Sunday, March 26, 2006

Sunday's Answered Prayer!

Hey you guys!
Thank you so much for your prayers! After church I hung out until I was nearly the last one left, then my kids and I went shopping for a birthday gift for Joe, then got lunch, then came home and it was already 3:00! And I crashed for a lovely hour-long nap.

Church was...great. I felt totally peaceful, and I think that was the message God had for me. I told David and John, "I really want to get to church on time, but I also really want you with me. I don't want to wait for you and be late, but I also don't want to leave you behind. So, don't please don't push me this morning!" Well, I'm happy to report all three of us got there, less than 10 minutes late.

The first part of the service is the singing, which was my greater concern, anyway. I got there in time for the last half of the last beginning song. It was not too loud. Very good sign. I always sit in the third row, partly so I can hear, and partly just because I am an incredible creature of habit! :)

I tried to relax into the sound--not tune out, but not strain to hear. It worked really well. I could follow the Scripture readings because they are all printed out in the bulletin. I followed enough of Jays sermon to enjoy and not feel so frustrated. During "The Prayers of the People," William beckoned me and the Mulders to come forward and give our praise! So I could say I'm grateful for how well I came through the surgery, that I got activated already, that's a long road to adjust to the electronic stimulation but, yes! I'm hearing! I probably said more than he intended me to say, BUT that got me off the hook of people coming up and asking me, "So, can you hear now?!?!"

I had even printed up a little blurb and got it to fit on a 4x6 portion of an 8.5x11 paper, explaining that no, I do NOT hear perfectly now, and made a bunch of copies. I didn't need to use it once. I guess that shows I was afraid of other people's expectations, as so many people know so little about CI's. But I got LOTS of hugs afterwards and people are just so excited for me.

I'd say the things that were "best" about the service were
1. I had an incredible sense of peace and quiet enjoyment
2. I didn't have to be constantly switching back and forth on my HA remote between enough power to hear an individual speaker and little enough power to be able to even stand the singing.

The singing always gave me a headache unless I put my HA's on audio-zoom to "cut out background" to keep the sound from just being very loud buzzy mush. But then I couldn't hear if the pastor said something between songs. So I was constantly switching back and forth between my programs, constantly on the alert the whole service.

It felt SO GOOD to just relax! During the fellowship time afterwards, I was again relaxed, not straining to hear every word. I got to (took advantage of the opportunity to...) stand around and chat with people I haven't talked to much, and it was lovely.

So there's your update--thank you SO MUCH for your prayers!!


Anxiety on Saturday About Sunday Morning...

I sent this to my mom and dad on Saturday, and to my prayer partner at church:

Hi Mom and Dad
Ok, you guys...I have to admit I'm quite anxious about church tomorrow and what the experience will be like. My own voice singing still sounds like a scratchy, high-pitched, robotic monotone to me, and I think the sound of everyone singing at once will be horrifically overwhelming. I actually do not expect it to be a very pleasant experience at all. I'm trying to have "realistic" expectations" and I just don't know WHAT to expect.

A CI online friend said bring a box of Kleenex, it will be so wonderful. I think I might need them for the overwhelming disappointment of how hard it will be to adjust to that complicated and noisy of an environment--especially one that is so important and dear to my heart and soul.

It helps that I go to a tiny church rather than a mega one. It helps that we have fairly simple accompaniment. It helps that I know 95% of the songs. I even have a CD of William doing the Eucharist liturgy! So if I listen to that today, it will help me "build a template for his voice," according to the audiologist yesterday.

I dreamed last night I'd been kidnapped, and if the RA of my dorm didn't pay protection money to the local gang, I would be beat up. They sent me back to the dorm, and the RA said the dorm fund was in the red, and we didn't know what to do. A little bit of anxiety coming out in my dreams?!?

And when I woke up this morning, the last thing I wanted to do was put "that thing" back on. So I've been concentrating on quiet sounds, like enjoying the whoosh of pouring oatmeal out of the cardboard box into its tupperware container, the crunch of scooping some out into my bowl, the crunch of scooping salt out of a bowl, the crunch of cutting fresh strawberries onto the cooked oatmeal. (That's a lot of lovely crunches--most of which I had no idea happened!) So I'm trying to be quiet and kind to my brain this morning. Yesterday was fun, but exhausting.

