Heather’s Cochlear Implant Journey: Log 2.22.2018

Activation Day!!

After 3 weeks of my head buzzing and whirring because of the post-surgery fluid in my inner ear, I now get to hear squeaky robots on acid!  Yay! Getting used to a cochlear implant is a giant barrel of fun.  But let me back up.

A few days ago, when I went in The House Ear Clinic to get my CI turned on, I was a total mess.  I was shaking like a tray full of Jell-O shots and I could not eat my breakfast.  And if you know anything about me, you know that I have not missed a meal since I was born.  Actually, I spend most of my days trying to justify EXTRA meals. But here I was, passing up delicious Leapin’ Lemurs because I was so nervous about what would happen.  Would I be able to hear anything?  Or would it be just a horrible roar of noise?

My amazing audiologist, I will call her Bwana because I have not asked her permission to use her name in this blog, was so reassuring.  She said hello, then stuck the processor to my head.  Just like that!  Like, “Get over yourself and quit worrying and just put the processor on, for goshes sake!”

If you’re not familiar, the implant processor sits behind your ear like a regular hearing aid (only larger) and then connects to the implant that sits between your head skin and skull via a magnet.  Cool, right? My kids are already calling me “magnet brain.”  With Affection.  Right?  My darlings are so sweet!

Anyway, I didn’t really hear anything at first, and then hubby said something and I have to admit, I might have let out the teensiest, little un-ladylike snort.  Because here was manly Mr. B. looking at me with awe and concern, and this squeaky female robot voice was coming out of his mouth. LOL! And then Bwana talked and the SAME squealy voice came out of her! I was living in a world where everyone was a FemBot.  But not the cool kind that are gorgeous and wear silver bikinis and shoot bullets out of their fuzzy lingerie boobs – because that is a world I would eagerly live in.

I told Bawana about the FemBots, and she said this was “normal” (??) and that I just needed to relax so that my brain could get used to the new type of stimulus.  See, your cochlea turns sounds it into neuronal pulses that go to your brain for processing via your aural nerve.  But of course, my cochlea is a lump of garbage, so now I have these electrodes stuck in there that are trying to make up for that fact.  Electrical pulses are now traveling to my brain and my brain is having NONE of that.  Miss Brain is sayin’, “Wait.  What?  Are you kidding me?  I can’t understand this s*&t!” I had no choice but to sass back,“Yo brain!  Be Zen. Just relax and try to get used to it.  And stop making me want to rip my CI out and throw it across the room, okay?”

Yes, besides regularly talking to myself, I am now talking to my major organs.

After about an hour, I could kinda make sense of some of the crazy sounds in my head and could even understand dear hubby a bit.  We got into the car, and the whole way home, I dictated the sounds that I could hear that I have not heard for over 20 years.  “Is that the sound of tires on the road?  OMG.  Is that what the left turn signal sounds like? Who the heck thought of that? Wait.  I can hear myself breathe!  Soooooo annoying! Can you hear yourself breathe hubby?  Can you?” So after about four minutes of this, Mr. B. was ready to push me out of the car onto Alvarado Street.  Thank goodness his arms are short and I am really good at ducking.

The rest of the way home (in silence so I could keep my marriage), I was looking forward to hearing the birds that flit around my neighborhood.  I used to love the sound of birds.  When we pulled up to the driveway, I saw a whole flock in the cypress tree and quickly stuck my head out the open window.

But, I could not hear the birds.  I guess that is for another day.

Heather’s Cochlear Impant Journey: Log 2.14.2018

Okay, okay, I know this is gross, but I wanted you to see this little miracle.

This tiny scar is all I have to show for the fact that I have a sophisticated sound receiver sitting between my skull and the skin on my head. And that receiver is attached to electrodes that wind into my cochlea and will one day, when the device can be turned on, help me hear.  For the first time in human history, we have the ability to restore a sense.

If you’re a confused about how this works, please see this fabulous graphic I stole:cochlear-diagramRight now the receiver in my head isn’t turned on because there is too much swelling around the surgical site.  It’s just sitting there, surrounded by goopy fluid that is pressing on my auditory nerve endings, causing me to hear random beeps and whirs and, for some reason, Eric Clapton guitar chords. Is that because my head is stuck in the 80s? My darling teenagers would have lots to say about that.

Speaking of — two nights ago, as I was trying to get to sleep, I heard the washing machine running. Now, you need to understand that I go a little postal about midnight laundering — that zzzt – zzzt –zzzt makes me nuts! And why is it that teenage girls often decide that they need to throw in a load of laundry at 11pm, even though they have been sitting around ALL EVENING watching Riverdale and Snapchatting with every single friend they have who they just saw three hours ago at school?!?

