I very much appreciate when someone responds to my blog pasts. Recently I got a very nice response from Katherine Bouton about my experiences returning to performing music again. We originally met via Facebook as readers of each other’s posts and blog articles. I greatly respect her writing and admire her work in the hearing loss community, so I decided to reach out to her. One thing led to another, which eventually led to the following interview. I know you’ll enjoy and learn from what she has to say.
Stu: Can you talk about the evolution of your own hearing loss?
Katherine: Other than age related, there is no hearing loss in my family. I lost the hearing in my left ear when I was 30. There was no indication that anything was wrong until one morning when I couldn’t hear on the telephone and later that day developed dizziness and tinnitus. An MRI and other tests all came up negative and it was diagnosed as Idiopathic sensorineural hearing loss. During my 30’s my hearing worsened and affected my right ear. By 50 I was profoundly deaf in the left ear and had a moderate hearing loss in my right ear. In 2002, I got hearing aids and they helped a lot, but my hearing loss continued to progress, often after periods of prolonged stress, and by 2008, I had lost much of the hearing in my right ear. After a series of last ditch measures, I got a cochlear implant in September of 2009.
Stu: What is the quality of your “hearing experience” now?
Katherine: It varies according to the environment and who is speaking. It’s also dependent on my emotional state. During the years immediately following the implant, I lost my job, and five members of my immediate family died – one after the other. I was the oldest child and the point person for all of them and it was stressful and debilitating. It took therapy and medication to get me back to normal (sort of). Now, as long as disasters aren’t occurring, I hear well enough. I’m a good lip reader, and I’m also pretty brazen about asking people to repeat themselves, even asking a whole dinner table full of people to stop and tell me what they’re talking about.
Stu: What hearing technology do you use?
Katherine: I have a Phonak Naida hearing aid and an Advanced Bionics Naida cochlear implant. I use my ComPilot for listening to music and books on my smart phone and I love it. I also have a Roger Pen. I use captions on TV. I’m always delighted to find myself in a venue with a hearing loop.
Stu: Are you engaged in any aural rehabilitation?
Katherine: I’ve done individual oral rehab several times, first at the Center for Hearing and Communication in New York, then two 12-week sessions at New York Eye and Ear Infirmary. This past summer I started working with Geoff Plant at the Hearing Rehabilitation Foundation in Somerville, MA. It’s a long way to travel, but I really enjoy the sessions and I think I’m hearing better. I know I’m listening better. I’ve done some online rehab – I like “Read My Quips” – but I rarely seem to have time for that. I have LACE and plan to blog about rehab once I give LACE a try.
Stu: You held high profile jobs at the New York Times. Talk about how that changed due to your hearing loss.
Katherine: Eventually, I simply could not do the job I had and loved. I told people about my hearing loss, all my bosses knew about it, as did my close colleagues. But I didn’t make a big deal about it and they often seemed to forget. My job included daily meetings with 15 or 20 different editors all standing around a central area of our part of the office, going over the expected news of the day. I couldn’t hear what other people said and I can’t think of any accommodation that would have helped with that meeting. My job also included going to the “Page 1 meetings,” where the next day’s front page is discussed with 15 to 20 people around a big table. I tried to avoid that meeting. My last year or so at the Times I was the Theater Editor — going to theater 4-5 times a week. I couldn’t hear the plays so I got around it by all sorts of strategies like reading the plays in advance, but again, there was no real accommodation possible except for all theaters to have closed or open captions at all performances. I also had to do a lot of telephone work. At the time, I didn’t have a captioned phone (I do now) but the captioning is too slow for it to have been effective in that kind of environment. I kept my hearing issues quiet because I could see that accommodating it would be impossible (except by changing jobs) and I felt like I was managing well enough to continue. I still think I was — but it took a huge amount of effort and strategizing. The job was exhausting and the effort to hear made it even more so. In fact when I left, the job was divided up between two people. I supervised about a dozen critics and reporters. They all knew I had hearing loss, though not the extent of it. They made a point of talking to me in person face to face, or by email. I think they thought I was doing fine. So it’s really complicated. The Times offered to find me a more hearing-friendly position, but I wanted to keep the job I had and I really fought for it. But now, six years later, I can see that I didn’t have any choice.
Stu: Why did you write these books?
