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’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.
I like to do this thing where I think ‘At this time last year, I was …’. It’s kind of amazing to look back and see how much things change in a year or five years or whatever. Dave and I were talking about this today because seven years ago at this very moment, I was in the recovery room at the hospital. This day marks seven years since my bilateral cochlear implant surgery.
Seven years ago, Eric was just about to enter college and Paige was just about to enter high school. How weird is that?
Dave reminded me that August 21, the day after I was activated, was the day we moved Eric into his dorm. I remember that like it was yesterday; I could hear sounds, but everything was weirdly robotic and voices were still very strange-sounding, especially the voices of Eric’s roommate and his family. I remember listening to the rhythmic sound of the car tires on the expressway until the sound made sense to me; same with the sound of the turn signal clicking.
So much has changed in seven years. I didn’t know back then whether the surgery would even work, and I wouldn’t hear sound again for another month. (Activation was a month after surgery, after I was mostly healed.)
The processors I wear (Advanced Bionics Harmony) are old news now, even though they were the latest and greatest when I got them. Since then they’ve introduced the Neptune (an off-the-ear, waterproof processor) and the Naida. I still follow the boards on Hearing Journey and offer support/mentoring to people who are curious about getting a CI, but I really can’t offer hands-on experience with the newest technology … and that’s a strange feeling. I might look into upgrading once we move and I know what our financial situation is going to be, but right now every spare penny gets saved for our future home. My Harmony processors are working fine for now (the rechargeable batteries are getting a little worse for wear though; I might need to buy some new ones).
I haven’t really been writing here that much lately. It’s not like anything bad is happening; summer is here and things are going along just fine. A couple of times I started to write a blog post and then got a sense of déjà vu, like I’ve written about the subject before. A quick search then shows me that yep, I wrote about that exact subject two years ago or whatever. I’ve gone through these periods before and I’m sure it’s just temporary. For now I’ll try to pop in and say hey even when there’s not much to say … and eventually I’ll be writing like crazy again.
So here’s to the next seven years – hopefully by then I’ll look back on this post and think ‘Wow, I was still using Harmony processors back then!’
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!
It’s been about two years since I first posted this, and I thought I’d re-post for those who haven’t seen it before:
I realized the other day that there’s a lot of things about having cochlear implants that I assume everyone just knows. When I first started this blog, I think my main ‘audience’ was other people with cochlear implants or who were considering one. As the years go by that’s no longer the case, and there are certain questions that I frequently get asked, so I figured I’d write a little bit about being bionic.
Just as a quick refresher, for anyone who doesn’t already know, I am profoundly deaf. I lost my hearing three separate times during my life, for reasons nobody has ever been able to figure out. So I didn’t grow up deaf (I wore hearing aids). When I lost my hearing the third time, in April 2008, it left me with no usable hearing – I don’t respond to anything on hearing tests, and there is nothing that I hear, even with hearing aids.
I received a cochlear implant in each ear in July 2008. Instead of thousands of little hairs in my cochlea waving around and helping me to hear, I now have a teeny strip of 16 electrodes that do the job. The sound is interpreted by my brain after it’s routed through an internal micro-computer to the electrodes. The signal is transmitted via the headpiece/antenna connected to a processor (also containing a micro-computer) that I wear on my ear; it looks like a big hearing aid. There’s a magnet inside my head, and there’s one in the headpiece that is attached to my CI processor via a wire. The magnets are of opposite polarity. I put the magnet headpiece up to my head, feel around until I can feel the magnet pull, and let go. It clings to my head via the magnet in my skull. Here’s a couple pictures:
So that’s what I mean when I talk about “having CIs.”
I didn’t have brain surgery. I won’t get graphic (because I don’t know enough to!) but basically they make an incision behind your ear, along the curve, and then (for me, anyway) up and back a bit. They thread the electrodes into the cochlea and they shave/drill some of the skull to fit the magnet/radio antenna component, which is a couple of inches up and back from the ear. (I think this is slightly different for everyone, based on skull thickness.)
When I attach the magnet, it doesn’t hurt; I don’t feel anything at all. Once it connects, there’s a pause and then a woosh of sound as I begin to hear. (If the magnet is not attached, I don’t hear at all.) Now that I have a program called ClearVoice on my CIs, there’s another change as any loud, steady background noise (fans, etc.) gets suppressed.
