I have known for years that a stapedectomy was indicated for my conductive bone hearing loss, yet I had shied away from even discussing this with doctors, other than one time with Doctor Downey perhaps 10 years ago. You might think that I was afraid of the downside, which is total loss of hearing in the affected ear if the surgery fails completely. Or that I am afraid of pain, or hospitals, or doctors, which many do indeed fear.
Nope. I am pathologically afraid of anaesthesia. When we were kids, my cousin used to tell everyone that he was “allergic” to spinach, conjuring visions of him writhing on the floor in anaphylactic shock if he came in contact with the leaf (and inspiring in me periodic thoughts of rubbing spinach on his back when he was not looking, just to see what would happen). All grown up, I have borrowed this strategy when talking to doctors, telling them that I am “allergic” to anaesthesia. I find that those simple words act like a magical talisman, making sure that they don’t suggest surgery to me unless absolutely necessary.
My fear is well grounded. Back when I was seven, I had “lazy eye” syndrome where the ocular muscles of my eyes were not working properly. My left eye would dive down and in towards my nose, while my right eye would roll up and towards the top of my right ear. It made for a lot of fun for kids in my schools. I endured many hours of torturous eye exercises–following the tip of a pencil as I moved it towards and then away from my nose, rolling my eyes in circles, focusing on objects at different distances. But the only real solution was surgery, which at that time was pretty radical. My eye doctor, Doctor Roth, brought me and my parents to a meeting of eye surgeons for a series of opinions. One after another they shined lights in my eyes and made me follow their fingers wagging in the air, and I listened sedately as they made comments like, “I wouldn’t touch that one,” and “He will be blind in the left eye before he is a teenager.” My parents, listening in the back of the room, were not happy to be hearing all of this, but I was too young to really understand what it all meant.
Still, Doctor Roth persisted, and after consultation with his mentor in New York City, my parents decided to let him do what was then pretty radical surgery–cutting the ocular muscle and then letting it knit back together, presumably stronger and tauter than before. Or I could wind up blind in that eye if it failed. We rolled the dice and put our faith in Doctor Roth.
I woke up in the recovery room of Hartford Hospital and felt the inside of my head spinning within my skull. Total vertigo. I had no sense of up or down. And then I threw up. Huge, heaving projectile vomiting all over myself, the floor, the bed. They gave me an anti-nausea shot and I threw up right through it. As they wheeled me down the hall to my room the fluorescent lights flashing above started spinning and warping and I heaved again, dry and painful. Somewhere in my mind I was afraid I would rip that surgically-attached muscle with all the strain. But I could not stop vomiting.
The little boy in the bed next to me was named Brian, and he lived in the subsidized housing complex a few blocks away from me in Hartford–squat, two story brick buildings with no adornment sitting forlornly on Granby Street across from an elementary school and hard against an industrial park. Brian had a massive brain tumor and he spent most of his time moaning and passing in and out of consciousness. But when he was coherent we talked, and I tried to play with him. I felt a connection with him, wanted to perhaps play with him when we got home, but my mom found out later that he passed away soon after I left the hospital. I still feel a sense of loss when I drive by that old housing project on Granby Street.
And I kept on vomiting like crazy. The world would just not stop spinning and gyrating and heaving and bucking, and my stomach followed suit. Finally, my mother looked at me and said it was time to go home. I was petrified–how would I make it in her car? But mom, as always, had a firm answer for that one. She told me if I threw up in her car she would rub my nose in it. Not very subtle, but it worked. I clamped my mouth down hard and used my mind to override the nausea that was rising in my throat the whole way home. Eventually the anaesthesia wore off and my stomach returned to normal.
Years later, when I was in my late 30's, I had sinus surgery in New Jersey, courtesy of Doctor Robert Fieldman (Dr Downey’s associate). Dr. Fieldman is one of the great ENT doctors in this area, renowned not only for his surgical touch, but also for his friendly and straightforward manner. I loved cracking him up with funny stories and sardonic comments about my sinus infections. He is one of those guys who you just love to watch laughing.
In this surgery he ran small cutting tools up through a flap of skin inside my nose then into my skull, opening up scar tissue along my maxillary sinuses. Pretty routine stuff these days. I told the anaesthesiologist that I was very sensitive to any drugs, and had bad reactions in the past. Please use a low dose, I said, and he said he would also use drugs to curb nausea. I was reassured, especially when Dr. Fieldman reviewed the dosage and said it looked right.
Later, I felt someone shaking my shoulder and calling my name. “Mark, Mark, you have to wake up. Mark, we can’t send you out of recovery until you wake up.” I opened my eyes and saw a halo of light, with a masked Dr. Fieldman in the middle of it looking down at me. He was still wearing his surgical cap and his glasses, but I knew it was him. Suddenly, his eyes got wide, and he backed off saying, “Holy shit!”. I was wondering if a large snake had crawled out of my sinuses–his reaction was that fast. Then I noticed I was projectile vomiting all over the place–blood and bile and whatever else was in there. Dr. Fieldman beat a hasty retreat, and what was supposed to be outpatient surgery turned into a three day hospital stay until the anaesthesia wore off and I could walk again.
Even when I had a colonoscopy years later, and they put me in “twilight sleep”, I suffered a severe bout of amnesia. To this day when I think back on that time, there are episodic memories interspersed with patches of white light, as if someone had reached into my brain and rubbed out my memories with a huge eraser. The few memories I retain are like film clips that suddenly open on a scene and then close, followed by another one that is not connected to the prior one. Fade to white, as opposed to black.
I remember the nurse in the recovery room asking me if I wanted cranberry or orange juice, and then I remember nothing more until I am in my friend Greg’s car heading back to Maplewood. I have no clue of getting dressed, walking out of the screening center, or even seeing Greg in the waiting room. Nothing but white for that stuff. I recall saying to him that I wanted to eat as I had not eaten for a day, and to drop me at the Mapleleaf Diner. Are you sure, he asked? Yes, I insisted. Next thing I remember is the waitress plopping a large plate of pancakes and eggs and toast and bacon in front of me. I have no memory of eating or even paying for it, and even now I wonder if I simply walked out and they were too polite to say anything. Next memory is standing in my kitchen. I must have walked the mile or so home, crossing several busy streets, but I have no picture of that at all. The next day my secretary told me I had called her on my cell phone while I was walking home, and I was totally coherent, giving her all sorts of direction on various issues. And I have not a clue that I did that.
So the thought of having more surgery for a stapedectomy scared the life out of me. I kept avoiding the issue for years, although I always knew it was in my future. That day when Craig Barth mentioned it to me, I knew the time had come.
Doctor Downey is a confident, warm, no-nonsense woman with mirth dancing in her eyes. She was immediately certain that a stapedectomy would work for me, although it would not affect my hearing loss due to nerve damage. Then I told her I was allergic to anaesthesia. And I have sleep apnea. The mirth died out, replaced by concern and calculation. What do you mean, allergic, she asked? I told her about the vomiting, how Dr. Fieldman ran in the recovery room, and the amnesia. Oh, she said, you are not allergic (as in anaphylactic shock)–we will tell the anaesthesiologist and he will give you anti-nausea drugs. Won’t work, I puke right through them, I said. Well, we’ll see. But her normal swagger was now clothed with concern. Still, we scheduled me for outpatient surgery in mid-March.
How scared was I about getting vertigo and losing my memory again? In early March my mother called me while I was on the train going to work. It was 8 AM, and I knew something was terribly wrong for her to be calling me at that hour. My dad had a ruptured aortic aneurism. He had perhaps a few hours to live. I was standing in the vestibule watching the Meadowlands run by in their spring finery, snowy egrets and white swans floating in tidal pools and marsh grasses gently waving in the sun. I broke down in sobs, tears flowing down my face in rivers, and I cried out “No, No, it can’t be”. I feel sorry for the other people who were in that vestibule near me that morning; it could not have been fun to see or hear. And yet, even with this, somewhere in the back of my mind I was as happy as a kid with an excuse to miss a math test. I had to get to Florida right away–I had to cancel my surgery! My mind always pursues multiple simultaneous paths, and this time it locked onto the one bright light in a sea of impending misery and despair.
