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… (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!

 

Why Marlee Matlin Matters

It’s been barely a week since Super Bowl 50.  The Deaf/deaf community eagerly anticipated the event with Lady Gaga clutching her heart and singing beautifully  while Marlee Matlin performed the American Sign Language (ASL) version of the U.S. National Anthem expressively.  The only problem was that although those in the stadium could see Marlee Matlin signing on the monitor, she was not viewable for those watching the game at home except for a momentary flash.

Many in the Deaf community interpreted this as a sign of disrespect.  Even though Marlee Matlin wasn’t visible to home viewers, the program was captioned.  But social media is filled with comments from people who felt showing  her on the monitor to home viewers was about so much more than accessibility.

Marlee Matlin was the first person from the Deaf community to ever win an Academy Award.  I don’t think it is unfair to say many people in the mainstreamed hearing community have little relatable experience with persons who rely on ASL to communicate.  The first thing people will tell you is they remember her amazing performance in “Children Of A Lesser God.”  So she often symbolizes what others perceive as a relatable example of a Deaf person.

If you look at every minority in the United States, persons with disabilities is the last frontier to be acknowledged.  In this presidential election year, candidates are vying for the support of women, people of color, gays and the Latino population, but who is even talking about being the candidate for persons with disabilities?  The Deaf are often invisible along with others with what we know as persons with disabilities.

Marlee Matlin’s presence at Super Bowl 50 is a reminder that people in the Deaf community exist.  They watch football.  They care if they are acknowledged as a valid member of our society with a right to a life of dignity.  So showing her face signing to people across the country and around the world says yes, we do exist!  We are here watching the game with you!

Aside from being an actor, Marlee Matlin has shown the world she is very human.  She has acknowledged her need to check into the Betty Ford clinic for substance abuse.  She has implied she was abused physically in a relationship and she implied she was sexually abused as a child.

If you look at the clips from her acceptance speech for her Academy Award, she was at 21 years old the youngest to ever receive the award.  To me, over the years she has developed into a more confident woman who appears very comfortable in her own skin, and part of her beauty is her expressiveness in signing.

On her website, www.marleematlin.com, here is what she says about ASL:

“The opportunity to communicate in sign language, one of the most beautiful languages in the world, is an advantage that deaf people enjoy. It’s a language that combines several elements at once with a simple hand movement and facial expression: meaning, affect, time and duration. It’s just so beautiful that printed or spoken words can’t begin to describe it.”
– Marlee

She is the author of several books including her 2009 memoir entitled “I’ll Scream Later” which is named after her response to learning she received an Academy Award while recuperating in the Betty Ford Center.

Marlee Matlin is married to a police officer and has four children.  Her down-to-earth approach, and her story is one of the struggles as a human being who knows the plight of the Deaf community and turned it into empowerment.  Her face on the monitor reminds viewers the Deaf community exists rather than invisible.  And a presence and voice in our society is what many Deaf individuals feel is needed.  

mw

The Truth About Hearing Loss And The Workplace

Well, it’s complicated.  In the last decade I was fortunate enough to work in an environment that was welcoming and inclusive.  I taught college-level English classes and was lucky enough to be surrounded by understanding people.  But it hasn’t always been that way.  Ask anyone with a hearing loss and they will tell you there are struggles. As our hearing loss accelerates more and more, frustrations on both sides tends to heighten unless there is an understanding of how we sometimes function differently than the masses.

There are struggles to assert we are capable and worthy of employment.  Struggles to assert we are committed to excellence.  Struggles that dictate we have to jump through hoops and go the extra mile to prove we are equal.  Struggles to understand why some people don’t understand diversity and find differences annoying or even subject matter for jokes.

Some of those struggles are because of mindsets created long ago about persons with hearing loss.  Some of those struggles are because those who have varying levels of deafness do not advocate enough for themselves.  Sometimes the offenders are those who are educated, in an authoritative role or even in do-good roles that require an understanding and compassion for the human condition.  Textbooks can teach theory, but practice is the true litmus test.

We as persons with hearing loss must teach our employers what our special needs are.  Often, we do not.  This is because we are often afraid if we ask for special accommodations, even as simple as written instructions or facing us when someone speaks, we will be perceived as a even more deaf and struggling to do our job.  The biggest mistake we make,and we all do it, is bluff.  We pretend we heard a directive when we may have heard only part of it or none of it.  We are often too humiliated to ask again and again what was said.

