My name is Anna Khutoryan, and I am a proud Ashkenazi Jew. My family found out that I was born deaf when I was a year old. They also noticed that my balance was weak, which is one of the characteristics of Usher Syndrome. My parents then found that I have problem with my eyes when we moved to the US from Russia and I was ten years old. During my early teenage years, a doctor finally told us that my deafness, balance issues and vision problems were all connected and that I have Usher Syndrome. I grew up communicating in both Russian orally and Russian Sign Language and didn’t begin to learn American Sign Language and English until I moved to the US.
I remember when I was in middle school, people made fun of me for having poor vision. I struggled focusing on people signing to me. I often misunderstood what people were saying to me when conversing in groups as I couldn’t see everything that was being signed to me. I also remember when I was younger and played football with a group, I noticed that I have blind spot on bottom of my eyes because I was always falling down when if there was something on the ground that I couldn’t see. Then while I tried to continue to stay involved in sports, a teacher told me I could no longer be allowed to play sports because of my eyes. I was so upset and I felt left out of the group. I also felt that I wasn’t normal.
When I finally understood the struggles of having Usher Syndrome during my senior year in high school, I began not to accept myself. However, when I went to Gallaudet University, I met many other students with Usher Syndrome during my first year. I became so grateful to learn that I wasn’t alone.
During my senior year at Gallaudet University, I was finally accepting myself more when I went to Seattle for a summer internship at Seattle Lighthouse for Blind. As the organization provided activities and social events for deaf-blind people, I met many deaf-blind people there, including a few who were Jewish too. They became my family. While interning there, I learned a great amount of information including how to use tactile signing, tips for communicating with other people, and understanding the cause of Usher Syndrome. It was an amazing experience for me as they really inspired me to live a fulfilling life.
When I joined a Facebook group for Jews who have Usher Syndrome, I learned that I could possibly have Usher Syndrome Type 1F because of my background. I then finally took a genetic testing, and it confirmed that I have Type 1F.
I notice that my eyes are getting slowly worse, as I can no longer see at nighttime. Also, when I go to clubs and bars with friends, I can’t see at all, I feel like I am wasting my time for coming and having no fun. I am really tired of feeling left out all the time while my friends are having good time at different parties and social events. However, I’m fortunate to have parents, family and friends who are very supportive and make me feel safe. Sometimes when I go to a bar or club, my friends will be always there for me and make sure that I am not left out by communicating clearly with me and there is a spot with lights for me.
There are so many things I like to do that really depend on my eyes. I’m very adventurous and travel. I like to see many historical buildings, and explore cities and learn about other cultures. I also love activities in the water, like riding a horse, swimming, and boating. I like to climb and hike on hills or mountains. I love to smell multicultural food. Without my eyes, I only can smell, taste and touch, which doesn’t give me enough. I need my eyes to see everything interesting and to be fully independent for travel. I also like to see the sunrise or sunset, which calms me down and relaxes me. I also love the art community and love to take photos.
Right now, I am living in a city and enjoying every very moment of my life. I have been accepting who I am myself and grateful for what I have today. I have a lot of hope that there will be cure for Usher Syndrome Type 1F.