Setbacks

The euphoria of the 2nd CI began to fade a couple of weeks after I left the mountains and returned to Richmond where I have much less control over my auditory environment.  The left CI, or what I assumed to be the left CI has been bothering me greatly again for the past 3 weeks or so.  I have found myself clicking it off when feeling overwhelmed by sound, which is happening more and more.  Library printer?  Off.  Video games?  Off.  Loud TV?  Off.  Starbucks machinery?  Off.  Overly loud voices in the library? (there goes that mouth again)... Off.

Not good.

The last time I saw my audiologist, he mapped the left CI at 4 volumes, with 4 being the highest and 1 being the lowest.  I left his office with it at 4 and it sounded pretty good and very manageable.  Within the last couple of weeks I have dropped it down to 1.  Then I tried it back up at 2 and couldn't even take that.  So back to 1.

Very frustrating.

I saw my audiologist again today and he checked the levels in my left CI (which, by the way, is the one I got implanted first) and it is even worse than I thought.  I am hearing less with it than I was this time last year. I've lost about 20 decibel levels, you can see what I mean below.  This makes me very sad. :(

My audiologist said that the constant flicking it off is contributing to this, although he assured me this is not uncommon in adults with long-term hearing loss after their 2nd CI.  He said he would estimate about 60% of adults like me find themselves taking off one CI or the other after a bilateral implant, but he said eventually about 95% come back to using them both.  He says it is partly because the brain is now adjusting to auditory input from both sides. 

He also said that when I am around these noises that I find so difficult to deal with, to put some distance there, if possible.  Get away from the library printer.  Get away from the video game noise. Or at least move so I am not in such close proximity to the sounds.  He said I can even turn the volume in the left CI down when around those noises. 

He told me that the goal for now is to keep me wearing it and to stop me from turning it off and then we can work our way back up.  He remapped it with one setting only and I am to use the volume buttons on the remote to go up or down as needed.  He hopes that by the time he sees me again, I will be using the up button more.

He didn't change anything about the right CI (the one I got activated in August).  He wants to leave it where it is while we work on the left one.

I'm tired.

ToEs, ToAs, and GoAs!

One day after dubbing my cochlear implant a ToE - Thing of Evil - I feel much more benevolent towards it, courtesy of a visit with a new audiologist. (Thank you, thank you, thank you, Kate, for asking me to please get in touch with him and get a second opinion!)

One of the first things Audiologist 2.0, henceforth known as A2, no wait, that is not impressive enough. He is a God of Audiology... Audiology God. GoA? AG? No, not AG, that makes me think of Attorney General, which makes me think of Ken Cuccinelli, which makes my stomach spasm. I like GoA, we'll go with GoA. So, GoA told me almost immediately to put in my hearing aid again! He was a little surprised to hear that the other audiologist told me otherwise. He said, "This is not a race. If it benefits you, use it. This is hard enough without making it more difficult than it needs to be." He told me my brain would eventually adapt to the CI and while it may take longer if I am wearing the hearing aid also, it would also happen more naturally. Or more "organically" as a friend of mine likes to say because it sounds more intellectual and impressive (you know who you are).

GoA said that people with bilateral implants tend to do best, then people with 1 implant and 1 hearing aid, and then people with the CI only. My hearing aid does not need to be my enemy!

I almost swooned on the spot upon hearing that. My hearing aid! Green light! Go! I couldn't wait to put on my hearing aid again!

GoA took a lot of time to explain to me what is happening in my brain. I really liked one way he put it - my brain is building a new library of sound. The Other Audiologist ... ToA ha! ... didn't really go over a lot of information with me. I felt like I was pitched into the deep end of the pool without any swimming lessons. Now I still kind of feel like I am in the deep end of the pool and can't swim ... but at least I can tread water and not drown until I learn the freestyle or the backstroke.

GoA also explained that part of the difficulty is that with the CI, my brain is putting familiar sounds in the background and focusing on unfamiliar sounds and that is why noise seems to be all I am hearing.

GoA also said that while being such a good speech reader as I am is advantageous in many ways, that it's probably making it tougher for me in adjusting to the CI because I rely so much on visual cues. He said that people who are good speech readers tend to take longer to adapt to CIs than people who are not. He wants me to try things like watching television without the caption.

He also said that the typical person needs about 3 months before they even start to feel they are adapting. It hasn't even been 3 months for me.

Why the heck was I feeling so rushed and pressured and stressed and like a big, fat failure???

GoA also did another mapping and turned down some of the higher frequencies. He says the goal is to have them at the same volume as lower frequencies, but that can take longer and that is okay.

I feel SO much better.

Tragically, I could not put on my hearing aid as soon as I got home because as some of you may remember, my sister hid it by my request.

