Being Born Blind Or Deaf And Seeing And Hearing For The First Time
Q&A site Quora. Photo: Quora
This question originally appeared on Quora. Answer by Cristina Hartmann.
Like they say, context is everything.
Those videos are flashes of a fleeting moment in someone's life that people deem as inspirational with little understanding of what's truly happening. Like most things in life, things are more complicated than a few minutes of sentimentality.
As someone who has undergone the process of "hearing for the first time" twice with bilateral cochlear implants, I can assure you that my experiences cannot be reduced into a 2-minute cute video.
Here's the real deal.
When I say I was born profoundly deaf, I mean that my deafness was so profound that my audiologist couldn't measure it with their instrument, which only went up to 120 dB. Amplifying devices, such as hearing aids and FM systems, didn't help at all--I considered them more decorative than helpful. The threshold for profound deafness is 75 dB, so I was especially profoundly deaf, which isn't all that common among children.[1]
Since my deafness was discovered at four months, I started to learn American Sign Language (ASL) by six months. This means that, by the time I received the first cochlear implant, my language and cognitive development were on par with my hearing peers.
Since I was an adept signer and a good communicator--you don't need a voice to connect with someone, after all--I viewed sound more as an abstraction, as one would think of a quark that is so small that you can't see it with your naked eye. I understood sound more in tactile terms, through vibrations I would feel when they placed the speakers on the floor at Brazilian parties where I'd dance the samba alongside my mother.
I was curious about sound, but never felt deprived because I didn't hear it. As a signer and someone who got along well in the Deaf and Hearing communities, I was a happy child, just the way I was.
First Cochlear Implant: No "Eureka!" Moment
When the FDA announced its approval of pediatric cochlear implants in the fall of 1990, my mother asked me if I wanted to get one. After a few questions, I shrugged and said "OK," curious about what all of the fuss was about.
I had no idea what I was getting myself into. I simply knew that I was going to hear ... something.
What I didn't know was that cochlear implants don't truly give you hearing. They create the perception of the sensation of sound by stimulating the auditory nerve using electrodes, which have a limited range of frequencies they can pick up.[2] My perception of sound is more of a low-resolution hologram than the real stuff.
After undergoing a battery of tests, both audiological and cognitive, I was approved to be one of the first few hundred children to receive a cochlear implant in the United States. In January 1991, I underwent the surgery.
A month later, I went in for the activation, my processor hooked up to a large computer. My audiologist activated the first MAP, which is a program that calibrates how much input each electrode (22 in my case) transmits to the auditory nerve. First MAPs are limited to avoid overwhelming the patient, so the "sound" you get in that session is very different than what you'll get 6 months later.
Since the audiologist didn't sign, my mother was the one who told me, "Raise your hand when you hear something." That statement left me baffled. What was I looking for? It was a bit like searching for Waldo when you didn't know what he looked like.
In that tiny, windowless room deep in the large Manhattan hospital, the audiologist began tapping away at her keyboard. Everyone stared at me, even a woman standing in the doorway whom I had never seen before. I felt the heavy weight of expectations on my shoulders. I had to do something.
I concentrated very hard, searching for the mysterious, indefinite Waldo. Whenever I felt anything, an itch or a breeze, I raised my hand slowly, searching everyone's expressions for whether I had gotten it "right" or "wrong." Nobody gave me any confirmation so I went on guessing.
25 years later, I realize the whole thing was a show that I performed. I knew this was a momentous--big!--event and I didn't want to disappoint.
