Bionic Travels: "What's That?"

My frequent inquiry of family and friends has shifted from “What?” to “What’s that?” Communicating with me has required a great deal of patience for many years (much to the chagrin of the teenagers I raised during those years.)  I was more than a little worried about the patience that would be required of people now that I’m wearing this cochlear implant. The comments 15 days after my CI activation are nothing short of miraculous:

“You are hearing me.”

“I don’t have to talk as loud now.”

“I asked you that question from upstairs and you answered me.”

“Wow! You can hear me! I’m so happy!” x3 in the same 30 minute conversation

“I’m talking in a normal voice.”

“Did you realize…..?”

All those comments = no one feeling impatient with my constant new question:  “What’s that?”

I am a pretty quick study in most things (statistics, chemistry and calculus aside), but I didn’t expect to be ‘a quick study’ with this CI. Don’t tell my audi, but I’m not really even practicing. All I have done is watch three pilot TV shows on Netflix: Glee, Ugly Betty and Switched at Birth, the later one being brand new to me. I want to see it again and see how well I can follow the signing. I am seriously behind the times in the TV department, but I don't care.  My assignment was to watch shows with closed captions and wearing only my CI (and pants or a dress, of course.) That I did.  I can understand what’s being said, but I’m well practiced in closed captioning, so it’s tricky to know how my brain is being trained. (Trained by Glee and Ugly Betty? Scary, indeed.) 

The question at hand relates to environmental sounds. It’s a noisy world we live in!  I understand how deaf individuals might not want to enter the hearing world.  I have always heard voices (no comments please) and environmental sounds, just not very well for about 15 years. Some of them faded out completely. The ones that abandoned me are the ones I am starting to ask about.

“What’s that?”

“A blue jay, Andi.”

“What’s that?”

“A blue jay, Andi.”

“What’s that?”

“A blue jay, Andi.”

Not a typo.  Just one day’s requirement of patience from my family.

“Was that a bullfrog?” I asked walking towards Lake Erie from the Sheldon Marsh parking lot the other day. You’ve passed it on the way to Cedar Point, btw. But, most people are drooling over elephant ears and waiting in line for two hours for the latest and greatest roller coaster. Me? Turning off at Sheldon Marsh to wander a long the beach with dead fish and dune plants, but that’s my next blog entry….

So, I say, “Was that a bullfrog?” 

“No, Andi, that’s a jet ski.”

When in doubt, always assume the best of the situation, right?  Bullfrogs trump jet skis in my book any day! The point is, I heard something and I could not see anything!  The list continues to grow. This is good and why my insurance company invested a bazillion dollars in me and my surgeon’s new Ferrari.

“What’s that?” 

A siren (those are the worst and hardest to discern.)

A bird (but it doesn’t sound like a bird.)

The living room clock (really weird chimes.)

The kids across the street (strange squeaks, but it’s something.)

A clock (in the art studio… what IS that incessant ticking sound? A radiator? A table creaking? Something at the window? I looked at the second hand on the clock. Ticking. Oh.)

Leaves rustling in the wind (oh, happy me!!!!) 

The electric tea kettle signal (just barely, but if I pay attention…)

The trash truck down the street (you take the bad with the good.) 

My shoe squeaking when I walk (Julie is the most patient BFF in the universe as she has endured hundreds of miles walking with me while my shoes squeaked, me having never heard it!)

The grass growing after the summer rain (ha! Just kidding… my audi hasn’t turned on my Earth Goddess Setting yet—that’s next week. I am totally going to ask for the Celtic Fairy Setting too)

I’m asking “What” a lot less and Julie suspects that my emotional life may rise from the Ashes of Cluelessness as I am willing to reengage with humans after withdrawing for many, many years.  I don’t want to give up my solitude entirely, but knowing I can be friendly again will be good.  My years of being sort of ‘snooty’ may be coming to an end, but that’s fodder for another blog entry.

Until then, be nice when I ask “What’s that?!” Please don’t tell me it’s a rare peregrine falcon lost in the neighborhood looking for its mother when it’s only a chipping sparrow. OK?

A Writer and An Artist?

Dear Blogger,

Our relationship is moving much too quickly. When I took that recent two year break, though it wasn't because our relationship had gotten too intense, I didn't think I'd be thinking about you this much so quickly. Here's my concern. In the wee hours last night I woke up to pee. (It was the Silent Pee, not the Bionic Pee that I told you about after my CI activation.) I usually fall right back to sleep but last night I laid there thinking about you. I had topics to write about and words flooding my mind. I hate to admit this, but I even began drafting sentences. Where is this coming from? You seem to have special powers over me that are trumping even my bionic ones! Do I need to wear my cochlear implant all night to ward off your enticements? Do we need another break to avoid a dangerous liaison? I don't expect you to answer, of course. You are likely quite happy to suck me in and take my words and add them to your silent empire. I just become one of your minions.  

