Between The Covers Book Club
In June, members enjoyed a lively discussion on Katherine Bouton’s book Living Better with Hearing Loss, while sipping wine and nibbling Flo Innes’ fantastic creations.
If you have not felt comfortable at book clubs, this one is for you. We had microphones to make sure we could all hear and JoAnne DeVries did a great job of moderating. Join us next time! Stay tuned for the next book and date selection in Listen!Up.
The topics of discussion were:
Denial and Excuses – “I can hear perfectly fine. If only you would not mumble”. We all agreed it is difficult for most of us to admit to hearing loss.
Not Ready for a Hearing Aid Yet – Another option could be Personal Sound Amplification Products (PSAPs), which are less expensive than hearing aids. While some of the group had tried a PSAP and found it to be awful, others agreed they are helpful to a person with mild hearing loss and probably better than nothing. However, the overall agreement was to see a hearing professional first.
Work – Your colleagues will help you if you admit to hearing loss at work and advise them exactly what would help you do your job properly.
Difficulties in Travel – Tell the agents that you are ‘deaf’ and you can’t hear the announcements. We all know what it feels like to be left behind! The book club members found ‘deaf’ to be more effective than hard of hearing or ‘disabled’. (Some of us ‘disabled’ folks have found a wheelchair waiting!)
When Hearing Aids are Not Enough – Assistive Listening Devices (ALDs) such as captions, loop systems, t-coils, door/phone/alarm clock flashers. One of our members uses nine ALDs to get through the day. It was agreed that if we live with a hearing person, we could rely on him/her to be an Assistive Listening Device.
The book is available in all forms at Amazon.com.
Here are some reviews from the former Executive Director of HLAA and our own Valerie Stafford-Mallis:
“This book is packed with up-to-date, well-researched information. The writing is easygoing, humorous, and perceptive. Anyone interested in hearing loss is fortunate to have a writer of Katherine’s caliber to tell it like it is and wake us up to a quality of life issue that has been misunderstood and ignored for far too long.”
–Brenda Battat, former executive director, Hearing Loss Association of America (HLAA)
“Katherine has written thoughtfully and thoroughly about the complex workplace issues people with hearing loss must navigate every day. While Katherine and I come at it from different perspectives — I work in the hearing loss field and am completely open about my hearing loss while she worked in a field where good hearing was assumed to be a prerequisite for being able to perform the essential duties of one’s job – the diversity of our perspectives supports a more robust conversation about how best to manage a difficult situation when there is no one correct answer and one size does not fit all. I am so glad people are at least having the conversation!”
–Valerie Stafford-Mallis, former Member of Hearing Loss Association of America (HLAA) Board of Trustees
Between The Covers Book Club
The Chapter’s “Between the Covers” Book Club meets twice a year, Spring and Fall. The next meeting is tentatively scheduled for May 15 at 5:00 PM.
Katherine Bouton’s first book, “Shouting Won’t Help”, was a “Covers” selection several years ago. Her follow-up book, “Living Better with Hearing Loss”, is a practical guide to daily life with hearing loss, from the mildest to the most severe.
With anecdotes, humor and hard-earned experience, the Hearing Loss Association Board member and former New York Times feature writer shares tips for travel, restaurants, the workplace, love, sex and friends.
Katherine was a writer and editor at the New York Times. She recounts:
“Hearing loss dominated my waking life. Every time someone said something to me that I couldn’t follow, every time I flinched at a loud noise, every time I couldn’t hear at the movies or the theater, every time I answered the phone and not only couldn’t tell who was calling but even whether the caller was male or female, I despaired … A transportation glitch, such as a stalled subway or a grounded plane, isn’t about being delayed or trapped or claustrophobic. It’s that I can’t hear what’s being said — not only announcements, but even speculation from fellow passengers. I am often reduced to tears of frustration, and sometimes I panic, unable to ask for help — because I can’t hear the answer or help myself”.
Familiar? Live better – read the book!
The book is available in all forms at Amazon.com.
SPRING MEETING TO BE ANNOUNCED
The Club’s meetings are over for 2016 and a spring 2017 meeting is being scheduled. If you have heard about or read a book related to hearing loss, let our President, JoAnne DeVries, know at President@hlas.org.
Our Clubs carry out our mission and the book club has introduced many members to communication and social strategies to make life a little better.
The Club will meet on Monday, November 14 at 5:30 PM at 1350 Main St. in Sarasota.
This is an outstanding book on everything you need to know about hearing loss that will have you laughing out loud in every chapter. Whether you are able to attend “Between the Covers” or not, you will identify with the situations addressed in the book.
