Category Archives: Emotions & Attitude
I’ve written about this before, but it’s on my mind again because tomorrow marks 15 years (15 years!!) since the day Dave and I met in person. Before I met him and started hanging out with him, I had really never been around someone with a hearing loss. I learned the hard way that personally having a hearing loss did not mean I was automatically aware of how to communicate with someone else who was hard of hearing. Kind of like how going deaf didn’t suddenly give me the power to understand and communicate in sign language.
I’m the only person in my immediate family with a hearing loss, so I grew up knowing they could help me out if I didn’t hear something. All of my friends, boyfriends and my first husband had normal hearing. I was 33 when I met Dave, so I’d had plenty of time to get used to having other people help me out when my own ears fell down on the job. That was the first big eye-opener for me.
I’d hear something and turn to Dave. “What was that?” He’d shrug and say, “Beats me!” I’d leave the water running in the sink, walk off and forget about because I didn’t hear it. He didn’t hear it either; who knows how much water we wasted before one of us noticed the silent stream gushing forth from the faucet.
We’d go out somewhere, and I would actually have the advantage because I was better at reading lips. The cashier would give me the total, and I wouldn’t really pay attention because I was used to the person I was with being able to hear and relay the amount to me. Dave would be silent – he had no idea either. I learned to be more vigilant, especially in noisy situations. I couldn’t hear well, but I could read lips and thus became the ‘hearing person’ in that situation. Talk about role reversal!
I was used to just talking, probably at a lower volume than normal since my own voice always sounds loud to me (whether I had hearing aids or CIs). I didn’t bother to make sure Dave could see my face, or that I was even in the same room. I’d get no response at all from him and I’d realize, “Huh. What an asshole I am – I’m not even attempting to be considerate!”
It probably took a month or so for me to get used to this, checking my annoyance if he didn’t hear me at first – it was my fault, for not doing what I knew needed to be done for him to understand me. It was so weird to realize I was really bad at being considerate and thoughtful when it came to communicating with the man I loved. It truly was not second nature at all.
When we first met, my hearing loss was a little more severe than Dave’s but in the opposite ear. So he wears a hearing aid in his right ear; I wore mine in my left ear (and the transmitter on my deaf right ear – they were wireless bi-CROS aids). Dave just wears the one hearing aid and is profoundly deaf in his left ear. So we got used to positioning ourselves so our good ears were next to each other. We have a double computer desk and Dave sits to my left; when we watch TV or movies, I sit on his right side. When we go for walks, I’m on his right side. If we’re both in the car, he always drives (that way his good ear is next to me). The only time I drive now is if I’m going somewhere alone – I’m getting a little spoiled, always being able to kick back in the passenger seat! I contribute to our road trips by operating and translating the GPS system for him – half the time he can’t understand what it’s saying, and the other half of the time he chooses to be ornery and ignore the directions while yelling at Maggie (our Magellan GPS…you’ve named yours too, right?!) and telling her she’s crazy.
I learned that even though our hearing losses were a little bit different in severity, being able to read lips gave me the advantage in noisy situations. I got used to being the one to help if he didn’t hear a question from the waitress or cashier or salesperson.
So over the years I learned the tricks to communicating with a hard of hearing person. Make sure they can see you when you talk, and make sure you’re talking clearly…not too loud or soft, no exaggerated lip movements, not too fast or too slow. Dave tends to leave his hearing aid out, especially in the morning, so I try to remember to look at his ear and see if he’s wearing it. If not, I talk louder and stand right in front of him.
If I’m behind him, I’ll gently touch his arm to get his attention. Sometimes this still scares the crap out of him, but I learned a gentle touch is better than a tap or grabbing his arm or something. If there’s a really loud noise (coffee grinder, loud music), I’ll wait until it’s over before I talk. Sometimes I can’t tell if he can hear me or not, so I ask. “Can you hear me? Am I speaking clearly enough?” We both sometimes still do the deaf nod thing with each other, but by now we can usually tell when the other is faking and I, personally, derive great joy from calling Dave out on it.
When I went deaf (almost five years ago now), Dave was so amazingly patient and thoughtful. He never expressed a single iota of frustration over having to repeat himself. He happily learned signs with me and was willing to try whatever I was interested in (we even watched a DVD on cued speech). He never told me, “It’s not important; never mind.” I think patience and kindness are so important – it goes such a long way when someone wants to communicate with you and you take the time to do what needs to be done to facilitate that. No eye rolling, no exasperated sighs, no sharp tone of voice – just kindness and patience. It’s easier said than done!
