Seen & Heard: David A. Bitters, Sr.

16 12 2016

Dave A. Bitters, Sr. was our Seen & Heard profile in the November/December 2016 issue of Hearing Loss Magazine, published bimonthly by the Hearing Loss Association of America (HLAA). I met and photographed him at HLAA Convention 2016 in Washington, D.C. this past June. Dave started the HLAA Midlands Chapter in Columbia, SC.

Join the Hearing Loss Association of America!
Do you have a hearing loss or know someone who does? Consider membership in the Hearing Loss Association of America. Student annual dues are $20, individual annual dues are $35, and family/couple annual dues are $45. Fees outside the U.S. are slightly higher. All memberships include discounts on hearing-related products, convention and special event early bird discounts, AVIS and Alamo car rental, and the award-winning Hearing Loss Magazine. Sign up for membership here.

© Cindy Dyer. All rights reserved.

sh-dave-bitters

DAVID A. BITTERS SR. / Columbia, South Carolina / Born 1957 in Pittsburgh, PA

DO YOU BELONG TO A CHAPTER? Yes, HLAA Midlands Chapter in Columbia, South Carolina.

HOW DID YOU FIND OUT ABOUT HLAA? I knew about HLAA and joined this past January, but there was no local chapter or even one in the state. With the help of the Lexington, South Carolina Sertoma Club I was able to start the Midlands Chapter. Being a chapter founder and president has allowed me to develop skills that I never envisioned. Sharing my knowledge with others and helping them find support is a feeling I cannot describe.

WHAT DO YOU LIKE BEST ABOUT HLAA CONVENTIONS? I like the State/Chapter Development Workshops and learning about how other chapters are run. As a first-time attendee, I found it overwhelming, but in a good way. All the information I received has motivated me even more to work and improve our town.

MY HEARING LOSS… was diagnosed when I was three years old. It was caused by a high fever from the measles. I got my first hearing aid in first grade and a cochlear implant when I was 45.

FUNNY HEARING LOSS MOMENT…  I found that my new puppy had chewed up my [cochlear implant] processor and I was completely deaf for three days.

MY FAVORITE LAZY DAY IS… watching three football games back-to-back-to-back.

MY BEST ROAD TRIP EVER WAS… Route 66 to the Grand Canyon.

MY FAVORITE THING TO WEAR IS… anything with the Pittsburgh Steelers colors and logo.

THE HARDEST THING I’VE EVER DONE WAS… going to a deaf college.

IN MY SPARE TIME, I… golf, listen to music and watch sports, live or on TV.

MUSICALLY INCLINED? I used to play the trumpet. Now, you would beg me not to try.

FIVE PLACES I HAVE LIVED… Pittsburgh, Pennsylvania; Rochester, Binghamton,
and Poughkeepsie, New York; Columbia, South Carolina

I COLLECT… Pittsburgh sports memorabilia and small Hallmark train engines.

I HAVE THE UNCANNY ABILITY TO… work out problems with computers and personal
devices, and not get lost when traveling.

MY FAVORITE SEASON IS… fall, for the colors of leaves and football.

MY LITTLE KNOWN TALENT IS… coaching baseball.

I SIMPLY CANNOT LIVE WITHOUT… football and baseball.

I AM… funny, friendly, and knowledgeable.

IF I RULED THE WORLD… the U.S. would have one political party where everyone works for a common goal. I hate the bickering, nothing gets done!

MY MOST-LOVED POSSESSIONS ARE… my dog and my cochlear implant.

I REALLY SHOULD START… painting my man cave.

I MOST DEFINITELY AM NOT… a house painter.

MY GREATEST ACCOMPLISHMENTS ARE… having a son, a good job, and surviving a hearing loss and now being able to help others on that journey.

I HAVE A WEAKNESS FOR… peanut butter.

FAVORITE COLOR? Black and gold

PETS? A dog, she’s a daddy’s girl

MY LONG-TERM GOAL IS… to get the state of South Carolina in compliance and work together to understand the needs of deaf and hard of hearing people in emergency situations.

HOW DO YOU WANT TO BE REMEMBERED?  For helping to make a difference on earth and putting a smile on people’s faces.

A LITTLE BIT MORE… I was mainstreamed in a hearing school and then attended a deaf college. I am one of only two deaf people who graduated with a Bachelor of Science degree in Photo Finishing Management—ever! I worked at IBM for 20 years. I received my first cochlear implant on my last job assignment and was laid off after it had been activated for just one month.

My current projects include starting the HLAA Midlands Chapter, and I also teach ASL three times a year to different senior groups. I volunteer teaching several topics related to computer technology in security and digital photography, and offer a computer help desk once a week in a senior center.

I currently teach a deaf sensitivity class twice a week at a local sheriff’s department. I work with fire departments to provide smoke alarms free of charge to people with hearing loss. I have designed a visor card for people with hearing loss in the state and for police officers.

 





Seen & Heard: Mike Gannon

6 09 2016

Mike Gannon is our other Seen & Heard profile in the September/October 2016 issue of Hearing Loss Magazine, published bimonthly by the Hearing Loss Association of America (HLAA). I met and photographed him at HLAA Convention 2016 in Washington, D.C. this past June. Mike is an inspirational speaker, motivational trainer, success coach and CEO of Fit for Success in Northern Virginia. His book, If These Ears Could Sing! The Living Law of Attraction in Action, is available on Amazon, Barnes & Noble and iTunes.

Join the Hearing Loss Association of America!
Do you have a hearing loss or know someone who does? Consider membership in the Hearing Loss Association of America. Student annual dues are $20, individual annual dues are $35, and family/couple annual dues are $45. Fees outside the U.S. are slightly higher. All memberships include discounts on hearing-related products, convention and special event early bird discounts, AVIS and Alamo car rental, and the award-winning Hearing Loss Magazine. Sign up for membership here.

© Cindy Dyer. All rights reserved.

S&H Mike Gannon

MIKE GANNON / Reston, Virginia / Born October 9 in Livonia, Michigan

MY HEARING LOSS… I was born profoundly deaf in both ears and wore very crude hearing aids (in the 1960s as a child). I never learned to sign, but learned to speak and read lips to communicate.

FUNNY HEARING LOSS MOMENT…  At the first birthday party I attended at age five, I observed all the kids moving their lips at the same time and I knew you were not supposed to speak when others were talking. It seemed like they were all saying the same thing. In actuality, they were singing “Happy Birthday.”

FAVORITE CHILDHOOD MEMORY…  Being the only deaf child in the school I attended,
I performed in the school choir with no one in the audience guessing I lip synced.

THE BEST GIFT I EVER GOT… my cochlear implants at age 40

THE FIRST THING I BOUGHT WITH MY OWN MONEY WAS… Arnold Schwarzenegger’s
first edition of Muscle and Fitness.

BEST ROAD TRIP EVER WAS… my trip to the Grand Canyon, where I heard the echo
of my own voice for the very first time

I LOSE ALL TRACK OF TIME WHEN I’M… coaching my clients.

MY LIFE IN CHAPTERS… A Prelude to Sound, If These Ears Could Sing, and Song Without
End (which happen to be actual chapters in my book, If These Ears Could Sing).

PETS? I have 19-year-old cat who believes I am her designated servant, which of course I am.

THE HARDEST THING I’VE EVER DONE WAS… to understand at age nine that my little brother who died from complications during heart surgery was never coming back.

I LOVE THE SOUNDS OF… nature—especially hearing geese flying over the lake at dusk.

FIVE PLACES I’VE LIVED… Michigan, Connecticut, Virginia, Washington, D.C. and in my imagination

I HAVE A WEAKNESS FOR… a dash of Bailey’s Irish Cream and Kahlua in my morning coffee—to honor my heritage, of course.

MUSICALLY INCLINED? I play the drums, keyboard and create music on the computer.

FIVE JOBS I’VE HAD… author, personal trainer/nutritionist, hypnotherapist, Neuro-Linguistic Programming (NLP) Practitioner, success and life coach

GET ANYTHING GOOD IN THE MAIL LATELY? Notice of my last mortgage payment

FAVORITE PLACE TO BE… on my deck at sunset with a cold beer

HAPPINESS IS… connecting each morning to sound. Thank you, bionic ears!

I SIMPLY CANNOT LIVE WITHOUT… being a relentless questioner.

I MOST DEFINITELY AM NOT… a recluse or an introvert.

I AM… unrelenting, introspective and purposeful.

MY FRIENDS SAY I AM… the energizer bunny!

I REALLY SHOULD STOP… listening to my inner critic.

I REALLY SHOULD START… taking the advice others pay me for.

WORDS I OVERUSE… drop down and give me 20

I HAVE A FEAR OF… losing electricity and being unable to recharge my batteries for my implants.

THE BEST THING SINCE SLICED BREAD IS… more of it!

IF I RULED THE WORLD… there would be no calories.

MY GREATEST ACCOMPLISHMENT IS… being able to speak as well as any hearing person.

I was amazed at the innovations that were showcased at HLAA Convention 2016. I stand in awe of the dedicated professionals who continue to give of their time and energy in service to others and making the world of sound richer than ever before.





HLM Cover Feature: Gael Hannan

3 09 2016

Writer, actor, hearing loss advocate and public speaker Gael Hannan is our cover feature for the September/October 2016 issue of Hearing Loss Magazine! I design and photograph for this bimonthly publication of the Hearing Loss Association of America (HLAA). Gael is such a lively spirit and wickedly funny. It was so much fun photographing her at HLAA Convention 2016 in Washington, D.C. this past June. (She mentioned she doesn’t live very far from enchanting Butchart Gardens in beautiful Vancouver—one of my favorite places to photograph. She doesn’t know it yet, but I’m campaigning to be her new best friend!)

© Cindy Dyer. All rights reserved.

WEB Gael Cover

Hearing Loss Isn’t Funny 

by Gael Hannan

Keep your sense of humor. Experts say this is the trick to living well with hearing loss.

But—what if you don’t have one?

Well then, they say, you can learn to laugh at yourself.

What if you don’t know HOW, or CAN’T, or don’t WANT to? What if hearing loss has amputated your funny bone?

WEB Gael TOCHearing loss just isn’t funny. Quite the opposite; it drains us physically, emotionally and often financially. It’s not easy to guffaw at malfunctioning hearing aids, confused conversations and irritated relationships. Giggles don’t bubble from our lips when we make a comment that makes other people stop talking and give us the “you’ve got two heads” look—which of course means the discussion has moved on to something else while we’re stuck in five minutes ago. (I wish someone would announce a new topic—“And now we shall talk about politics.”)

Even people who are natural rays of smiling sunshine find it challenging to deal with a life-changing hearing loss. How many people, reeling from a 20 decibel drop in hearing, would say, “Gosh, isn’t that just my luck? Say, did you hear the one about the guy who couldn’t hear his wife…”

How was I supposed to laugh when a goofy mutt woke me up to show off his breakfast: my hearing aid, with bits of it still clinging to the doggy-curls of his chin? How to cough up a chuckle at embarrassing mishears such as accepting a date, only to find the man had asked something quite different? Or when I delivered one of my famous non-sequiturs: “Mom, can you help me with an essay?” “That’s great, say hi to him for me.” (Below: Gael and “Hearing Husband” Doug)

WEB Gael HusbandAlmost every hearing loss joke is a variation on one or two basics—which the average person with hearing loss will hear about a thousand times in their lifetime. The first goes something like this: “What day is it?” “Thursday.” “Me too, let’s get a drink.” And I wish I had a dollar for every time I’ve asked, “Would you mind speaking up, I have hearing loss,” and the answer shoots back, “Pardon?”

We’re expected to laugh at all this?

Yes. Because it helps. (This is a good time to note that people with hearing loss are very good at laughing in group conversations. We laugh when others laugh and stop laughing when they do. Admittedly, that’s not quite the same thing as a real sense of humor, and our bluffing usually just gets us into more trouble. Just saying that we do know
how to laugh…)

Growing up in a small family—my parents, one sister and me—it was easy to understand dinner conversations because the kitchen table wasn’t big; anyone’s lips were only two dinner plates away. Even so, I would respond goofily to something I thought I heard, which amused everybody but me. We laughed a lot, en famille, because my father said the Lord loves a cheerful idiot and he felt we all qualified.

WEB Gael Hubby SonBut everything is funny, according to Will Rogers, when they happen to someone else. I can see the hearing people (especially the show-off types who claim they can hear a pin drop two counties over) almost implode as they try to suppress a smile or laugh at something we misheard. But later, when we’re out of earshot—which is usually not too far away—they tell these stories about us. Our communication faux pas and verbal boo-boos make us the friendly butt of funny stories: “I told Gael we were worried about our son’s shyness, and she said thank heavens no one in her family has sinus trouble.” Har-de-har-har. (Right: A pea between two pods—Doug, Gael and their son, Joel)

But hey, sometimes I laugh while the Hearing Husband doesn’t. He and I were living in a condo, waiting to move into our first house. He went to the lobby for some long-forgotten reason, and I closed the door after him and went back to watching a movie, which was loud. At some point, I might have vaguely wondered why he wasn’t back, but I was engrossed in the movie. At a momentary break in the noise, the phone rang beside me.

“Hello?”
“IT’S ME!”
“Oh hi, honey. Where are you?”
“In the LOBBY using the entrance phone!”
“But what…OMG…did I lock you out?”
“YES…YOU…DID! I’ve been back and forth between the apartment, pounding on the door, and back down here, and calling up for a whole bloody half hour!”

C’mon, don’t you agree this was funny? I mean, it’s not like I locked him outside in a snowstorm in his underpants! The Hearing Husband is also not amused with the consequences when I don’t hear the water running. Our two-year-old somehow flipped on a sink tap without me seeing or hearing it, and the resulting flood knocked out our phone line and electric garage door opener for 24 hours. And we’re just starting to laugh about the recent flood in our camper when I didn’t quite turn the tap all the way off before going to bed. Mopping up at 4:30 in the morning definitely ain’t funny and it didn’t help that the cat had refused to wade to his litterbox and “went” on the sofa.

Parenting with hearing loss can be challenging. I was engaged in an up-the-stairs shouting match with my teenage son; would he please get a move on and pack his darn hockey bag! I felt a tap on the shoulder; he was behind me, hysterical at watching me yell and gesture up the stairs to an empty bedroom, while he’d been answering me from the basement—where he was packing his darn hockey bag. I hate getting caught out like that.

WEB Podium GaelAbove: Gael gave convention-goers some humorous communication
tips at the Opening Session of HLAA Convention 2016 in June.

After a lifetime of hearing loss, this stuff still happens. Even with a commitment to good communication, hearing aids, and soon, a cochlear implant, I still have occasional bad hearing days when I seem to ask for repeats with every breath I take. On these days, I could swear that somebody had just passed a law that all citizens must speak as unclearly as possible with Gael Hannan for 24 hours. On these days, I’m a self-centered, walking pity party. But the next day, I can usually manage a whimpering smile at my day of bad hearing, and a couple of days later, maybe a weak ha-ha. Eventually, the embarrassment and frustration fade to black, leaving the funny bits intact. (Okay, Digby the dog did look hysterical with hundreds of dollars’ worth of hearing aid hanging from his hairy face.)

In most cases, our hearing loss is permanent; we get to keep it—forever and ever, amen—and if we don’t find a way to laugh, all we’ve got left is frustration and tears.
The late comedian Bob Hope once said, “I have seen what a laugh can do. It can transform almost unbearable tears into something bearable, even hopeful.”

WEB Canadian Group

Above: Gael with her fellow Canadian HLAA members before the banquet

It is absolutely possible to hone the hearing loss sense of humor, even if you think you don’t have one. The first step is understanding that you’re not the only one going through this; you share it with millions of people around the world. The next step is to connect with some of these people, either in person or on social media. Through HLAA and other consumer groups, you can share your heartbreaking and hilarious stories that turn out to be universal—only the names, dates and locations are different.

Hearing aid feedback when someone leans in close for a kiss? We’ve been there, done that. Spent a sleepless night in a hotel, staring at the alarm clock and clutching the Shake-Awake for fear of missing your flight? Yup, us too.

Had to figure out if your man really just said—at 5 a.m. when you weren’t quite awake—“Let’s get married” when you didn’t have your hearing aids in? Okay, maybe that only
happened to me (but lucky for him, I’m an ace speechreader).

Allan Klein, author of The Healing Power of Humor, wrote, “You may not be able to change a situation, but with humor you can change your attitude about it.” When hearing loss causes its inevitable daily communication breakdowns—some tiny, some big—we do what we can to get through them.

No, hearing loss isn’t funny—until you find the power to tell the joke on yourself. If you can’t, allow me to quote the famous t-shirt: “If you can’t laugh at yourself, I’ll be
happy to do it for you.”

We can laugh at our hearing loss. Just give us some time.

_____________________________________________________

Gael Hannan’s The Way I Hear It

WEB Gael Book CoverIn The Way I Hear It, Gael Hannan explodes one myth after another in a witty and insightful journey into life with hearing loss—at every age. Part memoir, part survival guide, The Way I Hear It is an insider account of the frustrations of communicating with hearing loss: pillow talk and other relationships, raising a child, in the classroom and on the job, hearing technology and the everyday things we like to do. Gael offers advice on how to bridge the gap between consumer and professional in order to get the best possible hearing health care, as well as tips for effective communication, poetic reflections and humorous, poignant stories from the people she has met in her advocacy work throughout North America. This is a book for people with hearing loss—but also for their families, friends and the professionals who serve them.

The Way I Hear It is available for ordering from FriesenPress and other online retailers in hard or soft cover, or as an e-book. E-book also available from iTunes, Kindle, Kobo, Nook and Google Play.

Check out her website at www.gaelhannan.com.

HLAA Member Gael Hannan is a writer, actor and public speaker who grew up with a progressive hearing loss that is now severe-to-profound. She is a past director on the national board of the Canadian Hard of Hearing Association and created The Hearing Foundation of Canada’s award-winning Sound Sense hearing awareness program for Canadian elementary students. As a passionate advocate for people with hearing loss, she writes a weekly column for HearingHealthMatters.org and delivers insightful, entertaining workshops across the continent for people with hearing loss, hearing health professionals, and the general public.





HLM Cover Feature: Carmen Iraida Franceschi

8 05 2016

Carmen Iraida Franceschi is our cover feature for the May/June 2016 issue of Hearing Loss Magazine! I design and photograph for this bimonthly publication of the Hearing Loss Association of American (HLAA).

Iraida sent me a friend request on Facebook awhile back without knowing that a) I was the designer and photographer for the magazine, b) I also have hearing loss, and c) that she lives just a few miles from me! I imagine the friend request came because of my connection to several of her other hearing-loss-related friends on Facebook. I had no idea who she was or where she lived. After our big “Snowmageddon,” I saw a photo she posted on FB of her townhouse front steps covered in massive amounts of snow. I thought, hmm…could she actually be in my neighborhood? I messaged her and learned she was in another townhouse subdivision just a few miles from me! That’s when I asked her if she would be interested in being interviewed and photographed for the magazine.

© Cindy Dyer. All rights reserved.

HLM MayJune 2016 Cover Small.jpg

Iraida Spread lorez

 

Carmen “Iraida” Franceschi: The Power of Perseverance

Interview by Cindy Dyer

Carmen “Iraida” Franceschi was born in Juana Diaz, Puerto Rico, the neighbor city of Ponce, located at the southern end of the island. She came to Virginia when she was 18 to live with an aunt and attend college at Mary Washington College in Fredericksburg, Virginia. Her hearing loss was diagnosed when she was in grade school and progressively worsened. When hearing aids were no longer effective, she discovered she was a candidate for cochlear implants. I sat down with Iraida and her mother, Coca, to talk about her hearing loss journey. It was a family affair as Iraida’s husband Michael and their two daughters shared their experiences, too.

Hearing Loss Magazine (HLM): When was your hearing loss first discovered?

Iraida:
I believe I was 7 years old. My first-grade teacher noticed that I was not really paying attention when she was calling me. My family was also thinking maybe there was something wrong with me, but they had doubts because I was doing so well. I was taken to the audiologist and they diagnosed my hearing loss. It was mild at first, but soon became progressive.

Coca: The doctor thought that the damage might have been caused by an antibiotic that she was given when she was a baby. He thought that the progression would end when she was in her 20s—but by that time she had lost a lot of her hearing.

HLM: Do you think you were compensating by reading lips?

Iraida: When I was a little girl I cannot recall if I was reading lips.

Coca: She was reading lips! She was always so attentive when she was speaking with somebody. She would always look directly at them. She began speaking early and was within the normal range as she grew older.

When she was about 2 or 3 years old, she communicated without problems with us, other kids, and adults. Then there were some changes when she was in kindergarten, but we attributed them to being distracted. As she grew older we realized that her hearing was not as good as it should be, especially when she sang a song (in Spanish)—it sounded like gibberish, yet she was truly enjoying the song. We were puzzled as to why she would sing the song in such a foreign way!

HLM: Do you still read lips even with cochlear implants?

Iraida:
Yes, I always do. It’s such a habit for me.

HLM: What was it like wearing hearing aids?

Iraida:
I did not like them. I wore them to school, but when I got home I would take them off. When I was with my family, I didn’t think it was that bad, but maybe they thought otherwise. The hearing aids were so noisy. I could hear all the background noise. Everything was so loud!

Coca: She was able to hear. I was able to speak to her if I spoke slowly. I didn’t have to speak louder because her problem area was with high-pitched tones.

HLM: Did your hearing loss affect your schoolwork?

Iraida: That’s a good question. When I was a little girl I was very fun-loving and did not take schoolwork seriously!

HLM: What did you study in college?

Iraida:
At the time, I was trying to get into accounting, but that was a complete shock for me because English became harder for me to understand.

HLM: Was that because the hearing loss was progressing?

Iraida:
Yes, but English was just harder. The college environment was much more advanced to me and I just could not keep up. I always wanted to understand hearing people. I was sad about that but I did not let it stop me from interaction.

Coca: When she moved to the United States she did not speak English at all. She moved here in mid-summer and in the fall she entered Mary Washington College. Her hearing was bad and was getting progressively worse. She was wearing hearing aids but they did not help. She asked the teacher to record all the lessons so that when I came home I could transcribe for her, but he would not allow it.

Iraida: For a while I had great hearing aids, but then I wanted to give up because the hearing loss was progressive and they weren’t working. Cheap ones, expensive ones—none of them were helping at this point in time.

HLM (to Coca): How did she get into college without being able to speak English?

Coca: She was able to understand and write English. It was just a problem when she got into a conversation. It was hard for her to keep up with the teacher who was speaking far away from her without looking at her. She was not used to the language at the time, so it was not easy. It was not just reading or writing in English—it was listening to someone speak English. That’s what made it difficult.

HLM: At what point did you know you were a candidate for cochlear implants?

Iraida:
I was 28 or 29. I was trying to find information online but there didn’t seem to be much available.

Coca: I remember once we were trying to check on some kind of device that you could wear just to watch TV. It was years ago and it was too cumbersome—there was a cable running from your head and you had to carry something in your pocket. We both said, ‘Forget it! When they invent something better, we will reconsider.’

HLM: At this point you began working. Where did you work?

Iraida:
I got a job at the National Science Foundation in Arlington, Virginia. I’m a program assistant. It’s mostly data input, coordinating programs, and running the panel. It is quite a workload. I have worked there for more than 20 years.

