By Francesca Olsen
Berkshire Eagle Health Quarterly Spring 2013 | March 26, 2013
When you’ve always lived without something, you tend to adapt in its absence. But if you suddenly get that something, do you ever get used to having it?
This kind of philosophical question plays out often in the deaf community, and with people who are not wholly deaf but who have struggled with hearing loss their whole lives. A cochlear implant, a mechanical device that transmits sound when surgically implanted, can, in a way, return the sense of hearing to someone who wears it.
Cochlear implants don’t magically restore hearing. They are small electronic devices with a microphone, transmitter and speech processor that can give people who cannot hear a “useful representation of sounds in the environment,” according to the National Institute on Deafness and other Communication Disorders.Part of the device is implanted under the skin, and an external component is worn with a microphone and transmitter. The transmitter converts sounds into electric impulses and an electrode array, which is surgically implanted, sends those impulses to the auditory nerve.
This is very different from a hearing aid, which simply amplifies sound. A cochlear implant is a processor that communicates with the auditory nerve, and it takes repeated adjustment and lots of after-care to “relearn” and understand what you’re hearing.
Jonathan O’Dell is an assistive training technologist at the Massachusetts Commission for the Deaf and Hard of Hearing. He also has bilateral cochlear implants; he lost his hearing around age 10 as a result of meningitis. He first wore hearing aids, but after they stopped working, he looked into implants. His left ear was implanted in 2011, and after a successful adaptation to the surgery (he went from 0% speech discrimination, or understanding words without speechreading, to more than 50 percent), he decided to have his right ear implanted in February 2012.
In his role with the commission, he answers questions about cochlear implants for those who are curious, and he shares his story. He said he’s done this more often in recent years, as cochlear implants are becoming smaller and more popular.
“It was absolutely worth it for me and most other late deafened adults I’ve talked to who have had it done,” O’Dell said. He said he is more confident about approaching someone for conversation than when he had hearing aids. Hearing aids, O’Dell said, make everything louder, but they don’t make it any easier to understand what people are saying when you take background noise into account.
Pam Fisher, of Glens Falls, N.Y., a writer and outreach coordinator, was diagnosed at age 9 with severe, progressive hearing loss. She got a cochlear implant in 2012, and while it wasn’t the solution of her dreams, Fisher says the implant has helped her hear, and it’s helped her overcome years of feeling isolated. She got the surgery in April 2012.
Fisher is not deaf; she has 20 percent hearing in her left ear. “I still had, and have, hearing,” she said, but “I couldn’t survive if I wasn’t as strong a lip reader as I am.”
The sounds Fisher hears with the implant have “a very robotic quality.” She’s had it for 11 months and says she’s still getting used to it. She can hear the microwave beep — she didn’t know it beeped before — and she is now accustomed to hearing the voices of her husband, son and daughter.
“I’m still not truly used to it,” she said. “It has not been an instant miracle. I still have to try and focus to hear. with the CI I can hear like never before, but I can’t always understand what I’m hearing.”
Fisher chronicled the experience on her blog, Clarity Now, at pamelaleefisher.blogspot.com. The surgery came with painful recovery, a strange metallic taste and then weeks of healing before the implant could be activated. On the blog, she wrote about her activation experience, which was quite a departure from the emotional ones posted on YouTube she had been watching in anticipation of her own.
The audiologist turned the implant on, put headphones on Fisher and started the test. Fisher heard beeping. “And then I heard a sound I never heard before,” she wrote on the blog. “For the first time I can remember, I heard a high-pitched tone during a hearing test, and a happy tear rolled down my cheek.”
But after the initial test, in the first few moments of the implant’s activation, her son started talking.
“I heard total bizarreness,” she wrote.
Then it all poured in — the doctor tapping on a desk, the cars outside, ancillary noises our brains generally move to the background.
“My reaction to my new world of sound was, ‘what the hell is this?!'” Fisher wrote.
It’s fairly common to lose all hearing in the implanted ear, and Fisher’s right ear is now devoid of natural hearing. “I admit, I do miss it,” she said. “Still, I’m hopeful that as I continue to practice with the CI, the sound quality will become more natural, and voices will become more clear. I’ve always had the mindset that I had to lose something to gain something better.”
The Massachusetts Office of Health and Human Services estimates 8.6 percent of the state’s population is deaf or hard of hearing. The FDA estimates that nationwide, 42,600 adults and 28,400 have cochlear implants. The Commission for the Deaf and Hard of Hearing serves thousands of people (O’Dell estimated half a million people in the commonwealth are deaf or hard of hearing), including in the Berkshire region, where 3,966 requests for sign language interpreter were logged in fiscal year 2012.
Some in the deaf community are adamantly against these implants. The idea that deafness is a disability that must be cured lies at the heart of the debate.
“The media often describe deafness in a negative light, portraying deaf and hard of hearing children and adults as handicapped and second-class citizens in need of being “fixed” with cochlear implants. There is little or no portrayal of successful, well- adjusted deaf and hard of hearing children and adults without implants,” reads the NAD’s official stance on cochlear implants.
But the debate isn’t black and white. Any surgery is a deeply personal decision.
O’Dell said one common argument against cochlear implants is that they are installed by surgery, and surgery has risks — the device may not work as intended, or the recipient may lose any remaining natural hearing.
When O’Dell got his implants, his deaf friends didn’t judge his decision.
“Deaf individuals respect the decision of any adult to make their own communication choices,” he said.
The National Association of the Deaf (nad.org) recognizes implants as one potentially beneficial way to hear.
“My personal observation has been that what resistance there is against CI’s is usually directed against the practice of routinely implanting newborns who have been diagnosed with hearing loss, as if the inability to hear were in and of itself a defect.,” O’Dell said. “For people who have used American Sign Language (ASL) their whole lives, a language which is entirely visual and not dependent on hearing, the idea that a person would be seen as somehow defective for not being able to hear is offensive.”
When it’s your own inability to hear, it is easy to feel “defective.” Fisher said she felt deeply insecure about her hearing loss for years.
“I never talked about it and would become upset or angered if someone else pointed it out. Pretending to be a hearing person when I wasn’t was more exhausting than anything,” she said.
But the implant, and writing about the process on her blog, helped her immensely, she said. Now she has come to terms with a lot of the feelings that once burdened her.
“One aspect of this journey that I recently acknowledged is that just because I now have a CI, it does not remove my hearing impairment. I think I had hoped that once I had the surgery, I would escape the “hearing impaired world.” That’s not true,” she said. “Since getting the CI, I feel as though I’m evolving into who I’m truly meant to be.”