Now I’m in a weird position where sometimes I hear much better than Dave does, even though I’m technically deaf. I have a much better time understanding people with accents, using the powerful combination of my cochlear implants and speech reading. Many of Dave’s doctors have accents, and they share information we really need to know, especially with his Hepatitis C treatment coming up (it starts April 10th). Whenever he has an appointment with a specialist or for anything other than a routine checkup, I go with. I take notes. I make sure he doesn’t miss anything, and that we advocate for whatever he might need.
It’s been 15 amazing years, and he has taught me so much. It really all started the first time I realized this was going to be a different experience, dating a guy with hearing loss. He was adding milk to my coffee, and he told me to say ‘when’ because he didn’t know how much I wanted. He poured; I said, “When.” He kept pouring, and I thought, What the heck?! Why isn’t he stopping?! It finally dawned on me…he didn’t hear me! I yelled, “WHEN!” and he looked over, startled, just as the cup was about to overflow. And so it began…my hearing loss education.
Three years ago, I woke up on this day and put on my hearing aids. I didn’t really expect to hear anything; the day before was my doctor appointment/hearing test when I found out I was totally deaf in both ears. But still, there was that little hope that maybe they were wrong, maybe my hearing was coming back.
Just the act of waking up and remembering my hearing was gone made me sick to my stomach. Another day of working so, so hard to understand what everyone was saying. All I had to rely on was my speech reading skills, with a few signs and finger-spelling tossed in. My mind was just in constant turmoil; I wanted to curl up in bed and cry and refuse to believe this was happening to me, but I had my kids to think about, candles to make and ship.
The first entry in my blog was called “Hindsight is 20/20.” In that entry, I was looking back at that day, wondering if it would have mattered if I had realized all those ‘weird hearing’ moments were actually a sign of things to come. Maybe I would have gone to the doctor sooner…would that have helped preserve some of my hearing?
Now, though, I’m thinking that I wish I could have looked forward from that day, or that time in general. If I could’ve seen myself today, right now, sitting here typing and hearing the keys as I hit them, hearing the door slam as Dave goes out to the garage, hearing Toby’s doggie nails as he walks across the floor…well, I could’ve been spared so many days of sadness. I would still have grieved losing my natural hearing, because nothing can bring that back. But if only I had known that this absolutely amazing technology would let me hear things I’d never heard before!
I was talking to Dave about the fully-implantable CIs they are working on –you have to have surgery every 10 years to replace the implant because the batteries only have a finite life (of course). As we debated the pros and cons, I realized that I really like the situation I have now. I really don’t mind being in my ‘natural’ (deaf) state when I’m sleeping, for instance. If I had the added input of noise and sound, I’m not sure how well I’d be able to sleep. Even when I still had some hearing, I took my hearing aids off at night and had a much reduced level of sound coming in. I’ve basically never had full hearing while I slept. I definitely wouldn’t want to have surgery every 10 years!! On the other hand, it would be awesome to be able to hear while I was swimming, and to not worry about getting my CIs wet if it’s raining.
Right now I feel like I have the best of both worlds. Who knows what the future brings? Someday I might write another blog entry referring back to this one, talking about all the wonderful advancements I wish I had known about back on April 17, 2011.
(Is it just me, or is the first sentence of a blog entry the hardest one to write?!) Okay, so it’s been almost 2-1/2 years since my cochlear implants went “live”, and if you’re curious about life with cochlear implants a few years later, this is what it’s like for me.
I wake up in my natural deaf state, and no longer cringe at the thought of how loud it’s going to be when I put on my processors. I’m not sure if it’s just that my last mapping was extra-excellent or what, but usually as months go by, things just sound louder and louder to me. I’m only going once a year for mappings now, and by the time I went in Sept. 2010 I was pretty much keeping my CIs on the ‘background’ setting all the time. This setting compressed a lot of background noise and just kept things at a better level for me. That’s way in the past now. I don’t even change to ‘background’ in the car or stores automatically, the way I used to. Now I pretty much stay on my regular listening program (at 12:00 for volume) from the start of the day to the end.
Listening with just my right ear (the worst one) is better now – voices no longer have the computerized, Darth-Vader quality to them. But I do really need both ears to understand without lip reading. If one of my batteries dies, or I slip my headpiece magnet off because the dog is barking like crazy (as I just did!) then I need to lip read to understand speech. With both processors on, I can generally carry on a conversation with someone in the room without needing to look at them.
