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.

Tuesday, July 4, 2017

Powerful and Inspiring? ME?

Image result for powerful and inspiring images

Yeah, those are a couple of words I have heard tossed my direction lately. I really am at a loss on how to accept them.

As I close all of my posts, I'm just a guy. Really. I didn't start doing what I am doing because I am some narcissist. I keep doing it because people make the comments in the title. I started this whole adventure in blogging as a self-imposed therapy. I felt I had something to share: something to get off my chest and out of my head, so I wrote. I also picked up a few small speaking events, and volunteer and mentoring opportunities followed. None of this is by design.

But powerful and inspiring?

It really is tough to see myself as that. I am just sharing my story.

I recently had a chance to share that story in a college speech class I was forced to take in order to get into the college of business for my bachelors degree. I say forced because I intended to test out of this class. I felt I did not need to take an fundamentals of speech class. I am in my 50's, for heavens sake. But when I applied to the college for admittance, they replied I needed a letter grade on my transcript, not a pass/fail.

So I begrudgingly went, and I left with a much greater appreciation of the craft of public speaking. And an A.

The professor was amazing. The classmates were incredible. I actually am going to miss going there this week.

But the most touching thing I got out of this class was a comment following my persuasive speech. In this class, three classmates are assigned to be the official listeners to a speech and give feedback. The first comment nearly brought tears to my eyes.

"I have seen your speeches become so powerful in this class. You have taught us all so much about hearing loss. Keep doing this."

There it is. Powerful.

My goal was to educate while honing my speaking ability. To obviously move fellow students in this way is incredibly humbling.

Someone once asked me if I had any idea how many people my story has touched. I have no idea. It's just my story. I'm shocked people read it. Yet, so many times, I get a message or a comment how my story has been so inspiring to them and has encouraged them that there is life with this illness. It blows my mind. It also pushes me to continue.

I have never claimed to have the answers to living with this disease. I never will.

I am only here to keep telling my story to those that will listen.

Apparently that makes you powerful and inspiring.

'til next time


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

Thursday, May 18, 2017

Wow, I'm tired!

Image may contain: 1 person, standing, hat and outdoor

You may be wondering where I have been recently. Maybe not, either.

Well, I am going to tell you anyway. Life has gotten in the way of blogging.

As you can tell from the picture, I (almost) have finished up my Associates degree in Accounting. Almost, because I do have 2 general education courses to take this summer session to complete it, but I am close enough to done that the college allowed me to take part in commencement.

It's been a long two years and I will have been in school every month since August of 2015. I need a break.

I am happy with what I have accomplished and that I have been able to do this without interruption from Meniere's. When I started, that was the wild card, just like anything I start.

For 2 years I have basically put my life on hold while pursuing this degree. Two years of lots of hours to get homework done, reading done, and trips to the school. Maybe it's bragging, but I am proud of what I have accomplished. It has been a lot of work, and I was able to pull it off, graduating with high honors (over a 3.75 cumulative GPA).

While it has been a lot of work, it has been rather fun at the same time. Mental exercise is just as important as physical, and the confidence this coursework has given me has had a positive effect in my non-school life. I recently started a new part-time job in my field.

For now, part-time is fine. It gives me a chance to use my skills, give me some more experience, and prove myself to those around me. Part-time is all this place of employment had, but it also lends itself to flexibility. I still have more school ahead to complete my bachelors. I have a family. I have my tax season job. I also have Meniere's, and we know what that could mean at any time, although as time keeps moving, I am becoming more convinced that I have "burnt out". It's been a while, and I haven't missed it.

Along with all of this activity, I am still a volunteer for Cochlear Americas and have been doing as much as possible in the regard. Part of that is during the month of May they are sponsoring the #MillionEar challenge to raise awareness of hearing loss and advanced hearing solutions. The challenge isn't a lot of work and it is something we all can do. All it takes is to share a story, article, picture, etc. on social media and tag it with the #MillionEar hashtag and when they reach 2,000,000 hashtags, they donate money to 2 worthy charities in the USA. At last update, half way through May, they were at 1,083,000 and change. Join me, if you would like. You don't need to have Cochlear implants. It's all about awareness.

