Becoming Bionic — Activation Day

Activation Day, the day for which I’ve been anxiously awaiting came and went, and I’m now officially bionic. It’s a peculiar feeling, really, having this thing in my head making “sounds” that aren’t really sounds that no one but me can hear. But before I get into all that, let’s take a step back…

For those of you who haven’t read any of my previous posts, the story goes like this. I lost hearing in my right ear on October 14, 2014. In an episode of what is quite appropriately named “Sudden Hearing Loss” (that’s the medical term for it.), I was sitting around, minding my own business, when all of a sudden, out of nowhere, I lost hearing in my right ear. One second it was there, the next second it was gone, and it didn’t come back until yesterday, when my cochlear implant was activated. Along with the hearing loss, I experienced severe vertigo (which is only now finally going away) and an unbelievable amount of tinnitus in my deaf ear. The tinnitus would usually run somewhere between 7 and 13 KHz and be so loud that I could hardly think straight. It was so bad that I’m astonished that I was able to accomplish anything over the past five months.

On February 18, 2015, I had the implant surgery done, and it has really been a lot more painful than I expected. In fact, I’m in pretty serious pain right now as I type this, but more about that in a minute. Once the implant was in, the body had to heal and I had to wait for activation. In the meantime, I went on a business trip to Boston, where I co-presented two sessions at a national conference for education professionals, had someone steal my debit card information, and steal all my money (fortunately, the bank gave it all back). Oh, wait, that was just in the past week. But alas, I digress. The point is that life has gone on throughout this process, and I’ve been doing everything in my power just to keep up. But I’m somehow managing…

Flash forward to yesterday, Friday, March 13, 2015. My appointment with the audiologist finally arrived, and I sat down with Kelly (my audiologist), and we went through the activation process. The first thing she did was run a few tests, just to make sure that the nerve was active and my implant and my brain were receiving data from the sound processor (the external component that receives audio input and then transmits the data to my implant in my head via a magnet). It worked! We went through a series of tests to determine the range of my “hearing”, she showed me how to use all the components of my kit (there’s a lot of stuff in there… cables, a processor dryer kit, batteries, batteries, and more batteries, and a couple of remote controls for my processor), and I went on my merry way.

So now comes the hard part. I’ve got to train my brain to understand the signals that are coming in from the sound processor. It’s going to be a long process. As part of my training, I’ve got to read books and listen to the audio version of the book as I read it. I’ve decided to begin my training with Infinite Jest by David Foster Wallace, an 1100 page tome that I’ve already read in dead tree format, but now I’m listening to the Audible audiobook version while reading the Kindle version. It’s kind of cool, actually. I plug a special audio cable into my phone’s audio out jack, and then plug the other end of the cable into the back of my sound processor. The end that plugs into the sound processor is a special Cochlear implant connector, so I can’t just use any old cable. But it works. So I play the audio and read the book on my phone, and no one can hear ANY of the sound, because there really is no sound. It’s all in my head. That’s the trippy part that I’m going to really have to get used to.

So why do I have to train it? Well, my brain is used to a certain kind of signal from my ears. Now, it’s getting a different kind of signal, so the brain has to get used to this new signal and learn how to properly interpret it. That happens through training.

The question everyone asks is… “What does it sound like?” The answer is…. you’ll never know. I can try to explain it, but it’s still not gonna be that close. There are some things online which approximate the sounds, but they’re not really 100% accurate. This video goes through various settings, so you can get a little idea what things sound like, but the reality is that most of day-to-day life isn’t a bunch of isolated sounds, so there’s background noise competing with what I want to hear, along with the distortion produced by the cochlear implant. So, it’s pretty crazy.

As you can tell by the video above, it takes some getting used to. To me, the very first thing I thought was that everybody’s voice sounds like the voice at the beginning of the song Freak-A-Zoid, by Midnight Star, only on helium or something. Music, one of my greatest passions, sounds especially strange right now, and it is going to take a lot of work to get to where I can actually listen to, and enjoy music again. That sucks. That really, really, really sucks.

I went to the grocery store this afternoon, and all the sounds pouring in to my new ear were overwhelming. It was like Lou Reed’s Metal Machine Music come to life or something. NOT the most pleasant experience of my life…. not even close. By the time I got out of there, my head was pounding, I was dizzy, and felt like the world was attacking me with noise. Not fun.

“How does it feel?” is another question I’ve been getting. Well, to be perfectly honest, it hurts like hell. The sound processor rests on the spot where they made the incision, and the magnet that attaches to my implant is on a sensitive spot as well. So after a few hours, it feels like someone is trying to pull my ear right off of my head. I’m guessing that this will improve over time, but right now, at 8pm on day 2, after wearing the sound processor for about 6 hours (I slept late today), it hurts something bad. But I’m trying to tough it out. I want this to work, and I know that if it’s going to work, I’ve got to put in the effort. I’m a stubborn fellow, and I will not go deaf without a fight. Well, I might go deaf without a fight, but I sure as hell won’t stay that way for long.

So I’m five months in to this journey. It’s been the toughest, most depressing, isolating five months of my life. I can’t express to anyone exactly how I feel, but I’m trying. I’m incredibly fortunate to have the opportunity to get this implant (I know I’m only one of a very small group of folks with unilateral deafness to receive a cochlear implant), and I’m also incredibly fortunate to have such supportive people on my side. My wife, my bosses, my co-workers, my family and friends have all been truly amazing throughout this process thus far. I wouldn’t have been able to do any of this without them.

I’m hurting. I’m frustrated. I’m sort of depressed. But I’m okay. Anything real acheivements in life require hard work, and this is no different. I’m not afraid of hard work. I’ve just got to remain positive and keep pressing on, one day at a time.

I’ll keep posting updates, not only for other folks to read, but for me to go back and review. This isn’t going to be an easy journey, and I need to have a running record of how I feel and what I do during this process.

‘Til next time…

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