Last Monday, I woke up... everything was pretty normal.
I took a shower, got dressed, and grabbed my Cochlear implant... I walked down the hallway, got the battery, plugged it in, turned it on... attached it to my head... and then I heard this HUGE MASSIVE TREMENDOUS ROARING sound that almost floored me. I thought I was in the midst of a nuclear explosion, or a helicopter was hovering over my house.
My eyes bugged out as I looked around trying to ascertain the source of this HUGE sound... then I realized... that's the heater.
So I opened the utility doors, and there was nothing wrong. It was running normally. So I said out loud "what the F%%#?" and my own voice sounded like I was bellowing at the top of my lungs and then some.
The heater shut off, and I whispered to myself, almost to my cats... "what is going on?"... and it was still like I was yelling.
I thought... okay... this will pass. I turned the volume down to 1, and the microphone pickup down to 1... it was STILL TOO LOUD, but manageable.
I went into work... and worked my typical crazy Monday... having the pages behind me tearing tape (sounds like a Jet crashing into a 300 ft deep pool of Jello with glass), crumpling paper/wrappers (sounds like Metallica amplified to 14)... by noon, I had a massive, splitting headache and went to the MEI office...
There was NO ONE available to speak with me. So we set an appointment for Thursday afternoon. Which meant I was going to have to deal with this freaking sonic boom of sound for the nest 4 days.
I went back to work and the tinnitus started to hit me... it was hitting me because I turned down the mic sensitivity to 1, and my brain was in "where's the noise? I know there's more noise? Gimme it all, you sweet bastard!" mode. Yes, my brain swears like that. so I had to kick the sensitivity up until the tinnitus went down... and I started slamming down Tylenol to subside the headache.
I went home that night, and walked around very gingerly... avoid all manner of noise, but I still went for a 1 mile walk in the evening... and it sounded like I was randomly run over by garbage trucks without mufflers (it was really just lil' Focus's and Civics and crap driving by... good lord).
Long story short, for the next three days, I listened to the world at sonic boom. The sounds were so loud, I found myself involuntarily cringing from the simplest sounds... the fan on my computer, the tape, teh paper wrinkling, the sneezing, the doors slamming... and sound of my Flash drive and Cochlear remote clinking together... shit, the sound of spit in my mouth when I merely opened by jaw a millimeter.
Thursday afternoon, they give me a baseline test. This creates some sounds to see how your nerves react. It creates what might have been the loudest sounds I have EVER experienced in my life. I have near constant tinnitus at this point from the barrage of noise to go along with... and this isn't my normal audiology/otologist either... She determines that my baseline was so far off the program in my Cochlear that it didn't make sense. My cochlear was amplifying as much as 35 decibels ABOVE my baseline.
I'm like.. wait... WHAT? My hearing IMPROVED?
No, just my sensitivity to sound. It doesn't mean improvement. It means a shift in how my brain perceives sound. It could be because my cochlear has been programmed at 250 pulses, and my brain has decided this is just too "easy" or too slow. I hate when my brain makes decisions without consulting me... in any case, the audiologist set me up with a new program base don 900 pulses a second, which creates a terribly "inaccurate" sound to me that is sharp and bereft of warmth... very strange that only if I start speaking like Mickey Mouse does my own voice sound "loud".
So now I'm "back to the beginning" to locate my baseline again. All the improvements I've had in comprehension are out the door because my ability to perceive sounds from the cochlear has shifted... the new baseline must be located.
Anyone tells you that a Cochlear Implant is easy? It ain't.
Before I was implanted with a Cochlear, for me, I asked myself a simple question:
Am I ready to be deaf? Not just sorta deaf, but completely deaf?
And I found myself just stating that it was "get busy hearing, or get busy being deaf".
Not many people really drew a line there, because no one really understood what I could or could not hear. My parents always assumed i heard MUCH more than I did... close friends sometimes had the same issue. Then family would sometimes just talk to my mom and dad about me, because they knew I wouldn't hear them. Alas.
