BRAVE NEW WORLD

Ok I feel like I am back to myself enough to write a new blog post. My surgery last week went well.  Bill and I arrived at the hospital at dawn, and went to admitting to sign in.  After  putting on my ID bracelet they sent me to the waiting area to be called back to the prep room, were we waited for about fifteen minutes.  Just when I asked Bill… “How long do you think we will have to wait here?,” Bill says.. they called your name.  I look up.. I look around.. I don’t see anyone.  Then the nurse comes from down a hallway and through another door, calling my name again. I was slightly annoyed.  Don’t they know why I am here?   Bill patted my hand as he has had to many times over the years,  and said, “Calm down, babe.

” annoyed

Anyway I got set up in my surgical gown, met the anesthesiologist, the surgeon, and the nurse in charge. Apparently the  rep from the implant company, Med-El, was there, but I didnt get to meet with them. They all seemed very competent, and more importantly, well-rested.  My mom came to sit with me for a while before going to get the girls off to school and then I sobbed as Bill walked with my down the hallway to the operating room.  It’s very surreal to go into an operating room to having something done that is not going to fix you, per se, but take something away.  Frantic thoughts of “What am I DOING?” ran through my head as I lay down on the operating table…. And then I was out.

I should clarify- the surgery is just the first step, where they install the implant device.  The surgery is very invasive and generally destroys what natural hearing is left, so I knew that when I woke up from surgery I would not be able to hear at all.  The hearing part comes at activation two weeks later when they give me the outer processors to wear, which connect with the implant. There’s something almost sadomasochistic about cochlear implant surgery, and I can see how Deaf culture looks at it as an offensive thing.   It’s like you are mutilating your own body… and for what?  I met recently with someone who is Deaf, and has lived within the Deaf culture for much of his life.  He asked me why I am having this surgery.  He asked “Why are you afraid of just being Deaf?”  He really threw me for a loop because honestly I had never thought of it as an option.  Thinking about it, it did seem like it could be such a relief…to just stop trying.  To just be me, as is.  Deaf culture is fascinating and I’m not opposed to learning more about it or being more a part of it.  But then I thought about what ME is.  I am not a part of that world and I never have been.  I was mainstreamed without it being a thought, and  I don’t know if I could ever fully be a part of that world. I don’t know deaf people, or people who sign, or even people who wear hearing aids like me.  I am only now learning sign language, and I have a long way to go. Im like a bi-racial child who was raised in lily-white environment and then plopped back in China.  I dont know the culture, the language, anything well enough to actually live there and have that be my life.  Im not deaf enough to live as a Deaf person. My world includes laughter, music, shouting and NOISE.   I like hearing my children giggle and plot amongst themselves, I like hearing,  “I love you,” and I still have high hopes of attending a New Kids on the Block concert some day.  So in my case I guess the ends justify the means, or at least I fervently pray they will, because I still want to be a part of  my childrens’ world and the world at large.

I woke up in the recovery area feeling somewhat out of it but not really in pain.  I couldn’t hear but it was the same as if I didn’t have my hearing aid on.  Prior to surgery I might have heard some loud banging going on or the girls screeching at each other, but it’s basically the same.  I had two cups on each ear, wrapped in pressure bandaging, and a huge fat lip; I was sure that the anesthesiologist beat me with the breathing tube when extubating me. I was starving after surgery- I hadn’t ate since 8pm the night before.  Do NOT mess with me when I’m hungry.  I will bite your head off.  The poor nurse tried to stop and see what it was I wanted and I snapped, “Just do whatever you need to fucking do so you can get me out of here IAMFUCKINGHUNGRY!”.  I’m sorry, nice nurse.

feed

We removed the pressure bandage 8 hours later as instructed, and within a few hours my face swelled to enormous proportions.  I looked like Big Momma in a fat suit and when Elena first saw me she gave me a fat side eye and said “I’m not your friend.”  OKAAAAY. Melinda stroked my face and coo’ed “My mommyyyyy”.   Natalya brought me sushi.  I can always count on my firstborn.  The last few days I have been focused on resting and trying to get my big head to go back to normal.  I did a ton of research about this surgery and I felt well prepared going in but the one thing I was not counting on was being so uncomfortable.  Pain seemed inevitable, but I didn’t really have much, and the swelling is the one thing no one discussed on all the forums that I went on in the last few months, even though it is apparently pretty common.  I emailed my surgeon..”Um my head looks like a beach ball, should I be concerned?”  She replied,”well, you did take off the pressure bandage.”   WELL YOU TOLD ME TO!  If I had known I was going to look like Jabba the Hutts older sister I’d have kept it on longer!

ew3

I’ve been sleeping upright on the couch trying to keep my head elevated to reduce the swelling and I think it’s almost gone. I am looking forward to seeing the doctor tomorrow to check on my stitches and my activation will be on October 7th.  I plan to videotape it, so hopefully I will look like a normal human being again, and I will post it on here.  I will have a long road ahead of me.  I don’t know whether I will hear right away or if my brain will need time to adjust.  It will be a process of relearning how to hear, and it will require patience, on my part and on that of everyone around me.  Hopefully I will have lots of food to keep me calm.

