Deaf Musician vs. The Acoustic Guitar

Dear Steve,

Think about all the stuff you’ve overcome with this hearing loss. C’mon, man. Break it down. Start with what you have, one tone maybe? Then add onto it. Slow and steady. The brain can do it, man, but can your heart? Go for it. Just try.

Love,
Stev
e

I am Deaf, I have a cochlear implant. I am/was a musician. I am trying to play my acoustic guitar again. This is Year 5 after the activation of the cochlear implant. I have not been playing much guitar these past 5 years. But because my son has been exploring instruments, I sometimes get it out and play a bit with him while he plays his violin or piano, but for the most part, I’m faking it.

Holy crap, you fake it! You’re a faker. Have you been faking it for the past 20 years with the band?

Have I been faking it?

Yeah, I realize, I’ve always been faking it to some degree. Playing off any stimulus of rhythm, visual cues, or whatever sound was coming in with that 15% hearing in my left ear. Whether it’s feeling the kick drum or watching the bass, and a heck of a lot of memorizing.

Faker!

I wonder if the memory of the song or scale becomes sound inside my head. Someone should do a study on that. I’m noticing after a 5 or more-year hiatus from playing guitar that I forgot these sounds, and the memories have faded. So, I’m furious and committed to trying to remember. I’m going through a set list of about 100 songs and it’s frustrating to the max. I smashed a guitar recently. This “remembering sound” might be a challenge that might not be physically possible for me to achieve.

How did you write all that stuff before? When you had like 20% hearing? Maybe you had all the tones stored in files in memory? Maybe before the implant, with the 20%, and the memories intact, you could still navigate the melodies and chords? Remember jamming your left ear onto the guitar body over and over to write melodies? You messed up your neck, man!

Playing the guitar now, with the implant, sucks. It just flat-out sucks. There is no tone recognition. Just the physical pluck of the finger on the string. Just the click-clack of the pick hitting the wires. There’s not going to be any writing of new tunes, that’s for sure … which is completely maddening because every time I pick up a musical instrument, I get some song ideas within the first few minutes. I think that’s why I smashed that piece of crap guitar that day. I’m so deflated with the whole thing. Like, what’s the point of this?

Why don’t you do something else man, like 3D animation or something where you don’t need to hear?

But, if I can figure out how to regain the memories, if I can solidify one or two memories of tones, I could probably work off of that. I definitely have a few tone memories in there. Like, from the Hendrix tunes.

Dude, are you talking about a deaf guy spot-memorizing tones on the entire fretboard?

I can do it. I can try at least.



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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Deaf Musician vs. The Apple Tree

Dear Steve,

I don’t know what to say about this. And I’m a little disappointed.

Regards,

Steve

I am a Deaf musician and am starting to play my guitar again after about a 5-year hiatus. I stopped playing after I got the cochlear implant because that new stimulus threw me for a loop the loop. It was quite a freaking loop and I’m still looping but trying to pull out of it and get to jamming again.

I’m starting with the acoustic guitar, which seemed to be my home base as the hearing declined progressively. Maybe because of its big hollow body with lots of vibrations, and it also gave me the ability to jam the left side of my head onto the body wood to get a little pinch of tone with the 15% hearing I had in my left ear.

So I’m out in my backyard with a couple beers and going for it with a Hendrix tune, Voodoo Chile. It was probably the first song I ever learned, and I still remember it in totality. I run though it twice and am reacquainting myself with the parts and the chords. My technique is still intact; I’ve been playing a bit for my son as he learns some instruments. I say “playing,” but I’ve just been going through the motions for my son. Trying to back him with a rhythm section as he learns. But it’s feeling pretty darn good today. I haven’t enjoyed picking up the guitar in over 5 years.

With the beer haze and setting sun, imagining performing for a coffee shop crowd at an open mic, I go for it again. I’m feeling it! This is good. I’m ripping and it’s on the acoustic! Holy crap! I’m imagining tapping the mic stand with my foot to produce a backbeat and instead of a distorted solo section, I channel some riffs from the old acoustic blues masters and use the backbeat as a rhythm.

Dude, you’re ripping! You can do this.

I bring it back into the closeout. It’s tight and I riff on the ending a bit and shut it down with a big fat bluesy E chord. Damn, OK. That was good. Well, it felt good. I wonder how it actually sounded. I remembered it in my head … I think. Did I remember it, like hear it? Am I “hearing” it or just doing the motions?

I get an idea. I go inside and ask my son to take the guitar into the back room for one minute. Either leave it as it is or mess up the tuning on each string a little bit. Then bring it back and don’t tell me what he did.

He comes back in a minute or so and hands me the guitar and goes back to playing video games. I go back to my spot at the “open mic” and get ready to perform Voodoo Chile! I start with the foot tapping backbeat this time and get it rolling. It’s feeling pretty good, and I even imagine singing the verses and then actually sing the chorus out loud. Going into the solo section with BB King and the others. I’m ripping again! This is cool. I do the second verse and close it out with the flourishing E-chord.

Whoa! Cool, man.

