Hearing Loss Experiences

Cochlear Implant Activation 4 – Feeling It and Hearing It

Dear Steve,

Day two of your Cochlear Implant activation! You’re doing good man. Step by step. One thing at time. Take it slow.

There are some sound mysteries to solve in the front room, or more likely, under the front room in the crawl space. Something down there is making noises! Lots of noises. Monster noises, and I think it’s probably the heater. I know there are all kinds of mechanics down there, as well as the general assortment of storage boxes, spiders, mice and zombies. I know that I am going to need to check it out, so I gear up. Carhartt overalls, because if I’m going to battle mice or zombies, I want to have some sort of armour protection. A big flashlight with new batteries and a bottle of water in case I somehow end up getting trapped down there. A pipe wrench in case I need to hit something…or somebody, in a close range melee. And a ski pole for distance stabbing and swiping away cobwebs and small creatures.

The crawl space door is a 4’x4’ panel in the garage. I should open the automatic garage door for more light, but when that ancient monster opens it hurts my ears even without the implant. Steve, just stick your arm through the entry door and hit the button, then close it and wait it out in the hallway. I do that and hunker down in the hall until it’s all the way up. Even from the hallway, It’s a cacophony of scraping metal and I’m picturing a screeching flock of banshees flying into the open garage door and circling my garage.

It stops and I enter the garage. No banshees. I remove the panel and on all fours, enter the crawl space with my flashlight on and ski pole extended in front of me. I go about five feet in and take stock. There’s everything I expected, and I try to isolate noise makers. There’s gas pipes, water pipes, sewer pipes, ducting, and across the span of the crawl space, under the front room, is the heater.

I decide to back out and fill up the tub a bit to see what water going through copper pipes sounds like. I start the water in the tub upstairs and head back down and immediately recognize the change of noises in the front room from the flow of the water going through pipes. Wow! OK. That makes sense. I listen to it for a minute and do some snapping and some foot tapping for differentiation, then go back into the crawl space. It’s louder here, like a water slide. I feel around on some of the pipes near me and find the running one. Wow! Feeling it AND hearing it. Awesome!

I grab the ski pole and slowly crawl over to the heater and all the venting ducts, knocking away cobwebs and smacking boxes to scare off mice or draw out any zombies. I pause with a realization. Uh-oh Steve! What if the heater turns on while you’re down here?! I imagine it coming on and seeing myself on my hands and knees snapping and tapping things like a maniac, while fighting zombies and spiders. It’ll probably be a shocking type brain zap with the fans and burners but I decide to chance it and push onward. I know this is probably the source of a lot of the ‘noise’ I’m picking up in the front room and need to investigate. Man, this furnace even looks a bit like a screaming monster. Kneeling in front of it now, I am picking up a distinct new sound other than the background noise from the water pipe I left running. I can see the pilot light flickering … Wow! Are you hearing the flickering flame of the pilot light? It kind of sounds like a click-click, click. Maybe that’s what it really sounds like? I hang out for a bit, listening to the clicking and then head back up to the front room.

I turn off the tub faucet and let it sit and then go stand by the thermostat for a few minutes taking stock of the current noises in the room. I’m going to turn the heat up and see what I can make of that. I turn it up and a few seconds later is the pop and grumble of the pilot light igniting the burner. Holy crap! I was ready for it and expecting it, but the recognition still feels pretty amazing. I know that the blowers are going to turn on next, and a few minutes later, Whoosh! They start up and to me it sounds like a hair dryer set on high blowing into my ear.

Steve, things are starting to make some sense. Well, except for that ‘Charlie Brown’s Teacher’ voice in the back room. What the heck is that? You need to spend some time on that one, but taking it slow and getting the family out for this activation was a good idea. You should go outside tomorrow, take a walk.

Steve DiCesare is the author of Dear Steve, You’re Going Deaf available at youregoingdeaf.com. Art by Ian J Miller. If you’re interested in being a guest blogger on my Hearing Loss blog, please contact me.