Perhaps sometime I will write about my dad’s passing, which was in turns magical and inspiring, devastating and humbling. It was a good death, if there can be such a thing. But for now, for this blog, it is enough to say that I ran to work and buttoned up my own affairs so I could fly to Florida, and one of the first calls I made was to Dr. Downey’s office to postpone that surgery–perhaps forever, as far as I was concerned.
Wednesday, July 20, 2011
Saturday, July 16, 2011
Now Where Did I Leave My Ears?
Adult onset hearing loss is a slow, gradual process, sneaking up on you one lost decibel at a time. Many people who have responded to this blog have mentioned how they noticed they were losing their hearing only on reflection, realizing that for some unknown but definite period of time they had been missing words in conversations, laughing a little late as they processed the context of a joke, been frustrated because people were mumbling or just not speaking up!
There comes a day when it suddenly hits you–you have lost a good portion of your hearing. I am not sure that it is denial that keeps you from this reality, although for me that was a major component of not dealing with my hearing loss until it had reached tragi-comic proportions. I think it is more that hearing loss is usually very gradual and stuck in your head. My stepson is partially color blind, but no one knew this for many of his early years–for example, he knew that the upstairs bathroom was the “pink” bathroom from the context of conversations, even though he did not see the color pink.
Still, I remember the first time I truly, unequivocally, irrefutably accepted the fact that I was hearing impaired. Hearing loss is like walking out to get in your car and realizing it has been stolen. You stand on the sidewalk twisting around looking for your car, certain that you have just forgotten where you parked it. Your mind is sifting through dozens of possibilities of where you left it, or perhaps your partner moved it with her spare key, but somewhere in the back of your mind you know that it is gone, stolen, lost for good. When the realization finally sets in, before you call the police and start all the drudgery of filing insurance claims and figuring out a new ride, you feel a sick hole open up in your life in that spot by the curb where your car last stood. This is what the acceptance of hearing loss felt like to me.
And like with that stolen car, I still stand by the sidewalk of my life every so often and wonder if by some stroke of luck or brain lock or premature senility, I really did simply misplace my hearing and I will turn around and it will be right where I left it and the world will sound normal again.
Losing a sense is disorienting, resonating throughout your life. Our senses connect us to the world in rational and non-rational ways, so that the loss of hearing has an emotional impact that goes beyond simply not being able to hear music or conversation the way I used to. As I said in another entry, the first time I put in hearing aids and heard the sound of car tires on a wet road, I spontaneously broke down in tears. The sound resonated in parts of my brain that had remained dormant and stilted for years. Every time I get new hearing aids it takes a week or so for my brain to reorient itself to hearing certain sounds again. Standing in a crowd or on a subway I become dizzy with the kaleidoscope of random sounds flying unmediated into my head, until my brain eventually re-learns to filter.
I have become a greedy consumer of sound, seeking the most powerful hearing aids I could find to recapture at least some of the sound I can remember in distant parts of my mind. I am a sound junky, as my most recent audiologist said when he first tested my hearing. Give me more sound, I cry out when I get new hearing aids. And I don’t want to just hear better, I want to hear better than I used to–I want to listen to mouse heartbeats in the walls and the whisper of satellites as they spin in orbit. The universe owes me this for having stolen my hearing for so long.
But still it is not enough. Hearing aids are a hollow replacement for normal hearing. Basically, hearing aids are tiny microphones and amplifiers in your ears, with all the attendant problems you remember from High School assemblies. They whistle and whine with feedback when something gets too close to them, like your partners lips or a hat or even your hair. Remember the entertainers on variety shows who blow into a microphone to imitate trucks roaring or trains rushing by? That is what hearing aids sound like when you are walking in a stiff wind, or when the car windows are open on the highway (I shudder to think what it would sound like to be in a convertible with the top down).
Hearing aids fit snugly into your ear canal so that the only air that comes in should be through a small air channel running the length of the hearing aid. But if you turn your head or take a large bite from an apple your ear canal may move, and the hearing aid will whistle. Try having that happen to you when you are having lunch with your boss or a client. Hearing aids also magnify most sounds with little discrimination, so that the sound of your own chewing can drown out any conversation at the table. And forget about wearing them to bed at night, unless you want to whistle and tweet every time you roll over on your side.
Another problem with hearing aids is that they cannot get wet. It may not seem like much, but swimming in a pool with your kids becomes a lot less fun when you cannot hear them call to you or laugh. I imagine that folks who have been deaf from birth are not disoriented by their hearing loss, but for me I always feel jumpy when I don’t have my hearing aids in. I am constantly turning my head to see what is going on around me because I don’t have the audible cues I am used to from my environment, even after so many years of hearing loss.
Even with hearing aids, there is much that I miss in most conversations. I have to work very hard to concentrate, to listen, and it is exhausting. Hearing aids amplify noise, but they do not necessarily enhance clarity. Sure, I hear sounds much louder with them in. But I still miss a lot of the overtones and nuances of conversations, and if someone turns away from me or covers their mouth with their hand (which happens more than you realize), or if there are background noises which are being equally amplified, then some of the conversation gets lost and I start interpolating and reading lips, laughing when others laugh even when I have missed the context or punch line. By the end of most days, my mind is tired from straining to distinguish conversations and I have a headache from concentrating so hard–and from being so frustrated at what I am missing.
You would think that sleeping would be one area that being hearing impaired helps. Think of it–you never hear your partner snoring, garbage trucks beeping at 4 AM, or jets flying overhead. Heck, landlords should give me a rent break for living in a house near active train tracks! But even in sleep I find the lack of sound disorienting. The complete and total lack of any sound–night sighs and the house settling, wind in the trees and the air conditioning cycling on–registers in my mind like that stolen car, and a part of my brain keeps reaching out and trying to find the familiar in the velvet, isolating deadness. Deep inside I have an uncomfortable disquiet that something terrible will happen and I will not hear it–a fire alarm, my child being ill, a break in, and this gnaws at my sleep. I remember how my dad would leap up in a panicked startle whenever I shook him to wake him up, to the degree that I would hate to go near him when he was sleeping. Now I understand him all too well.
Many years ago I heard about an operation that could potentially fix my hearing loss, or at least remediate a good portion of it. My ENT, Robert Fieldman, was working on my sinuses at the time and told me about it, referring me to his associate, Laura Downey, who is one of the best ear surgeons in the region. Dr. Downey is a peppy yet blunt and confident woman who told me that my conductive bone hearing loss was a candidate for a stapedectomy, but she also said that there was a 30-40% chance that the operation would not work, and a higher-than-I-wanted chance that I would completely lose hearing in an ear after the surgery. This was about 10 years ago, my hearing loss was bad but not too severe–about 25%–and I decided that the risk was not worth the benefits.
But this year I could tell that my hearing was taking a dramatic turn for the worse. I had put off getting re-tested because I did not have the money saved up for new hearing aids, and so I limped along with an older pair. Then one of them died and I resurrected an even older one, but it was clear that I was having a harder time hearing. My poor wife, Michele, was patient but had to struggle more than ever in talks with me, repeating herself sometimes two and three times before I got what she was saying. At work I had to keep excusing myself while asking colleagues, clients, and bosses to speak up or repeat themselves. More often I simply faked it, like I used to before I first got hearing aids, hoping that my lip reading and contextual reading didn’t fail me too often (although meetings with my Korean clients on one property were almost comical at times).
I finally made an appointment with an audiologist located a few blocks from my house, Craig Barth. I had heard that he was good, and it turned out he is phenomenal (I have subsequently learned that he was on his way to a PhD in hearing when he diverted to being an audiologist, but his research background and deep knowledge of hearing functions is telling). During the hearing test, where I found that I had lost about 80% of my hearing, he casually mentioned that I was a good candidate for a stapedectomy. I laughed and said that the odds of losing my hearing were too high, but he said that the success rates were much higher now. And it turns out he recommended Dr. Downey.
The stars were aligning. I needed to do something to arrest the decline of my hearing, which is getting worse every year. And so I made an appointment with Dr. Downey.
There comes a day when it suddenly hits you–you have lost a good portion of your hearing. I am not sure that it is denial that keeps you from this reality, although for me that was a major component of not dealing with my hearing loss until it had reached tragi-comic proportions. I think it is more that hearing loss is usually very gradual and stuck in your head. My stepson is partially color blind, but no one knew this for many of his early years–for example, he knew that the upstairs bathroom was the “pink” bathroom from the context of conversations, even though he did not see the color pink.