In any case, as I get further and further into this... sensory warp of life, I'm realizing I never was aware how much I may have been missing.
I'll digress here... There's an argument that there is nothing wrong with being deaf. It is not a handicap in any way, shape form or fashion. I'll agree entirely with that. But it doesn't change that there is a whole world of sensory input that isn't fully available to a deaf person. Even a "partially" deaf person. Until you LOSE it... you have no idea how much you really had.
I am still hearing things I do not recognize. It is not even spring yet. You have NO. IDEA... how excited I am about the idea of hearing the birds sing. You have no idea how excited I am about hearing wildlife. I want to walk in the woods, and hear my feet crunching on the dried leaves of spring and summer. I want to hear the water running through the river. I want to hear the leaves brushing in the breeze. I want to hear the "Man eating sparrows" (cicadas).
In the mean time, I heard my cats walking by me last night. Not the "thundering herd" of chasing, but daintly traipsing down the hallway on pergo floors... a clickity clackity sound, which I identified at their nails.
I want to get a clock for my house... just so I can hear it tick.
Music is still not working well for me. Some I can hear, but I'm mostly pissed because nothing sounds the way it did. Pink Floyd is mostly a muddle to me. MCB is just random noises. Primus is workable, but nothing like it was. Van Halen is just screeching. Chapstik, just sounds like brakes exploding repeatedly. It's weird.
So as far as music goes, my memory is my enemy right now.
I realized something... deep thoughts alert!
The more I can engage in conversations, the more I realize there's a responsibility that goes along with it. It's not something that would occur to anyone else, I think.
That responsibility being, when you're deaf, or nearly so, you have no expected responsibility to engage in a conversation. People accept 'he's deaf, so he won't be able to follow". People will ask you questions, and just expect the answer. There's no flow to the conversation. It's just an interrogation.
Now, people expect me to follow and carry on a normal conversation, just all of a sudden, out of the blue. What they forget, or never considered, is that I have no skill set at this point for carrying on a normal conversation.
I have to learn that. My conversation style has always been built from... well... BBS's, chatting, IRC, and IMs, which are conversations, but not NORMAL.
A normal conversation is just different. And I don't know all the ins and outs of it properly, so it feels awkward at times as I try to exercise this new found responsibility and engage in conversations. I like it, but it just feels awkward to me.
Doesn't mean I'm not enjoying it: I AM! I've had conversations with people, even family and friends, that are more involving than any I can recall. I've spoken at length with aunts and uncles longer than I ever have before. I've laughed at and along with jokes, instead of just laughing because everyone else was. It's wonderful, this feeling of involvement... and scary at the same time, because of that element of responsibility I discussed previously.
Alas. It will take time. I may never be perfect. But I'm trying, and I appreciate your patience with me, and understanding over my new found paradigm of social awkwardness.
I was very surprised to find the local AMC Livonia has deployed a very nice closed captioning system for most of their screens.
On Friday, we went to see The Hobbit, but the system was broke (so we saw The Hobbit for FREE!)
Saturday, we went to see Lincoln, and the captioning did work for that screen. The technology is called Doremi Captiview (http://www.doremilabs.com/products/cinema-products/captiview/) and it worked fairly well. It had some signal issues, but otherwise, I was able tof ollow a very wordy movie that would have been useless to me without.
Earlier in the day, I'd emailed Emagine theaters, asking when they would put Rear Window or other Caption tech into their theaters. I was advised that they're "testing" the Doremi Captiview at the Royal Oak Emagine theater. They would do deploy more until the status of a law requiring captioning in theaters is fully vetted. I ended my discussion with them by making what I feel is a relevant point (even though I know the answer is "money"): Why does it take a law to get this technology into theaters? Seems silly to me to ignore a portion of your audience like that...
Guess I haven't written anything in awhile. I think I wanted to just have some great big, awesome thing to say... and the closest I can come to that is:
I can hear.
