Kind of Hush…

It started in 1998. My life changed. I woke up several days in a row and just felt different, strange. Couldn’t put my finger on anything specific. Not physically sick, but I felt weird, especially my head. Head felt full and crowded. Not the typical spot people usually insinuate where I’m full of it. Went to see my family doctor. She found nothing wrong. She referred to a local eye, ear, nose, throat specialist, Dr. Fox. After some tests, he concluded I was suffering from a temporary or permanent hearing loss in my left ear. He wanted me to try some prescription steroids. Sometimes massive doses of steroids will kick start a nerve that’s gone off the reservation in your ear. You start gradually, increasing the steroid amount per day, then decrease just as slowly. So this wasn’t a quick fix. Took a couple months before I was done taking them. Unfortunately there was no change. Notice how well my hearing is in this picture.


Me and Shannon, 1992. Perfect divinity!!!

Just as troubling as the apparently now permanent hearing loss, was all the noise in my head. You’d think if you’re going deaf, there would just be silence. Not so. I have constant, distracting noises that nearly drive me to drink. Especially at night when I’m trying to fall asleep. If I really listen to all the noise when it’s totally quiet, I’m sometimes surprised that I don’t go insane. The doctor explained this is my brain’s way of compensating for stuff it no longer hears. My brain makes noise of its own for me. One side of my head sounds like the “snow sound” of a TV station that’s off the air. The other side varies between a chain saw that never lets up or a dentist’s high pitched drill. Look, it’s dueling brain noises! Thanks dipstick brain. If there was a nerve that would sever the constant noise in my head, I would have surgery today. No scratch that. Would have happily insisted that be done at least 10 years ago. There’s not. Doc suggested trying some white noise. Turn on a fan when we go to bed and see if that helps. It did a little.

I got a summons for jury duty. As I was filling out the questionnaire to send back I wondered what would happen if I was seated on a jury. If I were on the left of a witness testifying, and it happened to be a child or someone soft spoken. Would I be able to hear and understand what they were saying? Called Dr. Fox’s office for advice. The nurse said they would write a letter that I should include with the paper work when I sent it in. I could pick up the letter at his office the next day. The letter was in an envelope but wasn’t sealed. So I read it when I got back in my car. “Please excuse Denise from jury duty. She suffers from a profound hearing loss in her left ear.” I was stunned. Sat in my car and just sobbed. “Profound.” It was seeing the word profound.

There was no explanation of what was causing my hearing loss. No illness, accident or blow to my head. None of my family was deaf. My Mom’s hearing was exceptional. (Honestly she could hear me talk about her when I was in Michigan and she was in Iowa.) About 25% of the people who suffer a hearing loss just wake up one morning not being able to hear like they did the day before. I had worked for McDonald’s for 6 years, and often wondered if that environment contributed. I worked in the kitchen with very loud exhaust fans, grills, ovens. People yelling special grill requests. It was noisy. Doesn’t really matter. What did matter, now after a couple of years my hearing had steadily gotten worse.

Dr. Fox decided it was time to see an ear specialist. Sent me to a fabulous guy. Dr. Daniels practicing in Grand Rapids, about 45 miles away. Since my hearing loss was only in one ear, he thought a special hearing aid would benefit me a lot. It had a tiny microphone going from my (good) right ear, sending the sound to the hearing aid in my left (bad) ear. This only works if the hearing in one ear is really good, and mine was. He also discovered a couple other problems with my head. (Yeah I bet John could have easily filled him in on a few things in that department without charging a couple hundred bucks.) I had an MRI to rule out a somewhat common problem associated with a sudden hearing loss. A tumor behind your ear. Nope, no tumor. Thanks God. He did find an Easter egg sized cyst in my head near my ear, but assured me it was not the cause of my hearing loss and not to worry about it. Not so sure about that one Doc.


Easter egg size cyst? Yikes…


The other issue I was experiencing was dizziness and a balance problem. Couldn’t look up or down quickly, climb a ladder or walk up and down stairs without hanging onto a railing. When I laid down, the room would spin out of control. (Nope I was stone cold sober). And my eyes would do the weirdest thing. Either opened or closed, but usually closed, they flutter underneath my eyelids in an uncontrolled, rhythmic cadence. Makes me feel like I’m going to vomit. If you hold the edge of pages of a book and let them fly through your fingers fast, that’s the movement of my eyeballs. So sickeningly gross. I have to raise my head quick so it’s not down flat for several seconds, until that icky moving stuff stops. Often happens when I’m changing positions while sleeping during the night. Nasty thing to wake up to. The name of this new phenomenon now part of my life is called Meniere’s Disease. It affects my hearing and balance with vertigo and tinnitus (that’s dizziness and weird noises in my head which have nothing to do with my warped personality or those odd voices) I’m lucky, my case is mild. There are people with Meniere’s who vomit for 12 hours straight when they have an episode. I take a diuretic that helps stabilize my fluid in my inner ear, limit my salt intake (easy one for me) and have gone caffeine free.

