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).