The audiologist said don't work too hard on it, let it be fun. I am determined to make this work, and if that means relaxing and having fun, so be it! {grin}

So pray for peace for me tomorrow (and today, anticipating it), and for trust that things will only get better. Pray for some lovely "CI moment" at church, even if most of it is hard to handle or listen to or whatever it might be. Having fairly realistic expectations has helped me so much already, for the moment of hook up and for the rest of the day yesterday. I want to be realistic so that, yes, going to church tomorrow will be a joy and I will be so glad to be worshipping God, even if it sounds odd or difficult and so very different!!

Trusting Him to do His work in me--

Friday, March 24, 2006

Show and Tell in My Preschool Class

On the Monday before my surgery, I told the children in my classroom of 3-6 year olds that I was going to have this surgery on Thursday. I used the "Bionic Buddy" stuffed monkey from Advanced Bionics, the manufacturer of my CI, along with the coloring book. The monkey is mostly used for children who will get the CI, to have a "buddy" who has a CI, too. (His stays on with velcro rather than a magnet!) The coloring book tells the story of how Buddy couldn't hear well, was fitted with two hearing aids, and then went on to get a CI. It tells about going to the hospital and how happy he is with his new hearing.

The kids were mesmerized. I work at a school that mainstreams D/HOH students using cued speech (see and, and I have a student in my class, age 6, who has a CI. He was SO excited, and brought in his koala from his CI company (the parent company is in Australia...!). I showed them that I have two hearing aids, just like Buddy. I showed them a picture of the internal part of the device and told them how I had to have surgery to get it put in my head, just like Buddy did. I told them the doctor would write his name on my ear to be sure he operated on the right one! And I told them that after he cut very carefully to put the device in, I would get stitches on part of it and STAPLES on the other part. My students thought that was hysterical.

We have a huge model of the ear in the elementary classroom, so I used that to show them about the cochlea and how the implant would go through the bone into the curl of the part shaped like a seashell.

After surgery, I sent them an email with a picture of my doctor (waving to them!), a picture of me in my hospital gown and huge bandage on my head eating crackers, a picture of me and Joe, ready to go home, and a picture of me at home with the flowers they had given me the day before. The other teacher had printed it up and taped it on the wall in the classroom.

SO...I went back in today for a visit, before I get the staples taken out tomorrow. This time *I* was the show-and-tell! Forget the monkey; this is the real thing! And at the end of telling them about the surgery, they could ask me questions. Did it hurt? No, they gave me medicine to make me go to sleep so I wouldn't feel anything. But sometimes it hurts a little now. Was I scared in the hospital? No, everyone was very nice and took very good care of me. Some of the children talked about going to the doctor and getting a shot or being taken care of by a doctor. And, because of the email pictures, they all know my doctor's name!

Then came the most fun part: As I dismissed them from the line to get their coats to go outside to play, I let them come up and see my staples. That was a riot and a half. Some of them weren't so sure, some of them thought it was the coolest thing. The staples are metal and silver and look just like the staples in our stapler in the classroom, just smaller.

Then the office manager came in with a big envelope with a large card from them--she was about to mail it, but just gave it to me instead. It is SO cute. It says "We are so glad TO HEAR that you are doing so well! We miss you!" All of the children signed it and drew pictures all over it. One little boy came up to me to show me which was his signature: he can't quite write his name yet, but he managed his first initial, another letter, and his last initial, "And this is the period after it."

I rested for a bit in the nap room (how handy!) before I went in to the elementary children for the same presentation. They had not seen the email pictures, so one of the teachers went to get it from our classroom. They wanted to know why I was eating crackers. Because the medicine that makes me go to sleep so I won't feel the operation also makes you feel sick to your stomach.

I showed them on the big ear model where the surgery was and how the doctor inserted the magnet part. I told them the doctor carved a small hole or indentation in the bone of my skull to keep the magnet part from moving. One of the oldest children wanted to know how thick the skull is! Good question! I have no idea, but I do know he never got too close to my brain on the other side of the bone. I'll have to ask Dr. Micco when I see him tomorrow to get the staples out.

