Hearing Loss Magazine, January/February 2015 issue

8 01 2015

Janet and Sam Trychin (and their hearing dog, Doris Eileen) grace the cover of the first 2015 issue of Hearing Loss Magazine, which is published bimonthly by the Hearing Loss Association of America (HLAA). I photographed them at Convention 2011 in Washington, D.C.

© Cindy Dyer. All rights reserved.

JanFeb 2015 cover





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. 





Music to My Ears: Nancy Williams

27 08 2014

In the September/October 2014 issue of Hearing Loss Magazine (published bimonthly by the Hearing Loss Association of America—HLAA), Barbara Chertok interviews pianist/author/publisher Nancy Williams. I photographed Nancy at HLAA’s Convention 2014 in June in Austin, TX.

Photos © Cindy Dyer. All rights reserved.

NancyWilliamsCoverMusic to My Ears by Barbara Chertok



HLAA Member Barbara Chertok interviewed Nancy Williams, an HLAA member who despite a hearing loss, is an accomplished pianist and much more. Discover what inspired Nancy to reclaim her passions.

What caused your hearing loss and when did it begin?
Although I wasn’t diagnosed by an audiologist until age six, my parents suspect that I was essentially born with a hearing loss. My loss is genetic, as a result of a mutation in the Connexin 26 gene. For much of my childhood, my hearing loss was confined to the high frequencies, and my hearing in the low-to-mid frequencies was normal. In seventh grade, I was fitted with my first hearing aid, a behind-the-ear model, bulky by today’s standards.

In an article you wrote, you revealed you not only denied your hearing loss to others but even to yourself. Now, you tell people about your hearing loss. What brought on the change?
I have to credit reclaiming the piano for helping me to be open about my hearing loss. Returning to the piano shortly after my 40th birthday spurred my desire to write about the intimate relationship between music and hearing, sound and silence. I wrote an article for my online magazine, Grand Piano Passion, about how wearing hearing aids figured into my piano recital.

After reading that piece, a friend asked me to attend, as a member of the press, a reception by the Hearing Health Foundation (HHF), a New York-based nonprofit funding research for a cure for hearing loss. At the reception, I was elated by the prospect of a cure. For the first time in my life, I was in the company of a large group of people with hearing loss.

Shortly thereafter, I joined the HLAA Board. Becoming an active member of the hearing loss community solidified my commitment to write openly about my hearing loss, yet the catalyst was my love for playing the piano.

If people question how you can perform on the piano or interpret what the composer has written when you have a significant hearing loss, how do you respond?
I am fortunate in that no one has directly questioned my ability to play, although occasionally I have worried that people might be voicing those objections to themselves. I think the best way for me to respond to the potential objections is to simply play, demonstrating to people my love of the piano.

The Association of Adult Musicians with Hearing Loss, founded by Wendy Cheng, a violist with cochlear implants in both ears, has a similar strategy. Their recent CD, Hear This!, is an inspiring example of musicians with hearing loss putting forth their music.

You claim to have a ‘listening profit’ when it comes to your piano playing. Would you explain that for us?
I coined the term ‘listening profit’ as a counterpoint to the much more familiar term ‘hearing loss.’ The act of listening is quite different from the act of hearing. Lindsey Dryden, a gifted filmmaker who is deaf in one ear and created the movie Lost and Sound, remarked in a Grand Piano Passion interview that she often wondered whether she was good on the piano as a child precisely because she was partially deaf. I believe that people with hearing loss listen more keenly and more consciously than musicians without hearing loss. I have found that striving to overcome the disability of not hearing is part of what aids my musicality.

Do you have tinnitus [ringing in the ears] and does it interfere with your piano playing?
My tinnitus is very mild. I am not sure whether that is because I have worn hearing aids for most of my life and using amplification can help mitigate the symptoms of tinnitus (the Hearing Heath Foundation, where I serve on the board, has a great treatment of this topic), or whether I have just been lucky. Occasionally I hear a rapping sound in my left ear, but my mild tinnitus does not interfere with my playing.

You have written about the stigma against hearing loss being real. What do you feel it will take to eradicate this stigma?
I think the most important ingredient in eradicating the stigma against hearing loss is for people who are functional in society but nonetheless suffer from hearing loss to be more candid about their condition. That is easier said than done, because our society stereotypes people with hearing loss as slow, out of touch, thickheaded, and unlikely to accomplish much.

I know people who work in worlds ranging from music to finance who are unwilling to be candid about their hearing loss for this exact reason. So it’s up to each person to decide how much candor they can risk. Every time someone with hearing loss unveils their condition and asks for what they need, we as a community take another step toward loosening the stigma. I believe we will be greatly helped by our current generation of children, who sport cochlear implant bling and other hearing aid fashions.

Do you feel a special kinship with Beethoven because of your mutual hearing loss? Do you hear the music within as he did?
I hesitate to answer this question in which Beethoven and I appear in the same sentence. However, he is one of my favorite composers, and the second movement of his Fifth Piano Concerto is about as close to heaven as I am able to get. I have always felt a tremendous empathy for the anguish he must have experienced as he lost both his hearing and the society of those close to him.

It fascinates me that we can in a sense hear music in our brain, and that is in essence how Beethoven managed to compose while he was deaf. I am able to hear within my mind the piano music that I study closely. In the years since my hearing loss was first diagnosed, my audiogram has been slowly worsening, such that my hearing loss is now moderate in both ears, sloping to severe in the high frequencies. I’ve tried to consciously develop the skill of hearing within, with the thought that if someday I am unable to hear at all, I still will be able to hear my music.

You founded Grand Piano Passion, an online magazine. What is its mission and purpose?
Grand Piano Passion celebrates all who make music despite a hearing loss, no matter their instrument, level, or age. We profile both amateur and professional musicians who have a hearing loss, and we also cover the best books and articles in this field. One of my favorite series is Hearing Health Affirmations, articles that showcase the positive affirmations of musicians with hearing loss. Also not to be missed is a series called Practice Listening by Jay Alan Zimmerman, a deaf composer who has been called ‘Broadway’s Beethoven.’

Do you use any assistive listening devices when you listen to music?
I purchased the Phonak ComPilot, which I use while using my iPhone—the ComPilot pipes sound directly from my iPhone into my hearing aid—as well as for listening to classical piano music on my computer. Listening to music is a big part of my job as the founding editor of Grand Piano Passion, so the ComPilot has been very useful for me when I review albums for my online magazine.

You refer to yourself as an ‘amateur’ pianist, yet you have performed at Carnegie Hall. Why is that?
In 2012, I took a master class on performance and our final recital was held at Carnegie Hall. Short of my wedding day and the birth of my two children, this was the best day of my life. I got a wonderful taste of the life of a concert pianist.

Although I am not a concert pianist in the strict sense of the term, performing [on] the piano is increasingly occupying a larger part of my professional life. I speak on finding your passion, and often my speaking engagements include performing a select repertoire on the piano. By sharing my music, I am able to demonstrate both via sound and emotion just how powerful a passion can be. I presented my workshop “Finding Your Calling… Despite a Hearing Loss” at the HLAA Convention 2014 in Austin this summer.

Do you ever choose to learn a piece of music because it falls within the range of the hearing you have in the lower frequencies and not in the higher frequencies where your hearing loss is more significant?
The frequency range of a piece of classical piano music is most definitely a consideration for me. For example, the wonderful fioritura, or series of grace notes, which concludes Chopin’s Nocturne in E-Flat Major begins on the second highest C on the piano keyboard, a region where even with my hearing aids I hear mostly the little plunk of the key hitting the key bed. I play these notes mostly by touch. When I studied Debussy’s Clair de Lune, a shimmering meditation on nighttime that is beloved by many pianists, I chose not to perfect the music, one reason being the concentration of notes in the upper end of the keyboard.

You returned to the piano after a 25-year hiatus. How much of your former repertoire were you able to retain?
When I first returned to the piano, the only note I could remember was middle C, that note on its own line, between the two staffs. I had to count all other notes from middle C. I had forgotten the notes, along with all the repertoire I had studied and performed as a teenager, as a defensive mechanism of sorts against reclaiming the piano. I think many adults carry a passion deep within, and excavating it can take a lot of commitment. I’m happy to say that now I have relearned Debussy’s Reverie, a piece I first performed in recital when I was 13, and now is one of my favorite pieces in my repertoire.

When you play the piano, whether for your teacher or in a concert, does it worry you that you might miss hearing a wrong note because of your hearing loss?
This is an interesting question because it gets at the distinction between hearing and listening. As a pianist, even if I physically hear myself play a wrong note, unless I am listening attentively to the music, the wrong note could escape my notice. So I think the bigger challenge is to truly listen to the music, both its melody and accompanying harmony.

What would you tell a budding pianist with hearing loss embarking on a career in music?
There are inspiring examples of pianists with hearing loss, such as Kori Linae Carothers, Jennifer Castellano, and Ricker Choi (whom we have featured in Grand Piano Passion).

For people with hearing loss who have a passion for the piano, or any instrument for that matter, I wholeheartedly encourage them to pursue their callings. Passions help all of us to develop the whole person. Many adults find that when they activate long dormant callings, they realign other parts of their life, strengthening their professions, forming new friendships, and even growing closer to their families and the people they love most deeply.

Barbara Liss Chertok lost her hearing suddenly in 1957 at age 21 from what was diagnosed 35 years later as Cogan’s syndrome, an autoimmune disorder. She hears with bilateral cochlear implants. She joined SHHH/HLAA in 1979 and is an active member of the HLAA Sarasota Chapter. A former lipreading/speechreading teacher, she is a freelance writer/interviewer for Hearing Loss Magazine. She serves on the National Advisory Board of the American Hearing Research Foundation. Barbara can be reached at barbchert@gmail.com.

Nancy Williams on the Web
www.grandpianopassion.com
http://www.Facebook.com/NancyWilliamsPiano
http://www.Twitter.com/NWilliamsPiano
www.youtube.com/nancywilliamspiano

Relevant Links
Association of Adult Musicians with Hearing Loss: aamhl.org

Hearing Health Foundation: hearinghealthfoundation.org

Interview with Amateur Pianist Ricker Choi
http://bit.ly/GrandPianoPassion-Choi

Hearing Aids at My Piano Recital by Nancy Williams
http://bit.ly/PianoRecital-Williams

A Different Way of Listening—Lindsey Dryden on Hearing Loss, Her Music and Her Documentary
http://bit.ly/LindseyDryden-HearingLoss

 





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.