If I run my fingers over my scalp, I can feel bumps – very, very slight on the right side and very, very noticeable on the left side. They did shave a bit of hair for the surgery, right behind my ear. Since my hair is long, it covered the shaved areas pretty well. For about 6 months after my surgery, I had my mom (a hair stylist) and my husband use clippers and keep the hair trimmed where the magnet connects. Your head stays swollen for quite a while and the less hair in that area, the better the magnet can connect.
I don’t wear my CIs in the shower and I don’t wear them to bed. I usually take them off if I’m going to nap, because the magnets get knocked off anyway when I lie back. I can get my CIs slightly damp (I don’t freak out too badly in the rain) but they aren’t waterproof like a newer offering from Advanced Bionics, the Neptune.
I find it really difficult to do anything that requires lying back if I have my CIs on. The weight of the processor pulls it off my ear and if the magnets bump into anything, they slide off. This makes going to the doctor and the dentist a bit of a challenge (especially the dentist), and makes things like yoga and sit ups fairly tricky unless I take my CIs off. I have a contraption that helps keep the processor on my ear so I can use that, but after a while it makes my ear ache…plus it’s really hard to put on!
Because I don’t sleep with my CIs on, it’s a catch-22. It’s very easy to sleep because I hear nothing at all, hence nothing wakes me up … but it’s hard to wake up if I have to be up at a certain time. I use an alarm clock that can do a few things: it can connect to a light and flash it to wake me up (this would never, ever wake me up), it has a very loud alarm that can be made higher- or lower-pitched (this would never, ever wake me up), and it connects to a little disc that you can slip under your mattress or pillow, which vibrates/shakes the bed when the alarm goes off. THIS wakes me up. Boy, does it wake me up!!
The cochlear implants didn’t cure my deafness; I will always be deaf. Thanks to my CIs, I have a foot in the hearing world and a foot in the deaf world, which is pretty cool.
My CIs use rechargeable batteries. (This is different by brand – I use Advanced Bionics CIs.) There are two sizes – a smaller SlimCel and the larger Plus, which lasts longer. I started out with the Slims because the Plus size was too heavy for my ear, especially while I was healing. After a while, my left ear was able to handle the Plus size but up until about a month ago, I wore mainly Slims on my right ear. Now I just use a Plus on each ear, and the batteries usually last me the entire day. If I’m staying up really late, I might need to switch them out. With the Slimcel, it was getting to where I had to change batteries at least once, sometimes twice. (I need to get new batteries, since these are now four years old!) I keep two backup batteries in my purse, and I have four on my charging station that are always ready to go.
When my batteries die, there is no warning. With hearing aids, I could usually tell when the battery was about to go…my hearing would get slightly worse. Now, you could take the CI off, slip the battery off and then back on, and see how many lights flash on the processor. (Four lights means it’s fully charged; one means it’s almost depleted.) But as far as just wearing it and having the battery die, it just goes. I mean, one second you hear and the next you don’t. It’s a little weird, but I’m used to it now.
The CIs have enabled me to hear things I didn’t hear with my hearing aids. Before I lost all my hearing, I wore bi-CROS hearing aids because my right ear was completely deaf. So I wore a ‘transmitter’ on that ear, which looked like a regular hearing aid, and it wirelessly transmitted the sound coming in on that side over to the hearing aid I wore on my left ear. Now I actually hear things in each ear, which took some getting used to. I always used to position people on my hearing side, the left. It took a long time to stop placing myself in position to hear (sitting or walking with people to my left, that is). I never used to be able to tell what direction sound was coming from. It took about two years to start to really be able to do this with my cochlear implants, but now I can often discern which ear “heard” the sound. It is very, very cool!! I also hear more high-pitched sounds, things I never knew even made noise…like bubbles popping, for instance. I have still never heard a mosquito or fly buzz. I suspect my hearing loss is such that I just will never hear that.
I do have some electrodes in the higher pitches completely turned off (two or perhaps three). This is different with everybody – we all have different reasons for our hearing loss. When I hear the higher tones, it makes me very, very dizzy. I can’t tolerate it at all. I think this is probably why I have trouble on the phone. Many people with CIs use the phone, but for me it is very difficult. I can understand computer voices (the voicemail menu, for instance) but when a real voice kicks in, I often struggle to comprehend what I’m hearing. I have a phone that captions the conversation on a screen for me. There’s a bit of a delay, and many times the words are captioned incorrectly, but it’s definitely better than nothing! I can handle a very short conversation but I no longer use the phone about 95% of the time. I stick to texting and email. I think missing those higher pitches makes it harder for me in that situation, since that’s what helps us understand voices.