He must have left it as it was. I go in and he pulls off his gaming headphones and says, “I untuned it, I messed up all the strings.” And puts his headphones back on and gets back to the game.

I’m getting this pukey feeling in my stomach as I go back up and head outside. I am going to puke. Frustration is building and I’m starting to freak out. I walk by the chair I was using for the “open mic scene” and head to the front yard. As I pass the apple tree, I “swing for the fences,” and demolish the guitar … and then toss it in the trash bin and put some garbage over it in shame.



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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Deaf Musician vs. The Recording Studio

“I’m going to hit the ONE and THREE with my left hand here, Steve, and the right hand is the TWO and FOUR. The right is pretty much the snare drum,” says the drummer. “It’s going to look like we are playing, kinda. You can do it. Just like we are playing live… kinda.” The drummer smiles. He says he has been air-drumming since age 8, in 1981, when Rush’s Moving Pictures came out. This is fun and easy for him, he says. He could do this all day, he says.

Dude, I’m afraid you’re going to be doing it all day. I’m sorry, man. And thanks. I don’t pay these guys. They just do it for fun and the love of making music, and for friendship. They’ve written and created their parts to the songs and are as invested in the project as I am.

We’re in the recording studio, trying to record my guitar tracks for one of my self-produced albums. The drummer is standing at my 2 o’clock behind my notebook on the music stand and next to one of the flashing lights we use for the downbeat cues, the ONE beat. The engineer and I rigged a tempo flasher and hooked it up to an old lamp.

The bass player is sitting on a bench at my 10 o’clock, playing air bass and air singing. He will exaggeratingly play the bass without sound. Over and over. We have a mic set up so he can very dramatically lean into it to cue a verse or chorus coming up. The “lean” would catch my attention and I would shift back from wherever my eyes were looking to read his lips. “Let’s do another take—put a gritty vibe on it.” “Watch your pick angle; you’re scratching the strings—let’s do another take.” “Wrong chord there, it might be a minor chord—let’s do another take.” “Watch that hit after the chorus, it’s on the offbeat—let’s do another take,” and on and on. After hours of this, he’ll say something like, “You got this man, I just don’t know if I do. But you got this.”

I know, man, I know … and thanks. I usually pay for the hotel if we’re recording on the road, and buy meals and beers. But again, no pay for these guys. They are just enjoying the music. They are invested. I often wonder why they commit to playing and recording with a Deaf guitarist/songwriter, but try not to let that thought bring me down and distract me from the fun and the task at hand.

The engineer is behind the bass player and drummer, sitting at the soundboard in his booth, looking at us through a thick window. For the past two days, we recorded the drums and bass in a live-stage setup with headphones, so the drum tracks are totally clean. Bass is lined into the board and totally clean. My guitar tracks are lined into the board and are mostly crap—scratch tracks. Now it’s time to set up the studio to accommodate a Deaf guitarist and record some solid guitar tracks. I rarely catch a good track in the live-stage setup, and history has proven it’s best for us to rerecord all the guitar tracks later. So I’m recording two different guitar tracks for each song and a bunch of solos too.

I’m on my chair in the back of the studio room, looking at the guys and the engineer. Eternally grateful to these guys for giving me the opportunity to record my ideas. I have headphones on, blasting the modified click track and the drums and bass tracks so I can feel the vibrations. The modified click track is a track we make with a bass drum so I can feel the pounding click on the sides of my head. All this stuff so I can record the guitar tracks. I often wonder if I should just teach another guitarist the songs and have them record the album, but I try not to get too down on myself and focus on the task.

I’m tracking a solo and we’re on the 17th attempt and I’m just rattled now. Take after take after take. You can’t express what you want to express in a solo if you’re not feeling confident. Come on man, psych it out. You can do it. You found these tunes floating around your head; you organized them, wrote them, passed them around to the guys, and practiced the heck out of them. You know these tunes inside and out. Do it. You got this. Rip it out!

I take a few breaths to center myself and nod to the engineer that I’m ready. Trying to be present but also trying to imagine the mind frame I was in when I wrote the song. Watching the engineer count it off, watching the hands of the drummer and the flashing light, checking my notes, watching the bass fretboard, reading the singer’s lips and trying to “hear” the song. Mostly I’m just trying to get to that place where I’m in it, in the flow of everything. When I get to that place, all the stuff happening in the studio becomes one synchronized visual movement. Like a machine with all these moving parts working separately, but together in the flow. That flow gets translated to music in my head, and my hands just do their thing without thought. That flow brings me to the place where I “hear” him hit the snare drum, “hear” the bass line, “hear” the vocal melody. That’s the place where I need to be.



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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Pandemic Deaf

Dear Steve,

Wow! Things got really bad, quickly, for all of us with this pandemic, and it has really added a few layers of communication problems for the Deaf and hard of hearing. Keep your head up. Help out where you can. You’ll get through this.

    The shutdown. Social distancing. Masks. Layers upon layers of isolation. A deprivation of connections. This is like the zombie apocalypse for the Deaf guy in a hearing community.

