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Florence Henderson: The story many never knew

     “Although Florence Henderson’s otosclerosis was apparently treated at a time that enabled her to benefit more than me, her picture as well as those staring out from those frames in my surgeon’s office reminded me that my former doctor was wrong in telling me that I would be unemployable by the age of 50. I was 45 years old at the time, and the stapedectomy served me well for another ten years until I received my first cochlear implant. ” mw

florence_henderson_3Photocredit:  By Greg Hernandez, CC By 2.o (https://commons.wikimedia.org)

Like many Americans, I was shocked to learn this morning that Florence Henderson had passed away.  She was health-oriented, slender and a seemingly ageless beauty.  Her time on The Brady Bunch seemed to make her the eternal “mom” in her orange kitchen for those who are part of Generation X.  But her life touched mine in a way she will never know.  Like me, she had otosclerosis and she led a proactive example of how we can focus on solutions rather than problems.  She continued to perform, despite the hearing loss few knew of.

In this condition, the bones in the inner ear called the stapes, anvil and the hammer become “arthritic” and stop stimulating sound.  In addition, the tiny bones break and form blockages in the ear canal.  This condition is more prevalent in young women of child-bearing age, but still, there are many men who develop this condition.  It is often hereditary, although many bypass inheriting this condition.

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Photo from http://www.nih.gov

For over a decade, I entrusted my hearing healthcare to one doctor for my healthcare.  A huge mistake. He ended up being the head ENT doctor at a regional hospital so I trusted he was a pro.  He told me there was no hope for me and that I would be “unemployable” by the time I was 50 years old.  I remember feeling like I wanted to scream and vomit at the same time.  The truth was the Americans with Disabilities Act was about to be signed and there was already an operation called a stapedectomy which could have helped me.  The otosclerosis continued to permeate my ears and damage my hearing.

Then one day a friend with hearing loss recommended that I try her audiologist located on the Grand Concourse in the Bronx.  Melanie drove me to his office on a crowded Bronx street with cars double parked, — a neighborhood I remembered visiting as a child with my parents for school clothes at the famed Alexander’s.  Richard Cortez, M.S. was a kind and intelligent man.  As my hearing declined, he witnessed many visits that ended with sobs and resistance to acceptance of my new “self.”
One day, Richard Cortez asked me if I ever heard of an operation called a stapedectomy where an artificial stapes is placed in the ear canal.  I hadn’t.  He gave me a small card with the name Alan Austin Scheer, MD.  He assured me if there was any hope of helping me, this man could.

Dr. Scheer was considered “the” doctor to see for stapedectomies, and he even patented the prosthesis device that would later be inserted in my left ear.  As I entered his office uptown on Park Avenue, I noticed a” wall of fame” containing pictures of celebrities he had operated on. People like me who had otosclerosis.  Florence Henderson was the first to catch my eye.  Then Lorne Greene and others.  Below the pictures was a tapestry of Biblical quotes a woman had put together as a gift of gratitude for his work.

The quote that always stayed in my mind was “…and in that day, the deaf shall hear…”  Isaiah 29:18-20.

Although Florence Henderson’s otosclerosis was apparently treated at a time that enabled her to benefit more than me, her picture and as well as those staring out from those frames on the dedicated “wall of fame”  reminded me that my former doctor was wrong in telling me that I would be unemployable by the age of 50.  I was 45 years old at the time, and the stapedectomy served me well for another ten years until I received my first cochlear implant.  Today, many people with the same condition would probably be treated with Cochlear’s BAHA or a cochlear implant.  And to stress my point, Florence Henderson continued to thrive for decades after receiving her bilateral stapedectomies.  After her operation, Florence Henderson formed a longtime association with the famed House Ear Institute as well as many other charities.

To me, Florence Henderson  put a face on this little-known condition called otosclerosis and I thank her for that.  To me, it was not a “wall of fame” in the end, but a wall of hope.  Despite the fact that her death has come as a shock, she knew how to live well.  May she rest in peace.

 

 

A Tale of Two Canines

 

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Bartram and Noah

 

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Melanie, Bartram and Noah

Meet Melanie Riordan, a woman with quite a story to tell!

In 2004, Melanie discovered that she had a brain tumor and her whole world came crashing down on her.  All the “what ifs” ran through her mind.  Suddenly, she felt it necessary to determine what she would do if her life came to a crashing halt.

She was in a relationship with a good man.  The thought of dragging him into her crisis led her to confront him and end the relationship.  He refused to let her go.  He said he was in the relationship for the long haul, and besides he loved her.  Not only did Melanie survive, but she thrived.