Katherine: Partly because I couldn’t figure out what else to do with my life and it was therapy for me — I had to confront the full extent of my hearing loss. I had worked for 22 years at the Times in really interesting, high profile jobs. When I left the paper, I felt like I’d lost my identity (not uncommon for Times people.) I didn’t know what to do with myself. And I loved working. I had been a freelance magazine writer in my 30’s and had continued to write on and off when I had time as a staff person at the Times, so I thought of trying to write. Hearing loss was a natural subject to turn to, and eventually I realized that a memoir was the best way to approach it. I thought my experiences might be helpful to others. The few books I had read were by people who had had more positive experiences than I did – Arlene Romoff, Michael Chorost, e.g. I suspected there were others like me who were struggling, and of course there were. Three years later I continue to get emails from people saying they’ve just read my book and how much it meant to them to see that others struggle too.
Stu: What do you want people to take away from your books?
Katherine: That they are not alone, that they don’t have to be embarrassed by their hearing loss, that they don’t have be ashamed for not hearing as well as they’d hoped to when they got hearing aids or cochlear implants. Also that it’s great help to share their experiences with others like them – join support groups like the Hearing Loss Association of America (HLAA) and the Association of Late Deafened Adults, (ALDA) read blogs and comment. I want professionals to develop a greater awareness of how devastating hearing loss can be and how unsatisfactory hearing corrections can sometimes be.
Stu: You write about many hearing issues but what do you feel are the two or three most critical ones right now.
Katherine: Social and personal awareness of hearing loss, ease and access to hearing help, cheaper and better hearing aids and other hearing devices. And creating accommodations that work.
Stu: You say that hearing loss is an “invisible disability.” Invisible to whom?
Katherine: Invisible to everyone, sometimes even the person who has the loss. With age or noise-induced hearing loss the onset is gradual and it can be hard for individuals to recognize that they are not hearing as well as they used to. It’s crucial that we start including hearing screenings in annual physicals -especially for the elderly. People will listen to their doctors, if not to spouses or friends. It’s also invisible to the health care community. Doctors need to realize that hearing loss is very common and that untreated hearing loss can have serious consequences. It’s amazing to me that even geriatricians ignore hearing loss. Most emergency rooms don’t even ask about hearing loss and they certainly don’t provide any hearing help. This past year the CDC failed to include hearing loss in their survey of disabilities. And hearing loss is definitely – and willfully – invisible to insurance companies. As for corporate and public officials, just one example: airports. Why do gate attendants continue to give information about boarding, delays and so on over PA systems? How expensive could it possibly be to have LED displays with that information? The New York City subway system recently introduced electronic messaging on the trains and platforms -not for the hard of hearing but for everybody. And everybody benefits. Next, the buses.
Stu: The words “no known etiology,” “idiopathic,” continue to float around hearing loss diagnoses, from sensorineural hearing loss, to tinnitus, to Menieres Disease and other afflictions. With all our research and medical knowledge why are these conditions still out of reach?
Katherine: I have a more positive outlook on these things than you might. I think there’s a huge amount of research going on targeting better diagnosis and a cure. Researchers at the University of Washington, Stanford and elsewhere seem on the verge of being able to provide gene therapy for those with genetic hearing loss and have made good progress on hair cell regeneration. I believe someone at Hopkins has developed a way to diagnose Meniere’s (previously diagnosable only in an autopsy). The Hearing Health Foundation has developed a consortium of researchers from many different universities who are sharing their research results. I think it’s called the Hearing Research Project. The military is very active in research for prevention and have developed some very sophisticated ear plugs that shut down when a damaging noise occurs.
Stu: Many of us know people whose hearing loss was caused by ototoxic drugs. And yet patients are not always told by their doctor’s about this side effect of many medications, even over the counter ones.
Katherine: Some of them are essential. The cancer drugs, for instance. Cisplatin and carboplatin. If your doctors know you have a family history or tendency to hearing loss, they might be able to give another drug. But if Cisplatin is the one that’s going to save your life, I think most people would risk the hearing loss. Same with antibiotics and over-the counter drugs. I think it’s up to individuals not to overuse these drugs; not to take 20 ibuprofen a day, for example. Over-prescription of antibiotics is dangerous on many levels, including hearing loss. Most hearing loss that comes from ototoxic drugs can be reversed if you stop taking the drug. Neil Bauman’s books are very helpful in identifying ototoxic drugs.
Stu: How do feel about the state of current hearing technology?
Katherine: Correcting mild to moderate hearing loss is easy, and hearing aids really work. Correcting severe hearing loss is much harder. The auditory system is very complicated. I think research on cochlear implants and hearing aids has vastly improved both. There’s still a long way to go but I don’t think it’s out of lack of interest. I think it’s just a huge technological challenge.
