Change of Heart

For the last few years, thinking about getting a CI filled me with dread. What a horrible thing to implant metal into your head.

These last few weeks I have spent hours and hours researching implants. Hours. It's a big deal, not a decision to be made lightly. And the more I read the more excited I get. Thousands of people have undergone the knife and added metal to their skulls. And a very, very high percentage would do it again.

My emotions got the better of me for awhile though because of the rivalry of brands. I became very frustrated at the prospect of choosing a brand as the brands hate each other and make it sound you will be a big fat failure if you choose the other brand. But this is what I have decided. I don't care who you are or what you say or what white papers you are using. You can do well with ANY of the brands. I'm now convinced that I CANNOT make a wrong choice.

That being said, I'm leaning towards Advanced Bionics. Just because the name sounds cooler. Lol. Totally kidding. I'm leaning towards them because I am super impressed with the AB community and support. I'm also very excited about the new software, ClearVoice that is expected to receive FDA approval within a few months. It minimizes background noise and focuses on voice. How amazing is that? Now, what everyone in AB says is that your ability to hear music is nothing short of a miracle. At this point in my life, I do not care about music. At all. And I've voiced this to several in the AB community. Their response is singular: You do not know what you are missing. Do not discount music.

A small, very small, part of me is starting to open the door for the possibility of music. I recently remembered being in a church meeting where a video was shown of "Come Thou Font of Every Blessing." It had a full orchestra, a women's and men's choirs, evidently going all out as those watching with me did not have a dry eye. They were overcome with emotion at this video. Guess what my thoughts were. "TURN IT OFF!!!" So noisy. And loud. And clanging. And distracting. And awful. Class over, I forgot about it.

But now, a very narrow glimmer of hope says "maybe one day I can tolerate something like this and even enjoy a portion of it." I'm still doubtful. But what I appreciate is that it's a thought. 2 months ago, it never would have crossed my mind. Overall, I feel hope. Do I expect a cure to deafness? No. Do I expect to hear normally? No. Do I expect improvement of what I currently have? Yes. And since my natural hearing will continue to worsen, the possibility of becoming bionic and working toward the improvement of hearing is pretty exciting.

I'm ready now. The dread is gone. Now I feel excitement and hope.

Results

I QUALIFY! So my hearing is even worse than I realized. To qualify for an implant, you have to get below a 50% on sentence recognition in your "best aided" situation. As I'm used to lip reading and getting the majority of a conversation if the enviroment is set up right, I was not confident I would pass the test (or fail it, depending on how you look at it). I was very wrong. Without background noise, with my hearing aids, facing the speaker (where the sound was coming from), I understood 32%. With background noise, I understood 18% of the sentences. These tests were done without me being able to lip read, which means I totally qualify. I had no idea just how much I relied on lip reading.

I also had to have an MRI to determine if my physiology is compatible with an implant. It is. The MRI is not a very pleasant experience. One I will never have to repeat if I get an implant. A lot of my questions were answered today. The surgery is not as invasive as I originally thought. They make an incision behind your ear and place the internal device between your skin and skull. The implant team is all in agreement that I am an excellent candidate.

So now, the insurance game begins. Surgery costs $70,000. Insurance at this point, will pay half. So the expert will appeal my insurance to see if they will cover the entire amount. I'm hopeful!

Tomorrow

The day is finally upon me. I'm getting an MRI in the morning (which, honestly, freaks me out a little), have a 2 hour audi eval and then meet with the surgeon. The thing I want to know most is if I qualify. And of course, if I do, then I will have a whole set of questions. I've been feeling more curiousity than anything else. But now I feel a little nervous. Nervous if I do qualify. And nervous if I don't. If I do, I then have to think about actually going through with it. If I don't, then how am I going to remain in the hearing world? I'm already using so many accomodations. But maybe there are more out there I could be taking advantage of.

I'm so happy the eval is finally here. Now I'll know!

The Eval

The Cochlear Implant evaluation is scheduled!! End of October! It's a full day of appointments beginning with an MRI and hearing exams finishing up with a surgeon consult. Will I qualify to be a candidate??? Who knows! I'm a little nervous. But mostly I just want to know if I qualify. And if I do.......

