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...

God turned the faucet on

Yesterday it rained. When I stepped outside, it literally sounded like God turned the faucet on in Heaven to make it rain on earth. It wasn't a downpour, exactly, but it was a good soaking rain. I didn't hear the "pitter-patter" of rain, but it was definitely rain that I heard. 

I also had to get a medical procedure done, and when my blood pressure was being taken, I heard the blood pressure cuff inflate and deflate for the first time.  I didn't know that made a sound when it did that. 

After I came home, I watched Oprah Winfrey's show. Barbara Streisand was on the show along with Robert Redford. She sang the song, "The Way We Were," on the show, accompanied by a pianist playing the piano.  Well, it sounded different. I could hear snatches of her singing - with the captioning, and I could definitely hear the piano. Not bad for six days of "hearing" post-activation. It isn't music or singing the way I remember it, but it isn't noise, either.

Today I noticed I am hearing more environmental sounds.  When I use the microwave, when I press the keypad, it beeps with each keypad stroke. I can now hear the toast in the toaster pop up when it is ready.

Certain sounds are beginning to be familiar. The ticking of my desk regulator clock. The sound of me typing as I am blogging. I definitely hear the heat pump come on and off, whether I am upstairs or downstairs. When I was watching a car commercial tonight, I heard what was supposedly the sound of wind howling. Whether that was artificially created or the real deal, I don't know. But it had an interesting flavor of sound to it. The sound of a car passing is more familiar. I still hear the turn signal clicking.

I stopped by a grocery store to get a prescription refilled and to pick up a few items. I went through a self-checkout lane after purchasing my items, and to my surprise, I heard and understood this sentence (without lipreading, or any kind of written prompts), "Please take your receipt and thank you for shopping at ... ."  It still sounded kind of echoey and underwater, but it was definitely a sentence.  There are a lot of environmental noises at a grocery store that I haven't identified yet. However, no more grocery cart collisions! YAY! I just can't get over that. And nobody has said "excuse me," to get by me because I didn't hear them.

I stopped by my bank's drive through ATM to get some cash.  The key pad on the ATM screen also beeps. There are different "flavors" of  beeps - one for cash, one for your paper receipt and another to retrieve your ATM card. 

Next, I stopped at Starbucks to get my beloved Venti Skim Latte. The sound of hissing of the frother for steaming the milk is higher than I remember it.  

I am also getting used to finding the "sweet spot" on my head for the headpiece magnet so that the cochlear implant and the sound processor can do their job.

More sounds in bits and pieces

Today I went to the dentist to finish up some dental work which had been postponed because of the cochlear implant surgery. I heard that drill whine for the first time. It did not bother me, but I now understand why people don't like going to the dentist.  I don't like getting those shots in my mouth. THAT has always bothered me.

After I finished my dental appointment, I returned to my car and put in Nelly Furtado's CD "Loose," just to see what I would hear. It did not sound familiar to me post-implant, but I could hear the percussive instrumentation and rhythm. I had the CD on at a lower volume, probably to the relief of my fellow drivers on the road.  When wearing hearing aids, I'd crank up the music.  Okay, it's going to take some time before my favorite CD's sound like "music" to me again.  I get that.

I had no problems post-implant recognizing the rhythm of any music when I got activated five days ago. The music just sounds different and I can't yet hear or understand the lyrics.

When I returned home, I started sweeping up leaves in the back patio. That was a slightly different sound from raking leaves yesterday. 

I also heard a plane flying overhead toward the airport which I recognized immediately. The only difference between hearing a plane post-implant and before with hearing aids, is the fact that I am probably hearing the plane at normal volume instead of louder volume.

I am glad I finished what yard work I did today. I bagged four 30 gallon bags of leaves. It is supposed to rain tomorrow and the day after.  Will I "hear" the pitter-patter of rain? I wonder.

A Noisy Sunday and a Bully Pulpit

For the first time since before my cochlear implant surgery, I went outside and raked leaves, gathered up the leaves and bagged them. The sound of raking leaves sounds very different and unfamiliar when hearing with a cochlear implant.  The sound of a car passing is beginning to be familiar in that I recognize that particular sound as a car passing by.  I heard that sound for the first time INSIDE my home and again when outside. The clicking of the keys as I type this blog is beginning to sound familiar. I am hearing more environmental or "background" noise. I now hear the heat pump turning on. I hear my regulator clock ticking and recognize the sound for what it is.  Later I was watching the program 60 Minutes on TV and heard that clock ticking. I didn't know the 60 Minutes clock ticked the seconds, or minutes to the hour. 

I am now recognizing speech from the news programs and am able to understand some spoken speech while lipreading the various news anchors. Often, the news anchor speaks faster than the captioner can transcribe the spoken speech, and I still understand what is being said. 

Getting used to a cochlear implant is a unique experience for each person who is implanted with a cochlear implant. It is very unfair for someone who has been hearing all her or his life to form an opinion such as "Deaf people who have not heard sounds have a difficult time adjusting to the cochlear implant," or assume that once you have a cochlear implant, are activated, you can automatically use a telephone without assistance.  I may or may not be able to use a telephone in a month. It might be six months. I simply don't know.

My deafness progressed from severe to profound to nearly completely deaf over time. Your brain never forgets to hear, whether the deafness is acquired or you were born deaf.  Hearing people need to understand this.  A cochlear implant doesn't CURE deafness.  I am "hearing" 8 hours a day with the cochlear implant, but I still have to take OFF the sound processor to sleep, shower, bathe.  During the time I have the sound processor OFF, I am Deaf again. I still depend on a dawn simulator lamp with a timer to wake me up, or when I am traveling, I take a portable battery powered alarm clock that I clip to my nightshirt and vibrates to wake me up.

The HUGE difference between a cochlear implant and a hearing aid, is that a hearing aid makes sounds LOUDER, while a cochlear implant bypasses the damaged nerves and sends electronic impulses to the cochlea, which in turn sends a message to the brain, which perceives it as "sound."

I think this is why I have the sensation at times that I am hearing "sound" through a tunnel or that sounds are echoing, or that people are talking as if underwater.

