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Here’s To A New Season…

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

 

 

 

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

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

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

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

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

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

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

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

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

Let There Be Sound!!!

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

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

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

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

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

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

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

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

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

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

What’s in a name? My grandson calls me Maya.

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What’s in a name?  Words are symbols, very much like the ancient pictology that was etched in red rock many years ago.  Newborn babies are named after their ancestors, parents or even rock stars before they ever get to speak their own name.

Long before I ever became a grandparent, I thought it would be unique to be called something other than the usual “grandma.”  Being a person who has always enjoyed playing with words, I decided years ago when the time came I would like to be called “Grandmary.”  It seemed to have a nice ring to it, and  it would include my name and that of both my maternal and paternal grandmother.

But somehow, whenever my grandson would greet me, he would refer to me as “Maya.”  It’s a pretty name with a rich history as I soon learned.  We have all heard of children calling family members pet names that have stayed with them for life.

I did a little research and this is what I found:

It is common knowledge that Maya is the name of Central American culture.  But every culture has a take on this name.

Most intriguing is that in Nepali language Maya means love.  I like that.

In Arabian and Indian-Pakistani it means princess or “honorable matriarch.”

It is a short form of Ma’ahan in Hebrew, meaning spring or brook.

Maya means “generous” in Old Persian.

Latin interpretation implies great.”

Roman mythology dictates Maia is the daughter of Atlas whose name was given to the month of May.  Romans Maia/Maya is the incarnation of the earth mother and goddess of spring–for which the month of May is named.

Maya was the legendary Greek mother of Hermes by Zeus.  It can also mean mother.

The Bengali and Bengali Muslim  interpretation is love, kindness, sweetness and kisses.

In Japan “Mayu” means reason and truth.

In Hindu it means illusion.

How did this little boy know I am all that!  Just kidding.

This week my grandson is celebrating his second birthday.  I never knew my maternal or paternal grandmother, but I know somewhere in the universe they smile down on this beautiful little boy.  He symbolizes “spring, a brook, kindness, sweetness and love” to all the “honorable matriarchs” in our family.

He can call me Maya anytime.  I like that.

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.

Invisible Woman: A page in the diary of a late-deafened woman

Many years ago, when I was a student at The College of New Rochelle’s School of New Resources, I had the opportunity to read Ralph Ellison’s Invisible Man.  The book deals with issues such as race, society and identity.  I was deeply moved while reading the book, and it made me think about how issues described in the book could be applied to persons with disabilities or any other group struggling for their right to dignity.  That, along with an experience described in the next paragraph inspired me to write the poem Invisible Woman.

One day while paying for groceries, I witnessed a woman ahead of me in line with her husband.  She appeared to be afflicted by some type of palsy, and after checking out, she had a seizure.  Her husband did his best to comfort her and escort her out of the store, but the clerk snapped, “People like that should be kept at home.”  I was mortified to think anyone has the right to determine if another individual is a valid member of society, and if their presence should be allowed.

That sparked me to write this poem based on my own observations as a late-deafened woman and the sometimes insensitive treatment of persons with disabilities:

Invisible Woman

Your eyes shift downward, or you look away,

I understand your predicament, you don’t know what to say.

You say it’s scary,…to think it could happen to you.

And if it did, you wouldn’t know what to do.

It’s okay, –glance at my deficiency, when I look away.

It’s part of the experience, a natural part of my day.

On no! It’s not catchy! You can shake my hand.

I’m just like anyone you’ve met, across our great land.

We’re really more alike,than you can perceive.

We pray there’s a God.  I for one still believe.

If I ask you a question, you reply to my spouse,

What’s someone like me,doing out of the house?

I don’t mean to frighten, but yes, it could happen to you.

And if it did,do you know what you would do?

You would still marvel at sunsets,and bathe in dewy rain.

You would develop compassion,and learn to sustain

the unexpected changes that would come your way,

–to appreciate life, day after day.

And you know what else might be of interest to all?

We laugh and we love. We learn to stand tall.

And we realize life is full, even after the fall.

Because you don’t see me,doesn’t mean I don’t exist.

The more that you think this, the more that I will persist,

to marvel at sunsets, and bathe in dewy rain,

and develop compassion and learn to sustain

To visit the orcas at Stellwagon Bay,

to blow out birthday candles, –what a thrill, I’m just that way.

