Trouble in paradise?

Trouble in paradise?

It happened. I had my first major issue with my processor last night. Hubby had a YouTube video on that had REALLY annoying techno music and it was really grating on my nerves so I started to ask him if he could turn the sound down. As soon as I began to speak, my voice sounded like I had become possessed by demons. Then came high pitched squealing and whistling. Everything sounded horribly loud and distorted. I quickly removed my processor and checked it to see if there was anything obviously wrong. Put it back on, and the same thing happened. Voices sounded like a voice scrambler was being used, deep, robotic, and garbled. Tried changing programs and it seemed to work but after a few minutes the garbled sound returned. I was devastated!

They say when it rains, it pours; well that was me last night. After coming to the realization that I no longer had any natural hearing left, to then lose my processor on the same day was a massive blow. I pretty much fell apart in a million pieces and a puddle of tears. Of course the worst scenarios played through my head; what if the implant has failed? What if my ability to hear has suddenly degraded and I never hear properly again?

I packed everything in to my dry box for the night and said a prayer that things would be better in the morning. Shot an email to my audi, begging for her to squeeze me in today. Woke up this morning and with great trepidation, hooked up my processor. The garbled sounds were gone, but everything was painfully loud! I had to turn down the volume quite a bit to keep from wincing with every sound. My audi responded first thing and said she could squeeze me in at 2:30. 

When the time came for my appointment and I got hooked up, everything appeared to be working normally! Part of me was relieved while the other part was frustrated. What on earth would cause that kind of “malfunction”. I really don’t want it to happen again but since we don’t know why it happened, we have no way of knowing if it will happen again. We tried another processor with the same map and while I didn’t get the distorted sounds, it too was painfully loud. So we remapped my processor and turned down the levels on a few of the electrodes to where it was comfortable and stored both the new and old maps in separate programs. This way if I find I’m not hearing so well with the new map, I can go back to the old. 

The last thing we did before I left her office was to check the hearing in my left ear.  I sat in the booth waiting for her to start the test and after a few minutes she got up and came in and said, nope – it’s gone. I really didn’t think she had even started the test. So, I was correct… There is no natural hearing remaining.

Are not two sparrows sold for a cent? And yet not one of them will fall to the ground apart from your Father. Matthew 10:29

However, today was not all bad. I heard birds chirping for the first time since going deaf! Not just that, I actually heard the fluttering of their wings as they flew around the shop entrance I was about to go in. I stood there for a good couple of minutes with a big goofy grin on my face, reveling in the sound. They were just plain sparrows, but are honestly one of my favorite birds – as a child, I rescued countless sparrows (much to my parents chagrin, I’m sure). How fitting that the first birds’ song I hear would be that of a sparrow. Once again, I am reminded of the blessing of my bionic ear and the beauty of this noisy world. 

3 weeks post activation

3 weeks post activation

Happy Birthday to me. Today is my 40th birthday. Funny, I always had a feeling that I would be deaf by the time I hit 40. Ironic that I’m celebrating my 3rd week “hearing” today. Sounds are beginning to seem more natural and I am enjoying hearing again. That said, I have a long ways to go and at times I find myself getting frustrated with my head for not working right. Voices are still the worst. 

I really wish I could sit down and have a little chat with my brain and make it start listening properly. When I hear strangers speak, it’s nothing but chipmunk chatter. Sure, I can usually understand the words they’re saying, but it all sounds so unnatural. It’s frustrating because I can remember what voices sound like and I find I am getting mad at myself for not hearing the way I should. But then again, I “shouldn’t” be hearing anything at all but thanks to technology, I can! I am by no means complaining or regretting my decision to get this implant, but simply being honest about the process. Even with a “rockstar” activation, it’s not all sunshine and roses. I went to a support group meeting on Saturday and one thing that was very clear, is that no two people have the same journey or the same results and I truly am blessed with how well I’m coping thus far. The one thing we all have in common? We all had to work to improve our ability to hear. 

I do have some great technology that works hand-in-hand with my processor; namely my Compilot. This is a small Bluetooth enabled device that pairs with other Bluetooth devices and streams sounds directly to my processor. I also have the TVLink and remote mic that pair up with my Compilot. The TVLink hooks up to my TV and the remote mic can be used to hear any individual person at a distance, or up close when there’s lots of background noise. The Compilot also pairs with my iPhone and tablet for direct streaming of audio to my processor. 