A few hours later I happened to glance at a wooden heart container on the bar in the kitchen and I immediately thought, "I bet Kelly put it in there." I know my sister and she would not want to put it too far out of reach just in case I really needed it. She didn't even want to take it from me in the first place!

I lifted the lid and there it was, nestled among other odds and ends.

Putting on my hearing aid was like sinking down into a warm bubble bath. Throwing on flannel pajamas straight from the dryer when it is snowing outside. Relaxing into a massage chair while having a pedicure. So comforting. I missed it and it felt good to have some familiar sound come back without feeling like I was jeopardizing the future success of the implant.

And as for tacking the television without closed caption ... I feel a Buffy Marathon coming on!

Music To My Ears

On my music day -

Winner of the day (because everything that person sang sounded good) - Lenny Kravitz - Stand By My Woman, Let Love Rule and It Ain't Over 'Til It's Over. Yay Lenny!

Song that was most disappointingly hard for me to hear and recognize because I like to loudly sing along to it when I am driving to the mountains - Take Me Home, Country Roads by John Denver

Songs that were surprisingly hard for me to hear and recognize because I thought their sweet, simple melodies would be easier - Sweet Potato Pie by Ray Charles and Just the Way You Are by Billy Joel

Songs that I rather expected to sound like noise, but sounded surprisingly good - You Shook Me All Night Long by AC/DC, Give It Away by the Red Hot Chili Peppers, and Zombie by the Cranberries.

Song that I must concede to my mother probably is about sex (I swore it wasn't when I was in middle school) - Union of the Snake by Duran Duran.

Goldilocks Purgatory

Most of you know I took a leave of absence from work to focus on auditory rehabilitation. I wish I could report phenomenal progress, but it remains slow. Still, it is progress!

I really did enjoy a day of music on Sunday. I drove up to my parents and listened to my iPod playlist the whole way. My good auditory vibes lasted until about 1/3 of the way through the Grammys when my brain shut down. Since then, I haven't wanted to wear my CI as it has gone back to feeling like physical pain. I think I really overdid it on Sunday, just like my body gets sore from a CrossFit workout following weeks of inactivity, my brain was sore from the auditory workout!

When I first took leave, I started off listening to an audiobook, while reading along. I still cannot distinguish words without a text in front of me or lip-reading. It often just sounds like nonsense, babble, even beeps. I haven't done as much of that because a professional I am working with said that is a secondary sound source and would be much more difficult. However, she also said to "bathe in sound" so I may go back to it.

I had another mapping with my audiologist. It felt like it went miserably, like I was trapped in some kind of demented Goldilocks world - but in this one, nothing was "just right," not the porridge, not the chair, not the bed, and certainly not the darned CI processor. Every setting felt either too loud or too soft. I think we were both frustrated and it even reached a point where I felt like what I was hearing and what the computer was telling my audiologist I should be hearing were two different things. She had me on the softest setting and it sounded like the loudest setting to me, but I think it was my brain playing tricks on me. When I got out into the real world, it was better.

The best news from the new mapping was that sound wasn't painful anymore. Yesterday and today were the first days sound felt painful again since my new mapping and I think it was because I was fatigued.

When I say painful, I generally mean when I put it on or have it on and sound hits my brain, it feels like an electrical shock. If you are not a Buffy the Vampire Slayer fan, you won't get this, but I told my sister that I felt like Spike with a chip in my brain that caused physical pain at certain triggers, his being violence against humans, mine being sound waves. I felt like clutching my head and going "AARGGGGGHHHH."

Actually, I think I have done that a few times in the last two months.

That was happening ALL of the time before I decided to take leave. Work was miserable because of it. I couldn't put anything into the background and all these sounds were just assaulting me and hurting me and I felt like I was coming apart. I kept getting sick, I felt depressed, everything felt hopeless and I really wanted to just give up.

Since the new mapping and the CI volume has been adjusted to softer levels, this doesn't usually happen anymore. Keep in mind, that I am still far below normal hearing levels. I don't know how you people stand it!! :P

I also met with a teacher of the deaf named Sabrina who is now working with me regularly. She gave me a spreadsheet of auditory milestones at our first meeting just to lay the groundwork, and I remember looking over the list, which has milestones for babies and toddlers, and thinking, "Pfffft, it's not like I am that bad off!"

Then (drumroll) - reality check!

The first meeting with Sabrina was before the next mapping with the audiologist and when I had the next mapping, the audiologist did a sound test on me which I later learned was the Ling 6 sound check. It is 6 sounds - "Ahh," "Eee," "Ooo," "Mmm," Sss," and "Shh." The sounds are articulated and the deaf person is supposed to repeat which sound was said.

