Wednesday, July 3, 2013

Privacy, Deafness and Freedoms we take for granted, July 3, 2013

Due to recent events and the fact that tomorrow is the 4th of July, I started thinking about freedoms that Americans enjoy or take for granted, deafness and privacy.  You see, there's been a lot of brouhaha about our telephone conversations being "monitored."  Being deaf, I gave up privacy involving telephone conversations years ago.  I really had to laugh at hearing people having an absolute hissy fit about this.  I began losing my ability to understand speech over a voice telephone in late 1979 - through the early 2000's. By 2000, I was using either TTY's or text pagers.  All were telephone conversations that required a third party to read my text speech to a hearing person.  Nothing was spared.  Health information, credit card information, sensitive conversations.  The Caller Assistant (CA) could have easily shared sensitive information to anyone but didn't.

I will observe my third CI anniversary on October 12, 2013, and I have been bilateral for a little over 17 months.  I don't use TTY's anymore.  I use a captioned phone and a voice-data smartphone.  Today I made some business-related calls using my captioned phone and the connection from the business I was speaking with was not the greatest quality.  I suspect the customer representative was using a wireless headset because the audio kept cutting in and out.  Thank God for voice recognition software.  There was absolutely no privacy during this phone conversation.  There was still a third party using voice recognition software in transcribing the phone conversation for me.

I'm still a deaf person with two cochlear implants.  You think monitoring telephone conversations is lacking in privacy?  What about deaf people whose first language is American Sign Language (ASL)?  Now THAT's an "open conversation"!  Signing for all the world to see. There's nothing secret or private about ASL.  Everybody knows your business.

I recently attended a convention in the Pacific Northwest, and for the first time post cochlear implants, got taken aside by a TSA Agent. I was surprised - I didn't hear any warning bells or see any flashing lights - I am old enough to remember when my Behind The Ear Hearing Aids used to trip magnometers at the airports (pre-9-11) and I would tell security that I wore BTE's and was deaf.  That was the time I usually got "wanded."

Well, Post 9-11, security at the airports has changed, so here's what happened.  I was shown a picture of a human body with "hot squares" that had lit up the wave technology scanner.  It reminded me of Star Trek.  The TSA Agent, who was a woman, patted me down, using the edge of her blue gloved hand. I wasn't embarrassed, but it did make me think about all the fuss about the body scanners allegedly showing the size of body parts, particularly what the guys call "their junk."  The TSA Agent was very professional and no, I didn't feel violated.

Next, she took me over to this machine that spit out a strip of paper and she took the strip of paper and tested me for residue.  Nothing.  I was cleared and I went on my way to my gate to wait for my flight. Now I don't doubt the horror stories of passengers who have been humiliated by improperly trained TSA agents who required the passenger to reveal a colostomy bag in the open or whatever.  Fortunately, these incidents are few and between, and the exception.

I grew up a deaf person in a hearing family.  My view of "privacy" is different than that of Hearing people. 

The revelation that the National Security Agency has been monitoring phone calls or phone numbers is not funny.  I get that.  But as someone who is deaf, uses bilateral cochlear implants, I gave up privacy to a certain extent. Does it bother me?  No.  It is simply a way of life for me as a deaf person with two cochlear implants.  I would rather forfeit a little privacy in order to keep my country safe from terrorists and others who would do us harm.

There were people who died to give us the right to vote, practice what religion we choose, free speech, the right to criticize our own government, and as a deaf person, to choose to hear with cochlear implants.  We now have rights that we didn't have 40 years ago.

As you celebrate the 4th of July, remember, Freedom is not Free.



Monday, June 10, 2013

Residual Hearing: Is it usable?

People who have qualified for cochlear implants often have concerns about losing residual hearing after implantation.

Prior to being implanted with cochlear implants, my body felt like it was in "hyperdrive" all the time.  I was constantly in a state of alert, as I had to work to hear with what little hearing I had left.

