Do I need a psychologist or an audiologist?

The biggest challenge for me is psychological in terms of adjusting to the implant and truly accepting my hearing loss.  I apologize if I sound repetitive when I say that part of me was hoping that I would no longer be hard of hearing once I had my implant.  No one ever told me this was a possible or achievable outcome.  I know it’s not.  But still that is my deepest, secret, not-based-in-reality wish.

I’m so tired of the effort and adjustments I need to make for each and every communication.  I have to think so much about hearing.  It’s hard for me to believe it will be easier and maybe it already is some degree easier but it’s subtle and I feel cheated.  Yes, yes, this is a spoiled bratty attitude and I know I need to be positive to do as well as I can hearing-wise.  It’s hard.

I read on support forums and blogs about the “miracles” and “wow moments”.  I’m struggling with feelings of guilt.  Why don’t I share these sentiments?  Part of it, I think, is that quite a few recipients were at a point where communication was impossible.  With an implant they rejoin the hearing world.  And this is truly a miracle.  For me, I was already part of the hearing world.  Admittedly, I was somewhat limping along and my struggles were slowly but surely getting worse.  The only choice I had for better hearing, or even stable hearing, was the cochlear implant.  Another factor may be that  some folks who are implant evangelists are speaking several years post activation. They’re at peak performance with the implant.  I’m still a beginner at 2 months out.

The biggest change I notice is the awareness of environmental sounds.  This is good.  The combination of the technology and the human brain is truly incredible.  How is it possible that this device does what it does?

My goal now is to lessen and eliminate difficulties understanding speech.  When I have difficulty hearing someone and others do not it depresses me.  What can I or should I be able to look forward to?  Am I hearing some percentage better in everyday communication situations?  How can I assess this?  Questions for an audiologist?

When I was tested a month ago my scores had tripled since activation.  The audiologist said I was doing better than average.  Do I feel three times better about my communication abilities?  It’s hard to measure in a simple way.  I’m not sure.

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I want to hear punchlines

I think this probably a common phenomenon with hard of hearing people.  At least it is with me.

Oftentimes in group settings, work meetings or social,  I’ll be mostly following what someone says and then they make a funny comment or perhaps deliver the punchline of a joke.  Others in the room will laugh and I miss it.  So then what do I do?  My choices are: laugh as if I heard it, remain unaffected, ask for the comment to be repeated, assume a semi-bemused quizzical expression.  I generally try to remain open and don’t laugh because I’m done faking it.  However, it really bugs me.  And I wonder how often I’m perceived as either not having a sense of humor or just being dense.

With jokes in particular the voice cadence tends to change when the punchline is delivered and often drops in volume and is easily missed by someone like me.

I’m hoping that over time with my implant and improving hearing ability that this changes.

Because, I really do have a sense of humor and love to laugh.

Did you hear the one about a man and duck who walk into a bar…

Coming Out of the Deaf Closet

As a hard of hearing person with a severe loss I’ve been “hidden”. Having grown up as hearing person and fully mainstreamed without any special hearing assistance my loss has been largely invisible to others. It’s as if I’m on a raft and the sea is very calm. Slowly, slowly but surely I drift farther from shore, where all the hearing people are. I’ve been gradually moving into a sort of hearing limbo, neither fully hearing nor fully deaf.

As I prepare for my cochlear implant I’ve connected with other implant users, hearing loss associations, support groups, etc. I’ve officially joined this group of people linked via hearing loss and deafness. I’ve “come out”. If you asked me I would say that I’ve been assertive about my needs as someone living with hearing loss and I’ve tried to be good about talking about it. However, up until now the only accommodations I’ve employed have been those I could do myself. Now I am reaching out to others and accepting help and support that have been there, waiting for me, all along.

I’m told the implant is not a fix but a tool. I can look at it as the oar that will help me get close enough to shore so that I can communicate and participate. I will stay on the raft but now I’ll be tethered to land.

What Does Severe Hearing Loss Sound Like?

Over the years I’ve often wished I could give other people a sense of what my hearing is like.  You can get some idea of blindness by wearing blindfold or try to navigate in a wheelchair to simulate mobility issues.  But with hearing it’s hard to convey.  You can’t easily “close your ears” to certain frequencies.

My hearing loss is called sensorineural hearing loss.  A common aspect is the loss in high frequencies, as is the case with me.  One big problem with the loss of high frequencies is that without them it’s tough to discern consonants.  For example, cat sounds like bat, which can sound like hat.  Try figuring out a sentence without consonants.

I came across sample audiograms and sound files that attempt to illustrate normal hearing as compared to a severe hearing loss.

normal hearing audiogram. x axis frequency. y axis decibels. dots across top straight horizontal line.

