Wednesday, May 25, 2016

Inadvertently terminal illness

Meniere's disease isn't fatal, terminal, or remotely deadly.

Or is it?

While the truth of the matter is that having this illness is not directly terminal, the aspects of the disease certainly make it dangerous, which means that it may contribute to untimely death.

In visiting with my parents recently, they mentioned a conversation they had with a random couple on a sidewalk in a small town. This couple began talking about a man who had recently passed away.

I don't know the man. Never heard of him, specifically, but I know the family name. The family is involved in the excavation business. Big excavation. They operate the large track hoe and bulldozer type of equipment. The business has been in existence for several years, possibly generations. Heavy equipment is part of the job.

The story goes something like this.

This man who passed had been suffering from vertigo for the last several years. The cause of the vertigo, I do not know. It really doesn't matter. Vertigo is vertigo. These bouts of vertigo caused numerous falls and injuries.

That's understandable. Vertigo will do that.

Combine that with the above mentioned heavy equipment and it brings things to a different light.

I, again, do not know the nature of the falls. Whether he fell into heavy equipment, or off from the equipment, I do not know. It again doesn't really matter. What matters is the fact that there was large equipment around increases the likelihood of serious injury.

It seems, according to the story, that he recently suffered yet another vertigo attack. The result was major trauma to the head and death.

He was 68.

The nature of the fatal fall isn't important. The fact that it happened is.

And while it is absolutely possible that simply falling in your own home could result in your death, the issue of having large equipment around only increases that chance, slight as it may be.

I'm not sure if this one fall was the cause or if it was a cumulative effect, similar to athletes succumbing to repeated concussions. The point remains the same. Falls and head trauma can kill.

While I would jump at the chance to re-enter my former career, it becomes a risk/reward scenario. I worked around large equipment with spinning power take off shafts at over 540 RPM. I've seen what they do to stuffed scarecrow types in safety demonstrations. Having an attack at the wrong time around one of those would be instantly deadly.

I worked around large animals. While cows have been domesticated for a very long time, they are still animals. First instinct in their flight or fight mentality is flight. This means stampede. No, they won't be thundering herds racing across miles of open plain, but 100 cows weighing 1400 lbs each can do enough damage in a few hundred feet of racing to kill a person. Simply falling suddenly, under the perfect conditions, may be enough to trigger that type of response. Again, the outcome would likely be death.

That's a lot of risk for the reward of being my own boss. Healthy, it's a no brainer. With a balance dysfunction, it also is a no brainer.

I often joke to people, when I am doing a bit more than they are comfortable seeing me do, that I'm insured.

The truth is, that may be tempting fate.

Just ask the guy from the story. Oh, wait, you can't.

Point taken.

'Til next time-and stay safe


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

Monday, May 9, 2016

Half way there

It's been a long haul.

Last fall I decided to go back to college to get (first) an associates degree in accounting. It's my way of fighting back against Meniere's disease. It may have taken my first love and career, but it's not taking my life.

This week concludes the first year of maybe 2 years in that process. I'm still hopeful that my life experience will be able to cut off some of the required coursework along the way, but if not, so be it.

I'll admit, I had some concerns going in to school after a long time out of the classroom. Not so much with my ability, but more with the general idea of being back in school at 50 years of age. Those have been dispelled. I can handle this, and, quite a relief, I have been nothing but encouraged by every person I have met while there. The professors have been great. I find an ease of talking to them I did not experience in my prior college life 32 years ago. Maybe it's because I'm older than most of them!

The classmates have been warm and accepting. I almost get the impression they appreciate the life experience I bring to the classes. I've found it easy to talk to many of them, despite our age differences. It's actually pretty cool.

The support staff at the college has been more than willing to get me any type of accommodation I need. In fact, the director of the disabilities services department has told me that if I ever run into a situation where I am not accommodated, I had better be in his office ASAP and it WOULD be fixed. Tech support has gone out of their way to find ways for me to use my assistive devices with my Cochlear implants. Any room, any time, I am to let them know and they will set it up for me to use. No questions asked.

To be honest, I could get by with just my processors in the vast majority of situations. My accessories are my "secret weapon" for my advantage.

Academically, I have done well. Ok, that is an understatement. I have thrived. Fall semester I attained a 4.0 GPA. I was invited to join Phi Theta Kappa, the oldest and most prestigious honor society for two year colleges. I have accepted. While the recognition is nice, the future benefits will be a good return on investment. If I decide to continue on for my bachelor of science, I get an automatic scholarship just for belonging to Phi Theta Kappa. There are more benefits beyond that.

