Mom's Sermon as a Lay Speaker/March 1974

Thought I would share this today....

Mom's Sermon/March 1974

The following is an excerpt from a sermon that my mother gave during Lent as a lay speaker in March of 1974. She gave this soul searching speech at Centerville United Methodist Church in Centerville, Ohio where I grew up. I would have been 16 years old at that time and wore hearing aids.  Mom spoke about what her faith meant to her and how it made a difference in her life. During her college years, she was a William Danforth fellowship delegate and spent some time with other young Christian people at a non-denominational retreat during the summer between her junior and senior year. She talked about meeting and talking with William Danforth at this leadership conference, who was the founder of the American Youth Foundation and how he inspired her and influenced her faith. He spent much of his life challenging young people to make the most of their lives, to give nothing less than their best. She talked about several low points in her faith and how God carried her through those difficult times. I won't copy the whole sermon but read on. . .

"The next few years included many high points--marriage, teaching, the arrival of our first child. Then life again presented a challenge; we learned that this first daughter, so dear to us, was deaf--not totally so, but to such a degree that she would never learn to speak normally or understand spoken language without a great deal of special training.

It isn't easy to face the fact that you have brought into the world a child with a built-in problem, and it isn't much easier when it happens again, six years later, with our youngest child. Our sense of helplessness eleven years ago was tempered, however, by the knowledge that even then this two-year old child had a great amount of determination and was a bright, healthy, outgoing child.

The years since then have far exceeded our expectations--with four children to make life interesting, there seems to be almost no limit to the wonderful and rewarding experiences. And if you know Laurie today, you know that it is almost impossible to think of her as handicapped. She is always coming up with something. For instance, just a few nights ago we went upstairs for a bedtime check and found her sound asleep, her arm dangling over the side of the bed, and a heavy alarm clock tied to her wrist. She doesn't like to be dependent on someone else to wake her up, and had come up with this idea: since she cannot hear the alarm ring, she had the clock fastened on her arm so tightly that when the alarm went off the vibration would wake her up. Incidently, it worked--though we discouraged her from going to bed every night with a clock tied onto her arm! With a child like that leading you, pushing you, and lighting the path, how could you help but realize God knows what he is doing!

There are times when she comes home after a hard day and asks, "Why did God make me like this? Why am I different? Why can't I hear like other people?" But I seldom need to answer, as she invariably comes up with a smile and a hug and says, "I don't really care, because I'm so lucky!"

Although we know she faces some trying times, it is encouraging to know that she accepts herself, and has an awareness of and trust in God. With that kind of support, surely she will have strength to carry her through many difficulties. I think she and William Danforth would have gotten along well, for it seems that all she needs is a good challenge and she is off and running. So many times it has been she giving me courage and inspiration, rather than the other way around.

No parent would wish this kind of stumbling block for their child, and there have been many times when I wished it were not so. But I know that her presence has given our lives an added dimension, and that out of this situation have come moments of joy we might not have known otherwise; for me, perhaps, it has resulted in a greater measure of patience."
~Betty Royer/March 1974

Thinking of you, Mom, today and always.  I love and miss you.
Laurie 10/10/11

A Tsunami Experience and CI Moment

Questions for the deaf and hearing impaired:

• Are you prepared for emergencies and major alerts when traveling, especially when it comes to hotel accommodations?
• Do you let airline personnel and agents know that you would appreciate alerts for boarding times, gate changes, delays, etc.?
• When checking into a hotel, do you request an ADA kit and let the staff know that you may need special assistance or notifications during emergencies?

When I travel alone through airports and stay at hotels, I am not afraid to let others know that I might miss a message and would appreciate some personal attention. I do this for two reasons…for my own safety and to increase awareness about the needs for the deaf and hard of hearing.  Even though I can hear with my cochlear implants, I usually make sure I ask for assistance, especially when I travel alone. I am still deaf when I am not wearing my cochlear implant processors. I turn them off when I fly (why waste batteries on engine noises) and at night.

My husband and I recently traveled to Hawai’i for business and were staying at the Marriott Waikiki Beach Resort on the O’ahu Island. Our room was on the 27th floor overlooking the Pacific Ocean right near the beach. Last Thursday evening, we had just gone to bed and had turned off the light after a long day. We were planning to get up early the next morning to tour Pearl Harbor and do some sightseeing. I had turned off my “ears” and was doing some reading. We were first alerted to pending danger around 9:22 p.m. by my friend, Evelyn, when she sent me a text message asking if we were okay. And a few more text messages and Facebook alerts came in from other friends asking the same question because they knew we were in Hawai’i. Just as I turned to Steve in confusion, he immediately sat up in bed and giving me the impression he was listening to something. He was hearing announcements and instructions coming through the hotel intercom.  It was difficult for him to understand what was being said because the intercom system kept making crackling noises. (There is no way I would have been able to make out the words even with my cochlear implants on.)  We immediately turned on the TV where we found out about the 9.0 magnitude Japan earthquake. We were shocked to see the massive devastation that had just happened and learned that the earthquake triggered a powerful tsunami that was headed for Hawai’i in a few hours! Steve also received a phone call from a colleague at Hawai’i Electric offering us his home if we needed to evacuate.

