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Rachel’s Story

Written in 2010

Over 20 years ago, I did not understand what sounds meant to me. Every morning for the first few weeks, when I was a rough little three-year old child, my mother had to sit on me in order to get the magnet on my head. I know that sounds cruel of my mother, but I am grateful to her for doing this because she has taught me that it is unimaginable to live in a silent world. Today, I understand that every morning, when I wake up and put my cochlear implants on my ears, I am welcomed to the broad spectrum of opportunities, which include being able to learn a second spoken language, French.

I was born profoundly deaf. Because the most powerful hearing aids did not help me and my parents did not want me to sign, they decided to opt for the cochlear implant. In 1989, I became one of the first 200 children in US to receive a cochlear implant as part of the FDA clinical trials. When my parents and I traveled to New York University, they hoped that I would at least hear traffic noise and other environmental sounds necessary for safety. However, our expectations with my cochlear implant were quickly surpassed. I attended Auditory-Verbal therapy to learn to hear and to speak, and within six months I made tremendous progress and was beginning both to understand what people were saying and to speak.

During my young childhood years, I continued to go to Auditory-Verbal therapy to improve my hearing and speaking skills and my language. I always had to leave school a half hour early to attend sessions once a week. This never bothered me as my parents taught me that attending therapy sessions was going to pay off in the future, and it did as my language is now caught up. I am one of those people who can easily fool others into thinking that I am a normal hearing person. Sometimes when I tell people that I am deaf, they are astounded and refuse to believe me.

In 1994, I was selected to be the 1994 Better Hearing and Speech Month poster child of the year.  I was featured on the poster with Lionel Hampton, an American jazz vibraphonist.  I went to New York and to Washington D.C. to give speeches and to meet with politicians about cochlear implants when I was the poster child.

In order for me to be part of the hearing world, my parents placed me in mainstream school settings so that not only could I learn to hear, speak, and communicate, but also to be an independent hearing person. Thus, I attended mainstream schools throughout my life where I excelled and received honors. I was also very involved in extracurricular activities throughout my school years, including student council, National Honor Society, Film Club, French Club, and I also had officer positions in some of these activities.

When I was ten years old, I received the Dr. Bill Award, an award that honors someone’s efforts in advocating the benefits of cochlear implants in children, at the Cochlear Implant Club International Convention in Sturbridge, Massachusetts.

When I was in eighth grade, Because I wanted to create an awareness about cochlear implants, I created Cochlear Implant Online.  I entered this website in the technology fair, and I won first place in Fulton County level and first place in the Georgia state level under Internet/Intranet category.

When I was a freshman in high school, I created a documentary film about cochlear implants, which submitted to my high school’s film festival, and I won the Best Documentary film and the Best Overall film.  During my sophomore year in high school, I created a documentary film about a young girl who was born profoundly deaf and hears with a cochlear implant, and she also has a few physical disabilities, and won the Best Documentary and the Best Overall film.  This film was also submitted to the Fulton County Technology fair, and I won first place in the multimedia category.  Then I preceded to the state level, and I won first place at the Georgia state level.

During the spring of my eighth grade year, I had my first Individualized Education Program (IEP) meeting for high school. “High school is such a big transition,” said my Mom anxiously. I brought up one of the more controversial subjects for hearing impaired students, studying a foreign language. In particular, I wanted to learn French, but the special education coordinator was adamant that I wait until tenth grade, saying that it was very difficult and would move too quickly for me to grasp. However, I was insistent that I not only wanted to study French but that I also wanted to start in ninth grade. To my surprise and dismay, my mother agreed with the teacher, which had me in tears. I had no fear of the challenge because I had already faced and overcome so many challenges in my life related to my hearing, and I am a very motivated and persistent student. I continued to fight back tears, all the while steadfastly maintaining my determination to take French in the ninth grade. Finally, the IEP team agreed to let me try. At the conclusion of the meeting, the special education coordinator said to me with a very skeptical smile that she hoped I would get an A in French.  Not only I succeeded in getting an A in French I, but I took French honors all the way through AP French in high school and became fluent in French.

Besides learning French in the classroom, I had the opportunity to pursue my passions in French further by being a member of the French Club during all four years of high school. During my junior and senior years of high school, I was elected to be the president of French Club, where I organized events such as movie, museum, and French restaurant outings, and French cooking, singing Christmas Carols in French at a nursing home.

During my junior year, at an honors night, I was given an award that is normally given to seniors, the Karin Holzer Foreign Language award, an award that is given to only one junior or senior out of 800 juniors and seniors for being the most outstanding foreign language student. In my senior year, my French teacher entered me in the statewide foreign language competition, Foreign Language Association of Georgia, and I was awarded superior, the highest score, at the most advanced level.

I traveled to France several times in since my first trip to France when I was 17 years old and stayed with various host families where I had the opportunity not only learn a different lifestyle, but also pick up new French vocabulary words and idiomatic expressions through listening and conversing with family members.  I also made several friends and have revisited them a few times.  This past fall, I studied in the Provence region for two months where I had the best time of my life. (You can read more details about my studying French here.)

When I was 17 years old, I received an implant for my other ear so that I could hear bilaterally. I am certainly hearing better with two implants, and everything sounds richer and fuller.