AND....IF...IF my incision is healed enough...I may even be able to get the external portion of my device tomorrow! That is the processor that hangs on my ear and the transmitter that will magnet on to the implant...that will turn ON the implant and activate the electrode and actually send some blips and beeps to my brain that may actually be perceived as SOUND!

So, tomorrow has the potential to be my hook-up day, my activation day, my first REAL day with an operating, functioning cochlear implant! (No wonder I'm up at 1AM telling you about it...) That appointment is at 8AM in downtown Chicago; I ought to be out of the house by 7AM to make it there on time through Chicago's infamous morning rush hour. (Mid day with no traffic it only takes about 35-40 minutes to get down there.)

Stay tuned for more exciting postings!

Tuesday, March 21, 2006

Encouragement from Ruth

I “met” Ruth on a yahoo CI group. Her husband Wayne had bilateral cochlear implant surgery on March 8, and is greatly looking forward to activation on April 7. Ruth has been an incredible encourager to the group. She has given me permission to share some of her words with you. I edited out what I found not applicable--so this also will illuminate some of what it has been like.

March 14, 2006, written to me:

Liz, I am Wayne's wife, Ruth, I thought I would give you a few tips since Wayne's surgery is so recent.

Things to expect: dizziness and vomiting post surgery and maybe a day or two longer. Be sure you keep your eyes open at all times you are being moved post surgery-to lessen the effect of motion sickness. This includes both bed and wheel chair rides.

When you get offers of help, suggest that food be brought to you for as much as a week post surgery. Even fast food you didn't have to prepare or TV dinners that take little prep time will be helpful. Let people help you. It is fine to ask and people want to do something. Besides if they didn't want to help, they shouldn't offer. Most of all have a good selection of drinks. You will need to drink, drink, DRINK to avoid dehydration.

The part I dreaded most was removing Wayne’s turban and washing his hair. This was almost the easiest thing I have done for him since his surgery. It just almost fell off.

Another thing that has helped is a small outing as soon as you can will do wonders for both you and your caregiver. Not a long distance or a long time. We went to my daughter's house which is about a 20 minute ride and seeing my newest granddaughter (born Jan 25, 2006) was a real pleasure. We did not stay long as Wayne was looking tired.

You will probably have various aches and pains you don't know the meaning of and will get so-o-o fed up with "that is normal" or "that is to be expected.”

Now that I have scared the stuffings out of you, let me assure you that Wayne and I both still feel that this will all be worth it in the end and that is what your focus must be. And he has done so much better than I expected that we can't complain.

I told Wayne back in May when we first heard about CI's that I would be with him for the long haul (I admit to sometimes thinking to myself "what was I thinking?) but having my love, my partner and best friend returned to the joy of hearing again remains an overwhelming thought.

If there is anything else we can help you with, please ask. We are here and wish for you God-speed for your surgery, recovery and activation


March 19, 2006, written to someone else:

This is Ruth, Wayne’s wife.

I noticed that you have staples in your incision and I realize that they look disgusting. They will however, come out almost painlessly. It probably would not be a good idea to try to wash your hair until they take your hardware out. No matter how careful you are, you might not get all of the shampoo and conditioner out from under the staples which could cause infection or other itching. You are the only person being bothered by the way your hair is and it is just for a little while. I know how revolting it is not to be able to do something so simple as washing your hair, but think how wonderful and awesome it will be to be able to hear.

All of the problems with sleepiness are because of having had anesthesia, a lot of anesthesia and as that gets out of your system, you will be able to stay awake longer, feel better and even walk without looking for the next hand-hold around the house. You had surgery; that is kind of like being hit by a truck. Take everything slowly and don't push yourself. If you have someone who can drive you, try to get out of the house for a short time. That works wonders for your attitude.

I did want to give you just a few words of encouragement. I know how much encouragement helped Wayne and maybe passing it on will help you. All of this is temporary, it will be better, and it is worth everything you go through.

You will get there, good luck, find something to occupy you mind and something to laugh right out loud about.


A Constantly Shifting "Normal"

Do you consider it normal and ordinary to get tired in the evening, get ready for bed, lay down, and go to sleep? I used to. But that's not "normal" any more. "Normal," post-CI op, is constantly shifting.

