By the Way, She Has a Cochlear Implant

What if hearing aids were as unremarkable as glasses? This is an idea – a goal – that I and others have been tossing around for years. How to remove the stigma and lower the cost of hearing aids so that they are used as casually as glasses.

Amazon Prime Video is showing an online series that does just that – and more. The central character in “Undone,” 28-year-old Alma, wears a cochlear implant. In the first minutes of the first episode we see Alma putting a cochlear implant on her ear as part of her morning getting-dressed ritual. No comment is made about it. It’s just there, part of who she is.

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Alma, left, and her cochlear implant. Undone, Amazon Prime Video

The implant is white and Alma’s hair is black, so it is often visible. But it’s visible in an unremarkable way. It’s not until well into the series that we find out why Alma wears it, and how she lost her hearing. After she had chicken pox as a child, her parents realized she wasn’t hearing. At first they sent her to a Deaf school, where in flashbacks we see she learned to sign and was happy with other kids who were also Deaf. But Alma’s parents wanted her to get an implant, and Alma reluctantly agreed. We briefly see her working with a hearing-rehabilitation counselor after the surgery.

Alma has a lot of problems, but hearing loss isn’t one of them. The implant occasionally is part of the plot, although as with the first scene when we see her putting it on in the morning, it goes unremarked. When Alma wakes up in the hospital after an accident, she can’t hear until someone hands her the implant. At one point she throws it on the floor in frustration – but the frustration is not over her hearing. For Alma, throwing the implant is the same as throwing a shoe across the room (although potentially much more costly – don’t throw your cochlear implant across the room).

Amazon describes Undone as a “genre-bending, animated dramedy that explores the elastic nature of reality through its central character, Alma.”  The show isn’t about hearing loss. It’s about time travel, altered mental states, mental illness, a dead father and a mystery about his death. The animation is beautiful, hyper-real but also ghostly. Every once in a while the world flies apart or Alma falls down a rabbit hole, and the animation makes it believable.

I have some differences with the show as regards hearing loss. Alma’s hearing loss is bilateral and she’d probably wear two implants rather than one. She also has what must be a remarkably well fitting earpiece, because it never falls off no matter how much she’s tossed and turned around by her version of reality. And then of course it also survives being thrown across the room.

But how great to have a cochlear implant play an almost incidental role. Alma’s cochlear implant implant is as unremarkable as glasses.

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For more about living with hearing loss, read my books, available at Amazon.com and Barnes and Noble, and maybe at your favorite bookstore or library. If it’s not there, ask for it!

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Resilience

Whenever I am with a group of people with hearing loss, as I was last week at the annual convention of the Hearing Loss Association of America, I am impressed by the hurdles so many have overcome. Sudden or severe hearing loss is an ever-present challenge all on its own. So many at Convention, however, also have complicating factors: vision loss or blindness, tinnitus, vertigo or dizziness. Many have hearing dogs to assist them, some use motorized wheelchairs. All of them, if they have made it to Convention, also have strength and resilience. They wouldn’t be there unless they did. Many also have another crucial asset: a sense of humor.images

This year’s keynote speaker was Rebecca Alexander, author of “Not Fade Away: A Memoir of Senses Lost and Found.” She has Usher Syndrome Type 3, which results in blindness and deafness. I first came upon Rebecca when I reviewed her book in the New York Times in February 2014. She is an inspiring speaker (with a sense of humor) and if you have a chance to hear her speak, don’t miss it. In the meantime, read her book. And soon you’ll be able to see the movie, starring Emily Blunt. Here’s a link to her website. 

Rebecca began to lose her vision at age 12. By the time she was 19, her deafness had been diagnosed. Her trials seem, in retrospect, Biblical. She developed a severe eating disorder. Her twin brother, Daniel, was diagnosed with bipolar disorder that was resistant to treatment. Her boyfriend got cancer. She had tinnitus, with auditory hallucinations: a woman screaming at night, a jackhammer.

In spite of all this — or maybe because of it — she was driven to succeed. As a teenager at summer camp, she set off at 3 a.m. for a five-mile swim across a lake. In her early 20s, (by then well into deafness and blindness) she trained for a weeklong AIDS-benefit bike ride from San Francisco to Los Angeles. She ran extreme-athlete events and taught spin classes. She swam from Alcatraz to shore. She climbed Mt. Kilimanjaro with her sister. She climbed the treacherous Inca Trail at Machu Picchu: “My lack of peripheral vision made it easy to block out the deadly fall that you could take on either side,” she dryly comments in the book.

