Jessica Chaikof January 2, 2018
Every single day a person with Usher Syndrome faces numerous obstacles, such as getting to places, seeing at night, or hearing his or her friend in a noisy situation. These challenges are tiring and frustrating because they are never ending. As somebody, who has Usher Syndrome Type 1F, I face this long and winding ladder that presents itself with hurdles that attempt to prevent me from going up to the next level. With perseverance and determination, I can overcome these obstacles. There is no denying that they are exhausting to deal with at times and, on numerous occasions, I have wished that I could just stop and do nothing. As they always say, “The show must go on!” Therefore, life must go on because you cannot stop living, even though you are worn out from dealing with the challenges Usher Syndrome presents.
According to the Merriam-Webster dictionary, a syndrome is, “a group of signs and symptoms that occur together and characterize a particular abnormality or condition.” Usher Syndrome is just that because there are two branches—blindness and deafness. Fortunately, we are living in an era where technologies such as the cochlear implant are available. The cochlear implant has enabled millions of deaf people to hear and break down barriers for opportunities that the world has to offer. The cochlear implant enabled my sister, Rachel, to join the Peace Corps in Cameroon and to communicate with the locals in their language. Since I can hear and speak, I can attend a mainstream school and be challenged on the same level as my hearing peers. Many people including myself often say, “I would not be the person I am today without the cochlear implant.” While cochlear implants allow us to hear, they do not solve the problem of blindness.
As a fully-functional young adult in her early 20s, I am living my life as independently as possible. While I can live a “normal” life, I am still struggling due to my declining vision. Since childhood, I have loved going to planetariums and seeing the different constellations and planets. Last summer, I visited the planetarium at the Boston Museum of Science with my friend. As the guide went to point out Ursa Major, one of my favorite constellations, I could not see it! All that appeared to me was pitch darkness and no Ursa Major. I was puzzled and distraught over this. I told my mom what happened and she said to me…
“Usher Syndrome is a progressive disease, and that’s likely why you couldn’t see the planetarium display. However, when you get cured we will take you to one.”
My shoulders slumped, and I thought to myself, “Thanks Usher Syndrome for making my life more complicated than it needs to be.”
Imagine being told that you could no longer do the thing you loved the most due to your disease. While my love for planetariums and seeing the planets and the stars may sound simple to someone else, losing that opportunity sounded like the worst thing in the world to me. Having that taken away was not my fault at all because I did nothing, and yet it happened.
Despite my disease, I have traveled the world and been to many different places—Australia, South Africa, Denmark, Germany, Poland, and many others. During my spare time, I do ceramics and origami and, most recently, have been teaching myself basket weaving with rope. My greatest fear is losing more vision because it will continue to prevent me from doing the things I love most. I am now in college majoring in Sociology and minoring in Chemistry with hopes of going into research and teaching. To be able to continue reaching towards my dreams and goals, I need to retain and restore my vision.