In the beginning I wore my hearing aids because I needed to be able to hear my supervisor and co-workers. Requesting closed captioning for upcoming meetings had to be done well in advance. Although I wore my hearing aids, I didn’t like the constant feedback noise. My co-workers could hear the squeal of the feedback and they would let me know. It seems the hearing aids were always squealing. There was always a problem with the earmold. They would shrink over time and I would have to go back and get a new mold cast.

HLM: Tell me about your experience with cochlear implants.

Iraida:
As my hearing loss progressed, information was hard to find. Then we got an invitation to a seminar on cochlear implants. I almost didn’t go. I was not that curious yet, and we were still researching options. I also didn’t know anyone who had cochlear implants. Now I know lots of people who do and we have a closed group on Facebook that is all about cochlear implants. Now I have thousands of friends that I can relate to!

Coca: It was always so disappointing when we tried to get information. There were no people to contact. How were we going to be able to pay for it? How were we even going to find out the cost? I had no idea whether insurance would cover anything, and not being able to find the answers to your questions was horrible. We tried calling our health plan providers and doctor’s offices, and found no data. No one could answer our questions. It was like there was a wall up and there was nothing available, so we decided to forget about it.

Iraida: I decided to go to the seminar at the last minute and drove all the way to Maryland where it was being held. When I got there I found there was a large resource of information. There were brochures and doctors and health insurance information. They guided me to a room with two large-screen TVs with closed captioning. Everybody was asking questions and they were answering them clearly and slowly. When the doctors took the stage to answer questions, I paid close attention because I planned to make an appointment with one of them. One of them got my attention. He was a doctor at George Washington University.

I’m bilateral now. I had the first implant for one year before getting one in the other ear. I just wanted to try it. In the beginning it was very difficult. It wasn’t what I expected. I was expecting sounds to be clearer. In the beginning sounds were more clutter and static, and at first voices sounded squeaky, like Donald Duck. It was horrible. When my implant was first activated, I was in shock. I told myself, ‘I made a mistake,’ but they assured me it would fade out and fade away. My brain would have to grow accustomed to it.

After six months I noticed that I could put the implant on, and if the room was quiet then it would be really quiet, but I could also hear when somebody was walking. I could hear the sound of footsteps from outside, or when somebody was opening the door, or locking the car. When I used the remote starter I could hear when my car’s engine was running, while I was in the house.

When I started to hear these sounds, so clear and so crisp and so wonderful, I thought, ‘I really want to have the other ear done!’ I wore a hearing aid on the other side but I felt that it was not working. The cochlear implant was so powerful that I had to keep checking the hearing aid and asking myself, ‘Is this on? Is the battery good?’ It was like the hearing aid wasn’t working at all, but it was.

I told my family that I wanted to proceed with a second cochlear implant and they suggested I wait. I got the second implant on January 23, 2013. The nurse pointed out that it was one year to the date from the first implant.

I believe that my second implant was easier because I knew the process of what was going to happen. Not every implantation is easy. Everyone’s experience is not the same. Other people feel differently about their second cochlear implant. They fit comfortably and there is no feedback. I hear more and I feel more confident.

HLM: How has having cochlear implants helped you at work?

Iraida:
Now that I am bilateral, I can participate in meetings even when there isn’t closed captioning available. My supervisor and co-workers have noticed that I am more productive now than I was in the past. My supervisor said, “I noticed that you appeared to be struggling with understanding what the staff was saying. Lately, I noticed that from a distance you can hear what I am saying to you. And you don’t ask me to repeat. Big improvement!”

I can turn on the telecoil, (or t-coil), which I can use in a meeting room with a hearing loop, but not many meeting rooms come with a loop. I love it because the sound streams straight to my ears and it is so easy to use.

I would like to look into an upgrade for my cochlear implants. I would like to know if it is possible and how much my insurance would cover.

HLM (to Coca): Did you notice a difference communication-wise after Iraida had the implant?

Coca:
Our dynamic has completely changed. Before, when we had a conversation and we were talking to other people, we would be looking at each other so that I could repeat what the other person said. I would speak slowly and in a tone of voice that she could understand, and then I would get lost in the conversation because I was not listening, I was talking.

She would miss a lot and we would have to repeat frequently. Or, we would say the same thing using different words and slowly, but we wouldn’t be able to retell every detail, and we had to make sure she was looking at us. Now, that’s all a thing of the past!

Iraida: They were speaking to me but sometimes I was not listening to what they were saying because I was watching my mother and not listening to the speaker.

Coca: Sometimes Michael, Iraida’s husband, would do some sign language. He could do spelling and a few words.

Iraida: Michael is not proficient in sign language and I only know a few words myself. I have taken sign language classes but only when I was an adult and thinking about getting a cochlear implant. I also have a co-worker who is deaf. He wears no hearing aids and uses sign language. It really is another language. It is a challenge to learn sign language. Some people don’t even want to try.

Coca: One difference in the dynamic with her children is that they used to lie to their father and say, “I spoke with Mommy but she didn’t hear anything.” They can’t do that now. They can’t get away with as much as they used to!

HLM: How hard was it to communicate with your husband?

Iraida: It was hard. Sometimes he was writing to me and sometimes he used sign language to spell out words. We could easily have miscommunication and misunderstandings. Sometimes our plans got broken because I would meet him somewhere at 5 p.m. and he would tell me, ‘No, we were supposed to meet somewhere else or at some other time.’ Sometimes I got details wrong.

I love to make fun of myself when I miss details like mispronouncing ‘chicken’ with an ‘sh.’ My children will mispronounce the word the way I say it just to tease me, and I laugh because I love it. It really doesn’t bother me at all. There are some other words, like ‘chocolate.’ I cannot pronounce ‘chocolate,’ and they say, ‘shock-o-late.’ Spanish words are easier to say than English words. English words have so many grouped consonants like ‘sh’ and ‘ch’ that are hard for me to pronounce. I have trouble pronouncing ‘s’ and ‘z.’

HLM: When you take your implants off, can you hear at all?

Iraida: No. I take them off at night when I go to sleep and when my husband comes home, I am unaware. He works the night shift and does not wake me. When my children were younger, they could be on a phone call late at night and I would not hear it. In fact, my husband was the one who got up at night for them when they were infants. I did not hear them cry. Taking them off allows me to sleep peacefully.

HLM: You had hearing loss at a young age. Did you notice a difference between listening to music with hearing aids versus cochlear implants?

Iraida: With cochlear implants, I had the beginning phase with trouble hearing music, but I do enjoy listening to music, so I’m happy I was able to adjust to it. Music sounds wonderful when I crank the volume up. I love to listen to music when I drive.

HLM: How is your hearing in noisy social situations?

Iraida: With hearing aids this did not bother me because I could hardly hear anything. I couldn’t understand anyone—not even my family, even if I read their lips. I would just sit there, eating and smiling.

With cochlear implants I hear more background noise but I am more restful. My family might still speak louder, thinking that I cannot hear them, but I can talk to them and participate with the group. I might miss a few things, but this is so much better than before. I can enjoy the conversations. I can follow along and interject comments into conversations. Some of my friends say that the noise in restaurants bothers them. They have a hearing loss and it bothers them, but it doesn’t bother me.

HLM: Tell me about your family.

Iraida: Sienna is 16. She loves softball, and is pretty good at it. She is pretty quick at everything. She studies quickly and does homework and housework quickly‚ so I have to check on her because she might miss something!

Delayna is 14, and the complete opposite of Sienna. She is slow and likes to take her time. She does not like to be rushed. She’s not as social as Sienna, but she has her friends.

My husband, Michael, is a forensic photographer with the FBI. He photographs evidence for use in court presentations. He used to be in Washington, D.C., but now works in Quantico [Virginia]. He recently received a medal for 30 years of service.

For some odd reason people think my husband is Hispanic, like I am, but he’s not. He’s from Pennsylvania, and does not know any Spanish. He listened to cassettes on Spanish so he could talk to me when we first met.

I had an aunt who is married to someone in the Navy and she lived in Fredericksburg, Virginia. I came to Fredericksburg to go to college, and when my aunt moved to Italy, her friends threw a farewell party. Michael and his then-girlfriend came to the party. They were not happy at the time and constantly arguing. He spoke with me at the party, and after they broke up I started going out with him. He got my phone number from his girlfriend, who was actually a friend of mine!

HLM: What are your favorite sounds? Least favorite?

Iraida: When I wore hearing aids, I was always dropping things and couldn’t hear those sounds. Then I would have to backtrack through the house to find the items. With the cochlear implants I hear these types of sounds right away. Now I am careful about putting the dishes away quietly since I can hear them better. I used to put them away loudly because I did not notice the sound! When I wash dishes, the sound of water seems very loud.

I don’t like the sound of aluminum foil crinkling. I make peanut butter and jelly sandwiches for my daughter every morning before school and wrap them in aluminum foil, and I find that sound is so loud!

The tick-tock of a clock was one of the first sounds I recognized when I was first implanted. I was sitting in my computer room doing audio rehab, and I paused to listen to the cutest sound—it was the clock on the wall.

Every morning I hear the birds and they are loud, but I enjoy them. I like the music of the 80s, maybe because during that time I was listening to music the most. I love hearing warning beeps from the stove, alert beeps from the pushing of buttons at the gas station, or any machinery—even the sound made by pushing buttons in the checkout lane at the grocery store. I love all those beeping noises. The washer and dryer also make warning noises, and I am amazed at them all.

I love my cochlear implants. They are my gems now. The most wonderful thing about it all, besides being able to hear the birds and crickets, is being able to fully participate in silly and happy chatter with family.

__________________________________

FAMILY PERSPECTIVES

MICHAEL, Iraida’s husband
We started dating each other around 1990. Although she couldn’t hear, I noticed she was a good listener. I remember, at first, we would write on napkins or scrap paper in restaurants to communicate, which seemed sufficient at the time when life seemed to
go by at a slower pace.

As our relationship progressed, we of course needed to communicate better, so we learned some basic American Sign Language. As technologies such as closed captioning, instant messaging, and texting improved, so did our ability to expand into a more interdependent relationship where we could make choices together rather than just using my best judgment.

Deciding to get a cochlear implant was a big decision for both of us, but I confess my biggest incentive for her to do it was so I didn’t have to listen to feedback from her hearing aids!

Now with the latest technology, Iraida is a bilateral cochlear recipient and together we experience the good and the bad issues resulting from her immensely improved hearing.

I remember at first she would ask, “What’s that noise I’m hearing?” and I would have to concentrate to try to isolate the many different sounds we (as hearing people) ignore on a daily basis. Finally, I would say it’s a bird or the kids playing outside. The really amazing sounds she would share were the fizz from a soda or the subtle variance of noise as you passed parked cars from the passenger side windows—“whoosh, whoosh…” she would say, like a child experiencing something for the first time.

These little highlights of hers helped remind me to stop and smell the roses, and not block out all the wonderful everyday senses we tend to take for granted.

Over the years, I have relied upon my hand gestures and exaggerating my pronunciations slightly to compensate for my soft-spoken voice. But now my wife will slap my hands away if I make a sign to remind me that she wants to practice her hearing abilities without all of the tools and aids we’ve developed through time (so far). At which point, I will jokingly say to her: ‘I liked you better before’—and a good hearty laugh follows.

SIENNA, Iraida and Michael’s daughter, age 16
The benefits that came from my mom getting cochlear implants outweighed the risks, and it was life-changing. Before her implants, it was a struggle to communicate with her when my sister or I needed something, and every day there was something we needed, all the time. However, at the time I didn’t know anything could be done to help the situation, and honestly I didn’t think that an implant could help her hearing. It just seemed too good to be true. I was also a bit hesitant about her going through the surgery because I felt it was risky and there is always a chance something could go wrong. But she explained that the doctor told her the surgery was easy, and that she wouldn’t even have to stay in the hospital overnight.

Thankfully, everything went perfectly and I noticed my mom’s hearing coming back when she would get upset with me for making too much noise in my room, or for placing silverware in the sink too loudly and carelessly. In the past, she would never point this out, and it amazed me that she thought it was now too loud!

When my mom is driving me places, she and I can now sing along to the lyrics of songs that I like to play on my iPhone. This is something I treasure because it truly is so much fun! She doesn’t always know the music from my generation, but she has an app that recognizes the song and plays the lyrics, and this, too, is amazing. She has now added some of my favorite songs to her own library on her cell phone—gotta love that!

DELAYNA, Iraida and Michael’s daughter, age 14
Now that my mom has cochlear implants, conversation with her has been much easier. I don’t have to repeat much, unless it’s an unusual or a rarely used word. In the past, I had to repeat myself constantly. We couldn’t really finish our conversation because it was so frustrating for me, especially when I needed her help with my homework back when I was younger. The teachers were teaching me something differently and my mom had her own way of doing schoolwork. Her methods were different, and I tried to explain the way my teacher wanted my schoolwork done, but it was almost impossible to express that. I am so glad my mom has cochlear implants now, and every thought that we communicate is a breeze!

Something funny that she now does when I am talking to her is that she doesn’t stop or pause to look me in the face, as she wants to continue her errands in the kitchen. I kind of want my mom to look at me. Yet, she says she is practicing, and for me to continue talking. It’s a little unusual at times, but it’s really fun to see that she did get my message when she repeats what I had just said. That’s so amazing!

Cindy Dyer designs and photographs for Hearing Loss Magazine. Her photography has been featured in Shutterbug Magazine, The Washington Post and in the Learn & Explore series on nikonusa.org. She is a twice-published USPS Stamp Artist, with two series of Forever stamps—Ferns (released in 2014) and Water Lilies (released in 2015). See more of her work at cindydyerphotography.com, cindydyerdesign.com and on her blog at cindydyer.wordpress.com.





Design Studio: Infographics Brochure

23 02 2016

I recently designed a four-page Hearing Loss Facts and Statistics brochure for the Hearing Loss Association of America (HLAA). Infographics are all the rage in the design world now and this is the first time I’ve created several in one piece. The top panel is the cover, middle panel is the interior spread, and the last page is the back cover (featuring HLAA members Mark and Sunny Brogan).

You can download the pdf on HLAA’s website here: http://www.hearingloss.org/content/brochuresdvds

Facts&Statistic WEB





Hearing Loss Magazine: 2014 Recap

6 01 2015

I design and photograph for the bimonthly Hearing Loss Magazine (HLM). Here is a recap of the issues published in 2014. Hearing Loss Magazine is published by the Hearing Loss Association of America.

HLM JanFeb 2014The January/February 2014 issue focused on hearing loss in the workplace, with feature articles such as Career Success After Hearing Loss: Finding and Refining Your Path by David Baldridge; Congratulations, You Have an Interview! What Now? by Mary Clark; The Workplace and the Law by John Waldo; Workplace Behavioral Responses to the Law by David Baldridge; A Midwestern Grocery Store Lends a Hand by Suzanne Roath; You’re NOT Fired! Technologies for Workplace Success by audiologist Brad Ingrao; HLAA Employment Toolkit by Lise Hamlin; Hiring Employees with Hearing Loss—What’s in it for Employers? by Valerie Stafford-Mallis; and Hearing Loss is Big Business by Bettie Borton. HLAA member Chelle George was our Seen & Heard profile. I photographed Chelle at HLAA Convention 2013 in Providence, R.I. Read Chelle’s profile here.

HLM March April 2014The March/April 2014 issue was our Convention sneak preview edition, featuring Nancy Macklin’s Convention feature, The Live Music Capital of the World Awaits You. Also in this issue: author Katherine Bouton’s Tinnitus is Big Business; I Might Not Hear Everything, but I’m Still Listening by S.R. Archer; Hearing Lost, Inspiration Found, a profile of theater artist and acoustic guitarist Randy Rutherford by author John Threlfall; HLAA Fights for Consumer Rights by Lise Hamlin; Grandma Doesn’t Know What We’re Talking About by Joyce Hagerman; and Waiting Rooms—Why Does it Have to Be So Hard? by Dana Mulvany. Convention 2014 was held in Austin, Texas on June 26-29 at the Renaissance Austin Hotel. I met and photographed pianist Nancy Williams at the Convention. She was the September/October 2014 cover feature.

HLM MayJune 2014I photographed the Pawlowski family for our May/June 2014 issue. The main feature was Walk4Hearing: It Takes a Family by Ronnie Adler. Within this section were short essays by Andrea Versenyi (My Mother’s Social Isolation), Leslie Beadle (Walking in Mom’s Shoes), Lydia Riehl (A Father Inspires His Daughter to Study Audiology), and Katherine Pawlowski (Why I Walk). Other features included Just Like Me, a profile of Katherine Pawlowski by Julie Fisher; Austin, Here We Come! by Nancy Macklin; and Are You Computer Savvy? If Not, Join the Club! by Joel Strasser.

(Cover photo, from left: Alex, Katherine, Megan (mom), Nicholas, Sebastian (dad), and Elizabeth. Eight-year-old Katherine is HLAA’s first Walk4Hearing Ambassador.) Learn more about HLAA’s Walk4Hearing here.

HLM JulyAug 2014I photographed artist and portrait painter Timothy Chambers in the Virginia countryside last spring and interviewed him for our July/August issue. Following in his father’s footsteps, Timothy Chambers became a full-time portrait painter. Even a diagnosis of Usher syndrome at age 30 didn’t keep him from pursuing his passion for painting. You can read my interview, Timothy Chambers—Living a Creative Life with Usher Syndrome, here. Learn more about Timothy and see his beautiful work on his website here. He offers painting instruction in the form of plein air field excursions, ArtShops and online teaching with IguanaPaint. Learn more here and here. Also in this issue: Saving Vision for People with Usher Syndrome by Ben Shaberman; A Newborn Baby and a Cure for Hearing Loss—Umbilical Cord Blood Stem Cell Repair by Jim Baumgartner and Linda Baumgartner; Understanding the Fundamentals of the Audiogram … So What? by audiologist Larry Medwetsky; It Don’t Mean a Thing if it Ain’t Got that “Bling” by Anna Bella and Suzanne D’Amico; Hearing Aid Coverage Under Medicare—We CAN Do It! by Lise Hamlin; and Unwrapping My Passion Once Again by barefoot skier Karen Putz. HLAA member Molly Corum was our Seen & Heard profile in this issue. I photographed her at HLAA Convention 2011 in Washington, D.C. Read her profile here.

HLM SeptOct 2014HLAA member Barbara Chertok interviewed Nancy Williams, pianist, author and advocate, for the September/October 2014 issue. Nancy Williams is the publisher of Grand Piano Passion, an online magazine. I photographed Nancy at HLAA Convention 2014 in Austin, Texas, this past June. Visit Nancy’s website here. Read Barbara Chertok’s feature, Music to My Earshere. Also in this issue: A Listening Profit by Nancy M. Williams; Audiometric Test Procedures 101 by audiologist Larry Medwetsky; HLAA Public Policy and Advocacy Agenda by Lise Hamlin; Understanding the Terms—Culturally and Audiologically by Barbara Kelley; Accessibility Drama Has a Happy Ending by Paula DeJohn; and Reflections of an Audiologist with Hearing Loss by Mark Ross. HLAA member Meredith Segal was our Seen & Heard profile. I photographed Meredith at the HLAA Convention 2011 in Washington, D.C. Read her profile here

HLM NovDec 2014In the November/December 2014 issue of Hearing Loss Magazine, Barbara Kelley profiled Alice Marie (Ahme) Stone, wife of Rocky Stone, who founded HLAA (then known as SHHH, Self Help for the Hard of Hearing) 35 years ago. I photographed Ahme at her home in Bethesda. In Barbara’s article, The “Intrepid” Alice Marie Stone, I learned lots of things I didn’t know about Ahme, Rocky, his career with the CIA and family life on the road. It’s a really fascinating read! Read Barbara’s interview with Ahme Stone here. Also in this issue: Hearing Loss: Working Toward a Solution by Shaina Nishimura; DuPont Displays—A Great Place to Work by Tara C. Stewart; Transitioning from High School to College: Helpful Hints by audiologist Larry Medwetsky; Employment and Hearing Loss: A Case Study by David Gayle and Lise Hamlin; To Thine Own Self Be True by Valerie Stafford-Mallis; Applying for Social Security by Lisa Giorgetti; and At 84, I’m Tuned In by Eli Weil. HLAA member Candace Meinders was our Seen & Heard profile for this issue. Read her profile here.

Join the Hearing Loss Association of America!
Do you have a hearing loss or know someone who does? Consider membership in the Hearing Loss Association of America. All memberships include discounts on hearing-related products, convention and special event early bird discounts, AVIS and Alamo car rental, and the award-winning Hearing Loss Magazine. Sign up for membership here.





Seen & Heard: Candace Meinders

6 01 2015

Candace Meinders was our Seen & Heard profile for the November/December 2014 issue of Hearing Loss Magazine, published bimonthly by the Hearing Loss Association of America. I photographed Candace at HLAA Convention 2011 in Washington, D.C.

S&H Candace Meinders

CANDACE MEINDERS  St. Paul, Minnesota / Born June 5 in Granite Falls, Minnesota

MY HEARING LOSS… I had high fevers when I was 6, but my parents didn’t take me to see a doctor until I was 13 years old when it was diagnosed.

HOW I LEARNED ABOUT HLAA… In 1994, my sister, Linda, encouraged me to become a member and get the magazine.

THE BEST GIFT I EVER RECEIVED WAS… a cochlear implant…now I can really hear!

HLAA CHAPTER MEMBER… Twin Cities Chapter in Golden Valley, Minnesota

WHEN I GREW UP, I WANTED TO BE… a librarian. I remember asking my school librarian about her job as a senior in high school.

WORKING NINE TO FIVE… mailroom clerk, janitor, library clerk, accounting clerk, data entry operator

FAVORITE BOOKS… anything written by Joyce Meyer

THE LAST BOOK I READ WAS… One Nation by Dr. Ben Carson.

I AM… honest, quiet and strong willed.

MY LONG-TERM GOAL IS… to be happily married.

MY SHORT-TERM GOAL IS… to vacation in Germany or Hawaii.

SOMETHING I HAVE IN MY HOME THAT MOST PEOPLE DON’T… International Poet of Merit Award presented to me by the International Society of Poets

MY BIGGEST PET PEEVE IS… people smoking around me.

THREE FAVORITE POSSESSIONS… my gray Tabby cat Sebastian, my Bible and my iPhone

MY MOTHER TAUGHT ME… that I can do anything I set my mind to.

MY FATHER TAUGHT ME… to not forget to go to church.

I HAVE A LITTLE-KNOWN TALENT FOR… research. I’ve advanced so far in my genealogy research that I now need to visit Germany to research Ostfriesen culture.

I HAVE A WEAKNESS FOR… ice cream.

THE KINDEST THING ANYONE EVER DID FOR ME… When I was 24, my penpal from Florida sent me a big bouquet of flowers for Christmas. I was so touched because I had never received a bouquet of flowers.

GREATEST THING SINCE SLICED BREAD… cochlear implants

MY GREATEST ACCOMPLISHMENT… my short-term mission trip to Haiti in 1991

I WANT TO BE REMEMBERED… as a Christ follower.

I love the Seen & Heard profiles in Hearing Loss Magazine. Attending HLAA Convention allows me to explore different cities.

 





The Intrepid Alice Marie Stone

3 11 2014

In the November/December 2014 issue of Hearing Loss Magazine (published bimonthly by the Hearing Loss Association of America—HLAA), Barbara Kelley profiles Alice Marie (Ahme) Stone, wife of Rocky Stone, who founded HLAA (then known as SHHH, Self Help for the Hard of Hearing) 35 years ago. I photographed Ahme at her home in Bethesda a few months ago. I learned lots of things I didn’t know about her, Rocky, his career with the CIA and family life on the road. It’s a really fascinating read!

