User Stories

“The Key Is Being Comfortable With Yourself And Your Cochlear Implants” – Linnea’s Story

Linnea from the United States loves drawing and horseback riding, she is a university student – and a bilateral cochlear implant user. For her, her hearing loss – caused by Usher’s Syndrome – was never an obstacle in reaching for the stars and living her life to the fullest. Find out more about Linnea’s inspirational story and read on to learn more about how she has mastered mainstream school with her CIs and how she is now able to live her dream:

My name is Linnea and I am twenty years old. I’m from Tampa, Florida and currently attend school at the University of Central Florida in Orlando where I’m pursuing a degree in Character Animation. As you may be able to guess from my major, my number one hobby is anything art – I love to draw! I also do horseback riding, and I am on the Hunt Seat Team, the horse-riding team, at my school.

My Hearing Journey With Usher’s Syndrome

I was born profoundly deaf in both ears, but I falsely passed the newborn hearing screening. My parents didn’t find out until I was around one, when they happened to play a tennis match against an audiologist! From there, I was re-tested and found to be deaf. I received my first cochlear implant when I was one and a half, and my second when I was eleven. So, I’ve had a cochlear implant for about eighteen years. I was implanted with MED-EL, and currently use a SONNET audio processor, and occasionally the all-in-one single-unit processor RONDO for its swimwear.

For a long time, we had no idea why I was deaf we just assumed it was a random birth defect or genetic anomaly and didn’t think much more of it. However, when I was around fourteen, we discovered by chance that I don’t have the full range of peripheral vision that everyone else has. In other words, I have “tunnel vision.” This discovery led us to the eye doctor where I was diagnosed with Usher’s Syndrome, a rare genetic disease that causes both deafness and vision loss to varying degrees.

Cochlear Implants And Mainstream School

I’ve been mainstreamed in school my whole life, all the way from kindergarten to where I am now, a Junior in college. I suppose what I liked most about the experience was simply to grow up as just a regular kid – I never had to feel like I was different or an outcast. Mainstream school means interacting with a wide variety of peers and teachers, having a plethora of opportunities available and experiencing all the things you would expect a school-age child to experience. It also taught me to navigate a hearing world with hearing peers and all the skills necessary to do so.

I think the biggest takeaway from public mainstream school was gaining the ability to advocate for myself and not being afraid to speak up and ask for anything I needed.

However, mainstream school was not without its challenges for me – for example, the cafeteria was extremely loud and rowdy with a lot of chaotic background noise, which did make it difficult to really socialize at lunch. Sometimes the FM system would stop working so I would have to troubleshoot in the five minutes between classes. There were several times where a teacher was struggling for ten minutes to get captions on the old DVD player from the 90s and I struggled to resist the very real and very strong urge to just say “That’s okay, you don’t need to!” Technology is tricky at times, whether it be the assistive listening devices or your implants themselves, and those challenges on top of the challenges of not having quite the same sense of hearing as your peers means that sometimes the going gets a bit bumpy.

Yet, despite all the strange situations and obstacles thrown my way, I graduated high school with a 4.2 GPA from an accelerated college readiness program and plenty of friends. I’m very glad I went through the mainstream school system, and I believe it was instrumental in my development into who I am today.

A Little Extra Help: Assistive Listening Devices

I did use assistive listening devices on a daily basis, namely various different FM systems throughout the years. I would have a kind of device that plugged into or connected to my processors and give the teacher a microphone transmitter that streamed to it. It was simple to use and unobtrusive, which is perfect for something that’s just meant to give me a little extra help if the teacher is far away or if the classroom is loud. I grew up having to explain to each year’s new set of teachers that I was deaf and that they would be using the FM, and that I may ask for captioning or front row seating etc. This made me very comfortable talking about my deafness and my accommodations, which has certainly been helpful in other aspects of life as well.

Enjoying University Life

I am currently living my dream: Studying Character Animation at the University of Central Florida. Animation has always interested me – I grew up on cartoons and animated films and loved them, and that plus my affinity for art and drawing lead me to this career choice. I love the idea of taking a character and breathing life into it just by drawing. It takes a lot of patience and hard work, but I find satisfaction in finishing an art piece and would love someday to see a show or movie I worked on play on the big screen.

I love being at university! I think the thing I like the best about it overall is simply the freedom that you have. At university, you pick your major and thereby guarantee that every class will, at the worst, guide you towards your future job and, at the best, be interesting and engaging in the process. Interacting with my peers in these classes has given me some great friends and allowed me the opportunity to meet like-minded individuals.

My Advice For Others

The biggest piece of advice I can give is to not be afraid to advocate for yourself and your needs.

The key to this is being comfortable with yourself and your cochlear implants I don’t see my implants as something separate from myself. They are a part of my identity and are my sense of hearing, not something to feel ashamed of or hide.

Developing this degree of comfort and security takes time and effort, especially if you are receiving your listening devices later in life, but it is well worth it! It allows you to speak up for yourself and ask for things you may need, whether it be requesting that someone repeat themselves or asking for captioning on a video. Advocating for yourself is vitally important when you have needs that most of the population do not, because they will simply not think of such things on their own.

Whether you are an adult with listening devices, or the parent of a hearing-impaired child, or a teenager who grew up with their CIs or hearing aids,

it is important to remember that we are just as capable as any other person. Our hearing is not something that should be holding us back dream big, and live life!

Dreams And Wishes For The Future

I wish to be part of an animation studio someday, working on films or TV shows. My nearest goal is simply getting a job when I graduate in a competitive industry, and I suppose my most distant goal is to someday be the lead of a creative team or a head storyboarder. Outside of career goals, I want to travel and see more of the world sometime.

Thank you, Linnea!

Read more about Lia, a young MED-EL CI user with Usher Syndrome, and how her parents want to do everything they can to save their daughter’s vision.

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