Saturday, May 11, 2019

The Phoenix Shall Rise

Image result for birth of a star

“For a star to be born, there is one thing that must happen: a gaseous nebula must collapse. So collapse. Crumble. This is not your destruction. This is your birth.” — Zoe Skylar (from

I recently read an op/ed by David Brooks of the New York Times entitled "The Moral Peril of Meritocracy." In his article, he talks of how people he has met in his life mirror an image of being on two mountains. The first mountain is one of pursuing dreams and ambitions, with the end goal being the end goal. The second mountain is the one that people embark upon when they realize that there is something bigger than themselves and their motivation changes from being self-centered success driven to being driven by a sense of purpose outside of ourselves.

The transformation occurs, not by conscious decision, but rather as either a reaction to a life altering event, or the internal feeling of "there has to be something more."

You can read the op/ed here.

I found this op/ed deeply motivational and introspective of my life. Early in my working days, the goals were always a moving target and always revolved around achieving something. Once achieved, and yet not all that satisfying, I found myself looking for the new goal, the new challenge, the new way to prove something in order to gain a sense of happiness.

Then Meniere's happened.

But it didn't steal that drive. In fact, it made me more focused on achieving and proving and goals.

Then Meniere's happened a second time, in my second ear.

Even this did not squelch the desire to prove myself completely. If I was to be seen as anything, I had to push myself through this miserable disease. I had to rise above. I...I...I.

While I do not consider myself to be narcissistic,  we all have that inborn nature to look out for ourselves first. We want the attention, the glory, the acclamation. That's what we are taught. It's how we see the world. We want to be a star!

But a funny thing happens along the way. Things happen that make us realize that there is much more to this life than what we can cram into it. It's not about cramming at all. It's about giving ourselves away.

I will admit that for a significant amount of time prior to the collapse of my health, both physical and mental, due to Meniere's, I was struggling with my purpose. My passion was still for farming. It still is to a degree, but it seemed empty. Hollow victories followed by more hollow victories. There had to be something missing in my life. My fault was I didn't see what that purpose was, or maybe more so, how to find the real purpose.

Part of this may have been due to the work requirements of running a farm. 80 hour weeks were/are the norm when running a dairy farm. That leaves little time to pursue real purpose. The majority is more likely due to stubborn refusal to allow life to crumble. Yet, this is exactly what I needed to happen to find my purpose. It took hitting the lowest low I hope to ever endure to see the second mountain, the purpose, my rebirth.

Were it not for my crumbling in 2013, I would have never returned to Mayo Clinic. I would have never considered Cochlear Implants. I would have never found my purpose in giving support to countless people who share the bond of misery known as Meniere's disease.

And that exposes the real purpose of life. Giving. The cliche' is true that the more you give, the more you receive, yet its real benefit is not tangible. It's the fact that you become someone trusted to give, not for personal gain, but for the betterment of those around you.

In the summer of 2017, when finishing my requirements for my Associates degree, as part of the speech class I was required to take, during the speech we used to introduce ourselves to the class, there was so much giving. There was an amazing amount of self revelation from the entire class. I marveled at what others and overcome and humbled in that my story was insignificant in comparison, yet they all felt the same way concerning my story to them.

I was reluctant to allow myself to collapse. But because of a power greater than myself, I was forced to. And thus my rebirth began.

My past is my past. My present is reality. My future is uncertain. Yet, without being shown the second mountain, I would not be living a life for others. My work is no longer my passion. It is a means to an end. And that end is giving myself away to others as a support and knowledge mechanism.

I have yet to reach the summit of the second mountain, but the Phoenix is rising!

'til next time


Just a guy trying to live with an invisible, potentially debilitating illness

Wednesday, March 20, 2019

The Hidden World of Hearing Loss

In my second life I have been running headlong into the world of public accounting. This is my fifth year of preparing U.S tax returns for numerous clients. The one enjoyable side effect of this type of work is getting to know repeat clients. I would hope they view me as someone more than a data-entry number cruncher. If the conversations I have with many of them while working on their tax returns is any indication, I would tend to believe I am more.

For example, I recently was working on a couple's return when my personal phone rang. Since I have the ability to hear the phone without anyone else hearing it, thanks to my ability to stream directly to my Cochlear implant processors, I excused myself while I checked to see if it was a call I needed to take.

When I had finished checking, the husband said that the implants must work well because he never heard the phone. I needed to give a quick lesson in streaming ability and the fact that the things on my head were not Bluetooth phone devices, but that I was completely deaf without them.

What transpired next was an unexpected conversation where he related his experience with his hearing loss, total hearing loss in one ear.

