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Transformative Resilience: A Hearing Loss Journey

Resilience has been a hot topic over the past few years.  If you google resilience you’ll find a zillion articles.  Everyone is talking about it.  Recently I came across an article in the New York Times that offered a twist on resilience.  I urge you to read it.  The gist of the article by Kristin Wong, was that people could use adversity to transform their lives, based on concepts revealed in the book, Type R: Transformative Resilience for Thriving in a Turbulent World  by Ama and Stephanie Marston who have studied resilience over several decades.

Wong explains that resilience is the ability to bounce back after adversity, while transformative resilience is the process of changing your life because of adversity.  It’s not about getting over a loss and moving on, or bouncing back, so to speak.  It’s about facing a conflict and coming out with new skills and knowledge that change your life.   

“Adversity usually propels us  forward toward new understanding.” – Rumi

When I first began writing this article, I had planned on listing  ways of bouncing back after hearing loss, but  I found the ideas presented in the NYT article far more compelling.  Though Wong uses the example of a woman in debt, I instantly recognized my own transformative struggle through the six steps after losing my hearing. 

The six steps.

Stage 1 – Comfort Zone.  

Kim, age 4 or 5, sledding with her brother.
I felt more safe with my brother steering for both of us.

Stephanie Marston describes stage one as the period of calm before personal catastrophe hits.  We all experience something bad in life, but before that we mostly go about life making happy plans for the future– and this is a good thing, she says, because we might need to draw strength from our comfort zone later on.  However, staying in  comfort zones too long can make us complacent.   We don’t grow.  

My childhood was good in many ways– it wasn’t perfect by any means—but I have many happy memories that I draw from even now.  I could hear back then, and I loved making music with my piano and flute.   I spent a lot of time outdoors in the woods and at the beach we lived near.  My father read to me at night if he was home.  After I learned to read, I devoured books by the dozens. By high school graduation, I had a rough outline of my life plan.  Hearing loss wasn’t part of it.

“If the path before you is clear, you’re probably on someone else’s.” Joseph Campbell

Stage 2 – Turbulence.  

The Great Wave off Kanagawa -Hokusai. A depiction of turbulenceStage two is the discovery that something is going very wrong.  “The familiar is shattered, and we can no longer count on the reality we’ve built for ourselves,” Stephanie Marston said.  This is an unexpected event that changes the course of your life. 

Right around the time I started college, I found out I had hearing loss.  A lot of people who have hearing loss go to college and breeze right through, but this news knocked me flat.  Losing my hearing didn’t fit in with my life plans.   My doctors didn’t know what was causing the hearing loss.  I didn’t know how deaf I would become.  I didn’t know anyone who wore hearing aids.  It sounds funny now, but potentially losing music was a huge concern.  

When people are in stage two, and have just been dealt a crippling blow of some kind, Marston suggests seeking support from family and friends.  My family and friends (if I told them) were as bewildered as me about how to deal with hearing loss.  There was no support.  Today, there are several deaf organizations, including the SayWhatClub that offers peer-to-peer online support.  Back then, there was nothing.  

m and husband in their 20s somewhere on the Oregon coast. She can't hear.
I couldn’t hear anything and didn’t know what to do about it. Though I look happy here, I’m dying inside.

Aside from college, most people in their twenties date.  Young people worry about their sex appeal almost as much as their future careers.  We rarely see disabled people in magazines or on TV, and if we do, it’s usually a touching news piece about overcoming adversity; it’s never about sexy.  Hollywood bodies are photo shopped to the point of unearthly flawlessness.  Hearing devices, if worn, are brushed out.  People with hearing loss understand that the rest of the world sees us as flawed.  “Hearing-Impaired.”  It can undermine your self-esteem.

At first, I did what many people do when going deaf.  I ignored it.   

“Denial can be comforting but it’s not a place you can stay in for very long.” Stephanie Marston

Stage 3 – Chaos and grief.  

