Sunday, June 27, 2010
Thursday, June 24, 2010
One of the things that hearing professionals do for parents whose children have been diagnosed with a hearing loss is play simulated clips of what their child's world sounds like. My own parents have told me about their experiences with such audio clips when I was young, and say that it helped them cope, understand, and move on. Earlier today, while reading another deaf-themed blog, I found this website that provides similar simulations:
Of course, this site is targeted toward helping hearing people (like my parents, years ago) understand what deafness and hearing loss sounds like, and so it would be useless for me to "listen" to say whether or not it's accurate. So, to my hearing friends and readers out there - is this surprising, eye-opening, appalling, just what you predicted? Any insights?
Wednesday, June 23, 2010
By this point, I'm recovered and my life has returned to normal - whatever that is. (The CI will shake this up soon enough; it's in there biding its time. I am so impatient, so excited for the turn-on. Every day overwhelms me with a feeling of waiting.)
Now that my post-op days are behind me, the major challenge (besides patience) has been returning to the hearing world. I started my summer internship this week, in an office where my bosses and coworkers assume that I will be proficient at communicating. It's been hard, navigating the corporate world with only one ear, and not even a good one at that. I find myself praying that, in less than a week, the CI will leap to my aid. If it doesn't make me crazy first. Were it not for lipreading, I don't know what I would do. Though this is an imperfect solution at best. Although my hearing friends often express incredulity over how well I lipread, and how easy I make it look, I don't think very many of them realize just how hard it can be.
If the weeks before the CI were The Weeks of Anxiety, and if last week was The Week of Recovery, then this week is The Week of Waiting - and Lipreading. In its honor, I've decided to post a short exercise I wrote for a creative nonfiction class this past year, which later informed a longer essay on the subject. I'll call it, simply, "Lipreading."
The mechanism by which neurons fire electrical signals, and also the way information gets from photoreceptors in the eye to the visual cortex in the brain’s occipital lobe. Action potentials are firing all the time, all across my body, but I think they must fire at unusual frequency coming from my eyes. Maximum speed of an action potential, I’ve read, is about 120 meters per second. I don’t think this is fast enough.
I’ve always wondered what it would be like to read Braille. Instead of taking in virtually all of my communicative information through my eyes, how would it feel to absorb it through touch? I don’t think enough people realize the scope of alternative modes of communication.
And a side note: over the course of my life, several people have asked me, “Oh, you’re deaf? Do you read Braille?”
Cocktail party effect
The cocktail party effect, which was first described by Colin Cherry in 1953, is what allows hearing people to talk in noisy places. It is the ability to focus one’s auditory attention on a single speaker or noise from an excessive amount of background and environmental sounds. Since assistive hearing devices, such as hearing aids and cochlear implants, only magnify environmental sounds – all of them – people with hearing losses do not have this selective listening skill. I really wish this were not true.
I hate driving with a passenger. Here’s why: because I can’t simultaneously watch the road and watch that person talk. Also, when I am the passenger, I prefer to sit in the front seat so I can see everyone in the car.
Also known as over-enunciation. What I like to call it when people, once I ask them to please slow down so that I can understand them, immediately say, “Oookaayy, eeeezz thiiiss ah-nyy beeh-tehrrr?” No. Just talk normally.
People from other countries, or even other parts of the United States, don’t just sound different – they move their mouths differently. Sound is mechanically conduced, after all. My brain does a headstand whenever I meet someone from, say, Singapore.
Really the basis of all lipreading. Catch what you can – oh, they’re talking about pizza – and fill in the blanks like a puzzle. Sometimes you’re right, sometimes you’re not.
Hearing people protest that they don’t know how to lipread. They ask how I learned, as if it’s a skill I’ve honed for the talent show. Because I have to, I want to say. You could do it, too, if it were your only choice.
I don’t know
My cop-out response when I have to ask someone to repeat a question more than three times.
I’m terrible at getting jokes. Not because I’m slow, but because the joke-teller often starts to laugh, talk fast, or change his/her voice for dramatic effect, and I miss the punch line.
Sitting down with family members is like settling into a familiar couch. Other people might recognize their parents by voice; I recognize them by how their faces move. I know those faces, I know the shapes their lips make. We talk. I smile and let the words flow over me.
Good lighting is essential. Glaring indoor fluorescents – bright enough, but eventually hurt my eyes. Romantic dinner restaurants with low light but high ambiance – the food may be good, but the conversation isn’t always. Spotlights or lamps – helpful, but often shroud the far side of a person’s face in shadow. Sitting and watching a friend talk when the sun is at her back and in my eyes – can we switch places, please? Soft or muted outdoor light – perfect.
