My Story
Back in Business, After a Long Break
Re-Booting Hearing Mojo
I’ve been letting people know I’m re-booting my Hearing Mojo hearing-loss blog after having taken a long break from posting new entries. In the past year I’ve let this blog lie dormant as I’ve gone completely “mainstream” with my communications consulting business, Aquarius Advisers. We have been successful, with a number of happy high-technology clients, but it’s been an education in coping with hearing loss in the business world. During my blogging hiatus, I’ve stayed current with the new developments in the world of hearing loss and hearing aids, including time spent consulting with America Hears, Inc., the leading online manufacturer and marketer of premium digital hearing aids. However, I’ve sorely missed writing about this industry and all the issues involved with it, so I intend to start doing so again. I’m still managing a transition to a new blogging platform (the new look and feel are enabled by the Wordpress open-source content management system, as opposed to the Moveable Type platform I used in the past). So it might take me a while to get the new platform exposed to the search engines. But I’m starting to write again as of now. A lot has happened in my absence, and I intend to catch people up with all I’ve seen and heard, starting with my visit earlier this month to the American Academy of Audiology (AAA) AudiologyNow 2009 conference.
Can “Musicophilia” by Oliver Sacks Explain Why I’m Hearing Better?
I just picked up Musicophilia: Tales of Music and the Brain by Oliver Sacks, and it is a revelation for anyone with hearing loss and distortion of sounds that comes with it. Sacks is a physician and neurological specialist who has written extensively on previously unexplained phenomena with the brain.
Musicophilia by Oliver Sachs addresses hearing loss.
Musicophilia describes and explains both musical hallucinations and amusia, the inability to discern tone or timbre, which makes music impossible to “hear,” listen to or enjoy. I never knew amusia had a name, only that when I lost most of my hearing five years ago I also lost my ability to hear music. While I’ve gotten better at coping with normal conversation, my amusia has been and continues to be the most devastating irreversible loss I’ve suffered. Sacks provides a case history that makes my problems with music seem small and also offers some hope. It’s about a professional musician, and composer, Jacob, who gradually loses his ability to process musical sounds correctly. But, like Beethoven, he is able to continue working by using the musical ability that his brain retains. Even better, he has “trained” his brain to correct the problem so that at times he is able to hear music properly again.
I’ve experienced something similar, in that when I concentrate really hard I can sometime properly discern a single melody played by a single instrument; often the tone leaps from one octave to another in mid-stream as my brain chooses an octave that my ears can process more or less properly, but I still can recognize the tune. I’d heard of something called “recruitment,” where the brain compensates for dead hearing cells by having adjacent cells tuned for higher or lower frequencies pick up and process the sound. So I can hear musical sounds, but they are a discordant mess because my ears hear them at all the wrong tones. But sometimes, seemingly through an effort of will or extreme concentration, I can hear the correct tones. Sacks explains this by identifying a process where the brain actually re-tunes the hearing cells to pick up and process notes at the proper frequencies:
What might seem a preposterous notion has gained support from recent work demonstrating that there are massive efferent connections (the olivocochlear bundles) going from the brain to the cochlea and thence to the outer hair cells. The outer hair cells serve, among other things, to calibrate or “tune” the inner hair cells, and they have an exclusively efferent nerve supply; they do not transmit nerve impulses to the brain, they get orders from the brain. Thus one has to see the brain and ear as forming a single functioning system, a two-way system, with the ability not only to modify the representation of sounds in the cortex but to modulate the output of the cochlea itself. The power of attention – to pick out a tiny but significant sound in our environment, to home in on a single soft voice in the ambient din of a crowded restaurant – is very remarkable and seems to depend on this ability to modulate cochlear function….
