Wednesday, September 23, 2015

The ultimate compliment: Part 1


Everything happens for a reason. I firmly believe that statement and I am confident that whatever does happen is for the best in the long run.  This has been made clear on several occasions in my life and seemingly more often in the past year since leaving farming on a full time basis.

I started writing mainly as a pressure relief valve in my life. The stress of the last three years, with the return of violent attacks and going deaf was a heavy burden, as was trying to operate the farm through the whole mess. I tried talk therapy and I don't know if I was really getting anywhere with that, and it was expensive, so I turned to writing as a way to release some pressure in my life. It started by joining Facebook following my 1st cochlear implant surgery. I needed something to do during the recovery from it. I had always joked to my wife about her being on "waste of time book" but I joined out of curiosity to see what all the hoopla was about. I did everything I probably shouldn't have. I shared too much too often. My posts were long drawn out explanations of what the recovery from surgery was like and what happened when I got activated. I am surprised the people I had as friends read as much as they did.

 I decided it was time to not share it in the realms of facebook, but put it in my own words in a different format, so I started to blog. I had no idea how many would read them, I didn't really care. It was a way for me to put down my thoughts and words to electronic paper and if I helped someone else, so be it. I was looking for a way to share what I knew, and sometimes, the frustrations I have due to Meniere's disease.

I have no formal writing training or experience. I just write. Apparently I write well.

As I have written and published these blog posts, more and more people have come on board to read them.

A few weeks ago I was asked if I would consider blogging for http://menieresresources.org/. I was shocked and a bit embarrassed. To think others felt I was worthy of such a position was humbling, to say the least.

While I was contemplating whether I should accept the invitation or not, I did something I had wanted to do for some time. I contacted a nationally syndicated newspaper columnist that I have admired for his wit and ability to make a person think in his columns, and asked his advice and shared this blog with him.  I thought if he responded at all I would be thrilled.  Much to my surprise, he replied very quickly to my email. Even more surprising were his comments to me and my blog/writing ability.  I expected, at best, a nice letter thanking me for appreciating his work. Instead I got what may be considered an ultimate compliment. The kind only given out by peers.

 "Dennis,
I’ve been reading your blog, and reading up on your illness.

You write well – clearly and with conviction.  Your writing does a good job of showing what cards you’ve been dealt and how you’ve chosen to handle them.  Kudos to you.

It’s easy to see why you’ve been asked to write on a regular basis."

That was pretty neat. And that was just the start of his letter. He then went on to give me some actual advice on the craft of writing.  He even suggested his favorite book on the art of writing, written, oddly enough, by horror novelist Stephen King, entitled "On Writing." I am looking forward to getting a chance to read that in the near future.

He also encouraged me to start a Facebook page as a home for my blogs. I now have that home, "My Life With Meniere's Disease " on Facebook. A link can be found on the sidebar of this blog, if reading it on an actual computer.

His graciousness didn't end, and he explained his experience as a professional writer.

In closing his letter to me he wrote,

"If you have specific questions, I may be of some use, but I can’t promise. What I can say for sure is that you have the two qualities that a writer needs.  

1.  You have something to say.
2. You are skilled at saying it."

These are words that I honestly never thought I would hear as a writer. It leaves an impression on me that will carry forward for a long time. I appreciate them, and certainly do not take them for granted.  One piece of advice that he gave me was to "get a little better each day" and I intend to do that, if at all possible.

The point I am trying to make isn't about glory for me. I am not that kind of person. It is to say that the old saying may well be true, "if life gives you a lemon, make lemonade."  Take a chance to do something you never envisioned yourself doing and you too may receive the ultimate compliment.

'Til next time

Dennis

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

PS  I did accept the invitation to blog for Meniere's Resources and I encourage you to check out the link in this blog to see what their organization does!

PPS check out the author that I contacted at https://www.facebook.com/Independently-Speaking-196312848918/timeline/

Thursday, September 17, 2015

Farming with a balance disorder

September 14-21 is Balance Awareness Week so I thought it would be fitting to tell you what it was like to be a farmer with a balance disorder.

In my early days of having Meneire's disease, I didn't have an everyday problem with balance. The disease was completely random, with attacks in clusters of 3-5 attacks for a week, then it would go away for varying lengths of time. During the absence of attacks, my hearing and balance would return to normal. There was always the underlying fear of the next attack, but life was pretty much normal.

During the attack phase it was much different.

The attacks would leave me on the ground lying in a fetal position hoping that the vertigo and nausea would be short lived.  I was, and am, one of the fortunate ones whose actual rotational vertigo only lasted a brief period of time. The longest actual rotational vertigo was 2 1/2 hours. Having read up on the disease from the very beginning I knew and feared the stories of rotational vertigo lasting in excess of 24 hours for some. I wondered how anyone could endure that.