That takes energy and it was wearing me out.

Hearing people tend to want to "preserve" residual hearing of their deaf family member.

But is residual hearing usable?

In my case, I heard nothing without my hearing aids.  It had to be the mother of all thunderstorms for me to "hear" thunder without hearing aids. 

Here's what my residual hearing was not doing for me, prior to cochlear implants.  I definitely didn't have any hearing in the speech range, and I couldn't understand speech unseen over the telephone, and depended 100% on lipreading by the time I qualified for CI's.

With my CI processors on, I can hear the doorbell, the heat pump coming on and shutting off.  I can hear traffic go by from inside my townhouse. I can hear birds.  I can hear dogs barking, the phone ring, the ticking of a second hand sweeping a clock.

I am still deaf without my CI processors on.  My silence isn't totally silent.  I hear tinnitus in my ears - it used to be really bad, roaring, hissing, hooting noises.  Now it is more like white noise.  I can hear my Sonicare toothbrush vibrate as I am brushing my teeth.  That's what is left of my residual hearing.

It isn't much.

Over time, I am getting more relaxed in using cochlear implant processors.  I can trust what I am hearing with my cochlear implants.  I rarely startle when people walk into my office (unless I have had too much coffee!)

Hearing with cochlear implants is still a process.  I may not hear a new sound each and every day, but my brain picks it up.  I can hear things as they drop, like the tip of a ball point pen, or a nail, or even pieces of food dropping on the floor. After it has rained, I can hear the squeaking of shoes.  I can hear my feet squishing through already saturated grass.  I definitely hear rain, and yes, I can tell a light rain from a heavy rain.

In my view, cochlear implant processors pick up where hearing aids leave off.  I hear far better with cochlear implants than I ever did with hearing aids, and with CI's, I don't even miss residual hearing.

I had so little left. I would counsel people who are investigating cochlear implants to think about the flip side of the coin.

What ISN'T residual hearing doing for you?  Can you hear the doorbell ring, the teakettle whistle, a child crying, a door knock, an alarm clock ringing WITHOUT hearing aids?  Can you understand speech?  Can you understand speech unseen without a captioned phone?

Again, is residual hearing usable?  If not, and you want to be able to hear, than you owe it to yourself to investigate cochlear implantation if hearing aids are not an option for you.

Technology is growing by leaps and bounds.  We are fast approaching a day where cochlear implants can be implanted and residual hearing can be preserved.

I had nothing to lose and everything to gain.

Amazing.

Saturday, June 1, 2013

A Spring of two Bionic Ears, 2013

The month of May has been a busy one.  I cannot believe it is June already!

I recently accomplished my second solo trip of driving on the interstate at night.  It was an hour and a half trip.  As it was the Memorial Day weekend, traffic was busy. I had my Google maps and my Magellan GPS.  I now can hear and understand the GPS telling me directions.  I also had never been to this particular address before, so nothing was familiar.  I didn't get lost going there and didn't get lost coming home. I am getting better with directionality of sound. So far, so good.

I still am discovering new sounds. The other night I was watching a news feature about a dolphin that had surgery to improve its breathing. I didn't know dolphins made clicking sounds. The birds are still calling to each other.  I can hear more different bird calls now.  I also can hear the difference in cars and trucks idling in city traffic. I hear paper shuffling and rustling in offices where I share adjoining doors.

I still can hear a co-worker snap and chew gum all day long, much to my chagrin. 

There are so many things I am doing now that I never would have done before cochlear implants - driving at night on the interstate, for example.

I am an Amy Grant fan, have been for years, and love her music.  I bought her new CD, "How Mercy Looks From Here,"put it in my car stereo, not expecting to understand any of the lyrics, just the music.  Well, to my surprise, I heard "If what I could see what the Angels see..." out of my right ear. Well, that floored me, because my right ear typically did poorly as far as speech comprehension. I thought about how this talented woman started out singing with her guitar as a teenager, and in her latest CD still sings with her guitar.  I could hear the harmonizing on the CD. I always liked Amy's music and the lyrics because she keeps things real. 