     A mother and daughter duo slide across the street. Slowly, ever so slowly, a few feet at a time, with long pauses in between. Skulking. Hesitance? The mother is still in a bathrobe. The daughter is almost attached to the mom; they might be stuck together or have their arms entangled. They appear to be making their way toward my wife in the front garden. Slowly getting closer and closer to my yard.

     Heads up, Honey!

     My wife is working on the gardens in the front by the curb. Glancing up and back to finish a weed pull. At least she has a few garden tools for defense as the duo of masked skulkers take another few steps to our curb.

     Whoa! Another is sneaking up on our property from the side.

     An older, severely weathered skulker with straggly silver hair approaches from down the street. Same deal. Couple of steps, then a lengthy pause, then a few more, then pause.

     It’s just the way the virus is affecting them, dude. Affecting their motor systems and all that.

     This old skulker has her mask on AND shaded sunglasses. Ugh! She seems to be headed toward my wife too. The slow, sliding walk and pause, walk and pause.

     The hair, mask and glasses just might be too much for me, and I struggle with my fight-or-flight response. And here comes another one from the other side! Same slow sliding walk, with the pauses. So weird! Older female, masked, sunglasses, and still carrying pruning shears!

     F- this!

     I retreat from the front porch back into the house and let my wife deal with these skulkers. I’m pretty sure she can handle it, but I watch from the front window.

     They all seem to have congregated around my wife in a large circle of about 6-8 feet away from her. She is now standing with a garden tool in each hand and one foot on our big yard rock. They are standing there looking at each other. Stances shifting slightly. Shifting and looking. Staring. A slight shift of a head. Ominous staring. If they get any closer, I’ll have to go out.

     With the shutdown and the social distancing, and then finally a concerted effort of the whole community to wear masks at all times, even when 6 feet apart outdoors, around my health-compromised wife, isolation has increased to the max for me. Masks, sunglasses and distance mean no facial expression at all. No eye contact. No connection. I just can’t get myself to sit in the front yard with a bunch of my hearing neighbors in lawn chairs 6 feet apart and with masks on … at least not without a bottle of sanitizer, a bottle of whiskey, a canister of Clorox wipes and Netflix running. I’ve tried this method exactly one time out of the every freaking night that they do this for four months now.

     So, I’m pretty much not socializing with the neighbors. My signing friends live in different towns and are dealing with their own crazy situations. Contact with my students and co-workers is closed. Contact with my teenage son is on and mostly off as he adjusts to online learning and gaming with his friends 14 hours a day. Contact with my teenage daughter is on and mostly off as she adjusts to online learning and TikTok 14 hours a day. Contact with my wife is on and mostly off because she’s been sick all year from chemotherapy. Zoom doesn’t have captions yet, and Google Meet does but they suck. I’m hanging out in the vegetable garden with my cat. Isolation to the max.

     Yet, isolation doesn’t mean depression or bad times for me. I do like being alone and appreciate alone time, and that is the fuel I use for creative endeavors. Being alone is different from feeling alone though. As a Deaf person in a hearing community, I’m no stranger to being alone, even when surrounded by people. But this pandemic has really added a few layers to feeling alone.

     I tend to let my imagination run away with things, but all in all, we are doing well. We are keeping my wife safe as she recovers, and our community is keeping safe. As for me, I’m sure I can go a few years in my garden with only the cat. We are lucky. I am seeing stories of Deaf people who are sick with COVID-19 and in hospitals without communication support. Deprived of communication. Surrounded by nurses and doctors in full masks, gloves, gowns and face protection. Family is not allowed in the rooms, interpreters are not allowed in the room, nobody is allowed in the room, except hospital staff. Horrible! Something needs to be done about that.

     Some little things are being done. I’m also seeing stories of our frontline health workers learning some sign language after excruciatingly long shifts to communicate with their Deaf and hard-of-hearing patients. They are creating communication boards with voice-to-text technology and other apps. They are making clear masks and clear face shields when possible to aid lip-reading. Heroes!



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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A Tinnitus Story, 4 – Glass Half Full

Dear Steve,

Remember, your brain is your best weapon against the tinnitus. Remember, the beast is slain first, by your belief that you can do it.

     Deaf and severe tinnitus is not a good combination. The less hearing you have means the less distraction from the tinnitus. If you’re deaf and you have moderate or severe tinnitus like I do, you’re probably going to have some problems. All that you hear are the cracks, the hissing, the creaks, the waves and trains. Every second, all day long. All night long.

     After having the cochlear implant surgery, I accumulated a whole new slew of raging tinnitus noises and refused to wear the implant as I tried to figure out what caused these tinnitus noises and reverse the symptoms. I spent a year in despair, researching, trying various healing techniques recommended by doctors, keeping logs of diet changes, exercise changes and how weather fluctuations affect my tinnitus symptoms.