Melanie’s hearing was affected by the brain tumor, and she received a BAHA implantable device by Cochlear Corporation www.cochlear.com two years ago.  She also enlisted the help of Canine Companions for Independence,  www.cci.org, and received her first dog, Noah.  Noah passed away in 2016, and Melanie received a second service dog named Bartram in 2016 as well.  Both Noah and Bartram were always acutely attuned to Melanie and her environment.  Noah, who was with her since 2004,  always sensed the onset of a migraine headache related to her brain tumor.  During one period,  Bartram constantly nudged her to go outside the house, and he would even sit in front of the door so she wouldn’t be able to get back in.  Shortly thereafter, it was discovered there was a slow gas leak in the house.

What follows is a question and answer session regarding her experience with dogs for the deaf.  Even if you are not considering getting a service dog, this is an amazing tale.

As a recipient of a CCI Service Hearing Dog, can you tell us approximately how many commands the dogs are capable of responding to?

There are about 25 BASIC CCI dog commands that all CCI dogs know.  Then depending upon the placement during/after advanced training will determine how many commands the CCI dog will respond to depending upon job role for the CCI dog.Some basic commands are as follows:

  • Bed: dog lies down on target
  • Car: dog loads into car
  • Here: dog returns to you
  • Down: dog lies down
  • Hurry: dog toilets
  • Jump: dog places whole body on top of object
  • Kennel: Dog will go into kennel
  • Let’s go:  Dog moves forward with you
  • No/Don’t: Verbal correction to your dog
  • Off:  dog will return all 4 paws to ground
  • Ok: dog is permitted to eat or drink
  • Quiet: dog stops barking
  • Release: dog is permitted to take break while performing (like to say hello to someone)
  • Shake: dog will extend paw towards person
  • Sit: dog places rear end on ground
  • Wait: dog will not move forward until you give command “here”

Some Alerting Sounds May Be As Follows:

  • Telephone
  • Doorbell
  • Door Knock
  • Alarm Clock
  • Smoke Alarm
  • Your Name
  • Police Sirens
  • Timer on Microwave
  • Beeper on Stove/Oven
  • “Name:”
  • Go get “name:”

With CCI hearing dogs you can use ASL as well.  You must make sure you have eye contact when giving hand gestures to a CCI hearing dog.

As time goes on, you can add an unlimited number of commands.

Notable, CCI hearing dogs are the only dogs that are trained on escalators.  This is good to know because many persons with hearing loss have balance issues.  Also, the dog can help the recipient tell which direction a sound is coming from.

The CCI website describes a two-week training period for the recipient.  Can you tell us what happens during those two weeks?

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Bartram at the Santa Rosa, CA headquarters

Classes run from Monday through Friday from about 9:00am to 4:30 pm. Saturday and Sunday are usually free days.  The first day covers introductions, campus information, tour and expectations.

Classes are offered in both voice and ASL.  If you don’t require ASL your chances of getting into a class sooner is sometimes possible.  The wait list for training is two months to two years.  CCI tries to match a recipient with an appropriate dog.  Once in awhile a potential recipient is not considered an appropriate candidate.  Essentially, participation does not guarantee the participant will be awarded a canine companion.

During the two-week training period the participant will have an opportunity to work with different dogs to see which one works best for him.  Towards the end of the first week, he will be assigned a dog that will stay in the room with him. Each day there will be lectures, the recipient will be given a handbook and quizzes are given at the end of the day.  There are practice field trips to get the potential recipient used to being out with the dog.

CCI provides free housing for recipients during the two week training.  All campuses and rooms are handicap accessible, there is free WiFi and TV in every room and there is a central meeting room with a TV, — and there are washers and dryers.  There is a gated patio area as well.  They provide lunch, but you are responsible for breakfast and dinner and airfare to the site.  They have campuses in both Santa Rosa, CA and Orlando, FL.  There are kitchens provided if you prefer cooking to eating out.  Each dorm has a dorm keeper that will be available to you by email/phone/text if needed.  This person will be one of your first contacts when you arrive.

After a final exam, there is a graduation ceremony that will touch your heart. Here is a link.

https://youtu.be/7y_ihOpyg48?list=PLbGXIyIDEN2N0dz7qLzyTSvTaYrZiO3wx

What happens after you go home with your puppy?

You will be given the contact information of your puppy raiser with the option for you to contact them.  Remember, the puppy raiser was with the puppy for 8 weeks and cared for them completely. You will also be given the contact information of the instructor and assistant if needed.

In addition, CCI will be available to the recipient for the life of your puppy. They will follow up with you to ensure the dog is receiving good healthcare and is generally well cared for.  For instance, CCI is very strict on weight.  If they feel a dog is being neglected they will take him back.  Remember, CCI owns the dogs.

