The Sounds of Silence

It's been four days since surgery and I can't believe how good I'm feeling. I'm on my feet, no longer feeling as dizzy when I walk, and back to chewing most foods. Reading no longer gives me a headache, and the pressure wrap is off my head. I finally showered yesterday - the high point of my weekend, believe me! The CI is now a sore spot on the left side of my head, nothing more. Though I'm still on antibiotics and pain meds, and though I get tired more easily than normal, I'm so pleased at how quickly I've progressed. It's been a Godsend. Most blessedly, the ringing in my ears has stopped. For the most part. Someone told me that now I know the gist of the Simon and Garfunkel song, "The Sounds of Silence." Indeed I do. And I hope that pulsing, echoing, buzzing silence never returns - good riddance!

Now that I'm rested and my head is clear, I think it's time to try to make sense of what's happened to me since last Thursday.

The true miracle is that I was as calm as I was the morning of the surgery itself. A bit of Benadryl did the trick for sleep the night before (my anxiety-ridden self already hadn't been sleeping well for several nights), and I woke up in the hotel feeling remarkably relaxed. It's funny, though: regardless of how occupied I kept myself, with books and email and conversation, as the time drew closer my chest started to tremble. It's as if my body couldn't forget what was about to happen to it, even if my mind traitoriously did. (I'm sure the fact that I hadn't eaten since some ice cream late the previous night had something to do with this. I wasn't allowed to drink, either. Watching my parents eat breakfast only increased this physical tremulousness, and my lovely father was so nice as to tease me with the full water bottle he was drinking. Bad move, buddy.)

After taking a short walk in what ended up being a gorgeous California morning, we headed to the hospital.

(The BEFORE: my last moments with my left hearing aid. Notice the brilliant weather outside. What a sad day to be detained for surgery!)

I'll say it again, the Stanford hospital is a very open, airy, welcoming place. Once inside, I was still floating in a self-imposed cloud of calm. But even so, my nerves were rattling. Evidence: lipreading while I checked in at the ambulatory surgery front desk (and afterwards, while chatting with the nurses) was much harder than usual. I felt myself stammering, my eyes losing focus, trying to keep my anxiety in that nice little box where it could not escape. Once checked in, we waited and made pleasantries together in the waiting room until I was finally called back into pre-op.

My pre-op nurse was very kind and chatty, just what I needed despite needing to answer her list of obligatory questions. No, I don't have heart or liver problems. No, I've never been pregnant. No, I don't do recreational drugs. The only issue I confessed to was a fear of needles. We made small talk about Stanford and the area, about books and English. Several times she asked me, in response to my physical stature and cardiovascular signs, whether I was an athlete (a question that many other doctors and nurses asked over the course of the day, apparently). I smiled and said, yes, an equestrian. I don't know whether she knew what to make of that!

(After verifying for at least the fifth time, my surgeon marks my left ear as the one to be operated on. Yes, those are his initials. They refuse to wash off completely, even several days later.)

Another source of reassurance: hearing about my surgeon. He's a kind, well-respected guy - something which I could have guessed from my personal encounters with him, but something that was only confirmed several times in pre-op. My nurse, a operating room nurse for 30 years before moving to pre-op, told me that he's the only surgeon she'll work with for OR shifts these days. "He's the best," she said. "He treats us all so well. He's such a gentleman!" And, after he slipped in with a smile, talked to me for a moment, and gripped my hand, I tended to agree. The feeling that I was in good hands made such a difference.

(Trying to look confident even if the whites of my eyes are showing. I wouldn't be smiling if they'd put the IV in yet!)

By far the most stressful part of the entire day was getting my IV in. But we'll skip over that. (A summary: I managed not to faint.) A little more nervous small talk with my parents in pre-op, while trying to ignore the tubes and appendages connected to my body, before it was time. The nurses rolled me out, down the hallway, and through a series of automated doors. I felt almost as if I were being kidnapped.

