About hearttoear

Cochlear implanted at the age of 15. Today, a 23 year old woman who is a housewife to a fantastic survival buff, stepmother to 4 incredible children, mother to 8 animals, and her hearing continues to improve everyday. Heart to Ear is the anatomy of listening with your heart. Are you ready?

I Want You to Know Part 2

art 2 series in my personal story and in exploring advocacy.  This is a piece of a whole, a glimpse of stories that highlight the possibilities for others.  What do I advocate exactly?

Part 2 explores the experience of hearing and talking as a deaf child.  How speech therapists dealt with me and how life around me taught me better lessons than anything else.

If you haven’t yet, please read Part 1 first.

Life and Stuff

It was never predictable from day to day.  Back then, that used to bother me.  Today? It’s still unpredictable and I can handle it.  Sounds came to me faintly.  It was my eyes that took in the details and it was my hands that put across the needs and messages I gave.  I was the awkward child with long, tangled fingers.  The awkward child who never quite had the vocabulary to explain what I was hearing for those trying to understand and advocate for me.

It was frustrating.  I did hear, but was told that I missed out so much.  Sounds would either seem like so much white noise, or come to me faintly from a distance.  There would be spikes, an upward pitch of sound, then sudden dropping to a low-level roar.  Every single sound was interpreted by my brain as vibrations and feelings, so I learned to get by on the twinges and pops of my one singular ear that had any hearing left.

That also played into my speech patterns.

The Kid with Verbosity and Stubborn Streak

I had such vocabulary.  Words that felt like music to my heart.  I didn’t always know where they went in a sentence or what they meant entirely in the huge context of things.  My biggest frustration was that I couldn’t hear all the sounds or emphasis that made up complex words I enjoyed using in writing.  So, my pronunciation was often viewed as cutesy and funny.  I knew how to spell them quickly and with confidence, but I just couldn’t say them out loud.

Over the years, it cemented into a stubborn streak.  I stopped talking for speech therapists.  Or I would engage them into irrelevant conversations and throw fits if they corrected me.  I’d keep my voice low and soft, after being told by others how loud and high-pitched I was.  I refused to speak up louder for my therapists.  So, it became sessions of refuge from classrooms, with no real improvement on my speech.  They had to get really sneaky with me.

They’d bring me books to read out loud, which I often sidetracked into a conversation on a single sentence.  They’d get me to sign out the words on which sounds I sucked at (s, sh, ch, j, and z), and then say them.  They’d play around with vibrations, touch-the-throat, press face against table and touching while talking.

The biggest break-through for me was deepening my voice.  I could feel every sound in my throat, in my teeth, in my gums.  I also began to notice lip patterns and shapes in lip-reading that most people wouldn’t notice.  Or if they did, they had no words for how to describe what they could see.  I watched their throat constrict on certain words, watched their tongue expand behind their teeth, and the placement of their teeth.  I heard how certain sound carried and took into context for the sounds I couldn’t quite hear fully.  Imitation and passive observation became my best teacher, so my therapists worked with that a lot more.

Advocates Were Also Students

The environment we live in, the people who interact with us, the life that goes on around us — the full utilizing of all of these experiences is what teaches a child to communicate with others.  So, therapists were also students in observing the varied ways children with speech impediment and hearing loss took in their world.  Deaf children imitate their world, learn from their world, and were far more receptive of feelings.  The external feelings of their loved ones – texture and smells and vibrations – as well as the internal feelings that we process everyday.

I can tell you honestly that none of us are ever done learning.  What seems like nothing is improving, a lot is going on under the surface that you cannot see.  You can’t rate or grade these things.  You can only hope to learn from them as much as they are learning from you.

Onward To The End

That’s the end of Part Two.  Part Three will discuss the culmination of those experiences and what we should truly advocate for in our deaf/hh/implanted children.

Discussion: What were your experiences as a parent or as a deaf individual with speech therapists, audiologists, and communication with the world in general?  What do you think should be improved upon?

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Why Did This Happen To Me?

Often, in the face of difficulties, two questions arises.

