In our book, Keeping Kyrie, we told the story of Mary getting her cochlear implants.
We also told her story in her own children’s picture book,Â Marvelous Mary.
It was a decision I always wondered what I would decide if I had a Deaf child, and then there she was – but still in foster care and her biological mother made the decision.
In our Keeping Kyrie book, we also tell the story of me getting my own cochlear implants, which was actually a really hard story to tell.
Getting cochlear implants was a difficult decision, but it was what I decided for me at that time.
I did not grow up in American Deaf schools, could not consistently get interpreters where I lived, did not have family who learned ASL or signed at all consistently, and the Deaf community I could access was so limited: either drama that I didn’t want, alcohol that I didn’t do, gossip in which I couldn’t participate, bullying that I didn’t want, or professional like me and isolated and living their own lives where we had little contact with each other (which maybe could have been different of an experience for me if I hadn’t been the only Deaf counselor in the state).
Regardless, I was so limited in access that getting cochlear implants became the choice for me.
I wanted to explore. I wanted to restore. I wanted new tools to try.
And so I did.
I culturally offended myself, and got the cochlear implants.
Maybe I got tired of fighting, and gave up.Â Maybe I was worn out from defending myself, and quit.
Maybe I wanted my voice back in a world where no one could see it.
But it was my choice, and I own that, but really want hearing people to understand that the cochlear implants are a tool and not a cure.Â I hear nothing at all, nothing, when they are not on my head.Â When I go to bed at night, I take them off, and I hear nothing.Â When I go swimming, I take them off, and I hear nothing.Â When that lady rear-ended my car a few years ago, she hit me hard enough to knock them off my head, and I could hear nothing.Â I am Deaf.
As a Deaf person, using sign language is a big part of my life.Â That in itself is its own journey for me, as I mentioned not growing up in Deaf schools in America, and living in so many places and countries even well into my adulthood.Â It took staying put in one place long enough to really become fluent in ASL specifically, and still now my accent or confusions or mixing with my other signs is as much as any other “immigrant” with a second language.Â It’s part of why I know the Deaf school is so important to Mary and to Kyrie, and I am so glad they are going there and growing up there, and I hope we get to stay for as long as they need.Â There are also regional “accents” or specific signs used differently in different areas around the country, just like a Jersey accent or a Michigan accent or a Louisiana accent or a Boston accent.Â Mary and I have loved learning new signs used here in Kansas City, and its fun for us to compare to other signs we know from other places or countries.
That’s the preface I feel pressured to share, before I explain about mappings, because getting cochlear implants was a big deal for me.Â It was a big deal for Mary.Â It’s also not something we would ever say anyone else should do, or ought to do.Â It’s a very personal decision.Â It’s also not something to do instead of sign language, or to cure deafness.Â I want to be clear about that.Â It’s only a tool, and not a tool that works for everyone, and not a tool chosen by everyone.
But I did, and that’s the short version of why I did.
Here’s a picture of my scar on one side, back when I had no hair from chemo this summer.
Maybe I just wanted to see if it would change things for me at all, but mostly I wanted more choices in access to the world around me, during a time in my life when it felt like I had few choices.
But it’s more complicated than that, because cochlear implants are pretty controversial in the Deaf community, and for good reason.
Deafness, from a community perspective, isn’t something we need cured. It’s who we are. It’s our culture. It’s our language.
I wanted access, not a cure.
It wasn’t like it is here, where now we have interpreters everywhere we go and even the people at the gas station can sign. I didn’t have a Deaf ward to go to for church. I couldn’t do my work without better access, and I wasn’t ready to move. It’s more complicated than all that, but for me, at the time, it seemed like it was the best choice.
And for me, in the context of my own life at that time, it was an amazing adventure that offered new freedom and independence and access in different ways than before.
It’s not something I would ever recommend to someone else, or ever wish on anyone.Â It was a brutal surgery.Â Besides the actual healing, my taste nerve was cut along with the auditory nerve (the two nerves swirl around each other like a rope), so I entirely lost my sense of taste for two years, and am even just now still getting some of that back.Â In one surgery, my skull was too thin and so they had to change where the implant was placed, and now they are forever uneven on the back of my head, which basically cured me of any OCD because my choices were to either let it go or just be crazy.Â It just is.Â Mary’s are more even on her head, but the surgeries are usually done six months apart at least, to give your brain time to heal, so that’s why they are often spaced a little differently and not perfectly placed.Â The doctors are getting a little better at it, though, I have noticed, and placing them higher up now, too, so they don’t fall off so much. I have to admit I am a little jealous of that.
Having cochlear implants doesn’t solve everything, either.Â In some ways, it makes things harder.Â Like now people can assume I hear and understand them when I don’t.Â People don’t try as hard to sign with me.Â I get asked to do things that I really am not able to do, but people forget I am Deaf because of the implants.Â Â It also isolates me in some ways, because a lot of Deaf people still resent them and a lot of hearing people still think they are a cure.Â It’s hard to find a place in this “biracial” world between cultures.