She pushed herself professionally as well. She has a double M.A. from Columbia in psychology and public health and has a successful private psychotherapy practice. As one friend wrote in an interview about Rebecca, “I think she keeps going 100 miles an hour to not have to process it all.”

Maybe, but as Rebecca wrote in her memoir: “If there’s one thing you absolutely need with a disability like mine, it’s resilience. I’m not talking about strong will and zest for life, either — but pure physical resilience. When you are going blind and deaf you are basically an accident waiting to happen.”

And happen they did. Just before she left for college, she fell out of her second-story bedroom window, mistaking it in the dark — and a drunken stupor — for the door to the bathroom. She broke virtually every bone in her body in the 27-foot fall onto a flagstone terrace, except for her neck and her head. The accident — and her recovery, which left her with a limp — taught her “something integral to who I am today,” she writes, “the perseverance I would need every day of my life.”

Today she has some vision and can focus on a speaker well enough to read lips. She has two cochlear implants and hears well with them. The Rebecca of the 2014 book was an astonishing person, but I worried that it all might come crashing down on her. Seeing her strong and beautiful and telling her story at Convention was clear evidence that she has overcome adversity that most of us can barely imagine. But her audience too was made up of people who have overcome adversity that many of us can barely imagine.

As Rebecca says in her book, what choice is there? “People often tell me I’m an inspiration. I’m never sure what to say.” She short-changes herself. She is an inspiration, as are so many with disabilities.

 

This post is partly adapted from my review in The New York Times: “Young, Stricken and Determined to Fight.”

For more about living with hearing loss, read my books, available and Amazon.com and Barnes and Noble, and maybe at your favorite bookstore or library. Smart Hearing Cover final

 

 

 

 

 

 

My New Book

SMART HEARING: Strategies, Skills and Resources for Living Better with Hearing Loss. Smart Hearing_Cover_highres

You can get it online at Amazon or Barnes & Noble, in paperback or ebook for Kindle or Nook.

If you’re one of the the millions of Americans who have experienced hearing loss, whether newcomer or longtime veteran, this book is for you. It’s also for your friends and family, employers, counselors, clergy. Hearing loss is much misunderstood.

If you follow my blog, you’ve read some of this, but there’s much much more. Smart Hearing is an easy-to-read, comprehensive look at a big, confusing field. I hope you’ll read it, and share it with others who don’t seem to fully get what it is like to have hearing loss.

The opening chapters are about the basics: how to find an audiologist, how to buy a hearing aid, and how pay for it. Later chapters guide you through the world of assistive listening technology, CART captioning, hearing loops, and telecoils. Find out what a cochlear implant is, and who can benefit from one. Chapters on tinnitus and vertigo offer suggestions for prevention and treatment. (In the case of vertigo, some of the suggestions are from personal experience.)

The past year has been a tumultuous time in the hearing-health field. Smart Hearing untangles the confusion about over-the-counter hearing aids, PSAPs, the FDA and what it approves and what it doesn’t.

Everyday experiences are often frustrating for those with hearing loss: dinner parties, travel, work, restaurants. There’s a chapter on managing each of these challenges.

Finally, Smart Hearing urges reader to take note of the sometimes significant health costs of not treating hearing loss.

I hope you’ll read it and share it, and maybe even get your library to order it.

How I Learned to Love My Cochlear Implant.

In 2013 in my first book, “Shouting Won’t Help,” I wrote about the difficult experience I had adjusting to a cochlear implant I received in 2009. That section was excerpted in Bloomberg View and it is still easily available online.shoutingwonthelp

I often get letters from people who have seen the article and are worried by the information in it. They write to ask if they should get a cochlear implant. (Needless to say, this is a question only they and their medical professionals can answer.) Part of the concern stems from the Bloomberg title, “Cochlear Implants Are Miraculous and Maddening.” If you read the article carefully, as I just did, you won’t see me damning cochlear implants. But you will see me raising some caveats.

