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.

Saturday, February 16, 2013

Hearing in Dolby Surround Sound, Version Two

Well after hearing with my new mappings for four days, I definitely hit the Mother Lode of all mappings. 

It took a very talented audiologist and reading about other CI recipient's dislikes, likes and suggestions. It reinforced the fact that hearing with cochlear implants is totally unlike hearing with hearing aids.

Mistake Number One:  Thinking that increasing VOLUME was going to give me the Dolby Surround Sound effect.  Didn't happen.  Fact was, it made things worse.

Mistake Number Two:  Not asking for 100% T-mic sooner.

The realization that my "hearing memory," consisted of what I remember "hearing" with my hearing aids on or off and not "normal hearing."  I haven't heard "normally," since I was about two years old. 

The realization that I WAS born hearing after reading over medical reports from childhood.

Here's one that was telling.  I was two years old. "Imitates dog barking.  Responds to loud clapping.  Presses ear to television to hear it." If I had been born deaf, I wouldn't have had a hearing memory at all, because you have nothing to draw FROM.

Your brain never forgets to hear.  Hearing Memory is something else all together, and hard to explain. If you are a music lover and buy a luxury car, you are going to have quality stereo sound in that car.  Listening to classical music in your Mercedes-Benz, Lexus, or BMW is going to sound like listening to classical music in a concert hall. I will have to win the lottery before going into a dealership to buy a new Mercedes-Benz, Lexus or BMW.

I was in the kitchen earlier.  I heard a blue jay calling. This time, I not only heard the blue jay calling, I heard the rhythm in the bird song.

I never did like digital hearing aids.  To tell you the truth, I preferred the analog hearing aids.

Many CI users prefer to use mapping programs that are quieter when driving in traffic.

Not me.  When you are driving through eight lanes of asphalt going 55-65 mph, you better believe I want mapping programs that allow me to hear in Dolby Surround Sound.  Absolutely.  I want to hear that 18 wheeler truck 3/4ths of an inch next to my car shifting gears and getting ready to pass lanes BEFORE I see it in my line of vision, especially at 5:30 in the morning.

Last night when I was driving home, I could hear two emergency vehicles a mile away before I saw the sirens.  I knew they were coming in my direction and I wanted to respond appropriately.

If I had been wearing my ancient ten year old digital behind the ear hearing aids, those two emergency vehicles would have had to have been riding my car bumper before I heard it.

Lessons Learned.  Hearing bilaterally with cochlear implants is indeed a process.

It still amazes me at how deaf I am without my cochlear implant processors on.  The fact that I managed to even SUCCEED when I did is phenomenal.

Just Amazing.

Tuesday, February 12, 2013

An Early Valentine's Present

Today I returned to the Cochlear Center for my one year mapping of my right ear cochlear implant. It is hard to believe I have two cochlear implants.  I have been hearing out of both ears for a year now.

As I am hearing out of both ears, I was in a better position to communicate to my audiologist my likes and dislikes and what I hoped to achieve through "tweaking" the cochlear implant programs.

I wore digital behind the ear hearing aids in both ears for ten years prior to being implanted with cochlear implants.  In spite of the latest digital technology, one of the things I always hated about digital hearing aids vs. analog hearing aids, was that sounds always sounded quieter or "tampered down."  A perfect example is hearing a fire engine or police car siren.  With digital aids, the computer technology would automatically lessen the loudness of the siren.  That always sounded weird.

My particular cochlear implant has a t-mic, a technology patented by the manufacturer.  I had tried several mixes 50/50, 50/70, and so forth and felt that voices and sound quality needed more.  I didn't necessarily need more loudness of sound (a very common mistake of  ex-hearing aid users), but I wanted to hear more SOUND.  

I told my audiologist, I wanted to increase the t-mic to 100%.  After testing my hearing and going through tones, words, sentences, my audiologist had a better idea of what was needed.

She had the doctoral audiology student do the tweaking.  We switched out headpieces, t-mics, to test that the CI processor was working properly.  Then she switched the t-mic to 100%.

I was definitely hearing more sound.  It wasn't loud or sharp.  My audiologist did clapping to see if I had any facial twitches or reacted uncomfortably to sound.  I was fine.