But it’s not all bad.Â I have learned amazing things, and gotten new experiences I never would have had if I hadn’t tried them.Â There are some things it makes easier with fewer adaptions.Â It was a god-send while living in Oklahoma where it was so hard to get access or interpreters or things like that which were my right but not legally enforced.
I shouldn’t have to have surgery to know what’s happening at your mental health conference.
Anyway, here’s how cochlear implants work:
There are things I love about them, like listening to Nathan practice violin, or not getting hit by cars as often, or sometimes I can hear the birds when I go for a walk.Â There are amazing sounds in the world, like amazing colors, and I am grateful to have gotten a taste of experiencing them in this phase of my life.Â Â I love hearing my children laughing in the backyard, and I love that my “hearing” will stay the same as I get older instead of losing it later.Â I already dealt with that, so at least that’s one thing on my side health-wise.
But what matters are the children’s smiles, and how they play with each other.Â I can see that, without hearing.Â Â What matters is not the words people say to me, but the tone in which they present it and what their real motives are.Â I can sense that, without hearing.Â What matters is that I look both ways before crossing a street, which you would think I am old enough to have some common sense to do.
And living here, in Kansas City, my cochlear implants are almost irrelevant.Â There is access everywhere.Â I have interpreters when my children have IEP meetings.Â I go to a Deaf church.Â My oldest and youngest daughters go to Deaf school, and are more fluent everyday, and they help my other children practice and keep up and continue to make progress in their learning.Â We go to the theater, and there are open captions.Â We go to the grocery store, or the gas station, or doctors appointments, and there are people who can sign even without interpreters, and interpreters available when we ask.Â I have Deaf friends, who are gracious to me, even though I have cochlear implants.Â I have Deaf friends, for the first time, who also themselves have cochlear implants.Â It’s like Deaf Heaven here, and I wish I would have known a long time ago.
But now, here we are, in the middle of Deaf Mecca, and it is amazing.Â We love our life here, and the accessibility, and the schools, and the people.Â It’s been the most healing experience for all of us in ages.
Cochlear implants are not perfect, or the same as your God ears.Â There are 32 electrodes to my brain, and to Mary’s, which is not nearly as many channels as hearing people have naturally.Â It’s very rusty and robotic, which is part of why it is so terrifying for people who never heard anything to then try and adjust to the noise.Â Â Even with my having them eight years now, they are still very overstimulating and cause me great anxiety.Â Â Here is an excellent video about what that anxiety is like for people with Deaf anxiety – though I can’t use earbuds as a way to cope:
So even with cochlear implants, there is anxiety in some ways, and the cochlear implants are only a tool.Â They do not make me hearing.Â They do not take away my language.Â They do not make me understand everything.
It’s like voicing: in the times I use my voice, that does not make me hearing.
My cochlear implants are not a cure, only a tool.
Using a broom as a tool to sweep your kitchen doesn’t make you a witch.
Wearing cochlear implants as a tool for accessibility and experience doesn’t make me hearing.
Along those lines, voicing for myself, or using my voice, or even writing a blog instead of videoing a vlog is not the same as being hearing or understanding what others are saying.
I wanted to share all that because I have a lot of new friends who are learning about Deaf culture, and learning about sign language, and learning about tools (like cochlear implants).Â Â But most hearing people, either know someone who is losing their hearing or will even themselves lose their hearing, just as a natural part of getting older.Â So it’s kind of an important thing to talk about for everyone.
So since cochlear implants came up yesterday, when I took Mary for a “mapping”, let me explain them a little bit.Â I already shared the video above that shows how they work.Â But they also take some maintenance.
Here is a picture, from the computer screenshot, of what it looks like when we go to the audiologist for a “mapping”.Â The picture on the left shows the shape of the actual implant part that is inside our head (underneath the scalp, but nesting in a little crater carved into the skull).Â The picture on the right shows the tiny thread of electrodes (numbered) that are pushed into the cochlea to bypass the part of the ear that doesn’t work.Â Â These parts are both inside the head, and do not come out without surgery.Â They also cannot be replaced without surgery.
The part on the outside of our head that you can see is called the “processor”, which is the computer that picks up the sounds from the microphones and sends it to the coil that sticks to our head by a magnet to “talk” to the implant inside our head, like in the video above.
Anyway, each of those numbers of the “array” inside the cochlea represent a different frequency.Â So some are working to “catch” high sounds and some “catch” low sounds.Â These get interpreted into digital information by the computer processor (outside part on the head) and sent to this array, which sends it on to the brain as digital information.Â Â So it’s not the same as just amplifying what everyone hears, like a hearing aid.Â Â It’s like listening to sound through a very limited but incredible computer.
