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.  

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:

 

 

 

 

 

Have you sentenced yourself to a life of solitary confinement?

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Source:  Unsplash Christopher-Windus

I remember back in 1989 when I received my first closed captioning machine.  My family and I sat in front of the television waiting for the machine to shoot out words by newscasters, TV sitcoms or documentaries.  The machines were slow and sometimes they produced garbled or incorrect stories that made no sense.  But I was grateful to have the opportunity to watch television again.  Of course since 1990 all TVs 13″ or larger are required to include a closed-caption option and this soon made the devices obsolete. In the decade that preceded my closed-captioning experience I watched little television.  Many shows were not captioned, and I had difficulty following the words even with assistive devices.

I also had trouble hearing on the telephone,  so that created struggles both in the workplace and with staying connected with friends and family.  Few people understood about the relay and TTYS.  Today, there are several companies that offer captioning for both landline and cell phones.  Smartphones have helped to keep Deaf and hard-of-hearing people connected.  Some doctors now allow notifications by text or email.

I stopped going to the movies back then too.  Today, you can go to www.captionfish.com and find places around the country that have captioned movies.  Recently, the New York City Chapter of the Hearing Loss Association http://www.hearinglossnyc.org/ has announced that by summer of 2018 all Broadway theaters will offer captioning options.  For more information on this click here https://mail.google.com/mail/u/0/#search/semel/15f9449396bb80a4?projector=1.  Until now, only certain theaters offered captioning.

Forget music.  I just couldn’t make it out before I received my cochlear implants.  It was like I was living in a silent movie.

When I think back to times when my children were growing up, with every year that my hearing loss accelerated, I was inclined to tune out more and more.  That was not fair to my family and counterproductive to effectively communicating.

I did my best to “pretend” I was a person who could hear well in the workplace.  Some of my work experience includes being an executive assistant who took dictation over the phone from anywhere in the country, event planning that required I function and communicate well at social events in well-known NY City hotels, being the world’s worst real estate agent, working in the time-sensitive corporate world and finally being a college professor with over 30 students in each classroom.  By the time I came home from work I was exhausted. There is tremendous energy required for a person with hearing loss to function in a hearing world.  At the end of the day, as ironic as it sounds, many people just want to go into a silent world.  But that’s no excuse!

One of the hardest things in my opinion is socialization with hearing loss.  Hearing loss is often misunderstood, and people don’t know how to react.  Some shout at us, others over-annunciate their words.  Some say “Never mind” when we don’t hear what is said.  Frankly, there are some who find it too much work to communicate with us, but let that be their problem.  There are plenty of good people in the world, and we must pick ourselves up and keep moving forward.

We now know that isolating ourselves can cause depression, cognition issues and affect our interpersonal relationships.  It does get hard,  but hearing loss is a sink-or-swim issue.  Stay connected or you will likely suffer repercussions in every area of your life.

After reflecting on all this I have concluded that I am guilty of what so many of us are guilty of.  Without realizing it, we resort to a world of solitary confinement.  If we truly want to stay connected with our interpersonal connections, in the workplace and with friends, we must reach out, take chances, and be a self advocate.  Are you self-imposing a life of solitary confinement because it is easier?

Today, there are so many solutions to improve the quality of life of persons who struggle with hearing loss.  In a future blog, I will talk about some of those products and solutions.  In the meantime, stay connected and keep listening to all the sounds of life.

 

 

 

Sooo…What’s it like to date and be deaf, gray and Italian?

In an old re-run of the Sex and the City series, Candice Bergen plays Carrie’s single boss.  She laments to Carrie that the older man in her life should be seeking women his own age, and that every time an older man seeks an younger partner, the pool gets smaller for her and other older women.  This statement represents a belief held by many older women.

I married my high school sweetheart.  A few years after being widowed, I started dating again. Wow was that ever a shock for me to see what dating was like at 56!   I can’t say there aren’t good and nice men out there.  Sometimes the chemistry just isn’t there.  But as mama says, you can’t hurry love.  I have often looked up to the sky and wondered what my husband would have thought of some of the crazy men I have dated.  I then imagine him looking back down at me shaking his head and asking, “Where did you meet that guy?”  But someday, if we meet again, I have a lot of stories to tell.

