The last couple of weeks have been hell. I had constant ringing and squealing in my ears that was almost unbearable. I hardly slept, was constantly distracted at work, and was short-tempered almost all the time. Last Thursday I ended up in the E.R. with excruciating ear pain, just to add insult to injury (it’s better now – was partly from my ear still recovering from surgery and partly from the way I hold tension in my jaw when I’m stressed, believe it or not).
This week I went into the audiologist for my first tune up, or “mapping” after having the implant turned on. I got a standard hearing test, but could barely pick out the tones behind the constant barrage of noise in my ear. After the test, the audiologist surprised me by saying he thought I needed to turn up the volume. I actually cringed at the thought…I had already tried that during the first week, and it was excruciating. So I braced myself (literally gripping the table and closing my eyes tightly) and he cranked up the volume.
Surprise! The tinnitus practically vanished! And I could hear when he was talking!
I was shocked. After the appointment, the interpreter and I were saying how counter-intuitive it was to make something loud and annoying even louder…and having that fix the problem. It’s like telling people with ADHD to try stimulants, or suggesting people with arthritis get up and move more. The audiologist said some deaf people’s brains and ears actually struggle with quieter sounds, and do better with more noise and stimulation. He said this happens sometimes – it’s just a quirky thing.
But who cares about the reasons it worked? It seemed to do the trick. Now I’m at the point I thought I’d be on the first day of activation. I can pick out when people are talking and hear environmental noises. Of course, people sound like goofy high-pitched robots speaking gibberish, and noises aren’t recognizable. But that should improve over time. The tinnitus is still there when I take off my processor, but it’s very faint and tolerable. When I have a lot of noise in my ear now, I know it’s because it’s noisy!
My five-year old son Zack is having a lot of fun helping me identify sounds, and I am constantly amused by what my ear is hearing, because I still remember what most sounds are supposed to sound like. But there have been some admittedly cool moments, like when Zack was in the backseat with my iPhone and I suddenly heard a lot of noise – he told me I was hearing a movie he made with my iPhone! I also was driving along at one point and clearly heard a “Mama” sound from the backseat when he was trying to get my attention (because he had noticed my gas gauge was on low). Ironically, Zack’s voice is easier to hear than Tracy’s or most adults, so he’s taking his self-imposed teaching/auditory training duties quite seriously, and using a fun combination of talking and signing with me.
And yesterday I heard one of the most beautiful sounds I have heard since I became deaf – a soothing rhythmic sound like waves of the ocean. It was so beautiful I just stopped and listened for a while. It was a backhoe moving dirt at an SU construction site, going back and forth, and back and forth. 🙂 During a break between meetings, I asked my sign language interpreter Amy if she wanted to go listen to the backhoe for a while with me to relax, but she politely declined, believe it or not. It’s hysterical to know how awful that sounds to hearing people, and then to think about me standing there with my iced tea from Starbucks, sort of rocking and enjoying the noise. My co-worker suggested that some of our autistic students might be willing to go with me if I can’t find any hearing people to tag along – and she was serious. I love my job.
I’m now feeling more confident that the implant will do what it’s supposed to do, and will support my lip-reading at some point. I also like the idea of hearing more environmental noises. And I’m learning how to work with an interpreter while getting some auditory input. So I’m finding my groove. In two weeks, I go back to the audiologist and he will adjust the three channels of the implant for three settings: the phone, everyday conversation and work, and for music. My homework until then is to get a bunch of children’s books on CD and to listen to them over and over. My brain is like a child’s – it needs to hear simple words first with lots of repetition, and then it will be able to learn more complicated speech. I’m also supposed to continue turning up the volume as much as possible – the louder the better. Still seems weird that I would even want to do that!
I think we’re through the worst now, and I’m curious about what the next few months will bring. I’m not gonna lie – the last two weeks have been tough on me, my wife Tracy, and my kid. We’re all grateful for family, friends, and co-workers who have offered support.
On a final note, I just so happened to find a very cool video by a woman in the UK who is a lot like me – she uses whatever is at her disposal for communication and enjoys skipping around between Deaf/hearing worlds and mutations of both:
It looks like the video might simulate implant sounds for hearing people, too. She’s a physiologist, so there’s also some technical info about the implant. It’s also captioned!