As he told his story, it resonated with me because he is living what I did in regards to hearing loss. The fear of noisy environments. The thought process needed to continually place himself on his "good side." The frustration of feeling left out because he can't hear well. The preference to stay home, rather than be in social situations. The "smile and nod" and hope it wasn't an important question or that he didn't just volunteer for something.

Even more, they both shared how their son has a ruptured eardrum that is irreparable and how, because of this, he suffers from debilitating vertigo that can last for days at a time.

It was like my life had been displayed before me. All I could do was nod in agreement as they both talked.

I rarely hide the fact I am deaf, and these connections show me how much of a connection is there, if you open yourself up to it. It was apparent that they felt comfortable sharing these stories with me. Not because I do their tax return, but rather because I understand what the man and his son live with. It's a connection that more people need to make in order to accept their hearing, and vestibular loss.

It's a connection I needed, and one I couldn't offer or accept until my life crashed down around me. People out there need that connection. People need to know others experience the same issues and concerns.

Don't wait until your world crumbles to reach out and get that connection.

'til next time


Just a guy trying to live with an invisible, potentially debilitating illness

Saturday, February 16, 2019

(W)holistic Life

Years ago I was introduced to a thought process that really rocked my world. It was introduced by Alan Savory, a displaced farmer from Zimbabwe. His theory was developed over years of living and farming in a country known for limited resources, both physical and financial. The entire premise of his theory revolved around the belief that the whole is greater than the sum of its parts. It challenges your thinking to view the whole, rather than the components of the whole. The belief is that, with holistic thinking, you will assess the effects of one of the parts, not on how it addresses that part, but the whole.

The reason I am writing about this is that we, as humans, spend a great deal of your lives dealing with the minutia, putting out fires, setting goals, without looking at our life as a whole. When we are young, we want to get an A in this or that class, date the "right" person, get the "right" job. Yet far too often, our pursuits of the parts damages the overall view of the whole. How many pay the price for excessive alcohol or chemical abuse, looking for the quick escape from their reality, at the expense of their long-term health? Looking at the parts causes too narrow of a view. A deemed positve from one thing can have devastating effects on the whole.

I am not preaching. I'm guilty.

All through high school, my goal was to farm. Once I was farming, my goals became "raise production by x amount," "win a production award," "become profitable." But these are all narrow goals, the thing we are supposed to do. Pick up any business or life training book and you will see this mantra proclaimed as the key to happiness. Set attainable goals, mark progress, enjoy the fruits of your labors.

But sometimes those goals are in conflict with the whole. Worse, we become blind to the whole entirely as the goal becomes the whole, even though it is a small part. Your whole becomes smaller by default.

As I am writing this, I am attending my third Cochlear Celebration! This one in Nashville, TN. One of the sessions I attended was by Gael Hannan, writer and speaker. Her focus was on owning your hearing loss. Her message can be applied to many things. I know I have applied it to my life with Meniere's. Once I owned the fact that I have an illness that can cause all the things this disease can, and steal things, I became an advocate, and began to view my life as more than the sum of its parts, rather than the parts themselves.

Those of us with Meniere's know how miserable this disease can be, but it's only a part of my life. It is not my whole life. It has allowed, no forced, me to focus on the positives in life weighed against the negatives. This is the whole. Life is a whole. Life is not broken up into compartmentalized chunks that determine our happiness or misery.

I challenge you to learn to look at the whole, rather than the part that is your current focus.

'til next time


Just a guy trying to live with an invisible, potentially debilitating illness

Thursday, November 15, 2018

The Booth

Years ago there was a short-lived game show created by tennis star John McEnroe called "The Chair". The premise of the show was a play on his frequent verbal sparring with "the chair" during his tennis matches. Contestants on this show were put through a series of medical evaluations to test their resting heart rate and what stress triggers they had. Once this information was in the hands of the producers, they were put in "the chair" and John McEnroe would ask them trivia questions while also attempting to induce a stress response from them. If their heart rate went up by a certain percent from their resting rate, they would lose. The goal was to get people to remain calm in stressful situations, unlike the host was able to do during his tennis career. I remember the first episode involved the lowering of an alligator from the ceiling toward the contestant in an effort to stress them out.

The show was a colossal failure. It may have even been canceled during a commercial break, it was that bad. So bad that the alligator not only failed to stress the contestant, it didn't even move while being suspended. It looked more like a prop than a real alligator.

I would argue that people with hearing loss know something much more stressful than having a game show host shouting at you while asking trivia questions. This stressor is affectionately know as "The dreaded sound booth."

For those losing hearing, this booth is equivalent of a torture chamber. You may go into it full of confidence, but when you come out, you are stressed.

I don't know how many trips to the booth I had while in the process of going deaf, but I am sure it was monthly for at least the first 2 years. Every time it was the same instructions. "Press the button when you hear the beeps." "Repeat the words and sentences."