My hearing loss started affecting different facets of my life I didn’t even realize. Darkness now freaked me out. I’m sure this is caused by my balance issue. Soon I had night lights all over the house making me feel more sure of myself and my wobbly balance. I have listened to music as soon as I start the car since I was 16. Not anymore. Now the radio makes me edgy and distracted. John and I were unable to watch TV together. The volume I required made his hair fly backwards as though he had just weathered a bad storm without an umbrella. It was also going to cause him to go deaf soon. He bought me a set of wireless headphones for the TV. He listens at normal range, while I pump up the volume on my headphones.

The only way I can enjoy a movie at a theater is through headphones. And I still miss a lot of dialogue. Some of this is not my fault though. Dang movies have such loud background music, even during quiet dialogue. Although I can hear they’re speaking words, it’s all muddled gobbledy-gook which I can’t decipher. Can’t spend big bucks on certain venue tickets unless they have headphones for the hearing impaired. Not for concerts like Lady Gaga, or P!nk. (Yes I’ve attended both in the last few years. Next up is Maroon 5) I actually take out my hearing aid for those. But then I’m unable to carry on a conversation with anyone around me for the whole night. When we attended “Book of Mormon” in Detroit with Josh and Erica, Josh had reserved headphones for me well in advance. Thanks Josh, you’re the best.

Soon I started missing stuff again. Blamed the TV, headphones, John talking too soft, and the movie theater but John insisted, “sorry honey, it’s you.” Back to Dr. Daniels. Discovered since I had seen him a couple years before, I’d lost another huge chunk of my hearing. No wonder I couldn’t hear the “white noise fan” anymore. Now get this. John got so used to the fan, he can’t sleep without it. The hard part for me to accept this time was the hearing loss was in my “good” right ear. Now my type of hearing aid was a hindrance. “Forget about your left ear, it’s hopeless. Let’s concentrate on your better ear,” Dr. Daniels encouraged.

Honestly I was about to give up Parish Visiting. Missing a lot of the conversations. Typically the elderly are a pretty soft spoken bunch. One guy was always kind of nervous and had a habit of flitting his hands around his mouth. Never realized before that I was (unconsciously) starting to read lips. Except his of course. Dude put your hands down. The grandkids are hard for me to understand. Anyone who doesn’t move their lips very much when talking around me is literally falling on deaf ears. Same thing goes if you turn away from me and continue to talk. Adam is much harder for me to understand than Josh. His voice is a little deeper, so I miss a lot of what he says. End up saying “what” 50 times. Frustrating and maddening for both of us. Never thought I’d say this but I now hate talking on the phone. I mostly text with the kids.

Every day I lose more hearing the smaller my world gets. Already a loner, I’m becoming much more isolated. This is not a good thing for me. If something’s gonna shrink it should be me, not my little world. While there’s nothing that gives me more pleasure than having the family around, if 4 or more of them are in a room together, I usually just keep walking until I find a quiet place. Can’t keep up with noisy conversations, so I end up not contributing at all, or answering inappropriately. I do that a lot. Adding my 2 cents worth, then look at everyone’s confused reactions. OK so I might have misunderstood what was said a minute ago. Restaurants are miserable for me. So much background noise that I can’t concentrate on the conversation in front of my face. Being deaf is probably the biggest reason I enjoy writing. I write my part of the conversation, then wait for the rest of you to join in with your comments. Don’t get me wrong, I’m very blessed. I haven’t experienced any major crippling health issues yet. No cancer, ALS, MS, Arthritis or Alzheimer’s. All my internal organs are still playing the right notes so far. A brain hiccup now and then, but that too seems to function at somewhat a normal level for me. (Here’s my funky “zebra” hearing aid. Much more important than my credit card. I truly never leave home without it).



I’ve had this hearing aid almost 4 years now. My hearing hasn’t continued its fast decline, just a much slower, steady pace. So far I’ve lost about 2/3 of my hearing in my left ear and 1/3 in my right. Still scary. Dr. Daniels says if it gets much worse, a choclear ear implant is about the only thing that would keep me connected to the hearing world. Then instead of sound waves traveling through the air into my mostly deaf ears, it would be bouncing off my skull bones in the back of my head. After this devastating news I was feeling kind of low on my trip back home from GR. OK really, I was in a funk and wallowing in self-pity. Almost home and still crying, I turned west on Ruddiman for the last 2 miles before our house. It was mid-December about 5 pm. God was trying to get my attention by sending me a not so subtle message. Right smack-dab in front of me was one of the most beautiful, magnificent sunsets I’ve ever seen. Wow. Would if it was my sight I was losing instead of my hearing? No more sunsets, driving, reading, canning, baking, or daily walks without significant changes in my life style. Denise, for heaven’s sake, pull up your big girl panties, and thank the Almighty you’re still capable and able to do so many things. Enjoy and appreciate your wonderful life. Yeah, that was an “ah-ha” moment for me. Thanks God, Sorry, I can be really dense sometimes…



 

 

 

 

 

 

 

 

One thought on “Kind of Hush…

  1. Don't laugh but I hate, hate, HATE, being bald . Why me? Well, why complain?On the treadmill at the Rehab Gym, the mirror gives me a clear view of this young man walking through time and time again with his Physical Therapist holding on behind him. I notice he has a full head of hair; I also notice he has two prosthetic legs. I have two good legs – bet he'd trade with me any day of the week.

    Like

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