Admittedly, the first man I dated I broke up with because I simply wasn’t ready.  Not his fault.  He WAS a good guy.  It’s just some of the random experiences in between then and now that if anything have made me more aware, and yes given me a few laughs.

Take the hairstylist who always wanted to know if I was seeing someone.  Bingo! She knew a man who wore hearing aids, was my age and loved traveling all over the country in his RV, — something I would like to do someday.  There’s a lot of truth to the fact that we who have hearing aids or cochlear implants sometimes communicate differently, and it takes a special person to understand that.  But that is where the similarity between me and this man ends as I soon learned.  We arranged a meeting.

He took me to a top-rated restaurant and called ahead to ask for seating that was conducive to my hearing loss, which was far worse than his.  Nice.  Then after telling him I was trying to lose weight so I was going to watch what I ate, he ordered plate after plate of appetizers, insisting that I taste them all.  I’m sure he meant well.  But he spent the whole night lamenting about how his second wife left him, — taking most of his assets before leaving.  He never asked me anything about my life.  He just talked nonstop.

Then there was the guy who really tried to come into my world of profound hearing loss by learning sign language for those times I might need a little extra help.  That really touched my heart.  But he didn’t know how to talk to wait staff, and returned just about every meal he ordered out with statements about how poorly the food was prepared.  As the mother of a professional chef,  I didn’t digest that well, no pun intended.  Then one night, he asked me to close all the lights in my house because he “borrowed some money from some bad people” who were after him.  My home is not a stakeout!  I later learned his his ex-wife was also after him for child support payments.

By now, I had already received my first cochlear implant.  How about the guy who wanted to know if my hearing would get worse?  I told him I did not come with a warranty.  Besides, he had a life-threatening illness.  What if I asked him about that?  Wouldn’t it be rude? Truth is, my hearing DID get worse.  I now wear two cochlear implants.  So what?

Now this really gets good, or bad might be a better word.  I met this guy who was widowed like me.  Had two kids.  Brought me flowers. Not one dozen, but two dozen on the first date.  Took me to the top of the Rock and on a dinner cruise around Manhattan in the same day.  Took me on a helicopter ride around Manhattan another day and to see the Rockettes perform the Christmas show.  We ate in the best of restaurants and had a lot of fun together.  And then he planned a picnic upstate because I mentioned loving to photograph cows.  But he got into foul moods sometimes without explanation.  He was a no-show for New Year’s eve, and he told me he punched the TV when he found out the diagnosis of his new dog was “deaf.”  I said, “The dog is dead?,” when he called me on the phone.  He said no, “THE DOG IS DEAF!”  So now he had a deaf dog and and a deaf girlfriend.  So his behavior prompted me to do a Google search on him.  It turned out he had a long history of drug and alcohol abuse, and he had an arrest for driving down the street the wrong way in another state under the influence.  He didn’t drink or show evidence of drugs when he was with me, except the moods.  But I attributed it to the grief that comes when we have lost a spouse.  When I read about his abuse and knew how I trusted him, my whole body shook.  I had to sit down and process it.  Although he was of Russian/Jewish heritage, he put down on the record I found on Google that he was Cambodian.  He must have been flying high!

Then there was the profoundly religious man 10 years my junior who loved my silver tresses.  He would call me on the phone at night when he got out of work and talk to me, — for four hours on average.  We talked about life.  About God.  He quoted Biblical passages.  He even told me after his marriage failed he was considering converting to Episcopalian to become a priest.   He opened doors, paid for everything, and I even invited him to meet my children on Christmas eve.  Then he started acting weird.  So, once again this prompted me to do a Google search on him, which I should have done in the first place.  Trust is earned.  Well, not only did he already have another girlfriend when he met me, but she created a blog warning other women to stay away from him.  This woman never knew I existed, but if I ever met her I would have thanked her for not letting me get into this any deeper.

