Memoirs of a Cyborg

If you’re reading this blog, then you probably know I’ve been hard of hearing for most of my life. I found out when I was around 9 years old, because I flunked one of those basic hearing tests at the elementary school. I went to see an audiologist, and he told me my right ear was my “bad” ear, so I should start using the phone on my left. That was it, for a while.

A few years later, I tried hearing aids. My hearing was getting worse, so I got some that hid inside my ear (I got made fun of enough as it was), and they probably helped. But I hated the way things sounded, like I was hearing the whole world played through those speakers at the drive-through.

I flirted with the idea of hearing aids off and on as I grew up, went on a mission, slogged through college, got married, had children, attended law school…my hearing got worse and worse, and I encountered more and more challenging situations.

I was at a concert when the violinist suddenly stopped playing. I looked around, and nobody else seemed to have noticed. Then the song came down from the high register, and I could hear it again. I realized my hearing was now bad enough that I couldn’t hear high sounds at all. I would hear the scratch of the bow on the violin, but not the note. I’d hear the rush of air over the flute, but not the pitch. On one scary occasion, I discovered I couldn’t hear the fire alarm at the law school library. When I walked right by the alarm, I felt the pain of the pressure on my eardrum, but as loud as it was, I couldn’t hear it at all.

I finally went to see a specialist audiologist at the University of Virginia hospital, and they put me through a whole battery of tests. On the one hand, the audiologist and staff were impressed that I functioned as well as I did, but on the other hand, my scores were so low that it was clear to them that hearing aids wouldn’t help much. As I like to put it, wearing hearing aids at that point would have been like turning up a badly tuned radio. And for the highest pitches, there wasn’t anything hearing aids could do.

The audiologist recommended that I get a cochlear implant. It would have been a drastic and dramatic change, requiring me to take time out of law school for the operation and rehabilitation. But not only was it bad timing, I failed the qualifying tests for the cochlear implant. The problem was that my actual hearing was too poor for hearing aids to help me, but my functional hearing was too good for me to qualify for the implants.

So I soldiered on. I graduated from law school and got my first job. After a little over a year, I read an article on the internet about the new Hybrid Cochlear Implant. I’d heard of it, but it was recently approved in the U.S. The beauty of the hybrid is that it combines two kinds of hearing: digital hearing and natural acoustic hearing. A traditional cochlear implant replaces all of the hearing in one ear with electronic impulses that the brain learns to interpret as sound. The hybrid replaces only the highest frequencies with electronic impulses, but leaves the natural hearing alone in the lower frequencies. Obviously, that only works for those who (like me) have terrible high frequencies but still have good lows.

Perhaps most importantly for me, the hybrid cochlear implant would mean that I could still appreciate music. Traditional implant recipients are pleased that they can understand some of the lyrics on the radio, but they largely agree that the implant fails to capture the nuance of sound to replicate music. Pitch differentiation is imprecise, and it’s nearly impossible to tell the difference between, say, a trumpet and a violin. But with a hybrid, I’d be able to continue hearing the majority of musical sound with my natural ear, replacing only what I’d already lost.

I saw an audiologist and otolaryngologist at an office in Provo, Utah. They tested my hearing and confirmed that I’d be a good candidate for a hybrid cochlear implant. I asked a lot of questions. We had to jump through a few hoops for insurance, and I made arrangements with my very understanding employer. Then it was time for surgery.

Our lovely cake from Aunt Alice and Uncle Mark the night before Joe went into surgery. Fitting isn't it?

As much research as I’d done, and as confident as my doctor was, going into surgery was terrifying. There were some very real risks. Every surgery involving general anesthesia carries some substantial risks all by itself. But then there was a very good chance that I’d lose quite a bit of what hearing I still had left in that ear. My surgeon had to go in between two sensitive nerves. If he nicked one, I’d lose control of the muscles for half of my face. If he nicked the other, I’d lose my sense of taste. But I had the support of my family. My father-in-law gave me a blessing. I went forward.

Here we go! 

Off he goes. I had to kill time for almost 4 hours before 

I don’t remember a lot from when I first woke from surgery. Apparently it took them a while to put me under, but then I had a heck of a dose to sleep off. I kept asking Emily how the surgery went, and she kept having to tell me it went fine. I found out later that I had this conversation with my surgeon:

“JOE. Can you hear me?”

“Yeah.”

“Everything went GREAT. You’re gonna heal up just fine.”

“Kay.”

“You’re not going to remember this conversation.”

“Yes, I will…”

I do not remember that conversation.

Here’s what they did to me. The surgeon made just one incision, along the back of my ear by the base. They made a sort of pocket between my skull and scalp up behind my ear, to make room for the implant. The implant itself is round and flat, composed of a magnet and some computer-y stuff all encased in silicone my body won’t reject. Two “tails” come off of the disc. One is an anchor, which the surgeon placed by my brain. The other is the all-important electrode array. This was inserted into my cochlea, which is the spiral-shaped structure in the inner ear that looks like a seashell. The surgeon ran the electrode into my cochlea like a plumber running a snake through a pipe. But he took several minutes just inserting that part, as slowly as humanly possible, so as to expose my inner ear to minimum trauma. Then he closed up.

post surgery

I could hardly hear anything in that ear. I could definitely feel that there some something in my ear, like when you’ve been swimming or you’ve changed elevation and can’t unplug your ear. The sensation (and underwater-like sound) came from the buildup of fluid from the surgery. The result was slowly mounting claustrophobia. It’s a strange part of the process. A deaf person loses more hearing for a few weeks before the implant is activated and things finally begin to improve.

