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?

Disclosing Your Hearing Loss: Why You Should Tell People You Can’t Hear

One of the more frustrating aspects of hearing loss is the constant need to explain it.  Frustrating it may be, but disclosing your hearings loss is vital to maintaining healthy relationships with the people around you.

Before I begin, I’m going to confess it took me a long time to get to the point that disclosure came naturally.  I didn’t know what to say.  I was afraid of ridicule or rejection.  Even though I did nothing to cause my hearing loss, I felt shame.  Eventually I realized that not disclosing my hearing loss caused more embarrassment than admitting it, and so I began telling people.

If you are late-deafened like me, and your speech has not been affected by hearing loss, most people aren’t aware of your hearing challenges.  Even if they can see your hearing devices, they may view them the same way they view eye glasses.  Here is a list of things deaf people do– that YOU might be doing too–  and why we need to tell others we can’t hear.

WHY YOU SHOULD TELL PEOPLE

 

we behave differently.

Many of us compensate well enough to mask our hearing loss, but not quite well enough to seem “normal.”  Most people don’t understand why you behave the way you do.  Hearing loss is the last thing on their minds.  Many of these situations are examples from my own life.

Attractive Lips

we lip read. 

Why you should tell them:  When we lip read, we stare intently at other people’s lips and eyes, or stand a little too close to get a good look at their tongues. Your body language may be misinterpreted as flirtatious, and it may be confusing people.  If the other person isn’t attracted to you, your romantic overtures could seem creepy.  On the other hand, if they respond in kind, it can be embarrassing for both of you.  By being proactive in disclosing your hearing loss and need to lip read, you can avoid those awkward times when lipreading is mistaken for sexual attraction.

We appear to ignore people. 

Why you should tell them: They have no clue why you sometimes give them the cold shoulder, and it makes you seem moody.  If your hearing aid or cochlear implant has a noise cancelling program that minimizes noise behind you, while maximizing sound in front of you, it is possible that your inconsistency in hearing may lead them to believe you’re ignoring them.  They don’t understand why you answer when they talk to your back sometimes and not other times. Also, no one remembers you hear better on your left or right side.  All they know is that you sometimes ignore them.  By disclosing your hearing loss, they may not take it personally.

We don’t laugh at jokes.

Many people tend to drop their voices at the punch line.  Puns can be exceptionally confusing to people with hearing loss and to lip readers.

Why you should tell them:  You seem to have no sense of humor, or worse, you seem slow on the uptake.  

dead cactus
.©2010 Andres R. Alonso / WUSTL.

We laugh at the wrong times.  

Someone says their cat just died.  You hear (or lip read) their cactus died.  You laugh and say, “I KNEW that would happen.”

Why you should tell them: You appear to be the most insensitive person they ever met!  It is much easier to explain that you misheard if they already know you have hearing loss.

cat

We use sarcasm accidentally.

Say someone doesn’t thank you after you’ve performed a favor of some kind.  You hear them mumble something as they’re walking away, and you assume they thanked you because that would be the normal thing to say.  YOU say, “You’re welcome.”  But it turns out, they didn’t thank-you; they said something else.  Now you’ve made them feel impolite for not thanking you, so they turn around, apologize and thank you.

Why you should tell them: You’ve implied they were rude. You seem petty and sarcastic.  However, if you’ve already disclosed your hearing loss previously, you can explain you behavior as a simple misunderstanding, because you didn’t hear.

We avoid the telephone.

Luckily many people like to text, but some still love to talk on the phone.

Why you should tell them: They think you’re avoiding them when you never pick up, especially if you gave them the cold shoulder recently, or didn’t laugh at their joke.  When disclosing your hearing loss, you can let them know that you prefer texts or emails.

We answer the wrong questions.

Coke

(A mostly true conversation.)

Him: “Have you seen my coat?” 

Me: “Last I saw, it was in the closet.”

Him: “WHAT!?! Why would my COKE be in the closet?”

Me: “I saw you put it there yesterday.”

Him: “What are you talking about?  I just opened it.”

Me: “And you didn’t see it hanging in there next to mine?”

Him: “WHAT?!?”

Me: “It’s right next to my BLUE one.”

Him: “My coke ?!?!?!”

blue coat

Why you should tell them:  They’re wondering if you’re crazy.  It’s much easier to explain you thought he said, “coat,” not “Coke” if you’ve previously disclosed your hearing loss.

We accidentally repeat a point someone else just made in a meeting, OR we ask the same question someone else just asked.

Does this ever happen to you? You ask a question and the response makes it clear that the question you asked was already asked and answered by someone else?   “Thank you, Kim, as I just explained to Michael moments ago, . . . “   Embarrassing, right?

Why you should tell them:  You seem inattentive or possibly daft.  By disclosing your hearing loss, the assumption will be that you didn’t hear, not that you weren’t paying attention.

I don’t know about you, but I would rather people know that I can’t hear than having them think I am bad-tempered, insensitive or daft.

As hard as it seems at first, disclosing your hearing loss will make your life easier, because after you tell people, they will cut you some slack if you need a repeat.  You’ll be off the hook when you avoid the phone.  No one will get upset when you don’t say hello.  They will understand you misheard if you laugh about their cat dying.  They will know to exercise a bit of tolerance where you’re concerned.

Have any of these things ever happened to you?  How did you deal with it?

To read more about the benefits of disclosing your hearing loss, go to Michele Linder’s post, Yin Meets Yang

 

 

 

 

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?