Hawaiians are very service oriented and hospitable people.  The hotel staff was well prepared and promised to keep their guests informed on any new developments through the night. There were signs by the elevator in English and Japanese.  We were assured that we were safe as long as we stayed above the third floor. Our hotel was built like a fortress and the staff was well prepared for situations like this.  The tsunami was scheduled to come ashore to the Hawaiian Islands around 3:30 a.m. I immediately jumped out of bed, put my cochlear implants back on and packed my suitcase in case we had to evacuate in a hurry!

We heard tsunami sirens all night long (a new CI sound for me!). We also heard the police on the streets below us telling everyone to get off the beaches and go inland. Needless to say, it was a long night of warnings and we got very little sleep. Steve and I took turns watching the TV and dozing off. We even went down to the deck on the 3rd floor around 3 a.m. to see what was going on. The conference rooms were turned into evacuation centers and there were TV monitors set up everywhere. There was a church next to the hotel and I was comforted when I saw the simple cross on top of the roof. I knew then that we would be okay, no matter what happened. I was reminded of Deuteronomy 31:8 that tells us that "the Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged."  Whenever I am anxious, nervous, upset, or scared, this verse reminds me that the Lord has already gone before me, preparing the way for protection and peace.

It was actually a beautiful and eerie night. The tsunami waves did come ashore and came over the break walls, flooding the beaches and streets, stopping short of the high rise hotels, including ours.  Most of the waves were around four feet but some beaches on the islands reported eight foot waves.  When the sun came up the next morning, the streets and hotel decks were soaking wet. The sky was a beautiful blue color with a few white clouds.  The water was also blue, crystal clear and sparkling in the sunlight. There were sailboats back on the water and a few surfers taking advantage of the big waves. As we looked out at the beach, we could see the seaweed that had washed ashore.

I am so thankful for text messaging, email, Facebook and modern technology. Otherwise, we would not have gotten the messages about the tsunami so quickly. Because Steve is hearing, I don’t usually ask for special accommodations because he takes good care of me.  In the future, though, I think it would be a good idea to make the hotel staff aware that I have a hearing loss in case of emergency.   My husband may not always be in the room with me if I need to be alerted.

While our experience was mild compared to the tragic events and loss of life and property in Japan, we never dreamed in our lifetime that we would experience a tsunami warning.  This was a reminder to me to always be prepared in case of emergency, no matter what the situation is.

How Would You Encourage a Teenager With Hearing Loss?

Ten years ago I was a college student struggling to hear and take notes in class. Today I returned to my Alma Mater, the University of Tennessee, to speak to graduate students in a Cochlear Implant class. Never in my wildest dreams did I imagine that I would be a CI recipient OR be speaking in front of a class at a university. A big thank you (again!) goes to Cochlear for making the technology available so others can hear!

My presentation went better than expected and the students were very attentive and had some good questions for me. Which made it easier to share things that I would not have originally presented or thought of. I shared my hearing journey with them, which included discussing some difficult times during my teenage years. One of the questions they asked me was, "How would you encourage a teenager today with a hearing loss who is depressed, isolated, or doesn't want to wear a hearing aid or work with a cochlear implant?" I had to think about that for a minute and said that was a hard one to answer. And have been pondering it ever since.

When I was a teenager in the 60's and 70's, life was hard. Peer pressure reared its ugly head and I felt very isolated. Had very few friends because I talked funny and couldn't hear very well. Was labeled a "snob" many times because I did not respond when my name was called. I felt suicidal at times.  I couldn't talk on the phone and if I wanted to communicate with someone, I had to do it by snail mail or in person. I just wanted someone to listen to me and validate my feelings. And just wanted to have a sense of belonging. Thankfully, I had a wonderful family and support system at home. But not every teenager has that in today's world.

Today, the Internet & technology has made it possible for teenagers to have immediate results and communication skills, something many of us did not have as teenagers. The social media has broken down those barriers of communication and make it possible for the deaf & hard of hearing to connect with the outside world. But instant results when it comes to hearing & understanding with a hearing aid or cochlear implant is a different story. The results are not always immediate and take time.  Working with a hearing aid or cochlear implant is like any other tool and have a learning curve associated with them. Practice and patience is the key to success.