  1. Is God displeased with me?
  2. Is this the result of sin?

———————-

These questions boil down to, “Why me?”  I will admit to wandering into these thoughts with a heavy heart when I was younger.  For whatever reasons, I lost my hearing and my mother at the same time.  For whatever reasons, I cannot remember what happened.  There are no triggers to suddenly see what my 2 year old eyes saw.  What did that 2 year old hear for the last time?  Why did that have to happen?

It didn’t help that I felt guilty and selfish for those thoughts, when my grandmother, my aunts, and my uncle all lost someone precious to them, too.  It didn’t help that I felt that, in the wake of that loss, they may see a product of sin who would become their burden.  It was when I got older that I left behind any grieving, for it felt fake to grieve for something I felt like I never had.  I stopped feeling bad about it because there was a redeeming grace in living life with everything I had, and let me tell you, it’s a beautiful way to live.

There are two stories that brings mine into a different perspective.  There was a group of people who believed that blindness, deafness, difficulties of life, abuse, and more was a direct result of the sins of either that person or the person’s parents.  Those same groups of people affected the lives of two very particular people in two different times and places.  Then, in a flash of grace, something changed those two people.

Let’s sit at the side of the road and watch quietly here.  Here we see a man who was blind from birth.  Here he sat and begged while people walked on by and ignored him.  A man, surrounded by his followers, came upon the road and saw the blind man.  His followers observed with pity swelled up in their hearts and asked, “Who sinned that he had to be born blind? This man or his parents?”

The man replied, none of the pity in his heart but only love and mercy, “Neither this man or his parents sinned.  This happened so that the works of God may be displayed in him.”  This man, the Messiah, made some mud with dirt and his saliva, placed them upon the man’s eyes, and told him to go wash in the pool.  The blind man went, rinsed, and could see again. (John 9)

To understand the reply, consider this:

Redeeming tragedies is more important than wallowing in them. Learning from difficulties is healthier than letting them destroy our initiative.

The healed blind man redeemed his misfortune. Following his healing, he spread the good news about Jesus’ power. We redeem our tragedies by telling others how God’s sustaining grace has kept us afloat when it appeared we’d sink. We redeem our trials by sharing the lessons He has taught us through the “what.”

– From Why? by Martin Wiles

Now, let’s go back further.  There was a man who was so highly esteemed in his time.  He lived for his God and shunned evil.  He was wealthy in everything.  When troubles poured upon him and he lost everything, he ripped his clothes and sprinkled ashes on himself.  Then he sat on the ground and worshiped.  His friends came and saw him.  They cried out and sat with him to comfort him.

Their idea of comforting him was telling him that he had displeased God somehow.  They tormented him and mocked him, telling him he had to repent.

After a long period of this, God came to them and said to his friends, “You have not spoken the truth about me.” In that moment, he gave everyone a chance to be redeemed.  In glorifying God even in his pain, Job received even more blessing than he ever did before.  (Book of Job)

In this story, there is something powerful in trusting that what happened to you is not for the sake of evil or because you were bad.  What ever happened that was bad or painful can have a beautiful, glorious thing come out of it.  It can be turned into something good and lovely.

It isn’t about whether or not you deserved it.  There is a simple fact that this happened and it’s time for you to learn how to take the good from the bad.  There is a huge, exponential spiritual and mental maturity in taking what you have learned and enjoy your life anyway.  This strengthens you and gives you the capabilities you never thought existed.

 You are not lacking anything.  If anything, you gained so much more.  You begin to learn to listen more with your heart than to follow along with the same, tired path of everyone else.  That’s why this happened to you.

From God’s Heart to your ears,

Kayla

I Want You To Know Part 1

hat you’re about to read is a personal story of hearing loss and advocacy.  This is a study of being an advocate through the lens of a story.  It is an observation of having the experience of advocates who were on my side through-out my life.

This is my story — raw and unrefined, and as true as I can remember it.  Consider this installment a foreword.

The Shining Example of Advocacy

I know my story, all too well.  I tell it as if it happened to someone else.  Even so, it takes a lot out of me to the point where I realize it’s going to impact someone every time I tell it, even myself, that I’m left shaking when I’m done.  It is an emotionally draining process, remembering each detail given to me by my family and pieced together as I grew older.