Truth be told, at some level I enjoy it. People have been visiting us and affirming our relationship. Even my dad, whose opinion will always matter a great deal to me, thinks what I write is worth reading, publishing and gosh, he's even laughing aloud. It seems even middle aged minions enjoy affirmation.

I just don't want to miss sleep because of you. I will put a little notebook on my nightstand and when you invade my thoughts and entice me to lay awake, I will fend you off with words and notes. You will simply have to wait and interact with me on MY terms and MY timing. If we are going to spend time together, I need to be the one leading this relationship, not you. I'm sure you will understand. You've most likely been through this with others.

That new Art Camp for Women badge I put on the side over there? >

I will talk more about that later. For now, I'm going to church and I am not going to be thinking about you.

Sincerely,

(in case you need to be reminded of my new super powers)

Bionic Andi

Bionic Travels: Mapping #2

For CI users, one week after CI activation and learning to live with strange devices attached to one’s head and listening to noises migrating from The Matrix to one’s immediate world, it’s time for Mapping #2. This is when the audi connects the CI up to the computer and proceeds to cheerfully inflict further auditory torture.  (ok, it wasn’t THAT bad…)

Before I tell you about today’s travels on the Auditory Thruway, two important things: 

Costco is 45 minutes away from where I live, but only 10 minutes away from the doctor’s office. At Costco we belatedly learned that we can save hundreds of $$ on some needed meds, so we joined. After Mapping #2, I went to Costco. With my CI on.  No small miracle. And, I discovered this awesome 65% dark chocolate bark with nuts and pumpkin seeds… but I digress.

Secondly, my new dress matched the Haiku handbag I found at the thrift shop in Seattle and carried today. With this CI, I am now entering my ‘handbag phase of life.’ I slid through my ‘shoe phase’ a few years ago with only a few residual issues. Now that I have loads of sensory crap paraphernalia to carry, handbags are di rigueur pour moi!  I have been given permission to get all the handbags I want! Fortunately, my ‘want’ list consists of cool handmade bags that I find at craft fairs or make myself.  If it’s mentioned in the NYT or Oprah, I do not want it, thank you very much.

What happened at Mapping #2? 

I got an “A.” OK, I’m extrapolating from what she said, but in some fashion, completely beyond my comprehension, I am ‘about two weeks ahead of many other CI users’ right now. Seriously.  Beats me how or why. I am just saying what I hear and doing my best to deal with all the strangeness of living in the Auditory Matrix. My audi increased the sound loudness, added back in a frequency she deleted last week (so I now have 22 electronic frequencies playing in my head), expanded the distance of sound that will come in and gave me a program for ‘noise’ and the rest for ‘everyday.’ In two weeks I can add ‘music’ and hopefully ‘metaphysical ancestral communication.’  (She is really, really good!) I need to be less scared of my fancy remote CI controller and act cool while using it to switch between programs. 

My ear is still tender and apparently some of my stitches are being stubborn and not dissolving, so that’s making a couple of sore spots on my head. Moleskin to the rescue--adhered to the processor on my ear. The rechargeable batteries make it a bit heavy, but I will continue to adjust to all of this and heal from surgery.  After CI surgery, our tongues are affected because tongue nerves are in the same spot and are often damaged or cut.  My tongue is ‘off,’ but I’m not sure it’s ‘off’ quite enough to help me lose these stubborn ten pounds. I digressed with comments about dark chocolate bark and mentioned losing ten pounds in the same essay. No need to point that out, thanks.  

For those of you trying to figure out what I might possibly be hearing, today’s Helpful Analogy is to imagine the way sound comes when you yell through a fan! Don’t tell me you didn’t yell through a fan when you were a kid! If, per chance you have never done so, go buy a fan, plug it in and yell into it, posthaste!!  If you are cheap, just find a demo on at Lowe’s and start yelling!!! You’ll immediately have a sense of my new world.  All you have to do is separate the 230 nuances of sound your natural ear picks up and then distorts. Reduce that to 22 electronic pulses and voila! you will know what my Auditory Matrix sounds like today.  If that Helpful Analogy doesn’t work, there is the image of sound rushing through a window screen only to be swooshed away into the atmosphere by fierce winds swirling up to cavort in the treetops. The fan is better?  I thought so.