Now here’s the thing…even though The Americans with Disabilities was signed in 1990, there are still things that happen in the workplace that violate the rights of those with hearing loss.  Like any other “ism,” there will always be people in our society that use their power in unfair and negative ways.  When a person with hearing loss complains of mistreatment, what happens?

In her essay entitled “The Ways We Lie,” Stephanie Ericsson explains there are many ways we lie from little white lies to lies that are damaging and destructive.  Here are some of the ways this essay can be applied to the deceit that sometimes takes place in the workplace regarding those with hearing loss.

“IGNORING THE PLAIN FACTS

“In the ’60s, the Catholic Church in Massachusetts began hearing complaints that Father James Porter was sexually molesting children.  Rather than relieving him of his duties, the ecclesiastical authorities simply moved him from one parish to another between 1960 and 1967, actually providing him with a fresh supply of unsuspecting families and innocent children to abuse….” (Ericsson)

How does this apply to the workplace?  There are complaints filed in companies that have “open door” policies any day of the year.  How often does the company admit to wrongdoing?  Whether it’s disability, racism, sexism, homophobia or any other prejudice, companies are just not going to risk admitting to wrongdoing and have a suit on their hands.

“DEFLECTING

When you have no basis for an argument, abuse the plaintiff. –Cicero.

Some of the most skilled deflectors are passive-aggressive people who, when accused of inappropriate behavior, refuse to respond to the accusations.  This you-don’t-exist stance infuriates the accuser, who understandably, screams something obscene out of frustration.  The trap is sprung and the act of deflection successful, because now the passive-agressive person can indignantly say, “who can talk to someone as unreasonable as you?”  The real issue is forgotten and the sins of the original victim become the focus.  Feeling guilty of name-calling, the victim is fully tamed and crawls into a hole, ashamed. I have watched this fighting technique work thousands of times in disputes between men and women, and what I’ve learned is that the real culprit is not necessarily the one who swears the loudest.” (Ericsson)

I know a few people who have actually been so exasperated they threw the F-bomb at the offending employer after being continually verbally abused.  Who could blame them?

“STEREOTYPES AND CLICHES

Where opinion does not exist, the status quo becomes stereotyped and  all originality is discouraged. –Bertrand Russell

…They take a single tree and make it a landscape.  They destroy curiosity.  They close minds and separate people.  …Fat people, ugly people, beautiful people, old people, large-breasted women, short men, the mentally ill, and the homeless all could tell you how much more they are like us than we want to think…” (Ericsson)

I remember once many years ago and before I was profoundly deaf, someone asked for directions to my office. He was told to go upstairs, get off the elevator on the second floor and speak to the woman with the hearing aid.  That was a revelation for me because it never occurred to me that someone would define me by my hearing loss.  But what does someone see when they see us? Do they draw a picture in their mind of who we are before they know us?

“DISMISSAL

Dismissal is perhaps the slipperiest of all lies.  Dismissing feelings, perceptions, or even the raw facts of a situation ranks as a kind of lie that can do as much damage to a person as any other kind of lie.” (Ericsson)

When an employer is dismissive of a complaint someone makes in the workplace they are being deemed irrelevant, invisible and it only affirms to the offended party that they are marginalized in our society without a right to a voice.

So what’s the answer here?  Do we speak up or keep our mouth shut if we are not being treated fairly or if we are experiencing abuse?  There is no easy answer.  But here are some of my personal thoughts.  

Once, many years ago when I first started losing my hearing, I was walking into the cafeteria for a coffee break and I overheard a co-worker say to a group of women including my boss, “How does she know when her phone rings if she can’t hear?” She thought it was hilarious, but it was my first real experience seeing how mean-spirited some people can be.