 





Timothy Chambers: Living a Creative Life with Usher Syndrome

29 06 2014

Artist Timothy Chambers is our cover feature for the July/August 2014 issue of Hearing Loss Magazine, which I design bimonthly for the Hearing Loss Association of America. I interviewed and photographed Timothy for this feature.

Timothy cover

 

Living a Creative Life with Usher Syndrome 

It was a breezy Sunday in May when I drove out to bucolic Berryville, Virginia, to meet Timothy Chambers and watch him paint a plein aire landscape. Tim has Usher syndrome, a condition characterized by hearing loss and progressive vision loss, but it certainly hasn’t stopped him from pursuing his passion for painting. He is funny, a great storyteller, a gifted artist and amazingly optimistic.

What is your earliest memory of hearing loss and vision loss?
In kindergarten, my teacher noticed that when she was facing me, I understood her. However, when she turned away from me toward the chalkboard, I did not. She brought this to my parents’ attention, and we visited an audiologist who confirmed that I had hearing loss, and fitted me with a set of hearing aids.

I then had speech therapy in first and second grade with Mrs. Mary Beard, who was amazing, as I have always been told that I speak much better than I hear. Although I began wearing glasses and contact lenses in middle school, it wasn’t until I was 30 years old before any doctor suggested that I had retinal issues.

Timothy Feature Page 1What was your first reaction to the diagnosis of Usher syndrome?
At the age of 30 and on the heels of coming in second place in an international portrait competition, I went for my annual routine eye checkup. It started fine, but routine quickly turned to horror when the doctor’s face went from relaxed to concerned. “Something’s not right. You need to see a retinal specialist.” The feeling was dread, it was silence, it was fear, it was unfamiliar, it couldn’t be. Please, no…

My wife (and best friend) Kim and I were referred to a retinal specialist in Washington, D.C. My worst fears were confirmed. I had Usher syndrome, a degenerative disease in which one steadily loses their hearing and vision. Unfortunately, my specialist lacked any sense of bedside manners. In an effort to provide him some background about me as we considered a plan of action, I brought a portfolio of my portrait paintings for him to view. He flipped through a few pages then thrust it back into my hands, and with the warmth of a surgical knife, said, “Find another profession.” Ugh. That hurt. To this day, I cringe when that tape plays in my mind.

Tim and wifeHave you availed yourself of any hearing or visual assistive technologies to help you live and work successfully with your dual loss?
I can get by fairly well with hearing aids and quite a bit of lip reading. Hearing over the phone, or without being able to see someone’s face, or being in a loud environment is really challenging. However I’m surrounded by people who don’t mind repeating things.

I have a good friend, Mike, who’s been incredibly thoughtful. Mike has provided me with updated computers and large monitors. But other than that, I haven’t made use of any visual aids… yet. Though I do enjoy a good pair of sunglasses with amber tint which works best to reduce glare and increase contrast.

My greatest asset is my wife Kim. She’s thoughtful in looking out for me. She makes sure that cabinets are closed, and teaches the kids to move their toys and shoes out of the way. Outdoors, she always alerts me of steps, curbs, anything I could trip over. She makes my life so much easier. Besides, it’s nice to have a beautiful woman by my side. Even my dog knows to get out of the way when she hears me coming.

What is the psychological impact of living with Usher syndrome?
It took me a couple of years to learn to deal with the news of the disease and the dual sensory loss. My worst fear was that I would lose my sight and hearing completely, and be relegated to a rocking chair, waiting for someone to come touch me and say hello. I feared that my life would become nothing, that I would have nothing to offer. I feared that I would be forgotten, dismissed, losing all dignity, a mere inconvenience in the lives of those who could still live fully. It was a deep fear, and it would take time for me to release it and trust that God truly does have plans for a future for me.

The original diagnosis and advice (“find another profession”) played mercilessly in my head, paralyzing me at times. In fact, I didn’t get a full night’s sleep for almost two years due to waking up in fear of what lay ahead.

Finally, it was our family physician who helped me get over the fears. He said, “Tim, this is an issue of faith and trust. You’re healthy. Go live.”

It wasn’t until I began to take my physician’s advice and begin to trust that God is greater than everything, including my disease and all my fears, that I began to move past the fear.

I recall sharing the original physician’s diagnosis with Dr. Irene Maumenee, head of Wilmer Eye Institute at Johns Hopkins—one of the leading eye centers in the world. Her response was, “Find another profession? Why? You paint until you can’t!” Even now, as I write her charge, I get shivers of joy and thankfulness. Yes, that is how we should live, echoing Jonathan Swift: “May you live all the days of your life.”

I left there with a new lease on life. Instead of living in dread, I began to live with optimism again. Though fear might be a part of the battle, it need not prevail.

How do you compensate for both vision and hearing loss?
I’ve had a few audiologists say that one hearing aid would do me fine, but I always hear much better with two. Digital hearing aids are such a blessing. Audiologists are able to fine-tune the instruments to really hone in on what you can hear. Transpositioning is a wonderful technology, as it moves sounds outside of your hearing range to within your hearing range. Regarding my field of vision, it’s a definite challenge. I have to do a lot of scanning, and memorizing where things are really helps out a lot. I’m comfortable in familiar environments. Being in a new place or a place I haven’t been to in a long time can be stressful until I learn where everything is.

Last year, my doctor at Wilmer Eye Institute, Dr. Hendrik P. M. Scholl, told me that I have about a 17-degree visual field in each eye. That’s really small considering normally we have about a 200-degree visual field. When he told me that, I actually felt like a walking miracle, considering I’m able to do a lot of things with such a narrow range of vision.

For example, I still play tennis. The funny thing is, I can hit a ball coming at me 100 mph, but I have a difficult time finding the ball on the court two feet away. My friends help me with comments as, “Tim! nine o’clock short range!” to help me locate the ball. The perplexed look of bystanders is priceless!

Having a extremely narrow range of vision requires extra planning. Whenever I move I have to carefully look to my left and right to see if anybody’s coming. Going down the steps can be challenging because I can’t see the shadows that indicate the steps. I never know if I’m going to miss a step; falling kind of hurts, I try to avoid that!

Honestly, I am just very thankful that I still can paint. I don’t take it for granted, and each day I wake up and I can see, I smile and think “Yes! I can see!” It’s a great way to start the day to be able to see and hear and move. I’ve learned to give God many thanks for the told simple things. It doesn’t take much for me to be content like it used to.

How did you prepare—if one can prepare for such a thing—for losing so much of your sight and your hearing?
Honestly, I don’t think you can be prepared. I asked Dr. Maumanee, “Should I start learning Braille?” She replied, “No, you really can’t. When the time comes,
then you can go down that road.”

I remember seeing a book some time ago titled, Just Enough Light for the Step That I’m On, by Stormie Omartian. That’s how God has covered me; he doesn’t give me a beacon to shine a mile down the road, but he always provides enough light to get by right here, right now.

I’m going to take one step at a time, and try to enjoy the moment. And who knows? As Clint Eastwood said, “Tomorrow is promised to no one.” Enjoy and make the most of today.

How does the limited field of vision affect your everyday life?
I don’t yet walk with a cane or any other visual assistance, so to everybody else I look completely normal. My disability is invisible to them. But what they don’t know is that I can’t see anything except what’s right in front of me, which means I walk into people, cut people off, get too close to people, and so on.

For example, I would walk into a store, I see a line, and I get in at what I see as the end of it. Somebody taps me on my shoulder and says, “Who do you think you are? Cutting in front of people? Think you’re better than us?” Oftentimes, there’s not enough time to explain, so I get some dirty looks.

Every day, Kim and the kids—Lindsie (31), Drew (19) and Chloe (13)—are my eyes and ears, always working doubly hard to watch out for me. I marvel at their patience, repeating things over and over. Every day is an adventure.

I would imagine that one of the biggest changes you faced was giving up driving and the lack of freedom and independence that followed. The worst! Yes, it was hard, but it’s also a relief! I hated giving up independence, and I hated having to be a burden to everybody else, but I also didn’t want to cause an accident and hurt someone.

It’s definitely been an adjustment, especially for Kim, being the only driver at home. I have to do a lot more planning, and be ready to go at a moment’s notice when someone offers a ride. I keep a running list of things I need, so that when a ride becomes available, I’m ready. I guess I have to think a little bit more about details than I’m used to. Kim’s been great, adjusting without complaint.

Your father, William T. Chambers, is also a portrait painter. When did you discover you had talent?
I always loved to draw, and my parents gave me plenty of paper and writing instruments to draw with, and of course I learned a lot from my dad. I still do. Growing up, I spent most of my time playing outside. During the school year my favorite class was art. I would always go way overboard on the assignments and just loved it. My friends and I used to dream that we would play for the Chicago White Sox or the Cubs, but I always knew that I was going to be an artist.

Tell me about your art education.
My art education isn’t straightforward. I had a few scholarships out of high school to colleges, but I quickly realized I wasn’t going to learn anything. My dad had set a high standard of instruction for me.

During my freshman year at the University of Minnesota, my dad found an apprenticeship in an arts studio in Minneapolis. I studied with Richard Lack during the day, and took courses at the university in the evenings for two years. I began studying with Impressionist Henry Hensche at the Cape School of Art in Provincetown, Massachusetts, in 1983. It was there that I found my love for color.

Also, it was at Provincetown where I met Cedric Egeli, who invited me to study with him in Annapolis, Maryland. Cedric and his wife Joanette, both amazing artists, had a profound influence on my art. Cedric is a thinker, who believes understanding and keen observation are essential to good painting. Throughout the years I have continued to paint with them in the summers on the Cape.

I also studied at the American Academy of Art in Chicago, as well as with Sebastian Capella near San Diego.

How has your condition challenged you in your portrait business?
One question people ask me is, “Well, how in the world do you handle a portrait sitting?” People expect a portrait artist to have the best vision in the world, but I still can create beautiful paintings, even if I can’t always see where I’m walking. It’s a funny paradox. Kim and I go to portrait sittings together. I follow her around—she knows what I need to do and what I’m looking for. We set up, I get to know my surroundings, I get to know my subject, and I get to work.

I can see directly in front of me what I’m looking at; I just can’t see off to the side. But then again, a portrait is about the person in front of you. I just have to work at it a lot harder than I used to. With some customers, a friendship is established. After receiving a portrait that exceeds their expectations, I share with them about my condition, and they want to know more. But, if I share that I have an eye disease with a new client, most will view the combination of an artist with an eye malady as incompatible, and will politely show me the door. What a pleasure it is to produce a beautiful portrait for a client to cherish.