Last night, for example, I was very tired. I got ready for bed, looking forward to such an ordinary experience of going to sleep. No such luck. I had a low-grade air conditioning hum in my left ear. I had an oboe doing random arpeggios in my right ear. That was just while I was getting ready for bed.

Then I lay down, on my right side. I now had radio announcers on low volume doing advertisements in Estonian. Well, I can handle that. Eventually, I rolled onto my back. I got vertigo, that sense of the world, particularly the part I am firmly planted on, spinning around, like right after one gets off one of those tea-cup spinning rides. For a while, it's novel. After that, it's just annoying.

I usually sleep on my left side, and I was tired and I missed my "normal" position. I tried carefully rolling over onto my left side, cradling my incision area so I didn't actually lay on it. Pain pierced through my ear drum, like slow little pin pricks. Uh, not a good idea. I hadn't hurt anything; I've tried that other times in the past 4 days and it has worked just fine. I rolled back onto my back, but the pain didn't go away. So now I had the air conditioner, the oboe, the radio announcers, the vertigo, AND the pain. Lovely. It'd been 45 minutes since I went to bed. Helloooo?

They tell me all this is "normal," coming out of CI surgery. They tell me "not to worry." Yes, but sleep would be nice. I got up, took some Tylenol, and decided to try sleeping on the couch with my head slightly elevated. I've done that in bed, but sometimes I can't get the variety of pillows just right to sleep. The couch has just the right angle. I was too tired to argue with the pillows. John was on the computer doing homework in the living room, but willing to work with the lights dimmed very low. I finally got to sleep.

I had my ordinary really weird dreams (I get a kick out of trying to reconstruct the "story line" in the morning). I woke up a bit disoriented in the dark living room, to the wrong ceiling and no clock to tell me the time. Later, I woke up to light outside and Joe asking me to see if I can get a couple of teenagers out of bed while he goes for his morning run. Well, that part is normal, in this household!

Someone on a yahoo CI group said that having surgery is like getting hit by a truck. Good word picture! I can agree with that. Actually, that helped me put things in perspective and remember to continue to give myself and my body a break. I really DO need this time to recuperate, to recover from a major, disrupting event for my body. And it really is normal.

Sunday, March 19, 2006

Day Three; "How's Your Hearing?"

I continue to feel better and better. I am so pleased, and I appreciate the good wishes and prayers on my behalf! God is good, and this is so cool! I was able to eat three regular meals today, which was lovely in itself. And...everything tasted okay! I mean, it might not taste quite the same as usual, but at least it tasted good! Water is still really odd tasting, and it is hard to drink it. But I know I really need to stay hydrated as part of the healing process. So, I drink odd tasting water. Life could be a lot worse, eh?

A number of people have asked me how my hearing is now. This tells me that I have some explaining to do. I won't know how my hearing is until the external portion of the device gets hooked up and programmed. Right now the internal part is just healing. It can't be activated without the external part. And even once activated, the internal part is silent--dead, actually--without the external part. Only the external part has a battery, which, when connected by the magnet through my skin, will also power the internal part. IF my incision is healed enough, I may even be able to get the external part hooked up on Friday (3/24) when I get my staples out. Otherwise I will go back in on the following Wednesday (3/29).

Once the external part, called the processor, is hooked up, then it must be programmed. This occurs in several stages. At first, the audiologist only turns on a portion of the 24 electrodes, maybe eight. Since my brain has never experienced electrical stimulation of the auditory nerve before, it is a whole new and strange experience. It is overwhelming enough with just a few electrodes turned on! The first time, we will figure out what is a comfortable threshold for those electrodes.

Then after a week or so, I will go back in for another programming session. These sessions are called mapping sessions. The audiologist and I are creating a map of what electrodes are to be set at what level of stimulation. Also, additional electrodes are activated each time, until some mysterious "appropriate" level is reached. As my brain grows accustomed to the electronic stimulation, changes keep needing to be made, until things stabilize.

From what I understand from reading other people's stories, it usually takes at least 3-5 sessions to get things set. Even then, I may want to go back in again after several months to do further refining of my map. And I can keep going back as much as I feel I need to. And, "It's all included in the purchase price."