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Cochlear Implant Activation 3- Brain Over Everything

Dear Steve,

You’re doing it! You’ve had the cochlear implant on for almost two days now. Stay chill. Remember to breathe and keep snapping. Focus on the snaps, the logic. Good luck!

I kept the implant on all day and night yesterday right up until I went to sleep. I spent most of the day walking around the house moving things, listening to noises, trying to make connections, and then working on some audio training programs on my laptop. Just taking it slow and trying to figure out all the sounds associated with the house and my movements, how the implant processes things, and especially how my brain is processing the information coming from the implant.

It’s all about the brain, Steve. Mind over matter. Brain over everything.

I made it through cooking some meals in spite of my fear of dishware. After a few run-ins with clanking plates I’ve decided to work up to using the porcelain dishware later this week and am using paper plates and plastic utensils and cups.

I discovered quite a few things yesterday. Notably, that the microwave buttons beep! Then it takes off like a rocket launch when you press start, until the timer runs down, then beeps again to let you know it’s finished. Whoa! I also notice that I type really loudly! I wonder if those stares I get at the library are about my loud typing.

Last night after I did some of the audio training program, then I did some journaling, and that’s when I noticed how loud I type. Every move I make seems so loud. Each key press feels like a poke into my brain. I remembered from last year, that listening to white noise helped sometimes by giving the implant, or more accurately, giving my brain something to focus on so everything doesn’t seem so loud. Youtube has an assortment of sound ‘colors’ and my research for hyperacusis and tinnitus masking led me to ‘Pink Noise’. I ran ‘Pink Noise Loop’ last night while I typed and noticed a few moments of relief or freedom, or clarity … where I actually wasn’t thinking about sounds, tinnitus, or hearing.

Yes! You need to explore that more, Steve.

The plastic ‘Thank You’ bag is still on the counter.

Dude, do not touch the bag. I am staring it down. This is going to be a problem. Don’t look at it. Deal with it later. You should get it into the recycle area under the sink tomorrow morning BEFORE you turn on the cochlear implant! I make a mental note to do that.

I’m spending a lot of time in the front room, typing and training because something weird is going on in the back room, the living room. A few times through my exploration of the house-noises, I keep thinking I am hearing people talking back there. Every so often for a few minutes at a time. I can’t seem to figure it out. I am not seeing any of the neighbors outside, there’s no radio on, there’s no workers on the street. But, I am occasionally hearing people talking in that ‘Charlie Brown’s Teacher’ voice, where you can tell they are talking but can’t understand them. What the heck is that? It’s got to be a neighbors radio? Do some snaps. I snap a few times and the weird talking seems to be about the same volume as the snaps.

I do have a condition related to the tinnitus called, ‘Non-psychotic Auditory Hallucinations,’ often referred to as ‘Musical Ear Syndrome.’ Sometimes with hearing impairment the brain interprets tinnitus sounds as weird ghost voices or, in my case, angel voices and music phrases … in harmony. This usually happens late at night for me, in the quiet hours. This is not what is happening in the back room. This is different. There seems to be a bunch of ‘Charlie Brown’s Teachers’ having random three minute meetings throughout the day back there.

What the heck is it? Ghosts! Ha ha. Dude, chill. It’s totally freaking me out, so I have been hanging out in the front room. Steve, one thing at a time, step by step. Work on the front room mysteries and the ‘Thank You’ bag, then you can spend some time figuring out the ‘Charlie Brown’s Teacher’ voice.

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Cochlear Implant Activation 2 – Dude, Snap!

Dear Steve,

Just remember, each passing hour that you leave the cochlear implant on, will make it easier for the next hour. You have to power through. Stay positive and remember that this is basically a miracle. A scientific miracle. You are going to be able to understand your kids and wife. You’re going to be able to understand your students at school. Don’t take it off. You got this.

All right man, lets try getting out of the closet.