So as audio therapy on the drive home from work, I plan to listen to her newest CD some more.

I am listening to traffic and cars driving by from within my townhouse. A dog is intermittently barking/howling somewhere outside - and getting more persistent. I think the dog is bored.  It is funny, because before cochlear implants, my townhouse was a lot quieter! Not any more!!

It has been an amazing journey since October, 2010, when I was first implanted in my left ear. I am still processing new sounds.  I am still stunned by how deaf I am.  Cochlear Implant technology continues to grow by leaps and bounds.  Already, my cochlear implant company has a new BTE CI processor coming out. Computer technology and telephones are now adaptable for the deaf. Social media like Facebook, Twitter, e-mail, Skype, Face Time now bridge the gap between the hearing world and the deaf world.

I always felt there was something missing from my life, even with hearing aids. With cochlear implants, my hunger to hear more sound and to have a better quality of life is being satisfied.  I also have been going through a kind of spiritual healing of sorts, and my spirit is at peace.

Isolation doesn't have to be a part of my life anymore.  Neither does loneliness. Thank you, God for my blessings.  I don't take hearing for granted anymore.

For eight plus hours a day, I hear with my cochlear implant processors and have access to smartphones, ipod nanos. I listen to iheart radio, Spotify, and my downloaded tunes.

"Surround Sound," now makes up my world.  Everything has a sound.

My life is still transitioning...!  I still am profoundly deaf, I still am very visual, but I am hearing speech along with lipreading.  The fact that I can understand the GPS giving me step by step directions and hearing the bell before I make my turns tell me this.

Yes. Everything has a sound. Who would have thought I would be hearing out of both ears with two cochlear implants in three years?

A dream realized.

Saturday, April 20, 2013

A baseball game

I recently gathered with friends at a baseball game.  The purpose was two-fold: To support Jacob Landis, who is a CI recipient and is bicycling to all the Major League Baseball stadiums in the USA to raise a million dollars for cochlear implant surgery.  His project is called "Jacob's Ride," and I was privileged to meet this young man.

The second purpose was to educate others about cochlear implants and to provide information to potential candidates, as well as socializing with other cochlear implant recipients.

It was really COLD. I was bundled up in layers of clothing but neglected to do something for my legs.  I should have brought a stadium blanket.  Nevertheless, I enjoyed the game and getting together with friends.

Even sitting WAY up in the bleachers, I could hear the crack of the ball hitting the bat, the cheers of the crowd, and the unofficial cheerleading coaches who coached us how to do the wave. I couldn't get over folks who were in jeans, t-shirts, tank tops in 50 degree weather and drinking ice cold beer.

This is my second spring hearing out of both ears.  The sounds of spring are all around me, people riding on motorcycles, the sound of weed trimmers, lawn mowers, dogs barking, and the birds serenading me in the early hours of the morning as I leave for work.

Money is still a huge obstacle for many who qualify for and desire cochlear implants. This was one of the reasons Jacob Landis launched his project, "A baseball for hearing."

The cost of cochlear implant surgery is slowly coming down.  Most health insurance plans cover 80% of the surgery.  The co-payments can be expensive.

The dog is barking non-stop.  I do not have any dogs or cats, but I can hear the neighborhood dogs barking through the walls of my townhouse.

I gave some thought recently of how to explain my deafness in abstract terms.  Most people have heard the roar of the engines of a 747 commercial jet as the plane prepares to take off a runway.

Without my cochlear implant processors on, I no longer hear it.  That is how deaf I am.

Nearly three years ago, on October 12, 2010, I had cochlear implant surgery on my left ear. On February 29, 2012, I had cochlear implant surgery on my right ear.

I made a deliberate choice to hear. I'm so glad it did.  I just heard a plane overhead, and smiled.

Having bionic ears is pretty cool.

