Turning the damned thing on; or, what kind of Mickey Mouse setup is this anyway?
Driving across the MacDonald Bridge to the activation appointment, Husband and I confessed to each other that we were both hella nervous. More nervous than before the surgery. Or nervous in a different place, anyway.
It took quite a while to unpack all the basic compontents, which each come separately packaged, and about which more later. 'Helen', the audiologist I will be working with from now in, showed me how to put the basic unit together and then she put it on. I was almost surprised to discover there really is a magnet under my skin and the headpiece really does attach!
Helen handed me a card with a range of comfort levels on it - from "inaudible" through "barely audible", "very soft", on through "comfortable" "loud but comfortable", up to "painfully loud".
"You're going to hear a series of beeps," she said (I was part-lipreading, part reading notes Husband was writing for me). "When you do, I want you to indicate on the card how loud they are and we will adjust them."
I swear, as God is my witness, when she said "You are going to hear a series of beeps," my internal response was, "Yeah, right!!!" I just could not let my guard down and believe this was going to work.
She turned to her computer - which my CI was plugged into - and I grabbed Husband's hand.
And then, I heard a beep.
It was deep inside my head... as if that "silent voice" that you hear in your mind suddenly vocalized to you. I was astonished. I jumped in my chair and my head snapped involuntarily. I gripped Husband's hand. There were more beeps now, and I was struggling to calm myself down enough to remember what we were supposed to be doing.
"Uh...uh... s-soft... soft, I would call that," I stuttered, jabbing at the "soft" level on the card. "Okay, I'm going to turn it up," Helen said. I heard what she said and understood it. She turned the sound up. "Yes, now, now it's louder. That's, uh, comfortable." I looked over at Husband and burst into tears.
"Ahh," Helen said, reaching for a box on her shelf. "This is where we get out the tissues."
I sobbed into the tissue. "I don't think I let myself believe it was going to work," I said. I looked up and Husband was crying into a Kleenex as well. And so, I realized, was Helen. "You have the best job in the world," I blurted out.
Once we all composed ourselves, there was a lot of work to be done. Each of the electrodes had to be individually tuned to a level which was loud enough to hear but not uncomfortably loud. I realized that as long as I was facing Helen or Husband I could hear and understand whole sentences, although everyone's voice sounded like Mickey Mouse on helium. (Interestingly, I could not tell Helen's voice from Husband's initially, although as the appointment progressed he started to sound like his own voice again.) Helen was surprised that I could understand so much so quickly (she'd only had two other patients who could understand complete sentences at activation, she told me - one, an 81-year-old woman) but told me that of course the Mickey Mouse effect was normal and everyone experienced it.
The whole process took about two hours and was pretty intense. I realized how much of this is going to depend on me; Helen can't hear what I hear and relies on feedback from me to tune the device. I, however, don't know what an implant is "supposed" to sound like, so I hope I am making the right choices regarding loudness levels and so on.
Helen asked if mechanical noises - knocking on a desk - sounded different than more variable, organic noises like voices. Oh, yes, I assured her. Very different.
We later saw 'Stacy', the speech language pathologist, who asked me some questions with her mouth covered by a black hand-held screen (so I could not lipread). Although I had to ask her to repeat the first question, I understood all of them and responded correctly.
As we left the clinic the audiologists reminded us that it was going to be difficult in noisy situations, and that it is a "noisy world out there". As we strolled down the sidewalk in Halifax I caught tiny snippits of conversation as people went by - just noise, really, rising and falling as they passed. We walked past an HMV store. I stopped dead in my tracks.
"Music???" I said.
Husband laughed. Yes, they were playing music outside the store to lure in customers. I could tell that it was melodic but couldn't identify what it was or even what genre it might be.
We went out to dinner that night and it was really hard. Everyone in the crowded restaurant sounded as loud as Husband. There's still quite a ways to go to figure out how to understand this thing.
They sent us home with a great big box of manuals and videos and accessories and gadgets, some of which were a complete pleasant surprise because I didn't know they came with the original kit.
The CI itself, for the techno-curious, breaks down into these components, and when not in use, it's pretty much put away broken down this way, too:
You'll note there are three earhooks in this picture; all three came with the CI but each has a different purpose. The standard one is just what the name implies; the t-mic is best for use with telephone and using with t-coils and other assistive listening devices (some people, like me, however, find it gives the best day-to-day results, so it is my usual hook), and the extremely cool direct connect earhook, about which more later.
The whole thing comes together like so:
One of the accessories I wasn't expecting but was really glad to get right away was a direct connect cord. Believe it or not, when I am wearing the direct connect earhook, and plug this cord into that earhook, I can plug an audio device like my discman or my computer directly into the CI and therefore directly into my cochlea. Isn't that amazing? This, for example, is how it connects to my discman.
When I'm wearing this setup, I can hear ambient noise and also whatever I am plugged in to; but an external listener cannot hear the discman or computer. For now, I've managed to listen to some of Husband's music with it (music is MUCH BETTER through direct connect than through the air) and done some computer gaming, but I need a lot more practice before I can interpret such complex things being piped directly into the cochlea.
Well, hearing is all very well and fine, but a girl has to look good, and I was tickled pink that they threw in some of the snap-on covers that let you change the colour of the unit. I don't know how well you'll be able to make this out, but here are the four "blending colours" (designed to blend with hair, obviously)and the four "Sophista metallic (don't you love marketing?) colours" which are dark metallic green, blue, purple and (on the unit) red. Very sharp if I do say so.
