My Story

Hearing Elmo welcomes contributions by guest writers! Thank you to Tywanna for her contribution today!

By guest writer Tywanna

My Story….

I was the first born in a family of three children. As a child and later a teenager, I attended “mainstream” schools. I did what all kids do – play, get in trouble, argue with siblings, visit grandparents, take part in church activities, etc.

I first noticed the decline of my hearing while attending college. People would call my name and I wouldn’t hear them. Early on I thought it was because they were calling me from far away. At some point, I began to turn the television up louder. Again, I thought it was someone/something else. Maybe the television program was being broadcasted at a low volume.

I now wonder if people around me noticed my hearing loss before I did.

While shopping with a college roommate, I took a hearing test while in the mall. The conclusion was I had some hearing loss. I don’t recall asking to what degree or which ear. Maybe I was unwilling to accept the results. Hearing loss? Isn’t that for the elderly? What young adult asks for hearing aids? Could I start a new fashion statement on campus? Were hearing aids the “in” thing?

I must have placed the results of the hearing test in the back of my mind. Similar to placing the skillet on the back burner while the remainder of your dinner is cooking. We often place items on the back burner or in the back of the closet until we’re ready to retrieve them.

While attending college, I worked part-time and also found time to enjoy activities around campus. I made it through college just fine. I attended classes, studied hard and was successful. Maybe that one hearing test was wrong? Maybe my hearing loss wasn’t that bad. Who knows what I was thinking. I was a young adult enjoying life and having a good time.

After college I began working full-time. I was still young. I had my own apartment, my own car, and money in my pocket. What more could I ask for? Life was good.

As the years went by the hearing loss became progressively worse. I sought the help of a few more doctors and the results were the same – you’re losing your hearing. The doctors would say let’s explore hearing aids. My mind would think – WHAT? Here they go again talking about hearing loss at such a young age. I was not ready to explore that option. I wanted to know why I was losing my hearing. There must be an answer. Maybe there’s a cure. Things just don’t happen for any reason. If advances in science and technology can send a man to the moon, there must be an answer for hearing loss.

While I was searching for an answer, my hearing and understanding did not improve.

I the late 1990’s I located a doctor who tested my hearing again. This time I was open to talk about hearing aids. The audiologist showed me various models and discussed which of those would be better for me. She suggested a behind the ear (BTE) hearing aid for both ears. Again I was thinking – WHAT? At least this time the entrance door to my mind was unlocked and open for business. I recall asking could I get small hearing aids that go in the canal. She politely explained due to the severity of my lost, those would not benefit me.

I soon began experiencing life with my first set of hearing aids. They were brown and BTE. They came with a small discreet pouch and with a remote. Wow! I wore them on an as needed basis. I still felt in some situations I was doing pretty good. Little did I know I was learning to adapt. Survival is based on adaptability. My first set of hearing aids lasted for about 5 (five) years.

I went a few years without hearing aids. I was working full-time and had completed my Master’s degree. I began traveling for work and I felt I was communicating with people fairly well. I was able to watch and understand television. I was an avid moviegoer. I spent time chatting with family and friends on the telephone.

At some point my hearing took another decline. I could no longer understand people without visual cues. Television was just noise. I had to use closed caption to understand what was being said. I slowly began to stray away from the telephone. My life as I had previously known it was changing.

Their came a time when I realized that I needed another set of hearing aids. A BTE set can cost up to $5,000, and they are not covered under the medical insurance plan. I located a great doctor who performed a thorough evaluation. After many tests – MRI, CAT Scan, needle poking, etc. There was still no answer. All these years of medical advancements and no answer! What’s happening to all the funding that goes toward medical research? The doctor’s best guess was genetics. How can this be genetic if I’m the only person in the family with hearing loss? The ENT explained that I was almost deaf. I did not expect this. The tears began to flow like a stream. I couldn’t help but think why me?

Many days and nights my heart was heavy with sadness. My eyes were sore due to regular crying. My head ached due to constant thinking of hearing loss. Was I a walking medical mystery?

When I received my second set of hearing aids, I wore them faithfully. I had many consultations with the audiologist. Each time our conversation would go something like this. Me – “Is this a good brand? They don’t seem to be working very well.” Audiologist – “Yes, you have one of the best. Just give them time.”

After two years and half years of the same conversation, I had had enough. I was angry and frustrated. I expressed my feelings to the ENT and audiologist. The ENT referred me to another specialist. He stated he referred his complex cases to this other doctor. I felt somewhat relieved.

With my new doctor and audiologist, I began another chapter in life. My cochlear implant journey…..

Self-Actualization

I had to make a choice. I could continue to be sad or I could continue living. I chose the later.

After reading so many stories of others, my heart began to lighten. Who was I to complain? I saw others who were worse off than myself. There were people without food and shelter. There were people who had overcome adversity in spite of multiple disabilities. There were people who lives were turned upside down. And there were people who experienced grief beyond imaginable.

The tears that used to run freely began to dry up. Who was I to question God? The medical answer I searched for was not forthcoming. I began to realize God made me this way for a reason. There is no such thing as chance or luck. Everything is designed according to his well-orchestrated plan. God does not make mistakes. I may not have a medical answer in this lifetime, but I was determined to keep moving forward.

I no longer cared what others thought; if they did not want to be my friend, who cares. I surely didn’t. It was their lost and not mine. If they were staring at my listening devices, that means they’re curious. Curiosity can be a good thing because it can imply a change in current thinking.

I’m beginning to learn one of my purposes in life – to share and educate others. I began to speak to others about hearing loss. The door to newfound friendships opened. I was beginning to meet people like me. The shyness of my disability that used to exist was fading. The woe is me complex disappeared. I learned to become proud and comfortable with the way God made me. I’m unique, different, head strong, and I’m me!