Years later, I was involved in event planning.  I noticed my boss didn’t fill me in on the planning of some upcoming events, and I asked her why.  Her response was, “Because you can’t hear and I would have to shout, and then I would get laryngitis.”  I had worked there for five years, long hours skipping lunch and gone for two years without a sick day, –worked events at the Waldorf-Astoria and The Plaza hotel for as many as 1,200 people including well-known celebrities, and I did it well.  I was so hurt by her bluntness that day I walked out feeling so humiliated I didn’t know if I ever wanted to come back.  What hurt most was this was an acknowledgement of my progressive hearing loss and how it was affecting me in the workplace.  Two days later I came in and had a long talk with her.  She not only apologized, but she made an effort to try to understand the dynamics of hearing loss.  That was 30 years ago, and we stayed friends until she died recently.

I haven’t always been an advocate for myself.  Honestly, it’s sometimes a no-win situation as many will tell you.  It’s very difficult to be an advocate and not get emotional about the struggles we face every day.  Organizations such as Hearing Loss Association of America helps  members  deal with hearing loss in the workplace through their meetings, convention seminars and written materials. (www.hearingloss.org)

Also, books such as Living Better with Hearing Loss, A Guide To Health, Happiness, Love, Sex, Work, Friends…and Hearing Aids by Katherine Bouton are helpful. Katherine Bouton also has a blog hearingbetterwithhearingloss.wordpress.com.

mw

 

Here’s To A New Season…

IMG9529912015-01-21

Post surgery and on my birthday two years ago.  I’m looking forward to special chats with my grandson.

 

So here it is 11 days post cochlear implantation surgery in my left ear.   My right ear was implanted in 2005 and has been my only source of intelligible sound for a few years now.

What a lot of people don’t realize is that when the device is off, the recipient defaults to a status of profoundly deaf.  It’s really amazing to think that this tiny device implanted under the skull can reconnect someone to the world around them.  I thought about that a lot the week before my surgery and found myself feeling a tremendous amount of gratitude and a little weepy.  That my surgeon told me he thinks I will probably even benefit more from this surgery than the first one gives me the same goosebumps I felt when I received what Santa promised to deliver on Christmas morning as a child.

The days preceding surgery I spent time with my sister Stephanie in California visiting family.  It was a special time with lunches at my nephew’s outdoor picnic table, lots of laughs with her grandson Antonio, a visit to Hollywood, time catching up with a cousin I haven’t seen since I was about five years old and taking some time to discover L.A.  I also enjoyed sitting on the porch and watching the monarch butterflies, the hummingbirds and a California fall day at its best.  But one of the most profound moments for me was walking down the street with my sister and her reaching for my hand, just like we did back in the days when we walked to Washington Elementary School.  Sometimes the greatest messages take place in silence.

Before long, it was time for us to take our red-eye flight back east, and the following day I packed another bag to stay over my daughter Melissa’s house in NYC the night before surgery.  An amazing professional chef, she asked me what I would like to eat the night before surgery.  I told her something simple.

After  Melissa, Lou and the baby greeted me at the door with smooches, I sat down at her dining room table, and we enjoyed a pasta dish, no kidding, — in the shape of tiny ears.  It was a dish that contained shrimp and escarole, one of my favorite vegetables.  My family’s presence was calming.  Somehow even the dog seemed to sense something big was about to happen.

The next morning we took a cab uptown to NYU Medical Center Ambulatory Care.  Traffic was horrendous.   But once we got there, we met my daughter Valerie and all three of us waited for the nurse to call me in.  My daughter Valerie reminded me if I had trouble communicating,  just call them in.

So the nurse asked me if I was nervous.  Nope.  She asked me all those questions they repeat over and over to make sure they have the right person.  She asked if it was my left ear they were operating on.  She asked why I was here today.  The correct answer was to have a cochlear implant, but I couldn’t help throwing in there that I was anxious to have a purpose for that ear besides hanging an earring.

The nurse asked me again if I was nervous.  Nope.  At that point I just told her give me the juice and send me to that happy place and wake me when it’s over.  That surprised my kids because I don’t like to take medication.  But they broke out in laughter.

The nurse walked me down the hall and instructed me to go into Room 4 with her.  Ah, I get Suite 4 I joked.  The celebration was about to take place.  Everyone seemed in good spirits as I was told to take a deep breath and I said a silent prayer looking up at the lights,  asking my deceased husband to ask God to watch over me.