Still, I remember the first time I truly, unequivocally, irrefutably accepted the fact that I was hearing impaired. Hearing loss is like walking out to get in your car and realizing it has been stolen. You stand on the sidewalk twisting around looking for your car, certain that you have just forgotten where you parked it. Your mind is sifting through dozens of possibilities of where you left it, or perhaps your partner moved it with her spare key, but somewhere in the back of your mind you know that it is gone, stolen, lost for good. When the realization finally sets in, before you call the police and start all the drudgery of filing insurance claims and figuring out a new ride, you feel a sick hole open up in your life in that spot by the curb where your car last stood. This is what the acceptance of hearing loss felt like to me.
And like with that stolen car, I still stand by the sidewalk of my life every so often and wonder if by some stroke of luck or brain lock or premature senility, I really did simply misplace my hearing and I will turn around and it will be right where I left it and the world will sound normal again.
Losing a sense is disorienting, resonating throughout your life. Our senses connect us to the world in rational and non-rational ways, so that the loss of hearing has an emotional impact that goes beyond simply not being able to hear music or conversation the way I used to. As I said in another entry, the first time I put in hearing aids and heard the sound of car tires on a wet road, I spontaneously broke down in tears. The sound resonated in parts of my brain that had remained dormant and stilted for years. Every time I get new hearing aids it takes a week or so for my brain to reorient itself to hearing certain sounds again. Standing in a crowd or on a subway I become dizzy with the kaleidoscope of random sounds flying unmediated into my head, until my brain eventually re-learns to filter.
I have become a greedy consumer of sound, seeking the most powerful hearing aids I could find to recapture at least some of the sound I can remember in distant parts of my mind. I am a sound junky, as my most recent audiologist said when he first tested my hearing. Give me more sound, I cry out when I get new hearing aids. And I don’t want to just hear better, I want to hear better than I used to–I want to listen to mouse heartbeats in the walls and the whisper of satellites as they spin in orbit. The universe owes me this for having stolen my hearing for so long.
But still it is not enough. Hearing aids are a hollow replacement for normal hearing. Basically, hearing aids are tiny microphones and amplifiers in your ears, with all the attendant problems you remember from High School assemblies. They whistle and whine with feedback when something gets too close to them, like your partners lips or a hat or even your hair. Remember the entertainers on variety shows who blow into a microphone to imitate trucks roaring or trains rushing by? That is what hearing aids sound like when you are walking in a stiff wind, or when the car windows are open on the highway (I shudder to think what it would sound like to be in a convertible with the top down).
Hearing aids fit snugly into your ear canal so that the only air that comes in should be through a small air channel running the length of the hearing aid. But if you turn your head or take a large bite from an apple your ear canal may move, and the hearing aid will whistle. Try having that happen to you when you are having lunch with your boss or a client. Hearing aids also magnify most sounds with little discrimination, so that the sound of your own chewing can drown out any conversation at the table. And forget about wearing them to bed at night, unless you want to whistle and tweet every time you roll over on your side.
Another problem with hearing aids is that they cannot get wet. It may not seem like much, but swimming in a pool with your kids becomes a lot less fun when you cannot hear them call to you or laugh. I imagine that folks who have been deaf from birth are not disoriented by their hearing loss, but for me I always feel jumpy when I don’t have my hearing aids in. I am constantly turning my head to see what is going on around me because I don’t have the audible cues I am used to from my environment, even after so many years of hearing loss.
Even with hearing aids, there is much that I miss in most conversations. I have to work very hard to concentrate, to listen, and it is exhausting. Hearing aids amplify noise, but they do not necessarily enhance clarity. Sure, I hear sounds much louder with them in. But I still miss a lot of the overtones and nuances of conversations, and if someone turns away from me or covers their mouth with their hand (which happens more than you realize), or if there are background noises which are being equally amplified, then some of the conversation gets lost and I start interpolating and reading lips, laughing when others laugh even when I have missed the context or punch line. By the end of most days, my mind is tired from straining to distinguish conversations and I have a headache from concentrating so hard–and from being so frustrated at what I am missing.
You would think that sleeping would be one area that being hearing impaired helps. Think of it–you never hear your partner snoring, garbage trucks beeping at 4 AM, or jets flying overhead. Heck, landlords should give me a rent break for living in a house near active train tracks! But even in sleep I find the lack of sound disorienting. The complete and total lack of any sound–night sighs and the house settling, wind in the trees and the air conditioning cycling on–registers in my mind like that stolen car, and a part of my brain keeps reaching out and trying to find the familiar in the velvet, isolating deadness. Deep inside I have an uncomfortable disquiet that something terrible will happen and I will not hear it–a fire alarm, my child being ill, a break in, and this gnaws at my sleep. I remember how my dad would leap up in a panicked startle whenever I shook him to wake him up, to the degree that I would hate to go near him when he was sleeping. Now I understand him all too well.
Many years ago I heard about an operation that could potentially fix my hearing loss, or at least remediate a good portion of it. My ENT, Robert Fieldman, was working on my sinuses at the time and told me about it, referring me to his associate, Laura Downey, who is one of the best ear surgeons in the region. Dr. Downey is a peppy yet blunt and confident woman who told me that my conductive bone hearing loss was a candidate for a stapedectomy, but she also said that there was a 30-40% chance that the operation would not work, and a higher-than-I-wanted chance that I would completely lose hearing in an ear after the surgery. This was about 10 years ago, my hearing loss was bad but not too severe–about 25%–and I decided that the risk was not worth the benefits.
But this year I could tell that my hearing was taking a dramatic turn for the worse. I had put off getting re-tested because I did not have the money saved up for new hearing aids, and so I limped along with an older pair. Then one of them died and I resurrected an even older one, but it was clear that I was having a harder time hearing. My poor wife, Michele, was patient but had to struggle more than ever in talks with me, repeating herself sometimes two and three times before I got what she was saying. At work I had to keep excusing myself while asking colleagues, clients, and bosses to speak up or repeat themselves. More often I simply faked it, like I used to before I first got hearing aids, hoping that my lip reading and contextual reading didn’t fail me too often (although meetings with my Korean clients on one property were almost comical at times).
I finally made an appointment with an audiologist located a few blocks from my house, Craig Barth. I had heard that he was good, and it turned out he is phenomenal (I have subsequently learned that he was on his way to a PhD in hearing when he diverted to being an audiologist, but his research background and deep knowledge of hearing functions is telling). During the hearing test, where I found that I had lost about 80% of my hearing, he casually mentioned that I was a good candidate for a stapedectomy. I laughed and said that the odds of losing my hearing were too high, but he said that the success rates were much higher now. And it turns out he recommended Dr. Downey.
The stars were aligning. I needed to do something to arrest the decline of my hearing, which is getting worse every year. And so I made an appointment with Dr. Downey.
Monday, July 4, 2011
The Prosthetic Man
Like everything else in our micro-chip infused world, hearing aids have morphed dramatically over the last decade or so. My father’s hearing aids were relatively large and visible, even when he was in his early 40's and his hearing loss was not severe. It took a large battery and a lot of power to drive the transistors that connected to the amplifiers in his ears. His were hidden in the ear stem of his glasses, which meant he was stuck with ugly black frames with very large ear stems that were specially made for him. And the buds that were plugged into his ears were very large, like plastic mushrooms expanding out of his ear canals and filling in a good portion of his outer ear.
This was my memory of hearing aids, and the thought so depressed me that I delayed going to a dispenser to order a pair until long after the hearing test at the Boston Guild for the Hard of Hearing.
But when I finally went to the hearing aid dispenser in Belmont, Massachusetts who was recommended by the Guild, I found that the whole universe of hearing aids had changed. There were “in-the-canal” hearing aids (ITC) that were so small as to fit discretely into the canal and be almost invisible from the outside. For more power (and to offset more hearing loss) there were half-shells, and full-shells, and behind the ear hearing aids, each one allowing for larger batteries and therefore more power to offset more hearing loss.
(Note that this was in the early 1990's–today there are even more options, including completely in the canal hearing aids (CIC’s) that are so small as to fit totally inside the canal; as well as “open fit” hearing aids that fit behind the ear and connect to a small wire in the canal)
The most amazing change was digital hearing aids, as opposed to the old analog versions that my dad used. Like the compact disc revolution, digital hearing aids use a computer chip to digitize sound. The sound is then analyzed and adjusted based on your hearing loss profile. Missing a lot in the middle sound spectrum? The hearing aid will goose those frequencies up while holding the upper and lower frequencies level. That is what my profile dictated, reflecting my congenital hearing loss related to the otosclerosis in my stapes.
