Although it is difficult to find a reliable and up-to-date figure representing the number of people who enjoy the benefits of cochlear implantation around the world at this time, Cochlear Corporation alone claims 550,000 recipients and growing. Those numbers do not include the other two major brands, but it is apparent cochlear implantation numbers are on the rise.
Thirty years ago, many people who were active with advocacy groups for the deaf and hard of hearing were hearing aid users. Many of us were just learning about cochlear implants. The requirements for cochlear implantation were more rigid. The devices were not equal to the sophistication of the devices we see today. Many of those who were hearing aid users are now cochlear implant users. Although many culturally deaf individuals still remain opposed to cochlear implantation, some have decided to be implanted. However, I respect the right for each individual to make the decision that works best for them.
Often, I have heard people ask other recipients, so now am I a hearing person, hard of hearing or deaf? The thing about cochlear implantation is that although with traditional processors the recipient can often hear very well when they are on, when they are removed they are still deaf. While I would agree what we call ourselves is irrelevant, this is the part that is hard to explain to the person behind you in the grocery store who strikes up a conversation about the devices. Pretty amazing is the response I often get.
There has been a lot written about the Deaf/deaf and identity. Those who were pre-lingually deaf often identify with the capital D because it indicates they are part of deaf culture. Those who grew up with a mild to severe hearing loss often identify themselves as either hard of hearing or late-deafened. Three decades ago, I wrote an article for the publication Silent News called “Between Two Cultures.” The focus of the article at the time was how persons who are late-deafened are not part of deaf culture, yet, they struggle to stay mainstreamed in a hearing world. A lot has changed for persons with hearing loss.
Since then, the Deaf/deaf have been able to reap the benefits of assistive devices and advanced technology and cochlear implants are more widespread in both groups. As a recipient of a cochlear implant many of us have been able to stay mainstreamed. We can communicate with our friends and family, attend theater, talk on the phone, listen to music and live life in real time.
Yet, many will tell you they are very happy they have the option to remove their implants and not hear the person next to them snoring at night, or that jack hammer outside their window. Pretty amazing to be a cyborg, huh?
Are CI users part of an emerging culture? Is it in a formative stage? Feel free to share your thoughts.
Back in 1989, I became involved with the Westchester Chapter of the Hearing Loss Association of America (www.hearingloss.org). I remember my first meeting. It was then that I discovered that there was life beyond my old analog hearing aids. Soon, I became familiar with Assistive Listening Devices (ALDs) and flashing devices.
New technology has given all of us an opportunity to function better and live fuller lives. Over the years, the technology has only gotten better.
Early Devices: Pocketalker, TTY/TDDs and Closed Captioning Devices
My first joy was in trying out the Pocketalker device. If you aren’t familiar with Pocketalker, it is a small device the size of a pack of cards with a microphone and a cord of varying sizes. It can be used for one-on-one conversations, or it can be used extended to clip to a TV or other sound source.
Then there was the day I went to the home of our former chapter president. She was getting a new closed captioning device, and she offered me the one she had been using only suggesting that I make a small donation to our local chapter. The day I brought the device home and hooked it up to my television, my family and I watched words dance across the screen to the sound of high-pitched tiny beeps. The problem with the early devices was the captions were often garbled. Also, many shows were not captioned.
Then there was my first TTY/TDD. I bought this device when my hearing loss became more severe. AMAZING was my first thought! Once again, I could communicate by phone. After that, I got flashing and vibrating devices to alert me to the doorbell, the telephone and to wake me up in the morning. These devices helped me to function and remain part of the workforce.
A lot has changed since those days. Now that I am profoundly deaf and I wear cochlear implants, my needs have changed as well. There will be more on that in a future post. How lucky I feel to be living in a time that has so much to offer persons with varying levels of hearing loss.
Utilizing Cell Phones, Computers, Accessories, and Resources
Perhaps the most pronounced change came with the use of cell phones and computers. Here are some examples of how technology has evolved:
Both hearing aid and cochlear implant users can use Bluetooth-enabled phones to stream cell phone conversations and music directly into their Bluetooth-ready hearing devices. This is of particular value because many recipients are bilateral, and bilateral listening often provides for a richer experience.
Closed-captioning devices are no longer needed for televisions since all televisions 13 inches or larger are now required to have built-in captioning.
There are many captioned landline phones out there that are often free to persons with hearing loss. Companies such as CaptionCall (www.captioncallphone.com) and Captel (www.captel.com) are examples.
