I am 46 years old, living in Hod Hasharon, Israel, in central Israel 30 minutes north of Tel Aviv. I am married and the mother of a 12-year-old hearing daughter.
I was born in Haifa, Israel, to a normal hearing family. I was born deaf with Usher Syndrome, when I was 9-months-old, my mother noticed that I did not hear when a strong wind slammed the door. Mom was shocked and I was quiet, and so mom became suspicious and tested me as she opened the door and slammed it hard. After she did it 3 times, and I did not respond, she knew I was deaf. She took me to doctor who confirmed that I was deaf.
I saw well all my childhood until the age 10. We moved from Haifa to Tel Aviv to Hod Hasharon, and I attended the best school in Tel Aviv. At age 10 I started not to see well at night. At ten-and-a-half years old, the school gave vision tests to all students annually. The nurse noticed I did not see well at a distance and so sent me to regular eye doctor. He found something wrong inside my eyes. My parents took me to the hospital where we spent hours upon hours with too many tests. The doctor final said that I have Usher Syndrome and said that in the next 10 years I would be blind. It scared me a lot. He told me I have to keep my eyes well. I followed him and was watching myself. Over the years, I learned to deal with my Usher Syndrome. After 10 years, I still saw well and thought that the doctor was maybe kidding
I graduated from high school with a diploma, never letting my Usher Syndrome interfere with my life and did many things.
At age 20, I moved to the United States and attended Gallaudet University. A Deaf-blind organization at Gally kept sending me a letter to join, and I always threw it away. I was acting as normally and always went with normal friends.
I graduated in 1995 from Gally with a BA in Psychology and moved to New York City, lived there for 5 years and worked as counselor for deaf clients with mental illness in Manhattan. It was hard working with them as I sometimes missed their earlier warning behaviors. It was hard work with my vision. After 5 years, I finished working with the deaf clients with mental illness and also felt I’d had enough living in the United States and decided to move back to Israel. At that time, I had a boyfriend, and he asked me to move to Maryland. In 2000, I moved back to Maryland, got married to him and had a baby girl.
In 2005, I ended my marriage and decided to move back to Israel for a few years to be a little closer to my family. I also wanted my daughter to get more of a Jewish education and Jewish life style plus to be strong in the Hebrew language, and so my daughter made aliya to Israel. Once I moved back to Israel, I joined a deaf-blind organization called Beth David in Tel Aviv. I started working as counselor/advisor for deaf-blind clients helping them with their life struggling with their deafness/blindess. I worked during 8 years at a deaf school in Jerusalem counseling Deaf-blind clients. Most of them were Arabic clients who were deaf with Usher Syndrome. I also counseled some Jewish deaf-blind clients all over Israel. Today I am working once a week helping a family whose mother lost her vision. I’m helping them and the mother to deal with the difficulties.
I am involved in the board of deaf-blind in Beth David helping the group to have more meetings, and get together for trips and activities.
I also am very busy socializing with normal friends and am right now building with one friend a support ladies group at Helen Keller with one of social workers there. We will have meetings once a month for various activities
In the past, I was chairperson of 3 groups, a singles group, Kodai group, and a women’s group, I planned a lot of activities, parties, etc. Then I asked to step down from being chairperson because I had met a new man who is my husband today, and at that time I wanted to focus on my relationship with him so had less time. I gave my responsibilities to another person to take over, and then all groups stopped.
I always fight with my visual problems to be normal with everything. When I was young, I was not afraid and was brave and did everything. Today, as I am getting older, I have feelings of fear so prefer to have a person escorting me to help me, especially during nighttime.
I am also active with a Deaf-blind organization in Maryland as every 2 years there is Jewish Deaf-blind conference that I continue flying there to attend.
A few months ago, I learned there are various types of Usher Syndrome, and so I went to have a blood test and learned I have Usher Syndrome type 1F!