A Very Special Request

Last month I received a very special request from another blogger who lives halfway around the world in Norway. His daugher, Lotte, wears the BTE (Behind The Ear) Cochlear Freedom Processors and is also bilateral like me. Her father asked me to be a guinea pig for an unusual experiment....

You see, Lotte does not wear her processors behind her ears but on her shoulders in little handmade pouches. Several medical specialists do not like the way she wears them but really cannot provide an answer why her cochlear implant processors should be worn on her ears. Lotte was implanted at a young age and has always worn her "ears" on her shoulders. And does not want them any other way. I know of other bilateral children whose parents put the processor(s) on their child's shoulders because it keeps them from falling off their small ears or manipulating the controls or losing them. Lotte's parents want to have some ammunition the next time the doctors and audiologists started complaining.

So, Lotte's dad reached out to me via Facebook and asked me to try wearing my processors on my shoulders for a few days so that they could have an adult opinion when this issue came up. Lotte is still too young to give them feedback on what or how she hears because she does not know anything different. Her parents are curious to know if sounds are softer on the shoulder or more difficult on the shoulders as opposed to being on the ears. They also wanted to know if there was a difference if the processors were covered with a coat or jacket, whether sounds were easier to hear without the wind blowing across the microphones or they were more muffled. I tried hanging my processors off my ears but my coils were too short to notice any changes in sound perception. After we traded several messages, here is what I got in the mail....this...

... and this! They sent me some "pouches" for my processors to clip on to my clothing, a pair of long coils, and the sweetest note! I have a feeling that Lotte put those stickers on! I love the beautiful handwriting, too.When I was Lotte's age until the age of 20, I had the most powerful body hearing aid available on the market and wore it tucked in my bra. I was very creative hiding my cords using my bra straps and rubber bands because I did not want anything to show. My microphones were in front of me on my chest. In fact, when I talked on the phone, I looked like this:I never really knew a difference having my "ears"on my chest because I did not have anything else to compare with and it was all I knew. And heard enough to get by with what little hearing I had.

Later, as an adult, I was tired of the "box" on my chest and got BTE hearing aids, mainly for cosmetic reasons. Even though the BTE's were not as strong as the body aid, I did not care because I wanted to "look good" and not have to bother with the cords, etc. My hearing was so poor that I really couldn't tell the difference between the body aid and the BTE's on my ears, except the BTE's were softer and not as strong.

I was honored and happy to do this "experiment" for Lotte and her parents. Not everyone can move their "ears" to their shoulders! The first thing I noticed was that my voice and sounds were very "nasal" or muffled, as if I had water in my ears or was in a swimming pool area. That did not change after a few days. But, the brain is an amazing organ and probably would have adjusted if I had kept them that way for a longer period of time. It was also very inconvenient having my processors on my shoulders because I could not change my batteries or change my programs or settings quickly. Lotte's parents probably handle those details for her. And, it was almost impossible to use the telephone. I had to move the processors to my ears to use the phone. Also, there really was no difference with or without a coat or sweater covering the processors on my shoulders. When I wear a hat over my BTE processors, I hear fine. I do like the sound of the wind so it does not bother me if it is there or not.

But, after I thought about it for a while, I realized that the distance from my ears to my shoulders is probably greater than for a child like Lotte. And the space from shoulder to shoulder is a greater distance on an adult when compared with a child. So, Lotte's processors are probably closer to her ears than mine are when I wore them on my shoulders. That may change as she grows. I still got "surround sound" no matter where the processors were located.

My advice to Lotte's parents was to let Lotte make the choice how she wears her processors. Why change something if it isn't "broken?" It should be her choice to move her BTE's to her ear. She may change when she gets older for convenience, or when she wants to look good, or when she sees how others wear theirs, etc. She does see other children with BTE's on their ears with amazing contraptions to keep them there but her father says she will follow her own way. She does not complain and is a happy seven year old going to school, interacting with friends and family, and even playing the piano. I really do not not think it should be an issue because she is hearing sounds, communicating, and is getting surround sound. There really is no "right" or "wrong" way to wear a cochlear implant processor as long as a person can hear!

To my readers, if you are a parent of a child that wears cochlear implants or hearing aids, an adult CI user, an audiologist or other health professional reading this, please do two things for me:

1. Leave a comment on your thoughts or experiences on this post for Lotte and her parents, AND...
2. Go visit Lotte's blog and say "hi!" She'd love to hear from you!