I feel that increased independence leads to a richer life with a purpose. Many of us CI recipients can attest to that. I would encourage parents, audiologists, & medical professionals to learn how to encourage them in a positive way.  They need to know that they are special just the way they are and have a purpose in life. Listen to them, love them, embrace them, & plant seeds of hope so that they can make a difference in their world and for those around them. And pray for them, too. When you do that for them, you give them the power & courage to live a confident, healthy, & positive life.

How would you answer the question? Looking forward to hearing your answers!

A Cochlear Implant Journey Video

This is a must see video! It describes the hearing loss journey of Josh and Sam Swiller, their cochlear implant surgery, activation, therapy, and life afterwards perfectly....and is almost identical to my hearing loss experience and results. It is captioned, too!

What a gift technology has given to the deaf and hard of hearing....Enjoy!



Soundproof Trailer created by filmmaker Rebecca Haimowitz.

A Lotte Update

After I sent a response to Lotte's father about "the experiment," I received the following response. Lotte's father has given me permission to share it:

"Hi Laurie,

Thanks for that experiment. And a thorough job you did...Was great to hear how you perceived the sound. "Distant and nasal" is a description we can use. With this we will try to have Lotte to wear it on the ear. With the battery still on the shoulder perhaps. We'll do some experimenting ourself. Thinking of it, the fact that the BTE is not just hanging on the ear, but also hugging the bone of the head, might be a reason for a different sound. Like we, and you said, Lotte will decide for herself. And with her being used to the current sound, changing might not be the most popular thing to do. But we'll try in the weekend. I don't think the distance between face and microphone makes the difference, but who knows. Lately Lotte has been talking louder. We feel that it has to do with the vacation. Being outside for so much (weather in Holland and Italy was great) might require more sound in order for her to hear her voice in the same way. Another factor might be the fact she has been excited 24/7 during the holiday... Happy bunny...

By the way... Have you found ways that you benefited from it? Again, thanks for your help. It has been very informative."

Lots of love, Onno & Marieke B----, on behalf of Lotte

I wrote back and said this:

As far as benefitting from having the processors on my shoulders, I can see where it might help in certain situations, like if I was in surgery or in bed for an extended period of time, doing an outdoor activity like boating, skiing, or something active where I would not want to lose my processors if they fell off....

And later, another response:

"This weekend we tried it on the ears. With the batteries on the back, and with the complete BTE on the ear. Lotte doesn't mind, but still prefers them on the shoulder. So do we.... after she came back with a broken BTE. It had fallen off, and 2 of the 3 little pins of the bayonet-closing thingy (how on earth do you call that) broke, making it impossible to close it. Well, it's on tape now. Duct tape will be the next move..Anyway, we put it higher on the shoulder than before... not much change though..."

Poor Lotte, she now has a broken processor after trying it on her ear...I feel bad for her. Hopefully she will get a replacement processor soon!

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!

A Must Read....Jennifer's Post

My friend, Jennifer, posted a very moving and poignant post yesterday.....it is a must read! She shares her bilateral cochlear implant journey from her heart at SURROUND SOUND...

Part I - The People I Meet - 2009 HLAA Convention Pictures

The 2009 HLAA Convention in Nashville has come and gone but the memories remain.....here are some pictures for you to enjoy!

HLA of Knoxville Chapter

This is my local chapter (click on the above name to access our Chapter blog) and I was so pleased that some of our members were able to come and experience this convention. Every time I saw one of them, they looked like they were having a great time!

Mark Brogan and I

I am so PROUD of Mark! He shared his story at the Opening Night Ceremony about how he lost his hearing in both ears as a result of a suicide bomber in Iraq three years ago. When he first started coming to our meetings in Knoxville, I knew that there was something special about him. His story is incredible and he has been through a lot. His wife, Sunny, is his biggest cheerleader and they will be on the cover of the HLAA magazine in the near future.

Sam Spritzer & I

Sam is a very special online friend. We met each other via my blog in April of 2007 when he was starting his cochlear implant journey. We've kept in touch regularly online and he has a blog HERE. He had recently had scare last week with a heart attack and is so thankful to be alive. This picture was taken at the Nashville airport where I was volunteering and was our first meeting in person. I knew who he was right away when he started walking towards me with his smile!

Me with Judy Martin
Judy is the President of a HLAA Chapter in Florida. We've kept in touch online for quite some time. She has been a great help answering my questions and giving me support for the Knoxville HLA Chapter. It was fun to finally meet her in person!