The truth is that a good portrait or painting requires a lot more than vision. It involves one with a heart and mind that truly is excited about life and is able to recognize the essence of it.

Tim Paintings

What attracts you to portraits? Do you paint other subjects?
I love painting landscapes, but portraits present the greatest challenge to an artist. My dad always said that portraiture is the king of art. He’s right. To capture the essence of a person is no small feat. I love getting to know my subjects, who they are, where life has taken them.

I’ve been asked what happens when I meet somebody who’s not pretty or handsome. I’ve never met somebody who is not beautiful. Every person whom I have painted, I look at in wonder, knowing that they are uniquely created by the hand of God. My goal is to learn what makes them unique, and to convey that in my painting.

Has developing your artwork into a means of earning a living changed either your work or your process?
That’s a great question. Yes, it has affected my work. Obviously, with a portrait, what I’m really painting is what is in the client’s mind, their expectation. When I paint a child, I am painting the mother’s perception of that child, not mine. I could have a portrait that a dozen people see in my studio, and they say, “Oh my goodness, Tim, you nailed that portrait.”

But then the mother might look at it and say, “That’s not my daughter.” Of course, it looks just like her daughter, but that mother knows something about her daughter that I haven’t quite yet captured. It could be something that’s in her mind, that no longer exists in her daughter. My job is to know what she’s thinking and then capture it. I spend time interviewing my subjects before I paint them.

With a landscape painting, the viewer is not as critical. My dad says, “Nobody’s going to say that tree is in the wrong place.” I can also take liberties with color, which excites me.

Define your painting style.
I define my work as Impressionistic with a complimentary focus on form and draftsmanship. I prefer a looser style, but then again I still have to have enough detail to capture a person’s unique likeness in a portrait. I am drawn to the freshness and vitality of a painting sketch, and I don’t possess the patience to finish something with a lot of detail. To this day, I still try to find that balance between a very loose painting and one that has sufficient detail. If I go too far in detail, I think the painting begins to look overworked. Students will ask me, “How do I know when my painting is done?” My answer is, “When you have achieved the concept that first struck you about your subject.”

Do you work on one painting at a time? What mediums do you use?
I’m at my best when I take one painting from start to finish. I usually have a few going at once though, because it allows me to step back and see the progress of them or what I could do to improve them before I jump back into them. I like working in oils the most, but also very much enjoy pastel and charcoal.

Describe your favorite portrait.
Two that come to mind are my portraits of Charles “Chuck” Colson (Prison Fellowship Ministries and Special Counsel to President Richard Nixon), and some outdoor family portraits.

Painting Chuck Colson’s portrait was a wonderful challenge. My goal was to convey the man who had such a great love for people, but was also a great statesman. He was gracious in giving me A Creative Life from page 13 plenty of time to interview him. Mr. Colson always wore a suit and tie, but if you look at his portrait, he obliged my request to remove his jacket. This gave him an approachable look, for he was a very kind man. When I arrived for the sittings, he would help me carry my equipment.

At the unveiling, celebrating the 30th anniversary of Prison Fellowship Ministries and Colson’s 75th birthday, many people exclaimed how the portrait really captured so many different things about him. That’s what a portrait artist wants to hear.

What is the best advice you were ever given as an artist?
I’ve been given plenty of good advice. Here are a few: Work hard. Love what you do. Listen to what your teacher says. Don’t defend your work. Just listen, trust, and do. Get your big shapes and masses right. My advice to other artists is all of the above plus you need to love what you are painting or the painting won’t work.

How do you maintain the demands of being a self-employed artist and raising a family?
It’s not easy, but working at home really helps. When you have your own business, you have to wear all the hats, and you can never just leave your job at work. At least I can’t. But then again, I really love what I do. It’s who I am. I get excited about the colors, shapes, and the people I see. I’m always painting in my head.

In our home, Kim is the one who holds everything together. I couldn’t live without her. I love spending time with my kids, knowing what they’re up to. Kim does well with details, where I am more of a big picture person. We’re opposite, but as time goes on, a very good fit.

Tell me about your newly-launched online painting school.
I really enjoy teaching. I started teaching about 20 years ago, beginning with a weekly drawing class in my studio. The most amazing thing about teaching is seeing people enjoy the simplicity of creating art, even on a basic level. The other amazing thing is what I learn. It’s one thing to know a concept intrinsically, but it’s another thing to articulate it so others can understand. I love the challenge, and it makes me a better painter.

I started IguanaPaint Academy (www.IguanaPaint.com) four years ago when families began asking me if I would teach their kids art. The parents were saying, “I have a child who’s gifted in art but I have no idea what to teach.” I started with local workshops, but then some students couldn’t attend and asked if I could teach them long distance.

We launched IguanaPaint’s first courses this past January 2014 and we now have students from five continents! In addition to my drawing courses, we have courses in filmmaking, video, colored pencil, photography, and even an Art of Engineering course.

What is your dream as an artist that is yet to be fulfilled?
To have an established gallery or company sponsor a series of paintings from travels around the world; I’d like to record a response to the beauty of those different locations and people. That would be incredibly exciting.

What inspires you?
Honestly, being alive. I love light, I love new things, I love stories. One of the great definers of life is perseverance. Life is hard. Loving people is hard. Learning to know what’s important and keeping things simple seems to help me enjoy life and find the beauty in what I see.

Cindy Dyer is a freelance graphic designer, artist and photographer in Alexandria, Virginia. Visit her blog at cindydyer.wordpress.com. She can be reached at dyerdesign@aol.com.





HLAA members! Here’s your chance to be Seen & Heard at Convention 2014 in Austin, Texas!

25 05 2014

If you haven’t been Seen & Heard yet with the Hearing Loss Association of America, now’s your chance. We still have HLAA members to profile from past sessions in D.C. and Providence, RI, but we want to collect even more. You could be profiled in the magazine or on the HLAA website!

Fill out our fun questionnaire for a chance to be profiled in Hearing Loss Magazine. Email me at dyerdesign@aol.com for the questionnaire. Fill it out, then email the file to Barbara Kelley, editor-in-chief, at bkelley@hearingloss.org. You must be a member of HLAA to participate.

Or just answer four short questions on-site and we’ll share your thoughts on our website and/or in Hearing Loss Magazine.

Wear something colorful on Friday, then pop into photographer Cindy Dyer’s traveling studio for a quick portrait session.

Looking forward to seeing everyone at Convention 2014 next month!

Friday, June 27 • 1:00 – 3:00 p.m.
Studio will be located in the Rio Grande Exhibit Hall.

S&H Group





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.





Stock Shots: Karen & Gina

15 01 2014

My friends Karen and Gina modeled for me for the Hearing Loss Magazine last month. Karen owns Karen Wyatt Skin Care, a skin care salon in Burke, VA.

© Cindy Dyer. All rights reserved.

KarenGinaBigPhotoweb





Seen & Heard: Chelle George

15 01 2014

Chelle George is our Seen & Heard profile in the January/February 2014 issue of Hearing Loss Magazine, published bimonthly by the Hearing Loss Association of America. I  photographed Chelle at HLAA’s Convention 2012 in Providence, R.I.

© Cindy Dyer. All rights reserved.

S&H Chelle George

CHELLE GEORGE

Salt Lake City, UT / Born 2.6.1968, in Redlands, CA

MY HEARING LOSS… I was talking to my mom on the phone, answering questions wrong when she said loud and clear, “For God’s sake, get some hearing aids!” I was 23 years old and 22 years later, I’m still wearing hearing aids.  My current pair are translucent red and I love to show them off.

SAGE ADVICE… In the beginning, have the audiologist adjust the hearing aids to a lower volume to get used to noise again.

FUNNY HEARING LOSS MOMENT… Getting lyrics wrong. Some years ago, my kids popped a new Eminem CD into the stereo while we were driving. A ballad came on and I just knew a big bad rapper wouldn’t be singing about that. I turned the music off with a smile and asked the kids, ‘Is he singing about being queen of his carpet?’ When their laughter died down, they told me he was singing, “I’m cleaning out my closet.” We never could sing the right lyrics after that.

FAVORITE CHILDHOOD MEMORY… Watching thunderstorms with my family in the middle of the night. We would get up and gather in front of the sliding glass door to watch.

PETS? Squeaker, my 19 lb. cat. He’s my buddy. The reason I named him Squeaker was I thought his meow was ‘broken.’ Only later did my family tell me his meow is fine and it was my hearing that was broken! At least Squeaker meows a lot, so the name still fits.

WORKING NINE TO FIVE… hairdresser, day care, hairdresser again, worked with people with intellectual disabilities (loved working with them) and back to hairdresser again.

I LOVE THE SOUND OF… I love it when it’s quiet enough I can hear the clock tick (only possible with my hearing aids in). Big wind chimes charm me. I love my grandson’s laughter and listening to drums.

IN MY SPARE TIME, I… write about hearing loss trying to get hearing people to understand what it’s like. There are so many misconceptions and I want to set them straight as much as I can.

I COLLECT… butterflies. Butterflies are about transformation, metamorphosis, a process of becoming which I identify with. A friend once told me, ‘Butterflies are Free’, and proceeded to tell me about the movie. I like that too. “There is nothing in the caterpillar that tells you it’s going to be a butterfly.” —R. Buckminster Fuller

I AM… dependable, honest and easy going.

BEST THING SINCE SLICED BREAD… Digital hearing aids. When I switched from analog to digital, I was amazed at the difference. There are so many options to chose from now and I’m glad I live in the technology age.

I AM DEFINITELY NOT… stuck up as many people assume. I just can’t hear them until they have my attention first.

PEOPLE WOULD BE SURPRISED THAT I… attended the Burning Man event for years. I still go to the regional events and find that all the people are patient and accepting of hearing loss.

MY THREE FAVORITE THINGS ARE… My computer, my smartphone and my car. They keep me independent.

GREATEST ACCOMPLISHMENT… Helping to pull together Salt Lake City’s first Walk4Hearing in 2010. It was the first big event I ever organized and it was all done by volunteers.

I HAVE A WEAKNESS FOR… homemade cookies!

FIVE PLACES I HAVE LIVED… Blythe, CA; Twentynine Palms, CA; Albany, GA; Bullhead City, AZ; Salt Lake City, UT

I CANNOT LIVE WITHOUT… my hearing aids, a book in my hand and laughter.

