Music and a White Christmas

I made the four-hour trek to my younger sister's house for Christmas. I did well with the drive post-implant. I am with my younger sister, my brother in law and several of my nieces and nephews.

One of my nieces sang and played,"I'm Yours," by Jason Mraz for me on her guitar for me. It sounded like music to me for the first time post-implant.  We all went to church Christmas Eve. I met the family of two little girls who had been implanted with cochlear implants. They were visiting family in the area. I also met the 18 year old niece of a pastor at the church where I was visiting. She had been implanted since age 7. She is in college now and was visiting her aunt and uncle over the holidays. All three girls do well with their implants.

Listening to the singing at church, I was able to recognize lyrics here and there. I would recognize the familiar Christmas hymns first before recognizing lyrics. Music with several instruments playing at once still doesn't quite sound like music, but I can pick out the keyboards, guitar.  Church was noisy. I had a bit of trouble following conversations, but I am not straining to listen. The cochlear implant and sound processor are doing their job.

It started snowing last night.  We are experiencing blizzard conditions, and I may not be able to get home tomorrow. We will see what the roads are like.

I have had quality conversation with three of my nieces, and can converse with the entire family without too much trouble. As the ages of my nieces and nephews vary from age 13 to age 6, the conversations vary. I can understand my six year old nephew a lot better than I did when I was wearing two behind the ear hearing aids.

I think I am progressing post-implant quite nicely. My younger sister's house with five of my nieces and nephews, is indeed noisy. They all have techie toys, Wii games, remote controlled cars, so I hear all kinds of beeps, clicks, whirring noises, and even bickering among the kids. Merry Christmas!

More Sounds, Bone Chilling Cold and some Christmas Enchantment

I can now hear feedback from the subway train operator's public announcement system, shrill braking from buses, trains and trucks. A very high "EEEEEEEE" sound. It has been bitterly cold and windy. I definitely hear the wind.  I hear snatches of words and sentences without visual cues. A tiny victory: actually hearing the message to press "five" from the phone menu for renewing prescriptions when dialing my internist's office.  It has been one month and three days since the cochlear implant was turned on.

Voices are sounding more "human."  A package from a beloved aunt and uncle arrived recently.  I opened it, and it was a beautiful glass snow globe which plays "Have yourself a Little Merry Christmas," and I recognized the tune.

My world is still noisy.  I can now hear the hinges of my office door squeak as it opens. I can hear someone talking over the speaker phone in the next office, although I cannot understand any of the conversation. I can hear a co-worker pop gum in her mouth while she chews gum. I hear environmental noises outside, and hear people walk up and down the corridor with my door closed.  I can hear a person's radio playing Christmas music in the main office when I go upstairs.

I think the reason I am sleeping so soundly at night is because my brain is tired from processing all the new sounds and noise. My brain is finally matching up sound with what it hears.  Speech is sounding less disconnected and more connected.

Still, when I think back of my Activation Day, November 11th, when people's voices sounded underwater, my wild and crazy first week of sound, and now, sounds are starting to make sense to me.  I am tired, but I am not wiped out or exhausted.  What a huge difference from "hearing " with a cochlear implant and "hearing" with hearing aids.  The implant and the sound processor continue to do its job.

Technology is so amazing, and hearing with a cochlear implant is such a gift.

A Crowd, Some Conversation, a Hanukkah Celebration

Yesterday evening I participated in a Messianic Hanukkah Celebration. This was my first such invitation to a Hanukkah Celebration. It was also my first time in a social gathering with several people, post-activation.  I still am doing some "deaf" behaviors, such as using my vision, lipreading, observing and maybe being a little on the quiet side. Conversations are not always coherent to me, so yes, I lipread. Speech is sounding more "human" to me.  I am listening with my cochlear implant, or trying to.

I thought back to my younger sister's analogy of how my brain is "pinging" for sound. It is kind of like this. Words which initially sounded "underwater," "echoey," are starting to connect with my visual picture of lipreading a conversation.  The sound is starting to connect with lips moving, if that makes sense.

I found most of my Christmas CD's, with the exception of the N'Sync Christmas CD. I will look some more for that one. I put on Amy Grant's "A Christmas to Remember," and recognized the tune but not the lyrics. I can pick out the instrumentation, whether it is piano, drums, horn, whatever. I hear snatches of song, such as ,"Nat King Cole," but it sounds like Amy Grant with a scratchy voice. I do not know if that is me, or if the CD is dirty or the CD player in the car is dirty or what. People's voices will sound human but "scratchy." 