Do you have a hearing loss or know someone who does? Join the Hearing Loss Association of America! www.hearingloss.org

Photo © Cindy Dyer. All rights reserved.

Ahme Stone Cover

The Intrepid Alice Marie Stone
by Barbara Kelley

After 35 years, in her first interview, Alice Marie (“Ahme”) Stone, wife of Founder Rocky Stone, talks about the early days of the organization as well as some never-written-about-before stories about life with Rocky. Today, Rocky is folklore in both the Central Intelligence Agency (CIA) where he spent his first 25-year career, and folklore in the organization we now call HLAA. What you are about to read has been declassified, but such is the stuff spy thrillers are made of. Ahme is part of the folklore of which we speak.

In the book America’s Great Game: The CIA’s Secret Arabists and the Shaping of the Modern Middle East (2013 Basic Books) by Hugh Wilford, the author discusses a case that involved Rocky and Ahme Stone in Syria. Wilford describes Ahme as the “intrepid Alice Marie Stone.” We’ve always known Rocky was fearless, undaunting, unflinching, adventurous, heroic, dynamic, spirited, indomitable, but Ahme too?

She’s a Texan having been born in San Antonio on September 11, 1927, and grew up along the Gulf Coast in Corpus Christi. When asked if we could interview her for this article, Ahme said that she is neither talkative nor introspective. Ahme is self-effacing and her ways are genteel but anyone who knows her appreciates her sincerity, depth, faith, sense of humor, and sees her love for people, the organization, Rocky, and her family.

It would be impossible to talk about the founding of this organization without also talking about Ahme Stone. (Pronounced “Ahh-me” from a nickname given to her by her toddler brother Joe who couldn’t enunciate Alice Marie.)

In 1978, a year before Rocky founded Self Help for Hard of Hearing People, now known as the Hearing Loss Association of America, Ahme had just earned her master’s degree in pastoral ministry from Trinity University in Washington, D.C. She was completing an internship at Walter Reed Army Hospital and was about to embark on her career at the National Institutes of Health (NIH) in Bethesda, Maryland, as a Catholic chaplain. With her quiet strength, calmness and faith, she ministered to those who were terminally ill and earned respect for her work.

Once asked if this ministry made her feel sad, she said, “But I get to see so many miracles.”

One of her daughters said about her, “I don’t know how to capture the essence of her grace and compassion.” Rocky put it another way, “Ahme is in love with God.”

Ahme said, “I loved the work, I felt I was fortunate to have the opportunity. It’s something I had wanted to do for a long time.”

The Start of a National Organization for People with Hearing Loss
Rocky had recently retired from the CIA in 1975 after earning the Agency’s highest award, the Distinguished Intelligence Medal. Along with a bulky body-worn hearing aid attached to his shirt, he was an expert speechreader. Foreign diplomats didn’t believe he was deaf, the term used in those days. One Soviet thought his hearing aid was a recording device.

He told Ahme that he wanted to start an organization for people who didn’t hear well. He said they, like he, were “between two worlds”—neither deaf nor hearing. He characterized hearing loss as “an invisible condition” and concluded that no organization existed that focused specifically on people who were not deaf or fully hearing; but, rather, hard of hearing. All the services, organized groups and any available literature focused on people who were deaf and mostly used sign language. There was nothing for people who were hard of hearing and wanted to use technology to function in a hearing world; so he decided to start a new organization called Self Help for Hard of Hearing People (SHHH).

What did Ahme think when he told her about starting a new organization? She said, “I thought it was a good idea but I had no idea exactly what he had in mind. It was clear he had been thinking about it for a long time. ”

In November 1979, Howard E. “Rocky” Stone founded SHHH.

What was Ahme’s role in the nascent organization that began in the family room of the Stone home in Bethesda, Maryland? She says, “I saw Rocky’s colleagues from the CIA coming to help. They all took a job—financial, public relations, administrative support. I basically stayed out of the way because I had a full-time job. On the occasions I was home, I would enjoy seeing friends and people from the Agency come and go. Even my mother [Helen Mueller], who was hard of hearing and struggling, folded letters and stuffed envelopes. My laundry room was full of boxes of journals. Our family room which was once the recreation room for the whole family was turned into the SHHH headquarters.”

Ahme and his colleagues were familiar with Rocky’s dogged style. She says, “One time, our friend and colleague, Myra Johnson, was having tea with me in the kitchen, taking a break so we could chat. Rocky found us and nudged Myra to get back to work in the ‘office.’”

Ahme saw the organization move from their home to a small office in Bethesda where Rocky served as the first executive director, unpaid with a staff of four who were also unpaid. (Rocky never took a paycheck as the executive director.) Ahme was deeply impressed with the dedication of this small staff. She remembers Patricia Clickener, the first Board president who took a leave of absence from her executive position at the Chicago ad agency, Leo Burnett, and came to volunteer full time for 20 months. There were countless others over the years. She found it almost unbelievable that people would travel at their own expense from as far as California and Washington to serve on a volunteer Board of Trustees.

She said, “I felt we should at least give them dinner if they were going to all this expense and effort for this organization.”

This was the beginning of Ahme’s hospitality and the opening up of their home with years of Board dinners on the nights before meetings began. Ahme attended all the Board meetings for many years.

Most of all, Ahme gave Rocky emotional support. She had been married to Rocky for nearly 30 years at that time and knew he felt passionately about helping other people. This was the time when self-help movements were in full bloom. Rocky used that template to provide people with reliable information to enable them to help themselves; then, in turn, to help others with hearing loss.

Rocky, many times over, credited Ahme with choosing the location of the national headquarters office in Bethesda. Rocky had found an office with no access to public transportation. Ahme vetoed it and recommended finding a place near the Metro. She said, “People can get to you and you can get to Capitol Hill.”

Ahme says, “At that time, hearing loss wasn’t considered a medical condition. Now they screen babies for hearing loss when they’re born. How far we have come in 35 years!”

Those who knew Rocky also knew he had a great intellect and keen insight into human psychology, that’s what made him successful in the CIA. He knew others weren’t so fortunate with the same job opportunities and he wanted to let them know that there were others with hearing loss, that it was not something to be ashamed of, and that they could live successfully with hearing loss.

Going Back—Some Fateful Meetings
In 1947, Ahme met Rocky at the University of Southern California (USC) where she earned her bachelor’s degree in fine art. Rocky was a teaching assistant in one of her classes. Ahme took her dog to class and Rocky couldn’t help but notice. They made a few quips back and forth. Ahme remembers getting a poor grade in the class and not feeling she deserved it, she took her protest to the professor. It turned out the professor didn’t give her the grade, it was Rocky who did. Let’s say Rocky had met his match. Did he know it? We are not sure. Did Ahme know it? “No,” she says.

After Ahme graduated from USC in 1948, she returned to Corpus Christi and wanted to travel the world. She remembers, “There were no jobs in Corpus Christi and I didn’t want to spend the rest of my life behind a typewriter, besides, I couldn’t even type very well.”

Ahme’s father, Joe Mueller, advised her that she didn’t have to spend her life behind a typewriter, but it would get her foot in the door.

Ahme had other ideas. She wanted to go to Germany or Japan during the Allied Forces occupation in the aftermath of World War II. Her friend told her the CIA was hiring and Ahme replied to her friend saying, “What’s the CIA?” It didn’t matter what it was, it was a chance to go to Washington, D.C. for an interview and a chance at living her dream.

Ahme recalls, “Daddy said to go to Washington, take a good look around and if you don’t like what you see, come on home—you’re always welcome here.”

She had the interview which included the dreaded typing test. She recalls typing about 20 words a minute and losing hope. The interviewer told her, “Your typing won’t set the world on fire, but that’s not what we’re hiring you to do.”

Meanwhile, Rocky graduated from the University of Southern California and went to the Johns Hopkins School of Advanced International Studies in Baltimore on a scholarship.

Now in Washington, D.C., and with a new job, Ahme ran into Rocky again. This time it was 1950 at the USC International Students alumni meeting at the iconic Willard Hotel in Washington, D.C. Ahme said, “I was so happy to see a familiar face so I said hello and Rocky replied, ‘Oh, I remember you, you’re the girl with the dog.’”

Then again, they met at the CIA located at that time in D.C., next to the Lincoln Memorial Reflecting Pool. It was 1950 and Ahme worked the Czechoslovakia desk on the intelligence-gathering side while Rocky was on the operational side of the CIA. Here was another fateful meeting that eventually resulted in their 53-year marriage, or should we say their 53-year adventure?

Ahme Stone…Intrepid?
When Rocky was trying to get the word out about the new organization, SHHH, it was often his ventures as a CIA operative that would catch the attention of the media. Renowned journalist David Ignatius wrote a story on the front page of The Wall Street Journal about Rocky’s career in 1979. Rocky agreed to the interview if Ignatius would mention SHHH. At the end of the article, the author included a small paragraph on the inception of SHHH. Hundreds of people from all over the world wrote for information for help with their hearing loss.

Ahme was very much part of the CIA days that caught the attention of many. That’s why we can’t talk to Ahme without going back to the days before SHHH. The “intrepid Alice Marie Stone?” Let’s see about that.

Iran
Rocky and Ahme were both working for the CIA when they were first posted to Iran during the time of the overthrow of Prime Minister Mosaddegh. Rocky was at the center of many important international events and this was one of them. She recalls, “During this time, Rocky helped orchestrate the coup that restored Mohammad Reza Pahlavi to the Iranian throne.”

Rocky recalled later buttoning the uniform of General Fazlollah Zahedi, the CIA’s man in the Iranian military and the Shah’s newly designated prime minister. The general was too nervous to dress himself. Ahme, his young wife, was sitting calmly in a rocking chair in their home. She had a pistol hidden under her knitting as she guarded Ardeshir Zahedi, the general’s 25-year-old son and a friend of the CIA. The younger Zahedi, in later years, would serve as the Shah’s ambassador to the United States.

Sudan
“After Iran,” she continues, “We were assigned to Sudan in 1955 where we arrived with a three-month old, an 18-month old, and a two-and-a-half year old.”

While the Middle East was an active spot, Rocky was posted to the Sudan (North Africa) where on a trip to Kenya, the Stones experienced Mau Mau uprising by native Africans against English colonial rule (c. 1953). Ahme said the Kikuyu [groups of Mau Mau] were slaughtering the colonials and it was a very dangerous time to be there.

Ahme talks about the time she was sent from Sudan to Cyprus for a medical checkup. It was during the Suez Crisis in 1956 in the Middle East and planes were not permitted to fly from Beirut. However, she went to Athens and got special permission to fly on a military plane. It turned out to be a seven-hour flight on a cargo plane. Ahme was fitted with a parachute and said, “I was instructed on how to use it if we had to ‘ditch in the desert.’ The pilot told me to look for shade and water as I was going down. I told him if we had to go down, I would prefer it be the Mediterranean.”

Syria
Rocky’s next posting was to Syria in 1957. Rocky went to Syria while Ahme, pregnant with their fourth child, stayed with the children temporarily in Beirut, Lebanon, until their living quarters were ready. Here she lived above the notorious, high-ranking member of the British intelligence, double agent, Harold “Kim” Philby. He was working with the Soviet Union at the time and was on the last leg of his escape from the British authorities as he was on the run to defect to the Soviet Union.

Ahme recalls finally getting to Syria, getting settled, and was there about a month when she called Rocky at his office to tell them their phones were connected. During the call, she heard the phone line being cut. She remembers vividly a Syrian government official coming to the door in a white dinner jacket with a red carnation telling her that he would escort them to the border. She recalls fighting back the tears saying, sarcastically, “You’re too kind.” Ahme now says, “I loved Syria, we just got unpacked, got the last picture hung on the wall and we had to leave…in a hurry!”

They went to a hotel on their way out of the country and were told not to be too conspicuous. She recalled letting the children bring their pet bunny with them for comfort. The bunny escaped in the hotel lobby and caused a ruckus. So much for a low profile.

Pakistan and Nepal
After the Sudan in Africa the Stones went to the east with posts in Karachi, Pakistan and Kathmandu, Nepal. In Karachi, they were reacquainted with Prime Minister Bhutto, who was a classmate of Rocky’s at USC, and his family. The Stone children went to school with the Bhutto children. Jolie Stone Frank was a classmate of Benazir “Pinkie” Bhutto who became the prime minister of Pakistan and the first woman in history to lead a Muslim nation; she was assassinated in 2007. In Nepal they met Sir Edmund Hillary—the first to climb Mount Everest—and his American team which included Barry Bishop, Tom Hornbein, Willi Unsoeld and others.

Amidst all her activities as a mother and wife to a CIA operative, she volunteered to dispense milk to children in the slums and took care of people with leprosy. In Nepal, she recalls with a smile the memories of teaching people with leprosy how to sew. They made children’s clothes and sold them for income. She smiles as she recalls repeatedly telling them in Nepali to “undo it” because they kept sewing up the armholes. While some people stationed in Nepal didn’t like it because it was isolated geographically, Ahme loved the location and the Nepalese people. She said “it was delightful to be in the mountains.”

In June 1966, the Stone family returned to Washington, D.C., with Rocky being medically evacuated with a rare strain of malaria.

The next hot spot was a year in Vietnam where Rocky and future CIA Director William Colby were stationed. Ahme and the family couldn’t accompany him. Rocky briefed then-Secretary of Defense Robert McNamara that the war could not be won. He then developed contacts high in the North Vietnamese military and those relationships of mutual respect led to the Paris peace talks.

After that, Rocky was stationed in Washington, D.C., as the head of the Soviet Block Division leading the Agency’s intelligence gathering activity against the Soviets around the world.

Rome
In 1971, they went to Rome, Italy, which was important because a new global war was underway and Rome was the epicenter. International terrorists, the Red Brigade, Baader-Meinhof, Black September and other terrorist organizations were springing to life and it was important to identify and contain them. There were many attacks—at Rome’s Fiumicino Airport, at Tel Aviv’s Lod airport, and at the Munich Olympic Village. During this time, Ahme sadly recalls the tragic assassination of their friends and colleagues in Khartoum, Sudan—Cleo A. Noel, Jr., U.S. ambassador to Sudan, and George “Curt” Moore, foreign service officer, who were both murdered by the Black September Palestinian terrorist group. Both were classmates of Rocky’s at USC.

While in Rome, Rocky’s last overseas assignment, and one of Ahme’s favorites, she recalls that the wives didn’t have their usual obligations because the station chiefs wanted everyone to enjoy Rome. So she went to see Fr. Bernhard Häring, a Catholic theologian and friend of the family, seeking advice on what she could be doing. He asked her what she would like to do and Ahme blurted out, “I want to become a chaplain.” Fr. Häring assured her that she could do it, gave her advice, and she began her studies at the Pontifical Gregorian University and the Regina Mundi Pontifical Institute in Rome.

Ahme accompanied Rocky on all his overseas tours except for the one to Vietnam. It has been noted that each and every spot where they lived was strategically important from an intelligence perspective for the United States.

When asked if she was ever afraid, Ahme hesitated a little then said, “No, we just knew we had to be ready to leave a place at a moment’s notice. Our evacuation suitcase was packed the whole time in the early years with baby gear and Carnation Milk.”

Few mothers would be prepared to face this harrowing possibility. Was it her training? Her faith? Her youthful naiveté? Her intrepid-ness?

The Next Adventure
After Rocky retired from the CIA, he got immersed in the topic of hearing loss. “He went to Congress, worked with the National Council on Aging and anyone he could to get to understand the issues,” said Ahme.

Because of Rocky and members of the early organization, the term “hard of hearing” was inserted into the lexicon for the first time on a national level. The term hard of hearing at the time was critical to creating awareness about millions of people who needed communication access other than a sign language interpreter. For the first time, academic and consumer literature began to address what it was like to be hard of hearing.

Ahme says that Rocky was most proud of serving people with hearing loss when the Americans with Disabilities Act of 1990 (ADA) was passed. He and SHHH members advocated for the landmark legislation. The ADA celebrates its 25th anniversary next year. One outcome of the ADA was that communication access guidelines in public places were created both for people who are deaf and for those who are hard of hearing. The law requires “reasonable accommodation” and that can mean different things depending on the person’s needs and the situation. It provides for technology options in addition to sign language interpreters.

Rocky Stone was appointed by President Reagan to the Access Board who wrote the regulations for the ADA. If it weren’t for Rocky Stone and SHHH members at the time who gave critical input, there would be nothing in the law other than sign language and captioning. The law puts people with hearing loss on equal footing with others in the workplace and public places.

When asked what Rocky might say today about the work of the organization, Ahme says, “He might say our work is more critical than ever. When I ask for accommodations I am still offered a sign language interpreter. Then, I ask for captioning and they don’t always have it.”

Ahme now counts herself among the 48 million people in the United States today with hearing loss.

Ahme knows that people find their information on the Internet, unlike the early days of the organiza-tion. But she says people can’t rely totally on the Web.

“People miss out on a lot if they don’t go to chapters where people are so happy to be there and meet others like themselves. I know the chapters take a lot of work and people are so busy these days, but chapters are important.”

Rocky retired as executive director of SHHH in 1993. Ahme retired from her work at the National Institutes of Health in 1997 to travel full-time with Rocky for his various “posts,” this time associated with hearing loss, not the CIA. Rocky served as president and board member of the International Federation of Hard of Hearing People, of which HLAA is a member organization, and this required extensive travel. Ahme enjoyed these travels with him. In the years after his retirement, Rocky lost his sight to macular degeneration and had received a cochlear implant because he could no longer use his vision to speechread.

Rocky passed away on August 13, 2004, at age 79. Since then, Ahme volunteered at the Father McKenna Center in Washington, D.C., serving breakfast and lunch to homeless men. She keeps up with HLAA members and travels with her children and grandchildren. Her favorite annual trek is to the HLAA Convention where she sees old friends and meets new ones. What stands out about the convention? “Everyone has a smile on the whole time they are there,” she says.

During the annual convention Ahme presents the HLAA Alice Marie Stone Family Involvement Award during the Awards Breakfast and Ceremony to a family member of a person with hearing loss who supports their loved one in extraordinary ways. A recipient herself, the award is named and modeled after her support of Rocky and her dedication to the organization and to people with hearing loss. Ahme also presents the Howard E. “Rocky” Stone Humanitarian Award to a former Board member who exemplifies the philosophy and vision of Founder Rocky Stone.

The Stone Team
Yes, Rocky and Ahme have a background of intrigue, danger and drama. But somehow this led to their life’s work of bringing people with hearing loss together to find solutions.

We have a lot to thank Rocky and Ahme for. Not only were they partners in the national security of our country, they were partners in the formation and growth of the organization we now call HLAA. They have always said our organization is about people. The mission is still the same. All the information, education, support, advocacy, and the use of technology, can help the person with hearing loss to get along better, stay connected, work, and be part of a mainstreamed community.

Ahme is quick to add that many have worked to make HLAA the organization it is today. She says in addition to Rocky and the family, there was Joan Kleinrock who built the chapter network in the early years along with leaders and members.

“There are so many dedicated people, both at the national office, on the Board, and in the chapters, who believe in the mission and deserve credit,” she says.

The Intrepid Girl and the Dog
Talking with Ahme, now 87, is a peaceful experience…and fun! She energizes you with her wit and joy of life. She prefers to be outdoors and likes to visit with you among the birds in her garden. Somehow you feel uplifted after having talked with her. As Rocky said, she is the optimal positive person.

Ahme never takes credit; she tosses it to others and brings out the best in everyone she meets. Intrepid? Ahme will say not. But, you can decide.

She remains a woman of few, yet weighty and gracious words. We’ll finish with some questions and her to-the-point and heartfelt responses.

What’s the most fun you’ve had in the 35 years of the organization? Going to the Conventions.

What message do you have for our members? The self-help philosophy is still here. Work hard, help yourselves, get out, go to a chapter meeting. Then, go to an HLAA Convention!

What is the most important thing you and Rocky shared as a couple during the SHHH/HLAA years? Meeting wonderful people.

What has SHHH, now HLAA, meant to your family—your children and grandchildren?  The organization is our family.

Ahme, if Rocky were alive today, what would he think about our organization’s 35-year history to date? Rocky used to say that the organization can help, but ultimately it comes down to the individual with hearing loss to embrace the message. I think if he were here today, he would be delighted.

Barbara Kelley is deputy executive director and editor-in-chief of Hearing Loss Magazine. She thanks Ahme for sharing her time for this article and to her four children for helping to recall many of the stories—Jolie Stone Frank, Ted Stone, Michael Stone, and Melanie Stone Hogan. Barbara Kelley can be reached at bkelley@hearingloss.org. 





Seen & Heard: Meredith Segal

27 08 2014

Meredith Segal is our Seen & Heard profile for the September/October 2014 issue of Hearing Loss Magazine, published bimonthly by the Hearing Loss Association of America. I photographed Meredith at HLAA Convention 2011 in Washington, D.C.

MeredithSegalS&H

MEREDITH SEGAL / Hockessin, Delaware / Born April 6, 1978 in Bogota, Colombia

THE BEST THING ABOUT BEING AN HLAA MEMBER IS… knowing that I am not alone in what I am dealing with and that there are people who I can reach out to and know that together we can come up with a plan to get through the challenges. It helps to brainstorm with others who truly know what you’re dealing with.

MY HEARING LOSS… My parents didn’t discover my hearing loss until I had testing in kindergarten. I didn’t get my first pair of bilateral hearing aids until first grade (I was 6). My hearing had always stayed the same until I got to high school and I knew once I was switched from in-the-ear to the behind-the-ear hearing aids, my hearing was worse. I qualified for a cochlear implant and got it March 5, 2013. I now have a cochlear implant in my left ear and wear a hearing aid in my right ear.

WHEN I WAS LITTLE, I WANTED TO BE A… basketball player (got a lesson in reality from my mom, who informed me that I couldn’t be a professional basketball player because of my height—I was in either fourth or fifth grade).

MY FAVORITE CHILDHOOD MEMORY IS… spending time with my family, trips we took together, and getting to go to Honduras with my parents to get my new sister and brother!

I LOVE THE SOUND OF… thunder (until my cochlear implant I couldn’t hear it at all). I love hearing my nephews and niece telling me they love me.

I MOST DEFINITELY AM NOT… taller than three feet (91 cm)!

I MISS… my dad and late orthopedic surgeon Dr Kopits.

PEOPLE WOULD BE SURPRISED THAT I… took Taekwondo and broke a one-half inch thick board with my foot; that I used to take horseback riding lessons.

HAPPINESS IS… loving yourself and accepting the things that make you different.

I HAVE A FEAR OF… bugs and bats. Also, I am wary of dogs tails—especially if they are wagging. I have been knocked off my feet with a dog’s tail!

I WOULD LOVE TO MEET… my birth parents (my adoption was a closed adoption).

WORKING NINE TO FIVE… I worked for Discover Card, Kmart (seasonal), Kohl’s (seasonal), assistant to the manager of my ENT doctor’s practice (before my hearing got really bad) and as a volunteer at the local hospital in their mail room.

I AM… a little person, a loyal friend and loving.