Good and Bad

I'm so super disappointed in my hearing aids. I can not hear on the phone with them. At all. Not even my husband. There are so many things that have to be done by phone. The good thing is, though, that in today's world of technology, there is a lot that can be done through email and text messaging. I'm so grateful for that!

I've contacted the implant clinic. Waiting to hear back to schedule an evaluation!

Better

After going back to the audiologist for two different adjustments, I'm now recognizing that these hearing aids are helping me. It's not huge improvements, but it's slight. And any improvement is a good thing. The audi thinks it will take a few more adjustments as they are tweaked based on how I'm using them. The technology is pretty amazing and they record how I use each program. That information can be translated and help the audi know how to change them. I went to a small family gathering the other day and was pleasantly surprised to hear some of the conversation.

New Aids

I was fitted with my new hearing aids yesterday. Thus far, I am unimpressed :( Sound goes on for longer which might not make sense to someone who can hear normally. I forgot that sounds have depth and layers. For example, the kitchen timer went off this morning and the "bzzz" of the timer started with a low buzz and ended with a high buzz. I had only heard the low buzz before. I didn't realize there was a high bzzz when the timer went off. But I can't hear my husband or my children any more than I did before. Actually, I think I may even hear them a little less? Their voices seem lower to me, a little muted. I'm hoping it just means the programming in the aids need to change. Someone came to the door today handing out religious flyers and I couldn't hear her at all. So, I'm a little disappointed.

The Company

I work for great people. I have a great job. With great hours and great pay. I just asked my employers if they could pay for a portion of my assistive listening device (the contego) and they got back to me the next day saying they would pay for the entire thing!! They said they value me and they wanted to comply with the law, so no problem, they will cover it. Great news!

So thoughtful!

Today at church, the teacher came up and handed me some papers before class started. I looked down at them and didn't know what they were. When I looked back up at her, she explained she made an extra copy of her lesson for me, just in case I had trouble hearing her. I was shocked. What a kind gesture! People are inherently good. I need to be better about making my needs known and I'm sure for the most part, people are happy to be helpful. Bless her heart!

Good News

New hearing aids being ordered today! We were able to work it out financially to make it happen and I'm soooo happy about it! I am trying hard to get my hopes up too much but I really hope they make a difference!

Biting the Bullet

I think I'm ready to make an appointment. For a CI eval. I have a zillion questions. But first thing I want to know is how likely of a candidate am I for a successful implant. The Audiology team at the University of Utah are the ones who do the eval, at least here in Utah. I found their website and their phone number to call and make an appointment. Now.... it's just making the call. Even saying that gives me butterflies!

Perspective

When I want to feel close to God, there is a particular place I go to that's very sacred to me. I love this place and I've always been able to hear amazingly well while I'm there. This past week, I went back for the first time since having my second baby. I was shocked to find that I can no longer hear clearly at this place. I guess I thought God magnified my senses while I was there and allowed me to hear so well. But that is no longer the case. I was sad for about 3 minutes. Then I was blessed with incredible perspective.

I don't ever have to "hear" God. I can feel Him. He can speak in ways that my soul understands without my ears. And I felt His presence so strongly that it didn't matter that the sounds around me were mumbled and muted. Really, all that matters is that I make the choices that will allow me to continue to feel His presence and guidance. All the rest will take care of itself. I know He loves me and is guiding me in every moment of my life. And my life is so rich because of Him.

It's going to be okay.

Today I'm.....

Crying. It doesn't look like I'll be able to get new hearing aids after all.

Comfort Audio Contego

This little device is my LIFESAVER. It's seriously the ONLY thing allowing me to work right now. It amplifies sound enough that I can hear in meetings, hear clients and hear other staff members. For some reason, all the staff I work with have super quiet voices. Must be the field or something. If you can only talk softly, become a social worker! The device is also helpful in talking with Evan. He doesn't have to repeat himself 100 times and I don't have to spend 350% of all my energy focusing on his face trying to lip read, hear, and cognitively fill in missing blanks. I need to use it more often with him though. I forget at home, we get used to our ways I guess. But at work, I won't walk into the building without it on, it's totally my crutch now. Love technology! I'm so, so, so hoping my new hearing aids will help me hear better with just aids and not additional devices.

