Most of us are bombarded by unwanted noise every day of our lives; Honking cars, construction equipment, stereos cranked to their limit, people who shout into their cell phones. Bothersome and irritating to most of us, but for those who have suffered full or partial hearing loss, those sounds would be a welcome intrusion. Advances in technology are gifting more and more affected people with the return of their hearing. But technology can only do so much, there are still challenges to be faced by those who opt to use it. Arlene Romoff, a later life, deafened adult with a cochlear implant, shares with us some of the struggles she faced teaching her brain to work with the technology as we celebrate Better Hearing and Speech Month this May. Now on to Arlene Romoff.
Brains Rule!
I'm a late-deafened adult who has been using a cochlear implant (CI) for over 14 years. No one told me, back in 1997, when I got my first CI, that the process of hearing through these devices was a brain thing. I naively thought you just implanted the device, put the external processor on, did some practice listening and you'd learn how to hear with it. It seemed reasonable that the more work you put into it, the faster you would learn to hear sounds normally. I was in for a surprise.
Back then, people didn't know much about cochlear implants, so I began chronicling my experiences to help educate about this miraculous technology. I initially wrote email updates, with that material becoming the basis for my first book, Hear Again - Back to Life with a Cochlear Implant (Sterling 2002). The learning process was not quite what I had expected that my perception of sound could change even if I had done nothing directly to make that happen. I routinely had my programming updated, to optimize the sounds I would hear. I had originally assumed it would be like tuning a piano, with tweaks here and there resulting in perfection. But that's not how hearing with a cochlear implant works. The process entailed continually fine-tuning the programs as much as possible, but then it was up to my brain to figure out how to make the most of the signal it was receiving. Simply put hearing with a cochlear implant was a brain thing no other way to describe it!
Conventional wisdom about practicing to make perfect or working harder or longer to speed the process had to be thrown to the winds! I practiced listening to speech and music and kept my programming appointments but that only got me to the base of the altar of the brain. It was my brain that would decide how to use these resources, and how it would impact my speech comprehension, enjoyment of music, and functioning in noise.
Even after 14 years, the novelty of this reality still hasn't worn off the power of the brain to alter my sound perceptions, and even impact behavior, is mind-boggling almost unbelievable if I hadn't witnessed it myself. But I did get used to understanding that I could only do so much, and trust my brain to get me to as normal as possible patiently. And so, I routinely referred to my brain as if it were some other entity entirely. And so did others with cochlear implants - as we casually referred to our brains as if we were talking about a friend.
You can imagine that after many years of doing this, I didn't think talking about my brain was anything noteworthy or exceptional that is, until I got to my weekly exercise class. My instructor, Janet, always talked during the class, creating a relaxed interactive social environment. I wrote about this experience in my second book, Listening Closely: A Journey to Bilateral Hearing (Charlesbridge/Imagine 2011) and this excerpt (on page 81) is the perfect example of how everything we do is controlled by our brains, whether we realize it or not!
"Every so often, Janet introduces some new approaches to old routines. At the last session, we were seated on the mats with our legs somewhat contorted, and she told us to lift one leg up a few inches. I did it, but not easily. My brain is not happy about this, Janet! I called out. She looked back at me quizzically. Your brain? Uh-oh. I just realized that I was now in the real world, the hearing world, and no longer in my enchanted CI realm where brains rule. Hearing people don't usually refer to their brains in the third person! Well, it's their loss that they don't understand that everything that happens to them is at the pleasure of their brains! So I explained that their brains were giving them feedback during all the exercise maneuvers in this class. Whether it was the balance exercises (Hang in there, we can do this!) or which weights to work out with (You expect me to lift how many pounds? Okay, we'll give it a try.), or those new routines (You have to be kidding - we weren't meant to do this!) To me, it seemed quite routine to see everything in those terms. I'm still not quite sure that I convinced Janet of that, however."
I've met people who think that the more hours they put into listening practice, the better they'll get and the faster they'll get there. But therapy is just part of the process with the overriding mantra being practice and patience. When I opted to go bilateral three years ago, implanting my other ear, my brain was challenged once again, merging signals from two ears while figuring out directionality. I often joked that my brain did its best work at night mulling over what it had learned during the day, and creating a new reality in the morning.
It's not hard to imagine something similar happening with physical and other therapies that are designed to enhance or return human function. There are certainly direct results from physical therapies that have a basis in anatomy, but there is also that unknown brains rule aspect that heals, restores, motivates, and uses powers beyond our normal expectations. The tip-off is through my cochlear implant experiences that the brain can change our perceptions, perspectives, and physiology more than we ever might imagine. If you don't believe me, ask my brain it seems to have a mind of its own.
About the Author
Arlene Romoff had normal hearing growing up, but when a slow degenerative hearing loss left her profoundly deaf, she received a cochlear implant. An ardent advocate for people with hearing loss, she is past president of the Hearing Loss Association of NJ and author of two books on hearing loss and cochlear implants, as well as articles on related subjects. Considered an expert on hearing loss, she is consulted and speaks on a wide range of topics including cochlear implants, assistive technology, accessibility, advocacy, and sensitivity training. You can find out more about Arlene on her website Listening Closely and read more about her journey back to hearing on her Blog.