I was sitting in my car in a strip mall parking lot, crying.
Twenty minutes earlier, I'd walked out of a small audiology office thinking I was just getting a routine baseline hearing test. You know, the responsible 40-year-old thing to do - add it to the list with the eye exam and dermatologist appointment. Instead, I heard ‘otosclerosis’ and ‘progressive hearing loss’ and ‘no cure.’ The audiologist's words kept replaying in mind… I was losing my hearing and there was nothing I could do to stop it.
That moment was the first step on a path that never thought I’ walk down. Now eight years later, I can tell you that a lifelong diagnosis like losing your hearing isn’t life sentence.
A Family Pattern
My first and only other unfavorable hearing test came during a school hearing test in elementary school. They said I had “mild nerve deafness" and nobody seemed particularly concerned. My dad heard the same thing when he was my age; so, It felt like a minor hereditary trait.
My mom now tells me she noticed I struggled with spelling sounds that were similar - B's and D's, S's and X's. She's convinced some of my spelling challenges were actually my inability to distinguish close sounds, though I'm also dyslexic, which complicated things. I was always encouraged to sit in the front of the class, probably at the school nurse's suggestion after that test result.
But honestly, I lived most of my life unaffected by what seemed like a minor thing. It wasn't until 40, many, many years later, that I started gaining awareness that I might not have the best hearing. Ironically, it wasn't my own self-awareness that led me to question whether I was hearing the way I was supposed to.
The Signs I Didn't Want to See
Looking back, the clues had been accumulating for several years. Small things that seemed like habits or preferences until other people started pointing them out.
I found myself using the volume amplifier on every phone call - at first thinking it was just clearer that way, but gradually realizing I was working harder to understand conversations without it. When people got in my car, they'd wince: "Whoa, that's loud." Same thing at home with the TV. The radio that had been perfectly fine was suddenly cranked to the high twenties and thirties.
At work and in social situations, I noticed I was asking people to repeat themselves more often. "Huh?" "I didn't catch that." "Can you say that again?" A few close friends started mentioning it: "Unless we're somewhere quiet, you ask me to repeat myself a lot."
The toughest situations I encountered were noisy environments like networking events, busy restaurants, and conference receptions. Places where I'd once thrived professionally became exhausting. I could handle small talk because I could predict the responses, but anything deeper required so much mental energy that I'd leave drained.
These weren't dramatic moments. They were tiny adaptations that felt normal until someone else's reaction made me realize they weren't normal for everyone else.
The Reality Check
That first audiologist's assessment turned out to be premature. She'd jumped to otosclerosis without enough information. When I got a second opinion at Mass Eye and Ear (at the time I was incredibly fortunate to live 40 minutes from this world-renowned institution), they took a completely different approach.
The team there provided what I call 360-degree hearing care: audiologists who could administer tests and read results, doctors who specialized in different types of hearing issues, and specialists who could support the medical device side if needed. They used my initial test and their own as baselines, told me to live my life normally for a year, and then retest to see what we were actually dealing with.
A year later, they diagnosed me with sensorineural hearing loss. Still progressive, but different from what I'd initially been told. This type can be hereditary and environmental. Some people experience an initial loss that then stabilizes. Others have gradual decline over time.
The recommendation was hearing aids for both ears. We chose Bluetooth-enabled hearing aids. I made the decision to over-purchased the hardware with the thinking that as technology improved, I could get firmware and software updates rather than replacing expensive devices frequently.
The First Day
I got my hearing aids just before New Year's. After the fitting and programming in a soundproof room at Mass Eye and Ear, I walked out into the world with amplified hearing for the first time.
The buzz of fluorescent lights hit me immediately. When the audiologist spoke, it was like surround sound. When I exited the hospital and entered the parking garage there were lot of sounds, many familiar, just louder. But there was this one sound that remained unfamiliar… "swish swish". When I got to my car and turned on the ignition the radio what so loud it nearly gave me a heartache. I'd been listening to the radio with the volume at 25 when I went into the hospital and now it was too loud at 7.
I drove to meet my mom and a few others for dinner, still hearing that periodic "swish swish" sound. It took me twenty-five minutes of driving to realize it was my own hair sweeping across my puffer vest as I checked traffic and changed lanes. I had stopped hearing these small sounds without even knowing I'd lost them.
Walking into a busy restaurant between Christmas and New Year's was probably not the best choice for road-testing new hearing aids. It was overwhelmingly loud. My hearing aids amplified everything equally - they weren't smart devices that could distinguish what I wanted to focus on and filter out background noise.
Learning to Live Amplified
The adjustment wasn't what I expected. Nobody told me that when you gradually lose hearing, your brain just stops processing certain sounds. So, when hearing aids suddenly bring everything back, it's physically and mentally exhausting. Your brain is working overtime to process all this input it hasn't dealt with in years.
I needed what I started calling ‘hearing breaks.’ Some days I'd get home from work and rip those things out of my ears immediately. Between the mental fatigue and just having something stuck in your ears all day, I needed the silence.
But the technology was impressive. With Bluetooth-enabled hearing aids I streamed phone calls. This was a complete game changer. When I got a call, the hearing aids stopped amplifying the sounds around me so the call was all I could hear, it was crystal clear. A complete game changer, especially for work calls. I got a TV streaming device so I could watch shows without blasting the volume for everyone else. And a directional Bluetooth receiver I could put in the middle of a table in a meeting or busy restaurant that would stream just the voices I wanted to hear.