I couldn't distinguish one single sound from the others and it was a shock. I felt like I had been slapped and it made me realize, "Wow, my hearing right now really is just like a baby's."

Maybe that can help people understand what I am going through in this process. It helped ME understand what I am going through, at least after I got over the shock of having baby brain!

The audiologist also tried some colors with me but they all sounded like "blue."

Since then I have worked on the Ling 6 sounds and colors and other closed sets of words with my sister, her kids and my mom. When I went for my first official session with Sabrina, I did a little better with the Ling 6 and we discovered that I do have some advantages over a newborn in that I can detect syllables, duration and even some intensity in sounds. I just have trouble distinguishing what the sound is.

My mom has been working with me a few times a day. I'm making progress with the Ling 6. I can almost always differentiate the "Ahh" sound now, and I can usually even tell "Sss" from "Shh." Oddly enough, "Eee," "Ooo," and "Mmm" sound almost identical to me. What's really weird is that if I am looking at the person and can see the mouth movement, my brain seems to separate them into distinct sounds, but if I am not looking, it can't just yet.

We've also added family names because recognition of my name is another activity Sabrina wants me to work on. The names I recognize the best are Natalie and Jennifer.

I have trouble with my own name, Kelly and Kay. Is it something with those K sounds??

With colors, I have trouble with "red," but last night I got them all! My mom was so excited! I think she was more excited than me.

I had a little bit of a breakdown today because I just didn't expect sound to feel painful again after stringing so many good days together. I cried and my mom held me and told me to stop being so hard on myself and to give it time. I may be almost 43, but there is still nothing like being held by my mom.

So that has been my fascinating life with a new CI. It's hard to believe it has only been about 9 weeks since I was "turned on," Well, actually, I was turned on Sunday watching LL Kool J at the Grammys, but I digress... It seriously feels like months and months and that is part of my frustration, I think. Maybe because I have been "trying to hear," for almost 39 years of my life and I really, really want it to happen. Now.

Oh, and a shout-out to my Aunt Joanne. Love you and Uncle Sandy!

Peace.

The Dishwasher

I know there are people out there who think I am whining. There's probably nothing much I can say to change their minds. I try to put into words what this experience is like for a hearing person, but unless you have lived it, you're never really going to know.

Today I truly feel like there I have a dishwasher churning away beside my left ear. There is no dishwasher. I am hearing the same noise with or without the CI processor. I asked my sister if there was anything in the environment that could possibly be causing this sound and there isn't, which I knew, but felt I had to ask anyway.

Anything that could be causing this, like a real dishwasher, maybe a washer or dryer, or even the fishtank would not be audible to me without the CI. And I am "hearing" it even without the CI. So it is a phantom dishwasher. I did a web search and read a blog by another CI user who had the same issue after activation, and she had some comments after her blog by other CI users who also said they did as well. So "phantom noises" are apparently not uncommon after implant activation, but they are very frustrating. They are supposed to go away after awhile, but that could be in 5 minutes, in an hour, tomorrow, or even weeks from now.

It feels almost intolerable today. Recently I read an article about a man who committed suicide several months after getting tinnitus and today I can understand why he felt driven to do that because if this freaking dishwasher noise were to freaking never go away, it would drive me FREAKING insane.

Seriously, hearing people. Think about a loud dishwashing machine and what it would feel like to have it roaring in your ear all the time!!!

I don't know what to do.

I want a drink. I really want a drink. I want a glass of red wine or a beer or something that is going to shut up this phantom dishwasher!

If I get some Nyquil, will I have to pick up a white chip???

Cinematic Masterpiece

This blog is not for the easily offended. Do not read this if you are under 18 or on the prudish side. You've been warned.

So, I've gone from hearing imaginary tinktinktinktinktink sounds to imaginary grand, sweeping majestic music, like the kind that fills a movie theater as the film's title rolls. I feel like I am getting ready to step onto the silver screen - Carolyn Schmid STARRING IN The Ballad of the Cochlear Implant.

Wow. You know how all cinematic masterpieces get really bad porn spin-offs? Oh come on, you know... like Forrest Hump? Star Whores? Sperms of Endearment? Not that I would know from actually having watched such filth! Really! I pick up on things in my travels. But anyway, mine would even have a great porn spin-off - The Balling of the Cocklear Implant! Hahahahahaha! So it would be destined to become an Oscar winner or at least a cult classic!

Um, sometimes I seriously cannot believe I have a mind that works this way. I need deep, intensive psychological therapy. Or maybe a lobotomy.

I hope my mom doesn't read this blog. Or my brother.

All day yesterday I kept thinking I was hearing music. And thunder. Rolling thunder. I'm still hearing imaginary thunder, but the music has vanished.

