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

Saturday, January 13, 2018

It is what it is

I've reached an agreement with myself concerning this illness. Not a full acceptance, but an agreement. It is what it is. That may be as close to full acceptance as I may ever come.

I think that is where many with chronic illnesses get. Full acceptance may never be achieved, but acceptance of this being the hand they were dealt is what they have. You either play the hand you are dealt or you fold. Sadly, in real life there is no bluffing. Your hand will always get called.

This point was driven home to me recently when I visited my dentist. I had heard earlier that my dentist had retired early and rather suddenly and unexpectedly.

I was scheduled for a routine cleaning and as I was chatting with the hygienist, I mentioned that I heard there were some changes in the office. She went on to tell me of the main dentist's stepping aside from doing any restorative dentistry. The reason? He has the misfortune of inheriting tremors. 

This dentist prided himself on his quality of work and when the tremors migrated to his hands, he decided, or perhaps it was mutual with his medical doctor, that it was time to step aside. He may be 60 years old, at most. Far too young to be considering retirement. 

As chance would have it, he stopped by the office that day and popped in to say hi, or perhaps goodbye. This is the dentist I have seen for nearly 30 years, so we are more than patient/dentist. He knows of my Meniere's disease. We have talked at length about my hearing loss and Cochlear implants. He had even inquired if I would be willing to speak to his father in law concerning Cochlear implants as he knew his wife's father couldn't hear, even with his hearing aids. 

So, he popped in, said hello, and asked if I had heard the news.

Then he laid it out pretty clearly that he got what I have gone through.

I mentioned that I had noticed he had developed head tremors earlier this year. He replied that they had migrated to his hands, and although no accidents had happened, the chance of something happening had increased. "Power tools in a small mouth" were not a good situation, he said. He went on to say that if something were to happen due to this, he wouldn't be able to live with himself. Therefore, it was time to move on.

He offered that his tremors were not life ending, but certainly were life altering. Then he said, "but you know what I am talking about." Indeed I do.

The last year I farmed was also the time when Meniere's was kicking my behind. After I made the difficult decision to end the career I had for 30 years, one of my children's teachers said "I am so glad you made this choice before something catastrophic happened, not because something life threatening happened."

Like my dentist's tremors, Meniere's isn't life ending, but it is life altering.

As my dentist summarized, "It is what it is."

'til next time


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

Thursday, December 28, 2017

How do you explain something no one can see?

I've been thinking recently that I may not be the best poster child for Meniere's disease. This thought comes from me being successful in a change of life situation.

Seriously, I may not be.

Sure, the hearing loss is obvious. I wear hearing devices, but so do many others. I still have times where hearing is a challenge. I likely always will. This is what people see.

Yet, there is so much more to this disease that no one can see. Add the fact that I am no longer having the major attacks. Even when I was, very few saw them. No one can see what a mess my head can be some days.

My boss and 1 co-worker got a glimpse yet only a small fraction of what I deal with. One day at the office, my brain fog was so bad, I had no idea how many days were in a certain month. Literally, no clue. I sat there saying "30 days hath September, April, June, and November...". My boss would talk to me and I would stare at her rather blankly. I apologized and told her she was seeing me in nearly my full glory that day.

This was the first day that I sort of opened up about my illness. I don't wear it on my sleeve. I prefer to be seen for what I can do, rather than what I can't.

My boss did ask a few questions about what I have and I answered them honestly. That's all I can do when asked. I think she understands, yet I am there to do my job, not be pitied.

But what about others I run into? They see me working my tail off, although no longer physically. They see me out and about. I drive. I work. I do things. I'm not bedridden. I don't use a cane or walker. I look "normal".

People may think I am antisocial when I don't drink, but do they think that there may be a health reason? Or how about when I ask about sodium content of foods? Or avoid (as much as possible) caffeine?  Maybe I am strange in their eyes. But because of an illness?

Sports activities are another area I wonder if people get it. I have always been an active guy, partly due to work in my prior life being physical. But now, unless everything is perfect, getting from point A to point B can be a challenge. But people don't and can't see that. What they see is me no longer willing to be part of a parent/child athletic event. They don't know why. I can tell them that I can't turn rapidly, but they can't see that. I often think that to get people to understand, I should push myself in those kinds of things to the point of vomiting due to being so nauseated from the rapid movements. It's like living in a constant state of motion sickness, yet not ever getting sick.

They don't see the cold sweats I get when faced with the prospect of climbing a step ladder. A simple step ladder. I used to climb silos!

In my current job, I run into people that I used to run into, but now I am on the other side of the desk. I get interesting looks when they see me there. They don't really know why I left my former career. Likely, they think I gave up. They didn't see me face down on the ground or in bed for hours.

I'm ok with people thinking what they think, yet I want them to understand.

I don't know how to do that.

'til next time


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

Sunday, October 29, 2017

'round and 'round we go
"Describe your vertigo to me. I envision it as being lightheaded or dizzy."

"Have you ever laid down on a merry-go-round on a kids playground?"

"I've done that as an adult, but there was usually alcohol involved."

"Well, do it when you are stone-cold sober and have it spin for hours, sometimes like someone is walking it around in circles. Other times, like all of your friends are standing around it, grabbing it and pushing it as hard as they possibly can."

"For hours?!"

"Yes, I have laid face down on concrete for 3 hours, unable to move or open my eyes because as soon as I did the world started spinning again."

"How did you cope with that?! I imagine life coming to a stop while that takes place!"

"You spin, you vomit, you crash in bed. And remember, I have begged to die."

"How long does it take following an attack like that to recover?"

"I usually slept for 8 hours or more following an attack like that."

"Do other things bother you during that time?"

"I became extremely sensitive to light and sound, when I could still hear, of course. I know I have barked at my wife to shut up and leave me alone."

"I can't even imagine. When was the last attack like that?"

"Well, I have not had one of those knock me down all day since 2014. I haven't missed them."

"What do you think caused them to disappear this time? Is it diet? Treatment? Cochlear implants?"

"Honestly, I don't know. I did have steroid injections in 2013-2014. My last attack was around February 2014. It was my right ear that was causing all of the issues in 2013-2014 and I didn't get my right ear implanted until April of 2015, so I highly doubt that had anything to do with it. I seriously am starting to believe that I have burnt out. My balance is shot as a regular part of life, and the attacks are gone. When you burn out, it isn't that the disease is gone, but rather that it has damaged your inner ear enough that it no longer is capable of causing attacks. I would not be surprised that it is still active and destroying the rest of my balance in my right ear. I'm just not having attacks."

And that is how the most recent conversation about Meniere's disease with a friend went.

'til next time


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