The team at Mass Eye and Ear didn't just fit me with devices and send me home. They helped me figure out how to protect what hearing I had left. I was on planes constantly for work, so they taught me to use Flonase to relieve pressure and swap my hearing aids for noise-canceling headphones. It may seem counterintuitive, but these things helped protect my ears from engine noise. We also had to find a solution that would allow me to continue attending live music shows that were such a big part of my life. I was fitted for high-fidelity earplugs, which allowed me to enjoy the music without the potential damage.
I know these things may seem small, but they let me keep living the life I wanted. I learned that good healthcare doesn’t just manage your diagnosis. It helps you adapt without giving up the things make you, you.
When Masks Changed Everything
When the pandemic hit in 2020 I'd been wearing hearing aids for about 18 months. It wasn’t until everyone slapped on masks that I realized how much I relied on visual cues like watching people's mouths move and reading facial expressions to make up for what I couldn’t hear, even with my hearing aids.
I was at a grocery store one night and saw something that changed my perspective. A deaf shopper was trying to communicate with a cashier, asking her to pull down her mask so he could read her lips. The cashier refused because it wasn’t safe. The man couldn't understand her through the mask, and she clearly didn't know ASL.
I stepped in to help bridge the communication as best I could, and that night I decided I needed to learn American Sign Language. Even if it was just the basics (how to spell using the alphabet, say my name and handle simple phrases). If I could be a bridge to open communication for people, I wanted to try.
There were two reasons for studying ASL. The first was more personal. I thought it would give me an opportunity to connect with a community I might become more aligned with as my hearing potentially declines. The second was understanding that I could be part of creating more inclusion for people who navigate the world differently than I do. Even after a few I'm still very much a beginner, a student and nowhere near fluent in ASL.
A Community I Came to Understand
What I've discovered in learning ASL is that there's a whole spectrum of what it means to be part of the deaf and hard-of-hearing community. Some people embrace technology and devices. Others favor becoming fluent in ASL as both a language and a distinct culture. There are people who were born deaf, people who lost hearing later, and those who love someone in the community.
I am beyond grateful to the members of the community I've met. They showed me grace and patience and wisdom as I've stumbled through learning ASL and understanding their culture. I can only hope I've represented my journey and the community with respect.
The Numbers Don't Lie
My hearing loss has stabilized, and I feel tremendously grateful for that. This journey has taught me that there's so much we don't understand about living with hearing loss in a hearing world. According to the CDC, about 15% of American adults report some trouble hearing. That's roughly 37.5 million people. Yet how often do we see this represented in our daily world?
When I traveled to London, I was struck by something simple but profound. The nightly news had an ASL interpreter right there on the corner of the screen, not in a separate box off to the side, just naturally integrated into the broadcast. My fully hearing friend didn't even notice it was there because her brain filtered out what wasn't relevant to her. But for me, seeing that level of automatic inclusion was remarkable.
We have great ASL interpreters for major events like the Super Bowl, but you have to find a special internet stream to access them. Why isn't it offered side by side with regular coverage? These are the kinds of simple changes that could make such a difference.
The barriers aren't just about technology. There's still significant discrimination that the deaf and hard-of-hearing community faces daily. There's a large portion of the population who could benefit from hearing support but don't get it. Either because they don't know to get tested, or they know they'd benefit from intervention but can't afford it since it's not well covered by insurance.
The statistics are sobering but important. Nearly 48 million Americans have some degree of hearing loss, but only about 20% of people who could benefit from hearing aids actually use them. Cost is a major hurdle for most people. Did you know some hearing aids come with a price tag of $7,000 per ear and no insurance coverage? There promising advancements with hearing device costs being reduced and becoming more accessible each year.
There’s no better way to celebrate National Deaf Awareness Month this September than getting screened. Start with your primary care physician or contact an audiologist directly. The National Association of the Deaf and National Deaf Center have resources about deaf awareness, culture, and finding support in your area that you might not know existed.
Learning to Live Forward
My hearing loss journey isn't unique. As women in midlife, many of us will face a life-altering diagnosis at some point – diabetes, arthritis, depression, autoimmune conditions, or countless other realities that reshape how we move through the world. There's a common thread to these experiences. The shock of the diagnosis, the grief for what you thought your life would look like, and the gradual discovery that adaptation doesn't mean settling for less.
Here's what learning to live with progressive hearing loss taught me that really applies to any diagnosis that changes your life’s trajectory:
Trust your instincts and get answers. If something feels different about your body or health, don't spend months spinning out. Get tested. Get clarity. There's no shame in seeking answers.
Not all medical providers are created equal. If the first opinion you get feels rushed, dismissive, or hopeless, get a second one. Find practitioners who see you as the whole person you are, not just as a statistic.
Ask about your full range of options. Treatment isn't just about managing symptoms. It's about maintaining your quality of life. Consider what tools, accommodations, or lifestyle changes could help you thrive, not just survive?
Expect an adjustment period and be patient with yourself. Your body and brain need time to adapt to your new reality. Mental fatigue, frustration, and grief are normal parts of the process.
Your experience can become your superpower. Once you've navigated your diagnosis, you understand things about resilience and adaptation that others don't. Use your knowledge to help other women.
I understand being scared and convinced a diagnosis means the end of something important. But it's not an ending. You'll grieve what you thought your life would look like. You'll say goodbye to parts of your story you thought you had figured out. And then you'll build something new.
Sometimes the thing that feels like it's taking something away from you ends up teaching you what you never knew you needed to learn.