Deaf people are extremely visual. When I saw my friend's cats open their mouths and HEARD the sounds, "Maaaaah," and "Meeeee," I knew that the sound was the cat's meow. THAT's how I was able to identify the sound.  If I don't know the sound that I am "hearing," I am intelligent enough to ask a hearing person, "What is that sound"?

I don't think Hearing people give Deaf people enough credit. When I heard the ticking of the regulator clock for the first time, I immediately stopped what I was doing and focused on the ticking sound. I noticed the ticking sound was coming from my left. I thought what is in this room that would tick? Then I saw my German regulator clock with the weight sitting on my desk, and had an "Aha" moment. I then recognized the ticking sound coming from my clock.

Getting used to a cochlear implant is a PROCESS.  It is not instantaneous hearing at all. I still have to figure out what the sound is. Because I WASN'T always profoundly deaf, I was able to recognize the sound of wheels rolling on a grocery cart, and avoid a grocery cart collision.

Each new sound will become familiar to me over time. I will "bank" that memory of that particular sound into my hearing memory, so when I hear that sound again, I will know what it is. Hearing and understanding spoken speech without lipreading is still a challenge. I have only had the cochlear implant turned on for four days. This is still a process, and one that is going to take a while.  While some sounds are surprising and unfamiliar to me, and even sounds noisy, I was very prepared to take this hearing journey. I have absolutely nothing to lose, and everything to gain.

Everything has a sound

EVERYTHING has a sound. Friday, November 12th, my two sisters and I returned to my CI Audiologist for more "tweaking." She hooked my sound processor up to the computer. I was told again to listen for beeps, tones and to tell her what was the most tolerable. Everybody's voices still sounded a bit like that person was talking underwater, but the clarity of sound was much better. I still cannot understand speech without lip reading. I recognize music when it is being played but don't yet recognize the song or the artist. I now hear distinct sounds like the elevator doors opening and closing.

None of the sounds are loud, overwhelming or anything like that.  Everything is NOISY. I don't have to strain to hear anything. The cochlear implant and sound processor are doing what they are supposed to do.  I do have to listen and figure out what I am "hearing."  My friend came to take me home. She met me at a Ruby Tuesday's restaurant near the airport. My sisters and my friend and I all said our good-byes. My friend and I stopped by her apartment. We went inside. I heard my friend's cats meow for the first time with the implant and recognized it for what it was. The 16 year old cat's meow is "Mah," at a higher frequency. The six month old kitten's meow is "Meee," also at a higher frequency. I couldn't hear the kitten purr, but I could feel it. My friend said he was purring quite loudly.

We stopped at a take-out restaurant and picked up items to take home for dinner. The television was on and NBC news was on.  I was able to understand Brian Williams, the news anchor, for the first time with the implant and without the aid of captioning.  As my friend drove, I was able to identify the sound of vehicles passing in the night. For the first time that my friend and I could ever remember, I was able to carry on a conversation at night in the car with her, sitting beside my friend. The lights from the control panel of the car illuminated her face just enough that I was able to lipread her and respond to the conversation appropriately.

When we reached my home, we had dinner and talked some more. I was tired by the time my friend and I decided to say good night and go to sleep. I wasn't exhausted, but I was tired from Day Two of post-activation.

My friend and I got up this morning, Day Three of activation. She had already made up the sofa bed downstairs and was in the shower in the basement by the time I came downstairs to the kitchen to fix breakfast. I thanked her for everything. She hugged me back and left to go to her son's apartment.

I can hear myself chew food. I can hear the keys of the computer keyboard clicking as I type this blog. I hear my regulator clock ticking. I drove my car for the first time in four weeks. I could hear the car automatically shift gears. I could hear the door locks unlocking and lock when I used my remote key control.  I went to a small grocery store to pick up a few items. I could hear the wheels of the grocery carts on the floor.  No more grocery cart collisions!  I could hear people come up behind me and move around.  I could hear the cashier scan individual items and hear "beeps" everytime an item got scanned.

I experienced no vertigo or dizziness on the interstate last night, nor did I have any sense of imbalance. I can hear leaves crunching under my feet as I walk. I am more steady on my feet now than I can ever remember.

Everything has a sound. My world is now "noisy," post implant.  Hearing is such a gift to me. I feel like it is my birthday, Thanksgiving, Christmas, Easter and New Year's rolled into one.  Each sound also has a "flavor," and as I process each new sound or recognize sounds from long ago, like the cat's meow, I bank it away into my hearing memory.

Activation Day

My sisters and I met with the CI Audiologist at 9:00 AM this morning.  I was fitted with the sound processor, and hooked up to the computer.  I first felt pulsing and then I heard the pulsing. It reminded me of something out of Star Trek and I said, "Beam me up, Scotty"!  My older sister turned to my younger sister and said our sister hears for the first time using a cochlear implant, and the most profound thing she says is "Beam me up, Scotty"!  I was just sitting there rather amazed at the technology.  It is NOT instantaneous hearing as in a hearing aid where one is fitted with a hearing aid and "ta-da"! You can "hear."

"Hearing" with a cochlear implant is very different. I am literally learning to hear all over again.  The CI Audiologist explained to me that I would hear a series of "beeps." She wanted to tell me what was tolerable.  We did that.  Then she said I am going to talk.  Well, when she mapped the sound processor for "speech," and started talking, her voice sounded like she was talking underwater.

The cochlear implant and sound processor are functioning as they should.  Everything is noisy but sounds like echoing to me.  I can hear car tires going "ta-click" over the roads, but the sound of cars going by almost sounds like a tunnel-like roaring. The sounds are not painful or overwhelming. It is just extremely different from what I am used to "hearing." My sisters and I went out to a Brazilian Steakhouse for dinner to celebrate Activation Day. I could understand the waiter, who helped with the menu choices.  The restaurant was noisy. 

The sounds are wild and crazy sounds to me, alright.  It is definitely taking time to get used to.  My younger sister brought some DVDs that her children had made movies for school projects, and I recognized the sound of music but not the lyrics or the song.

My younger sister had a very good description of the process: She said you know how a computer does pinging (which I cannot hear) to find a wireless network. I said yeah. She said, that is sort of what your brain is doing with a cochlear implant. I thought that was a very accurate description of what I am processing. I can have conversations with my sisters even though their speech sounds like echoing.  It is probably part lipreading and part hearing what passes for speech.