Next thing I knew, I woke up with a thick gauze “headband” bandage across my head.  I looked like I just completed a tennis match.  At first I thought I was back in L.A., but soon realized the operation was over.  My first thought was, “That’s all?”  I felt very little pain.  I had very little swelling.  I didn’t have the vertigo I had the first time.  Very little. I was shooting questions to my kids and the doctor.  I asked my kids to take a picture of me to remember the day.

I went back to my daughter Melissa’s house and shared a meal again with family.  Greek chicken soup and a lentil dish.  Melissa insisted on spoon feeding me.  What a reversed role from the past. But it was nice.  I slept in a chair (for comfort) and Liffey, their dog, stayed at my feet the whole time.  If I moved an inch, he moved an inch closer.

Valerie came home with me for 2 days and nurtured me and watched I didn’t try to do anything I wasn’t suppose to do.  I snore like a locomotive, but she never complained.  When she left, I found a card on the table expressing how proud she is of me, and letting me know we will always find a way to communicate.

My sister Stephanie came for a day and then Lucille.  Friends called to ask if I need anything.  I really can’t say I’ve had a hard time, and if this gives anyone courage to go through with this, that makes me happy.

My device will be turned on December 2, the same day the tree will be lit at Rockefeller Center.  Can’t wait to play with all those toys Cochlear Corporation gives their recipients to help hear on the phone, in restaurants and other settings.

The tree has always had significance to me because when I was a child, my mother would put all 7 of her children on the train to see the tree.  Then we would go to St. Patrick’s Cathedral and light a candle, sometimes go see the Rockettes at Radio City and get a sandwich at one of those Horn and Hardart automats.  Each of us would get one of those little plastic souvenirs you shake and it appears to snow on a tiny village.  That was the beginning of the season for us.

So on December 2  after my appointment I will stay in the City for a bit and enjoy all the sounds and sights of the season. I just may go to St. Patrick’s Cathedral and light a candle in remembrance of my mother and how she made the season magical, — and gratitude to my family and friends for always being there for me.

 

 

 

 

 

 

Dr. Oliver Sacks: Doctor, Writer, Artist and Amazing Human Being

Dementia.  Parkinson’s Disease. Tourette syndrome.   The world of the deaf.  Vision and perceptions.  Autism.  Covering conditions from cradle to grave, in his case studies Dr. Sacks put a face on the condition.  His examples helped us to understand ourselves and those we know who may be afflicted with such conditions.  He cared deeply about all of us.  Much like Elisabeth Kübler-Ross http://www.ekrfoundation.org, rather than simply quoting peer-reviewed journal studies, his books remind us of the reality of having real people in our lives who suffer from these conditions.

Dr. Sacks passed away this past week at the age of 82.   He was a neurologist at NYU School of Medicine.  He has always been one of those people I would have loved to have 10 minutes with to chat and pick his brain.  In addition to his brilliant career as a doctor and writer, there was something very human about Dr. Sacks, and when he wrote it was clearly expressed in his words. The New York Times has referred to Dr. Sacks as “the poet laureate of medicine.”

Be sure to read Sabbath,  http://(www.nytimes.com/2015/…/oliver-sacks-sabbath.htmlone of the last articles The New York Times published before his death. In this article, he shares his early experiences with his deeply-religious family.  He also talks about the pain he felt at an early age revealing his homosexuality to his parents and his mother’s rejection.  In the end, Sabbath is a celebration of a new day, and a time of peace at the end of his lifelong journey.

Also be sure to visit his website:  http://www.oliversacks.com and click on his blog and  read All Hands on Board and click on the link to the four-minute film about “Patrick Otema, a fifteen-year-old boy from Uganda that had never had a conversation with anyone in his life.  Despite my own battle with deafness over the last 30 years, I cannot imagine the isolation this young man has felt in his 15 years.  No music.  No laughter.  No connections.

This blog is too short to include all the many contributions Dr. Oliver Sacks has made to society.  His website contains a wealth of information about the man, his work and how he impacted people around the globe.

Obviously, Dr. Sacks had his own struggles in the course of his lifetime, but he placed his attention on others and leaving the world a better place.  In the article Sabbath, Dr. Sacks concluded:

“And now, weak, short of breath, my once-firm muscles melted away by cancer, I find my thoughts, increasingly, not on the supernatural or spiritual, but on what is meant by living a good and worthwhile life — achieving a sense of peace within oneself. I find my thoughts drifting to the Sabbath, the day of rest, the seventh day of the week, and perhaps the seventh day of one’s life as well, when one can feel that one’s work is done, and one may, in good conscience, rest.” (NY Times, August 14, 2015)

Nicely done Dr. Sacks.  Wherever you are in the universe,  thank you from “us.”