Internet newscasts are often captioned just with a click in settings.
Text messages are an option if the caller isn’t comfortable with their level of hearing on the phone.
Cochlear implant companies have developed accessories for persons with hearing loss. Some of these devices include TV devices for better listening, a personal microphone for restaurants and noisy environments and a phone device as mentioned above for conversations and music. You can visit the three major providers at www.cochlear.com, www.Advancedbionics.com, and www.medel.com.
In New York City, Galapro is available for captioning of Broadway shows delivered right to your phone. Check out the application for further details. Aso, don’t forget about www.TDF.org for captioned performances both on and off Broadway.
We are seeing more visual alerting systems in public transportation. Some subway systems such as those in New York offer assistance with loops if you turn on your t-switch. Some cabs provide t-switch amplification.
If I go back to a time when my hearing loss really impacted my life, I think of all that I missed. Decades of movies. Music. Important conversations. Still, I feel pretty lucky. Those who lived long ago never had the opportunity to hear what I got back with digital hearing aids, cochlear implants, and assistive accessories.
Going back in time: Beethoven, Mozart, Helen Keller and Thomas Edison
Think how beautiful it would have been if Beethoven had the opportunity to once again hear the music that brought so much joy to everyone else’s ears. Imagine how much easier it would have been for Thomas Edison to have had an interactive conversation with his friends Henry Ford, Harvey Firestone and John Burroughs. How special would it have been if Helen Keller had been able to have a live chat with her good friend, Mark Twain? I think of this often and feel so much gratitude for living in these extraordinary times that allow me to participate in all the sounds of life. Imagine what tomorrow will bring!
How has the technology for persons with hearing loss affected your life?
Closing Note: Mention of any websites, services or devices are included in this post as a courtesy and are not intended as a statement of endorsement.
According to the National Institute of Deafness and Other Communication Disorders (NIDCD), 1 in 3 Americans between the ages of 65 and 74 have a hearing loss. Beyond that population, about half of those older than 75 years of age have some difficulty with hearing.
While there are many effective solutions to hearing loss such as hearing aids, cochlear implants and assistive devices, health care professionals must always remember to treat the whole person.
For example, let’s take the number of persons with hearing loss who experience depression. Studies often discuss the physical and psychological consequences of aging, but how often are the psychological and emotional needs of the late-deafened population discussed? Is the person of a normal body weight? Do they have an eating disorder related to their frustration with losing their hearing? Do they have co-dependency issues with alcohol or other substances? Has it been addressed? Has a bout of depression been attributed to another health problem when it may be due to the isolating nature of hearing loss?
Years ago when I lost my husband I went into therapy. I was surprised at how little the social worker knew about the consequences of hearing loss. While she thanked me for teaching her all that she ever knew about treating someone with hearing loss, she never discussed why I was engaging in emotional eating. All this made me wonder how much training psychologists, psychiatrists and social workers receive in dealing with hearing loss.
Another issue is factoring in how we feel about all the changes that come along with aging with a hearing loss? How has that affected our lives? Do we feel less attractive wearing a hearing device? Do we WEAR the device as much as we should? Do we socialize less because we aren’t informed about devices or venues that can help us function in situations that we thought were inaccessible to us? Do we feel embarrassed to tell friends we are missing what they are saying? Are our friends and family supportive of us? Do we feel a sense of disconnect because we have lost friends or family members at this time of life?
Hearing loss can be a real challenge. Those of us with hearing loss know about the big bluff. Someone tells us something once, then twice, then the third time we smile and pretend we are with them. Are we in denial of our hearing loss? Do we accept this new older late-deafened person we have become? Has the transition from a mild hearing loss to one that impacts us profoundly affected our lifestyle or our home life? Growing older can have it’s challenges. Have we pasted together who we were and who we are at this stage of life? Do we embrace that identity?
In an aging population, when we are experiencing our worst bout of hearing loss other physical or personal losses are occurring. In a strange way, if we use this tremendous loss as a learning experience, we end up more resilient. We must be our own advocate and seek solutions. But we can sure use a little coaching along the way. We need more health professionals who understand the complexities of hearing loss.
How can health professionals help?
Hospitals and nursing homes are filled with an aging population of people with hearing loss. Health professionals must learn how to communicate and treat people with hearing loss. Signage above the bed in hospitals and voice recognition/visual devices need to be installed. Nursing homes need to ensure patients are wearing their hearing devices, have working batteries and routine device checks. Dentists need to wear surgical masks with a clear view to help us read their lips. Psychologists must read up on the consequences of hearing loss in later life and remember to include their findings in treating the whole person. Doctors must have visual/vibrating devices to help patients know when their name is called in the waiting room. Printouts of instructions, a diagnosis and contact information should be routine. Text and email communications are long overdue.