Activation Day is definitely a sensory experience.  It is a really strange sensory experience, but the process of hearing with a cochlear implant is going to take time. Tomorrow we meet with the CI Audiologist again for more "tweaking."

Yesterday was four weeks post surgery. The dizziness, unsteadiness, balance issues are nearly gone. I get dizzy only when suddenly turning my head, putting my head down, any sudden movements, and I'm a little off. The tinnitus in my ears are still with me. Sometimes it is like white noise, other times a little louder.

Thursday is Activation Day. I have a 9:00 AM appointment with the CI Audiologist.  My sisters will be with me. I have absolutely no idea what to expect, or even what I will hear, if anything. I hope that the cochlear implant works 100% and that all channels are a go. 

A friend is driving me to the hotel tonight, and my sisters are flying into the airport tonight and will meet me at the hotel. We will go to the hospital's outpatient clinic bright and early Thursday morning. The rest of the day I will be getting used to whatever sounds I am "hearing."

Friday I have another appointment with the CI Audiologist for more "tweaking." After Friday's appointment, my sisters will return home (my nieces and nephews are all in school) and a friend will drive me home. I wonder what traffic noises will sound like on the interstate as we are driving home?

Think of the sound processor component of a CI as a super sophisicated stereo receiver. You have your treble, bass, reverb, "woofers" etc. The CI Audiologist "maps" each channel of the sound processor according to what I can tolerate. That is what the Friday appointment is for - she will "tweak" the sound processor.  It might be a little too much bass, not enough treble, a little too soft, muffled.

I have been told by my online CI veterans to prepare for a wild and crazy week of learning to hear with the CI. I kind of feel like I am at the beginning of a new roller coaster ride: you are sitting there, strapped in, holding on to the stabilizer bar, feeling the car go up and up and up and up. You get to the very top and you aren't sure what the ride is going to feel like.

Well, here goes. There's no turning back now! 

Some Progress

I think the Woozies are finally starting to go away. The only way I can describe this feeling is this. If you have ever drank an alcoholic beverage on a totally empty stomach and experienced a buzz, felt a little unsteady on your feet, that is sort of what the Woozies have felt like for three weeks. Granted, the "Woozies" didn't officially start until October 15th (that was my worst day), the feeling of being unsteady on your feet just makes me more cautious.

I now have three weeks worth of growth above my left ear, AND (Drumroll) the stitches have finally dissolved!  I have managed to get something accomplished while recuperating from surgery, and that was to do about three weeks worth of laundry. I stripped my bed and put on warmer sheets and my electric blanket last week. I still have a cold intolerance problem. I do not think it is the anesthesia at this point. Even before the cochlear implantation surgery, I have always hated being cold. It has been a chilly, wet, raw, rainy day and the temperatures didn't rise much above 52 degrees all day. I only went outside once, and that was to retrieve my mail. I figured out where the implant is located on my head. There IS a slight "bump," a lot like a bruise type bump, but a really teensy one. That doesn't bother me in the least.  You cannot see the healing incision, at least I can't see it. When a friend came over Monday night, she said the incision is behind my left ear, kind of like a slant type incision.  

Activation Day isn't that far away. I am getting curious as to what I will "hear" once the implant is turned on.  The tinnitus is also quieting down.  That is really interesting because pre-surgery, the tinnitus was really bad and in my opinion, worse. Roaring, hissing, hooting noises. Now the tinnitus is to me, like white noise. As I am not hearing anything in my left ear post-surgery, my right ear, which I still wear a hearing aid in that particular ear, has "taken over" for my left ear. I wonder if the cochlear implant, once activated, will do the same thing for both my ears?

Too Ambitious

So much for doing light housework and laundry. I keep getting sidetracked. I'd do a little bit here and a little bit there, but I didn't get as much accomplished as I meant to or wanted to. I did take another shower and washed my greasy hair. Since I have an oily scalp, washing my hair every three days is a necessity.

I have made some new on-line friends who have undergone CI surgery. I did get some questions answered.  I discovered that the cold intolerance was pretty common in people after they have been through surgery and anesthesia.  The cold intolerance happened DAYS after the surgery. That figures. I tend to have a delayed reaction to everything, INCLUDING experiencing what I call the "Woozies." The Woozies are not totally gone, and may not fully go away until Activation Day. Oh, Joy. I was also advised NOT to drive to my appointment on Activation Day, to have someone else drive. The sounds of traffic may sound different than what I am used to, that's why.

I could not tell after my shower whether the stitches dissolved or not. I am still cleaning the incision area where my left ear was implanted.  Well, a friend is coming over this Sunday, I will have her peek at the incision site and see what she says. I still have brusing around my left eye but it is fading. Right now it looks blue/green/yellow. 

I tried the on-line grocery delivery service last Friday. They were prompt, efficient and I still have not gone through last week's groceries yet.  It may be another week before I order groceries to be delivered. Still no cabin fever.  I come outside to get my mail and to leave out the trash bags for pick-up. So far, so good. 

Two weeks Post Surgery

Well, it has been two weeks post-surgery as of today. The "Woozies," I think, are 99.9% gone. It is funny, my head feels like there is an "aura" around my brain that can't quite decide if I am on firm ground or not.  My left ear is healing nicely.

I am still sleeping on my back, against several foam pillows and on a slight incline in the bed. I have two weeks of hair growth in the area that was prepped for surgery.  The stitches have not yet dissolved.  Maybe the stitches will dissolve by the fourth week. I am still wearing my hair pinned up by hair jaw clips and away from my implanted left ear.

I spent a restless night last night, and I am not sure why. I couldn't find a comfortable position in the bed and I still hate sleeping on my back. I am definitely a side sleeper.

I think I will tackle some light housework tomorrow, do some laundry, see how that goes.

A Sunny Sunday

The "Woozies" are still with me. The dizziness is not as severe as it was on October 15th post-surgery. I feel steadier on my feet as each day progresses. Next week I am going to try to tackle laundry and light housekeeping around the house. I am still cleaning my surgically implanted ear. The stitches have not dissolved yet.  I have two weeks' growth of hair where my hair was shaved off prior to surgery.