I haven’t heard enough voices today to know whether or not the soprano robots are now altos, or if the chipmunks are going through puberty with squeaky voices changing to baritone.  I did suggest some of the lower frequencies be increased on my ‘map.’ We’ll see what that does to my ability to discern words.

I’m not real good in the quantitative department when MATH and PERCENTAGES and NUMBERS are involved.  A lot of CI users would have filled this post with the % of words they recognized today over last week, or the % of hearing increase from the paltry 4-12% of word recognition I had before this CI.  Actually, my audi didn’t even give me any sentences or words today. I guess that’s sort of standard procedure, but I don’t have any numbers to share. I decided I got an “A” anyway. I go back in two weeks for Mapping #3. Between now and then, I will be cranking up the volume as much as I can handle and noticing all the environmental sounds that have long been lost to my perception. Thanks for traveling beside me on the Auditory Thruway.  Stay tuned…

Bionic Travels: Day Three

I went out walking for the first time with my CI on this evening. I had no hopes of hearing birds or the other marvelous creatures that inhabit Ohio in August. I just went out. What I discovered was a group of aliens building something in a workshop in my head! Imagine that… they have taken up residence without my express permission.  (I must have given it with all those forms I signed before surgery…)

I live in a quiet, fairly auto free neighborhood and therefore my world was still except for the workshop activity. It was very distracting, though I guess I wouldn’t mind so much if they were building me some shelving for my fabric. They weren’t. Aliens don’t deal in fabric…they like hard things with lots of metal and they throw sound around like it’s a toy. I think they especially like Slinkies and anything that emanates a high pitch twirl. Creeps.  

Fortunately I also inhabit an imperfect world, so I had plenty of problems to work out and finally, after 20 minutes or so, my mind was able to adjust the slightest bit and wander off to ponder other important things.  (Very sorry that I wasn’t able to solve your problems … leave them here and I will try IF I get around to it…) 

That being the better part of my evening walk, I will add the positive note that I heard the footfalls of the runner who came up behind me! THAT sound is the reason I took the cochlear implant plunge.  Reasons to date: the runner’s footfall, myself peeing, the computer keyboard, the car turn signal, running water in the kitchen sink.  The list will grow daily so I am told. Onward…

Cochlear Implant: Activation Day!!

(Written August 2, three days ago): 

I’m turned on. I admit it.

Most middle age women keep that thing sort of quiet, you know. But, keeping ‘quiet’ has been the problem, so getting turned on will change all THAT!! … Just a little lame cochlear implant humor. I’m sure I will be able to come up with plenty more once I am feeling humorous again.  Right now, the afternoon after my morning activation, humor is not at the top of my list.

It’s a Process they tell me.  I KNOW about processes… they require patience! and fortitude! and hope! and waiting! and humor! and prayer! They also require support from others and I’m more than a little grateful that I’ve been the recipient of love and care from all over. Only one of my friends can REALLY relate to the strangeness that the beginning of the Process threw at me this morning. But, ONE is better than none. It’s a total God – Story that my CI wearing friend Wendy is in my life. She was also the one who finally pushed me over edge to take this plunge. I’m not sure anyone else was truly qualified, though some tried.  Regardless, here I am. Bionic.

Some people have a misunderstanding that getting a CI will restore lost hearing and that magically, one will ‘hear again.’ That’s not exactly true. In fact, the only part that is true is that one will hear something again, but it’s nothing like normal hearing. Some day, as the Process continues, I may actually feel as though I have almost normal hearing.  After all, our nerves and brains are marvelous creatures, even for the middle aged.  And, our mind is happy to trick us sometimes too…  and sometimes it is OK to be tricked. Other times….well, that’s a different story.

Right now, there is no denying that ‘normal hearing’ is NOT part of the deal with a CI. My audiologist (I am learning that the term ‘audi’ is what CI wearers prefer to say, can I adjust to that too?!) took me through the standard routine… raise your hand when you hear a sound or feel something.  I did hear sounds. That’s good--it’s working. Then she went through the same sounds asking for the level at which I perceived them, from ‘barely’ to ‘too loud’.  They were all set at my determined level of ‘medium.’ Soon thereafter was the moment of activation.