     None of my efforts or actions seemed to make any sense or improve my symptoms. Nothing worked until I finally fully accepted the situation. Acceptance allowed me to let go. To surrender. Total acceptance allowed me to open my mind to new ideas and thoughts about the tinnitus. Steve, this is it. This is how it’s going to be. Deal with it. You are tougher than you think. You can figure something out. Acceptance allowed me to try the cochlear implant, which helped me discover some tinnitus coping techniques. Full acceptance helped me dig deep and go to a place where I needed to face the man in glass and make some decisions about how I’m going to live like this. Steve, glass half full, or glass half empty? Roses have thorns or thorns have roses? You can’t hear a damn thing, or you see so much … what’s it going to be, man?

Glass half full!

     With the help from the pink noise masking and with my surrender to acceptance, I made a decision to face the noises head on. I’m trying to change the way I look at the symptoms I’m suffering from. A full mental adjustment. 

     I began to isolate the flood sounds and started to work on mentally blocking them out. I create “rooms” in my head and put each noise in a room and close the door. Of course, at night, when I’m sleeping, the noises sneak out to cause havoc in my dreams, run rampant and have a keg party. I find that early every morning, I need to massage my head and neck and work on breathing and blood flow. I realize this is a form of meditation, and I think this is something you need to come to on your own.

     When my wife asks what tinnitus noises I have today, I sometimes find myself wondering which. I can go to that room, knock on the door and visit with the noise. It would actually seem to get louder! Then I’d leave the room and close the door again and block it out to some degree, and focus on what I can hear or see or feel as a distraction. It’s working. 

     I’m also working on turning the negative connotations associated with my symptoms into something more positive. When telling doctors and friends about my tinnitus symptoms, I usually labeled them as Radio Broadcast, Trains Come-a-Roaring, Wind Through the Cave in a Storm and Coach’s Whistle. 

     Now that I’ve changed their labels, it has fundamentally changed how I deal with and react to them. Radio Broadcast is now called Communication From My Ancestors. Trains Come-a-Roaring is now referred to as Funky Bass Line. Wind Through the Cave in a Storm is now labeled Female Moans in the Midst of Orgasm. The Coach’s Whistle is now a reminder of how lucky I am and how great life is. I call that one the Game Show Winning Buzzer these days. I go into the Game Show room, move my neck to the right, BUZZ! I’m reminded that I’m winning! BUZZ! I’m lucky! BUZZ! I will get through this! BUZZ! I can do this! 


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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A Tinnitus Story, 3 – Pink Noise

Dear Steve,

You need to investigate how masking white noise is helping you cope with tinnitus. Do your research. Try it.

     At some point in my life, I remember an audiologist telling me about masking tinnitus with white noise as a possible coping mechanism. This was back before I had the cochlear implant and was dealing with severe profound deafness. We dismissed this as a possible support idea because I just couldn’t hear the white noises.

     After getting implanted, I accumulated a whole new slew of raging tinnitus noises and refused to wear the implant as I tried to figure out and reverse these tinnitus symptoms. I spent a year in despair, without the implant activated, researching and trying various healing techniques recommended by doctors. Keeping logs of diet changes, exercise changes and how weather fluctuations affect my tinnitus symptoms. All in attempts to try to “heal” the tinnitus.

     Hey, that was a rough run, but you had to find out. You needed to do the work and see for yourself.

     None of my actions seemed to make any sense or improve my symptoms. Nothing helped until I finally fully accepted the situation. Acceptance allowed me to let go. To surrender. Total acceptance allowed me to open my mind to new ideas and thoughts about the tinnitus. Steve, this is it. This is how it’s going to be. Deal with it. You are tougher than you think. You can figure something out. Acceptance allowed me to try the implant again.

     Exploring how the stimulus from the implant was helping distract my brain from tinnitus noises by giving it another stimulus to focus on, I remembered what the audiologist and I briefly discussed about masking tinnitus. She said if we give the brain something to focus on, the tinnitus could start to fade into the background. One night I was doing some work on my laptop in the living room while my wife was in the kitchen doing dishes and cleaning up. Dishes and glasses clanging and silverware clanking have forever been my nemesis. In addition to the deafness and tinnitus, I have hyperacusis, which is a sensitivity to certain sounds that my brain perceives as excruciatingly LOUD. These sounds would trigger flight responses and elevate my blood pressure and anxiety, which in turn would elevate the tinnitus noise, which in turn would elevate my heart rate … all cycling into exhaustion, dizziness and becoming really f-ing irritated.

     I went to youtube and searched on white noise and found a whole load of 10-hour loops of “noises” there! All different colors and whatnot. Wow! I didn’t understand the color coding, so I did a google search to find out what the different colors mean. Each color has a different frequency mix of “noise.” 

     That’s cool, weird, and still confusing. Which one, man? Doesn’t really matter, Steve, you’re just starting to hear these sounds, and they all sound absolutely the same. Pick one. Another google search and I discovered that “pink noise” has been found to give relief as a masking function, to people suffering with hyperacusis! Well, there you go. Let ’er rip!

     I cranked up the volume bar and clicked play. Some advertisement from VRBO comes on yelling about vacation rentals I guess, as my wife comes quickly into the living room with a dishrag. It just sounds like crackling robotic, machine noise to me.

     “Very loud, ouch!” she signs to me, pointing at the laptop.