The phone will never be my friend. I know there are people with CIs who can just chat away on the phone but I assume they don’t have the phone phobia that I have – I just hate the phone and I always have. The only way I’ll feel comfortable on the phone is if I can perfectly understand every word I hear, so I don’t have to stress out about it. That’s not the case, so talking on the phone is my absolutely least favorite thing to do. I can do it – especially with the CapTel phone (this phone captions what the other person is saying, although there’s a bit of a lag and the captions are often not accurate) – but I only use the phone if I absolutely have to, for the shortest amount of time possible. Like I said though, this is partly because I’ve never been one of those people who likes the phone. I think a couple of other things play into it for me – the fact that I still have a high frequency loss even with my CIs, and the fact that I hear better with two ears than one. I know I could probably do some kind of convoluted thing with a neckloop and putting both my CIs on T-coil to get the bilateral effect (I think…I’m not even sure about this) but the phone is just not important enough to me to make that kind of effort. Give me email or texting, thanks!
Music is pretty good now, especially with music I already know. I do practice listening to music on Pandora – I have a couple stations set up so that they play music I’m familiar with (or that is similar to that music) and I pop some headphones on and just listen. I find that if I don’t do this, the quality of music does go down for me. It also sounds better through headphones or Direct Connect. But it has improved so, so much since the early days of listening with my CIs. It used to just sound like crashing noise, especially music coming through the television. For instance, we watch House and the intro song is Teardrop, by Massive Attack. I always really liked this song before I went deaf, but after my CIs were activated it sounded truly horrific. To be honest, I usually fast-forward the intro credits/song with our TiVo but lately I’ve been known to let the House intro play through, just so I can enjoy how good that song sounds now!
I’m tempted to do the list of things I can hear now, but yeah, that can be pretty boring to read. Still though, it’s pretty cool to jump out of my seat when the dryer buzzes (downstairs!!) or to look around and wonder what the heck that noise is, only to see it’s my cat (way over on the couch) licking her paws. Come on – I never even knew that made a sound!
I don’t have superhuman hearing though … last night Paige was sputtering and exclaiming about the fact that the neighbors were having a party (on Saturday night, geez) and playing their (crappy, according to her) music too loud. Dave and I listened for a minute, shrugged and said we didn’t really hear anything. “But you’re deaf!” was her response, spoken with classic teenage exasperation. I had to laugh – she’s right about that!
So… identity, something I think I probably talked about before but it could use some updating. I imagine most people with cochlear implants question their identity sometimes, as far as the “Deaf or not deaf?” question. Before I went deaf in April 2008, I said I was hard-of-hearing or hearing impaired; that label doesn’t bother me because yeah, my hearing was impaired. It didn’t offend me to say it. And now when I wear my CI processors, I hear even better than I did back then…so do I still say I’m hearing impaired? Nah, I say I’m deaf, because I am. What I am when I wake up in the morning…I’m deaf. No big deal, and it doesn’t bother me.
So I’ll usually tell people, “I’m deaf, but I hear through cochlear implants.” I might explain that it helps me to lip read as well (if I’m dealing with someone that has an accent or a voice I’m not used to, I use every tool I can to help me understand). Most people accept this without even questioning it and just continue to talk to me as they already were, maybe making sure to look up when they are speaking. But a few times I’ve had people just stop and get visibly nervous – one guy stopped using his voice completely and would just nod and gesture to me. That’s fine too – I know sometimes they hear the word ‘deaf’ and just stop listening after that because it can be scary to wonder how to communicate. If I get a chance, I’ll point out that my CIs do help me to hear to put them at ease.
My tinnitus is GONE, folks. That was probably the hardest part of being deaf – it was not quiet like I always figured it would be. It was constant, crazy noise all day and all night, until I went to sleep. There was never any relief at all. It’s hard to explain what it’s like to hear all that noise and never be able to escape it. I’ve always had tinnitus but in the past, I would put my hearing aids on to get rid of it. My brain needed to hear something in order to settle down. Once I went deaf, there was nothing to hear. After surgery (but before activation, which was a month later), I still had tinnitus but the quality changed. I heard pretty much the same few sounds rather than a wide variety of sounds (music, talking, etc.) like I used to. Once I was activated though, my tinnitus disappeared within a week or two. It is really peaceful now if I have my processors off, because I hear actual silence! Every now and then I might get a soft sound, whooshing like the ocean or a couple of beeps or something, but it’s so soft and so rare that it just doesn’t bother me. Even at night when I take my processors off, the most I might get is some soft sounds but it’s barely enough to be noticeable…for all intents and purposes, I consider the tinnitus gone (for now, and hopefully forever).