To visit covered bridges and lighthouses too,

and yes, I still love the zoo!

But one more thing, before you walk away.

Did you know Milton was blinded with pen in hand?

His work was pure genius, beyond what many can understand.

And Beethoven’s world was silent when he wrote his best songs.

FDR led the country in a wheelchair for three terms, no one’s ever been president that long.

And Edison deaf, yes you heard right.

Over 1,000 inventions! God that man was bright.

The irony of this verse is simple as can be.

The next time you see me, please, please just see ME.

Copyright © Mary Grace Whalen 1999.  All Rights Reserved.

Mortality, Moonstruck and Metamorphosis

Recently, I read the amazing Anna Quindlen’s book Lots of Candles, Plenty of Cake.  In her book, she describes her observations about later life leaving a discussion about mortality for the last chapter.  It got me thinking, especially since I am in my sixties.

Two months after having my first baby, I discovered a lump in my breast.  For months, I was closely watched, and experienced my first mammogram at the age of 26.  Everything turned out fine, but at the time, I ran out and bought life insurance to protect my husband and daughter.  At that moment, I admitted to myself for the first time that I am just another mortal soul.

As we get older, it’s not uncommon to wonder how much time is left.  I don’t think it is morbid.  It is realistic.  Are we aiming to ensure we get to live our best life?  Take that special trip while we are still healthy?  Does it mean time to just go fishing without a care in the world?  For others, it may mean falling in love one last time, or for the first time.  Some just want to sit under a palm tree and watch the world go by.  How about the baby boomer who launches a whole new career?

I’ve given a lot of thought to time well spent.  Living simply.  Meaningful days with family and friends.  Pausing and praying or meditating.  Being grateful for what I have, and not expecting life to be perfect.  Maybe just appreciating a small moment rather than expecting something spectacular to happen.  What is spectacular is life itself, if we take a moment to notice.

What does enlightenment mean to you?  I came home one day and asked my late husband what enlightenment meant to him.  He quickly answered, “When I have a day that nothing goes wrong and I feel peaceful.”  At the time, my response was, “That’s all???”  I finally understand that he was on to something.  I get it.

In realizing our own mortality, it makes us more conscious of living well.  To make time count.  To celebrate what we have rather than feeling bitter or entitled if we don’t have everything we want.  But there is probably no other topic that we fear or dread.  

How do people react to that fear?  Buy that red sports car?  Lose that last 25 lbs?  Spend large sums of money?  Engage in destructive behavior?

In the movie Moonstruck, Rose, Loretta’s mother discovers her husband is cheating on her.  She asks her daughter’s boyfriend for insights into the situation.

Rose:  Why do men chase women?

Johnny:  Well, there’s a Bible story…God…God took a rib from Adam and made Eve.  Now maybe men chase women to get the rib back.  When God took the rib, he left a big hole there, where there used to be something.  And the women have that.  Now maybe, just maybe, a man isn’t complete as a man without a woman.

Rose:  (frustrated) But why would a man need more than one woman?

Johnny:  I don’t know.  Maybe because he fears death.  (Rose looks up, eyes wide, suspicions confirmed)

Rose:  That’s it!  That’s the reason!

Johnny:  I don’t know…

Rose:  No! That’s it!  Thank you!  Thank you for answering my question! (http://www.imdb.com)

Later, Rose confronts her husband Cosmo on the situation.

Rose:  I just want you to know no matter what you do, you’re gonna die, just like everybody else.

Cosmo Castorini:  Thank you, Rose. (www.imdb.com)

Cosmo gets what Rose is saying to him about facing his own mortality.  Despite the humor incorporated in this story, this is a poignant moment.

Themes of mortality and death have been present in literature dating back to ancient Greece, and these themes continue to be present today. We sometimes hate to talk about it, but it also intrigues us.

The monarch  butterfly travels thousands of miles from Canada through North America arriving in Mexico ever year.  Unlike humans, they have a set destination in their journey.  Before they ever morph into  beautiful creatures with colorful wings, they go through four transformations.

Life is a continuous journey.  We morph many times in a lifetime, experience things we never thought we would experience, grow in ways we never thought possible.  We just don’t know when or where the finish line will be.  To me, that means celebrating every day in some small but meaningful way.  In understanding our own mortality, we understand the value and beauty of life itself.