I am 100 percent in favor of getting a cochlear implant if you qualify for one, and if your hearing aid no longer works for you. I am also 100 percent in favor of aural rehabilitation after the implant. If your implant center doesn’t offer aural training, look for it elsewhere. A speech language-pathologist is one possible provider. There are many online training programs, the best known of which is L.A.C.E. This is a graduated program that starts with speech at a decibel level you can hear (this is determined before you start the program) and gradually increases the noise level in the background. I have written about aural rehabilitation previously on this blog, and you can find other suggestions there.

So how did I come to love my cochlear implant after my initial tepid embrace?

The first answer is practice. I have taken formal and online aural rehabilitation courses. I’ve worked one on one with a speech language pathologist. I listen to recorded books and then read the text to make sure I’ve gotten it right.

The second answer is consistent use. I wear the implant all day every day.

The third answer is technology. The cochlear implant I got in 2009 was not nearly as sophisticated as the replacement implant I got in 2014. (Most implant companies upgrade the external processor every five years.)

The fourth answer is support. I am active member of the Hearing Loss Association of America. We meet regularly and we share tips and experiences. I am always learning new things about hearing.

The fifth is to have reasonable expectations. Is my hearing perfect? Far from it. I need assistive listening devices and captions to hear in a group. I use captions to watch TV. I use captions at movie theaters. I say “What?” a lot. But I live an active daily life in the hearing world, and rarely feel disabled.

But without my cochlear implant I would hear almost nothing. My hearing loss is progressive and the hearing in my hearing-aid ear continues to drop. I am already planning for a second cochlear implant. I qualify now (many times over) but my hearing aid is adequate and this is one area where I follow my own advice: If you can still hear with a hearing aid, hold off on a cochlear implant.

If your hearing aid is no longer adequate, start your research. I have written a great deal about cochlear implants and with every writing my optimism grows. The paperback version of “Shouting Won’t Help” is more upbeat on cochlear implants than the hardcover was. My 2015 book “Living Better with Hearing Loss” offers more updated information than the earlier books, and also reflects my comfort and satisfaction – and gratitude! – for having a cochlear implant.

 

For more information on living with hearing loss, see my books on Amazon.com.

The Toll of Hearing Loss is Global

A new study published in the prestigious medical journal The Lancet offers an unblinking look at the tremendous burden of hearing loss worldwide. “Global hearing health care: new findings and perspectives” was published on July 10th. The authors are Blake S. Wilson, Debara L. Tucci, Michael H. Merson and Gerard M. O’Donoghue. The first and fourth authors organized a three-day discussion at Duke University on the subject, which was followed by a massive review of the existing literature.images

Half a billion people have disabling hearing loss, a number that is far higher than earlier estimates. This is not just a little trouble hearing the TV, your wife mumbles, this restaurant is too noisy hearing loss. This is disabling hearing loss.

“Disabling” means that 500 million people worldwide cannot hear well enough to learn to speak (if they are children), with resulting lower literacy and lower quality of life. If they are adults, “disabling” means they may have a sense of profound isolation, typically withdrawing from community and family, prone to psychological illness and likely to develop earlier and more severe dementia than their peers. “Association is not causation,” as the authors remind us, and in fact causation is the subject of a number of ongoing research studies into the hearing loss/dementia link. But the numbers are alarming: “Indeed, the hazard ratio for developing dementia increases two, three, and five times with mild, moderate, and severe losses in hearing, respectively.”

Eighty percent of those with disabling hearing loss live in low and middle-income countries, and their hearing loss has severe economic and personal consequences. But those in wealthy countries are not immune to these consequences. “In high-income countries… adults with disabling hearing loss have twice the prevalence of unemployment and half the median income of their normally hearing peers.”

The answer, the authors say, is twofold: prevention and treatment. Prevention and treatment of childhood hearing loss would be most effective in poorer countries. Special attention to adults would be more effective in wealthier areas.

Prevention could reduce prevalence by 50 percent or more in some regions of the world, according to the World Health Organization. These preventive efforts include vaccinations against rubella, measles and mumps; education and treatment of HIV, syphilis, hypertension and other conditions. It also includes maternal nutrition and neonatal care, attention to ototoxic drugs, and and universal hearing screening of infants. Chronic or acute otitis media should be treated promptly with antibiotics.

Treatment costs could be reduced by strategies like more competition and lower prices for hearing devices, a change in service provision – and “with disruptive and parsimonious designs” of hearing aids and cochlear implants.

