In Between

Well, it’s been over two weeks now since Dave’s surgery and his activation date is under one week away! This is a great place to be in! It really feels like this weekend we passed over the hump. We are now past the hardest part; the worst is behind us, and now we are moving toward something much more hopeful and exciting – activation next Monday! Woohoo!

Yes, beforehand, approaching a surgery that would take away the remainder of my husband’s natural healing and insert a foreign body into his head was not fun, not something to look forward to. But it was a necessary step that had to be taken. Praise God that it went SO well and that we are beyond that point now. For the most part, Dave has fully recovered, and life has gone back to a “new normal.”

As a family, we’ve done well fully utilizing all of the American Sign Language (ASL) we know, at times stretching it into gestures that just get our point across. My first interpreting opportunity came just moments after I saw Dave after his surgery. A member of the surgical team walked in to give us the report on how it went, and I suddenly found myself translating for her. Wow! There have been times where I’m at a loss and I make up a sign because I know it’s something that Dave will understand, and in the moment, getting the point across to him is all that counts. Several times I’ve found myself leaning over my shoulder to whisper to the person for whom I’m interpreting, saying: “That sign wasn’t really ASL…” Knowing ASL has been a God-send for us during this period of total deafness, and as much as possible, I have attempted to maintain the integrity of the language.

The kids have done a great job trying to use the signs they know or looking to me to show them the signs they need to get their point across to Dad. Sometimes they’ve sought me out, saying, “Mom I need you to interpret for me…” Other times I’ve heard them futilely trying to repeat something to Dave, and I’ll call out to them, “Sign this, then that, then that…” The permanent change of Dave’s deafness has been sinking in for our children. At first Josiah continued praying for “Daddy to get the cochlear implant.” We had to show him diagrams of it, explaining that he already has part of it inside his head. We’re just waiting for that part to heal before he can turn on the outside part. Last week, Micaiah decided to write his Daddy a note, telling him that he misses him, and that he will always remember Daddy’s natural hearing. Just the other night at bedtime, Miriam told me that she was sad. I asked her why? And she said, “I’m sad because Daddy is deaf. He can’t hear us anymore.” I agreed with her that it is sad, and tried to comfort her with the fact that in one week Daddy’s cochlear implant will be turned on and he will hear again! We have decided to go down to the Mayo as a family for Dave’s activation, this time bringing along the children and staying overnight in a hotel. This way, we can experience the excitement and joy of Dave’s activation together.

Outside our home, at work or at church, Dave has quickly developed a new habit of carrying around a trusty white board and marker. He’s actually said that it has been a bit of a relief being deaf because he no longer has to struggle to hear. In a sense, communication between him and others has become very black and white. If something is not communicated in print –whether in email, instant messaging, texting, or on the white board – then it is clear to all that Dave is not aware of it. Although Dave is still doing a lot of lip-reading, everyone around him knows that he is deaf. It is interesting to note that when you tell someone that you are hard-of-hearing, no matter how very little hearing you might have, they expect you to be able to hear, but when you tell someone that you are deaf, the expectation of hearing is completely gone. The relief of this pressure and the reduction of ambiguity over what was said, what he heard or didn’t hear, have felt like a huge load lifted.

Dave is no longer trying to hear… that is until Monday, August 15th.

Once Dave is activated with the cochlear implant, when its 22 electrodes are programed and turned on, then Dave’s efforts to hear will have to be renewed with vigor. Many people do not really understand the huge learning process Dave has before him. His brain literally has to re-learn how to hear! And not just how to hear voices, but how to hear everything! The sound of water, the sound of foot-steps, the sound of paper rustling, the sound of his cell phone buzzing email alerts to him, etc. There may be sounds Dave will hear that he’s never heard before, or certainly that he hasn’t heard in a very long time.

And it will ALL sound different to him. It will no longer be natural sound; it will be electronic sound. It is like his brain will have to learn a whole new language. His brain will have to take each sound, isolate it, identify it, and then assign it its place. Once he realizes that a certain sound is just the refrigerator or dishwasher running, for example, then his mind can assign it into the background and not pay as much attention to it, allowing the voices to be drawn into the foreground. And even with voices – there’s no guarantee of what human speech might sound like initially, how garbled or how clear. Some people have said that voices first sound like Donald Duck talking underwater, etc. It will take time for his brain to realize what it is trying to listen to and then clear up the sound. No matter how well Dave’s day of activation goes, this process of adapting and relearning will take months, if not years.

Have any of you ever heard a sample of what it sounds like to hear with a cochlear implant? If not, I encourage you to click here and listen to a sample. As you do, imagine that this is the way you will hear –or someone you love dearly will hear – for the rest of their lives – and tell me if the thought doesn’t make you feel like screaming and pulling out your hair, or feel sick to your stomach with the grief of imagining that this is what it might be like! That is how I felt when I first heard it. I just wanted to cry out, “No! This is NOT what I want for my husband! I do not want something embedded into his skull, piercing into his cochlea, destroying what’s left of his hearing only to leave him with THIS!!!”

And then the whole thing becomes very ironic if you consider cochlear implant candidates themselves trying to listen to those sound samples. It is so indistinguishable that they probably can’t even hear how horrible it might be like to hear with a cochlear implant! But that’s also the entire point. Once your hearing is so far gone, exactly what a cochlear implant sounds like may not matter anymore. At that point, the severely hard-of-hearing person is just desperate for anything that will help him hear better again. It’s no longer about the quality of sound; it’s about regaining the basic ability to hear.

At first the whole idea of the cochlear implant completely turned me off. The thought of the cord going back from the over the ear speech processor up to a magnet that would hover on my husband’s head and connect to an electronic device embedded within his skull completely weirded me out. At a convention on hearing loss years ago, we were in a room surrounded by people with cochlear implants and it gave me the heebie-jeebies. But over time, as my husband became more and more deaf, and our communication and family relationships became more and more strained, my perspective changed.

You see, it’s no longer about the magnet on the outside of his head, nor the electrodes imbedded into his cochlea. None of the mechanics of it or the aesthetics of it matter anymore. What matters is that after Monday, August 15th, no matter what my voice may sound like to him, my husband will be able to hear me again. And he will be able to hear our children again. As he learns to hear through the implant, he will be able to begin the process of reconnecting with us and catching up on all that we’ve been missing.

And for this I am truly grateful!!! Please continue praying for us, for Dave especially. We are over the hump, just past the worst of it, and there’s a momentum of excitement building, but there’s still a LONG journey back into hearing ahead of us.

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One Response to In Between

  1. MillerMan says:

    Thanks for the great information here, Karin. It will be a journey, but a great journey for Dave, you, the kids, the family, his friends, and co-workers. I’m looking forward to Causeway to see and talk to Dave so soon after the transmitter is connected.

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