Oh, the places technology has​ allowed us to go!

 

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Back in 1989, I became involved with the Westchester Chapter of the Hearing Loss Association of America (www.hearingloss.org). I remember my first meeting. It was then that I discovered that there was life beyond my old analog hearing aids. Soon,  I became familiar with Assistive Listening Devices (ALDs) and flashing devices.

New technology has given all of us an opportunity to function better and live fuller lives.  Over the years, the technology has only gotten better.

Early Devices: Pocketalker, TTY/TDDs and Closed Captioning Devices

My first joy was in trying out the Pocketalker device. If you aren’t familiar with Pocketalker, it is a small device the size of a pack of cards with a microphone and a cord of varying sizes. It can be used for one-on-one conversations, or it can be used extended to clip to a TV or other sound source.

Then there was the day I went to the home of our former chapter president. She was getting a new closed captioning device, and she offered me the one she had been using only suggesting that I make a small donation to our local chapter.  The day I brought the device home and hooked it up to my television, my family and I watched words dance across the screen to the sound of high-pitched tiny beeps. The problem with the early devices was the captions were often garbled.  Also, many shows were not captioned.

Then there was my first TTY/TDD. I bought this device when my hearing loss became more severe. AMAZING was my first thought!  Once again, I could communicate by phone. After that, I got flashing and vibrating devices to alert me to the doorbell, the telephone and to wake me up in the morning.  These devices helped me to function and remain part of the workforce.

A lot has changed since those days. Now that I am profoundly deaf and I wear cochlear implants, my needs have changed as well. There will be more on that in a future post. How lucky I feel to be living in a time that has so much to offer persons with varying levels of hearing loss.

Utilizing Cell Phones, Computers, Accessories, and Resources

Perhaps the most pronounced change came with the use of cell phones and computers. Here are some examples of how technology has evolved:

  • Both hearing aid and cochlear implant users can use Bluetooth-enabled phones to stream cell phone conversations and music directly into their Bluetooth-ready hearing devices. This is of particular value because many recipients are bilateral, and bilateral listening often provides for a richer experience.
  • Closed-captioning devices are no longer needed for televisions since all televisions 13 inches or larger are now required to have built-in captioning.
  • There are many captioned landline phones out there that are often free to persons with hearing loss. Companies such as CaptionCall (www.captioncallphone.com) and Captel (www.captel.com) are examples.
  • Also, companies such as InnoCaption (www.innoCaption.com), Clear Captions (www.clearcaptions.com) and Hamilton Captel offer apps for cell phones free of charge.
  • Internet newscasts are often captioned just with a click in settings.
  • Text messages are an option if the caller isn’t comfortable with their level of hearing on the phone.
  • Cochlear implant companies have developed accessories for persons with hearing loss. Some of these devices include TV devices for better listening, a personal microphone for restaurants and noisy environments and a phone device as mentioned above for conversations and music. You can visit the three major providers at www.cochlear.com, www.Advancedbionics.com, and www.medel.com.
  • Movie theaters routinely provide captioned movies. Check out www.captionfish.com.
  • In New York City, Galapro is available for captioning of Broadway shows delivered right to your phone. Check out the application for further details. Aso, don’t forget about www.TDF.org for captioned performances both on and off Broadway.
  • We are seeing more visual alerting systems in public transportation. Some subway systems such as those in New York offer assistance with loops if you turn on your t-switch. Some cabs provide t-switch amplification.

If I go back to a time when my hearing loss really impacted my life, I think of all that I missed. Decades of movies. Music. Important conversations. Still, I feel pretty lucky. Those who lived long ago never had the opportunity to hear what I got back with digital hearing aids, cochlear implants, and assistive accessories.

Going back in time: Beethoven, Mozart, Helen Keller and Thomas Edison

Think how beautiful it would have been if Beethoven had the opportunity to once again hear the music that brought so much joy to everyone else’s ears. Imagine how much easier it would have been for Thomas Edison to have had an interactive conversation with his friends Henry Ford, Harvey Firestone and John Burroughs. How special would it have been if Helen Keller had been able to have a live chat with her good friend, Mark Twain? I think of this often and feel so much gratitude for living in these extraordinary times that allow me to participate in all the sounds of life. Imagine what tomorrow will bring!