     “Dishes, very loud, Ouch-OUCH,” I sign back, pointing at the kitchen.

     After all these years, she knows, the kids know, even the neighbors know that I have sensitivity to normal environmental sounds, because I would cringe, or go to my knees holding my ears, or run out of the yard party with my pinkies in my ears.

     “Ok, I’ll lower it. Can you keep doing the kitchen stuff? I am trying some new training with the implant,” I sign and speak.

     Surprised, she gives me a thumbs-up and goes back.

     I skip through the advertisements and the pink noise comes on. It kind of reminds me of the old TV static, and I watch the swirling pink cotton candy screen they use as a video accompaniment for the noise, trying to find a loop in the digital swirl. It’s like a bunch of sea creatures swirling and swimming around the screen…. It’s like a close-up of blood cells or bacteria cells moving around at high speed, or just some trippy cosmic space light thing. It’s got to be on a loop, man, this cannot be a linear program. I’m wondering when the loop is going to reset itself. Like, how many seconds or minutes before it goes to reverse and back and forth. I’m intensely studying a pattern in the corner of the screen when I suddenly wonder if she is still doing the dishes. She is.

     Holy crap! I hit the mute button, and in a 2-second time span, the noise from clanging dishes fades back in. There must be some compression on the implant because I know a fade-in/fade-out from all my experience with music and recording, and that was a fade-in for sure. I hit the unmute button and the pink noise comes on roaring but then balances out while the dishes’ noises fade to the background. Whoa.

     I started experimenting with pink noise in every situation that I was uncomfortable in—from jogging on gravel trails to sitting in restaurants. Just jogging on gravel would trigger my heart rate. It became such a new and weird sound with the implant that it caused me to seek out jogging on grass or running circles around a field. I downloaded the pink noise loop onto my iPhone and would duct-tape it to my shoulder under the implanted side of my head before running on the gravel trail. It worked! It’s like a blanket—mellowing out the perceived piercing sounds from the gravel, blanketing the shrieking crunches. In restaurants, I started to just slide the phone under my shirt collar on my implanted side. It worked! It’s like a cloud of cotton candy pink haze surrounding me, dampening out the crap, distracting my brain from the tinnitus and environmental noise, and I could actually focus on talking to my wife. A fluffy haze. A weighted blanket over the crap. A mask. Masking the tinnitus. This is what the doctor meant.

     Having the implant on, and running pink noise, is giving my brain something consistent to focus on rather than the tinnitus shrieking, buzzing and ringing, or the perceived shocks of random sounds that pop up through the day.

     The pink noise loop is getting a lot of play on my iPhone. It has become my go-to strategy for coping with tinnitus and hyperacusis. I use it often, in private and in public, and in my classes too. The students were freaked out at first but now they like it and even ask me to put it on sometimes. I guess it calms them and helps them to focus as well.

    Steve and his nice big fluffy pink cloud blanket. It’s working.


 [JB1]Was repeating anxiety intentional?

 [sd2]yeah, i thought so.


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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A Tinnitus Story, 2 – 25 Doctors


Dear Steve,

That’s a lot of tinnitus, and a lot of doctors. Listen to Mark!

     Over the next year, I saw a heck of a lot of doctors. I’ve lost count, but I visited somewhere around 25 different doctors/healers in efforts to gain an understanding about the tinnitus flood and possibly reverse it. I hadn’t seen a doctor in about 15 years before that—other than my primary care physician and the cochlear implant personnel—and after 25 different doctors, with multiple visits, I’m still suffering from the same symptoms I’ve had most of my life, plus the tinnitus flood. 

     Now I know there are people out there who are really suffering. I mean, I don’t even have real physical pain or anything like that related to tinnitus and deafness. I realize how lucky I am. I’ve seen others suffering. But I forget that so quickly on those days that the tinnitus flood is raging. The trains are running through my head, the whistles blowing when I tilt my head to the right, the waves crashing, motors running, the bleeps and buzzes. The inability to complete a sentence through all the distractions. That year, I was alternating between hiding in my basement and coming upstairs and yelling at everyone, angry and irritated and just trudging through the day.

   “You should put the implant back on and try these antidepressants and power through. These should mellow you out a little bit and maybe calm the nerves in your head,” says the MD.

    “Let’s try these herbal drops. This one, this one and this one in the morning and night. This in the morning only, and this one before bed. Stay on the anti-inflammation diet for 40 days and let’s see if we can reduce inflammation in there. Do not cheat at all with the diet. Maybe you have an allergy to a food that’s causing inflammation and irritating your tinnitus,” says the naturopath.

   “Seems like your hips are misaligned, which might be causing tension in your spine and neck area. That could be causing the whistle tinnitus and others. Let’s work through some adjustments,” says the chiropractor.

    “You have a twisted group of muscles in your neck here that could be sending inappropriate signals to your ear mechanisms, like a misfiring situation. We need to sort this out,” says the physical therapist.

     “I feel that this might be stemming from the kidneys. I think there is a kidney yin deficiency. There is probably some nerve miscommunication going on, and we could work on inflammation and overall body health,” says the acupuncturist.