In a battle between my hearing aid and the cochlear implant, the hearing aid is still winning in the superiority of the sound it gives me mainly because with the CI I am still having enormous difficulty differentiating different sounds when more than one is reaching my ears simultaneously. The CI is making small gains, though. I was able to pick out some lyrics in The Little Drummer Boy while listening and driving, I heard running water even more clearly, and my nephew played O Christmas Tree for me on the piano and I identified the song! My hearing aid has not even been in my ear for almost a week. I'm forcing my left ear to step up to the plate, as recommended by my audiologist.

I've been researching on the web and am feeling comforted by what I find. This page from the Dallas Ear Institute was especially enlightening - http://www.dallasear.com/webdocuments/CI-expectations-adult.pdf, especially this part -

"Our highest performers took from 6-10 weeks to adjust to the implant and did not need long-term therapy. Others are still receiving weekly therapy after 2 years of implant use. There is no way we can predict any person's adjustment to the device or the amount of therapy that will be needed. Many find the first few weeks or months to be disappointing, discouraging, and sometimes depressing. It is important to anticipate this potentially frustrating adjustment period so that you will continue to work hard with your implant and persevere with the programming and therapy."

So I think I am doing pretty good for 8 days later!

Phantom noises

Monday started off so exciting. I was eager to see what I could hear and couldn't wait to put on my CI.

As I sat in my car Monday morning, waiting for the engine to warm up a bit, I thought I heard birds. There was this staccato of sound that I couldn't relate to anything in my environment until I noticed birds flying around.

Don’t get too excited. I have heard birds before. But usually only when I’m outside, everything else is completely quiet and the birds are very close by. I don’t know that I have ever heard birds while sitting in my car with the door shut and the engine running.

Then I decided to try music again and I played Southern Cross, the Jimmy Buffett version. Right at the beginning there is this series of notes that I don't think I have ever noticed before. I can't tell what they are or what instrument makes them, but I was enchanted. Most of the drive to work, I found myself rewinding Southern Cross just to listen to the beginning over and over again. I actually felt a tickle in my head when I heard them. A pleasant tickle. Oh dear, no sex jokes here, please. Please, no. ACK, I'm making one in my head even as I type! GAHHHH!!!!

Moving on ... At work, as with over the weekend at home, I needed to really focus on the sources of sounds to figure out what they were. My filters still were not working well at all and most sounds just blended together into a loud din. The noise in the hallways between classes was pretty overwhelming.

Then by 2 p.m., my brain was d-u-n. Done. Finished. Over it. Caput. It didn't want to process anything else. Everything deteriorated into a roar of robotic noise, but I determinedly kept on my processor, even after work at the gym and at Target. By the time I got to Target, sound was starting to feel physically painful again. I found myself wincing often at the various noises hitting me.

Monday night while trying to fall asleep, I was visited by "phantom noises." You know how it is said that people who have lost a limb continue to think they feel pain there? I just kept hearing sounds that I knew were not there. My processor was off, I was almost completely deaf, but I kept hearing noises. It started off as a rapid, ceaseless ticktickticktickticktick, like an evil, berserk clock. Then I started hearing bells, beeps and whistles, and then the evil clock noise came back. Tickticktickticktickticktick.... I was up until 3 a.m. with the freaking evil clock ticking in my head!!

Unfortunately nothing has changed over these last two days. The ticking has gone away, yes, but all I am hearing is robotic voices, beeps and whistles. Loudly. Constantly. I thought I was going to lose my mind today at work.

My CI is off right now. If it wasn't for the hope that all of this noise is going to coalesce into recognizable sounds and voices, I don't think I would ever want to put it on again. I don't know how long it is going to take for me and when I feel like giving up, I remind myself it has only been 5 days. 120 hours, 1/2 that really when you factor in sleep and other times I have had it off. So let's say 60 hours of CI usage versus 38 years of deafness. I need to give myself time and I need to be kind to myself while I'm going through this. I'm not very kind to myself, in case you haven't picked up on that and that just makes everything harder.

New Attitude

Today when I woke up, I was excited to put on the processor and see what things sounded like. What a difference a day can make, huh? Not that things sound very different today, but what a different attitude I have!

Unfortunately, I put my processor on only to have the batteries die about 5 minutes later. These are special batteries. I can't just run out to CVS and buy more. The CI came with 3 packs of rechargable batteries, but the batteries in the processor were supposed to last 3 days and I .... uh .... hadn't gotten around to charging the rechargeables. What??? I thought I had another day! I can see my sister shaking her head now and thinking, "Carolyn, you goof!" Mercifully, it only took about 3 hours for the battery packs to charge.