From time to time, we will republish Gael’s article in “Hearing Health and Technology Matters” with permission of the editor. Here is last month’s article–
Here is one of Gael’s monthly columns for Hearing Health and Technology:
HOHS AND PROS
In the hearing loss world that I live in, there are HoHs and there are Pros:
HoH: Refers to a person who has hearing loss and who may also identify as hard of hearing, hearing-impaired, or hearing aid/cochlear implant user. (This term does not refer to all those affected by a person’s hearing loss, such as the moms and dads, life partners, children, and friends.)
Pro: Refers to someone who works in a hearing healthcare field, such as an audiologist or hearing instrument specialist, but this category also can include an Ear, Nose & Throat doctor, hearing aid manufacturer, and/or an assistive technology sales rep.
…now that we’ve got that out of the way…
If you’re a HoH, you have most likely—hopefully—met a Pro by now. You made an appointment, walked through that door and sat down to discuss your hearing with this Pro. (Just asking, did you check out the certificates on the wall? You want to see something official hanging there, with more substance than proof-of-participation in an online hearing aid course.)
At every meeting with your Pro, there should be a two-way conversation, an exchange of information. The Pro will ask you questions about your lifestyle and how your hearing loss has affected it. They’ll ask you—although not in these exact words—how you’re coping. She or he should explain the Big Picture of hearing loss—the things you need to know about your hearing that will help you move forward. At appropriate times, you’ll discuss different communication strategies, including assistive technology.
The key word is discuss. At no point should you be told what to do, when to do it, and that this-hearing-aid-here is THE best and ONLY option for you.
It doesn’t matter if you’re new to hearing loss, or if you’ve been using hearing aids for years—you have choices and input into decisions involving your aural rehabilitation, a fancy term for learning how to communicate and live better with hearing loss. If your Pro is bossy, a know-it-all or an uber-salesperson, get yourself a new Pro.
Most Pros are not like that; they welcome our input, because they are trained practitioners who care. However, some are a little behind on the learning curve of how to involve you in a two-way discussion, and you must learn to express your needs, to ask questions.
And it’s not always easy being in their shoes, either. Pity the poor Pro who must decipher the client’s answers to important questions.
Pro: Mr. Jones, it’s nice to meet you. Tell me why you’re here and how I can help you.
HoH: Well, my hearing’s not as good as it used to be.
Pro: Can you be more specific?
HoH: OK sure. My hearing’s WORSE than it used to be.
A polished Pro will eventually draw more information out of Mr. Jones, and a set of hearing tests will help fill in the blanks. It gets tougher when Mr. Jones tries on a hearing aid for the first time; the Pro must fine-tune it with the help of the computer—and more information from Mr. Jones.
Pro: So, how does my voice sound to you?
HoH: Not good.
Pro: Mr. Jones, can you give me a bit more to go on?
HoH: OK, just quit yelling and let me think. It’s loud, with sort of a high, hollow-y sound…no, hang on…tinny is more like it. Yep, a high, tinny-hollowy sound….no wait, I’ve got it! You sound like a really loud Daisy Duck who’s gone off her meds.
Pro: OK, I can work with that. Anything else?
HoH: Yes. I don’t like it.
Pro: Well, it takes time to get used to the new sounds. Your brain has to adjust.
HoH: My brain is already a little overloaded. I can’t remember what I had for breakfast.
Pro: Trust me, Mr. Jones. We’ll take it bit by bit, step by step. Before you know it, in a few short weeks, you’ll hardly know it’s in your ear.
When the HoH and Pro meet for the first time, it could-should be the start of a beautiful, trusting, effective client-professional friendship. That’s what both parties need to meet their mutual goals:
The person with hearing loss needs help in managing a life-changing hearing loss and to achieve optimal communication.
The hearing care professional wants job satisfaction, happy clients and a thriving business.
As HoHs, we need to understand that Pros cannot perform miracles unless the people they’re trying to help actively participate in the process. (And I believe that modern technology, which can coax hearing out of uncooperative cochleas and eardrums, is nothing short of a miracle!).
Pros need to understand the same thing. Give us the information we need, in a timely manner, help us express our feelings and needs, discuss affordable and appropriate technology, and work with us to develop a plan for better hearing and communication.
When that kind of Pro and that kind of HoH meet, magic can happen.
Last month, Gael waxed poetic about her hearing aids. With permission granted by “Hearing Health and Technology Matters”, here is her poem.
LOVE POEM FOR MY HEARING AIDS
You’re lying on my bedside table and before I fall asleep
I’m looking at you closely, for the first time in a long time
I’m thinking about how much, to my surprise, I love you
Well, it’s not because of your looks.
One square inch of plastic and wires,
Your color referred to professionally as flesh tone
By people without imagination as beige
And by me, in all honesty, as ugly.