This is the stage when you’re in total upheaval due to the unexpected turbulent event.  You didn’t plan for it, so you don’t know how to deal with it.  People sometimes make poor decisions based on panic and fear.  Depending on the event, you may be going through the five stages of grief.  Marston describes it as being in a no-man’s land.  You can’t go back to your comfort zone, because it no longer exists, but you haven’t established a new comfort zone.

A woman's face colored blue with the caption, "I've been feeling so blue lately. "Years ago, during an SWC convention in Seattle a psychologist spoke to us about the grief process and hearing loss.  Hearing loss is not about losing your hearing, she said, it’s about all those other things you lose in the process of losing your hearing.  A thousand little sounds you can no longer hear remind you of it.  Every. Single. Day.  

The problem with a gradual loss is that the grieving never stops.  I’m not saying sudden loss is easier.  It isn’t.  But with the unknown factor of how bad it will get, and the long drawn out loss bit by bit, it is hard to get ahead of the grief.  Just when you get used to a new low, you’re hit with more loss.  For me, it was cyclical.  I had many long stretches of feeling OK with where my hearing was, but the uncertainty was always in the back of my mind.  When will I lose more hearing?  How long will this level of hearing last?  How deaf will I get, and what will I do if I wake up completely deaf tomorrow?  When I was sad, I did a good job of burying it most the time, but occasionally it hit me hard.  

We grow up believing that if we make all the right choices, our lives will be great.  Then something bad happens, and we realize that having control over our lives is a myth.  No one ever decides to lose their hearing.  Marston claims that in this stage we can sometimes get carried away with what-if questions.  Support from friends and family can keep us grounded and more focused on reality instead of all the things we imagine could go wrong. 

“When you’re falling, dive.” Joseph Campbell

Stage 4. A Catalyst emerges.   

In this stage, you have an epiphany of some kind that can point you in the right direction.  Somehow you come to the realization that you can change, and this propels you forward into new directions.

 I have written about my epiphany before.  Years ago, I was skiing with a friend one winter afternoon when our chair lift stalled.  I noticed a skier zip over the crest of the ridge above.  He navigated every mogul perfectly with ease, though there was something just a little odd about his movements.  He skied toward the chair lift, and then right beneath me.

a disabled man in a red jacket skiing skillfully with his sit-ski
It was his skill that people noticed.

He had no legs.

I sat there transfixed thinking– If this guy can ski so well on a sit-ski with no legs, is he DIS-abled?   It was his skill that set him apart, not his disability. One thought led to another until I wondered, Am I disabled?  Up until that point, I had been using the term “hearing-impaired” to describe my hearing loss.  I understood in that moment that disability or “impairment” is a state of mind.  

From that day on, I stopped thinking of myself as “hearing- impaired,” or less than.  I am a whole person who meets hearing challenges by using special technology, and other adaptive skills like lip reading.  I’m not impaired.     

Marston claims that in this stage when the epiphany happens, it changes your mindset.  The epiphany can’t be forced.  For example, I can tell others with hearing loss this story, but it won’t have the same impact on them, because it’s not their epiphany.  Sometimes the epiphany is a gradual understanding over a period of time. 

“We must let go of the life we have planned so as to accept the life that is waiting for us.” Joseph Campbell

Stage 5– Experimenting with Change.  

This is the stage when you begin to change your behaviors and experiment with a new identity.  You try things out to see what works and what doesn’t.   You push against the limits of your comfort zone. 

“We can’t necessarily change the circumstances we find ourselves in, but what we do have control over and what we can change is our attitude about it.” Marston

Members of SayWhatClub wearing funny glasses at a SWC convention
SayWhatClub friends messing around.

I joined the Hearing Loss Association of America HLAA, which is a great organization.  HLAA didn’t work out so well for me, because of schedule conflicts.  However, it was during one of the few HLAA chapter meetings I could attend, that I met Alan Sprague, a founding member of the SayWhatClub (SWC).  With SWC, I didn’t have to go to meetings.  I could talk to others who had hearing loss while sitting at my computer.  

Through their encouragement, I became more assertive about my hearing loss.  Whereas earlier, I had been shy about telling people I couldn’t hear, in this stage I became almost obnoxious about it.  I didn’t care what others thought.  Either you accepted me and my hearing loss,  or you didn’t.  I didn’t choose to go deaf, and I have no control over it.  If someone couldn’t deal with it, I began to see it as their problem– a character flaw.  