So that night, I stomped out of my bed and started bellowing about “being considerate” and “managing your time,” and went by the door to the basement where the washer is and I realized – that the washing machine WAS NOT ON.  I was unfairly subjecting my family to a late-night mom-rant because my bloated ear organ was playing tricks on me again. “Ha, ha!”  my inner ear said. “Let’s send Heather the one sound that makes her want to bury herself alive!”

But I am getting excited about the day that I finally get to turn on my implant – February 22nd.

Too excited actually, because as my audiologist has repeatedly told me that the outcome of CI surgery can be great, or it can super suck, or it can be anywhere in between.  No one wants to be in the super-suck category.  And even the in-between one smacks of mediocrity and loser-ness and wallowing in the middle.  All of us implantees fantasize that we will be like that smug guy at the CI mentoring group who prances around claiming, “I could hear perfectly the second they turned on my device!”

In all likelihood, that will not be me.  Though I still want it to be.  Though I know I am not “managing my expectations’’.  Though I (secretly) know I will be one of the lucky ones.  Ag.

Cross your fingers HARD for me. I have already practically twisted mine off.

Heather’s Cochlear Implant Journey: Log 2.5.2018

This is me on the way home from the hospital with my fetching mummy-inspired up-do and my post-anesthesia zombie gaze. Hubby said it was a particularly good look.

I have been thinking of you guys during my surgery recovery and thought you might want to learn about the Top 4 Things Your Doctor Won’t Tell You About CI Surgery!

1) You must burp like an inebriated football fan.

Seriously.  No more delicate little stifled burps.  If you try to be polite, your ear will KILL you!  The only way to deal with a burp without feeling like your head will explode is to let ‘er rip with your mouth wide open.  The mom in me was cringing heavily! What kind of example am I setting for my kids?!? But I got over that fast and ditched my sense of decorum because I am a wuss pain-wise.

2) The nurses are in on the joke.

I am not kidding, every single nurse who talked to me before and after my surgery had an impossible to lip-read heavy accent.  I felt like all the doctors and nurses were in a back room giggling, “Hee, hee hee! Let’s make all our CI patients really want this surgery by making it impossible for them to understand anyone in the hospital!”  And then they were rolling around laughing and secretly filming me on their phones as I turned to my husband and shrieked, “I can’t get this surgery soon enough!!”

3) A pathway to schizophrenia.

Doctor Luxford warned that I might have some post-operative ringing in my ears.  And the truth is, I did have some ringing – if you call the noise you hear while standing on the launch pad during blast off at Cape Canaveral “ringing.” And, get this, that loud noise was inside my head and no one else could hear it.  So when I startled every time the roaring began, my kids thought it was hilarious. I mean, not only was Mom burping like a frat boy, now she was randomly ducking and covering her head like that homeless guy on Raymond Avenue. Ha ha! Mom is nuts!

4) Make no social plans.

When they told me I would not be able to wash my hair for 3 days, I figured no big deal.  Right? So it will be a little wonky, but I can tease it up and make it look okay.  But when I took off my massive head bandage, there was all this goop in my hair around the surgical site. It was super stiff and made my hair stick straight out.  I looked like a lopsided porcupine.  So if lopsided-porcupine is your go-to date-night look, then by all means make plans to go out after surgery.  Me, I hid in my room eating a bag of NutterButters and binge-watched Black Mirror.  But that’s just me.

Heather’s Cochlear Implant Journey: Log 2.1.2018

This is me getting ready for a surgery that I actually want! Yay!

Over the past 9 months I have had 16 surgeries on my legs to repair the after-effect of a car plowing into me as I stood at an ATM machine.  My legs are now a jumble of scars and cadaver parts and transplanted tissue. And my career as an underwear model has been cut tragically short.

But now, I am actually choosing to have someone come at me with a knife!  Not just a knife, a buzz saw! Like the kind you can get at Home Depot. Only sterile (I hope).  You know, the kind with the little wheel that wizzes around and at my house, my daughters use it to shred their jeans so they look expensive, when actually, they are the cheap, Old Navy, non-shredded kind. I buy them jeans that actually cover their skin, but that is just not good enough.  Because jeans that look like they’ve come out of a dumpster are amaze-balls.

So Dr. Luxford at House Ear Clinic is going to take this buzz saw and cut a hole in my skull and jam this long electrode deep into my cochlea and hopefully, in a couple of months, I might actually be able to understand what my family says at the dinner table.  Though they claim that I really (really, really, really), don’t want to know what they say.  Apparently, the dinner conversation in my family revolves around conversations about cat memes and fart jokes. But that’s news to me.

