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.
Technology has come so far so fast. The biggest obstacle I face, as a deaf person, is no longer a physical barrier. It’s the way that people respond to my deafness, the outdated way people respond to my deafness – pity, patronization, even anger – because that just cancels out the human connection that technology achieves.”
“You are going to be a cyborg!” was the response from a friend when I told him about my upcoming cochlear implant surgery. I had to Google the term. Wikipedia informed me: “A cyborg, short for ‘cybernetic organism’… a being with both organic and biomechatronic body parts.”
I typed back, “Oh man, this sounds intense.”
I can remember watching Star Trek growing up. While I wasn’t deeply dedicated, I recall the robot-people combo characters and their powers and abilities. Coincidentally, my dad shared Rebecca Knill’s TED Talk with me this past week. More cyborg references. There must be something to this.
Rebecca offers a simple description of cochlear implant technology and a profound explanation of what it offers a deaf person. Perfectly, she uses the cyborg analogy to describe what is complicated about bionic hearing – electrodes, power sources, computer chips, the technology that rebuilds a person’s sense of hearing. I watched this TED Talk, then watched it with my girls (twice), then encouraged family to watch it. Her message is not only about creating understanding of what it is like to be deaf with technology-enabled hearing, her message is about the importance of shifting our mindsets and connecting as humans.
This video is well worth your 14 minutes.
Rebecca talks about her decision to have CI surgery: “I just needed to stop that soul-sucking cycle of loss.” These words resonate with me in a deep and powerful way. I have felt this. My mom has talked about this too. Going from audiology appointment to audiology appointment, trying so hard to hear through the exams, only to find out you’re losing more and more – “soul-sucking.”
Cochlear implant technology offers hope from this cycle.
In 2004, Mom said…
I made the decision to get the cochlear implant; it was easy. As of that moment, I knew I could finally stop focusing on losing my hearing and start focusing on getting it back. The losing was over and the gaining began then. This felt like a huge burden lifted off my shoulders because I knew, at that time, that this was the worst my hearing would get and from that moment on it would only get better.
This past December, at Jefferson Hospital, I went for my final CI evaluation appointment – a series of tests with and without my hearing aids. Both nervous and excited, I was fairly certain of the outcome.
As predicted, I failed my last set of tests, allowing me to become a candidate for cochlear implants in both ears. It may have been the first time that failure felt like a success. A relief. The end of losing and the beginning of gaining. The audiologists delivered the news with joy. They too understand this emotional transition. In a flurry of words, they explained the next steps, the timing, the choices for CI accessories, it started to move quick. Quietly, I took in this moment. This was the start of a new journey.
When I met with my surgeon that morning, he asked if I was ready to book a date to be implanted (sounds like something a cyborg would book). For my crew, deciding on a date (for anything) requires a complex scheduling matrix, so it was not going to happen that day. But I told him I would. I told him that after hearing the team’s determination, I asked myself, ‘how would you feel, right now, if they said you weren’t a candidate?’ And I answered to myself that I would be sad. Instead, hearing that I was a candidate, I felt hopeful. This feeling assures me that I am making the right choice.
So onto cyborg living, or living my best cyborg life. I have a journey of learning and growth ahead. Rebecca, if you’re reading this, your talk feels serendipitous. Thank you for allowing me to post it here, for your work educating people about CI technology, and for putting human connection first.
You are braver than you believe, stronger than you seem, and smarter than you think.
I love describing my children as brave. “That was a brave choice.” Or “You were afraid but did it anyway – good job being brave.” But in all the thinking and reading I do about helping my kids be brave (the book, Growing Up Brave, is an excellent and empowering parenting resource), I don’t think of myself as very brave.
I think about my choices as logical, necessary – sometimes they’re fun, sometimes they’re hard. To me, my choices seem essential but not profound. Linear and not courageous. My daily choices aren’t usually that exciting. I have made some uncertain professional choices that have pushed me out of my comfort zone, the kind of choices that make your heart beat a little faster and worry build up in your stomach. But I have been fortunate that they have led me towards good people and work. “Jump and the universe will catch you.” One of my most dear colleagues always said this when it was time to make a decision or try something new. She has always been right.
So when I started to tell people that I made the decision to get a cochlear implant this March and they said things like, “You’re so brave!” and, “What a courageous choice!” it stopped me in my tracks. Could this decision be more than a next step? Don’t get me wrong, my stomach and heart tell me this is a serious matter. I’ve just always thought of a cochlear implant as my next choice. Albeit daunting, it’s necessary, linear, logical.
In 2004, I asked my mom about people’s reactions to her decision to have CI surgery. When rereading my Mom’s words, she focused on this exact same theme.
People remarked, “Wow, you’re looking into that surgery! You’re so brave!” It’s funny because I just can’t see myself as that brave; once I learned about cochlear implants, it just seemed like something I should do. I never considered the surgery an option or a heroic choice. This was my responsibility. I had to have this surgery, as a mother, a wife, and a person who wanted to communicate and be there for all the people in my life. It was my choice to have four children and this was my opportunity to still be the most a mother could be. What was my other option? Learning sign language at 40 years old? Giving up on the way I had always communicated and on my role as a mom? I know parents are wonderful hearing or deaf; I grew up with the love and support of a deaf father. But a mother is different in some ways. You want to talk with your mom and she’s responsible for hearing her children. I always knew if the opportunity arose to better my hearing, it was my job to seize it.