Some days I’m happy. We’re happy when things are going right. We’re happy when things are going our way. Happiness is based on circumstance. Most of the time I’m joyous. I have joy in spite of my circumstances. Joy is finding peace in the midst of thunderstorms. Joy is finding peace in the midst of trials and tribulations. Joy is living with a calm heart.

While growing up I recall a song the choir used to sing. “I don’t feel no ways tired. I’ve come to far from where I started from. Nobody told me that the road would be easy. I don’t believe he brought me this far to leave me.” I now have a greater appreciation for those words. Where is it written that life would be easy?

I have a testimony – one of faith, the ability to bounce back, and a testimony of God’s grace and mercy. All these testimonies would not be possible if it wasn’t for a TEST. In order to testify as to the goodness of the Lord, our faith must be first be tested.

I have a hearing loss. I’m a disabled person. I’m deaf..as opposed to Deaf. When the right times comes, I pray I’m able to hear the Lord say, “well done good and faithful servant.” (Matthew 25:23)

Tywanna

What is She… Really?

Chloe weighs 65 pounds, has soft, fine fur. She dries quickly after a bath and rarely has any "doggie" odor. Her teeth are easy to care for, and she has muscular legs and hips.

For an early birthday present, my daughter, Kyersten, purchased a “Wisdom Panel Insights” DNA kit for Chloe. The two most common questions I am asked about Chloe are:

What does she do for you?

What kind of dog is she?

The second question is probably asked more often than the first. Chloe’s trainer, Pat, at Fidos For Freedom believes she is part Vizsla and Retriever because of her color, body style and manner in which she “washes up”. I’ve never thought to ask Chloe’s puppy raiser, Linda, what she thought Chloe’s mix might be, nor have I asked her other trainer, Jolanthe. My daughter thinks she is a Rhodesian Ridgeback and American Foxhound mix, as she has a ridge of hair that stands up along her spine when she is upset as it lays in the opposite direction of the rest of her fur. I think she accounts the Foxhound part because of the way her head and ears are shaped. I’ve never really cared WHAT Chloe is, as she is an intelligent partner to whom I’ve bonded and work along side on a daily basis. Once in awhile we would belly-ache about not knowing for sure what her mix is as we get that second question so often. It would be nice to be able to say, “She is a SUCH-AND-SUCH mix!” You can’t argue with DNA after all. Don’t you watch any crime shows on television? (GRIN).

In three weeks we should know. Want to make a guess yourself? Please feel free to comment. We will see who guesses the best regarding dog breeds!


Wisdom Panel Insights Dog DNA Test
Chloe as a puppy
Chloe as a puppy

Collecting DNA from inside cheek

Chloe has soft "hound" jowls, but does not drool excessively.

Chloe’s head and ears
Chloe's back of body and head
Chloe's profile

Chloe’s faults include “overly friendly” at times, and a high prey drive for small wildlife.

Chloe seems to track well and tastes the air and smells both the air and ground. She will roll in wildlife scents if unsupervised. Chloe is like a long-distance runner. She paces well but does not have a spectacular sprint. She has well-defined leg and thigh muscles, with medium developed chest muscles. She has some excess skin at her neck, and soft jowls that are not really a dominant feature. She drools only occasionally.

Chloe has had a malignant small mole removed from an ear at 4 years old. She has no other health problems and has easy-to-care for teeth. Her fur is soft and she sheds twice a year, but not excessively. She weights 65 pounds, dries quickly after a bath, and rarely has a “doggie smell”.

She loves to retrieve, and loves to work with a strong desire to please. She has a deep bark which is decidedly unfeminine. She will “sing”/howl if she hears another dog howl, but never tries to do so on her own.

What am I… Really?

Wouldn’t it be strange if people stopped to ask me, “What are you anyway?” Oh sure, I am from a German bloodline, but what if that question meant something far DEEPER? Could you look at someone and determine…

“They have a good heart. They are kind and gracious. They are forgiving and teachable. They wag their tails when they are happy and do not drool excessively!”

Yeah. OK, that last part was a bit over the top. But do you stop to consider what YOU are… REALLY? I really want people to look at me and SEE something far deeper. I want them to see a confident person with numerous ABILITIES in spite of a disability. I want them to see a friendly, inquisitive, polite person that would make a good friend. In public, we encounter large numbers of people… at least in my area. You only get one chance at a good FIRST impression. What do people see when they see you?

I think one of the most complimentary things anyone ever said about me was at an assistance dog/service dog conference in Baltimore several years ago. Numerous clients from Fidos For Freedom attended the conference since it was practically “local” for us. In between sessions, we would walk around and talk to numerous other teams from all over the country. I struck up a conversation with a man from California. He was blind and was there with his guide dog. After we had talked for about 10 minutes, he asked,

“You are a person of faith, aren’t you Denise?”

I was a little startled at the change of topic, but readily answered, “Yes… I’m a Christian and my faith is very important to me!”

He responded, “I could tell. It’s pretty evident and I can always tell after talking to someone for awhile”.

Something happened to interrupt our conversation and we went our separate ways. I’ve thought about that moment many times since. Exactly HOW DID HE KNOW? What did he hear and sense that led him to draw that kind of conclusion? More importantly… can I continue to live that way and respond that way so that others see the same?

I certainly don’t condone being hypocritical and not “being who you are”. Most people can spot a fake pretty quickly. Avoid being condescending in your kindness. If it isn’t REAL to you, why? I want to be a positive advocate for people with hearing loss and Meniere’s disease. I can only be that if I’m genuine and positive about what I am able to do in spite of my disabilities.

What about you? What are you… REALLY?

P.S. ADDED 4/28/10:  Read here for the results!

Denise Portis

© 2010 Personal Hearing Loss Journal