Marriage

My ever patient husband feels bad we can't have normal conversations. So do I. He keeps saying my hearing loss doesn't bother him, that he expects it. Seriously, he is so patient and he will repeat something 10 times if needs be. I hate that he has to deal with it constantly. One day honey, we'll converse without effort, one day!

Isolation

Tonight I went to a family gathering with the kiddies. First of all, I'm crazy to go anywhere with two kids under two. What was I thinking? Pure chaos. When I wasn't chasing kids or calming tantrums, I was trying to join in on the adult conversation. Why do I try?!!! I would rejoin the group, try to figure out who was talking then stare hard at them trying to figure out what they were talking about. Someone else would comment and I would shift attention to the comment to try and fill in the conversation holes. Main speaker starts talking again, I shift back to her. Still trying to figure out the topic, let alone what she's saying about the topic. Someone notices I'm not getting it and try to help me. But they are talking while other conversations are happening and a bunch of kids are running around. I still have no idea what is being said. I just fake it and act like I'm understanding...... again!

It would have been easier to stay home. I certainly did not gain anything from going. Should I just avoid all gatherings? Of course not. But oh, I so want to!

Today I Wish

That I could hear YouTube.

GICH

Today I'm grateful I can hear the blinker signal in my van (aided of course).

"Signficantly Disabled"

I'm applying to Voc Rehab for financial assistance to get new hearing aids. They sent a letter to me today informing me I am elgible for services because I am "significantly disabled." That little phrase stood out to me above the entire rest of the letter, which is a whole page long.

Really, I've never thought of myself as disabled. How crazy is that? Hearing loss has been with me for as long as I can remember, it's just a part of who I am and how I am built. I've accomplished almost every single goal I've set out to acheive regardless of any hearing limitation. I moved away from home when I was 17 to start college. I went straight from high school to a university. Graduated with two degrees and managed to serve a mission too. I underwent all the training and testing to become a licensed therapist. After licensing and establishing myself in a career, I married and began my family. My life is AMAZING. I couldn't ask for any more.

But then I remember. The hurt feelings. The tears shed. The discouragement. The awkward conversations. The isolation. The anxiety of socializing. The fear in every new situation. The panic when I've missed some important piece of verbal information. The faking it. Being misunderstood. The phone, oh the phone, such dread. The "feel like an idiot" feeling. The meetings. The constant disclosure. The withdrawn behaviors. The anti-social feelings. The hatred of background noise. The worry of adjusting to voices. The concern that technology can't keep up with me. The friends lost. The conversations that could have been.

I guess I am significantly disabled. But I'm going to fight it til the day I die! I am NOT giving up. I am going to continue to live, to risk, to be vulnerable, to serve and to love (just with a whole lot of accomodations)! And bless Voc Rehab for accepting me as a client, I am grateful.

What I Know

I'll admit it. I don't know much about cochlear implants yet. Most of what I know has come from people who have been anti implants. My deaf ASL teacher at BYU would tell us horrible stories of babies being implanted by this terrible technology that they could never remove from their brains. Family members often mention that getting implanted means you can never have an MRI or CT scan, which of course is a problem if any health issues come up. And you hear about the people who regret having it done. Who feel it didn't work for them. And then there's the scary idea of having all your remaining hearing killed when you get implanted.

Thankfully the last two years, I've interacted with several people who LOVE their implants. None of them regret it. They speak of how well they can hear AFTER rehabilitation. They all recommend cochlear implants.

I just started doing some research finally. I found out there is a way to have an MRI. So much for that myth.

Deaf?

I've never thought of myself as deaf, never. My sister insists I am. Recently another person threw it in my face too. I still don't think I am. But this morning I started thinking about what I can hear without my hearing aids in. I can hear the shower running if I'm in the bathroom. I can hear my blow dryer. And I can hear Evan when he very loudly tells me in my ear he loves me right after we turn out the lights for the night. I can't think of anything else I can hear without my aids in. Maybe I am deaf.

