H.O.P.E.

HAPPY OPPORTUNITIES PURSUING EARS WITH COCHLEAR IMPLANTS IN THE WORKS

Quiet music playing in the background.

"DAY AFTER DAY I`M MORE CONFUSED, YET I LOOK FOR THE LIGHT THROUGH THE POURING RAIN…"

by Dobie Gray

Being hard of hearing (HOH) or deaf, we tend to build a wall or tower around us, for our protection. Even the hearing people will do this.

In December 2015, I was so attached to thoughts that I tried to reach out to others. The wall remained. My thoughts start to spin like a hamster wheel, faster and faster. So much uncertainly and unexplained issues navigated me towards Cochlear Implant (CI) Blog closed groups on Facebook (FB). Each having elected administrators to run the group to their requirements and restrictions.

One aspect appreciated by all groups is that members "are not" to use these groups as medical attention. When such cases arise (and they do), members are encouraged to seek medical attention from their CI Team (audiologist, technician, surgeon or ENT doctor). Sometimes, these shared stories, information and experiences are interesting and helpful. Other times, it`s best to just jump over that, as everyone is entitled to their own opinion.
It was viewing CI video`s and reading editorials, FB pages and books that inspired me to create such a writing with dialogues involving my personal experiences, to which during the time I also became a cochlear implant recipient. For protection, alternations have been made to people`s names, places, circumstances and is from my own perspective.

In a sense, understanding hearing loss is important regarding health, well being, and quality of life. It is a normal part of process of hearing loss to grieve for your loss of hearing. For those who worked their way up from birth or early childhood had most likely had achieved coping skills and support dealing with this loss.

Deafened later in life, CI or hearing aids, is either a quick help -replacing sound and almost picking up where you left off when you lost it. Of course, it may not be 100% natural hearing but can be pretty close as your brain accepts the tones. Flip the coin, it may be a struggle to make it work out well, a mix of programming, patience, and practice.

I feel like I fell into both categories.

Likewise, I started at the age of 7 years with a hearing aid (HA). With the support for 2 years of a speech therapist teacher, I found myself doing very well in the main public schools, at least until the later years (10th class and onward in life). During the 10th class, I started feeling like a social hermit in school. Support becomes less available in the 1970`s. Teacher`s writings on the chalk-boards with their backs turned became more challenging. Teachers chose to use tapes and cassettes for the lessons. I disliked this, it was hopeless in my case to learn like that. Studying hard, I pushed the 11^th and 12^th grades in one year and got out of there. Then I was 18 years old.
In high school, I had sometimes managed to barrow someone else`s notes to copy and be able to have the needed information to study for exams. After 1979 high school graduation, in the next school - "a branch from the state university", this was hopeless to do. Unknown fellow classmates didn`t seem to want to barrow out or share their notes. I hadn`t pushed the teachers for extra help - I`m not sure why - maybe afraid I`d be challenged in class. Life was calmer (in passing and surviving classes), by just being there and trying to study the books. But this wasn`t enough in the university study, so that in the 2nd year, I quit. Life went on as a struggle with two hearing aids and continued working fulltime until I left USA for Europe at the age of 21years old.

"THE WORLD OUTSIDE LOOKS SO UNKIND..."

by Dobie Gray

Fast forward into the year of cochlear implant hearing to which I`m grateful for, and do thank my CI team.

"THANKS FOR THE JOY YOU´VE GIVEN ME…”

by Dobie Gray

Although at the time of that control, I hadn`t really realized which road in life I was heading towards.

"Sometimes, it is okay not to know".

One appointment after another came and went until I had to decide if I want the CI. Before my final decision to do it was made, my husband and I were sitting in the clinic waiting room as a young, long haired lady of 20 years old came in, sat and talked to us. She was cheerful and takeable. She`d been born deaf and was with CI hearing. She could speak, even though her tone had just a slightly off sound. But she was very impressive. I was impressed. But my emotions were on a yo-yo cycle, being unsure what to do, I said: "I can`t"! Then tears came. My husband, who sat next to me only looked on, and took over the talk with the young lady. She assured me, I`d be okay. I wasn`t so sure. As the therapist came for us, I quickly brushed away my tears.

"YOU KNOW THAT´S A GAME I HATE TO LOSE AND I´M FEELING THE STRAIN…"

by Dobie Gray

Last thing I wantedwas medical people see me as weak, an impossible situation to be in. Once in this office, being brave, I took the plunge and a date was set for the first CI operation, August 25th, 2015. I knew, I`d regret it, if I didn`t try it. My CI world began at age of 54 years old.