When I started this Heart to Ear project, I knew it was inevitable.  This story would come out in pieces of posts addressing different topics.  That’s how I visualized it happening.  I’m a dreamer with limited imagination.

It was during a brief moment of quiet, on an interstate, during a very long trip that an idea sparked.  It came in this form of inspiration:

My dear children, I write this to you so that you will not sin. But if anybody does sin, we have an advocate with the Father—Jesus Christ, the Righteous One.
– 1 John 2:1 {emphasis mine}

This was a study of how many Names God was known by.  One of them was Advocate.  Advocate has two important ideas of what the name means.  First, it is an act; the act of supporting, defending, protecting, getting someone else’s voice heard, and standing up for their humanity and rights.  Second, it is a person who does the pleading on someone else’s behalf and supports the choices someone else makes.

Christ has interceded for us.  I know this is in reference to the washing of sins, but His intercession was also for how we could live our life to the fullest in the Father’s glory (John 10:10).  When I thought of it, somewhat groggily as it was a darn long trip, I reminisced on all the advocates of my life.

The Procession of Advocacy

There they were.  Hearing interpreters; my friends who made sure I understood what was going on in a group of people chatting; the people who went through the process of learning about cochlear implant with me; my family members; and so many more.

The ultimate, though, is my grandmother.  She fought long and hard; for custody of me, for appropriate interpreters in classes for me, for my health, for my communication (she believed in both sign language and verbal speech), in those long hours of driving to be tested for cochlear implant, for my driver’s license, and ultimately, defended my freedom.

I recall my youngest aunt doing the same for me, in many ways, in far more unique and subtle ways that she often became the loud, assertive voice for my safety and happiness.  When, at times, I perceived my family members to be cold (in my young, uncertain mind), my aunt was steadfast and understanding.

Whatever else my grandmother and my aunt may be to anyone, to me they showed expressly what it is follow Christ’s example.  To take someone you love out of the deep dark that came in the aftershock of the death of a daughter and a sister.

What follows is my story.  It is the story of losses in many ways and a story of gains in many ways.  It is the story my spirit whispers on a daily basis, the story that God has refined me through fire to take me to this place in life, and further fires await me still.

Part 2 is here!

Being Fixed vs Staying Deaf Part 2

I’m sure most of you remember the uproar over the article that emerged on the discrimination and myths heaped on the actress Emily Howlett.  If you don’t, maybe you need to read part one.  The uproar occurred at this article.

As you can see in the comment section, people who are hearing with no knowledge of how cochlear implants truly work are debating over whether or not deaf people should be forced to get a surgery.  People who do not understand hearing loss, or even has perception of struggling with deaf parents, cannot view through lens that has already been colored by their own judgment.

This 2nd part will continue to address the basic myths from which most false argument spring.  My hope is that implanted people reading this will not feel they made the wrong choice, but rather that they did make the best choice they could hopefully based on their circumstances and their own needs.  The deaf people reading this, my hope is that you know there is support for you if you choose not to get implanted.  I wrote here that it’s okay.  The hearing people reading this, my hope for you is that you read with an open mind and heart.

Thus, part 2 continues.

4. Cochlear implants are easy fixes for the deaf and hard of hearing.

Here is where you need to understand something about what cochlear implant really is.  The implants work with what is available, not with what is already totally lost.  The wire of the implant is inserted into the cochlea (hence the name), but the cochlea’s job is to stimulate what is there in order to send the messages to the brain.  Therefore, it is not a total recovery of hearing for some people.  Sometimes, there is no recovery.  That’s why there is a lot of testing done on candidates of the surgery.

Second, I mentioned candidacy.  Here’s another thing that will give you a glimpse into why cochlear implants are not easy fixes.  I went through months of testing in order for them to prove that cochlear implant would truly work for me.  First, I had to have moderate amount of nerves left that could be stimulated.  Second, I had to have moderate amount of speech capabilities.  Third, I had to have a deep support base with family and friends who are willing to help me through recovery.  Sometimes, many candidates were refused.  That’s why I’m shocked at the new wave of audiologists insisting, in getting their payment due, that every single deaf people should get their cochlear implant, along with the new wave of insurance companies declining those who did not get the surgery.