FAVORITE QUOTE… From Auntie Mame—“Live! Life is a banquet and most poor suckers are starving to death.”

I like reading people’s personal stories in Hearing Loss Magazine.

 




2013: A Visual Recap

3 01 2014

I’ve picked one photo from each month of blogging in 2013 to recap the year visually (starting with December 2013 and working my way back to January). Now here’s to 2014—hoping it is a year of immense creativity, staying connected to family, nurturing friendships both near and far and old and new, growing my graphic design and photography business in fresh and challenging directions, continuing to dust off my rusty sketching and painting skills, hosting soirees, decluttering my physical space, communing with nature, photographing more flowers and bugs, updating my garden with quirky and photogenic new plants, hitting the road in search of adventure (and fresh photographs), honing my writing craft, acquiring new skills and learning something new every day.

© Cindy Dyer. All rights reserved.

NicoleCloseup

GBH Stretching

Sunset Through Trees

Rehoboth Sunrise lorez

CHM Summer 2013 Cover Blog

Portulaca lorez

BugOnPricklyPearCactus lorez

PainterlyDaffodil

MattShellyBlog

CHM Winter 2013 FInal Cover

Sunrise Lake Lavon





The Not So Elusive Josh Vinyard

6 11 2013

Dancer Josh “Elusive” Vinyard is our cover feature for the November/December 2013 issue of Hearing Loss Magazine, published bimonthly by the Hearing Loss Association of America. After seeing Josh on America’s Got Talent, I told HLM editor Barbara Kelley about him and then got the ball rolling to contact him. I was excited to learn that he lives in Austin, less than a two-hour drive from my family’s house in San Antonio!

Very special thanks to photographer Brian K. Loflin for assisting with the photo shoot of Josh all around Austin, as well as the images he shot for the feature. Brian was my boss many years ago and has long been my photography mentor. Austin is full of very colorful, graffiti-covered walls that made for a perfect backdrop for some of our shots. You can find Brian’s work at www.loflin-images.com. Visit his natural science photography blog, full of informative how-to photography articles, here: http://bkloflin.wordpress.com/.

Thanks also to Josh’s friend, Peter Tsai, for the photographs he contributed to the feature. Visit Peter’s website at http://www.petertsaiphotography.com/blog/. Visit Josh Vinyard’s website here.

____________________________________________

The Not So Elusive Josh Vinyard by Cindy Dyer

One night I was flipping through TV channels and paused at just the right time to meet 22-year-old Josh “Elusive” Vinyard, a semi-finalist on America’s Got Talent (Season 7). I don’t usually watch the show, but when I paused, there was Josh—sharing his experience with hearing loss. I watched his performance and was mesmerized by his talent and athleticism. Through a web search, I learned that he lives in Austin, less than a two-hour drive from San Antonio where my family lives, so I could easily interview and photograph him the next time I was in the area. I sent him an email introducing myself and he responded immediately. I spent the entire day with Josh, photographing him and getting to know this very talented young man. (Cover photo by Cindy Dyer)

Josh Cover

Josh is unlike other subjects I have photographed for Hearing Loss Magazine. All of the other people we have featured have faced their hearing loss and availed themselves of the amazing technology. Josh has avoided it, and I don’t think he really knows what it could do for him. His personal choice is to not wear hearing aids, despite his mother’s pressure to do so when he was younger. If he were armed with more knowledge about the products available to athletes, I think he might possibly consider it in the future. What do you think?

Tell me about your hearing loss.
I honestly don’t know many of the details of my hearing loss from when I was younger. I was born with holes in both of my eardrums. I have had four surgeries on my left ear and one on my right ear. Thankfully, having surgery to repair the hole in my right eardrum worked. The next two surgeries were on my left ear. The last surgery was to remove a cholesteatoma. [A cholesteatoma is an abnormal skin growth in the middle ear behind the eardrum. It is usually caused by repeated infection that causes an ingrowth of the skin of the eardrum. Hearing loss, dizziness, and facial muscle paralysis are rare but can result from continued cholesteatoma growth.] You would think I would take the time to learn about it now that I’m older, but it has affected me so much in my younger life and I suppose I just prefer to leave it behind me.

Did you have any issues with your hearing loss when you were younger and in school?
I wish I would have had more help in school. My mother pressured me to wear a hearing aid but I refused. I thought it would further alienate me from other kids and decrease my chances for making any friends. The truth was, I was already a social outcast because I could barely hear since the time I was born.

Growing up, I had a hard time hearing people so I didn’t understand them most of the time. My solution was to stop trying to listen and play in my own imagination. I kept to myself and daydreamed all day long. I essentially committed social suicide without having a clue I was doing it. I gave the appearance of a loner, so kids labeled me as a weirdo and, presto, no friends!

The teachers accused me of not paying attention in class and, presto, angry teachers! Granted, I wasn’t paying attention, but I never understood what they were talking about every time I did try listening. I refused to accept any hearing aids. School is not a fun place when you think the teachers and students are against you. And when you’re young, you blame yourself.

JoshByBrianWere you teased in school because of your hearing loss?
I’m sure I was, but there are no specific times that I can remember. I never talked about my hearing loss when I was younger. I don’t want to say I was hiding it, but I never felt the need to express it with others. It was my personal business.

Had you ever considered wearing a hearing aid? Do you think you’re missing out on things?
I had not considered wearing hearing aids. As I said, I refused when my mother tried to get me to. The reason is because I did not want to be further segregated from the other kids. I don’t have the desire to wear one now because growing up, my hearing loss affected my life (for the better, I think) and I have discovered a lot of ways not to necessarily overcome it, but to handle it. I feel like I would be leaving a part of me behind in a sense. As an athlete, I don’t think I could constantly wear one. When I’m working on a show, movie, or in a competition, I need to hear, but I am performing and moving around a lot.

I’ve seen the video of you breakdancing when you received your high school diploma. Was this spontaneous?
It was a little message that only I understood, but that’s all that mattered. I relied on my dancing to get me through the hard times, including school. That was my way of declaring, “This is what got me through, not you.” It sounds a little cold when I actually say it, but that is how I felt and I wanted to leave that stamp. (Photo of Josh above, left by Brian K. Loflin)

How do you communicate without the help of technology?
I read a lot of body language and facial expressions. This practice always gives me clues to the context of the discussion and then I fill in the gaps of what I did not hear. I love that I have learned to do it this way, though. I probably don’t hear everything but body language gives me an insight to what they really want to say versus what they are actually saying.

Josh Walking WallHow do people react when they learn you have a hearing loss?
The reaction is always the same. “That explains a lot.” But then, at the same time they typically marvel on how well I do despite my hearing loss. (Photo of Josh at right by Cindy Dyer)

How does your hearing loss affect your life now, including dancing?
Nothing that is really different, honestly. I ask people to repeat themselves a lot, and will offer them my explanation if I have to ask them repeatedly. I still rely on other resources for understanding people other than just hearing. My resources include body language, tone of their voice, reading their facial expression, the syllables of each word they use and lastly, the context of the discussion to weave everything together. As for dancing, it teaches me to rely on intuitively feeling the music versus counting beats.

What would you want hearing people to know about your hearing loss in order to be more sensitive and accommodating?
No special treatment needed. Just be understanding of when I ask you to repeat yourself or to speak a little louder. Just don’t try to talk in my bad ear!

If someone were to encourage you to get your hearing evaluated to see if there is any kind of technology that would help you hear better, or understand conversation better, would you give it a try for your day-to-day life outside of dancing?
I would be open to something new. I have this thought that technology won’t help me due to my strenuous physical activities. Would something fall off? Bounce around too much? That is why I have not tried anything. I guess I need more information. (Photo of Josh against the Austin skyline by Peter Tsai)

Josh By Peter 1

When did you start dancing?
I started dancing at age 13. I didn’t think about mastering the skill. I was a disgruntled, self-destructive youth. I just wanted to be good at something. At age 15, I really began to rely on dancing to fulfill me emotionally. I had felt worthless due to my social inadequacies. I remember telling myself, “You’re not good at anything, but this is what you’re best at so just try to be decent at it.”

Needless to say, I was pretty hard on myself. My dancing is the offspring of my pain, but, ironically. It has practically given me everything I have now. Pain plus dancing have made me into who I am today—a person whom I love and believe in.

Does your family support your career choice?
I have an awesome, amazing and loving family, and I love them all so much. I am the youngest and have an older brother and sister. We all enjoy our time together. It’s a rare thing that I have and I am so lucky.

My family had never really supported my dancing and stunts, but they never discouraged it either. When it comes down to it, their attitude helped a lot. People have big dreams and a lot of them fall flat on their face. They thought there was a chance I might fail trying, but they weren’t going to discourage me from trying.

When the America’s Got Talent opportunity arose, it was one of those events where they knew that anything was possible and I could achieve anything. Not that they didn’t think I had a lack of talent to do it, but just because they know how hard the world is. They fully support me now.

What is your training ritual?
I try to practice for a few hours every day. Or at least, at the bare minimum, one hour. Sometimes I will practice for six straight hours, then have a lengthy stretching session, followed by working out, then do some cardiovascular training such as running. It wasn’t until later that I learned the importance of recovery. I might then massage my body with a foam roller followed by an Epsom salt bath. My complete regimen averages about 20-30 hours a week.

I have a background in gymnastics and martial arts that I pull from for working out. Around age 20, I studied anatomy and physiology enough to begin to understand really how working out worked. That’s when I began to design my own workouts and training routines specifically geared toward Bboying.

“Bboying” stands for Break Boy. Breakers originally used this semi-acronym before the term breakdancing was popularly used. Using the Bboying is to use it as a verb, to breakdance. To call someone “Bboy” before their name is an adjective, to define them as a breaker. I do workouts and exercises that I still have not seen other people do.

What are some of the daily habits and disciplines required to become a professional dancer?
You have to work hard and push yourself. The more you sweat, the less you cry when things don’t work out. Dancing is a special field. You can’t just physically exert yourself. You have to exercise tremendous imagination and emotions. One of the hardest things to do is to simply allow yourself to relax, especially after an injury.

A dancer should have had a lot of training in various physical endeavors such as stunt classes, martial arts, etc.