Since I have had so many surgeries, I am not afraid of the OR.  Or of the pain for that matter since there is NO WAY this will hurt more than being pinned against an ATM machine with a car. But I am worried about my expectations.

I so desperately want to be able to hear my family better (despite the fart joke thing).  I also want to be able to participate at parties instead of just smiling and nodding my head and laughing when everyone else does so I come off like some vapid, dumb blonde. (Really! I am not vapid.  Insipid, maybe.  But not vapid.)  And I want to be able to talk on the phone.  The guy at Tony’s Pizza is so sick of having to scream at the top of his lungs at me that he won’t even pick up when I call.  He just sends over an extra large Meat-o-Rama, and I eat it even though I meant to get a vegetarian and only eat half a slice along with my glass of kale juice.

Is that too much to ask, or to hope for?

Or course it is, because I always do that.  Ask too much. And now I must ask too much of all of you.  I really do need you guys to stand by me through this. (Actually, you will be standing and I will be sitting in my wheelchair which is kind of awkward – but you get the picture.)  I am truly grateful for this kind and compassionate and generous community. And that really is amaze-balls.

What to do About Ear Snot

Come on, you know you have it! That gooey stuff that messes with your hearing aid and cochlear implant ear molds. I mean, what is it really? Ear wax? Sweat? Skin oil? All of the above in some kind of horrifying mixture?

I’m sorry to be so gross, but this stuff often gets in the way of my better hearing, and I’m betting yours as well. It makes my ear molds slithery and uncomfortable. The inside of my ears gets red and feels inflamed. Sometimes, it even creates a suction that makes my hearing sound like I’m sitting at the bottom of a barrel.

Of course, this usually happens right in the middle of an important business meeting and I’m forced to yank my mold out of my ear with a disgusting “schoop!” Then I frantically search for a tissue in my purse and apologize to my colleagues while they look at me with such revulsion that you’d think I had just drowned a bag full of kittens.

To make matters worse, little bits of tissue end up getting stuck all over my mold and the inside of my ear and I STILL CAN’T HEAR PROPERLY!

For years I have been fighting against this. I have tried everything – alcohol wipes in the morning, good old-fashioned soap, taking my hearing aids out at regular intervals to “rest” my ears (Who came up with this idea? Soooo stupid!), and finally, finally, finally I have found a solution.

I have this hippie sister that lives in Marin County and her whole life is organic and chakra aligned and bursting over with kale and quinoa. I usually ignore her. Despite my rudeness, however, she insists on being nice to me and is always sending me these hippie gifts. One of them was: Kiehl’s Blue Astringent Herbal Lotion. I’m not sure if you are familiar with Kiehl’s, but the tree-hugging products are ridiculously expensive and I typically shun things like that and buy whatever I can get at CVS for four dollars. But my sister sent me a bottle of this Blue Astringent Herbal Lotion at the exact time I was desperately trying to deal with an ear snot attack, so I swabbed my ears with the unnaturally blue liquid, put in my molds and left the house.

And guess what?!? No ear snot. All day. Totally ear snot free.

I have no idea why it works, and maybe it only works for me, but for some reason if I swab out my ears in the morning and at night with Kiehl’s Blue Astringent Herbal Lotion, my ear snot problem is solved. My ears don’t dry up and get raw and flakey either. I do realize that the bottle is expensive enough that you are going to have to call your broker if you want to buy it, but the last bottle I had lasted for a WHOLE YEAR. So in the end, it wasn’t that expensive and has saved me untold moments of mortification.

If you have another idea for a product that helps with ear snot, please share! The community will thank you.

Heather reviews her favorite technologies for your benefit and her narcissistic tendencies only. She does not accept financial compensation for her reviews/opinions.

The Love of a Loyal Hearing Dog

 

My Dog Marina

My Hearing Dog Marina

It’s scary to be deaf and have a baby. I was a new mother, living in a rented apartment with no deaf alert equipment (doorbell, phone ringer, fire alarm) and had a husband that worked out of town all week long (he came home on the weekends). I was terrified that I would miss my son crying and he would become so distraught that he would flail around and tangle himself up and choke to death and it would be ALL MY FAULT. Okay, so I am a mega over-worrier, but really, you can’t stare at the baby monitor all day long, waiting for that little red light to bleep. It just doesn’t work.

So what to do? Hire a nanny? Buy a million dollars worth of equipment? Best answer: get a hearing dog.