How do I connect to other CCI recipients?

Facebook and Yahoo groups are great connections to the CCI community.  Once you graduate you can join the various support groups on Facebook.  They have specific groups just for CCI hearing dogs and other service teams. They all share information, support, pictures, progress and help each other out no matter how far apart we may be.

The website states the average service life of a dog is 8 years.  When the dog becomes “retired” is he or she returned to CCI or does the recipient keep him until his death?

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Bartram assisting Noah

If you feel your CCI dog can continue to work after 8 years then you can continue to be a team.  My first service dog worked for 12 years.  I retired Noah when I applied for my successor CCI dog.  The option at retirement is that you can keep the dog as your family pet now or CCI will take back the dog and usually the puppy raiser will get first choice to keep or live with those that CCI has on a waiting list for a released service dog.  Of course Noah, my first CCI hearing dog lived with us until he was ready to cross the rainbow bridge.  He truly was an amazing dog.  He passed away June 2016.  He is missed every day!

CCI is always informed even after retirement of the dog’s passing and any issues as they keep all medical records up to date on all liters.

If a recipient is no longer able care for the dog due to illness or death, does CCI assume care?

If for any reason that the recipient can no longer care for the CCI dog then CCI will take back the dog.  Depending upon the situation and timeframe the dog could either be placed back into training for another recipient or given back to the puppy raiser or someone on the waiting list for a released CCI dog.

You will sign a contract agreement with CCI on your last day stating all this.

Regarding healthcare and personal care of your dog, what might a recipient want to know?

You are entitled and allowed by law to write off on his or her taxes anything related to the service dog as part of YOUR medical care.  So all vet visits, pet insurance, food, toys, dog beds, medicine grooming, etc. are covered.  Even the trip to CCI including airfare/car rental are covered.  If you decide to put up a fence, you can write that off as well.  It is recommended the recipient get a good accountant and keep all receipts.

If you purchase pet insurance, there is usually a discount for service dogs.

What are some of the activities recipients and their dogs can enjoy to network, get involved and further spread the word about this wonderful organization?

CCI has various presentations that you can attend.  Various seminars are held throughout the year that you can attend at your closest region or any region you wish.  NJ and NY just recently had a “DogFest” that raised money for CCI.  In NY it was held at the Medford Campus and in NJ it was held at the Edison Roosevelt Park.

CCI holds campus seminars that you are free to attend during various times and at any location. Instructors will be there if more help or reinforcements are needed.  You can always reach out to CCI and if more additional help is needed they will work with you to make certain that you are always working towards a successful service team.

Is there anything else you feel is important to know before considering taking on the responsibility of a service dog?

Some may say wow! Two weeks of my time… Well it may sound like a lot to you but in reality it really isn’t enough time.  You have to remember CCI dogs are learning from day one to be service dogs.  For about 2 or 3 years they are being trained for their special roles.  You then only get 2 weeks (really 9 days) to make that connection.  Classes are intense and long even with breaks.  Prepare yourself to the lead up time.  Get enough sleep and rest while in training class.  Don’t over do it a few days before you leave for team training as you feel it during team training.  If there are time zone changes try to arrive a day earlier if available at the dorms to get settled in.

With that said, — be prepared to probably have the BEST thing that has ever happened to you ever when you get teamed with your CCI hearing dog.  Your world will forever be changed! Who in the world would think that four paws and floppy ears would be your new lifeline to the hearing world.  Can’t even describe the tremendous feeling that will fill your heart!

And oh yeah, be prepared for what I call the “magical fibers” of doggie hair that will soon become part of your home and daily wardrobe! Embrace it!!!

Thank you for being with us today Melanie and Bartram.

If you will be in Southern Westchester on Saturday, November 5, come meet Melanie and Bartram.  Melanie will be a guest speaker for the Hearing Loss Association of America, Westchester Chapter www.hlaawestchester.org, Mercy College, Lecture Hall, 555 Broadway, Dobbs Ferry, NY.  The meeting begins at 1:00 pm.

For those of you who already have a dog for the deaf, please feel free to share your experience with us by replying below.

Copyright © Mary Grace Whalen 2016. All Rights Reserved.

This story is based on Ms. Riordan’s personal experience. If you would like further information on Canine Companions for Independence, please visit their official website at  www.cci.org.

 

 

 

 

 

 

 

 

 

 

Women With Hearing Loss: Going It Alone

A couple of weeks ago, my neighbor “Margo” passed away.  Margo was in her nineties,  had a successful career in the corporate world, independently survived her husband by three decades and was still driving just a few months ago.

“She couldn’t hear, she was losing her vision and she was getting grumpy” was all a neighbor had to say about her when hearing of the news.