Now, if you'll excuse me, I have more homework to do.......

'til next time

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

Wednesday, April 19, 2017

Have you ever?

(disclaimer: This is a departure from my usual positive posts, not due my having issues currently, but rather to share that I have been there)

Have you ever spent a day holding on to the grass in your yard in an attempt to not get thrown off the planet?

Have you ever vomited so much for so long, it hurt to think about vomiting again?

Have you ever had the dim light of the daytime, shining though a blanket, scorch your eyes to tears?

Have ever squeezed your eyelids closed so tight your eyeballs hurt?

Have you ever had the sound of a light switch being turned off be painful?

Have you ever wished people would just leave you alone in your misery?

Have you ever lived in fear of something you have no control over?

Have you ever wondered, "why me?"

Have you ever wished for your old life back?

Have you ever lashed out at the ones closest to you because you didn't know what else to do?

Have you ever pushed on, in spite of being miserable, because you had no other option?

Have you ever begged to die?

I have.

'til next time


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

Tuesday, April 4, 2017

The Question
Last week at work I got "the question" from one of my co-workers. If you have read through my posts, you know I am currently on my way to an accounting degree.  I was asked "OK, so once you get your degree, are you staying on as a tax preparer here, or moving on?"

I don't blame the person. Her concerns are legitimate. Since I have come on, I have gotten some of the more challenging returns to do, and I have been marketed as the guy for business and partnership returns. These are both areas that this office never had the time for in the past. Having me on staff has made it possible to broaden the scope of the work done here. If I were to leave, it would put a crimp in the clients we have gained.

But there I something bigger at play in my life. While I openly admit I do not mind doing tax work and really have no immediate intention to leave, it is not full time.

Thus, I had no other answer for her than this. "I really am not in the position to say what my future holds. I am living my life day by day at this point. While I see potential for growth here and am not opposed to being part of the growth, if someone were to offer me an opportunity that is completely unexpected and would be foolish to not accept, I have no other option than to look at it. But for right now, I am not looking any further than getting my Associates degree in May and concerning myself with getting my bachelors, starting this fall."

I'm not sure it comforted her much.

Later that day, I had a chance to visit with a teacher at my son's school. She sort of asked me the same question. I gave her basically the same answer. I really do not know where my future is, but I expanded on it a bit. I also have to concern myself with the stress level I place myself in. A job offer I can't refuse may be one I need to refuse because, as I said to this teacher, I have been very blessed to not find myself lying on the ground with vertigo, vomiting all over for the last 3 years. I have no interest in going back there.

I'm not positive that would happen, but I really have no desire to risk it.

The night before these conversations, I had another with a woman about my being deaf in a small town. Options are limited if you can't hear anything. The resources just don't exist in a small town. If it were not for my Cochlear implants, I really have no idea what my life would be and I do know that if I did not have them, I would not be on this journey to a college degree. It is that simple.

If I weren't open to using this gift to the best of my ability for the best of my family and community at large, it really would have been pointless to even embark on the road to hearing and college.

Over simplistic? Maybe. The truth? Yes. If I were deaf, and not using CI's, my life would be much more difficult.

To be completely honest, if it were not for my Cochlear implants and the lack of attacks, I wouldn't even be able to be asked the question.

'til next time


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

Saturday, March 18, 2017

Is this the future?

While I am on the subject of my recent adventures at Celebration!, I feel the need to put a little hope out there for those of us that have had the "privilege" of having Meniere's disease steal, not only our hearing, but also a good portion, if not all, of our natural, inner ear balance function.

One of the sessions I attended was about what was coming in the future for Cochlear brand implants.

