old, just four years shy from the most likely end to any usable vision. I loved the car, and drove around in the rain and sun with the top constantly down, enjoying the freedom and good visibility that an open-topped vehicle provided. I began to think I was so clever for buying a car that provided such great visibility and had numerous safety features, like anti-glare tints on all the mirrors and glass. Driving home late after dinner at my sister’s house on a stretch of highway that was under heavy construction finally did me in.
It was pouring rain and lightning, and this stretch of I-287 had no working street lights. Cars were moving at a crawl, and tractor trailers were sending buckets of water from the ground into the air like a heavy, impenetrable mist, causing me to turn my wipers up as fast as they could go in futility. It was no use. Visibility was less than ten feet in front of my car. I hung back from the trailers, hoping to at least follow their dim tail-lights to avoid hitting the jersey barriers that line this stretch of road. To add insult to injury, the highway department had shifted the lanes over several meters, and took black paint to hide the old yellow lines and never replaced them with new ones.
Without a car in front of me to guide me, I had absolutely NO idea where in the hell I was on that highway. For all I knew, I could be headed straight for a concrete barrier. I slowed to a crawl, cursing my vision and cursing the rain that was triggering my photopsia, the brightly colored lights that flashed before my eyes due to the damage in my retina. I could never get used to this, and it typically only happened if I sneezed, turned my head too fast, or there was heavy rain- like right now. The flashes blocked out my remaining usable vision, and I slammed on the brakes, putting my safety hazards on in case someone came up behind me. I was lost in the middle of the road, with no light to guide me. It was time to see Dr. Yannuzzi for some answers.