I learned everything I could about hearing loss and the various tools and technologies people used to deal with it, as well as American Sign Language.   I became very open and direct about my hearing loss and I began asking for access.

Stage 6 – a new comfort zone

“If you are your authentic self, you have no competition.”  Joseph Campbell.

Marston claims a new identity emerges in stage six.  After the stage of experimenting, you begin to feel comfortable with your new identity.  For me it wasn’t just acceptance, but pride in who I had become, and what I overcame to get there.  During this stage, I began to feel pride that I was able to meet the daily challenges of hearing loss in a more assertive and organized way.  I no longer felt like a victim of hearing loss.  I had taken control.   

Deaf identity

Kim's cochlear implant processor seen on the back of her head as she holds her hair up.
I posted pictures of my new processor on Facebook.

Identity is a big deal when you go deaf, maybe because the deaf community is a bit fractured.  I think most late-deafened people are confused by the many labels used for deafness and hearing loss at first.  I tried out all the different labels– hearing-impaired, deaf, hard-of-hearing, late-deafened.  Then, a few years ago I stopped labeling myself.  I didn’t want to be boxed in by a label, or someone else’s idea of what that label meant.  Hearing loss is something that happened to me.  It’s not who I am.

Of all the questions people have after they go deaf, how to explain it to others, and the labels we use to describe our hearing, is one of the most discussed topics in any chat group for people with hearing loss.  Deafness is invisible.  There is no right or wrong when it comes to self-labeling and identity.

This picture is a perfect example of stage six.  I was so happy about my cochlear implant that I wanted to show my friends.  I posted pictures of it on Facebook. Many people who aren’t in the deaf/hard-of-hearing community think the entire device is inside and that you get a CI for vanity reasons, which isn’t true.  You wear a processor on your ear with a magnetic headpiece that attaches to your head.  People get cochlear implants when they are severely to profoundly deafened and can no longer benefit from hearing aids.  It’s not a vanity thing.  I don’t care if people see my processor.  I am comfortable with people knowing I can’t hear without it.

 Giving Back

Marston claims that, “after the chaos we will feel motivated to contribute to a less chaotic world.”  We give back.  In my case, that took the form of offering peer support through the SayWhatClub, and other hearing loss organizations.  I feel compelled to be there for others, because no one was there for me when I first lost my hearing.  

I’m not sure what Marston would say about this, but my gut tells me that Transformative Resilience isn’t something we necessarily need to cultivate.   Like the five stages of grief, the stages of transformation happen regardless of what we do, and may not always happen linearly.   Like the stages of grief, people can get stuck along the way.  I didn’t move through these stages of transformation neatly at all.  For me, it was messy, and I got stuck more than a few times.  I regressed after hearing loss setbacks and then moved forward erratically.

By following the advice of those suggesting attitude changes, cultivating gratefulness, practicing meditation and exercising, etc., we might move more smoothly through stages one through six.  But, I think most people will move through these stages on their own no matter what.  Understanding these stages, and knowing they are temporary, could conceivably move someone forward by stimulating feelings of hope.  Knowing each stage is a temporary stepping stone along the path of transformation could make it easier to bear.  

 Do you identify with these stages?  What stage are you in?

Ringing in the Ears: What a Scream

Last week was Tinnitus Awareness Week and the SayWhatClub shared many informative articles on the subject on our Facebook page, where you can scroll back through the posts to find them.  

WHAT IS TINNITUS?

Tinnitus or ringing in the ears is the experience of persistent sound.  It can be in one or both ears or inside the head, in the absence of an external source. A more technical description defines tinnitus as a sensory–perceptual disorder associated with negative affect and high impact on well-being and behavior.