Naturally, the main thrust of the presentation was about the hearing aspects of implant technology. To be honest, some of the glimpses are pretty darn cool. Things like direct connect to IPhone with a phone app to control your processor. Or smaller, lighter processors. Or giving a recipient the ability to have their processor mapped without traveling to their audiologist. All the way to the current holy grail of implant technology, the thing affectionately code named TICI. The Totally Implanted Cochlear Implant. Yup, completely inside your head. No one would even know you have one.

Granted, the presenter (a man in charge of many of these projects- direct from Corporate headquarters in Sydney) would not, and really could not, give any kind of timeline for any of these coming out, the fact that they were mentioned means they are on the way. Sometime.

What he could say with certainty is that the N7, N8, and N9 behind the ear processors are all under development as he was speaking, as were the Kanso 2, Kanso 3, and Kanso 4. They need to be. Technology moves so fast that the rate that new, more powerful and complex processors hit development needs to be never ending.

But you know that we ( Meniere's patients) have a bigger, or additional concern: Our balance.

To tie this all together, after the presenter was done with his session, he took some questions and, of course, all of them pertained to hearing. Since the time was up for that session, I hung around for a few minutes to get a chance to talk with him. The first thing I told him was that my question was going to take him on a totally different direction from all of the other questions he had taken. I then explained why I was deaf and asked him if there was any actual research going on in the field of Vestibular implants. He replied there absolutely was, and referred me to some early work that had taken place in the state of Washington. He also mentioned that one of the presenters of a different session, Dr. Blake Papsin, was working with Cochlear Ltd in research on a vestibular implant. He mentioned that there were some significant hurdles to clear in getting one to the commercial point and that VI's were at the stage where Cochlear implants were 30 years ago.

30 years ago, CI's were in the trial stage, or just hitting the market and the long term success was unknown. That seems like an eternity, but in the world of electronics, that is a very short trip. If VI's are able to leapfrog forward due to the knowledge from CI's, development could be rapid. Or it could hit a wall.

When I thanked him for his time, I off handedly said, "I appreciate the information, even though I probably won't see any benefit in my lifetime."

"Don't rule that out", he replied

In case you were not aware, there are trials going on for a vestibular implant to replace person's missing natural balance system. Here is a link to one of the studies

'til next time


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

Sunday, March 12, 2017

It's a Small, Small World

My first trip to Disney World in Orlando, Florida, happened when I was a junior in High School. My oldest sister's first teaching job out of college was in Jacksonville, FL and my parents decided to take the family to visit her over labor day weekend, if memory serves my correctly.

Of course, when you travel like this, and we did it rarely, you needed to hit the sights, so we drove from Jacksonville down to Orlando in a rented station wagon.

Again, if memory serves correctly, the only ride that we took while there was "It's a small world". I have no recollection of how long it took to get through the ride, but I know it took a long time for the song to get out of my head after we left Disney, and Florida. It's one of those earworms that hangs on in your head forever.

My apologies for giving you that earworm. I know I did.

This post isn't about earworms, though. It is about how small of a world we live in. In our everyday lives, we really live in a small world. Chance encounters with people we have never met before, but that have some connection to us or where we live or grew up prove that point. Then when you add in the fact that some have chronic illnesses, or some other limiting thing in our life, the world becomes even smaller. And really, in unexpected ways.

The third weekend in February, I spent 5 days in Orlando, at a Disney resort, for Cochlear Americas Celebration! 2017. While there, those of us with Cochlear implants, or baha technology, have the chance to get our processors "cleaned and checked" by a team of professionals within the Cochlear organization. This is a free service that they offer at all Celebrations. It gives them a chance to look at your equipment and recommend, if they can't do it on site, maintenance on your processor.

As  I did 2 years ago at Celebration, I signed up for the clean and check. This time with two processors that I use every day and two backups. They were also demonstrating their newest processor for those that wanted to test drive it. I did not. Mine are new enough that I am very satisfied with what I have, and I am a few years from being eligible for an upgrade to a new processor.

When it was my turn to go in to the clean & check room, they directed me to a table with one of Cochlear Americas clinical audiologists. I gave her the first CI processor and she started looking it over. She asked me when I was implanted. Then where. When I told her, Mayo Clinic-Rochester, MN, She stopped what she was doing and said "My dad started the cochlear implant program at Mayo!"

