You know, one of the reasons my posts slowed down here was because things just became … normal. I woke up every day, put on my CI processors, heard my world in a way that felt normal to me, and that was about it. Once you get past the early days where every new sound is a revelation and it’s just so freaking cool to HEAR again, there’s not much to say. And, um, you kind of start to take things for granted.
This past Saturday I expected to be like any other day. I put on my right processor … beep, I can hear, good to go. (Actually, with the new processors I can switch them up and it doesn’t matter which ear they go on – another really helpful improvement.) Put on the left, start applying my moisturizer, finish my moisturizer and hey, I can’t hear. WTF?! I took off the processor, pulled the battery off and put it back on, and watched the LED lights to see what happened. Usually I’ll see four flashes to indicate a full battery, and then a quick green light. This time I saw nothing for a long time, and then a solid red light that didn’t go away. Fuck.
I still wasn’t too nervous; I figured maybe somehow my battery didn’t recharge overnight. So I tried all the others, with the same result.
It’s funny how entitled I feel now – how dare I not be able to hear?! This is ridiculous and awful! And then I remember that it was my reality (only worse, because I couldn’t hear AT ALL) for so many months when I first went deaf.
Dave was still sleeping so I began quietly opening dresser drawers, trying to remember where I put my old Harmony processors, batteries and battery charger. I never expected to be using my backup processor so quickly but at least I had it. Since my left ear is much stronger, I put the new Naida CI on that ear and put the Harmony on my right. (Which meant I had to figure out which processor went on that ear; with the Harmony, if you put the wrong processor on the wrong ear, it will not work at all.)
I came downstairs to use the computer and see if other people had experienced a similar issue and if it was, indeed, a fault in the processor. It wasn’t too bad, really – I could tell that I was hearing differently on the right side but it wasn’t really jarring. But the house was silent, and once Dave woke up and came downstairs, it really hit home how differently I hear with the Naida Q90 versus the Harmony.
My right ear is weird – I have electrodes turned off on that ear, and high pitched sounds make me really dizzy. With the Harmony I was always turning the volume down or covering the microphone if there were sudden loud noises. It wasn’t until Saturday morning that I realized I hadn’t had to do that once with the Naida.
Dave pulled out dishes to feed the cats, filled the metal vacuum pot and put it on the stove to heat for coffee, coughed and cleared his throat … and I immediately had to pull the Harmony CI off my ear, look at the volume wheel and turn it down. All of those high-pitched sounds were unbearably sharp to me, almost painfully so.
As I went about my morning, I remembered that my headpiece cable for the Harmony was frayed, which meant sound was cutting out every time I turned my head or smiled. So I’d smile, suddenly hear nothing, after a second there’d be a loud WHOOSH of sound (because remember, the Harmony doesn’t activate ClearVoice right away), and finally the sound would moderate to a comfortable level … then I’d turn my head and the whole thing would repeat. It was maddening.
I thought hey, maybe I can wear the new headpiece with my old Harmony! I went upstairs to check, but the connections aren’t compatible. Then I remembered I’d received some old equipment from a fellow who had upgraded quite a while back, and there’d been a headpiece cable included. I never even opened it because my headpiece and cable for the Harmony is a one-piece unit. But I figured I’d check and YES, this cable worked with my Harmony! So I do have one functional unit using that cable and the new magnet headpiece that I wear with my Naida.
My email to Advanced Bionics was in vain because it was the weekend, but I did hear back on Monday afternoon. I have to admit I’ve noticed a difference in the Customer Service response compared to my early days of wearing a CI. The customer service reps often seem confused and not as knowledgeable as they used to be. The person who helped me asked for some information, which I provided, and then said she entered a processor replacement request, gave me an RMA number and referenced my old audiologist in Illinois, even though I’d just given her my new Michigan audiologist information. That really gave me pause. I corrected her, but come on, really?! This is pretty important stuff here!
I’m supposed to have a new processor in two business days but I’ve heard nothing since – no tracking information, etc. I don’t know if my processor will arrive already programmed or if I have to take it in to have the programming put on. (I know I could ask but eh, I figure I’ll know soon enough once it gets here.) In the meantime, I’m realizing how much I’d already gotten used to my new hearing. I can’t really use the ComPilot – it only works in one ear (the Naida) and everything sounds really uneven, so I prefer just to do without for now. I’m back to wearing headphones and using an MP3 player at the gym.