How does martial arts and stunt training help with dancing?
The study of movement is important and the more you know, even if it’s just how cars move, the more you understand about yourself. Therefore, I have training in gymnastics, martial arts, dance, and Parkour. (Parkour, also known as Free Running, was originally developed as a military obstacle training to efficiently and effectively move through your environment. You can see examples of this on YouTube, martial arts, other forms of dance, and just a lot of physical activities in general.)

I do a lot of random things—all physical—that all come together and help form me either directly or indirectly as an athlete and performer.

What was your first paying gig or contest and how did it go?
My first paying gig was when I was 15. I dressed up as Spiderman and pretended to be him for a child’s birthday—doing flips and everything. I made $50 for that. I won my first competition when I was 16. I was still a self-destructive kid, but it was one of those moments that make me say to myself, “I might not be a failure. I just might be worth something.”

Do you have a “day job” or are you focusing solely on making a career out of your passion for dance?
As of now, I am a full-time entertainer for dancing and stunts. Dancing has always been fun and it is my “crutch” and it will probably continue to be. As for a choice of career though, I am pursuing the stunt realm.

Which dancers inspired you when started dancing? Who are your favorite dancers in this genre?
I never really looked up to other dancers when I was learning. In my mid-teens, though, I was heavily inspired by Bboy Physicx. (He is a Bboy from Korea). Later I tried to learn from entertainers of all types. I loved to watch Bboy Cloud. His real name is Daniel Campos but his dance name is Cloud. Michael Jackson, James Brown and others have also influenced my work. Cloud and Physicx will without a doubt always be some of my favorite dancers in this genre.

What is it about Hip-Hop dance that makes it Hip-Hop?
This is where it begins to get weird unless you already understand it. Breaking is a form of dance that incorporates any movement the individual desires to use. The term breaking came about because Bboys would always dance to the breaks of a song. Breaking is a core part of hiphop. Hip-hop’s roots are in the Bronx and its fundamentals were graffiti, DJs, MCs (rappers) and Bboys. It is a raw art form. I say this because there is hardly any money, fame, or materialistic values involved in this art—the people who are a part of it are in it just to express themselves. It’s a creative outlet and it is fun. When you aren’t misguided for the wrong values, all that is left is you. And you feel compelled to express yourself. When I’m not practicing to gain something (money, etc.) I don’t have so many external influences. Everything becomes internalized, then everything emerges, allowing me to fully express myself. It’s a hard thing to express.

What is the best way to learn Hip-Hop dance? How did you learn it?
The best way to learn is by being a part of the Bboy culture. Go to where dancers are practicing, and join them, even if you don’t know anything. I learned breaking through online tutorials, took classes for a couple of months, and attended workshops when they were available. Above all, I practiced with my community and learned a lot from them. I don’t want to say I have made unique moves as my own, but the way I do them are unique.

Do you try to push yourself in new directions with each new piece?
I do try to make my dances more elaborate and indulge in other styles. One of my favorite things about breaking is that it isn’t one-sided. Breaking is everything and anything you can take from it. You can incorporate martial art moves, other styles of dancing—even different exercises like swimming. I saw a guy who acted like he was swimming on the floor and it looked fantastic, so I use them all.

One thing I usually do not do is choreograph. The beauty and all the appreciation I find for Bboying lies within the ability to improvise. Each song is different, giving you different feelings, different tempos. Every venue is different. Every crowd is different. To adapt and be able to connect with them all is poetry in motion to me!

Have you entered a lot of dance competitions?
I have entered a lot of competitions. I entered one in Arizona when I was 18. I flew out, not exactly knowing where I was going to stay, who would be there, how I would get around, or how I would do. My expectations were pretty low and my trip was not planned at all. I just wanted to get past the preliminaries, but I ended up winning it. Talk about a surprise! Then there was the trip I took to Dallas for my 16th birthday. I had just enough money for a one-way bus ticket. I was relying on my ability to win to get the money to get back home. I lost the first round. I borrowed money from everyone to scrape together a bus ticket. Talk about disappointment!

How did you decide to audition for America’s Got Talent (AGT)?
I was extremely reluctant to audition. I didn’t think I would make it past their auditions, but after a good friend pressed me enough to actually try it out, I reluctantly did. I just walked into the building and said “I’m here to audition.” I ended up making it to the quarterfinals. Out of the 75,000 people who auditioned for the show, I was a solo performer among the 48 groups they selected. I was a little surprised, to say the least. First stop was Austin, then Las Vegas, then to Newark, New Jersey.

When you made the first cut, how did you prepare for the next step?
Once I was told I was going to Vegas, I was really surprised. This meant that I passed the audition round. To go beyond Vegas meant I would be among the quarter-finalists. So I basically made it to round three. I just improvised during the auditions, so I figured this time I’ll actually put together something good. I practiced, rehearsed and executed a very well done routine in the Vegas round. Unfortunately, it was edited around and music dubbed over instead of my actual performance.

What was the AGT experience like? Were there any pressures? How did you adjust—or not adjust?
AGT was a horrifying process, but I was able to fall back on my old nature of being able to internalize and keep myself calm. It kept me and my performances protected. I have to say I adapted as well to the pressures as any survivor possibly could. Being on a live national television show is the scariest thing I have ever done, and I’m not sure if it will ever be topped!

What kinds of things did AGT do to accommodate your hearing loss?
Nothing. They actually didn’t even know about my hearing loss until the last round of the show. They were actually upset that I didn’t tell them sooner.

What were the judges like?
The judges were Howard Stern, Sharon Osbourne, and Howie Mandel. I never got one-on-one time with any of them so I don’t know what they were really like. They critiqued my performance but didn’t offer me constructive criticism.

Judge Howie Mandel said, “…I have to say, Elusive, that usually I don’t like to combine the story with what’s happening, but your story is phenomenal—the fact that you have a hearing loss, yet music is your life. There’s such a dichotomy between your problem and what you’re doing…that you’re so inspirational. And then I watch your strength and then I watch your dancing and your ability. It just dazzles me.”

How has coming so far in AGT helped your career and visibility of your work?
Honestly, I can’t really make any firm claim that AGT has landed me any work. It is a good credential that assesses my value with clients, but it has not directly helped my career.

What advice do you have for a dancer who wants to become established in the arts? Is it important to have an agent?
I don’t believe it’s as important as people think. If an agency finds you just one audition, then they are beneficial and worth it. But too many people rely on agents. As in a lot of careers, people have to go out, hustle, and be able to find their own work. I have never had representation. My advice to others: Have fun and enjoy it. That’s the only way you’ll actually be able to get good at it.

Were you born in Austin?
I was not born in Austin, but I have lived here since I was two or three years old. I have no memories of before Austin, so I consider myself an Austinite. There is not much work for dancing gigs in Austin as of yet, but Texas just increased their tax incentives for filmmakers so that might bring in more work. I focus on film, corporate and marketing gigs in Austin.

Tell me about your commercials.
You can see most of these projects on my website (www.joshvinyard.com). I choreographed the routines myself. Commercials pay handsomely, not for the actual day rate but for the residuals. I always have a lot of fun making videos and love to experiment and find new ways to interact with the camera, the angles, lighting and how it can all influence and alter the performance.

You recently met some agents in California. How did that go?
I met with a lot of agencies but they all wanted me to live in LA. I decided my desire to work didn’t override my desire to live in LA. I am not currently represented by any agencies.

I saw in your IMDB.com profile that you have been a stuntman in several movies, including an upcoming Spiderman movie. How did that come about?
Earlier this year, I went to Los Angeles to pursue dancing and stunt work. After three weeks, I came back to Austin, heartbroken and absolutely broke. I spent the next few days thinking about giving everything up and wallowing in self-pity.

I then picked myself back up, and told myself, Yes, I can do it and I met stunt coordinator Andy Armstrong less than 24 hours later. He proceeded to put me to work on The Amazing Spider-Man 2 for two months as a stunt performer. I can guarantee that if I had kept my same doubtful mindset, it would not have ever happened.

You attended Austin Community College. What did you study?
I was studying for a bachelor’s degree in nutrition. I got halfway there before I dropped out of school to work with Andy Armstrong on the Spider-Man 2 movie, which debuts in 2014. Although I earned enough credit hours for an associate’s degree. It will be some time before I get back to school, though, because I have a career to think about now.

What are some of the current projects you are working on? Future projects?
I am working on film projects, both for dance and stunts. My dream project would be something that incorporates all aspects of entertainment—music, dance, acrobatics, special effects—just everything in general into something extremely dynamic. I have crazy ideas like being completely on fire while doing power moves, and things like that but nothing concrete is planned right now.

I know one thing for sure: It is so critical to always believe in yourself.

HLAA Convention 2014 will be held in Josh’s hometown—Austin, Texas. I think I might be able to convince him to check out the Exhibit Hall and learn about the amazing technology now available to atheletes like him. And who knows? There might be a Josh Vinyard sighting. Just look for the guy dancing off the wall!

Freelance graphic designer and photographer Cindy Dyer serves as designer and photographer for Hearing Loss Magazine. She experienced sudden hearing loss in her right ear in 1993 and had a cholesteatoma removed in same ear in 2003. She wears a hearing aid in her left ear. Cindy can be reached at dyerdesign@aol.com.

Josh’s 2009 graduation from Anderson High School in Austin

America’s Got Talent 2012 Austin Auditions

America’s Got Talent 2012 Quarter-final

Stunt Reel 2013

Fuel Rewards and Shell Gasoline Commercial





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.” 





Sole to Soul

17 10 2013

Hayleigh in pinkI met and photographed Hayleigh (left) and her lovely family in D.C. at HLAA Convention 2011. Hayleigh started her business, Hayleigh’s Cherished Charms, making hearing aid and cochlear implant ear “charms” and the whole family is involved in her venture. You can learn more about Hayleigh and her thriving business in my blog post here.

Please consider donating to their Sole to Soul fundraising campaign! Their goal is to raise $30,000 to buy 1200 pairs of shoes for children in Kenya whose school/dormitory recently burned down, forcing them to return to their homes in the slums of Kenya. They have raised $5,000 so far from babysitting, bake sales and other fundraising efforts. They plan to purchase the shoes in Kenya to support the local economy and will hand deliver them to the children in need.

And while you’re at it, send out a prayer and good thoughts of continued healing for Hayleigh, who is in the hospital in critical but stable condition.





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.