How has the technology for persons with hearing loss affected your life?

Closing Note:  Mention of any websites,  services or devices are included in this post as a courtesy and are not intended as a statement of endorsement.  

Are health professionals prepared to address the needs of aging baby boomers with hearing loss?

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Photo by Pixabay on Pexels.com

 

According to the National Institute of Deafness and Other Communication Disorders (NIDCD), 1 in 3 Americans between the ages of 65 and 74 have a hearing loss.  Beyond that population, about half of those older than 75 years of age have some difficulty with hearing.

While there are many effective solutions to hearing loss such as hearing aids, cochlear implants and assistive devices, health care professionals must always remember to treat the whole person.

For example, let’s take the number of persons with hearing loss who experience depression.  Studies often discuss the physical and psychological consequences of aging, but how often are the psychological and emotional needs of the late-deafened population discussed?  Is the person of a normal body weight? Do they have an eating disorder related to their frustration with losing their hearing?  Do they have co-dependency issues with alcohol or other substances?  Has it been addressed? Has a bout of depression been attributed to another health problem when it may be due to the isolating nature of hearing loss?

Years ago when I lost my husband I went into therapy.  I was surprised at how little the social worker knew about the consequences of hearing loss.  While she thanked me for teaching her all that she ever knew about treating someone with hearing loss, she never discussed why I was engaging in emotional eating. All this made me wonder how much training psychologists, psychiatrists and social workers receive in dealing with hearing loss.

The Struggle

Another issue is factoring in how we feel about all the changes that come along with aging with a hearing loss?   How has that affected our lives?  Do we feel less attractive wearing a hearing device?  Do we WEAR the device as much as we should?  Do we socialize less because we aren’t informed about devices or venues that can help us function in situations that we thought were inaccessible to us?  Do we feel embarrassed to tell friends we are missing what they are saying?  Are our friends and family supportive of us?  Do we feel a sense of disconnect because we have lost friends or family members at this time of life?

The Bluff

Hearing loss can be a real challenge.  Those of us with hearing loss know about the big bluff.  Someone tells us something once, then twice, then the third time we smile and pretend we are with them.  Are we in denial of our hearing loss?  Do we accept this new older late-deafened person we have become?  Has the transition from a mild hearing loss to one that impacts us profoundly affected our lifestyle or our home life? Growing older can have it’s challenges.  Have we pasted together who we were and who we are at this stage of life? Do we embrace that identity?

The Triumph

In an aging population, when we are experiencing our worst bout of hearing loss other physical or personal losses are occurring.   In a strange way, if we use this tremendous loss as a learning experience, we end up more resilient.  We must be our own advocate and seek solutions. But we can sure use a little coaching along the way.  We need more health professionals who understand the complexities of hearing loss.

How can health professionals help?

Hospitals and nursing homes are filled with an aging population of people with hearing loss.  Health professionals must learn how to communicate and treat people with hearing loss.  Signage above the bed in hospitals and voice recognition/visual devices need to be installed.  Nursing homes need to ensure patients are wearing their hearing devices, have working batteries and routine device checks.  Dentists need to wear surgical masks with a clear view to help us read their lips.  Psychologists must read up on the consequences of hearing loss in later life and remember to include their findings in treating the whole person.  Doctors must have visual/vibrating devices to help patients know when their name is called in the waiting room.  Printouts of instructions, a diagnosis and contact information should be routine.  Text and email communications are long overdue.

All of this can help to prevent misdiagnosis.  Most of all, professionals who are informed about the consequences of hearing loss help to promote a state of well being and inclusiveness for their patients. Baby boomers are change masters.  They take a problem and seek out new and innovative solutions.  The solution here is inclusiveness in healthcare.  We are long overdue for new practices. Let’s all work for change and be the master of our own journey.

 

 

 

 

 

 

Did you know that…?