Yep. The Processor for the Cochlear WORKED. I can hear. And good lord, what the hell am I hearing?
This is a really loud world you folks have here... how the heck haven't you all lost your minds already? I'm hearing stuff that makes no real sense to me.. and realizing how much of the world of sound I missed...
The sound of a turn signal
My Dad and I went out to dinner. He's driving. I'm listening to things as we drive, and I hear the really, loud sound... just for a moment.. trying to place the sound. It's really quite loud. I do not recognize the sound...
We drive a little further, and then I hear it again. This time I ask... "Dad, is that a siren in the distance?"
"No, I don't hear a siren. What are you hearing?"
"a siren, I think. it comes and goes..."
then he makes a left turn into the restaurant parking lot... and I hear it again. This time, I'm looking right at the steering wheel, and the sound is in time with the turn blinker.
I burst out laughing... "Oh! That sound was the turn signal."
The cadence of the turn signal was similar to a police siren (at least in my aural memory of a police siren) and I thought the turn signal was a police siren. yeah.
Typing. Shoes hitting the floor as you walk. Shoes squeak. Phone busy signals. Wind Chimes. The Wind (sounds much different now). My cats...
I had a discussion with my nephew about my implant. I told him "Your uncle Mike is a cyborg now. You know what that means?"
and then he points at my shirt, where the remote for my Cochlear is under my shirt.. .and the light came on it.
"You're like Iron Man!"
"Well no.. Yes. I am Iron Man."
and now he's been going around, telling everyone his Uncle is a cyborg, repeatedly advising his mom....
"you know uncle Mike is a cyborg, right? Like Darth vader."
It's not just that the conversation is adorable and cute... it's that I heard his squeaky little voice and know what he said without anyone interpreting it for me. I heard my nephew.
When I came home from the processor hook up... I was by myself. I walked into the house, hearing my cavernous foot steps.. listening to the sounds of my house... the floor squeaking, the sound of the toilet flushing (WHHOOOOOOOOSH!)... sat down in the chair by my computer... and sent a note to Facebook: "I can hear". Then I just broke down crying... because I knew I'd have moments like that. Where I would be able to talk to my nephew.. and hear what he says. Here him laughing, because Uncle Mike is such a funny guy... hear him say "Good night, Uncle Mike. I love you."
Yeah. I'm 41 years old.
I broke my leg this year. Lost my hearing. Got it back. and I cried.
I think I'm experiencing emotional side effects of everything that has happened these last few months.
I found myself very angry, snippy, and probably way too rough for no real reason today. I took it out on someone else, alas. It's too late to subtract the words.
I think the question I forgot is this: Did you do it for a good? Were your goals good?
I think they were. So tomorrow, I have a meeting, and I'll apologize for being a snippy, grumpster...I hate losing control. I have all these excuses to lose control, but I don't want to. Dammit.
On the "shiny happy" front... Doctor looked at the implant and said everything is good, but it was kind of an odd visit. Like "let me check and make sure you haven't torn my handiwork out" type thing.
yes, the incisions are healing. Yes, it looks correct in the ear.
And that's about it. Just felt short and rushed.
Well, I am almost there as far as being cyborg. The Cochlear Nucleus 5 has been implanted into the right side of my skull.
First off, I'll say this:
If they tell you this surgery is "easy"... smack em down. Hard.
It is not easy. I am now 1 week post surgery, and still suffering pain in the right side of my head. The surgery itself was horrendous.
It is NOT minor surgery. It is a horrid joke that the surgery is treated as outpatient. My ass should have been resting in a hospital bed for 3 nights after the surgery, MINIMUM.
My surgery was scheduled for 1pm. I arrived at 11am, and was immediately shuttled into the back for prep. Popped into a gown, belongings in a plastic bag for several hours keeping.
I had no questions before this. I got wheeled into the back after downing a shot of a very very very bad tasting anti-nauesea med... laid on a table for 5 minutes or so, saw the gas mask set down in front of me... and started drifting off.