I no longer hear anything out of my left ear. I see why some people refer to a non-functioning ear as their "dead ear." Right now that is exactly what my left ear feels like. That's okay. I am neither upset nor frightened by this. I know that ear is still healing post-surgery. My right ear, which is technically my "better ear," has taken over. I still wear a behind the ear hearing aid in that ear. I am relying on my right ear for "hearing," until Activation Day which will be sometime next month.

I now see the wisdom of having one ear implanted at a time. I can't imagine how much worse the "Woozies," would have been if I had gone through binaural implantation.

I am neither anxious nor impatient about Activation Day. I am in a patient, waiting state of mind.

Slow but Steady

The "Woozies" seem to be slowly diminishing. The dizziness is a bit different than prior episodes I ever had pre-surgery, or at any other time. The dizziness isn't the over the head slow spinning type variety.  It is more of a side by side, up and down type dizziness. That's the difference.

My biggest fear pre-surgery, was that the wooziness, dizziness, vertigo would be so debilitating that I couldn't function, that I would have to be helped out of bed, assisted in using the toilet, getting dressed, etc.

Nope. None of that. It really wasn't anything that I couldn't handle. Staying on the first floor of my home lasted a day post-surgery. I was pretty much able to use the stairs and go upstairs and downstairs.  I didn't venture downstairs to the basement until last Friday, when I took my first shower post-surgery. No signs of infection or middle ear infection, and my ear seems to be healing quite nicely.

I will take another shower shortly, a good one, this time. My hair is so greasy, it feels like I coated it in oil or something. The tinnitus comes and goes. I am still not doing a whole lot of cooking. I am still using paper and plastic products, mainly so that I don't have heavy bags of trash.  I have been drinking a lot of herbal tea. One particular favorite is a tea from South Africa - Red Roobios Tea. It is very different and has a distinct flavor to it.  I am trying to eat and drink things with antioxidants in it. This tea is one of them. Stir in a teaspoon of raw organic honey, and you have yourself a delicious, comforting cup of hot tea.

I bought a lot of groceries pre-surgery and the only thing I'm lacking right now is stuff you get every week, like milk. I am going to use an on-line grocery delivery service, especially since I cannot drive.  Thank God for the Internet and credit cards, both of which have come in handy!

I don't even have cabin fever.  I have not been outside at all except to go to the mailbox and retrieve my mail. I can see why my new friends in the cochlear implant community have counseled me to be patient.

I did not anticipate having the "woozies," for nearly a week. I figured I would have the woozies for the first 48 hours and then the rest would be a slam dunk.  Ah, not quite.  Everyone who goes through cochlear implantation surgery has a unique experience.  While some of the symptoms post-surgery may be universal, you cannot predict the outcome for each and every person.  I still have some bruising beside my left eye, but it is healing nicely. No complaints. I am very grateful that things have gone as well as they have, I really am. Shower time!

The Woozies - one week post surgery

Today it has been one week post surgery. How time flies.  My biggest challenges are what a friend appropriately calls "The Woozies."  That pretty much describes my post surgery state at the moment.  I am still struggling with a sense of imbalance and wooziness. That, and ringing in the ears - mostly my left ear.

This started Friday, October 15th and hasn't stopped.  It is getting better, but I still feel pretty unsteady on my feet. I guess my brain and surgically implanted left ear are still trying to figure out what is firm ground.

No signs of infection, or middle ear infection, fever, anything like that.  I am keeping my fingers crossed.

I even have a week's growth of hair where the left side of my head was shaved above my left ear.  The surgeon must have done the prepping AFTER I was under anesthesia.  Smart move.

The cold intolerance lasted a day.  I still haven't figured out why I was so cold when it was 73 degrees outside. I'll take 100 degrees in the shade to feeling cold anytime.

I had a nice surprise this afternoon. A college friend of my mother's, had a florist deliver a beautiful pot of miniature yellow roses in a bright yellow ceramic pot with a smile face on it. I will have to take a picture of it!

I am slowly getting my energy back.  I should be finished with antibiotics by Thursday. I no longer need to take a nap during the day.

I am glad I decided to go with paper goods, plastic ware and a lot of microwaving. I made myself an egg omelet this morning with a little cheese and some bean, corn salsa. Just a little. It was pretty good, and the omelet didn't fall apart. The trick to that is low heat, all the way through. I need to tidy up the kitchen a little.

Intolerance to cold

Well, I am still having issues with wooziness, some vertigo, and definitely imbalance issues.  The tinnitus comes and goes. My brain and left ear are still trying to decide what is terra firma. My left ear incision is beginning to itch. A little sore. My hair is still a disaster.

For some strange reason, I have not been able to get warm. It is 73 degrees outside and even though the air conditioning was turned off a long time ago, I still can't get warm. I have been doing the soup thing, the coffee thing, and the tea thing.

At least my nose and hands no longer feel like ice cubes lke they did this morning. The heat pump is on, but because the weather has been mild, it hasn't cut on.

I wonder how long it will take before my brain and ear decides I'm on firm footing?!

I am slowly feeling better, day by day. I'll just take things one day at a time.

A bit of a setback

Yesterday was challenging.  For the first time post-surgery, I woke up with a real sense of feeling imbalanced and very off kilter.  I also had not taken a shower, removed the protective cap or cleaned my ear. After taking my medicine and eating breakfast, I went back to bed to sleep it off. I took two naps yesterday.I removed the protective covering, cleaned my ear. I just had to do everything with caution, methodically, slowly, and without making any sudden moves.

The left side of my head looks like an incomplete buzz cut, like somebody shaved a good four to six inches above my ear.  I may have to go with a punk rock do or a pixie type style when I do visit my hairdresser next month, depending on how much of my hair grows back. I commented on the incomplete buzz cut to an adventuresome friend of mine.  She said I should go ahead and do an incomplete buzz cut to the OTHER side of my head, and remarked that I would be "trendsetting," which made me laugh.

My left earlobe is encased in a violet- colored purple bruise. I have tiny bruising around my left eye.  The rest of my hair is pinned up in one of those hair jaw clips and away from my left ear.