And I know, boo hoo, poor me — “You want some cheese with your whine?” I am still a deaf person who can hear! Totally not complaining. But I can’t help but compare and realize how much I really did take my bionic hearing for granted, especially with the improvements since I upgraded. I guess it made more of a difference than I realized!
I haven’t posted in forever so I’m sure nobody’s reading this anymore, but for the first time in ages I actually have cochlear implant-related news. In April 2018 it will be ten years since I went deaf (and ten years since I started this blog, geez). I can remember getting my cochlear implants and thinking they were all I ever needed – I couldn’t imagine needing to upgrade. But ten years on, and I’m down to one headpiece that functions well, one that is okay for the most part, one that doesn’t work at all and one that cuts out every time I smile, turn my head, etc. (the cord is frayed and loses connection). I think the only functioning T-mics I have are the ones on my two processors; the backups long since stopped working. And I received a letter from Advanced Bionics this spring telling me that my Harmony processors are now obsolete and no longer covered. When I called last year to get a replacement headpiece, I was told they don’t make that style anymore and I should really upgrade.
“Oh, I’ll wait until we move,” I said. “I want to see how our finances look at that point.” I had no idea how expensive it would be to upgrade, and it made me nervous. A house was more important to me than hearing at that point.
So now we have a house. (Yes! We bought a house in June, in Michigan. I really need to start writing here again.) My headpieces really started acting up, so I contacted Advanced Bionics with my long list of questions. And I’m shocked to say that less than a month later, I’ve been notified that my insurance approved the upgrade, they are accepting my two backup processors as a trade-in to cover the 20% balance I owed (which leaves a big fat ZERO due) and my new processors are being shipped to me today!
I also had to find a new clinic since I haven’t been mapped since I lived in Illinois, so I’ll be going to Western Michigan University to have these babies activated and mapped. I can’t even tell you all the new features I’ll have – I’m getting the Advanced Bionics Naida Q90 in ruby red – so I have some learnin’ to do.
But I’m pretty sure I can listen to music wirelessly with the ComPilot (which I’ll wear around my neck) and Bluetooth technology. I used to have to hook all these wires up to have the music go right into my CIs, so I’m really excited about this!
What a difference (almost) ten years makes. I’m still reeling.
I went to a new dentist last week, for my regular cleaning and updated x-rays. I’ve never been fond of the dentist to begin with, but since I got CIs it is extra challenging because being reclined makes my CI processors (aka my “ears”) fall off.
I’ve tried many things over the years — wig tape, headbands, scarves, even a knit cap. Nothing is foolproof (although the knit cap worked the best, since it also helps to keep my magnets where they need to be). However, I am not about to pull out a knit cap in August.
This time around I used something called a Snuggie from Advanced Bionics, basically tubing made to fit my Harmony processors that fits snugly around my ear. It works perfectly to keep the processor from being pulled off my ear as my head is reclined back. The only issue that remained was keeping the magnets from being knocked out of place by the headrest.
I played around with a scarf tied strategically over both magnets, but eventually decided it was too fussy. I figured I’d just deal with the magnet situation if and when it arose.
In the end I didn’t have too much trouble; they were able to adjust the headrest so that my magnets stayed in place during most of my visit. They did slip off when I was told to turn my head to the side, but those instances were brief and my other magnet stayed in place so I had enough hearing to still follow instructions.
What really impressed me, though, was when the dentist came in for the exam portion. She had a bit of an accent, and originally asked me a question when her back was turned (she also had a mask over her mouth, just for an added challenge). I had no idea if she was talking to the dental hygienist or me, so I stayed silent. She turned back to me, and I met her eyes and said, “I can hear you, but I also read lips to understand what you’re saying.”
Her face lit up and she pulled the mask down. “Thank you for telling me! That’s very good to know.” Then she turned to the hygienist and asked her to repeat everything for me — although the dentist kept her mask on, everything she said was repeated by the hygienist so I could read the hygienist’s lips. I’ve never had anyone in the medical profession do that for me before and it made a huge difference.
Not only did I get a clean bill of dental health, I came away feeling like my needs were met with respect, kindness and ingenuity. It almost makes me not dread going to the dentist again!