 I also think  there is some vibrating in the singing - the voice, that is, while listening to various CD's. If one has ever heard opera, you know what I am talking about, whether a voice is soprano, alto, etc. The hearing of vibrating voices in singing is different. It is at a different frequency than I have heard.  I also think that I am hearing at "normal" frequencies vs. "amplified" frequencies, like you would with a hearing aid.

I had a good time with friends and liked my first Hanukkah Celebration. I also liked the food and took second helpings, much to my friends' delight. They are a young married couple, and have been married three months. It was a bit disconcerting to see Hebrew/English being recited reading from a smartphone, but I had to remind myself that these people grew up with technology!

I was able to carry on conversations without too much difficulty. If I goofed and didn't understand a word or missed a sentence, that was okay. I was with friends who knew for the most part that I had received a cochlear implant and am getting used to it over time.

I have two more holiday gatherings to go to this month, as well as a retirement party for a coworker who is retiring at the end of this month. I will see how I do in socializing post-activation.

I do have some "off" days with my cochlear implant.  I will sometimes have trouble localizing where sound/noise is coming from.  My office building has been undergoing extensive renovation, so things can get noisy.  I kept hearing this "bam" noise, and kept opening my office door out into the corridor to locate the noise. Nothing.  Then I turned and looked out the window, and realized the noise was coming from the construction outside.  I felt a little foolish.
Sometimes I will just have to stop, observe, listen, be quiet, in order to figure out where the sound/noise is coming from.

Well, tomorrow is another day post-activation.

A Tune, Snatches Of Words, and Bells

It has been 24 days since I had my cochlear implant "activated." Today I went shopping for some Christmas decorations and small gifts. I went to a Pier One Imports store.  When I went inside, Christmas music was playing, and I recognized the tune before the lyrics - the tune was " Jingle Bells," and I distinctly heard the words, "Jingle Bells," and ..."all the way," and for the first time since activation, it sounded somewhat like music.  How about that?

Next, I went into a Barnes and Noble bookstore to buy some books. I had a little trouble understanding the cashier when she asked if I wanted to donate a Christmas book for a promotion they were doing. She was talking a bit too fast for me to lipread, although I heard her talking. I asked her to repeat what she said. That tells me while I am listening with my cochlear implant, understanding speech is still challenging. It really is a day to day experience.  Speech is sounding more "normal," to me, again, depending on who I talk to, and less echoey. People's voices are sounding more human, and less like hearing someone talk underwater.

I bought a silver wreath made of bells that jingle from Williams-Sonoma, and hung the wreath on the door leading to my basement. Since the TV is down there, as well as my laundry room, the door wreath will "jingle" every time that door is opened. Years ago, I bought a door ornament with bells that you hang on your door. I will hang that on the inside of my front door.

I misplaced my Christmas CD's. I am looking for the CD's. I especially want to listen to a Christmas CD that was recorded by N'Sync when they were a popular group. I loved listening to the harmony of their songs. I also want to play a Christmas CD or two by Amy Grant. I have been an Amy Grant fan since she first started singing. I'm curious to hear what the CD's sound like now. I also like Michael W. Smith. There are other Christian rock groups I listen to as well.

I even picked up Jackie Evancho's new CD. I know she sings really high notes, but I want to see if I can hear high frequencies at all. I think I am hearing some things at high frequencies, but I have to have someone identify that particular sound "flavor," because I  won't always recognize the sound.

Still, when I think back to my last encounter with a cashier in a Barnes and Noble bookstore, before my cochlear implant surgery, to where I am now, post-cochlear implant and post-activation, this is progress!

Back to Work, a Sound Experiment and a Memory

I returned to work for the first time since my cochlear implant surgery. The sounds on the subway train sound the same, except for the public service announcements. I can't understand the PA announcements yet. To my delight, it was a "quiet" day at work. A lot of my office co-workers are on official travel for a training conference until next Monday.  I can hear people walking back and forth in the corridor outside my office door. I can hear people walking around the corridor when I can't see them, thus avoiding any near "people collisions."

I am still relying on lipreading as well as listening to people's voices. The clarity of speech is getting better, depending on who I talk to. The huge difference is that I am not exhausted after a day of "listening" and "lipreading." Don't get me wrong. I am tired after my first day back at work, but I don't feel absolutely wiped out.  In hearing with a cochlear implant, lipreading is an added benefit. Thank God for all that relentless auditory training and rhythm classes. If you don't use what residual hearing you have, you lose it. That's my theory.

The sounds of traffic are sounding more "normal," post activation.  I now see the wisdom of not wearing a BTE hearing aid in the non-implanted ear, and wearing the sound processor over the implanted ear constantly.  You can't really get the full benefit from a cochlear implant by "practicing" for a few hours with a sound processor after implantation, and then taking it off or whatever. You don't do that with glasses, or you shouldn't. Otherwise that is a wasted prescription for glasses as well as a waste of your money. Contact lenses do take some time getting used to.

