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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A Tale of Two Canines

 

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Bartram and Noah

 

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Melanie, Bartram and Noah

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

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

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

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

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

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

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

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

Some Alerting Sounds May Be As Follows:

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

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

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

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

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

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Bartram at the Santa Rosa, CA headquarters

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

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

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

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

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

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

What happens after you go home with your puppy?

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

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

How do I connect to other CCI recipients?

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

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

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Bartram assisting Noah

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank you for being with us today Melanie and Bartram.

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

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

Copyright © Mary Grace Whalen 2016. All Rights Reserved.

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

 

 

 

 

 

 

 

 

 

 

Women With Hearing Loss: Going It Alone

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

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

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

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

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

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

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

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

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

What have I learned from Margo?

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

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

 

 

 

 

 

The Truth About Grief And Loss

Weisbaden, Germany
Weisbaden, Germany

Most people over the course of a lifetime endure a multitude of losses that are a necessary and natural part of life. There is the loss of a loved one, loss of one’s younger self, loss of an able body, loss of one’s community after a disaster, loss of one’s livelihood, loss of one’s sense of family or the death of a pet. There are many other types of losses, but these are the ones that often come to mind.

Helen Keller once stated, “What we once enjoyed and deeply loved we can never lose, for all that we love deeply becomes a part of us” (www.goodreads.com). This couldn’t be more true.

It has also been said that grief is the price we pay for love. The greatest loss another human being can suffer is the loss of someone we allowed ourselves to love deeply. We risk the hurt that comes with allowing ourselves to be vulnerable enough to let someone into our heart. That can be a spouse, parent, friend or a pet.

As we grow older, we lose many people. I lost my husband before I lost my parents. That was not the natural order of things. Losing a spouse that you know for four decades is like losing a part of your soul. Losing a parent is like losing part of your deepest history. Losing friends is a rude awakening that anything is possible and time is passing. For those who have lost a child, I cannot imagine the courage it takes to continue on. Pets are sacred gifts that come into our lives, and they are humble and loving.

While it is true that in time, it does become easier, we never truly “get over” someone we love. There is no timeline for grief.   Every individual must experience grief at his or her own pace.

It has been said that grief is like waves. Sometimes you may think you are doing really great, and then something will remind you of that person to bring back quite vividly the deep love you shared with that person. You may smile or weep. It could be 5, 10 or 20 years later and quite unexpected the tears will still flow.

The truth about grief is that love is forever whether it’s a parent, spouse, child or pet. There are many reminders of our time with our loved ones.  It could be a birthday, an old faded picture or someone who is walking down the street who looks like a loved one in the distance. I sometimes pass a man on the street that will be wearing the cologne my husband used to wear and I feel his presence as the person walks by. I went into an Italian restaurant one day and ordered pasta fagiola, and they made it just like my mom did, and I felt like I was back home for a moment at her kitchen table chatting with her.  When I am in the supermarket, the scent of a tomato just ripe off the vine reminds me of my father’s garden.  I love dreaming of people who have passed.  It’s like they came for a visit. I know others who have expressed this sentiment.

So May 21 my late husband would have been 69 years old. What would he have looked like 14 years later? What would our lives be like?  Knowing him from then on will always be the chapter in our lives we never got to know.  But I still feel his presence somehow.

Only God knows where life will take me, and I have an open heart because life goes on. A wise young woman once told me we should love as many people as we can in a lifetime. But I can say this with certainty and gratitude: Love is forever, and there will always be a special place in my heart for this special and much-loved human being.

Happy 69th birthday in Heaven Eddie.

Copyright © Mary Grace Whalen May 2015. All Rights Reserved.