EP004 Plot Twist

Everyone on earth will experience a “plot twist” in their lives. This is my story and how it changed everything. But with a bit of help from others and a lot of personal grit and determination, I’m rewriting my story. And it’s a grand adventure with lots more to go.

Duration: 20 minutes

Hello, welcome to my podcast. My name is Dee and I am The Introverted Advocate. The mission of my podcast is simply this – to create a kinder, more compassionate world through advocacy. I began advocating back in 2014 and I have a few stories I’d like to share. Advocating is like an adventure and it can be done from the comfort of your keyboard at home, or it could be an adventure of meeting new people, learning new skills, or finding out that the world is full of caring individuals who are ready to lend a hand or their heart when they see a need. I invite you to look around in your world and see who might need a little support and kindness. It could be one individual, it could be a group or a cause, it could be a community. Are you ready? All right, let’s get to it.

In the last three episodes, I introduced you to my early childhood. Obviously, I was a bit serious and introspective – even as a five-year-old. To be honest, I’m not sure if I was born that way or if my physical disability brought those personality traits to the forefront as a survival tactic.

In hindsight, those traits became necessary.

Something about turning 40 years old, it sparked in me a new desire to take care of unfinished business.

For over 20 years, I had a nagging question that family doctors brushed off and summarily dismissed.  Not one of them directed me to a specialist who could have answered my questions.

I found it aggravating they were so quick to dismiss me. Oh, how naïve to give mere mortals such power.

Big mistake. I own that now. I should have pressed for an answer. I should have kept asking my question until someone helped me. That’s my bad. I’m sharing as a cautionary tale.

Oh, how I wished I had been assertive in finding an answer. There was a nagging intuition that appeared every so often, but I did not know what to do with it.  Society at that time suggested that we believe everything our doctor says – that they were the experts. And to question authority was rude.

We must take control of our medical destiny by engaging many resources and many experts – please do not make my huge mistake. I am now as assertive as needed to get answers. Lesson learned!

One family doctor (who I later fired in a stand to look out for myself) was flippant when I brought up my concern. He chuckled and conducted a half-hearted exercise to placate me.

I was furious. Don’t mock me, sir.

There seemed to be a huge void of information – almost like a black hole of awareness. To these doctors, my question seemed unwarranted. They did not wish to pursue this topic.

It was only after I maxed out my deductible in October 2013 that I decided to seek a specialist.

Perhaps turning fifty years old was the wake-up call I needed. The assertive “I am going to speak my mind” personality was emerging now. (Better late than never!)

The specialist conducted a test that revealed a startling diagnosis.

My little four-year-old self was coping with two (2) physical disabilities.

Plot Twist!

Oh, my word.

One disability was noticeable because I limped as I walked. The second disability was invisible with no outward symptoms to alert anyone of my problem.  (No kidding, I wish I was kidding.)

This second disability was probably mild in the beginning, yet it affected me in a real way.  Apparently, it grew worse as the years went by.

 Let’s pause here for a moment…

I’d like to share a recording I made on my cell phone just this week.

I sat in my car in a parking lot trying to determine the “best way” to tell you my very personal story.

This is a tough episode for me to share (this topic is still raw and I’m still trying to cope), but I want to be honest about how a diagnosis can impact a person. I’ll now play my cell phone recording and then we’ll get come back and I’ll explain everything.

(From my car recording)

So if we live long enough, we all experience a “plot twist” in our life. You know, when you get news that something huge has changed beyond your control, and it will affect the rest of your life.

Many of us are familiar with that, or we have witnessed it in other people.

In all of human history, plot twists happen on a daily basis.

So that day in late 2013 I went in and received a diagnosis…my “plot twist,” I expected to have to make some adjustments for the rest of my life.  This I knew.

(chuckling to self)  What I did not know, did not expect, was not only would the rest of my life be different, but also my plot twist involved me realizing that my entire past…my entire history – my childhood, teenage years, young adult life up until age 52 – It was much different than I realized!

It was different! It was affected!

I have to tell you it has been four and half years and I still get grumpy on some days when I think about all this.

And there are some days where I just can’t wrap my head around it.

And there are some days where I just have to surrender to it and hang my head… and maybe hunker down in my home and get away from the world for a day or two.

And just muddle through bad days…and then I’ll pick myself up by my boot straps.