Same with the TV – I do still need captions when I watch TV or movies. It’s hard to explain, but unless I can see a face and read lips, it just sounds like…sound. If it’s very quiet, the person is not speaking quickly and their voice is very clear, I can sometimes follow along. But there’s almost always some kind of other background noise – music, laughter, gunshots, what have you — that get in the way of understanding what I’m hearing.
I’m not disappointed by this, or apologizing for it. I mean, my gosh—I’m deaf, hearing via a little computer I wear on my ear, and I can talk a bit on the phone and hear music, television and movies. So I still need some help with captions – so what? I was going to be happy even if all I heard was environmental sounds…anything other than 24/7 tinnitus and no real sound other than the crazy noises in my head. So I’m extremely pleased, thrilled even, to be watching TV with captions and cautiously, sparingly, using the telephone.
After I had the surgery, I could not hear. I had to wait a month before I wore the external parts (the processor and magnet headpiece) and got them ‘activated’ so I could hear. This is different with every CI clinic; some places do activations a week after surgery, some wait longer than a month. I was glad to wait a month because my ears were definitely too sore to wear the processors before that. I really did need that time to heal. My skull was still swollen even a month later and I had to use really strong magnets to keep the headpieces in place (I’ve since switched out to lighter magnets).
To activate the CIs, the audiologist will hook you up via a cable to his/her computer. (They take the battery off the CI and replace it with the cable.) You listen to beeps and tones and tell them what sounds most comfortable. At first it all sounds weird and robotic; some people just hear beeps instead of actual sound. As days go by, your brain adapts and you begin to hear things in a more normal way. Voices sound strange, like Darth Vader or the chipmunks.
I go back periodically for “mappings,” where I get connected to the computer and the audiologist adjusts the volume and fine-tunes electrode-related things. In the beginning I went every week, then every month, every 6 months, every year…now I just go when I feel I need an adjustment because my hearing seems off. I can get future improvements via the computer programs they put on my processor, without having my internal component replaced.
The surgery usually makes you lose whatever residual hearing you had. This was not an issue for me – I had no hearing to lose – so being deaf during recovery was just more of the same. But you don’t have to be completely deaf to get a CI – you just have to score low enough, wearing a hearing aid, on the hearing test. (How low your score needs to be depends on insurance and/or the clinic.) It used to be that you had to be pretty much deaf to get one, but over the years that threshold has changed and now there are many people who still have hearing and get a CI in order to improve upon that hearing and be able to hear voices again. There are many people who have a CI in one ear and wear a hearing aid in the other. Incidentally, Dave has looked into getting a CI because he is completely deaf in his left ear and wears a hearing aid in the right. He gets his medical coverage through the VA, and right now he tests too well with his hearing aid on to qualify for a CI for his left ear.
Styling my hair can be a little bit of a pain – I have this cord running from my ear back a couple inches on my head to the magnet. I can’t run my fingers through my hair to fluff it up or smooth it out without catching on the wire. I take my CIs off to style my hair, and I have to be careful when I put them on to keep the wire from flattening a big section of hair. (This is a girly thing…I’m sure guys don’t have this problem!)
I don’t try to hide my CIs. I think they’re really amazing and I like to show them off. I very rarely get asked about them. I never notice people looking at them although Dave has said he’s seen people behind me looking at my head (I have colorful covers on the magnets). Only once have I had someone ask me about them; it was in Target, and a lady walked past me and then doubled back. She asked if I had cochlear implants and we began talking; it turned out that her daughter had a CI as well. I also saw one guy with a CI at my daughter’s school her senior year. (She won an award and they had a breakfast for the kids and their families.) Afterward, when people were mingling, I saw him talking to somebody and it was very easy to see his CI. When there was a lull in the conversation, I went over to him and we talked a bit about our CIs. I never did this with people who had hearing aids! 🙂
I just realized how absurdly long this is, so I’ll wrap it up. I know I didn’t cover everything, so if anyone is reading and has a question about what it’s like to have CIs, I’d be happy to answer (if I can…I’m not really up on the technical aspects of things, for instance).
In one of my posts last month, I mentioned that Dave will be starting treatment again for his Hepatitis C. I’m in a medical frame of mind because I have to find a new doctor this month, so I thought I’d catch everyone up.
I always hate looking for a new doctor. I feel more comfortable with women, so that knocks out a lot of possibilities. I have to guess whether the doctor will have an accent or not (I really, really try to avoid anyone with an accent – my medical stuff is just too important for me to be guessing about what the doctor’s saying). I want someone close by, so that if I’m really sick I don’t have to drive 45 minutes just to get to the doctor’s office. And I don’t know anyone in town to ask for a referral, so I just have to pick a female medical practitioner that works out of a nearby office and has a non-accenty-sounding last name.
