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?

Yin Meets Yang: the Benefits of Disclosing Your Hearing Loss

By Michele Linder – Originally posted Dec. 14, 2017

There are both good and bad things related to hearing loss, but the misconceptions that others⎯those who do not know what it’s like firsthand⎯have about it are something we who live with it every day have a responsibility to change.

Screen Shot 2017-12-14 at 11.52.25 AM

Reading a Hearing Like Me article, Being the Change: How to End Hearing Loss Prejudice, this morning made me think of my own life and the moments along the way where I felt as if I was doing my part to put a positive spin on living with hearing loss.

Do you remember the exact moment that caused you to turn the corner? That point when you went from accepting the negative of how others see you with hearing loss⎯sometimes we feel as limited as the wrong perceptions we encounter⎯to a more confident and better version of yourself and capability?

For me, it was a gradual, decades-long process. Each teaching moment pushing me toward who I wanted to be without my even knowing I was headed there, until something would happen to shine a light on the positive. I’ve written about such moments, and this article, from November 2014, was a memorable moment for me:

Be What You Want the World to See

Originally posted on the SayWhatClub Blog,
November 20, 2014
 

be who you want the world to see

You just never know… there will be moments when people cross your path at the exact time you need them, for the exact encouragement you are looking for. I’ve had this happen to me countless times in my life, and when it happens I’m always in awe of how the universe looks out for me.

Then, on the flip side, you just never know when your presence in another’s life will be just what they need at that moment. Those moments are just as awe-inspiring, they serve to give you confidence, and to let you know all of the struggling you’ve done to get to a better place can have value, not only for you, but also for others who are struggling and searching for answers.

Sometimes all that is needed is someone to cry with. Never underestimate the power of sharing tears and letting down your guard to show compassion. It means a lot no matter which end you are on.

One morning last week, I got up at 5:30 to leave the house in order to drive (an hour and a half) to Grand Rapids for an appointment with the Morton Building people to talk about some barn improvements I’m looking to make to our pole barn. The gentleman who handles our area of Minnesota seemed very nice via our email conversation, and upon meeting him I could tell he was very eager to accommodate my hearing loss, which I had made him aware of through our Internet correspondence.

Morton Man and I walked to his office and got down to the business of barn brainstorming.  During our meeting, there came a point when we needed to go out into the warehouse to look at some of the applications we were discussing. Talking while walking came into play, and, of course, when someone is trying to show you something and talk at the same time they tend to point at what they’re talking about. Pointing also means they tend to look at what they are pointing at, which is a train wreck for a lipreader, so the Morton Man kept apologizing for looking away as he pointed. I told him it was okay, as there is a learning curve, he would eventually get it.

The Morton Man paused, and I could clearly see he was collecting himself to tell me something personal. When he spoke, he told me our interaction was actually very good training for him because he had a 4 year-old granddaughter with a conductive hearing loss. As he shared her story, it was clear how concerned he and his family were for her and how emotional it was to see their beloved girl struggle to hear. This began a 15 minute discussion about hearing loss, how really debilitating it can be, but also how manageable it can become if you have the right attitude and tools. We talked at length about the information that was out there and how to go about finding that information, and I shared some of my own experiences with him, telling him how hearing loss does threaten to take much from you, but it can’t take more than you let it. At one point he actually broke down and cried and had to collect himself before he continued speaking. I instinctively gave him a hug and let him know that it was okay to cry, as hearing loss is very upsetting. Tears are common and very appropriate.

As we walked back to the office and began again talking about my barn, the Morton Man paused once more to say, “I have kind of a strange request… my daughter’s office is just a couple of miles down the street and I think it would be beneficial for her to talk to you and to see someone who is deaf and who handles it so well.”

I told the Morton Man, “Sure, I’d be glad to stop in and meet your daughter. We can exchange contact information and I can share some resources with her that might help her deal with her daughter’s ongoing hearing loss.”

Our meeting on barn matters concluded and I followed Morton Man to his daughter’s office. The daughter and I had a very similar conversation as the one I had had with her dad, as he looked on. I repeated some of the same information that I had given him and there were about three instances where the daughter teared up and had to compose herself, which, of course, made her dad break down. I held her hand or hugged her each time and then went over and hugged her dad. It came in handy that I come from a family of contagious criers… I’m pretty comfortable with tears.

We all exchanged information and I promised to email the daughter with some research results on groups she might join for parents of children with hearing loss and other information I thought she might find helpful.

The final thought I left the Morton Man and his daughter with was this: Make sure you instill in your granddaughter/daughter that there isn’t anything she can’t do because of her hearing loss. And when you come up against people who might discourage your girl from participating in something because she can’t hear, move on to the next person, and the next until you find that one person who says, “Let’s see what you can do.” If she knows she can do anything, believes it, and then acts upon it, it becomes true… she’ll be okay.

And their little girl will be okay… it won’t be easy, there will be challenges, but she’ll learn some good things along the way to carry into who she becomes as an adult.

Yes, you can be capable, confident, strong, and deaf.  I’ve learned that from people who have crossed my path at the exact moment I needed them, saying “You’re not alone, you’ll be okay.” I’m thankful for the opportunity to pay it forward on days when I’m able to be what I want the world to see.

The Trouble with Hearing Loss Memes

I look for hearing loss memes to post on our work Facebook page. Some are funny, some are true and some are way off base.  Let’s take a look at memes.

This happens all the time with people who have hearing loss and there’s a variety of reasons. We can sense the other person’s agitation and we still didn’t hear it so we nod and let it go. Or someone is in deep denial still and afraid to admit they can’t hear.

Continue reading “The Trouble with Hearing Loss Memes”