Fading To Black

Picture of Emma in 2014, the year she received an RP diagnosis

For my first post, I’m sharing part of an essay I wrote about the day I received my diagnosis. It captures much I was feeling on that fateful day. The above picture was taken less than 30 days after learning the awful news. 

“When I was five years old, I learned that the world I saw was hazy. Not like a foggy morning — houses, trees, grass, and even people only ever appeared as blurred shapes on a blue and green canvas. I naively believed that everyone saw the world the same way I did until I got my first pair of glasses. Life was much simpler then.

I was diagnosed with Kerataconus, a corneal eye disease, when I was 11. It wasn’t a big deal, really. I wore two sets of contacts for a year to help push the cones back to in an effort to keep the corneas healthy. I had no real issues, other than my vision continued to decline at a higher than normal rate. But by the time I was sixteen, and ready to get my driver’s license, it was obvious that glasses weren’t enough to help me see clearly.

My life was forever altered on September 10, 2014 when we met with a corneal specialist to discuss my worsening Kerataconus. The very first test produced unexpected results. So unexpected, in fact, that the technician conducting the test shut the machine down, restarted it, and then we repeated the process. The second test didn’t go any better, but he didn’t tell me what was wrong, either. After gathering data from a few other tests, the corneal specialist came into the room where my mom and I were anxiously waiting, and a look of concern crossed his face. It was almost imperceptible, but I could tell something was not right. Instead of telling us what he suspected, he asked to conduct a few more tests. Even though they say that you can’t fail a test at the doctor’s office, I knew that I wasn’t doing well in these new tests.

Each test was more annoying than the last, and I was getting a massive headache. Not once during the testing was I told what was wrong. On the final test, the doctor asked me to look at the his nose, and tell him when I could see his hands come into view. Thinking that it was a trick, I thought his hands never even came up until they were right in front of his face. My mom gasped. She knew what was wrong, but I didn’t understand that his hands had been moving from an outward position toward his face the entire time.

“You won’t be needing a corneal transplant,” the doctor told us. I was so confused, why after all those tests would he say that I didn’t need to have an operation to fix my eyes. He looked at me, took a deep breath, and said, “You won’t need surgery because that’s not what’s wrong with your eyes. What you have is unfixable. It’s called Retinitis Pigmentosa, RP for short. Your retinas are slowly losing pigment, and one day you will be blind.”

My world began to churn. What did he mean? Was I actually doomed to see my world through a smaller and smaller hole, until it all faded to black? The doctor had no answers, but asked that we wait to visit with the retinal specialist in the office to get additional answers. The waiting was awful, and it was nearly an hour before he had time to meet with us., Even then he was unable to give us any definitive answers because RP affects each individual so differently.

I fought back tears until I left the doctor’s office. I was supposed to go back to school, but mom and I agreed that I needed time to process the whole experience. As we drove home, I finally let the tears trickle down my face. All I wanted to do was go back to a time where I didn’t know the truth, and ignorance was my comfort. I took off my glasses and let the haze envelope me.”

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