Hi Everyone! One of our support group members and a very dear friend of mine would like to share her story with all of us. Here it is:
Hi, My name is Camilla Gilbert.
I was born with a congenital deformity call Bilateral Microtia type III, whichaffected the outer ear not to fully develop. Furthermore Microtia affected my hearing due to the lack of an ear canal on both ears and I was categorized as a deaf person. Living with Microtia during my childhood, adolescence, and young adulthood years I developed low self-esteem, isolation, and confusion. Furthermore I did not want to associate with members of the deaf and Hard of Hearing culture because they were viewed as weak or impaired individuals within our society. I just wanted to be considered “normal” within the hearing world and this led me to cover my ears and hearing aid with a headband every day until the age of 26. However in 2005 I began to change my viewpoint of my deafness and investigated who I was as an individual.
Previously I never knew name of my condition, I just referred to it as being different and wore a hearing aid and my ears were closed. I began my quest by researching and analyzing information online to determine the name of my condition. After a few different searched online I discovered the medical terminology for my deformity, Microtia. This began the process of locating others in the area that was born with Microtia; this led me to Ear Community.
Ear Community is a non-profit organization that offers supportive community for individuals who were born with Microtia and other related conditions surrounded around hearing loss. Ear Community’s website provided me with helpful articles related to different surgery procedures, new technologies, and advocacy information. Furthermore I was able to connect with others who were blessed with Microtia all over the world. I accepted and was comfortable with living with Microtia and started reaching out to others through Facebook on the Ear Community page. This led to group discussions and empowerment for myself and to others.
Ear Community began to have different picnics over the world and in 2013 there was one hosted in Columbus, Ohio. I was excited to go and was in amazement when I arrived at the picnic. I was surrounded by others of all ages with Microtia just like me. Children were playing and parents were asking professionals and adults with Microtia for advice. I felt like a superstar at the event for a condition that I used to be ashamed of. During the picnic I was able to engage with my peers, which included an individual by the name of Justin Bays. During our conservation he educated me on different technologies options that Microtia individuals have; one included the Oticon Medical Ponto Hearing Aid Implant. I was already aware of this new technology however to see and interact with someone current uses the device and spoke highly of it was inspiring. I expressed my concerns about getting the device due to fear of having surgery but Justin Bays ensured me I would be fine and that I would be happy with the digital sound quality.
Ten months later in April I was in the surgery room getting my first Oticon Medical Hearing Aid Implant and got my second device in August of the same year. If I would have never gone to the Ear Community’s picnic in Columbus, Ohio surrounded by my Microtia peers I may have never had the courage to have the surgery. My experience at this group event changed my life for the better and was very memorable.
Thank you so much for sharing your story with us Camilla! It was great meeting you in Ohio two summers ago at our Ear Community picnic. Camilla proudly wears the Oticon Medical Ponto Plus sound processor to hear life better because sound matters! Camilla was also Ear Community’s first college scholarship recipient and her family is a big supporter of the Ear Community Organization. Camilla is also a wonderful single mom too and is on her way to graduate school! Justin Bays is a member of Ear Community’s Board of Directors. Thank you Justin for passing on the information…you helped change someon’es life at our picnic!
We are so proud of you Camilla!
– Melissa Tumblin
Founder and Executive Director of Ear Community