The day of my RP diagnosis was filled with different tests, including an ERG (Electro Retina Gram), which tests the retinas response to light. It was by far the most grueling of the tests that day ( I wrote about it in another blog post when my blog was brand new), but I was lucky because I didn’t have to have another one…..until yesterday.
I have to say that this time, the ERG was much less traumatizing, both because I knew what to expect and because the woman administering the test was compassionate and friendly (the opposite of my first experience). Don’t get me wrong, I was still freaked and the test still seriously sucks, but a friendly and competent tech makes a huge difference.
For those of you not familiar with the procedure of the ERG/Dark Adaptation test, let me give you a run down. After your eyes have been numbed and dilated, you have to sit in a completely dark room for 30 minutes; and I mean completely dark, like the woods in the middle of a cloudy night with no moon dark. The idea is that 30 minutes will be enough time for your eyes to adjust as much as they can, which with RP is pretty much not at all, as most of us have night blindness. I sat there in the room trying to meditate and, every few minutes, I put my hand in front of my face to see if it was becoming any clearer. It never did. The first time I went through the 30 minutes in the dark room, I was terrified and crying; this time, I was more contemplative. I kept my awareness on the darkness itself; it was as if I could see inside of it. It felt like a web around me and was at once suffocating and endless. I was more curious about it than afraid of it.
After the 30 minutes went by, the tech came back into the room, through a special door, between the outer room and the dark room, that prevented any light from entering. It is very important that the first part of the ERG be in darkness; hence the dark adaptation portion. And, then the real fun began. First, she gave me some more numbing drops and while they were doing their thing, she attached an electrode to my forehead and started prepping the discs. Plastic discs (they call them lenses) get inserted between your upper and lower eyelids to prevent you from blinking and ensure your eyes stay as open as possible during the test. The first pair of lenses she tried to insert (the one’s for grown ups) were too big. She left the room and came back with pediatric lenses; also too big. What the hell, I thought. I know I have tiny eyes, but they are bigger than a babies eyes. She came back with the smallest lenses and those, finally, went easily into place. She told me that I required the smallest lenses because I have high cheekbones, like Cindy Crawford. I think she was just being nice, but I was grateful that she didn’t try to force the grown up lenses between my lids. It became clear to me that the first ERG tech had forced the larger lenses and that must have added to the horror of the whole thing.
To insert the lenses, she asks me to look down while she pulls my lashes and upper lid open, placing the disc first into the top part of my eye and then into the lower. She then attaches electrodes to each of my cheeks and tapes the wires into place. The room is still dark and I still can’t see a thing, so I turn my chair to where I think the testing device is (turns out I got it right) and she guides me toward the chin rest.
The testing device is a big dome with the chin rest at the opening. At the back of the dome is a red light; she asks me to try and stay focused on the red light; it is the first light I have seen in an hour. Then the test begins. For the first part, the dome remains dark. Lights shoot toward my eyes about five or six times, then stop and then start again with varying intensities. There are about 6 rounds of flashes in the dark and then she turns on the light in the dome.
It is an insanely bright light. And remember, my pupils are dilated, my eyes are being kept open so I can’t blink and I have increased light sensitivity even when my pupils haven’t been dilated (another perk of the RP). This is pretty much my worst nightmare. The tech tells me I have to wait five minutes to adjust to the light. My eyes are in agony.
The first sets of flashes are, like the ones in the dark, about five or six seconds a piece, but this time, I have to wait 2 minutes between each set. My eyes are burning and stinging and the lights in each set increase in brightness and speed and each 2 minute waiting period feels like two hours. Thankfully, the tech talked to me and kept me aware of the time; she was really sensitive to how I was feeling. She knew what was coming.
They save the best for last. The final two sets of lights are successive and last about ten seconds each. The lights are like frantic strobe lights that shoot at your with a force of brightness that takes your breath away. The very last sequence was so intense and painful that my lower lip and chin started to spasm. Ten seconds of pure hell.
The technician was pretty quick, thankfully, to get my face out of the dome and the lenses out of my eyes. Then, she rinsed each eye a few times with a really cold saline solution and told me my pupils would be dilated for at least another 2 hours (I knew it would be more like 4) and that my eyes may feel a bit dry and scratchy for a few hours after the numbing drops wore off. She led me to the door (she was a good guide, by the way) and I stepped out of the nightmare and into a bright blurred hallway.
I couldn’t see a thing. Luckily, I had Zelda.