Cleaning my ear was also a challenge. The shower helped loosen the caked dried blood inside my ear and I have clean hair for the first time in five days. I have had to fight temptation to blow my nose.  I have to wipe my nose because the doctors don't want a middle ear infection or anything else. No more protective cap or dressings. Just anti-bacterial ointment.  I have to clean the incision site twice a day. I feel bare and vulnerable without that protective cap. 

What works is mixing 1/2 sodium chloride and 1/2 hydrogen peroxide, pouring it in this plastic bottle, then holding a small basin (your hospital puke bowl) underneath the earlobe. I then carefully pour the solution behind the ear, the solution drains into the basin. I pour the basin contents into the sink. I then pat the incision area dry with a sterile pad.  Next, I take one of those long sterile cotton swab applicators and apply the ointment.

I am slowly getting back energy.  The biggest issues I have right now are wooziness, imbalance, and ringing in the ears.  The balance issues are a lot better than they were yesterday.

I am glad I have been eating high fiber foods.  The high fiber finally worked and I was finally able to go to the bathroom and not just pass gas.  The back ache is also gone. I must have been somewhat constipated.

I am on antibiotics. I asked everyone not to visit until after I finish antibiotics.  That should be mid-week next week.

I can fully yawn without my jaw hurting.  I still have to sleep as if on an incline for two weeks.  No heavy lifting for two weeks.

It is now four days post surgery. So far, so good.

My Surgery Experience, October 12, 2010

My younger sister and I reported to the hospital at 10:00 AM yesterday. I was pretty calm.  My sister kept asking me if I was okay, and each time I reassured her I was.  We went through the preoperative administrative procedures.
 My sister told me that I would be in the preoperating room by myself for about 30-40 minutes.  She griped that the Momma in her didn't want me being in there by myself.  I chuckled.  A nurse named Loretta came and got me. I followed her instructions and got undressed and gowned.  I took off my glasses and hearing aids.  Loretta gave me a shot of buffered Lidocaine in my left hand before inserting the IV in my left hand.  It was pretty painless.  After the prepping, they brought my younger sister in and we went through the preoperative medical questions. I met the medical team - two of the doctors I had met before, a man and a woman.  My anesthesiologist was also a woman,  a delightful, very capable doctor. She explained the anesthesia to my younger sister and me.

I signed all the necessary forms, and my younger sister, who has durable power of attorney, did so as well.  Just before I left for the operating room, I gave my sister a big hug, and said, "See you later, kiddo!"

I was escorted into the operating room suite, IV bag and all, which is kept at a chilly 65 degrees and it was very brightly lit.  I was helped onto the operating room table, tucked in, and the anesthesiologist started administrating the mask. Within seconds I felt as if I was drunk.  My surgeon came in, unmasked, smiled, stroked my forehead, and said,"Hello." I replied, "Hello, I feel drunk." He smiled again, said, "That's good, have a nice nap."  The anesthesiologist readministered the mask, and I closed my eyes. As I dritfted off, I thought of a fairy godmother waving a magic wand of fairy dust, lulling me into delicious, blissful, uninterrupted sleep. I remember absolutely nothing from the actual surgery.The next thing I knew, nurses were shaking me awake, and I really hated to wake up, but I did.
I had no nausea or vomiting from the surgery, nor did I experience any afterwards. I spent a long time in recovery because the medical team wanted my oxygen saturation levels above 70.  I coughed up some mucus, and kept clearing my throat to clear my lungs. I was placed on oxygen, given a nebulizer treatment. They brought my younger sister in. She was glad to see me doing well. I did have some oozing and bleeding post surgery, but that was to be expected. I was really glad to see my surgically implanted ear completely covered by gauze, and a hard plastic contraption that looks like a cup bandaged to my head.  I typically sleep on my left side, with my left hand covering my left side of my face.  

I got dressed, and was wheeled upstairs.  As the elevator doors opened, I saw my surgeon who waved at me, I waved back and he gave me a thumbs up gesture.  I said thank you and waved back.

My sister met me with her car and helped me get in.  I was a little woozy, had very mild vertigo. We went back to the hotel.  I slept a lot, on my back, propped up by lots of foam pillows, and drank some cold water.  Later, we decided to order room service because I was hungry.  We had this delicious seafood soup in a sourdough bowl, some cocktail shrimp. My younger sister also had the seafood soup, and some seafood pasta, which I sampled.  My biggest indulgence was this delicious, decadent Italian Cannoli which I shared with my sister.

I felt a lot more human after eating, in spite of a sore jaw, some pain on eating, and yes, I kept everything down.  My surgically implanted ear felt no worse than a bad toothache.  I took one pain tablet and pretty much slept through until around two in the morning.  I had to pee and I was thirsty. After using the bathroom, I got a cold water bottle out of the minibar refrigerator, took some sips, drank about half, and then went back to bed.

This morning my sister and I got up, got dressed, checked out of the hotel, had breakfast. We stopped by a Starbucks and I got my beloved venti skim latte drink to go in the car. My sister drove me home. She still wasn't too happy about going home and leaving me by myself, until she saw I had prepared the sofa bed, made it up, put paper plates, plasticware out, cups, soup, drinks, out on the kitchen counter and I said I would stay on the first floor of my townhouse and not go up stairs.

She texted me earlier this evening after getting home.  I took another nap, ate some soup, and had some iced tea. I get to take a shower tomorrow and clean my ear. I will see how much hair is cut away from my surgically implanted ear and it will feel good to be clean again!

I am blessed in that I have had little side effects from the surgery so far. It went smoother than I thought it would!

The Night before surgery

Well, after noon tomorrow I will be recuperating from the cochlear implant surgery. I have no idea how I will do. It may be a few days before I blog again. My younger sister is with me and she is supervising homework via cell phone!

So I think I will have some water before midnight.  After midnight I cannot drink or eat anything else.

I am totally calm. No jitters, nothing.  I am feeling pretty fearless.

A Poem two days before surgery - a priceless gift

Today I went out for lunch with two girlfriends - we had so much to talk about and too little time. We had a wonderful visit and the three of us could gab for hours. We reluctantly said our good-byes. I promised to contact them as soon as I felt better after surgery. 