Sunday School

I get so used to not hearing in most situations that I forget I'm not hearing. That may not make any sense to anyone else! Today in Sunday School, this sweet sister in the Ward asked if I was hearing the comments from other students. I responded no and she insisted the teacher take the microphone to everyone who made a comment so that I could hear it. That was very thoughtful of her. Then the teacher broke the microphone, it was actually really funny how it happened. So then not only was the microphone unavailable for student's comments, but could not be used by the teacher anymore either. This sister patted my back and apologized. Really, it wasn't a big deal to me. I'm very used to sitting in classes and not hearing. I am a deep thinker, it's very easy to check out and get lost in my own thoughts. When she brought it to my attention that I was not hearing other people's comments in class, I remembered I wasn't hearing them. But up until then, I didn't think about not hearing. I just checked out and then checked back in again when I could hear. No biggie, I'm used to it. Some days I get more out of Church than other days. And that's okay.

Heavy

What a week it's been. I've had so much on my mind since Tuesday. I can't stop thinking about getting a cochlear implant. It's always been something that was "someday" and all of a sudden that "someday" seems awfully near. I am going to start doing some more research. For right now, I'm not ready to take the plunge. I need more time to think about it and prepare for it. I'm so grateful there is a more powerful hearing aid available and I plan on getting it soon!

Dread

I've been dreading today for the past few weeks. Today I got my hearing tested. And I've cried ever since I left the audiologist's office.

It's bad. Shocking. It's so bad that I was told the one thing I didn't want to hear. "Your hearing loss is so profound, you could be a candidate for a cochlear ear implant." Noooooooo! Not yet, really???

But there is one more hearing aid out there that is powerful enough for my loss. Just one. And thus the process begins. Jared, the audiologist, says the Phonak hearing aid will blow me away. He said "it will be the difference between night and day for you." Oh, how I hope he's right!

Driving home, I contemplated what it meant that my hearing is bad enough to qualify for a cochlear implant. Most people don't understand just how bad your hearing loss has to be for such a procedure. Hearing loss is on a spectrum from mild to profound. A mild loss is a 26-40 decibel loss. A profound loss is 91 decibels+ loss. Speech occurs in the 10 to 50 decibel range. My hearing loss is now severe to profound, meaning unaided I can not hear any speech, no one's.

While thinking about all this on the way home I realized something. Aided, I can hear my children. If my hearing is truly that bad, then every single time I hear my children, it's a miracle. My days are full of miracles. Words can't express how grateful I am.

Children

It's no secret that bearing children has taken a toll on my hearing. A big toll. I've started the process of getting new hearing aids. Part of the process is meeting with a bunch of professionals- ENT's, audiologists, etc. Each one, after finding out that pregnancy and childbirth impacts my hearing, asks me if I am done having children. Some people think it's inappropriate for them to ask me this. And it probably is. But they have a glimmer of understanding. They know how a hearing loss impacts every single area of life. They know somewhat the incredible risks I am taking in bringing children to this earth.

But the only way I can answer that question is this:

Have you met my children? If you have, you wouldn't be asking me if they are worth the risk. If you haven't, I promise you are missing out.

The Resurrection

I met Evan when we were both missionaries in Chicago. After having served a 6 month assignment in "the city", I was being transferred to an 8 month assignment in "the suburbs." My soon to be companion, Sister Pearson, informed a fellow Elder in the area that a certain Sister Kone was coming. And Sister Kone had hearing problems. Elder Scoresby's first response, "she must be looking forward to the Resurrection" was how I was introduced to the man that would become my husband exactly six years later.

Evan says shortly after he met me, he had the distinct impression that I would one day be his wife. He never made my hearing an issue. Now, six years later, it's crazy to look at the charts and see how much I've lost in just a few years. I go through adjustment cycles with each major drop. Evan says he does the same. And then he reminds me- we are looking forward to the Resurrection. And he (as well as Sister Pearson) have compiled lists of things they are going to have me listen to. They want to be part of my wonderment when I hear perfectly.

Memory

My first moment of realization that I couldn't hear as well as others occurred in primary when I was around six years old. The girls in my class were whispering to each other, sharing wonderful and exciting secrets. They turned to me to share, their mouths opened, nothing came out. Silence. They looked at me. Somewhere in their 6 year old heads, it registered I was a person who did not get it. They never tried again.

One of the things I'm looking forward to in the resurrection-- to hear whispers.