So, now you know the answer to, "How's your hearing?" It's still really weird. I cannot hear through my left ear. At all. So, I can't hear as well as I could last Wednesday. It's only temporary, until hook up, but it's definitely worse. That is hard to manage at times. I really need to focus on speechreading and concentrating all my effort on understanding what is being said.

Talking on the phone is awkward because I can just barely hear my voice. The reason for that is because I change the setting on my hearing aid to "telecoil." This setting allows me to hear only what is being sent through the headset using an electromagnetic signal, and cuts out any background noise. However, since my voice is "background noise" and my other ear no longer picks it up...I can hardly hear my own voice. That is rather disorienting. So, if you call me up, and we both get frustrated that I can't hear...that's part of why. And I can't read your lips over the phone! :p

Please let me know what other questions you may have--I'm sure others have the same questions, and using this blog to answer them will help others, too.

Saturday, March 18, 2006

Day Two After Surgery

We took the bandage off last night, and I didn't want to look at my incision. I just went to bed. This morning, I could not feel my ear--the whole thing is numb! I got all worried that something had gone wrong during surgery, but (blessings on them!) my new friends on the CI lists all reassured me that it's normal for the ear to be numb. So then I was ready to look at the incision. It's a lot smaller than some of the photos I've seen online! The bottom half is right in the crease behind my ear and is closed with dissolving stitches. The top half is straight up from the front of my ear about an inch and a half and is closed with staples. That looks SO weird! But it's a funny weird. Bride of Frankenstein. It's under my hair, so I can joke about it.

My energy level is still pretty low, and I'm not thinking too clearly yet. But I'm finally hungry! This is good. I had a bit of yogurt this morning, and it tasted good, and the texture was pleasing (especially after all the dry saltines!). But water tastes awful, which is a major bummer. It's common with this type of surgery to have the sense of taste disturbed for a while. So I'm curious to see what other tastes are thrown off.

Friday, March 17, 2006

YAY! Day After Surgery!

Thank you so much for praying with me yesterday. Lots of praise now! I had a great day! I made it FUN and everyone cooperated: I told anyone that walked into my cubicle, "I'm a preschool teacher. I have to do show and tell when I get back to work. So I have to take your picture!" It put everyone in a fun frame of mind, and everyone was so nice. Dr. Micco let me pray for and bless his hands before surgery, and that was a joy, too.

Dr. Micco felt the surgery went very well; we left the hospital by 5pm. I obviously still feel woozy and all, but mostly I feel "great"!! I only took pain meds once last night, and may not have needed more than just Tylenol then. So far today I have only taken Tylenol once.

Now you can pray I behave and take it easy enough. :)

The one thing that I have noticed being weird so far is when I talk on the phone. I put my right hearing aid on telecoil, and I no longer can hear my own voice in my left ear. I can't hear any background noise in my left ear.

People told me to expect that tinnitus would be a lot worse after surgery, that it would be louder. It's like a phantom limb after amputation, where the brain notices there's no stimulation that had been there before, so it makes something up. My tinnitus usually sounds like a low-grade motor hum, with other bells and whistles on occasion. Yesterday, the extra whistles sounded like a sliding whistle: "whoooup!" That was weird, too!

More later when I'm more alert. Back to sleep now.

Thursday, March 16, 2006

My Pre-Surgical Prayer

Father God,
Thank You for this amazing opportunity. Thank You for the peace that floods my whole body this morning. Thank You for the wonderful support from so many friends, from my family, from people I've never even met in person, but are so caring and supportive over the Internet.

I am in awe of the incredible creation of the intricacies of the ear, of my ear, of the wonder of hearing and the joy it gives. No human creation can ever duplicate the glories of Your hand! I also am in awe of the wisdom and knowledge and discernment and creativity You have given to people over the years, to be able to come up with something so amazing as this cochlear implant I am about to receive. Thank You for the researchers and doctors who have dedicated so much time and energy to bring this invention to this stage, to be able to make me hear again. Thank You for all the patients who have gone before me, who have taken the risks to try an unknown invention, not just for their own benefit, but for the benefit of generations to come--and now it is my turn to benefit. I am so grateful, so very grateful. Thank You, God, for all of this!