In the (traveling) studio: Gary & Cindy Trompower

14 04 2013

Gary Trompower was recently featured in our Seen & Heard column in Hearing Loss Magazine, published bimonthly by the Hearing Loss Association of America. I photographed him at Convention 2012 in Providence, R.I. Here’s a shot I captured of Gary with his wife, Cindy, after his session. You can read Gary’s fun answers in his profile here. Read it and you’ll see why I’m craving Reese’s Peanut Butter Cups right about now.

© Cindy Dyer. All rights reserved.

Gary&Cindy Trompower lorez





Seen & Heard: Don Doherty

9 03 2013

Don Doherty, a member of the Hearing Loss Association of America (HLAA), just made his Seen & Heard profile debut in the March/April 2013 issue of Hearing Loss Magazine. I photographed Don at HLAA’s Convention 2012 in Providence, Rhode Island last June.

Other members previously profiled were Danielle NicosiaJohn KinstlerJudy Martin, Anne TaylorSam Spritzer, Jeff Bonnell, Eloise Schwarz, Glenice Swenson, Laurie Pullins, Rosemary Tuite and Kathy Borzell, Tommy Thomas, Marisa Sarto, George Kosovich, Gary Trompower and Juliette Sterkens.

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.

DonS&H

DON DOHERTY, Moyock, NC / born June 12, 1946, Camden, NJ

MY HEARING LOSS… As a Marine infantryman, I lost my hearing or most of it, in Vietnam where I spent 19 months as part of a rifle company (Company A, 1st Battalion, 5th Marines, 1966-1967), following exposure to gun fire, artillery, and other very loud noises. I was 20 years old. The first sign that I lost my hearing was during night patrol or other operations while still in Vietnam. I realized I couldn’t understand what someone was saying if they whispered in my ear. I could hear that they were whispering but I couldn’t understand what the message was. I managed to survive by letting some people know I couldn’t hear, but generally I just faked it and tried to bluff my way through situations. Following my return from Vietnam I was transferred to Puerto Rico where I again had difficulty hearing. This time the jig was up and I was medically evacuated to Philadelphia Naval Hospital where I was issued one hearing aid. I needed two aids, but in those days needing two hearing aids meant discharge, and I still wanted to be a Marine. So I was grateful to have one hearing aid.

SAGE ADVICE FOR SOMEONE NEWLY-DIAGNOSED WITH HEARING LOSS…  Keep your sense of humor and lose your sense of being different. Most people who know you, know you have a hearing loss, and won’t care.

MY FUNNY HEARING LOSS MOMENT… I once went to bed and locked my wife out of the house using a chain lock. She couldn’t get in and enlisted the help of neighbors who eventually used a hacksaw to get into the house.

WHEN I GREW UP, I WANTED TO BE A… I always wanted to be a soldier or Marine. I grew up with John Wayne movies and pride in my country. I joined the Marine Corps at my first opportunity and have never regretted that decision.

MY FAVORITE CHILDHOOD MEMORY… is of being at my great grandmother’s house in the country. There were woods to explore, forts to dig, turtles, frogs and snakes to find, and quiet moments to fish. It was a magical time in the 1950s when all seemed right with the world.

FIRST THING I BOUGHT WITH MY OWN MONEY… When I was a child we used to get a pair of shoes each year from Ruby’s Shoes, a small store in Westmont, New Jersey. The shoes were $5 a pair. I always had a choice of brown or black shoes. My dad said if you want different styles and want to spend more money then you have to get a job. So I delivered bleach and got a paper route and was eventually able to buy a $10 pair of shoes.

PETS? I have a small teacup poodle that I named “Pookie Bear” and who is the joy of my life. She gives me licks and makes me laugh. Even though we graduated from Puppy Obedience School she doesn’t always listen. But then, I don’t always “listen” well either!

THE HARDEST THING I’VE EVER DONE… was graduate from college while in the military. It took me 10 years and five colleges but I was finally able to do it. I now have graduate degrees but my hardest courses were as an undergraduate, especially the math.

IN MY SPARE TIME, I… am an avid reader especially of action novels. I love Clive Cussler and Tom Clancy. I get to a point where I just can’t put the book down. As an HLAA Chapter president I am also looking for and reading anything of interest that I can share with the hearing loss community especially if it relates to a new or improved hearing assistive technology.

I MOST DEFINITELY AM NOT… a dancer or party person. Large noisy places are difficult for me with two hearing aids. I have learned to choose my hearing environments so that I have a better chance at understanding what is going on. Even with directional mics, speechreading, and a telecoil—a party environment is still just a lot of noise. Besides I have so many other things I can do.

I MISS… being able to hear like I used to or like I would want to, but then I wonder how my life would be different. For the last 46 years I have learned and adapted to my hearing loss. Many times my drive to achieve or to excel has been in an effort to overcompensate for something I didn’t have which was good hearing. I knew in my mind as long as I did things better than anyone else, I was able to compete and be successful at whatever challenge I undertook. I think it’s a fear that many with hearing loss have that in order to be accepted we have to be better than our peers. It’s like “bluffing” or pretending to hear something when you don’t. You’re accepted and part of the group without having to draw attention to the fact you are different and have more challenges that most folks who can hear effortlessly. Yes, I miss hearing a lot, and my life would be easier in many ways, but no, my life wouldn’t be the same and I wouldn’t have the strength and adaptability that I have today.

HAPPINESS IS… a choice, an expectation and a state of mind. I see happiness as a choice I make every day regardless of where I am or what I am doing. I have been lonely on occasion when stationed overseas and far from home but I have always found something to be grateful for. I try to surround myself with people who laugh and are having fun in their life. By the same token I try to avoid those who are perpetually upset, complaining, sad or angry.

HOBBIES? My hobbies include reading, learning new computer programs, using Facebook and Twitter, playing with my dog, and doing work for the HLAA Chapter. I recently purchased a new iPad and am learning and playing with many of the applications I find. I am never bored and can always find something to do.

WHO HAS HAD THE MOST INFLUENCE IN YOUR LIFE? A Roman Catholic nun by the name of Sister Mary Walter was one of the most scholarly and understanding persons I know. She believed in my ability to get a college education regardless of the subject, the challenge or level of difficulty. As the psychology department chair she was both humble in character and rich in the ways of life. She lived on campus and her students more or less adopted her. I remember fondly her inspiring words “You can do this!” I was able to graduate from Alvernia College in Reading, Pennsylvania, with honors (and a hearing loss) because of her.

PEOPLE WOULD BE SURPRISED THAT I… am shy but might not show it, am emotional with sad movies or books (especially where an animal dies like in Old Yeller), can write poetry, collect art, will never go camping in anything more rustic than Holiday Inn, and that I still get messed up with directions!

MY LITTLE KNOWN TALENT IS… I try to share whatever I can do with others and pass on areas outside my areas of expertise. So while I may be able to help you with a resume, don’t ask me to remodel a room. I remember trying to put a rug in the bathroom. I traced an outline of the floor, turned the rug over, cut it out with a sharp knife, then flipped it over. The cutout for the toilet was on the wrong side. Another thing I will never do again is try and put together a large cardboard dollhouse that comes unassembled—just too many lettered cardboard tabs.

I HAVE A WEAKNESS FOR… Chocolate in any form, most pies, a good grilled steak and corn on the cob.

I COLLECT… colorful prints, black and white sketches, and sepia prints of an artist by the name of Herb Jones. He has often been called a “poet with a paint brush” and his work has been on the world stage. I met him personally toward the end of his career and I was struck by the beauty of his work and the humble nature of his surroundings. He lived in a small bungalow in Norfolk, Virginia, with his wife. Despite severe diabetes and failing vision he continued to paint landscapes, water scenes, and rich clouds of varying intensity. He instilled in me a love of art that I would not have had were it not for his invitation to come to his home and talk with me.

I AM… friendly, helpful and compassionate.

FAVORITE COLOR? I like and look good in green so I will start there. I like colorful shirts and ties. Aloha shirts and Jerry Garcia ties are favorite parts of my wardrobe.

FIVE PLACES I HAVE LIVED… In the military I was fortunate to have lived in many different places and experienced many different cultures. My favorite place to live was Kailua, Hawaii. I was there for three years and it was truly living in paradise. I also lived in Plano, Texas, where I learned to eat and talk Texan. My time in San Juan, Puerto Rico, was interesting but not one of my favorite places to live mainly because of the language problems. Arlington, Virginia. was an exciting place to live with a lot happening. I now live in Moyock, North Carolina, a great little country community on the pathway to the Outer Banks.

FIVE JOBS I HAVE HAD… Career Marine for 23 years, clinical director for a substance abuse facility, program director for a substance abuse facility, V.P. for marketing & reseach development, and an education specialist for the federal government

MY DAUGHTER TAUGHT ME… patience of the highest order.

I SIMPLY CANNOT LIVE WITHOUT… love and human contact.

WHAT’S THE BEST THING SINCE SLICED BREAD? Friends and a good bottle of wine

THREE FAVORITE POSSESSIONS… my photo albums, my iPad and my Pookie Bear

I WANT TO BE REMEMBERED… as a good person who took the time to help others along the way.

MY GREATEST ACCOMPLISHMENTS ARE… proudly serving as a Marine for 23 years, getting my education and raising a wonderful daughter.

Don is HLAA Virginia state coordinator and president of the Virginia Beach Chapter. You can meet Don in person at Convention 2013 as he is participating in the panel: A Holistic Approach to Hearing Health Care for Veterans: The Difference Between Getting By and Living Well, on Saturday, June 29. The panel is part of Hamilton CapTel presents Hearing Loss Solutions for Veterans.

I like stories in Hearing Loss Magazine that provide me with new information that I can share with others. I especially like hearing about new research, new technology, the capabilities of some of the newer hearing aids (like being water-resistant) and some of the best practices that are working to sustain our HLAA Chapters nationwide.





Seen & Heard: Juliette Sterkens

9 03 2013

Juliette Sterkens, a member of the Hearing Loss Association of America (HLAA), just made her Seen & Heard profile debut in the March/April 2013 issue of Hearing Loss Magazine, which just arrived in member mailboxes. I photographed Juliette at HLAA’s Convention 2012 in Providence, Rhode Island last June.

Other members previously profiled were Danielle NicosiaJohn KinstlerJudy Martin, Anne TaylorSam Spritzer, Jeff Bonnell, Eloise Schwarz, Glenice Swenson, Laurie Pullins, Rosemary Tuite and Kathy Borzell, Tommy Thomas, Marisa Sarto, George Kosovich and Gary Trompower.

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.

