Shouting Won’t Help – Late Deafened Adults (LDAs)

Ms. Bouton and I have one very distinct difference.  She could hear at normal levels out of both ears for the first 30 years of her life and as such she is a Late Deafened Adult (LDA).  I have no recollection of being able to hear at normal levels out of both ears – or one ear, for that matter.

I can remember hearing better than I do now, but I have no recollection of binaural hearing. I can’t quite wrap my mind around how that even works. And I’m not sure how to quantify the difference between what I heard as a kid or young adult and what I hear now; only that I once had perfect pitch and no longer had it by my late 20’s.

I don’t have hearing above, below, to the left, in front of or behind as Ms. Bouton describes. It all comes from the right.  Consequently, if I hear a noise I equate with emergency from a scream to a siren, I automatically look first to the right.  Then I check behind and finally to the left.  Up and down is generally not an issue.  Very few fire trucks arrive overhead or underground, thank God!  Bombs away!  Incoming emergency vehicle!

Once I was fitted with bicros hearing aids. That involved a hearing aid in my right ear that was connected by a wire than ran through my hair to a receiver and transmitter in my left ear. I was told I could use the phone with my left ear.  That would be a “NO.” I was also told I would understand the directionality of sound automatically.  Um, that would be a “NO” as well.  Nowadays cros and bicros aids no longer require wires. Yet, I’ve never bothered again – my brain just isn’t wired to tell the tiny time lag from the sound coming from the left.  It’s been too long, apparently. And with the cost of hearing aids, I cannot imagine trying to pay for bicros aids these days!

I do have a microphone that I can clip to a shoulder or my shirtsleeve (with a wire, of course ) that I can use to listen in on things from my left.  Only it never really seems to work as it is supposed to. I can run it down my arm and hold it in my hand at a party – which also never works because there’s so much NOISE  at a party.  Who thought that up? A hearie, I’m sure.  Of course, they don’t work well for me because I have to have both sound and the physical elements of speech.  Unlike many LDA’s, I don’t remember ever being able to talk with someone without staring at them with rapt attention.

It should be noted that many guys think I’m really “into” them when I’m lip reading.  I’ve had guys try to tell me that they’re just not “into” me and then look nonplussed when they find out I’m half deaf rather than expressing exceptional interest in them.  What? You mean you’re not lusting for me?  Oh, no!  Perish forfend!  

Lip reading (now known as speech reading) alone is useless to me.  In fact, other noise interferes with my ability to lip read. Speech can be useful without lip reading in certain circumstances (those CD books with professional speakers) but generally I need both speech and lip reading to understand what is being said.

I also have an FM system by Phonak that works with my Phonak Naida hearing aid.  I’ve got gizmos and gadgets and in the end, I’d rather be really good at American Sign Language (“ASL”) and talk to people with my hands and listen with my eyes.  But, since this isn’t a perfect world, I’d rather sit across from someone in a quiet room and both watch and listen as they speak.

I guess a lot of LDAs really are into denial.  I’ve always known I don’t hear well.  I’ve always had accommodations of one kind or another in school.  I grew up being called “half-deaf” until I had a rehab counselor tell me I couldn’t use the term deaf.  I find I’m really sort of annoyed with the deaf, Deaf, hearing impaired, hard of hearing rigmarole.  I’m a bit tired of being defined by activists in any community.  I’m me – get over it.  Someday I’ll be totally deaf and I’ll still be me, just a different version of me – more dependent on text messaging.

I grew up telling others, “I can’t hear you.”  My thought process went something like this:  You want something from me?  Then talk in a way I can understand you.  That included teachers who were being paid to teach me.  I ended up getting in teacher’s faces by the time I got to college.  I figured my tuition paid their salary; they could make sure I got what I needed.  It never occurred to me to hide my hearing loss.  I guess I was lucky in that regard.

This isn’t to say that I don’t suffer from isolation as a result of my hearing loss. I’ve never quite figured out if I’m a loner because I’m a loner or because I have hearing loss. Am I an introvert because I have hearing loss or because I’m hardwired to be introverted?  Do I avoid noisy situations such as parties because of my hearing problems?  Yes!  Unless there is ASL being spoken I would rather be anywhere else than a noisy party. What is it with extroverted hearies, anyway?

