User Stories

The Freedom to Choose: Sarah’s Story

For many years, Sarah from the United States did not want to have a cochlear implant. But when she trained as an audiologist, she discovered that hearing implants would give her the freedom to choose how to communicate. Recently she got her second CI and captured her experiences at the activation on video. Read more about her hearing journey and why she decided to share her activation experiences.


Cochlear Implants? Never!

I was born with typical hearing and am not exactly sure of when I began to lose my hearing, but moving quickly from, “Hearing loss is awful,” to, “This is who I am. It’s part of my identity,” was an important part of my journey in my twenties. More than anything, I wanted to be an example for others that hearing loss does not have to be wholly negative. If someone had asked me a few years ago if I would ever consider getting cochlear implants, my response would have been, “No way! Nothing is wrong with me. I don’t have a problem that needs to be fixed.” That was how I felt about cochlear implants for a long time – both before and after my progressive hearing loss had reached the point of CI candidacy.

The impression I had of CI technology was that people who use it see themselves as broken and view deafness as a tragedy. I could not reconcile that with my own perspective that deaf and hard of hearing people can be successful just as we are, with or without hearing technologies. I was satisfied with my communication, involved in both the Deaf and hearing communities, and working to improve my American Sign Language skills. I had convinced myself that cochlear implants were not an option for me.


The Wheels Start Turning

In my early thirties, I decided to change careers and enter an Au.D. program to become an audiologist. I chose Gallaudet University because I wanted to work with signing deaf and hard of hearing children and to learn how to provide audiology services within the signing Deaf community more generally.

Over time in my clinical experience, I was exposed to more and more patients who are signers and use cochlear implants – all the while maintaining a proud sense of Deaf identity.

I puzzled over this and engaged in many challenging conversations about the topic of CIs, and slowly my perspective changed. Not all people who use CIs view themselves as broken.

At the same time as this was happening, I was experiencing another drop in my hearing. I had my hearing aids reprogrammed, but I was not getting much benefit from them anymore. I was struggling to hear in clinical situations with non-signers, especially pediatric patients. I knew in my heart that I wanted to become a pediatric audiologist, and that most of my future patients would be non-signers with typical hearing ability. After a great deal of soul searching, I decided that I wanted to prioritize communicating directly in clinic with all my patients – signers and non-signers. The only way I was going to be able to do that was with cochlear implants.


Receiving Cochlear Implants

I had my right ear, which has a complicated medical history and has always been my worse ear, implanted first. I had a difficult start with my first implant, which included some problems caused by a fluctuating air pocket between my skin and the internal device. After a few weeks, I started to notice the benefit when I was in clinical situations with non-signers. Although I had much more auditory access than I had ever experienced with hearing aids, small children were still difficult to hear. Because of this, I decided more than a year later to get a CI for my left ear too.


My Second CI Activation Video

As I went through the candidacy process again, I began thinking about the near non-existence of CI resources available in ASL. I wanted to use my audiology education as well as my personal experience as a CI user to explain the CI activation process in a way that would be fully accessible to all deaf and hard of hearing people. I recorded my entire second CI activation appointment, saved footage of all the key parts of the activation, recorded commentary from me in ASL, and added English captions for non-signers too.

I wanted this video to be a gift to my community, explaining the most confusing parts of a difficult audiology topic. I wanted everyone who might see it to know that CI activations are not as they seem in most activation videos: there is much more to the process than the audiologist making a few clicks on a laptop and the CI recipient suddenly being able to hear.



Goal Achieved

Since creating the video, I’ve made a lot of progress with my second CI. I’m completing my final year of clinical education at a major children’s hospital, and I’m happy to say that I can converse equally well with children who communicate in ASL and children who communicate in spoken English. That was my goal, and I’ve met it!

The greatest gift that my CIs have given me is complete freedom in choosing how and when I use my ears. How and in which language I communicate in different situations is entirely up to me, and because of that I have so many opportunities that I would not have otherwise.


Thanks, Sarah!

Interested in more first-hand experiences of an activation? Read how Claire describes her first fitting and the first months with her CI, and find out how Matt experienced his activation


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