Music is still a challenge to me. On the way home, while driving in city traffic, I decided to "tweak" the radio in my car to see if the tweaking helped my listening experience. Until now, music was still noise. I did. I tweaked the treble, bass, and fade controls. Then I put on a Sheryl Crow CD. AHA!!  I could hear the singing and recognized the singing as that of Sheryl Crow, but didn't understand the lyrics as of yet. I got the rhythm. I could identify the various instruments on the CD.

I could "tweak" the radio so I could enjoy what my ear perceives as music and enjoy it, after 19 days of being "activated."  See, my hearing friends would "tweak" my car radio and stereo receiver at home for me. They would tweak and fiddle until the radio or stereo receiver sounded "normal" to me when I was wearing hearing aids. Whoo Hoo! I'm on a roll here!

Years later, I now understand how my father, could have trouble understanding a conversation at the dinner table, but yet have hearing so acute that he could hear the "rickety tick-tick" of our black Labrador retriever's toenails across the kitchen no-wax tile floor, and hear the roll of toilet paper going in a downstairs bathroom. This is a true story. My dad was a veteran of Korea and Vietnam, a career Army Officer, and had been exposed to the constant barrage of artillery fire. I had my own bedroom downstairs with a private bath in our house. One night I got up in the middle of the night to pee and was startled by feeling the vibration of my father pounding on the bathroom door. Here I was, sitting on the toilet and wiping myself when the banging started.  I got up, opened the door, and was quite startled by my father, in his underwear, holding a rifle in his hands (unloaded, but I didn't know that). Why I didn't scream, I am not sure.

My mother, of course, was sound asleep upstairs. She would literally sleep the sleep of the dead. I am not kidding.  A fire engine could roar through their bedroom and Mom would sleep right through it. My father was the one who was the light sleeper of the two.

He said that he heard a noise and said Mindy, it is two o'clock in the morning, and wanted to know what I was doing.  I was really rattled at seeing the rifle, and said, "Daddy, I was on the toilet, I had to go to the bathroom, and what you heard was me using the toilet, and then the roll of toilet paper rolling."!  He said oh, and said well, go back to bed. It took me a good while to go back to sleep!

I couldn't understand until now, why my father could pick out and hear certain sounds, but yet have trouble with speech discrimination.  Another "Aha"! moment.  He is probably on a cloud somewhere in Heaven just laughing at the irony of my whole cochlear implant experience to date. I don't mean laughing at me to be mean, but rather laughing as if to say, "Now you get it"! My mother is probably sitting right beside him on that cloud, shaking her head at my father.

I grew up in a family that appreciates music.  Being deaf, I learned to appreciate music during deaf school days by placing my hand to feel the vibration of the grand piano.  Tonight I found myself reverting back to that "feeling" behavior when listening to the Sheryl Crow CD.  I placed my left hand on the left armrest at a red traffic light to "feel" the rhythm as well as "hear" the music.

I could take the sound processor off, sit on the floor, place the small of my back against a speaker and "listen"  to rock music that way and "understand" the music just fine. At rock concerts, my hearing friends knew to lip sync the lyrics for me. In case you are wondering, I didn't wear the hearing aids at the rock concerts. The music was loud enough WITHOUT the hearing aids. Again, I didn't go to that many concerts, either.

Appreciating music with a cochlear implant to its fullest is taking time. That's okay, too. My friends, family and I have to unlearn a lot of deaf habits! I already have assigned myself "homework." I'm going to listen to the singing on the CMA awards Wednesday night on TV.
One Hearing Day At A Time!

Tweaking Day Three

Today was my first solo trip as a driver on the Interstate post-activation. I did just fine in spite of heavy traffic during "rush hour" this morning. I still rely on visual clues, but I can definitely hear traffic around me.

I met with the CI Audiologist to be "tweaked." She tested my hearing with the cochlear implant for the first time. Both the Cochlear Implant and the Sound Processor are doing their job.  The new mapping resulted in better clarity of speech (not so much echoing) and sound.  The CI Audiologist also tested my speech discrimination post activation, and I understood every word and sentence, repeating back what she said with accuracy. Now, this happened in the quiet of the audiologist's office with her door closed and no background noise!!

Still, when I think back to August, when I couldn't understand speech at all, with or without my behind the ear hearing aids, to now - today - the technology of the cochlear implant is just amazing.

I even heard an electrode misfiring and was able to tell the CI Audiologist about it. She found the misfiring electrode (on the computer) as I was hooked up, and turned that electrode off. That just blew my mind. The misfiring electrode didn't affect the performance of the cochlear implant or the sound processor.