A hearing dog is a dog that is trained to alert you to sounds. For example, if the doorbell rings, the dog will come and nudge you on the leg, then run to the door, then back to you, then back to the door – until you get up off your lazy butt and go answer the door. They do this wild zipping around thing with any kind of noise you need to know about: the phone, the crying baby, the smoke alarm, the kitchen timer.

Marina was my hearing dog, and she was the greatest animal in the history of the planet. Not only was she super cute and sweet and her tail would pump like a piston every time she saw me, she helped me in so, so many ways. I was in a brand new city with a brand new baby and had a husband that was gone a lot. I was lonely and freaked out about being able to cope with my disability and so, so tired all the time. And then Marina came and made it all better.

First of all, she alleviated a lot of my stress and worry. I had challenges, yes, but I had a full-time helper now.

And then came the surprise benefit: as I walked around my new neighborhood with Marina in her bright orange “Hearing Dog” vest, people would come right up to me to talk. I met so many new people this way.

The Top 5 Questions People Would Ask Me

About My Hearing Dog

  • 1. Is that a blind dog in training? (and I’m thinking, you’re the one who is blind since the vest says “Hearing Dog” in great big black letters)
  • 2. Is your dog deaf?
  • 3. Can’t all dogs hear?
  • 4. You don’t look deaf.
  • 5. Does the dog bark to get your attention? 

I also got to meet the amazingly talented and super kind people at the San Francisco Hearing Dog Program. About six months after the program accepted my application, I went up there to go through a week of hearing dog handling training.

Hearing dogs and handlers

With Fellow Trainees and our New Hearing Dogs

It was a terrific experience and I will always be grateful to the trainers and to the many generous donors who support the program.

If you are thinking that maybe a hearing dog might be right for you, here are things to consider:

1. A hearing dog will not work if there is regular, lazy dog in the house.  I mean, would you?  If there is another dog napping and lolling around, the hearing dog is going to say, “Hey!  He’s napping (chewing the couch, licking his butt)!  I want to nap (chew the couch, lick my butt), too!” So a hearing dog will not be placed with a family that already has a dog.

2. The dog is still a dog and needs your time and attention.  Just because she is working doesn’t mean she doesn’t need walks and play time and a slobbery tennis ball that she will drop into your lap at the exact moment when you have changed into your expensive and hard-to-clean work clothes.

3. The dog needs food and medical care (and in Marina’s case, a steady supply of squeaky toys) that do not come cheap.  Also, while you do not have to pay for a hearing dog, you must travel to the training site and stay there in a hotel for one to two weeks to learn how to become a handler. This was also not cheap.  So make sure you can make the financial commitment. 

Do you already have a hearing dog? Please post a picture of you and your dog (or just your dog if you are having a bad hair day) to the “Hearing Dog Pics” page at the top of this blog.

 

The Guardians of the Galaxy Bully the Disabled

As a comic book-loving SciFi super geek I was so psyched to go see The Guardians of the Galaxy with my kids. We went to the fabulous Edwards Alhambra Renaissance Theatre and got our massive “tub ‘o corn” to share, our “bladder buster” sodas and my super fashionable captioning glasses (they make you look dreamy and not dork-like at all, right?) and settled into our seats. Mayhem ensued, jokes were bantered, sex appeal slithered across the screen and then — BAM! For me the whole thing came to a grinding halt.

There was a scene, and I am not making this up, where the heroes buy a prosthetic leg from someone WHO IS STILL USING IT and then admit that they really didn’t need the leg, that they just thought it would be funny to make the man hop around. Then they laugh like crazy. Around me, in the packed movie theatre, the audience, too, was laughing like crazy. Like it is so very funny to make a crippled man hop. Or push someone out of a wheelchair. Or mess with an old lady’s hearing aid. Really?! This is funny?! Really?!

I know what you are saying. You are saying, “Heather get over it. It happens every day.” And you’re right. Every single day someone makes a joke about disabled people — many times, right to my face. Just yesterday, I was trying to explain to a school administrator that I cannot use voice on my cell phone. When I said, “Please text me because I am deaf and cannot hear my cell,” she started laughing. And when I said, “No, really. I am deaf,” her face fell and she apologized like 50 million times.

But why was that funny? If she were me, she would understand that it is not funny at all.

And yes, I do realize I am the absolute WORST about this. This entire blog is me cracking jokes about the crap we go through every day. But there’s a difference. I’m the deaf chick making light of our difficulties. Not someone else looking at us and laughing because we look/sound/act ridiculous according to them.

Anyway, I think it’s time that we in the deaf/hard of hearing community start to call people on this. We need to, very politely, tell people it’s not okay to ridicule the disabled. Think it will sink in?