Here’s what it looks like inside the head:
I can’t even look at that picture, because it makes my ears hurt.Â Real or phantom pains, don’t know.Â But I cannot think about things shoved in my ears and just stuck forever without being able to get them out.Â I cannot be conscious of that because it would make me nuts.
But most of the time, you don’t even think about it, like not feeling your socks until they get stuck between your toes wrong.
People who get cochlear implants are either people who have not heard before, and want to try them, and so have to learn how to hear…. or they are people who have heard, lost their hearing, want to hear again, and now have to learn to hear digitally.
Either way, there is a HUGE learning curve, that takes years of practice, which is why so many people quit trying before the cochlear implants are very successful.Â Because it really takes a lot of work.Â And it’s kind of terrifying, but we will talk about that in a minute.
To learn to hear digitally, whether you knew sound before or not, you have to have the cochlear implants “mapped”.Â What they are mapping are those electrodes, meaning how much sound the electrodes send to the brain and which sounds the electrodes send to the brain.Â They do this by plugging in the outside processor into the computer, to show the settings of each electrode.
Each electrode shows up as a “channel”, just like if you had a sound board at some music event with microphones or instruments on the different channels.Â Each channel is a different frequency of low or high sounds.Â This is incredible technology, to get so many in there, even though it is still nothing like the way hearing people can hear 20,000 frequencies.Â Getting up to 16 or 22 is really kind of a big deal, but obviously nothing like actually hearing.
There are two things they test for in a mapping, and adjust for as best of a listening experience as possible.Â For one, they test basically how much of that frequency you can handle.Â It’s more than just how loud, but I don’t know how to explain it.Â But making sure that when that frequency is loud it doesn’t hurt or isn’t painful is part of the process.Â The other thing they adjust for is what is the very softest a sound can be and you still detect it that sound happening.Â Â This gives you a range for each frequency, of how soft a sound can be and you notice it to how loud it can be before it hurts.
That doesn’t mean loud sounds don’t hurt.Â It was two years before the sound of the toilet flushing, the dishwasher going, or the garage opening didn’t make me throw up.Â Kyrie or Barrett screaming still makes me knock my implants off my head sometimes, if it happens suddenly or unexpectedly.Â Fire alarms or ambulance sirens sting, no matter what your settings are.Â Those are extra loud sounds, and it just is.Â Sometimes my children are so loud, that it all turns to static, and I get super anxious and flustered and irritable because of that Deaf anxiety like in the video above.
But mostly, for normal everyday sounds, these settings from the “mapping” are what makes cochlear implants as comfortable as possible with as much quality sound as possible, for a good listening experience.
Getting a “mapping” happens pretty frequently when you first get cochlear implants, because they don’t turn on all those channels at once.Â You have to kind of work up to it, learning to tolerate it, and get used to what all the sounds mean.Â Â So in the beginning, it’s a mapping every week or couple of weeks for a while.
EachÂ mapping takes about two hours or sometimes three.Â Â It means sitting there, listening to beeps on one side, then another.Â It goes on so long that your brain just starts hearing phantom beeps, whether they are happening or not.Â It’s kind of a trippy experience, but not necessarily unpleasant.
Now Mary and I go for mappings about every six month or so, just to fine tune the sound we are hearing.Â Sometimes we try a new map, and it doesn’t work for some reason, and so we go back to the previous map for awhile before trying something new.Â I still cannot handle the two highest frequency electrodes, so have them turned on for a backup map on another setting.Â I can practice when I want, but just push a button when it is too much and those turn off.Â Â It’s kind of amazing.
But it’s not the same as real sound.
Here is a video people ask me about a lot, that shows what it is like to hear with cochlear implants.Â Â The same clip is played over and over, but you hear what it is like with more and more channels.Â Â The first clip is like when you first get cochlear implants and only have a few channels turned on, and then the next clip is like when you have more channels turned on but are still learning sound, and then the next clip is with all channel turned on (I don’t have all channels turned on) and better at learning sound, and then the last clip is what it is like for hearing people.Â Â There is an example of talking and an example of music.
I wouldn’t wish it on anyone.Â It’s that hard.Â It’s that brutal.Â It’s that terrifying, even now sometimes.
But it’s also amazing – as a tool – and an incredible gift for which I am grateful.
But even then, that doesn’t detract from my love for sign language or my culture, and that’s why it is so important to us that Mary and Kyrie be at the Deaf school where they will get to experience those things from so early in their lives.Â It’s a beautiful thing, ASL, and there is power in silence – even for hearing people.Â Â There are things I know and notice, feel and ponder, and experience in the world around me that I never would if I heard perfectly all the time or worse my cochlear implants all the time.
Now, if my hair would just grow back from chemo a little faster, I wouldn’t look quite so much like I just escaped the Matrix.