     “No, not everybody’s neck and shoulders feel sore all the time. Yours are hurting my hands. It feels like I’m massaging a tree trunk. We need to loosen things up here. This tension could be escalating your symptoms,” says the massage therapist.

     “Your jaw is misaligned, and you have some TMJ going on. This could be a cause of your tinnitus. We could adjust your bite for sure and hope that it helps your symptoms. It might, it might not,” says the neuromuscular dental professional.

     “You’re allergic to pollen, mostly … and dog and cat dander, but I don’t think these allergies are causing your tinnitus symptoms,” says the allergist.

     “You should tell Tracey that more sex is the only thing that helps your symptoms,” says my buddy Mark.


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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A Tinnitus Story, 1 – The Flood


Dear Steve,

You’ve always had tinnitus. You’ve lived with it, dealt with it, played with it, named it, cried about it, screamed at it and also occasionally forgotten about it! Use what you know. Ride it out!

     I’ve had tinnitus my entire life. I am 50 years old, I started noticing my hearing loss around age 10, and by age 20, I was categorized with a severe-profound hearing loss, or “deaf.” Additionally, I am/was a recording and touring musician. Somehow I was able to write, record and perform despite the hearing loss and constant hissing noise at 14,000 – 16,000 hz.

     Before my cochlear implant surgery 5 years ago, the tinnitus I had was a high-pitched hissing sound in both ears, fluctuating at about 3 or 4 out of 10. Meaning that in any given sound situation, 30% of what I was hearing was high-pitched hissing. As my hearing declined, the tinnitus remained and seemed louder because I wasn’t hearing other sounds. The decline was slow, so tinnitus just became a part of me. My friend. Always there when I looked for it. A consistent reminder that life is indeed a challenge. Sometimes tantalizing me with a question, “Is it still there?” and then tormenting me with the realization of its presence. A consistent, persistent and dependable presence. Until I had the cochlear implant surgery.

     After my surgery, I was placed on a series of medicines, antibiotics, steroids and diuretics. Weird things started happening in my head those first few weeks after surgery. What I eventually called the tinnitus flood introduced itself to me one night by way of a group of angels. I awoke to a choir of what sounded like angel voices repeating a phrase from what seemed like a verse from Come Sail Away by rock band Styx. It was spacy, sustained and sounded like a synthesizer set on the “angel choir” program. I couldn’t understand the words, and it was sort of just the melody of the singing, but harmonized. It was definitely in my head, and I couldn’t seem to stop it from sequencing over and over. This was the start of the flood, and I began having a bunch of new tinnitus noises that built up and out and around and basically just took over my life.

     The first of the flood was the angel voices, which I call Radio Broadcast. Sometimes there are musical angel-choir-type sequences and sometimes voices, like a radio broadcast from the 50s-style radio. This seems to always be a male-sounding voice with clear and distinct diction but indecipherable words. It’s like the parents’ voices on the old Charlie Brown cartoons. In other versions of this, I hear a chorus of angel voices repeating musical phrases over and over, like I did that first night. I hear them in harmony, two and sometimes three voices if I concentrate. I later found out that other people have this, and it is a diagnosed condition called nonpsychotic auditory hallucination syndrome. Whew! Hell yeah! 

     The second part of the tinnitus flood is what I call Wind Through the Cave in a Storm. It’s like a howling wind sound or a washout wave rolling in and out of my head through both ears. This one is a little scary because it can get pretty fierce. Fierce as in visions of a tsunami washing over a city block. Fierce like the stormy midnight waves crashing against the lighthouse out there all alone in the middle of the harbor. Fierce like you should sit down right this second or hold onto the wall. 

   The third I call Trains-Come-a-Roaring. This is either a clicking or rhythmic tone that sounds like an engine. Fast and repetitive rotations that my musical mind would label as something like a 16th note, or a whole bunch of hits per second. The sound of a train running over a rickety section of tracks kind of nails it. I believe this to be some sort of “hearing” of bodily functions—like blood running through valves near my ear. 

   The last of the tinnitus flood is what I call Coach’s Whistle. This is a positional noise when I tilt my head to the right side. It’s the most distinct as well as the clearest and loudest of the whole flood. Unlike the others, it has an on/off switch. I move to that position and the whistle blows steady and clear until I move back.

     Additionally, my lifelong tinnitus hissing jacked up to 5ish out of 10. All the tinnitus flood sounds fluctuate as well. Some days they’re on the right side, one or two of them on the left, sometimes both sides, all of them changing levels, and coming and going. All this came on during a monthlong period. I began waking up after a few hours of sleep in a state of emotion that I have never really felt before: despair.       I spent most of the following year without the implant on, trying to get a handle on why this happened. Researching. Trying to reverse it. Trying to deal with it. I saw more than 24 different doctors and practitioners of alternative medicine over the next year. Despair.


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 6 – Charlie Brown’s Teacher


Dear Steve,

You are doing it, man! You’ve been running the cochlear implant all week. You didn’t take it off once! Nice! You figured out a lot this week. It was a good idea to stay home and do this alone.

