March 2020 – In pursuit of hearing

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.

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.