Status Quo

Today I turned 53. It's my 2nd birthday since I lost my hearing.

I don't feel any different than yesterday. Certainly no different than being 52. Birthdays are just days that mark the day you were born, but the business of living isn't all that different from day to day - the present circumstances of life change slowly. Barely noticeable. Routine. Even mundane.

No different, that is, until something randomly and unexpectedly changes your status quo.

"Hmm," I said, mostly to myself as I reached up and ran my finger along the microphone of my hearing aid. "No wonder I can't hear anything. My battery's gone out. I don't seem to be getting the warning tones anymore."

"Or ---- maybe you're just not hearing them anymore," my daughter adds nonchalantly.

BAM. My status quo just changed again. I guess my new status quo is that my status quo is anything but status quo.

It had been such a nice day until then.

When you can't hear...

...you smile a lot. Not a cool, sexy, confident, "I'm-enjoying-life" smile.

It's a doofus smile. 

You smile because you can't really think of anything else to do or say. You totally missed the conversation, not just once, but several times. And when the hairdresser looks you in the eye and raises her eyebrows at you, you cannot help but smile that silly, dimwitted smile. And, as if that's not enough, you add that goofy nod of your head. Yep. You're a doofus.

"I'm almost totally deaf without my cochlear implant," you tell her, and the almost-conversation ends abruptly. Sitting in near silence for an hour and a half while she colors and cuts your hair is an exercise in patience. You know she wants to talk because she awkwardly converses with the client in the next chair. Then she comes to stand in front of you and asks a question of you --- perhaps for the first, or maybe the fourth time.

And what do you do?

You smile. And you nod your head.

Never Mind

The most frustrating part of being hard-of-hearing for me is having to ask people to repeat themselves. It's a nuisance, I know, for others to have to repeat their words over again and even again before I can understand what they are trying to tell me. It's not easy holding a conversation with me.

I'm accused of not listening. I'm criticized for tuning out. I'm chastised for not paying close enough attention.Truth is, I'm listening very hard. I just can't make sense of everything like I used to.

But the worst thing you could ever say to me is "never mind." Two little words that cut me to the core.

I understand that people get frustrated with me. And you may think that what you've said "isn't that important anyway", but if it was important enough to say once, it should be important enough to say again.

Please. Don't leave me out. Understand my frustration with hearing and listening. This cochlear implant hearing is really hard. Tell me what you said again. And again, if need be. I want to be a part of the conversation. Really, I do.

For hearing people, here are tips for speaking with someone who is hard-of-hearing: 

--Whenever possible, face the hard-of-hearing person directly, and on the same level. 
--Your speech will be more easily understood when you are not eating, chewing, smoking, etc. 
--Reduce background noises when carrying on conversations -- turn off the radio or TV. 
--Keep your hands away from your face while talking. 
--If it's difficult for a person to understand, find another way of saying the same thing, rather than repeating the original words. Move to a quieter location. 
--Recognize that hard-of-hearing people hear and understand less well when they are tired or ill.
--Do not talk to a hard-of-hearing person from another room. Be sure to get the attention of the person to whom you will speak before you start talking. 
--Speak in a normal fashion without shouting or showing impatience. Speaking too loudly often distorts words more.
--A woman's voice is often harder to hear than a man's, because of its pitch. A woman might try to lower the pitch of her voice when talking to the hard-of-hearing to see if that helps. 
--Speak slowly and clearly. Enunciate your words. Don't mumble.
--If you know from which side the person hears best, talk to that side. 
--It is better to speak directly face-to-face in situations where relatively diffuse lighting is adequate and lights the speaker's face. This allows the hard-of-hearing listener to observe the speaker's facial expressions, as well as lip movements to "speech read". 
--Persons with hearing impairment can also benefit from seating themselves at a table where they can best see all parties (e.g. from the *end* of a rectangular table). 
--Clue the hard-of-hearing listener in when you are going to change the subject of conversation. Doing so might avoid an unfortunate "faux pas" by them.. 
--Avoid abrupt changes of subject or interjecting small talk into your conversation, as hard-of-hearing listeners often use context to understand what you are saying.     
--If you are around a corner, or turn away, you become much harder to understand. 
--Don't walk away leaving the hearing-impaired listener puzzling over what you said and thinking you don't care. 