I don't remember much of the operating room itself (thankfully) except that when I got in, the fear was starting to flow. I stared up at the lights overhead, which looked like huge suspended disks, and thought only of just how many shiny metal surfaces (read: knives and needles) were in the room. The doctors and nurses were all wearing masks, probably speaking to each other, and there was no way for me to hear or lipread them - I remember telling myself to remain calm, even as my subconscious screamed that I might as well have been transported to an alien planet -

Finally, the guy nearest me pulled out a pad of paper and wrote, "What's your major at Stanford?" I answered that it was English. He took a second and wrote, "Literature or composition?" We chatted a little bit, like that, and I felt a huge surge of gratitude for his perception and thoughtfulness. It was possibly the most human moment of my entire day. Then someone pulled out an anesthesiologist's mask, I breathed three breaths, and that was it.

I woke up feeling the typical post-anesthesia dreaminess, like I had been away for a hundred years and had only just been transported back into my old life. Only, of course, this wasn't any semblance of life that I recognized. If I felt any kind of emotion, it was annoyance. More specifically, annoyance that the blood-pressure monitor on my arm kept going off. If there's one thing that makes me shudder, it's a blood pressure cuff. The tightening and releasing pressure was my primary link with reality for almost an hour, until I asked the nurse to please make it stop. (Of course, she didn't.)

After a while, they had me roll over on my back from my right side. At one point a nurse came in to take a X-ray of my skull, to verify that the implant was in the right place. Apparently, it was. Overall, besides some nasty business with nausea during the later stages of recovery, the entire thing went excellently. The nurses had me change back into my clothes and wheeled me out of the hospital around 7:00pm. My parents and I returned to our hotel room, where I staggered into bed and made them promise not to poke or otherwise bother me. Then I was out.

One other thing I should mention: according to my dad, when my surgeon came out to the waiting room he was smiling broadly. While I was still under, likely still in the OR, he had fired the implant itself to see if the nerve connection was functional. And my nerve fired in response. It fired! So, looks like whenever I turn this darned thing on, it'll be working.

(The AFTER: my lovely Princess Leia cap and bandage.)

As I've already written about, I felt remarkably good the day after surgery, but unfortunately by the second day my energy level had dropped. The ringing in my left ear, which started on Friday afternoon, was unbearable by Saturday morning. I wasn't in pain, but felt too weak and dizzy to really stand up. I spent 80 percent of the time sleeping. Whatever I did, while waking, was consumed by that aggravating, bewildered, cerebrally-confused silence. My parents and I decided to travel home from California that day, regardless - though my head wasn't too pleased at the jolts and bumps of the truck ride, I was pleased that it learned to deal.

(So happy not to have a bandage on my right ear - and to wear my hearing aid besides!)

It still does feel strange to hear out of only one ear, and admittedly I've caught myself fiddling with my left side, as if expecting my left hearing aid to be there, turned off or otherwise asleep on the job. It's as if I'm searching for a ghost limb. Since the programming on my hearing aids doesn't give exactly equal sound and frequency input to each ear, I've been feeling off-balance at hearing only half of what I normally do. It's easy to feel detached from the events around me, too, or to inadvertently not pay attention to what's happening on my left side. Especially since the muscles in my neck are still sore and I can only look right.

(When the bandage finally comes off: a tefla pad covers the stitches on my skull.)

After three days, yesterday afternoon I could not wait for the bandage to come off. Besides the fact that it was getting uncomfortable, itchy, and my hair was starting to smell, I couldn't wait to see what my head actually looked like underneath it. We'd taken a few glimpses, of course, while readjusting the bandage and plastic cap, but the skin was still too tender to touch. What I found was slightly strange.