However, the lack of denial doesn’t make me any more able to cope with the world as it is – which is a world designed for people with all body parts in full functioning order.  Just like individuals who are in wheelchairs, use walkers, are blind or have other problems, the deaf and hard of hearing are always behind the curve when it comes to keeping pace with the fully able bodied. I was mainstreamed in school (what a nightmare),  grew up in a hearing world as a half-deaf person, and  primarily know hearing people. My family does not use ASL.  I am not a part of either world – the Deaf or the Hearing.  I’m in that Never-Never-Land of the folks who hear too well to be Deaf and don’t hear well enough to be Hearing.  One difference is that I’m willing to learn ASL and let go of the hearing world if only I had enough exposure to the Deaf Community so that I could fully integrate.

I’ve never experienced a sense of profound loss over my hearing.  I did lose a career (social work) over my progressive hearing loss and that was Kubler-Ross stages of loss grief that went on for a few years. In the end, though, I’ve found you can take the social worker out of the field of practice, but you can’t take the social worker orientation out of the person. I’m still as focused on community action and improvement of the lives of others as I’ve ever been – I just express it differently nowadays.

Unlike the “Deaf Community” I do acknowledge that hearing loss is a hidden disability.  In fact, it can be a profound disability in certain segments of the deaf community where members lack overall language skills.  As a member of many deaf oriented FB lists I see on a daily basis that those with ASL as a primary language are frequently incapable of writing English in a coherent manner.  I live in an English speaking society, so someone who writes in ASL sounds uneducated or even mentally impaired in some cases. It makes it far more difficult for the deaf to achieve employment parity with the hearing.


Out with the old, in with the new

Apparently it was time for an update.  I was bored silly with the grey on grey of the prior theme.  Granted, it did focus on the text, but… this one has a bit more verve to it.  And I admit that I am color starved this dreary spring. So, voila! We now have red and blue as well as a bit of beige to make the words “pop.”

Speaking of “in with the new,” I’ve been using my iCom more now that I replaced the charger cord.  For those of you who are not sure what an iCom is, it is made by Phonak (maybe other brands have similar items – I dunno) and it can be used for a variety of things.  I can listen to iTunes using the iCom and my bluetooth hearing aid.  Only the sound isn’t all that loud for places like the gym.  And, I admit, that sometimes I do something – bump something – and suddenly I’ll hear The Eagles wailing “Desperado….why don’t you come to your senses…” and start looking around to see where the sound is coming from.  So, mostly, I avoid the musical functions I can access with it.

The iCom really makes life better for me when I am on the telephone.  Since my only phone is my iPhone that means I am one of those annoying people who do talk on their cell phone in public.  And I’m Hard of Hearing and trying to talk loud enough for the iCom to pick up my voice.  You get the picture… And to make it worse, there is no headset hanging off my ear with a flashing light.  I sometimes see folks with what looks like a large metal beetle on their head and they’re talking to themselves – but the metal beetle has a flashing light so I know they are on the phone.  Not so with me since my hearing aid does not come with a flashing light to indicate a connection.  And, honestly, I think I’d rather not have an LED flashing in my ear.  No, I just look like a well-groomed street person talking to herself.  Except I have the iCom hanging around my neck.  Not exactly a fashion accessory and I’m sometimes asked what the heck it is – a fair question.  At least I’ve never been confused for a mad bomber as I once was while wearing a different type of FM loop system.  Things are less stressful at the Federal Court these days since apparently bombs and iCom are not closely associated.

The only problem with the iCom is that it eats up battery life in my hearing aid like batteries are free and it runs out of steam fairly rapidly.  I’m not sure how to keep it charged during the day and I don’t have the money to get multiple ones.  I suppose that’s a problem for another day.

Like getting the last car off the assembly line on a Friday…

We all know the “truisms” about not buying the first car in production on Hang-Over Monday or the last car off the line Friday since everyone wants to leave work.  It is this “tongue in cheek” approach I take to the following…

This is the story of how I got my last hearing aid and the early warning signs I should have paid attention to. (Danger, Will Robinson, Danger!)

Mass Rehab could not find my vendor as a contracted vendor. When they found each other in the world of co-pays, subrogation and funding, they could not seem to figure out who was paying for what and when it would happen. This took … oh, several months.  Both of them swearing they could not figure out what was going on with the other. Both parties genuinely good folks.