I said, yeah, Dr. #####! And I looked at her name tag. Same last name. But here is where it gets to be a small world. Although her father started the CI program, he did not do my implants. He had long since retired. But, what he did do was diagnose, and treat, my Meniere's disease! 24 1/2 years after being diagnosed with Meniere's disease, the disease that would steal my hearing, I am sitting there having my Cochlear implant processors cleaned and checked by the daughter of the man that diagnosed me!

It is a small, small world!

Especially in the world of audiology and Meniere's disease.

'til next time


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

Sunday, March 5, 2017

Definitely not how this year was planned

Hard to believe that the first quarter of 2017 is almost over. When the new year starts, many people partake in the making of New Year's resolutions. Mine certainly would not have looked like what has happened so far, if I would have made any.

Most of the these resolutions are made in an effort to improve one's life over the next year. Things like lose weight, stop smoking, stop drinking, find a mate, get married, etc. None of them involve a 6 day stay in a hospital. Yet that is where I found myself the month of January.

It becomes easy to not take care of yourself over time and then find yourself in need of a medical re-boot. It also is quite likely that a person will experience something that they never saw coming. And that is exactly what happened with me.

Now, I 'm pretty confident that you are thinking this has to do with the loveliness of Meniere's, but it doesn't. But it does have to do with my life, and really, the fact I am still living.

As usually happens in winter, there are bugs that go around. Some worse than others. I thought I had one at the beginning of January. Cough, chills, tired. It had to be a virus, so I blew it off. It will pass.

As this winter had been progressing, Tuesday had become the day of the week for winter weather. This year was more ice than snow, but if it came, it was on a Tuesday. Tuesday, January 10th was no exception with a round of freezing rain. As has happened more times than I care to count, my wife ended up staying at work and pulling extra shifts. I guess it is better than having to be concerned about her driving home on the ice. Staying safe is a good option. It also gives the road crews a chance to get out and clear or sand the roads to make travel safe. Since our driveway is a bit, well, quite a bit, of a slope, I figure I should get out and sand it before she headed home so she could get home.

So out I went and I grabbed a bag of barn lime to sand the drive. As I carried the 50 pound bag, I developed intense tightness in my chest and by the time I got to where I needed to sand, it felt like the bag was on my chest after I set it on the ground. Then I started coughing. Remember the virus thing? It had to be a virus, so I continued to sand. When I finished, I broke into a sweat and was extremely tired.

The next morning I couldn't breathe after getting dressed and decided a trip to the Dr. was in order to confirm the virus thing, or maybe bronchitis, or at worst, pneumonia. My primary care thought otherwise and ordered a full work-up of my heart. Everything came back negative until the very last test. This was a test to see if I was at risk for blood clots in the lungs.

Are you kidding me? Blood clots in my lungs?

After the radiologist confirmed that was indeed what was going on, I found myself a resident of the local hospital for the next 6 days, and I find myself on blood thinners for six months, minimum.

Being the information junkie I am, I looked up pulmonary embolisms and was greeted with the statement that 33% do not survive without immediate medical attention. I waited 24 hours. Talk about a reality check.

As the week in the hospital went on, I learned more about the clots. They seemed to have started in my calf. I thought I had a cramp, I guess it was the clots. I didn't just have one clot in one lung, I had several in both lungs, and they were pretty big. On my follow up with my primary, I got a big hug and was told I should be grateful I was still here.

Trust me, I am. Yet at the same time, I never really felt as though I was in a life threatening situation. I kept up on all of my homework for school while recuperating, I started working immediately after release. Really, other than being told I had them, and the one day I had trouble breathing, I did not feel like anything was wrong.

After release, my next concern was a trip I had planned to Cochlear Americas Celebration! 2017 in Orlando. I had resolved that if I got medical clearance, I would go and have a blast, but if I could not go, that was the way it was. My health was more important. Thankfully, I was cleared to travel. And I did have a blast. This was my second Celebration, and it was much more relaxed for me.

The thing about these gatherings of 1000 or so people who have benefited from Cochlear implant technology, is that you laugh until your face hurts, then you meet someone new and hear their story and cry with them, both tears of joy and tears of empathy. Then you laugh with them until your face hurts. It is an emotional 3 days surrounded by people who become your lifelong friends, and by staff that are more than employees for the manufacturer, but also friends.

And this, finally, leads to the picture. On the last day of the Celebration, at the closing session, they honor a few of the recipients from the previous year. This year they awarded 8 young ladies scholarships. They awarded a couple with the Lifetime Volunteer Achievement award, and they awarded me with the volunteer of the year award.

Not in my wildest dreams would I have ever thought 2017 would start out like this.

I'm thankful I am here to see it, and how the rest of 2017 goes.

'til next time


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

Saturday, February 11, 2017

It's not about me

That's how it ended. An explanation of why I was standing before a group of 30 people on February 9th. It's not about me.

This is a post that has been 4 years in the making. Well, really, this may have been the whole plan from the time I first was diagnosed with Meniere's disease. 

I am a person that strongly believes that there is a plan for everyone's life. I really believe that the more you fight this plan, the harder your life will be. Don't get me wrong, I have had a great life. At the same time, I believe that trials and struggles in your life serve a greater purpose. The purpose may not be visible to you at the time, but it is there.

And the plans for your life may change over time. In reality, there are very few people that have a plan or goal for their life and that is the only plan they get to live out.

Life happens.

That doesn't mean we readily embrace the changes in our plan. Many spend way too much time fighting the change. That makes for a miserable existence.

I will be the first to admit I am not thrilled that I have this disease, or that I went deaf from it, or that I decided to go a different direction in life. I miss the old me. Yet there has been so many blessings that have come from it. Yes, really.

The biggest change that has happened is what has become my passion. It used to be farming. Dairy farming specifically. I loved and lived for my cows. But something changed and it has been for my benefit.

If you've followed me for any length of time, you know I am very outspoken about the benefits I have had because of getting my Cochlear brand cochlear implants. Reaching out to people has become somewhat of a passion of mine. It's easy to understand why. In June of 2013, I thought my future was nothing more than silence, except for the horrid ringing in my ears. Here I was, 48 years old, and no means of communication. I didn't, and still don't, know sign language. Why would I? I had been hearing, albeit only in one ear for 18 years, but I had normal hearing in the other. I had no use for, or knowledge of, anything related to being deaf. Yet there I was, sitting in the doctors exam room asking him if there was anything that could be done for my hearing loss.

And that is when it all changed. I was hoping for an excuse to tell people to bug off when they insisted that I get hearing aids. I knew they wouldn't work, and I was looking for validation. Instead I got my hearing back. And a big part of my life.

Since that time, I have made it a mini mission to attempt to explain what I have gone through. Not so I can receive any puffed up ego, but rather to educate and empathize.

The ability to use what I have experienced by volunteering my time has opened so many doors. Some for me, many for others.

Last summer I was invited to be part of a campaign to raise awareness of advanced solutions for hearing loss. Yeah, that means Cochlear implants. But here is the catch. I cannot talk about my success with them without talking about why I needed them in the first place. So really, I am a two for one advocate. I have even been chided to "not talk about Meniere's disease so much." But that is simply not possible. It is my whole reason for being here in the first place. If I don't have Meniere's, I don't have Cochlear implants.

What I have found interesting is the fact that people find my story interesting. To me, it's just my life, yet whenever I share why I have CI's, people are just struck with such an interest.

This whole back story leads to this point. Because I have Meniere's, I have CI's. Because I have CI's, people are interested in my story. Because I tell my story, people learn about Meniere's disease.

And this leads me to February 9th.

Because I had the opportunity to share my story in a magazine seen only by a group of people who are part of an international organization last summer, I also had the privilege of sharing my story in person with a local chapter of Sertoma International.