Tracey & Susan
These two beautiful gals were my roomates this year. This was Tracey's first convention and she was very interested in the seminars and exhibits. Susan is the first person that I met with a cochlear implant and was the one who was so supportive and helpful when I started my CI journey. She has a blog HERE about her CI Journey. Both of these gals work as nurses in my ENT/CI doctor's office, so I was well taken care of!
Debbie & Steve Bottles
This wonderful couple are a sister and brother team from Idaho. I met them online in the HLAA CI Monday night chat and they are just as charming as they look! They both have cochlear implants and received them together at the same time a few years ago. And doing great! They have a blog as well at (Insert Blog here)
GIRLFRIENDS! (Click on their names to access their blogs)
Left to right: Me, Abbie, Tina, and Jennifer
I met all three of these gals via blogging. Abbie and Jennifer were my roomates last year and are great fun. Joining us in this picture for the first time is Tina from Washington, D.C. who writes about her young son's cochlear implant journey. Tina is a GREAT advocate for her little boy and is doing everything she can for him and other children with hearing loss. Abbie was the Convention blogger this year and you can access the Convention Blog HERE. Jennifer is the current President of the Nashville HLAA Chapter and had a beautiful welcome speech on Opening night. Sir Tom, Me, and Big Bear
I met these two men last year in Reno and and also online in the Monday Night CI Chat room. They both have cochlear implants (Tom has one and Big Bear has two.) Sir Tom and his wife, Judy, have been guests in our home twice this past year and are such a great couple. They brought their Wii the last time they came and we played games during their whole visit! Big Bear (Wayne) is has been part of HLAA for over 20 years and lives in New Jersey, working for Sprint CapTel.
My Brother, Doug!
I was SO excited when my brother decided at the last minute to come to the Convention for one day! Doug and I are the only ones in our family with a hearing loss. He came specifically for the Hair Cell Regeneration Symposium on Friday, attended some workshops and visited the exhibit hall. He would have liked to have stayed another day but was around long enough to experience what HLAA has to offer and meet some HLAA friends.
Just me and my Hubby!
Last, but not least, is a picture of my other half! The Convention was close enough to home that he was able to come over for one day. It was such fun to introduce him to the Convention experience and share how much it means to me. He also brought a friend from church, who wanted to get some information about putting in a loop system.

I don't think I stopped smiling for days! My face hurt from all the smiling, laughing, and talking we all did! But it was such a wonderful and uplifting time. I have more pictures to share but will save them for another post since it is challenging to upload so many at one time. Until then, enjoy!

The Wellspring...: Ear number two!

Below is another blog that I like to read. Some of it is hearing related but mostly concentrates on their family and pictures. This couple adopted their daughter from Quito (I think) and she went bilateral today! Click here to see more! The Wellspring...: Ear number two!

Another Friend Goes Bilateral!

Another friend has taken the step to bilateral hearing! I met Becky a few months ago because she had many questions about having two cochlear implants versus one. She traveled to Nashville on Sunday from Knoxville with some members of her familly and had her second CI surgery yesterday! And is doing amazingly well. Check out her blog here and give her some encouragement! She will be activated in three weeks on June 9th!

A Very Special Walk

Please CLICK HERE to see my Walk4Hearing Page!

On Saturday, May 16th,I'll be participating in the Walk4Hearing in Chattanooga on the beautiful and colorful Riverwalk at the Chattanooga State Technical Community College in Chattanooga, TN. This very special walk is a fund-raiser to support the Hearing Loss Association of America. I am walking this very special because hearing loss is a public health issue that is third in line behind heart disease and arthritis. If you have been reading this blog for the last few years, you are familiar with my "Dance With Sound." I have lived with a severe/profound hearing loss since the age of 2. I joined HLAA when I started my cochlear implant journey and haven't looked back since!

HLAA is a lifeline for those who are affected by hearing loss. I would not be where I am in my "dance" if it wasn't for the support of family, friends, and HLAA. I've been to two HLAA conventions in the last two years which have been life changing for me. For I have found my "people" because they, too, know the trials and struggles of living with a hearing loss. Through HLAA I have made many long lasting friendships and gained a wealth of information related to hearing loss.

The Walk4Hearing goal is to increase awareness about the causes and consequences of hearing loss. By raising funds, HLAA can provide information and supprt for people with hearing loss and make a difference. It is estimated that 31 million Americans are affected by hearing loss and 2 million of them are deaf. Many of them lack the much needed information and support that they need as they struggle to fit in the hearing world. HLAA advocates for those with hearing loss to enable persons to be all they can be and live full and productive lives.

Someone asked me a few weeks ago that if I could name the one person that has made a difference in my life, who would it be and why. I've been blessed with a great support system throughout my life with family, friends, teachers, mentors, coworkers, health professionals, and even strangers who were understanding and willing enough to help me when I couldn't hear or "get the message." But the one person that has influenced my life the most would be my mother. She was such a great advocate for me and my younger brother, Doug, and did everything in her power to help us be the successful persons we are today in spite of our hearing loss. And because of her love and dedication, I am now in a position through HLAA to "pay it forward" and advocate for others with hearing loss who may not have the support system they need to succeed. Mom lost her battle to cancer 17 years ago on April 8th but is still very much a part of my life today. So, on May 16th, I will honor and remember her by wearing her picture on my t-shirt as I walk and advocate for hearing loss.