Sunday, March 31, 2013

Deaf but not exactly Hearing, either

Today is Easter Sunday.  It was cloudy, rainy and chilly.  It was a good day to stay inside and read.  I just finished reading the Kindle version of "He is not me," by Stuart McNaughton.  As a deaf person who has grown up in a hearing world, I could identify with Stuart.  Stuart lives in England and he just published his book.  Every deaf person who is oral, speaks and lipreads, and grew up in a hearing family should read the book.

I have changed and grown so much since first being implanted in my left ear in October, 2010. I had my right ear implanted in February, 2012.  Yesterday was Doctor's Day, and I would have liked to have thanked my surgeon yet once again.  He is on the West Coast now, so distance separates us.

Cochlear Implants allows me to function as a hearing person each day as I put on my cochlear implant processors and leave in the early dawn hours for work.  Yet, every day when I come home and get ready for bed at night and lay down in bed to sleep, I am deaf again.

Cochlear Implants are not a cure for deafness, but it certainly has made my existence in a hearing world easier.  I no longer struggle to understand conversations in a noisy environment, at work, or in my everyday interactions with a hearing public. I am a more relaxed driver now that I can hear emergency and police sirens long before the vehicle enters my field of vision.

I definitely have more confidence in myself.  That has been a long time coming. It has been an experience going from a "no you can't do that because you are deaf" mindset to "I can do these things with my cochlear implants." For so long, deaf people have been held back because of their disability. I certainly was limited by my deafness. Absolutely.

I see a future where I contribute my knowledge and skill set in situations where deaf people may need reasonable accommodation in the workplace while recuperating from cochlear implant surgery.  There is a knowledge gap among medical personnel, human resources and management when it comes to reintroducing a newly implanted person back into the workforce.  Many supervisors really don't know how to accommodate someone who is deaf and newly implanted with a cochlear implant, or two. 

I still remember with the utmost clarity the day I went on a job interview, freshly out of graduate school.  I had just finished telling the interviewer my capabilities, only to be told, "That's fine, Jane Doe, but what is it that you CAN'T do?"  I would love to go back in time and tell that person, with cochlear implants, I can fully function in the workplace, including answering the telephone!

I still have my deaf habits.  I am still a very visual person.  I still lipread, but I am also hearing what I lipread.  To this day, I prefer backing my car into a parking space so that I can see in front of me when I am pulling out of a space.  I also toot my horn when backing out of a parking space.  Not because I can't hear other people or cars.  I still drive with my day light running lights on.  I also will turn on my headlights when I am passing a semi truck on the interstate so the truck driver can see me.  All because of habit, and years of being profoundly deaf. I'm still profoundly deaf. That hasn't changed

Helen Keller once said that deafness cuts off one from people.  Well, with cochlear implants, that no longer has to be the case.

I no longer feel isolated.  As a single deaf person, I am very good at entertaining myself, and I had to learn to be alone and not to fear it.  I rarely am bored because there is always something to do. If I feel lonesome, all I have to do is e-mail someone, call someone, or do something for someone who has a need.

I still continue to be stunned at how deaf I am.  I still am in awe of what cochlear implants are doing for me.  I still enjoy hearing the birds in the early hours of the morning as I leave for work.

Learning to hear with cochlear implants has been the hardest thing I have ever done, but also the most rewarding.

Amazing.

Wednesday, March 27, 2013

The Smart phone version of climbing Mount Everest

My captioned phone at work is out of commission and needs replacing.  I needed to call a doctor's office to confirm an appointment I had for this Friday.  I had my audiologist remove the software program which allows a person to use the telephone and block out all sound, including your own voice.  For Hearing Aid users, they may have a microphone-t-switch that allows for more clarity of sound and speech over the phone.  I have a iPhone 4S with a voice and data plan.  I had thought the phone was incompatible with my cochlear implant processor until someone told me just have the audiologist remove the t-coil program and it will eliminate any interference like buzzing, crackling sounds or electromagnetic interference. I did that.  I wasn't using the program anyway.