Third, finally, there are tons and tons of work to do AFTER the implants.  This is actually a lifetime’s work for many.  My brain is not fully capable of interpreting certain sounds, therefore I still struggle to this day to hear.  My anxiety increases at the expectation that I hear everything due to “my easy fix”.  I am drained by the end of the day at the effort to hear everything.  This is the case for many older people who are implanted.

No, it is not an easy fix! Get that notion out of your head instantly.

5.  Those who reject it should not receive benefits.

This statement is apparently a very large blanket.  A group of people will say this is meant for people who is able to get implants but reject it entirely based on their culture.  Another group of people will say this is meant for all deaf people who should get the implant, regardless of their circumstances.

This particular comment jumped out at me the most:

Those who reject it also shouldn’t be given any more assistance on the NHS or via any benefits. You can’t choose to remain disabled when you don’t have to be and yest still get the same level of support as others that don’t have that choice. They very much should be judged on their choice and quite harshly I think.

I think you can see which part of the blanket statement this falls under.  It isn’t a matter of choosing whether or not they are disabled.  There should always be a high level of support for everyone in the choices they make that they deem BEST for themselves.  You cannot know what they went through, you cannot fully fathom what their ‘disability’ is much less make a statement: “When you don’t have to be”.

Further, there is a high risk associated with receiving implants that makes it very easy for people to reject it based on their own concerns, life, circumstances, and fears.  You cannot know what their fears are, much less take away their support.

In spite of all that, please tell me what Freedom of Choice means.  I am at a loss about adequately expressing my disbelief in people believing they have the right to pontificate on a subject they know very little about, and then be in favor of eradicating their freedom of choice along with support.  So, I will leave this as it is.

ETA: A relative brought this to my attention.  It is backwards to believe that people who are ‘fixed’ should receive benefits and people who are not should not receive benefits.  If they are so fixed, what use is there for benefits?

6. Deaf people are being willfully ignorant on refusing cochlear implants for culture purposes alone.

I will admit openly to not understanding the deaf culture.  In the same vein, I am not opposed to deaf culture just because I lived as hearing and chose to be hearing.  This is where open heart comes in; accepting people of all stripes and dots.

Deaf culture is intricate.  They found their roots in it; their sense of security, people who understand each other, communicate to each other.  Believe me when I say that many are fully aware of what cochlear implant is.  There is no ignorance when their quality of life is high.

Becoming implanted for those so immersed in that culture means struggling to understand (for recovery is never 100% guaranteed), struggling to communicate, and finding themselves smack dab in the middle of both cultures.  You see, hearing culture, I know from experience, do not fully embrace or acknowledge those who do not hear as much as they do.  It’s all a matter of perception for both worlds.

There is a lot of fear in being shunned and being stuck within two worlds.  It’s not about choosing between disabilities left and right, it’s not about choosing whether or not to have one.  Disability is a moot point here; disability always exists and the language should change in favor of ABILITY.  What their abilities are!

7. Choosing to remain deaf is like choosing to not have treatment for cancer.  Other variations: People who cannot walk chooses not to have wheelchair, people who must wear glasses in order to drive, etc.

This one is simple, so I will make it simple for you.

  • Deafness is not a life-threatening disease.
  • Deafness does not take away from ability to walk, drive, and live.
  • Deafness is not contagious.
  • Deafness is not a choice for many.  It simply is.
  • Deafness is merely a loss in hearing, not a loss in abilities or living.
  • There are far more other choices in enhancing one’s life than simply cochlear implant.

In the end, the question of whether to be ‘fixed’ or to stay deaf is not up to those who do not have to worry about it.  The question can also be better phrased this way: Whether to have an invasive surgery to hear or whether to simply continue to be as they are.  And that is better left to those who are capable of making the choices themselves.

Thank you for reading.  Have a nice day.  If you have any questions, concerns, or comments about this series, please comment below.  Understand that I will not accept verbal attacks or insults.

Being Fixed vs Staying Deaf

ear deaf readers, does that title above anger you? Dear cochlear implant readers, does that title above confuse you?  And dear hearing, do you feel either neutral or un-sympathetic?