     I’ve been studying and working on sound identification all week. Inside the house, outside the house, in the car and at the supermarket. The one phrase I keep finding myself saying to myself this first week of my cochlear implant activation is “Everything f-ing beeps!” I’ve been constantly amazed at all the beeping this week.

     In the kitchen, the oven beeps when it’s preheated, the microwave beeps every time you press a button, then beeps some more at the end, a frantic beeping crescendo to let you know it’s done. That machine needs to chill out. The toaster seems to tick-tick each second as it runs its cycle. It’s a pretty good groove and danceable. Then it does a ring? Or something different, then a beep … maybe a little mini bell? I can’t tell yet with the implant. I picture a mini munchkin guy with a mini mallet, dancing along with me in there, then counting down from 10 and hitting the mini bell. He high-fives and celebrates with his partner when I take my toast out. Toaster’s got a good groove, Steve. Make more toast! The stack washer-dryer does some musical beeping when it’s done and maybe when it’s changing cycles too? Amazing. I’ve never heard any of this stuff, ever.

     The computer does some beeping when I start it up. Something different maybe—chiming? My iPhone seems to do a lot of noise-making stuff, too much, and after a few hours of that, I go into Settings and shut down all audio. Ha ha, I wonder how long you’ve had all those crazy sounds activated on your phone. All those meetings at school, classes, dinners. I think someone probably would have let me know if it was out of hand. I hope so anyway.

     The blinker sound in the car is pretty groovy too. I’m getting song ideas while waiting at stop lights for the turn. I can’t remember the last time I heard the blinker. Maybe never. I started losing my hearing around age 10 at the same time that the tinnitus gradually increased and kind of took over. You must have heard the blinker click-clack as a kid? Did the blinkers click-clack back then? I have no idea. I do remember the sound of our rotary dial phone ringing. I imagine the mini munchkin guys in there too, with a mallet in each hand, smacking the bell in a fast 6 count, taking a breath and doing it again and again until someone answers the phone or hangs up.

     Crosswalk signs seem to beep and tell you when to cross or some other safety warning. I can’t make out the words. The gas pump machine beeps and talks sometimes too! Why all the beeping? It seems like every type of touchpad has some kind of beep … to let hearing people know that their “touch was successful”? Holy crap! Steve, all these years, you’ve been wondering if your “touch was successful.” I touch the button and watch the screen at the same time, as it enters the number or symbol to make sure my touch was registered. You dork! You’re like a 90-year-old grandpa at the self-checkout line at the supermarket. Scanning your item and checking the screen to see if it registered. Scan and check. Scan and check. That machine beeps too! I’m so careful with touchscreens and scanners, it takes me forever. OMG man! Hearing people get the beeping confirmation and cruise through these machines. Oppression! Audism! How about vibrating touchpad buttons or a quick LED button flash to let Deaf and hard-of-hearing people know that their touch was successful!?

     Chill out, man.

     I’ve had an “awakening” sort of week. Discovering what everyday noises sound like, trying to figure out the cochlear implant, working on sound differentiation and battling old fears and habits around my 40 years of going deaf while dealing with hyperacusis and tinnitus. I figured out a lot of things this week, and this morning I finally figured out what is making the “Charlie Brown’s Teacher” voices.

     I spent most of my free and quiet work time in the back room the past few days in hopes of solving this mystery. I eliminated any environmental noises from outside or under the house. It’s definitely in this back room and/or in the kitchen bordering the back room. I eliminated the dishwasher, random radio alarm clocks, TVs or youtube stuff. I spent some time these past few days moving the fridge, sticking my head behind it and waiting for the noise to get louder or stop when I unplugged it. I usually did this when I heard the voices. While I was back there, the cartoon voices came and went. There were changes with the voices, but they were not corresponding to my actions behind the fridge. I was down there on the floor, on all fours behind the fridge, when I looked across the back room at my cat, who was standing over her food bowl looking at me. We stare at each other. Then she goes back to crunching away at her food and “Charlie Brown’s Teacher” starts talking! Duuuuuude!? What the…?

     My brain has been picking up the cochlear implant–processed sounds of the cat crunching her food as “Charlie Brown’s Teacher” voices!? Wow man, just …  wow. I’m feeling both overjoyed that I figured this out and totally hopeless when I realize I have quite a way to go with this technology if I’m ever going to be able to play the guitar and write music again. My guitars have been in the back of the closet for almost 2 years.

     Step by step, Steve. One sound at a time. One note at a time. Note by note.


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 5 – Viking Battle Mode

Dear Steve,

You need to go outside now, and you need to see how the cochlear implant processes environmental noises. You need to be ready and prepared to NOT take it off, no matter what happens. Leave the implant on. You can do it. Viking battle mode, dude!

     Last night I did the Cochlear Implant Training Program the audiologist recommended. It has a bunch of different environmental and musical sounds, quizzes and games to practice with. For example, it asks, “What instrument makes this sound?” and then it plays the sound and shows a picture of four different instruments. I have no idea which sound is which, and I’m a musician. It is disheartening to say the least. I got maybe 20% of them, which was probably just luck. I am not getting the differentiation in tone and texture with the cochlear implant, although cadence and rhythm are clearer than ever before.