The parallel in our thinking gives me goosebumps. While I know this is not how everyone with profound hearing loss thinks about CI technology, my mom’s words capture my perspective.
I too crave all the hearing I can possibly acquire. My life is loud and messy with three small kids, a job, friends, the world around me and I want to hear every sound. I want to understand every sound. My hearing aids cannot create this clarity for me but a cochlear implant might. So for me, this is the next step in my pursuit of hearing. And I will credit myself with being brave; I am making a choice that makes me afraid, but doing it anyway.
Be around the light bringers, the magic makers, the world shifters, the game shakers. They challenge you, break you open, uplift and expand you. They don’t let you play small with your life. These heartbeats are your people. These people are YOUR tribe.
— Danielle Doby
Not one part of this journey would be possible without my people. They are my inspiration, my cheerleaders, and my champions. They are family, friends, colleagues, neighbors, mentors. Their words of encouragement and excitement weave through this narrative and I am grateful for their willingness to be a part of my story.
My Mom, Anne Marie, is by far my closest collaborator and brightest inspiration. As mentioned, this writing project began my senior year at Villanova University. My challenge was my honors senior thesis. When considering what I wanted to investigate and document, I knew I wanted to capture my Mom’s recent cochlear implant experience and her process of regaining hearing. With the support of my advisor and family, I wrote about each step in Mom’s cochlear implant process – the final stages of profound hearing loss, discovering CI technology, meeting her surgeon and audiology team, numerous evaluations, family interviews, being activated, relearning sounds, and her deep faith and sense of hope throughout. This story was fascinating, as the technology was so new and the impact so great.
Life doled out a major twist for me that year. Two months before completing my thesis, I experienced my first severe hearing drop and found myself face-to-face with audiograms, showing my own personal loss. How would this unexpected and uninvited challenge impact my project as intended? How could I write exclusively about my Mom, pretending that I was unaffected? Ultimately, I chose to weave my story into the narrative. These quick, sometimes underdeveloped excerpts capture the details of my first audiology appointments and my emotions and wonderings about the future. And now, I am so glad I made that choice.
Recently, I have found comfort in rereading my words and reflections. When I think back to 2004, I remember a college senior, somewhat shaken but with resolve to write and rewrite and find exactly the right words to describe Mom’s brave and bold choices. Mom was generous with what she shared and her wise words rise to the surface. Rereading now, I find myself highlighting passages, saving sentences to recall later. I captured them 16 years ago knowing I might need them one day and that day is here.
A few weeks ago, I sent this note to my immediate family, close friends, and trusted colleagues:
Before too much time passes, I wanted to share some news. Over the past few months, I have been pursuing a cochlear implant evaluation. Recent audiologist appointments made it clear that it was time to take this step. I have been working with the team at Jefferson Hospital and through Auntie Mary’s connections to Advanced Bionics – all have been informative, supportive, and caring. The CI technology is incredible and the Jefferson team, who embrace Advanced Bionics, lead the field. Right before Christmas, I found out I am a candidate for an implant because of my “clarity” (how clearly I can hear the speech of others around me in all types of situations). This past month has been a time for CT scans, blood work, brain MRIs, and general observation of and reflection on how challenging it is to hear in many situations, personal and professional.
So I set a date for surgery – March 19th! This will be an exciting journey – thrilling, a little daunting, and hopefully some humorous moments as we go. I look forward to sharing information, progress, and opportunities for you to support my process, as I learn and experience more.
The love and support that has followed helps affirm my decision to have a cochlear implant and work towards better hearing. I have found that positivity encourages me to share more about the process and what it is like to work and live each day with significant hearing challenges. It makes me feel a little lighter, more hopeful, more excited. The excitement I have witnessed in response to my decision is not unlike what Mom recounted when we wrote her story:
“Beyond the enthusiasm in our home, as more and more friends and family found out about my plans for a cochlear implant, the excitement started to build. Everyone I told seemed thrilled, I think because they sensed my enthusiasm.”
When I told my sister Shannon I was thinking of blogging through my cochlear implant experience and also looking back at some of the excerpts from my thesis, she responded, “you have to do that and I will contribute!” Thinking about this blog’s opening quote about surrounding yourself with people who “don’t let you play small with your life” I can see the impact of these people, my people. My Aunt Mary’s late night texts encouraging me to connect with Advanced Bionics. My sisters’ phone calls asking about my research, encouraging me to keep pursuing appointments. Tim leading the kids in a parade around the first floor of our house when I made the decision to schedule surgery. A best friend correcting me about not being able to hear something – “you can’t hear it NOW but not for long!” And Mom’s example of what it looks like to have the courage and faith to make this choice.
So here it goes. Surrounded by my “light bringers, magic makers, world shifters, game shakers,” I embark on this journey and project – to revisit the stories written, document my own experiences, and make meaning in the connections.