First of all, my left ear is still numb. There are no medications inducing this; it's just that the nerve sensation near the tip of the pinna is almost completely gone. My dad thinks that might be an unavoidable consequence of surgery, cutting a few sensory nerves on the way to drilling to the cochlea. Maybe I'll get the feeling back on that ear, but maybe I won't. When I touch it, it feels like a plastic ear. My fingers feel it, as normally as ever, but to the rest of my head it's as if the ear itself - my ear - is not there.

Second, the incision the surgeon made for my CI is so small. It's just a line of stitches behind my ear, and they barely had to shave off any hair. Remarkable. It should heal quickly, and the stitches should dissolve and come out within 10 days of the surgery. I marvel at the skill of the surgeon, to do so much work within a space of less than an inch and a half.

Third, and perhaps most creepily, is that I can feel the CI internal processor and magnet on the side of my skull. It's just a small lump, under my hair, and smooth - still a bit tender, but doesn't hurt. I can't stop my fingers from running over it. This, in a few weeks, this will be the interface between what happens in the outside world and what I experience inside my body. There's no incision on top: the surgeon must have slipped it into the single cut he made, then worked it up between my skin and the surface of my skull. It's all so elegant, so deftly done, that I almost can't stand it.

But this is a new definition of reality, and many marvels yet remain. Onward and upward!

The Start of Bionic

Well, I survived!

Anyone who knows me knows that surgery (and hospitals, and doctors, and needles, and blood, and... etc.) is not high up on my list of favorite things. So I'm pleased to report that I am not only bionic now with the CI, but bionic and not feeling too unlike myself! Besides some nausea and general unpleasantness coming out of the anesthesia, the whole thing went smoothly. Three cheers, the scary part is over!

Granted, there are still some hurdles. I have a swaddle of gauze and a protective plastic cap over my left ear, which someone said makes me look like half of Princess Leia. It's to reduce swelling, and will stay on for three days. So far that swelling has been very, very minimal - the doctor said I might get a black eye, but so far I haven't. No other complications like they warned me about, either - no nerve damage, no alteration in taste or facial motility (I know, weird). The color has also returned to my face, and when I gaze in the mirror I look almost like my normal self. The good news is that my nausea is already gone and my appetite is back. It does hurt to chew, seeing as the muscles of the jaw are suspended along the side of the skull, so I'm on soft fare for the time being. Lots of ice cream! No complaints there!

By far the most annoying part is not being able to wash my hair for three days - lovely. Sleeping is awkward, since I can only lie on my back or my right side, and whenever I roll over or move I have to do it gingerly. I also have to be careful when I get up, since my balance and inner-ear equilibrium are out of whack. But I feel so, so much better than I thought I would. The skull itself doesn't have very many nerve endings, so the pain and swelling is minimal, especially with the pain meds I'm on. I'd say that, compared to this, the pain from getting wisdom teeth removed was far worse.

The CI is in there. And I know it. More specifically, I'm aware that something has changed in the structure of my inner ear. It's strange. When I burp or sneeze, the pressure inside is unbearable, and I can also feel a faint throb on the side of my skull where the device is (I imagine) sitting and biding its time. This afternoon I've also had some unpleasant ringing in my left ear, which I've read is normal, but still disconcerting. It's actually not like ringing at all - in that it's not a sound, exactly. It's more like a physical consciousness of the absence of sound, like my brain is desperately searching for auditory input but not finding it. As I sit here typing, I feel my skull pulse and echo with the silence. It consumes me. It's like a whirling kaleidoscope, or like falling into a black hole, a gaping emptiness that has a physical presence more concrete than sound itself. I've been wearing my right hearing aid, my left one lying useless on the dresser, and that probably makes the contrast worse. But I can't sit here with this silence: I have to hear something. I can only hope that this strange, dizzying emptiness will fade - but perhaps it won't, until I fill its gap with sound.

And, speaking of sound, I can't wait. The CI is in, the deed is done. Now I have no reservations - how could I? There's no going back, so I'm diving into this journey as far as it'll take me. Turn-on? Bring it on. Just over two weeks of post-surgical recovery before I actually hear.