I pray for Dr. Micco and his surgical team. Thank You for the talents You have given them, for their dedication to build their knowledge and skill, to be able to perform this surgery. I pray that you will guide Dr. Micco's hands, that You will bless them and protect them. I pray that you will protect me from any complications, that You will guard my body, guard my nerves and muscles and bones from any possible errors of judgment or skill. I pray that You will protect the equipment from any kind of technical malfunctions or breakdowns. And with this snow storm predicted for today, I pray that You will bring each person needed safely to the hospital today, safely through the traffic and whatever weather they and we may encounter.

Thank You that You are faithful. I praise You that You are not only righteous in everything You do, but that You are also full of kindness. I pray that You will bless this whole day, this whole procedure, and that in the coming weeks and months, I will be diligent to do my part of the working out of this miracle that seems to be of human hands, but truly comes from You.

You are the Almighty, the King of creation, and I praise You and I love You.
Thank You so much for this opportunity.

Monday, March 13, 2006

Hearing Biography

Someone asked me today for a hearing bio, so I worked on some notes I had for when I was asked to speak at the local "Self Help for the Hard of Hearing" group (or "SHHH"). I figured it was worth posting here, too, since I put so much work into it. It's rather long, so read it at your leisure... :)

The woman who leads the Chicago Northshore local chapter of SHHH asked me a few months ago if I would tell my story at a chapter meeting. They meet at the local Senior Center, and I'm the only one there (usually) under the age of about 75. I’m 47. The joke is, "they let me in even though I'm underage..."

When I asked what I was supposed to talk about, she said, "Just tell your story. You have a lot of interesting things to tell about." Oookay. So, here's my basic outline, hopefully in a fairly organized fashion.

- I was born in Rochester, NY, home of the National Technical Institute for the Deaf. My older brother learned enough sign and finger spelling to be able to tutor in their Physics department while he was attending Rochester Institute for Technology. He used to practice in church, translating the sermon down on his lap.

- I have a large loving family. I am the 4th child of 6.

- I wondered about my hearing when I was in my 20's, feeling like I had to ask people to repeat themselves more often than others did. I had a few people get impatient with me. "You're just not listening carefully enough." At 28 I had a hearing test, done by a nurse in the regular doctor's office. But they said it was normal. Well, it may or may not have been. And I got pregnant, and they said to come back after that. I gave birth to identical twins in 1988.

- When my children were about 2 or 3, they would parrot things back to me that I said often. One thing they said was, "I can't hear you. You need to talk louder." Hmmm. So I went back to my regular doctor. The nurse tested me again, and they said, "well, maybe; go see the ENT specialist." He did the booth testing and said I might benefit from hearing aids and that I would benefit more from two than from one. As far as he could tell, it was not due to damage; it looks like an inherited/congenital loss that shows up in your 30’s.

- I got my first set of hearing aids on my 33rd birthday, and I was so excited I was almost in tears. I spent the first day delighting in all the sounds around me--I heard Velcro across the room! I noticed all sorts of things! The next week, however, was a nightmare of auditory overload. I had to re-learn how to sort out sounds that were important and learn to ignore what I could.

- As soon as I got hearing aids, my mom and dad went out and got hearing aids. My mom said, “I was already the oldest person on the faculty (at a small private school), I didn’t want to get hearing aids and make it more obvious. But if YOU have them, then it’s not ‘an old person thing.’”

- During this time, I went back to school to get my bachelor’s degree in early childhood education. With two small children of my own, it took me eight years, but I finally did it. I graduated from National Louis University with my first BA, with the class of 2000. I got my Illinois state teaching certificate and went to work at my children’s school, Christian Heritage Academy, as an aide in the 3-year-olds preschool class.

- Over the next 10 years, my hearing loss progressed. I got progressively stronger hearing aids, moving from in-the-ear to behind-the-ear. My hearing wasn’t really an issue in classes or even once I began working. Although I did begin to notice more often that I couldn’t hear as well if someone wasn’t facing me. But it was still very manageable.

- I taught a Sunday school class at my church and met a little girl, just barely two years old, with two hearing aids. Kimberly would come in, check to see I had my aids on, show me she had her aids on, and then go play. I got to know her and her family. They used this new thing called cued speech I’d never heard of, so I went to a workshop and learned the basics. The next day I cued a children’s worship song to her mom and dad and they started to cry. Kimberly was able to understand things like “goldfish” and “sit down.” Her mom kept telling me I should go teach at this school where Kimberly got her speech therapy, Alexander Graham Bell Montessori School. I very politely told her, “No thank you; I love my job, I have no interest in changing jobs.”

