Last week I went back to the ENT to remove the wick from my ear and confirm that the infection had cleared up. I got the all-clear to resume wearing my hearing aid and then had another appointment later in the week with my ENT’s colleague. He recommended a Baha (bone-anchored hearing aid) for my right ear, the ear that is nearly deaf for all practical purposes. Put simply, my hearing loss is due to middle ear trauma but my inner ear is perfectly normal. While my left ear can still benefit from a conventional, air-conduction hearing aid, the hearing loss in my right ear is much more severe: a regular hearing aid has to have so much power going through it to help at all that it quickly develops feedback. The Baha is surgically implanted into the skull behind and above the ear and uses bone-conduction to transmit sound directly to the undamaged inner ear, bypassing the useless middle ear, and creating a greater overall amplification with less power (which means less feedback). Bonus: since there’s nothing actually in my ear, there’s nothing to aggravate the ear toward infection, to which I’m highly prone.
Before agreeing to have a hole drilled in your skull and a metal screw permanently implanted into it there’s a headband you can try on that mimics the experience of the real thing, though not as effectively since the headband has to go through hair, skin, and tissue before getting to the actual bone. Still, the headband was pretty damn impressive. I haven’t voluntarily had a conversation with someone sitting on my right side since I was five years old. I am constantly positioning myself to have people be on my left. My best friend of 15 years calls it the, “which-side-of-you-do-I-need-to-be-on tango.” But when the doctor put this thing on my head he sat on my right side, had me take out my left hearing aid and face away from him (so I couldn’t read his lips), and then had an entire conversation with me and I didn’t miss a word. I didn’t even have to concentrate or struggle to hear what he was saying. He told me he was speaking barely above a whisper, but it sounded like he was talking into a microphone. He could have been speaking into a sound system plugged directly into my head.
The instant he started speaking and I heard his voice in my right ear I burst into tears. I don’t remember the last time I heard someone’s voice in that ear. He told me the nurses call it his “crying machine” because everyone has the same reaction. That very day I filled out the paperwork to have the surgical coordinator call me to schedule the surgery. It’s set for May 17th.
When I got back to my car that day I sobbed. Every time I started to get a hold of myself I thought about calling my dad and I started sobbing all over again. Someone had just told me, “Hey, I can make it so you can hear almost like normal for the first time in over 20 years. I can make it so that this thing you’ve been coping with for nearly your entire life doesn’t matter so much, so that this thing that has been a fundamental part of shaping your identity doesn’t have to be a driving force in your life. I can make it so that all these little things you do throughout your day – like positioning yourself in the right place, and reading people’s lips, and looking around frantically when you hear a strange noise in the house or an ambulance when you’re driving, trying desperately to locate the source of the sound – virtually disappear. I can make it so that you can hear your children laughing or fighting or getting into the cookie jar from a different room. I can make you hear as well as or better in your deaf ear than you hear in your good ear. Would you be interested in that?” And I didn’t know what to say about it, I didn’t know how to describe it or how to talk about it.
I didn’t know how to tell my parents, “Hey, remember all those surgeries I had when I was a little girl? Remember all those doctor’s appointments, all the time in the hospital, all the physical pain and the even deeper emotional pain, all the hopes, all the disappointments, all my tears, all my frustration, the ultimate failure of the doctor to restore my hearing? It’s OK, Mom. It’s gonna be OK, Dad. Sure it’s still artificial, but with this thing I’ll be practically normal. Just 18 years after we gave up.”
But while this is all quite astonishing and the possibilities extraordinary, I find myself feeling very hesitant. All of this has suddenly brought to the fore a lot of emotions and memories that I’ve never fully dealt with, and wasn’t prepared to be confronted with at this juncture.
I started losing my hearing when I was, I think, around 4 or 5. I’d had recurrent ear infections for years and my ultimate diagnosis – bilateral cholesteatomas – was missed for years. Cholesteatomas are essentially cysts that accumulate dead skin cells and other debris in the ear, growing and eroding the bones of the middle ear (essential for hearing), destroying the connection of the ear drum to the ear, even wrapping around the facial nerve or progressing up into the skull if left untreated for long enough. Surgical removal is the only treatment, and if given long enough to erode the bones of the middle ear hearing loss is inevitable. My right ear essentially no longer has a middle ear at all: the ear drum is gone, as are the bones. My left ear fared better: the bones are intact and the ear drum is still present, though there’s a large perforation, which can’t be surgically repaired (because my Eustachian tubes don’t function properly, which means if we patched the hole my ear would just create the hole again because it needs a way to balance the air pressure in there, which isn’t being done by my faulty Eustachian tubes; and yes, we’ve tried to repair the tubes multiple times to no avail).