Normal Hearing Audiogram. Dots indicate perceived sound.

severe loss audiogram. x axis frequency. y axis decibels. dots display descending from left to right.

Severe Loss Audiogram. Dots indicate perceived sound. "Ski Slope" high frequency loss.

Links to .wav files (source: http://www.neurophys.wisc.edu/animations/)

If you listen to the severe loss sound file, as someone without hearing loss, you might think “My God.  How could you operate with that?!”  Bear in mind that my communication success relies heavily on visual information combined with sound and contextual clues.  And we humans are amazingly adaptable.  Somehow we can make it work.

Ring, Ring… It’s Tinnitus. Ugh.

Like many people with sensorineural hearing loss, I have tinnitus in both ears and I hate it.  I can’t imagine anyone saying otherwise.

On my right side it’s a high steady tone.   On the left it’s more of a low hum, sort of like the noise from an air conditioner.  Tinnitus can result from a number of things such as loud noise, illness or hearing loss.  From what I’ve read it’s sort of like phantom limb syndrome, where an amputee feels sensation or pain in the missing limb.  In the case of hearing it’s my brain simulating sound in response to missing hair cells in the cochlea.  They don’t know why or how to make it stop.  Many, many people would love a cure, myself included.

I’m lucky in that I have managed to get used to it.  I’ve had time.  It’s been about 20 years since it first started, on my right side.  I’m not sure when the left began exactly. During the day, with other sounds masking it somewhat, it’s not terrible.  When I lie down at night to go to sleep, sometimes I really wish it would stop.  But then I fall asleep.

The question is will the implant have an impact on the tinnitus?  Maybe yes, maybe no.  I’ve read some reports that the tinnitus is temporarily worse. Auugh!  Please no.  I’ve read other reports that when the implant is connected with the processor and on, there is a masking effect resulting from hearing more sounds.  Again, at night when you’re “unplugged” it may be the same as it is now.   Another case of we shall see….

Where Do I Fit In? Do I Have a Hearing Identity?

When I was growing up we never talked about my hearing loss.  Or the hearing loss of my brothers.  It almost seemed like I was supposed to pretend that it didn’t exist.  I can imagine my Mom saying something like, “You’re fine.  There’s nothing to worry about.”  Only once can I recall a reaction from my Mom when one of my siblings mentioned that a cousin had gone completely deaf (one of my Dad’s sisters sons).  Mom very quickly reacted and told us not to think about that.  At the time I didn’t think much of it.  Looking back I suppose it was a mother’s automatic instinct to protect her children from unpleasantness.  Or perhaps, her own fear that something similar could happen to one her own.

I think many of us with gradual hearing loss start to feel like outsiders as our loss progresses.  We don’t have a recognized group or community.  We’re trying our hardest to be “normal”.  But we’re not.  An enormous amount of energy goes into coping, figuring out and piecing together in order to communicate.  And I’ll admit that there I times I give up and pretend, smile, nod.  And hope my non-sequiters are chalked up to quirkiness or humor rather than stupidity.

“…Unlike the deaf, who have an identity and the pride that accompanies it, we (HOH) don’t.  We have shame.” Brenda Batatt, Executive Director, Hearing Loss Association of America.  This statement brought tears to my eyes.  While I like to think I’m always proud of myself and my accomplishments the truth is that each time I don’t hear well I feel a little bit bad.  I try to rationalize it away and not let it stop me, but it’s still there underneath.

I’ve had forty years to work on skills such as lipreading, contextual filling in the blanks and assessing body language and facial expressions.  I’m really, really good at it.  Many people are shocked to learn the extent of my hearing loss.  I’m sure I kid myself a bit about how well I do.  Just ask my husband and sisters.  All that said, the coping mechanisms can really easily break down.  If someone doesn’t move their lips much when talking, turns away from me, covers their mouth, glare, being too far away, etc.  And then I am left in limbo.  I’ve heard but I didn’t understand.

So what am I?  No, not in an existential sense.  In terms my hearing loss.  Am I Deaf, Hard-of-Hearing, Hearing Impaired, Late Deafened?  The surgeon told me I’m Deaf. But when I say that to other people they think that means I hear nothing.  I used to think this too.  Another reaction is that people think I know American Sign Language (ASL).  While I love languages and would very much like to learn ASL, I don’t currently sign.

If I say Late Deafened Adult, which I think may be most accurate for me, most people don’t know what this means and just assume it means Deaf.  And again assume I hear nothing at all.

Hard of Hearing (HOH) seems to go over the best.  People usually understand that something is up but still understand that they can talk to me.  I try to explain a few basics that I need to communicate such as get my attention visually before speaking and don’t talk to me unless I’m looking at you.  But they forget.  I do my best to accommodate them.

Once I have my cochlear implant, where do I belong?  Which checkbox or category is me?  And how do I explain it so that people can understand what my hearing ability is?