Bilateral Cochlear Implant Anniversary

A year ago today I went under the knife again to have my second cochlear implant surgery. What a year it has been! I truly love hearing in surround sound and am forever thankful and grateful for the opportunity to hear this well in my lifetime!

Today (Wednesday) was an interesting day. I participated in a research study for a graduate student at the University of Tennessee (Knoxville) in the Audiology department. I had to answer some general questions about my hearing history and my implants. Then she put me in a chair inside a sound booth. And attached five electrodes/sensors to my head and earlobes. I had to be very still and watch the movie "Finding Nemo" with close captioning and NO SOUND. The sound that I did hear in the booth was the word "she" repeated over and over THE WHOLE TIME! Imagine hearing "she-she-she-she-she-she-she" constantly while trying to watch TV . . . at varing levels of sound. When we started the test, she kept stopping and asking me if I was comfortable. I told her I was fine but she wasn't satisfied with her readings or whatever on her computer. She kept turning down the "she-she-she" volume and finally I told her that if I was at home trying to work on something and the TV was too loud, I would ask for the volume to be turned down. So, she turned it down a little more. It went up and down several times during the test. When the volume got louder, I could feel my heart racing faster. We took several breaks during the test so I could move around a bit, drink some water, etc. I was not allowed to move at all or cross my legs during the test. At one point my neck, shoulders, arms, and fingers got numb! The test lasted for about an hour (and I didn't get to finish the movie!) The student was very glad for my participation and I was happy to help. I got paid for doing it but I told her she could keep the money. She is looking for more participants in the Knoxville, TN area so leave a comment if you want to help her with her research project.

On Monday, I went to the same department for a mapping session for my cochlear implants. Last week I started having to replace my batteries EVERY day instead of every 2.5 days like I normally do. I sent in an order for batteries right away because I was running low FAST! I also sent an email to my representative at Cochlear about this wondering if I got a bad batch of batteries. She said it was probably my map or processor and advised me to see my audiologist. Luckily I already had my appointment with Julie set up weeks in advance. Julie did not want to map my processors because she was concerned that I had a defective one. It is still under warranty and she contacted Cochlear Corporation to order me a new one. In the meantime, I'm using a loaner processor. I could tell a difference in the sound right away when I started wearing it. It was as if someone turned the light on and the sound became clearer and crisper. BUT I'm still changing batteries once a day. Something still isn't right. Julie will let me know when the extra processor comes in and I'll get mapped before our insurance runs out next month. (Still working on that issue and it has consumed quite a bit of my time!)

Someone asked me if I was hearing new sounds and I had a hard time answering that. What I hear sounds so normal and complete that I don't really pay attention. But, I do notice the sound of the fan when the heat kicks on, the clicking of the ceiling fan in my office, the rising and ebbing sound of the rain on the roof, the pitter patter of the dogs' feet when I call them, etc. I also love the sounds of silence, too, early in the mornings - clocks ticking, birds chirping, the coffee maker making my coffee, certain people in this house (I'm not naming any names!) slurping their drinks, the dogs breathing or snoring under my desk, computer keys clicking, the increasing sound of the cars going by as they go to work, school, etc. I'm doing better on the phone but still have a phobia about answering it. I can hear and understand more and more phrases on the TV & radio. Life is good. I have no complaints!

Now, excuse me while I go finish "Finding Nemo" . . .

(Note: I've added a link on the side bar for my favorite posts that were buried in the archives. Enjoy!)

Hearing Impaired and CI news

The ADA (Americans With Disabilities Act) prohibits discrimination and ensures equal opportunity for persons with disabilities in employment, State and local government services, public accommodations, commercial facilities, and transportation. It also mandates the establishment of TDD/telephone relay services.

I frequent other hearing impaired and CI blogs and just had to share this bit of news with my readers. Karen, a hearing impaired blogger that I read regularly, was recently denied service at a Steak 'N Shake drive thru window by the general manager because she would not place her order from the drive thru speaker. All she wanted was two milkshakes, one for her son and one for herself. ABC news and Fox News picked up the story. You can see and read about it here and here. This is making news all across the Internet on deaf and hearing impaired blogs and websites. I will be following the events of this story because it is clearly in violation of the ADA regarding public accommodations. And I'm glad Karen is sharing her story. We need more people like her to speak out for those who can't. And, she isn't asking for money or anything, either. . .she just wants Steak 'N Shake and other similar establishments to be aware of the needs of those who are disabled.