I’ve had my cochlear implants for … wow, almost eight years now (in August of 2016). In the beginning, there are all kinds of, as we call them, “CI moments” – things we’ve never heard before, or sounds finally becoming clear, or whatever. After nearly eight years, though, you figure you’ve heard all the new things or had all the new hearing experiences you’re going to have.
So this morning I had a song stuck in my head, I’ll Be by Edwin McCain. It’s pretty popular now but when I first heard it in 1997 he was a fairly unknown artist and I didn’t know what to expect when I listened to the CD. I can still remember how it sounded, and how much I loved the song; I listened to it over and over, and knew all the nuances of his voice and the music.
Since I got my CIs, I don’t really listen to music much. When I was first activated, music sounded, well, godawful would be a kind way to put it. It just sounded like crashing noise. It got better every time I went for a mapping (where they hook you up to a computer and tweak the computer programs in the CIs) and eventually there came a time that I listened to a song (by Depeche Mode) and heard it the way I remembered it. I actually heard it better than I remembered it, because I was hearing parts of the song (various instruments) in each ear. I had never heard music in stereo before, because my right ear was always pretty bad – moderate to severe hearing loss until 1993, and then profound (i.e., I heard nothing) from 1993 on. I actually started crying the first time music sounded good through my CIs.
Anyway, Dave and I have different tastes in music and I never got into the habit of wearing headphones; it was just easier not to listen to music most of the time. Every now and then, though, I go through a phase and listen to a song or a whole CD. I am not into new music as much; partly it’s because I’m apparently an old fogey who likes ‘golden oldies’ (anything from the 70s to about 1998) and partly it’s because my memory kicks in on a song I already know and helps me shape what the song should sound like.
I dug around and found my Edwin McCain CD and decided to teach myself how to copy it to my computer. (Yes, this is the something I had to teach myself. In 2016. Leave me alone.) I clicked on I’ll Be, popped on the headphones, and … hmmm. This is not how I remember it sounding. I was pretty disappointed. Yes, he has a raspy voice but it really sounded like he was growling, not the pretty, earnest song I remember. I kept the headphones on while the files were transferring, assuming it would go to the next song when it ended. I got preoccupied and didn’t realize that the song had started over. But I did notice that now it sounded better, a buttery, smooth rich sound closer to how I remember the song. ‘Huh,’ I thought, ‘I guess he sang the end of the song differently than the beginning.’ Then I put my cursor on the progress bar and saw that it was, like, one minute into the song. He wasn’t singing it better; I was hearing it a second time and my brain was already processing the sounds better. I listened to it a third time and there it was: the song I remembered.
Seriously folks, the brain is an amazing thing. Never take it for granted.
On our way home from Dave’s one-month checkup with his hepatologist in Fort Wayne, we stopped at Subway for lunch. Although we like the food, Dave kind of hates going there because the ordering process confounds him. They ask a lot of questions, and for someone with hearing loss that’s a real drag.
I have an easier time with this kind of thing (as long as it’s in person) because I lipread, so I am usually the one to order. I just consult Dave first to make sure what he wants, or if he starts to order himself then I will relay the questions to him if he misses them.
Since it was just a light lunch, we did our usual and got the same sandwich in the foot-long size, and then split it. This location had a drive-through but we decided to go inside because I really struggle to understand anything through those speakers.
We were the only customers, and as we walked up to the counter the guy started talking. I wasn’t close enough to read his lips and had no clue what he said (he was talking really fast and also had a bit of a southern accent). I did my usual and just assumed what he probably said based on my past visits to Subway.
I told him the type of sandwich we wanted and the type of bread. He said something else that I missed, but I knew they usually asked about cheese and I thought I’d caught part of his question. “Did you say something about pepperjack cheese?” He nodded, and I confirmed that we wanted it. Then he asked if we wanted it toasted, which caught me off guard. I had to have him repeat the question a couple of times. After I answered him, I added, “I’m deaf and I’m reading your lips, so that’s why I sometimes miss what you say.”
Now, usually I add that I have cochlear implants and I hear with them; that way people know that I do hear sound but they also know that I’m reading their lips as well. But I figured eh, this is just a quick lunch order and why go into all that detail? Here’s what happened when I just let that statement hang in the air without further clarification:
The guy stopped talking.
