Bionic Travels: Mapping #3

The noisy world is getting noisier.  Those around me are growing happier.  I am feeling freer.  The cochlear implant bill was $97,422.14.  A small price to pay for a freer, happier, nosier world??   Time will tell once the insurance company decides that they actually DID give pre approval for this procedure which they apparently  have ‘forgotten’ at this point.  Don’t get me started on health care….

That aside. This device is starting to work the miracles I was promised. It’s been fast for me because I had hearing up until surgery. Not much, but enough that I knew what voices sounded like even though I could no longer discern words very well.  Three weeks past activation, I’m understanding more than I have in YEARS!  It’s truly remarkable.  I focus mostly on voices because I could have lived without the newly noticed squeaky windshield wipers and the sounds of emptying water from the clothes washer which sounds as if it is flooding the house… Those would NOT have been worth $97,422.14. Relationships are.

Dave offered a profound insight the other day. For a long time he has been consciously and subconsciously making a choice every time he wanted to say something to me:  “Should I bother with this comment or thought? Is it worth repeating until she gets it?”  As an extrovert, he determined that is a good question to ask oneself all the time, regardless; but when it becomes necessary to calculate every word with one’s wife, that’s just a drag.  His impatience was leaking out though he really tried to seal the gaps. I did the best I could, but it was still hard. 

Many moons ago (four years ago when I first became a CI candidate) my audi said many a relationship has been rescued from the brink of despair by the hearing impaired person getting a CI.  I hear that.  (Pun intended and edited IN.) We were not near any brink, but it was a drag--on Dave, on the kids, on my friends, on my extended family, on anyone who had the audacity to try to telephone me, on the clerk at the ice cream store… Hard.  BUT NOT NOW.  At some point every day, someone close to me says the following (insert gleeful expressions) “You can hear me!!!” “I’m talking in a normal voice.”  “You heard that and I wasn’t looking at you!”

The clerks, mumbling into their cash registers, still get a blank stare from me, but I am actually feeling more confident to go out shopping without an interpreter. I’m a confident and active person so this was weird, but true.  I was tired of telling people with my clear, well articulated speech “I am functionally deaf, could you please speak more slowly. No, you don’t need to speak more loudly, but I have to figure out what you are saying blah, blah, blah…” I am feeling more free… like I could walk into a store all by fifty-something self and make a purchase without confusion!

And then there are restaurants.  I’ve avoided them since surgery July 8, but delivering our son to college last week I needed to eat and therefore had to venture into those noisy, scary places.  Chipotle?!  They obviously have no clue that hearing impaired people exist!!!  Or, if they do, they haven’t any interest in our cash! Line an entire restaurant in METAL?!  HA!!!  Our lunchtime foray into this bastion of college student feeding does not count on the “I could actually hear the waitress say something!” scale of small miracles.  But, the first night, I actually DID hear the waitress say something!  The next morning the timid waiter wasn’t really awake because I had to ask my Oh So Patient College Sophomore Son to interpret for me.  But, one out of three isn’t bad!

If you’re what I affectionately call a ‘quantoid’, you will be more fascinated with the following stats. These are oft rattled off by the CI wearing set, though I’m still behind the curve. When we get our hearing tested we get scored as far as how many words we can recognize, how loud frequencies are, if we can repeat a sentence and have it make sense… stuff like that.  My Ph.D. clad audiologist has been outstanding during this initial mapping phase. While I prefer warm and fuzzy health care providers and she’s not high on the W/F (Warm/Fuzzy) scale, I can tell SHE’S GOOD. She is listening really well to me and paying attention to a gazillion details. I am truly amazed at how she can tweak this CI to fit my needs in all sorts of cosmic dimensions. This time she put me back in THE BOOTH.  (The booth makes us cry and toss up our heads and hands in frustration as it confirms what we know to be terribly true already: we cannot hear.) Anyway, it’s standard procedure to put us in the booth to become qualified as a CI candidate to quantitatively confirm just how bad our hearing really is. I understood ZERO words with no hearing aids and about 4-14% with them. That’s not real conducive to easy living in the hearing world with only a first graders’ vocabulary of sign language. With the CI, three weeks after activation, I scored 64% of word recognition for words spoken in quiet with no context.  Add context with sentences and I got 100%. Stunning. I’ve been told that with practice (not really into that yet), I can reach around 90%.

I think maybe possibly I’m a believer.  Bring on the words.  

Bionic Travels: The Secret Language of Audiologists

I have gathered several audiologists over the past few years and I have seen glimpses of their secret language. I also believe they have a Worldwide Secret Society of Audiologists.

They send out just enough clues to those of us who are outside their Society to keep us guessing. (I wonder what it sounds like at their national conventions?!) I get follow up letters after I meet with my audiologists. I thought others like me might want a small hint of how they like to communicate:

“Threshold responses to warbled tone stimuli ranged from 15 dB-90dB for the frequencies 250 Hz-4000Hz for the right ear, and 5 dB-45 dB for the left ear.”

“Tympanometry is consistent with normal middle ear function bilaterally.”

Apparently I “present as a fifty something year old female with moderate to profound progressive bilateral sensorineural hearing loss of unknown etiology.” 

“Using routine audiometric technique, a psychophysical map was created with good reliability.” (I always knew I was a physical psycho, but now there is proof in my records!)

Finally, “Appropriate behavior was observed when the Maps were tested.” Whew!! Good thing.

For my college aged blog readers: I would strongly recommend you consider becoming members of the Worldwide Secret Society of Audiologists! With all the Boomers getting older and needing hearing assistance, plus all the Millennials who listen to their iMusic devices too loudly, job security is all but guaranteed. And, you’d get to speak a really cool secret language. Better than Primitive Quendian, Westron, Khuzdul or Morgoth. Pays more too. Just sayin’…  

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…

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…