Some of the funniest experiences I have had have been through online dating.  Men lie about their age.  When you meet them in person, they don’t look anything like their picture.  I never went out with anyone who didn’t post a picture.  Show your face if you have nothing to hide.  Then there is the type who has no picture, no profile information but just messages you with a phone number.  Huh?  What is there to love about someone who won’t be transparent?  Then there is the type that posts a profile like it is a resume listing all their accomplishments since the Beatles came to town, letting us know they were at Woodstock and that everyone thinks they are really perhaps 35 or 40. Right!

At the end of my work life, I was an adjunct professor of English.  I taught writing and research courses, and I found myself mentally marking up online profiles with that little red pen in my head.  If you are going to lie, use spellcheck!

Here are some examples:

“I went to collage.”

“I am a docter.”

“I like feminine woman who wear colon.”

Then there is the actual meeting.  One guy I was suppose to meet at Panera Bread for coffee, suddenly stepped out from a hidden doorway when he saw me.  Was he going to slip away if he didn’t like what he saw?

Also,  there was the guy who posted a profile picture about 20 years old that looked like he escaped from a nursing home when we met.  He told me he was from Poland, and that I should know his story was like that of Dr. Zhivago, leaving a wife behind that he later divorced. That he was involved in testing behavior modification in a joint project with the United States.  He claimed he escaped the former Soviet Union and the iron curtain.  History gave away his age.  For a man with a doctorate, if he was going to be a liar, he should at least have a good memory.  It was actually very nice to talk to someone smart. But no thanks.

As far as ethnicity is concerned, the beauty of this age is that we are not out to impress anyone or satisfy their limitations.  We date whomever we wish to date, and many of us care more about mutual values than background.  Diversity can only enrich our experience.  To each his own, but a dedicated, loving partner trumps differences.

I have since given up on online dating, although I know some who have had good experiences.  But I haven’t given up on love.  They say you will meet someone when you least expect it.  It’s always nice to have a partner.  That is the highest compliment you can pay your partner who has passed because it means they gave you a wonderful example of what love SHOULD be.

In the meantime, someday if my husband and I do meet again in the hereafter, I have some funny stories to tell him.

 

 

 

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.

 

 

Reflections On Being Deaf, Gray and Italian on the “eve” of my 70th birthday

Do you ever look at someone and try to imagine who they were as a child or as a young adult?

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Each of us has a story, with many chapters.  In a few weeks I will celebrate my 70th birthday.  For many of us, there are many versions of our “self” that include a younger version and the one that will always be in our minds.   But time does pass, and the older I get the more I realize how important time is.  Use it wisely.  It is the ultimate gift each of us is given.

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    New Rochelle High School Yearbook 1965

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    I think I was 18 in this picture.

On being deaf- If someone had told me in my youth that I would someday be totally deaf, I don’t know how well I would have handled it.  Over the years, I have struggled with this slow progression towards silence and the mindsets society has placed upon those of us who have trouble communicating with the mainstream.  Like most people with hearing loss, I have navigated my journey through rude store clerks, discrimination in the workplace and even jerky people who we thought were sensitive and above treating us like secondhand citizens.

But there is an upside to this experience for sure.  Strangely, I have experienced my greatest growth because of this experience.  Losing my hearing has made me more sensitive to the plight of those on the outskirts of society, it has humbled me and made me really think about what someone else’s journey may be like.  It has also made me determined to complete whatever goals I choose despite being deaf.

In the silence, I heard my own voice and I began to write and publish work.  In my upcoming book, Living In The Color Magenta, I compare going deaf to  smothering and drowning.  That is what it always felt like to me. Going down, no one hearing you and having no voice.  I have said it before, and I will say it again.  If it weren’t for the Hearing Loss Association of America www.hearingloss.org over the last more than 25 years, I don’t know how well I would have fared.  This organization gives people like me a place to go to advocate and share with others in our journey.  Hearing loss is isolating, and like many others I have tremendous respect and gratitude for their work.  This organization and the love of my family gave me courage when I really needed it. We need to always pay it forward.

