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A Rebirth

Friday, July 19, 2024

My CI Story

When I was in my mid-40s (I am now 59), I began to lose my hearing. My internist noticed that I wasn't responding to her as I should be and strongly suggested I go see an ENT. Which I did, after a time. At that point in my life, when it came to all things medical, procrastination and I were on a first name basis. The ENT doctor noted some hearing loss and recommended that I see an audiologist, which I promptly ignored for several years. In looking back, this was probably the beginnings of my tinnitus as well, but at the time, I wasn't well versed in all things ears, and was firmly entrenched in denial, even though I had a pretty conclusive family history of hearing loss.  

Looking for answers

A few years later, as my hearing got worse, I could no longer ignore that it was affecting those around me, particularly at home. I made appointments with several different ENTs and audiologists, always searching for that elusive definitive answer as to what was wrong and how to fix it. In each case, I was told my ears were clear and my eardrums were not damaged. No one had any idea of why I might be losing my hearing. Since then, I have come to find out that roughly 78% of cochlear implant patients have unknown or genetic reasons for their hearing loss. Five years after the initial red flag was raised by my internist, I began to wear hearing aids. 

Over the next ten years, as my hearing continued to decrease, my home and work life became increasingly impacted by this loss. I saw upwards of six different audiologists or hearing aid professionals in search of better hearing aid technology. I held out hope that I might one day be able to hear not as I once did, but at least better than I currently was. At each clinic, I asked if I was a good candidate for a cochlear implant (something I was familiar with through books and television). The responses given were universally "something to think about in the future," and then I was sent on my way with my hearing aids professionally cleaned, and a metaphorical pat on the head.

I saw upwards of six different audiologists or hearing aid professionals in search of better hearing aid technology.

— Elizabeth Brinkama, who hears with AB cochlear implants

Being Heard

It wasn't until after a friend, also a hearing aid user, encouraged me to seek out yet another audiologist, that I found the one I had been searching for all along. With help from the internet, I actually found an audiologist who did tinnitus testing as well, something I had never known was available from my other audiologists. After a thorough morning of testing, but before I even broached the subject, this audiologist had the paperwork in hand for the next steps I should take to begin my cochlear implant journey. I finally felt heard.

From that life-changing appointment to today was a whirlwind five months. Now I feel a bit like Jaime Sommers in "The Bionic Woman.” I may not be faster, but I am definitely better and stronger. While I’m still in the early days of my CI journey, I felt the difference immediately. There is still much tweaking to do, homework for hearing training to attend to (podcasts are a perfect tool for this), and a level of patience (with myself and others) still to achieve, yet I have a strong sense of the new possibilities that are opening up to me.

Be Proactive and Persistent

At work, I have stopped relying on the talk-to-text app on my phone, instead being able to listen to what people are saying, and, if need be, asking them to repeat themselves. At home, I am streaming TV programs without captions. I do miss some words occasionally when there might be an accent, music in the background, or someone speaking quickly, but I hear enough words to understand the overall story line. In the car, I hear other cars around me, including emergency vehicles, whereas before it was entirely visual. On walks, I can now hear people coming up behind me, whether they’re jogging, or on their scooters or bicycles. Because of that, my sense of safety has increased immeasurably. I know that wearing hearing aids and cochlear implants is not like wearing glasses. My hearing will never be what it was. That said, I have been thrilled with what I have been able to comprehend with my cochlear implant in such a short span of time.

My sense of safety has increased immeasurably.

— Elizabeth Brinkama, who hears with AB cochlear implants

What I have learned on this journey and what my advice would be is that if you think something is not quite right, don't put off seeing your health care professional. If you feel like your doctor isn't listening, particularly for women, who are often still the most unheard, be proactive and find a new doctor. Keep on going to new doctors until you have one you feel comfortable with, and who you feel is being responsive to what you are saying. They work for you, not the other way around. The world that had been diminishing around me now is suddenly opening up once again.

Elizabeth Brinkama
Written by Elizabeth Brinkama

Elizabeth Brinkama

Born in 1965 and raised in Claremont, California, Elizabeth meandered eastward and graduated from The Colorado College with a BA in English Literature in 1987. Moving further east to Washington, DC, she spent the next 20 years working in the book trade, if you can call being surrounded by books work, before segueing into the gift trade as a buyer for a local, independent boutique, where she continues to this day.

 

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