KINDEST THING SOMEONE HAS DONE FOR ME… In my senior year in high school we had a banquet and all the senior guys got on their knees to dance with me. That same year the senior class took a trip to New York City. One teacher said I couldn’t go unless my mom came with us because if my scooter broke down, I would be a liability. My friends found out what this teacher said and they told him that if my scooter broke down they would carry it back to the bus and load it, and would carry me around! He wouldn’t budge and told them I would be a liability. They said “no, you are the liability, not Meredith.” When the senior trip day came, about 50-75 percent of the senior class choose to not go on the class trip as a direct result of what the teacher said.

I like all the feature articles in Hearing Loss Magazine, especially the Seen & Heard profiles of people with hearing loss.

 





Revisited: Richard Reed, musician

1 08 2014

Originally posted 9.01.2010

Back in the summer of 2010, I traveled to Maine for vacation and stopped in Providence, RI en route on assignment to photograph musician Richard Reed for Cochlear Americas. I was really happy with the way the portraits turned out and got some nice shots using my ring light.

A full-time musician who wears a cochlear implant, Reed is the developer of HOPE Notes, a cochlear implant music appreciation program. You can read all about my photography assignment and meet Richard Reed in the blog re-post below:

https://cindydyer.wordpress.com/2010/09/01/photo-assignment-richard-reed-musician/

Richard Reed 3





Seen & Heard: Molly Corum

30 06 2014

Molly Corum is our Seen & Heard profile for the July/August 2014 issue of Hearing Loss Magazine, published bimonthly by the Hearing Loss Association of America. I photographed Molly at HLAA Convention 2011 in Washington, D.C.

Like artist Timothy Chambers, who is our cover feature in this same issue, Molly has Usher syndrome, an inherited condition characterized by hearing impairment and progressive vision loss. The vision loss is due to retinitis pigmentosa (RP), a degenerative condition of the retina, and usually appears during adolescence or early adulthood.

Molly S&H

 

 

MOLLY CORUM   Tampa, Florida / Born August 4, 1948, in Tampa

MY HEARING LOSS… I had a high fever when I was a few days old. I was profoundly deaf. I started speech therapy at age three at a local oral-deaf residential school. I was mainstreamed in kindergarten and received my first hearing aid in first grade. School wasn’t easy—my teachers had no training to help a ‘handicapped’ child.

I noticed my vision changing in my mid-30s. I was diagnosed with Usher syndrome in 1988 at age 40. I started using my white cane in 2006. I named it after my late boyfriend and it feels like we are still holding hands. Today I have a small tunnel of vision in my left eye, but the vision in the right eye is gone.

My life improved when I read an Ann Landers column in 1988 that referenced the SHHH Journal. I sent in for a copy, read it, and five seconds later I wrote a check for dues! In 1992 I learned about Foundation Fighting Blindness and attended their convention in Orlando. It was a positive experience.

I experienced a drop in my hearing in 1993 and learned I was a candidate for a cochlear implant. I attended my first HLAA Convention in 1994. For someone with hearing loss, it was the perfect place to be—captions everywhere! The vendors, volunteers and staff were all very understanding. I received my first cochlear implant in 1995 and went bilateral in 2006. Now I’m surrounded by a beautiful symphony of sounds!

I am encouraged because a lot has happened in the medical field since I was diagnosed with Usher syndrome. More genes have been identified and there are more trials and positive research. I am an avid advocate and participate in the Walk4Hearing and VisionWalk.

SAGE ADVICE… I was born in 1948. We never discussed disabilities in those days. With 48 million people having some degree of hearing loss, you are not alone. Research is easier with computers. Meet others with hearing loss, learn how they cope, and find out what services and products are available. Help us to advocate. Your hearing loss might be stable. Some hearing folks have had sudden deafness and became candidates for cochlear implants.

WHEN I WAS LITTLE, I WANTED TO BE… a speech teacher. In 1970 I volunteered with my speech teacher, Mrs. Denney Bolesta of Tampa. Two of the students are now my Facebook friends.

THE FIRST THING I BOUGHT WITH MY OWN MONEY WAS… a movie ticket. I then understood my dad’s quote, “Do you know how long it took me to make this much?”

PETS? I had a few pets growing up. From 1962–67, I showed American Saddlebred Horses in Florida, Tennessee and Kentucky. I loved the competition, made lots of friends and loved the parties. I also won a few blue ribbons.

I LOVE THE SOUND OF… classical music, happy conversation, squawking seagulls, the wind and the waves at the beach, babbling brooks (just as long as it is not dripping water in my condo!). After my cochlear implant, I was microwaving a small pizza. I opened the door and heard
the amazing sound of cheese bubbling.

MUSICALLY INCLINED? I once asked my mom if I could hear better, could I carry a tune? She said my dad could hear and he could not carry a tune. That made me feel so much better.

IN MY SPARE TIME, I… will talk your ear off about my fabulous cochlear implants, Hearing Loss Association of America, Foundation Fighting Blindness (FFB), Walk4Hearing, and VisionWalk. FFB has their newsletter and they share on Facebook the updated medical trials and research. I believe that in my lifetime we will have a cure for blindness.

BEST THING SINCE SLICED BREAD… Cochlear implants. I have two and they are my diamonds!

MY FRIENDS WOULD SAY I AM… Sassy. I say thank you.

THERE’S NO PLACE LIKE HOME… I am a fifth generation Floridian.

WORKING NINE TO FIVE… I worked at the Tampa Public Library for two years, the Tribune Times library for two years and for Hillsborough County Property Appraiser for 11 years.

EVER MEET ANYONE FAMOUS? Marilyn Van Derbur, Miss America 1958. I still have a picture of us together. I was a scrawny kid. I met her again in 1991 and asked for a re-take! I met Heather Whitestone, Miss America 1995, at the HLAA Convention in Atlanta in 2003. In Savannah, Georgia, in 1973 I was in a hotel elevator with my mom and saw Van Cliburn, the concert pianist. I’ve also met April Lufriu of Tampa. She became Mrs. Florida, Mrs. America, then Mrs. World.

LITTLE KNOWN FACTS ABOUT ME… I enjoyed my ballet lessons and I was good! I know the basics of water skiing and snow skiing and love the speed. The surgeon who did my first cochlear implant surgery taught me how to water ski in ninth grade. And finally, I am good at whacking my white cane—I am like the Red Sea—people jump out of my way!

I WOULD LOVE TO MEET… Dr. Samuel Nunez. Through genealogy research I have learned about my new Jewish heritage. I am a descendant of Dr. Samuel Nunez of Portugal (1668–1744), the first Jewish person to step foot in Savannah on July 11, 1733. The original colonist’s only doctor had died and Dr. Nunez was a great help. His great-great-grandson was Uriah Phillips Levy (1792-1862), the first Jewish Commodore of the U.S. Navy. Uriah was a great admirer of President Thomas Jefferson. He purchased and restored Jefferson’s home, Monticello.

HARDEST THING I’VE EVER DONE… In 2000, I had to take my dad’s car away from him because he was in the early stages of dementia. I could not have done this without my wonderful brother. I stopped driving in 1996.

IF I RULED THE WORLD… children would be required to read more books and to memorize English grammar rules. I think texting is ruining kids’ writing skills.

Hearing Loss Magazine is a very professional magazine that highlights personal stories of people with hearing loss.

 





The Pawlowski family

13 05 2014

I photographed the Pawlowski family for the cover of the May/June 2014 issue of Hearing Loss Magazine, published bimonthly by the Hearing Loss Association of American (HLAA). From left, Alex, Katherine, Megan (mom), Nicholas, Sebastian (dad), and Elizabeth. Eight-year-old Katherine is HLAA’s first Walk4Hearing Ambassador.

© Cindy Dyer. All rights reserved.

MayJune2014cover

 





Seen & Heard: Jane Seifert

12 03 2014

Jane Seifert, a member of the Hearing Loss Association of America (HLAA), just made her Seen & Heard profile debut in the March/April 2014 issue of Hearing Loss Magazine. I photographed Jane at HLAA’s Convention 2012 in Providence, Rhode Island.

Join the Hearing Loss Association of America! Do you have a hearing loss or know someone who does? Consider membership in the Hearing Loss Association of America. Sign up for membership here.

Photo © Cindy Dyer. All rights reserved.

Jane Seifert S&H

JANE A. SEIFERT   / New York City / Born July 25, 1949 in Detroit, MI

MY HEARING LOSS… I had slight hearing loss (called “sensitivity”) as early as high school. My hearing started deteriorating over the 30-year period when I was working off and on in Africa. I had to take anti-malarials (quinine) when I traveled or lived there. Quinine destroys the cilia in the ear. No one told me that until I came back from five months in Cameroon and my hearing had plummeted.  My audiologist and ENT were ordering brain scans and every imaginable test. Nothing showed up. Finally my audiologist of 10 years said, “When you go to all those strange places, you never take quinine, do you?” I said, “Of course I do.” “Well,” she said, “it took me long enough to ask.”

Six years ago I got a cochlear implant, and one-and-a-half years ago I got a second one. It’s like a miracle! I’ve even started listening to music and going to musicals, not because my friends want to, but because I enjoy them.

SAGE ADVICE… Don’t be in denial. It wastes a lot of time that could be used to figure out how to overcome the problem and avoid going into a cocoon.

WHEN I WAS LITTLE… I was totally without ambition. The assumption by my parents and everyone else was that I would go to college, marry the boy next door and raise little Janes and Johns. I knew I didn’t want to do that, but I had no idea what I did want to do. My subsequent careers (banking, international financial and economic development, teaching) happened quite serendipitously, with a combination of luck and seizing the moment.

MY FAVORITE CHILDHOOD MEMORY IS… my mother reading to me at night before I went to sleep.

THE BEST GIFT I EVER RECEIVED… was my cats, Tuffy and Shadow—they have been very loyal friends. I never had a pet before and I’ve been astonished at how much positive influence they have over my life.

THE FIRST THING I BOUGHT WITH MY OWN MONEY… I didn’t buy a thing. I put every dime into a savings account so I would have the money to go to Paris for my junior year of college—and I did!

IN MY SPARE TIME, I… do word and number puzzles, work out, read voraciously, watch old and foreign movies, go to restaurants, tell stories, cultivate and maintain friendships. I am also a history buff and an avid traveler.

I WISH I HAD A TALENT FOR… drawing and painting. I would find it so relaxing to be able to paint and draw. I would settle for being a good photographer.

I WOULD LOVE TO MEET… Bill and Melinda Gates. I feel they have been given bad advice on education and would hope they would be open to different viewpoints.

I HAVE A WEAKNESS FOR… chocolate and anything that’s blue and yellow—like the blues and yellows in Monet’s kitchen.

I COLLECT… jewelry from around the world, pottery, old lace, paintings, art books, friends and good memories of them.

WORKING NINE TO FIVE… banker, economic and financial development officer, special ed teacher, teacher of English as a foreign language, translator/interpreter

HAPPINESS IS… a sunny Sunday afternoon. Brunch with friends. Coming home and reading the Sunday New York Times. Taking a nap with the cats curled around me.

I AM…  inquiring, hopeful and adaptable.

I HAVE THE UNCANNY ABILITY TO… use very few clues (mostly non-verbal) to deduce what is going on around me.

I SIMPLY CANNOT LIVE WITHOUT… good friends, good food and good conversation.

MY GREATEST ACCOMPLISHMENT… was making loans to Bosnian women after the Civil War so they could start their own businesses and recover—and they did.

The personal articles in Hearing Loss Magazine make me feel less lonely and isolated.





Seen & Heard: Carol Halla

6 11 2013

Carol Halla is our Seen & Heard profile in the November/December 2013 issue of Hearing Loss Magazine, published bimonthly by the Hearing Loss Association of America. I  photographed Carol at HLAA’s Convention 2012 in Providence, R.I.

© Cindy Dyer. All rights reserved.

Seen & Heard Carol Halla

CAROL HALLA  Charleston, SC / born January 3 in Evanston, IL

MY HEARING LOSS…I started losing my hearing in both ears rapidly while I was in the Air Force, stationed in Hawaii, when I was 26. I was tested extensively. Over the course of the next 10 years, my hearing loss continued to deteriorate. It would seem to level off only to drop again. No definite cause was ever found, but a lot of scary stuff was ruled out. Through the 80s and 90s I wore increasingly large and powerful hearing aids and remained on active duty. After my retirement from the Air Force in ’97, my industrial strength hearing aids no longer provided the benefit I needed.

I felt the frustration, isolation, and grief that only a person with a profound hearing loss can truly understand. When I found out that I was a possible candidate for either one or two cochlear implants, I was at a total loss as to what to do. After doing my own research, working with the helpful folks at the Veterans Administration, our local CI center, and receiving a wealth of information, I took a giant leap of faith and had my CI surgery in July 2010. Now, I wear one CI on the left ear and a hearing aid on the right ear.

SAGE ADVICE…Educate and advocate for yourself! If you need a hearing aid, wear it and take pride in not allowing yourself to be too stubborn, shy or self-conscious. Be up front with your friends and family—they should offer the most support—but only if they are fully informed! Don’t give up easily—most hearing aids are programmable or adjustable to fit your needs.

FUNNY HEARING LOSS MOMENT…Last year during my annual routine mammogram, when the technician had placed me in the position then went behind the screen to activate the machine, she said over her shoulder what I thought was “say cheese!” But what she really said was “don’t breathe!” Too funny! We both cracked up.

WHEN I WAS LITTLE, I WANTED TO BE…a vet because I love animals.

PETS? Yes—three crazy furball cats—Snickers, Doodles and Katie.

THE HARDEST THING I’VE EVER DONE…During my Air Force career, I deployed to the Persian Gulf twice. The first time I lived in a tent in the desert for seven months with 2 other women. The bathroom facilities were one-quarter mile from our tent and were—shall we say—very primitive! The second time it was an apartment-type dwelling in Riyadh, Saudi Arabia with a different group of women for four months. When I got home each time, I really appreciated all the little comforts of home—like my own bathroom!

I LOVE THE SOUNDS OF…With my new CI, I never tire of hearing the birdsong in my backyard. After activation, the sounds blew me away and brought tears to my eyes.

IN MY SPARE TIME, I…love to read, follow my friends on Facebook and the Hearing Journey, work in the yard on a nice day, continue organizing old pictures, crafts and learning more about my new Canon camera.

PEOPLE WOULD BE SURPRISED THAT I…completed three marathons while I lived in Hawaii.

WHO HAS HAD THE MOST INFLUENCE IN YOUR LIFE? Other than my parents, it’s my loving husband of 28 years, Bruce.

I HAVE A WEAKNESS FOR…vintage jewelry.

I COLLECT…dust bunnies under the furniture (shhh!).

MY FAVORITE COLOR IS…sunny yellow—a real mood lifter.

FIVE PLACES I HAVE LIVED…Wilmette, IL; Stuttgart, Germany; Selma, AL; Aiea, Hawaii; Rapid City, SD; Las Vegas, NV; Charleston, SC. Okay, that’s more than five, but who’s counting?

WORKING NINE TO FIVE…drug store clerk, shoe store clerk, Pizza Hut waitress, 22-year Air Force career, inventory management at an engineering company

I AM… stubborn, persistent and caring.

I HAVE THE UNCANNY ABILITY TO…think the same thing my husband is thinking at the same time. Great minds think alike, right?

I SIMPLY CANNOT LIVE WITHOUT…love and hugs.

I WANT TO BE REMEMBERED…as someone who looked for the good in people without being judgmental.

“I love the interviews and articles in Hearing Loss Magazine. I love reading about how other people are successful in what they chose to do and don’t let hearing loss rule their world.” 





Seen & Heard: Debbie Mohney

7 09 2013

Debbie Mohney is our Seen & Heard profile in the September/October 2013 issue of Hearing Loss Magazine, published bimonthly by the Hearing Loss Association of America. I met and photographed Debbie at HLAA’s Convention 2011 in Washington, D.C.

© Cindy Dyer. All rights reserved.

S&H Debbie Mohney

Debbie Mohney / Boulder, CO / born June 5 in Boulder, CO

MY HEARING LOSS… I was born with a bilateral high-frequency hearing loss, but it wasn’t discovered until I was in kindergarten. I had speech therapy in kindergarten, and then learned how to advocate for myself by sitting in the front row and getting to know my teachers very well. I got my first hearing aid at 18 when I realized I needed to be able to hear professors in college who often face the blackboard while they write. I now wear two BTE Phonak Nios. They have Sound Recover, which is a frequency transposition program. I make sure all my hearing aids have a telecoil so I can use assistive listening systems. I also have an iCom—a Bluetooth streamer—which allows me to use my cell phone, listen to my iPod, and gives me TV in stereo surround sound—very cool!

SAGE ADVICE… Learn everything you can and attend a Hearing Loss Association of America chapter meeting. Learn what works from other people and all you can about the technology that is available. Stop bluffing your way through conversations and start educating about your needs. Easier said than done sometimes, but I used to be the same way.

MY FUNNY HEARING LOSS MOMENT… The funniest one that wasn’t at the time: I would often meet my parents for lunch, and one day my Mom called and said “We are going to be a little late, Daddy’s dead in the car.” My heart started racing and I shouted out “What???” She replied, “Yeah… Daddy’s down in the garage and the battery is dead in the car.” For many days after that, every time I saw or talked to my Dad, I asked him how he was doing.

WHEN I WAS LITTLE, I WANTED TO BE… a teacher and a writer.

THE BEST GIFT I EVER RECEIVED… My grandma taught me how to read when I was three years old, so I have no memory of actually learning how to read. It gave me advantages that I would not otherwise have with my hearing loss.

MY FAVORITE CHILDHOOD MEMORY IS… sitting in my Dad’s lap to go to sleep as a toddler, watching Johnny Carson. Really, I think I watched more Johnny Carson than I got sleep!

WORKING NINE TO FIVE… I’ve been a babysitter. I’ve worked in a print shop putting publications together. I’ve been an accounts receivable clerk and an office manager.

I HAVE A WEAKNESS FOR… Disneyland and Disneyland.

I LOVE THE SOUND OF… my son playing saxophone. He has a swing band and his music has inspired me to learn how to dance.

IN MY SPARE TIME… I volunteer with HLAA and other hearing loss-related organizations and Boy Scouts. I love to listen to music and enjoy museums, movies and hiking.

MEETING ROCKY STONE… I met Rocky Stone several times—the first time at the New Orleans SHHH Convention. He was so warm and friendly to talk to, and he always asked me about Ann Pruitt from Colorado. From then on, he always remembered me and always had a big smile for me.

Hearing Loss Magazine is a great magazine. In each issue there is so much timely information about everything to do with hearing loss. From more technical articles to personal stories and advocacy, you come away from the magazine empowered to do something.





Seen & Heard: Barbara Johnson

12 07 2013

Barbara Johnson is one of two Seen & Heard profiles in the July/August 2013 issue of Hearing Loss Magazine, published bimonthly by the Hearing Loss Association of America. I met and photographed Barbara at HLAA’s Convention 2012 in Providence, Rhode Island.

Photo © Cindy Dyer. All rights reserved.

Barbara Johnson S&H

BARBARA JOHNSON

Newton, Massachusetts / Born March 23 in Lowell, Massachusetts

MY HEARING LOSS… I stopped cheating on my hearing tests in the fourth grade. Each year the school nurse gathered us in her office where we’d put on heavy rubber headphones and I would raise my hand when I saw the other kids raising theirs. I finally realized the point of this test and stopped raising my hand unless I actually heard the tone.

Hearing loss runs in my family—four out of my five brothers have serious hearing loss and I am the one sister out of four who has hearing loss. My oldest brother wears two hearing aids. My second brother has bilateral cochlear implants. My fourth and fifth brothers are deaf in one ear.

We didn’t talk about our hearing loss when I was growing up. My loss was essentially untreated until I decided this year, at 51, to get my first cochlear implant. I still have about 30 percent residual hearing in my non-implanted ear.

I’m very new with my cochlear implant, activated March 23, 2012, on my birthday. It’s exciting and challenging.

SAGE ADVICE FOR SOMEONE NEWLY-DIAGNOSED WITH HEARING LOSS… Talk about it. Find out what technology can help you, such as hearing aids, assistive listening devices, captioning, CART. Figure out what you need to communicate your best and ask others in your life to help. Seek out others who also have hearing loss. They’re out there and it’s so helpful to connect with someone else who really “gets it.”

WHEN I GREW UP, I WANTED TO BE… a teacher, a ballerina, or a stewardess (yes, that’s what we called flight attendants when I was a kid).

THE HARDEST THING I’VE EVER DONE WAS… get a cochlear implant. It’s a big deal!

MY LITTLE-KNOWN TALENT IS… drinking coffee in the shower.

HOBBIES? dance, photography, foreign language study, backpack travel to far-flung corners of the globe

PETS? Hank the Cairn terrier, who thinks he’s a cat; Scooter the Jack Russell, who would love to eat a cat; Hildie the Aussie shepherd, who is a scaredy-cat; and Anoush, the Shitzu-terrier mix, who just cuddles better than a cat

I DEFINITELY AM NOT… a couch potato!

WORKING NINE TO FIVE… lifeguard, cashier, ice cream scooper, computer programmer, IT project manager

HAPPINESS IS… hanging out with my husband and four dogs.

MY FAVORITE SEASON IS… summer. I love being outside anywhere on the New England coast, especially the Outer Cape.

I AM… optimistic, energetic and fun.

I HAVE A WEAKNESS FOR… home-baked goods.

I HAVE THE UNCANNY ABILITY TO… connect with others no matter who they are and find common ground.

I SIMPLY CANNOT LIVE WITHOUT… coffee.

MY THREE FAVORITE POSSESSIONS ARE… my MacBook Air, orange ballet flats and my paid-for car!

IF I RULED THE WORLD… there would be mandatory global travel for all! Get to know the world, people!

MY LONG-TERM GOAL IS… to make peace with my hearing loss. (Right now we’re kind of fighting…)

MY GREATEST ACCOMPLISHMENT IS… being successful in life and love while living with a severe hearing loss.

I WANT TO BE REMEMBERED… as a kind, loving, helpful and positive person who made a difference in someone’s life.

I love reading other peoples’ stories in Hearing Loss Magazine and encourage the publication to reach out to readership on a regular basis for input and ideas.





Seen & Heard: Edward Ogiba

12 07 2013

Edward Ogiba is one of two Seen & Heard profiles in the July/August 2013 issue of Hearing Loss Magazine, published bimonthly by the Hearing Loss Association of America. I met and photographed Ed at HLAA’s Convention 2012 in Providence, Rhode Island.

Photo © Cindy Dyer. All rights reserved.

Edward S&H

EDWARD F. OGIBA

Siesta Key in Sarasota, Florida / I came flying out on August 4 in New York City in the final year of Mayor Fiorello LaGuardia’s reign.

MY HEARING LOSS… My hearing loss started in the military and progressed until Ménière’s disease left me deaf. Today I am totally grateful for the cochlear implant in one ear and a hearing aid in the other.

SAGE ADVICE FOR SOMEONE NEWLY-DIAGNOSED WITH HEARING LOSS… Find the right audiologist and give him or her the feedback they need to help you get the most out of your hearing devices. Join an HLAA chapter. Focus at communication strategies with your family, friends and co-workers so they know how to best help you hear them.

