My Cochlear Implant Story: Part Two

Why? Well, why not?

But let me back up. I had a list of reasons that kept me from getting an implant sooner.

1. Too old. 

2. Too invasive.

3. Doing alright with my existing set-up.

It's a pretty short list, yeah but I guess the whole list was also shrouded in fear, even if I didn't want to admit it. 

My mother, an AuD, had been urging me for a few years to think about getting a cochlear implant. I usually mumbled something along the lines of "sure, sure, maybe, someday," which meant...well, never, really. 

Finally, I agreed to go for a consultation at NYU. I knew the technology had come a long way, and my hearing was rapidly deteriorating. I let my mother make the appointment for me because why not? Just because I'm in my late 30s, doesn't mean I can't let my mother do stuff for me, right?! Mom came down to the city and together, we went to talk to Dr. Shapiro. After that consultation, I was more on board with the idea, especially after I found out I didn't have to shave my head to get the implant. (Don't give me side-eye. I know what you're thinking but I have enough problems without having to walk around with a half-shaved head.)

To determine candidacy for an implant, I was evaluated by another audiologist at NYU (hi, Laurel!). It was your standard hearing testing, just longer and more thorough. One of the tests determined speech discrimination.

What's the opposite of passing with flying colors? Failing with drooping, sagging colors? I listened to an audio recording of a nice fellow saying "Ready?," followed by a sentence I needed to process and repeat. Of the ten sentences, I understood one: "The train is leaving the station." And something about a banana. 

Yup, right ear: useless. With an aid, I did not do much better, as far as speech discrimination goes.

May 9th:

Day I after #cochlearimplant surgery ain't pretty but not as bad I thought. No pain meds yet, up and about but mostly in bed.

A photo posted by The Real Nani (@the_real_nani) on May 10, 2016 at 3:16pm PDT

A month after the surgery, my implant was activated. In those YouTube videos with people getting their implants turned on, it always seems amazing! And it is!  But you know...it wasn't like that for me. I've been wearing hearing aids for 34 years, so sound is not new for me, the way it is for people who have never heard anything. The activation appointment was exciting but not overwhelming. Laurel, my audiologist at NYU, tested my speech discrimination on activation day and I couldn't really make out anything. What was REALLY exciting was the appointment where Laurel tested my speech discrimination again and I actually understood what she was saying--sounds, words, phrases, sentences. It wasn't 100% but it was pretty good and a vast improvement over that first day.

There were also moments like this:

Yesterday, I heard a cicada for the first time, which my sister identified for me. It seems like such a small thing, hearing these sounds of nature but for someone who has never heard them, it's a whole new world. These moments make me feel vindicated in my decision to get the cochlear implant.  A speech therapist I met with at Rusk Institute kept calling it a "baby brain," and it really is, because so much is new for my brain.  The brain, you guys, is amazing and I never knew just HOW amazing the brain was until I got this implant. Just incredible. 

Want to know more about how the cochlear implant work its' magic? Check out this video from Cochlear America:

My Cochlear Implant Story, Part One.

I have a pretty little clay bowl that my mom's friend Sonny gave me last year. It took me a while to figure out how best to use it because it's too precious to dirty up with food. It finally landed on top of my dresser, as a catch-all for my jewelry, which I take off nightly. I also keep my eyeglasses and hearing aids in it. 

On Sunday night, I dropped my right hearing aid in it for the final time. 

The following morning, I was up at 4am, waiting to be picked up by my dad and sister, ready to take me to NYU for what seemed to be the next logical step in this journey I've been on since I was born. 

5:40am, NYC

A video posted by The Real Nani (@the_real_nani) on May 9, 2016 at 2:33am PDT

Someone was a little freaked out about her #cochlearimplant surgery! #deaf

A photo posted by The Real Nani (@the_real_nani) on May 10, 2016 at 3:07pm PDT

By 7:15, I was in the OR, with a mask over my face and counting down to sleep. 

I woke up some hours later with a huge bandage over my right ear, to a friendly nurse offering me water for my parched throat. 

Day I after #cochlearimplant surgery ain't pretty but not as bad I thought. No pain meds yet, up and about but mostly in bed.

A photo posted by The Real Nani (@the_real_nani) on May 10, 2016 at 3:16pm PDT

Day2: Recovery is always better with a fat cat to keep you company. #cochlearimplant #catsofinstagram

A photo posted by The Real Nani (@the_real_nani) on May 11, 2016 at 6:42am PDT

I guess I'll call this Cochlear Implant: Part One. The surgery was a huge step but it's not the most important step. That comes about a month from now, when the device is activated. As nerve-wracking as surgery is, it pales in comparison to the anxiety of waiting to find out what kind of effect, if any at all, the surgery will have.