- We spent the summer of 2001 on a mini-sabbatical sort of trip to Australia, and I was highly frustrated on the phone. When we got back, I went to the audiologist, saying, “These hearing aids are driving me nuts! Send them in for repair!” He checked them out and said, “Your hearing aids are fine; let’s check your ears. So I made an appointment for a hearing test for the next day.

- That next afternoon I found out that I no longer had any response to high frequencies in my left ear. It was September 11, 2001. It was a rough day for all of us as Americans, but doubly so for me. I was literally going deaf. I came out of the audiologist’s office in a bit of shock. I got into my car and grabbed the steering wheel and worked on breathing calmly. “Ok, God, I guess you want me to go teach at AGBell.” More on that later.

- That hearing test really shook me up. In 18 months, the progression of my hearing loss had gone from a gentle slope to a cliff. And because everyone was so freaked out because of the terrorist attacks in NY, I felt like I was dealing with it in isolation. It was very difficult.

- The audiologist sent the results to my PCP, who sent me to the ENT to see if there was something going on other than an “ordinary progressive hearing loss.” The ENT didn’t find anything, but sent me to a neuro-otologist. He looked at all my tests and said the way my loss was progressing, I could very easily be a candidate for a cochlear implant within a year. That was both exciting and very frightening. I was terrified of the thought of going deaf. Also, I knew my hearing had to get “bad enough” before I would be a candidate, which meant it had to get a lot worse before I could do anything about it.

- I got my hearing tested about every six months after that; my audiologist had a policy that patients could get a free basic hearing test if they had hearing aids from them. After one, a new (young) audiologist (?) at the office asked why I wanted it so often. Upon hearing I thought I would qualify for a CI soon, she waved her hand and said, “Pft! You are nowhere near qualifying for it. I just took a class on CI’s so I really know about it.” Talk about not having any bedside manner! I was devastated.

- Somewhere in there, I visited AGBell in January of 2002. I met with the administration and observed in the classroom. Finally something was going right--I loved the place. But they said I needed to get the Montessori training to teach there.

- So, in 2002, I began my Montessori training. The main thing I noticed was that I could no longer function in a lecture class--I could not understand the teacher above all the background noise, and I could not understand the other students in a discussion. By the time I figured out who was talking, the comment would be over and someone else would be speaking, so I could never read lips. I went out into the parking lot during breaks and cried. My brain was fried on auditory overload. I called and ordered a personal FM system, and had them FedEx it to my school! The teacher wore a microphone and I wore the receiver. That helped SO much!

- Then in August I began at AGBell. It was a challenge, but I have loved it. I have been able to be a role model for the children who wear hearing aids. One little guy got tired of wearing them and decided when he turned four that big boys don’t need to wear hearing aids. So I talked to the whole class at our time on the line about how I wear hearing aids, and I’m so glad I do, because it helps me hear well enough to understand them. That (plus a few other interventions) helped this little boy decide it was ok to wear his hearing aids.

- About a year ago, I went in to my audiologist, highly frustrated with my aids, wanting to get them repaired. The regular young audiologists were not there, and an older gentleman was seeing patients. He ran quite late, and I was even more frustrated. When it was finally my turn, though, I found I really liked him. He struck me as someone who could be somebody's favorite uncle. I told him I wanted to get my aids repaired and he replied, “Why do you want to get them repaired? You should just get a cochlear implant.”

- I froze inside. Do I really want to go down that path of hope and devastating frustration again? I gave him a long hard look. Do I trust you?

- I told him my story, and he was so gentle and compassionate. His name is Larry Hable, and he has worked in the hearing aid field for 42 years. He told me that the candidacy requirements continue to change, and he thought I would very likely qualify right away. He told me the name of a doctor at one of the centers in Chicago that does CI’s, and that he highly recommended him.

- I called that doctor’s office and made an appointment for an initial consultation. I had to pay for it out-of-pocket because my HMO didn’t cover CI’s or "other prosthetic devices such as artificial limbs or wigs." (Huh?!?) The CI team approved me and I decided to see what I could do to fight the HMO.