Digitization also allowed for miniaturization of components–hence the new ITC models.
The audiologist at the dispensary gave me yet another hearing test to confirm the results of the Guild test (measure twice, order once), and she suggested hearing aids from Siemens, then one of the leaders in digital technology. I liked the sound of Siemens–I knew that their HVAC and building management technology was among the best, and who can argue with German engineering? And so, sight unseen, I ordered a pair of ITCs from Siemens, with the guarantee that I could return them within 60 days if I did not like the way they sounded.
The price was $3,800 for the pair. Yes, that is correct, and amazingly to me, hearing aids were not and still are not covered by most medical plans. I did not have the cash available, but I needed these prosthetic devices to be able to hear, and so I did what any red-blooded American would do–I whipped out a credit card.
I often wonder why eyeglasses and dental implants, walkers and replacement limbs and even Viagra are covered by medical insurance but hearing aids are not. Is it because most folks with hearing aids are older, perhaps out of the workforce, and so there is less pressure on traditional corporate plans to include these items? The deaf community is fairly strong and can be militant to protect its interests, but it seems to be dominated by those with total hearing loss from birth–those whom hearing aids will not help. Perhaps this has reduced pressure for coverage in medical plans? Whatever the reason, hearing aids remain one of the prosthetic devices that you must pay for 100% on your own, which is an incredible burden for those of us who need them to be able to function in society.
My dad always had the latest hearing aid technology and personalized adaptations because as a disabled veteran he was treated at VA hospitals (paid for by the Canadian government). Every two or three years he would go in for a test and receive a new set of hearing aids. About the time I got my Siemens he received his first digital set also, and they came with a remote control to raise and lower the volume!
The audiologist injected warm wax into my ear, with a string in the middle to be able to pull it back out when it hardened. Trust me, having someone inject warm wax into your ear is not the most comfortable thing in the world. This became the mold of my ear that was sent to Siemens, who constructed a small shell and inserted the micro technology that would let me hear again.
Three weeks later, I was sitting in her office in Belmont as she opened up a small package and showed me my new ears. I started involuntarily shaking for some reason. She opened a small door on the side of each device and inserted a very small battery, snapped it shut, and gently slid them into my ears. For a second there was nothing, and then I was assaulted by huge booming echoes inside my head. What was that? Damn, it was my own breathing! And I also heard the air conditioning ducts swell and boom with air as the system cycled on above me. It was so loud that I was momentarily disoriented.
The audiologist smiled and asked me to remove them. She opened the battery doors and inserted small cables that were hooked up to her computer and then reinserted the hearing aids in my ears. Now came the really cool part–adjusting the digitization to best meet my personal tastes. By altering the amplification of different frequencies she could make the sounds I heard more acceptable to me. Even though Siemens had pre-set the hearing aids to meet my hearing test profile, they still needed customization.
I realized that I was greedy for sound. I told her I wanted these things pushed up so high that I could hear a mouse’s heartbeat in the walls. I wanted to be able to hear people whispering to each other across a room. But I settled for simply hearing more normal things. She warned me that it would take time to get used to hearing again, and that I should wear the hearing aids for a bit and then take them out until gradually my brain got re-accustomed to sound.
It was a muggy spring afternoon in Belmont. A light rain had fallen while I was getting fitted, and now the sun was breaking through the choppy gray clouds. Sitting in my car parked on the street outside the dispensary, I opened the windows and put the hearing aids back in my ears.
I was aware of the gentle hissing of car tires passing by on the wet road. And I heard a robin chirping in a nearby tree. And I suddenly, spontaneously, broke down sobbing as these sounds that I had not heard in many years washed into my brain and touched my soul. Hearing loss is an emotional as well as physical loss. I realized that my world had become much the poorer for not being to hear simple wonders like tires on a wet road, or the sound of my children sighing in their sleep. And now these amazing sounds were again in my brain. It felt like the world had instantaneously gone from monochromatic to being infused with a rainbow of colors. And it was in equal parts astonishing and disorienting.
At a hockey game at the Boston Garden a few nights later, I had to rip the hearing aids out of my ears. Not so much from the loud crowd noise as from the confusion of being able to hear conversations three rows ahead of me almost as well as I could hear the person sitting next to me. My head was spinning trying to filter out all the new sounds and focus on the ones that mattered. It takes time to retrain the brain.
Now, many years and a dozen sets of hearing aids later, I still have an emotional reaction every time I get a new set of hearing aids that have more power and let me hear well again. But clearly my hearing is declining at an inclining speed, and so I made the decision to have a stapedectomy, to replace the betraying stapes bones with titanium prosthetics, and hopefully stop the conductive bone loss decline (the nerve damage will remain forever). I will always have to wear hearing aids, but perhaps I will be able to stop the progression towards larger and more powerful ones every few years.
They are working now on implanted hearing aids that will let you swim and take showers with the devices installed, and perhaps that is in my future. But one thing I know for sure–I will always be a prosthetic man for the rest of my life.
This was my memory of hearing aids, and the thought so depressed me that I delayed going to a dispenser to order a pair until long after the hearing test at the Boston Guild for the Hard of Hearing.
But when I finally went to the hearing aid dispenser in Belmont, Massachusetts who was recommended by the Guild, I found that the whole universe of hearing aids had changed. There were “in-the-canal” hearing aids (ITC) that were so small as to fit discretely into the canal and be almost invisible from the outside. For more power (and to offset more hearing loss) there were half-shells, and full-shells, and behind the ear hearing aids, each one allowing for larger batteries and therefore more power to offset more hearing loss.
(Note that this was in the early 1990's–today there are even more options, including completely in the canal hearing aids (CIC’s) that are so small as to fit totally inside the canal; as well as “open fit” hearing aids that fit behind the ear and connect to a small wire in the canal)
The most amazing change was digital hearing aids, as opposed to the old analog versions that my dad used. Like the compact disc revolution, digital hearing aids use a computer chip to digitize sound. The sound is then analyzed and adjusted based on your hearing loss profile. Missing a lot in the middle sound spectrum? The hearing aid will goose those frequencies up while holding the upper and lower frequencies level. That is what my profile dictated, reflecting my congenital hearing loss related to the otosclerosis in my stapes.
Digitization also allowed for miniaturization of components–hence the new ITC models.
The audiologist at the dispensary gave me yet another hearing test to confirm the results of the Guild test (measure twice, order once), and she suggested hearing aids from Siemens, then one of the leaders in digital technology. I liked the sound of Siemens–I knew that their HVAC and building management technology was among the best, and who can argue with German engineering? And so, sight unseen, I ordered a pair of ITCs from Siemens, with the guarantee that I could return them within 60 days if I did not like the way they sounded.
The price was $3,800 for the pair. Yes, that is correct, and amazingly to me, hearing aids were not and still are not covered by most medical plans. I did not have the cash available, but I needed these prosthetic devices to be able to hear, and so I did what any red-blooded American would do–I whipped out a credit card.
I often wonder why eyeglasses and dental implants, walkers and replacement limbs and even Viagra are covered by medical insurance but hearing aids are not. Is it because most folks with hearing aids are older, perhaps out of the workforce, and so there is less pressure on traditional corporate plans to include these items? The deaf community is fairly strong and can be militant to protect its interests, but it seems to be dominated by those with total hearing loss from birth–those whom hearing aids will not help. Perhaps this has reduced pressure for coverage in medical plans? Whatever the reason, hearing aids remain one of the prosthetic devices that you must pay for 100% on your own, which is an incredible burden for those of us who need them to be able to function in society.
My dad always had the latest hearing aid technology and personalized adaptations because as a disabled veteran he was treated at VA hospitals (paid for by the Canadian government). Every two or three years he would go in for a test and receive a new set of hearing aids. About the time I got my Siemens he received his first digital set also, and they came with a remote control to raise and lower the volume!
The audiologist injected warm wax into my ear, with a string in the middle to be able to pull it back out when it hardened. Trust me, having someone inject warm wax into your ear is not the most comfortable thing in the world. This became the mold of my ear that was sent to Siemens, who constructed a small shell and inserted the micro technology that would let me hear again.