All of this can help to prevent misdiagnosis. Most of all, professionals who are informed about the consequences of hearing loss help to promote a state of well being and inclusiveness for their patients. Baby boomers are change masters. They take a problem and seek out new and innovative solutions. The solution here is inclusiveness in healthcare. We are long overdue for new practices. Let’s all work for change and be the master of our own journey.
In my last post, I mentioned how much I appreciated how candidly Dan Rather spoke about his own hearing loss at a book lecture. A few weeks ago, I attended another book lecture, this time the guest speaker was Anna Quindlen.
Anna Quindlen has a way of speaking that can make anyone in the room feel like she just stopped by to chat over a cup of coffee. She is refreshingly honest, down to earth and funny. In person and on paper she comes across as someone who is acutely aware of the human condition. Then there was the moment she mentioned that when she was younger she stuttered.
Writers have a wonderful opportunity to inform and enlighten others through their words. But it doesn’t stop there. All people who are famous are in a unique position to show others that persons with disabilities can be found in every walk of life. This is important because it reminds the younger members of society that sometimes barriers can be broken.
Here is a sampling of some well-known individuals with disabilities past and present who have been successful:
Thomas Edison, Bill Clinton, Stephen Colbert, Jane Lynch, Jodie Foster, Ludwig Van Beethoven, Leslie Nielson, William Shatner, Eric Clapton, Andrew Foster, Lou Ferrigno, Helen Keller and Nanette Fabray
Winston Churchill, King George VI, James Earl Jones, Marilyn Monroe, John Stossel, Tim Gunn, Joe Biden, Bruce Willis, Samuel L. Jackson, Mike Rowe, Jack Welch, Bill Walton
ADD and ADHD:
Justin Timberlake, Jamie Oliver, Will Smith, James Carville, Michael Phelps, Paris Hilton, Jim Carrey, Ty Pennigton, Sir Richard Branson, Terry Bradshaw and Pete Rose
Ray Charles, Andrea Bocelli, Stevie Wonder, Helen Keller, Louis Braille, John Milton, Jose’ Feliciano and Homer
Prince, Elton John, Danny Glover, Alexander the Great, Theodore Roosevelt, Harriet Tubman, Truman Capote, Lewis Carroll, Edgar Allan Poe, Julius, Caesar, George Gershwin, Vincent van Gogh, Socrates , Charles Dickens and Michelangelo
We also know of the impact people like Stephen Hawking and Christopher Reeve have left on society.
The message here is that when there is an open discussion about famous persons and their disability, it reminds society that persons with disabilities have the potential to be major contributors in our society given the chance. If you look at some of the talent listed here, the world has been enriched with music, art, science, literature and profound insights.
I am a late-deafened baby boomer, but I am a bilateral cochlear implant recipient, so I can function pretty well while wearing my devices. Due to my less-than-perfect hearing, I arrive at these events well in advance to ensure good seating. On this particular evening, I was able to get a second-row seat in the center of the event area. Eager and ready, I pulled out a small microphone that serves as an assistive device to supplement my cochlear devices. Needless to say, staying connected to our world is a priority those of us who suffer from profound hearing loss need to keep up with.
As the program began, the crowds clapped and you were seated. It took a few small adjustments to make sure the store’s microphone for the event was working optimally. I sat in my seat feeling somewhat conspicuous pointing my personal microphone in your direction. As you looked straight ahead, I did my best to hear the program and get the full benefit from assistive technology. But wait. Did I spot at least one hearing aid when you turned your head? Perhaps then, you would understand why I was pointing this tiny device in your direction. I was trying to get the full benefit of your words.
Right before the questions from the audience began, you stated you had a confession to make. You informed the audience that your hearing is not what it used to be, preparing them for the possibility of not hearing a question or even answering it inappropriately through no fault of your own. Then you went on to tell the audience about Walter Cronkite who suffered from hearing loss in his lifetime. You added a humorous story that so many of us whose hearing is not what it used to be can relate to.
But it didn’t end there. A young man in the audience with a small child opened a discussion about race. He said that he looked around the room and there were few people in the audience that looked like people “where he comes from.” It was so important that the young child with him could witness your insightful response. It was also important to me that this young child heard you speak openly about your own hearing loss, sometimes with the humor we all need to keep things in perspective.
Finally, often on social media I see young people with hearing loss or culturally Deaf individuals ask what kind of job someone with hearing loss can do. You validated the point that persons with hearing loss can be whatever they want to be just by being present and speaking candidly. Hearing loss is a disability, and unfortunately issues concerning persons with disabilities is an often forgotten part of discussions about diversity.
Getting back to that small child, through your words, the next generation was reminded that although change often comes slowly, an open discussion gives a voice to those of us who have felt on the outskirts of society for whatever reason. Mr. Rather, that is something that unites us, and I thank you.
As the year comes to a close, we often become introspective about life and the year ahead. As I grow older, one truth is for sure. Time is the most important gift we can give others or ourselves. Time well spent on wellness, friendship, family, being productive and sometimes just being still with nature, — it’s all good.
One thing experiencing deafness has taught me is that there is a value to sitting still in the quiet and coming to terms with problems both large and small. Sometimes we need to pause before we can move on to the next dimension in our lives. It is in those moments that we find solutions.
In this hurried world, it is hard to believe stopping to refresh our thoughts is a productive state. But it is sometimes necessary especially as we grow older.
Babies are born. We see people we love struggle with illness and pain. People die. We must always keep the torch burning and share some light with others, especially in their time of need.
How do we measure time? We are all here for just a brief nanosecond. More and more, I want every second to count. I don’t think most of us realize early on how quickly life passes or that life can change in a second.
Sometimes life happens in the simplest of moments.
I for one love to go out in the woods to just listen to the language of the tiny animals, watch diffused sunlight move through the trees, smell the autumn air or feel the crunch of snow under my feet. Somehow, that’s where everything comes into focus. Just me, the forest and the tiny critters.
The ocean seems to be the place most people will go for solitude or reinvention. I’ve always felt that may be because it may take us back to the safety of our first journey in amniotic fluid before taking our first breath. When my hearing loss accelerated and I no longer could hear the waves crashing, I felt like the Earth had lost its rhythm or heartbeat. I felt disconnected for a long time until I could hear those sounds again.
We are far more connected to nature than we realize. Just a day off from the office and into the woods will remind us that there is so much more going on in this world than the frenzied pace we are used to. We are only part of the equation.
I remember a few years ago, one of the professors I worked with decided to retire. When everyone asked him what he wanted to do in retirement his answer was simple. He wanted to spend more time sitting under his favorite tree. That’s all. But he didn’t get to do that very much when he was working.
Whenever the year comes to a close, like many people, I ask myself where am I going? How can I be a better person? What matters? But this year I am challenging myself to the question, “How will I spend my time in the coming year?”
Maybe it’s good to live our lives like every day is our only day. We spend so much time on trivia. Here’s to the coming year and time well spent.
Do certain sounds of the season evoke fond memories from another time? Perhaps they signal the beginning of the holiday season?
When I was growing up, if my mother pulled out her 33 RPM record with Nat King Cole singing The Christmas Song, I knew Santa was soon to be on his way. Hearing the clink of ribbon candy hitting the bottom of her Depression-era glass candy dishes meant she had finally completed the last measure of preparation and decorating. Later on, we would hear the sound of the tension springs on the oven door as she pulled delectable goodies from the oven.
Here are some sounds of the season that are special to me, past and present:
Hearing the organist at Radio City Music Hall play holiday tunes
The sound of heavy, crunchy snow under my boots
Hearing someone feverishly ripping off wrapping paper and hearing in their voice how happy you made them for picking out something special
Playing Feliz Navidad by Jose Feliciano over and over because it’s a feel-good tune
Ditto for Brenda Lee’s Rocking Around The Christmas Tree
Hearing the Salvation Army ring their bell and knowing there are still good people who take the time to care about the downtrodden
Hearing my grandson sing Jingle Bells with his Pre-K class with enthusiasm– children are the ray of hope for the world
Taking the time to go see The Nutcracker, and enjoying the music
Bumping into someone dear while shopping, and having a special catch-up chat
Staying up until midnight on December 31 to hear 10-9-8-7-6-5-4-3-2-1…Happy New Year! and watching people all over the world celebrate new beginnings
The clink of two glasses toasting and celebrating all that was and all that we hope for in the coming year
What are some of your favorite sounds of the season? I’d love to hear from you!
May you have reasons to enjoy the season. Here’s wishing you hope, peace, joy and many reasons to feel gratitude.
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.