I am deaf in my right ear and hard of hearing in my left ear. Both since birth. My mom had Rubella when pregnant with me resulting in my hearing loss. I got my first hearing aid at the age of 30 in my left ear. Total deafness in my right ear.
Three years ago I got tired of people walking up to me and whispering in my deaf ear. I wouldn’t even know they are there. So, I got a tattoo behind my deaf ear that says “Out of Order”. Now people see the tattoo and ask what it means. I am bald from alopecia universalis (and am the Chicagoland National Alopecia Areata Support Group Leader), so my tattoo is very easy to see. This tattoo has been a conversation starter many times.
I did a Walk4hearing in September 2019 held by the Hearing Loss Association of America. My friend, Christine, talked to me about the walk, so I went. There were reps from all of the cochlear implant companies there. I talked with Cochlear Americas and they encouraged me to get a CI audiology exam. She gave me the name and number of an audiologist who specializes in CIs to see if I qualified. I qualified, so pushed to get surgery by the end of the year. My activation day was Jan 13th, 2020. Surgery was dec 17th, 2019. I never thought I’d qualify for a cochlear implant. And, now I have one and am a volunteer for Cochlear Americas.
I like to decorate my head with henna (my friend Leah is a henna artist), so I was on the hunt for ways to decorate my cochlear implant when I got it. I created 100s of charms to go on the implant. I have pretty flower charms, crazy dragon charm and even googly eye charms (as well as a ton of others). I realized, once I got activated, the charms made me less self-conscious of being a bald lady with a weird thing attached to my head. I started wondering if it would do the same for others.
I belong to a Facebook group called “Cochlear Implant Experiences” so I put out there that I’d ship out free charms to the first 25 people who messaged me. Of course, I had over 60 packages that I ended up shipping out. The most fulfilling thing was to get the pictures from both kids and adults wearing the charms I made them. I have even made and donated (with the help of friends) hundreds of charms for a deaf camp. I try to post as many daily pictures of me with my charms as I can on that facebook group and put an inspirational message on as many of them as possible. When I hear someone getting a new implant or getting bullied due to their hearing loss, I reach out and send a charm or 2.
The funny story about my charms is one time a fellow alopecian, who happens to be an audiologist, loved the picture of me with my sunflower charm. She asked if she could post it and a story on a facebook group for audiologists. This group is a country wide group only for audiologists. A few days after she posted my pictures and story I went to a park district walking path when a woman ran up to me and said, hey, I love your charm. She then told me that she saw a picture on facebook of a woman with a charm just like that. I said, yes, that was me. She said, no, couldn’t be as it is a group just for audiologists. I said, yup, me. She acted like she was seeing a celebrity. She is an audiologist and her daughter has an implant. Then, on my next visit to my audiologist she mentioned she saw me on the audiology facebook group. Due to HIPAA laws she couldn’t mention she knew me, but she was smiling from ear to ear.
Having been deaf/HOH my whole life I do have many stories. But, I am still amazed by my implant and how it has changed my life. I cannot hear words, but I do have a sense of fullness and balance from it. I actually can “hear” in stereo. From no sound there is now sound.
Are you inspired by Amy’s Story?
The way Amy approached decorating her head with a tattoo, henna and charms was a total treat to my artistic mind. So much so that it was hard to choose which charm I wanted to portray. When I saw a picture of Amy with a sunflower on her cochlear, I felt a deeper connection there. Sunflowers were my mom’s favorite flower before she passed away of cancer over 9 years ago. Ever since, I’ve portrayed many paintings with this powerful flower, so it makes sense why I felt so drawn to portray Amy with it in this painting. What did you think of Amy’s story and painting?