But since I’d not used MRC as a backup before, I really didn’t pay that much attention. However, I should have known, I truly should have, when for the very first time ever, there was a serious billing snafu about my hearing aid. Now, normally, I get a large stick with bent, twisted, blood-flecked rusty nails in it and club my very excellent (and normally incredibly flexible and customer-service friendly) insurance company into line with it – although I do apply reason first and merely walk softly whilst carrying a large and scary stick.

Only this time – it was an utter mess. Before it was just the insurance company. This time Mass Rehab Commission was in the mix – and once I satisfied myself that they were spot on then another spectre reared it’s ugly head – some sort of 3rd party insurance my vendor allegedly belonged to (the vendor denies). In the end I had to put away the club without bloodying anyone (quite frustrating, considering the level of the row going on) and my vendor ended up having to fight the good fight without my being able to do a thing for them. While I didn’t have to pay the rather large chunk of change, my vendor probably took it in the shorts, which I don’t like as I rely on them over the long-term.

Of course, this entire dust-up took months. About the time things calmed down my new hearing aid’s ear piece came apart in bits. It looked as if Wolverine of the X-Men  had been clawing his way out of my ear canal and through the piece. Now, mind you, this was a soft and flexible item – I’d never experienced anything like it before.  Apparently there was all sorts of wiring inside and a microphone/speaker assembly as well so when it came apart (in my ear) I was wondering if I could get it all out or if I’d have to have the tech remove all the bits and bobs of it.  These were wires the size of hairs going all over the place.(attribution to ass666 for the image)

I was thrilled when my new hearing piece was of hard molded plastic!  It fits just the same and I don’t have to worry about it going to bits!  And my vendor said I didn’t have to pay the normal $120 fee since it should not have turned into a kit. But I digress with the good news…

A week or so ago the wee little dog reached into my purse, grabbed the hard-sided case and held it for ransom for a treat. It had a couple of tooth marks on it, but that was all.  He’s NEVER done that before – no interest in hearing aid at all.  In fact, I’ve dropped it on the floor, been looking all over for it, and he has ignored the aid itself.

Then a few days ago I opened my hard-sided hearing aid case and it split in half.  I blinked a few times and reseated the cover.  Uh-huh…

I ended up in denial.  Certainly, it must work.  No – it’s dead, Jim.  Such an
inconsequential thing, really, but considering the history of this entire transaction (it’s been over a year since my audiogram and the initial decision to upgrade) I am now wondering if there’s a “curse” on this thing.  It’s the agencies can’t work together, insurance is messed up, vendor unhappy with financial loss, hearing aid breaks and even the hard-sided holder fails curse which is testing my ability to find a certain humor in this rather perverse set of circumstances which keep returning like my psychotic desk pumpkin.  If I believed in such things I’d be doomed.

I do find it fascinating that I’ve never had a spot of trouble with funding before, or huge insurance mix-ups, or rogue 3rd party insurance companies getting in the mix with phantom discounts, or having my hearing bits look as if they’d been attacked by something with big claws.  And I’ve never had a case just fall apart as if it had been run over by a car.

I love my Phonak NaidaS, I love my vendor, Joel, I even can say I love working with my MRC counselor. I appreciate that when I called my vendor’s office, laughing, about the “Curse of the Phonak” I was offered a couple of hard cases as soon as I could get by.

I’m now wondering what the next twist or turn I’m going to encounter. Will it start playing random Christmas tunes in my ear come December? Scarrier than Halloween, fer sure.

New aid/old aid

My first hearing aid was analog. I told the audiologist who fitted me that it was like hollering down a rain barrel. She was a crusty old soul and basically told me to suck it up and be happy.  I remember it was so badly fitted that the top of my ear bled. Thank heavens, she retired, and the person who took over was a dream. My hearing aid was fitted correctly and over time I finally got one of the first digital aids.  Wow.

I’ve done behind the ear (BTE), in the ear (ITE) , and bi-cross with a wire running through my hair (not fun and not repeated). I lost the bi-cross set in a snowbank between Fairbanks and Anchorage (I kid you not). I thought I was doing pretty well with my old Phonak until I got my new Phonak Naida.  Then the earbud broke and I went back to the old Phonak for a short time and I realized while it might fit a little better over the ear, I never realized how bad the sound was in comparison.

