Saturday, October 27, 2007

Lord, Listen to Your Children Praying

Prayer time is a very sacred and special time in church, in small groups, in Bible Study, and at home. Prayer is the vessel that drives the church. Lately, praying with my church family and friends has taken on a new dimension. I almost hesitate to share it here because it is so personal. But, as I continue to learn to hear with my CI's, prayer time in a group and home setting has become more meaningful and special.

For years, I usually felt left out when it came time to pray because I couldn't see the lips of the person praying. Or I sat too far away. Unless I could see or read the person’s lips that was praying, I usually prayed alone. It’s hard to pray alone when you feel "forgotten." I'm sure I wasn't the only one in a church environment that needed to read lips or see a face during prayer time.

And, even if I could read the person’s lips that was speaking, I was the only one in the room with her eyes open. By doing that, I felt like I was always invading someone’s personal space and privacy during prayer time. I could see their facial expression or their tears running down their faces. And, I knew whose hands went up during an "invitation." Often times a family member or friend would sit next to me and silently mouth or tell me what was being prayed.

And many times I would get frustrated because people in church or Bible Study would not be aware that I needed to see their faces. They would turn away from my view unintentionally or bow their heads where I couldn't "see" them. I’ve been to churches where the pastor would turn and have his back to the congregation and face the altar during prayer time. Once they realized that I needed to “see” them, they would usually be willing to accomodate and change their position for me. Especially Pastor Steve at Tabernacle Baptist Church in Ohio. He was extra sensitive to my need to hear and understand him during this special time. He would actually come down to the aisle near the front of the church and make eye contact with me as he prayed. That meant a lot because I knew he cared. I always appreciated that because he never “forgot” and knew when I was in the congregation. Other pastors or leaders would often forget and turn away. And I would wait until I heard the familiar words to “The Lord’s Prayer” to know that prayer time was over.

Over the last few months, prayer time in a group setting has become very emotional for me. Because I can “hear” the people praying. I don't need to read lips all the time anymore. I can hear AND understand Pastor Jeff at Sycamore Tree UMC when he prays. He has wonderful prayers and speaks very clearly and at a nice pace. I've listened to his prayers and read his lips for many years so his style and voice is familiar to me. Two years ago I had to "read" every word he spoke. Today, I can understand his prayers without the need to read his lips. And I am able to focus and feel the spirit moving within the church body as he prays. Same thing in Bible Study. And in church meetings.

It helps if I am familiar with a person's voice. Listening without reading lips is hard work and sometimes I feel the need to take a break and "look" again. Part of it is habit because I've read lips for most of my life! I usually "look" when someone is speaking softly or too fast because I don't want to miss anything. It doesn't take long for the tears to start welling up in my eyes because this is a whole new experience. . . to actually feel and touch the spirit within the walls of the church and "hear God."

The words to the following song keeps coming to my mind so I'll close this entry with the lyrics. These words were written by a man named Ken Medema. And he is blind. But he can hear the people praying because he can't see them. . .

Lord, listen to your children praying,
Lord, send your Spirit in this place;
Lord, listen to your children praying,
Send us love, send us power, send us grace!

Lord, thank you. I can hear your people praying!

Tuesday, October 23, 2007

The Internet Community

Just a quick post here to let my readers know that I am still here. Just can't sit down long enough to write a post but I have some in the "pending" file.

But, I wanted to share with you all that Michael Chorost, who wrote "ReBuilt" about his cochlear implant journey, has FINALLY been approved for his bilateral implant and will be having his surgery on December 17th. I cannot tell you how excited I am for him because this has been a long battle for him. He made the announcement on his website this week. I've known about this for awhile because he sent me an email as soon as he found out. It is very hard to keep a secret like this but I couldn't say anything because of the insurance issue. Aetna, a major insurance company, has just changed their policy to include bilateral cochlear implants. This is HUGE. Now anyone with Aetna can have a chance to hear with two ears instead of one. I thought I was going to have to wait until after Michael had the surgery to tell anyone about his victory. We both have our insurance with Aetna but for some reason I was approved for bilateral implants (a year ago this month) while he had to fight for his. Let's just say that he had a little "help" with his case and I'll stop there. I can't wait for his next book to come out about being "Rebuilt" again!