Three weeks later, I was sitting in her office in Belmont as she opened up a small package and showed me my new ears. I started involuntarily shaking for some reason. She opened a small door on the side of each device and inserted a very small battery, snapped it shut, and gently slid them into my ears. For a second there was nothing, and then I was assaulted by huge booming echoes inside my head. What was that? Damn, it was my own breathing! And I also heard the air conditioning ducts swell and boom with air as the system cycled on above me. It was so loud that I was momentarily disoriented.
The audiologist smiled and asked me to remove them. She opened the battery doors and inserted small cables that were hooked up to her computer and then reinserted the hearing aids in my ears. Now came the really cool part–adjusting the digitization to best meet my personal tastes. By altering the amplification of different frequencies she could make the sounds I heard more acceptable to me. Even though Siemens had pre-set the hearing aids to meet my hearing test profile, they still needed customization.
I realized that I was greedy for sound. I told her I wanted these things pushed up so high that I could hear a mouse’s heartbeat in the walls. I wanted to be able to hear people whispering to each other across a room. But I settled for simply hearing more normal things. She warned me that it would take time to get used to hearing again, and that I should wear the hearing aids for a bit and then take them out until gradually my brain got re-accustomed to sound.
It was a muggy spring afternoon in Belmont. A light rain had fallen while I was getting fitted, and now the sun was breaking through the choppy gray clouds. Sitting in my car parked on the street outside the dispensary, I opened the windows and put the hearing aids back in my ears.
I was aware of the gentle hissing of car tires passing by on the wet road. And I heard a robin chirping in a nearby tree. And I suddenly, spontaneously, broke down sobbing as these sounds that I had not heard in many years washed into my brain and touched my soul. Hearing loss is an emotional as well as physical loss. I realized that my world had become much the poorer for not being to hear simple wonders like tires on a wet road, or the sound of my children sighing in their sleep. And now these amazing sounds were again in my brain. It felt like the world had instantaneously gone from monochromatic to being infused with a rainbow of colors. And it was in equal parts astonishing and disorienting.
At a hockey game at the Boston Garden a few nights later, I had to rip the hearing aids out of my ears. Not so much from the loud crowd noise as from the confusion of being able to hear conversations three rows ahead of me almost as well as I could hear the person sitting next to me. My head was spinning trying to filter out all the new sounds and focus on the ones that mattered. It takes time to retrain the brain.
Now, many years and a dozen sets of hearing aids later, I still have an emotional reaction every time I get a new set of hearing aids that have more power and let me hear well again. But clearly my hearing is declining at an inclining speed, and so I made the decision to have a stapedectomy, to replace the betraying stapes bones with titanium prosthetics, and hopefully stop the conductive bone loss decline (the nerve damage will remain forever). I will always have to wear hearing aids, but perhaps I will be able to stop the progression towards larger and more powerful ones every few years.
They are working now on implanted hearing aids that will let you swim and take showers with the devices installed, and perhaps that is in my future. But one thing I know for sure–I will always be a prosthetic man for the rest of my life.
Sunday, July 3, 2011
A Personal History of Hearing Loss
Hearing loss has always been a part of my life. My father wore hearing aids my entire life–big plugs of flesh-colored plastic in his ears that were connected by plastic tubes to the ear-stems of his black glasses where the batteries were installed. My cousins and I would have fun cupping our hands on his ears to play whistling sounds when he was sitting down, and he would playfully bat our hands away and smile shyly.
Those were the hearing aids I most remember, but even earlier in my life he used to have a transistor-radio sized power pack in his shirt pocket that was connected by a long wire to his earpieces. I know of these from the old home movies we have of my dad, as well as seeing them in his bedside table drawers when I was a kid.
My dad lost his hearing when a bomb blew up next to him somewhere in Europe during WW II. I never got the whole story straight, but the bomb also sent a piece of shrapnel into his chest, stopping millimeters away from his aorta. I guess losing his hearing was a small price to pay when compared to losing his life.
Dad was in the Canadian army, and from his discharge until the day he died he collected a disability pension from the Canadian government for his loss of hearing (and that pension continues on even after his death, as my mom still receives a portion of the pension). That pension helped cover the lean times when Sam’s Army Navy Store was not doing well, and it helped ease my parents’ retirement years. It helped pay for our family vacations and helped me go to college. It was not a lot of money, but it made a difference to our lives.
I have so many memories of life with a deaf person, or hard of hearing person, or whatever we want to term it. Waking him up was always frightening because he would jump with a frightful start–he could not hear you coming in, and so you had to shake him. Mom learned to get up when his alarm went off because he could not hear it. Conversation at the dinner table was almost impossible when he was chewing–the noise of the mastication drowned out much of what he could hear, especially if what he was eating was crunchy (like a salad or an apple). He shied away from going out to parties or even dinner with others because he had to struggle to hear what they were saying. When we went skiing, he had specially-made goggles that fit over his glasses–he could not take off those glasses because they held his hearing aid power source. And then there was the television each night–turned up to a level that shook the house, meaning it was impossible to have a conversation with him once he plunked himself down in his easy chair.
Who would have thought that I would be facing the same challenges decades later? No bomb went off next to me, so why would I worry about going deaf?
As I think back on my intersection with hearing, I recall other events. As a child, I lisped. In elementary school they pulled me out of class for hearing tests and speech therapy sessions. Was there something in my hearing even then? I don’t recall any mention of hearing problems, only speech issues, but the hearing tests they did were not very subtle–I could see the audiologist turning the knobs on her machine and could easily anticipate when I was supposed to signal that I had heard the beep or tone. And for some of those tones who can really be sure you hear them? So you raise your hand when you think it is appropriate, and if you are at all smart and the audiologist is not all that careful it is pretty easy to play along.
One of the family army navy stores was in West Hartford Center, just down the road from the American School for the Deaf. I drove by it every day to and from work, and my cousin’s wife had actually taught there for a while years before, so I was always aware of it. But I also was not all that curious about it–after all, my father’s hearing loss was war related, so why would I worry about it?
Students from ASD would periodically come into our store to buy clothes, flashing hand signs to each other and basically acting like any other teenagers–raucous, clowning around–but not loud. Their dancing fingers played out a graceful hand ballet that was mesmerizing. And the cone of silence surrounding them was both exclusionary and isolating, like an energy field that held them a bit apart from the rest of the world.
My older cousin who ran our West Hartford store hired a young punk named Michael Donoghue to work for us. Michael was perhaps a year or so younger than me, and he was thin and wiry with thick black hair, green flashing eyes, and a hard street attitude that set his jaw at a tough and abrasive angle. I never knew his story, but you could tell that he came from a pretty tough background, quick with his fists and mischievous in a sometimes mean way. I did not like him very much, but he was tolerated and at least worked hard in the store.
Sometimes when kids from ASD came in, Michael would sneak up behind them and start yelling at them and swearing at them, thinking it great fun that they could not hear anything he was saying. When they would turn around, he would quickly smile and ask if he could help them with anything, and then treat them as customers. He thought this was hysterical–it turned my stomach, but there was nothing I could do about it.
One day four kids from ASD came in on a slow Saturday when no one else was in the store. They were hand-signing away and looking at jeans along the north wall of the store, with their backs turned to the main portion of the retail space. Michael walked up behind them and went into his disparaging rant. Suddenly, one of the kids turns around and says, “What the fuck did you say?” And then he cold-cocked a shocked and frozen Michael in the face, flashed some hand signs to his friends, and they left the store. The manager and I broke up laughing.
In one way or another I was around hearing loss, although I was often not generally aware of it.
Many years later I was working in Boston, running the New England region for Kinney System, the parking company. I was in my mid-30's, and my job often involved meeting with clients and potential clients. Over time, I realized that I was sometimes missing a lot of what was being said at those meetings, which was quite dangerous to our business. If I misunderstood a directive we could lose the contract. I was pretty good at reading lips and interpolating the context of discussions, and I was able to muddle through, but it was getting risky to keep doing this.
So I started bringing my assistant regional managers with me to client meetings on the pretext that it would show the clients that we had depth of management, and also to help train them to be able to better understand client objectives. But as soon as we left the meetings I would debrief them to make sure I had not missed anything. Clearly there was a problem here, although I was in denial enough to not want to dig deeper into what was going on.