These parsimonious and disruptive designs include many of the solutions now being discussed in the United States: the use of personal amplification devices (PSAP’s), smartphone apps, elimination of the need for a physician’s clearance, revision of regulatory requirements to allow “more competition and comparison shopping for hearing aids.”

Sound familiar? That’s because these are the very same recommendations made by the National Academies of Sciences, Engineering, and Medicine in June 2016, and the earlier PCAST report to the President.

The report calls for a global initiative to reduce “the currently unbridled burden of hearing loss.” It cites the interagency partnership VISION 2020, which began in 1999 with a goal of reducing avoidable vision loss by 2019. Indeed, as the study points out, disabling hearing loss is almost twice as common as disabling vision loss. In the category of mild to complete loss, hearing loss outnumbers vision loss by 46.2 v. 24.5 million in years lived with disability. Hearing loss is the fourth leading cause of disability worldwide.

The report is complex and fascinating and if you are interested in reading the full report please contact me via the comments section on this blog.

And if you suspect you have hearing loss, be grateful that you live in a country where you may be able to find treatment at a reasonable cost. Over the counter hearing aids will not become a reality for several years, but in the meantime get a hearing aid if you can afford it, try Costco or good online retailers for lower prices, get a PSAP if you can’t afford a hearing aid, try out some smart phone apps. But don’t ignore it.

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For more information about living with hearing loss, read my book “Shouting Won’t Help: Why I and 50 Million Other Americans Can’t Hear You. 

Considering a Cochlear Implant? You’re Never Too Old.

Is there  an age limit for cochlear implant recipients? I asked this question of several cochlear implant surgeons around the country. Their answer? Never.

All have implanted patients in their 90s and, as Anil Lalwani, of New York-Presbyterian/Columbia University Irving Medical Center said, he “routinely” operates on patients over 80. His oldest patient is 93.

Surgeon Jay Rubinstein, at the University of Washington Medical Center, has performed cochlear implant surgery on a 96-year-old. Like the others, he thinks chronological age is -not the issue, it’s a person’s overall health.

In other words, it’s not so much how many years you’ve lived as how well your body has held up. In April 2014, Mollie Smith, 99, became the oldest cochlear implant recipient in Europe.

Cochlear implant surgery takes about two to three hours and requires general anesthesia or heavy sedation, so the ability to tolerate anesthesia is essential. Even so, a 2009 study by Dr. Lalwani and others, found that cochlear implantation in the elderly carries minimal risk from anesthesia.

One of the important preexisting conditions that may preclude surgery is moderate or severe heart and/or lung disease, which could make anesthesia potentially dangerous, said Rick Hodgson, a surgeon with Head and Neck Surgical Associates in Portland, Ore. The oldest patient he has implanted was 92 and he’s doing well, Dr. Hodgson said, noting that as a surgeon he looks more at “biologic age than chronological age.”

Darius Kohan, an otologist-otolaryngologist in New York (who was my cochlear implant surgeon at New York Eye and Ear Infirmary), told me he implanted a patient who was 95 years 6 months old. The patient is still using the implant 21/2 years after surgery.

Even dementia may not be a disqualifier, the surgeons said, assuming that the patient is not violent or likely to destroy the external parts of the implant. A study published last summer on implantees with dementia found a significant cognitive improvement a year later. The patients also received regular auditory rehabilitation. It was not clear from the study whether it was the implant itself or the aural rehab that made the difference in improved cognitive abilities.

Jack Wazen, a surgeon and  partner at the Silverstein Institute and director of research at the Ear Research Foundation in Sarasota, Fla. (and a fellow board of trustees member with me for the Hearing Loss Association of America), was the most conservative of those interviewed on the question of dementia, saying he routinely implants those with mild to moderate cognitive decline, but not those with severe decline.

All agree on the importance of auditory rehab for older patients. As Dr. Hodgson put it, “Auditory rehab helps get the most out of the process. This is amazing and life-changing technology, so why wouldn’t we want to maximize the impact on someone’s life?” He added that younger implant recipients might still be in the workforce and get stimulation from their everyday environment. The older recipients are less likely to get that stimulation. Also important, as all the surgeons agreed, is a social support system. This doesn’t necessarily mean a companion in the home, but a regular conversation partner is essential. Social interaction is important in general for quality of life.