The nausea was another story. It was common for me, even if the vertigo lasted less than a minute, to be nauseous, to the point of vomiting, for up to 12 hours. Walls became my friends. Without them I wouldn't be able to travel from point A to point B.

During the attacks, it was impossible for me to run equipment. The noise sensitivity, bouncing, and turning would have only sped up the removal of food from my stomach.  It was left to my father to cover for me in the beginning, and my wife and children later on.

Working with large animals wasn't pleasant either.

Later, as the damage progressed, I started to notice little things that had changed. I noticed that, even without an attack, it was becoming less enjoyable to bounce in a tractor. Skid steer loader work would make me nauseous. All the air ride seats in the world won't compensate for a vehicle without a suspension system.  The most telling time was spring of 2014. I was working a new piece of ground we had rented and needed to stop in the middle of the field for 20 minutes before I was able to drive to the edge of the field to quit. The bouncing had set off an incredible amount of nausea. The field was bouncing, not me.

And if the lighting was poor, the motion sickness feelings came easier. Part of having a balance disfunction is that you become much more reliant on your eyesght and feet/legs to mantain your balance. Low lighting, or no lighting, takes away another one of your senses, leaving you with just your feet and legs. That just doesn't work. It was, and still is, rather comical to watch me walk in the dark. The only time I am on the path is when I am crossing it. I look, and feel, like a stumbling drunk, and I don't drink!

Working cattle became, well, work.  I am very adept at handling large animals. If one wanted to be stubborn, I was able to use leverage to move them where I needed to. I wasn't rough, just persuasive.  As I started noticing changes this became harder. Most people, when they get jostled by a large animal, take 1 step to regain their balance. I took 4, and 3 of them were stumbling. The extra amount of energy it sapped was incredible. I got to the point of dreading having to work cattle. The laws of physics just weren't in my favor.  Moving one 1500 pound cow was a challenge. Doing that with 100 cows was exhausting. Add in the stress of knowing that you were going to be getting jostled, and you were no longer adept enough to out maneuver them, and it became something to endure, rather than necessary.

It was getting to the point of needing 10 hours of sleep a night just to be able to function the next day.

When I made the decision to leave farming it was part knowledge, part fear. The knowledge wasn't a conscious knowledge, more a feeling deep inside that told me it was the right decision. The fear was from a statement from my doctor. At one of my appointments, after they had determined that I had lost all balance function in my left ear, he said that if I lost the the balance function in my right ear as well, that I would "be able to function, but would likely be unstable." Who, at the age of 48 (at the time) wants to "function"?

The day the cows left I was in bed by 8 p.m. and woke up at 10 a.m. the next day. The second night was 12 hours, the third, 10.

Although I miss the cows nearly every day, I know that I wouldn't have been physically able to do it for much longer, and I get tired just thinking about getting cows back. I have no idea how I kept up the pace I was for as long as I did.

Life is too short to feel like vomiting all the time.

'Til next time

Dennis

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

Tuesday, September 8, 2015

Hearing loss? Blame the victim

I recently happened across a transcript from a specific broadcast of radio host Rush Limbaugh. I'm not here to debate his politics (or mine, for that matter). Nor am I here to promote his show. What I am here to do is to say that hearing loss affects ALL kinds of people and, regardless of who we are, we tend to be treated the same way. We get blamed for our hearing loss.

In this specific transcript, he had a caller ask him about his emotions about being deaf. (In case you were not aware, Rush lost his hearing very rapidly and now has bilateral cochlear implants). He related his story about his journey to deafness, how it affected his career as a radio personality, and some of his emotions.  What I want to dig into is one specific part of the transcript.

He had someone walk up to him on the golf course and ask him why it was that hearing loss is the only disability where the victim gets blamed. Rush asked him what he meant by that. The guy asked Rush if anyone ever got upset with him for not hearing.

We all know the answer to that! Of course they do! But why?

We don't go around getting upset that the blind can't see the pictures we are showing them. We don't lose our temper when the paralyzed don't get up and run. Yet, as a person who loses their hearing we get blamed. "You don't listen to me!" "Pay attention!" " I told you this already!" "Why didn't you answer my call?"

Why? Why is it that people who can't hear are expected to be completely responsible for their situation and how to remedy it? Doesn't anyone understand that it isn't because we didn't listen, but rather that we didn't hear them?

And I think that is exactly the point. They don't realize it. How can they? They can hear.

Hearing loss is different than these other disabilities because with the others, you know when you are missing something. With hearing loss, you don't. You can't know what you are missing when you don't know it's supposed to be there in the first place.  If a person talks to you and you don't respond, they think you are ignoring them or are upset with them.  If they are not directly in front of you, how are you supposed to know they are there in the first place? How can I ignore something I didn't know was there?