The McGurk effect, which was first described in a paper by Harry McGurk and John MacDonald in 1976, demonstrates that normal speech perception is multimodal and far more complex than sight or sound alone. In McGurk and MacDonald’s classic experiment, participants watched a video of human lips repeatedly pronouncing the sound “g” (the phoneme /ga/) at the same time they heard the sound “b” (the phoneme /ba/). Surprisingly, they reported not hearing either /ga/ or /ba/, but the intermediate sound “d” (the phoneme /da/). I consider this evidence that hearing people do lipread, even if they do not realize it.
When I’m at the doctor’s office, the nurse escorts me back to the examination room, then bends over her paperwork and tries to ask me questions and fill it out at the same time. And what’s more, she'll sometimes wear a paper mask that covers her mouth. “I’m sorry,” I say, “could you take that off and look at me?”
Lipreading is easy enough when you have a closed set, or predetermined category, that you know the conversation will be about. Oh, we’re talking about food. Got it. But when the doors of the set suddenly fly open, when the box is gone and the vast sky glares before your eyes, full of possibilities, you start to feel overwhelmed. You start to second-guess yourself, for really the other person could be talking about anything. The nature of particulate matter, the child that keeps wetting the bed, the country singer who was just on the radio. It’s an open set. And those possibilities provide the most frightening challenge of all.
It’s easy to imagine that I just see the words like someone would read them on a page. But I don’t. My brain needs to piece the array of minute facial motions together, to guess what that word or sentence could have been, and where the person is going next. When I’ve been lipreading for a while, the batteries on my internal processor start to wear down. I lose my edge. And then it’s just a blur.
Breathe, for my sake and yours. A side note: almost all people I’ve met from Texas talk fast.
I love reading, as in reading books, because the words are clear and crisply printed on the page. I can spell them out, read them backwards, read them again and again. There are never any doubts regarding what they say.
It is almost impossible to lipread a person sideways, when he or she is looking at someone else. Other impossibles: lipreading in the dark or dim light, lipreading while people are laughing, lipreading people who mumble or put their hands in front of their mouth, lipreading people with facial hair, lipreading when my eyes are tired.
A frequently quoted statistic, of which I do not know the original source, says that even the most skilled lipreaders, across a range of people and situations, only understand thirty percent of what is being said. From my experience, I believe this to be accurate.
A friend from my freshman dorm once told me I ought to be a spy. “Why?” I asked him. He said, “Because you could look through binoculars and lipread and understand everything anyone is saying!”
Voiced versus voiceless
Truly the bane of every lipreader’s existence. So many pairs of consonants are formed in the same place in the mouth, with the same movements – except that one is voiced and one is not. Hence, they look exactly the same. Think “b” and “p,” “t” and “d.” This is where guesswork becomes my closest friend.
When two becomes three, and three becomes four
Having a conversation one-on-one? Just fine. A second person comes in, making us three – a bit harder, more like watching a ball volley across a net, but still manageable. A third person arrives, and a fourth, or even a fifth? Too much. In this case, the speed of sound does exceed the speed of light.
The X factor in understanding people is that their minds are unpredictable. They’re likely to go from a closed set to an open one, likely to make digressions or change the subject, likely to name places or things I’ve never heard of before (and thus cannot fill in the blanks for). The most unprecedented cognitive leaps are what make conversation interesting, but they are what also make it difficult. If I could follow people like I can trace a line on a sheet of paper, perhaps I could form a coherent image for myself.
Young children don’t talk like real people. Hence, I can’t understand them like real people. I just smile, initiate a game of tag or tickle, or tell them to go play with someone else.
At the end of the day, if only I could zip people’s mouths shut.
Saturday, June 19, 2010
Sound and Fury explores the story of two brothers, one deaf and one hearing, and their families as they expore their decisions and feelings about cochlear implants. Chris Artinian is hearing, and he and his wife Mari (also hearing, but has deaf parents) have just found out that their young son is deaf. Peter Artinian, Chris's brother, is profoundly deaf, and he and his deaf wife Nita live very much in the Deaf world with their three deaf children. When Peter's 4-year-old daughter Heather begins asking for a cochlear implant, and when Chris and Mari decide to implant their deaf son, chaos breaks out in the extended family. Essentially, the hearing families in the film feel, implanting a deaf child is a necessity for giving the child viable opportunities to succeed in the hearing world. Withholding the gift of the implant, and therefore the gift of sound, verges on "abuse." On the other hand, the Deaf families believe that cochlear implants threaten Deaf culture, sign language, and Deaf identity. They feel that the choice to be implanted, and thus to reject one's deafness, should belong to the child and the child alone. Furthermore, the Deaf families feel, implants are another means of condescension by the hearing world, which treats the Deaf community as inferior. Cochlear implants, in this film, are not simply a "quick fix" or "medical miracle." On the contrary, the decision to get an implant boils down to the question of identity.