Was this Margo’s legacy after living in this complex for over five decades?  I knew her only surviving relative was a nephew who often sent her flowers.  She had outlived all of her relatives in her age group.

I walked past her apartment door and approached the elevator as men filled boxes with knick knacks and other mementos that probably only had value to her.  Atop the boxes of random items was an opened box of cornflakes.  What was her story?  Did the contents of those boxes tell a story about her life?

What I remember most about Margo was that she was friendly.  She remembered random facts about neighbors.  For instance, for five years, my mother was in a nursing home before she passed away.  Margo always remembered to ask me how she was doing.  She even went out and bought her a pretty sweater to wear in the nursing home.  Also, Margo had a relative who had been a professional opera singer, and she knew I like opera, so she would generate a conversation about our mutual love for the topic.  Word got out that sometimes in the afternoon Margo would get on the elevator and ride up and down and just greet neighbors getting their mail or returning from work.  But she was never imposing.  People liked her.  In the winter, neighbors would shovel out her car without her even asking for help.  Randomly, neighbors would ask her if she needed anything from the store or check to see if she was alright. Even the superintendent and porters were aware she may need a little extra help during an emergency.

Why did Margo’s passing make me ask so many questions?  Fifteen years ago this month, I was widowed after a marriage of 32 years.  I did not realize how much I relied on my husband to help me with phone conversations, to hear the doorbell or even to ensure I woke up in the morning.  Suddenly being on my own, I developed a strong admiration for women, all women, but especially women with hearing loss who rely on technology and others to ensure they are safe and tending to business in a timely way.  

Today, more than ever, there are many women on their own of all ages who are single, divorced or widowed.  Often, these women do not live with friends or relatives.  Apartment buildings are filled with women on their own, especially older women who may begin to experience their own decline.  One of the most common disabilities is hearing loss.

What are some of the things women on their own with hearing loss can do to protect themselves?

  1.  Make sure your complex has the name of next of kin or friends who will initiate action if something happens to you.  Make sure they have updated information including your doctor’s name and medicine you may take.
  2. If there is an emergency in your complex such as a fire, management may need to take extra measures to inform you and be sure you are safe.  Make sure they are informed ahead of time of your special needs.
  3. If you are taken to a hospital, make sure you have an advocate who will ensure you are hearing and understanding questions and directives.  Also, every hospital has a patient advocate if you need someone to help you. All too often, people with hearing loss bluff and are too embarrassed to say they missed instructions.
  4. Make sure you have smoke detectors, fire alarms and carbon monoxide monitors.  Many people with hearing loss do not hear at night when their hearing devices are off.  There are flashing devices and devices that vibrate to alert the person.  Many people do not know this, but many fire departments around the country supply these devices free of charge to persons with hearing loss. 
  5. Make sure at night, all hallways are well lit, throw rugs are securely in place, wires are not in a place that will make you trip.  You will rely on your eyes to compensate for what your ears don’t hear.
  6. Consider getting a service dog.  This is a big responsibility, but it may supply you with security and companionship.
  7. This one is just one of my own.  At night after turning off the lights, I keep the blinds slightly open.  Although I am on an upper floor, if an ambulance or a fire truck pull up in front of the complex, I will see the strobe light reflect on my ceiling. You may have your own little pointers such as where to position mirrors.

What have I learned from Margo?

  1.  When I moved to this complex seven years ago, I was experiencing one of the largest declines in my hearing.  I met so many neighbors at the pool, the gym or in the elevator who introduced themselves.  I was too embarrassed to admit I did not get their names.  Margo talked to everyone.  Although she missed chunks of conversation, she was never afraid to ask questions.
  2. Margo did not let her hearing loss isolate her.  She did her best to keep knowing everyone. Keeping connected is so important, especially as we get older.
  3. Margo stayed active for as long as she could in her church, clubs and social settings. She got her hair done once a week until the very end.
  4. Margo did not let anyone define her.

So when someone tried to define Margo by her failing hearing and eyesight or a bad day, I have to say he just didn’t know Margo.  If there is one thing those of us with disabilities learn as time goes on, it’s that if we don’t let these things destroy us or define us, we will come out ahead more resilient.  And Margo was one tough chick.   

 

 

 

 

 

Do persons with hearing loss experience the stages of grief? Disenfranchised grief?

In her highly acclaimed book On Death and Dying, Dr. Elisabeth Kübler Ross, a Swiss-American psychiatrist described the stages of grief one can expect to experience when losing a loved one. The beauty of the book is that it is relatable and understandable in layman’s terms rather than presenting peer-reviewed scientific evidence. While each has it’s value, many have benefited by this book which paints a picture of the human side of loss vs. the clinician’s collection of random samplings of the population.