Let me be clear here.  I believe that using the words ‘Fixed’ and ‘Staying deaf’ are horrible words to use about both implanted and deaf communities.  That should never have been a question, let alone phrased in such a manner.  This post is a reaction to the article Not all deaf people want to be ‘fixed’.

First, the author did a good job bringing home the fact that implants are not easy “fixes”, as well as the fact that neither groups are better or wrong than the other.  What is riling me up is the report of audiologists’ ignorance (which I have personally bore the brunt of), as well as rude comments piling up on each other after the article.

Second, Heart to Ear addresses the need for all types of language, an understanding that cochlear implants are not quick fixes, and allowing all groups to make their own decisions in the matter.  You will see glimpses of that in this post, while I respond to each issues brought up in the aforementioned article.

Here we go.

1. If you do not get a cochlear implant, you will fall into the deaf society.

When I first heard this argument, my jaw dropped.  Really?  This negative denigration of the deaf community is very unnecessary.  The implication here is that deaf community will cause your IQ to drop, your ability to speak vanish, and your capabilities in the “real world” next to zero.  All untrue, it’s so false that it’s almost laughable.

Getting a cochlear implant or not should *not* hinge on whether or not you will become a particular part of the community.  It should hinge on whether it’s right or wrong for YOU and you, alone.  If people do not accept your choices, they are the ones you should not ‘fall in with’.  You can inform them, but if they choose to not try to understand or accept you, that is their loss alone.

2. Deaf people are broken and disillusioned.  Other variations: Deaf people are dumb, deaf people force their hearing children to not speak, deaf people are not functional members of society.

Deaf people are incredibly resilient — they have spent decades adapting to a lack of hearing.  A lack of hearing does not cause them to be unable to do anything.  They still have the drive and passion for life.  They still have a brain residing in their complex skulls.  They still have emotions that all of us are learning to deal with on a daily basis, even as adults.  Telling them any variation of #2 is telling them their life is useless.

Tell that to Keith Wann, who is a fantastic CODA comedian.  Tell that to the deaf actress, Emily Howlett, who is very successful at what she does.  Tell that to the hundreds of deaf people who are good at what they do.  Tell that to Helen Keller, if she were alive, that the way she changed the world was in vain.  Tell that to me, who has lived for 14 years deaf and struggled with identity.  Any of them, any of us, will tell you, “Screw you”.

3. Don’t continue to learn sign language because your lip reading skills will disappear, your ability to speak will fade away, you will alienate friends and family, etc. 

Sign language, for me, was and remains one of the many language tools I had at my disposal.  What people need to understand is that we all use whatever tools we have to communicate.  Communication is on the list of top priorities of any social beings.

Sign language came along with lip reading.  I continued to lip read and I still do, in addition to struggling to hear with my cochlear implant.  Some days, I do not hear as well with the cochlear implant.  Other days, I am blessed to catch word after word.

I continue to use my voice.  I enjoyed the feeling of vibration in my throat, long before I was able to hear my own voice as clearly as I do now.

My friends and family were eager to learn sign language, as well as enjoying conversation with me face to face verbally.  None of this alienated them.  However, there are trepidation on the side of hearing people to approach deaf people for fear that communication between the two would never work out comfortably.  But the first step into attempting to communicate usually result in new friendships being formed and understanding that both worlds always learn new ways to communicate, especially via technology.  That’s the fun part!

And guess what? As a cochlear implanted individual, I still struggle daily on communication as much as deaf people do!  So, please, realize that everyone has different degrees of struggle, no matter what the ‘disability’ or how ‘fixed’ someone is.

Part 2 here!

{You can also enjoy this article from hubpages.  Link Below.}

If You Don’t Want Cochlear Implant, That’s Okay.

Excerpt:

Spouting the myths above makes both the implanted and the hearing people look very bad. It’s oppressive to the deaf people and it is very ignorant. I know that as an implanted individual, I am literally ears-burning-red ashamed of what has been done to Emily Howlett, as well as the cruel people bashing the deaf culture as a whole. It’s time to stop, now.