Hearing people can't understand that because they have no way to relate to it, so the immediate response is to assume you are ignoring or upset.

Being deaf isn't something you can experiment with, either. I suppose a little cotton in the ears may give some idea, but you generally can still hear something.  You can pretend to be blind or paralyzed. You really can't pretend to be completely deaf.

There is also no outward sign that we are deaf. We aren't missing ears. We don't carry around any type of equipment large enough for people to see.  Even hearing aid companies tend to not help in making our loss known.  The most important feature of most hearing aids is that they are "nearly invisible." This doesn't help.

So, what will help? Not being ashamed of our hearing loss. Being willing to talk and explain.  I know several others who have cochlear implants, such as myself. They have no shame and bling them out with stickers, jewelry, flowers, you name it. When I chose mine, I did get a color to match my hair, and the location of the coil doesn't always make them visible from the front. Maybe that was a mistake. Maybe I should have gotten a color that was noticeable. I do always have my wireless accessories in full view, and have people ask about them. One place you can look for ideas to show off your aids is skinit.com . This is a company that makes custom covers for hearing aids and cochlear implant processors. thehearclip.com is a place to purchase jewelery for your aids and processors.

It's time that those of us with hearing loss quit being ashamed of, and blamed for, our inability to hear.  It would be wonderful if we were the last generation to have people have to fight through the stigma associated with it. It's time we stand up and proudly say "I can't hear you. Please do something to help me understand. I want to understand, help me to do that!"

'Til next time

Dennis

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

Wednesday, September 2, 2015

Of things past and present (multi part)


Part 1: Farm boy fearless


Growing up on and working on our family farm was the only kind of life I ever would have wanted to live. I know not many will understand this, but I am a workaholic by nature, and farming fits that mentality. Sometimes to a fault.

When I was growing up, and reached the age where I was old enough to actually be of help on the farm, I couldn't wait to dig in and help. The more physical the job the more I loved it. As a teen we farmed with neighboring farms, everyone helping on each other's farm to get the work done.  We baled a LOT of hay. All of it packed into small 50 to 60 pound bales that had to be hand stacked in the barn. Every summer we did somewhere in the neighborhood of 30,000 of these small bales. My hands touched half of them.  There would be many times that the others helping would try to get me to take a break from stacking the hay bales and drive the tractor to get a load in from the field. I generally refused. I loved it in the hay mow. As you stacked the bales the pile grew higher and higher, reaching over 30 feet tall in some of the barns. Generally it was very warm as well. No need for a health club membership.

As the stacks grew taller you still needed to go out to the edge to start the next row. Often between loads one would sit on the edge and talk to the guys on the ground. 20 or more feet up, no safety gear. No fear.

As things changed on the farms, silos would be built and less hay bales would be made, instead opting for the hay to be "chopped" and put in the silos.  As the silos got full a person would need to climb them to tell the person unloading the wagon when to quit before overfilling things and plugging up the fill pipes. Unplugging was not a pleasant experience.

Some of these silos reached as tall as 75 feet. They would give you a very good view of what was going on around the neighborhood.  I loved climbing the outside of the silo and looking down at the person walking around the equipment on the ground. People look funny walking when viewed from straight above.  Sometimes I would climb them just for giggles to look around and have a quiet spot to think.

Enter Meniere's disease.

At the beginning of my journey with this disease my attacks were very frequent and severe and completely unpredictable.  The thought of having an attack while climbing, or on top of, the silos caused a fair amount of anxiety. Most of the time I begged off on doing it. The outcome from having a drop attack 60+ feet in the air would only mean severe injury, likely death. Given that fact, along with the fact that our silos were getting in need of some major repairs to keep them operating, the decision was made to tear them down. Things are safer on the ground.

The first time I noticed things had definitely changed had nothing to do with me being on a high place. I was actually watching a television program. I don't remember which one, but there was a scene where a character was running on a rooftop and jumped off. The camera followed him to the edge and panned down.  I grabbed the arms of the chair I was sitting in.

What the heck was that?

I have never had a fear of heights before!

Now I have trouble watching any show that involves heights.

I recently went to a cabin on a lake where there is about an 80 foot drop down to the lake. I couldn't get within 10 feet of the edge without that feeling of fear and apprehension overcoming me. Not a disabling fear, but one that makes a person force themselves to go on rather than just doing it.  It is not a comfortable feeling.

When needing to climb up into the hay mow I would climb some very scary looking wooden ladders, the kind that bounce up and down as you climb them.  Now I have trouble climbing higher than half way on an 8 foot step ladder without someone around to watch me. Poor balance stinks. Sometimes I just say to heck with it and climb to the top anyway, but it is not fun once I get back down.  I wouldn't even try to climb into a hay mow now.

To be continued at some point in the future..........

'Til next time

Dennis

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