I really only need to see the doctor to get my medication refilled (I take medicine for high blood pressure and cholesterol, both of which run in my family). Of course, losing 35 pounds and exercising every day has hopefully made a positive effect on both those things, so my medication may end up getting changed or even discontinued … we’ll see. But I don’t have any chronic health conditions; I just know my medications will run out on Feb. 18th and so I figure I should get a new doctor by the end of this month. I’m not looking forward to it.
Dave has it a little easier because he has to go the VA, and he just gets whatever doctor they assign to him. (Of course, figuring out WHERE to go was the hard part as far as the VA health care system is concerned.) When he went for his new patient visit at the South Bend Clinic, his doctor was really great – very easy to understand, willing to listen to Dave’s concerns and address them appropriately, very friendly and good natured. He’s an FNP, which is fine with us — I’m actually planning to make an appointment with a female FNP at the clinic I’ve been planning to go to (all the MDs are male, and I have had good luck in the past with FNPs).
One of the things he touched on at Dave’s visit in October was his unsuccessful Hep C treatment in 2013. We were surprised to find out that they have new medicine now, just a single pill with no Interferon shot. They seemed really eager to get Dave going on this new treatment, so he made an appointment in November for him to see the liver specialist.
This appointment was so cool. The South Bend location is just a clinic, and the liver specialist works out of Fort Wayne, Indiana which is about two hours south of us. Rather than make us drive to Ft. Wayne, they did a video conference appointment in South Bend (which is less than 30 minutes away). There was a medical technician there, and he set everything up … then we waited for the doctor to join us on the TV screen that was in the room.
Dave was able to understand pretty well – they had the volume turned up and we could see the doctor’s face to read his lips. He asked Dave all kinds of questions, went over his medical history, and then told us about the new treatment. It’s not supposed to have many side effects, at least not compared to the hellish treatment Dave was on in 2013 (Ribavirin and Boceprevir pills daily, plus Interferon shots once a week). Even though Dave didn’t clear the virus, he is still a good candidate for this new treatment.
Then the doctor asked the medical tech to listen to Dave’s heart and lungs. He hooked up a stethoscope somehow so that the doctor could hear the same thing he heard. The doctor told the tech where to place the stethoscope, and told Dave how to breathe (deep breath, hold his breath, etc.) It was really amazing!
I think the new medication is Sovaldi (sofosbuvir) but I don’t know much about it yet. I think Dave will just be taking the one pill, but it’s possible he has to take it with Ribavirin. I do know for sure that he doesn’t have to do the Interferon injections; the Interferon was what really messed up his thyroid and made him so sick last time.
When he went through the treatment in 2013, we had to go to classes to learn about each drug and its side effects. I don’t know if this treatment is that involved, but I don’t think it will be. I do know that we have to drive to Fort Wayne every two weeks to pick up his medication. They’ll give him a two-week supply; then two weeks later we have to drive there again to pick up the next supply, for a total of 12 weeks. I feel that this is a huge pain in the ass – four hours of driving, plus the cost of gas, and wear and tear on the car. But Dave said it’s absolutely worth it to him – he wants to clear this virus once and for all. I’m kind of hoping that after one or two trips, they’ll just have the medicine waiting for him at South Bend for us to pick up. (He doesn’t think this will ever happen.) I remember one of the guys in the classes we took at Hines VA was from a town about an hour and a half away. He was at maybe two of the classes, and then the nurse who was in charge of the program set it up so that he could pick up his meds at the clinic near his house. So I’m thinking maybe someone will take pity on us and do the same, even though it’s a different hospital.
We’ve never been to Fort Wayne, but we’ll be going next month so Dave can have a liver ultrasound – they want the results of this test before he starts his treatment. The doctor was kind enough to take into consideration the unpredictable winter weather we have in this area, and he’s having him wait until March to start treatment. He has another remote video conference appointment with the liver specialist in March (in South Bend) where they’ll go over the results of the ultrasound. And then probably later in March, or in April at the latest, we’ll make the drive to Fort Wayne to meet the liver doctor in person and get Dave’s first two weeks’ worth of medicine.
Hopefully this treatment will work, and I’ll be posting that he’s cleared the virus by the end of 2015!
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.
