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.
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.
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.
“Rather than gold-plating grit and trying to make failure fashionable, we’d be better off learning how to recognize the beauty in truth and tenacity.”
Brene Brown, Rising Strong
There is nothing fashionable about spitting stitches. Yes, this is actually something that can happen after any surgery. My body “spit out” the sutures behind my ear rather than let them dissolve. This has been painful, relentless, and just gross. It keeps the incision from fully healing and, at times, has looked like a dreaded infection.
To say this has caused anxiety is an understatement. When it first happened, my worst-case scenario thoughts let my mind run wild. However, a few weeks after surgery, consultations with both my surgeon and a family friend helped explain this phenomenon and ease my worries slightly. This unexpected event seems to have slowed. However, because of it, I had to creatively modify my external CI technology.
With the help of my audiologist and using a processor clip, I’ve configured a way to wear my processor in my hair. I have clipped it on my left side, wound the cord around my bun, and then connected the magnetic head piece on my right. The longer cord was intended to clip to my shirt, but I found this constricted my movement. In this configuration, the microphone is on my headpiece. Not perfect, but it’s working. Perhaps even fashionable? I refer to this style as my electronic hair accessory look.
Despite Mom having CI surgery twice, the recovery has surprised me. There was much pre-surgery chatter about how different the surgery is now verses 20 and 12 years ago, significantly downplaying the recovery to a small incision and moderate headache. While I hope this is true for most, it was not my experience.
Looking back at Mom’s story, it was not her reality either, though in our 104 pages of writing, we devoted only five sentences to surgery recovery.
As the medicine wore off, the pain increased. I felt dizzy, progressively more nauseas, and sudden movement strained my stitches. My jaw hurt and I heard an uncontrollable and inexplicable roaring in my ears. The worst part—I was lonely. I missed my children and Mike, who were back in Connecticut, awaiting my homecoming.
It’s brief; however, it’s remarkable how these sentences capture much of my experience as well. (More on dizziness and roaring sound soon.) Just as Mom missed us, I missed my crew too. Though I think they would tell you it was one of the best weeks of their lives.
Between trips to both grandparents’ homes and nonstop fun with Auntie B and Uncle Jonny, my support system kept the kids busy and their minds off their my healing. Auntie B even celebrated her birthday with us and stood in for me at the first grade mother’s day tea while wearing a hot pink scrunchie of Addie’s choice. Highly fashionable!
I am endlessly grateful for their support throughout my healing.
Hi there. I’m still here. It’s been an arduous yet exceptional couple of months.
When I started this blog, I believed it would be a way to write about change and showcase positive, exciting gains of cochlear implant hearing. And it would bring awareness to hearing loss and deafness, and to what’s possible and what’s different. I thought I would write thoughtful stories about generations of people grappling with hearing challenges and ultimately triumphing and that these would inspire. And while I still think that’s true, in optimistic fashion, I didn’t consider what I would do with setbacks.
After the initial high of activation, the past three months have been unexpectedly hard. And it has taken me some time to figure out how to write about it. I have found myself waiting for the challenges to resolve themselves in positive endings before I want to write the story. A story that would go like: it WAS hard but NOW I’m here.
As I often do, I looked for something to read and inform my mindset. I picked up Brené Brown’s Rising Strong and read about “gold-plating grit.” In her introduction, she talks about this tendency:
“…rarely do we see wounds that are in the process of healing….We much prefer stories about falling and rising to be inspirational and sanitized…. We like stories to move quickly through the dark so we can get to the sweeping redemptive ending.”
In my drafts folder are quite a few posts just waiting for happy endings. They’re standing in the way of other posts that share incremental gains and observations of my new hearing with a CI. Reflections on my kids’ voices and memories of music, Bluetooth therapy and thrillingly easy conversations at outdoor concerts.
So as the title of my blog reminds me, I’m in pursuit. Let’s get back to posting and here’s to unresolved setbacks and the gritty parts of the story that I’d rather breeze past.
I’ve been writing this post over the past several days. While it’s hard to fully capture activation in words, I hope this will give you some insight into my experience.
Leading up to Friday, I reread my and my Mom’s reflections on her activation experience from 2001.