My cool Compilot!

This tool has been integral to my success thus far. The beauty of the compilot is it can stream audio direct to the processor without all the background noise. If you’ve ever worn noise cancelling headphones, that’s probably close to what it’s like – just the sound you want to hear without all the background chatter. My brain hasn’t figured out how to filter all those unneeded sounds yet, so the compilot accomplishes that for me. It’s remarkable to hear all the small sounds on TV that I’ve never heard, like footsteps as someone walks or sighs or even just breathing. I call it my ninja sound, especially when I’m streaming from my iPhone as no one has a clue that I have music playing in my head. It’s pretty cool!

At this point in my journey, I have to really focus in order to understand speech. It’s as if I have to actively tune my hearing at all times. Regular everyday sounds come in, no problem, but to catch what someone is saying, I really have to work at it. I notice this mostly when I pass by people conversing – I hear their voices but unless I actively “tune” my hearing I won’t catch a single word they’re saying. Maybe it’s just because I’m out of practice when it comes to listening, or perhaps it’s because my hearing is more mechanical, I’m not sure. What I do know is that it’s an exhausting process. When I do engage in conversation, I still have to work extra hard to actively listen. It really is like a switch, when I get tired, that switch flips off and I could be right there facing someone talking and miss everything they say, but with a little focus, their speech becomes perfectly clear. It’s like I have a super power and have to work on honing my skills. Regardless, I really look forward to the day when listening becomes natural again. Until that day, I’ll keep working on my ninja/superhero hearing and loving every step of the process!

2 weeks post activation

2 weeks post activation

Activated! My cool AB Naida Q90 processor.
I have been hearing for 2 weeks now and all I can say is I’m still in awe. I was blessed to have what is considered a “rockstar” activation. To put it simply, when they hooked me up to my processor and switched me “on”, I was not only hearing sounds, but actually understanding speech. What a remarkable experience to go from zero sound to hearing. I heard the swoosh of a piece of paper as it was pushed across the desk, the rustle of plastic wrap as a package was unwrapped, the zip of a zipper as a bag was opened, and the rumble of my husband’s stomach as he patiently waited, seated behind me. These were just a few of the first sounds I heard. They didn’t all make sense to my brain or sound the way they should have, but I HEARD them!

Voices sounded extremely mechanical – like everyone breathed in helium or a bad rendition of Alvin & the Chipmunks. Even after two weeks, voices still have a very mechanical quality to them, but the sound is getting better. At first, I could not differentiate between a man, woman, or child – now I find it easier to tell men & women apart. 

I am quickly realizing how blessed I have been to have such a stellar activation. I hear often of people who struggle to make out words months after activation. Even so, it’s not an instant fix for me. I actively practice listening several hours a day. I use various apps and programs that are specific to training your brain to listen as well as simply listening to speech (TV/talk radio) and my favorite songs. They sound very different than the way I remember them, but in theory, my brain will eventually “click” and sounds will seem normal again. 

I can’t wait to get rid of the chipmunk voices, but the sounds I hear every day are nothing short of miraculous! Did you know that fluorescent lights make a pulsing sound? Light switches make a distinctive click when they are switched? Dog toenails clip on tile floors? My shoes squeak when I walk? Fabric whooshes when it rubs against itself. These are all sounds that I have NEVER heard, even before going deaf. My brain hasn’t figured out how to filter all these sounds out yet, but soon it will and I won’t notice those little sounds so easily, but right now I’m loving every little new beep, chirp, or click I hear. 

Already I have done things I never expected – talked on the phone; watched TV without captions; heard someone speak from another room AND understood what was said! It is exhausting and takes an enormous amount of concentration to get my new ear & brain to work together and it’s still far from perfect. Situations with lots of background noise or poor acoustics are nearly impossible for me to follow but hopefully that will come with time too. I have months, if not years, of practice & training ahead of me with several more mappings (adjustments & programs made to my processor to help optimize my hearing experience). For now, I am basking in the glow of sound and thanking God every day that I live in an age where technology can give back my ability to hear. Every day is a new experience and a step toward better hearing.