Let There Be Sound!!!

IMG_2790

It was a muggy, humid morning in July, and I walked over to NYU’s Cochlear Implant Center from Grand Central Station as the people in the City rushed with Starbuck’s containers and attaché cases to arrive at work on time. This would be the day I would be evaluated for a second cochlear implant. I wondered, am I a borderline candidate? Knowing I have some hearing left in that ear, I also wondered if I would be denied and would be forced to continue to struggle with my everyday communications. I wondered if I was doing the right thing to move forward with this as there is a good chance any residual hearing would be lost during the operation.

I sat quietly waiting for my audiologist to call me in.   A middle-aged man who was seated next to me seemed to get a bit emotional looking at a small child who evidently recently received a cochlear implant. He sighed and commented to me that if it is hard for us, imagine how hard it is for a child to live in a world of silence.

This man apparently was going through a rough time. He struck up a conversation with me explaining that he had recently been implanted, and this loss was particularly difficult for him because he is a musician. He further explained that he didn’t know anyone else with a cochlear implant, and he was feeling very isolated going through this alone. He asked, “Does anyone know what we go through as we transition to different levels of hearing loss?” It was evident that he was in the early stages of the cochlear implant rehabilitation process, but he seemed to be doing remarkably well from where I was sitting. That’s when my audiologist arrived in the waiting room and called me in.

The two-hour hearing tests are not new to me. I have one cochlear implant, and I was being tested for a second implant. The nationally-acclaimed center where I was tested runs a battery of tests with the processor on, off, hearing aid on and off together and separately.

So here I was in the testing chamber, isolated from any external noise. My audiologist was about to test my left ear, the one that is being tested for implantation. At that moment, I had many fears. What if I AM border line and have to continue struggling to hear store clerks, public announcements, religious sermons and simple conversation? How much hearing do I have left in that ear? I was soon to find out.

On single words, I could hear “noise” but was unable to make out anything intelligible. When it came to full sentences, I sometimes could make out a word or two in the sentence. The most profound moment for me was when I was asked to raise my hand when I heard two beeps. Mostly, it was long gaps of silence for me.

Did I really just miss long stretches of sound in that test? Am I really THAT deaf in my left ear? We never know what we aren’t hearing. Suddenly and unexpectedly I felt a tear run down my cheek in the silence of the chamber. All I could hear was the words of the man in the waiting room vehemently pleading to me, “Does anyone know what this feels like?” I thought of my mother who lived in an era of shame for any disability and denied her own hearing loss for decades. She refused to wear a hearing aid until she was 88 years old. I wished I could have hugged her.

The verdict was in. I am a candidate. That’s good news, right? I have no natural and usable hearing left in either ear. Do I accept myself as a profoundly deaf woman? I bit my lip and swallowed hard. If the audiologist saw my eyes welling up, she was polite enough to pretend she didn’t notice.  While there is a sense of mourning we feel whenever we lose any part of a vital sense, there is a feeling of celebration knowing I am lucky enough to live in a time when there are solutions. Helen Keller wasn’t. Neither was Thomas Edison or Beethoven.

Ten years ago, I lamented to a friend that after receiving my first cochlear implant that voices sounded like Darth Vader. Having received bilateral implants himself years before, he told me “Be patient. The next time you see me you will hear better, and the time after that even better.” Blair was a no-nonsense guy, and if he made a claim, you knew he meant it.  What he told me was true. Vivaldi’s Four Seasons is magnificent. So is listening to Satchmo with my right ear. I never did see my friend again as he and his wife died in a tragic accident, but I never forgot his words of encouragement. I hoped that day as I shared my friend’s words with the man in the waiting room maybe someday he will pass those words on to someone else.

So my struggle is almost over. The simple tasks everyone takes for granted every day will no longer be a struggle.  I’m grateful to be alive at such a time that I am not forced to sit in the deafening halt of silence that feels very much like death, but one that is colorful and connects us to people and the world around us.