My team on the Walk4Hearing page (Chattanooga, TN) is the Knoxville Chapter of HLAA. Our team goal is to raise $1,000 and I have set a personal goal of raising $500.00. I hope to exceed both of those goals. I am not used to being on the receiving end of fund-raising efforts and do not like to ask for money from friends & family, especially during these difficult financial times. But this is for a good cause and I know that some of you will be glad to help! Your donation in any amount will be greatly appreciated and you can give anonymously if you wish.

If you would like to make a donation by personal check, please leave a comment and I will be glad to give you my email & address information so you can mail your contribution to me. All checks should be made out to Walk4Hearing. Donations are tax deductible and you will receive an acknowledgement from HLAA for your tax records.

Your donation will mean so much to me! Thank you from the bottom of my heart for your love and support for hearing loss.

Nerve Deafness

I originally wrote this post in my "Book Blog" (which I rarely write in anymore) on August 20, 2005 before my first cochlear implant surgery and thought it was worth repeating.

Nerve Deafness

When I was diagnosed with my hearing loss, my parents were told that I had "nerve deafness." Lately that term has puzzled me because I can hear sounds with the help of hearing aids. How can something be wrong with my "nerve" if I can hear voices and sounds around me? I wear the strongest aids on the market and currently wear Widex digital hearing aids. I've assumed that the doctors, audiologists, and speech therapists that I've had knew what they were talking about and just accepted that diagnosis. I've grown up believing that there was no cure for nerve deafness and never really thought there was anything else out there that could help me except my hearing aids. But, that doesn't seem to be the case at all. "Nerve deafness" can be a major misnomer because it incorrectly implies that damage is to the auditory nerve and not the cilia (hair cells) in the cochlea, which is responsible for much of a person's hearing loss. In reality, the term "nerve deafness" has been around for the last fifty years or so. Until modern medicine, those of us who grew up in the 1950's and beyond are usually given this term if doctors could not find a cause of deafness. In another words, it was a "one name fits all."

I'm beginning to understand that there are several different types of hearing loss. One type is conductive, meaning that the sound comes into the ear but does not get to the cochlea or auditory nerve. That indicates that something is wrong with one or some of the bones in the middle ear. In most cases it is usually the stapes bone which has become stiff, calcified, or hardened and will not move. And when it is not moving, it is not transmitting the sound to the cochlea and auditory nerve. That is what is considered a conductive hearing loss. The cochlea and auditory nerve are usually in fine shape. I noticed on my papers from the doctor and insurance company that I have been diagnosed with sensorineural hearing loss. Which means the sound IS coming into my ear, gets through those three little bones of the middle ear and gets transmitted to the cochlea. But it is not getting to the auditory nerve very well because there is a problem in the cochlea. The cilia (hair cells) in the cochlea are dead or the fluid in the cochlea isn't there or there is something else wrong in that part of the ear. This explains why so many people are labeled with "nerve deafness" because the sounds are REALLY coming into the ear but are not being transmitted like they should to the auditory nerve. That is why I had to do the balance test back in May to determine if I had any fluid in my ear. And I did! This is where the CI comes in. My implant is specially designed to mimic the functions of the human ear like natural hearing. There will be a 22 channel electrode inserted in my cochlea and it is specially designed to protect the delicate walls of the cochlea.

One might ask how a cochlear implant is different from a hearing aid. Hearing aids only amplify sound. No matter how loud the sound the hearing aid produces, it does not provide clarity. That is why I've had so much trouble with amplifiers, speakerphones, loud noises and loud people. I've always tried to explain that "louder" is not always better. I have a severe to profound hearing loss and my ears cannot process the information that they are receiving because sound is still going through the damaged part. A cochlear implant does not make sounds louder. Instead, it bypasses the damaged part of the ear and sends the sound directly to the auditory (hearing) nerve. How cool is that???!!!

I am realizing that some people who qualify for a CI think might that there is no point in pursuing it any further because they have "nerve deafness." But the testing that I've had done has actually shown that I'm missing hair cells in my cochlea. If Mom was still here, I'm sure she would be pleased and tickled pink to know that I haven't given up on the possibility of being able to hear the sounds that have been denied to me all of my life. I have thought about her a lot lately and wished she was here to share this experience with me. I hope to be able to help other people like Susan has helped me. We all need someone to give us that "little push" and hold our hand during the journey. God is so good. He is bigger than any obstacle in my path and knows exactly what I need at the right time. His timing is so perfect!