This film is well-known and extraordinarily well-done, and I've wanted to see it for a while. I'm glad I didn't see it before I was implanted, though. Before taking that first irreversible step, I did not need any more doubt or controversy thrown into my decision. Plus the video clips of the CI surgery were not something I needed to see before I went under!
Really, the entire documentary was heart-wrenching - even more so because it made me reflect on myself and the path I, and my parents, have chosen. The controversy and sentiments surrounding CIs were not news to me. Rather, witnessing them in this format refocused my perspective. I saw my own struggles reflected in the film's deaf people. When the little girl, Hannah, tried to interact with hearing (or implanted) children who did not sign, I felt her frustration and bewilderment. It came to me in the form of a memory - which, of course, it is. When the deaf father, Peter, told about keeping to himself as a boy because his hearing peers could not reach into his world, I saw myself there too. I recalled an excellent quote from Helen Keller, which a friend reminded me of just yesterday: "Blindness cuts us off from things, but deafness cuts us off from people."
But what I did not feel, watching this film, was the full extent of the Deaf adults' bitterness. I have somehow escaped that. Because I have many wonderful hearing friends, it hurt to see these Deaf people so sequestered from everyone who did not sign. It hurt even more to realize that this was not their own fault, that they'd never had the opportunities that I have. Despite their protests to the contrary, they were isolated - just as, to a lesser extent, I have been. Does their frustration justify their hostility to everything "hearing"? I do not know. I only know that this film stirred the old identity crisis within me. Within the first ten minutes, in which the anger of the Deaf parents toward CIs had become apparent, I sank my chin into my hands and said, "Now they're going to make me feel like a traitor."
And, in their eyes, I am. It's been a long time since I interacted with Deaf people. I understand sign language very well, but my own sign is no longer good, because I don't use it. I found myself relating more to the hearing families in the film. Strangely enough, though, this was fine with me. Perhaps I have chosen to occupy that odd "cochlear-implant world" in between the hearing and the deaf worlds, but this is an extension of how my life has always been.
In this film, I also saw my own parents, faced with the enormous challenges of deciding how to raise a deaf child. What decision would I make in their place? It's complicated. I do believe that the decision to get an implant should be a child's personal choice, rather than a parent's decision. In this way, I do not regret my upbringing in the least - even if a CI would have saved me some of my struggles, it would have been my hearing parents' projection of their desires onto my identity. I had to discover and decide that identity for myself. Thus, my decision to get a CI, even after a lapse of 20 years, has been self-empowering rather than imposed. However, I don't know that I could ever make my own kids go through what I did. I don't know that I could deny them the opportunity to function more normally, especially when the CI is most beneficial within that narrow language-learning window.
I do think there is a middleground, however, that no one in this film saw. It doesn't have to be either-or. Sign language or speech. The doctors, schools, and hearing families who advocate the CI at a young age also urge parents never to sign to their deaf children. They argue that sign language functions as a "crutch," so that the child will never learn spoken language. What these professionals do not realize is that children are such astonishingly adept learners that they can learn more than one language at a time. And denying children the access to any form of communication that they can understand, whether verbal or visual, is abuse. When I was young, one doctor told my parents to do exactly this, to implant me and not sign - words cannot articulate my gratitude that they had the sense not to listen. One of the implanted deaf girls in this documentary, even at five years old, had never heard of sign language. She was perplexed when she saw it. She did not seem to realize that she was deaf. I found something sad, something intolerable about that. Her hearing parents had decided, from her birth, that she must be hearing, like them. And, as a result, a huge shard of her identity was forced to vanish. I am no Deaf rabble-rouser, and there is also tragedy in the deaf child who cannot connect with her world, but still - how awful.
To the readers of this blog: just watch this film. And, after watching, what would you do?