Back then, most people viewed brains as a static organisms incapable of change after early childhood so there was a fair amount of skepticism about whether I--an old fogey at six--could even learn how to hear at all. We now know that the brain can adapt, forming new neural pathways and synapses in response to changes in the environment, such as the introduction of auditory stimuli.[3][4][5] This phenomenon called brain plasticity, however, isn't static: it becomes harder and takes longer to create new neural pathways as you get older.[4]
Brain plasticity is at the root of why a baby, a postlingually deaf adult, and a prelingually deaf children react differently to cochlear implant activation. Some of them already have neural pathways for auditory stimulation. Others are so young that their brains can quickly create new ones.[6]
As a congenitally deaf child (who was a bit long in the tooth at six), I had never formed the neural pathways for my brain to even begin processing auditory stimulation. In the fashion of the ostrich, my brain ignored the strange stuff and I remained as deaf as I had been an hour prior. That would change soon enough.
My mother and I left the hospital feeling dejected (she could tell I was faking) and decided to go to FAO Schwartz to make the best of the day. We started to walk through the busy, noisy streets of Manhattan. As we waited at a street corner, someone started a motorcycle down the block.
Something very strange happened. I felt something more tangible and real, but totally alien. It was like something was pricking my brain deep inside my brain.
My brain was burning new neural pathways for the new input and that sort of thing doesn't come without discomfort. It wasn't overwhelming pain, but an insistent and uncomfortable poke.
My mother describes my reaction as confused panic. "You were looking all over the place, trying to figure out what was happening." I didn't connect the sight of someone peeling out on a motorcycle with the sensation that an alien was poking around in my brain. That connection would take time for me to make, among many others over the years.
FAO Schwartz turned out to be a disaster. I was so twitchy and distracted that I couldn't enjoy the toys. After my mother took me back to the hotel, I collapsed on the bed, fast asleep by 5 p.m.
Forming new neural pathways is serious business and not for the faint-hearted, as I would learn in my following 11 years of speech therapy.
The Second Cochlear Implant: "Well, that was Unexpected."
Many years later I discovered that the strange woman standing at the doorway in 1991 had just observed her daughter's activation session. She wanted to see how my reaction would differ from her daughter's. "Once they started with the beeps, she screamed and cried," the woman told my mother.
When I got my second implant, I understood why that little girl screamed.
My 2004 surgery was a dramatic contrast to my 1991 one. As a six-year-old, I had been grinning as I was being rolled into the operation room. It was an adventure! As a twenty-year-old cognizant of the risks involved with major surgery, I was blubbering and clutching the sheet. This time, the incision was a neat little cut above my left ear, unlike the long C-shaped incision from my right temple to under my right ear.
The activation of my left cochlear implant would prove to be just as different of an experience.
As the audiologist began the beep sequence, I burst into tears and involuntarily clenched the left side of my face. She looked up, puzzled. "Why are you crying? You've had this before!" she said.
The pain was like sparklers going off on the left side of my head. The stimulation, as little as it was, completely overwhelmed me.
Even though I had already laid the neural pathways for auditory stimuli for my right ear, my brain was unprepared for the stimuli coming from the left side. Since my brain had already experienced this type of stimuli, it could process it, but it was still sensory overload. That stuff hurts.
It took me months to acclimate myself to the new implant, but in the meantime, I cringed every time I turned it on. As I said, laying new neural pathways takes work.
The issue of pain and discomfort involved with the activation of cochlear implants as well as overarching issues of speech training and oralism are fodder for the ongoing debate between the Deaf community and cochlear implant advocates. I didn't write this to fulfill any political agenda nor do I take sides in this debate. I stand by my assertion that getting a cochlear implant is a personal choice that will have very divergent results for different people. My story is mine alone and will differ from others.
I ask only that people take a moment to understand that a cochlear implant activation isn't some Shangri-La moment where a deaf person becomes hearing.
Most children will require at least some speech therapy, depending what age they received their implant. Training time ranges from a year to 12 (I clocked in at 11) and varies in terms of intensity. As they learn how to listen, their brains are doing heavy lifting by burning new neural pathways. Some of them will never listen or speak like someone born hearing due to various factors out of people's control.
Hearing -- or, rather, the perception of it -- isn't a light switch you flip on and off. It's serious business.
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