Tonight I'm spending one more night in the hotel before heading home to Albuquerque with my family, given that I continue to feel this good. A more detailed recap to follow, once I'm back in my own room and my own bed with the swaddling gauze off my head!

Ode to a Hearing Aid

Today is my last day with a hearing aid in my left ear. Ever.

I don't know why that makes me sad. Perhaps it's because, for me, hearing aids symbolize my perception of my own identity. Even though their feeble magnification will likely quail before the power of the implant, I'm just not me without them. Though I've never liked seeing them in pictures, and though I was once too young and insecure to flaunt them in public with my hair up, accepting them was part of developing my self-confidence. My coming of age, so to speak.

Plus, I know them inside and out. I have learned over the course of 20 years how to tweak, troubleshoot, and function with them deftly and without thought. I know when that odd sound comes from a low battery, or when it's because I have fluid in my earmold tubes, or when my own ears are stuffed up. I have dropped them more times than I can remember. Putting them in is an automatic motion. My ears get cold without them; I hate feeling the breeze blow through my ear canal. I walk around my room with them dangling from the curve of my finger. I turn them off and on, floating in and out of silence, with total ease.

Getting the CI is an exciting upgrade, but it's also a sudden change to a device I do not know. And, while my hearing aids are extraneous to my body, my CI will be inside me. I wonder after its power over my abilities and my future.

Perhaps, more simply, this is the end of an era.

So, even though today was a day full of activity, it was also a day of grieving. My left hearing aid has been squealing loudly since I put in this morning - it just needs a new earmold, but I like to think that it's protesting. Tomorrow, I put it in a box and shelve it forever.

Today was my pre-op appointment with the surgeon, which made the reality sink in like it never has before. Sitting here in a coffee shop, done with school and moved out of my room, I feel the calm before the storm. Even through that calm (which is surprising), my thoughts only spill out as a jumble.

- Nurses, even the ones supposedly trained to interact with deaf patients (after all, wasn't this one in a CI office?), really aren't up to speed. Really. This one looked down at her clipboard and mumbled the entire time. Argh.

- Taking so much biology in college has toughened me up! I didn't get queasy when the surgeon went through the necessary disclosure of risks - piercing facial nerves, et cetera. Didn't even shudder when they talked about IV needles. Wow, big step there.

- I do not like hospitals or doctors, but honestly - the Stanford hospital is gorgeous. Parts are more like a floral garden or art gallery than a hospital at all. It was a rather cheerful place to be, until I remembered why I was there or noticed the signs pointing to the cancer or cardiovascular ward, the patients dragging their IV stands around in blue cotton gowns.

- Following that, I have not been in a hospital for years. I should realize how fortunate I am.

- The anesthesiologist sat down and asked, "Can you hear me all right like this?" No, no, no. I'm reading your lips, don't you understand? If I could hear you all right, I wouldn't be here.

- Strangest moment of the day: when the doctors insisted that I get a pregnancy test, just to be sure. I know it's protocol, but anyone who knows me would laugh and ask, Um, really?

- It's been very tempting, in making this decision, to think, Okay, hearing world, I give in. You've won. But that's not the way it is. I can only imagine what I stand to gain. And it really isn't about hearing or deaf at all, in the end.

- A source of minor stress: my surgery was unexpectedly shifted from its 7:30am timeslot to 12:30pm, which I'm not altogether happy about. First of all, I'm not allowed to eat (or drink) after midnight tonight. Meaning that, by 10:30am when I enter the hospital, I could be decidedly grumpy, and there's nothing like anxiety on an empty stomach. And I'd rather get this over with. But, on the positive side, I don't have to be at the hospital at 5:30am!

- Finally, I have some of the most amazing friends in the world. Seriously. Send me your prayers, positive thoughts, and good vibes tomorrow. It's just beginning.