Oh, and I had to wear a “bra” on my head to protect the ear. Well, honestly, I was a complete wuss about it. I wore the bra longer than I had to.

On activation day, my audiologist just plugged my sound processor into his computer, calibrated, and stuck the magnet on my head. I’ve seen videos of miraculous activations, where people hear a loved one’s voice for the first time. That wasn’t me. But I did hear some pitches that I hadn’t heard in a very long time.

For the first three weeks, I gradually worked my way up in volume. You know that feeling when you’ve been in a dark basement for a few hours and then you step outside and the sunlight is way too bright? Imagine you’d been in the basement for nineteen years. It’s like that, but with sound. I had to start quiet and work my way up until I could tolerate a normal level of sound in the high frequencies I wasn’t used to.

recovery consisted of a lot of snuggles, movies, and treats. 

While I did have some facetime with an aural pathologist and, of course, my audiologist, my primary form of therapy was audiobooks. I listened exclusively on my implanted ear, using the Bluetooth device I got with the processor. That’s what taught me to understand speech again.

My other two challenges throughout my recovery were identification and filtering. I had to identify a host of new sounds in my environment, as well as speech sounds. This isn’t just because I hadn’t heard these sounds in so long, but also because the implant can only approximate the sounds through straight tones. At first it sounded like R2-D2, rather than real sounds.

The second challenge was filtering. If you have normal hearing, you are only processing around 20% of the sounds you hear. Your brain just automatically filters out what it recognizes as unimportant. At this stage, my brain didn’t know what was important, so I had to manually process everything.

Eventually we discovered that my surgeon had accomplished the rare feat of retaining all of my residual hearing. I didn’t lose any of the hearing I had before surgery. The only change was what I’d gained.

I had a couple of interesting experiences. Water was really loud. When I’d go to the bathroom, it was like 10,000 tiny bells ringing right next to my ear. There was a sort of static-y sound that I’d get walking around our basement apartment. I tried changing settings on my processor, but it didn’t go away. Finally I realized it was a real sound: the dog’s nails clicking on the wood floor. I developed a habit of making quiet “S” sounds to myself. It made a sharp, clear tone in the implant that told me it was working, and how loud. This was the first new consonant sound I learned to recognize through the implant.

One evening, I was resting on the couch in our living room, fiddling with my processor. “Emily,” I called. She was used to answering stupid questions at this point. “Yes?” “I think there’s something wrong with my implant. It might be the battery.” “Why do you say that?” “There’s like this rhythmic clicking. Do you hear that?” I moved my hand along with the steady rhythm. “It’s driving me nuts.” Emily laughed. “Joe, there’s a clock on the shelf behind you.” I was aghast. “You can hear that all the time?” That just goes to show how powerful our natural filters are.

In another especially poignant moment, I called Emily out to the porch of my parents’ farmhouse in New York, where we were spending Christmas. “Do you hear birds singing?” “…Yep. That’s birds. There’s a few over in that tree.” I just grinned. I hadn’t heard birds for years.

I made some other milestones as I grew more comfortable with the implant. I took a road trip with my family and held a whole conversation from the driver’s seat without angling the rear-view mirror to watch Emily’s mouth while she talked. I ordered fast food from a drive-through without asking the employee to repeat anything. My son whispered to me as I was leaving his room at night, and I turned back around to answer his request with another goodnight kiss. I had a conversation with my wife from another room.

When my baby girl was born, I heard her cry. I heard every little coo.

Recently, I attended a concert of string quartets. I was emotionally moved by the full sound of the blended instruments. It’s not just that I could hear the high notes, though I could. Even the cello’s sound fills a swath of the audible spectrum. Before the implant, I could only hear the bottom half to two-thirds of the sound. But there’s a crispness, a cresting, soaring purity that sings from the strings, and that’s all in the upper register. I heard and appreciated that for the first time last week.

I had to admit to myself in law school that I’d never make my living in the courtroom, with my handicap. But last week I represented a client at a court hearing. Not only that, but I participated by telephone. The phone was my nemesis for years—no visual cues, often less than a perfect signal. But I didn’t miss a beat. It was a tremendous personal victory, whatever the outcome for the client.

Getting a hybrid cochlear implant was scary, and it was hard. But it has been an absolute miracle for me. My world has opened up. Doors that were once barred shut for me in my career are open now. The beauty of music has taken on a whole new level. And I can understand so much more of what is said around me. It’s not for everyone, but it was right for me. My many prayers were finally answered—my God cured my hearing, through the research of many and the hands of one capable surgeon. And I’ll never stop being grateful for that.