I truly appreciate all the well wishes and comments on my last blog, which had me overwhelmed with love and support.

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SHARING IS CARING

SO I wanted to share that in a few days I will be having cochlear implant surgery.  You all know I have worn a hearing aid and asking you all, “Huh?”  for most of my life.  I did well for a long time, but over the last few years my hearing has gotten worse.  One day during college I woke up and I couldn’t hear anything…anything at all.  I was frantic. I changed my battery, I cleaned it out, but it wasn’t my hearing aid. I spent a miserable two weeks in tears, trying to get through finals, study for LSATS, and teach my parents how to use Yahoo messenger. That was when Natalya started answering the phone for me.  Then just as suddenly as I lost it…my hearing came back, but not all of it.   The doctors have no explanation for what happened, but basically I lost a lot of decibels in the frequencies that make audio sound clear.  So I started using captions on the TV, and only used my phone when I absolutely had to use it, with captions.  After I graduated, I started working as a social worker. Luckily, technology has kept pace with my slowly progressing hearing loss… I had a Sidekick, a Blackberry (why don’t they die already) and thank god for Apple and their iPhone (definitely getting the 6+… eventually…. and a smartwatch.). I would basically be a shut-in without Facebook. And I have had  a lot of supportive people in my life.. my parents, Bill, my long-suffering children…(MOOOOOOM will you just LISTEN TO MEEEEE).

But for  the last…like, decade  now,  I have been really, really busy with school, work,  with Natalya, and then Melly and Nena, and just trying to get through life, so for a long time I was able to say that I didn’t call people, didn’t go out anymore, didn’t visit friends… because I was busy.  People stopped calling because I didn’t answer.  I hate going places where there’s lots of people-if I came to your event, birthday, whatever…know that you’re special cause it took a lot of mental effort on my part. But really…it’s just hard… and annoying… and embarrassing… being in environments where it’s hard to hear, and I have to ask people to repeat themselves, or pretend I heard what they said, but I really didn’t- or worse yet pretending I heard, and the other person knows I didn’t hear, but we both just nod and smile like its nothing. Or in some people’s case, snicker about how Desi didn’t hear whateverhahaha. Or worse yet they say never mind…it wasn’t important. It was important.  To me.

So anyway one day a few months ago I  had another ear infection and I took out my hearing aid, put it down…and two minutes later Melinda comes in the room crying, while holding what looks like a mottled piece of plastic.  My dog ate my hearing aid. Melinda shared it with him. Yes, these things only happen to me.

SHARING

So I went to the audiologist to get my hearing tested so I could replace it, and they told me that I only have 3% speech discrimination, down from 20% two years ago.  I was shocked but at the same time… it made so much sense. The doctor explained that I probably didn’t notice because it was so gradual and I lip read so well.  She explained that listening to people and lipreading are basically two different languages and my brain is constantly trying to interpret both.  So she brought up cochlear implants again.  It’s not the first time they’ve wanted me to get them. I’ve been turning them down for the better part of ten years, partly out of vanity, and partly because I just wasn’t ready to have my head opened up.   At this point, though, I don’t have much to lose. My hearing is not going to get better, its going to get worse.  There is nothing that will CURE my hearing, at least not in my lifetime.  When I am 80 I will probably want silence and will be yelling at the kids to get off my lawn.

So I decided that I am ready to take the leap and get the surgery. Unlike my hearing aid, which just amplifies sound and makes everything loud, the implant will essentially bypass everything that is wrong with my ears, and may possibly give me sound in my right ear, which I have never heard from.  The implant consists of an external processor that sits behind the ear like my hearing aid, and a second portion that is surgically placed under the skin along with a small magnet. An electrode from that portion will be threaded directly into my cochlea and will actually process sound and send the information to my brain. Hopefully I will regain my ability to understand speech more clearly, and possibly improve it beyond what it has been for much of my life.

EAR

IMMPLANT

SO that’s what I will be doing on Thursday.   I’m excited…a little terrified, bust mostly hopeful.  This is not going to restore my hearing.  It’s going to destroy my natural hearing and provide, I guess, bionic hearing. My surgeon described it as a little computer being installed in my brain. I don’t know what the outcome will be, but at least I can say I tried my best to make life easier, for me and for my family…to be a better mom,  to be a better social worker, to be a better friend (yes I know I’ve been a terrible friend, but I have an excuse!).

SO this is my blog.. There was a lot more thoughts, research, rants, tears,  and late night text messages involved in this decision to have surgery, and I had planned to start a blog a long time ago explaining all this, but eh.. I’m busy.  I still havent thought of the perfect name, but this will do for now. It will probably be a mishmash of my experiences post surgery (the science behind it is fascinating), and along with my usual trials and travails of parenting and things that annoy me. If you have read this far, thank you for reading. Thank you thank you thank you to those of you who have been on the receiving end of above mentioned tears,rants, and late night messages.

If youre in the mood for more reading, please read this:  http://limpingchicken.com/2014/09/10/deaf-hearing-identity/  Its basically my life thus far.