Yet I wasn't there because I need the gratification of being seen and heard in public. I was there to thank them. To thank them for their support for hearing loss awareness and financial assistance to those that could use it.

But it also gave me the opportunity to educate them on one of the many ways that a person can lose their hearing. It gave me the chance to tell them, in person, that what they are doing as an organization reaches far more people than they realize. And to share with them that everything we, both myself and Sertoma, does is for the benefit of others.

I have my hearing back. Well, at least while I wear the processors. If this was an ego trip for me, why would I put myself out there to nearly anyone that reaches out? Why would I care that others find hope in my story? I would just go back to my life and push to be my old self again, living only for me.

But this isn't about me. It's about everyone that my story touches.

'til next time


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

Wednesday, January 11, 2017

Time to get fired up!

Two things in life are certain. I'm not planning on the first one in the quote anytime soon, but for the second, I am gearing up for year number three of this wild adventure.

Ok, maybe not wild, but definitely an adventure.

When I left farming nearly three years ago, I had no idea what was going to come my way. I was coming out of the worst 12 month period with Meniere's disease I had experienced. I found out that my left ear had been rendered completely useless, no balance, no hearing. I went deaf in my right ear. My right ear was classified as "abnormal" for balance function. My ENT told me that if I lost balance function in my right ear, I would be able to function, but likely wouldn't be stable. I thought my life would be a life of hissing and ringing, but otherwise silence.

To paraphrase a quote from years ago, "I've come a long way, baby."

Make no mistake, I still live with the remnants of this disease. I'm still deaf. Some days avoiding walls is the goal. I still get the mild Meniere's hangover and brain fog. My ears still ring.

But I've moved on.

Three years ago, on a whim, and because I was tired of doing nothing, I sat down with a good friend and, rather than a job interview, I poured out my story. I knew he was possibly looking for a tax return preparer to train to replace someone in the office that may be retiring soon.

I had one Cochlear implant. I did well with it in what I had experienced, but customer interaction was a whole new game. All those different voices. High pitched, low pitched, mumblers, all of it. I had no idea if I could or would be able to hear them well enough to do this.

As for the tax returns, I had less concern, but it was still new.

So we talked. And talked. And talked. And I was given the chance to try. He didn't even care how many returns I did that year. He didn't care if I had attacks in the office. He would get me somewhere dark and quiet, even if he had to physically help me. It was all about me trying to see if this would work, even part time.

And try I did. And succeeded. So much so that the other preparers started asking me questions about doing returns!

Sure there were bumps. The first year I did not do well on the phone. So poorly that the receptionist stood next to me, on the phone, and told me what the person on the other end of the call said or asked, and then relayed the information to them for me. Cumbersome, but it worked.  There were people I had trouble understanding. My fellow preparers would come over and help me.

But it worked. So well, that part way through the year I was asked to consider doing bookkeeping for the firm for clients.

I must say that things improved incredibly when I received my second Cochlear implant. Along with that implant came accessories that allow me to use the phone via Bluetooth, even landlines, and a microphone that I can give clients to put their voice directly in my "ears".

Fast forward three years and I find myself being given more and more responsibility in the tax office. I'm being marketed as the guy in the office to deal with business and corporate returns (something they had not been doing due to lack of time and personnel willing to do them), and the guy to talk to for accounting questions.

I will be completing my first leg of the journey toward having meaningful letters behind my name. This spring, an associates degree in accounting. Next fall, leg 2 begins. Enrollment in the bachelors program for accounting. In between, possibly certifications in accounting software, maybe tax specialist designation. Who knows?

A couple weeks ago I ran into the CPA that we used when farming. I visited with him at length when making the decision to leave the farm career behind. He said he had thought about me last spring and wondered what and how I was doing. When he heard that I was pursuing a career in accounting, he said he thought it was "perfect". How is that for a boost?

As long as I refuse to let this disease defeat me, and the attacks stay away, I have a life to live!

Bring it!

'til next time


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