Everyone was in the room, all the kids, Mike, Molly the dog, Lori, Sarah; it was a party! When Sarah showed me the earpiece, I was a little disappointed. Having dark hair, I didn’t want a beige one; it would show too much. Sarah quickly decided we would reorder the darker model to blend with my hair. Sarah explained the entire process to the kids as she went through it. I couldn’t hear her words, but I could tell how focused they were on her. As usual, they asked lots of questions. Sarah tried her best to answer everything. Amazingly, they hooked up my device directly to the computer. We started slowly testing the processor and set a program by listening to the sound of faint beeps. Excited to hear them, I let the room know. The kids gave me thumbs up. It took awhile to go through the series and set the levels for the soft and loud thresholds for each electrode. The computer was measuring how much electrical stimulation I could take. Everyone waited patiently and I could tell they were still asking questions of Sarah and Lori. I’ve heard all the analogies; it will be like going from analog to digital—that’s Mike’s favorite. It’s as if you ‘re hearing FM radio waves instead of sound wave—the social worker shared that one with us. How about electoral impulses instead of sound waves? My brain would need to translate this new sound into meaningful words, sentences, stories, and emotions. There was nothing anybody could do to make it happen faster. My brain had to do the hard work. And the nerves would come back to life, so to speak. Cochlear implant technology is the first to restore a sense, and I knew I was in for a lot of relearning before this would be the case.
This past Friday, only Tim and I could attend. We preferred this given my medical clearance appointment where I would have my stitches removed was one hour before (and there was no need for additional participants there). Truly, before I even washed my hair post-surgery, it was time to activate my new technology.
Dr. Paula, my audiologist, called us back to her office, where we also met a representative from Advanced Bionics. Together, they began the process of activating the CI technology. Similarly to Mom, first we became familiar with the external processor, batteries, and headpiece and then we started the process of testing each of the 16 electrodes and setting their thresholds for the sound. I listened to a series of beeps as each electrode came to life. Then I let them know when I could hear the beep (soft) and when it was uncomfortable (loud). The beeps sounded more like instruments—low drums for some and higher woodwinds for others. As this was happening, I thought, “these are my new sounds, my new personal orchestra.” In technological harmony, these sixteen electrodes will learn to send signals direct to my auditory nerve, recreating every sound in my world for my brain. Amazing.
The moment of truth. Sarah turned on my processor for me to try and hear the room, and so she could test and set the software strategies. Sarah set the processor on the first program and no one knew what to say. I think for the first time over the entire process, my family was speechless. “Say something!” I’m not sure who talked first but it all sounded like Disney World. Everyone had a high silly voice. I couldn’t keep from laughing. The kids sounded like Wizard of OZ munchkins. Mike’s voice sounds like Goofy from Saturday morning cartoons. I asked Sarah if she could program his voice to sound more like Tom Cruise. The second program allowed the voices to come through more normal sounding. Still, I couldn’t here any words yet, it all sounded like my father-in-law’s piano music, notes ascending and descending the scales, instead of talk. Sarah assured me that this would eventually change and the musicality would turn to words. With both strategies in hand, our task was to go home and try them for a day. We would be back the next morning for my first “tune up.”
All participants in my activation session wore masks. At the beginning of the appointment, this was extremely challenging for me. During the electrode testing, I could hear none of the conversation or explanation. I relied on lip reading through clear masks and a transcription app on my phone for those who wore a solid panel mask. By the end of the electrode testing, we declared that my lip reading was stronger than the transcription app.
Solid panel masks proved to be the perfect tool for the next step of activation. Dr. Paula said, “are you ready to practice?” I was. She started to count behind her mask, “one, two, three, four, five, six.” And I heard her. Not just sounds. I heard a robotic voice saying numbers. Unreal. I looked at Tim. He said, “you can hear the words?!” And I heard him, through his mask.
Everyone sounded like the same menacing villain robot from a movie. At first, there was no difference between the female and male voices. As I started to describe this to the group, I could hear my own voice. I sounded like a robotic Kate but on delay by about .25 of a second. They tested me with all kinds of words and phrases. And I heard parts of them one after the other. The room was a mix of excitement, relief, wonder, joy. A few tissues needed. Many laughs and smiles. Like Mom had said, it felt like the end of loss, the beginning of gains.