Come And Sit Beside Me, My Only Son

Mama told me when I was young…

usic is a difficult thing for many people with any kind of hearing loss to enjoy.  For me, it was a love and hate relationship.  I loved the feeling music produced in me — physical and emotional.  I hated when I couldn’t understand the lyrics.

Some of my biggest joy as a young child with hearing aids was when someone lip synced along with the song, helping me to match sounds to words.  In the years when CDs were a fairly new thing, I listened to the ones that had lyrics come with it.  I’d sit next to the cd player in the floor with the booklet in my hand, obsessively listening over and over as I learned where the words were in the songs.  Then, of course, internet became a big deal.

Come and sit beside me, my only son…

Music is so diverse.  It celebrates relationships, marriages, children, revelations, and life in general.  It consoles or cheers up the broken-hearted.  It identifies the paradoxes of life in a humorous way.  It can be angry, emotional, sad.  It can be a message to others.

I don’t agree with the constant debate over secular music.  To me, both secular and Christian talks about life.  Life is created by God.  If it is pleasing, true, or speaks to you in such a raw, honest way, there is something in there that glorifies God.

And listen closely to what I say…

On a recent trip to Texas, we listened to Simple Man.  That song was originally written and produced by Lynyrd Skynyrd.  But my favorite version is from Shinedown.  Why?  The Lynyrd Skynyrd version was always hard for me to totally understand, even though I loved the beauty in their version.  Shinedown’s singer sang with such a clear and haunting voice.  I heard and understood every word.

That was my deal.  I enjoyed music best if I could hear the lyrics.  To this day, even with my cochlear implant, I have difficulty making out words specifically as they came, discerning them away from random sounds.  However, the point of music truly is to enjoy each sound as they come, whether they were instrumental or vocal.  Your auditory training can come within learning to discern what is making your heart thump (bass), what is high-toned (guitars, violins, etc), and making out the words (lyrics).  Use this love for music to begin to learn to hear better.

I believe that this is one of the best ways to do auditory training.  I know this is a far more organic approach to listening and hearing, with the intent of not just enjoyment but learning what you hear.  It appeals to all your senses and helps your brain to associate memories and feelings with the words.  That is training your brain to truly identify the sounds.

 The whole earth is at rest and quiet;
They break forth into singing.

Isaiah 14:7

What is something you enjoy listening to the most? Parents, do you help your child to understand so that they may enjoy music, too?  I’d love to hear from you.

Oh, and this.  This is for you.

From God’s Heart to your ears,
Kayla

ETA: This was shared on Friday Friends over at Happy Faces Unite Aug 5th, 2011.
happy faces unite

Attend With Your Hearts

Welcome!

 

id you come across here to find community and information on cochlear implant? You got it.

Were you looking for more Scriptural-based or spirituality of Christianity on attending with your hearts? You got it.

My manifesto will tell you everything in a neat little summary.  But the reality is, living in the world we do today, nothing is ever neat or completely defined.  So, when we re-define something, we do it within our hearts and in the life we live.

I am redefining what it is to hear and I am compelled to do so in the name of Christ.  Straightforward? You betcha.  Genuine? With ever fiber of my being.  Regardless of your place in life, you are invited to learn from what I have to offer.  And I am pleased to learn from this journey I am embarking upon, which means I also listen to my readers.

Everything I write here is about dealing with listening and managing.  Is your cochlear implant hurting your ear? There are solutions.  Do you feel as if you don’t hear everything? There are answers.  Is your child implanted?  There are things you can do, lovingly, as a parent to support your child as mine have supported me.  Are you going through the process of insurance and candidacy for an operation? I’ve been there.

You are a steward of your ear and your child’s.  It’s something that God has entrusted to you.  If you are questioning the value of the implant, there is no real answer to that.  My response to something like that is that not everyone gets it and not everyone chooses to have it.  And that God provides different avenues of hearing — completely deaf? That’s okay, there is an ear upon your heart to listen with.  There is a wide range of communication available to you.

Never allow a disability, wherever place you are in, to hinder you and your life.  You are blessed, no matter what.

And you are invited along on this journey.  Enjoy.

Blessings,

Kayla.