Well, I got brave and decided I would TRY calling the doctor's office and confirming that appointment.

I took a deep breath and dialed my cell phone. I had no trouble understanding the menu prompts and responded appropriately.  I gave the receptionist my name and pertinent information.  She realized that Friday was Good Friday, and the office would be closed.  April was busy, but I was able to schedule a follow up visit for May 1st.  We had no problems understanding each other and I was able to hear and understand the entire conversation.

For someone who has no hearing memory aside from what I remember hearing with hearing aids, and who has been deaf since age 2 1/2, I not only felt victorious, I felt as if I had climbed the equivalent of Mount Everest, Smartphone style.

This is HUGE.  I never thought in my lifetime that I would be hearing on a cell phone, let alone have a coherent conversation on a smartphone!

It has been two years and five months since I was implanted in my left ear, and a year and one month since I was implanted in my right ear.

I also met my cousins for lunch who are in town for Spring Break.  We had lunch at the Hard Rock Café, and I had no trouble understanding the woman who waited on our table or the Hard Rock Café staff.  My cousins and I had a good lunch and a good visit!

It really IS a brain thing.  Absolutely!  Hearing bilaterally with two cochlear implant processors is truly a blessing.

So here's to Easter Joy, Blessings and rejoicing that I had my first smartphone conversation without captions with someone who I wasn't sure I'd understand speech!

AMAZING. 

Sunday, March 3, 2013

Hearing Memory

As someone who has been deaf since around age two and a half, I have no "hearing memory" of what it means to hear "normally." 

 For me, "normal hearing" with analog hearing aids is my conscious "hearing memory."  I never did like digital hearing aids, even though I wore digital behind the ear hearing aids for ten years prior to getting my first cochlear implant.

It took me a long time - it wasn't until I could "hear" bilaterally with cochlear implants that I had a better sense of my own "hearing memory" and what I wanted in hearing with cochlear implants.

Two years and three months of hearing with one cochlear implant, and one year of hearing with two cochlear implants, I can hear with the aid of bilateral cochlear implants.  I hear environmental noises.  I hear high, middle and low frequencies.

I am very happy with this last mapping, and now feel comfortable in hearing bilaterally with cochlear implants.

Those of us who deafness is "our normal," we want to hear everything.  For me, that means being able to hear my car idle, the gears shift, the turn signal clicking, the 18 wheeler truck's engine idling behind me at a traffic signal.  Being able to hear a jackhammer from inside the kitchen of my townhouse a block away. The sound of birds chirping and twittering in the early hours of the morning.

Here's something that's telling. For someone who was late deafened, the sound of the grocery cart wheels around the aisle made her tense up because she couldn't tolerate the sound.  For me, I had never heard the sound of the grocery cart wheels, but I could tell from the squeaking sound that someone was coming in my direction, and I could say, "Excuse me." 

To me, not having grocery cart collisions in the grocery store is a relief!  There is one sound that I absolutely hate.  The sound of someone chewing and snapping gum in my office all day long. I am learning to tune that particular sound out, but I still do not like that sound.

Some people do not like the sound of wind.  Others find that the sound of a ticking clock bothers them.  When I was growing up, my parents had clocks with pendulums all over the house.  All with a different sound "flavor," and reassuring me as each clock chimed the hour.

Speech recognition continues to improve, but it is taking time. I find that bilaterally, I can hear and understand simple sentences without lipreading.  That was impossible for me to do in August, 2010.

I still am a very visual person, and still have my "deaf habits."  I had someone tell me last week I had a unique accent, and she asked where I was from.  I told her.  I probably should have said this is my deaf southern accent!!  I mean no malice.  Deaf people do have a sense of humor, and it takes a deaf person to understand my humor in this instance!

Hearing bilaterally with cochlear implants continues to be a gift which I cherish everyday.

I am blessed.