Then I’ll say: “What is the meaning of this plot twist in my life? What value may I find from this plot twist…and how may I use it in a positive way?”

It’s taken me a couple of years to find some balance with this.  I will say that one of the extraordinarily positive sides and benefits, if you will, to the last four and half years would be the people I have met.

People who received a similar diagnosis – the same ballpark.

And the ones that are advocates – and they are out there in the world sharing their stories – helping other people.…like me.  They helped me when I was first diagnosed.

I was in shock and desperate for information, desperate for ways to cope.

These folks who had the same diagnosis or the medical field associated with it…these folks are my heroes.  They helped me figure out I would survive this…and thrive with it.

So that’s the bright side to this…these folks.

I would not be sitting here recording a podcast and going global and sharing this very personal story (it still makes me nervous some days to talk about it in public), but the mentors and the role models and my compadres who are in the same boat as I am with their plot twists.

It has opened up the world, and I’m grateful for that.

Grateful for these people in my life.  Those of you…they know who they are.

And I thank you from the bottom of my heart.


Okay, so we are back and let’s just jump to the punchline, here goes:

I am one of 466 million people on earth living with a “disabling” hearing loss. We are five (5) percent of the world population.  Those of us who are hard of hearing struggle to hear our world around us.

Kids represent 34 million. Adults are the other 432 million. The World Health Organization (WHO) reported this in March 2018.

Unfortunately, hearing loss cannot be corrected back to normal functions. It can be “managed” or “improved” with technology and coping skills.

Not exactly the fairy tale ending my little five-year-old self would have wished for me.

I struggle with it. Daily. Sometimes hourly. And it’s tricky.

This won’t kill me, but it can produce a low-grade erosion of my self-esteem. Hearing loss is sneaky and just when you are having a good week, something happens to remind us we cannot understand you.

Or we missed what was spoken when a loved said they love us.  Argh.

Honestly, my hearing loss feels like a shadow, just out of reach yet always following me around.

Other times, my inability to understand the person speaking across the table is like a cloud of despair. It’s so in my face that I cannot escape it. That’s a feeling only my fellow hard of hearing folks can understand. If you are a “hearing person,” this will elude your imagination and comprehension.

Please note:  If you are inclined to brush off a hearing loss as a silly or trivial topic, please don’t.

This is serious stuff. Popular culture tends to ignore and push aside the warnings of untreated hearing loss. Whatever your reasons for ignoring family members who think you may not hear well – well, please know that denial seldom leads to good outcomes.

Yes, there is a stigma associated with hearing loss. And yes, I know many who refuse to seek out answers and possible help with their hearing loss.  I totally understand why.  I get it.

I was also in denial when my family first raised their concerns that I was asking them to repeat things.

A lot. Repeat a lot.

Foolishly, I tried to find quick fixes…like the time I bought that little bottle of stuff that cleans out your ear wax. Except the joke was on me, when one morning I reached into the bathroom cabinet for my allergy eye drops – yeah, you guessed it.  One workday, I sleepily dripped hydrogen peroxide stuff into my eyes by mistake. That was not fun. My eyeballs foamed for 2 minutes.

I was furious. Furious at myself. And furious as I realized there was something wrong with my hearing.

But there are serious ramifications for postponing a hearing test.

Most folks wait over seven years to visit an audiologist for a hearing test. And during those years, their auditory pathways to their brains are beginning to atrophy and slowly close from lack of use.

Yup, use it or lose it.

Our brains are like computers than process sensory inputs.

Our ears and the auditory nerves are the information highway. The vibrations of sound waves enter our ears and magic happens as the vibrations are transmitted to the brain for translation and interpretation.

It’s a mysterious and wonderful process. Until it stops working correctly.  Then you are in trouble.

So, back to Diagnosis Day 2013:  the audiologist showed me my audiogram from the sound booth test.

My shoulders slumped, and I became very quiet…much like my little four-year self.

She explained that I probably began to teach myself to lipread (or speech read) by the time I was four years old. She said this because my speech patterns are such that I must have had good hearing through the first few years of my life until age four.

While I was on crutches with a hip disease at age four, my genetic hearing loss was emerging as a huge factor in my life.  This genetic hearing loss is called Reverse-Slope (or Rising Slope) hearing loss.   It is so rare that no one caught on. No one detected it. School hearing tests missed it.  Family doctors missed it.