As a result of all this, I had numerous surgeries as a child to remove the cholesteatomas, attempt to reconstruct the bones, attempt to fix the Eustachian tubes, remove my adenoids to (I think) try to help prevent future ear infections, attempt to patch my perforated ear drum, attempt to (in my hazy understanding) reshape my mastoid to keep it from being so prone to infections, and perhaps a couple of others that I’m not recalling. All told I believe I had upwards of 10 surgeries, and you now know as much about them as I do. As I was thinking about this upcoming surgery – though really not an “ear” surgery at all, as minimally invasive as drilling into one’s skull can be, and completely removed from all the others I’ve had – I came face to face with something that I’ve known a long time: I really have no idea what was done to me, or why, or what worked and what didn’t.
And I am fucking pissed about it.
I’m not even pissed at anyone in particular. I’m just pissed off about the whole nasty business in general, just on basic principle, I suppose. Most of the surgeries happened between my 8th and 10th birthdays, which means I was old enough to have developed long-term memory and I have plenty of memories about it all, but I wasn’t yet old enough to really understand what was going on or to have reliable memories. I don’t know what’s true and what I’ve made up. I don’t know what really happened and what’s just the scared impression of a 9-year-old girl with 20 years of baggage piled on it. It seems the surgeries were coming every couple of months for awhile, and I distinctly remember (or do I?) one summer, the August of 1991, I believe, excitedly (because I thought it would restore my hearing) writing “Surgery” on my calendar and then writing it again just three weeks later. My 9th birthday fell in between. This entire chapter of my life – and it is a long, sad chapter – is shrouded in mystery even to me. I can’t trust my own memories of it, which means I can’t own it, and if I can’t own it I don’t know how to end it. And believe you me, after 20 years of this bullshit I am ready for this chapter to be fucking over.
I already knew that all these surgeries at such an impressionable age had the result of giving me a fairly intense fear of hospitals, particularly anything having to do with surgery: anesthesia, being asked to count backwards from 100, the little thing they clip on your finger to monitor your pulse, doctors in masks and hair nets, oxygen masks, and let’s not even talk about the “recovery room,” where a scared, groggy little girl wakes up completely alone, far removed from her parents, barely able to talk or move or do anything but whimper, and, once, with an oxygen mask on her face, leading her to believe something had gone horribly wrong and she was on the verge of death, because the only time people ever wore oxygen masks on TV was when they were dying. I also despise IVs, though they don’t scare me (but the cold and horribly unnatural feeling of solution running through them into my body does).
I especially hate anesthesia, the way you can feel your brain slipping away from you, the unnatural sound of people’s voices as they hover around you just waiting for you to lose consciousness, the powerlessness of it all, the sensation of waking up and being immediately confronted with that post-op smell, that absolute stillness like you’ve been abandoned or, worse, that horrifying bustle like something’s gone wrong and everyone is rushing to fix their mistakes before you’ve noticed. I hate having to place so much trust in someone who never even seems to notice that this is my brain, my personhood, my consciousness that they’re expecting me to thoughtlessly hand over to them without so much as a by your leave. Totally apart from surgery, I’ve spent so much time in ENT offices that I can’t even have my ears cleaned without tearing up, not from pain but because it’s as if the process immediately strips me of power over my own life and turns me into an 8-year-old girl again.
I decided that if I was going to really be comfortable going under the knife again I’d have to come to terms with all my previous surgeries. I’d have to understand what they were, why they were done, what worked and what didn’t. I needed to make them mine and shift the balance of power from the hands of some doctor treating a little girl to my hands, the hands of an intelligent, well educated, successful woman. So I called the doctor’s office in Ohio and requested my records.
They don’t keep records for longer than seven years.
I still can’t believe that it’s even legal to just wipe out a person’s entire medical history (and after only seven years, which seems like a ridiculously short amount of time) and I frankly don’t have the energy to go into the rage this inspired in me. I felt as if a part of my own body had been stolen and violated. There are literally pieces of my body that are gone, however small, and those records were the closest I was ever going to get to making my body whole again. Those records were the only link I had to understanding what’s gone on inside my own body, and they’ve been permanently destroyed. I can still get the surgical records from the hospital (whose staff has apparently heard of, you know, off-site archiving) but those will only have information about anything done in the actual hospital. None of my audiograms and none of my post-op follow-up will be in there. None of the “why” in all the decisions that were made will be a part of the record, and it’s the “why” that I really need.
My disappointment and frustration at not being able to receive my records spiraled into despair and despondency that the Baha, which by now family and friends are expecting to be my “miracle,” would be worth it at all. I’m afraid that things won’t sound natural, that it will amplify background noise too much while not amplifying speech enough, that it will cause too much feedback, that I’ll hate and resent having another piece of my body – however seemingly small and insignificant – permanently removed and altered because of my underachieving ears. I run my fingers along my head behind and above my ear, and wonder what it would be like to confront metal, to feel the small area where the hair follicles are intentionally killed and where I would never have hair again. I fear that I will come to feel about the titanium screw as I did about the wick in my ear last week, and will want to rip it from my head, but like some avant garde body modification it’s permanent. There’s no going back and you’d better be pretty god damned certain that you can live the rest of your life with a piece of metal sticking out of your head like some kind of post-modern Frankenstein.