He had been keeping up a constant patter while we were there, which was making it hard for me to tell if he was asking a question, making a comment about our order, or even perhaps just talking to himself. My statement silenced him, and what a gift it was!
He quietly made the sandwich and just kind of looked up when he got to the veggies, waving his hand vaguely in the direction of the options available. I smiled and said we just wanted tomato, nothing else, and no sauce.
Obviously he thought I couldn’t hear anything and there was no point in really talking to me anymore, so he resorted to his version of sign language – and it was perfectly fine with me (even preferable, if I’m being honest). I thought it was kind of hilarious; it’s been a long time since I’ve had someone react that way when I say I’m deaf. Even before I got my CIs and I really couldn’t hear, when I told someone I was deaf and reading lips, they would still keep talking to me the same way they had been.
(Before I get to my next story, I have to interject and say that Dave had his viral load tested at this appointment, and we got the results yesterday. As of one month into his three month treatment with Harvoni and Ribavirin, he has cleared the Hepatitis C virus! He never cleared it in 2013; he went from over 4 million to 11,000 but that was as low as it went. This time he started at over 3 million and BOOM … now it’s undetected. ! ! ! !)
The other hearing loss-related thing that happened around here was during a power outage. The power really doesn’t go out very often here, and when it does they get it back on within a few hours (at the most). It seems to go out at weird times, though, not during storms. The last time was about a week ago, after we’d had some rain come through. During the storms all was well, but about 3:15 in the morning my eyes just kind of flew open. I could feel that something wasn’t right; I just didn’t know what it was. I realized Dave wasn’t in bed, and then I looked over at the clock and saw that it was off – we had a power outage. (Dave had realized about five minutes before me and was getting candles.)
It wasn’t hot so we didn’t have fans on (or else the room suddenly getting hot would have woken me up). I realized that when I’m sleeping I’m more sensitive to light (and the lack of it) than I realized. I always assumed I wouldn’t wake up from a strobe light on a smoke detector, and that I’d need something that vibrated the bed to wake me up. (Those systems are, by the way, very expensive.) Now I’m kind of wondering if the strobe light would actually do the trick. I must be more sensitive to that kind of thing when I’m sleeping since I don’t have hearing to rely on. Very interesting!
I just realized I left out an anecdote when I finished up Hazel’s repair story. (I was in the midst of the aforementioned cold at the time, and I was kind of powering through the story rather than the usual meandering way that I write. I don’t know if that’s a good thing or a bad thing.)
So anyway, I had mentioned that because we couldn’t get Hazel started, and we don’t have a second car, we had to have the car rental people pick us up at the house and give us a ride to the actual rental facility. We’d never done this before and weren’t sure how it worked. I thought maybe they would arrive with the actual car we were renting. We were debating the logistics of this when a car pulled up in front of our house and we heard the horn honk.
Dave reached the car first and got into the back seat. I was about to slide in next to him when the girl who was driving, we’ll call her Tina, told me that I was welcome to sit in the front seat. Back in the days before my cochlear implants, this would have made me extremely nervous. Sitting in the front seat means you are obligated to make conversation, whereas the person in the back seat can kind of sit back and zone out without looking rude.
Well, I didn’t want this nice girl to think I thought she had cooties or something, so I didn’t hesitate to sit in the front seat.
She was very friendly and talkative; this would not be a trip made in awkward silence. The first thing she told us was that this was not the car we’d be renting, and I laughed and admitted we’d just been wondering about that when she pulled up. Then I started telling her about our saga with Hazel, explaining why we needed a ride to the rental place (and thanking her profusely as well).
It was about a 25 minute ride to the facility because we’d had some snow and the roads weren’t completely plowed. I chatted easily with this girl for the entire ride, something that would have been agonizingly difficult for me when I just had hearing aids. I didn’t hesitate to ask her questions and make comments when she told us stories about her family. In the past I would have kept quiet in an effort to keep conversation to a minimum (less worry about not hearing something properly that way).
At one point she asked Dave something that he didn’t catch (sitting in the back seat makes it especially hard because you can’t lip read). So I turned around and repeated it for him, making sure he could see and hear me. Then he explained to Tina that we both had hearing loss – that I was totally deaf and heard with cochlear implants, and he was partially deaf and had a hearing aid for the ear that could still hear. She’d never heard of CIs so we explained how they worked, and basically we blew her mind. It was fun to see her expression change as we spoke, to see her amazement at the technology that makes it possible for me to hear.