At first it was no big deal. Then beeps started to disappear. Words such as "sidewalk" and "baseball" sounded like "wah-wah." Sentences became strings of "wah-wah-wha-wah-wah-wah-waaah." Ultimately, the words and sentences disappeared as well. There may be no greater feeling of failure than to go into a hearing test thinking you are doing OK, and then come out hearing nothing, or far less than you thought.

Part of this feeling of failure is that, when you going deaf, you don't know what you are missing, so you don't know you are missing it, until you take a hearing test.

Going through these tests is one stress after another. They become a dread. The mind starts racing, "How much worse will I do this time?" And usually it is worse every single time. It usually spins downward into a mix of profound sadness, anger, and for some, depression. A person instinctively retreats into a world of isolation because, why go anywhere when you can't hear?

This all changes when a person becomes successful with Cochlear implants. The booth may still be a stressor, but the trend changes from downward to upward in scores. People joke that they can't wait to get in the booth to see how much better they are doing, or at least to remember how bad they were doing compared to today.

And speaking of today, I reentered the booth for the first time in 2 years. This time, prior to the reprogramming of my Cochlear implant. It is refreshing to know that after two years of not being tested, my results were stable. I do extremely well with my Cochlear implants, and have no complaints.  It would have been interesting to see if the minor tweaks to the programming would have made any difference in my scores, but nobody lives in a sound booth anyway.

It's just nice to know that I can walk out the door of the clinic and hear.

'til next time


Just a guy trying to live with an invisible, potentially debilitating illness

Tuesday, August 7, 2018

The Same, but Different

Lately there have been a number of posts and letters to the editor concerning how people with Cochlear implants are stuck between a hearing and deaf world. How they don't really fit into either, and how some feel they are losing an identity because of growing up deaf with Cochlear implants. I certainly can see how that may be an issue when you are deaf or hard of hearing from birth, but how about when you had normal or near normal hearing for much of your life and then lose it? Where do people like this fit in?

This isn't a fanciful way for me to gain sympathy from the masses. This is a legitimate question that is only going to be a growing issue as the age of America gets older and more people lose their hearing as we age.

According to World Health Organization statistics, in 2012 there were approximately 360 million people world wide with disabling hearing loss. Of those, 91% were adults and a full 33% of people over the age of 65 having disabling hearing loss. It is pretty clear that as the world gets older, the question of where these people fit in the world of hearing vs deaf is going to be an issue.

I have been living with this issue since 2015.

When I went deaf, due to Meniere's, I wasn't sure of what I was anymore. It took me approximately 2 years to be able to stand in front of a group of people and say, "I am deaf," without choking up and getting teary-eyed.

During this adventure, I have become friends with a few people that have lived their lives as Deaf, or deaf with Cochlear implants. It has given me insight into the world of hearing loss I had no knowledge of. It has also given me some perspective that late deafened people have to deal with.

The reason for this conundrum is that I am deaf, not Deaf. I have no understanding of Deaf culture or to the reasons they have been wrestling with the effects of Cochlear implant technology on their heritage. My hearing loss is not a cultural thing. It is only a physical thing. I can't hear.

One of the items that I have been made aware of is that late deafened people will likely never be fully accepted into Deaf culture because we can never be "deaf enough". I realize that this is a generalization and that there are certainly individual members of Deaf culture that will accept us, just as individuals accept people over a variety of topics and issues, but as a whole, I cannot expect to ever be considered Deaf, only deaf.

It's an issue many will face.

It is also a fact that I am no longer hearing. This may be a harder thing to deal with because this IS my cultural identity. Granted, I do extremely well with my implants, but yet, I am not perfect. There are situations that make me struggle. Voices that are hard to understand. Times when I don't want to hear the endless noise of the world. And there are people in the hearing world that don't get that either.

The rationale of Deaf culture against Cochlear implants for a long time was that they didn't need to be fixed. As a late deafened adult, I didn't need or want to go deaf, and I am far from fixed. I am more likely to consider myself perpetually run by battery power than fixed.

I admit I have considered taking sign language classes to function as a deaf person, yet I don't need them to speak to people. It's more likely that everybody around me would need to learn so they can communicate with me when I am absent my processors. I can talk. I can't hear.

Now take that thought and multiply it times the millions of people that are either deaf and in denial, or will be going deaf past the age of 65. It is daunting to consider how that many people, plus all of their families and support systems, are to suddenly learn sign. To be blunt, it isn't going to happen and that leaves many in limbo. Neither hearing nor Deaf, simply deaf.