MY FUNNY HEARING LOSS MOMENT… When I got my cochlear implant, my vanity prevented me from wearing it to client meetings. But when I had to facilitate an all-day workshop for a board of 24 people I had no choice. After the meeting, a board member approached me and she said: “I will give you credit as this was the most productive meeting we have had in a long time. But you are the rudest person whom I have ever encountered in a meeting.” I was mortified and said: “I am sorry, madam. What did I do?” She barked: “What did you do? How can you be so inconsiderate to carry on multiple conversations? Not once all day did you have the courtesy to turn off your cell phone.” I checked to confirm my cell phone was off before I realized: “Do you mean this?”pointing to my implant. She gave a disapproving nod, snipping “you must be a phone freak to have one implanted.” I laughed and told her, “This is a cochlear implant that allows me to hear despite my hearing loss.” There was a chuckle from another board member as he apparently had told her it was an implant. She then expressed her embarrassment and apology, but I countered: “You have given me a wonderful gift. If you thought it was a phone, others might too, and regardless you have given me the courage to stop being such a bozo about wearing it.”

WHEN I GREW UP, I WANTED TO BE… the starting second baseman for the Brooklyn Dodgers.

FAVORITE CHILDHOOD MEMORY… Ebbets Field at age five. I never saw grass greener.

FIRST THING I BOUGHT WITH MY OWN MONEY WAS… a ’57 Caddy convertible.

PETS? Moka. She’s a crazy Russian Bear Hound.

MUSICALLY INCLINED? I play a mean shower. With my hearing aids out, I can actually stand my own singing.

DO YOU SPEAK ANY LANGUAGES OTHER THAN ENGLISH? Mon Français est pathétique, mais le langage est si romantique et la cuisine est si fabuleux. Il ne m’échoue jamais excepté toutes les fois que je suis servi les goûts d’un plateau de cendre sautéed. (Translation: My French is pathetic, but the language is so romantic and the food is so fabulous. It never fails me except when I have used the likes of “ash tray sautéed.”)

YOU JUST WON A $10,000,000 LOTTERY. WHAT HAPPENS NEXT? CPR.

I WOULD LOVE TO MEET…Thomas Jefferson, the consummate multi-tasker.

FAVORITE COLOR? I used to say “blue.” But after living in Martha Stewart’s county for 16 years, I have been conditioned to say Araucana Teal or perhaps Aragon Sky.

FIVE PLACES I HAVE LIVED… Long Island, Manhattan, Toronto, Weston (CT), Sarasota

WORKING NINE TO FIVE… an ad or Mad Man in Manhattan, again in Toronto, head of New Products Company in Toronto, again in Connecticut, development director for the Ear Research Foundation.

EVER MEET ANYONE FAMOUS? Prince Phillip, Barbara Streisand, Doris Day, Ricardo Montalbán, Margaret Hamilton, Patricia Neal, Peter Ustinov—some of the few sane moments for me as a Mad Man.

Hearing Loss Magazine always delivers a warm hug of support, the inspiration to do more and the guidance from the legions of superheroes in hearing loss nation to blaze the way. Thank you, HLM.





Design Studio: “Hear This!” CD project for AAMHL

17 06 2013

I just completed this CD package design for AAMHL (Association of Adult Musicians with Hearing Loss). They are publishing the project through Amazon’s CreateSpace, so the CD will be available for purchase shortly.

My friend, Charles Mokotoff, plays two pieces on “Hear This!” I photographed Charles for the feature he wrote for the January/February 2010 issue of Hearing Loss Magazine. You can see that post here.

Design © Cindy Dyer/Dyer Design. All rights reserved.

HearThis! CD Artwork Blog

Also on the CD:

Celloist PAUL SILVERMAN has performed at Carnegie Hall, the Kennedy Center Concert Hall and the Strathmore Music Center.

Pianist, soloist and chamber musician JENNIFER CASTELLANO was commissioned to write music for the North/South Chamber Orchestra and was named the 2012 Commissioned Composer for New Jersey Music Teachers Association.

Pianist KATHRYN BAKKE received her Masters degree in Piano Performance from the University of Minnesota. She is a speaker, writer and advocate for better hearing loss access.

Singer/songwriter and certified hearing aid dispenser ELISSA LALA has made a career singing vocals for TV documentaries; she was hired by Aaron Spelling to sing “All the Things You Are” for the ABC miniseries Crossings.

Prolific singer/songwriter BLUE O’CONNELL works as a music practitioner at the University of Virginia Medical Center, performs at Charlottesville, VA coffeehouses, and has published a CD called “Choose the Sky.”





Seen & Heard: Teri Wathen

21 05 2013

Teri Wathen is our Seen & Heard profile in the May/June 2013 issue of Hearing Loss Magazine, published bimonthly by the Hearing Loss Association of America. I met and photographed Teri at HLAA’s Convention 2012 in Providence, Rhode Island.

Photo © Cindy Dyer. All rights reserved.

TeriWathen S&H

TERI WATHEN
Richmond, TX / Born April 2 (not quite a fool) in Houston, TX

MY HEARING LOSS… I was born with a mild hearing loss and got my first hearing aid at age 12. My hearing loss progressively grew worse as I aged (I aged?). I am now a bilateral cochlear implant user and love them.

SAGE ADVICE FOR SOMEONE NEWLY-DIAGNOSED WITH HEARING LOSS…Get hearing aids as quickly as possible. They are not a cure-all, but they sure do help. Find other people with hearing loss and ask a lot of questions. Your local HLAA Chapter is a good place to start. Educate yourself. Do not bluff.

MY FUNNY HEARING LOSS MOMENT… While walking down the street with a friend, looking at her in order to read her lips, I ran into a light pole. This really happened!

WHEN I GREW UP, I WANTED TO BE… an airline stewardess. I don’t think they call them that anymore, though.

FIRST THING I BOUGHT WITH MY OWN MONEY WAS… my first car, a 1967 red and white Ford Mustang convertible. My sons wish I still had that car. “It’s worth at least $40 – $50,000 now, mom!”

HARDEST THING I’VE EVER DONE… I was a business teacher and taught typing, shorthand, business law and accounting. When computers first came out, I had to teach programming. I had never taken that course, had never programmed anything, and had no idea how to teach it. Some of my students knew more than I did. It was agonizing and embarrassing!

I LOVE THE SOUND OF… I never thought I’d say this, but I love the sound of trains. We just moved into a new subdivision that has a train close by. We hear the train horns all times of the day and night (except when my processors are off). Now when I hear trains, it reminds me of “home.”

IN MY SPARE TIME, I… love to play Sudoku, the Jumble, crossword puzzles, and Spider Solitaire on the computer.

I MISS… my friend, Karen, who passed away way too young.

WHO HAS HAD THE MOST INFLUENCE ON YOUR LIFE? My husband, Ray. He is kind, talented, humorous, loves to play with words (puns), a poet, and a great husband, father, and grandfather. We just celebrated our 40th anniversary by renewing our wedding vows.

MY KIDS HAVE TAUGHT ME… Both of my sons have hearing loss. My younger son has two sons and they also have hearing loss. All of them have inspired me to advocate for others with hearing loss.

PEOPLE WOULD BE SURPRISED THAT I… have a black belt in Karate.

WORKING NINE TO FIVE… When I was a teenager, I gift wrapped in my mother’s dress shop. In college, I worked as a secretary for my aunt and uncle’s advertising agency. I was a teacher for 32 years. I have been a hearing loss resource specialist for the past 10 years. (That’s only four jobs in the last 50 years!)

I AM… passionate, tall, laid back, forgetful, and very sensitive. (I cry at the drop of a hat.)

WHAT’S THE BEST THING SINCE SLICED BREAD? My iPhone. I love that I can text, e-mail, talk, and play games all in the palm of my hand.

MY GREAT ACCOMPLISHMENTS… getting my master’s degree, getting my black belt, having two wonderful sons, and being married to Ray
for 40 years!

I WANT TO BE REMEMBERED… as someone who had a passion to help people with hearing loss.

Hearing Loss Magazine is great! I love reading about new technology and inventions that can help those of us with hearing loss. I love reading about others and what they have accomplished.





Meet Rosemarie Kasper

21 05 2013

I had the pleasure of photographing Rosemarie Kasper at HLAA Convention 2012 in Providence, Rhode Island. Read her article below from the May/June 2013 issue of Hearing Loss Magazine to see why I find her to be such an inspiration!

Rosemarie Kasper

Photo © Cindy Dyer. All rights reserved.

Hearing Loss: My “Secondary” Disability by Rosemarie Kasper

For half my life, navigating the barrier filled world in a wheelchair was a major struggle. My loving parents always wanted the best for me but worried endlessly about my safety.

The major characteristic of Osteogenesis Imperfecta (OI) is fragile bones, bones that can sometimes break even without moving, especially during infancy and youth. Related symptoms include respiratory problems, scoliosis,  short stature, weak muscles, and brittle teeth. Not long ago it was determined that more than 50 percent of individuals with OI experience hearing loss.

Due to inaccessible schools and the absence of special transportation, a public school teacher came to my home for one hour each school day—after classes were finished. Although I was frustrated at the separation from school and classmates, I looked forward to attending a local college and preparing for a career.

This was not to be. As an interviewer at a local college explained, “We have too many stairs” to accept students in wheelchairs. It was not until 1968, 13 years after high school, when my college dream became a reality. I was so overjoyed to attend new and welcoming Bergen Community College that instead of trying to hasten my graduation, I wanted to delay it!

After completing my associate’s degree at Bergen Community College, I was accepted at the four-year, stairfilled Fairleigh Dickinson University in Teaneck, New Jersey, then stayed on for my master’s degree in counseling. All courses were taken at night and I continued to work full time during the day. As my college credits accumulated, my position with the Division of Vocational Rehabilitation changed from clerical to counseling.

Through the years the problem of inaccessible facilities gradually lessened as the equal rights of people with disabilities were enhanced through legislation. My peers and I, with supporting human service agencies, joined together in advocating for our cause. As a result in my 20s I enjoyed an active life including a secretarial job, membership in clubs, and community activities. The future looked bright.

Hearing Loss Enters the Picture
In my early teens, my parents became concerned about the volume I preferred on radio and TV but attributed this to a fondness for loud sounds. Tests ultimately proved otherwise, and at 18, I received my first hearing aid. It was upgraded periodically in accord with my needs and advances in technology. I also learned the value of binaural aids and regretted not trying them sooner.

Various assistive listening devices (ALD) joined the group of communication tools as needed. Presently, my captioned phone and alerting system are especially valued. But captioning for TV? With the volume turned on high, I felt that was not needed.

Who Dunnit?
One memorable evening I watched a mystery show in my room while my parents watched a different program on another TV. When the mystery ended, I stared blankly at the screen—I had no idea what had happened! And there was no one I could ask. The next day, I ordered a caption decoder box.

On the Fourth of July in 1985 the unthinkable happened: I lost total hearing in my right ear. This was a spontaneous medical occurrence and drastically reduced my communication ability. With the encouragement of my friend and companion, Jo Ann, I enrolled in a lip reading course, and we then both took lessons in sign language. Although nothing helped significantly, basic knowledge of sign language has been useful in certain circumstances. Children are often fascinated by sign language and learn it quickly. An intro course for the early grades might prove valuable.

After expending time and energy trying to convince people that a small person in a wheelchair can function independently, my difficulty in communication has become very frustrating. Servers in restaurants, salespeople, clerks at ticket counters, persons attending meetings—all frequently present communication challenges that hinder independence.

Certain situations are especially frustrating. In a vehicle it is virtually impossible to lip read, and my hearing—even when aided—is useless without this assist. It is also nearly impossible to talk with anyone who is pushing my wheelchair. In small groups every effort will be made to seat me where no one will stumble over my wheels, but it is rarely possible to face everyone.

Roller Coaster Ride with Captions
I have learned to expect far more surprises with a hearing loss than with a wheelchair. If a building is wheelchair-friendly there rarely are difficulties. With a severe-to-profound hearing loss, the absence or malfunction of an assistive listening system can be a major problem. There also seems to be an almost universal belief that people with hearing loss can benefit from sign language interpreters. This depends on various factors, and many late-deafened persons such as myself lack all but minimal skills in sign. I am everlastingly grateful for the availability of captions and this is especially true at HLAA Conventions!

However, movie captioning was not initially helpful to me. With Rear Window captions, the device is placed in a cup holder next to the patron’s seat, but a wheelchair has no holder. My alternative was to hold the device in my hand throughout the movie, which was cumbersome and tiring. However, my own advocacy and especially that of my friend, Arlene Romoff, a crusader in theater access for people with hearing loss, helped to alleviate this problem and a special holder was developed for wheelchairs.

I was thrilled with the advent of captioned live theater but this joy was short lived as the captions often are not readable from wheelchair locations. To assure safety, and as mandated by the fire department, wheelchairs are placed in a specific area close to an exit. One evening when it was impossible to read the captions, theater personnel led our small group to three different areas, each with a progressively worse view. We missed a large part of the first act before reaching a place where the captions were marginally readable. I quickly learned to contact the theater before ordering tickets to a captioned show.

He Did a Great Job
Early in my adjustment to hearing loss I was fortunate to learn about the local New Jersey HLAA Chapter, then known as SHHH. Although I now have a large number of role models, Jack Mulligan, the long-time president, was my first and he similarly inspired many others. He chaired 11 meetings each year, many with interesting speakers. He also sent out a newsletter and added a personal note on many. A retired gentleman, he spent his “spare time” volunteering at our local hospital, and appeared in a video featuring their services for persons with hearing loss.

Jack unfailingly would tell all who helped: “You did a good job!” In 1994, he was honored with the well-deserved Spirit of SHHH Award. Our committee has tried to follow in his footsteps, but he is a tough act to follow.

Going Forward
Even before my hearing loss became so severe, I sensed how much greater its impact would be on my life than the wheelchair now was. Friends easily learned to push my wheelchair and realized the type of help I needed in certain situations. They willingly folded and lifted the wheelchair into their cars and some even carried me up and down steps.

With my hearing loss, it was more problematic. People tended to overlook this invisible condition and did not know how to deal with it. Everyone’s time and patience in repeating a conversation are limited. Today, a dictation app is available for iPads and iPhones but this is appropriate only in certain circumstances. As they say, it’s a different ball game.

A year ago a friend who is a CART reporter expressed her willingness to caption Mass at my church. It seemed a gift from heaven, but I was unsure that it could be set up conveniently. I was wrong, and my pastor was willing and even eager to offer this service. Since then, two Masses each month are captioned and while not many worshippers with hearing loss appear to be availing themselves of this service, those of us who do find it helpful.

On a number of occasions I have been invited to give presentations to classes of medical students. Often schools and universities will seek out speakers, preferring persons who are experiencing the problem. Afterwards, students sometimes commented: “The textbooks never talked about that!”

Public hearings afford the opportunity to testify on various issues including transportation needs, communication issues, and more. It is a valuable opportunity both to provide input and to promote awareness. Overall, coping with hearing loss in addition to using a wheelchair has impressed on me that the most formidable problems might not be visible. Staying at home or pretending to understand when we don’t will not help us or future generations, and joining with others in a cause—such as HLAA demonstrates again and again—can be both rewarding and the key to success.

Rosemarie Kasper graduated with a master’s degree in counseling from Fairleigh Dickinson University and worked for almost 35 years with the New Jersey Division of Vocational Rehabilitation in Hackensack. At retirement she was a senior rehabilitation counselor. Rosemarie also worked for four semesters as an adjunct instructor at Bergen Community College in the Department of Continuing Education. In addition, she served as the editor of Breakthrough, the newsletter of the Osteogenesis Imperfecta Foundation (OIF) for 10 years. Rosemarie has been actively involved in OIF for many years, served on the national Board, and co-founded the local New Jersey Area OI Support Group 20 years ago. She remains its co-chair. In addition, she currently is president of the HLAA Bergen County New Jersey Chapter. Her top interests are travel and writing. With close friend Jo Ann, she has traveled to 39 states as well as Canada, the British Isles, and Bermuda. She has published close to 100 articles in magazines and newspapers, most on her travels as well as how-to pieces. Rosemarie can be reached at rdkoif@verizon.net.

______________________

What is Osteogenesis Imperfecta?
Osteogenesis Imperfecta (OI), a genetic disorder, affects a person from birth throughout his or her life. It is caused by an error—a mutation—on a gene that affects the body’s production of collagen found in bones and other tissues. OI is variable having eight different types ranging from lethal to mild. The number of Americans affected by OI is estimated to be 25,000-50,000. For more information about OI, go to www.oif.org, the website for the Osteogenesis Imperfecta Foundation.





Hearing Loss Magazine, May/June 2013 issue

21 05 2013

The Bozzone family graces the cover of the May/June 2013 issue of Hearing Loss Magazine, which is published bimonthly by the Hearing Loss Association of America (HLAA). Jason and his wife, Melissa, have three children. Their youngest child, Madeline, has a hearing loss. In this issue of the magazine, Melissa writes about Madeline in “Our Party of Five: Madeline’s Story.” Julie Fisher, the Walk4Hearing Program Assistant, interviewed Jason for this issue as well. I photographed the Bozzone family at a Pennsylvania Walk4Hearing event last fall.

© Cindy Dyer. All rights reserved.

HLM_MayJune_2013_Cover

Also in this issue:

National Sponsors Create Awareness for Walk4Hearing
2013 sponsor Noreen Gibbens explains why she supports the Walk4Hearing.

The Countdown is On
Nancy Macklin builds excitement for Convention 2013 in Portland, Oregon.

Closed Captioning Frustrations—How to Get Some Help
Carol Studenmund explains how consumers can help improve the quality of captioning on TV.

Can You Hear Me Now? Maximizing Your Hearing on the Phone
Audiologist Brad Ingrao offers technical tips and communications strategies for using the phone.

Seen & Heard
HLAA member Teri Wathen is this issue’s profile.

Advocacy, One Person at a Time
Lise Hamlin, HLAA’s Director of Public Policy, outlines how the organization advocates for public policy and federal regulations, as well as for the rights on more personal levels

Hooked on Bionics
May is Better Hearing and Speech Month and in honor of the event, world-renowned puzzle creator George Barany creates a doozie for our readers.

Hearing Loss: My Secondary Disability
Osteogensis Imperfecta is a rare genetic condition. Adding hearing loss to that could mean a lot of frustration and insurmountable challenges, but, not for author Rosemarie Kasper.

New in Print: Shouting Won’t Help: Why I—and 50 Million Other Americans—Can’t Hear You
Janet McKenna reviewed Katherine Bouton’s new book.





Seen & Heard: Gary Trompower

6 01 2013

Gary Trompower, a member of the Hearing Loss Association of America (HLAA), made his Seen & Heard profile debut in the January/February 2013 issue of Hearing Loss Magazine, which just arrived in member mailboxes. Our Seen & Heard column first made its debut in the magazine in 2010 and was met with great enthusiasm. We’ll be publishing one or two profiles (as space allows) in each issue of the bimonthly magazine. Other members previously profiled were Danielle NicosiaJohn KinstlerJudy Martin, Anne TaylorSam SpritzerJeff BonnellEloise SchwarzGlenice SwensonLaurie PullinsRosemary Tuite and Kathy BorzellTommy Thomas and Marisa Sarto. I met and photographed Gary in Providence at HLAA’s convention in June 2012.

Join the Hearing Loss Association of America!
Do you have a hearing loss or know someone who does? Consider membership in the Hearing Loss Association of America. Student annual dues are $20, individual annual dues are $35, and family/couple annual dues are $45. Fees outside the U.S. are slightly higher. All memberships include discounts on hearing-related products, convention and special event early bird discounts, AVIS and Alamo car rental, and the award-winning Hearing Loss Magazine. Sign up for membership here.

And what is the top thing you’ll learn about Gary? The man has it bad for Reese’s Peanut Butter Cups! (They’re my favorite, too!)

© Cindy Dyer. All rights reserved.

S&HGaryTrompower

Canton, Ohio / Born May 5, 1956 in Canton, Ohio

ALL ABOUT MY HEARING LOSS… I was 17 years old and diagnosed with sensorineural hearing loss in both ears. It’s come to rest now at 95% loss in my left ear and 80% loss in my right ear. I wear one behind-the-ear aid on my right ear, which helps to hear some sounds.

SAGE ADVICE FOR SOMEONE NEWLY-DIAGNOSED WITH HEARING LOSS… Remind yourself that getting angry is not going to fix anything! Go out and enjoy life the best you can.

FUNNY HEARING LOSS MOMENT… People will telephone and ask for me and my wife will tell them, “Gary is deaf and I will ask him your questions.” The person calling will say they’ll call back or call tomorrow. Huh? Like I’m going to be able to hear them tomorrow or sometime later? I only wish it worked that way!

WHEN I WAS LITTLE, I WANTED TO BE… Batman!

FIRST THING I BOUGHT WITH MY OWN MONEY Reese’s Peanut Butter Cups

HARDEST THING I’VE EVER DONE… Quit smoking cigarettes (more than six years tobacco free). My stress level went sky high, but the health benefits are worth the effort.

I MOST DEFINITELY AM NOT… a snobbish or a stuck-up person. Some people get that impression, but it’s just that many of us have the, as Rocky Stone would say, “invisible condition,” and we just don’t hear them.

HOBBIES? Woodworking and computers

PEOPLE WOULD BE SURPRISED THAT I… like math. I always have and it’s been very useful in this life.

I WISH I HAD A TALENT FOR… hog wrestling and playing bass guitar.

FAVORITE PLACE TO BE… with my wife

I HAVE A WEAKNESS FOR… Reese’s Peanut Butter Cups

WORKING NINE TO FIVE… At 14, I flipped burgers at the local ice cream stand. At 19, I managed a Radio Shack. At 21, I tried selling hearing aids. At 22, I ran my own small lawn care business, and then I started my current engineering career (35 years) with a local medical center.

I AM… a traditional, red-blooded, American dude!

MY FRIENDS WOULD SAY I AM… really, really cool!

BEST THING SINCE SLICED BREAD…  Texting—it’s a fantastic way for people with hearing loss to communicate.

I REALLY SHOULD STOP… eating Reese’s Cups, but they’re so good!

PHRASES I OVERUSE… What was that? What did you say? Yes…I’ll have another Reese’s Cup.

I HAVE THE UNCANNY ABILITY TO… fix anything but a broken heart.

I SIMPLY CANNOT LIVE WITHOUT… tough one, huh? Reese Cups!

EVER MEET ANYONE FAMOUS? For many years, we have attended the Clark Gable foundation birthday parties (Cadiz, Ohio) where I met many of the cast from Gone with the Wind, including Fred Crane, Rand Brooks, Cammie King, Butterfly McQueen and Patrick Curtis.

Hearing Loss Magazine has great stories and valuable information about hearing loss. It is a wonderful publication!

 





Hearing Loss Magazine: 2012 Recap

28 11 2012

The last issue in 2012 of the Hearing Loss Magazine (HLM), published by the Hearing Loss Association of America (HLAA), just arrived in member mailboxes last week. I design the bimonthly magazine and provide photography services to HLAA. Here is a recap of the issues published in 2012.

Tina and Tom Hamblin were the cover feature for the January/February 2012 issue. Tina contacted me in fall 2010 after seeing the wedding photos I shot for Todd and Abbie Hlavacek in September 2010. Todd and Abbie are also members of HLAA and Abbie wrote her cover story for the May/June 2008 issue (recapped here). Cover photo © Cindy Dyer

I first met Tina and Tom when they arrived for their engagement photo session at my favorite location to shoot, Green Spring Gardens, in Alexandria, VA in spring 2011. After we did our portraits around the garden, Tom started doing cartwheels (he’s a gymnastics coach) and I captured him in full motion—making it the first time I’ve ever photographed someone doing anything gymnastic. I captured him in his wedding finery doing some handstands and cartwheels on his wedding day as well! My colleague Ed and I photographed Tina and Tom’s wedding on October 8, 2011 in Kurtz Beach, Maryland.