Before I say more. I’ve been trying to discern my feelings about heading into that moment as I’ve watched the date grow closer. Fear? Not exactly. Anxiety? Some. Excitement? None. Apprehension?  That’s the best one. I was feeling wary of the coming unknown and having to 100% rely on the stories and best guesses of others.  Everyone’s hearing journey is different, so even with preparation, it’s ours alone. No CI tour guide to lead me on the exact path. I have a direction in which to head and then must find my way alone. Sort of. (Sartre, anyone? Or no one, as the case may be?)

I need a chocolate break. 

So, what did it sound like? The moment of activation, with my audi having set my tones to respond to my determination of ‘soft’ and ‘medium’ was, well… horrifying!  Bombarded by all sorts of unearthly electronic beeps and echoes and swirling noises, I took off my glasses prepared to burst into the tears I felt coming. (Is THIS what I signed up for? THIS is what a CI sounds like?  Get. Me. Out. Of. Here!!) My husband could see that response in me, but the audi wasn’t attuned to it.  I couldn’t even really tell her what I was hearing it was so awful.  (An aside, unlike many CI recipients, I have only gone one short month without hearing anything on that side. My old hearing aid wasn’t great, but I still had sound coming in.  I think that matters in my perception.) Soon, thankfully, I was able to suggest dialing down the high frequencies and tried my best to help describe the sounds entering my brain. No easy task.

I am still trying. I’m an artist, so the things that come to my mind are visual responses to the auditory stimuli. How strange is that?  Strange, I know. But I’m going to go there anyway.  It’s like electronic sounds swirling into mid air. It’s like sounds and frequencies jumping on a trampoline--jumping on a trampoline in a padded room where they sometimes hit the wall or ceiling and bounce back again. Hard. It’s like your neighbor slamming a door or ringing a dinner bell (yea, right!) at the end of a long tunnel. A tunnel that echoes like crazy. It’s like living inside a computer terminal and we all know what that’s like, don’t we?! Those are descriptors for random sounds. I have no idea if they are actually connected to sounds in the environment or not as I have no clue from where the sounds originate. Maybe it’s the sound of my blood flowing!! However, some of those sounds (at appropriate moments) are when I am peeing. I already told you I am turned on. This should not come as a surprise.  I haven’t heard myself pee in years. If I can hear that on day one, level one, I’m a little worried.

Speech? That’s another story. It’s the most important one to me, actually, and the most elusive—a big part of the Process. Miraculously I heard speech today, right away. Not all CI users report that in the first hour. “Speech” is a relative term here. I was prepared for munchkins, Charlie Brown’s grown ups (wah wah wah wah wah), Mickey Mouse or Donald Duck.  What I got was a cross between soprano robots and chipmunks.  My journey, my way, remember… (Maybe I will draw those chipmunks, in fact… as it was suggested I draw the sounds I hear.)  My audi had this cute little page where one points to the words one hears to discern one’s listening comprehension. She hid her mouth (no lip-reading allowed as we hard of hearing folks are GOOD at lip-reading!!) and said some words and I was to point to them on her cute little page if I could tell what she said. I heard words and I pointed to the correct images! But, describing the moment, I was too near tears to declare with glee “dang, I’m good!”  She was visibly surprised at my ability to recognize any words. That bodes well.

The rest of the immediate journey goes like this:

1) Figure out how to attach the processor and ear thingy (likely it has a more official name.) Today it seems more like a poisonous bug, or a young raptor ready to bite me at any moment… I do not want to touch it, remove it, or explore it. It’s plastic, truth be told--$8,000 worth of plastic and computer parts.  But, I need to go slowly. The thing is magnetized to my head, which on the initial attaching hurt more than a little, so my audi downgraded the magnet strength. Gosh, they’ve thought of everything! I’m a two. That made it more comfortable, though that part of my ear and head are still sore from surgery, so I’m bound to not want to mess with the thing much.

2) Upgrade the program on my CI every two days until I see her again next week for more ‘mapping,’ as the programming of a CI is called. With every program upgrade come new echoes, more tunnel sounds, snake-like hissing with every ‘s’ sound and no doubt, more trampoline antics.  I can’t wait. (That would be sarcastic…)

3) Be willing to actually show up for Mapping #2. I may have to ask my chauffeur, who was warmly willing to let me lean on him with my weak knees after today’s session, to make sure I go at the appointed time. Today’s not so fun experience and what these ‘program upgrades’ are supposed to offer me doesn’t make me real eager for next week’s visit.  It’s a Process. It’s a Process.  It’s a Process.

Finally, at the end of the strange electronic tunnel, I have been able to hear not only myself peeing, but the car turn signal, my computer keyboard and running water in the kitchen sink. Stay tuned…