One more thing I wanted to touch on – captions. I’ve seen a few people ask if getting CIs means you don’t need captions on the TV anymore. Like everything else, this is going to be different for each individual. For me, I still need captions. I don’t need them if the person speaking is visible on the screen and I can read their lips, but for voice-overs I still rely on captions. Sure, I can catch maybe 50% of what’s being said without captions, and I do practice this…I glance down at the captions only when I need to. We’ve also gone to some movies without open captions – we saw Avatar and Tron in the theater the first week they were out, before the open captioned versions came to our area. I didn’t catch everything but caught enough to follow the movie. So I definitely do better in this area with CIs than I did with hearing aids, but I do still rely on captions. However…my husband is also hearing impaired and my daughter loves captions (even though she doesn’t need them) so our TV will always, always have captions on!
Anyway, if you’re reading and you recently got a CI, it gets even better and better. Even once you stop going for mappings every couple months, it still gets better. What I hear now is what I remember hearing before I went deaf…and then some. I could not ask for more!
I’m always writing blog entries in my head. If I could just publish right from my thoughts, this blog would be updated every day. So let’s see…summer has been pretty laid back. Laid back, but yet weird. It’s been, like, the Summer of Ennui. So many things have been contributing to this general feeling of distraction and dissatisfaction, like we can’t seem to get anything done.
The candle business has been unusually, deathly slow. Summer is always a slower period for us but this summer has been like no other. Normally we would take the extra free time to finish projects around the house or just go out and do things…maybe visit some museums in Chicago, for instance. (Chicago is about 45 minutes away by car, but we rarely go there so it’s like a little vacation when we do.) But the downside is, we have no money to do household projects or even a museum trip, because business has been so slow. A vicious circle!
In addition, Dave’s health has been up and down (mostly down) this summer and many days he just doesn’t feel like himself, strong enough or good enough to work around the house or trek through a museum. He’s been coughing frequently since October or so, and they can’t figure out why. He’s seen an ENT doctor and a pulmonologist this summer, had a CAT scan of his lungs and a pulmonary function test, plus a couple of scopes sent down his nose into his throat (which he really, really hated). So far the verdict is acid reflux causing the cough. However, he never has acid indigestion or pain after eating, so this diagnosis makes no sense to me. Regardless, he’s taking Prilosec twice a day now and giving it a month or two to see if his cough eases up. In the meantime, he’s worn out and exhausted, and the energy he’s used to having is just gone.
We’ve managed to do some very low-cost projects around the house, mainly painting, which actually has made a huge difference. All of the paint is paint we already had (some we bought last fall, some was from a huge batch of paint we bought at a thrift store and just stored in the garage in case we ever needed it). So we paint, take frequent breaks, and admire the work we do manage to get done. It can take us a month to get a room painted but eventually it gets done!
I also made notes of all the free entry days for the Chicago museums – most of them don’t do this over summer, but summer is nearly over and it might be nice to take advantage of free admission this fall if Dave happens to be feeling well enough that day. So we can still have fun on a bare bones budget…it just takes some planning.
For me, part of what threw my whole summer off was my daughter deciding she wanted to move to her dad’s. It’s been a rough adjustment for me, and just one of those things at the back of my mind that was bothering me. It left me feeling unsettled and just generally unhappy for a long, long time. I’m only now getting used to the thought of having an empty nest. But she wanted to go to school out there and was really miserable at her school here, so I finally gave her my blessing. I think I’ll feel more settled about it once she actually starts school out there and actually likes it. (She’s in her sophomore year now and starts at her new school at the end of August.) I’m hoping she doesn’t start at her new school and decide she hates that one as well!
My one year CI surgery anniversary came and went on July 22. My one year activation anniversary is just a week away, on August 20. I have my one year mapping (one year!) on August 21. I’m really curious to see what happens and how my tests come out.
Lately I don’t even put the volume anywhere near the 12 o’clock mark (which is 0, I guess, on the volume control). I keep it down between 9 and 10 o’clock usually. This has been bothering me a little, like I’m regressing or something. I feel like I should be needing MORE sound, not wanting less volume. But putting it up to 12 o’clock is just uncomfortable for me most days. I mentioned it to Dave and he thinks it’s a good sign, like my brain doesn’t need as much volume to hear now. I don’t know what to think, but I’m definitely going to mention it during my mapping.