Your shape is a cross between an extracted tooth and a kidney bean
With a white beard that locks you into my ear
Your shiny surface reflects light, except where bits of wax
Nestle in your curves and creases, waiting to be wiped clean.
For such a small creature, you have a lot of holes,
Openings that suck sound in one end and belch it out the other
An air vent that keeps feedback to a minimum
Except when my ear canal widens when I brush my teeth,
Chew my food or laugh my head off.
Out of the biggest opening comes a plastic wheel-well
That clasps a fresh battery and disappears with it inside,
And when you’re ready, you chime your delight and immediately transform
From a lifeless lump of plastic
To a life-changing spark plug.
You know what they say about beauty, don’t you?
It’s what’s inside that counts, and I guess that’s true about you.
But I don’t really want to see your inner stuff
Because I’d be disappointed not to see tiny hearing elves
Making magic happen when that battery comes in.
Once I had a glimpse—
When I removed an aid from my ear to show a group of students
Half of it stuck stubbornly in my ear canal, and
Aghast, I held up the top half with its forlorn wires
Hanging naked and useless.
There was nothing to do but laugh, so we did.
I do love you, you know.
For all the times I’ve cursed you, dropped you, and lost you,
I have expected more from you than you can deliver,
Because you cannot be a perfect hearing system.
Not yet, anyway.
And I have not thanked you when you delivered more
Than I ever expected, giving me sounds that my memory had lost
And new ones that did not exist before my hearing left,
Like the sound of my baby breathing.
No, you’re not pretty.
You’re high maintenance.
You cost money.
But if I didn’t have you, I would be isolated, cut off from my people.
So no, you’re not pretty—
And I love you, good night.
Someone’s in the Kitchen with Tinnitus
Someone’s in the kitchen with Dinah
Someone’s in the kitchen I know (oh-oh-oh)
Someone’s in the kitchen with Dine-AHH
Making lots of noise, noise, noise!
The World Health Organization (WHO) says that “excessive noise seriously harms human health and interferes with people’s daily activities at school, at work, at home and during leisure time. It can disturb sleep, cause cardiovascular and psychophysiological effects [disturbances in mental health], reduce performance and provoke annoyance responses and changes in social behavior.”
And that’s just the effect on people with good hearing, who have no inner noise issues!
But for people like me, sound doesn’t have to be excessive in order to be crazy-making. Like millions of other people, I have tinnitus. Also, a form of hyperacusis. Plus, (I suspect), muscles in my middle ear that have become bored and gone rogue, nutso, off the wall.
For people like us, noise can unpleasantly affect our conversations, workouts, and every daily thing we do. But the WHO warning still applies; so far, my heart-health is holding up, but I can get pretty testy and jumpy at loud noises, which in turn affects my behavior. I don’t avoid social events, because that’s torture to an extrovert; I merely have to decide between the lesser of two evils—put up with the noise or sit at home with a book.
Tinnitus and hyperacusis are heterogeneous, meaning that each of us experiences them somewhat differently, from different causes. How we deal with it, both emotionally and physically, is individual and so is our success rate. And for some, our symptoms are ignited not just by sound, but by movement. The whooshing of my hyperacusis is brought on, not only by sound, but by muscle movement. An intake of breath, a turn of the head or – when lying in bed – turning over or moving a leg. And it doesn’t matter whose leg it is—mine, the Hearing Husband’s or the cat’s—anything that jostles me can bring on the dreaded whoosh. I’ve learned to reverse the process by making the movement again, or taking a deep breath, or hunching my shoulders or some other muscle movement that settles my head-noise down to its normal tinnitus. Until the next flare-up.
There’s not much I can do about nighttime whooshes—beyond sleeping alone in a mummy-like straight jacket in a cat-proof bedroom—but I can do something about the one of the noisiest places on earth—the kitchen.
Ah, the kitchen, where people congregate in the fragrant pit of fabulous food and gorgeous drinks, which cause the drool to pool in our mouths, anticipating the magical moment when we can actually eat.
But if you are sensitive to sound for any reason, kitchens can also be a nightmare. Hard floors create noise when it makes contact with anything—shoes, falling glassware, dogs’ fingernails. Chopping vegetables on a hard plastic cutting board is excruciating on the ears. Water steaming, veggies sizzling, and running faucets add up to one gigantic, horrific hissss. People-talk and laughter is amplified in the smaller confines of a kitchen.
Until the breakthrough cure for tinnitus and hyperacusis is discovered (probably within minutes of my leaving this earth), I’ll have to manage the kitchen noise the best I can. We’re putting in a new kitchen over the next year and we’re focusing on using sound-absorbing, noise-reducing materials.
