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.
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.
It seems every week there is a new report linking hearing loss to a host of diseases and conditions. Why did it take us so long to realize whatever happens to one part of the body often affects other areas?
Homeostasis– The tendency toward a relatively stable equilibrium between interdependent elements, especially as maintained by physiological processes (www.dictionary.com)
For starters, most of us who have worn hearing aids have foot the bill out of our own pockets for decades. It seems the insurance industry did not make the connection between hearing loss and how it can affect overall health. That is unfortunate. Expensive for us, and perhaps in the end expensive for them if you count the number of people who have not treated hearing loss over the years because it was cost-prohibitive if the connection to disease is correct. Everything we do, every emotion, every small action contributes to our homeostasis.
There are studies going as far back as the 1960s that have studied hearing loss and coronary heart disease. Samuel Rosen and Pekka Olin working out of The Mount Sinai Hospital and New York Eye and Ear Infirmary published an article entitled Hearing Loss and Coronary Heart Disease. They studied members of the Mabaan tribe in southeast Sudan and compared them to Americans in industrial areas of the United States. Diet and stress in America were compared to the simple life and diet of the Mabaan tribe and their quiet surroundings.
In 2014 Dr. Frank Lin, M.D. Ph.D published an article Hearing Loss Linked to Accelerated Brain Tissue Loss. In this article, Dr. Lin discussed the link between dementia and “fast-track” brain shrinkage in older adults.
According to the American Diabetes Association (www.diabetes.org), hearing loss is twice as common in people with diabetes as it is in those who don’t have the disease. With 86 million adults in the U.S. who have pre-diabetes, the rate of hearing loss is 30 percent higher than those with normal blood glucose. Still, the connection remains unknown.
In a WEBMD article penned by Kathleen Doheny, hearing loss is associated with depression in American adults, especially women and in both sexes younger than age 70.
If that isn’t enough, some statin drug studies have implied a possible connection between hearing loss and using the drugs. Some diuretics such as hydrochlorothiazide are suspected of increasing the chances of diabetes as well as one beta blocker drug. So the new question would be, is there also a prescription drug connection to inducing these conditions and/or hearing loss? Either way, these drugs are often life-saving solutions to an immediate and bigger danger.
So what can we do to be proactive?
It seems the same healthy diet for heart disease, diabetes and other conditions is prescribed for overall health. What role does sugar, salt, unhealthy fats play in hearing loss and other conditions? There are many books out there that discuss these conditions and optimum health. Some of my favorite ones are by Dr. Andrew Weil (drweil.com), Dr. Mark Hyman (drhyman.com), Dr. Dean Ornish (www.deanornish.com), Dr. David Perlmutter (drperlmutter.com) and Dr. William Davis (wheatbellyblog.com). Mark Bittman (markbittman.com) has written some good cookbooks with healthy recipes.
Get a complete physical.
Exercise not only keeps the arteries healthy, it helps to move glucose into the right places and out of your body. In addition, it has been shown to improve mood and lessen depression.
Meditate. Find a quiet place after a busy day. This may seem odd to say as choosing amplification over silence is theoretically one of the best ways to keep an active and healthy brain. But at the end of the day, amplification can be tiring as anyone with either hearing aids or cochlear implants will tell you. Controlling stress is equally important.
Stay connected. We are so lucky to be living at a time when there are captioned phones, captioned TVs, amplifying and flashing devices, captioned Broadway shows and movies, amplifying devices in museums and state-of-the art accessories for both hearing aid and cochlear implant users.
Take a chance. Try something new. Be an active participant in your own story. Keep a journal. Read good books that inspire you to be your best you.
Get a dog. Some preliminary studies have shown having a dog can affect blood pressure positively, improve mood and overall well being. You might want to look into getting a service dog with Canine Companions for Independence (www.cci.org) or Dogs for the Deaf (www.dogsforthedeaf.org).
Don’t get discouraged. People with hearing loss have the same needs as those who don’t, — family connections and positive interpersonal relationships, good friends, good times, respect in the workplace and last but not least, a good belly laugh. Find a reason to laugh every single day.
The best way we can use this information connecting these conditions to hearing loss is to consider it a heads up and do everything we can to prevent or control these conditions and be positive.
It was a busy time for me at my job. During the day, I was a full-time employee at our local College, and by night I was teaching three undergraduate courses to adult learners. In between, I was a contracted employee helping out with student advisement.
