It seems silly to me that people still don’t know what Meniere’s is. I guess that is because it has become so central to my life these days. For the last couple of weeks I’ve toyed with writing several articles on various subjects, including some work on short fiction that I’d like to finish someday.
But for the entirety of these last few weeks my hearing has been burdened by painful tinnitus. So loud that I can’t even soothe the sound away with rainymood or any other white noise treatment. I have a hard time forcing coherent thoughts through a barrier of noise that impenetrable, much less the capacity for multiple readings necessary to weed out all the random keystrokes that slip in when you aren’t paying attention.
I wandered over to a fellow sufferer’s blog earlier today (thanks to my reddit habit) and noticed he had put a new entry up on it. For those of you who don’t know what Meniere’s is, I’ll post a short quote;
Symptomatically, most people experience “attacks” of violent rotational vertigo (feeling like the room is spinning), a feeling of fullness and pressure in the affected ear, loud ringing known as tinnitus, and progressive hearing loss. Many sufferers also report nausea, cognitive impairment (brain fog), fatigue, anxiety, and depression.
Meniere’s disease affects .2% of the population, roughly the same rate of incidence as Multiple Sclerosis. Yet virtually no one has ever heard of Meniere’s disease.
Here’s the bit that caught my attention. A study I’d never run across conducted in 2000. The sample size is on the small side, but it still represents a statistically valid group. The attention grabbing quote was this one;
“Meniere’s disease patients are among the most severely impaired non-hospitalized patients studied thus far … Patients describe impairment in travel, ambulation, work and other major social roles as well as trouble learning, remembering and thinking clearly.”
While this is clearly hyperbole from an unknown author (I can’t seem to track down the original article quoted) the dense jargon in the study backs up the statement. Quality of life is reduced below the levels of deathly ill cancer patients. Very few of my vertigo attacks didn’t include my begging everyone in earshot to please kill me. The sensations are intolerable, and yet you have to tolerate them. You cannot escape them. Had someone offered me an easy way to end it all while in a vertiginous state, I would have readily taken them up on it.
That is what Meniere’s is like on the bad days. On the good days I just kick myself for being unable to accomplish the simplest tasks because I’m lucky to remember my name from one minute to the next, like the last two weeks have been. There are days I forget. Mercifully, there are whole months that go by and I’m not forced to remember why I’m not working in architecture anymore. Looking forward to having a few of those days sometime in the hopefully not too distant future.
Back to the point. The point of writing this. Meniere’s awareness. At the bottom of the Mind Over Meniere’s post (I hate that blog name. Sorry. I’m sure mine is annoying to many as well) is a link to yet another Change.org petition. One amongst thousands. This one seems silly, but maybe it will have a genuine effect if Bono can be convinced to help raise Meniere’s awareness. Who knows? Couldn’t hurt to have someone say the word Meniere’s in front of a crowded audience. Surely someone will notice.
The song they’re asking him to announce in front of is Vertigo. It goes to show you how far out of music that I am; I don’t think I’ve even heard the song before. There was a day when I knew every artist on the charts. Knew who they were and what they sang. The last thing I remember U2 doing was Joshua Tree. Are they still a thing?
Anyway. Sign the petition if you are so inclined. Maybe it works, maybe it doesn’t. All I know is that I want this damn ear to stop ringing so I can organize a few thoughts.
2019. We have another famous musician who has contracted Meniere’s disease. Huey Lewis announced in 2018 that he was ending his current tour because of the effects of Meniere’s on his hearing. Here he is talking to the Today Show,
On Monday, Lewis spoke of when the disorder – which causes vertigo, ringing and hearing loss – first surfaced. “As I walked to the stage [in Dallas], it sounded like there was a jet engine going on,” he said. “I knew something was wrong. I couldn’t find pitch. Distorted. Nightmare. It’s cacophony.”RollingStone
Someone should get ahold of him and see if he is willing to be the poster child for Meniere’s. That is what we sufferers need. Someone to carry the torch of research for us.
January, 2020. Huey Lewis has decided to go back out on the road (archive.org link) I wish him luck, and he’s not the only popular act out there with a diagnosis (there is a female singer who has it too. I can’t remember her name. She’s the one who suggested elevating the head of the bed) that is still performing. When you have people paid to follow you around and assist you, it is amazing how well you can pretend to still be high-functioning.
He’s two years into his diagnosis. Let’s see how he talks about it after he realizes there is no return to normal. Not knows it. We all knew it, and if we think hard, we can remember what it was like to think “I can get past this.” When he realizes the cold hard truth of it. When he just can’t get out and do the thing that used to be easy for him.
That was me 12 years ago and more. I can bring those days to mind with some early posts on the blog. I was sure I could keep going, but I kept failing to fulfill the promises I made. Those dreams die hard.