- Fighting the HMO didn’t work, so my husband switched insurance during his emplyer's next regular benefits re-enrollment period, which meant no “pre-existing condition” penalty!!

- In the meantime, I went to an Illinois Cochlear Implant Club meeting. The speakers were the CI team from Northwestern Memorial Hospital, also in Chicago. The surgeon is Dr. Alan Micco; the audiologist is Pam Fiebig. I really enjoyed them; I found them to be very knowledgeable, professional, and yet also playful and fun to be around. I decided to have a second "initial consultation" and see what I thought.

- I loved them. Not that the other doctor wasn’t competent or nice, but I really like this team from NMH. I figure if I have to work with them a lot once I get the implant, these are the people I’d rather work with.

- Blue Cross Blue Shield of Illinois approved my surgery, and my implantation date is March 16, 2006! I have chosen the Advanced Bionics Auria HiRes Implant. I’m excited and nervous and anxious and scared and thrilled all at the same time.

Wednesday, March 08, 2006

Six Days to Surgery!

I've got the jitters back. I'm mostly upbeat and excited, but there's a low-grade anxiety that is manifesting itself in some of my "favorite" coping behaviors, such as consuming chocolate and wasting time reading drivel on the computer or in junk mail magazines and ads. Yeesh!

I think what is throwing me is the realistic expectations about being deaf in that ear until hook up, and then managing the gradual and perhaps slow process of teaching my brain to interpret these mysterious blips as sound. One author said she never really grieved becominging deaf until she got the implant and realized how much she had really been missing all those years of her progressive loss. Another author said he had never appreciated the concept of silence before he had the implant, because he had such incredible tinnitus that he had never experienced silence. He was one of the lucky ones; more fully stimulating the auditory nerve "cured" or at least significantly lessened his tinnitus. I have pretty constant buzzing, bells and whistles, tones, and zings and zaps. It's really unnerving sometimes, when I take out my hearing aids, and that is all I can hear. It's like The Twilight Zone or some other surreal environment. And I will be 100% deaf in my left ear any time the external portion of my device is not connected. (On the other hand, I'm already about 92% deaf in that ear, so, what's the big difference??)

I can tell that my hearing is getting worse. It wouldn't surprise me too much if I end up qualifying for a second implant sometime in the next five or ten years. That's both disconcerting and exciting--that I have the answer already in place should the "worst case scenario" happen.

So....I need to take a deep breath and focus on the fact that I have wonderful people around me that will help me in the whole process. My husband is wonderful, my teens are pretty darn good (for teens, anyway!), my church is supportive, my colleagues are major-city incredibly supportive at work. I need to breathe, counting my blessings on the inhale, and saying many prayers of thanksgiving for the blessings on every exhale.... That will help.

Thursday, March 02, 2006

Two weeks and counting

Two weeks until my surgery March 16! Now is when I have to cut out asprin and ibuprophen products, as well as many herbal suplements. I don't personlly take any, but the list was quite interesting, with things like no massive amounts of garlic. But I don't have to stop multivitamins, which do contain Vitamin c and E, even though they are listed as supplements to stop. So I'm figuring that having garlic in my stew for dinner is not going to hurt any.

I'm fighting a cold; as a preschool teacher, it's an occupational hazard. We have two kids out and several others with cloggy noses. Last night I was pretty wiped out. I have to get better (and not catch anything else?!?) by my surgery date! So I'm resting carefully.

John is my knight in shining armor this evening, making dinner for us. It's a big pot of chicken, soup broth, onion, celery, carrots, tomato, sugar snap peas, garlic and barley. I bought some "Organic Vegetable Broth" at the grocery store to be the base. It's pretty salty, as usual, but with all the other stuff, I think it will dilute to a reasonable amount of sodium per serving. I was touched by how graciously he did all that work chopping. (Thanks, John!)

Oh! And I've passed 15 pounds at Weight Watchers! I was amazed to lose any this week, because I did a bunch of stupid eating in the past few days. Yikes. But I also exercised a lot, and I had a better day today. I'm not off the wagon yet--but it was a close call that serves as a good call to renewed commitment. I really want to stay off any blood pressure meds.