I’ve always been reluctant to take time off during a busy period, but I was coughing, losing my voice and wished I could just crawl into bed with a box of tissues. Being a stickler for attendance, I have gone as long as two years without taking a sick day. In retrospect, I’m not sure that was always a good thing.
But I rationalized that it would be just a few more days until I would go on vacation with my daughters, Valerie and Melissa. It was Valerie’s 30th birthday, and we planned a trip to Puerto Rico. I imagined myself sitting under a palm tree, with bright sunshine and perhaps a pina colada with a tiny umbrella in hand. I was certain the warm sunshine and a little rest would remedy this bad cold I couldn’t seem to shake.
Upon landing, I noticed I felt a little heady. It was a feeling similar to being underwater. My first thought was that it was a temporary result of the cabin pressure.
My right ear has always been my good ear, even though otosclerosis has permeated both of my ears. My left ear received a stapedectomy years ago, and it temporarily gave me back some of my hearing. Otosclerosis is an abnormal growth of the middle ear bones which causes them to become fixated and reduces the transmission of sound. Because of the otosclerosis, I have a mixed loss in both ears. Despite all of this, with hearing aids my loss was diagnosed as moderate to severe until 2005.
Shortly after we arrived in our beautiful hotel room in San Juan overlooking plush greenery and a pool with sapphire water, I noticed the red light in the hotel room phone was flashing. I placed the phone to my right ear to listen to messages. I thought it was odd that there was no dial tone, but I assumed my hearing aid battery just died. After changing the battery, still no dial tone. The message was beginning to register, but I was still in shock. I placed the receiver up to my left ear, which I never used for phone conversations, and I heard a faint dial tone. I sat there for a minute in disbelief.
My family members have always been my greatest advocates, and although they did everything they could to try to help me communicate, I was grouchy, touchy, depressed and yes scared. It rained every day while we were there, and it seemed fitting.
Upon returning to New York, I visited an ENT doctor who went the usual route in giving me Prednisone with the hope that the loss was temporary. But he did warn me that it was probably permanent because with this drug you must act fast.
I visited my local audiologist and she tested my hearing over a period of weeks. I remember feeling a strong vibration that was painful when she was testing my residual hearing. But no sound. I did see a look of horror on her face and saw her look at me and exclaim, “Mary!” She then came around to where I was seated and hugged me. I was now profoundly deaf in that ear. A hearing aid only provided hissing that only interfered with my ability to hear on the other side.
So this would be my new normal. I had difficulty following in meetings at work. Trying to continue with heavy phone use was a real stressor. I had trouble functioning in a classroom of 30 students. I resented I could not participate in social activities with friends. At family dinners I focused on eating because I could not hear what was going on. Food became a form of instant gratification and I found myself retreating more and more. I found a comfort zone in isolation. Realizing this, well that was my wake-up call.
After anger, denial and a lot of other emotions, I went into the City and visited a few doctors asking for their opinion on how to go forward. That’s when I started searching for peer-reviewed research articles on otosclerosis and cochlear implantation, and I learned many others had been successfully implanted. When I met Dr. J. Thomas Roland, I knew he would be the one to operate on me for my implant. He had operated on others with this condition, and I liked how he explained to me how Cochlear Americas had different arrays for difficult situations, and all options would be ready and available in the operating room. Despite all this, my surgery was uncomplicated and a standard array was used.
One day, after being activated, I took a walk down by the water in my hometown, New Rochelle, NY. Glen Island Park is a pretty shore area with a drawbridge, gazebos, a sandy beach, grassy slopes, hills, tiny sailboats and larger ones passing through when the guard lifts the gate. One of the rites of summer was to hear the ding, ding ding warning for the bridge to rise, and to see the guard wave to those crossing under the bridge. I have many coming-of-age warm memories of Glen Island, — the smell of Coppertone tanning lotion, transistor radios playing doo wop, cute boys with winning smiles and lifeguards in dark sunglasses.
So, there I was just walking across the drawbridge with my 3G, the first behind-the-ear (BTE) processor Cochlear Americas marketed. I stopped midway. I was in awe. I heard the waves rippling for the first time in years! I heard ducks quacking as the waves rippled below. There I was, hanging my arms over the bridge, my face looking down as tears streamed from my eyes. These were the sounds I missed so much from summers past. I felt like someone just gave me oxygen and I was breathing for the first time in a very long time.
Then I became aware of a car slowly crossing the bridge, looking towards me. Perhaps he saw how emotional I got and thought I was going to jump? Then I felt myself laugh at the irony of it all and continued to exit the bridge.