JulietteSterkensS&HJuliëtte P.M. Sterkens, Au.D. Oshkosh, WI / born November 10, 1957, the Netherlands

President Fox Valley Hearing Center, Inc., Hearing Loop Advocate, Larry Mauldin Award 2011, Wisconsin Audiologist of the Year 2011, Presidential Award American Academy of Audiology 2011, Hearing Loss Association of America Technology Access Award 2011, Member National HLAA/The American Academy of Audiology Hearing Loop Task Force

MY HEARING LOSS… At this time I am just starting to lose my high-pitch hearing at 6000 and 8000Hz—not enough for a hearing aid but enough to crave one with a telecoil in a looped venue. I did grow up with a father who was hard of hearing.

SAGE ADVICE FOR SOMEONE NEWLY-DIAGNOSED WITH HEARING LOSS… Learn all there is to learn about your hearing loss, the pitches that are affected, the degree that it affects your ability to understand speech in quiet versus speech in noise and once you own hearing aids know what the limitations are of the hearing aids and what is due to your particular loss. Best advice: Never purchase hearing aids without telecoils.

MY FUNNY HEARING LOSS MOMENT… My sister telling my dad, after she discovered him watching a blaringly loud TV without wearing his hearing aids (which prevented him from hearing the doorbell) and being told that he didn’t think his hearing aids were doing much for him: “Papa, they may not do much for you, but they do a heck of a lot for us!”

WHEN I GREW UP, I WANTED TO BE… an airline stewardess.

THE FIRST THING I BOUGHT WITH MY OWN MONEY…  was a vacuum cleaner.
(Oh, the Dutch are so tidy…)

IN MY SPARE TIME, I… like to go tandem biking with my husband Max.

I MISS… Dutch oil balls, a traditional delicacy on New Year’s Eve. (They are terribly unhealthy that is why we only eat them once a year!)

HOBBIES? Watergardening—we have about 30 large koi, a small turtle and several bull frogs in the pond.

DO YOU SPEAK ANY LANGUAGES OTHER THAN ENGLISH? Dutch (of course) and I reasonably get by with my Dutch high school French and German.

WHO HAS HAD THE MOST INFLUENCE IN YOUR LIFE? David Myers, America’s Hearing Loop Advocate extraordinaire. Without his support and tutelage I would not be undertaking a year of hearing loop advocacy.

PEOPLE WOULD BE SURPRISED THAT I… occasionally do talk about something else other than the looping of America!

MY LITTLE KNOWN TALENT IS… baking bread and making yoghurt.

I HAVE A WEAKNESS FOR… licorice (the Dutch, salty kind).

I WOULD LOVE TO MEET… Bill and Melinda Gates or Warren Buffet and find out if they, or a close friend has hearing loss. If they only knew how hearing loops could benefit users of hearing aids young and old alike they might just support this effort around the country.

I AM… dependable, hardworking and kind.

MY FRIENDS WOULD SAY I AM… Don’t ask her about loops, you’ll just encourage her!

MY MOTHER TAUGHT ME… to keep a clean and organized house. (Thanks mom!)

MY FATHER TAUGHT ME… to love the music of Jim Reeves.

THE BEST THING SINCE SLICED BREAD IS… my amazing iPhone.

I HAVE THE UNCANNY ABILITY TO… cook a wonderful meal in a short time with foods I find in my fridge.

MY LONG-TERM GOAL IS… to make America more accessible for people with hearing loss.

MY BIGGEST PET PEEVE IS… audiologists who dismiss hearing loops.

I WANT TO BE REMEMBERED… as someone who helped thousands of her patients enjoy life because of the audiology services she provided.

I love Hearing Loss Magazine! I would love to see a column dedicated to hearing loop progress in the country.





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!

 





The Evolution of Zac La Fratta

6 01 2013

HLAA member Zac La Fratta is on the cover of the first issue of 2013 of Hearing Loss Magazine, which is published bimonthly by the Hearing Loss Association of America (HLAA). Zac wrote the cover feature for the January/February issue.

I was first introduced to Zac at his second HLAA convention (and my first) in Nashville, TN, in June 2009. Zac was in town this past November for meetings at the HLAA headquarters in Bethesda, MD, so we set up his cover photo session in and around the office.

Zac La Fratta joined HLAA five years ago and was appointed to the Board of Trustees in June 2010. He currently serves as the secretary and is a member of the executive and strategic planning committees. As a young adult serving on the board, Zac represents the voices of young adults with hearing loss. He formerly was vice president for the HLA-Boulder (CO) Chapter and as president/founder of the HLA-Washington, D.C. Chapter. He is also the moderator for HearingLossNation, an online community for young adults with hearing loss. (A link for that online community can be found on http://www.hearingloss.org.)

Zac Blog Shot

Hearing Loss Magazine pitched Zac a few questions and topics to comment on and he took the ball and ran. Here’s what Zac has to say about his hearing loss and changing careers mid-stream. All photos © Cindy Dyer. All rights reserved.

Start at the beginning.

I was born in Denver, Colorado, on February 3, 1976. Mom checked into the hospital on a warm sunny day and checked out on a cold snowy day. I spent my childhood years in Dallas and went to high school in Lynchburg, Virginia. I have also been able to call Iowa, New York, Georgia, Oregon, and Washington, D.C., home, throughout my life.

I am the second of six awesome children—four brothers and two sisters. All but two still live in Virginia, the others in Alabama and Colorado. My extended family is gigantic and I have lost track of the growing count of cousins, nephews, and nieces. Any type of reunion that takes place, big or small, is considered the party of the year.

Describe your hearing loss.

I have a stable bilateral, normal steeply sloping to profound sensorineural hearing loss acquired from exposure to bacterial meningitis at eight months of age. It is not clear whether meningitis or the ototoxic medications I received for treatment contributed to the hearing loss, but I consider myself extremely lucky that the hearing loss was the only negative outcome.

My first spoken words (according to dad) were “hold me” after persistent, unsuccessful requests to be held through gestures and crying. Sign language was actually my first language before I started talking around three years of age. After leaving a pre-school that promoted total communication, spoken language became my primary mode of communication. I once again started learning sign language shortly after I began embracing my hearing loss in my late twenties. I sign at a proficient skill level conversationally and in the audiology clinic.

My hearing loss has always been underestimated, perhaps because I received intensive speech therapy. Also, I never sought accommodations in high school or college. I’m not saying this was a good thing not to use accommodations, it’s just a fact. So, I always chuckle when audiologists are shocked and astonished after reviewing my audiogram.

Do you wear hearing aids or use assistive listening technologies?

I wore hearing aids for the first decade of my life before “putting them in the drawer” for nearly 20 years. I now proudly wear hearing aids after accepting my hearing loss. I’m currently in conversations of possibly pursuing a cochlear implant. I wear high-end, high-powered, behind-the-ear hearing aids with the receiver in the canal that uses a size-312 battery. This particular hearing aid is already two model-generations old! Being an audiology student has its fun privileges in that I get to try different hearing aid technologies. They really are quite different from one another as is each person’s hearing loss.

I use different assistive listening devices that use the telecoil features in a variety of situations. For watching television, listening to music, and talking on a cell phone, I take advantage of the SurfLink streaming feature that comes with my hearing aids. I occasionally use FM technology if it is readily available in large group settings. I heavily rely on closed-captioning technology. In fact, my family and friends automatically turn the closed-captioning on for me, and some even leave it on permanently. I recall my first closed-caption decoder box my parents got me for Christmas one year. It was one of the most memorable gifts I have ever received. I also won’t attend a movie showing unless some form of captioning is available.

TOC Zac La FrattaWhat was it like growing up with hearing loss?

Growing up with a hearing loss has been a roller coaster ride for me, manifesting throughout different phases in my life. I have experienced a range of emotions—embarrassment, confusion, anger, fear, depression, acceptance, and finally, peace.

I often wanted to forget I had a hearing loss, but with constant reminders from family, friends, and strangers, not to mention my own struggles, I could not escape reality. I would frequently be asked the same question along the lines of: “How can you hear on the phone?” “Are you Australian?” “Can you read their lips?” “Do you sign?” and on and on.

Tell us about going to school with a hearing loss.

I received early intervention services through The Callier Center at The University of Texas at Dallas and was mainstreamed in both private and public schools.

I have vivid memories at Callier of happily clanging bells with dozens of other children with hearing loss, to what was supposed to be the “Jingle Bells” tune. The proud parents in the audience merrily sang along as if nothing was out of the ordinary. I have many other good memories from my time at Callier. However, I do recall, even at this pre-school age, my gut feeling that something was off, especially when I was instructed to wear uncomfortably loud devices on my ears.

To my parents’ horror, I reacted by flushing those expensive devices down the toilet. This event was the beginning of my resistance to wear hearing aids and my resolve to be “normal.” As hard as I tried, there was no escaping my hearing loss as it presented various inevitable challenges throughout my life. I had my share of bullies and academic struggles during grade school. Although the bullies never went away, my academic struggles dissolved after receiving appropriate intervention in public school settings, even after I discontinued wearing hearing aids in junior high school.

Professions—past and present

In my determination to be a successful, normal person, I managed to get through college and enter the software consulting industry without any accommodations. I spent a decade in the IT industry as a business analyst working with Fortune 500 companies.

I felt accomplished and had success in this industry; however, I no longer had the passion or drive to maintain the intensity required to keep up with the demands of the job description. Much of my role consisted of client interviews, managing meetings, and handling conference calls, all of which are a nightmare for the person with a hearing loss, especially without the use of assistive listening technologies or other accommodations.

I came to the realization that I had reached my peak and landed on a plateau in terms of fulfilling dreams and ambitions. I knew instinctively that in order for me to grow and move forward, I had to acknowledge my hearing loss and be comfortable and willing to ask for help.

However, I admit, by this time I was burned out and ready for a new career that inspired me, yet I didn’t want unnecessary hardship. I know it’s unrealistic that a new career wouldn’t bring challenges but this is the way I felt at the time. I needed a break from the day-to-day hassle of communicating on the job.

So…what happened next?

In 2007, my audiologist in Colorado asked me to interview with NBC’s Colorado & Company to share my experiences wearing new hearing aids for the first time in nearly two decades. (Remember, I denied my hearing loss and didn’t wear them.) There was an audiologist on the set and to my pleasant surprise, he also had a hearing loss and wore hearing aids. I was inspired learning about his journey.