If this is true it may help explain why I’ve felt over the past several years that my hearing has improved, especially my comprehension of conversation. If the brain can command what’s left of the hearing organism to actively assimilate and discern specific kinds of musical sounds, perhaps it can also train the ears to “hear” spoken conversation in ways enabling the brain to understand speech more easily. Sacks describes how intensive work by Jacob the composer resulted in lessening of his amusia, as he worked with music and musicians all day long and actively concentrated on adjusting his tonal perceptions. I work just as hard as Jacob, but in conversational settings, because my work as a communications and media consultant requires I be the best possible listener. I thought for the longest time I was just getting better at speech reading and understanding body language and all the visual cues that help one understand what someone is trying to communicate. But perhaps my brain is also learning how to “order” my cochlea and hearing hair cells to interpret the sounds they do pick up in ways that enable my brain to comprehend speech and understand conversation better than I could when I first went deaf.
This may also hint at why a product like the Neurotone LACE speech-comprehension therapy system actually works. I have gotten through four of the 20 LACE lessons and will have a report on the results in a future post.
Joining The Hearing Mainstream, Or, How I Got My Mojo Back (Hearing Mojo, That Is)
It’s been a long while since I last posted. That’s because I have spent the last six months ramping my marketing and communications consulting business, Aquarius Advisers, to the next level. I’ve now got two partners and we’ve taken some nice space in a nineteenth-century manufacturing building in the Kendall Square area in Cambridge, Mass. Kendall Square is next to MIT and a hotbed of high technology and biotechnology research. We have several technology start-up clients as well as some major corporate clients. In short, I’ve gone “mainstream,” meaning I try to go about my regular business activities without letting my hearing impediment get in the way. It’s been an exciting challenge, and it’s given me plenty to write about for Hearing Mojo in the coming weeks and months.
On the one hand, I can’t believe how much better I can cope now than I could in the first year or two after my sudden hearing loss in 2002. I’ve gotten more sophisticated about assistive technologies as well. At the same time, I’m getting a much deeper appreciation of the sheer effort it takes to get through a solid week of meetings, phone calls and work in the office. Boy, do I get exhausted sometimes.
But during this hiatus the number of visitors coming to Hearing Mojo has been consistent at about 1,000 a week. This is pretty good traffic and shows the interest in hearing loss and coping strategies is as strong as ever. So I intend to start posting more often about my experiences as I get busier in the mainstream, with my usual focus on coping strategies as well as occasional in-depth looks at products and technologies that are opening the world back up for people with severe hearing loss. I also hope to pick up on the action linking more often to news in the hearing industry where the major manufacturers have been busy with product launches, mergers and acquisitions, and where the smaller companies have been driving competition and innovation. Stay tuned.
Did Someone Say Those Noises In My Head Are Real? Or Am I Hearing Things Again?
A few weeks ago I posted an item about the noises I constantly hear in my head. These aren’t the usual hissing or ringing noises commonly associated with tinnitus. I’m talking about distinct sounds such as dump trucks and payloaders working at a hallucinatory construction site outside my window, a chain saw whining in the distance, several orchestral arrangements of “God Bless America” that played in my head without a break for two full days…. the list of real sounds heard distinctly goes on.
The effect is not painful or even unpleasant, but it does make you question your sanity at times — out of embarrassment I buried the “God Bless America” story in the seventh or eighth paragraph of my post. But it turns out Dr. Neil Bauman has done an entire book on the subject called Phantom Voices: Ethereal Music & Other Spooky Sounds. Dr. Bauman, who is hearing-impaired, has made a career studying, writing about and speaking on sources of hearing loss and ways of coping with it. He’s an interesting guy, as his doctoral degrees aren’t in medicine or audiology but in astronomy and theology. But like many other lone voices in the wilderness, he has spoken up on many issues important to hearing-impaired people long before the supposed “experts” have dared to venture their opinions.