     I’m going outside today to take a walk, get the mail and see what’s what with the cochlear implant in terms of how it processes outside sounds. I’m excited. Maybe you’ll hear a bird or something! Do birds sing and chirp in the winter here? I don’t know. There was a big snow a couple of days ago but the sun comes out often here, so maybe the birds like that. There are patches of snow and ice all around. I really don’t have any idea if the birds make noise here in the winter. Ha ha, man! That’s one of those things you didn’t know that you don’t know! Get out there!

     I head out the front door and into about 6-8 inches of undisturbed snow. It’s crunchy and loud in the silence of the open air in mid morning. I have not heard this sound in 40 years or so and have no recollection of it. I do some snaps while I walk to give myself a reference sound, but the crunching is drowning them out. I am perceiving the darn snow crunching as “pretty loud” through the cochlear implant, and I get halfway down the driveway before feeling the flight mode kick in.

     Dude! Chill out! It’s just some crusty snow! Breathe and keep going. Look, the street is kind of clear from the plow. That’s going to be better. I make a goal of getting to the mailboxes across the street and chilling out there for a bit.

     I get to the street, which is spotted with patches of snow and ice that have been rutted by tires, frozen, melted and frozen again for the past week. I try to step on clear pavement spots, but I hit a patch of ice and freeze. CRACK! That 2×4-to-the-head feeling again. Whoa! Get your balance, man. Keep going! CRACKLE! CRASH! Holy shit! I’m trying to jump and dance into the dry spots, with my arms out and waving around frantically.CRUNCH-CRACK! Holy Crap! CRACK! CRASH! It’s a minefield! Breathe, Steve, breathe! I make it over to the clear pavement in front of the mailboxes.

     My heart rate is way up, which causes my tinnitus to rage. Crap! Tinnitus sounds are ringing, chirping, banging. Waves are crashing and storms are blowing in there. I try snapping, but the tinnitus is overpowering the snaps. Oh, man! I can barely distinguish the snaps. Ho-ly crap! Trapped! Dude, get the hell out of here. Back to the house! Now!

     I’m freaking out and begin to look around to see if anyone is watching because I’m realizing what this might look like to the neighbors. Dude, get it together! Breathe! You are OK. I hold onto the mailboxes and do a bunch of breathing exercises and start to calm down. The tinnitus is still raging and I know how that usually goes. Steve, you know this stuff, you’ve been through it before. It’ll settle down in a few hours.

     After a minute or two of breathing, I realize I’m not going to be able to make this venture work with the tinnitus raging as it is. I’m not realistically going to be able to study and distinguish the environmental noises in this condition, but I am settling down a bit and take stock of the surroundings. I’m not registering anything as a recognized or unrecognized sound. Just tinnitus. Waves crashing, winds blowing, static, click-clacks and a roaring hissing. I stay for another minute and get my heart rate back down. See, man, you got this. Take it slow, go a different way across, avoiding the ice, you’ll figure it out.

     Wait! What the hell is that?! Uh-oh! Something is happening. Something big! Some big noise. I have no clue. Maybe a jet? Maybe an ambulance? If it’s an ambulance siren, you are going to need to take the cochlear implant off, Steve, and pinky-plug your ears … or just throw yourself in front of it! I’m looking around, up, down.… What is that NOISE?! I take a few steps down the cleared sidewalk and in the distance see the maker of this mind-melting sonic disturbance. A garbage truck! Coming my way. Run, Steve! Just f-ing run! Go now! Go!

     Panic. Heart rate increase. Tinnitus raging to the max. You’ve got to go through the minefield. Now! Go! The garbage truck is doing its grating, mechanical lifting and dumping. Motors are churning, and metal is grinding. Go! Steve, Go! I’m stuck. Frozen in place. RUN! Steve, RUN!

     “Ahhhhhhh! Ahhhhhhhhh! Ahhhhhhhh!” That’s me screaming as I run and hop back across the street, trying to avoid the mines, over the crunching snow field, and into the safety of my house.

     Holy Crap.

     I’m lying on the floor in the mudroom, laughing. The tinnitus is still raging to the max but I made it and the implant is still on. I realize that I didn’t “hear” the CRACKS and CRASHES of the ice minefield while I was screaming. Dude! The screaming kind of masked the CRACKS. That screaming kind of replicated the effect of the masking white noise loop you are using at night. Steve, you need to look into this masking idea further. I’m settling down and thinking about sitting up to watch and study the garbage truck and its noises through the window, as it does its thing out there. As the garbage truck approaches my neighbors’ trash, I get up and check out the hydraulic noises, dumping noises and crashes from the safety of my house. I realize that my wife is going to be mad when she returns next week and learns that I didn’t take out the garbage and recycling bins while they were gone.

     I was planning to tackle the “Charlie Brown’s Teacher” ghost voices in the back room this afternoon, but I’m not sure if the tinnitus storm is going to simmer down. That mystery might need to wait till tomorrow.


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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