Thanksgiving will be here in three days. I am so grateful for the gift of hearing with a cochlear implant. In just 11 short days, this wonderful technology has greatly improved my quality of life. It really has opened a whole new world of sound for me.

Bias rears its ugly head again

Today I came across a petition to the Food and Drug Administration (FDA) from an organization called Audism Free America (AFA) . It is a petition requesting the FDA to establish an independent and impartial investigation into the long term physical, psychological, social and cultural impact of the surgical insertion of cochlear implants (unilateral and bilateral) into the bodies of infants, children and youth.

Audism has been defined as "attitudes and practices based on the assumption that behaving in the ways of those who speak and hear is desired and best.  It produces a system of privilege, thus resulting in stigma, bias, discrimination, and prejudice in overt or covert ways against Deaf culture, American Sign Language and Deaf people of all walks of life."

The petition also reads, "Many scholars have referred to the recent proliferation of cochlear implant surgeries coupled with the oral/aural only movement (prohibiting of signing and over-emphasis of auditory technology) as a form of eugenics that may lead to cultural and linguistic genocide of Deaf Americans.  Because these infants and children are unable to give informed consent and are being denied a fully natural and accessible language, cochlear implant surgeries have also been identified as being a violation of human and linguistic rights. Clearly, the FDA needs a more in depth consideration of the moral and ethical issues associated with cochlear implants."
 
Read MY Lips: "Hell, NO"!

I wasn't born yesterday. I did my homework.  I was fully aware of the risks of undergoing cochlear implant surgery. I knew what potentially could go wrong. However, I was so deaf (and still am) that I tested within the limits of the audiometer.  I didn't have anything to LOSE and everything to GAIN.  I was nearly 100% deaf when I started the seven month long journey of GETTING a cochlear implant. I already had done the soul searching, faced my fears, cried, went through quite an emotional roller coaster, cried some more, prayed a lot, by the time I walked into the operating room. I had the unconditional support of my friends, family and co-workers.

I have had my cochlear implant turned on for one week. Hearing is such a priceless gift.  Each day brings an additional gift of hearing. Recognizing a sound I haven't heard for years.  Hearing a new sound and banking that sound into my hearing memory.  I still plan to have my right ear implanted in the near future.

When I read the petition, all I could think of was the undercurrent of ignorance and fear running through this petition.  I am all for nondiscrimination against any deaf person, whether that deaf person is an infant, a child, a teenager, or an adult. This petition is NOT the way to do this.

WHY would any sane mother, father, or legal guardian worth his or her salt, fail to exercise good judgment in deciding what is in the best interest of any deaf infant, child, teenager? You go through enough soul searching as it is, once you find out your child is deaf.

I vehemently disagree with this petition and want nothing to do with this.  I wish cochlear implants had been available to me as an infant, child, or teenager. My parents would have immediately pushed for me to have a cochlear implant.

I'm going to say this again. If you are a parent or legal guardian of a deaf infant, child, or teenager, and you have been given the choice and the opportunity to have your son or daughter implanted with a cochlear implant, TAKE IT. You are seriously compromising your child's future if you don't. If the insurance companies turn you down, try again. Look for alternative sources of funding the surgery and cochlear implant. If I were as wealthy as Bill and Melinda Gates, one of the first things I would do is to create a worldwide charity to provide cochlear implants to all who qualified for a cochlear implant or two and who wanted one. I'm just as middle class as the next person, so unless I hit the lottery big time, this charity won't happen.

What part of "hearing world" did this author of the petition not understand?  Look at the job announcements. 99.9% of the job announcements have this sentence somewhere in the announcement, .."the ability to communicate orally and in writing."  We are in a terrible recession.  It is hard enough for hearing people to find secure jobs and to KEEP them.  Unemployment of disabled people is still at 75% of the population. The last time I checked, spoken English was STILL the predominant language in this country.

My parents wanted me to be as self-sufficient as possible.  Part of that included being educated at one of the finest private deaf schools in this country, and one which still to this day,  subscribes to the philosophy of an oral education.  How many traditional schools for the deaf are still open in this country?!  That should tell you something. 

I AM NOT APOLOGIZING FOR GETTING A COCHLEAR IMPLANT!!!!

I pity the author or author(s) who wrote this petition. I'm still a deaf person with a cochlear implant. Deafness has been a part of me since I was 18 months old.  But why allow fear and ignorance to hold you back from what could be your highest potential as a individual?  I had NOTHING TO LOSE, and everything to GAIN by undergoing cochlear implant surgery.

Ok. Deep Cleansing Breath. I'm going to think nice thoughts and get off my soap box...