Thursday, June 17, 2010
I've been spending my days at home, indoors for the most part, reading and writing for hours at a time. I'm not allowed to be physically active or to lift more than 20 pounds for another week or two, just to allow the surgical site to heal. It's hard to restrain myself when I've been feeling so good, but the fact remains that my body still isn't completely back to normal. I can now turn my neck almost its full range without soreness, but the muscles on my left jaw are still stiff, and there's a constant tenderness beside my left ear. I can get up without dizziness, but something in the back of my mind cautions me that it's best not to walk too fast. If I'm on my feet for too long, even just unpacking or doing dishes, my head starts to throb. A strange edema has persisted on the left side of my head, a pouch of fluid above and behind my ear. When I press on it with my fingers, it literally gurgles and shifts to a different place beneath the skin on my skull. The first time I discovered this physical sensation, I was horrified. It was like sloshing water, or gel, around in a closed bag. Compulsive icing has helped the swelling a bit, though.
My left ear is still numb, a veritable slab of meat. I can pinch it without pain, just as I remember gleefully biting my inert tongue after local-anesthetic procedures at the dentist when I was a child. Strangely enough, my tongue has been affected as well: the left side has gone numb. The doctors told me this might happen right after surgery, but it's only emerged in the last few days. As a result, I can only taste on the right side of my mouth, something which has made meals decidedly less savory. It's as if someone rubbed off all of my left taste buds with sandpaper, leaving only a smooth, dead surface. I'm wondering if the swelling beside my ear could be constricting the nerve signals that pass to the rest of my head. And, if not, hopefully those sensations will come back with time.
Minor annoyances like these are all I have left to deal with: swelling, loss of sensation, headaches and fatigue. Pretty remarkable when you consider where I was a week ago. I'm not sure how much of my headaches are from the fact that I can't hear from my left ear. The ringing and tinnitus have all but stopped at this point, thankfully, but my right ear continues to bear the full burden of the sounds I do hear. My brain is not used to this, and sometimes listening to and interpreting noises can seem overwhelming, like a gigantic beast is standing over me gnashing its teeth. Come on, leftie, help me out a little! But it doesn't. It won't for another week and a half, and then it'll have its own problems to deal with. Sometimes I get so short-circuited that I have to go off by myself and sit in silence for a little while. I don't mind this.
One thing people have been asking me is how much the CI will help my hearing, when I do turn it on. What percentage am I expected to recover? What will I be able to hear? The answer, quite honestly, is that there is no answer. I'd feel better, too, if I could pin down an exact number, like 75 percent - it's true that there's something reassuring about numbers. But, in truth, the only thing I know is that it will likely be better than what I had before the surgery. That term, "better," is a slippery word. A trickle better, or better in life-altering proportions? A lot of it depends on me: my biology, my body, my perseverance, my desire. It will not come all at once. The reassuring news is that most of the people I've talked to and read about with CIs say that the quality of their lives improves after the implant.
Again, I guess that's what this blog is for, to track exactly what changes for me and how. Maybe several years down the road, with objective testing, I'll be able to calculate some bogus figure that states how much I've improved. But it will be applicable only to me and my journey, not to the workings of the implant itself. In any case, I'll be able to look back at what I've written and know - hopefully - that the decision I made was the right one.
Monday, June 14, 2010
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.
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.
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!
Friday, June 11, 2010
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!
Wednesday, June 9, 2010
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.
Monday, June 7, 2010
1. Do I even want a CI? check.
2. Am I a good candidate? check. (more about this later)
3. Which type of device should I get? check.
4. Which ear do I implant? ummm...
The last question was the most ambiguous to answer. Most CI recipients are implanted in one ear at a time - and, out of those people, only a few go bilateral. The reasons for this are varied, but mostly because research has shown that the second implant usually provides only a marginal benefit compared with the first. Indeed, I have a few friends and relatives who are deaf in one ear but have normal hearing in the other - and they function like regular hearing people for virtually all purposes. The only major benefit of having two ears, rather than one, is better three-dimensional localization of sound. (Biology nerd moment: the brain compares the sound input - loudness, temporal sequence in reception of sound waves - from each ear, then integrates them into a mental "mapping" of where the sound is coming from. We don't even notice this intricate process - it seems to come to us automatically, as we turn to look at an unexpected noise. But, without the input of two ears to compare, it's much harder to perform such calculations.)
I never seriously considered going bilateral from the beginning, to be honest. First of all, there's the impracticality of bilateral CIs for surgery and recovery. When I talked with a friend (who had recently been implanted) about the idea of bilateral implantations, he explained that surgeons are averse to it. They're reluctant to operate on one side of a patient's head, then flip that patient over on the surgical table, on top of a fresh wound, in order to operate on the other side. Just thinking about that made me shudder and agree wholeheartedly. I'm already going to face difficulties with sleeping immediately post-surgery, when I can only lie down on one side - imagine if I couldn't put pressure on either side of my head!