I asked Tina and Tom if they would write a sort of “his and her” story for the magazine about their respective hearing loss, how they met, and how they support each other. The title of their article, “Taking the plunge,” refers to both the turning point in their friendship and their recent marriage. You can find Tina blog’s here and Tom’s all-things-gymnastic blog here. Their cover story is available in pdf format here: Tom&TinaHamblin Feature

Also in this issue: Audiologist Brad Ingrao focused on the best practices for hearing assessment and hearing aid fitting in Getting it Right the First Time: Best Practices in Hearing Aid Fitting; Gael Hannon showed us a practical look at information that would be helpful to those who have hearing loss in What the Professionals Should Tell Us; Michael Ann Bower discussed what people with hearing loss can do to avoid the misdiagnosis of dementia when hearing loss is the issue in Hearing Loss and Dementia; and Barbara Kelley interviewed young jazz singer Mandy Harvey in Musically Inclined.

The March/April issue featured the host city for the upcoming Convention 2012—Providence, Rhode Island. HLAA’s Director of Marketing and Events, Nancy Macklin, presented a comprehensive guide to the upcoming convention in this issue.

Also in this issue: Audiologist Brad Ingrao discussed cochlear implants in Plugged in for Sound: Cochlear Implants Today; Scott Bally outlined the Five Most Effective Speechreading Strategies; Renowned audiologist Mark Ross talked about hi HealthInnovations Hearing Aid Dispensing Program; Meredith Low, a pro at planning and making sure that the communication environment is arranged so she can enjoy the party as much as her guests, offered great tips in Welcome! Easy Entertaining for People with Hearing Loss; Pamela Selker Rak shared her experiences with hearing loss in Lost in Translation: How a “Lost and Found” Friendship Opened My Eyes to Hearing Loss; Lise Hamlin focused on HLAA’s efforts in Advocacy: A Few Hot Issues, and HLAA member Netegene Fitzpatrick crafted a special Word Search puzzle for her fellow members to solve.

Richard Einhorn, award-winning composer, was the cover feature for the May/June 2012 issue. In his article, Einhorn wrote about his sudden hearing loss and how, with his clever uses of existing technology, he continues to work and live well with hearing loss. You can read excerpts on my blog post here. For the full article, click on this link: Richard Einhorn

I had the honor and pleasure of photographing Richard in March 2012. Barbara Kelley (HLM’s editor-in-chief) and I met up with him at the Peabody Conservatory in Baltimore. After a great photo session, we dropped Richard off at his hotel and picked him up later to take him to the Meyerhoff, where his work, Voices of Light, was being performed by the Baltimore Symphony Orchestra, with Marin Alsop conducting. Einhorn composed the piece in 1994, inspired by the 1928 silent film, The Passion of Joan of Arc, directed by Carl Theodor Dreyer. Live performances accompany a screening of the film.

Voices of Light has been performed more than 200 times by major orchestras all over the world. It has been called “a great masterpiece of contemporary music” and “a work of meticulous genius.” The libretto is based on excerpts from a variety of ancient writings, most of it from Medieval female mystics, and scored for a small orchestra, chorus and soloists. For me, the performance was a haunting, incredibly moving and very profound visual and aural experience. You can learn more about Richard Einhorn on his website here. Cover photo © Cindy Dyer

Also in this issue: Barbara Kelley interviewed Richard Einhorn to learn more about his work and future projects; Therese Walden, president of the American Academy on Audiology, discussed the UnitedHealthcare® hi HealthInnovations hearing device benefit program in Self-Diagnosis, Self-Treatment: The Wave of the Future?; Brad Ingrao wrote about water-resistant hearing aids and cochlear implants in Jump Right In! Water-Resistant Hearing Technology; Lise Hamlin revisited the Americans with Disabilities Act 22 years later in Accessible Design for People with Hearing Loss; and Yoona Ha revealed the special bond with her grandmother in My Six-Million-Dollar Grandmother.

Laurie Pullins was the cover feature for the July/August 2012 issue. Back in February, right before my photography exhibit (Garden Muse: A Botanical Portfolio) opened at Green Spring Gardens, Laurie sent me a message that she would love to come see it in person (she’s been a big supporter and fan of my work for a few years now) and she was trying to coordinate a time when she could accompany her husband to the Washington, D.C. area on a business trip. It so happens that I had been catching up with her blog, Dance with Sound, and had just suggested to Barbara that we entice Laurie to write for the magazine. I pitched the idea to Laurie and said that if she could come up to see my show anytime in March or April, I could shoot the portraits of her for the feature then. We wanted to keep it a secret from even her closest friends so that she could surprise them; only her husband and children knew about it. Cover photo © Cindy Dyer

Laurie is as beautiful on the inside as she is on the outside and I am thrilled that she has a spotlight in the magazine with beautiful photos and her honest and inspiring writing. See Laurie’s feature on my blog post here or download the pdf here: Laurie Pullins Feature

Also in this issue: Brad Ingrao helps you understand your hearing loss and what you need to hear better in Beyond the Beeps: Needs Assessments and Outcome Measures; Lisa and Des Brownlie shared their experiences of their babies born with hearing loss in Two Children, Two Hearing Losses; Sam Trychin discussed research that has uncovered information about another built-in, inherited type of pain that also has survival value—social pain—in Hearing Loss and Social Pain; Lisa Tseng of hi HealthInnovations shows the company’s model for how to reach those who need hearing help in Accessible and Affordable Hearing Health Care; HLAA’s Director of Public Policy, Lise Hamlin, reveaks her personal experiences resulting from the fruits of HLAA’s labor in Newborn Hearing Screening: A Success Story; and Viola LaBounty expresses her improved hearing loss through her poem, Digital Technology: My World Alive.

Melissa Puleo Adams, a former San Diego Chargers cheerleader, was our cover feature for the September/October 2012 issue. I had the opportunity to meet and photograph Melissa when she was visiting her family here in Virginia in May. The title of her feature, Sixth Time’s a Charm, is in reference to her trying out six times to be a Charger Girl cheerleader. She persevered despite the rejections and made it on the sixth try. Her fellow Charger Girls were very supportive of her and her hearing loss. Melissa owns her own web and graphic design firm in California. You can see her web design work hereCover photo © Cindy Dyer  (Read Melissa’s full feature in my blog post here.)

Also in this issue: Audiologist Brad Ingrao provided an in-depth look at three alternative hearing systems in Middle Ear Implants and Bone Conduction Hearing Devices; HLAA’s Director of Marketing and Events, Nancy Macklin, revealed highlights in her Convention 2012 Wrap-up; Susan Clutterbuck wrote about the results of the EARtrak survey and if they reveal whether or not consumers’ opinions are being heard by their hearing health care providers in Improving Health Care—Make Your Voice Heard!; Ronnie Adler shared great stores about how Walk4Hearing Funds are put to good use in local communities in Rewarding Great Ideas—The Benefits of the Walk4Hearing; and Scott J. Bally showed how NVRC is changing lives in the community in NVRC: A Model Community Center Improving Communication.

Marisa Sarto was the cover feature for the November/December 2012 issue. I met Marisa in Providence, R.I. this past June during HLAA Convention 2012. I was going to profile her for our Seen & Heard column but after learning about her photo book project, we decided to make her autobiographical story a main feature for the magazine. I photographed her one afternoon in a park near the hotel. Cover photo © Cindy Dyer

Marisa’s inspiration for her book-in-progress, Hear Nor There: Images of an Invisible Disability, came from her experiences as a woman growing up with a hearing loss that made her feel self-conscious and set apart from others. The project will be a documentary monograph, showcasing photographs and stories of individuals of varying ages, ethnicities and genders and their challenges of living with a hearing loss. Learn more about the project on her website here and sample images and narratives here. Download and read her feature article here: Marisa Sarto Feature

Also in this issue: Audiologist Brad Ingrao’s article, Better Hearing, Better Health, explored the relationship between hearing loss and health-related quality of life; HLAA’s Director of Marketing and Events, Nancy Macklin, showed us why It’s Time to Head West! with her Convention 2013 Sneak Preview; Hayleigh Scott, owner of Hayleigh’s Cherished Charms, and Netegene Fitzpatrick proved there isn’t a generation gap among people with hearing loss in their feature, A Unlikely Friendship; HLAA’s Director of Public Policy, Lise Hamlin, reported good news in Shopping for Phones; long-time HLAA member Vern Thayer explained why he is Lucky that he discovered HLAA in 1983; and HLAA members George Kosovich and Marisa Sarto were both profiled in Seen & Heard.

 





Seen & Heard: George Kosovich

15 11 2012

George Kosovich, a member of the Hearing Loss Association of America (HLAA), just made his Seen & Heard profile debut in the November/December 2012 issue of Hearing Loss Magazine, which just arrived in member mailboxes. Other members previously profiled were Danielle NicosiaJohn KinstlerJudy Martin, Anne TaylorSam SpritzerJeff BonnellEloise SchwarzGlenice SwensonLaurie PullinsRosemary Tuite and Kathy BorzellTommy Thomas and Marisa Sarto.

Join the Hearing Loss Association of America!
Do you have a hearing loss or know someone who does? Consider membership in the Hearing Loss Association of America. Student annual dues are $20, individual annual dues are $35, and family/couple annual dues are $45. Fees outside the U.S. are slightly higher. All memberships include discounts on hearing-related products, convention and special event early bird discounts, AVIS and Alamo car rental, and the award-winning Hearing Loss Magazine. Sign up for membership here.

Photo © Cindy Dyer. All rights reserved.

George Kosovich

Rockville, MD / Born December 10, 1941, Bingham Canyon, UT

MY HEARING LOSS… I had a hearing loss in childhood, but it wasn’t discovered right away. In elementary school, I started wearing a body aid and hated it. Now, I use both a cochlear implant and a hearing aid and love it.

SAGE ADVICE FOR SOMEONE NEWLY-DIAGNOSED WITH HEARING LOSS… Get that hearing aid—you don’t know what you’re missing!

HARDEST THING I’VE EVER DONE… School was hard—all the way from elementary school through my two master degrees!

IN MY SPARE TIME… I play golf, tennis and pool.

MY LITTLE-KNOWN TALENT IS… dancing.

I HAVE A WEAKNESS FOR… chocolate peanut butter ice cream.

I WOULD LOVE TO MEET… the angel Gabriel.

I MISS… my brother, Jerry.

I AM… friendly, lovable and handsome.

FAVORITE COLOR? Purple

MY MOTHER TAUGHT ME… not to smoke cigarettes. The one time I did try when I was 10, she caught me. That day, I smoked until I was sick and told her. She told me I was not going to find any sympathy from her. I suffered that time but learned my lesson and I never smoked again.

MY FATHER TAUGHT ME… the basics of football, and then was a big support to me when I was playing football in high school and college.

WORKING NINE TO FIVE… OSERS at the U.S. Department of Education, Washington, D.C.; VR counselor in Portland, OR; juvenile center counselor, Portland, OR; Short order cook at the Sheraton, Portland, OR; Newspaper delivery boy, Portland, OR

I HAVE A FEAR OF… guns. One time I shot a guy. I was around 12 years old, working at a berry picking farm in the summer. It was in the evening and we had gone back to the workers’ cabins. My brother and a guy also named Jerry were in the cabin. I was playing around with a rifle and I thought I took all the bullets out, but when I pulled the trigger, a bullet hit him in the thigh. I was shocked. My heart was racing. We carried him out down to the house which was quite a ways down. We took him to the hospital in a car—it was the longest ride of my life. The guy was okay once patched up, but he couldn’t play football for a year. And I never played around with a gun again!

IF I RULED THE WORLD… everyone would have a smile on their face!

WHAT IS THE KINDEST THING ANYONE HAS EVER DONE FOR YOU? Love me

GREATEST ACCOMPLISHMENT? Being a father

HOW DO YOU WANT TO BE REMEMBERED? As a good guy

Hearing Loss Magazine is great! I like the stories about people and how they deal with hearing loss, but I also like the information about technology that makes our lives easier.





Marisa Sarto: The Hear Nor There Project

14 11 2012

Marisa Sarto wrote the cover feature article for the November/December 2012 issue of Hearing Loss Magazine, published bimonthly by the Hearing Loss Association of America (HLAA). Marisa recently graduated from the University of Wisconsin-Madison with a degree in film on a Posse Foundation scholarship. She has worked as an intern for an acclaimed documentary artist and as an intern for a television production company and is currently pursuing her passion—photography and photo/visual journalism—in Los Angeles.

I met Marisa in Providence, R.I. this past June during the Hearing Loss Association of America annual convention. I was going to profile her for our Seen & Heard column but after learning about her photo book project, we decided to make her story a main feature for the magazine. I photographed her one afternoon in a park near the hotel.

Marisa’s inspiration for her book-in-progress, Hear Nor There: Images of an Invisible Disability, came from her experiences as a woman growing up with a hearing loss that made her feel self-conscious and set apart from others. The project will be a documentary monograph, showcasing photographs and stories of individuals of varying ages, ethnicities and genders and their challenges of living with a hearing loss. Learn more about the project on her website here and sample images and narratives here.

Download and read her feature article for Hearing Loss Magazine here: Marisa Sarto Feature

Also in this issue: Audiologist Brad Ingrao’s article, Better Hearing, Better Health, explores the relationship between hearing loss and health-related quality of life; HLAA’s Director of Marketing and Events, Nancy Macklin, shows us why It’s Time to Head West! with her Convention 2013 Sneak Preview; Hayleigh Scott, owner of Hayleigh’s Cherished Charms, and Netegene Fitzpatrick prove there isn’t a generation gap among people with hearing loss in their feature, An Unlikely Friendship; HLAA’s Director of Public Policy, Lise Hamlin, reports good news in Shopping for Phones; long-time HLAA member Vern Thayer explains why he is Lucky he discovered HLAA in 1983; and HLAA members George Kosovich and Marisa Sarto are both profiled in Seen & Heard.

Photo © Cindy Dyer. All rights reserved.


Marisa is helping spread the word about “100 Portland,” a movement to recruit 100 young adults with hearing loss to gather at the HLAA Convention 2013 in Portland, Oregon. Check out the video below to learn about Marisa’s experience at Convention 2012 in Providence, Rhode Island and an introduction to “100 Portland” and its mission. “100 Portland” also has a Facebook page.





Seen & Heard: Rosemary Tuite and Kathy Borzell

18 10 2012

Siblings Rosemary Tuite and Kathy Borzell, both members of the Hearing Loss Association of America (HLAA), made their Seen & Heard profile debut in the September/October 2012 issue of Hearing Loss Magazine, along with Rosemary’s service dog, Janet. I photographed them at Convention 2011 in Washington, D.C.

Rosemary Tuite

WHAT I LOVE MOST ABOUT MY SISTER KATHY BORZELL… Kathy and I have had a support system going with each other because we both have hearing loss. I believe it has made us even closer than we would have been. She has been an incredible support to me and I think she feels the same about my support of her.

WHAT I LOVE MOST ABOUT MY SERVICE DOG, JANET… Janet has changed my life. I sleep better knowing she will be there if need be and she is my comfort and strength when I get into a stressful situation due to my hearing loss. She has become a support to both my husband and I as he has a physical disability that she understands.

MY HEARING LOSS… I’m not sure when my hearing loss was first discovered, but it was probably in my late teens. There was severe-to-profound hearing loss in our family; mine was considered mild so I didn’t get hearing aids until I was 40 even though I needed them years before. I wore them religiously once I got them and was implanted with my first cochlear implant in November 2007 and my second in September 2010.

SAGE ADVICE FOR SOMEONE NEWLY-DIAGNOSED WITH HEARING LOSS…
Get with peers, join HLAA and a local HLAA Chapter.

MY FUNNY HEARING LOSS MOMENT… When I received my first cochlear implant, I was waiting in the audiologist’s office at Mayo Clinic for my second mapping. I thought I was doing so well and could hear most of all the conversations around the waiting room except for two elderly ladies sitting on the other side of my husband, Jim. I leaned to Jim and said, ‘I can’t understand a word those two people are saying.’ He looked at me and said, ‘Rose, maybe because they are speaking Spanish.’ We were both laughing so hard; my audiologist came out to get us and said this has to be about a CI moment. There are been many CI moments that bring a smile to my face.

DISADVANTAGES OF A HEARING LOSS… When you can’t hear, and you are by yourself in a room full of people, it is so lonely.

ADVANTAGES OF A HEARING LOSS… the incredible people I have met because of my hearing loss, the smile on someone’s face when you give them advice about their own loss that they never knew before, or just the look on their face when they know you truly understand

WHEN I GREW UP, I WANTED TO BE… a teacher.

FAVORITE CHILDHOOD MEMORY… Christmas was my favorite time, I was about three years old; but another favorite memory is sitting on my dad’s lap in the evening and he would sing what I called the ‘Moon Song,’ I don’t remember what the real title was. I can remember the chair we sat in each night outside on
the patio.

FIRST THING I BOUGHT WITH MY OWN MONEY… clothes! I love clothes and my mom made almost all of my clothes when I was young.

HARDEST THING I’VE DONE… let my children make choices that I knew would not be in their best interest

FIRST MEMORY OF REAL EXCITEMENT… Christmas morning. I would get so excited I often got sick on Christmas day from all the excitement.

SOUNDS I LOVE… with my cochlear implants, it’s the sound of everything. I never believed I would hear this well.

IN MY SPARE TIME… I love to play golf or read.

I MOST DEFINITELY AM NOT… shy!

I MISS… Those who have gone before me. I also miss the things that my husband and I did together. He was 13 when he became an amputee and has worn prosthesis for 63 years. We found things to do together; he loved golf, so I learned it. We don’t golf anymore but we go out more to be with people as I can now better communicate with others.

HAPPINESS IS… hearing; being married to a wonderful husband for 46 years, enjoying family and friends

PEOPLE WOULD BE SURPRISED THAT I… really cherish my time alone.

MY LITTLE KNOWN TALENT… If I have one, I really am not aware of it.

CITY, BEACH, COUNTRY OR MOUNTAINS?… Mountains for sure—I feel peace and serenity when I can
see mountains.

FAVORITE PLACE TO BE… home

I HAVE A WEAKNESS FOR… chocolate.

I WOULD LOVE TO MEET… Jesus, but if I met Him when he was on this earth, would I have really known Him at that time?

FAVORITE SEASON… Fall, because I love and marvel at the colors each day brings. I love the change of seasons and Asheville has all of them.

I COLLECT… Longaberger baskets.

YOU’VE JUST WON A $1,000 SHOPPING SPREE TO A FAVORITE STORE… I’d go to Chico’s and buy clothes.

FAVORITE COLOR?… Green, all shades.

WORKING NINE TO FIVE… babysitter, secretary, homemaker, gift shop sales, volunteer (more volunteer jobs than any paying jobs)

FAVORITE FOODS… pizza, lasagna, mountain trout, lobster tail, chocolate malts

LAST BOOK I READ… A Lucky Irish Lad by Kevin O’Hara

MY FRIENDS WOULD SAY I AM… a good friend.

MY MOTHER TAUGHT ME… that I was not better than anyone else in God’s eyes.

MY FATHER TAUGHT ME… to pray.

GET ANYTHING GOOD IN THE MAIL LATELY? A memorial program and pin for someone dear to me whose memorial service I could not attend

THE BEST THING SINCE SLICED BREAD… This makes me laugh as I have said it so many times—my iPad!

I HAVE A FEAR OF… heights when there are no barriers.

PHRASE I OVERUSE… “It is what it is.”

I SIMPLY CANNOT LIVE WITHOUT… my faith.

EVER MEET ANYONE FAMOUS?… Arnold Palmer

PET PEEVE… People think you hear everything because you wear hearing aids or cochlear implants.

MY MOTTO... “Let go and let God!”

GREATEST ACCOMPLISHMENT… my children

Hearing Loss Magazine has many articles of interest to people with all levels of hearing loss It keeps going on from me, I share it and know the people I share it with also share it.

______________________________

Kathy Borzell

WHAT I LOVE MOST ABOUT MY SISTER, ROSEMARY… She’s made my life easier being able to share my hearing loss journey with her. She has always been there for me.

MY HEARING LOSS… I was about 19 when it was noticed that I wasn’t hearing normally. My father and my oldest brother were also hard of hearing so I just figured I had ‘it’ too. Little did I know at that time how much ‘it’ would impact my life!

SAGE ADVICE FOR SOMEONE NEWLY-DIAGNOSED WITH HEARING LOSS… Find support through others who have hearing loss. Your hearing loss professional can be wonderful and helpful to you, but there’s nothing more empowering than being in a safe environment of your peers. You’ll be so much better equipped to deal with life in the hearing world!

MY FUNNY HEARING LOSS MOMENT… I was in my late 20s and at a cocktail party with my husband. I was having a conversation with a gal who was talking about being a “Buddhist.” She told me she had a special room in her house where she practiced. The conversation went on, and I just nodded my head (knowing nothing about Buddhism!) when I finally realized she was telling me she was a flutist. Now that made sense!
We’ve done a lot of laughing at this over the years.

DISADVANTAGES OF A HEARING LOSS… it impacts every aspect of your life. Until you come to terms with hearing loss, it can eat you up.

ADVANTAGES OF A HEARING LOSS… Silence can be very nice.

WHEN I GREW UP I WANTED TO BE…I had no clue.

FAVORITE CHILDHOOD MEMORY… Christmas—I am the youngest of five children, and my siblings spoiled me so much.

THE BEST/WORST GIFT I’VE RECEIVED… my hearing loss

FIRST THING I BOUGHT WITH MY OWN MONEY… my first car—a Toyota Corolla that was a lemon, but I loved it anyway

HARDEST THING I’VE EVER DONE… say goodbye to my late brother

FIRST MEMORY OF REAL EXCITEMENT While I can’t remember a specific time, I’m sure it must have been at Christmas time.

SOUNDS I LOVE… the wind blowing and birds chirping.

IN MY SPARE TIME… I play golf, read, cook, take care of my plants and garden.

I MISS… listening to John Denver without assistive equipment.

HAPPINESS IS… feeling okay with oneself.

IF YOU COULD LIVE ANYWHERE IN THE WORLD FOR A YEAR, WHERE WOULD IT BE? Right here, where I am, in these beautiful mountains

I WISH I HAD A TALENT FOR…line dancing.

YOU JUST WON THE $10 MILLION LOTTERY. WHAT HAPPENS NEXT? I go into hiding.

I HAVE A WEAKNESS FOR… pizza and chocolate.

I WOULD LIKE TO MEET… Joe Namath.

FAVORITE SEASON… Fall—it’s just so gorgeous here and, oh, football season!

YOU’VE JUST WON A $1,000 SHOPPING SPREE TO A FAVORITE STORE! Chico’s for clothes!

FIVE FAVORITE SONGS… Looking for Space by John Denver, Carolina on My Mind by James Taylor, Kathy’s Song by Simon & Garfunkel, Up on the Roof by James Taylor and No One in the World by Anita Baker

MY KIDS HAVE TAUGHT ME… that I’ve done a better job of being a mother than I give myself credit for.

BEST THING SINCE SLICED BREAD… sliced pizza

I HAVE A FEAR OF… driving over bridges.