(Great?) Expectations

Exactly one week before my surgery. Seven days. How did it come up so fast? Technically I'm still in school, and should be spending all of my time studying for final exams, but this has been weighing too much on my mind.

Really, it's hard not to think about it. Every night I end up lying in the dark and pondering what I'm getting myself into. I think, I dream, I wonder. Admittedly, I fear.

With the CI always somewhere near my thoughts, my daily routine feels different. I keep getting the feeling that I'm just going through the motions before something fundamental changes. It's hard not to be impatient with the daily challenges of being deaf - it's been two decades, enough already! - but at the same time it's hard not to shrink back. I regard my impending surgery as a cave in which anything could dwell. Once I enter that cave, the cave (supposedly) of sound, what will I find there? Some magical unicorn to carry me off on its wings, or a mucky little Gollum, in which I will be disappointed? Will my surgery succeed or fail?

Even my hearing aids sound different with the thought that, soon, I may be hearing much more. I attended an event this past weekend where there was music, and sat concentrating on it as hard as I could, painfully aware of how little I could hear. To my mind, it was just flat, dead noise - nothing sublime or ecstatic or provocative or beautiful. If anything, I felt as if I were listening through a thick wool-lined coffin - though of course how would I know what that sounds like? I would rather have not heard it, would rather have felt only the beat instead, but at the same time I wondered whether, one year from now, the same situation could bring me joy.

Lipreading, too, feels strange. I am thinking too much. This week I've attended several social functions, it being the end of the school year, and have felt as frustrated as ever by the challenges of communicating and understanding in such large groups. But this frustration is buffered by hope. And detachment. And impatience. I find myself studying people's faces and wondering if, maybe, there will come a time when I can absorb pertinent information through my ears instead of through my eyes. People are idiosyncratic in the way their lips move, but I wonder what it means to recognize someone's voice rather than the motions of their face. Will I ever be soothed, rather than irritated, by the sound of another person speaking?

All of these musings bring me to the question of my own expectations. While I was deciding whether to get the implant or not, I asked myself what the benefit would have to be, for the whole cumbersome process to be worth it. The answer was surprisingly easy: if the implant helps me hear even a little bit more than I do now, I'll do it. When I met with my audiologist, this is what she thought might happen. Her prognosis was cautious, as I've found is normal: there are no guarantees, and I could make huge strides or small ones. But, regardless, I might as well face it. My hearing right now is so awful that what is there to lose?

This still doesn't translate into a fundamental list of what I'd like to get out of my CI.

Here is my list:

1. Have some clearer recognition of words based on sound alone
2. Rely less on lipreading (even if I do rely on it to some extent); consequently feel less tired at the end of the day
3. Experience fewer situations where a person exclaims, "Can you hear that?!" and I respond, "Nope."
4. Distinguish higher frequencies and pitches I've never heard before
5. Maybe, maybe be a little bit happier/more comfortable in a group

Here is the hearing-person list:

1. Talk on the telephone
2. Listen to music, understand the lyrics, and LOVE it
3. Turn off the captions
4. Don't use interpreters
5. Basically function normally

Many hearing people do not realize that a CI is not a miracle cure. I will never hear everything. I will never function entirely like them. Likewise, they often do not realize that the process of getting an implant is not as easy as putting in a DVD then pressing "play." At first, my brain will be overwhelmed. I will have to rely on neural plasticity, to form new synapses and connections, to train myself to interpret noise as something meaningful. This will take many months, if not longer. I keep being told how much hard work and commitment this will require. Hey, after 18 years of speech therapy, I'm not afraid of that!

In short, I think I'm realistic. But it would be amazing if what actually happens ends up being closer to the hearing person list than my list. And, besides the fear that the implant will fail, that is the question that has me on pinhooks. Just how much do I have to look forward to, anyway?

Finally - since prelingually deaf implantees are rare, how cool would it be if my experience were something like this?: