Saturday, November 28, 2015

The bigger they are, the harder they fall

I have become very good friends with a fellow Menierian from another part of the country through the technology called the Internet. We chat nearly daily, so it has been a bit of a surprise when he was nearly silent today.

Tonight I found out why.

He has  been stuck in bed all day with vertigo and lack of balance. The only way he been able to get around is with the help of his son.

This beast doesn't care about who it chooses as a victim, or how big they are. It can drop anyone to the ground in misery.

I am not what people would call a small guy. I go about 6 feet tall and weigh around 210 pounds. I have been dropped like a sack of potatoes from this disease. Boom. Down for the count.  It is rather embarrassing when you are full grown man of my size and you are left to crawl on your hands and knees to get where you need to go, if you can move at all from the misery.

My friend?  He has told me he weighs in around 325 pounds. And yet there he is today, in need of having someone help him to get from point A to point B.

He mentioned yesterday that he was wondering if something was up. His hearing was just wildly fluctuating and was having some interesting sensations in his ear. Guess he was right in thinking things were not normal.

So what has he accomplished today?


And not throwing up.

That's it.

People may question the motives about a person with Meniere's disease, but until they experience the kind of violent vertigo we live with and in fear of, they will never really understand.

Until they witness it first hand, all people can do is either take your word for it, or doubt you. Those are the only options. So much for awareness.

My friend is case and point as to why no one understands completely. As Dr. Alec Salt, professor in the Department of Otolaryngology, Washington University, has stated:

 "I have always argued that if Meniere's patients walked around with one of their legs in a plaster cast, then there would be more funding for research of the disease, because the public would be more aware of the problem. As patients with Meniere's usually head to their beds, or to the bathroom, the symptoms of their condition are invisible to the public and the disease is therefore ignored." 

 So, to all who read this who don't quite understand what Meniere's disease means, I hope you never have to experience it and somehow come to an understanding of how debilitating this thing can be. To those who share my illness. I hope someday we are all able to get on with our lives, if not cured, at least by having some form of treatment available to help control it.

And to my friend, sleep it off, big guy. Tomorrow is another day. May you be back on your feet, ready to take on the world.

'Til next time


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

Thursday, November 19, 2015

Critical thinking, or just being critical?

Last night I attended a social function designed to open communication about the future of the region I live in and the opportunities coming due to a major expansion effort by one the the largest employers in the area. I'll admit, I am not a huge fan of these kinds of things. My opinion of meetings is that they are good way to waste a bunch of time.

Part of the function had the attendees gather into small groups and discuss a topic assigned to the group. The results were then reported to the group at large.

One of the groups that I sat in on was concerning the actual expansion and its effect on the community.  The facilitator seemed to have a preconceived idea about the direction he wanted to take this round table, which I found rather ironic.  He wanted to discuss critical thinking skills rather than the topic at hand, stating that when more than 1 person meets together politics become involved and that usually ended up with 1 person trying to control the direction of the meeting. (insert ironic chuckle here)

He asked a few questions concerning critical thinking and then I offered this commentary. It seems to me that rather than the lack of critical thinking being present, the way in which an idea is presented tends to sway the course of the discussion.

If you go to a meeting and an idea is presented as the only possible solution, the first thing that happens is push back from someone else.  How dare someone have the audacity to assume there is only one right way of doing things?!  The idea presented may very well have been the exact solution to the problem, but the mere fact that it was presented in a manner that did not allow for consensus to be reached brought about a confrontation that was neither needed nor desired.

This applies to more than political or business ideas.

Have you ever had a medical professional come across as so arrogant you could not accept what they were saying?  Even if it was the best solution for your medical issues? But what do we do? We find a different doctor who presents the exact same diagnosis and treatment, but does it in a nicer way.

Seems rather silly when we think about it.

How about family and friends? Ever ask one of them for their opinion and when they give it get upset because it isn't what we wanted to hear?

The same thing can happen when we talk about our illness.  All it takes to turn a simple conversation into a full blown confrontation is the change in the tone of ones voice.  In an instant, the person explaining their illness goes from seeking empathy and understanding to a whiny, complaining grade school child.

