Category: Gains

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Cochlear Implant Gains Lip Reading Parenting

Back to school

It’s been a whirlwind! We’ve been back to school for over a month. It was the first time in a long time and the first time for all three to board the bus. And with back to school comes the excitement of meeting new teachers, administrators, parents, school friends, neighbors, and bus drivers. We needed to shop for school supplies and prepare our gear. With a year spent at home, we needed shoes, haircuts, and a basic reacquaintance with the world of school.

And all of these interactions and errands happened while masked. Masks set off anxiety; I wrote about masks and lip reading in the spring. And my Mom and I talked about this same social anxiety many years ago.

Then there are the people that you come in contact with who you have to communicate with—strangers, teachers, cashiers, waitresses, and doctors—extremely stressful undertakings with limited hearing. I wanted to function as a mother and do what I needed to do. But I either had to try and get through a conversation as best I could, usually missing details and information, or explain to people that I couldn’t hear. Some people would understand and I could tell that others would think of me as a pain in the neck. Some don’t even notice; they’re so focused on their words that it’s not until they get to a question that my hearing matters. When I had almost no hearing, I would tend to not want to deal with strangers because I didn’t want to have to explain everything.

So early fall was a test. What would these interactions feel like with my new technology?

In late August, we attended a welcome back reorientation event at our school. I was nervous—all masks, outside, essential information about the new protocols and programs. How would I navigate this? Would I be able to hold conversations with people I hadn’t seen in-person in almost 18 months?

The event began with a brief presentation from our beloved principal and a question-and-answer session to follow. In my limited interactions with other parents, I was keeping up, actually hearing speech through masks without lip reading. I kept thinking: I heard that! I got that! During the presentation, I could see folks straining to hear. The principal’s voice competed with the rumbles and thuds of construction happening on the playground. Astoundingly, I could hear most of the presentation.

Now what competed for my attention was the realization that I was actually hearing speech and information in a less than perfect acoustic setting. So many times before, in a setting like this, the disappointment and stress of not hearing would have distracted me. Alternatively, at this moment, I was overcome with the excitement that I could hear. And hear things out of context and unexpected, like that all students would receive free lunch this year. What?! No more packing lunch?! (This is a story for another time.)

Filled with an I-can-do-this energy, when the crowd dispersed, I decided to approach a few people and say hello (something I would have previously avoided). I found the principal first. He kindly remembered my surgery and asked how I was doing. I told him that today was one of the first times I had attended a school event and would walk away knowing the critical information: It’s one of the first times I’ve understood you! I found parent friends, and we chatted about teacher assignments, the upcoming soccer season, and of course the lunch news! Feeling accomplished, I decided we were going for an ice cream celebration.

There is no comparison to my previous school and social experiences, masked or unmasked. With my CI, I can understand speech exponentially better. While this is helpful, critical even to parenting school-aged kids, it’s the increase in confidence and agency that I value most.

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Cochlear Implant Family Gains

Voices, at first

In those first few weeks, Addie’s voice was perfect to me.

I couldn’t get enough of it. I’m not sure if I had never fully heard it or if it sounds very different now. It’s really hard to tease that apart. But in those first weeks, something about her sweet, crisp sounds just made my heart melt. That squeeze-her-cheeks-with-tears-in-your-eyes kinda melt. I told her she sounded like a cartoon mouse—the cutest Disney sidekick ever animated. I would ask her to keep talking and those first grade stories never sounded so good.

At first, I categorized voices into two groups—deep, mechanical bots or sweet, high-pitched chipmunks. When people spoke, their voice sounded like one of these two and, as we talked, my brain would differentiate and make sense of their voice. I pictured my brain like a scene from the movie Inside Out. (I’d like to think I have my own version of Joy.) As my CI interpreted a voice for the first time, my brain diligently retrieved core memories and replayed past voice recordings in real time. “She’s talking to Kevin now. Roll tape. He’s loud, lots of expression.” And as conversations progressed and multiple conversations occurred over time with a single speaker, each person would begin to sound less like a bot and more natural and familiar.

Sound also came through on a slight delay. The delay was longer at first and could make me a little crazy if I thought too hard about it. Being hyper aware of each of my ears hearing independently and differently at the same time took some getting used to. My Phonak hearing aid talks to my Marvel processor to coordinate and bring the sounds together. Now my brain must cue the sound engineer to create her best audio mix of my different channels of sound. Each day, the mix is closer and closer.

In a perfectly quiet setting, words were coming through clearly. Amazing. But if a truck drove by or the fridge made ice, my focus shifted to the background noise, drowning out the speech. I pictured my brain’s forewoman calling out, “we got a rumble!” and my CI tuning in to the background tone. Sometimes consequential (the truck behind me on my walk) and sometimes not (the ice).

In the beginning, more than one speaker would scramble together. And lots of talking plus background noise would make me feel like I was finding my way through a fun house. Not so fun. These moments would bring on what I refer to as the magnetic force field sound effect. With too many voices and too much sound, especially at the end of a long day, my brain would sound this alarm—I knew I had overdone it.