There was so much to test and learn. Synching my compatible hearing aid. Configuring magnets and cords. Understanding the chargers and battery back-up. Connecting with Bluetooth to my phone. The more I listened, the more my brain differentiated each person’s voice. Dr. Paula was sounding more like a robot version of herself as she showed me how I to move through the progressive programs on my own over the next month. “Programming has come so far,” she explained. Mom had to go back the next day; I will head back to Jefferson on June 3rd.
I felt nervous opening the door to leave. I had only tested my new hearing in an acoustically perfect office with my team of cheerleaders. What would the world sound like? We said our goodbyes and made our way. Past the waiting room—voices! Into the elevator—conversations! Past the front desk attendant—he’s listening to music! Through the revolving door and onto Chestnut Street, Philadelphia.
(from a note I wrote to Mom’s surgeon after her activation)
All we wanted was for Mom to be happy. And she wasn’t happy. It made her sad to know she couldn’t talk to me on the phone while I was away at college. It made her sad to miss the guitar music my brother played. It made her sad to not hear the music that accompanied my sisters’ dancing. She felt out of place in a house full of noise, phone calls, comings and goings, questions, concerns, laughter, and tears. We just wanted her to be happy and feel like a full participant in our day-to-day lives. With your help, this wish has come true. Mom has never lived better. Not only has her hearing been restored but the quality of her life has improved. Mom has gained confidence and independence. Like in the Wizard of OZ, in the past year her life went from black and white to Technicolor. Thank you for adding the color.
Let’s call this one of my “Dorothy moments”. When I entered Jefferson that beautiful, sunny Friday morning, my Philadelphia was quiet, narrow. But not unusually so; this was my gray prairie. When I stepped onto the sidewalk that afternoon, Philadelphia was alive, in full technicolor. Cars passed by playing music. Trucks backed up beeping warnings. Groups of college students walked together, chatting. A man was on his cell phone at the intersection; he wasn’t talking to me but I could almost hear his words. I could practically hear the two ladies who sat one table over on the sidewalk. The city felt louder, brighter, lighter.
We pulled up to the house and Mom, Addie, and Reese ran out to greet us. “Hi Mommy!” in clear, high pitched, almost cartoon-like voices (the next generation of munchkins). And a big hug from Mom. We sat on the porch and shared all the details of our days, my stories from activation mixed with vignettes of the girls’ virtual field trips. Their adorable, robotic voices made me smile. And, while far from perfect, I enjoyed the clarity and sharpness of their voices. So different from when I left that morning.
Friday was a major milestone in my journey. There’s so much more to come—I’m only on progressive program #1! Looking forward to making gains and sharing more stories of color and light as I go.
We stayed up late, ate our favorite meals, played games, created chalk art, took extra long walks, and went out for ice cream three times. We celebrated Grampy’s birthday with a custom Addie PowerPoint. I drank wine with my friend in my “ch’ears” glass, mailed to me by my cousin and aunt. I ordered soft pajamas and fancy ice packs. We let the kids stay up past bedtime for Villanova’s “Food Truck Friday” and dance to the band with their pals. I heard from friends and family near and far. I filled prescriptions. I packed. I made lists. I laughed with my family on video chat about what to wear to surgery. I read all the well wishes, emails, prayers, and cards one more time. I waited.
And here we go. Tomorrow feels like a change your life kinda day.
Over the past year, a new normal has taken shape. Wake up (later than usual), breakfast and coffee (more than usual), ready ourselves (dressed more casual than usual) for a day of online learning, working, and staying home. At the long desk in front of our living room window, which I now believe was a touch clairvoyant design, we start our days sitting in a row. And we make our way through the complexity of remote preschool, first grade, third grade, and work.
That this is challenging is not a revelation to anyone. Over the past year, I’ve read many blogs written by parents on the verge of a break, trying to keep up with school, work, and mental health. We do what we can each day to limit our tears and maximize our laughs. Some days we’re triumphant, other days not so much.
But these remote students are also mastering an unpredicted skill – lip reading! Who knew a pandemic would be the catalyst for this learning. Something I’ve spent my entire life perfecting but never thought as much about as I have this past year.
