Learning to sing the blues

Jason
Jason
Jul 10, 2017 · 4 min read

I couldn’t think of a better way to explain the (mostly) mild irritations I go through on a regular basis. The fact is, there are very few people who maybe could understand what it’s like, and probably only one that knows what it’s like. Anyways, my goal in writing this is to:

  1. Help explain what I’m going through to people
  2. Try to find people who have gone through similar things and possibly create some sort of community

With that being said…

Ever wake up and hear voices coming from really far away, only to realize there are people talking right outside your bedroom door?

Ever go to start your car, only to not hear the engine come on?

Ever sit in a classroom, and struggle to hear the guy with a deep voice behind you ask the professor a question?

No? Ever know someone who has? No? Same…

How about, have you ever woken up one morning, ate breakfast, only to hear the refrigerator humming, then realize that the refrigerator always makes that noise but you just haven’t heard it in two weeks because your hearing has been down?

Ever listen to music with your headphones and think that it’s really cool how only one side plays bass, while the other side plays the guitar, only to realize a few weeks later when the same song comes on that both headphones are actually playing the exact same sounds?

Ever push your tragus (the flap in front of your ear lobe) down and notice the sound it makes? I never did, until I did it and didn’t hear the low rumble anymore. Better yet, ever notice the sound of touching your ear at all? Ever experience what it’s like to touch your ear and not hear anything? Then wake up in the middle of the night a few weeks later, accidentally hit your ear with your hand as you roll over with the pillow your holding, and then hear the noise of touching your ear again?

Ever have a hard time hearing the TV, but then a couple hours later (while still watching the same TV, on the same volume level, on the same channel) have the TV sound loud and clear?

Then there’s the ringing…

I haven’t heard complete silence in at least 18 months (December 2015). I probably never will again. I haven’t heard complete silence from one ear in at least 6 months. There are a lot of days where I hear 3 or 4 different sounds, all at once, coming from my ears. It changes almost daily, too, so I’m always aware of it, thinking about it, testing it… To be fair, most days I can distract myself or cover up the sounds with other things so it isn’t that bad, but it’s there.

Then there’s the scary part — the dizzy spells. I try not to think about these. It’s basically like getting the spins but your sober. If you’ve never had the spins, then imagine the world slowly spinning as you just sit there (and then after a while sometimes you violently throw up).

**Additional mental experiences***

Listening to an expert in this field (from Harvard, no less) tell you that your case is ‘at least two standard deviations from the mean’ and that ‘it is very possible both of your ears will [go functionally deaf]’ but that ‘you’ll always be able to be active. You might not be able to play tennis, but you can always use a rowing machine or something like that’.

Googling studies and learning about one study done that documented that people who have this condition have a worse quality of life rating than people who survive AIDS and other serious, life threatening conditions. In addition to that, reading stories of people on forums who have had this condition for 30+ years and are deaf and struggle to move because their balance function is almost completely destroyed. If you have the time, google oscillopsia and imagine being told that, at some point in your life, probably before the age of 55, there’s a decent chance you’ll experience that. Oh, also learning that this is probably what Van Gogh had and is why he cut off his ear

Managing symptoms. The only thing that has any potential to slow down the progression is eating a strict, 2000mg of sodium/day diet, limiting or cutting out caffeine, alcohol, and nicotine, and taking a diuretic. Eating almost exclusively salads in restaurants is obnoxious to say the least, but the fact that drinking a coffee or a beer can make my symptoms flair is a kick in the teeth.

Last but not least, uncertainty about the future. No one knows what will happen, and everyone who goes through this has an entirely different experience (if I had a dollar for every time I read “statistics are great for large populations, but almost useless for one individual case…”). I’ve asked myself things like: should I cancel my spotify account since there’s a good chance I’ll go deaf and there’s no point in putting time/money into music if I won’t be able to enjoy it in the future? Should I pass on my career in consulting and take a job that is less stress to try to save my health? How can I become fully financially independent as soon as possible so that I don’t have to worry about being a burden on someone else? Furthermore, I have (had?) dreams of going to a top business school, working in strategy consulting/corporate strategy, traveling the world. I don’t know if any of that will happen anymore. I refuse to say that it won’t, but I don’t have the confidence anymore that it will.

I see the carrot in the distance, but I’m racing someone for it and he can move a lot faster than I can if he chooses.

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