Next thing I know, I wake up. It's 10 fricking pm, and I have no idea where the hell I am, or how the hell I got there. My mouth tastes like vomit and bile. I know I'm in the hospital, and just had the cochlear done, but I have no idea why I'm in a room with little fighter planes on the wall. I croak out "Dad! Dad!" but he's not there. I see my phone and page him. "Where are you??" (he left about 8pm because I was still zonked out. apparently drifting in and out, a period I have absolutely no freaking memory of).
My neck hurts horribly. I reach over and feel the right side of my neck, and it's like a python running down the right side of my neck (I was told this is because my neck was left free hanging for 3 hours of surgery). My neck is STILL sore, and there's bruising.
If find the remote. Look up at the TV. It's blurry... I don't have my glasses on. I try to put them on, but there's a large cup over the right side of my head, and tape running around my head. I have no idea when or how it got there. I can make out that the Tigers game is on... and they're losing, of course.
I push for the nurse comes in. She explains my dad left awhile ago. I ask for food. I am starving. Haven't eaten in over 24 hours. There's no food at this hour, but she can get me something... she brings me a choice of sandiwches, and the only one that looks remotely edible is a turkey on white bread. It tasted like sponge.I talked with the nurse for awhile. I was still unstable emotionally... and pored out a ton of stuff, wondering "why did I do this to myself?" ("so you can hear again!"). She was very understanding.
I need more food. They start bringing me popsicles... Sprite... and crackers.I play with the iPad... good, I have Internet there. I take a pic of myself and post it to Facebook.
I cannot fall asleep. I've been asleep all day, man. I watch a string of "Restaurant:Impossible" episodes (I think it's funny that he lives in the same neighborhood as my aunt and uncle) and I finally drift off around 3am, I think... then I'm woken just before 7am by a Dr I do not recognize poking me like a 10 year old checking to see if that Squirrel is really dead. Can't hear em, of course.
I gather that he's checking on my condition, and going over what I need to know to be released from the hospital today.
Now, I haven't slept very much that evening, and I'm now in horrible throbbing pain. My right ear hurts, which I explained ("that's normal"), my neck hurt terribly ("... you neck was left free hanging for 3 hours") my throat was incredibly sore ("...that's because there was a breathing tube down your throat and you threw up.") A set of rules I must follow. Do not cough with mouth closed. Do NOT sneeze with mouth closed. Do NOT bend over. Do NOT lift anything over 10 lbs.
9:30am, my Dad arrives, and 10am we're out the door. 10:30am I'm home at my dad's house...
within an hour or so, I start to find my ENTIRE. BODY. HURTS. I mean, head to toe. I have this terrible need to cough, but cannot. It hurts too damn much to cough. I can barely get up and move. I mean, total absolute paralyzing pain. I'm like "what the hell did they do to me? No one told me to expect THIS..." My chest feels like I must have died on the table and they did manual CPR to revive me. It hurts to breathe. The only thing I want to do is inhale popsicles like oxygen. But I can't, cause I am prying myself up with force of will every 30 minutes to pee.
I start to notice my senses are seriously messed up. I ate some fruit, cherries or grapes... and it smelled like raw meat. It rained on Friday or Saturday (maybe both) and it smelled like an old dusty vacuum bag being opened up. The smell stuff has mostly passed, but my sense of smell feels "dulled" from normal. As does my sense of taste, which is seriously messed up. It's like... my sense of taste was once a nice 12" plate, and it's now only a 3" plate. Sweet stuff tastes good, but it also tastes salty? I made steak tonight, and it had no real flavor (my dad assured me it was extremely tasty steak). The A1 sauce I used on the steak tasted... well, not like A1, but more like congealed diesel fuel would taste with a touch of lemon.
Over the next few days, the pain starts to subside. By Sunday, I'm feeling much less sore. By Monday, almost gone. Tuesday, I was back to work. I worked for 4 hours before the pain started to cause me to be unable to concentrate. I mean, it's dull and numb a bit, but it also hurts. At times, it's like piloting starship Michael instead of being myself. I'm a tiny little man in my left eyeball, steering the ship... getting input from systems, but somethings wrong with the wiring.