Some things about how I'm feeling:

1. When I burp, my ear pops. 
2. I'm not supposed to blow my nose vigorously during the initial recovery period. Anyone who knows me knows this is impossible for me. But the stars have aligned this week, and I've suffered no allergy attacks since coming home, and therefore, have no need to blow my nose. 
3. I wore no hearing aid at all for the first day or so of being home. I don't know why. The silence was nice, though I'm sure it was annoying for everyone around me. 
4. My bandage very quickly become a security blanket of sorts. I was hesitant to take it off and afraid of what would be underneath. 
5. But I did take it off, on day 2, with Henry's help. My ear is banged up, bruised and swollen but not nearly as monstrous as I thought it might look. When it looks prettier, I'll show you a picture. 
6. On Day 2, I was able to putter around a bit before feeling light-headed and going back to bed. Today, Day 3, I made lunch for the kids, and put together end-of-year gifts for the hebrew school teachers before I had to go back to bed. Progress. 
7. Right now, the tip of my ear is numb and the inside of my ear feels stiff. But I don't feel much pain, just soreness and discomfort. 
8. I was sent home with Vicodin which is always fun. I've taken it twice so far, to help me sleep. 
9. With or without the Vicodin, all this napping is giving me some funky dreams, and not really pleasantly funky either. 
10. For the next few weeks, my brain will have no input from the right ear, not that it had much to begin with. Then, there'll be lots of input. We'll see how that goes. 
11. Bonus: While I was writing this, I got an email from my audiologist with an order form attached, asking what kind of equipment I wanted and in what color.  I guess it's time to countdown to activation day. 

PS I know some of you wanted to know why and how I made this decision, but that's another blog post and I'll do it, promise. xo

On the Outside, Looking In.

http://thinkingchild.org.uk

My eyes got watery, on the verge of tears, as I sat there, stone-faced, willing myself to not succumb at that moment to what I was feeling. Frustration? Loneliness? Isolation.

All of it.

And I felt stuck, having realized too late that THIS was not going to work. I tried to appear as though I were listening intently to the readers I couldn't see.

Oh, everyone is chuckling. I'll chuckle, too. 

Oh, everyone is clapping. It must be over. I'll clap, too. For a different reason. 

I'm working hard here but my gaze inevitably travels, and with it, my attention. I study the covers of books on the shelves around me. I stare into space. My fingers itches to open a book, to pick up a pen, to do anything but sit here and pretend I fit in. I feel paralyzed. It would be rude to just get up and leave with no explanation. And I'm certainly not about to put my hand up and request that we all sit facing each other. I'm loathe to invite pity of any kind.

So, I sit and bear it, willing myself through an hour and half of hearing, but not understanding.

Am I glaring? I hope not. 

I don't begrudge any of these people the privilege of hearing. I just want the same privilege. I look down in my lap, and look up again, hoping that my expression is friendlier. But I feel my face harden, almost grimacing.

For god's sake, are we done yet?

Finally, I get the cue that we are wrapping up. I put on my coat, and wait until it seems that it's finally, finally over, then I bolt for the door, saying goodbye to no one, and knowing I'll never come back.  Because, anyway, as I was sitting there feeling sorry for myself and drowning in my internal monologue, I realized that I don't want this kind of workshop anyway, where we write for twenty minutes, spend an hour and half listening to people read, then get critiqued on something written off the cuff. It's absurd, if you ask me.

So, that solves that problem. I have a legitimate, non-deafie excuse to never do that again, and have saved myself the trouble of sticking my neck out, of being the one that asks everyone else to change, to uproot, to adjust, to adapt. In this world, that's my burden.

All You Need is Love...Right?

I have a very small, loose network of people I know, parenting with some kind of disability. This is not on purpose. It reflects the general pattern of my life-- I am a deaf person, living in a hearing world. I do not sign, I did not go to a deaf school (except for one year at The Clarke School for the Deaf) and I was fully mainstreamed in school. And now, I am a deaf person parenting in a hearing world, to hearing children. The deaf parents I know now are people that I've known and been friends with for a long time. I can count them on one hand. I have one other friend with a different physical disability, and while her specific challenges are different from mine, she surely sometimes views her parenting through the lens of her disability, as I do mine. 