Among other things, he has written extensively on otoxic drugs, herbs and medicines that can cause permanent damage to your hearing, which medical professionals still are often unaware of. He was also using and writing about assistive listening devices when the rest of us were still unaware of any assistance available beyond our clunky old hearing aids. And he started writing about the possibility of gene therapies for regeneration of the inner-ear hairs responsible for hearing when scientists first discovered in the 1980s that birds are naturally capable of regenerating their hearing hair cells.
Now he’s on to what he calls “Musical Ear Syndrome.” You’ll get an indication of how far ahead he is on this subject if you Google those words — after the two lead entries on his book, you’ll find a reference to an article in the Journal of Nervous and Mental Disease on “musical hallusinosis,” which I’m sure would try to convince me I’m crazy after all. But beyond those items, there seems to very little scientific research on this effect. Hallucinations or not, I know I’m not crazy and that these noises are real. The more lists and chat groups I join, the more people I find who have experienced similar noises in their heads. (Some even hear voices — though apparently not the kinds of voices schizophrenics hear that command them to do things.) So I’m glad Dr. Bauman’s on the case. I’m going to order Phantom Voices right now, and I’ll let you know what I think. In the meantime, he has written a brief but clear introduction to the subject in a recent issue of Hearing Health magazine, the authoritative publication of the Deafness Research Foundation. Check it out.
Okay, It’s Time To Get A Portable Bed-Shaker. Any Recommendations?
When my family toured Washington, D.C., in 1964, we stayed in a Holiday Inn where one of the beds was equipped with something called “Magic Fingers.” My brother and I scraped together two quarters and shoved them into the sliding arm that dropped the coins into a metal box above the headboard, and the entire bed started vibrating. At the time it seemed like one of the silliest things I’d ever seen, and the memory of it has only gotten more ridiculous with time. That’s probably why I’ve had an aversion to the various bed shakers that I’ve heard are effective alarms for hearing-impaired people. Last night I took a quick overnight trip to Connecticut to visit a prospective client and had to get up early this morning. A front-desk wake-up call doesn’t work for me because I can’t hear the ringer without my hearing aids. So my drill is to set the radio alarm clock with the volume turned up as loud as it will go and drag it onto the bed next to my head. Then if I make sure to sleep on my bad ear, my good ear hears the racket and I wake up when the radio starts blaring. But if I end up sleeping on my good ear, I don’t hear it (though I pity the poor person in the room next door). The result is I end up getting a lousy night’s sleep because I wake up every 15 minutes worried that I’ve turned onto the good ear. So I guess it’s time to break down my resistance to the portable vibrating bed shakers that I know are out there. But right now I’m too tired to go on the web and wade through a hundred different possibilities. Does anyone have a suggestion?
Excuse Me, I Have To Fall Down Now
Right after college, I had three roommates in their first year of medical school. Once a week, one of them would run up from the mailbox shouting, “MMWR is here! MMWR is here!” Morbidity and Mortality Weekly Report, the newsletter from the U.S. Centers for Disease Control (CDC), chronicles every known malady afflicting the populace, providing graphic details of the latest horrific diseases and extensive weekly documentation of Who and How Many are Dying from What and Why. My doctor-to-be roommates pored over it. But I never saw the appeal until many years later, when as a sufferer of Meniere’s Disease I started reading with ghoulish fascination every issue of On the Level, the quarterly newsletter of the Vestibular Disorders Association (VEDA). This week’s mail brought the Spring 2005 issue, which carries three full pages of the most graphic descriptions I’ve read of the vertigo problems that accompany Meniere’s: “In the early acute stages, people may be consumed with rock-bottom physical and medical issues, struggling just to get under control things like balance, nausea, vomiting, and headaches….It doesn’t go on like that forever; sooner or later, the basic physical symptoms, with trial and error and ongoing treatment, will be brought under at least adequate control. Then you are in for the longer haul, dealing with the cognitive, memory and attention problems, the impact on your life, the limitations on activity you may have….
