Sunday, October 29, 2017

'round and 'round we go

reddit.com
"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

Dennis

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

Sunday, October 15, 2017

Stop fooling yourself

geoffreyprince.com
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

Dennis

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