But when I got the old one it was way better than the Siemans I had before and that was way better than the Starkey model – and so on and so forth.

It used to be that a hearing aid was just a microphone and a speaker. Now there is what amounts to a tiny computer either in or behind the ear. It can shut down extremely loud, abrupt noises for folks like me who have a pain reflex to such (although there are times it can’t control it all). It conditions sound, for lack of a better term. Sound coming in at frequencies I can’t hear is somehow transformed into frequencies I CAN hear – sometimes for better or worse – put my grandson behind me in a car and it sounds like Darth Vader is shouting at me.  Oy vey!

Someone on a Deaf and HoH attorney’s list shared a NY Times blog by a person who still wore an analog hearing aid and was happy to have the wax encrusted, cracked aid (must be an ITE) fixed.  I can only assume she uses it only for environmental noises, because my first aids were awful in terms of all the extraneous noises.  The blog (above) talks about the hunt for an affordable hearing aid. It takes folks on a long journey to various retailers including big box stores. And while I’m all for folks shopping (assuming they have the time and the money to drive all over) the fact is that a competent hearing aid center like Audio Hearing Center, the one I go to – sure, I’ll plug them here since the Times article plugs big box vendors – has a very wide variety of hearing aids. They carry all the major brands.  I go Phonak because I have Phonak FM and iCom and I don’t want to change to a new brand. There are hearing aids without bells and whistles and one’s that can adapt like crazy – which for me is a godsend.  I think the important thing is to get a GOOD audiologist and a GREAT tech.  Mine is also an electrical engineer.  I have a relationship with my hearing aid vendor and staff, just like a good doctor. You go to a big box store and meet different people all the time. I will stay with Dawn and Joel, thank you.

But back to the point – which is old and new technology.  Last night I went to a Buddhist meditation and mind training seminar and had the old aid by mistake. It interpreted some sounds as whistles and others as – I’m not sure what. After a few hours of desperate lip reading I was exhausted. I’d have had to work maybe half as hard if I’d had the right hearing aid.

Silly Saturday

Having made my way through Freaky Friday with only a few bumps and bruises I decided to master what was clearly going to be a Silly Saturday.

Woke up in the wee hours and realized there was a huge electrical storm (my windows were lighting up). Went to the top of the stairs and saw the dog quivering at the bottom. Took him upstairs where he proceeded to hide in the closet. I got him and covered him with a couple layers of blankets on the bed to keep him from tearing up stuff in the closet. This morning I woke up to my vibrating alarm with dog pressed against the small of my back.

Got to the train station and picked up a fellow lawyer, dashed to the office, met with a client, built a website for the lawyer (yes, I do that too) and all the time kept reminding. “I can’t hear you on that side.” Despite it all the site was launched, linner/dunch was eaten and I drove her back to Greater Boston.

I took an iphone photo of my old hearing aid and was going to send it to for her hearing aid feature and I realized (1) this thing is HUGE compared to the Naida, (2) it actually fits better that the Naida (I feel a fitting session coming on) and (3) I can wear bling on this, but not the Naida because there is no hardware in the earbud. In either case the earbud is invisible to the naked camera eye. The reason it is so large is that it has an fm plug on the end of it – on the Naida it resides on the iCom which enables me to use it bluetooth. I’m sure there is more to it than that, but I’m not a tech.

I finally remembered how to operate this hearing aid (which can be adjusted without using a remote control) and am actually pretty happy with it at this point. 🙂 The adaption back to not really hearing all of the sounds in the “hearing banana” took place quicker than I imagined it would – once I figured out how to turn it down. LOL

Hearing Aids – not for the faint of heart

Oh fer goodness sake! Who knew that the earbud of my Naida was going to be so fragile?  I had no idea that the comfy little ear bud was going to fall apart – in my ear, no less.  I was taking it out using the little pull string when the string came out, along with a tiny speaker and the rest of the “guts” I did not realize were in there. My other ear pieces are just some sort of molded plastic with a tube.  I was sitting there in the car, wondering how to get the rest of it out without the little string thing. Suffice it to say, I did get it out and the thing looked like it had run afoul of Wolverine from the X-Men. What was THAT about?  I called the dealer and it will cost $120 for a replacement for an essentially NEW product. I’m mind boggled.  Aren’t they supposed to last longer than a few months?  It is not even a year old!

