I haven’t written much lately because things have been very stagnant. I have been working on adjusting to my new programs – music and restaurant. They’re both very good, but I’m finding overall I still have a long way to go.
I’ve used the restaurant program three times now, and it is genius. I call it “restaurant” because that’s the situation I’m most likely to be using it in. It turns off the background noise (it actually turns off the whole external microphone) and then zooms in to the sound directly in front of me. One of these was a one-on-one lunch with someone I’d never met before (who also has a CI – more on that later), but the other two were meals with 5-6 people in very loud places. I was able to not only follow the conversations and participate, but understand the waiters – in one case, the waiter was speaking from completely the opposite end of the table from me. That’s a first. Half the time even when the waiter is right next to me I have to have Ed tell me what they are asking. So there’s a huge win.
The music program is the exact opposite of the restaurant program. It is simply all sound with no tricks or compression of frequencies. With simple songs – voice and single instrument – it’s doing really well. It’s really loud, though, past my threshold, so I have to turn it down each time I use it. On complex songs, or even worse orchestrated pieces, everything is mostly still just a jumble of sound that I can’t make sense of yet. It’s better with songs I know, of course, but even then it’s tough. But I refuse to give up on it. This is one of the most important pieces for me. I suspect just like with speaking voices it will get better the more I expose my brain to the new sound. Live music is also 10x better than digital music. My parents’ neighbor hosted a house party last weekend where the band was just two people. It was full of songs I’d never heard before, but I could clearly hear the instruments and voices. I even got some of the lyrics. Missing lyrics is still one of my biggest frustrations, I wish more albums came with the lyrics like they used to.
My biggest complaint right now with the music program is not with the implant but with the hearing aid. This new hearing aid, the Phonak Naida Link, if you recall, will be connected to the implant processor at the end of this month. Right now it only has one mode – the “auto-adjust” mode. I had a hearing aid before that did this and I only kept it for a year because I didn’t like how it adjusted things, especially music. I feel like with this hearing aid, I’m having a really hard time find the correct key of a song. Maybe that’s the implant, I don’t know, but it seems like it’s coming more from the hearing aid side – I’m still hearing two distinct sounds, so I can determine which is which. I feel like there’s some sort of auto-compression going on that is making me “hear” the high frequencies, but it messing with the pitches I’m hearing. I’m hoping that when the Link and implant are connected that when I switch the implant program to music that the Link will also adjust to similar settings. We don’t know enough about the connection yet to be able to say for sure what’s going to happen. If that doesn’t work, I do think we can make a program on the hearing aid specifically for music, but I am not sure. I have a button to change programs on it if I want, which implies to me that I can have multiple programs.
Speech is doing just fine. Is it perfect? No, it’s still far from it. But I can cope so much better than I could before. Each day gets a little bit better, I think. Sound is beginning to be one channel from the center of my head. It’s still two distinct and different types of sound coming in, but it’s feeling much more blended now. I just need to keep working at it. I haven’t had a lot of time or energy to work on my audiobooks or other listening exercises lately, so I’m sure that is part of why I’m feeling stagnant.
I’m still hearing something new almost every day. My life is very routine, so you wouldn’t think there would be too much of that, but there is. The things that I can hear only in my right ear through the implant still almost freak me out. I smile every time I hear my car beep when I lock/unlock it. Or when I scan my badge to open the door at work. I had my Remicade IV for Crohn’s last week and learned that the IV pump makes noise each time it pumps. I had no idea.
It is definitely still a journey. Every day is a new day to hear. I had lunch last week with a guy from the Bionic Ear Association discussion group – he’s had his for a little over a year. He says he’s still learning new things and hearing new things. It was really great to talk with someone who has recently gone through the same things. His hearing loss is even caused by the same as mine, so that was interesting to talk about. I’ve never met anyone else before with Autoimmune Inner Ear Disease. Talking with him reminded me of everything I went through to get that diagnosis and the realization once you have the diagnosis that it doesn’t actually matter because the result is the same. I may be able to hear with my HA and CI, but I’m still deaf and will always be deaf. It’s so different from what normal hearing people experience – it really is like comparing apples to oranges. I remember much less of what oranges taste like*, so I’m not missing them so much anymore. The apples are pretty satisfying.
*this is actually true – oranges used to be one of my favorite foods, but I haven’t been able to eat them for the majority of my adult life because they really activate my Crohn’s disease. I usually do pretty well eating apples though.