One day I was contacted by a major construction firm in the Boston region. They were putting together a team to propose building Intermodal Transportation Centers for the Massachusetts Bay Transportation Authority’s ICET initiative, and they wanted me to be the parking operations partner. They had heavy duty lawyers and bond underwriters and engineers and accountants on the team, and the idea was to get the contract for all MBTA ICET construction for the next five years. We would finance and build train stations with bus depots and parking garages, and Kinney would lease and manage the garages. I had recently won the contract to lease and manage the MBTA’s existing parking facilities, and so they figured I would be a strong addition to the team.
Over several months we fashioned a massive response to the RFP, and I contributed the parking garage development and operating plan. Then came the day where we had to make a team presentation to the MBTA Board of Directors. I was not allowed to bring one of my assistants with me–there was not enough room. There must have been thirty team members at the presentation, which was held in the MBTA Board Room in Boston. As soon as we entered the room I knew I was in trouble–the Board sat at a horseshoe table at one far end of the massive room, and our chairs were arrayed in rows at the other end of the room. There was no way in hell that I was going to be able to hear anything said in that room, not with the distance and the high ceilings.
I turned to the engineer sitting next to me and told him I was deaf, so that he needed to tell me what they were saying if it pertained to parking. He said he understood. And so the presentation proceeded, made by the lead attorney and someone from the construction firm. I heard not a word. But the Board seemed to mainly listen and only occasionally speak to the two presenters, and no one else seemed to be saying anything, so I felt I might be okay. Suddenly the engineer next to me nudged me and said, they are asking about parking. Huh, what are they asking, I hissed? He just said, get up and speak. Shit.
And so I stood up and made a wild guess about what they might have been asking. I laid out how the parking would work, how we would finance it and control revenues, and how it would operate at each facility. When I was done everyone sat there and stared at me. Holy shit, I must have totally missed the question! I flushed red and sat down, trying to hide behind the guy in front of me. I had totally blown a chance to tie into one of the largest parking construction projects in a decade. And I may have lost the whole project for the team. That is what I was thinking.
After the presentation broke up, the lawyer shepherded us all into a side room to debrief the team. As we walked in, he strode up to me and shook my hand briskly, putting a warm hand on my back. He told me that my answer was perfect, brilliant even, and that I had totally nailed it for the team! The head of the construction team patted me on the back and smiled. I about shit my pants. Later I pulled the lawyer aside–we had known each other from my days as a real estate asset manager–and I confided in him that I had heard not a word of the presentation, that when I gave my answer in that room I had no clue what was being asked of me. He turned a bit pale for a minute while he digested the potential disaster that was averted. And then he laughed.
You would think that this would have been enough to get me to an audiologist to check out what was going on in my ears. But denial is a strong demon. After growing up with a deaf father there was no way in hell I was going to be deaf. No way.
One day I was reading a sports article about a running back in the NFL. He had been a star in college and was drafted in the first round–I think by the Packers. But once he hit camp, he was a bust. He could not seem to find the holes he used to find so easily in college–perhaps the speed and size of the pro game was too much for him. After a season, he was cut, and the next team that picked him up also cut him. Finally, one last team signed him to a cheap contract. One of the coaches noticed that the guy was nearly blind when he took off his coke-bottle thick glasses, then went to the old college tapes and noticed that the kid used to wear the glasses in games but now he no longer wore them. The coach asked about this, and the kid said he hated running with the glasses on. Do you wear contacts, the coach asked? Nope. They got him fitted with contacts and suddenly he was hitting those holes like he used to!
What a dope! And then the level of my own denial hit me. I called the Boston Guild for the Hard of Hearing and made an appointment for a hearing test.
The Guild was in an old Brownstone in the Back Bay. Walking in I was met with a history presentation of old hearing aids, some of which I had seen my dad using. I went upstairs and sat in the sound booth and listened to the tones and beeps in the headphones she placed on my ears, first the left ear and then the right ear. Hi tones getting higher and higher. Low tones getting lower and lower. Then I had to repeat words she said. Then she placed a different headset that was on the bone behind my ear and again we ran the tonal scales.
The audiologist sat situated so I could see her face through a small rectangle of glass, but not her hands as she manipulated the dials on the tone machine. I tried to guess as best I could, but she was smart and mixed things up, going back to re-test tones that I guessed on. When the test was done, I found myself soaked in sweat with the effort of listening–and with the deep emotions that this was bringing up in me.
I heard her voice in the headphones, rich and melodious and thankfully loud. “Who in your family is deaf?” she asked. I had not told her about my history. “My dad, but he lost his hearing in the war when a bomb went off next to him.” “Well, he would have lost his hearing eventually anyway,” she said. “Your hearing loss is congenital, it is hereditary. The bomb accelerated his loss.” I was floored.
In retrospect, I should have known all along. As I said, denial is a powerful force. If the bomb blew up next to my dad’s left side, how come he had bi-lateral hearing loss? How come he had conductive bone loss as well as nerve damage from the loud noise? I had never bothered to consider this, but now the reality hit me in the face as surely as the ASD friend hit Michael Donoghue–fast and certain and stunning.
Those were the hearing aids I most remember, but even earlier in my life he used to have a transistor-radio sized power pack in his shirt pocket that was connected by a long wire to his earpieces. I know of these from the old home movies we have of my dad, as well as seeing them in his bedside table drawers when I was a kid.
My dad lost his hearing when a bomb blew up next to him somewhere in Europe during WW II. I never got the whole story straight, but the bomb also sent a piece of shrapnel into his chest, stopping millimeters away from his aorta. I guess losing his hearing was a small price to pay when compared to losing his life.
Dad was in the Canadian army, and from his discharge until the day he died he collected a disability pension from the Canadian government for his loss of hearing (and that pension continues on even after his death, as my mom still receives a portion of the pension). That pension helped cover the lean times when Sam’s Army Navy Store was not doing well, and it helped ease my parents’ retirement years. It helped pay for our family vacations and helped me go to college. It was not a lot of money, but it made a difference to our lives.
I have so many memories of life with a deaf person, or hard of hearing person, or whatever we want to term it. Waking him up was always frightening because he would jump with a frightful start–he could not hear you coming in, and so you had to shake him. Mom learned to get up when his alarm went off because he could not hear it. Conversation at the dinner table was almost impossible when he was chewing–the noise of the mastication drowned out much of what he could hear, especially if what he was eating was crunchy (like a salad or an apple). He shied away from going out to parties or even dinner with others because he had to struggle to hear what they were saying. When we went skiing, he had specially-made goggles that fit over his glasses–he could not take off those glasses because they held his hearing aid power source. And then there was the television each night–turned up to a level that shook the house, meaning it was impossible to have a conversation with him once he plunked himself down in his easy chair.
Who would have thought that I would be facing the same challenges decades later? No bomb went off next to me, so why would I worry about going deaf?
As I think back on my intersection with hearing, I recall other events. As a child, I lisped. In elementary school they pulled me out of class for hearing tests and speech therapy sessions. Was there something in my hearing even then? I don’t recall any mention of hearing problems, only speech issues, but the hearing tests they did were not very subtle–I could see the audiologist turning the knobs on her machine and could easily anticipate when I was supposed to signal that I had heard the beep or tone. And for some of those tones who can really be sure you hear them? So you raise your hand when you think it is appropriate, and if you are at all smart and the audiologist is not all that careful it is pretty easy to play along.
One of the family army navy stores was in West Hartford Center, just down the road from the American School for the Deaf. I drove by it every day to and from work, and my cousin’s wife had actually taught there for a while years before, so I was always aware of it. But I also was not all that curious about it–after all, my father’s hearing loss was war related, so why would I worry about it?
Students from ASD would periodically come into our store to buy clothes, flashing hand signs to each other and basically acting like any other teenagers–raucous, clowning around–but not loud. Their dancing fingers played out a graceful hand ballet that was mesmerizing. And the cone of silence surrounding them was both exclusionary and isolating, like an energy field that held them a bit apart from the rest of the world.
My older cousin who ran our West Hartford store hired a young punk named Michael Donoghue to work for us. Michael was perhaps a year or so younger than me, and he was thin and wiry with thick black hair, green flashing eyes, and a hard street attitude that set his jaw at a tough and abrasive angle. I never knew his story, but you could tell that he came from a pretty tough background, quick with his fists and mischievous in a sometimes mean way. I did not like him very much, but he was tolerated and at least worked hard in the store.
