What I Wish For

I’ve been asking other implant users about their experience to try and guess what it will be like for me.  Most of what I hear is very positive.  A very common comment is, “Why did I wait so long?”

Just yesterday, I heard from another friend of a friend, who is an implant user, and he replied to some questions I had.  I loved his response because it really affected me and made me realize that this is what I wish for…

“It is very exciting to get the implant, congratulations on your decision to do it. It took me more than 5 years to finally decide to do it. I believe you’re an ideal candidate in that you had acquired speech before you lost your hearing.

It’s been about 10 years since I was implanted, so it’s hard to remember those early days but I do remember it being an amazing experience. To hear things I hadn’t heard in years and be able to hear people without lip reading just blew me away. I do remember the first time I tried using the phone. I called my parents and at first they didn’t even realize I was calling them without a TDD/relay operator. It was just incredible.

I recall it taking about 3-4 weeks after activation before things really started to “click” for me. It was a gradual process which continues for years after activation. Even today there are times I will hear a sound and be able to pick out exactly what it is and just be amazed that I can do it. You do have to be patient, and you’re correct in that each person’s experience is going to be different. Given that you learned to speak before losing your hearing, your brain is already familiar with the type of input it will be receiving through the implant, and so it should be a relatively easy transition for you.” – Steven

“To hear things I hadn’t heard in years”… I can’t even get my mind around that statement.  Wow.

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Why Does MEEI Insist on Calling Me???

Okay.  I’ve complained about this before but I’m going to complain again.  I can’t understand why MEEI insists on using the telephone as the primary means of communication with patients who have severe hearing loss. 

I just received voice mail from MEEI reminding me about my surgery and letting me know what time and where to show up.  Here is what I think they said.  Note the operative word is think.

” Hi Barbara.  This Sandra (?) calling from Dr. Sullen’s office. Just a reminder to [indecipherable connector phrase?] surgery on March 1st.  You need to report at 5:30am to the S floor for surgery.  Any questions you can call me at 617-57?-?50?. Thank you.”

Now this is important.  It’s surgery.  I want to be sure I receive every detail.  In the voice mail I miss one small phrase and can’t be sure of the phone number.  2’s and 3’s sound the same to me.  I try not to waste much time getting annoyed or overly anxious.

Voice mail is about THE worst way to communicate with me.  I’ve told them so in writing more than once.  If any organization were to be sensitive to the special needs of the hard of hearing community you would think…

So now what I need to do is ask a hearing person to listen to the message for me.  Sigh.

p.s. Dear MEEI.  I would be more than happy to work with someone in your organization to discuss strategies, alternatives and  best practices for communicating with hard of hearing patients.  Feel free to leave a comment.

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.

The Amazing Human Ear

As I’ve learned more about my own hearing loss and how the cochlear implant works, I’ve come to appreciate how amazing our hearing sense is.  The design and ability of our ears is truly impressive.  Here’s a good YouTube video (1min 20sec) that shows the mechanics of human hearing.

poster depicting anatomy detail of human ear

Anatomy poster of human ear (seen in MEEI surgeon's office)

 

The following images are from a research paper I found online.  I liked them for their clarity and simplicity.

drawing of working parts of human ear

  drawing of hair and nerve cells in cochlea. top normal. bottom damaged

Cleared For Take Off (aka Surgery)

A morning of pre operative appointments at MEEI.  I’m poked, weighed, questioned and measured.  Frankly, I think I bore them all a bit since my health history is remarkably uneventful.  Don’t get me wrong.  This is a blessing that I do not take for granted.

I’m told the details of what to expect the day of surgery as well as the post-surgery recovery period.  The surgeon tells me that the surgery is actually the smallest part of the cochlear implant experience.  While intellectually I can understand and appreciate this, the emotional side of me says, “But it’s my head!  My head!”  My husband jokes and says I’m going in for a head transplant.  A couple of the administrative staff  women warn him that this kind of talk is dangerous 😉  In spite of that, it was nice to have him there.  Takes away the worry  and anxiety of not hearing something, or not hearing something correctly.

After 2 weeks of healing I can resume normal activities.  After 3-4 weeks I should be “activated”.  Activation is when you meet with the audiologist and receive the external equipment that makes the implant do its magic.  The audiologist will program, or map, the device so that the initial sounds are comfortable.  The mapping process happens several times as you adjust to the implant.

I am nervous.

I am excited.  Sometimes so very excited.

I am dying of curiosity.  How will it be for me?  What will I hear?  How quickly will I adjust?  etc., etc.

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?