I went home, got my mail. As I was going through it, there was a small manila envelope, without a return address on it.  I didn't recognize the handwriting right away, so at first I didn't realize who sent the envelope.  I opened it, to find a poem with a note. This was written by a much beloved aunt, my mother's sister.  My aunt had written the poem when I was five.  I read the poem, and cried and cried.  I still can't read it without crying.  I was so moved by the poem and her depth of love for me at that age.  She wasn't even a mother at that time.  This is such a priceless gift. I will keep it forever.

The Poem is titled, " Mindy's World."

                                                                MINDY'S WORLD

Mindy laughed when she was two the way other children
do,
But she did not speak and never sang

Or seemed to know when doorbells rang

For sound was not a part of Mindy's world.

Oh, there were times her rage unfurled in torment from her
restive world,

But  angel-like, she would relent,

Tears exhausted, fury spent -

How game her fight to vault her shadow world!


But day by day, she muddled through and changed her
silent world which grew

In leaps and bounds, it seemed, (although
Miracles take time you know)

But words became a part of Mindy's world.

And now that she has found her wings, she speaks to us of
many things.

Her words are few, perhaps but proud!  A simple thing - to
speak aloud -

But that is what is new in Mindy's world.


There's a song. "Wind Beneath My Wings."  I first saw and heard it about 15 years ago - I was watching a music video on television of Bernadette Peters singing this song, and it touched my spirit.  That was the song that immediately came to mind when I read my Aunt's poem through my tears.

Post Implant, I would love to learn to sing. I'm not asking to become an opera singer.  I would like to learn to sing so that I can carry a tune and sing a song.  That may or may not be possible, but I would like to try.

I know there are hearing people who are tune deaf and cannot sing.  I would like to learn to read music, and to learn to play the piano, among other things. 

I know on an intellectual level, a cochlear implant isn't a miracle and doesn't cure deafness. But, Oh, Lord, the possibilities!  Just thinking of the marvelous technology that a cochlear implant  may do for me is just astounding!!

If spoken speech broadened the world of my then five year old world, just imagine what a cochlear implant is going to do for a middle aged woman?

What will I hear on Activation Day? in a week?  in a month? in a year?


                                                              

A Birthday, Windchimes and Hearing Dreams

It has been awhile since my last posting.  In eleven days I will have my cochlear implant surgery, and I have been insanely busy trying to wrap things up at work, home.  There are still errands to run.  I recently ran an errand at a local Barnes and Noble store, and my Member Card was no longer being used, even though I had an active membership. I needed the new Member card.

I couldn't hear or understand the store clerk verifying my information, and as soon as I opened my mouth, he figured out I had difficulty hearing. He didn't raise his voice.  He did the next worst thing: grimaced and exaggerated his speech. That's a huge no-no in my book. Don't exaggerate your speech. Don't cover your mouth, don't mumble. If hearing people would remember to do these three things, I'd be fine.

Well, we got through that verbal exchange, and I had to remind myself, well, at least I didn't have to write him a message on paper and pen, or have a hearing person translate spoken speech into ASL for me.

So, when I am activated post-implant, will everybody's voices sound like they are talking underwater, robotic, sound like chipmunks, or have soprano voices?  Well, there's only one way to find out!

I had a birthday last month.  My older sister and her son mailed me a rather unusual present: Wind chimes.  I would have never even thought of such a birthday gift, and I'm glad that my sister was creative enough to think of it.  They wrote me a note saying they were sorry I couldn't hear the wind chimes just yet, but after Activation Day they hoped I would hear the wind chimes.

I have been having, of late, what I call "Hearing Dreams." The Hearing Dreams have been occurring for quite some time - months.  It is amazing what you dream about "hearing."

The gift of the wind chimes brought back more "hearing" memories in recent dreams:  Listening to a Calliope playing on a steamboat while cruising downriver; hearing Cathedral bells ringing; falling asleep on the train, the chugging of the locomotive wheels as my lullaby; hearing a bell choir at church during college days. Listening to music boxes tinkling an individual melody.  Hearing organ pipes playing, and feeling the vibration of the church organ through the wooden floor at my feet. Attending a orchestra symphony with my father, listening to the various instruments.; listening to an electric flute being played at a rock concert, the memory of muffled drums and Taps being played at my father's funeral during a hot, spring day, so long ago. Listening to a Muslim cleric call the faithful to prayer during a visit to the Muslim Quarter in Israel on a visit with my at mother and our church, some fifteen years ago.

My "hearing dreams" don't really have a plot.  It is more of a Kaleidoscopic variety - the dream version of a slide show with sound, and quite vivid. That's the only way I can explain it. Sometimes I hate waking up to reality, I'd like to dream some more "hearing dreams."

I wonder how long it will take after activation, to coherently "hear" spoken speech on the radio, recognize lyrics on CD's?  With the leaves beginning to fall, what will rustling leaves sound like?  Will I hear wind blowing? What will raindrops on my roof sound like?

Life's Reflections and then some

I wasn't your diligent, studious, high achieving deaf kid.  As soon as I could talk, even at deaf school, I was mouthy.  I once threatened to give a teacher a black eye, so as the legend goes.  I'm sure some stories have gotten embellished with time.  I always had to have one last word with my parents, and my mother often washed my mouth out with soap.  Then it was, "Just wait until your father comes home."...!  I didn't even make the Honor Roll until my senior year of high school. I didn't "blossom academically" until college.

I definitely was a late bloomer. I was never one of those kids who had a definite picture of who she wanted to be "when I grow up."  I STILL don't know what I want to do when "I grow up"!  I am still evolving as a person.  One of the best life lessons I ever learned was taking what was then called Distributive Education in High School. My parents honestly didn't know if I would end up learning a trade or go to college.  My parents at the time thought working in a gift shop wrapping gifts in a local mall was too dangerous a job for a high school student, so I wound up working in a cafeteria - behind the scenes. That really was hard physical labor, and I hadn't thought about college.  My parents weren't sure that I HAD the grades to get in, and like many deaf kids, I wasn't the best test taker when it came to standardized tests.  Well, I had the cafeteria job from high school until the spring semester of graduate school, so I had the chance to observe the lives of my fellow blue-collar workers. Many of them took me under their wing and gave me some practical advice about life- advice I still follow to this day.