While I write this, spring semester grades have not yet been posted, but as things stand, I will be very close to, if not actually achieving, a 4.0 GPA again. I've been blessed.

Along the way, the conversations I have had with staff and students have been equally important to the grades I have achieved.

They have given me the chance to educate about hearing loss. They have given me the chance to educate about Meniere's disease. They have given me the chance to be an advocate, and most surprising, an ear to others. For example, I have talked to at least two professors who also have hearing loss and feel the same stigma that I do. It seemed a relief for them that they were not alone in their hearing challenges. These have talked to me more about hearing loss than class content. I have talked to a tech support person who struggles with sudden hearing loss and trying to cope with hearing aids. The idea of Cochlear implants as a future option for him was a relief. This same man works with a fellow tech support person who has Meniere's. He understands where I am coming from and said they had even set up a "quiet room" for this employee to go if/when he has an attack at work. It's his personal recovery space that no one else uses.

All this has been done while attempting to maintain life at home and also working as a tax preparer from January through April. There were some late nights, and I felt them the next day. There were days where I felt the urge to just walk away. There have been days where I am not the most pleasant person to be around. There have been more than a few days where I felt that all I did was trade the stress of farming with Meniere's for the stress of school and work. But one thing that working 80 hours a week for 30+ years has taught me, you don't just walk away from the commitments you make, even if they are only with yourself. As the saying goes, "Get up, Dress up, Show up, and never give up."

Honestly, the biggest challenge to my ability to do this was the fear that I would not physically be able to handle it. I commute 35 minutes each way to school, 4 days a week. I have to sit in front of a computer screen for several hours a day. I know the way this disease works. It can hit you from out of nowhere. For this school year, it has left me alone. For that I'm more than thankful.

Overall, this has been a good, no really good experience. Here's to that continuing until I achieve my two year degree.............and beyond.

'Til next time


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

Monday, May 2, 2016

I've let us all down

I'm sorry. I've failed us.

It seems I have gotten comfortable not being upfront with talking about Meniere's disease with people I have just met.

Here's what I mean.

I recently attended a birthday party for a good friend. The big 5-0. As I was sitting at the table, eating, this couple sits down by me. I had never met them before. He started talking about farming. Being  farmer (former farmer), I was able to carry on a good conversation with him about the ins and outs of farming.

After some other people came and went, he asked if I farmed. I replied that I did for 31 years, until I went deaf. He did a double take because I had been talking to him. I couldn't be deaf, could I?

But that is where I failed us all.

I stopped at deaf. Why?

Truth is, being deaf is not the main reason I "retired" from farming. The list was actually pretty long. The list had more reasons to stop on it than reasons to continue. Going deaf was just one of the things on the list.

It was actually Meniere's disease, although deaf is part of this, that tipped the scales to hang it up. All the other things on the list I could have overcome. It would not have been easy, but who cares. That's what builds character, facing challenges and rising up to meet them head on.

Meniere's was the one thing, and more specifically, the vertigo and drop attacks, that I could not deal with right then. That was the final straw that broke this camel's back.

So why do I default to "I'm deaf?"

It's easier.

It's easier to explain deaf. I can even demonstrate that. Take off my "ears", and voila! I'm deaf!

You can't explain this other stuff. You can't explain that you have random vertigo attacks. You can't explain what a crisis of Tumarken is. You can try, but you really can't. Granted, sometimes you get "lucky" and the person has had vertigo, mainly BPPV, but you still miss the mark with them. They understand a few seconds of the room spinning. Some say that is was the worst thing they ever experienced in their life. Then drop the "I get it for up to 4 hours" on them and watch the jaws drop and the stares become blank. In the real world, that just can't happen! Or so they think.

Or maybe you can get that across to them, but then drop the bombshell on them that I have. "When mowing my lawn, it is not uncommon for me to stop, get off the riding mower, vomit, get back on and finish." Well, there is no way that I could be that nauseated by simply mowing the lawn!

Or maybe try this one. "While driving tractor the last spring I farmed, I had to stop in the middle of the field for 20 minutes before I was able to drive to edge of the field to get out and lie down." Nope. That's an airplane story. It went right over their head.

So, I take the easy way out far more often than the truth: I gave up my first career due to the unpredictability of Meniere's disease, NOT being deaf.

And for my failure to say that more often, I'm sorry.

"Til next time


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