How Deaf Am I?

I stopped cheating on my hearing tests in the fourth grade.  Each year, we would gather in the school nurse’s office in small groups and listen to tones while wearing big rubber headsets.  The nurse instructed us to raise our hands when we heard a tone.  Always wanting to “do the right thing” in school, I would dutifully raise my hand when everyone else did even if I did not hear the tone.  Finally, I realized that was not the point of the exercise.

My official diagnosis of sensorineural hearing loss had begun.  In those days, the early-mid sixties, the prescription was to sit in the front of the class.  I don’t know if my parents received any other advice or guidance.  At one point I seem to recall a suggestion for speech therapy to avoid impact on my speech due to my hearing loss.  Again, I have no memory of what reaction or questions my parents may have had.  However, no action was taken.

I was an excellent student, always.  The accommodations I needed I was luckily able to make on my own.  Sitting close to the teacher, looking at people when they talk, etc.

I always recognized my hearing loss and generally would not hesitate to let people know.  The challenge was that because I did so well and did not wear hearing aids, it has always been invisible.  So even, if I tell those around me what I need, such as get my attention visually before speaking to me, they forget again and again.  It’s tiring and I’ll admit that at times I give up.

Like many cases of genetic sensorineural hearing loss mine has been progressive.  I rarely got tested because each time I did the information and advice was the same.  “Yes, you have a serious hearing loss.  No, we do not recommend hearing aids.  It could stay the same. It could get worse.  Have a nice day.”  For forty years…

Now I’m fifty years old and coming to a crossroads. My hearing loss has worsened.  My professional situation has improved.  The two are intersecting at a point that is my own personal “tipping point”.  I am expected to attend and conduct more and more meetings at work.  My hearing is at the point where that is becoming trickier and trickier and to meet this expectation is exhausting, so exhausting.

I decided to go “back to the well”.  At this year’s annual physical I asked my primary care physician to help me set up an evaluation and exam for my hearing.  Luckily, I still live in the Boston area and my primary care doctor is at MGH.  She schedules an otology appointment and an audiology appointment at Mass Eye and Ear.  The last time I visited Mass Eye and Ear was in the early eighties.

My visit to Mass Eye and Ear turns out to be very weepy.  Weepy?!  Auugh.  Embarrassing.  First I speak with the otologist.  She is very kind and professional.  Almost immediately, when I begin recounting my hearing loss history, my family history of hearing loss, and the current challenges I face, I burst into tears.  There’s a box of tissues nearby so I try to console myself by assuming I’m not the first weepy patient.

Next, I wait for an audiologist to conduct a hearing test.  I HATE hearing tests.  I know I will fail and I will fail badly.  Must we document my failure?  Isn’t there a simple blood test or scan we could do instead?  The failure is tough because there’s nothing I can do on my own to improve the situation.

The hearing test begins.  At first simple, each ear, tones of different frequencies.  Raise your hand when/if you hear anything.  The next part, word recognition is impossibly hard for me.  Background noise is added, a man’s voice plays.  He says “Ready” and then a word.  I am supposed to repeat the word.  For the most part, 80% of the time, I cannot do this. My normal communication ability relies on lip reading, context, and asking someone to repeat or rephrase if needed.  Again, I burst into tears and the audiologist offers to take a break.  I become depressed and sullen.  The audiologist is very sympathetic and asks me to try and guess because she needs this feedback in order to make her assessment.  I am not my best self and I am deeply embarrassed.

The audiologist says I may be a candidate for a cochlear implant.  We discuss briefly and I mention some of my initial concerns and fears.  I am very active and would this impede my lifestyle.  It’s a permanent decision and would it close off future options that may develop targeting restored nerve function.  Will it really improve my situation on a daily basis.  I’m terrified of hospitals and medical procedures.  Etcetera, etcetera.

My final stop on this day is back to the otologist with the audiology report.  She reviews the report and says it’s more or less what she expected to see.  Yes, I am a possible candidate for cochlear implant.  She explained the next step would be to further evaluate my suitability by scheduling a day of appointments for additional testing, such as a cat-scan of my cochlea.

I cry some more.  I say that I’m afraid of surgical options because I value my intact healthy body, which has never even had stitches.  She says talk to other implant users, such as my brother, take the next step regarding evaluation, and get more information.  Once we have done the full evaluation then I can think about it.

I ask the otologist “how deaf am I?”.  The answer is that it’s tricky to define deafness in a simple way because I have hearing in some ranges. However, the otologist tells me that from a practical communication ability standpoint I am Deaf with a capital D.

I am fifty years old and I just learned that I am Deaf.  Who knew?  Huh.

September – October 2011

Barbara at her 50th birthday party

Barbara is 50