I also have spent most of the summer with my CIs on the background noise reduction program, because we’ve been keeping fans going most days. The background program (as I call it) is awesome for killing the sound from the fans but letting me hear voices, TV, etc. just fine. It does change the quality of the sound a bit, and sound is softer on the background program, so if I switch up to my regular program then everything sounds super loud again. It’s weird, how I’m just not tolerating volume very well these days. Maybe I need to have them lessen the volume when I go for the next mapping.
A couple weeks ago I had another weird hearing event, same as the kind I mentioned in my “Sick Hearing” post. Everything got really echoey and sounded strange. I noticed it when we came back from grocery shopping one day. It lasted for about 2 days, gradually getting better each day, until things sounded normal again. All I can guess is that something changes my hearing – maybe some swelling, for whatever reason. Maybe barometric pressure…who knows?! If I had gotten sick (with a cold, for instance) it would have made perfect sense to notice changes in my hearing but the hearing change was the only physical symptom I had.
Sometimes I feel like the Queen of the Worst Case Scenario. Maybe it’s because I’ve had too much free time this summer, but I seem to be imagining all kinds of crazy scenarios and how I would deal with them. For instance, if we had some kind of catastrophic disaster, something that left us without electricity…eventually I wouldn’t be able to use my CIs. I’d be back to lip reading and total deafness, all the time. Of course, the chances of this happening are rather slim but it doesn’t stop me from periodically dwelling on how dependent I am on electricity to keep me hearing. It also just highlights the fact that a CI is not a cure for deafness…there IS no cure for deafness. I am still deaf, and I still tell people I’m deaf. I am really content with where I am at this stage of acceptance, though. If something happened and I couldn’t benefit from my CIs anymore, I could accept that. I kind of like being able to move from total silence to hearing with my CIs; sometimes it’s nice just to hear nothing, and then when I put my CIs on, the sound I hear is amazing and wonderful. It’s a little like the best of both worlds! I’ve noticed sometimes Dave will tell me he’ll wait til I put my CIs on to tell me something, but I always encourage him to just tell me. I can still lipread and communicate without my CIs on, and I like to keep those skills honed.
Another scenario I occasionally torture myself with is the one where something happens to Dave – this is probably because he’s been sick, and he’s a leukemia survivor, so I’m always aware that every day I get with him is a gift. So I freak myself out by imagining what would happen if he wasn’t here, and I was alone. Totally alone. I’ve actually never been totally alone before, because I was either married or had the kids here with me. Now the kids aren’t here and the thought of Dave not being here just freaks me right out. In this scenario, being deaf makes me feel really vulnerable and it’s not a feeling I like. It would probably be a little scary to go to sleep at night knowing I can’t hear if something happens, and there’s nobody there with me to alert me.
Moving on from the worst case scenarios that I really should not dwell on…another thing I meant to write about here is babies and toddlers that get CIs. This thought just came to me one day: I often fiddle with my volume and programs, based on how things sound to me. If I’m having a day where volume is overwhelming, it’s easy to turn down the sound. I can switch to the background noise program if the sound from the fans is overwhelming, or if I’m at the mall. I know that when I first wake up, sound is especially overwhelming after a night of silence…so I put my volume way down to begin with, and ease it up as the morning goes on and I get used to hearing again. But how do babies and really little kids deal with this, and how do their parents know? If anyone with a child with a CI is reading, I’d love to hear how it’s handled. Does the audiologist train the parents about that sort of thing? I mean, do they realize how overwhelming it is when you put the CI on for the first time each morning? I’m thinking mostly of pre-verbal kids and babies, who can’t communicate how things sound. I just find it really interesting! I can’t remember how I handled wearing a hearing aid as a kid, but I was 4 years old when I got it so I was able to tell my parents how things sounded.
Well, I’ve been writing while Dave was at the VA hospital for a checkup with his hematologist. He’s home now with the results of his latest tests. His pulmonary function test was fine; the CAT scan showed something and he can’t remember what it was called. All he remembers is “central” and “nodularity” and that the doctor stressed that it was mild. Since this doctor is the one who mostly deals with his blood work (which he gets frequently, because of the leukemia and bone marrow transplant he had in 1993) he didn’t know much about the pulmonary stuff. He sees the pulmonologist again on Sept. 11 and will find out more then, I imagine. I think he may have to get a bronchoscopy at that time too. Here’s hoping it’s something they can fix for him.