The five stages originally noted in her book are denial and isolation, anger, bargaining, depression and acceptance. Some sources note that shock or disbelief and hope were added on later. Elisabeth Kübler-Ross noted that the stages were never intended to be in any consecutive order, and that any stage can be repeated or skipped at any time. Like grief we feel when we lose someone, these feelings can come and go. Sound familiar and relatable to hearing loss?  I think so.

Denial is common among those who begin to lose their hearing. According to a New York Times article by Susan Seliger, Why Won’t They Get Hearing Aids?, Dr. Eric Hagberg, an audiologist in Youngstown, OH and then president of the Academy of Doctors of Audiology stated that the average person waits 7 to 10 years before coming in. The article also quotes that according to Dr. Frank Lin, assistant professor of otolaryngology and epidemiology at John Hopkins University only 14% of the 26.7 million people over 50 with hearing impairment use a hearing aid.

Isolation, as we know comes naturally with hearing loss. It is the easy way out. Dr. Frank Lin has also been cited for his work on hearing loss and dementia. According to his studies, persons with hearing loss seem to have a higher rate of dementia. This makes sense because isolation causes depression, and depression is often noted as a possible contributor to dementia.

Anger– Is it healthy? Counterproductive? Is it necessary to come to terms with any loss? How could anyone not become angry by the frustrations of hearing loss? But what level of anger is healthy?

Bargaining – There is no bargaining as far as I can see. It is what it is. Perhaps the only positive here is if someone agrees to get help and wear a hearing instrument their quality of life will improve.

Depression– Depression and isolation sometimes go hand in hand. In a current video I did for the Cochlear Americas, www.cochlear.com I stated that hearing loss is feeling like you are the only one in the room, even though there are others who are speaking that you cannot hear. It’s like going from a vibrant world of color to a world that is black and white with no colorful hues.

Acceptance– On a personal note, I have been involved with the Hearing Loss Association of America www.hearingloss.org and other organizations for over 25 years. As an advocate, it has helped me feel there are solutions out there for all of us. But I must admit, it was difficult for me when I finally crossed the threshold to total deafness. I already had one cochlear implant since 2005. I needed a second implant in 2015, but I was resistant to admitting that I am no longer a woman with a mild, moderate, severe or profound hearing loss, —I am a deaf woman! In denying this status, I was back to step one, denial. In a conversation with someone who had already been implanted bilaterally, she gave me a little tough love and told me to accept myself as a deaf woman. At first I felt she overstepped her place. But months later after receiving my second implant, I thanked her. Her response was “Welcome.” That is, welcome to accepting myself for who I am. Not being in denial that I needed a little more help, and yes deaf when not wearing my implants.

Only in the past decade or two has society acknowledged that there are unacknowledged forms of grief. Some examples might include the following:

The grief one feels when a former partner dies, even though they divorced years ago
Respecting the right of a gay partner to have a religious service
Honoring the death of someone who has died from HIV/AIDs
The grief of a miscarriage
The death of a child at birth
Experiencing infertility
Emotions felt after an abortion
The loss of a beloved pet
Suicide

When I was in graduate school, I had the honor of taking a couple of classes with the esteemed Dr. Kenneth J. Doka (www.DrKenDoka.com). Dr. Doka is a professor at The College of New Rochelle and Senior Consultant at the Hospice Foundation of America https://hospicefoundation.org, a prolific author and a keynote speaker throughout the world.   In class, Dr. Doka spoke about disenfranchised grief, a topic which he has lectured on, written journal articles and the topic of at least one of his books, Disenfranchised grief: Recognizing hidden sorrow.  According to www.cruse.org.uk, some of the statements Dr. Doka has made on this topic are as follows:

Worden’s formulation – change=Loss=Grief

A loss that cannot be socially sanctioned

In an interview on www.psychotherapy.net, Dr. Doka explains, “Disenfranchised grief refers to losses that people have that aren’t always acknowledged or validated or recognized by others. You can’t publicly mourn those, receive social support or openly acknowledge these losses…”

Disenfranchised grief seems relevant to the experience of those who suffer from a hearing loss that progresses over time. After all, it is the loss of one of our senses. It is the loss of life as we once knew it. The ability to keep up with conversation and chime in at family gatherings and dinner out with friends. The ability to have a telephone conversation without the stress of missing big chunks. To experience the rudeness sometimes present in our daily lives by those who don’t have the patience to repeat or rephrase. Finally, , –to acknowledge that we have crossed that threshold to total deafness and be ready to accept ourselves and our new life in this mode.