My dependence on lip reading became evident to all of us when the world put on masks and covered their faces. Gone was all the visual data I rely on to hear. Cue frustration and anxiety. I am a full believer in masks and the protection they provide; I just wish I could hear through them. We tried the clear plastic ones but found them to be foggy and sticky. My masked interactions with the world are stressful and sometimes futile. Panic at the dentist, confusion at the post office, a clueless nod to a neighbor – did I just agree to something?!
We spent much of the summer talking about how I need to see someone to understand what they’re saying. This fascinates the girls. In addition to being my helpers in a world of masked speakers, they also started practicing their lip reading and speaking with no sound. “What am I saying, Mom?” and then a silent, over-emphasized word or two. I can get almost anything (I often say lipreading is my superpower). So now this is Reese and Addie’s go to way to ask if they can stay up later than Jimmy to watch an extra episode on Disney+.
All this lip reading practice reminds me of my Mom’s stories about lip reading groups growing up.
Mom was about twelve or thirteen when Pepi (my grandfather) started hosting a lip reading group in their dining room every Thursday evening. The group enjoyed convening at their house because Mimi (my grandmother) would make coffee and tea and serve desserts from the Crowne Bakery. There were twelve people in the group, plus a leader, and some participants remain vivid in Mom’s memory. … the group leader, Mrs. S, was the tallest woman in the world. She always sat at the head of the dining room table. Then there was Mr. R, the only other man in the group besides Pepi. He lived at the YMCA, or so they believed. Pepi would pick him up at the “Y” and bring him over early so he could have dinner with the family. There would always be funny business at the dinner table on nights when Mr. R was there. Inevitably someone would find themselves in trouble and with no dessert.
The “lip readers” were wonderfully polite. Mom remembers it being fun when they would come to the house, and yet a little strange to understand. After all, it was a lip reading group, not your average gathering, so there wasn’t much noise coming from the dining room. They would read off papers, mouthing the words to each other to practice. Pepi was great at this, one of the best in the group. Mom and her siblings would try to spy on them, but they never understood what was being said. Mom remembers that suddenly without warning laughter would erupt from the room. It was like a canned laughter, coming out of a silence that would send the young secret spectators into hysterics.
I suppose we have our own little lip reading group going here. A new skill for a new time. Someday, they too will be able to “see” what a coach is screaming to her players on TV or their teachers are talking about in the hallway away from their students. Until then, I will grant the extra episodes, especially when they are successful asking with no sound at all.
Jefferson Hospital rightly postponed all elective surgeries given the Coronavirus pandemic. My surgery was cancelled for today and will be rescheduled once the doctors and staff can come up for air and feel we are on the other side of this crisis.
Honestly, I feel a sense of relief. I was nervous to have the CI procedure during this time of extreme uncertainty. My mind was playing “what if” scenarios on repeat. Additionally, given the impact of the virus on daily life, adding major surgery to our self quarantined homeschool just seems a bit much.
So we’ll wait, adjust to our new normal, and I’ll keep reflecting on what is to come. Just yesterday, I shared this blog with Reese. Now she wants to write a blog about what it’s like to learn from home. Perhaps she’ll guest post here in the coming weeks.
I went searching through my writing for a little inspiration during this time of uncertainty. Here is what Mom said in 2004, under different circumstances but fitting wisdom for the current time.
Well, Kate, I think there are optimistic people and hopeful people in this world. Optimistic people believe that the best will come out of a situation, but hopeful people look at whatever they have to deal with, good or bad, and know they will survive. I think it’s not enough to be optimistic but you must be hopeful. My hearing loss is totally out of my hands; it’s not something I can stop or change. I have to hope for strength and hope that something good will come out of, not my hearing loss, but out of me. You need to make good out of whatever you are given and do something great with your life. You could always be affected by something worse. God only gives you what you can handle and it makes you stronger and who you are.
My heart goes out to those on the front lines – healthcare workers, first responders, and those in public service, including my brothers-in-law in NYC and PA. I am in awe of teachers, who are transforming their lessons and extending themselves virtually to their students. I worry for families who depend on school to feed their children breakfast and lunch and keep them safe during the work day.
The change to my plans is minimal compared to what others are now facing. We will stay hopeful and prayerful for all those who are sick, for those in great need, and for those working so hard to keep us healthy.
More to come. Wash your hands. Keep your social distance. Stay safe.