I REALLY SHOULD STOP… shopping online.

PHRASE I OVERUSE… can’t repeat it here

SOMETHING THAT YOU HAVE IN YOUR HOME THAT YOU ARE SURE MOST PEOPLE DON’T… a Shake-Awake alarm

MY THREE FAVORITE POSSESSIONS… my engagement ring, my home, my dog

FAVORITE QUOTE… “Bless the beasts and the children—they have no voice, they have no choice.”

EVER MEET ANYONE FAMOUS? Donald Trump—while working at The Bowery Savings Bank in Manhattan

MY LONG-TERM GOAL IS… to grow old gracefully.

PET PEEVE… Sitting in a noisy restaurant or bar or airport where there is a TV but no captioning. Then again, the rest of the crowd is as clueless as I am.

I WANT TO BE REMEMBERED AS… a caring person who tried to make a difference.

GREATEST ACCOMPLISHMENT? Raising my kids—they’re good people





The Indomitable Spirit of the Kennedy Center’s Betty Siegel

2 08 2012

Scott J. Bally’s article, The Indomitable Spirit of the Kennedy Center’s Betty Siegel, was featured in the November/December 2011 issue of Hearing Loss Magazine, which I design bimonthly for the Hearing Loss Association of America (HLAA). I photographed Betty in my studio last fall, and discovered we share a lot of common interests. After our photo session was over, I told her that she and her husband are now on our guest list for future parties! Below is Bally’s article, reprinted with permission from HLAA.

At the heart of the John F. Kennedy Center for the Performing Art’s efforts to meet the needs of individuals with disabilities is Betty Siegel, nationally recognized leader for accessibility to the arts.

Wicked was beyond belief. I had given up on attending anything like a play or musical. It was like being in the fairy tale. I could feel the music—understand the play—and be a part of a magical evening that I had long since given up. Now I see this is just the beginning!”
Suzannah “Bay” Dirickson, HLAA member, Richmond, Virginia

A broad smile of accomplishment widens across Betty Siegel’s face when she considers the Kennedy Center Accessibility Office’s success this past summer when 600 attendees of the HLAA Convention took in a performance of the blockbuster musical Wicked (click here to learn more about Wicked). This standing-room-only Broadway hit which explores the back story of The Wizard of Oz was a perfect fit for convention goers as it addresses and brings new insights into the challenges of being different.

The event attracted the largest number of people with hearing loss ever to attend a performance at the John F. Kennedy Center for the Performing Arts. The challenges for the Center’s Accessibility Office were daunting and patron needs were successfully met with seven captioning screens placed at strategic points throughout the Kennedy Center Opera House and masterfully guided by captioner David Chu, two types of gratis assistive listening technology to select from, a team of specially-selected interpreters, an occasion-specific crafted welcome and orientation letter and a staff of 36 ushers who had undergone sensitivity training to help this contingent have the most complete theater experience possible. Feedback provided to both the Kennedy Center and HLAA pronounced it a resounding success! Betty Siegel, who orchestrated the efforts, called the achievement “absolutely thrilling!”

From the Inside Out
At the heart of the Kennedy Center’s efforts to meet the needs of individuals with disabilities is Betty Siegel, nationally recognized leader for accessibility to the arts. Betty Siegel’s three-person staff has a broad variety of responsibilities as part of the education program.

The Kennedy Center keeps its policy simple and to the point. “The Kennedy Center welcomes persons with disabilities.” Betty thinks it needs no further explanation.” That says it all!” she states emphatically. It also gives her the ability to widen the scope of her office in creative and practical ways that achieve this objective.

Betty looks back to 1989 when she started at the Kennedy Center. She reflected on the Center’s slow emergence from viewing the accessibility staff as the fly in the ointment (“eyes rolled when we walked into a meeting”) to being an integral part of the institutional culture to whom others look for counsel and advice. The overriding attitude at the Kennedy Center is that “accessibility is just something that we do.” And they do it well.

Betty notes that now, without her urging, consideration is given to persons with disabilities in every effort the Center undertakes including staffing and staff training, renovation of the facilities and planning for meeting patron needs. “It just happens,” says Betty with a gleam of personal satisfaction in her eye. The Center has both in-house programs so that the Center’s cultural offerings are accessible to the greater Washington, D.C. community, but also leadership training for institutions both nationally and internationally.

The Kennedy Center’s Accessibility Office has become one of the nation’s primary resources for cultural institutions in the area of disabilities. They are able to provide solutions for technology challenges in theaters, direction for incorporating individuals with hearing loss and other disabilities in the arts, and understanding of the legislation that protects the rights of individuals with disabilities who attend public cultural institutions.

Meeting the Challenges
The greatest challenges for Betty and her colleagues, Jessica Swanson, Andrea Miller, and newcomer, Clinton Bowman, include keeping up with the rapidly-changing technology available to theatergoers as well as the compatibility between group and individual technologies. As the director for Very Special Arts (VSA) and Accessibility, Betty’s responsibilities have broadened as a recent Kennedy Center reorganization has brought the VSA program under Betty’s capable wings. With six new staff members and a whole new program to oversee, Betty seems undaunted at the prospect noting “I thrive on new challenges,” especially those for which she can implement “socially sustainable design.” A group of volunteers provide support to the office.

The challenge here, according to Betty, is that when you meet expectations, the expectations of patrons move to a higher level. “You need to exceed their expectations at every turn. We need to be doing things better and more effectively on every front.” No resting on laurels although pausing to appreciate the Wicked experience is cause for some satisfaction for Betty and her team.

“Building new audiences…and keeping the ones you have” is a dual challenge described by Betty. A significant portion of arts’ audiences are baby boomers. They are all aging. With aging, many individuals will develop some degree of sensory or mobility disability that needs to be addressed so that these individuals are able to continue their access to and enjoyment of the arts.

Networking is a key factor in the success of the Center’s programs. Each year since 2000, the Kennedy Center has hosted its LEAD program, Leadership Exchange in the Arts and Disability. Administrators from cultural institutions across the country discuss institutional cultural arts and disability issues. Their shared common goal is “the desire to create accessible cultural arts programs that are inclusive of people with disabilities and older adults.”

Betty describes useful presentations as well as a vigorous exchange of ideas between venues. The Department of Justice supports the efforts by frequently providing speakers who give updates on legislation related to persons with disabilities as it has become clarified through court cases, and the most recent updates on the Americans with Disabilities Act.

Betty noted that ticketing regulations has recently been a topic of particular interest among participants. Other highlights of their annual conference include accessible performances, technology demonstrations, and resource rooms.

The Kennedy Center
The Kennedy Center is the nation’s busiest performing arts facility and hosts approximately 3,000 performances annually for audiences totaling nearly two million people. This does not include individuals who tour this national monument to see its Edward Durrell Stone designed cutting edge architecture and furnishings gifted from nations around the world without seeing a performance. The Center, now in its 40th season, has already established a reputation for excellence in meeting the needs of persons with disabilities.

Individuals with hearing loss find several accommodations to meet their needs. Assistive listening technology for performances is available at no charge to patrons. There are captioned performances for every play and musical in the Eisenhower Theater and the Opera House, the Center’s largest venues. The other theaters (the Kennedy Center has six, plus the Millennium Stage which provides free performances in the Grand Foyer 365 days a year) will provide captioning when requested with reasonable notice.

Recently a patron at a musical explained, “I don’t think I have much of a hearing loss, but the [Infrared] earphones brought the actors voices past the orchestra so I could actually understand the words.” The Center also offers audio-described performances for those with vision loss and signed performances for people who use sign language.

Cultural and sensitivity training for the more than 500 ushers who work the performances enable the front line “redcoats” to meet the immediate needs of patrons with disabilities and older adults. Each theater also has “accessibility ushers” at every performance whose primary responsibility is to assist patrons with mobility and other accessibility needs.

When asked how many patrons benefit from the Center’s efforts, Betty shakes her head and notes that it is “virtually impossible to tell.” She continues, “Patrons with disabilities do not need to identify themselves to Kennedy Center staff to take advantage of accommodations. Although theater managers report on some services provided such as large-print programs or wheelchair use, many patrons are self-sufficient and slip by unnoticed. Hearing loss is, of course, invisible so we are uncertain as to how many people who are hard of hearing and deaf actually attend captioned or signed performances.”

Cognitive disabilities, mental illnesses or autism and such medical challenges as heart conditions or arthritis, are also difficult to identify. Even statistics on assistive listening device use are not reliable because individuals without hearing loss also might use them. A broad estimate by Betty puts the figure at “easily 25,000 patrons, but it is probably more.” According to the U.S. Census Bureau, one in ten Americans has a mental or physical disability, a figure that supports her assumption.

From Whence She Came
When asked about Betty’s professional background she laughs. She confessed that she started out in costume design…but “without much passion.” Her professional path kept moving her toward working with people. She discovered the joys and challenges of working in the area of disability access to the arts at the Arena Stage, a regional theater venue in Washington, D.C. where she was a theater manager in the early 1980s. She found it rewarding to “make a difference in the lives of theatergoers with disabilities” and helping them to be an integral part of the cultural event, rather than limited spectators.

For the efforts of the Kennedy Center’s Accessibility Office, Betty accepted HLAA’s National Access Award 2011 at the HLAA Convention for their contributions toward making the arts accessible to persons with hearing loss. “Arts should not shy away from the issues [which confront persons with disabilities].” From Betty’s viewpoint, she is immersed in those issues every single day…and loving every minute of it.

Scott J. Bally, Ph.D., M.S.W., CCC-SLP, recently retired from Gallaudet University where he was a full professor in both the speech-language pathology and audiology programs in the department of hearing, speech and language sciences. He has worked in public school, hospital, deaf institute, community clinic and university settings in a career spanning more than 35 years. He has written numerous articles and book chapters on the biopsychosocial effects of hearing loss and has presented to both professional and consumer organizations.

Dr. Bally has also worked at the John F. Kennedy Center for the Performing Arts in Washington, D.C., where he is head usher at the Opera House and is regularly called on to work with patrons who having hearing loss at captioned performances in the Opera House and the Eisenhower Theaters. He can be reached at sbally@hearingloss.org.

Patron services at the John F. Kennedy Center for the
Performing Arts through the Accessibility Office:

Captioned performances and events
Assistive listening devices
Sign language interpreted performances and events
Audio-described performances and events
Braille and large-print playbills (other materials upon request)
Online listings of accessible performances
Specially-priced tickets
Accessible tours
Wheelchair accessibility
Transportation and parking accommodations
Courtesy wheelchairs
Curb-to-seat service
Phone and e-mail information services

Do you have a hearing loss or know someone who does? Consider membership in the Hearing Loss Association of America. In the U.S., student annual dues are $20, individual annual dues are $35, and family/couple annual dues are $45. All memberships include discounts on hearing-related products, convention and special event early bird discounts, AVIS and Alamo car rental, and the award-winning Hearing Loss Magazine. Sign up for membership here.





Laurie Pullins: Dances with Sounds

17 07 2012

Laurie Pullins is the “cover girl” for the July/August 2012 issue of the Hearing Loss Magazine, which I design and produce bimonthly for the Hearing Loss Association of America (HLAA).

Here’s how Laurie came to be the latest HLAA member to grace the magazine’s cover. Back in February, right before my photography exhibit (Garden Muse: A Botanical Portfolio) opened at Green Spring Gardens, Laurie sent me a message that she would love to come see it in person (she’s been a big supporter and fan of my work for a few years now) and she was trying to coordinate a time when she could accompany her husband to the Washington, D.C. area on a business trip.

It so happens that I had been catching up with her blog, Dance with Sound, and had just suggested to Barbara Kelley that we entice Laurie to write a feature article for the magazine. Barbara is the editor of the magazine and HLAA’s deputy executive director (she is a Sneezeguard Heiress as well—check out her hospitality blog here). I pitched the idea to Laurie and said that if she could come up to see my show anytime in March or April, I could shoot the portraits of her for the feature then. We wanted to keep it a secret from even her closest friends so that she could surprise them; only her husband and children knew about it.

She was here about three days and in addition to getting some beautiful shots of her at a local park and in my studio, she was able to do the tourist thing, too. Michael and I took her to the Air Force Memorial and the Pentagon Memorial and we did quite a bit of drive-by sightseeing as well. Laurie is an avid photographer and a fellow Nikonian. We had such a great time during her visit and she was on pins and needles with excitement about keeping it a secret, especially to her friend Jennifer Thorpe, whom she sees every month when Jen comes to her city to work. Even Jen didn’t know about it until the issue was released!

Laurie is as beautiful on the inside as she is on the outside and I consider her a very dear friend now. I appreciate her support of my work and am thrilled that she has a spotlight in the magazine with beautiful photos and her honest and inspiring writing. Much love for and appreciation of you, Laurie!

Below is Laurie’s feature in its entirety or you can download the pdf here: Laurie Pullins Feature

Dances with Sounds by Laurie D. Pullins

We enter this world with nothing and leave it with nothing. In between there is a “dance” called life. What we do with that dance defines who we are and how we embrace the world around us.

It’s 11:34 a.m. and I see the rain falling on the pavement outside. I’m enamored by the glitter of each raindrop as it splatters in the puddles between the uneven blocks of sidewalk; I’m compelled to go outside and play. As I dance in the puddles, weaving through the trees lining the sidewalk, I catch a glimpse of a small cat pouncing through the grass and I am again compelled to follow after it.

It is springtime in 1959 and as a small child collecting rain and grass all over my tiny, wet feet, I couldn’t be happier. Living in a small town in upstate New York, there is not much to hear on a daily basis, with only a grocery store and a post office as the main businesses of the town. I am like a sponge soaking up the new information being presented to me and I don’t even realize that I am missing the noise of my surroundings, until I take an unexpected path and darted across the street, barely being missed by an oncoming car. My mother, Betty, calls out to me and I simply do not respond. Here begins my “Dance with Sound…”

EARLY YEARS
I was the first child for my parents and was full of mischief and was often disobedient. By the time I was 18 months old they became uneasy about my lack of speech but did not connect it with hearing loss. Even though I was not verbalizing like other children my age, I was highly observant and always seemed to notice things first before anyone else did.

My severe-to-profound hearing loss was diagnosed at the age of two, shortly after the “running across the street after the cat” incident. My parents were told that I was deaf—not completely so, but to a degree that I would probably never learn to speak normally or understand spoken language without a great deal of therapy and training. Their dreams were shattered and they were deeply distressed and discouraged when they heard the words “bilateral,” “congenital,” “sensorineural.” It was suggested that I could be sent to an institution for the deaf where I would learn sign language as a means of communication. This choice usually meant that children sent there never learned to talk and communicate normally.

Shortly after meeting with an audiologist and psychologist at Children’s Hospital in Buffalo, they were encouraged because I still had some residual hearing and had been responding to training and voice stimuli. With extensive effort and training I could possibly be mainstreamed into the hearing world. From that moment on, they were focused on guiding me through the long and difficult process of learning to communicate verbally.

They were naively optimistic and unaware about the challenges that were ahead but they persevered. They knew they did not want me to be trapped in a world of silence. It was unconventional in the late 1950s and early 60s to teach children who were hard of hearing or deaf to speak.

I began therapy three times a week after my hearing loss diagnosis. I was fitted with my first hearing aid, which was a bulky body aid that I wore on my chest. After the birth of my brother, we moved from New York to Ohio. I continued with speech therapy three days a week at the Speech & Hearing Center in Derby Hall at Ohio State University until I started public school. There was no organized program for deaf children but I was fortunate to have enthusiastic therapists.

My father credits my mother, a teacher, for ensuring my speech and hearing training and spending hours on end with me. She enrolled in the John Tracy Correspondence course at home and got a special packet each month. This program gave many practical suggestions and encouragement and answered many questions. We would sit at the kitchen table every day going through the scrapbook that she made with various words and matching pictures cut out of magazines and catalogs.

At the age of five, I entered the deaf program in the Columbus public school system for kindergarten. My first teacher was Mrs. Card, who was the wife of the director of Deaf Education. I vividly remember sitting on her lap in front of a mirror with my hand on her throat, trying to imitate and form the sounds and words that she was making. I was reading at the third grade level by the time I entered first grade because I had to learn to read in order to learn to speak. I was mainstreamed in the public school systems from first grade on and had speech therapy through the eighth grade.

FAMILY LIFE
I had the privilege to grow up in a loving home. My family included my parents, Ed and Betty Royer, my two brothers, Dan and Doug (who was later diagnosed with a hearing loss), my sister, Kathy, two sets of grandparents, numerous aunts, uncles, and cousins who did everything within their power, no matter what the sacrifice was, to include me in the hearing world that was so familiar to them. They were great “therapy” for me! (The Royer family, from left, back: Kathy, Doug and Laurie; left, front: Danny, mother Betty and father Ed)

Still, the challenge of growing up as a child with a hearing loss in a hearing world was overwhelming and frustrating for me at times. I didn’t fit in the hearing world. I didn’t fit in the deaf world either because I did not know any sign language. I was fortunate to have good, understanding teachers. I even had a science teacher who shaved his mustache so I could read his lips!

As a teenager in the 60s and 70s, life was hard. Peer pressure reared its ugly head and I felt isolated. I went to a large high school in Centerville, Ohio, with more than 550 students in my graduating class. I had very few friends because I “talked funny” and couldn’t hear very well. I contemplated suicide several times but worked through my issues with the help of my support system. I couldn’t use the phone and even if I wanted to communicate with someone, I had to do it by mail or in person.

I just wanted someone to listen to me and validate my feelings. I wanted to have a sense of belonging. Thankfully, I had a wonderful family. However, not every teenager has that in today’s world. It was a struggle to have a conversation in the dark or hang out with a group of friends when multiple people were speaking. I knew firsthand the frustration of trying to understand what people were saying when I could not read or see their lips.

I also knew what it was like to misunderstand others and be misunderstood. It was difficult to meet new people because they just did not understand or did not want to take the time to talk to me. I was often labeled as a snob because people did not understand that I did not hear them when they called out to me. I had a small circle of friends, but still felt lonely because I was not always included in their activities. I had a few boyfriends but was never invited to a high school dance or prom. I immersed myself in books and music. I took swimming lessons and joined a synchronized swimming team, took piano lessons, wrote poetry, took gymnastics, learned baton twirling, and was involved in my youth group at church and Girl Scouts. I also had several regular babysitting jobs in the neighborhood. Deep down in my heart I wanted to get married and have a family, but I did not think it was possible with a hearing loss. A part of my world was taken away from me because it was a common misconception of our society at that time that not being able to hear well would hinder me from having a normal life. I became good at bluffing and hiding my hearing loss.

COLLEGE AND MARRIED LIFE
After graduating from high school in 1975, I was determined to start a new life with new friends and new goals. As I entered college that fall with a full scholarship, my plan was to leave the past behind and focus on getting my college degree in accounting so that I could have a career, travel and be independent. There were no accommodations for students with hearing loss, so I had to work twice as hard to “get the message.”

The freshman classes had at least 150 students and were in large auditoriums, making it difficult to take notes and read lips at the same time. But, the best thing that happened to me that first year was meeting my husband, Steve Pullins, who was a senior at the time.

My hearing loss was never an issue for him and he was patient and kind (and still is!) dealing with it. My mother knew he was serious about our relationship when he built me a bookcase for my books as a Christmas present!

Steve and I were engaged the following spring and married in November 1976. Steve served as an officer in the U.S. Navy right out of college. We moved around quite a bit the first few years of our marriage. This made it difficult for me to continue with my college education. Every time we moved, I transferred my credits and enrolled in classes. After a professor told me that I needed psychological help because I could not understand her (another misconception), I dropped the class and put my college education on hold with a promise to my parents that I would return someday to finish my degree. (Left: Steve and Laurie on their wedding day, November 13, 1976)

IN THE WORKPLACE
In 1997, I decided to get a part-time job to help with our finances. It was a scary time for me because I had not worked with the public in a long time and knew that I faced many challenges. Among other things, I needed a position that did not require using the phone. I found a job working as a teller in a credit union. I had to ask customers to face me so I could read their lips. The staff and my co-workers were supportive and helped me when they could. This renewed my desire to return to school in my 40s. (Laurie with her siblings in 2006, from left—Doug, Kathy and Dan)

When I enrolled at the University of Tennessee the Office of Disability Services contacted me. They offered to provide sign language interpreters for my classes. When I told them that I was oral and did not sign, they told me that they had transcribers available. Two transcribers came to every single one of my classes with two computers. I had a computer in front of me and they had the other one. The transcribers used a special program and typed almost word for word everything that was said in class. I could read everything on the screen in front of me (and could sit anywhere in the classroom) and participate. After class, the transcript was saved in a file and e-mailed to me for my notes. I had the best notes. As an added bonus, at my graduation everything was transcribed for me (and others) on the Jumbotron in the stadium! I was glad I waited to return to college when I did because more than 25 years ago there were few resources available for people with hearing loss.

My mother lost her battle with pancreatic cancer in 1992, but I kept my promise and graduated from college in 2003. I wore her picture on my gown as I walked across the podium. Mom was always there for me. And she still is, in a way. I truly believe she is my guardian angel, watching over all of us.

A RICH FAMILY LIFE
Steve and I have been blessed with four beautiful children—Jason, Chris, Brad, and Marissa. My mother always commented that our children were good “therapy” for me because my days were filled with teaching them to talk and conversing with them. They learned to take their pacifiers out of their mouths so that I could read their lips. Our children learned to be my “ears” for me at a very young age. They were trained how to talk on the phone and had to learn telephone etiquette to relay messages for me. They learned some valuable coping skills since I did not always hear everything that was going on. (Left, Christmas 2011: (back) Steve, son Jason and grandson Jackson, sons Brad and Chris, daughter Marissa’s boyfriend Howy Moulton; (front) Laurie, daughter-in-laws Jessica and Caitlyn (holding Madelyn), daughter Marissa Pullins holding Wyatt Moulton. Photo © Sabrina Lafon Photography)

They are our greatest accomplishments and successful young adults who are sensitive to others who are “differently-abled.” Many other highlights of our marriage included moving nine times in twelve years with the Navy and living in six different states, career changes and raising our four children.

PAYING IT FORWARD
I believe we were fashioned for fellowship and formed for friendships. My definition of friendship can often be defined more lasting than a marriage and closer than a brother or sister. The most unlikely people can end up as friends and I feel that often has to do with where we are in life.

I’ve had some wonderful friendships over the years but since I came to terms with my hearing loss and started my cochlear implant journey, some of my closest friends are also on a hearing journey as well.

I joined HLAA in 2005 when I started losing what little bit of hearing I had and soon discovered that HLAA was a lifeline for others like I am who are affected by hearing loss. I would not be where I am in my life if it wasn’t for their encouragement, advocacy, information, and support. Not everyone has that type of support and that is where HLAA comes in at the national and local level. I have used the Internet as an opportunity to connect, meet and even mentor to others, including parents of deaf children. I am passionate about HLAA and it is no accident that I am in a position to “pay it forward” and help others with the challenges that they face every day. (Above: HLA of Knoxville Christmas party; Laurie is in the front row, far right.)

Someone asked me once that if I could name the one person who has made a difference in my life, who would it be and why. Although I’ve been blessed with many friends and supportive people, it would be my mother. She was a great advocate for me and my younger brother, Doug, and did everything in her power to help us be the successful people we are today. Because of her love and dedication, I can “pay it forward” and advocate for others with hearing loss. Mom is still very much a part of my life today.