There are some who may be dismissive of the profound loss this is. Some will even minimize the feelings of loss by telling the person with hearing loss something really stupid like at least you’re not blind. Comments like that do not take away what is felt in someone’s heart and the pain they have endured, but it’s not uncommon to get this response.

In the final analysis, it is this self acceptance and willingness to grow in our new identity that allows us to live a full life rather than to be “stuck” in any of the stages of grief.  Also, we need to educate health professionals to understand that hearing loss is a loss that can affect our emotional, psychological, social and physical well being.  Wellness involves anything that affects our homeostasis. Part of this wellness is the acceptance of the need for hearing aids, cochlear implants, assistive devices and accessories and any other device or assistance that will enable us to improve our quality of life.

Father’s Day, — from Francavilla, Italy to New Rochelle, NY

If anyone ever asked someone what they remember most about my father, they would probably say his love for his garden. From late March he would be digging up the soil on those balmy spring days to late October when his flower garden displayed the last show of summer and there were a few plants that survived before the first frost. His garden was his first love.

There’s so much I remember about my father. I adored him growing up. A father is a girl’s first love, and his attitude and example sets a tone for what she should expect from a man in the future. My father was strict. He had five daughters and two sons, and he was protective of us.

He had great expectations from any guy that dated us. They had to pick us up at the house, speak with respect and show they were deserving of releasing his daughter to this stranger for the night, entrusting him in his care. They had to meet him. If he felt the potential date was someone he didn’t want his daughter out with, he would go in the kitchen and consult my mother about it. He was usually spot on.

In the early days, he was a shoemaker with a store on Mechanic Street in downtown New Rochelle. I remember him putting taps on our shoes when the heals wore down. In the 1960s, wearing taps made you cool. Later on when the shoemaker business became obsolete, he went to work in a factory. He worked long hours, his hands were always chapped and he arrived home with the scent of machine oil on his clothes. He wore khaki pants and flannel shirts and put his kids first.

There are random things I remember about my father. I remember him rocking me in his lap and singing an Italian lullaby to me. I remember him trying to teach me to tie my shoes and becoming frustrated because his left-handed daughter was not good at reversing it. I remember doing homework and my pencil point breaking, and him pulling out a pocket knife and shaving it down to get a point. I remember him giving me an old silver dollar on every birthday, and signing the card, “from your papa.” I remember the way he looked at me when he saw me in my prom gown and my wedding dress. I remember him handling me a frayed prayer card he carried across the Atlantic Ocean in his pocket on his way to the United States  when I was in my forties and first went deaf in my left ear. He told me to always have faith. I remember how he came and kneeled next to me at my husband’s wake and the consoling words he offered.  Although he wasn’t someone who talked on the phone, I remember he called me frequently when my husband died just to ask me, “Mary are you alright?” And I remember the look on his face when he took his last breath after a long struggle with Parkinson’s Disease.

Most of what we knew about him was about his life once he reached the United States. I never saw any pictures of him as a child or adolescent. But who was he as a little boy? A young man? I knew his mother raised him and he always spoke fondly of the people in Francavilla who helped shape his values. Did his mother sing him that Italian lullaby when he was a toddler? When he became a young man, did he fall in love? Did a girl break his heart? Did he have dreams about the future? Did it take courage for him to leave his homeland and come to America at 19 years old, never to return except for a few visits many years later?

That was “my papa.”   Happy Father’s Day to all the wonderful dads out there living and those who have passed. And God bless all the moms who assumed both roles.

My Deaf Mother, My Deaf Self: Shame and Hearing Loss

Synonyms  (shame) 1.  embarrassment, mortification, humiliation, chagrin… (http://www.dictionary.com)

Growing up, every morning at the crack of dawn my father would walk up the street and get a copy of The New York Daily News and The New York Mirror. Often, he would cut out tiny advertisements in the back of the newspapers showing hearing devices that promised to be the smallest and cheapest device on the market.  As they shared their morning coffee and toast, my father would gently suggest my mother could benefit from one of these devices.   She would assert she heard just fine, and that would be the end of story. But my father’s frustration increased over the years as my mother’s hearing loss went from mild to moderate and finally severe in her last years of life.

There were lighter moments too though. We were a family of seven children.  During our teen years,  one night one of my brothers came home after a tough night and dramatically and with intended humor announced he was going to kill himself. My mother’s response was, “Well you can always have a ham sandwich.” I remember each of us looking at each other and then breaking out into wild laughter.  She was a good sport and laughed with us.  She knew there was no malice intended.  We never did ask my mother what she thought she heard, but that joke has been circulating at our family gatherings for years.