The report goes on and on with an extensive list of physical and neurospychological problems causing all kinds of mayhem in people’s lives — lost jobs, broken marriages, alienated children, inability ever to play golf again — but I’ll let you discover them for yourself should you choose to support the work of VEDA by taking out a subscription. The organization in fact is an excellent clearinghouse for information and support available to people with all kinds of inner-ear and other vestibular disorders, many of them causing or accompanying hearing loss. If you’ve never suffered an acute vertigo attack, thank your lucky stars. The world starts spinning, down becomes up, and an attack can be so immediate and violent that you find yourself on the ground before you know what hit you. Then you throw up.
VEDA and other organizations gave me tremendous reassurance it would be possible to cope in spite of the mysterious problems that beset me. Their work is invaluable in helping people who need it most. So if you’ve been diagnosed with Meniere’s or have suffered some of the symptoms, make a contribution and check out On the Level. And don’t be put off by the academic prose — with practice you will become savvy to the lingo. At the very least, it will quickly become clear that no matter how bad off you may be, there’s always someone in far worse shape who is coping better than you are. Remember the old saying, “I cried because I had no shoes until I met a child who had no feet.”
As for MMWR, now that it’s on the web I occasionally dip back in for old times’ sake. Check out this week’s issue. I recommend the excellent retrospectives on the progress of two parasites that have caused severe gastrointestinal illness in the U.S., Cryptosporidiosis (1999-2002) and Giardiasis (1998-2002). Happy reading!!
So How Does “The World’s Greatest Communicator” Communicate When He Can’t Even Hear?
On paper, at least, I am one of the world’s great communicators. I was CEO of one of the world’s largest public relations firms. Before that I was co-founder of one of the fastest growing high-tech marketing communications firms in Silicon Valley. And before that I was a successful journalist. I haven’t counseled kings, but I have whispered in the ears of some of the world’s most important business executives. When I lost most of my hearing, being the world’s greatest communicator got a lot more complicated. What I’ve discovered, though, is that communication involves a lot more than using your ears, and that you can still be one of the world’s greatest listeners even when you can’t hear.
I learned early on that the key to being a successful consultant is to shut up and listen. People are so accustomed to not being listened to, that if you simply let them talk, and if you take an honest and careful interest in everything they say, they will reveal things about themselves they’ve never exposed before. And they won’t even realize it. Once you get them talking, you can learn a person’s life story and nearly everything you need to know about what makes them tick. But the strangest thing is they often fail to listen even to themselves, so that after they’re done they have no recollection of what they’ve just told you.
I can’t tell you the number of times I’ve simply played back to new clients what I’ve just finished hearing them say about their most personal fears, hopes and dreams for themselves, their families, their new products or their companies, and been told I’m an absolute genius, a mind reader who seems to know more about them than they do about themselves. They tell me I must already be an expert in their field because I know so much about where they are going and what they are doing without even having been briefed about their strategy and plans — only minutes after they’ve shared all those plans with me, down to the smallest detail. There is truly amazing power in good listening skills.
Unfortunately, severe hearing loss takes away that advantage. It’s impossible to sit back and listen intently, vacuuming up every seemingly insignificant little detail and putting it to very good use later. With speech reading you can get a very good approximation of the key points of a conversation, but you have to come back later to fill in the details of what you missed: the subsidiary clauses, casual asides, jokes, analogies or contextual references that are critical for complete understanding but hard to get the first time through without hearing the exact the words. Getting through an initial business conversation is like trying to read War & Peace at a single sitting. I’m sure with enough Evelyn Wood speed-reading training you can get the gist of Tolstoy’s great novel, and if you skim enough of the high points you can hold up well in a dinner-party conversation, but you will by necessity have to skip 80 percent of the actual words in the book. Sometimes speech reading is even like skipping to the last chapter of a mystery to see who done it in advance — by the end of the conversation you finally figure out what was going on, but you have no clear idea of how the participants got there.