So today I looked for my last hearing aid – found it, put the battery from the damaged one in it – nothing.  Not good. So I found the hearing aid I’d lost for a year (under a car mat, no less) and put the battery in that one.  It booted, then died. I considered the patriarch of the clan, but went with the one that booted. Got a new battery and put it in.  I realized that it actually fit better behind the ear than the Naida so I’m going to have to get the Naida refitted. It has not been particularly comfy for me in the BTE part.

Because one good FAIL deserves another I killed my iMac by downloading the new OS (sigh) and spent two hours on the phone with support trying to figure out whether it was better or worse with the old hearing aid on (no iCom for that one), getting disconnected once and then still having to truck up to Salem, NH to the Apple store to have a Genius  fix it in 10 minutes.  I tried wearing the old aid in the store, but he caught all the background noise and I turned it off and tucked it in my purse so I could hear the Genius.

I tried wearing my old one to a meeting tonight where there was a lot of background noise (and terps) and ended up taking it out yet again. Thankfully, the folks with the little kid who was bored out of his mind went home at the break, but I decided to just do terps tonight. I’m tired of sound headaches and the older hearing aids tend to give me more of those. Sometimes I wonder about those old ear horns… ear horn

Mentioned this to some HoH friends who freaked wondering where their back-up aids were in the event their primary aid went down.  A good reminder that strange things can happen when you’re dependent on an appliance that is small and sort of dainty to hear things.

Let this be a lesson to those of us with back up aids.  Know where they are in the event you’ve got a sudden system failure.

Photo of earhorn by Photo by Chainsawbait

The joys of sounds

“The hills are alive….” well, no, not the hills.  The room.  And it isn’t exactly the sound of music, it’s the sound of my cell phone.  During a meeting.  An interpreted meeting.

Now, mind you, when I use my cell phone in general I use my bluetooth enabled Phonak hearing aid with a Phonak iCom and I know my cell phone is ringing when I hear a ring-tone in my ear.  However, the ring tone I use on the cell phone is loud and funny.  It suits my sense of humor as it blasts out, “Oh, where is my cell phone?” over and over.  This is great if I am in a quiet space or I can feel the phone vibrate or see it flash.  But… if the phone is in my purse, on the floor, by my feet, and if I’m  not wearing my iCom or it is not on (why wear an iCom in a meeting?) then I’ve got no clue the cell phone is screaming “Oh where is my cell phone?  Where is my cell phone? Where, oh, where oh where oh where…is my cell phone?

Which brings us to last night.  I’m intently focused on the terp when suddenly one terp who is “off” starts signing at me about a phone.  Phone?  What phone?  I look around the room.  I look back to the terp. She points to my purse and I look down to see a glimpse of my iPhone flashing away and I’m acutely aware it’s telling me to find my cell phone.  Oops!  I duck under the table, scoop it out of the purse, turn it to vibrate and submit to good-natured ribbing about the ring tone and the deaf lady with the phone.

Which brings us to the fact that some of us hard of hearing, almost but not quite deafies can use a cell phone under certain circumstances.  Like when I’m in a quiet area and I’ve got my bluetooth function feeding sound into my ear.  Mostly, though, I use it for text messages and email, but sometimes I do use the phone feature.  And I guess I’ll keep the funny ringtone since everyone (but me) got a good laugh out of it last night

Everything makes noise

This is not a news flash to most folks.  The thing is, I simply do not remember what it was like to be a fully hearing person.  I lost the hearing on my left side when I was 18 months old and the hearing on the right has been edging down ever since due to nerve degeneration. My hearing is at the lowest it has ever been since I got clipped on the noggin and all this got started, yet thanks to my new Phonak BTE my world is alive with sound.  This is both good and bad.

When the little dog in my life – the one with who does the enormous full-throated Cujo imitation – let’s loose when I’ve got my aid in I find myself in full startle response.  Just how high can I levitate off a chair? And where did that sound volume come from? He can’t have vocal cords long enough to do that, can he?