One of my surgeries removed a small piece of cartilage from my tragus (the kind of pointy part of your ear next to your head) to be used for some purpose or other in my middle ear. Now my tragus isn’t pointy; it’s just kind of flat. I doubt many people notice, but that’s not really the point. I notice all the time and I resent that such a change to my body was made without my really understanding and consenting to it, especially since the goal of the change ultimately failed. How much more will I resent a piece of titanium sticking out of my skull like some 19th-century medical experiment if it fails to provide the desired results? And what happens when I’m an old woman and my hair thins, allowing other people to see it, this thing which will surely by then be uncomfortably and sadly outdated? Will I feel like I’m walking around with an ear horn permanently attached to my head? Will getting this cutting edge technology now (which isn’t really so cutting edge: it’s been around since the ’70s) brand me, place me into a sort of time capsule, and make my very body obsolete by the time I have grandchildren?
We’re used to thinking of the human body as timeless, but this thing would place me in a very definite time, and that makes me uneasy for reasons I can’t identify. Somehow it’s like putting a time stamp or an expiration date on my very body. I’m afraid that when I’m 70 people will look at my body and think of it the way we do now about floppy disks: so critical to our lives in the early 90s and so laughably inadequate and outdated, even quaint, now. Our bodies should be timeless, immune to the whims and follies of technological fashions, and if I do this I’m not sure that mine will be. Will my grandchildren look upon my Baha screw the way I look at my parents’ bellbottoms, with an uneasy, indulgent smile, like I’m some sort of unfashionable relic of a bygone era that’s only cool at retro parties?
Mostly, I’m afraid that the world will just be too loud for me. Some noises – the creaking of our hundred-year-old wood floors, the refrigerator in an otherwise quiet kitchen, my son’s cries when he gets himself really worked up – sound pretty darn loud already. Will they become unbearable? And how much else will I hear that I don’t know about and don’t want to know about? What if I simply don’t want to hear everything I’m suddenly able to hear? If someone gives you the gift of hearing after 20 years of silence, oughtn’t you be grateful and ecstatic? But maybe life is just simply easier with a bit of quiet.
When I dialed the doctor’s office phone number it took me several minutes of shaking and crying before I was able to actually hit Send. I kept picturing the doctor’s office, imagining it as it was when I was going there, fearing I’d be able to just sense Dr. B’s presence on the other end of the line. When I looked him up to find the phone number the website included his picture and the sight of him brought needles of tears into my eyes. He’s not a bad man and I rationally know that, and as a child I even liked him. But 20 years later he’s become a sort of Boogeyman in my mind and his visage, his existence really, terrifies me.
When I told my husband about how difficult it was to actually call the doctor’s office he said, “You experienced a childhood trauma, it’s normal, it’s to be expected.” While I appreciated his saying it, I don’t like to call it childhood trauma because, oh, boo hoo, middle-class white girl is so traumatized from receiving the best medical care in the world, what a fucking tragedy. But I can’t deny that certain medical places, people, and procedures bring my irrational and uncontrollable subconscious to the top and completely stifle reason and calmness.
Still, the 9-year-old me has been hanging around here a lot lately, reappearing at most inconvenient times and stubbornly sticking around like a bad case of hiccups. Yesterday, I wondered what she would think of me for thinking about maybe not getting the Baha. I know instantly that she would call me a coward and cry her eyes out at my feet, begging me to just suck it up and get the surgery, to let her hear. I’ve never put much stock in wondering what our younger selves would think of us. After all, our younger selves don’t have the benefit of our experience; what do they know? But inherent in that notion is the assumption that our experience is indeed a benefit, and not a detriment, as mine perhaps is. It is only the 20 intervening years that have turned all those surgeries into trauma. I remember my parents at the time repeatedly calling me strong and brave, and me thinking, every time, “That’s stupid. I’m not strong. I have to do this; I don’t have any other choice. Brave people do scary things they don’t have to do.”
Well, kiddo, I am trying to be brave for you, but, like me, our stuffed zebra – that powerful talisman you took to every surgery – has been aged by these last 20 years and he no longer seems to have the strength to push me forward. He wants to rest and frankly, so do I. He tells me that we’ve been doing just fine since we got the hearing aid for the left ear, and maybe that would be enough for you, that if you knew about that maybe you’d be content and wouldn’t need the right ear, too.
But I know he’s wrong and I know you would never settle for “getting by,” and I know you’d be disgusted by a few fears keeping me from even trying.
I wanna go back to going crazy
Believing every word that I was told
You know sometimes growing up I think I’m getting wiser,
And then other times I think I’m getting old.*
*Todd Snider – I Spoke As a Child