I'd rather be tired from physical labor, because you can go to bed with sore aching muscles and sleep it off.  Mental fatigue, I think, is worse. There have been many times I have suddenly jolted awake at 2:30 AM remembering some deadline that had to be met in the office the next day, only to struggle to go back into deep sleep. Just when I have fallen asleep, it is time to start another day.  I used to complain to my father that I couldn't clear the clutter from my brain enough to stop thinking and go to sleep! 

What a challenge to raise a deaf kid.  Not only do you have to break the barrier of silence and establish communication through language, but then there are the challenges of explaining the concepts behind life's lessons.  I can remember coming home one day and being frustrated when a friend of mine (unfairly, I thought) got put on restriction for something I felt didn't deserve such a punishment. I protested to my parents that my friend's parents were too strict.  I couldn't understand why my parents would not intervene.  I didn't understand the concept behind respecting a person as a parent.  

Then there is civility.  A hearing child is taught manners, how to respect someone in authority (starting with obeying a teacher's instructions to open your textbook), to obeying your supervisor's instructions on doing a task (even if you think he or she is wrong). Try doing THAT with a deaf child.  My mother had the unique advantage of being a teacher of the deaf AND the mother of a deaf daughter.  She walked the walk and talked the talk. I can remember her staying up late, past 11 at night, talking on the phone to a frustrated parent, or a frustrated teacher, on more than one occasion.

One of the documents I came across, while gathering documentation in the evaluation process for cochlear implant candidacy,  was an assessment done by an audiologist. 

This audiologist first diagnosed me as being deaf: Some of his remarks:  "...presses ear to the television to hear."...imitates dog barking when she hears a dog bark. Responds to loud clapping.  I was two and a half years old.  How in the hell did I have the intelligence, let alone the presence of mind, to do something like "press my ear to the television to hear..."! 

That leads me to think that I definitely WASN'T born deaf.  My mother often talked about how confused she and my father were as parents, because I was babbling like all babies do at that age, so how could I be deaf? 

Then there was my mother's reaction.  When the audiologist told my mother that I was deaf, she asked the audiologist, "Is that all? Is she retarded, too"? This was before the term "mentally challenged."  The audiologist said to my mother, there is nothing wrong with your daughter's mind, she just can't hear.  My mother later explained she'd already been told all sorts of horror stories about what was wrong with me, including being told that I should be institutionalized. 

Now babies and kids today who are diagnosed as deaf, have a lot more technology at their disposal. I have always been a curious person, and never rejected technological advances. The computer, along with the internet opened up a whole new world for deaf people.  Who invented the cochlear implant?  I'm glad the cochlear implant was invented, and I took forward to experiencing "sound flavorings anew" again. They say the brain never forgets to "hear."  What sounds will my brain recall during the first week post-implant?

Do Deaf people get lonely?

My older sister and I were just catching up in an e-mail on the daily happenings in our lives.  My older sister is a single mom.  I am single, never married, and don't have any children.  We have had family relatives on both sides of the family tree that never married.  I may be one of them, then again, one never knows. 

She asked me if I got lonely. I said truthfully, oh, sure.  I have been lonely, but being deaf and growing up in a hearing family, people were not always friendly toward me because I was different.  That's true of anyone with a disability, deaf or not. Deafness can be isolating.  I am not a loner, but there are days when I prefer solitude because I've had a hectic, crazy week. I'm really good at entertaining myself. 

I have the soul of a couch potato and would like nothing better to sit and read a good book all day. That isn't realistic, because I have to work for a living.  It is also deadly for you to sit still.

People sometimes have unrealistic expectations of what "happiness" is.  For me, I had to LEARN to be alone and not fear it. There are people out there that are truly afraid to be alone, and are always searching for someone or something to fill the void.  They are the ones who are the workaholics, the ones with multiple marriages, the Type A personalities who are constantly filling their calendar with extracurricular activities, whether it is travel, a cooking club, going to a gym to exercise, going to football, baseball, hockey games, volunteer work, anything to avoid being ALONE. 

You have to like yourself, feel comfortable in your own skin, be happy with yourself, before you can truly expect to make someone else happy. I truly believe that. Several people have told me, both hearing and deaf, that the worst loneliness they ever experienced was being trapped in an unhappy marriage. That revelation has always stuck with me.  Marriage doesn't always make one happy.  I have friends and relatives who have been happily married for years. I am fortunate to have friendships that have stood the test of time. These are the friends that truly stick by you through thick and thin.

I feel sorry for those people who are addicted to things like plastic surgery, luxury homes, luxury cars, money, love, and material possessions.  When my sisters and I buried our mother nearly five years ago, I remember being thunderstruck by the thought, as we stood by the open grave of our parents, how you come into this world with nothing, and you leave this world with nothing.

Material things are nice. Don't get me wrong, I enjoy nice things as much as the next person. I'll admit to being addicted to Starbucks coffee.  It is so bad, the barista has my Venti Skim Latte ready for me as soon as I approach the cash register with the exact change!! Those dear folks know me by my drink!

The state of being lonely doesn't have to be permanent.  For me, it isn't.  Holidays can be awkward because I don't have a husband or children. The truth is, family is what you make it.
It can be spending the holidays with extended family, friends and neighbors. There are a lot of single people out there, and not necessarily by choice.  Some have been divorced, some are widowed. Some are single and have never been married. I can remember one Thanksgiving, my older sister and I volunteered to serve Thanksgiving at a church in the city to folks who didn't have anyone to spend Thanksgiving with. The Priest at that Catholic church, much to my amusement, kept pointing out single, eligible guys to my older sister and me. 

Post cochlear implant, post Activation Day, I definitely have plans.  I wouldn't mind doing volunteer work of some sort again. You meet such interesting people.  My mother, when she became widowed, her life didn't stop. It changed, and our mother adjusted.  She made sure that college students who didn't have family in the area, spent holidays with us. They were always grateful, and we got to befriend a person for a day.