I've said this before and will say it again. . .I've finally "found" my group through the Internet and my local HLAA group. What I mean by this is that for years, I didn't fit in the deaf world OR the hearing world. Since I started my CI journey, I've discovered another "world" out there of people just like me with a severe hearing loss, who grew up oral, never learning to sign, and struggled for our place in this world. People like Michael, Jennifer, Susan, Sam, Mike, Joyce, Norm, Dixie. . .just to name a few. We all have a story with a common thread. . . and I am grateful to know these special people and be a small part of their lives. Together we can "pave" the way for future generations, especially children, who struggle with hearing loss. Thank you, my friends, for all you do.

Sunday, October 14, 2007

A New Bilateral Map

Last week, on my day off (Columbus Day), I went to the University of Tennessee in Knoxville to have my processors mapped by a new audiologist. Now that I have settled in with my bilateral cochlear implants, I am free to choose the audiologist for my mapping and maintenance service. I know I've said this before but the most important relationship that a cochlear implant patient has is not just with their doctor who performs the surgery but it is with their audiologist who programs the processors, provides therapy, and other ongoing maintenance. This is a lifetime relationship. There is no question that there is a shortage of audiologists that are trained to work with cochlear implant patients, especially in our area. I was not completely happy with the service that I was receiving from my doctor's audiologist (and office) and have made the decision to go elsewhere for my processor needs and therapy.

Julie, at the UT Department of Audiology, is my new audiologist and she is wonderful! She normally works with children but several adults in our area have found their way to her and have highly recommended her. She says she enjoys working with adults because they give her feedback that the children can't. I had been trying to get an appointment with her for over two months but we could never make our schedules work because we are both so busy. My session with her and her graduate student was over two hours and I was exhausted by the time we were finished. I'm used to one hour appointments but not 2 1/2! But, Julie worked her magic on my processors, made some suggestions based on what I had shared with her, changed some settings and parameters, and fixed some mistakes that my previous audiologist had made. She also gave me a new program to try at a faster rate. (But I am not crazy about it and will probably go back to my original rate.)

What was interesting was that she could not get an NRT (neural response telemetry) for my left ear, which is the implant I received two years ago. For those of you who don't know what this means, it is a test that is done to directly record neural responses. Surgeons use this test to make sure the implant is working properly and is effectively stimulating the hearing nerve fibers in the inner ear. It a quick test and is done in a matter of minutes.

Audiologists use this test, also, when mapping children because it sets up the progamming parameters automatically and speeds up the mapping process. (Children cannot always sit still like adults can.) During a NRT test, an electrical signal is sent to the implant electrode and the activity in the hearing nerve is recorded. All of the 22 electrodes of the cochlear implant can be measured if required. This NRT test can be performed during the cochlear implant surgery and at the follow-up appointments any time after surgery.

Because of some previous errors in the programming of my left processor, the map could not be read on Julie's computer, even though she could see the rest of the information (serial number of processor, map numbers, my name, etc.) When she started the NRT test on the first electrode, it sounded like a telephone ringing in my ear. Then, my eye and face started twitching involuntarily and got worse in a matter of seconds. I told her my face was shaking and acting funny and she stopped the test right away. Then she moved to a different electrode. Same thing. We did this with all of the electrodes and still could not get a reading and my face was doing strange things every time! The test was affecting my facial nerve. I've heard of this happening to other CI patients when they get their processors mapped but have never experienced it firsthand. It felt like I had a paralyzed face that was out of control and it was giving me a headache! Luckily, I had my previous map with me on paper (I get copies after every session) so she put the parameters in the computer manually. Then she adjusted them and continued with our mapping session.

My right ear is my newest implant and I favor it. It was my favorite ear when I had hearing aids, too. I had a NRT performed on it back in March and got an excellent reading on it a week after my activation on that side. Julie wondered that maybe we could not get a NRT reading on my left ear because it is not my favorite side. So, the next time I see her, we are going to try a NRT test on my right ear (we ran out of time to do it.)

One of the things Julie did differently was that after she "tweaked" my map a little bit, she held a magazine over her lips (so I couldn't read them) and read a paragraph out loud to me. Then she made some more adjustments and read the same paragraph again. I had to tell her which one sounded better. Kind of like an eye test for glasses. We repeated the process several times until we settled on a map that sounded right to me. I even got more words each time she reread the paragraphs.