'til next time


Just a guy trying to live with an invisible, potentially debilitating illness

Saturday, May 12, 2018

I Think I Found a Theme Song

I'm not one to come up with things like themes nor am I one to place my emotions in the hands of other's works of art. I usually live in the moment and deal with life. Oh, there have been occasions where something grabs me and I can't shake it, but not often. One such occasion was going into my senior year of High School. I was ready to be done. I was done with judgemental kids that had no clue, and out of nowhere Phil Collins releases his hit "I don't care anymore". It became my rally song to endure my senior year.

Another happened last week.

It was the spring "Pops" concert at my kids high school, actually on the way home.

I always have enjoyed music and this concert was no exception. It makes me feel young again and think back to my days in my high school band. Sure, it may have not been a popular thing in my school to be part of the band, choir got more respect, but I am not gifted with  voice. I was gifted with talent as a percussionist. I carried that gift with me into college (the first time) and I played for a small town community band for a number of years, so going back to concerts of my kids feels like a homecoming.

As I left the concert, I was feeling youthful and turned up the volume on my local classic rock station as I was leaving town. I am a closet singer in my truck, when nobody is around, and was belting out the tunes as I was driving.

Suddenly the lyrics of one song hit me. Lyrics I have heard many times, yet this time, they struck me deep to my core:
"Under the Bridge"- Red Hot Chili Peppers
This became a powerful reminder of where I was 5 years ago. I was at depths my soul had never experienced before. I felt lost, hopeless, useless.

It also reminded how far I have come since that time. No longer am I struggling like I was. I have accomplished so much, overcame so many barriers, been blessed beyond what I deserve. Meniere's has left me alone, for the most part. I no longer live in fear of attacks, but rather they are part of my history, part of who I am, but not controlling me.

I, for the first time in nearly 4 years, feel alive again. I feel intelligent, yet not completely whole. I feel confident, yet cautious. I feel wanted in my career, sought after even.

As an exercise for something I was pursuing, I was asked to list my skills and training and the list was long and empowering. Most of it in the last 4 years.

It was this realization that flooded me when I heard these lyrics.

It was at this point that I realized that this WAS my theme song, and I DON'T ever want to feel like I did back then.

'til next time


Just a guy trying to live with an invisible, potentially debilitating illness

Thursday, March 8, 2018

The gift
I just finished watching an episode of the TV show M*A*S*H* and an interaction in the story hit home for me.

In this episode titled "Morale Victory", Hawkeye and BJ are put in charge of morale in the camp. True to form, the story is interrupted by the war. Incoming casualties become the priority. 

One particular soldier had his leg severely damaged, but because of the skill of Dr. Charles Emerson Winchester III, he is able to save the leg rather than amputate, but the patient suffers irreparable damage to his right hand. As Dr. Winchester is consoling the patient about his leg, the patient asks "What happened to my hand?" He revealed he was a concert pianist. He had no use for his legs. His hands were his life.

Why am I telling you this story? Because it drives home a point. I honestly do not know if I can make the point more clearly than the writers to the show when they penned the script,

Charles: “Don’t you see? Your hand may be stilled but your gift cannot be silenced if you refuse to let it be.”
Sheridan: “Gift? You keep talking about this damn gift. I had a gift, and I exchanged it for some mortar fragments, remember?”
Charles: “Wrong. Because the gift does not lie in your hands. I have hands, David. Hands that can make a scalpel sing. More than anything in my life I wanted to play but I do not have the gift. I can play the notes but I cannot make the music. You’ve performed Liszt, Rachmaninoff, Chopin. Even if you never do so again, you’ve already known a joy that I will never know as long as I live. Because the true gift is in your head and in your heart and in your soul. Now, you can shut it off forever or you can find new ways to share your gift with the world–through the baton, the classroom, the pen. As to these works they’re for you because you and the piano will always be as one.”

The reason this strikes home to me is that I still, 4 years removed from my career, seek it out. This piece of the script reminds me that life changes and in the face of those changes, a person must realize that, although part of their life may be gone, it is only that: a part of their life. Life doesn't revolve around what you do or how you do it. Life is about how you deal with the changes. And that doesn't come from the external but from inside. It is the very "gift" that is being talked about in the script. The gift that is found in a persons head and heart and soul.

We all have a gift, yet every person's gift is different. What a shame it would be to let anything, including Meniere's Disease, steal that gift from us.

I have people who often comment on my "ability" to change careers with such enthusiasm and success at this point in my life. I don't see it as that amazing. It's what a person does when faced with challenges. You rise up and face them, or you let them beat you. 

Maybe that's my "gift". 

What's yours? Find a new way to "share your gift with the world". You may find it was the ultimate plan all along.

'til next time


Just a guy trying to life with an invisible, potentially debilitating illness