The person being told does the same as well. They turn from a confidant to an accuser, more than willing to lay blame at the feet of the chronic sufferer.

All because of a persons (poor) choice of words and how they are presented.


While we all are subject to fall into these same traps over and over again, it would be a good thing to stop at the first sign of this happening. Call a temporary timeout to have everyone involved gather their thoughts before continuing the conversation. And if the current situation can't be resolved at that very moment, walk away before it gets out of hand.  It is much easier to walk away and pick it up later than it is to attempt to right the wrongs that take place because you continued it into a full blown argument.

Trust me, I know.

'Til next time


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

Sunday, November 8, 2015

An Inadvertant Advocate

I never expected things to go this way. Honest. I thought my life was set. I was a farmer. It wasn't what I did, it was what I was. It was in my blood.

I felt that was all I needed in life, the ability to work hard. If I just did that, everything else would take care of itself. Anyone with an all consuming passion for something in life understands where I am coming from.  As long as I could do what I loved, nothing else mattered.

Even the first 18 years of this disease in my life didn't change that. Give me a chance to get through the misery and I was good to go. Very few probably knew what I was fighting with. And that was perfectly fine with me. I had things to accomplish. Goals to reach. It was all about my love for farming, and my cows.

I'm not even sure when it changed, but as time went on I felt as though I had a larger calling. I kept thinking there was more to my life than simply getting up early and working late.  I felt a need to affect other people's lives in a positive manner.  The feeling was strong, but I really had no idea what I was supposed to do about it.

Then 2013 hit.  A year that changed my life in so many ways. Some negative, and I have written about them in many of these blog posts. Some positive, which I have shared a few.

One of the most interesting and, honestly, most fulfilling ways my life has change has been because of the issues of Meniere's disease that resurfaced during that year.  The attacks came back, with vengeance. I went deaf in the second ear, as well.  I reached the point of exhaustion trying to keep my dream of farming alive.

So, what could possibly be positive about these things?

It forced me to confront them. Head-on.  I could no longer depend on being able to fight the affects off by myself anymore.  It was the realization that I was not on this journey alone, and that no matter how much I "wanted" things to be the way they used to be, they were forever changed.

It also led me to talk about things to my wife, to my family, to my doctors, to my friends.  It somehow made me into something I never  thought I would be: an advocate. Not so much for the effect of people giving of themselves to help me, more of an advocate for those who were dealing with the same issues I was going through. A shoulder for them to lean on and someone they could talk to. Someone to let others know that this is real, and affects more people than you realize.

And surprisingly, it feels pretty darn good!

I believe that many people with Meniere's disease are embarrassed by their symptoms. It's understandable. I know I was.  It takes a long time to get to the point of being able to say, "it is what it is." I am not there at times still today.  Sometimes I am still in denial.

And then somethings happen that you don't expect that make you realize what the purpose of having this may be: helping others deal with it as well.

I have written in the past that I do not wear this disease on my sleeve, and that is very true. I don't use it to gain attention for myself. At the same time, I no longer attempt to hide myself behind it either. And others have noticed. And that is a good thing.

I have had more than a few talks with people who share this illness, as well as their families.  It seems to be reassuring that they are not alone.

I also have not hidden the reason I went deaf from anyone.  It is important for people to know the why.  This has led me to be a mentor for several Meniere's sufferers that have also gone deaf.  Many of them come to me due to my Cochlear implants.  Some looking for hope, some for reassurance, some for guidance. And I have done my best to be honest and straight forward about my experience and what they should expect, if they decide to go down this road as well.

A few of these people have sought me out, others have been directed to me. To me that is a huge compliment. To have someone trust you so much to help others that they willingly direct others to you for guidance.  I have now spoken with 3 from Canada, several from the USA, 1 from the Philippines, and a couple from Europe. All this because we share so much, and have had the same concerns going forward.

I can only hope I have affected the people I have been in contact with in a positive way. That would make all of the misery that Meniere's disease can pile on a person worth something.

'Til next time


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