SayWhatClub

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?

Navigating A World That Assumes You Hear: How to Deal With Not Being Able to Hear

By Michele Linder

maze-of-worryanddoubt

At whatever stage in life you came to hearing loss, it’s likely no one gave you any specific information on how to deal with not being able to hear. No one instructed you on what to expect, how to react, or what to do to make communication easier. There’s no required Hearing Loss 101 class.  There’s no orientation for newbies that teaches you how to navigate through difficult hearing situations.

          There should be.

I recently posted a great article to our SayWhatClub Facebook Page that I read on The Mighty, a website that publishes “real stories by real people facing real challenges”. In the article, To the Girl Who Saw Me Struggle to Communicatethe author describes a process she’s gone through “hundreds of times” throughout her college career—standing in line at the bistro in the busy student café rehearsing her order before it’s her turn at the counter. 

         “I’ll admit to wondering… if this situation is something she’s dealt with “hundreds of times”, why isn’t she better at it?”

I’m going to break this simple scenario down for you. I spent several decades letting these very simple situations turn unpleasant, frustrating and awkward.

          Yes, I still assess situations that are new to me.  I rehearse, and use my super powers (lipreading, anticipatory and observation skills, etc.)  I do all I can to make things go more smoothly.  No longer am I on pins and needles waiting for what can, and most likely will, go wrong, because–

I tell people that I can’t hear. 

Don’t be afraid, just do it. And, however you say it is fine… for me, I say “Hi there… first, let me mention that I’m a lipreader and I need to see you speak, so please don’t look down while talking or I won’t be able to read your lips.  Lipreading is great, but it doesn’t always work, so I may need you to write down what I can’t hear.”, as I hold up my trusty pad and pen. That may seem like a mouthful, but it’s pretty much a given that anyone behind a counter—wait staff, check-out or bank clerk, etc.—is going to talk to you while looking down, so clue them in at the start of things and they’ll know better.

And, speak up when you foresee a problem. 

If, when you place your order, the counter person asks for your name, let them know you’re not going to hear them call you when your order is ready. Ask for a plan B.  If they make a workable suggestion, great! If not, offer a solution of your own—“I’ll stand over there and watch for you to wave at me when my order is ready, but if I miss it someone needs to come over and get me.”

          If something does go wrong and you miss a cue, and the aggravated guy behind you taps you on your shoulder and rolls his eyes…

Keep your cool.

Because the minute you freak out, all the skill in the world won’t be of any use… you’re now so flustered that any ability you had to figure out what’s being said goes out the window.

And, do let rude people knowin as nice a way possiblethat rudeness is not helpful.

It’s not something they would want from others, so thank them for getting your attention. Tell them you’re deaf and sometimes miss things.  Also tell them the aggravation and eye-rolling isn’t necessary or appreciated.

          If you need justification for calling them out…

Consider it a teaching moment. 

Express your hope that when they next encounter someone that seems to be not paying attention, consider that they might also be deaf.

          “If you do lose your cool, for whatever reason—someone has made you feel “less than” or you’re embarrassed at not hearing and panic—consider this…”

It’s not your fault that you can’t hear. 

Stop buying into the misconception that you’re inconveniencing the world because you have different communication needs.  

          Stop pressing your lips tightly together and glancing at the scuffs on the toes of your black Converse low-top sneakers. No amount of fiddling with your hearing aids or wishing will produce an answer to the mysterious unknown question you didn’t hear. It will never magically appear out of nowhere in written form.  But you can…

Have them write it down, 

thereby creating your own magic! Hand over your paper and pen, and say “You’re going to have to write that down, I’m not getting it… thanks.” Don’t pose it as a question, simply offer instruction for what you need.

It’s empowering when you realize you don’t have to leave difficult hearing situations to chance. When you actively participate in finding ways to make things play out as smoothly as possible, you’ll likely not need a gentle and helpful soul to swoop in and clue you in… you’ll be able to handle the situation yourself before it turns unpleasant.

However, as the author states, she was having an incredibly stressful week.  She was feeling extremely insecure, isolated, and alone with regard to her hearing loss.  We all know how that feels. It’s normal to have bad days when we feel vulnerable and don’t handle situations as well as we could. So, there’s no need to beat yourself up about it. 

          “It’s certainly not my intent to beat the author up in any way, either. I’m really glad she gave the world a window into what life is like with hearing loss. We’ve all had encounters where we’re not in the frame of mind to be our own best advocate.  Sometimes we’re just tired of explaining. Her article made me think about my own bad days, and how far I’ve come in my fifty-seven years.  What I’ve learned along the way has made me stronger and a better person.”

Hopefully, on those bad days you’ll be as lucky as the author was at crossing paths with a particularly tuned-in person who took it upon themselves to step in and help, and who didn’t make a big deal about it.

Sometimes we, and others, can make hearing loss out to be a bigger deal than it needs to be.

          Yes, it is a big deal that one whole sense is not working the way it was designed to work and it affects almost everything you do, especially how you communicate. However…

Take charge! 

Actively work on ways to eliminate what makes a situation unpleasant. Think of it as instruction that increases your self-sufficiency, which in turn makes you feel more capable. And, capable is what gets you out in the world to enjoy your life more.

Live more, isolate yourself less.  Join SWC for more ideas on how to advocate for yourself.

          Most people with a disability want to remain independent and self-sufficient and to feel capable.  Don’t you?

Auditory Fatigue/Listener Fatigue

by Chelle Wyatt

I belong to three hearing loss organizations and they each have something I value (SayWhatClub is closest to my heart). I love my local HLAA chapter for its face to face meetings. A few weeks ago they had Susan Naidu, an audiologist at the University of Utah talk about auditory fatigue or listener fatigue and cognitive energy fatigue. She works with patients in the clinic, trains graduate students to become audiologists and her favorite thing to do is aural rehabilitation therapy. She was happy to talk about auditory fatigue because “it’s a very real phenomenon, it’s a real condition but it’s not discussed much and not researched enough.” It isn’t clinically recognized but many professionals are familiar with it.