It wasn’t a “flip of the switch” and I could hear. Because of the distorted sound, it took a lot of work for me to understand anything. I couldn’t call this “the moment,” in retrospect, it was a step. At the time, it was the furthest thing from what I expected. I think if I had been deaf from the time I was born and had never heard sound, this may have qualified as the most exciting moment. But I had been a hearing individual, even until my surgery, and I was used to normal sound. This emphasizes the uniqueness of the process. I didn’t go in for an operation and come out hearing. I went in for an operation and six weeks later, I attached something to my head and started to relearn how to hear. I knew that eventually my brain could put the background noise in the back and concentrate on the foreground sounds. But this day proved to me I would really have to work through it.

Uniqueness of the process. Every CI recipient has their own story. The sounds in their world that come easily and those that require intense focus and practice. For me, speech came quick but voices took (and continue to take) practice.

During the first few months, I liked to practice by listening in on my kids from the kitchen. They’d be eating or playing a game in the dining room. With only my CI, I’d listen to their conversation. I could hear their speech, but not their distinct voices. All the words sounded like they were coming from the same high-pitched voice, but with listening (and context clues) I could start to tell them apart. While tiring, each practice with only my CI would bring more depth and distinction to each voice. And, for me, relearning to hear my kids’ voices has brought me the most joy.

Categories
Cochlear Implant Gains

Music

Memories and soundtracks

In college, we played a game called the song game. Four of my lifelong friends from Villanova lived in a large quad on the first floor of Simpson Hall and each of them had a computer and access to hundreds of songs—in 2000, Napster made it possible to download any song you wanted (not so legally) in seconds.

I was never very good at the game, but I really enjoyed it. One roommate would press play on a random song and everyone would try to be the first to call out the title and artist. The game could last 10 minutes or go on for an hour. Fierce competition would ensue. I never won, but I could often guess the song within a few seconds.

Key song game participants pictured here among Villanova friends at our wedding in 2009.

Fast forward ten years, the speakers in my car were up way too loud and new radio songs were impossible to understand without access to lyrics. If a new song came on the radio, I would switch the station. I played the same familiar music from our iPod over and over again. My brain knew all the lyrics and could round out the tune when certain sounds began to disappear. I could never have played the song game.

I really love music. I grew up dancing and around a family of piano players and singers. Dance grew increasingly hard for me until it became near impossible. Music went from being something I craved to something that annoyed me. It made me sad.

My cochlear implant has changed this for me. At activation, I wanted to test music streaming through my CI and companion Phonak Marvel hearing aid. This feature was one I was most excited to try. I read the testimonials of many CI users who said that Bluetooth streaming and AutoSence OS (the CI’s operating system) made music enjoyable for them again. So we configured my phone, opened Pandora, and gave it a try. Ed Sheeran’s Thinking Out Loud started to play. Only I could hear it. I could hear it!

It had been declining for twenty years. Ten years of nonsense, ten years without words. Five or so years without music, lyrics, sounds. Over the crackling speakers of my laptop, Ringo, Paul, John and George ceased the silence that afternoon. The Beatles, one of the last bands Mom ever fully enjoyed, became one of Mom’s first new sounds post cochlear implant.

From my grandparents’ porch you could hear the crickets. You could smell the freshly cut grass and dinner on the neighbors’ grills. The yellow forsythia bushes lining the yard looked up to the blue fading into pink sky. We had exhausted the Beatles CD. Erin pulled a second CD from a bag, Anne Murray’s Greatest Hits.

“Track 11!” Erin said, as I put the CD into my laptop. I pressed play. We waited. Mom’s face confirmed recognition. The country waltz filled the room. Mom started to hum to the tune, loosely corresponding with the music as it played. Dad helped with the words to the chorus. Then, the second time it played through, Mom hummed and sang what she recognized: “Could I have this dance for the rest of my life?” My parents’ wedding song.

All the way home, and the next day, and for many days and weeks and years after that afternoon on the porch, Mom listened to this song. That day, every note brought back a memory. And with every note now, a new memory attaches to it. The quality of Mom’s life has been restored back to the clarity of Anne Murray’s voice the day she danced with Dad at her wedding.

It’s been twenty years since those song games in Simpson Hall. I’m playing my own song game these days. Kate’s extraordinary playlist, if you will. It includes my favorite songs and the last songs I remember hearing, really hearing. These songs can ground my ears after lots of listening and noise. My brain doesn’t have to work very hard. I can hear each lyric, the nuances of the signer’s voice, the notes, the individual instruments that compose the song. I hear harmonies I had forgotten, replaying versions of Hallelujah to hear “the fourth, the fifth, the minor falls, the major lifts.” So gorgeous. The clarity astounds me. Takes my breath away.

I listen to new songs that my kids love, too. (Dance Monkey, really?) Oldies that make me think of summers on the Cape singing with my cousins. Songs that bring back memories of high school friends belting out tunes in the backyard. Songs that take me right back to sitting on my dorm floor with my roomies singing along, knowing all the lyrics.

For me, some of my happiest moments have a soundtrack.