My second reason for not going bilateral has to do with my lingering reservations about the CI. As ridiculous as this might sound at this point, I view my upcoming CI as an experiment. If I do not like it, if it does not work out the way I hope it will, at least by going unilateral I'll still have one ear left. Seeing that my major objection to CIs has always been that I do not want to destroy my cochlea, why would I destroy both of them at the same time? Then, in the case of catastrophe, I would truly be stuck in a world of silence. If I do like the one CI that I get, I can always get another later.
Okay, I did not want to go bilateral: check. Now the decision came down to a game of eenie-meanie-miney-moe. Which ear to implant? Which one would allow me to hear the most?
At first, I honestly considered flipping a coin. Both ears are so bad that did it really matter which one I implanted? Look:
This is an audiogram that I got a few years ago. The thick line near the top, at 20 dB, is considered "normal" hearing. My threshold is far, far below that - 90 dB at the most, and that only for lower frequencies. Once you go along the chart to higher frequencies, I almost do not hear at all. (Just for comparision, the threshold of pain for hearing people - the point at which sound becomes unbearable and causes permanent damage to the auditory nerve - is 115 to 120 dB. At this point, without hearing aids, I am only just starting to hear. Another fact: decibels are logarithmic units, so what I hear is thousands of times below what hearing people hear.)
This absymal performance is, in the end, what prompted the doctors, audiologists, and other CI evaluation specialists to unanimously agree that I'm an excellent candidate for an implant. Of course, I'd be a better candidate if I were younger, but that's neither here nor there. Their decision did not come as a surprise - after all, was there ever any doubt in my, or anyone else's mind, that I really am deaf? Ha.
Again, with this audiogram in mind, does it matter which ear I implant? In the end, probably not really. It is true that my right ear has always been slightly better than my left (though you can't see much difference on the above graph). In listening and auditory training exercises, this is always the ear I prefer to listen with, and during audiograms it is the ear that always makes me most confident that I am actually hearing tones and sounds - rather than imagining them. In a random sentence comprehension task for my pre-CI evaluation, I scored 15% out of the right ear (most of that by guessing). My score for my left ear was only 7%.Which is the better strategy, implanting the better or the worse ear? Several people gave me different advice. Some said to implant the worse ear - that way my margin of improvement will be greater. Others said to implant the better ear, because that's the ear I feel most comfortable with anyway. Still others had more unexpected opinions. Among them was implanting the right ear because it's on the side that passengers will be talking into while I'm driving a car. A valid point, and one I would not have thought of otherwise. (But what if I move to the UK?)
In the end, my decision was more or less a crapshoot. I decided to go with the left ear, in hopes of bringing that ear up to par. The right side can always join the party later down the road, if I so choose.
A last word: this will probably sound maudlin, but I'm sad to leave my right ear behind. I'm right-handed, right-eyed, right-legged (at least from skipping around the yard) - why not right-eared? In truth, this will be the first time that I have any dominant faculty on the left side of my body. I find that weird.
Friday, June 4, 2010
Last month, Stefan Heller and other researchers at the Stanford Medical School published a huge breakthrough in inner-ear stem cell research. Over the last few weeks the news has been all over: I've heard about it through the New York Times, through deaf networks, and through classes here on campus. The biology nerd in me finds it beyond cool, and I thought I'd post it here:
Though it may never directly affect me, Heller's research is unbelievably relevant to the process I am going through. When I was considering my implant, one of the questions I asked was about the status of recent stem cell research, and whether it would ever be a feasible alternative to a CI. This has always been one of my reservations about CIs: should I go ahead with a surgery that will likely destroy most, if not all, of the residual hearing in my cochlea, when there might be huge technological advances a few years down the road? Is it better to hold out?
My doctors' answer was no. If researchers like Heller ever make significant strides with stem cell therapy for deafness, clinical trials are at least ten years away. No sense in waiting for that, if a CI can help me here and now.
Of course, this stem cell research is not without its controversy. It brings up the Deaf objection that deafness is not a disease that needs to be "cured." To put it lightly, Deaf people find it offensive whenever hearing people dare tackle projects like this. As for what I think about that? Let's just say that it's suddenly become very complicated.
Thursday, June 3, 2010
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?: