Monthly Archives: January 2013
Every so often, I get a request from Advanced Bionics to mentor a person who qualifies for a cochlear implant and has questions, or would just like to talk to someone who already has one. It’s strictly volunteer; I don’t get paid for doing it and I can choose whether or not to accept the mentoring opportunity. The majority of my mentoring has been done online, via email. This past weekend, though, I got the chance to talk with a fellow who lives in the area and was hoping to talk to a CI recipient face-to-face.
He and his wife came by and spent a few hours talking to me and Dave. We really enjoyed talking to them, and we found that we had a lot in common regarding this invisible ‘disability’ of ours. We were the first hard of hearing/deaf people he had ever met in person. I can remember what that was like, meeting my first hard of hearing (HOH) friends. Growing up, and into my early 30s, I had no friends or even acquaintances with hearing loss. I was the only person in school with a hearing loss (that I knew of, anyway). All of my family members, friends, boyfriends and my first husband were all ‘hearing people.’ It is such a relief to finally talk to someone who gets what it’s like to have people assume you’re stuck up or rude because you don’t respond to them, someone that knows what it feels like to have people assume you’re doing fine because you can hear a certain sound…but they don’t get that just because you hear it doesn’t mean you understand what you’re hearing.
In late 1996 through 1997, I was a single mom with two young children, working full time and getting used to doing things on my own. I was going along okay, feeling pretty proud of myself for my coping skills, when I got a raging, horrible ear infection in my good ear. (At this time, I had a severe loss in my left ear and was profoundly deaf in my right ear; I wore a hearing aid in my left ear, which was my ‘good’ ear.) I used to get periodic middle ear infections from having an ear mold in my ear all day long; they were painful but I could deal with them. This one, however, was beyond anything I’d ever experienced. I was running a high fever and in so much pain that all I could do was cry. I saw my ENT, and he actually had to place antibiotic-soaked cotton down inside my ear with some kind of instrument (I cringe just remembering this!) because my ear canal was so swollen that drops would not go down inside to where they needed to be. He also prescribed antibiotics, as well as Vicodin for the pain. Usually I can’t take Vicodin; it makes me sick to my stomach. I broke the pills in half and, let me tell you, it was the only thing that would even bring me a touch of relief.
I was off work for a week as I dealt with this, and my parents took the kids for me. The cotton deep inside my ear, combined with the fact that I couldn’t wear my hearing aid, rendered me completely deaf during that time. It was my first experience with total deafness, and it scared the crap out of me. I realized I was not really that far away from being deaf, and that I had no coping mechanisms in place for it. That’s when I got my bed shaker alarm clock, and started looking into online support groups for people with all forms of hearing loss. That’s when I got my first deaf and HOH friends.
I joined a mailing list, which still exists today, called the Say What Club (SWC). When I introduced myself, I explained my hearing history and what I was currently dealing with, and expressed an interest in learning sign language. Everyone was so welcoming and friendly, and I was amazed at how good it felt to talk to other people who knew what it was like to deal with hearing loss. One of the people who welcomed me was Dave, and that is how we met. He sent me a huge box filled with books and videotapes on sign language, since he used to teach it. I was blown away by his thoughtful gesture, and I really liked the way he expressed himself in writing, so we became fast friends.
At the time, I was casually dating (a couple guys from work, a couple people I’d met online) and really having no luck with it. I was getting fed up with dating in general and was about to swear off any kind of love life for a few years, until the kids got older. It wasn’t worth the hassle. Dave was just a few years out from his bone marrow transplant, and he felt it wasn’t fair to get into a relationship with someone because who knew if his leukemia would come back or if he might have some other complication. So we were just friends, writing emails and meeting up with other SWC friends in chat rooms. I can remember kind of yelling at him about his reason for not dating somebody – I mean, we could all die tomorrow…is that a reason to pass up an opportunity for love if you find it?
As 1998 came along, I could tell he was starting to like me as more than a friend. We hadn’t met in person, and I tried to discourage him because I knew what it was like to meet someone in person after knowing them online. You kind of fill in what you don’t know with your ideal image of what you want in a person; once you meet them for real, it’s kind of hard for them to live up to that imagined ideal. He basically blew off my warnings, sure that everything would be just fine. I was nervous, worried that he’d meet me in person and be truly disappointed, and then our friendship would be awkward and weird. I didn’t really tell anyone about our burgeoning relationship; this was back when meeting someone online was fairly rare and everyone was convinced that the only people who would do that were serial killers and psychos.
We made some tentative plans, and then our actual meeting ended up being really spontaneous. It was the end of March, and my plans with a friend from work had fallen through. It was early Friday night, the kids were at their dad’s for the weekend, and Dave called. As we talked, I mentioned my now-free evening and he said, “How about if I come over?” I thought he was joking, but that’s exactly what he did! He drove from his apartment in Michigan which, at the time, was over four hours away. He got a little lost so he didn’t arrive on my doorstep til nearly 11:00. This was before the days of cell phones (especially for hearing impaired people) so I just had to wait and wonder if he would ever show up.
When I opened the door, I was so scared. I mean, what if I hated this guy in person? And he was there, in my house…how would I get rid of him? It wasn’t like a date in a restaurant, where I could make an excuse and leave. My first thought was that he was shorter than I pictured; I was standing a little above him in the doorway, while he stood further down on the porch. When he stepped in, smiling broadly, I realized he was actually the perfect height for me (I’m barely 5’1” and he’s 5’8”). We hugged, he proudly showed me the WebTV device he’d brought along (this was how he accessed the internet — no computer for Dave) and we started talking. It took me about five minutes to realize everything was going to be just fine; he was basically the same in person as he was in email – funny, articulate, interesting and kind.
That was nearly fifteen years ago and the rest, as they say, is history. We dated long-distance for a couple of years, and then Dave moved here from Michigan. We got married Feb. 2, 2002 – we’ll be celebrating our eleven year wedding anniversary in just two weeks. All of that from one chance gesture, reaching out to connect with people in the same boat as me. Ain’t life grand?!
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 the latest 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 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 wear a CI and a hearing aid. 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 CIs, I’d be happy to answer (if I can…I’m not really up on the technical aspects of things, for instance).
On this day 16 years ago (!!), I started a new job. I was terrified, I’m not ashamed to admit, as I sat on the visitor’s couch waiting for my new boss to come out to the reception area to claim me. It was my first full-time job since 1990; after my kids were born, I had switched to part-time hours at the place I worked previous. I was rusty anyway, whether full- or part-time, because I’d been staying home for the past two years after my youngest was born. I had dropped my kids off with their new daycare lady, and that alone was nerve-wracking. (Would they hate it? Did they miss me?) I wasn’t sure I could even do the job I’d been hired for, but providing for the family was solely my responsibility; I was new to the single mom gig as of the past couple months. I had to make this work.
After waiting a while, I heard a brisk clack-clack-clack from down the hall, and saw my new boss rounding the corner. I stood up and smiled as she came to a stop in front of me and demanded, “Why are you here??”
To say that it wasn’t the greeting I expected would be a gross understatement. I was horrified and embarrassed, to say nothing of confused. What had I done wrong?
It turns out she wasn’t expecting me on that day; in fact, I got the impression she didn’t feel she had actually given me the job. She just seemed completely stunned that I was there, and I couldn’t tell whether I had shown up on the wrong day or if I had somehow seriously misunderstood and she just plain didn’t want me there. I mean, she had called in December to offer me the job, told me the starting salary, we agreed on my starting date…it was all just very bizarre. To this day I still don’t know what the problem was; the only thing I could think of was that perhaps I misheard her on the phone and she said January 7th, not January 2nd.
I didn’t know what to do, so I asked if she wanted me to leave. She shook her head, all irritated and rushed, and said, “No…I mean, you had to arrange daycare for today, right? Just wait, let me see what I can do.” So I sat back down, really embarrassed now as the receptionist watched with a look of pity in her eyes, and my new boss rushed away.
Eventually she came back with my welcome packet and a nicer attitude, and the day improved from there. I ended up working at that company for five years, until my administrative assistant position was eliminated and my boss (the same lady from day one) went on extended medical leave.
This year could mark a career change for me, and in the back of my mind I’m always considering possible jobs or entrepreneur opportunities. When I think about how scary it is to re-enter the job market after working for myself for so long, I just have to remember that day 16 years ago; if I could survive something that uncomfortable and come out okay, I can probably handle whatever gets thrown at me now. 🙂