1. A more open-concept space that won’t let sound bounce off the walls.
2. Floor: cork-based, treated wood, non-trip and washable carpets.
3. Counters: laminate-that-looks-like-granite and a butcher block section—and a center island, positioned for easy people flow (as in, get outta my way).
4. Scraping chair and table legs send me through the roof. So, anything that moves—devices, appliances or piece of furniture—will have noise-muffling, gliding bottoms.
5. Garburator: Not gonna happen. I’ll compost.
6. Drawers will be non-slamming and easy-sliding and the ones with cutlery will have sound absorbing mats to keep the clanking to a minimum.
7. Appliances must be quiet—and that means you, dishwasher, blender and fridge!
8. Timers will be visual or vibrating, rather than beeping or bellowing.
If too many people are talking in your kitchen, shoo them into another room with drinks and appetizers and when all else fails, hold an outside barbecue where the noise can be sucked up to the heavens.
If you have a noise sensitivity of any sort, understand and recognize your noise triggers and avoid them if possible. And for people with typical hearing and normal responses to sounds, we just want you to understand why sudden loud noises—such as your voice—can make us cringe. (Actually, we may not know why this happens, just that it does.) Please lift your chair when getting up from the table, and don’t turn on the blender without warning us. We’ll show our gratitude by replacing your noisy shoes with felt slippers.
Let’s hope that the next time someone or something is in the kitchen with Dinah, it doesn’t spark her tinnitus.
Everybody asks for things to be repeated. Whether you can hear people whispering in a noisy restaurant or have trouble understanding even your own mom on the phone, everyone needs to say pardon me on occasion.
Maybe a person is talking with a mouth full of food, munching words beyond recognition. More than one person is speaking at once, and your ears can’t keep straight who’s saying what. Words don’t seem to match the speaker’s facial expression—sad words but happy eyes, for example—and you don’t want to give the wrong response. In these situations, even ‘hearing’ people ask for repeats or clarification.
But for the person with hearing loss who needs darn near perfect listening conditions, these are only a few of the reasons our days are punctuated with Hey? What was that? Pardon me?
Having to ask the question is like a chronic toothache, but dealing with the responses can be jolting, even for the seasoned person with hearing loss.
Ask for a repeat once—and it’s given graciously.
Ask twice—and it’s repeated with concern.
Ask three times—and you get one of three responses:
- Impatience, a frown and maybe a little eyeball rolling
- “What are you deaf or something?”
- “Never mind, it’s not important.”
By the time you’ve asked a third time, your palms might be sweaty or you’re convinced the person is deliberately not communicating well, simply to annoy you. People with hearing loss don’t always operate at the top of their game—something to do with not being perfect people—but this third request is the absolute last chance and ultimate necessary time to say, “Hey, this isn’t working for me. Could you speak up/face me/swallow your food?” If we can’t say that, we’re likely to just start doing the bluff nod-and-smile. Or we go whole hog and not only leave the conversation, but town—boarding a bus in search of a new life in a new place where people speak more clearly.
If someone gives the B answer, you could reply calmly with the intention of making them sweat. “Yes. I am. Did I not mention that before? How silly of me. And not totally deaf, just enough hearing loss to make your limp-lip movements tough to understand.”
Of course, if we’re not good at sarcasm, we could try a little outrage: “Well, there’s no need to broadcast it!” Or simply start crying and leave for the bus station.
But if the person has the gall to deliver response C, don’t you dare consider skipping town. Do not leave the room or the conversation because there is only one answer – but you get to choose your tone of voice.
“Please. Do not say that to me. If you made the comment once, it was worth repeating. Even if you realized your remark was puny, mindless and not worth being allowed to live, let me make that decision.”
Say this any way you want. With a sweet face or a thundercloud, with a catch in your throat or a quiver on your lip. And it depends on who you’re talking to. We’re generally more polite with strangers and are, unfortunately, less patient with friends and family who should know better. I mean, really, how often do we have to explain this stuff?
And what our family and friends don’t realize is that we get as bored asking for repeats, as hearing people do giving them. Do they think we like having to slow down the conversation, or putting it completely into reverse? Do they think we enjoy watching their eye-rolling and sighs while we wait for them to repeat? And do they not understand that we have to fight our own twirling eyeballs when, after we ask them what they said, they can’t remember? Now we’re talking real pain!
Saying pardon me is built in to the hearing loss life, and the better we handle it, the less pain we feel. It starts with not putting all the blame on other people for conversations gone wrong. We can improve the physical listening environment and can clarify our needs with grace and confidence. (Oh, c’mon, we can at least try.)
Before you get on that bus, it might help to know that, accents aside; people speak the same way everywhere. It starts when bus driver says something to you while looking at his watch. You sigh. “Sorry, what was that that?”