  • Tinnitus comes from the Latin word tinnire meaning “to ring”
  • Tinnitus has two acceptable pronunciations—tih-NIGHT-us or TIN-ih-tus
  • 14% of adults experience chronic tinnitus
  • Hearing loss is the biggest risk factor
  • Tinnitus is number one disability for Veterans, according to military.com
  • Tinnitus is often accompanied by fatigue, stress, sleep problems, and anxiety
  • There is currently no cure for tinnitus, though there are various treatment options available to manage
  • Researchers believe the key to finding a cure for Tinnitus is repairing the brain’s “circuit breakers,” restoring the brain’s central gatekeeping system for control of perceptual sensations.

CAUSES OF TINNITUS

Most everyone experiences ringing in their ears when they’re exposed to loud noise, such as at a rock concert. If they are lucky the tinnitus goes away and no harm done. But, for many the ringing doesn’t go away. Chronic tinnitus can be caused not only by exposure to loud noise or hearing loss, but also by ototoxic drugs/medications, ear or head trauma, and Meniere’s or other disease.Most who live with tinnitus can confirm that all of the ringing, hissing, buzzing, humming, whistling, swooshing, roaring, clicking, squealing, chirping, screeching, pulsing, and trilling going on inside their head can be downright maddening!

I can’t remember a time without noise in my head, but that’s likely due to my hearing loss beginning in early childhood. As I lost more and more hearing, my tinnitus became more severe and harder to ignore and required more effort to manage.

hearing is a brain function

The Scream, 1893 by Edvard Munch

Even before I was diagnosed with hearing loss I knew about tinnitus. My deaf grandmother complained of it, and in her later years she claimed to often hear music that wasn’t there. Musical hallucination, written about by Oliver Sacks in Musicophelia: Tales of Music and the Brain is considered a more complex form of tinnitus.

Neuron in tissue culture

Studies have found that tinnitus and musical hallucination share a common source and neural substrate in the brain. I’ve often thought that it is possible for the two to combine as a way for the brain to make sense of the sounds it hears inside your head—hearing is actually a brain function; your ear merely transmits and transduces sound to the brain.

My tinnitus sometimes falls in the frequency of talk radio.  Occasionally, I actually hear a radio announcer talking inside my head for days at a time. This tends to be the most annoying version of my tinnitus.  I am thankful it doesn’t happen as frequently as the static I hear most of the time.

If you suffer from ringing in the ears or tinnitus, one of the best things you can do for yourself is to find othersSayWhatClub is a great peer-to-peer supportto share with who will understand how tinnitus impacts your life. Even if you find effective treatment and management there’s nothing more helpful than talking about your issues and comparing notes with others who ‘get it’.

Links to more information:

The Atlantic The Sound That Comes From Nowhere

Trends in Neurosciences An Integrative Tinnitus Model Based on Sensory Precision

Trends in Neurosciences Frontostriatal Gating of Tinnitus and Chronic Pain

Georgetown University Neuroscientists Uncover Brain Abnormalties Responsible for Tinnitus and Chronic Pain

Sciend Direct Tinnitus and musical hallucinosis: The same but more

The ABC’s of Living with Hearing Loss

After writing about the importance of disclosure a couple weeks ago, I have been thinking about an easy acronym to use as a reminder.  The ABC’s are easy for anyone.   These  five strategies for coping with hearing loss will lead to more satisfaction and improve your quality of life.

ASK FOR ACCESS.The international sign for deaf and hard of hearing access

Look for this international sign that indicates access for the deaf and hard-of-hearing.Years ago, I went to see a burlesque production at a theater in Seattle.  When buying my ticket, I asked if their performances were captioned.  Of course, they weren’t.  This was a long time ago before John Waldo of Wash-CAP, and Cheri Perazzoli* of Loop Seattle began their campaign to make Seattle more accessible for deaf and hard-of-hearing people.  So the answer was “no.”  I could have gone and been miserable while missing out on most the fun, but I felt bold that day. 

I asked if I could have a front row seat, and told them I would be able to read the performer’s lips if I sat in the front row.  When they agreed and said that I wouldn’t have to pay more, I was surprised.   Additionally, they extended this benefit to one extra friend.  When I arrived they also provided me with a transcript of the production!  I was stunned.  You will often receive a “no” answer when asking for access.  But remember—the answer is ALWAYS no if you don’t ask.