Stu: We live on a noisy planet, many of us live in noisy cities and noise is ubiquitous in many indoor places – restaurants, retail stores, malls, health clubs, for example. How do we address this issue comprehensively?
Katherine: We need to raise awareness about the dangers of noise – to promote abatement, but also to make people more personally responsible for noise. People who go to football games should wear earplugs. You mentioned you have friend who teaches tap and it’s very loud. She should wear earplugs too. Musicians’ earplugs are great – they let in what you need to hear and not the rest. Workplace noise is regulated by NIOSH and OSHA although enforcement can be difficult. Even so, I think recreational noise is far more damaging.
Stu: The stigma attached to hearing loss has been with us for millennia. You write that the stigma is ironically often reinforced by the shrinking size and the high cost of hearing aids.
Katherine: Stigma and high cost are intricately entwined. As long as hearing aids cost as much as they do, fewer people will wear them. The people who WILL wear them will be those with the most serious hearing loss, and they may not work perfectly for those people, which will lead to the impression that hearing aids don’t work. We need to bring the cost down, make Personal Sound Amplifiers legal and regulated as hearing devices, and provide insurance coverage for hearing aids. When the prices come down, insurers will cover. When insurers cover, more people will use them. When more people use them, they will come to seem as unremarkable as glasses.
Stu: The current delay between hearing loss onset and the purchase of a first hearing aid is 7 years.
Katherine: The delay, which I think is down to 4 years from 7, is part of the same issue. They cost too much, they’re not covered by insurance, they seem like something only old people use, they don’t seem effective because only the really hard of hearing are open about wearing them. The moderately HOH may wear hearing aids, but they don’t talk about it.
Stu: Hearing loss has many side effects short and long term and most troubling to many of us is the isolation, depression, and other long term health issues.
Katherine: This is why I advocate for HLAA. Joining your local chapter of HLAA is the best way you can find others like you. It doesn’t mean you give up your hearing friends or your hearing life, but you meet new friends. And because many HLAA meetings have Communication Access Real Time (CART) capability, you can actually comfortably “hear” in these meetings. I’ve learned a huge amount in casual conversation with my HLAA friends, and even more from the structured programs we sponsor. That said, in contrast to the very culturally vibrant deaf community, outside of HLAA (and maybe ALDA) there isn’t a hearing-loss community at all, much less a vibrant one. I think active HLAA members do have a vibrant community, but it’s hard to get people interested.
Stu: Hearing loss is tiring and the fatigue factor is another challenge.
Katherine: No doubt about it. Take breaks, take naps, go to bed early. The association with dementia and other cognitive issues is beginning to get more attention but it may not be the best way to persuade people to get hearing aids.
Stu: What are we seeing with hearing loss in the developing world?
Katherine: The worldwide statistics on hearing loss are really shocking. In developing countries the problem is not only noise but a lack of adequate medical coverage. Lack of vaccines to prevent the diseases that cause hearing loss – measles, mumps, meningitis – and lack of treatment for conditions like chronic otitis media. There are some foundations that distribute hearing aids in the developing world, but in many places they are unavailable. Even if you manage to get a hearing aid, replacement batteries are unavailable, audiologists are unavailable. Someone has developed a solar-powered hearing aid – bravo. But I don’t think it’s made much of a dent yet.
Stu: Back to you and your life. How has your hearing loss changed you as a person, as a professional, wife, mother, friend and social being?
Katherine: I’ve been very lucky. I had an alternate career that not only could I go back to but wanted to go back to – as a writer. Hearing loss gave me the shove out of the office and back into the writing world. But many are not so lucky. Alternate careers are not waiting in the wings. For those people, I say get involved in advocacy, again, join HLAA, find others like you, work with them to advocate for better devices, lower costs and better access.
Stu: Are there any positives that you take from your hearing loss? I have by necessity become more patient with myself, with life and with the often unaccommodating hearing world. Any insights from your experience?
Katherine: I’ve learned to be much more tolerant of people with disabilities, especially hidden disabilities. I’ve learned about the obstacles the world puts up not only for people with hearing loss but other invisible disabilities like mental illness, epilepsy, back problems, eating disorders, alcohol and drug abuse. I’m also grateful that treatment for hearing loss exists – and that it’s very effective for the most part. I love my hearing aid and my cochlear implant. I love my ComPilot. I love captions on my TV. I love the new devices that keep coming along, the new smart phone apps. I also love that my life has taken new meaning and purpose because of hearing loss – advocacy and education about hearing loss are incredibly important to me, and I’m really glad I’m in a position to help others.
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