New observations - I didn't know light switches could be so loud! Or footsteps.

And I finally heard running water today. My brother turned on the faucet in the audiologist's office on Friday to test me, but I couldn't hear it. Couldn't hear it yesterday either, but I did today.

My breathing still sounds very loud and the clacking of the keys bugs me. I have a headache and I have some nausea, both of which are apparently common side effects as one adjusts to a new CI.

Work is gonna be interesting...

Pulses

Wow.

Nothing, nothing could have prepared me for this.

I cannot even figure out how to describe the experience to people who have working ears in a way that there are going to get it. I don't think it is possible.

So let me just start by saying this is difficult. This may be one of the top 5 difficult things I have ever done, right up there with getting sober and leaving my husband. What I am getting right now doesn't sound like sound as I know it, the familiar comfortable sound I get from my hearing aid.

There is nothing I want to do more than yank this lime green contraption off my head and flush it down the toilet. It's uncomfortable. Painful even. But I know that if I quit, it is never going to sound better than this. So it is staying attached to my head and I'm determined to make it work.

So I'll just share what yesterday was like.

The first thing the audiologist had to do was check the electrodes. I have 12 electrodes threaded into my cochlea. They all work. She said sometimes one goes bad during the insertion. You have to picture how tiny they are, and how small the thread they are attached to is. Have you ever snapped off a piece of loose elastic from the band of your underpants? Think of how thin that piece of elastic is. That's about the size of the electrode array that is inserted into the cochlea. The electrodes themselves are maybe the size of the head of a pin. So it is easy to understand how one might go askew during insertion. Luckily for me, none did.

Then the audiologist had to "map" each electrode individually. Mapping involves emitting a beep or pulse onto that electrode and I have to indicate the point at which the "volume" is as high as it can get before it reaches a painful level. It was kind of like being back in the sound booth and having to listen for the beeps. At first I thought my heart was beating really loud and fast before it registered to me that I was hearing the beeps and pulses of the electrode mapping. I continued to think I was feeling it in my heart throughout the course of the electrode mapping, although the audiologist thought that was mostly nerves. Feeling it in my heart sounds so beautiful and uplifting, but truthfully, it didn't feel very good. It was very unsettling, like I was having arrhythmia issues!

After she had mapped all 12 electrodes, she played a string of sound along the course of the electrode array that reminded me a little bit of when someone plays scales on a piano. When she did that, I started to cry. It really hit me then that for the first time in 38 years, I was hearing with my left ear and it sounded beautiful.

After that was done, the device was "turned on." At this point, my sister and brother got to be the first voices I heard. They didn't sound at all like I was expecting them to sound. They didn't sound anything like how I heard them to sound with my hearing aid and they didn't sound anything like that beautiful string of sound the audiologist had played along the electrode array. It was hard to find their voices in the pulsations of sound that were reaching me. They sounded very computerized and robotic and their "real voices" seemed to be buried at the bottom of what was reaching my brain and I couldn't get them unburied. I could understand what they were saying with lip reading and I could match up some pulses of sound with words, but I had to concentrate very hard and it made my head hurt.

I am so, SO grateful they were with me, though, and that their voices were the first I heard. Much love to you, Kelly and Jeff!

Then the audiologist did a word test on me. She covered her mouth and said the days of the week, but not in order. The only one I could get was "Tuesday." Then she did the same thing with colors. I was able to get "blue" and "purple." I was very excited to get purple. Kelly told me today also that it was really amazing for her to see me get purple.

Then the audiologist did have to do the sound booth beep test on me and she said my results were good for the first time after having it turned on. Then we talked about care and treatment of the processor and its components. I have a remote control! I got a lot of stuff to take home with me. I also need to be very careful that my processor doesn't end up in the bottom of a fishtank the way my hearing aid did...

My ear doctor wanted to see me. Kelly and Jeff had left by then. I sat in the chair in the doctor's office, turning the pages of a magazine and it sounded very loud to me. Each page I turned made this distinctive "FWIP!" sound. I found myself turning the pages back and forth because I was so fascinated with the FWIP FWIP FWIP I was hearing.

After all that, it was late and I had a soiree to attend at a friend's house, but I had to wear my hearing aid for it. I couldn't follow anything without it. I left my processor on also and I had to fight some dizziness. I've been on every antidepressant under the sun trying to find one that works for me and the sensation I get when I am coming off an antidepressant is one of sporadic waves of dizziness assailing my head. It felt like that. It still feels a bit like that. I think it was just the sound pulses.

