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

Sunday, October 15, 2017

Stop fooling yourself
I was chatting with a friend recently when the subject of our shared hearing loss became the subject of the chat. I had mentioned that there was a gentleman in my church that has been using the personal listening devices we offer to assist in hearing the service.

As conversations go, it ended up being a wide ranging discussion of our hearing loss journey to the point of us both getting Cochlear implants. Our reasons for needing this technology are different, as to the cause of the loss, but the story is similar.

This friend mentioned that the turning point was when they realized just how much of their kid's life they were missing. That led to a deep sadness that continued after they got their Cochlear implant. Not a sadness over getting their hearing back, but the fact that there was so much they would never know that they missed before the implant.

I mentioned that I was really in denial about my hearing loss. Sure, I knew I was not hearing well, but I never realized how little I was really hearing.

There was an insecurity the last few months before my return to the doctor. This was before I even realized an implant was an option for me. I was becoming paranoid in my conversations in public. I would notice people staring at me while I was talking to others. Yes, really. I brushed it off as best I could, but it continued. Why were people staring at me? What was their problem?

Turns out, it was my problem.

One thing that people losing their hearing are in denial about is that we think we are the only ones that can tell. We go about our life compensating as best as we can. We attempt to hide it from others because the stigma of being hard of hearing or deaf is so great, especially as a late deafened adult. It's human nature. We don't want to be seen as different.

Not only hearing, but how many people walk around with poor eyesight, yet refuse to get an eye exam and glasses. They use "cheaters" as long as they can, even though they are cheap and maybe not that effective. Yet when kids and adults alike, finally get glasses they are amazed at what they had been missing.

But that acceptance for hearing loss is still not there. We hide, deny, and reject the fact that we lose our hearing. For some it means they are officially "old". For others, it makes them seem less intelligent. Nothing could be further form the truth.

So, why was I having this perception of people staring at me? I got that answer very quickly when I had my Cochlear implant activated, or switched on. I still had enough hearing in one ear that I could hear myself. I was in denial yet that I was deaf, and I was only hopeful that this device would restore some sort of hearing to my 18 year deaf ear. I walked into the office that day and was talking to my wife and the audiologist. Yes, I could barely hear them and myself.

At the moment she went live with the Cochlear implant, I got the full exposure to why people were staring. Yes, they actually were. And the reason was very simple. I was one of the rare exceptions to the typical activation in that I could understand speech immediately and I was loud. Not just a little loud. I was yelling loud. I now understood why my wife and kids would accuse me of yelling at home. It's because I was. I was yelling in order to hear myself. I had no idea. Yet everyone else did. I was yelling so much, that it was actually exhausting me to talk.

The next day I had my second programming session and the audiologist's first words to me were something along the lines of "I can tell you are much softer today already." I could tell too. My chest actually hurt from not using so much force to speak.

The point I am making is this: I applaud the gentleman for finally using the PLD's, I do not know the struggles he was having to hear. I am sure some of them were emotional on his part. It takes courage to own up to your loss. It takes courage to seek help. It takes courage to have people "know" you have severe hearing loss.

But really, chances are, they already know.

'til next time


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

Wednesday, August 30, 2017

To drive or not to drive? That really is the question.
Such a simple question, and yet such a difficult answer.

When I developed Meniere's disease in 1992, there was no question that I was not driving any time soon. But as time passed, I went back behind the wheel. It's part of dealing with this disease. You need to reclaim your independence.

Same thing in 2013.

It really becomes another burden you bear when deciding when, or if, it is safe for you to get back behind the wheel of your vehicle.

Some states make that decision easy for you. Maybe even some countries. If you are diagnosed with anything that makes it a possibility that you could endanger yourself or other motorists, it is the responsibility of the medical professional to report it to the Department of motor vehicles and you get your license suspended and until you prove that you are episode free for a certain length of time, you don't drive.

My state is a bit more lenient. They do have a part of the statutes that deal with conditions that may impair your ability to drive, but reporting them to the DMV is voluntary. Expected, but voluntary. Once you do, the same time test comes into play.

But that isn't the real burden. The burden is the fact that the choice to get behind the wheel could cause permanent, or deadly, outcomes.

Oh, I pushed the envelope, but it always hung over your head. "Should I really be driving today?"

From 1993 to 1995, I avoided driving more than I drove. Late 20's and need to be driven around. Humbling and even a bit embarrassing indeed. But it was the right choice on my part. Back then, those duties fell on whoever I could find to haul me around. Since I was single and farmed with my parents, a majority of that driving fell on them. There was also my bowling league teammates that went out of their way-literally-to help me out and attempt to keep me part of life at a young age.

2013 I had a chauffeur. No, not a paid one, but I had a daughter in need of hours for her permit in order to get her license. If needed to go somewhere, she hauled me. And it was one of these trips that proved how this was the best choice at the time. I had a drop attack while riding with her. So violent that I screamed out loud and thought she had rolled the pickup. All I saw was the front of the truck going up in the air, like we were rolling over in a ditch. I must say, she handled like a pro and didn't flinch, or panic. A huge accomplishment for a 15 year old. And at least we were nearly home.

As time rolled along, the attacks became less frequent and less violent and I slowly resumed driving.

That was sometime in 2014.

Now, thanks to being virtually attack free, I drive. And drive. And drive.

Partly due to necessity, with school and work. Partly because I can. It's been a long road.

No, I never did volunteer that I had an illness that caused vertigo to the DMV, but I did take the responsibility of driving very seriously. I still do. I will stop driving again if, or when, the attacks ramp up or return. And it will crimp my lifestyle tremendously. But so would me being responsible for the death of anyone else.

Thankfully, I have had a few good years and I have had enough time that if I needed to give it up again, I could probably work from home, thanks to Internet and things becoming "virtually" possible.

So, to drive, or not to drive? That is the question. And just like nearly everything else with this disease, it all depends.

'til next time


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