Update: March 2016.
I often hear from people who read this post and were discouraged about the idea of getting a cochlear implant. I wrote the book from which this was excerpted in 2012, not long after I got my c.i. I did have a very hard time adjusting to it, but in part that was because my whole life was in disorder: ailing parents, other relatives who were sick and dependent on me, losing my job. I didn't have the time to devote to practicing with my cochlear implant.
Since then I have done auditory rehab both with speech language pathologists and online. I continue to do both. My hearing with the implant is much improved, although as is the case with many who have been deaf in the implanted ear for a long time (three decades in my case) I will probably never fully recover the hearing in that ear. But I wear my cochlear implant every single day. I never regret for a minute the decision to get it. I would (and probably will) do it again, as my better ear continues to deteriorate.
This is the third part of a three-part excerpt of "Shouting Won't Help" which appeared on Bloomberg View on 2/19/13.
Cochlear implants are most successful when they are used with pre-lingual children. Most implant surgeons prefer to do the surgery between 6 months and 18 months, usually one implant at a time. Since the cochlea is the same size at birth as it is as the child grows, the implant never needs to be replaced. Federal law requires that state Medicaid programs pay for cochlear implants in children under 21.
I'll write about implants in children at a later date. The excerpt that follows is about the experience of a late-deafened adult (me) and the triumphs and tribulations of regaining one's hearing through a cochlear implant.
“You’ll never be deaf,” my longtime ear doctor, Ronald Hoffman, said to me years ago. At the time, I thought he meant I’d never lose all my hearing.
What I know now is that technology would take over when my ears no longer worked. Through a cochlear implant, I would continue to hear long after my ears ceased to function.
Cochlear implants have been available in the U.S. since 1984, but only a very small minority of the deaf and hearing impaired has them. The Food and Drug Administration estimates that 250,000 Americans (out of 48 million with hearing loss) could benefit from a cochlear implant.
As of December 2010, only 71,000 people had one. Medicare, Medicaid in many states and most private insurers cover the cost of more than $75,000. (Very few cover the cost of hearing aids, from $2,000 to $6,000 apiece, and even then the reimbursement is paltry.)
A cochlear implant consists of three components: a microphone to pick up sound from the environment; a speech processor, which transforms the input from the analog world into a radiofrequency signal; and a receiver, a tiny computer surgically implanted under the scalp, which converts the radiofrequency signal into a digital one.
The receiver sends the digitalized information down the implanted cable and into the cochlea, where the electrode array stimulates the neurons that send the signal to the auditory cortex. With luck, the cortex will hear those signals as identifiable sound.
The implant itself, in my case an oval device the size of two quarters side by side, was placed under the skin about two inches northeast of my left ear. I can feel the outline of it under my hair. If I ever go bald, the implant will look like a plateau rising out of the landscape of my skull.
To insert the implant, the surgeon first has to drill through the petrous bone, the hardest bone in the body. “You’ve got this delicate little sensory structure with all these incredibly delicate hair cells encased in the hardest bone in the body,” Charles Liberman of Harvard Medical School told me.
It’s completely inaccessible, except with the drill bit. Once the surgeon has drilled into the cochlea he has to position the electrodes so that they line up with the proper neurons.
At a conference at Gallaudet University, I saw a video of the insertion of the electrodes, 1 or 2 millimeters at a time, into the spiral cochlea, which measures just 9 millimeters across and turns on itself two and a half times. It was hard not to think of a very skilled Roto-Rooter operation.
Implant surgery is done on an outpatient basis, though you are sedated for several hours. The area where the drilling takes place, the skull base, is filled with dozens of blood vessels and nerves, including the facial nerve just millimeters from the drill. You want a surgeon who has done the procedure before, preferably many times.
When I woke up from the surgery, my head was swathed in a bandage that made me look like a refugee from “Swan Lake.” My ear and skull were bruised and tender, and I had a raw scar behind my ear that would take weeks to heal. Only then can the implant be activated.
The wait for the implant to be turned on is an anxious time for many patients. Even though an audiologist has determined that the connection between the electrodes and the neurons has been made, there is no way to tell how well, or even if, the recipient will be able to hear. Will it work? What will I hear?
For those who have been deaf since birth, any sound at the point of activation can seem miraculous. For a formerly hearing person, the sound coming into the ear initially is just noise. No matter how modest your expectations, the moment can be deeply disappointing.
But within minutes, as the audiologist works with the preset programming, making adjustments on her computer, the noise begins to resolve into recognizable sound. With luck and practice, the brain will learn to hear the sounds as words, and the noise as the recognizable whoosh and clatter and rustle of everyday life.
The cochlear implant is indeed a miraculous device, restoring hearing to those who would otherwise live out their lives in silence. What the implant -- and the brain -- can’t do, however, is restore hearing to the way it used to be. Cochlear implants are a tremendous advance for people with hearing loss.
But they are not perfect. Stefan Heller, a researcher at Stanford University who has made significant advances toward restoring hearing loss through stem cell therapy, noted that except for patients who get implants in the first years of their life, the efficacy of hearing aids and implants can “vary substantially with regard to frequency discrimination, performance in noisy environments, as well as simple day-by-day tasks such as speaking on the telephone.”
My success with the implant has been mixed. My hearing is still poor in the speech frequencies. I rely heavily on my right hearing-aided ear, and I continue to have a great deal of difficulty with the vowel sounds. Bit or bet; prim or prom; lift, left, loft, laughed. They’re all one to me. I can hear the rustle of a palm tree but not what my husband is saying in the beach chair next to me.
My left ear, the implant ear, had been relatively nonfunctional for 30 years when I got the implant, though I lost all hearing only the year before. The neural pathways for language had received little stimulation and were atrophying.