Veterans With Hearing Loss

Please check out this news article. . . this featured veteran is a member of my HLA of Knoxville Chapter and is a wonderful young man. Mark Brogan is helping HLAA reach out to veterans nationwide who have lost their hearing as a result of their military service.

HLAA is offering a Complimentary Membership in HLAA for Vets of OIF and OEF and a free HLAA Convention 2009 Registration to Nashville. Mark and I have been working with HLAA on this project. For more information, go to the Hearing Loss Association of America website and click on the flag on the right side.

I'm so proud of Mark and he will be a great advocate!

UT Department of Audiology & Speech Department Saved!

When the University of Tennessee announced the pending closure of the Department of Audiology & Speech this past June, I went right to work advocating for the group for several months. There were parallel efforts by many other people in the community and nationwide to help save this nationally recognized program. Much time was spent on my part for several months in 2008 getting several state politicians to weigh in, writing newspaper articles, and a huge letter/email writing campaign. I also worked with Larry Silverstein, whose father was responsible for starting the program 55 years ago. The result was a reversal of the decision by the UT Board of Trustees. One should never underestimate the power of the people, the media & the written word, and grass roots advocacy! Below is an article written by Mr. Silverstien that was in the Knoxville News Sentinel several weeks ago thanking everyone involved for helping to save the department. There are still some challenges ahead for the Department of Audiology & Speech but it is good to know that the reversal of this decision will have a huge impact for thousands of children, adults, and students forever.

Thanks expressed for helping save UT unit

By Larry Silverstein
Sunday, December 14, 2008

On behalf of the thousands of children and adults whose access to essential speech and hearing services has now been preserved, and the UT students who will become professionally trained therapists, I offer thanks to all who played an important role in making this happen.

The Friends of the University of Tennessee-Knoxville Department of Audiology and Speech Pathology are very pleased that the UT Board of Trustees has approved a proposal for a transition plan towards a July 1, 2009, administrative takeover of the department by the UT Health Science Center in Memphis.

This will keep intact the nationally recognized department and its entire clinical program, and it comes four and a half months after a hasty and ill-advised proposal by the UT administration to eliminate it.

The proposal, contemplated to help reduce the UT budget, was initiated by the dean of the College of Arts and Sciences and approved by the acting chancellor, acting provost and President John Petersen. This unexpected action was taken without consultation with the department, the UT Faculty Senate or anyone in the community.

The announcement was made public on June 4, just prior to the Board of Trustees Executive Committee meeting in Nashville on June 6 and on a fast track toward approval by the full UT Board of Trustees on June 20.

Thanks to the unanimous support of the local media, word spread quickly throughout the community and a grass-roots campaign was begun to save the program. Letters, phone calls, personal appeals and e-mails by the hundreds poured in to the board of trustees, Petersen and Gov. Phil Bredesen.

A law office conference room in Nashville on June 6 was filled with UT students, faculty and other concerned people who took their case directly to the board of trustees. A large rally of supporters was held at the Scottish Rite Temple on June 9.

On June 11, UT announced that some aspects of the clinical program would be retained, due to the provisions of a 99-year lease agreement from 1958 that required the Hearing and Speech Center be operated by the university.

The administration did not indicate which clinical programs would continue and planned to entirely phase out over a two-year period the department and all teaching, training and research functions. This amended proposal was not acceptable and resulted in a campus protest march on June 13.

Under considerable pressure from the community and the UT Faculty Senate, on June 17, the administration announced that its proposal would be deferred until the Oct. 24 board meeting. This was viewed as only a temporary reprieve, based on statements made at the June 20 board meeting.

After members of the board received well over 1,000 contacts by individuals and professional organizations from all over the country, the administration made an alternative proposal to transfer administration and funding from the UT College of Arts and Sciences to the UT Health Science Center in Memphis.

We owe our sincere gratitude to the incredible community support that made this resolution possible. Because of the 55-year history of excellent service to the East Tennessee community, many people - including students, faculty, clients, alumni, local and state public officials, civic organizations, and members of the audiology and speech pathology profession - came forward to share their personal experiences and grave concerns with the UT administration and board, Bredesen and members of the Tennessee Legislature.

Those voices of concern and outrage were given great support and publicity by the Knoxville media, particularly by the News Sentinel, which reported each and every event, and were heard loud and clear by the board and administration.

Our campaign has demonstrated the media can educate and motivate the public to successfully challenge policies that would have a negative impact on our community.

We are grateful that East Tennesseeans will continue to receive the essential speech and hearing services that they need and deserve and that UT will continue to train and educate the next generation of professionals who will provide these services.

Thanks to the enthusiastic support of the UT Health Science Center, the board of trustees, the local print and television media and all in the community whose support helped make this a reality.