So my little trick of playing the genius on a first business meeting doesn’t work any more. But I can be quite effective anyway by getting the same information in different ways. First, I do ten times more preparation than ever before. I do voluminous research on the client’s busines problem, industry and market. And I make it my business to know that person’s life story before I go in, so when I’m hearing it in the initial conversation I have the context and basic high points of the client’s personal story. (Look at my recent posting, A Night at the Theater, on going to a play having read the script beforehand — speech reading is a lot easier if you know the plot and what’s coming in the next scene). Thank you, Google.
Second, I take in the visual details in a way I never did before. How the person is dressed, what chatchkes he or she has strewn about the office, whether the desk is neat (a buttoned up client who will be easy to work with, or an anal control freak?), or sloppy (a casual client who will be easy to work with, or a disorganized nightmare?), framed awards or diplomas on the wall, and personal pictures all tell a tremendous amount about the person and the business situation. They also provide useful clues that can provide hooks back into the conversation when you lose the thread.
Looking at the client’s bookshelf also tells you “volumes” about that person’s interests and experience. Especially if there are books you’ve read in common, which gives you a chance to steer the conversation to an area where you know the context and are more likely to understand his or her perspective on it. Informal get-to-know-you conversations are extremely revealing but are among the most difficult social transactions for someone with a severe hearing impairment, because all too often the repetitions required just to get going kill the spontenaeity of the moment and end the discussion before it gets started. But when you start a “spontaneous” conversation about a topic you both are familiar with, where you already have a context and know the points of similarity in your experiences, you have a much better chance of successfully negotiating this opening social ritual.
Having several people in the room is also very useful, because body language comes into play much more prominently. I’ve sat in group meetings around a conference table with people who initially were complete strangers to me, but who at the end of two hours I know quite well, even without having understood much of what people at the far end of the table said. I know who’s mad at whom, which side of the issue different players are on, who is the funny one who provides social lubricant, who is the organized one who moves the meeting along, who is skeptical of the idea of hiring a consultant in the first place (take a note to set up a one-on-one later), and who through vigorous head-nodding is ready to sign a contract today. Sometimes this information is more important than the details of the problem at hand, which can often be established quickly through advance research. Having a grip on these dynamics can mean the difference between being effective or ineffective as a consultant and ultimately between success or failure. But none these things are obtained verbally.
So while I still find it very difficult to hear, I still manage to be one of the world’s greatest communicators. Just ask me. Then, listen up!
A Night at the Theater
Usually a trip to the theater is frustrating because getting any of the dialogue is such a challenge. Even the headphones available in larger theaters most often don’t do the job for me. But last weekend I went to see my friend Steve Cooper play a leading role in Blinders, a political satire put on by the Out of the Blue Theater Company at the Boston Playwrights’ Theater. The company is staffed by both veteran and up-and-coming actors in a small, intimate theater next to the campus of Boston University. And this time, I had two things going for me that made going to the theater enjoyable again.
First, Steve slipped me a copy of the manuscript to read before I went to the play. Second, when my wife Barbara made the reservations, she asked the New York-based telephone ticket agent to make a note that there would be a hearing-impaired person in the party in hopes of getting a seat close to the front. When we got to the theater, they escorted us to front-row seats marked “Reserved-Copithorne.” Wow. By and large I’ve found people very helpful when I speak up and let them know I need an accommodation, but when they go above and beyond the call of duty, it sure feels good. Then when the actors came on the stage, speech-reading was much easier because the manuscript was fresh in my mind. What a difference from the usual theater experience!
The only problem of the evening came when Barbara and the kids pressured me for details of the plot in advance. I held them off except when Barbara got concerned that Steve might be one of the characters who gets killed in the end, in which case she said she would leave at intermission. I reassured her he wasn’t going to get killed. (I didn’t tell her his actual fate, which is nearly as bad: after he helps his girlfriend get elected President, she dumps him and exiles him to Uzbekistan).
