The Seventeen Years I Won't Get Back

At age three, I was one of the youngest recipients of a cochlear implant.

After losing my hearing to meningitis as a baby, my parents relied on an audiologist, doctor, and medical device manufacturer to help their deaf daughter hear again. Back then, access to information was a challenge—caregivers and providers were the single source of truth in my patient experience.

This was 1986. Cochlear implants were new and there was no brochure for me. Even though my procedure and device were implanted as part of an FDA research protocol, there was also no way to instantly get questions answered.

In the years to follow, an audiologist would work with me, to skillfully “program” (map) my cochlear implant to my individual preferences and comfort. My parents and I developed trust in her, that she and we would get the most out of my cochlear implants. In my teen years, she retired (along with a trusted relationship). In finding a new audiologist, I now had to rebuild a style of communication, mode of information sharing, and rapport with someone completely new—to me and my devices.

The first map with this new audiologist was uncomfortable, but I was told to give it time to adjust. After obliging, I adapted to a new, uncomfortable, normal.

The  following year, I tried  a new audiologist, and the experience was similar. As was the one after that. And the one after that.

Between then and now—were 17 lost years.  

I only wore my processor when absolutely necessary.  Due to an ill-fitting program, sounds were too loud and overwhelming. When I was alone, I habitually turned it off. In fact, my default state became “off.”  

Growing up, I had teachers, clinicians and my parents to provide regular feedback on my hearing, asking me conversationally if I’d heard certain sounds like the rumble of thunder. (If I hadn’t, then that was a note to consider boosting my processor’s access to low frequency sounds.) But by my teens, my feedback loops were drying up.

Even today, the majority of support groups, conferences, and books exist to either help parents navigate this experience for their children, ensuring that their child is getting the most out of their processors; and, similarly for spouses and/or family members of senior adults, who seek to restore age-related hearing loss through cochlear implants. Even online ads and third-party digital information (the new “brochures”) are targeted to spouses and immediate family to help their loved ones regain their sense of independence.

Now that I’m “grown up,” living in another city, immersed in my career and community, I don’t have this same support network.

This great hearing gap in my life represented a larger gap in the market that still exists today; those of us in the 18-65 age bracket and the lack of feedback loops that help us measure our progress or decline.

There are now over 324,000 people, worldwide, who have been implanted with cochlear technology—it’s an incredible, life-changing advancement for so many of us. But there’s no such thing as passive maintenance when it comes to these devices. People like me need to regularly understand:

• Am I hearing the right stuff? What am I missing?
• Is my speech clear the way it should be?
• Is my hearing improving or declining?

Today, digital technology can help answer these questions.

For instance, now we can record our speech over time and analyze it through speech frequency programs and voice-activated systems like Alexa, Siri, or Cortana. I could “talk” to Alexa and she could listen (and detect) declines in speech over time, and provide me that feedback—delivered back both by sound and text.

As an example, I may incorrectly hear “sheep” for “cheap” a sign of missed or declining perception among high frequency sounds between /sh/ and /ch/. That’d be a quick indicator it’s time to see an audiologist. For those of us with cochlear implants—our hearing is subject to perception variability, just like most people’s vision, but we’re less likely to go in regularly for check-ups as adults. This is not ideal; annual appointments are critical.

The challenge is to take modern technologies that deliver a new type of feedback loop for both patients and caregivers: accessible apps so that testing isn’t limited to a hospital or doctor’s office, increased software and hardware integrations that process data in smarter ways, mechanisms to inform the manufacturer, and ultimately, a unified patient profile that complements a trusted patient-caregiver relationship and allows the manufacturers to ensure patients like me are truly benefitting from this life-change technology.

Last year, while conducting a meeting as Board Chair for the Alexander Graham Bell Association for the Deaf and Hard of Hearing, Dr. Jane Madell, a well-known audiologist boldly approached me:

“You’re a great speaker and presenter, but your speech isn’t where it needs to be. I can hear it in your tonality that you’re missing some hearing frequencies. You need to go in and see an audiologist for a check-up.”

All I could do was nod my head.

I was too self-conscious to speak back right away. I had spent 17 years in a default “off” state. Was this the result?

After a few “uh-huh’s,” I worked up the courage to confess that I hadn’t found anyone that I could trust, and that I’d lapsed out of the annual mappings. I’d been passed around and “lost in the system.” And regardless of the courage it took for me to respond—no one before had the courage to communicate that I could do better, as she did.

She recommended a New York audiologist, Dr. Megan Kuhlmey at Columbia University Medical Center.

Off to New York I went. In our first appointment, Dr. Kuhlmey plugged in my processor, analyzed its data, and announced that my average wear time was 7.5 hours per day. I was stunned. That’s not even a full working day!

She was surprised how in the dark I was about my processors. I knew very little about the technology that I wore: its features and capabilities. That really woke me up. I needed to be “on” more than I am “off.” After so many years, I owed that to myself.

We went through the tests: no statistically significant change or improvement since I last got tested, six years ago. I should be improving. Dr. Kuhlmey sensed my personal disappointment and she quickly reassured me that we’d get back on track, and began the process of “programming” my processors to be a closer match to my preferences and tolerance.

During  the “tune-up” portion of the appointment, I could tell she paid specific attention to my facial reactions. I asked her for a re-do of certain sounds. We turned my processor on and my reaction gave her exactly the information she needed, plugging me back in for more mapping adjustments until we got it “just right.”

When the programming was complete, Dr. Kuhlmey turned on my processor.

Then she began talking.

Immediately, I noticed a positive difference, and I enthusiastically told her, “Wait, this is different…really different.”

I had to pinch myself; it was too good to be true. She requested that I come back in three months for a check-in.

I exited the hospital, holding my breath. As the sliding doors opened up to the notoriously loud New York rush hour traffic, I braced for the onslaught of sound, promising myself I would resist the urge to “turn off.” The protected, quiet clinic setting surely was a baseline that I could handle, but now I was re-entering the real world.

The doors opened.

I scanned the street. I saw the usual cabs, cyclists, people—busy and full of energy.

And then I heard someone pass by me quietly say, “Good Evening!”

[To learn more about Catharine's story, join her for Design Week Portland and DrupalCon (in Seattle) this April.]