Larry Silverstein, an attorney, is the son of the late Dr. Bernie Silverstein, the founding director of the Hearing and Speech Center in 1953 and a UT professor until l996. His e-mail address is Larrys55@aol.com.

(Laurie's Note: Copied with permission from Larry Silverstein)

A Letter From My Father - Part 3

My father's letter continues. . .

Laurie's mother should be given the majority of the credit for ensuring Laurie's speech training and for spending hours and hours listening to her and her problems and for encouraging her to "never give up" on being able to "get along" in a hearing world.

She taught Laurie how to be organized and to get tasks done in a timely manner. For example, all through middle school & high school, Laurie would do her homework as soon as she got home from school. It was always done before supper so she could watch television afterwards. She got herself up each morning with a light timer, got dressed for school and was always ready when it was time to catch the bus. (Mom usually stood by the window listening for the bus for me and made sure I got out the door in time.)

The best thing that happened to Laurie was meeting her husband, Steve, when she started her freshman year at Wright State University (Dayton, Ohio) in 1975. They hit it off together! And he understood Laurie's hearing loss and was patient in dealing with it. They became engaged by March 1976 and were married in November 1976.

Dad's Recollections of Laurie:
1. She was always good with her two brothers and sister. (Most of the time. :) Kathy and I had some nasty fights! But we are best friends now!)
2. She listened to my wife & I about doing things.
3. She was always loving & kind.
4. Others liked to be around her. She had lots of friends & cousins who enjoyed being in her company.
5. She was always neat in dress and appearance.
6. She was a good babysitter.
7. She enjoyed watching TV and listening to music with earphones or a headset. (I also listened to LP albums with the volume turned all the way up in my room.)
8. She surprised her mother and I in many ways in being able to hear and communicate with people. (I found other ways to compensate in order to "get the message" or faked it when I didn't really understand.)
9. Her teachers were always impressed on how well she could learn, even with a hearing disability.
10. She promised her mother that she would get her college degree when she became engaged and wanted to be married. (She did!) (After transferring from four different colleges, I finally graduated from the University of Tennessee with my Finance degree in December 2003.)

"The End" by Dad, Edwin J. Royer

Thanks, Dad. I love you. Laurie

It's SNOWING. . . .

. . .in West Virginia! Apparently it is snowing back home in Tennessee, too. I've been traveling in Morgantown, WV with my husband on business this week. We rented a car and drove up here Sunday evening. We stopped in Wytheville, VA for dinner and met up with our son, Brad, and his sweet girlfriend, Caitlyn. They both go to Virginia Tech and we were glad to see them. West Virginia is a beautiful state and the drive here was very pleasant. It was 15 degrees on Monday morning we woke up and we were COLD! I've worn my cuddle duds (long underwear) every day this week just to stay warm. (I also have a huggy hubby to keep me warm when he isn't busy working!) We've had three days of snow and flurries and have enjoyed every bit of it since we don't see that much snow down South.

We stayed at the Hotel Morgan, a beautiful historic hotel in Downtown Morgantown that has been recently renovated. The downtown area has unique shops, restaurants, & businesses. The first evening we were here we ate dinner at Maxwell's, which is a local favorite. Steve and I had a very nice Valentine dinner last night at the restaurant on the top floor where we could see the whole city of Morgantown & West Virginia University. Yesterday a friend took me to an old glass factory that has been turned into a mall filled with antiques, shops, and restaurant. Cute!

Our room was very nice with a king sized bed, chair & ottoman, desk, TV, and all. What is interesting is that we had a handicapped room, which is set up for someone with a wheelchair. The doorways were wider than normal. The bathroom was very spacious and had all the handrails and safety items that a physically handicapped person would need. The sink was not in the bathroom but was in the main area so that a wheelchair could fit under it. There were two peepholes on the door, one for a regular person and one for the handicapped. But, there was one small problem. . . the TV had NO close captioning! There was no menu or CC option anywhere on the TV. It must have been an older TV that wasn't up to date with the close captioning requirement. This "missed detail" was an example of how the normal hearing population try to accommodate the disabled but forget about those who are hearing impaired. I also forgot to mention that the room is on the THIRD floor. Wouldn't a physically disabled person need a room on the first floor? If there was a fire or emergency and the elevators weren't working, how would a physically disabled person get out? I'd be curious to know if the hotel has a plan to "Go to Room 306 in case of emergency."