I am very lucky to be living in an era where there is something called a cochlear implant.  Helen Keller, Thomas Edision, Beethoven and so many others were not.  Almost every week someone approaches me and asks me about this miraculous operation.  I can wake up deaf, and put on my implants and be part of the hearing world.  For this, I will always be grateful.

1012 About gray (grey) hair-I remember finding my first gray hairs when I was 26 years old and pregnant with my first child.  I was mortified.  How could I already have grays?  My hair was very dark brown, and I was still wearing a “Cher” hairdo with bangs and long dark tresses.  The steely grays really stood out.  Over the next 40 years, I went from dark brown to light brown, auburn, blonde and platinum.  One day after being sick and not being able to make it to the colorist, I examined my shimmery grays showing through at the part and I just said, “I’m not doing this anymore.”  I kind of liked that my natural pearly shade matches best with my dark Italian coloring, and it was very liberating to accept my new look and older self.  

To each his own.  I see many women ditching the bottle and feeling confident enough to be  comfortable with their changing looks.  Even my colorist told me in recent years, “You actually look younger with your own natural hair color, even though I lost a customer.”  I appreciated that.

But growing older is about so much more than gray hair.  Time is passing and we are becoming older and more vulnerable.  There’s a greater chance for serious illness or a fall.  That sometimes  scares me.  We lose lots of people we care for and love. These losses are profound.

I have always tried to be there for my children.  I think every parent always feels they want to help their children if there is a crisis for as long as they live.  But somewhere along the way, the tables turn and our kids become our strength.  It’s beautiful to have wonderful children,  but kind of shocking to witness this shift.

On being Italian- I will always be grateful for my strong Italian roots.  Being the daughter of an immigrant parent allowed me to understand the plight of so many generations who have come to the U.S.  My parents gave us a strong Christian faith, my Italian-born father’s love of opera and his garden were inspiring.  My mother’s binding efforts to give us a traditional, strong family life complete with ethnic foods and rituals.  Christmas, Easter Sunday, faith hope and patriotism… all of these were true gifts.

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Mom with all seven of her children
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Mom making her famous lasagne
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With my parents, five of my six sisters and brothers
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Easter Sunday
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With 3 of my 4 sisters a few years ago celebrating St. Patrick’s Day

A few more observations-

Sometimes I can still hear my mother’s voice– At this stage of my life, I look so much like my mother, I almost expect her to answer back when I look in the mirror.  My mother made it through some pretty tough stuff.  As a child, I always felt she was so strong it was almost intimidating.  But somehow, that shy little girl I used to be inherited some of her resilience.  I am grateful for that gift.  I recently was hospitalized after a fall and in serious condition.  As I looked up and saw IV attached to one arm, a nurse taking blood from the other, while one nurse waited to take my temperature and blood pressure, I heard words like sepsis, 104 fever, put her in cardiac care, etc.  Was my life in danger?  How would my mother handle this?  Suddenly, I could hear her firm voice speaking to the grim reaper saying, “I’m not going anywhere!”  So I repeated that phrase in my mind and it gave me courage. I’ve had these moments before, andI suspect I will have them again.

On fathers and daughters- Fathers definitely have a lot to do with how a woman will see herself as worthy and lovable.  I was lucky to have a father that instilled that in me and a good husband who gave that gift to his daughters.

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On being in love- I’m glad that I have loved and been loved.  Even though it hurts like hell when you lose someone, it is an experience to not be missed.  It is one of the greatest gifts in life. No one can ever take that away from you.

Family- It’s all that matters.  Period.  So glad my daughters are not just sisters, but they have always been best friends.

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Birthday parties

 

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Vacationing in Sag Harbor 2015

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On being a grandma- There is nothing like it!  Love this little boy.  I want to watch my grandson grow taller than me, watch him fall in love for the first time, hear his stories and keep that special connection we have forever.

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On dogs- they really are nicer than people 🙂

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Time-  It all comes down to time well spent.  How have you spent your time today?  My kids told me they are holding me to living to 100 years old, and that’s 30 more years of good living for this deaf, gray and Italian lady.  I’m sure there will be many more life lessons.  I’m ready.

 

Happy Birthday to me!   Cheers!

 

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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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