The longer the period between the onset of deafness and the implant, the less plasticity the auditory neural pathways have retained. In addition, my neural pathways were trained to hear acoustically. Now they were being asked not only to function again, but to function in a different way than they once did.
Probably the greatest detriment to my success with the implant was the timing. My implant was turned on in October 2009. The months of October, November and December, when I left my job at the New York Times, were a period of intense personal and professional turmoil. I wore the implant, but I made little effort to train myself to hear with it.
Those first three months are crucial and should be filled with rehabilitative work, either with a speech language pathologist (which is routine for children but not adults) or through the many interactive programs offered online. I didn’t seriously start rehab until almost six months after implantation. That was too late.
Relearning to hear is in many ways similar to psychotherapy. Studies have shown that talk therapy, like antidepressants and other medications, actually changes the neural pathways over time.
The time I have spent trying to change the neural pathways in my auditory system has overlapped with the time I have spent trying to change the neural pathways that regulate emotional behavior. Those pathways -- which resulted in depression, anger and anxiety, often prompted by my inability to hear -- were as deeply entrenched as the auditory neural pathways that had come to recognize language only in the form of sound.
I imagine my brain sometimes, when I let my vigilance down, shooting off electrical connections down the old pathways, breaking through the fragile barriers like a car crashing through a sawhorse barricade onto an old road.
I have to back up, set the barricade up again and consciously turn down the new route, whether it is the newly formulated auditory pathway or the new emotional pathway. Both are still freshly paved, sticky, throwing up bits of gravel. Eventually, I hope, they’ll smooth out, solidify, become the easier way to go.
Before I could learn to hear with the implant, I had to learn how to keep it on my head. For the first several months, I was prone to pratfalls, the earpiece constantly slipping off, dragging the silvery magnet with it, or the magnet itself becoming attracted to an umbrella spoke or the chain on an overhead light, detaching itself and dragging the earpiece with it.
If I brushed back my hair, or turned my head, or zipped the collar of my jacket, or adjusted a scarf, off went the earpiece, sometimes flying across the room.
The earpiece is a handsome titanium curve the size of a large hearing aid -- a mammoth hearing aid, if you’re trying to keep it invisible -- powered by a rechargeable battery that snaps onto it. It’s designed to fit behind the ear.
The battery, the size of one joint of a thumb, was supposed to hug the back of the ear, behind the earlobe. But my ears weren’t made for nestling or hugging. They’re small. And, as my audiologist put it, “floppy.”
The real problem was that I didn’t want to acknowledge the device -- to myself, and especially not to anyone else. I did everything I could to hide it, and when it refused to stay hidden I scrambled furtively to cover up the evidence.
If the earpiece fell off, I’d shove it in my pocket instead of putting it back behind my ear. I tugged at my hair in a futile attempt to keep the earpiece covered.
I was all too eager to keep up the subterfuge and denial that I had hearing loss, but it was harder with a large piece of hardware behind my ear.
The wobbly earpiece wasn’t the only problem. The magnet itself has to be strong enough to hold the implant in place but not so strong that the pull of it would damage the skin underneath.
Once when I was cleaning the oven, the magnet came loose, and it and earpiece fell alarmingly close to a foamy puddle of Easy-Off. I worried it would fall into the toilet or onto the subway tracks.
The audiologist had me try a little plastic ear harness, something like a dog muzzle that fit over my ear and the implant holding it in place. I wrapped Band-Aids around the battery to make it less slippery and less visible. I tried moleskin.
Then my audiologist suggested wig tape -- double-sided tape designed to hold a wig steady on your head. It’s deviously tricky to expose both sides without getting your fingers stuck, or accidentally folding it onto itself. I finally got both sides exposed and the processor glued to my head.
But that night, when it came time to take it off, the tape ripped out the skin and hair that had gotten stuck to it. (I never wore wig tape again, but it turned out to be great for installing shelf paper, getting cupboard doors to shut firmly and holding a photo in place under a mat.)
Once I finally stopped worrying about the visibility of the implant processor, once I came out as a person with hearing loss, I had no more trouble with it. My ears are as floppy as ever, but the processor stays put, the magnet resists the lure of the umbrella spoke and it looks no sillier than those Bluetooth devices that very important people are always talking into.
Despite the advances in technology, and despite the promise of a cure, hearing loss is permanent, at least for now. Once you enter the land of the near deaf, you don’t leave. But you can learn to make it feel like home. As I’ve come to accept my hearing loss, I’ve replaced denial and anger with something more productive. I know I have to work to hear, that I have to practice hearing and practice listening. I have to turn off the captions on the TV. I have to pay attention and force my brain to work as hard as it can to understand, instead of shrugging and giving up.
Even with the imperfection of hearing instruments, it’s a good time to be deaf. Hearing aids and cochlear implants are increasingly sophisticated and someday soon will come close to mimicking the human ear. Hearing aids are widely available, and are sometimes even reasonable in cost.
Cochlear implants are more and more often an option for the hearing impaired. And then there’s e-mail. Critics such as Sherry Turkle, author of “Alone Together: Why We Expect More From Technology and Less From Each Other,” bemoan the death of conversation and the isolation of communicating through e-mail or text. But for those with hearing loss -- and many others who for one reason or another are not able to easily converse -- e- mail and texting are the lifelines that allow us to continue to be part of the world.
I spent much of my adult life, both personal and professional, faking it. Not even my closest friends knew the extent of my hearing loss. What a relief it is to be me. But old habits die hard. I’m open about my hearing loss, but I still guess at what’s been said, and often get it wrong.
“When are we eating?” my husband says. “Chicken,” I answer.