WHY I DANCE
When I started my cochlear implant journey in 2005, I created a blog and named it “Laurie’s Dance with Sound.” Little did I know that I would embrace the world of dance in a brand new way six years later.

In January of 2011, Steve and I walked into the Let’s Dance Ballroom Dance Studio in our small town of Maryville, Tennessee, to explore ballroom dancing. We found a new passion that we could enjoy together as a couple in our new lives as empty nesters. Steve and I have been dancing the “dance of life,” so to speak, for the last 36 years and were looking forward to dancing together in a new and different way. After a few weeks of lessons, something stirred inside of me and I knew then that I needed more than just a few sessions a week. In addition to dancing with my husband, I started private lessons with our dance instructor to explore the world of ballroom dancing on a new and different level.

During one of my private dance lessons, Chris Rose, my dance instructor, asked me the question, “Why do you want to dance?” The question caught me off guard. I have pondered it ever since, searching for some better answers. As long as I can remember, music has always been a part of my life. Even though I could not hear well, it filled my heart with emotion and needed no words.

Victor Hugo describes it perfectly when he says, “Music expresses that which cannot be put into words and cannot remain silent.” When I wore my hearing aids, music was just “pretty noise.” I would play it as loud as I could so I could feel the beat and rhythm through the vibrations and sounds. Throughout the years, I have expressed music through many different forms, whether it was by playing the piano, ringing hand bells in church, dancing liturgically, signing to music, and even swimming on a synchronized swim team.

In August 2005, I underwent surgery for my first cochlear implant, and surgery for another cochlear implant followed in January 2007. These two surgeries changed my hearing and life dramatically. For the first time in my life, I was hearing sounds that I had never heard before, sounds others take for granted. I spent a year in auditory-verbal therapy relearning how to hear with my new “ears.” Now that I can hear almost perfectly with my cochlear implants—the sounds of music changed for me and became multi-dimensional with the variations of the different instruments and voices.

When I dance, I can leave the stressors of daily life outside the dance room door. I lose myself in the music and the dance. I cannot go more than a few days without music. And now I cannot go more than a few days without dance. I cannot find all the words to explain how I feel, but I do know that ballroom dancing has changed something deep inside me, and it is something that cannot be hidden or controlled.

When I dance, I feel a shift in my spirit and lose myself in the rhythm of the music on the dance floor. When I wear my dance “hat,” I only know that I am listening and responding to the music playing in my ear, and it makes me feel whole. Learning to ballroom dance has ignited a fervent passion and desire that I cannot deny. For when I dance, it is just the music and me.

Dancing lets me live a dream that I have always had. Ballroom dancing has allowed me to let my hair down and be free. It helps me release the tension and stress I encounter in my daily dance of life, keeping my body and brain active, and helping me with my mental health. I have Meniere’s disease, which is a disorder of the inner ear that affects hearing and balance, characterized by episodes of vertigo, dizziness, and occasional “drop attacks.” I am learning how to balance and control my body and have had fewer episodes since I started dancing! I am gaining more confidence and coordination in my body, which is resulting in a better posture and a more positive outlook on life.

My dance instructor and his colleagues at the dance studio know that they have given me a new lease on life. Their faith, belief and trust in me that I can dance in spite of my challenges speak volumes. Chris is so patient with me, yet firm with constructive criticism. Since I’ve started dancing, I’ve performed four different routines with my husband, Steve, or with Chris and have entered and placed in several local ballroom dance competitions. I am nervous right up to the time of each performance but as soon as the music starts, the butterflies in my stomach go away and I just dance.

What a wonderful feeling it is to show my joy, my emotions, and deep gratitude that I am able to do what I love as I move across the floor with my dance partner. I would not have done this without the miracle of sound through my cochlear implants, and especially without the support of my parents, family and friends.

My mother always encouraged me to use the gifts that I was given and NEVER gave up on me. She said in 1974, “From our standpoint it is worth it all. I feel that even with all the modern help now available, too many parents set their sights too low and give up too easily. As a result, many deaf children are not realizing their full potential.”

A CHANGED LIFE
It doesn’t take much for the tears to well up in my eyes and start flowing down my cheeks when I hear the joyous sounds of the birds, the wind in the trees, music, voices of my family, especially my grandchildren, to be able to hear and understand people around me without having to read lips, to be able to use the phone, and everything else with two “ears.”

I am a changed life. Changed because of the technology that allows me to dream again, to go back to college, speak, dance, mentor, and hear the world all around me. So many of us are afraid of the unknown and are afraid to leave our comfort zone to try new things. And we run away from it when the very thing we should do is to embrace the challenges before us. And when we do accept the gifts and talents that we are blessed with, we will come out on the other side, surprised and better than we were before.

So, my friends, dance the dance of life that you are given. You will never ever be the same again.

Laurie Pullins has been the president of the HLA Knoxville Chapter for five years. The Chapter recently participated in the Chattanooga Walk4Hearing and was the highest fundraising team. She can be reached at ldpullins@gmail.com. Her blog is http://lauriescidance.blogspot.com.





Seen & Heard: Laurie D. Pullins

17 07 2012

Laurie D. Pullins, a member of the Hearing Loss Association of America (HLAA), made her Seen & Heard profile debut in the July/August 2012 issue of Hearing Loss Magazine, which just arrived in member mailboxes. Laurie is also the cover feature author for this issue. She had already signed up for the Seen & Heard column before we approached her to write her feature, and her answers were so interesting that we included her Seen & Heard profile as well! Seen & Heard is a new column I developed for the magazine in 2011 and we had 48 members get enthusiastically involved in our first outreach effort! During Convention 2012 in Providence last month, I photographed 21 new profile subjects. We’ll be publishing one or two profiles (as space allows) in each issue of the bimonthly magazine.

Join the Hearing Loss Association of America!
Do you have a hearing loss or know someone who does? Consider membership in the Hearing Loss Association of America. Student annual dues are $20, individual annual dues are $35, and family/couple annual dues are $45. Fees outside the U.S. are slightly higher. All memberships include discounts on hearing-related products, convention and special event early bird discounts, AVIS and Alamo car rental, and the award-winning Hearing Loss Magazine. Sign up for membership here.

LAURIE D. PULLINS    Maryville, TN / born April 1, 1957 in Columbus, OH

MY HEARING LOSS… My hearing loss was discovered at the age of two. There was no real explanation for it or a family history of hearing loss. I wore hearing aids for 40+ years and received my first cochlear implant in August of 2005 and my second in January 2007.

SAGE ADVICE… There is no better time than today to be deaf or hard of hearing. It is not the end of the world and there are so many options and services available today compared to 10, 20, or 30 years ago. Technology is improving by leaps and bounds, making it possible to hear in different ways through hearing aids and cochlear implants. Most importantly, surround yourself with a strong support system. Advocate for yourself or your family member who has the hearing loss.

FUNNY HEARING LOSS MOMENTS… #1: Shortly after my hearing loss was discovered, I started therapy in Buffalo’s Children’s Hospital first and then transferred to Ohio State University’s program after my parents were relocated. The room where I had therapy was in a highrise building (don’t remember how many floors up). While my mother and therapist were discussing my latest therapy session, I climbed out the window and sat on the ledge, looking at the activity and passersby below me. Needless to say, I caused some anxiety for my mother and therapist and it was a challenge for them to get me back in the room off that ledge! #2: Forgetting to tell my husband that I set my Sonic Boom Alarm clock for the first time. I had to pry him off the ceiling the next morning! #3: I attended my first HLAA Convention in Oklahoma City with Jennifer Thorpe and we were roommates. Neither one of us had shared a room with a deaf person before. The first morning, I woke up before she did so I made sure I was quiet as I got dressed, tiptoeing around the room, not making a sound. She did the same for me when she got up before me. A day or two later we both realized, “Duh! Neither one of us can hear with our “ears” off as we sleep!” We could make all the noise we wanted and not wake each other up. We have laughed about that so many times.

WHEN I WAS LITTLE I WANTED TO BE A… dental hygienist. Today my passion is to “pay it forward” and help others with hearing loss.

FAVORITE CHILDHOOD MEMORY… I remember swinging in a handmade swing in a big maple tree on my grandparents’ farm. I would swing for hours as high as I could over the garden and sing a song that was actually a poem “How do you like to go up in a swing, up in the air so blue…” I loved spending time with both sets of my grandparents on their farms.

THE BEST GIFT I EVER GOT… was the gift of time from my best friend, Dawn. When I got the call that my mother had slipped into a coma after a short battle with pancreatic cancer, Dawn helped me pack my suitcase and said, “Just go be with your mother. I will take care of your family for you.” She took care of our four children plus her own three (all the kids were between the ages of 2–11) for eight days so I could spend my mother’s last days with her. I love to be with people and the gift of time is always special to me.

THE FIRST THING I BOUGHT WITH MY OWN MONEY WAS… contact lenses. I wore glasses starting in third grade and wanted contact lenses so bad. My parents told me that if I saved $100, they would pay the rest. So, I saved my babysitting money and got my contacts at the age of 15.

THE HARDEST THING I’VE EVER DONE WAS… returning to college while working and raising a family of four children.

I LOVE THE SOUND OF… music, the little voice of my grandson, the wind softly blowing through the trees, the sounds of the birds—just to name a few.

IN MY SPARE TIME I… love to write and read. I also love quilting, sewing, gardening, ballroom dancing, reading and knitting.

I MOST DEFINITELY AM NOT… bored.

I MISS… my mother.

HAPPINESS IS… being loved and accepted.

MUSICALLY INCLINED… piano, hand bells, recorder

DO YOU SPEAK ANY LANGUAGES OTHER THAN ENGLISH? Yes, a little bit of Latvian (just the basics). I’ve gone to Latvia several times on mission trips.

WHO HAS HAD THE MOST INFLUENCE IN YOUR LIFE? My mother was my best friend, prayer partner and confidant, and understood me better than anyone else.

PEOPLE WOULD BE SURPRISED THAT I… used to go deer hunting.

MY LITTLE KNOWN TALENT IS… synchronized swimming.

FAVORITE PLACE TO BE… Every year I escape to my aunt’s house in Mt. Gilead, Ohio, for a week-long sabbatical away from my obligations and family. We talk, eat, sleep and quilt to our heart’s content. “Gilead” means “healing waters” and this place is a “healing place” for me.

I HAVE A WEAKNESS FOR… crème brûlée, my favorite dessert.

I WOULD LOVE TO MEET… Heather Whitestone McCallum.

I COLLECT… anything related to the Drummer Boy.

PLACES I’VE CALLED HOME… Ohio, Florida, Idaho, Connecticut, Wisconsin, and Tennessee

WORKING NINE TO FIVE… dental assistant, department store manager, bank teller, information technology assistant, accountant

FAVORITE TUNES… Amazing Grace, Annie’s Song by John Denver, Colour My World (Chicago), Stairway to Heaven (Led Zeppelin), Bridge Over Troubled Water (Simon & Garfunkel), Christian music, Loving You Forever (Carole King)

ON MY BOOKSHELF… The Bible, Heaven is for Real, Ken Follett books, The Girl with the Dragon Tattoo series, James Patterson books

ON THE BIG SCREEN… I love any movie with Denzel Washington or Morgan Freeman (Book of Eli, Hurricane, etc.), The Sound of Music, Shall We Dance, The Ten Commandments, The Chronicles of Narnia series and Harry Potter movies.

THE LAST BOOK I READ WAS… Ken Follett’s World Without End and The Hunger Games.

I AM… loving, encouraging and industrious.

MY MOTHER TAUGHT ME… to hear and to communicate, that I could do anything that I put my mind to, and she encouraged me to try new things.

MY FATHER TAUGHT ME… how to play Scrabble and card games.

GET ANYTHING GOOD IN THE MAIL LATELY? My aunt sent me some old letters that my mother had written years ago.

WHAT’S THE BEST THING SINCE SLICED BREAD? The World Wide Web and technology (cell phones, Bluetooth, etc.) enables the deaf and hard of hearing to be “connected” to the outside world.

I HAVE A FEAR OF… bridges.

I REALLY SHOULD STOP… procrastinating.

I REALLY SHOULD START… spending more time with my grandchildren.

WORD OR PHRASE I OVERUSE… “Bless Your Heart” (it’s a southern thing!)

I HAVE THE UNCANNY ABILITY TO… misplace everything.

I SIMPLY CANNOT LIVE WITHOUT… my cochlear implants or my glasses!

SONG YOU LOVE BUT ARE EMBARRASSED TO ADMIT TO… “Popcorn”—I used to listen to this all the time back in the
70s. It really sounds like popcorn popping!

NAME SOMETHING YOU HAVE IN YOUR HOME THAT YOU ARE SURE MOST PEOPLE DON’T… Latgale pottery from Latvia (bowl and plates)—they are my favorite pieces

MY THREE FAVORITE POSSESSIONS… are my cell phone, computer, and my favorite chair.

MY LATEST OBSESSION… is ballroom dancing.

MY FAVORITE QUOTE… “As long as I live I’ll always hear birds, waterfalls, and winds sing.” —John Muir

MY MOTTO IS… “God gave us two ears and one mouth for a reason.” In other words, we should listen more than we talk!

MY LONG-TERM GOAL… is to retire and build an energy efficient “green home” in the Smoky Mountains.

MY SHORT-TERM GOAL… is to take photography classes at our local community college.

I LOVE… my husband, Steve Pullins. He has a great sense of humor and is a calming influence on me and others around him. He is my best friend and dance partner for life!

MY GREATEST ACCOMPLISHMENT IS… our four children.

I WANT TO BE REMEMBERED… as a kind, loving, and giving Christian woman making a small difference in someone’s life.

Photo © Cindy Dyer. All rights reserved.





No Compromise: Richard Einhorn, Composer

14 05 2012

Richard Einhorn, award-winning composer, wrote the cover feature for the May/June 2012 issue of Hearing Loss Magazine, which I design and produce bimonthly for the Hearing Loss Association of America. In his article, Einhorn writes about his sudden hearing loss and how, with his clever uses of existing technology, he continues to work and live well with hearing loss. For the full article, click on this link: Richard Einhorn

Learn more about Richard Einhorn on his website here and the fascinating details about how Voices of Light came to fruition here. To learn more about Joan of Arc, view his program notes here.

I found it especially moving that Einhorn recorded the church bells ringing in Joan’s birthplace and included them in the production. In his program notes, he writes: Just prior to writing Voices of Light, I traveled to France to visit some of the important Joan of Arc historical sites. I went to Orleans where she won her first battle and also to Rouen, where I was deeply moved by the ruins of the castles where Joan was held and the cross erected at the site of her martyrdom. I also traveled to the little village of Domremy, Joan’s birthplace in the southeast, where her house and church, much restored, still stand. I took along a portable DAT recorder and recorded the sound of the Domremy church bell and later incorporated it into my score. I felt that Joan, who so loved church bells, whose voices seemed to speak to her whenever they were ringing, would appreciate the effort.

Excerpted from his website: 

Einhorn has written opera, orchestral and chamber music, song cycles, film music, and dance scores. Among his many projects is the wildly popular Red Angels for New York City Ballet, set to Einhorn’s music with choreography by Ulysses Dove, which had its television premiere on Live From Lincoln Center (PBS) in May of 2002. His film credits include the Academy Award-winning documentary short, Educating Peter (HBO) and Arthur Penn’s thriller Dead of Winter (MGM), starring Mary Steenbugen; and Fire-Eater directed by Pirjo Honkasalo, for which Einhorn won the Jussi (Finnish Academy Award) for Best Musical Score.

Born in 1952, Richard Einhorn graduated summa cum laude in music from Columbia University. Before turning his attention exclusively to composition, Einhorn worked as a record producer for such artists as Meredith Monk and The New York Philharmonic. His production of the Bach Cello Suites with Yo-Yo Ma won a Grammy for Best Instrumental Performance.

Recent works include The Spires, The City, The Field, a 9/11 memorial premiered by the Albany Symphony. A Carnival of Miracles, a piece written for Anonymous 4, premiered to a sold-out crowd at New Sounds Live and broadcasted live over WNYC-FM. My Many Colored Days is an orchestral commission from the Minnesota Orchestra. He lives in New York City with his wife Amy Singer and their daughter Miranda.

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I had the honor and pleasure of photographing Richard for Hearing Loss Magazine (HLM) in March. Barbara Kelley (HLM’s editor-in-chief) and I met up with him at the Peabody Conservatory in Baltimore. After a great photo session, we dropped Richard off at his hotel and picked him up later to take him to the Meyerhoff, where his work, Voices of Light, was being performed by the Baltimore Symphony Orchestra, with Marin Alsop conducting. Einhorn composed the piece in 1994, inspired by the 1928 silent film, The Passion of Joan of Arc, directed by Carl Theodor Dreyer. Live performances accompany a screening of the film. The libretto is based on excerpts from a variety of ancient writings, most of it from Medieval female mystics, and scored for a small orchestra, chorus and soloists. For me, the performance was a haunting, incredibly moving and very profound visual and aural experience. To get a feel for the combination of this powerful film and Einhorn’s remarkable composition, view the 10-minute video segment below. The film is captioned in both French and English.

Barbara interviewed Richard for a companion piece to his article. This interview is included in its entirety below.


BEHIND THE SCENES: Composer Richard Einhorn and Voices of Light

by Barbara Kelley

Richard Einhorn’s acclaimed Voices of Light has been called “a great masterpiece of contemporary music” and “a work of meticulous genius.” Voices of Light is an oratorio set to Carl Theodor Dreyer’s 1928 silent film The Passion of Joan of Arc. Voices of Light has been performed more than 200 times by major orchestras all over the world, including two recent performances with Baltimore Symphony Orchestra, Marin Alsop conducting.

Einhorn, who has composed many film scores and concert works, had been interested in writing a large work on a religious subject. In 1988, he finally discovered what he would do. As he wrote in the liner notes for the Sony Classical recording of Voices of Light, “Imagine walking down an ordinary street in an ordinary city on an ordinary day. You turn the corner and suddenly without warning, you find yourself staring at the Taj Mahal. It was with that same sense of utter amazement and wonder that I watched Carl Theodor Dreyer’s The Passion of Joan of Arc for the first time.

“That was back in January 1988. I was idly poking around the film archives of New York’s Museum of Modern Art, looking at short avant-garde films, when I happened across a still from Joan in the silent film catalog. …some 81 minutes later, I walked out of the screening room shattered, having unexpectedly seen one of the most extraordinary works of art that I know.”

The film is lauded as one of the top ten films of all time. Richard’s original score took six years to put together. He says about Voices, “[It] explores the patchwork of emotions and thoughts that get stitched together into the notion of a female hero.”

Marin Alsop, music director of the Baltimore Symphony Orchestra, said, “I don’t think anyone will be able to leave this performance unaffected.” Right: Richard Einhorn rehearses with soloists at the Peabody Conservatory of Music in Baltimore; from left: Stephen Campbell, Phoenix, AZ; Rachel Grider, Modesto, CA; and Nola Richardson, Sydney, Australia

Another oratorio by Einhorn, The Origin, recently received audience and critical acclaim for its European premiere in Bremen, Germany. Richard also devotes his time to advocacy for people with hearing loss and has been featured in The New York Times and elsewhere. Read The New York Times article about Richard, “A Hearing Aid That Cuts Out All the Clatter,” by John Tierney at http://bit.ly/EinhornNYTimes

A Hearing Loop Installed for Voices of Light Performance
On March 2 this year, Einhorn’s Voices of Light was performed at the Joseph Meyerhoff Symphony Hall by the Baltimore Symphony Orchestra. This was a special event because Richard was able to hear his own composition. Thanks to Ampetronic and their U.S. distributor, Fred Palm of AssistiveAudio, Inc., as well as the Meyerhoff, a hearing loop was installed in the concert hall for the weekend performances.

Audience members with hearing loss using cochlear implants or telecoil-equipped hearing aids were able to enjoy the performance by accessing sound transmitted electromagnetically by a hearing loop—a wire that circles the room and is connected to the sound system.

After the performance, Barbara Kelley, editor-in-chief of Hearing Loss Magazine, interviewed Richard to learn more about his career.

You were 15 when you began composing. Did you play a musical instrument? I first learned to compose entirely on my own, by experimenting with tape recorders and improvising. I played drums in a rock band when I was a kid, but quickly became interested in writing my own music. I was involved with an avant-garde multimedia ensemble in high school and, as an experiment, wrote a piece for some friends of mine who were modern dancers. The moment I saw my friends dance to my music I knew there was nothing else I wanted to do with my life except compose.

Above: Barbara Kelley, Richard Einhorn and Brenda Battat (Executive Director of Hearing Loss Association of America) after the performance of Voices of Light at the Meyerhoff 

After a year or so, I realized I needed to study formally and I went to Columbia University where I majored in music, studying ultimately with electronic music pioneer Vladimir Ussachevsky and opera composer Jack Beeson. I graduated in 1975 summa cum laude, Phi Beta Kappa, then worked as a record producer for Columbia Masterworks for five years, before pursuing composition full time.

Do you come from a musical family? Nobody in my immediate family is musical. However, my great-aunt Hattie was a concert pianist in the early 20th century. My grandfather was an inventor and worked in East Orange, New Jersey when Thomas Edison was in West Orange. Somewhere in the family, there is correspondence between them! Probably, I got my interest in technology from my grandfather and my musicality from my great-great grandparents.

How did you know you had this aptitude at a young age? I don’t know if I have any aptitude. I have a lot of interest in composing music and I have a lot of ideas. I am also extremely persistent and won’t let go. I work very hard at composing but it’s enjoyable work and I love it. I am thrilled that other people often seem to enjoy it as much as I enjoy composing it.

What inspires you? Sound inspires me the most of all. I live for sound and my primary experience of the world, especially the world of emotions, is through sound, not sight or another sense. I am also inspired by great stories, such as Joan of Arc’s and Charles Darwin’s. I find them both amazing human beings in many different ways.

What projects are you working on now? I have a new piece for Brooklyn Academy of Music’s Next Wave Festival, a collaboration with the great filmmaker Bill Morrison. It will be an interactive piece called Shooting Gallery, with laser beams, six projectors and an hour of interactive music. I haven’t done anything like it since high school and I’m very excited!

I’m also writing a new piece for dance for two great musicians I’ve worked with quite a bit, violinist Mary Rowell and pianist Judith Gordon. The work will premiere in fall 2013. Further off is a large piece for orchestra and film, again with Bill Morrison. All I can say at the moment about it is that Bill, the conductor, the orchestra, and I are extremely excited about it.

Are there any projects you would like to work on? What is your dream project? I am a dramatic and lyrical composer. I’ve lived many of my dreams. I always wanted to work with Bill Morrison, and already have on the Darwin piece, The Origin. I have always wanted to work on an opera, and it looks like I will. I’ve composed scores for some truly wonderful movies and I’ve worked with some of my favorite musicians—and some of my favorite people.

I feel very lucky to have been able to do so and doubly lucky that my family has fully understood that this is an unusual life, but in many ways a rewarding one for all of us. I want to continue to compose the best music I can for the best musicians I can, for the most exciting projects I can find, and collaborate with artists from other disciplines whom I admire. I’ve met some amazing people along the way, and that has made the hard work and long hours it takes to compose all the more worthwhile!

Special thanks to the Peabody Institute of the Johns Hopkins University in Baltimore for permitting us to take photographs of Richard Einhorn in the Peabody Conservatory of Music.

All photos © Cindy Dyer. All rights reserved.