Finally, this is what it looks like when I'm wearing it, more or less; normally in daily use my hair would probably cover the headpiece (disc) more because I'd try to get most of it out of the way of the connection between the magnet and my scalp. (At least most of the bald spot is covered now but in order to achieve that, I'm dead shaggy and badly in need of a haircut!)
It's been an absolutely wild two days and there is so much more to talk about but this post is way too long as it is. I will just finish by adding that when I got home I begged Mojo (the vocal one) to meow for me. "Make a noise, Mojey! Come on. Meow! Come on! Make a noise!" No dice. So I made the ASL sign for "hungry".
"MEOW!" he bawled. I hear ya, brother.
[NOTE from XE: My CI won't look exactly like this, since it's made by a different manufacturer. I also turned down the various color panels--especially the leopard print!!]
E-MAIL, BLESSED E-MAIL
And even more fun is the e-mail she send this evening. She's a gracious and generous writer to be telling me all this stuff. I feel very lucky she stumbled on my blog. Talk about synchronicity and serendipity!! Thanks, Ronnie...what a gift!
...
I had convinced myself quite seriously and sincerely that there was no
possible way this was going to work so I was completely astonished when I heard the first soft "bong" inside my skull. That's how it felt - like the noise was *inside my head*, like the "voice in your head" had suddenly vocalized. I mean, I can't *describe* how astonished I was, and that was after only a year of deafness. You've been deaf a lot longer than that, so be prepared :)
The most important thing I want to tell you is not to be put off by your first experiences with the implant. (As in, the first day or days.) I remember while waiting for my implant, I posted on my blog about a website I'd found where a guy posted sound files of what his first implant sounds sounded like. (He ran a sentence through some kind of filter until it was as close as he could get it to what it sounded like on activation, and then after a couple of weeks). I noted that it was ironic that, being deaf, I couldn't hear them so still had no idea what to expect!
Well, after posting that message to my blog, something strange happened. I got one email from a friend, then another. Then another and another. They were all, "out of the blue", urging me "Not to be discouraged" when I was activated, "Not to be frightened" of my first results, "Not to give up" if things didn't seem to be going well at first. I thought it was awfully strange, this sudden outpouring of concern for my emotional strength following activation. It wasn't until much later, when I revisited the website, that I put two and two together. After my blog post, my hearing friends went and listened to the files and were so horrified by what they heard that they immediately rushed to reassure me (without, of course, telling me
*why*, so as not to scare me).
Well, as it turns out, my own first sounds weren't nearly as bad as the robotic voice on that website so they needn't have worried. Everybody's voice sounded identical, and far too high (Minnie Mouse after inhaling helium). It was not until the night of the first day that my husband started to sound like himself again.
I am going with the assumption that your path back to hearing is going to take longer than mine, because your hearing loss has lasted much longer. I don't know how much memory of sound you have. Whatever memory you have, begin exercising it. Think about how it used to sound to hear a car go by, a dog bark, a person speak, music playing. The reason is because this is a very real training process you're going to go through in the beginning. You are going to hear an indecipherable "blat!". Then you're going to think (in nanoseconds), "There is a truck over there." And your brain is going to go, "Wait, wait, that 'blat' was recognizably what a truck horn used to sound like." And soon the connection between that sound and "truck horn" will be automatic and part of your everyday life. So you will need to use all your memory of sound to help connect the dots. How people deaf from birth are able to successfully learn to
hear with them is a real miracle to me, because at least in my case, that "training" relying on my memory of hearing was a very real and present process. Of course, the human brain is an inconcievably amazing instrument, and yours will do whatever it needs to do to connect the dots.
However, deaf-from-birth people do learn to hear successfully with them, so even if your memory of sound is not strong, it isn't a non-starter.
As for using the phone, I would tell your sweet but overexcited friends to cool their jets a little bit :) I was not able to recognize speech on the phone for a couple of weeks, I believe, after the activation. Your mileage may vary and I hope you can do it from day one, but I wouldn't encourage you to expect to be able to. [NOTE from XE: You mean, like, don't call us, we'll call you??]
Finally as for music: music is really, really complex and is the most challenging thing to hear and understand. Don't expect to hear anything recognizable as music right away - if you have unrealistic expectations I fear you may you fool yourself into being disappointed too early. Do keep in mind that your recognition and enjoyment of music will improve and improve over time (in my case, it did dramatically, but the first several months music on the radio was a muddy mess of percussion and sound). If you have a CI processor as I do that can plug directly into devices like iPods or computers (one of my processor "earhooks" has a place to attach a cord which I can then plug into any standard-sized speaker inlet), you'll find it 10,000x more enjoyable. You may also find, as I do, that live music and music played on a good-quality stereo is much much easier to interpret and enjoy than music from the kitchen or car radio.
...
I suppose I've bored you into a coma, or else I've terrified and worried you, neither of which was my intention. It's just that I know how you're feeling right now - you simply cannot IMAGINE how this is going to work or feel, and it's the scariest part of the trip, much scarier than the surgery, I found. So I want to make sure you and your support system are not needlessly disappointed (i.e. expecting to use the phone right away only to discover you can't) while also sending you every bit of my support for the exciting adventure you're about to go on as the alien noises rapidly change and morph and every day you amaze yourself by discovering something new (the clock ticking on the wall of my office irritated me. Hooray! And yes, I overhear conversations. You do *not* want to hear cell phone conversations, I promise you, but you will).
I hope you are feeling encouraged by all that you have posted here. I think it's absolutely astonishing that this miracle is actually possible! You are so lucky to have the opportunity to hear again. And all the support and advice you are getting from Ronnie is so valuable.
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