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?

Wanna Look Ten Years Younger, Boomers? Get a Hearing Aid!

 

As a profoundly hard-of-hearing person, I am hyper aware of lips. And eyebrows and weird face grimaces, and any kind of body language that will give me a clue as to what people are saying. I am a lipreader, which also means I am a facereader and a bodyreader. Just don’t ever try to lie to me – my lip/face/body reading super powers will help me sniff you out in an instant.           

 So I am watching you, Boomers, and you are making yourselves look older than you are. I see the rounded shoulders you get while leaning waaaay into people’s personal space because you can’t hear their voices over the background noise. I am noticing the Grand Canyon-sized divot between your eyes that says, “I am straining to hear you.”   And I am trying to ignore the glassy-eyed vacant stare that you get when you can’t follow a conversation at a party.

A Generational State of Denial

But even while these tell-tale signs are flashing their warnings, when I ask my Boomer friends (for the record, I am a Gen Xer) “Are you having trouble hearing?” they always (and I mean ALWAYS) give me one of these three answers:

  1. Oh, my hearing is great. I just can’t hear in a noisy party.
  2. Not at all. But my kids drive me crazy because they are always mumbling!
  3. I can’t understand anyone on my cell. The damn thing’s broken. 

I’m sorry, Boomers. If you are having trouble hearing in a noisy environment and it sounds like everyone is always mumbling and your cell drives you nuts – you have a hearing problem! And you are not alone. According to the National Research Council, 1 in every 3 people over 55 has hearing loss, and that number jumps to 2 in 3 when you are over 70. The good news is that age-related hearing loss can easily be managed. I will explain what you can do in a little bit. But first, an explanation of why you might not think you are hard-of-hearing, even though you are.

Creeps Up On You Bit By Bit

In most age-related hearing loss, the first things go are the high frequencies, which means that while you can hear vowels perfectly, you don’t hear consonants very well. Once you start losing your high frequencies, the volume of the noise around you is exactly the same as it always was. So you still hear your phone ring and the traffic noise and Fleetwood Mac wailing on your iPod. In most ways, you are “hearing” just as well as you were. BUT – now you are missing key little pieces of the puzzle. 

For example, if I say, “The file is by the coffee machine,” to someone with a high frequency loss, it might sound like, “The file is by the copy machine.” The high frequency consonants are the bits that truly tell us what others are saying. Without them, everyone sounds mushy.

So what can you do about this? How can you tweak your hearing just a little bit to make it clearer, sharper? You are absolutely going to hate what I have to tell you, but here goes – get a hearing aid! 

Through long experience, I know that you have just cocked your head and you are gearing up to screech one of these three things at me: 

  1. I can’t get a hearing aid. It will make me look old!
  2. I don’t want everything to be super loud. A hearing aid can’t help me.
  3. I can’t afford it. My insurance doesn’t cover it.

Hearing Aids Don’t Equal One Foot in the Grave

First of all – lets address the “geezer factor.” Hearing aids now are not what they used to be. They are no longer these horrid beige things the size of an SUV with ear molds that look like someone shoved a wad of gum in your ear. There are hearing aids now that are small enough to fit INSIDE your ear canal. No one can see them even if you have a buzz cut (and please, Boomers, do not think you can make that look a thing again).         

 And hearing aids today are digital – even those tiny things that fit in your ear canal have more computing power than the system that was on the Apollo spacecraft. Only the sounds you have trouble hearing will be amplified, while the others will be left alone. It takes a little bit of tweaking and programming to get it right, but the result is suddenly clearer sound. You will no longer have to feel out-of-it at parties. You won’t have to crank the volume on your TV any more. And everyone at work will stop thinking that you’re not paying attention.

 And finally – the cash factor. This is the hardest for most of us because hardly any insurance plans cover the cost. Because of the severity of my loss, I have eight thousand dollars worth of hardware in my ears right now, and it is truly painful every time I need to upgrade. But there are a number of foundations that can help you get free or reduced-cost aids. If you have a Medical Flexible Spending Plan at work, hearing aids qualify. And don’t forget that hearing aids in some cases are tax deductable (please ask your tax preparer about this one). Also, if all of you Boomers who need hearing aids (statistically, only 1 in 7 people who needs a hearing aid actually gets one), would just march down to the audiologist tomorrow, the sudden shift in demand would bring the price of hearing aids waaaaaay down.

So what are you waiting for?! I truly hope that those of you who need it will go out there and get a hearing aid. You’ll be so happy you did.