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.
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.
I can do things you cannot, you can do things I cannot; together we can do great things.
I was seven. It was a sunny Saturday around noon. Mikey, Erin and I were still in our pajamas, playing in the TV room with our babysitter. Dad and Mom went out early that morning. When they returned, Mom sat the three of us down on the blue loveseat and opened a gray jewelry case, revealing two confusing little devices. Messes of tubes and rather large beige earpieces made up her first pair of hearing aids. I am sure Mom explained to us what these would accomplish, but I do not remember understanding.
I wrote this in 2004 as a part of my Mom’s story. I’m glad I did. The memory is more faded now, though I still remember the way the light flooded the room that morning and sitting next to my brother and sister.
I’ve had hearing aids since before my kids were born, so they have only ever known “mom’s ears.” They know what’s possible when I’m wearing them and when I’m not. In the morning, they greet me with, “Mom, do you have your ears on?” and adjust their volume and gesturing accordingly. It makes me smile because it is EXACTLY what my siblings and I used to do with Mom.
This past summer, Reese (7) and Addie (then 5) started to ask more questions about my hearing aids and what I can and can’t hear. They started to notice when I would miss something. And then, without asking or planning, they started to accommodate for me. They started listening more intently in public and social situations and repeating words I missed. They would make sure I didn’t walk by someone who asked a question without responding. They started to help me hear.
Any time there was talking, laughing, screaming, warning, or crying, my brother, sisters, and I were Mom’s interpreters. We were always listening for her and a lot of children don’t listen for their parents; they don’t have to. Mom never asked us to listen but we always did. Teachers, friends, phone calls, horn honks, deliveries, teapots, doorbells, sirens, dogs barking, cashiers, anything.
Having grown up surrounded by deafness, I never thought twice about the normalcy of Mom or our life, until second grade, when a classmate questioned me: “How come you talk funny sometimes when you talk to your family? And how come your mom doesn’t say hi back when I say hi? Why doesn’t she like me?” It hit me. Mom was different and, as a family, there were things that we did differently.
Just this past Fall, I visited Reese’s second grade class to volunteer – an experience that took me out of my comfort zone. While I love school and young people, I knew walking in that there is no guarantee I would be able to hear and understand any of the other children. Children’s voices are challenging – they’re higher, faster, mumbly, unpredictable. And if I haven’t had prior practice hearing a voice, I’m unable to anticipate and layer on the context of knowing a person, her family, likes and dislikes, and what she usually talks about. Beyond my three, there are only a handful of other kids with whom I can talk easily. So a classroom full of new faces and voices – treacherous, anxiety inducing, a risky undertaking.
So I brought a secret weapon – Jimmy. I told Jimmy and Reese that they would have to help me. And they did! In the end, we were successful and exhausted. Weeks later, Reese said, “the kids in my class were asking what you wear behind your ears.” “What did you say?” “I told them you have hearing aids because it’s hard for you to hear.” “What did they think?” “That it’s different.”
I have found that kids seem accepting of difference now. While it’s not perfect by any means, we do a better job celebrating and educating around difference. Reese and Addie are in class with kids of all abilities, strengths, and challenges. From allergies to autism, our babies know what to call differences that were at best ignored or worst ridiculed when I was in elementary school. Having language to talk about things matters. Intentionally reinforcing inclusion and understanding matters. This gives me a lot of hope for the future.
Parenting is not easy. Parenting with hearing loss complicates simple things. Having my kids on my side makes the world more manageable; it makes us a team. For me, hearing is a team effort.
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.