To The Question: Have You Always Been Blind?

Well, actually, I am not blind; the correct term is visually impaired. I remember being in second grade and crying to my parents that I could not see the black board at school. My parents took me to the doctor and sure enough, I needed glasses. When I was between the ages of 10 and 12, I was sent to Bascom Palmer Eye Institute in Miami. I was diagnosed with Retinitis Pigmentosa (RP), which is a progressive eye disease of the retina. I inherited it from my father's side of the family. For about ten years, my two sisters, father, and I, went yearly to the Eye Institute for research purposes. As a teenager, my parents and I never discussed my eye condition. I was never treated any differently. I went through regular public schooling and had endured my struggles. I would get by by asking people if I could copy their notes from the board.

I was also very involved in sports growing up. I was on a swim team, dancer, track and field team, and practiced judo. Thinking about it now, each of those sports were a challenge for me, especially at night. RP first progressively takes your night vision and as a child my night vision was already poor. I did not realize how differently I saw compared to others. Sometimes, I had a swim meet at night or dance performance in dim lighting. I also had to train and compete in judo tournaments without my glasses. Contacts were not an option for me then.

The term night blind was never used when I was growing up. I never thought of myself as being partially blind. I used the term partially blind because my day vision was still in the legal limit to drive. By the time I started community college, my "eyes were opened" you can say, to my condition.

In community college,I had to write an essay. I had a hard time seeing the lines on the paper the teacher handed out. I will never forget my experience. The whole class was quietly writing and I went up to the teacher and whispered to her "I hope that you don't mind that I wrote on my own paper because my eyes are bad and I can't see the lines". She said out loud, "What? I am hard of hearing." I wanted to die! Here I was trying to be discrete, and the teacher was getting the whole class's attention. I had to repeat myself. My teacher gave me a paper with a room number an told me to go there. I had know idea what was about to take place.

In the room was a blind man. He was sitting at his desk. I told him I wasn't really sure why my teacher has sent me here. After speaking with him for a few minutes, he asked me if I had RP. I was surprised by his knowledge. The man asked if I understood what the prognosis of RP was. I did not, but did not want to sound unintelligent. So I said, yes. Then the shocking statement came when he said "so, you know then you could eventually go completely blind?"

At that moment, I had felt like someone just sucked all the life out of Me. My cracked voice told him that I had just learned something about myself . He was very compassionate and gave me his contact information to educate me on the assistance the school can provide to make school easier with my limitations.

As soon as I walked out of the room, I literally fell against the wall. When my Mother and Grandmother picked me up,I told them what I had just learned. My Grandmother does not speak English well so when I saw the look my Mother gave my Grandmother as she translated what I had said got me angry. I felt like I was given information that they were hiding. I went to my room and cried.

The question that I contemplated was "why didn't my parents tell me?" Since we never discussed my eye condition, I didn't feel comfortable bringing it up. Like when you are ready to wear a bra but nobody brings you to buy one :) I just figured that they did not want to worry me or maybe cause my mind to speed up the progression of the disease.

I just went about Life and got my driver's license. I drove for about 4 years. Eventually my day vision decreased and I could no longer drive at all. Next on my journey, I started going to the Light House for the Blind. This place provides skills to make daily function easier for people with low vision. I also learned how to walk with a cane.

RP is challenging because you don't really fit in the sighted world or in the blind world. I know I have been blessed in the sense that I have been able to experience both worlds. Not many people would think being blind could be a blessing. For me, I have seen things that sight could not reveal.

Janice