This struck a familiar chord with me and I thought I would share some thoughts on this. The ADA has been around for quite some time. It is pretty sad that there are still businesses and organizations out there who still don't (or won't) educate their employees to accommodate the needs of the deaf and hard of hearing (and other disabilities). I can relate to Karen's disbelief and frustration so well because I've been there. I cannot tell you how many times I've stared and cried at the phone because someone didn't have the time or patience to have a simple conversation with me. I, too, struggle at drive-through windows but not as badly as I used to before my cochlear implants. I used to give my order at the speaker and then just drive up to the window. Most of the time I'd have to reorder again at the window but that was never a problem. If I had a friend or one of the kids with me, they would usually climb over me in the driver's seat to reach the speaker and make the order or interpret for me. My local Starbucks has a video order confirmation screen that shows what I ordered, how much it is, etc. I appreciate that. I (and many others) look forward to the day when drive thru windows, airport announcements, websites, & movies, etc. are captioned and easily accessible.

Our kids have always been my "ears" for me. We taught our children their manners at an early age and to speak clearly and articulately. Because Steve traveled a lot and wasn't always available, I depended on them to translate for me on the phone and in public so that I could "get the message."

Marissa works at the local Dairy Queen and usually works at the drive-thru window. People who are hearing impaired are the least problematic for her. She says that their deaf customers are so regular that they don't have to say anything! And they do drive up to the window to place their orders. Most of Marissa's coworkers know me and are very accommodating to me when I show up. When Marissa is working and I start ordering at the speaker (like I did today), I will usually hear, "Hi Mommy!" I love that. And she gives me free ice cream!

In other news, two friends who recently went bilateral have had their CI's activated and are doing wonderful! I got an email from Dixie, who was implanted in December, and she is off to a great start in an ear that has not been aided in four years. She says she is a happy camper with both ears hearing for the first time since her 20's (she is my age) and knows that each day will be better than the previous day. She has already noticed that sounds on her left side (new ear) are making it much easier for her with surround sound and hearing. You go, girl!

Michael Chorost, who wrote the book, Rebuilt, was activated this past week and describes his first two days here. He has waited almost two years for this! I am so thrilled and love reading about his descriptive experiences.

On the insurance front, I'm gaining a new appreciation for those who do insurance. It isn't fun and I'm finding that most agents (not you, Marcy) are clueless when it comes to cochlear implants! Some are saying that it is a pre-existing condition and won't cover my programming expenses and batteries. I've never been denied coverage for normal things like hearing tests, etc. because of my hearing loss. And some agents have very OLD information, saying cochlear implants are still in the experimental stage. And others know exactly what cochlear implants are and the needs surrounding them. I have spent a good portion of my week in several meetings, reading, reviewing, filling out forms, scanning needed documents, and emailing, etc. We need new health and dental insurance by the end of next week! Stay tuned for my next update!

Update coming soon. . .

I know, I know. . . I need to write in here! I compose entries in my head all the time but no one benefits from them unless I write them down. These last few weeks have been extremely busy trying to get in a new routine and get caught up around here. And I'm still behind. I should have resigned from my job a long time ago. The Christmas tree and stockings are still up and our Christmas cards still aren't sent out. . . *sigh. . .

We had Internet issues for over a week and I could not get on the Internet at home. I finally got that fixed with a new router (and am now the new IT department in this house!) Now I am trying to find health and dental insurance for our family since our COBRA benefits run out soon with Aetna. Since we are self employed, we stayed with them as long as we did because of my cochlear implant surgeries and Brad's medical issues. Trying to navigate and figure out the best insurance policy is challenging and has consumed quite a bit of my time. I know very little about this stuff because we always had a group policy where someone else took care of the details for us.

I filled out an online questionnaire last week and that was a HUGE mistake. The phone rings constantly and the caller ID shows one insurance company after another. And when they leave a voice message they talk too fast, making it almost impossible for me understand them or for the CapTel phone to get the captions. When that happens, they get crossed off my list. (It would be nice if people would make a conscious effort to talk slower and clearer on the phone, not just for the hearing impaired but for everyone.) I have narrowed agents down to two people that I can deal with locally and have meetings with them this week. Any suggestions, recommendations, or ideas would be welcome!

More later. . . stay tuned!