Sometimes when kids from ASD came in, Michael would sneak up behind them and start yelling at them and swearing at them, thinking it great fun that they could not hear anything he was saying. When they would turn around, he would quickly smile and ask if he could help them with anything, and then treat them as customers. He thought this was hysterical–it turned my stomach, but there was nothing I could do about it.
One day four kids from ASD came in on a slow Saturday when no one else was in the store. They were hand-signing away and looking at jeans along the north wall of the store, with their backs turned to the main portion of the retail space. Michael walked up behind them and went into his disparaging rant. Suddenly, one of the kids turns around and says, “What the fuck did you say?” And then he cold-cocked a shocked and frozen Michael in the face, flashed some hand signs to his friends, and they left the store. The manager and I broke up laughing.
In one way or another I was around hearing loss, although I was often not generally aware of it.
Many years later I was working in Boston, running the New England region for Kinney System, the parking company. I was in my mid-30's, and my job often involved meeting with clients and potential clients. Over time, I realized that I was sometimes missing a lot of what was being said at those meetings, which was quite dangerous to our business. If I misunderstood a directive we could lose the contract. I was pretty good at reading lips and interpolating the context of discussions, and I was able to muddle through, but it was getting risky to keep doing this.
So I started bringing my assistant regional managers with me to client meetings on the pretext that it would show the clients that we had depth of management, and also to help train them to be able to better understand client objectives. But as soon as we left the meetings I would debrief them to make sure I had not missed anything. Clearly there was a problem here, although I was in denial enough to not want to dig deeper into what was going on.
One day I was contacted by a major construction firm in the Boston region. They were putting together a team to propose building Intermodal Transportation Centers for the Massachusetts Bay Transportation Authority’s ICET initiative, and they wanted me to be the parking operations partner. They had heavy duty lawyers and bond underwriters and engineers and accountants on the team, and the idea was to get the contract for all MBTA ICET construction for the next five years. We would finance and build train stations with bus depots and parking garages, and Kinney would lease and manage the garages. I had recently won the contract to lease and manage the MBTA’s existing parking facilities, and so they figured I would be a strong addition to the team.
Over several months we fashioned a massive response to the RFP, and I contributed the parking garage development and operating plan. Then came the day where we had to make a team presentation to the MBTA Board of Directors. I was not allowed to bring one of my assistants with me–there was not enough room. There must have been thirty team members at the presentation, which was held in the MBTA Board Room in Boston. As soon as we entered the room I knew I was in trouble–the Board sat at a horseshoe table at one far end of the massive room, and our chairs were arrayed in rows at the other end of the room. There was no way in hell that I was going to be able to hear anything said in that room, not with the distance and the high ceilings.
I turned to the engineer sitting next to me and told him I was deaf, so that he needed to tell me what they were saying if it pertained to parking. He said he understood. And so the presentation proceeded, made by the lead attorney and someone from the construction firm. I heard not a word. But the Board seemed to mainly listen and only occasionally speak to the two presenters, and no one else seemed to be saying anything, so I felt I might be okay. Suddenly the engineer next to me nudged me and said, they are asking about parking. Huh, what are they asking, I hissed? He just said, get up and speak. Shit.
And so I stood up and made a wild guess about what they might have been asking. I laid out how the parking would work, how we would finance it and control revenues, and how it would operate at each facility. When I was done everyone sat there and stared at me. Holy shit, I must have totally missed the question! I flushed red and sat down, trying to hide behind the guy in front of me. I had totally blown a chance to tie into one of the largest parking construction projects in a decade. And I may have lost the whole project for the team. That is what I was thinking.
After the presentation broke up, the lawyer shepherded us all into a side room to debrief the team. As we walked in, he strode up to me and shook my hand briskly, putting a warm hand on my back. He told me that my answer was perfect, brilliant even, and that I had totally nailed it for the team! The head of the construction team patted me on the back and smiled. I about shit my pants. Later I pulled the lawyer aside–we had known each other from my days as a real estate asset manager–and I confided in him that I had heard not a word of the presentation, that when I gave my answer in that room I had no clue what was being asked of me. He turned a bit pale for a minute while he digested the potential disaster that was averted. And then he laughed.
You would think that this would have been enough to get me to an audiologist to check out what was going on in my ears. But denial is a strong demon. After growing up with a deaf father there was no way in hell I was going to be deaf. No way.
One day I was reading a sports article about a running back in the NFL. He had been a star in college and was drafted in the first round–I think by the Packers. But once he hit camp, he was a bust. He could not seem to find the holes he used to find so easily in college–perhaps the speed and size of the pro game was too much for him. After a season, he was cut, and the next team that picked him up also cut him. Finally, one last team signed him to a cheap contract. One of the coaches noticed that the guy was nearly blind when he took off his coke-bottle thick glasses, then went to the old college tapes and noticed that the kid used to wear the glasses in games but now he no longer wore them. The coach asked about this, and the kid said he hated running with the glasses on. Do you wear contacts, the coach asked? Nope. They got him fitted with contacts and suddenly he was hitting those holes like he used to!
What a dope! And then the level of my own denial hit me. I called the Boston Guild for the Hard of Hearing and made an appointment for a hearing test.
The Guild was in an old Brownstone in the Back Bay. Walking in I was met with a history presentation of old hearing aids, some of which I had seen my dad using. I went upstairs and sat in the sound booth and listened to the tones and beeps in the headphones she placed on my ears, first the left ear and then the right ear. Hi tones getting higher and higher. Low tones getting lower and lower. Then I had to repeat words she said. Then she placed a different headset that was on the bone behind my ear and again we ran the tonal scales.
The audiologist sat situated so I could see her face through a small rectangle of glass, but not her hands as she manipulated the dials on the tone machine. I tried to guess as best I could, but she was smart and mixed things up, going back to re-test tones that I guessed on. When the test was done, I found myself soaked in sweat with the effort of listening–and with the deep emotions that this was bringing up in me.
I heard her voice in the headphones, rich and melodious and thankfully loud. “Who in your family is deaf?” she asked. I had not told her about my history. “My dad, but he lost his hearing in the war when a bomb went off next to him.” “Well, he would have lost his hearing eventually anyway,” she said. “Your hearing loss is congenital, it is hereditary. The bomb accelerated his loss.” I was floored.
In retrospect, I should have known all along. As I said, denial is a powerful force. If the bomb blew up next to my dad’s left side, how come he had bi-lateral hearing loss? How come he had conductive bone loss as well as nerve damage from the loud noise? I had never bothered to consider this, but now the reality hit me in the face as surely as the ASD friend hit Michael Donoghue–fast and certain and stunning.
"Deaf"initions
On May 24th of 2011, I was admitted to St. Barnabas Hospital in Livingston, New Jersey for surgery on my right ear. It was an outpatient admission for a procedure called a stapedechtomy–where they remove the stapes, the smallest bones in your body, and replace them with a titanium prosthetic. The stapes are saddle-like structures that vibrate against other inner ear bones to transmit sound to your brain. I have heard that they are the only bones in the body that never grow and are the same size in adults as they are in newborns. Over the years, my stapes have become ossified, calcified, and no longer vibrate properly.
I am not deaf. That is, I am not totally deaf, nor was I born deaf. But I also have lost more than 80% of my normal hearing, to the point where I can hear almost nothing when my hearing aids have been removed. The deaf community would probably not define me as deaf because I do have some hearing and I was able to hear pretty well for most of my life. Hearing aids allow me to function more or less normally in the hearing world. Then again, I certainly do not have anything even close to normal hearing, even with the hearing aids.
So I am unsure what term to use to define my hearing status. “Hard of hearing” seems so outmoded–it brings to my mind cartoons of old men with long hearing horns clasped to their ears saying, “Eh? Can you speak up?” “Hearing impaired” sounds soulless and smacks of politically correct government-speak. Not having a good self-definition may not seem like such a big problem, but it does rob me of a good shorthand phrase to communicate my status to others in a concise manner.
Now, you may ask, why is it important to have a short-hand hook like this? The answer is that I have realized over the years that hearing loss is an invisible disability and I sometimes need to let people know that I have this problem because it is not readily evident.