I also have a younger sister, Jessica, who was born profoundly deaf. She received her cochlear implant at NYU too so that she could be implanted at the age of 15 months. At that time, she was the youngest child in the country to be implanted. She also received a second implant when she was nine years old. She is now in middle school and is doing beautifully like me. We have a brother who is 17 and has normal hearing.

When I graduated from high school with honors including a Faculty Cup, an award selected by the entire high school faculty for having demonstrated the greatest academic, leadership, social, and personal development, I felt that this marked the end of my overcoming obstacles.

About a month before I started my first year at Savannah College of Art and Design, I was at the optometrist to have my eyeglasses prescription checked, and that one appointment turned my life around.  The optometrist noticed that I was reading the first and last letters incorrectly, and this sign alerted her to check my eyes.  She noticed spots in my eyes, which meant that there was a possibility that I had retinitis pigmentosa.   Fortunately, my father, who is a surgeon at the hospital where my appointment was located, was able to immediately put me contact with an RP specialist.  After hours of testing, including the visual field and the ERG and different specialists looking in my eyes, my diagnosis was confirmed.  I was hit with a new obstacle.  I felt that I had fallen down the ladder, and I had to climb back up to reach a star.

After a few days of tears and worrying, I eventually moved on by not thinking about my diagnosis of RP and thinking, “Today is the present.  That is why it’s called a gift.”  I just enjoy my life and all the usable vision that I have now.

My family and I certainly did go through some moments of ups and downs during the first year, especially when I was advised to transfer to a liberal arts school as my parents were concerned about my future.  While I understand that my parents don’t want me to be disappointed about my future if there are no treatments by the time I need them, I want to enjoy what I love to do while I have good usable vision and just wait to deal with the obstacles when the day arrives.  Also, because there are so many potential future treatments, if an effective treatment for RP arrives, I don’t want to feel that I have wasted my time worrying, and I don’t want to feel disappointed that I could have stayed with my desired path, which is to be a photojournalist.

A year ago, a group of parents on a listserv for parents of cochlear implant users, CICircle, wanted to create an awareness of cochlear implants as cochlear implants are still widely unknown today by the general population.  I stepped up the plate and designed several t-shirt designs relating to cochlear implants including theme designs such as Halloween and Valentine’s Day.  I raised over $200 to donate to non-profit organizations.

Recently, I illustrated two children’s books that were both written by Elizabeth Boschini, Ellie’s Ears and Happy Birthday to My EarsEllie’s Ears features a character who happens to be born deaf, but hears with a cochlear implant.  She explains to her new classmate about cochlear implants by telling her story about how she received her cochlear implant.  Happy Birthday to My Ears features a deaf boy who recently received a cochlear implant and is learning to hear new sounds.  This book is geared towards for kids who are two to three years old and it teaches the children variety types of sounds.  All of the profits from the book sales are going to various organizations that help children learn to hear and to speak.

Elizabeth is currently in graduate school at Fontbonne University studying to become an Auditory-Verbal therapist, Speech-Language Pathologist, and Oral Deaf Educator.  We met each other through an AGBell group on Facebook, and we became good friends.  She is also an active guest blogger who provides invaluable information for my website, Cochlear Implant Online.

Elizabeth, I and other stakeholders from diverse hearing-loss backgrounds founded Deaf Village, the blog aggregator, in 2008 and continues to expand.  Today, it has over 300 contributing blogs from writers who represent the full spectrum of the deaf experience — people who sign, cue, and speak in many different languages; parents, professionals, and teens and adults with hearing loss.  There are blogs from people with differing viewpoints who have made varied choices about their hearing loss, but regardless of our differences, we are united by a mutual respect for each person and each family’s decisions.  And, as always, ALL entries are captioned — whether spoken, signed, or cued.

In 2008, I traveled to Australia where I was given an opportunity to give a talk at Cochlear LTD. in Sydney about my life as a cochlear implant user and also at Cora Barclay Center in Adelaide about the benefits of bilateral implantation.  When I was in Adelaide, I stayed with Naomi Higgs, the co-founder of CICircle, who has a son who is deaf, but speaks and hears with a cochlear implant.  A few months after the trip to Australia, I had the opportunity to finally meet Elizabeth in person for the first time and give a talk at her school, Texas Christian University, about my life as a cochlear implant user.

I graduated Summa Cum Laude in 2010 from SCAD where I pursued a BA in photography, a major that I absolutely loved very much.  I was also a features editor for the school newspaper.  Being involved with the newspaper has given me peace of a mind that I have a back-up plan to be a journalist if the RP treatments do not work out.

In 2010, I was honored as Cochlear Corporation’s “Hearing Hero.”  I also completed a two-month summer internship program at Cochlear Americas, began graduate studies in anthropology in London, and was re-hired by Cochlear Americas several weeks after the two-months internship to be a marketing intern while living in London

I am still currently advocating for cochlear implants and hearing and spoken language by blogging on Cochlear Implant Online, creating t-shirts, and being active in the Cochlear Awareness Network.

Speaking of my statement, “I felt that I had fallen down the ladder, and I have to climb back up to reach the star,” after a lot of thinking since my diagnosis, I realize that I actually did not fall down the ladder because I did overcome the deafness part.  I was just simply given another ladder to climb up, and now, I’m just dealing with the blindness part.