The light bulb went off immediately and I knew a career in audiology was my calling. The following year, I was a registered full-time student at Colorado University at Boulder to fulfill the prerequisites required to enter an audiology program. At the time, it made perfect sense for me to pursue audiology as a profession. Having a hearing loss myself, I wanted to find new ways to contribute to the community of people with hearing loss. I was interested in working with children with hearing loss and their parents. I also had a burning desire to understand my own hearing loss from a clinical view and obtain the best resources available to make my life easier.

I am completing my clinical doctorate studies at Gallaudet University’s audiology program and will graduate in August 2013. Meanwhile, I am completing my externship (a.k.a. “residency”) at the audiology clinic at the University of Colorado Hospital. I also serve as an audiology LEND Fellow with the JFK Partners program in Colorado to continue my training with pediatric audiology through various multi-disciplinary models.

I’ve completed clinical audiology rotations in the Washington, D.C., metropolitan area at an ENT private practice, Children’s National Medical Center, and The River School. I am also proud to work with several programs at the Marion Downs Hearing Center in Colorado, including Campus Connections, Building Communication Bridges, Infant Hearing Screening Program, and Teen Day. In addition, I had the privilege of teaching the Peer Mentoring Certification Training Program at Gallaudet University for two years.

Describe a typical day in your externship.

I am fortunate to be completing my externship at the University of Colorado Hospital because it provides a great, all-around experience. In addition to working with audiology’s bread and butter—administering hearing tests and working with amplification technologies with a diverse population—I also work with balance testing, cochlear implants, and infant hearing screenings. My favorite part of my externship experience is counseling. From my personal experience, I can connect with many of my clients, especially parents of children with hearing loss.

Zac Outdoors LargeWhat (or who) do you think contributed to where you are today?

I have a supporting cast who believes in me, instills in me the confidence and courage to be the best I can be, and above all, loves me. I can’t underestimate the power of my family, mentors, and friends when it came to encouragement and support.

After having worked with parents in the audiology clinic, I discovered that I took for granted the challenges my own parents experienced to ensure I lived a great and normal life. I am forever grateful for how they raised me, taught me independence, and always provided a sense of belonging. They did an amazing job even with limited educational resources for kids with hearing loss.

My brothers and sisters also are a big part of who I am. They provided the social inclusion and unconditional love I needed during my childhood. They showed me how to be creative and silly. We had fun growing up and they created a safe haven for me to be myself. Since I am second to the oldest, I babysat my siblings on a regular basis, and it was always fun to create games and activities to keep them entertained. My brothers and sisters intuitively understood my hearing loss, oftentimes sacrificing their own needs for mine. They accepted that my hearing loss was a part of who I am and accommodating me was part of our family’s daily routine.

I am lucky to have the quality of friends I have made over the years. I didn’t have an abundance of friends growing up, but the ones I made were compassionate and trustworthy. As a kid, I latched onto friends who had similar interests and didn’t get bored doing the same things over and over (boxcars, Transformers, and G.I. Joe’s!). Eventually, we grew out of toys and took on sports.

Like my family, my friends never let my hearing loss interfere with our friendship. My friends might never have fully understood my hearing loss, but they always had my back. There were even practical jokes at the expense of my hearing loss but I knew I was accepted as one of the gang.

A favorite story was on a Halloween night. We were dressed in fun costumes and enjoying ourselves. One of my friends, known for his one-liners, got everyone hooked on over-enunciating one particular line from a movie throughout the night—“What the problem is?” (A line void of good grammatical form so it was hard to grasp.)

The problem was I couldn’t figure out for the life of me what they were saying all night. I finally had the courage to ask, “Are you saying ‘hippopotamus?’” And with that for the remainder of the night, “hippopotamus” was the new one-liner.

My mentors—a few teachers and speech-language pathologists—were pivotal in how I connected and fit in with mainstream society. We spent countless hours working on my speech and academic skills, as well as boosting my self-esteem. To this day, I have been unsuccessful in tracking them down to show my appreciation to all they have contributed. (If by some miracle you are reading this, I thank you!)

There is no one who understands me and my hearing loss as well as my girlfriend, Maureen Shader, whom I affectionately call Mo. More importantly, there is no one who has as much patience in regard to my hearing loss as she does. It amazes me the sacrifices she has made over the past few years to contribute to our powerful and fulfilling relationship. Mo does it all! It is the little things like her continuing efforts to face me when she speaks, constantly carrying hearing aid batteries in her purse, sitting quietly with boredom in the car while I drive (driving poses a large obstacle to lipreading), and giving up our time together while I put time into advocacy projects for those with hearing loss.

Without question, Mo is my biggest supporter and advocate. It certainly helps that she is also an audiology student and is proficient in sign language. We have a running joke that all that is missing is for her to have a hearing loss too. I thought I was destined to have a relationship with a woman with a hearing loss, someone who could walk in my shoes. In reality, I could not be more grateful that Mo doesn’t have a hearing loss. I admit it is nice to have a good set of ears around. As it should be, our different levels of hearing doesn’t matter. It’s about the person and the values you have in common, not the hearing loss. But it does help that she understands.

Hey Zac, did you have anything to do with you?

While all the important people in my life have been a solid foundation, okay, I’ll give myself a little bit of credit. Early in my life, I spent much of my time playing soccer and tennis since it was an easy way to escape from all of my struggles. My parents understood how important this was for me, so mom became a soccer mom and dad was my biggest fan. Winning and stardom on the playing field made me feel good about myself, so naturally I was determined to win off the field too, just so I could feel normal and accepted.

My family and friends can attest to this, I became fiercely competitive in everything I did, which I now know was annoying and exhausting for those close to me. But this tactic was my survival card, getting me through school, bullies, and feeling vulnerable. After college, this behavior became less and less effective and useful in my life. It is not a coincidence that after accepting my hearing loss, I discovered that this trait was unhealthy, so I began to channel my competitiveness in a productive manner in everything I do. I am able to use this new tool to accomplish things that benefit the community and society and are important for myself to feel like I’m making a contribution.

Tell us more about how you think people see you.

The consensus among my family and friends is that they often forget that I have a hearing loss. I honestly don’t believe that is true, rather they are fully aware but do not perceive my hearing loss as a disadvantage or a disability for me since they simply do not find themselves needing to compromise their own lives to accommodate me. However, they can recall quite a few occasions where they’ve advocated for me, remembered funny stories related to my hearing loss, or are reminded of events pertaining to my hearing loss.

When I am socializing, people often ask my friends or family members why I speak the way I do, why I am standoffish, why I frequently need repetition, or simply say “what’s up with the hearing aids?” Occasionally, people who are aware about hearing loss (through their own family members, friends, or co-workers) will inquire about my hearing loss.

My family always shares that they are inspired by how I’ve handled my many adversities—such as educational and social challenges. One of my brothers reflected that after having gone through middle and high school himself, which he considers one of the more difficult challenges of life, is left inspired that I was able to work through the same challenges in addition to having a hearing loss.

One of my sisters believes that I compensate for my hearing loss with a sixth-sense, or super-hero ability. She reflects that this trait equates to my determination to excel, especially when faced with challenges.

The family also has tons of fun with my hearing loss too. Long ago, audiologists told my dad that I have some residual low-frequency hearing, so he brilliantly exaggerates a low voice when he calls my name. My family and friends think it is hilarious, but it works! The whole family loves home signs, particularly “bathroom,” “stop,” and “hurry.” My family also never lets me forget how I have funny ways of saying words like “ridiculous” and “scissors” or how I am constantly mixing up idioms.

Tell us about getting involved with HLAA.

When I made the decision (and yes, it was a decision) in 2004 to accept my hearing loss, I went all out by launching “Deaf-inite Entertainment”—a fund-raising project to raise awareness among the hearing loss community. It was an exciting project that raised funds to provide a free open-captioned showing of Harry Potter and the Prisoner of Azkaban at the local theater and to donate to the Starkey Hearing Foundation.

During this project, I met many wonderful people with hearing loss, including Debbie Mohney from the HLA-Boulder (CO) Chapter. Debbie planted the seed for me to join the chapter because she knew it was an opportunity for me to expand my role in the community of people with hearing loss.

Her patience and persistence paid off when she convinced me to attend my first chapter meeting in 2007. Debbie wasn’t kidding that I’d benefit from joining this chapter, because a few months later I attended my first HLAA Convention in Reno in 2008 thanks to a scholarship the HLA-Boulder Chapter awarded me. It was at this convention that I met a small group of young adults with hearing loss for the first time. I had never been in the presence of so many people my age with a hearing loss!

To say I haven’t looked back since then is an understatement. I always was a happy person, compensating for my hearing loss in the most competitive ways. But it wasn’t until I accepted my hearing loss—even embraced it as I like to describe my experience—that I began to understand the significance it’s had on my life.

Moving forward, there are a lot of things to do in both my personal and professional life. First on the list is to find ways to get more young adults with hearing loss involved in HLAA. Read on about the 100 Portland initiative. I hope to see you in Portland, Oregon, this June for HLAA Convention 2013.

Zac La Fratta lives in Denver, Colorado. In addition to his studies and the 100 Portland project, he enjoys playing tennis, dining out with his girlfriend, traveling to new places, and spending time with friends and family. He recently discovered the joys of cooking and experimenting with different recipes. You can e-mail him at zachary.lafratta@gmail.com.

Also in this issue: Zac La Fratta debuts 100 Portland, an initiative to attract young adults, ages 18-35, with hearing loss to come to HLAA Convention 2013 in Portland, Oregon, this June; audiologist Brad Ingrao’s article, A Rose by Any Other Name: PSAPs vs. Hearing Aids, takes a close-up look at hearing devices advertised on TV and in magazines; HLAA’s Director of Marketing and Events, Nancy Macklin, shares highlights for the upcoming Convention 2013; Stephen O. Frazier and Sally Schwartz discuss induction loop technology in their article, The Often-Neglected Neck Loop; audiologist Mark Ross reveals why simply giving a person who is elderly a hearing aid doesn’t always get to the heart of the matter of not hearing well in his article, Older People with Hearing Loss: Aural Rehabilitation Might be More Necessary than Ever; Sally Edwards writes about how life doesn’t always go as planned, especially when a hearing loss interrupts those plans, in Labors of Love; and HLAA member and Reeses Peanut Butter Cup lover Gary Trompower is profiled in Seen & Heard.

KNOW SOMEONE WITH HEARING LOSS? Give them a gift membership to the Hearing Loss Association of America. Visit www.hearingloss.org for more information.