I also had the audiologist remove the t-coil program as I wasn't using it at all and have no need for it.

As I drove home on the interstate, I heard more sound.  What I realized what I was hearing, I was nearly in tears. I could hear the 18-wheeler trucks idling, shifting gears.  I could hear my tires going ta-click over the asphalt. I could hear the rumble of motorcycles.  I could hear wind.  All this through rolled up windows and a "quiet" car.

I recognized a hearing memory.  With the t-mic at 100%, I am hearing what I remember hearing with analog hearing aids, but more sound, not volume.  I am hearing at all frequencies. I am hearing more middle frequencies, and higher frequencies.

Ever watch a movie in Dolby Surround Sound, or watch a movie on a Home Theater System?  THAT is what I am hearing with cochlear implant processors with a 100% t-mic setting.  Sounds are ENHANCED.

I think I hit the Mother Lode with this mapping.  I was so hungry for more SOUND.

Voices are not scratchy anymore.  AMEN to that!  I go back in six months.  I have a feeling I am going to progress by leaps and bounds.

What a precious early Valentine's Day present!

So here's to hearing more sound in Dolby Surround Sound, Stereo, and High Definition!


Saturday, January 12, 2013

Bilaterally Hearing with Cochlear Implants vs. Hearing Aids

Someone who had been late-deafened recently commented that he never thought he would be hearing as well as he has been with a cochlear implant when first implanted a couple of years ago.

When I was first implanted in October, 2010, I knew intellectually that a cochlear implant was going to be "life changing."

I think the biggest shock for me, as someone who has lived with deafness for a very long time, was how limiting hearing aids really are. Seriously.

I hear far better with bilateral cochlear implants than I ever did with hearing aids.

By November, 2011, I wanted more.  I qualified for bilateral CI's in April, 2010, after testing within the physical limits of the audiometer, but my health insurance would only pay for one cochlear implant per calendar year.  My CI audiologist thought I was ready for a second cochlear implant, and my response was an enthusiastic "YES"!

After nearly a year of bilateral hearing, OMG, how time flies!!  I have better directionality of sound.  I am getting better at discerning where sounds are located.

I definitely hear high frequencies.  I can hear hydraulic hammering three townhouses away as workers replace a roof and roof shingles from INSIDE my home office.  I can hear cars and traffic approaching blocks away before I even SEE the car, truck, emergency vehicle.

I am getting better at understanding speech without the aid of captioning.  I still use it on the phone and television to "cue" me in.

I also have observed that there are a lot of "hearing" people who are actually hard of hearing and do not realize it.  We live in a very noisy world, and there are people who are slowly losing their hearing due to noise exposure - whether it is environmental noise, or long-term wearing of MP-3 Players, iPhones, iPod Classic, or iPod Touch. We have a generation of people who are slowly going deaf over time.

My world has expanded beyond my wildest imagination.  I have made so many new friends, and continue to expand my social network of friends.  As some friends have moved away and or in the process of moving on, others make my acquaintance.  I have friends of all ages.  I have two jobs: one that is my so-called "day job," and my second job, which is volunteering as a mentor to people who are just starting their hearing journey with a cochlear implant or two.

I hope to improve my speech discrimination to the point where I can have a quality conversation on my iPhone without captioning.

I would like to learn to read music, and to play a musical instrument such as the piano and the guitar. 

I would like to learn to sing and to carry a tune.

The fact that I can even HEAR on a cell phone, let alone hear birds, is still stunning to me.

How does one adequately explain hearing with hearing aids vs. hearing with cochlear implants is like watching a black and white television vs. a color tv?

My world is no longer quiet, except for when I take off my cochlear implant processors to recharge the batteries and to sleep.

I chose to hear with cochlear implants once I learned hearing aids were no longer helping me understand speech.

I am pretty happy as a bilateral cochlear implant recipient, and I continue to reap the benefits of the cochlear implant technology.

William  F. House, M.D., who invented cochlear implants, died December 7, 2012, at the age of 89 in California.

I am thankful to Dr. House for his invention.  Hearing with cochlear implants has indeed been life-changing for me, and for countless others.

EVERYTHING has a sound.  How amazing is that?