In the beginning, when I first became a parent, I spent a little bit of time sorting out what were "normal" parenting challenges and what challenges were uniquely attributed to my deafness. It's not as clearcut in those infant years, where communication is basic. The older my children get, the more time I spend doing this sorting, but it also becomes easier to differentiate between what is universal and what is unique. When my children talk back, I take that as universal and correct the behavior accordingly. When they do or say something specifically because they assume I can't hear them, it becomes a matter of not only correcting but explaining why that is not fair. That actually does not happen too often at this point, and I can't think of any concrete examples.
What I'm learning at this point is I need to strike a balance between letting them help me when I miss something and actually relying on them to be my "life interpreters," much in the same way that I rely on my husband or my sister to do this for me sometimes. It's an unfair burden, I think, to place on a small child, however easy or naturally it may come for her, because she was born with a helpful, authoritative nature.
One of the neat things about my daughter being nearly five is that I'm really able to begin to understand her, to read her, to recognize behaviors that are familiar to me because I was the same way at her age. In the context of parenting with a disability, my observations of her behavior and personality are even more important because I cannot take our ability to communicate well for granted. I'm more careful to make sure that I'm really hearing what she is telling me, looking for clues in her body language and facial expressions. This is really not much different from how I function in social situations-- I compensate for not always being sure I've caught the proper tone in someone's voice by looking for the other cues that confirm my observation, or lack thereof.
I know that as my children get older, the challenges will evolve. Some of it will come from their own heightened awareness of what it means to have a deaf parent, and some of it will come from my own need to adjust accordingly. This month, for From Left to Write, I signed up to read Raising Cubby, by John Elder Robison. I'd not heard of him before this book sign-up but he is a father with Asperger's, raising a son who also has Asperger's. While our parenting challenges are different, I found parallels in the way his parenting evolved as his son grew older. While the tone of the book very much reflects his Aspergian stream of consciousness, I immediately related to his endless anxiety about becoming a parent, and all the questions he asks himself once he actually becomes a parent.
I think the fear,  at some point and at some level, of screwing up your own children is a universal parenting trait and I take some solace in that. The adage "all you need is love" applies just as much to me as it does to any other parent, disability or not.

This post was inspired by Raising Cubby: A Father and Son’s Adventures with Asperger’s, Trains, Tractors, and High Explosives by John Elder Robison. Parenting is a challenging job, but what challenges does a parent with Asperger's face? Join From Left to Write on March 12 as we discuss Raising Cubby. As a member, I received a copy of the book for review purposes. Links to the book are IndieBound affiliate links. 

Deaf

I don't know how to write about being deaf. I don't know how to write about it any more than I know how to write about being a woman or being 33. Being deaf is a physical condition that somehow also exists as a condition of personality. Is personality the right word? I don't know what I mean to say but I know how I mean. Let's see if I can describe it to you.

Consider the age-old argument: nature versus nurture.  The argument, when looking at siblings, leans favorably towards nature. After all, siblings raised by the same parents in the same way, turn out so different. "This is the shy one." "That's the athletic one." "Oh, she's the smart one." Nature accounts for these differences. But one could argue that parents change as they gain wisdom and experience. An older child might not reap the benefits that a younger child does, of a parent that is older and wiser.

So, am I the person I am because I'm deaf or would I be this person regardless? I don't even think, at 33, that I know myself well enough to answer this question. My early experience with deafness imbued me with a "can-do" attitude. My parents pushed, gently but firmly, so that today I stand before you, a college graduate, the holder of a Master's degree, a writer, a former teacher, a traveller, a mother. But maybe it was already in my nature to be "can-do," to be a reader and a writer, a person who seeks out adventure in other countries.  Should we blame nurture or nature for my quick temper, my big mouth, my acceptance of my own mediocrity?

There have been many influences along the way. Early speech intervention, a year at a boarding school for deaf children, years of being mainstreamed in public school, a stepmother that is a speech pathologist, a mother that is an audiologist, a father who said "come hell or high water, you'll go to NYU," the nurturing that I received by going to a small college within a private university, chance meetings with people who extended to me patience, kindness, and empathy, some of those people becoming my dearest friends. (I well up at the thought.)

All this took place within the context of a hearing world. I can count on one hand the number of deaf friends I have. I belong to no deaf community, capital D or otherwise. When I rejoice, when I lament, when I commiserate, when I give, when I take, I do those things not as a deaf person but as me.  To be sure, it becomes apparently rather quickly that I am deaf, if you are paying attention. My eyes will be trained on your face as you speak, maybe making you feel a little uncomfortable. You'll talk to me when my back is turned and get only silence in return. You might have trouble understanding some of my speech, then we'll both feel sheepish and embarrassed when you figure it out.  I might even muster up the courage to say "I'm deaf. I have no idea what you just said to me," and then you'll apologize and repeat what you said, enunciating carefully and kind of loudly. I'll take my punishment humbly and just smile gratefully, while inwardly rolling my eyes.

When I'm asked to write about being deaf, I hit a wall. What does "being deaf" even mean? I am deaf but deafness is not a behavior, as the word "being" implies. For me, it is a condition. For a lot of other people, it is a culture, a way of life and they could probably answer the question more easily than could I. I can write about how my life is affected by deafness or how my relationships are formed as a result of my deafness but I can't be deaf. It seems unfair to me, as a person, to be reduced to that one physical characteristic.