"This is not how your story ends. It simply takes a turn you didn`t expect."

by Cherly Strayed

A cochlear implant is very challenging (mentally and physically) in many ways, as well as rewarding to be able to hear.
Again fast forward, I share a few different dialogues, which I recorded in a CI Logbook or from texted chats and live events. I added on a reflection of quotes. Also of other writer`s sayings or quotes with credit given to their name. It`s an addition to give feeling like articulations of my inner voice. Please enjoy and with tranquility.

"You`re here, so be here."

by Cherly Strayed

For a change in housing and I suddenly was among the deaf, which was a new family life called CI rehabilitation (rehab). Having spent 99% of my life among the hearing people, this was quite an experience that turned out rewarding in the sense of reconnection to people.

Living among the hearing people as hard of hearing (HOH) or deaf is like existing in the shadows. Living among the HOH or deaf, and deafened, you discover you are someone. Breaking through that shell was awakening and explorative. There, people are so patience, kind and very humorous. This was all new to me as I felt included. All this was pleasing and yet upsetting as I found myself exploring my emotions too.

(Smiling), I started to think this place would make a good comedy film, about the ridiculous things that happened there.

“BEGINNING TO THINK THAT I`M WASTIN`TIME, I DON`T UNDERSTAND THE THINGS I DO…”

by Dobie Gray

Talking among the deaf became a pleasure to discover as to how we cope, to make ourselves understood when everything is combined, languages (English as that`s my mother language, German and sign-language). Laughing at the ways we choose to SL our names. Like Jamie, (17 yr. old), says she`s a (SL) "J" with an arm raised, turning her fist, (as an indication for the fire department blue light). She`s a volunteer. A funny gal Jamie is, she`d laugh a lot. She`d sign to me in the seminars in an effort to help me understand. Got to love the young gal, now if I only knew what she signed! Signing in German is different than signing in English. But just to watch her smile and laugh brought me joy.

Communicating like this is physically draining, so that I needed time alone to recharge.

"Spending time in solitude is highly self-nurturing and a practice we all need to embrace."

Heather McCloskey Beck

I`d take my guitar, find a quiet spot in the garden and strum.But I didn`t felt like I needed to impress anyone or accomplish anything. Just be.

The quieter you become, the more you can hear."

by Ram Dass

Music helped as a therapist to sooth me, and everyday gets a little bit easier.

For the last years, many people asked me "Why are you playing guitar? Can you hear it?"Feeling slightly discouraged, and about to quit again, a dear friend of mine, encouraged me to go on with my music, because it brought me joy.

"But it is extremely painful for us to "not do" the things that create meaning and value for us." Heather McCloskey Beck

There in rehab, I concluded I would go forward and request 2nd cochlear implant at my CI clinic. It was still with mixed emotions to do so, knowing my 1st cochlear implant had "not yet" reached the success I "will it" after some 11 months. I`m staying by the belief of the 3 p`s; practice, persistence and patience.

Working with two languages; German and English programs for hear trainings like TV, You Tube songs, children audio books, speech therapy, Skype.One thing I've come to love hearing is the birds greetings (chirping) every time I go outside. Also, the crickets and wind chimes sounding like music - is amazing too. One thing that`s "nerving" is the dog`s claws scratching the floor as he paces around the rooms for service of attention, food or to go out. Yet, ..."maybe" that`s not too bad either!
As a CI'er, it's a part of our remaining lives necessary to have therapists. It`s a team commitment.

As a rehabilitation communication therapist gets very chatty in class, it calls for concentration. Being tired and talk is done in German, my mind wanders easily. That`s a bad thing when she asks, did I understand? After a time, those words are annoying! They indicate as if you are suppose to understand.Of course, I say "yes" and "no", I don`t understand every time. That nerves! Deaf people are good bluffers. I am also guilty of it. However, she doesn`t let me off the hook that easily, she wants the input back. Opps! Not surprisingly, I didn`t repeat this too often. In social bluffing, no one wins. I realize therapist just wants to be heard, like I want to hear. Need to make changes to make communication better. It`s like you have a solitary battle to cope with and hearing persons don`t experience it like you do. I realized I wasn`t contributing.
As the doctor said; "It`s my responsibility to hear it and understand it."

“Humility is about refusing to get all tangled up with yourself. It`s about surrender, receptivity, awareness, simplicity. Breathing in. Breathing out.” Cherly Strayed

Some months, after cochlear implant #1 rehab release, I`ve come to recognize my need to associate with other CIèrs. Keeping in contact with a few from rehab and cochlear implant self help groups.