Try to be flexible when they say “no.”  Think of something else that might work for you and ask for that instead. Often times, I find that if they see me as willing to compromise, they will try to meet me half way.   Meanwhile, be sure to support venues that offer access and let them know how pleased you are.

In her last post, Chelle mentioned that we should look for the international sign for deaf technology access.  (See the illustration to the left.)  There is also an app aimed at helping deaf  people find looped access.  This is so cool, because you can download it to your phone, which means you can be a little more spontaneous while out with friends.  It will help you find a nearby venue that offers looped access.

Buy the best hearing devices and ALD’s you can afford.

Notice I did not say to buy the most expensive.  If cheaper aids have the features you need, such as t-coil or noise reduction programs, fine.  But be good to yourself and buy what you need, not the smallest or least visible hearing devices.  Make access to sound your priority when purchasing hearing aids.  Without t-coil, you won’t be able to take advantage of the many venues that are looped for deaf access.  You’ll be left out of the loop.  Access to sound enables a better quality of life and more satisfaction.

Control your environment.

Barking dogs make it hard to hear when someone wears hearing devices.
Ask them to put their barking dog outside or in another room.

Whether you need to move to a quieter table in a restaurant, or ask someone to put their barking dog outside when you visit, speak up.  Hearing people have a natural filter that allows them to isolate the speech sounds they need to hear.  Hearing aids are better at isolating speech than they used to be, but they are far from perfect.

Many people will be unaware of your hearing challenges if you don’t tell them what you need, because they can hear even with the barking dog and clatter of dishes.  It hardly bothers them.  Moreover, expect to tell them more than once.  They will forget.   It does get frustrating having to tell people all the time.  Look at it another way, and realize you must be compensating so well that they forget.  Eventually it will become automatic for them to request a quiet table in the corner, or to put the barking dog in another room when you come over.

Lipreading.  If you rely heavily on lip reading, you may have to consider asking to trade seats with others if someone’s head is in front of a setting sun.  A setting sun in a window behind someone’s head will put their face in a shadow.  Your constant need to look at their lips will cause eye strain with the glaring sun directly in your field of vision.  Tell them.  Alternatively you could ask them to close the blinds.  Another challenge for lip readers is when hearing people want to talk in the dark.  It may seem like a no-brainer to you, but it isn’t to others.  Tell them you need light in order to see their lips.  Whatever you need, maximize communication by taking control of the environment.  It isn’t all about what you hear but what you can see as well.

Disclose your hearing loss.

Whenever you have trouble hearing,  tell people you’re having difficulties hearing them. Don’t wait for something embarrassing to happen.  We all bluff sometimes, but it’s usually better not to.  Realize that your compensating behaviors give you away.  People notice you are “different.”  They just don’t know why.  If you tell them you can’t hear and that you lip read, it changes their perspective.  Instead of thinking you are weird, harebrained, or inattentive, they will understand that you simply can’t hear that well.

Educate yourself.

A young woman wearing a blue tooth neckloop FM system that streams sound directly into her hearing devices.
Educate yourself about what you need for successful communication. ALD’s like the FM system above can be a tremendous help.

Find out what your audiogram means.  Learn about new features on hearing devices. Try ASL if you think it could help.  Research Assistive Listening Devices (ALD’s), hearing dogs, and the American Disabilities Act (if you live in the USA).  Learn about your rights and if there are state laws that will protect you from discrimination.  (If you are not in the US, most other countries have something comparable.  Find out what your rights are.)  Learn if there are resources that will help you pay for hearing aids, a captioned phone or blinking fire alarms.  The SayWhatClub has an excellent resource page called Hearing Loss Resources on the footer of its home page at saywhatclub.org.  Talk to others with hearing loss.  Doctors are often surprisingly unaware of the resources out there to help you navigate your life with hearing loss.   The more informed you are, the better you will be at addressing your needs. These five strategies will go a long way toward improving your quality of life.

 

*(Correction Note- Cheri Perazzoli’s name was previously spelled incorrectly.)