In my last post, I mentioned how much I appreciated how candidly Dan Rather spoke about his own hearing loss at a book lecture.  A few weeks ago, I attended another book lecture, this time the guest speaker was Anna Quindlen.

Anna Quindlen has a way of speaking that can make anyone in the room feel like she just stopped by to chat over a cup of coffee.  She is refreshingly honest, down to earth and funny.  In person and on paper she comes across as someone who is acutely aware of the human condition.  Then there was the moment she mentioned that when she was younger she stuttered.

Writers have a wonderful opportunity to inform and enlighten others through their words.  But it doesn’t stop there.  All people who are famous are in a unique position to show  others that persons with disabilities can be found in every walk of life.  This is important because it reminds the younger members of society that sometimes barriers can be broken.

Here is a sampling of some well-known individuals with disabilities past and present who have been successful:

Hearing loss:

Thomas Edison, Bill Clinton, Stephen Colbert, Jane Lynch, Jodie Foster, Ludwig Van Beethoven, Leslie Nielson, William Shatner, Eric Clapton, Andrew Foster, Lou Ferrigno, Helen Keller and Nanette Fabray

Speech disorders:

Winston Churchill, King George VI, James Earl Jones, Marilyn Monroe, John Stossel, Tim Gunn, Joe Biden, Bruce Willis, Samuel L. Jackson, Mike Rowe, Jack Welch, Bill Walton

ADD and ADHD:

Justin Timberlake,  Jamie Oliver, Will Smith, James Carville, Michael Phelps, Paris Hilton, Jim Carrey, Ty Pennigton, Sir Richard Branson, Terry Bradshaw and Pete Rose

Vision:

Ray Charles, Andrea Bocelli, Stevie Wonder, Helen Keller, Louis Braille, John Milton, Jose’ Feliciano and Homer

Epilepsy:

Prince, Elton John,  Danny Glover, Alexander the Great, Theodore Roosevelt, Harriet Tubman, Truman Capote, Lewis Carroll, Edgar Allan Poe, Julius, Caesar, George Gershwin, Vincent van Gogh, Socrates , Charles Dickens and Michelangelo

We also know of the impact people like Stephen Hawking and Christopher Reeve have left on society.

The message here is that when there is an open discussion about famous persons and their disability, it reminds society that persons with disabilities have the potential to be major contributors in our society given the chance.  If you look at some of the talent listed here, the world has been enriched with music, art, science, literature and profound insights.

An Open Letter of Thanks to Dan Rather for Bringing Hearing Loss to the Forefront of a Discussion

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Photo by Aaron Burden on Unsplash

Dear Dan Rather,

In late January you were a guest speaker at my local Barnes & Noble store to discuss What Unites Us, a book authored by you & Elliot Kirschner (https://www.amazon.com/What-Unites-Us-Reflections-Patriotism).   The crowds arrived early, and people began to line up well before starting time.

I am a late-deafened baby boomer, but I am a bilateral cochlear implant recipient, so I can function pretty well while wearing my devices.  Due to my less-than-perfect hearing, I arrive at these events well in advance to ensure good seating.  On this particular evening, I was able to get a second-row seat in the center of the event area.  Eager and ready, I pulled out a small microphone that serves as an assistive device to supplement my cochlear devices.  Needless to say, staying connected to our world is a priority those of us who suffer from profound hearing loss need to keep up with.

As the program began, the crowds clapped and you were seated.  It took a few small adjustments to make sure the store’s microphone for the event was working optimally.  I sat in my seat feeling somewhat conspicuous pointing my personal microphone in your direction.  As you looked straight ahead, I did my best to hear the program and get the full benefit from assistive technology. But wait.  Did I spot at least one hearing aid when you turned your head?  Perhaps then, you would understand why I was pointing this tiny device in your direction.  I was trying to get the full benefit of your words.

Right before the questions from the audience began, you stated you had a confession to make.  You informed the audience that your hearing is not what it used to be, preparing them for the possibility of not hearing a question or even answering it inappropriately through no fault of your own.  Then you went on to tell the audience about Walter Cronkite who suffered from hearing loss in his lifetime.  You added a humorous story that so many of us whose hearing is not what it used to be can relate to.