No one bats an eye if you ask them to wait a minute while you put on your reading glasses so you can review a report they handed to you. People tend to hold doors open for someone who is using a cane or a walker. In these cases, they can see that you need some patience or an assist and they are generally fine with it. But even when you are wearing hearing aids people tend not to be aware of your hearing loss. It is hidden inside your head. And so they get frustrated, even angry, when you misunderstand what they are saying or ask them to please repeat themselves.
If you tell them that you are hard of hearing or deaf some people also assume you are stupid (there is a reason past generations referred to deaf people as dummies–there was a deaf baseball player at the turn of the century called “Dummy” Hoy, and he once even faced a deaf pitcher in 1902 called “Dummy” Taylor). These folks t-a-l-k t-o y-o-u r-e-a-l s-l-o-w and use very simple words and gestures, like they were speaking to a two year old or someone mentally deficient.
Probably the worst thing is that people assume you are either rude, dismissive, shy, or unfriendly because you often simply cannot follow the conversation–especially if there is a lot of background noise or you are in a group setting with lots of folks talking over each other. I am a gregarious person by nature, and few people would consider me to be shy or retiring, but as my hearing has worsened I find myself avoiding social situations, or sitting at tables in noisy bars and simply smiling a lot rather than joining into the conversation–because I have missed a huge portion of the discussion and I do not want to embarrass myself by saying something that is a total non sequitur.
And so I have taken to saying to people pretty early on in our acquaintance that I am deaf, or have hearing loss, or am hard of hearing, and I hope that they will understand–or at least that they won’t keep their hand in front of their mouth while they are speaking so I have a prayer of reading their lips and guessing at the context of the conversation in a noisy room.
The funny thing is that sometimes being this open about my disability can be a benefit, even a weapon. In the course of my work I have sometimes been deposed during lawsuits against my employers or the buildings I manage. Depositions are interesting circuses–you sit in a small conference room with lawyers from the other side and your own lawyer, and a court stenographer, and the lawyers get to go fishing to find out what you know, and to tie your story down in advance. But there is no judge, no referee, and the examining attorneys have a lot of leeway to go after you, to which your attorney can object on the record for the later review by the judge, yet in the deposition you are kind of fair game for almost anything.
Before any deposition, your lawyer invariably tells you several rules–always tell the truth; tell only what you actually know; don’t guess; answer only the exact question being asked; answer yes or now as often as you can; and don’t volunteer anything more than what is asked. The message is clear–don’t give the other side an inch, don’t help them at all, and let them figure out their own case. If that is not evident enough, many lawyers have you watch a training video in which actors are shown in scripted depositions where they get all twisted in knots by the other side and either lose the case, get embarrassed in court, or get fired. Simply put, a deposition is like trout fishing where the other side’s lawyer is an expert at laying out finely tied flies as he hunts up and down the river bank that is his case. And you are the trout that has to be smart enough and natural enough to know what is a real midge floating down for breakfast, and what is a hand-tied fake with sharp barbs in it. And you have only a second to make that decision before you rise to the bait.
Once as a deposition began, just before the court reporter turned on her machine, I looked across the table at a very smart-looking young lawyer and said to him, “Oh, I just want to let you know that I am hard of hearing, so please speak clearly when you ask me a question.” Well, he sat back like I had just hit him in the gut, looking flummoxed and a bit shaken. What did this mean, he was wondering? Would I suddenly be able to get out of any traps he laid for me? How was he supposed to handle this? When the deposition started, I could tell he was uncomfortable, asking me several times if I could hear him, talking a bit more slowly than he had before I had told him of my disability. Clearly I had thrown him off his game, and that made my deposition a lot easier for me. I have used this every deposition since and it has worked to a more or less better degree in humanizing me to the lawyers and tossing them a small curve ball to consider.
I am not deaf. That is, I am not totally deaf, nor was I born deaf. But I also have lost more than 80% of my normal hearing, to the point where I can hear almost nothing when my hearing aids have been removed. The deaf community would probably not define me as deaf because I do have some hearing and I was able to hear pretty well for most of my life. Hearing aids allow me to function more or less normally in the hearing world. Then again, I certainly do not have anything even close to normal hearing, even with the hearing aids.
So I am unsure what term to use to define my hearing status. “Hard of hearing” seems so outmoded–it brings to my mind cartoons of old men with long hearing horns clasped to their ears saying, “Eh? Can you speak up?” “Hearing impaired” sounds soulless and smacks of politically correct government-speak. Not having a good self-definition may not seem like such a big problem, but it does rob me of a good shorthand phrase to communicate my status to others in a concise manner.
Now, you may ask, why is it important to have a short-hand hook like this? The answer is that I have realized over the years that hearing loss is an invisible disability and I sometimes need to let people know that I have this problem because it is not readily evident.
No one bats an eye if you ask them to wait a minute while you put on your reading glasses so you can review a report they handed to you. People tend to hold doors open for someone who is using a cane or a walker. In these cases, they can see that you need some patience or an assist and they are generally fine with it. But even when you are wearing hearing aids people tend not to be aware of your hearing loss. It is hidden inside your head. And so they get frustrated, even angry, when you misunderstand what they are saying or ask them to please repeat themselves.
If you tell them that you are hard of hearing or deaf some people also assume you are stupid (there is a reason past generations referred to deaf people as dummies–there was a deaf baseball player at the turn of the century called “Dummy” Hoy, and he once even faced a deaf pitcher in 1902 called “Dummy” Taylor). These folks t-a-l-k t-o y-o-u r-e-a-l s-l-o-w and use very simple words and gestures, like they were speaking to a two year old or someone mentally deficient.
Probably the worst thing is that people assume you are either rude, dismissive, shy, or unfriendly because you often simply cannot follow the conversation–especially if there is a lot of background noise or you are in a group setting with lots of folks talking over each other. I am a gregarious person by nature, and few people would consider me to be shy or retiring, but as my hearing has worsened I find myself avoiding social situations, or sitting at tables in noisy bars and simply smiling a lot rather than joining into the conversation–because I have missed a huge portion of the discussion and I do not want to embarrass myself by saying something that is a total non sequitur.
And so I have taken to saying to people pretty early on in our acquaintance that I am deaf, or have hearing loss, or am hard of hearing, and I hope that they will understand–or at least that they won’t keep their hand in front of their mouth while they are speaking so I have a prayer of reading their lips and guessing at the context of the conversation in a noisy room.
The funny thing is that sometimes being this open about my disability can be a benefit, even a weapon. In the course of my work I have sometimes been deposed during lawsuits against my employers or the buildings I manage. Depositions are interesting circuses–you sit in a small conference room with lawyers from the other side and your own lawyer, and a court stenographer, and the lawyers get to go fishing to find out what you know, and to tie your story down in advance. But there is no judge, no referee, and the examining attorneys have a lot of leeway to go after you, to which your attorney can object on the record for the later review by the judge, yet in the deposition you are kind of fair game for almost anything.
Before any deposition, your lawyer invariably tells you several rules–always tell the truth; tell only what you actually know; don’t guess; answer only the exact question being asked; answer yes or now as often as you can; and don’t volunteer anything more than what is asked. The message is clear–don’t give the other side an inch, don’t help them at all, and let them figure out their own case. If that is not evident enough, many lawyers have you watch a training video in which actors are shown in scripted depositions where they get all twisted in knots by the other side and either lose the case, get embarrassed in court, or get fired. Simply put, a deposition is like trout fishing where the other side’s lawyer is an expert at laying out finely tied flies as he hunts up and down the river bank that is his case. And you are the trout that has to be smart enough and natural enough to know what is a real midge floating down for breakfast, and what is a hand-tied fake with sharp barbs in it. And you have only a second to make that decision before you rise to the bait.
Once as a deposition began, just before the court reporter turned on her machine, I looked across the table at a very smart-looking young lawyer and said to him, “Oh, I just want to let you know that I am hard of hearing, so please speak clearly when you ask me a question.” Well, he sat back like I had just hit him in the gut, looking flummoxed and a bit shaken. What did this mean, he was wondering? Would I suddenly be able to get out of any traps he laid for me? How was he supposed to handle this? When the deposition started, I could tell he was uncomfortable, asking me several times if I could hear him, talking a bit more slowly than he had before I had told him of my disability. Clearly I had thrown him off his game, and that made my deposition a lot easier for me. I have used this every deposition since and it has worked to a more or less better degree in humanizing me to the lawyers and tossing them a small curve ball to consider.
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