Walking through the bedroom. Wow this is crazy. I’m noticing sound as I walk and I’m hoping that shweeping sound is my pants legs rubbing together. There’s some other BIG sound going on out here, and I think it’s the bathroom fan that I always leave on. I imagine my wife frantically signing “Fan-stop! Please-Fan Stop!” She has an array of signs for all the things I leave on like “Water-running-again!” accompanied by the irritated face. “Blinker! Blinker!” with the irritated face, and “Siren! Siren! Siren!” for emergency vehicles. As I get closer to the bathroom I decide that I’m not going to go in there, each step closer it’s sounding to me like there’s a jet engine in there. I reach around the door frame to the switchplate and turn off the switch. Yes, it was the fan, and as I move away the absence of the fan noise allows some other sounds in. Something connected with my walking. Maybe my shoes on the carpet or squeaks in the floor?

Wood floor in the hallway now and heading down the stairs into the kitchen. Holy Crap! The stairs are producing screaming banshee screeches inside my implant processor. I freeze after three. WHoa! This is crazy.

I run down the rest and stop at the bottom in the kitchen/dining room area and take stock.

There’s and overwhelming change down here and I just can’t figure it out. Zwerpies and shweeps galore. I go to the island in the kitchen and it seems like the stool yells something at me as I sit on it. Like one of those animated kitchen items from a Disney movie.

This is so amazingly weird.

I sit totally still for a couple of minutes and try to isolate what seems to be making this raging assortment of noises.

Dude, snap.

I snap my fingers for a bit to get some perspective. To this new cochlear implant, my snaps sound like someone hitting a tree trunk with a 2X4 and it takes my brain a minute to calm down and put things into perspective. The snaps are way louder than the raging noises. So get a grip Steve. They must be some of the house noises or something outside and I have all week to figure out what’s what. Take it slow. It’s going to work this time.

There is definitely something happening with the fridge and I move over there and check it out. Some motors and coolers and whatnot. For sure! Wow! like a factory in full production mode. I’m wondering if the ice machine lever is still in ‘On’ position this winter, and wondering what kind of monster sounds that is going to make when the ice finally falls into the bin.

Run! Flight mode.

Dude, chill out. Snap!

Calming myself down there in front of the fridge for a minute I decide to try the fridge water spout. I grab a glass from the drain board being super careful not to clank it against any other glasses. Clanking dishes is a huge trigger noise for me. That’s always been the biggie for me and my hyperacusis, the sensitivity to certain sounds, when I was younger and losing my hearing — clanking dishware! I have ran from many kitchen areas, with my pinky fingers in my ears, cursing. At family parties, In friends houses, restaurants, and even dinner parties with people I have just met.

I press the glass against the lever. Ha- ha! Oh my gosh! That seems so loud. That could be a firetruck hose filling up a kiddie pool! My glass fills up and I take a drink and am amazed at all the weird sounds coming from my body. Gurgling and breathing and swallowing.

Whoa ! What is THAT!? In a second or two my brain registers, syncopated, rhythmic sequences … as footsteps … someone is in the house!? I turned around to see the cat coming down the stairs. Holy crap! Seriously? Can a cat be that loud? Her claws or the pads of her feet? Really? She is a little bit heavy, and I’m having a hard time making sense of this but there is still a bunch of other noise in this room to figure out.

Uh-oh. My nemesis! My #1 all time worst enemy from the first cochlear implant activation last year! A big reason why I failed to keep the implant on … The plastic bags! One of my kids left a plastic ‘Thank You’ bag on the counter in the hustle to get to the airport. I stare it down hard, for a long minute and review my options. I remember from the first activation last year, that through the implant, handling all these plastic bag type stuff produces a horrible mess of crunching-crinkling noises that send my fight-flight response into hyper-mode. Which then elevates my tinnitus, which elevates my heart rate, which elevates my tinnitus, which elevates my fight flight mode … Cycling into a climax where I would rip the implant off. My brain is connecting the sound of these types of plastic bags, through the implant, with sounds that I’ve fought against for 40 years with my hyperacusis.

Dude, do not touch the bag. Don’t look at it. We’ll deal with it later.

Everything makes noise! Every single move I make is making a sound, squeak, shweep, SQUAWK! …. The stool, the cabinet doors, my feet on the floor, the cup as I place it in the sink, my hands brushing against my pants, motors, computer fans? Stuff outside? … every single thing.