But it didn’t end there.  A young man in the audience with a small child opened a discussion about race.  He said that he looked around the room and there were few people in the audience that looked like people “where he comes from.”  It was so important that the young child with him could witness your insightful response.  It was also important to me that this young child heard you speak openly about your own hearing loss, sometimes with the humor we all need to keep things in perspective.

Finally, often on social media I see young people with hearing loss or culturally Deaf individuals ask what kind of job someone with hearing loss can do.  You validated the point that persons with hearing loss can be whatever they want to be just by being present and speaking candidly.  Hearing loss is a disability, and unfortunately issues concerning persons with disabilities is an often forgotten part of discussions about diversity.

Getting back to that small child, through your words, the next generation was reminded that although change often comes slowly, an open discussion gives a voice to those of us who have felt on the outskirts of society for whatever reason.  Mr. Rather, that is something that unites us, and I thank you.

With gratitude,

Mary Grace Whalen

Dan Rather’s website is www.danrather.com  

Here is a link to a humorous story Dan Rather has posted on hearing loss and aging:

 

 

 

 

 

My Wake-Up Call

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Glen Island Park, New Rochelle, NY – Mary Grace Whalen

 

It was a busy time for me at my job. During the day, I was a full-time employee at our local College, and by night I was teaching three undergraduate courses to adult learners. In between, I was a contracted employee helping out with student advisement.

I’ve always been reluctant to take time off during a busy period, but I was coughing, losing my voice and wished I could just crawl into bed with a box of tissues. Being a stickler for attendance, I have gone as long as two years without taking a sick day. In retrospect, I’m not sure that was always a good thing.

But I rationalized that it would be just a few more days until I would go on vacation with my daughters, Valerie and Melissa. It was Valerie’s 30th birthday, and we planned a trip to Puerto Rico. I imagined myself sitting under a palm tree, with bright sunshine and perhaps a pina colada with a tiny umbrella in hand. I was certain the warm sunshine and a little rest would remedy this bad cold I couldn’t seem to shake.

Upon landing, I noticed I felt a little heady. It was a feeling similar to being underwater. My first thought was that it was a temporary result of the cabin pressure.

My right ear has always been my good ear, even though otosclerosis has permeated both of my ears. My left ear received a stapedectomy years ago, and it temporarily gave me back some of my hearing. Otosclerosis is an abnormal growth of the middle ear bones which causes them to become fixated and reduces the transmission of sound. Because of the otosclerosis, I have a mixed loss in both ears. Despite all of this, with hearing aids my loss was diagnosed as moderate to severe until 2005.

Shortly after we arrived in our beautiful hotel room in San Juan overlooking plush greenery and a pool with sapphire water, I noticed the red light in the hotel room phone was flashing. I placed the phone to my right ear to listen to messages. I thought it was odd that there was no dial tone, but I assumed my hearing aid battery just died. After changing the battery, still no dial tone. The message was beginning to register, but I was still in shock. I placed the receiver up to my left ear, which I never used for phone conversations, and I heard a faint dial tone. I sat there for a minute in disbelief.

My family members have always been my greatest advocates, and although they did everything they could to try to help me communicate, I was grouchy, touchy, depressed and yes scared. It rained every day while we were there, and it seemed fitting.

Upon returning to New York, I visited an ENT doctor who went the usual route in giving me Prednisone with the hope that the loss was temporary. But he did warn me that it was probably permanent because with this drug you must act fast.

I visited my local audiologist and she tested my hearing over a period of weeks. I remember feeling a strong vibration that was painful when she was testing my residual hearing. But no sound. I did see a look of horror on her face and saw her look at me and exclaim, “Mary!” She then came around to where I was seated and hugged me. I was now profoundly deaf in that ear. A hearing aid only provided hissing that only interfered with my ability to hear on the other side.