On my drive home, I tried to listen to Christmas music and pick out what song was playing, but the only one I could recognize on my own was Jingle Bells. Everything else started to sound like ... wait for it ... you will never in a million years guess what the Christmas carols sounded like to me ... The Stray Cat Strut. Yes. That 80's song by the Stray Cats. Could I make this up?? I kept hearing, "... with my tail in the air ..." At the risk of sounding blasphemous, I don't think the "round yon virgin" had her "tail in the air." Oh God, I'm going to Hell, aren't I?

Finally I just turned off the music and talked to myself. I said street names as I passed them by. I pronounced the names of restaurants like "Taco Bell" as I drove past. I recited license plates "GTJ 3827, WCX 1823, VCK 4590" just trying to associate what I was hearing with what I was saying. I even saw a Dallas Cowboy star sticker on an SUV and said, "Dallas Cowboys," and right after that "Suck ass" came right out of my mouth, but that was completely spontaneous and unintentional. :)

When I got home, I watched some Friends episodes with the processor on and I kept hearing this pulsation of sharp noises even when no one was talking and it took me awhile to realize I was hearing the laugh track.

Today I am finding myself very distracted by my breathing. It sounds like a loud "uuhh WHOO," especially when I take a deep breath.

My sister told me today that the audiologist told her and Jeff that I would hate the way everything sounded at first and to make sure I kept it on. My sneaky siblings kept that from me yesterday.

And the keys on the laptop sound very loud!!

So that is where I am now.

MTC.

Audiobabble

Yesterday I pulled up to my sister's house just as they were getting ready to go to Joe's Diner to take advantage of a Living Social coupon, so I hopped in the van and joined them. An audiobook was playing and I tried really hard to pick out some words, but when I started hearing things like "smash the pancake" and "skunk in soccer universe," I knew it was futile. I even thought I heard "Potter" and was convinced I got one word right, but since I was hedging my bets and thinking it was a Harry Potter audiobook, all I did was demonstrate the power of suggestion. The audiobook was, in fact, from the Percy Jackson series and Harry Potter does not have a cameo.

It gave me a neat idea, though. I decided to pop in one of the Harry Potter disks and see what words I could pick out from the audiobabble and then, in a few months when my implant is activated and my brain is hopefully processing sounds more efficiently, I'll listen to the same passage and see what, if any, difference there is. So I popped into my computer disk 11 from Harry Potter and the Deathly Hallows and turned up the volume. It started at Chapter 24b "Malfoy's Manor," and this is what I got -

Blah blah blah blah blah blah … Said … blah blah blah blah blah blah blah blah blah … blah blah blah … blah blah blah … blah blah blah … Get …. blah blah blah … blah blah blah blah blah blah blah blah blah blah blah blah … Said Ron … blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah … I want you to … blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah … blah blah blah … blah blah blah … She asked … blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah … group of pains … blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah …world book… blah blah blah blah blah blah … chair …. blah blah blah blah blah blah … blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah … walking postcard … blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah … Harry, Harry Potter … blah blah blah … books that you … blah blah blah blah blah blah blah blah blah … blah blah blah … means …. blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah … gray back … blah blah blah … blah blah blah blah blah blah ... said Hermione … blah blah blah … said Ron …blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah moves the night … blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah.

Yep, that's what it is like for me to listen without the benefit of lip-reading or good context cues. This is what I hear when announcements come on over a loudspeaker, when I am in a class at the gym, when I am with a group of people having multiple conversations, when I try to pick out lyrics from songs.

Between my lip-reading abilities and a skillful, yet prudent, employment of the "deaf nod," I bet I fooled a lot of people over the years into thinking my hearing loss is not that severe. Didn't I? Admit it! :) Several years ago, one of my sister's friends asked her, "Is Carolyn's hearing getting worse?" and Kelly replied, "No, she has just stopped pretending!" I'm really, really good at faking it.

MTC.

Anxiety

This has been a rougher process than I thought it would be, truly. I thought that I would feel like going back to work this week and that I would even feel guilty for not doing so, but I am whupped. I can't imagine what Monday is going to be like because I can't imagine feeling like myself again by the end of the weekend. I think I am going to be very, very tired by 4 p.m. Monday.

I've been struggling with anxiety, depression symptoms, all that fun stuff. A friend of mine is the psych field told me that is not uncommon after something like this, but I feel like I should be excited and happy. Instead, my thoughts won't stop racing and I can't quiet them down. I have extremely dark thoughts at times like these. I often get a loop in my brain going, "I hate myself, I am so stupid, I hate myself, I am so stupid, I hate myself, I am so stupid, I hate myself, I am so stupid, I hate myself, I am so stupid, I hate myself, I am so stupid, I hate myself, I am so stupid, I hate myself, I am so stupid, I hate myself, I am so stupid, I hate myself, I am so stupid, ihatemyselfiamsostupid
ihatemyselfiamsostupidihatemyselfiamsostupidihatemyselfiamsostupidihatemyselfiamsostupidihatemyselfiamsostupidihatemyselfiamsostupidihatemyselfiamsostupid...."

