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Invisible disabilities suck

Having a deaf day today and it’s driving me nuts. Had a meeting with my boss and I asked if I could send my team a web page with an explanation of Meniere’s disease (or syndrome as they are starting to call it) and she said no, I shouldn’t have to share my medical condition. Which leaves me with assholes thinking I’m faking when I hear sometimes and not others. Arggh!. Having an invisible condition is really annoying and frustrating. Having a disabilty that is episodic is worse. I feel sometimes I should wear a sign like lepers used to do and ring a bell so people know I have a disability that can’t be seen.

So many people have disabilities that don’t show, probably more than the ones that show and leaves you constantly having to explain why you can or cannot do something that TABs can do and not think about it. Our population is aging rapidly and there are going to be more and more people in my boat but until the TABs get with the program, if they ever do, I got to keep rowing my own.

The disabled employee group about a year ago did reach out and offer to help me work at home because most deaf employees do but after 9 weeks at home with the cat, I fear I’d go slowly insane even with all the conference calls. And they don’t always tell you when they make changes in procedures and if you aren’t there it’s easy to get an error. And going deaf is isolating enough without working at home.

Having a deaf day, meh!

I’m going deaf and I hate it. I have Meniere’s disease and everyone who has Meniere’s disease goes deaf. Allegedly you are better off at that point because you can get hearing devices. They don’t help before you go completely deaf. They’re just annoying because everything is loud. I can’t distinguish background from foreground noise, this confuses the hell out of people because if it’s completely quiet and nothing is interfering I can hear. So people get annoyed when sometimes I can hear them and sometimes I can’t.

There are a lot of people at work who don’t believe I have a hearing problem. That it’s an excuse to not have to be in the call center, it isn’t and lately the hearing is getting a lot worse for some reason.

The process has been at stasis for several years but lately, no, I’m having to accept I’m deafer. For a musician it can be torture. I can’t tune my guitar anymore and electronic tuners never feel right because while they may be more accurate to the pitch they are supposed to be they are not harmonized to the other strings correctly. I can still tell that.

Today it feels like I have a bathing cap on. I can hear but it’s muffled. Meniere’s disease causes the inner ear to fill up with fluid and every time it does more of the cilia in my ears die and I get deafer. Today my ears feel full like I’ve been in a pool too long. It makes your head feel heavy.

My sister and I now are walking to the Orange Line in the morning together now that she has a new job and she loves to walk ahead of me and still talk to me and I’m getting tired of yelling “What?” at her because she is facing away from me.

Deafness is isolating. You wonder what you are missing when you are in a crowd and can’t catch everything in the conversation. Sometimes I don’t go to things because it can be such hard work to try and keep up. It’s bad enough to be an introvert at a gathering let alone a slowly deafened one. I get exhausted. I loved getting out and going to Pagan Pride but I’m still tired from using all my energy trying to keep up. I made sure I was directly in front of Tagh at his workshop on Irish deities so I could follow his lips if I had to.

Deafness when people around you have known you as a hearing person is really hard because it’s invisible. Unless you are wearing an obvious hearing aid, no one knows you can’t hear unless you start signing at them and then if they don’t know sign language, it rewards you with a blank stare.

I will say I sleep better now most nights because I can’t hear our noisy neighbors on their balconies across the street. It’s the first summer I haven’t had to get up in the middle of the night and go across the street to tell someone to keep it down. There used to be a guy who would call home to the Old Country every Sunday morning at 3 or 4 am and I can’t tell if he’s still there because I can’t hear him. I still unfortunately can hear the asshat in number 4 who leaves at 5 to go surfing when he yells at his “bro” as they load the SUV under my bedroom window or his dumb blonde girlfriend who likes to make cell calls at 3 am that are totally inane. (She does it on the driveway where is echoes between the building and the wall on the driveway)

Today, like I said is a bad day, and to add to it I can hear the ringing in my ears which usually doesn’t bother me. Phooey rabbits!