On the plus side, my leg isn't bother me much, if at all!
Addendum: As of Friday, 9/14, I'm feeling much more normal. Still feels like I'm healing from getting whacked behind the ear with a baseball bat, but otherwise, my life is normalizing again. I did not need to take a nap. I'll work a normal week next week, and post again after my follow up appointment on Monday.
I'm wondering... when they connect the processor, what if I don't hear reality, but instead, hear the internet? Can I train Web Mind? (READ WWW: WAKE, WWW: WATCH and WWW: WONDER by Robert J. Sawyer!
Sometimes in your life, there are spans of time when the definition of your life is writ large, across the face of reality like graffiti. Everyone within eye sight, ear shot, a tongue flick can see, smell and taste everything that is about to happen... and have no idea what it feels like.
At this moment, my life is a storage closet of chaos. Life without definition, but full of cluster, sound and fury.
I just spent a half hour researching Cochlear Implants. I read someone elses blog on this process and broke down crying because it just hit me how freaking much... yeah, i can't even verbalize it yet, really.
I haven't heard much of anything since May.
My leg is healing from being broken.
I have ingrown toenail in my left big toe... which sucks terribly. Yeah, that's what I needed there: MORE FUCKING PAIN IN MY LEFT LEG...
Tomorrow, I am getting a CAT scan for the express purposes of getting a Cochlear Implant.
I am beyond fucking terrified. I want to jump in my car and drive away, I want to hide and pretend everything is okay. Just tell me it's okay, and tell me it'll be alright. Jesus, I'm sick and tired of this year. Everything is breaking and I'm having to stand strong and tall and pretend I'm the one who isn't affected... that I'll always be the tough guy, but this tough guy just wants to run away right now.
But I can't. Because this cochlear implant... if it works...
I'll hear my nephew again.
Maybe I'll hear my brother's new band.
Maybe I'll understand you all better, and be more involved socially.
MAYBE. I HOPE. I CAN HEAR.
How impressive. How horrible. How ridiculous. How sane. How completely and utterly impossible... or is it?
God please, let me get through this year. Let me hear everyone. Their voices, without having to ask twice. No more "what?"
This is the next step, isn't it? Evolution. I will be assimilated into the collective. My technological distinctiveness will be undeniable, and overwhelming... if I hear you all, and don't have to hide in the background anymore... can participate in group discussions... will I scare you? Will you accept this me, the real me, the hidden me?
Logically... It came down to to the Ellis Boyd Redding question... "get busy living, or get busy dying", just changed around to "get busy hearing, or get busy being deaf".
I don't think I could ever forgive myself if I didn't try. I really want to hear YOU.
I really want to hear my nephew, my cousin's kids... I even want to be able to say if modern music sucks, and not just be parroting someone else... I want to hear all that music I heard, the real thing, and not the tinny echo of my memory. I want to hear the argument across the table, at the meeting, or in the restaurant. My God... all I want to do is hear the sound of birds singing, or the cicada's (man eating sparrows) serenade... the toads on the pond, the sound of rain, thunder, and lightning... count how far away it is in miles, from flash to thunder. I don't want to make up your voices in my head anymore... like an equation of being able to tell what you sound like, just from what you look like.
or making up the sound of the room... here I sit typing, a fan next to me. I know I can't hear the fan, but my mind is making the sound of the fan. Cause it knows the sounds should be there, but it's not, so it makes it up... so it sounds like a fan, with someone playing a mournful guitar solo, bursting up high, holding the note in tremolo, and falling down, sadly, see the drops fall from the sky, like tears from my eyes.
You have no idea how lucky you are. No idea... just to hear the sound of a car door shut. That annoying screech of a baby crying. The nails on the chalkboard... just theories and memories at this point... relish I want in my life, once again.