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

Thursday, July 27, 2017

Sometimes it's just time

I was talking with my wife recently. Husbands should do that from time to time.

Current management at her place of employment recently laid off 3 employees and eliminated those positions. One the those eliminated was a long time employee of the facility. 45 years, to be exact. This person had started working there while in high school and had built her entire career around this facility. She was highly regarded in what she did.

As you can imagine, this did not sit well with staff and clients, my wife included. In my wife's duties, she worked with this person on a nearly daily basis and said that this person was the glue that held her department together.

And just like that, she was gone.

But this isn't a whine session about how business works, or if this employee was mistreated in being let go a few months short of early retirement age. It is a story about how people respond to things that are thrown at them from out of the blue.

Sure, she wanted to stay on until reaching full Social Security retirement age, but it didn't happen. The day after being let go, my wife had a chance to visit with her. She told my wife "You, know, this may be a blessing in disguise. This place has been draining the life out of me for 45 years. I think it may just be time to cut ties with it and move on." It was though the stress and pressure had just been lifted off her.

A few years before I hung up my milking apron, I had a friend call it quits from being a dairy farmer. His wife had no idea he was considering it until he said something to their lender. A few days later I ran into her and she said he couldn't stop smiling since making the decision to leave it behind.

Again, the relief from the stressors was that big.

And then there was me. Farming was my life. Farming was my career. I lived for my cows. I was burnt out from the stress of running the farm and trying to battle through the worst year with Meniere's. Sad thing is, I had made some decisions that last year that would likely have had a tremendous positive impact on the profitability of my business in the years to come. But the price was a heavy one that first year, and it happened right in the middle of the worst year I ever experienced with this disease. Not a good combination.

So there I was. Physically, I was a mess. Mentally, I was burnt out.

I reached the point I needed to decide something, and I felt the best course of action, at that time, was to leave my career behind.

Probably one of the top 5 worst days of my life was the day I loaded my dairy cows on a trailer. I was upset, sad, disappointed, and felt like a complete failure. That is, until the last trailer left the yard with the last cows on it. Then it was like the world of pressure was lifted off my shoulders. I didn't smile, but I had the feeling come over me that this was OK. I would be OK. My family would be OK. Life would go on.

I shared that with my wife when she was talking about her co-worker. She replied that she could imagine the relief on my part of no longer having the concern over who was going to care for the cows during any future attacks and days in bed.

And I could imagine the relief her co-worker may have felt when she said it may be a blessing in disguise.

There may never be a perfect time, but sometimes it's just time.......

'til next time


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

Tuesday, July 11, 2017

Boiling Point

I have written about this subject quite a bit, but I am not sure I have dug into it in detail. For this entry in my blog, I want to dig into the reasons behind my decision to go ahead with my Cochlear implants.

In 1992 my world was literally turned upside down. You know the drill, Meniere’s disease. The vertigo came on fast and hard. I began having drop attacks almost immediately. The first was sitting at my parent’s house eating breakfast. Boom! Out of nowhere, I was on the ground. Several more followed. All of them I ended up on my right shoulder…..on concrete. Never a warning.

Sometime in 1993 my ENT had become concerned enough with the frequency and severity of the drop attacks that he began to discuss more serious measures to control them. He offered up the options and his opinion of the options, looked at my audiogram, and suggested we try Gentamicin  injections. The reason he considered this route was due to the results of my audiograms. My hearing was nearly shot from Meniere’s. If memory serves me correctly, I was near 90dB on the true tones test, and it was flat. 90dB across all frequencies. The trial hearing aid did nothing but give me a headache. It was with this in mind that he suggested the equivalent of a chemical labyrinthectomy. He was a full disclosure doctor and warned me that while he was quite confident the injections into my inner ear would reduce the vertigo and the drop attacks, it would likely leave me permanently deaf.

It is rather sad that being left deaf is a better option than living with vertigo, but that was my choice. And it was a rather easy one. Give me the injections.

Over the course of the next three years, I received 3 intratympanic injections of Gentamicin in my left ear.

They worked exactly as he predicted. By the time I received the third one my vertigo had diminished from several attacks per month to a couple attacks per year. It also left me permanently deaf at 120dB.

But that was fine with me. I was young (29). I was getting married. I had one good ear. Most important, I had my life back. Life was good.

Adjusting to only one ear wasn’t much of a problem and I don’t think many people even knew I was stone deaf in my left ear. I learned to position myself so my good ear was toward people when choosing seating arrangements. I learned to turn my head enough to hear people if they were on my bad side, or I moved. A minor inconvenience at best.

Fast forward 10 years and the beast took over my right ear as well. But the hearing loss was subtler and fluctuating. At least the vertigo didn’t return-----yet.

Fast forward another 8 years and all heck broke loose. The vertigo returned with vengeance. The hearing loss became more pronounced and fluctuated wildly. The drop attacks re-appeared. And worst of all, people became nasty and unaccepting of my losing my hearing.

I can’t even remember all of the people or the comments that I heard concerning me being stubborn about not getting hearing aids. “Get it fixed.” “Why don’t they cure you?” “You can’t tell me that in all these years, they don’t have a solution.” “All you need is hearing aids.”

I’m sure there was more.

What people refused to understand was that I had gone down this road before. 1992, to be exact. I knew what was happening and I also knew that there wasn’t a hearing aid in the world that would do diddly squat for my hearing loss. Besides, that wasn’t even my biggest concern. I just wanted the horrible vertigo to stop. I. DID. NOT. CARE. HOW!

This disease causes enough stress of its own on a person without the unknowing, or should I say “all knowing” general public telling you how you should suck it up and move on.

It’s rather hard to “suck it up” when you are spending the vast majority of your day trying to not throw up.

The drive to seek help was getting rid of the drop attacks, first and foremost, and the only reason I went back to my clinic after a 7-year absence. I knew this disease was stealing my hearing. I was ready to accept that.
Activation day!

The day I found myself sitting in the exam room, I had not planned to ask about my hearing loss, yet I did. I am not sure why I did, but I did. Yet I remember well that I sat there feeling all the stress that had been on me from the vertigo, drop attacks, going deaf, and people, that I blurted it out at the end of the appointment. “Is there anything that can be done for my hearing loss?” 

I was ready to hear “no.” That would have been comforting at that point. It at least would have given me validation for what others considered stubbornness.

Instead I got what have become some of the sweetest words I have ever heard. “You would be an excellent candidate for cochlear implants.”

Now, here I am 4 years later and, although I have changed careers, I have my life back once again, and my hearing. You don’t know how much that means unless you were at the point I was when I blurted out my question.

4 years ago, I had no idea what my future would be like as a deaf person. Today I have graduated with high honors with an associate degree in accounting. I am pursuing a bachelor’s degree in the same major. I have 2 (or 3, I lose count) jobs. I get to spend time educating and mentoring others about advanced hearing solutions and I get to speak to groups of people that want to hear my story.

Giving a presentation
But most important, I have my life back.

If you have reached your tipping point with your own hearing loss (please don’t wait until it becomes a boiling point), explore your #WakeUpCall by clicking here

‘til next time


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

Views expressed here are my own. Consult your hearing health provider to determine if you are a candidate for Cochlear technology. Outcomes and results may vary.