As a small child, I often thought my mother was indifferent. Not understanding the complexities of hearing loss, I thought she was ignoring me at times when I spoke to her. I can remember cupping her chin and turning her face towards to me and saying, “Mommy I’m talking to you!” But hearing loss was a taboo subject that she did not feel comfortable talking about. She came from a generation that equated hearing loss or any disability as being deficient.

In grade school, the school nurse sent home a notice explaining a hearing loss was detected during my annual screening. This test repeatedly indicated something was going on. My mother’s response was that I seemed to be doing well in school, so just leave it alone.

In the early years of grammar school, I was seated in the front center practically eyeballing the teacher. This was the only accommodation in those days. I did know that when the teacher faced the blackboard, I could not make out what she was saying. I also knew that if she spoke quickly giving verbal directions, I had to either ask the person next to me what she said or glance at their notes to see what page she was on. I dreaded assembling in the auditorium for special events as I could never make out what was being said from the stage. If it was a documentary film, I hoped we wouldn’t be tested on it. But somehow, I was a good student and even played the clarinet. Somehow, I’ve always been able to play music by ear, and even earned the honor of first-seat clarinet in the All-City band at the end of sixth grade.  But my talents were not nearly as amazing as Nyle DeMarco’s and I don’t think Dancing With The Stars is ready to contact me.

By high school, in shorthand and transcription class, it first really became evident to me that I was missing significant portions of what our instructor was saying as he paced around on the hardwood floor speaking with a strong Bostonian accent.

By the time I went out to work, I was learning how to successfully hide my hearing loss. When starting a new job, I would study the organization’s directory and memorize names, departments and extensions. I knew I was having trouble on the phone, and when someone called I was playing “fill in the blanks.” I learned pretty well how to conceal my hearing loss. Or did I?

Now married and the mother with two children, I started noticing that my five-year-old daughter started cupping my chin and telling me, “Mommy I’m talking to you.” That’s when I went for my first hearing aid at the age of 32. My mother’s response was, “Why did you do that? Now people will perceive you as deaf.”  This was not out of unkindness.  It was to her a survival mechanism.

I was learning the shame game very well. I would wear my hair over my hearing aid to conceal it. I would not wear it on special occasions and nod my head and pretend I understood what was going on. It was something that wasn’t discussed on the outside. Only my husband and children knew the pain I really felt.  Perhaps people felt that was good manners.  But I was struggling to hear in groups with family and friends. So I tuned out for over ten years, until I joined the Hearing Loss Association of America www.hearingloss.org,  formerly known as Self Help for Hard of Hearing People, Inc. Here, I found people who shared their trials and triumphs and I could finally admit to being a woman who was slowly going deaf.

Sometimes I try to figure out why my mother felt so much shame for her hearing loss. Growing up losing both parents by the time she was 12 years old, growing up with the poverty and despair of the depression era, and navigating the course of her own survival at such a young age may have been just too much for her to bear. It wasn’t until years later when I became a mother myself that I understood why my mother denied my hearing loss. I hoped and prayed my children would not inherit my poor hearing. If they had, then they would have to go through what I have been through. That would have broken my heart.  I’m sure my hearing loss broke her heart too.

Years later, I went to a therapist to come to terms with some losses in my life. By then, I had lost both parents, a husband, a job and as much self esteem as I could bear.  One day as I was sobbing in his office he asked me, “Why is it that you can talk about any of the losses in your life, but when you talk about your hearing loss, you lose it?” He continued, “You worked your way through college and have had your share of honors.  But regardless of all that you have achieved, you have these feelings of “not good enough.” He repeated, “Not good enough.”  Did I see myself as damaged goods? Different? Did I feel the sting of shame? Yes.

Getting back to my father, six years ago when he was at the end stages of Parkinson’s Disease, I went to visit him at the nursing home one night after work. A previous stroke had left him weakened, and especially for someone with a hearing loss, I struggled to hear his faint voice. Armed with an FM system to assist me, I listened carefully as he spoke. He leaned towards me and said, “I never knew what you went through until this happened to me.” I knew what he was saying. He was struggling to communicate. He wanted me to know he understood. Coming from a generation that did not talk about feelings, his words touched me. But the look on his face spoke volumes. He wanted me to know that he was feeling the sting of shame, and was sad for me to have gone through the same.

A few years later when I saw my mother’s hearing loss was getting worse, when visiting her, I would use simple phrases in American Sign Language to strengthen our conversations. For instance I would say, “How do you feel?” Or, “Do you feel sick?” Or I would simply tell her I loved her. At first she was resistant to it. She genuinely seemed perplexed as to why I was enunciating my words and speaking.  After all, she wasn’t deaf, right? But when she had another stroke and ended up in a nursing home with a profound hearing loss and sometimes unable to speak, she would nod her head yes or no when I signed to her. I would like to believe she finally felt no shame in doing whatever she had to do to come to terms with her hearing loss. I would also like to believe it gave us a little more time to still converse in simple terms.

