Meet Shelby.
Hey there! My name is Shelby and I am behind the Instagram account, @living.life.with.a.purpose where I share my story living with single sided hearing loss and my life with a cochlear implant. My journey sure has been a rollercoaster with many ups, downs, and twisty-turns but I wouldn't change a thing, so come along with me as I share with you my journey!
Where It All Began…
I was born the first child in my family to my parents in April of 2005. As new parents, the last thing they wanted was for their baby to have any health issues, like many parents hope for. Little did they know my failed newborn hearing tests, which at first was presumed as a cause from fluid, would soon become clear that I was born with mild hearing loss just in my left ear. After more testing and no answer to the cause, my parents decided to wait off on a hearing aid until it was noticeably affecting me. Fast forward about 10 years later when I realized for the first time myself that I couldn't hear very well out of my left ear. We saw an audiologist who tested my hearing and that's when we took the steps to getting my hearing aid. We discovered my hearing dropped to moderate severe level hearing loss and it was a good time to get my first hearing aid (HA). When I got my HA I was in fifth grade and I remember being so excited to tell my teacher all about it and how I wanted a hot pink one so I could get my American Girl Doll a matching HA!
My HA ended up being beige (to match my hair and sink) and while it blent in, it was still noticeable, especially to curious fifth graders! I remember having classmates ask if I had my own personal music player in my ear (as air pods weren't a thing just yet) which I found so funny!
Why Is Everything So Quiet?
My hearing aid did me well and I had the same one up until roughly my sophomore year of high school. At this point I was about 15 and that's when I woke up one morning and noticed everything sounded a bit quieter than usual and my HA didn’t sound like it normally did. At this time it was also the midst of the pandemic so it was hard to get into the doctors so most appointments were scheduled over the phone as we tried to figure out why my hearing seemed to have dropped. Many months and countless doctors and ENTs later, we got into the Children's Hospital of Orange County (CHOC) where we were connected with my ENT, Dr.Pham. Through ordered testing from him, we finally discovered the cause of my hearing loss. An MRI revealed that I have a genetic mutation called Enlarged Vestibular Aqueduct Syndrome (EVAS), and that was the cause of my hearing loss and why it was continuing to decline.
This caused sensorineural hearing loss and I was told the hearing I had left would continue to diminish until I was completely deaf. At this time I learned about Cochlear Implants (CI) and what they could potentially do for me (you have to have a certain degree of hearing loss to be a CI candidate). The following year at about 16, I lost majority of the remainder of my hearing in my left ear and became an official candidate for a cochlear implant. Beginning the process of paperwork, approvals, and all the fun stuff (not really lol) we were just coming out of the pandemic which made surgery and scheduling a bit tricky. It wasn’t till October of 2022 (at the age of 17) that I had finally received my CI!
Senior Year, Surgery, and Recovery… Oh My!
This was my first surgery and it wasn't necessarily a small one either, which brought along all the nerves you could imagine! Surgery happened over my fall break of my senior year and I was expecting to return to school shortly after. I had a few setbacks such as longer effects from medications and I experienced severe vertigo for the first time in my life (from a mix of medications, the procedure itself, and my EVAS), and you can probably put together what happened from being dizzy and spinning… An overnight hospital stay was not expected but it happened anyway. I had the greatest team of nurses and doctors so that made it all the better, plus I had my supportive family by my side and messages from my favorite people constantly. Recovery after that was a bit of a bumpy road but nothing I couldn't overcome! Activation was highly anticipated as I waited three weeks to be activated!
My activation wasn’t all sunshine and rainbows at the start, but working hard with my speech therapist, my online community, audiologist, and my family, I slowly but surely began to see the sunshine. I’m currently (Spring 2024) at my 1 1/2 year mark and I couldn't be more blessed than I am in this season right now. The community I have created on my Instagram, the connections I’ve made, and the community I am in through For The Deaf Girl never would have happened if I didn’t go through what I did.
Where I Am Today.
Through this rollercoaster of a ride, I have learned so much about not only myself, but about the dDeaf community and how strong and powerful the connection of strangers on the internet can be. While my hearing through my CI alone is at about 85% understanding, I still have a ways to go till I reach the sweet spot of clear understanding, but looking back through all I have been through, I know there is nothing that I can’t overcome with the support of family, friends, the wonderful community I am blessed to be apart of, and by the grace of God. If there is anything you take away from my personal story I hope it can be this; No matter how high that hill is, or how low the valley may be, you still have a purpose and God has a plan for your life. It was hard for me to believe that for a while from all I have been through, but as I am writing a blog post for a community that I am so proud to be a part of, I see just how much God is using me to share my story to inspire and bring hope to other women and girls.
I hope you found my story encouraging, if you want to know more about my journey or connect, follow me on Instagram @living.life.with.a.purpose and don't forget to follow this amazing community of and for dDeaf women and girls just like me, @forthedeafgirl ! Let your light shine bright friend!
xo - Shelby :)