After a few days, I could tell a huge difference with how I was hearing and what I was hearing. It took awhile to get used to the new settings. They were so different that I've had to turn down the sensitivity and volume on BOTH processors. I'm hearing things more clearly and distinctly and am picking up more words and sentences on the radio and phone. I also feel more balanced. I feel like I got new ears like a person gets new glasses! My bird clock sounds better and so do the birds! Their songs are different, too. I don't know if it is because of the cooler weather or if it is because the crickets are quiet again. I am sitting outside as I write this and can hear the wind in the trees - it is such a soothing sound.

My previous audiologist had told me that I would not need another map for at least a year but after four months, I knew things were changing and not sounding quite right. I've taken charge of my hearing health from the very beginning and knew what to expect and what to look for. If I had not done my research or found the support groups that I have with other cochlear implant patients, I would have been lost. Sadly, that is not the case with everyone and there are those who are disappointed with their implants because they can't hear right or have not received the proper care in their mapping sessions.

Cochlear implant surgeries are not money makers for surgeons or their hospitals. This is hard to believe because the surgery and equipment is so expensive (over $70,000 per ear). The surgeons and clinics get their income from their patients' follow up care appointments through their audiologists. So, it is very important for surgeons to have competent audiologists on staff who are trained to work with cochlear implants. The decision made by patients to have cochlear implant surgery is not made lightly. CI patients have a right to proper and adequate professional care afterwards because, after all, it is a lifetime relationship.

Julie told me that cochlear implant patients should be mapped at least every three months during the first year. So, I will see her again in January, after the Christmas holidays.

But, every day is Christmas for me because I can hear!

Thursday, October 11, 2007

Schonbrunn Palace in Vienna, Austria

Steve and I are back in the states from our trip but I have not felt well since our return. But, here are some pictures from the Schonbrunn Palace that we visited last Friday on our last day in Vienna. Enjoy!

Steve "introducing" the palace
Isn't this gorgeous??? One of many flower beds
I wonder how long it takes to trim these trees???
"Palmenhause" greenhouse at Schonbrunn Palace

Monday, October 01, 2007

Sigulda, Latvia

On Sunday, Kristine (our “Latvian” daughter), Ziggy (her brother), and I went to Sigulda for the afternoon after we got done with church. Ivo was our driver. The traffic was congested all the way there and Kristine and I just about got carsick with Ivo’s driving! Sigulda is about an hour from Riga and is another popular spot for the locals and tourists. This town celebrated their 800th anniversary this year! The fall colors were absolutely gorgeous and the weather was perfect and fall-like with temperatures in the 70’s. (Steve did not join us because he was entertaining our U.S. clients that came the day before and had meetings in the afternoon.)

We stopped on the bridge at the Gauja River first. The Gauja River is one of the most dangerous rivers in Latvia because of its unpredictable currents, twists, and turns. But it is also beautiful.

I thought this sign was particularly funny – it was advertising a place where you could ride a guardrail!
Our next stop was the ruins of a castle. The story here is that during the Russian Revolution and Occupation, the Latvian soldiers took refuge here. But the Russian soldiers could not reach them because of the steep hills. Kristine, Ziggy, Ivo, and I climbed to the top of the tower on a very narrow stairway. Ziggy said he was proud of me because I climbed the tower faster than the Faithful Men wives did last year when they visited! (The Faithful Men is a men’s choir from our church and they come to Latvia every two years to sing and share their ministry with the people here.)

Tree Stump

Church (The Faithful Men sang here)Castle RuinsCastle TowerView from Tower Kristine enjoying viewWall Imitation!

After we left Sigulda, we stopped to eat at a small café. I had solyanka soup, which is one of my favorite soups to eat here (I have yet to find a recipe for it), with dark bread, and a vanilla milkshake. Kristine speaks Latvian and English fluently so she is a great translator to have when we go places. I don’t feel like I’m missing anything because she makes sure I understand what is going on.

Our afternoon went by quickly and they dropped me off at the hotel when we got back to town. I met Steve, his clients, Sergey & Irina (who work for us in our Latvia office) and we went to a “Garlic Restaurant” to celebrate a good day (we got our first agreement for a project here). Every other item on the menu had garlic in it. I had a salad with tiger shrimp and champagne, which was delicious. Riga has little cafés and restaurants all over the city and they serve the most delicious and unique foods. I told Irina that I hope we all don’t smell like garlic in the office on Monday!