The one issue on which the surgeons differed was which ear to implant: the worse or the better one. With younger implantees, the decision is usually to implant the worse ear, to preserve the natural hearing in the good ear, often using a hearing aid in the good ear. But an elderly person may have been deaf for some time in the bad ear, and thus less likely to benefit from the implant.

Although most said that they would consider implanting the deaf ear, they might not if the ear had been deaf for a long period of time. Dr. Wazen specified five years or more. Dr. Hodgson pointed out that “the longer the duration of hearing loss, the higher the chance of diminished benefit due to deterioration of sensory elements in the inner ear.”

Both Dr. Lalwani and Dr.  Kohan said they would implant the worse ear. Dr. Kohan’s reasoning is that if the patient is still able to hear with the hearing aid ear, there may still be enough plasticity in the brain, with crossover from the nonhearing ear, to make an implant in the deaf ear function. Dr. Lalwani went further: “I would always implant the deaf ear. One does not lose anything from doing so. If the outcome is less than satisfactory, the other ear could always be implanted down the road.”

As for outcomes, all the physicians agreed that older recipients do well with cochlear implants. Dr. Kohan mentioned benefits like delayed mental deterioration, better quality of life and more independence.

Dr. Wazen is completing a study comparing the results among patients over 80 with those under 80. The study found no differences in healing or complication rates. All patients did better with the cochlear implant than they had with a hearing aid. The study did find that speech recognition scores with implants were better in the younger group. This may be due to a number of factors, Dr. Wazen said, “including length of deafness, poorer cognitive function [in the older group] and aging changes in the brain.”

So if your doctor recommends an implant, go for it, no matter what your age. “When elderly patients tell me they are too old for a CI,” Dr. Rubinstein said, “I tell them age is not important unless they are a cheese.”

This post first appeared on AARP Health on February 22, 2016.

What Would Helen Keller Do?

 

“Blindness cuts us off from things, but deafness cuts us off from people.”

Bouton: What Would Helen Keller Do?

                                                                       Helen Keller — Pictorial Press Ltd / Alamy Stock Photo

Did Helen Keller actually say this? No one knows.

She did express the idea in different ways. In one letter she wrote, “The problems of deafness are deeper and more complex, if not more important, than those of blindness. Deafness is a much worse misfortune. For it means the loss of the most vital stimulus — the sound of the voice that brings language, sets thoughts astir and keeps us in the intellectual company of man.”

Helen Keller lost her vision and her hearing when she was 19 months old, from an infection that was probably scarlet fever or meningitis. Like many toddlers at that age, she had some spoken language, which was presumably lost in the trauma of her illness.

Today Helen Keller’s parents would be offered the option of cochlear implants and speech therapy. Because she was also blind, conventional sign language would not be an option. The Deaf-Blind today use a form of sign language called fingerspelling,  or tactile sign language, which Keller herself used. She also learned to speak, although her speech was labored and difficult to follow.

Those with serious hearing loss often cite this quote. Although cochlear implants and hearing aids restore hearing, it may be to limited degree. Even with additional assistive devices and good lip-reading, a person with severe to profound hearing loss may still have trouble following speech in any but ideal circumstances. I know, because I’m one of them.

Nevertheless, I am certain that, given her blindness, Helen Keller would have embraced today’s cochlear implant technology. In a remarkable historic video, Keller speaks about the loss not of sight or hearing but fluid speech:

“It is not blindness or deafness that bring me my darkest hours. It is the acute disappointment in not being able to speak normally. Longingly I feel how much more good I may have done, if I had only acquired normal speech. But out of this sorrowful experience I understand more clearly all human striving, wanted ambitions, and infinite capacity of hope.”

When she died in 1968, at 87, the New York Times cited her many accomplishments: “she was graduated from Radcliffe; she became an artful and subtle writer; she led a vigorous life; she developed into a crusading humanitarian who espoused Socialism; and she energized movements that revolutionized help for the blind and the deaf.” She was a “symbol of the indomitable human spirit.”

It is hard to imagine that she could have “done more good” with the ability to speak. But her quotes suggest that she would have embraced the chance to hear “the sound of the voice that brings language, sets thoughts astir and keeps us in the intellectual company of man” — and to respond with speech.

Katherine Bouton is the author of “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids,” and a memoir, “Shouting Won’t Help: Why I — and 5o Million Other Americans — Can’t Hear You”. Both available on Amazon.com.

This essay first appeared in a slightly different form on AARP Health.