When it was time for us to return the car a week later, Tina was working at the counter. We handed over the keys and gave her an update on our car. Then I asked her if she knew the location of the Michael’s store – we knew there was one nearby, we just weren’t exactly sure where it was. (We wanted to stop in and look at their Christmas trees.) She laughed and said, “Wow, God works in mysterious ways!” I gave her a quizzical look, and she went on to explain that she was just going through a bunch of Michael’s coupons that she was going to throw away because they expired in one day. Then she handed us two coupons for 50% off, and explained exactly where the store was (not far from where we already were). How crazy is that?!
I mention that because before my CIs, I would never have asked that question. I would look the information up on my cell phone or something, but I would never take a chance and ask another person where something was because I could never be sure I’d hear or understand the answer. Having the confidence to ask that question opened up a whole conversation about a craft Tina was working on, and also the aforementioned coupons she was nice enough to offer.
I’ve mentioned before that I have trouble with the phone, TV and movies unless I have captions. But there is a night and day difference in the most important thing to me, face to face conversations with people. As long as the person doesn’t have a heavy accent, I almost never miss a word.
As we walked back to Hazel that day, I remarked to Dave that I felt like I could talk to anyone now that I could hear so well. Of course, Tina was especially easy to talk to because she was so friendly and outgoing. But I had no problem keeping a constant flow of conversation going, and I never once worried about what I would say next or if I would be able to understand what she was saying.
It was such a good feeling, and so fun to connect with another person in a way that I never would have before my CIs.
If you’re like me and you like to read books that touch on hearing loss, then I’ve got a book to recommend to you. If you enjoy books that touch on scientific subjects in layman’s terms, then I’ve really got a book to recommend to you.
It’s called I Can Hear You Whisper: An Intimate Journey through the Science of Sound and Language, and it’s written by Lydia Denworth, a former Newsweek reporter and mom to three young boys – one of whom has a hearing loss and wears a cochlear implant.
The book was described as “an investigation into the science of hearing, child language acquisition, neuroplasticity, brain development, and Deaf culture.” I wasn’t sure if it was going to go over my head, but it sounded really interesting. I was happy to discover that it was written in a way that made all the scientific information easy to understand for someone like me, who never took more than Intro to Physical Science in 9th grade.
The author deftly weaves her personal experience into the story, describing what it was like to discover her son’s hearing loss and the process she went through as she tried to understand how it was going to impact his ability to acquire language, both spoken and written. If you have a child with a hearing loss, this would really be a valuable resource.
I learned SO MUCH by reading this book, things I never knew about cochlear implants (and I thought I knew a lot) and how they were developed. There are chapters on how we process speech, how we learn to read, the plasticity of the brain (which is so cool, and is one of the reasons I hear sounds with my cochlear implant now instead of the weird beeps and warbles I heard when it was first activated). She touches on Deaf culture, sign language, oral versus ASL – and all of these subjects, which can be so very touchy, are discussed in a calm, thoughtful way, with both sides presented fairly.
I was curious to see if the cochlear implant brand wars would be mentioned, or if she would show a bias toward the company who made her son’s implant (which is not the company that made mine). I was very happy to see that this did not come up at all. The book just presented the CI facts in a general way: How they were developed, the testing involved, what early CIs were like (my goodness!), the challenges of hearing in a noisy environment for CI users, listening to music, etc.
Some of her descriptions of her son Alex’s early testing brought back unexpected, vague memories for me of my own testing as a young child. When Alex suddenly lost all of his hearing and he told his mom, through cries and screams, “I can’t talk!” (because he can no longer hear himself talk) my heart went out to them both. That is still the most startling thing for me, not being able to hear myself talk when my CIs are off.
I thought it was awesome that they found a tutor to come in and teach some ASL to the family; when I went deaf, that was one thing I really wished we could have done. As she illustrates in the book, it’s not very easy to teach everyone ASL at once, especially young children. I admire their efforts, though, to bring sign language into Alex’s life as a complement to his CI.
I could have kept reading this book for days and days; I was sad when it ended. It gets five out of five big stars from me – look for it (e-book and hardcover versions) a month from today, April 17.
(I received this book from the publisher for the purposes of an honest review; my views are my own.)