That strange noise at the top of the stairway was my roomie’s cat hissing at the dog. I never really understood how weird a hiss sounded like before. It is like something you’d expect from some alien thing invading our world. Well, on the other hand, maybe they did. We did used to worship them as gods at one point.

I was going crazy trying to find out what the noise was in the bathroom until I finally realized it was the wall clock ticking off seconds. And that unclassifiable sound? Why that’s the hot air being forced up the vents from the furnace.

And my roomie wonders why, when I am at home, I sometimes take out my hearing aid and, like Braveheart, scream “Freedom!”

Just how many hours are there….

Days blur by.  The morning “shake my bed until I get up” alarm starts it off and shortly thereafter a steady flow of caffine, people, computers, meetings, and program reading fill all the nooks and crannies of my life. Add to that a healthy dose of family involvement and the old gal starts slacking off on her blog.  When sleep and doing laundry become your favorite “hobbies” there is a message in there to SLOW DOWN! 

AA has it right. HALT!   Never get too Hungry, Angry, Lonely, or Tired.  Since getting to ASL class is proving to be extremely hard (I may have to take it again in the fall) I started attending a local open AA meeting with interpreters. Good thing AAers are inclusive. And to me a meeting is a meeting and the steps are the steps.

Achievements of note during my hiatus include teaching my youngest granddaughter to cast on knitting, how to establish the first two rows and the joys of ripping and restarting in order to achieve the desired look. My grandson has proven to be a spectacular pizza orderer and came up with pepperoni, bacon, and pineapple, with red sauce, which I can recommend to anyone who can imbibe in pork products.  There is nothing to report on the eldest since she and her turtle shell backpack are in Alaska learning the ins and outs of snow boarding with her Alaska Dad. Hopefully she will come back without a cast on some appendage.  I must text her to pick me up a Fur Rondy pin or T-shirt.

I found out that not just dogs get parvo. Who knew?  There is a human (non-lethal) parvovirus called Fifth Disease and when adults get it, it can be quite the problem.  I thought my daughter had shingles, and perhaps she’d have been better off if she had.  Instead, she developed  the parvovirus mimic of severe rheumatoid arthritis and is now taking enormous horse pill akin to Celebrex on steroids.  The doctors say it will be a few weeks.  The web says it can be months.  I hope the doctors are right.  (Note to Higher Power – please turn this virus away from me, if possible!  I can’t take anti-inflammatory drugs.)

And so it goes.  The new hearing aid is wonderful!  I’ve been told by the ENT that with it I have near normal hearing in that one ear.  We disagree over bi-cross aids.  Been there. Done that.  Not interested in trying them again.  I love my iCom, just wish it would keep a charge longer. I don’t watch TV so the TV link is not on my horizon.

Spring seems to have arrived without the advent of a snowy winter.  We’ve had an “open winter” which means there will probably be drought conditions this summer.  Hopefully we will get enough rain to offset that, but one never knows.

Do cars make noise?

…and other strange questions the hard of hearing or deaf might ask.

There is endless fascination on my part how much noise there is in the hearing world. Until I got fitted for my first hearing aid I never got things like why people gave me dirty looks for reading the newspaper. Even then, there’s a lot of noise that’s lost on someone with significantly impaired hearing. Like escalators.

And now, after lovin’ my new hearing aid I realized the car was no longer quiet. Today I asked my roomie – how much noise do cars make? This was not an academic question. I figured it depended on the car because I remember commercials for quiet cars. Then she realized I mean MY car. Since I’ve never really heard anything more than sort of a quiet hum before, I was a little alarmed that maybe nuts and bolts were going to start falling off.

Tonight at ASL meet-up I talked to a deaf participant and we got in a conversation about how hearing people deal with all the noise.  So how DO you deal with it?  If I am hearing only a fraction of what the rest of you do, it must be like living inside a cement mixer filled with ball bearings. And you can’t turn it off.  Don’t you ever want to stick your fingers in your ears, scream, and run around in circles until you collapse from exhaustion?

I have friends who burp or make other body noises and feel compelled to point it out to me, saying, “Excuse me,” and I often say, “The nice thing about having a hard of hearing friend is never having to say ‘excuse me’ unless it smells bad, because otherwise I’ll never know.” I sometimes wonder just how loud body sounds are.  Is it like listening to someone banging on a radiator with a pipe or something?