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Family Inspiration

Oh, Corona

New ear on hold. Finding our new normal instead.

No surgery today.

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.

Categories
Cochlear Implant Hearing Loss Inspiration

Choosing cyborg

Yes, cyborg. A bionic human.

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.”

Rebecca Knill

“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 Knill
TED Talk, February 2020
How technology has changed what it’s like to be deaf

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.

Let’s shift some mindsets.

Categories
Family Hearing Loss

Hearing, a team effort

Mom, do you have your ears on?

I can do things you cannot, you can do things I cannot; together we can do great things.

Mother Teresa

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.

Categories
Cochlear Implant Family Hearing Loss

On bravery

You’re so brave.

You are braver than you believe, stronger than you seem, and smarter than you think.

AA Milne

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.

Categories
Cochlear Implant Family Hearing Loss Inspiration

My inspiration

My inspiration

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.

Categories
Cochlear Implant Inspiration

Why a blog?

So, why am I writing this blog?

A few reasons…

  • Because people have questions. After telling people about my cochlear implant plans, many have questions about the procedure and process of regaining hearing. These inquires are not only from friends and family, who look to learn more and support me, but from people with personal hearing loss or have a loved one who struggles. They are looking for a next step.
  • Because there’s not much out there. There are a few blogs and many resources shared by hospitals and cochlear implant manufactuers. But when I went in search of someone’s personal story, it was hard to find.
  • Because I have a story to share. When I was a senior in college, I documented my mom’s cochlear implant journey. It was during that same time that I started to lose my hearing. Now, as I begin my cochlear implant process, I find comfort and hope rereading that story. I think others will too.
  • Because storytelling is important. I’m a counselor + writer. For me, writing = processing = growing