I found out an uncle in California and one who lived here in the east had a hearing loss.  I also found out my great-grandfather on my mother’s side was deaf, and that I have a deaf cousin in Italy.

I always knew my parents were proud of me.  But it saddened me that that generation struggled with coming to terms with disability and differences.

So what can we do to come to terms with our hearing loss and stop feeling shame?  Self acceptance.  Find a little humor in our own human mistakes.  Don’t let anyone else define us.  Be our own advocate.  And remember, hearing loss is just one of the things that makes us who we are.

Let’s hope that with each future generation there  is more inclusiveness and understanding so the sting of shame will be a thing of the past.

Copyright © Mary Grace Whalen 2016. All Rights Reserved. Portions of this article are from my upcoming book, Living In The Color Magenta.

 

 

 

Getting From “Hear” To There

It is now five months since I have received my second cochlear implant.  For many of us, progress is evident when we once again hear the sounds around us that we once heard.  Many of those sounds are of nature, and what better season is there to celebrate the gift of sound than spring?

Here in New York, we had several unseasonable balmy days in the month of March.  Once such morning, I opened my terrace door and to the sound of a symphony of birds singing.  Although I live in a business district, the back of my complex borders with a nature preserve.  My first thought was that many of the migrating birds must have already flown back.  It seemed there must be a greater concentration of birds than last spring.  Then it dawned on me, — bilaterally, I am hearing their sweet songs in greater detail.

Then we had several windy days that followed.  Hearing the wind whistling while treetops swayed and my windows rattled made me feel like I was once again connected to a universe that announces it’s presence with the eerie sound of the wind.

One of the most profound moments was on one of those balmy nights in March as I was sitting at my computer writing.  Suddenly, lightening flashed through the sky and a quaking thunder crackled and I jumped out of my chair.  I looked out the window and listened again for the next round, then listened to the rain fiercely hitting my window panes.  I tried to remember the last time I heard the dramatic sounds of a thunder storm which always has made me feel a strong connection to the universe we live in.  Lights, camera, action!  I love it!

Some sounds are not as dramatic, but they make us feel more connected to the world we live in.  I live in a mid-rise building, and although I am living here six years, this is the first time I am really hearing what is going on around me.  When I am home, I can hear my neighbor next door talking on the phone from one room.  I can also hear when children return from school around 3:30 and walk the halls and talk to their friends.  I can hear the woman across the hall place her key in her door at about 6:45 p.m. when she returns from work.  I can hear the neighbor below me keeps her TV volume a bit high.  I can hear the funny noises in my apartment when the heat comes up.  I can hear when someone shuts their windows or terrace door.  I can hear the guy on the third floor in the elevator and when he talks to me in the complex gym, although he mumbles.

For a decade or more, I have watched TV with the sound off and just captions.  With the new bluetooth and mini-mike devices  that came with my Cochlear brand processor, I am watching TV and now able to hear voices of newscasters and those of my favorite shows.  I go to the gym and listen to oldies while I pick up my stride and aim to do my 10,000 steps armed with my Fitbit.  I can go to a Broadway show and sit in a seat as close to the front as possible and plug my mini mike into the assistive device and hear the show.  I can hear very, very well with the bluetooth phone clip paired with both processors, something I couldn’t do before.

Most of all, I am now able to have a decent conversation with my two-year-old grandson.  He tells me about his swimming lessons, nursery school, we sing songs, play games, and I feel he is getting to know me even better.  Somehow, he seems to understand about my implant.  Once day he pointed to my implant and said, “That helps you hear?”  The insight of a child.

As a Cochlear Americas volunteer, this past fall I was honored to be part of two videos telling my story as a recipient.  At the time, I was anticipating getting my second implant.  The first video shows several people of all ages around the world reciting the Cochlear mantra.  It is a heart-warming video that celebrates the gift of sound.  If you would care to see the video, go to www.cochlear.com.  Quickly “x” out the screen that blocks the pictures of the recipients and click on the first video.

The second video (and blog) tells my story about my lifelong dream to learn to swim, and how I am living that dream today because of the Aqua Plus device.  Go to http://thewire.cochlearamericas.com , scroll down to April 5, 2016 and view the video and read my story.

Later this year, I am hoping to publish my book entitled Living In The Color Magenta. I will keep you posted.

In the meantime, although the progress for my newly-implanted ear is already up to the first implant I received 11 years ago, I will continue my rehabilitation and listening exercises for a couple of hours each day.  Worth mentioning is the need for all of us to receive aural rehabilitation.  The rewards are vast.  Happy hearing!