By Anna Khutoryan
I grew up in both the hearing and deaf worlds. Communication is very important to me. My native language is Russian. I communicate orally with my parents and family. I have lip reading skills that depend on my eyes. Until now, our communication has been very effective because of my good vision. I am very close with parents. Our relationship has always been like a delicious cookie. If my vision declines I will be isolated in a dark place. Then, our relationship will be like an Oreo without the cream: empty and tasteless. American Sign Language is my third language. This language has a unique and visual expression. My vision must be good so I can visually perceive hands, body language and facial expressions. I am a social butterfly, and my good vision allows me to socialize with people. I am afraid that my vision will get worse and I will lose my social life and communication with my parents, family and friends. I don’t want to be isolated in a dark place. It feels like my world is going to end and I will lose everything.
I’ve been living with Usher Syndrome for many years. I have noticed things change from past to present. For instance, I remember when I was young I was able to communicate with large groups successfully. Now, I have a hard time catching every word in large groups. It makes me very frustrated that I miss a lot of information. I have no choice and have to communicate in small groups. That is very upsetting, frustrating and challenging for me. I am tired of missing a lot of information or asking people to repeat. I remember when I was young, at night time I was able to walk independently, but now I have to depend on people for help. I don’t like to hold my family and friends’ hands or arms to walk at night time. I really hate to lose my independence. I am very frustrated that I am not able to see down stairs, so I always ask family and friends for help. When I look down stairs, I can’t see the division between the steps and it looks flat. This challenge causes me more and more suffering every day. In addition, I am fed up with looking for small things like pens, pencils and pins when they fall on the floor or somewhere. This is too much stress and work for me to look everywhere. I get bumped by other people or I run into something on the floor because I can’t see. My legs get bruised. Although I am very outgoing, I am not able to attend bars or clubs often because they are dark. That really disappoints me.
I love to travel all over the world; I like to be independent and I do not depend on people during my travels. I love to see buildings, experience new cultures, and meet people. However, to do all of that, I depend so much on my eyes. I am utterly afraid to lose my independence and not be able to see every place when I travel. I hate to be left out. The fashion world is important to me. I love to see pictures, people, and read magazines to see new designs of clothes, shoes and purses. My parents and I always enjoy sharing about what we see when it comes to fashion. My passions are to travel all around the world, keeping up with fashion, photography, being involved with the arts community and culture. My passions require my eyes. I will be depressed when my vision gets worse. I will feel like I have lost everything. I want to have a normal life where I can do anything and enjoy every minute of my life. In addition, I choose happiness in life. I do not want to feel limited, not being able to participate, and losing the things I am passionate about.