As a matter of fact, audiologists and doctors are not well-versed in Reverse Slope hearing loss because we represent less than one percent of all hearing loss patients. I’ll say that again in a different way.

Of the 48 million Americans with some degree of hearing loss, less than one (1) percent of us have Reverse Slope hearing loss. It is that uncommon.

Also called “Rising Slope” hearing loss, we are a minority and mostly misunderstood by medical folks and audiologists. They don’t see folks like me very often — with this Low-Frequency hearing loss.

Because we are so rare a bird, they struggle when programming our hearing aids.

I’ve seen over four (4) audiologists in as many years, and I’m certain each one of them was guessing at how to set up the amplification program.  I know this because each time was a horror, and I walked away with “too much” sound pumped into my ears – all because they thought I needed it.

Each one of them casually advised me to “let my brain adjust.” Well, after 6-8 weeks with no improvement (and several appointments to voice my concern), I was tired of the over-amplification, so became assertive in my complaint of the excessive noise.

Most folks who go for hearing aids will not have this long and drawn out experience.

But my hearing loss is very different. If you want to learn more about Reverse Slope and the problem it presents to both the patient and the audiologist, I’ll post a link to Dr. Neil Bauman’s website.  He is an audiologist who has his own diagnosis of Reverse Slope.  His website is a blessing for me and the other folks who are misunderstood and misdiagnosed (or ignored altogether).

I printed out a page from Dr. Neil’s website and took it to my audiologist to help her understand the complexities of programming for Reverse Slope.

When I sat there in the audiologist’s office at age 52, my entire life changed.  Yes, it changed moving forward, because now I would wear two hearing aids for the rest of my life.

But my past life – my life’s history as I knew it was now revised.

And suddenly I was thrust into an 18-month quest of “looking back” to investigate how my undetected hearing loss had changed the course of my entire life.

During those 18 months after my diagnosis, I researched my rare condition. I talked with other audiologists. I dove down deep to put together the pieces of this hearing loss puzzle and how it affected all areas of my life.

The fallout, the damage in my life was widespread. I was devastated.

(Ugh! My college career was derailed. I had been a straight-A high school student, but at college when I could not hear my professor…well, I failed Calculus Two…twice! Therefore, I graduated college with a C average. My self-esteem after that was rocky.  I knew something was wrong with me, but I could not put my finger on it.)

Hearing loss was the LAST thing I would have guessed back then.

This brought on an emotional tsunami that lasted a long while.

I can only say that the range of emotions I went through …I went from A to Z.

“A” for anger all the way up to “Z” for zombie brain because at one point I walked around in a state of disbelief. Then just for good measure, I went from “Z” back to “A” to be sure I covered all emotions.

Family and friends were unsure what to say. Often my turmoil was so raw and painful that they were at a total loss for words.

And I don’t blame them. Hearing loss is a big mystery. No one knows much about it! I sure did not know anything about hearing loss before 2013.

Back to childhood:  speech reading enabled me to live undetected, under the radar without showing signs that might otherwise have led a childhood diagnosis.

I literally analyzed body language and facial movements to determine what my loved ones and teachers were saying. In a startling twist of fate, my ability to quickly adapt to a sensory deficit caused me to lose out on potential medical intervention that may have changed my life for the better.

No one offered help, because no one knew I needed it. This was an invisible disability. And hearing loss in the 1960s was not exactly the topic of the day.

Quite frankly, it’s still not today.

And because hearing loss is not yet a “household word,” I joined the many advocates around the world whose efforts and energy are directed at raising awareness among individuals, families, communities, health care professionals, hospitals, universities and schools, churches, daycare and so on.

It’s my personal way of turning my “Plot Twist” on its ear… because I want the last word in my life’s story! I’m rewriting my life story and it feels grand.

Thanks for listening to my story. I’ll share more insights into hearing loss over the next months.

For now, this is Dee, The Introverted Advocate. 


Reverse-Slope Hearing Loss

Dr. Neil Bauman’s website.  He has Reverse-Slope hearing loss, too.

He shares his wealth of knowledge on this uncommon hearing loss.

My 2016 essay titled “Unexpected Superpowers.”  If you are a parent with a hard of hearing child, please read my essay. I provide details into my childhood experience with untreated and undiagnosed hearing loss.

The statistics on hearing loss from the March 2018 report by the World Health Organization (WHO).