So this would be my new normal. I had difficulty following in meetings at work. Trying to continue with heavy phone use was a real stressor. I had trouble functioning in a classroom of 30 students. I resented I could not participate in social activities with friends. At family dinners I focused on eating because I could not hear what was going on. Food became a form of instant gratification and I found myself retreating more and more. I found a comfort zone in isolation. Realizing this, well that was my wake-up call.

www.cochlear.com/us/wakeupcall

After anger, denial and a lot of other emotions, I went into the City and visited a few doctors asking for their opinion on how to go forward. That’s when I started searching for peer-reviewed research articles on otosclerosis and cochlear implantation, and I learned many others had been successfully implanted. When I met Dr. J. Thomas Roland, I knew he would be the one to operate on me for my implant. He had operated on others with this condition, and I liked how he explained to me how Cochlear Americas had different arrays for difficult situations, and all options would be ready and available in the operating room. Despite all this, my surgery was uncomplicated and a standard array was used.

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A view of the drawbridge at Glen Island Park     Mary Grace Whalen

One day, after being activated, I took a walk down by the water in my hometown, New Rochelle, NY. Glen Island Park is a pretty shore area with a drawbridge, gazebos, a sandy beach, grassy slopes, hills, tiny sailboats and larger ones passing through when the guard lifts the gate. One of the rites of summer was to hear the ding, ding ding warning for the bridge to rise, and to see the guard wave to those crossing under the bridge. I have many coming-of-age warm memories of Glen Island, — the smell of Coppertone tanning lotion, transistor radios playing doo wop, cute boys with winning smiles and lifeguards in dark sunglasses.

So, there I was just walking across the drawbridge with my 3G, the first behind-the-ear (BTE) processor Cochlear Americas marketed. I stopped midway. I was in awe. I heard the waves rippling for the first time in years! I heard ducks quacking as the waves rippled below. There I was, hanging my arms over the bridge, my face looking down as tears streamed from my eyes. These were the sounds I missed so much from summers past. I felt like someone just gave me oxygen and I was breathing for the first time in a very long time.

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Glen Island Park, New Rochelle NY just as beautiful in winter.  Mary Grace Whalen

Then I became aware of a car slowly crossing the bridge, looking towards me. Perhaps he saw how emotional I got and thought I was going to jump? Then I felt myself laugh at the irony of it all and continued to exit the bridge.

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A view from the gazebo- Glen Island Park-Mary Grace Whalen

 

Since then, I have lost the hearing in my left ear and opted to go bilateral. Two ears are better than one because they help to localize sound. So much has changed since I received that 3G processor years ago. With new accessories I can once again watch TV, go to the movies, listen to music and participate in a conversation with my grandson. While these may seem like simple pleasures, it’s been a long time and I’m feeling very grateful to be experiencing life again in living color.

Views expressed here are my own. Consult your hearing health provider to determine if you are a candidate for Cochlear technology. Outcomes and results may vary.

Copyright © Mary Grace Whalen 2017. All Rights Reserved. Portions of this article are from my upcoming book, Living In The Color Magenta.

www.marygracewhalen.com

 

 

 

 

 

 

 

 

 

 

Hearing Loss and Aging: Fact or Fallacy?

We’ve all been present at some time or another when someone makes a hurtful comment about hearing loss.  Often, these comments imply hearing loss and aging go hand in hand.

“The ears are the first thing to go, haha.” How many times have we heard this?

Sometimes we witness people imitating a nineteenth-century horn placed in the ear or cupping the ear imitating how we look when we struggle to hear.

Over the years, one of the main reasons I have heard friends or family give when they are resistant to getting help is the negative stereotype society has placed on wearing these devices.  We’ve all seen the advertisements claiming the manufacturer has the smallest device to offer, almost invisible!  Finally, the industry has realized that a plastic flesh-colored instrument still looks like a hearing aid.  Both the hearing aid and cochlear implant manufacturers have realized that many people really want something that is small or similar to mainstream Bluetooth devices.

Is there any truth that hearing loss is a sign of aging?  The short answer is sometimes.  Babies are born everyday who are deaf.  Sometimes, children who are born deaf have multiple disabilities, and sometimes being deaf is their only disability.