Wash, rinse, repeat. It would be comical if it wasn't so grim. If any of my nieces or nephews - or any of my loved ones - revealed such a thought process, I would be horrified that they couldn't see themselves for the wonderful treasures they are and I am sure they feel the same about me, but, this is my reality. This is how uncomfortable I am in my own skin.

I wonder how much of my poor self esteem is rooted in my hearing loss and if its salvageable. I met with another woman who had a severe/profound hearing loss and had a cochlear implant in her 40's and she told me that she became more and more withdrawn - severely so - until her husband said to her that he didn't even know her anymore and she was like, "What is happening to me?" She said it all changed with her CI.

I don't want to have that kind of expectation, but I hope, really hope, that it will be enough of a success that I don't feel so much like I am going through life in the shadows anymore. I hope I can stop feeling that I am not really here or a part of anything because I feel so disconnected. Given that I have Bipolar Disorder II, though, I have to keep my expectations low for how a CI may benefit me from a psychological perspective. It's not going to be like a miracle pill.

I thought that I had come so far in accepting my Deafness and how it shaped me, but going into Deaf Ed and then having the cochlear implant surgery done is bringing a lot of issues roaring back and I don't much like that part. It's scary.

Recovery is not linear.

It really occurred to me today that recovery is not linear. I felt so well yesterday that I thought I had passed the hump. It's not so simple a matter as walking the line from point A to point B. Today I not only feel incredibly run-down but there is more discomfort in my surgery area than yesterday.

When I run my fingertips over the implant area, it feels a bit like what I would imagine Frankenstein's head feels like. Lumpy and protruding in odd places. Not that I give a lot of thought to what Frankenstein feels like. Seriously. That would be really sick. Although now that my thoughts are going there ... when Frankenstein was being created, I wonder how large of a penis he got? If you have your pick of appendages, I would hope you wouldn't shortchange your creation. He might want to get a little nookie someday, you know? Forget all that "It's not how deep you fish, it's how you wiggle your worm," bullshit. Size matters!

I kid! I kid! So please, if you are a male who is not as well endowed as John Holmes, don't walk away from this blog feeling like a lesser man. Think of it as a little payback for the last time your eyes popped so hard at Scarlett Johanssen's cleavage that you got an elbow in the ribs from your significant other.

(And yes, I realize for you purists out there that Frankenstein was actually the doctor who created the monster and not the monster himself, but it just doesn't have the same pow and sizzle to say "it feels a bit like what I would imagine the head of the monster that Dr. Frankenstein created feels like," does it? Does it???)

The hair is starting to grow back from where my head was shaved for the implant and it's all fuzzy there which feels really cool to me. I always did love a buzz cut. My Grandpa Schmid had one and when I was a girl, I loved to run my hand over his head. I like to think that is why I later developed such a fondness for military hairstyles, and thus military men, that my mom dubbed me the "One Woman USO."

I almost made it through the day with no pain pills yesterday, but I ended up having to take one last night. I was just hyper aware of the discomfort and couldn't sleep. Maybe tonight I'll make it.

My tongue is still a huge, swollen mass that feels badly burned. It hurts to eat almost as badly as it hurts to brush my teeth. Unfortunately, that doesn't stop me from (over)eating, but I seriously think maybe I need to go on a liquid diet until it feels better because everything else hurts my mouth.

But yeah, back to my earlier thought. Recovery is not linear, no matter what. Whether it is alcoholism, bipolar disorder, or just life. It's never a straight path, is it? That is both the beauty and the arduousness of it all.

MTC.

Tongues and Slugs

It is Day 8 after surgery and I finally am not completely aware of the pain/discomfort in the left side of my head!

I was a bit worried about the pain pills given my addiction tendencies. I mean, hello! Recovering alcoholic with replacement addiction issues! I could totally see myself turning into the Codeine Whore on the Street Corner, pimping my old, sad body out for the next mind-numbing fix of pain pills.

Mercifully, especially for my brother who would be horrified and is probably even now clutching his hair and shouting, "TMI! TMI!," the pills don't really do that much for me.

I got 40 of those oxycodone babies with a stern warning on the bottle not to exceed 8 in a 24 hour period. A little math there would show that I could have been done with them in 5 days and still been within prescription guidelines, but it is 8 days later and I still have about 8 pills left. There were a lot of 8's in the last couple of sentences. It must mean something significant, like I'm going to win the lottery in 8 days. I need to remember to buy a ticket.