Many hard-of-hearing are embarrassed that they can't hear. Many avoid crowds or situations that make hearing difficult. Certain environments, such as radios, TVs, and ventilation systems are also a problem for the hearing impaired – especially for those that wear hearing aids.

Reposted from http://growinguphardofhearing.blogspot.com/

Those Who Read My Blog Will Know ----

There seems to be a great influx of "miracle" videos depicting cochlear implant recipients who have amazingly successful and overemotional activations as they hear "for the first time." They've gone viral across the internet and have even been widely broadcast by the mainstream media. Friends regularly post them to my Facebook timeline.

"Have you seen this?"
"I thought you would enjoy seeing this."
"OMG. This made me cry!"
"This made me think of you."

Truth be told -- I don't really believe these reactions. Having experienced a cochlear implant activation recently myself, I know the reality of what it is like. Emotional, yes. Exciting, yes. But the weeping of joyful tears and the extreme emotional reactions of the recipients in these viral videos seems a little over the top to me. And I believe they project false perceptions to the hearing world of what really happens when a cochlear implant is turned on. Though it is a miracle in a sense, it does not miraculously restore hearing as a hearing person understands.

Having only lost my hearing a short time ago, I had been told by my medical hearing team that I would be an ideal candidate for cochlear implant hearing success. And I am. But it is not a miraculous restoration of my hearing. I realize that I am an anomaly in the CI world, newly implanted as a hard-of-hearing person, rather than as a person who was profoundly deaf. The FDA had only recently approved the use of cochlear implants in those with unilateral, or one-sided deafness, like myself. In the past, recipients had to be profoundly deaf in both ears. Maybe this skews my perception. But what I experienced was neither stellar nor phenomenal, and certainly not worthy of weeping and wailing.

Following a "test" of beeps and tones similar to a hearing test, my audiologist adjusted the volume and frequency until I could begin to hear the faintest of sound. She slowly and methodically increased those settings until I could hear the tones, and then finally I could hear her voice. The process took several minutes to accomplish. It wasn't a magical "switch-on" where I suddenly and immediately heard sound and speech, as these viral activation videos imply.

One such video shows a woman who miraculously hears her childrens' voices for the "first time". Unfortunately this doesn't ring true because she was given an implant called the "Esteem." It was not a cochlear implant. The Esteem is an implantable hearing aid, not yet approved by the FDA because it has been deemed "cosmetic". The entire unit is "invisible" rather than worn behind or in the ear. It simply amplifies natural hearing. I wouldn't qualify for the Esteem because my hearing loss is profound, and the Esteem is only available for those with moderate to severe loss -- yet even with profound hearing loss, I am still able to hear anyone's voice -- so how did this woman NOT hear her children's voices???  I just don't believe this woman's story at all. But she duped millions of viewers as her video went viral and she had appearances on the Today Show and on Ellen, who gave her thousands of dollars to have another Esteem implant in her other ear! Great marketing by Esteem, I think, and by that woman, who got both of her hearing aids paid for by Ellen. Wish I'd been that smart!

What these videos fail to explain to the unknowing public, is that each recipient is different, and every activation is different, and that every response to activation is different -- according to the recipient's unique experience and medical history. What they fail to acknowledge is that hearing with a cochlear implant requires the brain to reorganize how it hears; and that cortical reorganization takes months, or even years. It is not instantaneous. These videos don't show the work that must go into making the cochlear implant successful.

But people love a good story. And these emotionally charged videos pull on the heart strings of those who don't know or understand what it's like to be deaf or hard-of-hearing, or what it's like to have a cochlear implant. They don't know they are being misled. They don't know that they don't know. They just love the story. And they continue to spread them far and wide.

So call me a skeptic. Or call me pragmatic. I'll continue to be sent these videos by those who don't know, and I'll continue to quietly delete them from my inbox and timeline. But those of you who've read this blog will understand -- If it looks too good to be true -- well, you know.