Let’s talk about the adult population.  Here are some interesting facts about hearing loss, disease and aging:

“Age-related hearing loss (presbycusis) is the loss of hearing that gradually occurs in most of us as we grow older.  It is one of the most common conditions affecting older and elderly adults.” (nidcd.nih.gov)

“A recent study found that hearing loss is twice as common in people with diabetes as it is in those who don’t have the disease.  Also, of the 86 million adults in the U.S. who have pre-diabetes, the rate of hearing loss is 30 percent higher than in those with normal blood glucose.” (diabetes.org)

“Studies have shown that a healthy cardiovascular system–a person’s heart, arteries and veins–has a positive effect on hearing.  Conversely, inadequate blood flow and trauma to the blood vessels of the inner ear can contribute to hearing loss.”  (better hearing.org)

Having a stroke may damage the areas of your brain related to hearing–this can cause hearing loss. (www.nhs.uk)

Dementia – Many of us who belong to the Hearing Loss Association of America (www.hearingloss.org), have had the opportunity to hear Dr. Frank Lin speak.  Dr. Lin, as an assistant professor at John Hopkins and an otologist and epidemiologist studies the effects of hearing loss in older adults.  According to an article in the January 15, 2015 Chicago Tribune, “A 2011 study of some 600 older adults found that those with hearing loss at the beginning of the study were more likely to develop dementia than adults with normal hearing.  In fact, the more severe the hearing loss, the more likely they were to develop dementia; volunteers with mild, moderate and severe loss were two, three and five times more likely to develop dementia than those with normal hearing. (chicagotribune.com)

I found this interesting because as we age, our metabolism slows down:   In a 2010 study, Shinichi Someya, et al  found that a caloric restriction extends the life span and health span of a variety and species and slows the progression of age-related hearing loss.  The study implies this may be true in mammals. (journals.plos.org)

There are other areas of our well being that hearing loss can affect.  Many people with hearing loss are isolated, depressed, lack socialization and connections, and all of these can affect our homeostasis.  As some of this research implies, the ear is not an isolated part of our being.

Finally, to get back to the beginning of this article which references jokes about the ears being the first thing to go, countless studies by health professional such as gerontologists, hospice workers and others will tell you at the end of life, hearing is the last sense to go.

“Most people with a terminal illness become unconscious in the last few hours or even days before death.  But that doesn’t necessarily mean they don’t know you are there.  Many palliative care and hospice professionals will tell you that hearing is often the last sense to go at the end of life. ” (m.webmd.com)

Well after your loved one can no longer speak, he or she can still hear you say, “I love you.”  (m.webmd.com)  I think that’s pretty amazing.

 

 

 

 

 

Happy International Cochlear Implant Day!

Things I Will Never Take For Granted

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Ocean Waves Crashing at Block Island 2015
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A Seagull at Montauk 2015

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Conch Shell Simulating the Sound of the Ocean

 

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My Kanso Processor that turns me into a hearing person.  Poof!!!!!

A trip down to the shore just to listen to the waves crashing

Seagulls gliding through a blue sky, singing in their own unique language

Being able to hear the words, “I love you”

Walking through the woods and hearing the chatter of all the tiny critters and nature at its best

Celebrating a birthday and being able to hear the people I love sing the birthday song

Crickets singing their slumber song after a weary day

The heartbeat of the people and puppies I love

The intonation and emotion in someone’s voice and words

That clinking sound of two glasses and the words “cheers”

Doing my happy dance around the kitchen table to the tunes of my youth

Being able to hear the words “everything will be alright”

Hearing Auld Lang Syne at the stroke of midnight and knowing the world is rejoicing in the birth of a new year with me

Being able to talk on the phone and laugh and cry about life with friends and family

Being able to talk to my three-year-old grandson, and each of us being able to know and love each other through words

Just being part of the world around me and using all of my senses

How could the day go by without acknowledging the work of Graeme Clark who developed the “Bionic Ear”  and Chief Scientist,  Jim Patrick of Cochlear Corporation www.cochlear.com?  All these wonderful sounds would never be possible for me without their hard work and dedication to our cause.

 

 

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.   

 

 

 

 

 

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.

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.  

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