We share our experiences. I`ve donated my copy of the book "Taube Nuss" (Deaf Nut) by Alexander Görsdorf to the group. Once, I had played my guitar to the group, so they could hear how, as a CIèr, we can appreciate and enjoy music too. However, our attitude, our expectations matter regarding to just how clear technique hearing can be versus natural hearing. That needs acceptance and practice as well. It was interesting to explain the difference in hearing music played as strumming or picked, the value of music comprehension.

Leaving the comfort zone for change.Couple of months post my 2nd cochlear implant, after 2nd mapping (technical programming), slowly I`ve gained a good sense of understanding with my 2nd cochlear implant hearing. It`s progressing clearer with much hear training practice and future mappings.

A CI open doors day at a clinic is a way to learn more about cochlear implants. Many people are there, including CIèrs. I chatted to a few here and there, then I placed an order for ear hooks for the sound processors. I was ready to leave when a woman asked me for my phone number to connect on "WhatsApp". Feeling a bit weary of people, I wasn`t sure I wanted to. People means relationships, relationships are complicated. But I didn`t have a good reason to say "no". People are hardwired for connection. We need to socialize to feelwhole. So to improve the situation, I`d shift my perspective and be proactive and involve myself and enjoy things. All that matters is now. She is CI-bilateral too and is amazing. A new friendship was formed.

"Be curious and carry on."

This was posted on a CI Blog (SHG) FB.

Anonym xx;

Hey, I posted a while back about increase rates of fatigue within cochlear implant users, but another thing I have been doing research on increased rates of depression within the CI community.

Often times when our brain is working that hard, emotions can hit you intensely, resulting of high stress, exhaustion and depression within the CI community. You have to remember our brains have to manually process all the sound. I would be interested to know what people`s opinion on this is, and if you suffer from this cyclical depression or not. Thanks guys!

(Quite a lot of time went by with no one responding to this, so I decided to take it up.)

My reply;

Being deaf is exhausting whether your HOH or CI. Our brains have to work more to achieve the sounds and make sense of it. Suddenly, we receive all this attention because of our deafness, our causal routine life pattern changes. There is no going back. It`s like being part of a study. The emotional turmoil associated with the change... joy, frustrations, fear, uncertainly, fatigue, and anger also can loosen deep buried emotions we keep unknowingly to ourselves in attempt to survive society. I think a lot has to be considered. The age, experiences as to whether one is impacted or not. Locally… good support, balance and CI team attitude helps a long ways and sadly, from what I`ve read, for many people, are short of. But with the CI becoming more known, I think more is being done to help people. Daring greatly, being courageous, we`re a remarkable bunch.

-Many thumbs up and some responses.

Anonym XX: Not a truer statement spoken.

Anonym XX: Beautifully said.

“Gently walk through life, everywhere you go, you leave footprints.” simplereminders.com

At times, I feel like I am dealing with 3 kinds of hearing.
CI #1, hearing aid was like muffled hearing, an ear of no identity for tone - is yet getting brain educated to identify and understand sounds and voices. I can still recallthe shocking thrill of hearing noise on the toilet. Not many of us want to admit that one. Late in the evening sitting with some 6 ladies actively talking in German I had managed trying to understand some words here and there. With my head moving around clockwise, intensively concentrating trying to understand whatever I could, imagine the startling interruption with an extreme loud crunch sound - only to realize someone bit on some chips and ta-da got my attention! Obvious of my glance, she laughed and chewed quieter after that.

The last nights, I streamed with Bluetooth with this sound processor for television. I found this more complicated, as the variety of tones for sounds and voices are harder to understand, or even trying to match it to the closed caption-text. This is where patience comes in, ...in time, it`ll happen.

2nd kind of hearing is CI #2. Hearing aid made it possible to understand voices before right ear was implanted. I chose to go onward with this ear as I had reached the maximum volume level "4" as a new battery. It was only a matter of time that that sound vanishes too.

By activation evening, I could hear voices. It sounded like underwater talking with a high "bing" tone attached. But really, does anyone really talk underwater? Maybe better described as holding your nose while talking. As written in one of my favorite books "The Miracle Morning" by Hal Elrod, "Everything is difficult before it`s easy". An operation side effect can be with dizziness, balance issues and tinnitus which I experience but should fade or disappear with time. But I am happy and relieved that I have voices.

Now I`m a "Cyborg" at 56 years old, I`m deaf or CI hearing.