Anyway, I stopped at the front desk and explained to them that I was hearing impaired. I asked if there was some way they could switch out our TV with another one in the hotel that had close captioning on it. There was no response for a while so I changed into my exercise clothes and went down to the lower level to the fitness room. There was a TV in there that I could watch while I rode on the bike AND IT HAD CLOSE CAPTIONING!!!! After I got done exercising, I stopped at the front desk again and asked about the TV, just in case I missed them while I was downstairs. They said they couldn't find one and offered to move us to a different room. We were already settled with our bags and all and didn't want to change but I did tell the clerk that the TV in the fitness room had close captioning. The clerk told me that I was welcome to take the TV from the basement to my room if I wanted to. I thanked him but said that I couldn't do it (actually I cannot lift anything more than 20 pounds for health reasons!). Later, I heard a knock on the door and it was the guy from the front desk bringing me the TV from the fitness room! He switched it out in a matter of minutes with no problems. Even the remote control that was in the room worked with it, but I still had to push the menu buttons on the TV to access the CC. I really appreciated the extra service and told the guy that he deserved some points for going the "extra mile" for me (but he lost some when he told me to move the TV myself)!

Yes, I can hear with my implants but there are times when we appreciate the close captioning feature while watching TV. If Steve is talking on the phone, I can mute the TV and still understand what is going on. Or when I have curlers in my hair in the mornings because I cannot wear my processors. I like to watch the morning news and weather while getting dressed. We're so used to having the close captioning when the TV is on that we miss it when it isn't there. Also, the voice and sound quality from TV is not always that great and is hard to understand sometimes without a little help.

We've had a busy week working with one of our clients but I enjoy traveling with Steve. And we are thrilled that we get to spend Valentine's Day TOGETHER! That doesn't always happen since he is on the road a lot. Happy Valentine's Day to all of you who read this!

Later. . .As we were driving home, I looked at our receipt for the hotel. Steve had checked a box for "hearing impaired" when he made the reservation. I asked him about it and he said "Yea, the fire alarm on the ceiling was set up to have a flashing light in case of fire." So, I guess it was "a hearing impaired room" after all.

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!

TV Interview

Tomorrow (November 13th) starting at 3:55 p.m. on Channel 10, I will be gracing the TV sets in the Knoxville, TN viewing area for the 4 o'clock Style show on the news. WBIR-TV contacted me for an interview after seeing my article in the paper in August and wanted to do a segment on women overcoming disabilities and hardship. I struggled with whether or not I should tell anyone about the show but I knew some people would feel bad if they missed it. So, I thought you would be interested. I have no idea how the interview turned out but the reporter assured me that she would do her best! It is a story about my hearing loss journey and how I hope to help others to succeed.

If you are unable to see it or live out of the area, you can view the video here after it airs. Enjoy!

Two Year CI Anniversary

Today is the two year anniversary of my first CI activation. My audiogram has gone from this to this to THIS! (see below and click on picture to enlarge)




I know I've said this before and will say it again - I never ever dreamed that I would hear this well in my lifetime - EVER. I've gone from a severe/profound hearing loss to a mild hearing loss with one CI, to almost normal hearing with both CI's. I have truly experienced a miracle because of medical technology and only God could make this happen. Nothing is impossible with God - NOTHING! So, when you think that God doesn't care or hear your prayers, just remember that He is always moving forward ahead of you and making plans for something better, even if it takes 40+ years. And for that, I am forever grateful! Alleluia, Amen!

A Very Special Announcement

I just checked the Governor of Tennessee's website (I've been checking it every day) and discovered that "the announcement" has finally been made for his recent appointments for various boards in the State of Tennessee. Go here and scroll about halfway down to the Tennessee Council for the Deaf and Hard of Hearing. And you will see my name! This will probably be in the local newspaper here as well as several others. I also have a nice plaque and letter from Governor Bredesen.

I have known about this appointment since April but the Governor had the first rights to make the press announcement. This appointment as a citizen representative is for three years and I will travel to Nashville four times a year (all expenses paid) to sit on a council. I'm not sure of all of my responsibilities yet but I do know that I will be an advocate for the Deaf and Hard of Hearing for East Tennessee.

Some of you are probably thinking that I don't need to add one more thing to my schedule. But I cannot pass up this wonderful opportunity. Now that I can hear well with two cochlear implants, this is a new chapter in my life. I know first hand what it is like to live with a hearing loss and the trials and frustrations that go along with not being able to "get the message" and miss out on so many things. I would not be where I am today without the wonderful support of my family, friends, coworkers, teachers, and other people who have been a part of my life all these years. Plus, our children are getting older and "leaving the nest," which will allow me to spend time helping others. So, I hope to be a voice for others who cannot hear and "pay it forward," like others have done for me in the past.

My first meeting is next month on August 24th. I'll give a small report on my trip to the HLAA conference in Oklahoma City. I also have been asked by the director of the Disabilities Office at the University of Tennessee to be a mentor for incoming deaf and hard of hearing students. While I'm in Nashville, I plan to spend some time with Jennifer and my Nashville relatives. It's a three hour drive from here and will be well worth it!