Each time I lost my hearing (1993 for my right ear, 2008 for my left), I was surprised and disappointed by one thing: I was not offered any type of support for dealing with such a monumental loss. And this is not to say anything bad about my audiologists and doctors, because I really like them. But other people have mentioned it too, the lack of resources, information and support for late-deafened adults, or anyone suffering from sudden loss of hearing.
In 1993, the only thing offered to me was a different type of hearing aid, a bi-CROS that brought in the sounds from my newly-deaf side. I was thrilled with my new hearing aids, so no complaints there. But I had lost so much hearing that I could no longer hear my alarm clock for work each morning. I had NO idea that there were ALDS (assistive listening devices) for hearing loss, beyond an amplifier for the phone. The audiologist didn’t tell me about them. My husband at the time was the one who talked to the audiologist and found out about an alarm clock that would shake the bed to wake me up. I mean, they sold them right in the office – why wouldn’t she offer that information, knowing I had just lost all the hearing in my right ear and had a profound loss in the left?!
The internet was in its infancy in 1993, so the alarm clock and new hearing aids were the full extent of support I received. In 2008, my loss was much greater because I was now completely and totally deaf. They couldn’t offer me hearing aids. I didn’t know sign language, and neither did any of my family or friends. Yet again, once I got the hearing test that confirmed I was hearing absolutely nothing, I didn’t receive any information on how to deal with being completely deaf. That just blows my mind.
They put me on steroids to see if my hearing would come back; just like in 1993, they didn’t help. When I went back in for the follow-up visit, I was prepared. Thanks to the internet, I had done my own research. I knew I could receive a free TTY if the doctor signed off on it, and I knew about cochlear implants. I was the one who asked if I could get CIs (although hopefully if I hadn’t immediately asked, they would have offered it as an option). I was the one who asked if they could help me get the TTY. I found the state lending program that also gave me a flashing light for the phone (not that I was using the phone at that time).
Can you imagine losing all your vision, going to the doctor and having them say, “Well, yep, you’re blind,” and then sending you on your way? You have to hope they’d give you a list of resources for cane training, a service dog, learning Braille, programs to voice text for you, etc.
I didn’t find online sources of support until 1997, when I suffered from a horrific ear infection in my good ear. I spent almost two weeks without my hearing aids, using just the very limited hearing in that ear – it was already profoundly deaf, and I spent much of that time with my ear filled with medicine and covered with a cotton ball. I was a single mom at that time, and I was scared at how close to ‘deaf’ I really was. I had been able to fool myself into complacency with my hearing aids, and not having them to rely on really scared me. So I started searching for hearing loss support groups, hoping to meet other people like me. I have never interacted on a regular basis with someone that had hearing loss, so I didn’t have any real-life support of that type.
I found the Say What Club, and they are still active today. Back then, it was just one or two mailing lists; you signed up and they assigned you to a list, and then you would receive everybody’s emails. That was where I first learned of CIs and many of the ALDs I’m familiar with today.
I also joined SHHH, which later became HLAA (Hearing Loss Association of America), and ALDA, the Association of Late Deafened Adults. These are large organizations that have websites with lots of information, newsletters/magazines, and yearly conventions. Nowadays I am also a member of Illinois Cochlear Implant Chapter, which has local meetings every other month.
If you’re dealing with hearing loss, whether it’s recent or not, it can really help to be part of an online support group. I love email because it eliminates communication barriers; real life meetings are also nice because all the ones I’ve been to are captioned with CART. Now that I have my CIs, I usually don’t need CART to understand at a meeting, but it is still hit or miss whether I’ll understand a question from someone in the audience. CART captions everything being said, and it’s nice to utilize it for those soft-voiced questions or for a speaker with a heavy accent.
Losing your hearing can really isolate you. It’s tempting to want to stay home and avoid social interaction because it’s so exhausting, trying to read lips and follow conversations. It can be disheartening to be part of a large group and have no idea why everyone is laughing. Being part of a support group means that these people know what it’s like to have a hearing loss, and they don’t mind doing whatever needs to be done to be understood. At conventions, you’ll see people facing each other and reading lips, signing, writing notes. I still remember our first ALDA convention in 1999, when we joined others for dinner and dancing. We didn’t know how those who were deaf could follow the beat, until some friends showed me and Dave that if you hold onto a balloon, you can feel the vibrations of the music. How cool is that?!
Hopefully audiologists will catch on and realize that more needs to be done to support a newly-deafened adult. I would be curious, if anyone out there is a parent of a child who was diagnosed with hearing loss, if they were offered sources of support and help by their audiologist. Is it just adults who are sent off to deal with this on their own?