Dude, chill out. Take a breath. Do some snapping. Focus on the snaps, the logic.

Steve DiCesare is the author of Dear Steve, You’re Going Deaf available at youregoingdeaf.com. Art by Ian J Miller. If you’re interested in being a guest blogger on my Hearing Loss blog, please contact me.

Cochlear Implant Activation 1- Face the Fear

Dear Steve,

You can do it! Activate the cochlear implant this morning, right now! You have to do it. It’s time. All the pieces are in place for you to succeed at this right now. Remember, the beast is slain first, by your belief that you can do it. Do you believe this is going to work this time?

Here we go! I say to my reflection in my wife’s full-length mirror, standing in the back of my closet watching the LED light on my cochlear implant device flash green … twice. I’m set on Program 2 of 4 and at volume 5. Each of the four programs has a volume control of 1 – 10 and each program could be programmed very differently for different situations, like a “restaurant” or “classroom” setting. Mine are set for initial activation and training. They are programmed for consecutive volume increases, because I need to get to Program 4 as soon as possible if I’m going to get any speech cognition.

I need to get this implant processing and leave it on, power through what I remember as a few months of total confusion, chaos, crying, insomnia and despair. I have not had the implant on for the last six months but did the initial activation a while ago and had it running for a few months before freaking out and taking it off in hopes of solving some problems I was having recuperating from the actual surgery and medicine I was prescribed through the surgery and recovery.

It’s the week after Christmas, and my wife and kids are in another state visiting my in-laws. I usually go with them, but we decided I should stay home and try to adjust to the activation in a quiet house. I’m in the back of my closet because through the initial activation and months of trying to figure this out, I learned that I needed to turn on the implant each day in the quietest place I could find. Then do some tapping on the wall or snapping my fingers to calm my brain as the implant erupts sound and stimulus into my cochlea.

Snapping or tapping helps my brain understand a known variable and gives it something to focus on and time to adjust. It took a few weeks to figure this out after the initial activation and I began by doing this tapping, snapping routine in the car, because the morning commotion in the house as everyone is getting up and ready for school was an insane amount of varied nonsense to my newly implanted brain. So, when the house was filled with commotion, I found that the car in the driveway, on my quiet street, was the place to do it and a consistent assessment space for the daily journal I kept.

Is it going to be like last year? Is it going to be different? Am I going to lock myself in the basement again? No. I look at the man in the glass and remind him to remember all the work he’s done to prepare for this activation. Face the fear, Steve.

“F.E.A.R. – Face Everything And Rise.” – Zig Ziglar

OK man! It’s going to get weird … You’re ready, Steve! Do it! I take a couple of deep breaths because I remember that when this sucker activates, it gives my blood pressure and heart rate a tweak. I put the implant over my ear, and the magnet on my processor locks onto the one in my head under the skin. I’m supposed to hear two distinct beeps right now to let me know which program I’m on, but my tinnitus completely overpowers these beeps. I’ve never heard them before, and I prepare myself for the inevitable rush of Shweeps and Zwerps that I know is coming any second by snapping my fingers.

WHAM!

Focus on the snaps.

Shweeps are Shweeping and Zwerps are Zwerping but it’s not too bad here in the isolation of this closet. Last year, the audiologist and I worked hard to limit the amount of digital feedback junk that arises upon turning on the unit in the morning.

Focus on the snaps.

I stand totally still for a minute or two and let my heart rate settle. Any movement causes clothes to rub and things to squeak. I’ve never really heard these sounds or at least not in the past 40 years or so. Or at least not in the way they sound in my brain through the implant processor. My breathing sounds like someone mouth-breathing through a microphone. The snapping sounds like branches cracking; cloth rubbing sounds like coarse sandpaper.

More snapping, focus on the snaps. Logically, I know that my snaps are about 15 decibels. That is not loud. In fact, that is a very soft sound. My brain doesn’t get that fact. Focus on the logic, focus on the snaps.

All right man, let’s try getting out of the closet.

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