Auditory fatigue doesn’t mean people are dumb because they can’t listen, it’s the “energy it takes to fulfill the complexity of listening because listening requires more to go on in your brain in order to comprehend what you’re listening to.” Ian Noon wrote about this in his piece on the Limping Chicken out of the United Kingdom only he called it concentration fatigue. Noon says: “I went to a great conference today. It was riveting and I was hooked on pretty much every word. And then I got home and collapsed on the sofa. I’m not just tired, I’m shattered. I’ve had to turn my ears off to rest in silence and my eyes are burning. I’ve also had about 3 cups of tea just to write this paragraph.”

a picture of a brain in a frying pan with the caption my brain is fried depicts how auditory fatigue feels

Susan introduced us to Kathleen Fuller’s work on hearing loss and cognitive energy. Fuller asks, “How can audiologists better understand and find ways to counteract the underlying factors that cause listeners to decide to quit participating in activities when it takes too much effort to listen? How can audiologists help listeners to strategically deploy their available cognitive capacity in situations where it is hard to listen? How can audiologists prevent listeners from avoiding and withdrawing from social participation because it is too hard to listen?

It’s said we hear with our ears and listen with our brain. Now we add when and how much effort we expend during listening in everyday life depends on our motivation to achieve goals and attain rewards of personal and/or social value.”

Listening takes an effort. It’s not only being able to hear but being able to pull all the components together to communicate properly. It’s being able to understand language, generating an appropriate response and being able to keep it going back and forth to make a conversation. Usually people aren’t just listening either, they are multitasking; washing the dishes, walking, watching TV, etc.

For those with hearing loss it takes even more effort. Not only are they taking in the above but they are trying to decode the message. Add in being visually aware to compensate such as speechreading and body language. The mind races to fill in blank spots in words and conversations which involves guess work. The mental process is “I’m not hearing well enough. I have to do something and physically push the brain to listen better.” After an hour (or less) these people are really tired and experience discomfort, pain and numbness.

What makes listening even more difficult? Noise, it’s the number one complaint for those coming into Susan’s clinic. Trying to filter and ignore noise makes listening harder for hearing people and difficult for the hard of hearing. Even with modern technology in hearing aids such as directional microphones and noise reduction programs noise remains a problem. Restaurants are an example, bars and traffic. (Hearing in cars has never been easy!)

What other things are hard with this much cognitive energy being spent? Remembering things get harder because with so much going on in the mind already, it’s hard to find a place to stash the information. People may have a hard time remembering names because there’s more focus to understand what’s being said. While in a meeting they can be so intent on understanding the words as they are being said that half the meeting information is forgotten.

Because of the intense concentration, hard of hearing employees end up taking more days off. The mental stress affects their bodies causing illness among some. Or to balance out, they stay home evenings and weekends to recuperate, avoiding social activity. For those who don’t work, many tend to withdraw because it’s too much work going to that party, the play or lecture. It’s easier to stay home and watch TV with captions. It’s not worth it in the end, the struggle is too much.

charlie brown lying awake in bed with the caption , "I'm already tired tomorrow.

Mohan Matthen is studying why some hard of hearing people are more successful at socializing than others. He thinks it might be a pleasure factor. When audiologists diagnose hearing loss and fit people with hearing aids they tend to talk about adverse conditions. What if they talked about positive things instead? If a person can exhibit more pleasure in the role of listening they might be more relaxed and less stressed out. Once it becomes pleasurable their listening effort seems to be reduced. No matter how hard it seems, seek listening enjoyment. Make it fun and shoot for positive because the reward will be “I will understand.”

So what helps combat auditory fatigue?

Advocating helps a great deal. What do you need to make this meeting better? CART (live captioning)? Sitting closer to the presenter? Assistive listening devices? One speaker at a time? Don’t talk while multitasking? There’s a lot to be said for planning ahead as well. Think about the environment, talk to the event coordinators, find out if the venue has assistive listening devices such as the CaptiView at theaters or live captioned performances. If you’re going to a lecture/workshop/convention, talk to those in charge well in advance to see what might be set.

Some people report learning speech reading has helped lighten their fatigue. Visiting with people a few at time instead of large groups. Limit interruptions, have a quiet room to talk to family members at large gatherings. Ask for background noises (music or TV) to be turned down or off. Go outside to eat because break rooms usually have lousy acoustics. Take hearing breaks and read instead of watching TV. Arrange for hand signals when conversation needs to be slowed down or when wanting someone to talk louder. Find out what works for you and advocate for yourself. It’s okay to experiment with it all.

More links on auditory fatigue

Studies done on prolonged exposure to audio stimulus (for those who want to go deeper). This phenomenon occurs after an extended period of time listening to speech and happens to hearing people as well. Hearing people have more problems than expected which might be related to an auditory processing disorder. Susan said those with hearing loss all have auditory processing disorders.

Richard Gurgel is studying the relationship of hearing loss and dementia. Are individuals with diagnosed mild dementia experiencing decline in auditory processing? Older individuals who have hearing loss but didn’t have hearing aids showed improvements once aided, not just in quality of life but in skills. People were thinking they had dementia when they didn’t.

Starkey on listening fatigue.

Amplification study. Amplification has limited improvement for those with a steep slope high frequency hearing loss.

Susan recommends the LACE (Listening And Communication Enhancement) Program, it improves listening skills.

More publications by Mohan Matthen on hearing loss and displeasure.