I want to go to the zoo.  I want to hear the animals post-implant.  I'd like to find a bird sanctuary or an aviary somewhere if they exist nearby, so I can hear what bird calls are like.  It might be too cold to go to a beach.  Maybe.  We even spent Christmas week one year on the beach.  It was a mild winter, and while you had to wear a winter jacket while strolling on the beach, up at our rental house, you could sit out on the deck in your pj's or nightgown, with your cup of coffee, it was that warm. I have always loved the ocean.  I was first introduced to the ocean when I was eight, and I was surprised that the ocean tasted salty!

I think part of the reason I am such a regular at Starbucks, is because of the people who bring their dogs with them.  There are all kinds of different breeds, and the dogs all seem to know that I love animals. I don't own a cat because while they are low maintenance animals, I don't like cleaning out litter boxes.  A dog is out of the question at the moment because my work is so hectic and it can get insanely busy. I have friends who graciously share their dogs and cats with me, or rather, the animals decide to share their owners with me!

If you are true to yourself, are honest about who and what makes you the unique person you are, you can be a happy person.  If you were an unhappy person before becoming deaf, a cochlear implant isn't going to solve your unhappiness. Change what you don't like about yourself, and THEN get a cochlear implant, if that's what is best for you.

I cannot believe it is mid-September already!

Bittersweet Memories

I was thinking about my first visit to the cochlear implant audiologist.  She showed me several implant sound processor models. I was looking at the headpiece part of the processor.  I was thinking that the diameter of the headpiece looked about the size of a nickel.  My father, years ago, when I was about maybe eight, told me that someday hearing aids would be the size of a dime.  He wasn't that far off the mark - as far as components of a cochlear implant sound processor are concerned.

I thought of lazy summer evenings when my father and I would sit out on the deck of my parents' house in the country - listening to the frogs croaking.  I still couldn't hear birds.  My father would try to replicate the sounds of the birds so I could "hear" the bird calls.

The decision to undergo a cochlear implant as an adult has been a deeply personal one.  My father has been with the angels a long time now, and my mother joined my father nearly five years ago.  My mother knew I had to be the one to decide or reject having a cochlear implant done, and wisely knew I would be living with the consequences of that decision. Thankfully, cochlear implants and surgery have come a long way since the FDA first approved cochlear implants in the United States in 1985.

It has been a real emotional roller coaster, going through this process. I am all too aware that my parents are not here to witness this important event in my life. My two sisters will be with me on Activation Day. That will probably be sometime in November. My older sister remembers my deaf school days.  My younger sister wasn't even born yet.

I would hope that no family member of a deaf adult (let's say 24 and older) would use emotional blackmail to persuade that person to undergo a cochlear implant (such as, your mother and I may not live long, so please get this done before we die, speech). Don't do it. I know you are tempted, but don't do it.  The same goes for hearing spouses of deaf adults. You could break up your marriage that way. It isn't worth it.

I know every hearing person on this planet who is reading this blog thinks he or she is "doing the right thing" by wanting that deaf adult family member to get a cochlear implant and to "finally hear."  It STILL TOTALLY  has to be the deaf person's decision.

There is scientific evidence showing that the area of the brain dealing with decision making, is not fully mature until about age 24.  I know there are exceptions. We all know someone who was born going on 40 and is mature way beyond his or her tender years.

I am a person who has worn hearing aids since age 2 1/2, and my hearing aids are the first thing I put on after taking a shower. I can't function very well in the Hearing World WITHOUT my hearing aids.

There are some deaf adults who, somewhere along the line, make a deliberate decision not to wear hearing aids anymore.  I am not one of those people.  I do have deaf friends who choose not to wear hearing aids, and who prefer to use ASL as their language instead of spoken English, even if they were initially taught to speak and lipread. That person may have been teased as a young child about how their voice sounded, what hearing people call "deaf speech."  I respect my deaf friends who have chosen to do that. That is their choice, and I am not about to get into an argument whether that choice to be deaf in every way is the right "choice." There are some deaf friends of mine who are oral deaf adults like myself who speak and lipread, but have decided that a cochlear implant "is not for them," or, "they are not interested."  I respect that, too. You don't know what life experiences that deaf adult may have had which influenced the decisions they made regarding deafness.

It took awhile before deciding I was psychologically ready to undergo a cochlear implant.  This was not a decision that was made within 24 hours.  I did research.  I put money away in savings, I saved up leave. I kept researching health insurance plans, asking if they covered cochlear implant surgery, cochlear implants, and how much did that insurance plan cover?  I prayed a lot.  As a Christian, I am just humbled by how God is making this possible, and the timing of it all. I am totally at peace with my decision to undergo a cochlear implant.  I am ready, in every sense of the word.

I don't "fault" my parents for making the decision to send me to a private school for the deaf where I could learn to utilize hearing aids, learn lipreading, and speaking.  My family is entirely hearing.  My parents honestly did what they truly thought was the best decision for me.  I'm grateful they did.

There are those who think hearing aids are the cheaper option.  It is not.  My mother always called me her "million dollar baby," and my parents paid for the equivalent of two college educations. Going to a private school for the deaf was not cheap. It still isn't.  Hearing aids are expensive, along with earmolds, tubing, batteries and repairs. You still pay close to a million dollars by the time the deaf person leaves this earth.  Hearing aids were not covered by my parents' insurance plans when I was growing up.  My parents, and later, me, had to come up with the money to pay for the hearing aids.

The beauty of a cochlear implant and a sound processor is that you only need ONE. As I  have worn two hearing aids for the longest time, I wanted both ears implanted all at once.  That didn't go over well with the cochlear implant audiologist, who said insurance would not cover two implants at the same time.  If parents with a deaf baby are considering going with a cochlear implant, I'd fight tooth and nail for binaural implants.  Your child will be better off for it.

I would like to be implanted in my right ear eventually, but if you implant a deaf baby or child, that surgically implanted processor is a lifetime investment.  Sure, you can upgrade the sound processors as technology improves on the product. Some people choose to do that. I also know that I am not going to be able to "hear" with a cell phone using a cochlear implant overnight.  It took me six months to get totally comfortable with wearing digital behind the ear hearing aids.  I still wasn't 100% sure I liked them, even after six months. It took a while.  I know I will have to be patient, and I know I will go through some "growing pains" in using a cochlear implant.