Since then, I have lost the hearing in my left ear and opted to go bilateral. Two ears are better than one because they help to localize sound. So much has changed since I received that 3G processor years ago. With new accessories I can once again watch TV, go to the movies, listen to music and participate in a conversation with my grandson. While these may seem like simple pleasures, it’s been a long time and I’m feeling very grateful to be experiencing life again in living color.
Views expressed here are my own. Consult your hearing health provider to determine if you are a candidate for Cochlear technology. Outcomes and results may vary.
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.
“Although Florence Henderson’s otosclerosis was apparently treated at a time that enabled her to benefit more than me, her picture as well as those staring out from those frames in my surgeon’s office reminded me that my former doctor was wrong in telling me that I would be unemployable by the age of 50. I was 45 years old at the time, and the stapedectomy served me well for another ten years until I received my first cochlear implant. ” mw
Photocredit: By Greg Hernandez, CC By 2.o (https://commons.wikimedia.org)
Like many Americans, I was shocked to learn this morning that Florence Henderson had passed away. She was health-oriented, slender and a seemingly ageless beauty. Her time on The Brady Bunch seemed to make her the eternal “mom” in her orange kitchen for those who are part of Generation X. But her life touched mine in a way she will never know. Like me, she had otosclerosis and she led a proactive example of how we can focus on solutions rather than problems. She continued to perform, despite the hearing loss few knew of.
In this condition, the bones in the inner ear called the stapes, anvil and the hammer become “arthritic” and stop stimulating sound. In addition, the tiny bones break and form blockages in the ear canal. This condition is more prevalent in young women of child-bearing age, but still, there are many men who develop this condition. It is often hereditary, although many bypass inheriting this condition.
Photo from www.nih.gov
For over a decade, I entrusted my hearing healthcare to one doctor for my healthcare. A huge mistake. He ended up being the head ENT doctor at a regional hospital so I trusted he was a pro. He told me there was no hope for me and that I would be “unemployable” by the time I was 50 years old. I remember feeling like I wanted to scream and vomit at the same time. The truth was the Americans with Disabilities Act was about to be signed and there was already an operation called a stapedectomy which could have helped me. The otosclerosis continued to permeate my ears and damage my hearing.
Then one day a friend with hearing loss recommended that I try her audiologist located on the Grand Concourse in the Bronx. Melanie drove me to his office on a crowded Bronx street with cars double parked, — a neighborhood I remembered visiting as a child with my parents for school clothes at the famed Alexander’s. Richard Cortez, M.S. was a kind and intelligent man. As my hearing declined, he witnessed many visits that ended with sobs and resistance to acceptance of my new “self.”
One day, Richard Cortez asked me if I ever heard of an operation called a stapedectomy where an artificial stapes is placed in the ear canal. I hadn’t. He gave me a small card with the name Alan Austin Scheer, MD. He assured me if there was any hope of helping me, this man could.
Dr. Scheer was considered “the” doctor to see for stapedectomies, and he even patented the prosthesis device that would later be inserted in my left ear. As I entered his office uptown on Park Avenue, I noticed a” wall of fame” containing pictures of celebrities he had operated on. People like me who had otosclerosis. Florence Henderson was the first to catch my eye. Then Lorne Greene and others. Below the pictures was a tapestry of Biblical quotes a woman had put together as a gift of gratitude for his work.
The quote that always stayed in my mind was “…and in that day, the deaf shall hear…” Isaiah 29:18-20.
Although Florence Henderson’s otosclerosis was apparently treated at a time that enabled her to benefit more than me, her picture and as well as those staring out from those frames on the dedicated “wall of fame” reminded me that my former doctor was wrong in telling me that I would be unemployable by the age of 50. I was 45 years old at the time, and the stapedectomy served me well for another ten years until I received my first cochlear implant. Today, many people with the same condition would probably be treated with Cochlear’s BAHA or a cochlear implant. And to stress my point, Florence Henderson continued to thrive for decades after receiving her bilateral stapedectomies. After her operation, Florence Henderson formed a longtime association with the famed House Ear Institute as well as many other charities.
To me, Florence Henderson put a face on this little-known condition called otosclerosis and I thank her for that. To me, it was not a “wall of fame” in the end, but a wall of hope. Despite the fact that her death has come as a shock, she knew how to live well. May she rest in peace.
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:
Timer on Microwave
Beeper on Stove/Oven
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?
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.
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?
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.
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?
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.
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.
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.
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.
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.
Consider getting a service dog. This is a big responsibility, but it may supply you with security and companionship.
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?
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.
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.
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.
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.
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.