No, I don`t regret becoming bilateral.I`m happy for the opportunity to hear. My ladies group complimented that my voice is still clear and louder. I get little "ah-ha" moments, like when I realized I can hear someone else voice coming through my husband`s mobile phone while "he" was phoning. The sense of confidence it brings on, makes me smile.

3rd kind of hearing exist for me is lip/face/body reading and bits of signing.I relied heavily on it before cochlear implants. I admit it's tiring for my eyes. It seemed to be a need, an automatic mode thing for me to do. While hear-listening to TV - I felt thrown in "sorts" of hearing. It was weird. Sometimes, some words of text didn`t fit with face-lip movements, that I`d be forced to absorb "what do I hear".

When the language is influent but expected, you feel desperate in means to make yourself understood. Not feeling encouraged to use SL or mimicking, I`d resort to use this method of pen and paper to make myself understood.

Obviously, therapists didn`t seem to care for this. They wanted me to hear with my CI`s and speak and I want this too! By hearing, I presume they understand my voice but I was still not clear to myself. I still use other ways as a crutch to communicate that I`d feel trapped, in desperation I`d write more. There are still challenges in everyday. Things I can`t hear, or out of the CI mapping / programs, but it still brings me joy to hear.

A therapist suggested that I`d use a symbol to find calm. This person uses a jewelry charm, a little silver teacup as her symbol on her bracelet. To stop, pause, breathe and drink a tea. My symbol, I created, and attached to my tablet, looks like a stop sign with the ocean in the middle. It brings me comfort. Symbolizes from (Jon Kabat-Zinn) from his writing -reminding us; “… the human mind is like the surface of the ocean that gets whipped about by bad weather. We all get reactive, but underneath the waves there is a deeper calm if we can only reach for it.”

Earlier times, I was an active ocean swimmer, so it relates to how exhausted I`d feel when the waves hit. So I`d dive under where the calm is, then resurface to breathe again. It`s also about accessing the field of infinite calmness within us.

This brings me to discovering the book “Loving What Is” by Byron Katie through a voice coach, that was a guest speaker at a SHG that had mentioned as a good read. This book explains the worksheet called “The Work of Byron Katie, Judge-Your-Neighbor”. Using this “Inquiry” worksheet helped ease my mind from feeling so stressed by investigating the thought that makes me feel uncomfortable.

Byron Katie`s “The Work”, ... the Inquiry is a way to undo thinking. Questions to bring yourself to the realization of freedom from the attachment of your thoughts. This, one can do alone. This dialogue is with Katie´s “Inquiry, Judge-Your-Neighbor”, (this is just a part for an example).

Katie: Therapist scare you. Is it true?

Me: Yes!

Katie: Can you absolutely know therapist try to scare you?

Me: Well no, I can`t know that.

Katie: How do you react when you believe that thought?

Me: Shocked, angry and dazed that people are doing this.

Katie: Can you see a reason to drop that thought?

Me: I`d feel relaxed. Get on with life. Trust people.

Katie: Can you see a stress free reason to keep that thought?

Me: No.

Turn it around

Katie: “... to the self”.

Me: I scare myself. I`m scared. I scare them. (www.thework.com)

“-We can`t feel stress unless we`re believing a story that isn`t true for us. Your either attaching to thoughts or your inquiring. You are your own freedom.

"-When we meet our beliefs- the mind gets really quiet. -Meet your thoughts and they let go of you. -What is, is.”

by Byron Katie

A little frightening and yet exciting, it feels like I`m wandering in a new life. I`m grateful for all the support and kindness that was given from the people who were and are there for me. I`m looking forward to this hearing journey.

“Put yourself in a way of beauty.” Cherly Strayed

Agenda holds for a women get together to Bremen Riverdance Theater and several CI gatherings (seminars and barbecues) and travels. Many things I look forward to hearing.

Outside in the warm sunshine, I`d close my eyes and listen to the everyday sounds. I`d listen to the rushing cars go by, rumble of an airplane in the sky, birds are chirping, light breeze blowing the branches and how sweet it is to hear.

It was during this stay atthis CI rehab, that during my sightseeing and wandering in town, that I purchased this little silver ring with the word "HOPE" on it. It seemed like a "optimistic omen"and to which I chose to name this story.

"THE RHYTHM, AND RHYME AND HARMONY, YOU HELP ME ALONG, MAKIN` ME STRONG, OH GIVE ME THE BEAT BOYS AND FREE MY SOUL, I WANNA GET LOST IN YOUR ROCK AND ROLL AND DRIFT AWAY…"

by Dobie Gray

 

By Sabrina Stelzer

October 2017