A weird side effect of the CI surgery is that I have a super bad taste in the left side of my mouth. Apparently there is a taste nerve near the surgery site. There is also a facial nerve. While drilling, the doctor either had to go near or actually touch one of the two and he opted for the taste nerve. Good call, doctor. Seriously. Bad taste is better than a drooping face. I'm getting old and wrinkly enough; I don't need any help in that regard.

And now my tongue is all swollen and disgusted and feels like I burned it badly. Like when you gulp hot chocolate before it has cooled and end up frying the skin cells on your tongue. It hurts to brush my teeth. It burns! It burns us! Sorry, channeled a little Gollum there. I don't know if that - not the Gollum channeling, but the tongue issue - is from the taste nerve also or from the pain meds. Seems like I might have a sensitivity to oxycodone given that it makes me itch and another possible side effect for oxycodone sensitivity is a swollen tongue. Nice.

Makes me think of that Peanuts cartoon when Linus is all like "I'm aware of my tongue!" and makes Lucy aware of hers, so of course she wants to slug him a good one. Slug and tongue are not two words that reside in harmonious juxtaposition, by the way. Now I'm thinking of my tongue being slug-like. A huge, oversalted, dried out slug. But look on the bright side ... at least I'm not Codeine Whore!

MTC.

A Blog By Any Other Name

I tried to think of a clever blog name and let me tell you, that was tough. All the cool names that popped into my head are already taken. Purple Cow? Gone. Wonder Muffin? Taken. My "Bad" Life (which I wanted to be a play on Bipolar, Alcoholic, Deaf)? Yeah, right.

So then I started inputting every combination of words that had anything to do with things I like and "Psychedelic Sunflower" was the first free one. I was so excited to finally have a catchy - and available - name that I didn't really think of the ramifications. It's trying a little too hard, isn't it? I've opened myself up for a lot of teasing. It's kinda me, though. Anyone over 30 who picks lime green for their cochlear implant processor color has a touch of psychedelia in their personality. I think I will keep it.

I've tried blogs before and never stuck with them. Anyone who remotely knows me won't be surprised at that. Follow-through is not my strong point. I have a lot of goals for this blog, though - achieving lasting weight loss and physical fitness, managing my bipolar symptoms, dealing with recovery from alcoholism and finally, sharing my cochlear implant experience with my friends and interested acquaintances.

That's a lot, huh?

Any one of those would be big. Weight loss. Deafness. Bipolar Disorder. Alcoholism. And I have all four to contend with. Almost makes me want to curl up in the fetal position and suck my thumb. I was never a thumb sucker, though. That was my brother and sister. My brother especially. My sister was also a hair twirler. And she liked to chew on non-edible things, including the feet of her Barbie dolls. I was not a sucker of thumbs, chewer of non-edibles or twirler of hair, but ... I seem to be getting off-track here ... rearrange! Focus! Deafness! Cochlear implant!!

I lost most of my hearing when I was four. Meningitis. I'm 42 now. I have no discernible hearing in my left ear. My right ear has a loss in the severe-profound range and I have worn a hearing aid in that ear for 38 years. I've managed to get by just fine and thanks to a sharp mind and keen intellect (thanks Mom and Dad!), I've been pretty successful.

I'm an exception.

I didn't know the statistics of this until I started take classes in Deaf Ed, but most deaf people with, oh, a moderate or worse hearing loss typically are not close to equivalent to most of their hearing peers. As students, their reading levels are significantly lower and they are much more likely to go on to both forgo college and accept lower paying, more menial jobs.

So I have been lucky.

Nevertheless, even though I grew up in the hearing world, I have always thought of myself as "deaf," probably more so as an adult. I have a strong sympathy for Deaf culture and individuals and the idea of a cochlear implant was actually pretty repellant to me for a long time. Deaf culture... that's a whole other blog post or two. We won't get into it here.

When I started taking Deaf Ed classes, I was exposed to a lot of information about CIs that I wouldn't have sought out on my own. I also had a wonderful classmate named Megan who has two children with hearing loss. Her daughter is bilaterally implanted and the impact on her life has been amazing. My thinking started to shift from "CIs are evil" to "Maybe CIs can be life-changing for some people."

Then one weekend in July 2011, my cousin Janet came up from Florida. She was my mother's brother's daughter and I had never met her before. More relatives joined the fun. I remember sitting in the blue chair in my mom's living room, all these excited, happy voices flying past me in multiple conversations, and feeling utterly and totally alone. It has been like that for me a lot in my life. And I thought, "Why not a CI? If it would help me be a part of life and not some person who has to lurk on the outskirts of most social activities, why not?"

And on November 15, 2011, I had a cochlear implant done on my left ear.

MTC.