At the end of my last post, I left you in the hallway after leaving ERG hell, and my eyes were useless……
The light in the hallway was incredibly bright, an assault on my dilated pupils, but all I saw was brightness through a haze. I put on my sunglasses and my hat, but the light was still unbearable. I knew I was going to have to use Zelda to help me find my way up to the lobby and outside to meet Joe. I didn’t hesitate; I unfurled her, got into position (holding her grip in handshake position, right arm extended out at the middle of my body), swept Z out to the left and took a step with my right foot. I felt confident and walked down the deserted hallway at a pretty good pace. I had a visual reference from when I had come down to the basement for the test, so that made it easier to get back to the elevator. All I could see was white, like I was in one of those asylum rooms that are in the movies to emphasize the crazy in a person or a scene. I felt so grateful to have Zelda with me at that moment.
Every time I use the cane, I feel more confident and become more familiar with her nuances. I can now actually imagine how it will feel when she is an extension of me rather than a marker of my disease. I feel myself easing into a rhythm with Zelda. We made it up to the lobby and out the front doors to wait for Joe in a shady spot.
Even from the shade,the sun was more painful to my eyes than the light in the building, so I kept my eyes closed, leaning on Zelda for support. Joe had parked the car in a lot 6 winding blocks from Jules Stein Eye Institute and we were going to walk back to the car together. When I opened my eyes to take a peek and see if Joe was coming, I saw him walking up the ramp. I couldn’t help but wonder if it made him sad to see me there with Zelda, but he actually seemed proud of me.
The walk to the car went well. I had Joe guiding me expertly on the left and Zelda in my right hand, so I was well covered. My eyes had begun to sting pretty severely, so I kept them closed for most of the walk, thinking it was the sun that was causing the burning. It was the first time I felt somewhat relaxed being out with Zelda . Of course Joe was with me and he always gives me confidence and a sense of safety, but I was still really happy with the way I felt and the flow that I had with Z. I felt progress and that felt good.
By the time I got into the car, the burning in my eyes was almost unbearable and I discovered that it was actually worse when they were closed. So, I opened my eyes, but hunkered down under the huge brim of my hat to protect my still dilated pupils from the sun. There was no relief and rubbing my eyes only made the burning worse; but I was compelled to rub them to try to force the burn out. Nothing helped and I started to panic. It was a very long 40 minute ride home.
When we finally arrived at our apartment, I rinsed my eyes with an eye bath solution, but this only provided relief for about two minutes. I tried to rinse with cold water, but that intensified the burn. I was exhausted and just wanted to go to sleep, but closing my eyes was not an option. I paced around my house and bathed my eyes every ten minutes, but the burning continued. Then, I started to feel a sandpapery dryness under the burning. I was freaking out. The ERG was torture enough and now it appeared that it would continue for hours. It did. My eyes didn’t start to feel better until about 10 pm that night, 7 hours after the ERG.
When I woke up the next morning, there was a weird crust all around my eyes, but the burning had stopped and my pupils had gone back to normal (RP normal anyway). I really hope I get at least another ten years before having to enter ERG hell again.