One year ago today I saw the doctor and it was confirmed: I was profoundly deaf in both ears. I consider yesterday, April 15, to actually be the ‘anniversary’ of my going deaf because I knew my hearing was totally gone on that day. I just happened to have the doctor appointment on the 16th.
You know that feeling of waiting for the other shoe to drop? Kind of a vague fear of a future catastrophe…not that you want it to happen, of course, but feeling like you just know it will happen someday? For me, it was going deaf. For 15 years I had this very repressed, subliminal fear that I would lose all of my hearing…and then what would I do?
Although I’ve lived with hearing loss pretty much all of my life, my hearing was stable from the time my loss was detected, at age 4, until 1993, when I was 28 years old. I was so used to it, and wore the same hearing aids for so many years, that I didn’t even really notice it. It never occurred to me that my hearing might get worse. We had no idea why I lost my hearing to begin with but it was assumed that it was from a high fever when I had roseola as a toddler. I figured it was a one-time shot and never gave it another thought.
Then in 1993 I suddenly lost the little bit of hearing I had left in my right ear. It was shocking and unexpected. Although I already had a severe-to-profound loss in that ear (so it wasn’t like I lost a ton of hearing) it was still an earth-shattering event for me because that was the ear in which I wore my hearing aid. My left ear was considered good enough, with a moderate loss, to not need amplification.
In one fell swoop I was faced with the fact that my hearing loss was possibly progressive and might get worse in the future, and dealing with suddenly only having one ear to hear with since I had no ear mold or hearing aid for my left ear. It took a good two weeks to get a new ear mold made for that ear and to be fitted for a completely new hearing aid, a bi-CROS system. During that two weeks I actually tried to squish the old ear mold into my left ear and wear my current hearing aid, so that I could hear at work and during social events. (I specifically remember a baby shower I attended for my cousin during that time, and how isolated I felt because I had no idea what anyone at my table was saying.)
Once I tried the new bi-CROS hearing aids, though, I was amazed. The transmitter I wore on my ‘dead’ right ear transmitted sounds via radio frequency over to the receiver I wore on my left ear. Once again I had the sensation of hearing from both ears, and my world normalized again.
The first couple of months after I lost my hearing the first time were scary for me because nobody could tell me why it had happened. I wasn’t sick and had no warning signs. They did a CAT scan and blood tests, tried me on a regimen of steroids to alleviate any possible swelling that would’ve caused the hearing loss…nothing worked and no causes were found.
After a couple of months passed and my hearing stayed the same, I stopped actively worrying that I would lose more hearing. The fear sank to the far recesses of my brain and remained there. Every now and then I would bring it out and toy with it: How would I deal with further hearing loss? Would I feel like life wasn’t worth living? Would I become bitter and nasty to my friends and family? Would I retreat and become a recluse?
At the time, I didn’t know anything about cochlear implants. I learned about them in the late 1990s and even then, it seemed like they were only an option for people with no hearing at all. From what I could tell, they would enable a profoundly deaf person to perhaps hear some loud environmental sounds but that was it.
Life went on and then the other shoe dropped.
In a way, there was a weird sort of relief that this had happened and I survived it better than I ever expected to. I look back and say, “Oh! I went deaf and actually dealt with it better than I thought I would.” It’s over now…I can’t get any more deaf than I am, right?
I do still have this little fear that something might happen to my implants so they don’t work anymore. Becoming deaf as an adult is totally different from growing up in a community of deaf people who use sign language. Since my world is a hearing world, I have to adapt to that. Dave and I have a version of sign language that we use and it works for us, but it’s not ASL. I can’t benefit from a sign language interpreter, for instance.
For now, all I can do is assume things will continue the way they are and my cochlear implants will continue to work for me.
So, life is slowly returning to normal. For a while there, it felt like I’d be in recovery from surgery forever. Like a new mom who feels she’ll never again sleep through the night, I felt like I would never again be able to walk down the hall at anything other than a slow shamble.
Well, I actually power-walked down the hall today. I even half-bent my head down to blow dry my hair after my shower! All these little things that are like mini victories…the first time I sneezed and it didn’t feel like my head was going to explode. The first day I only took one nap, and then…gasp…no nap at all! The first day I went without taking any Tylenol. Every day things slowly fall back into place.
I recognize the face in the mirror now; no more swelling. Even the sides of my head (where the implants are) are starting to go back to normal. I can turn my head a little faster, without worrying that it’s going to make my head spin.
The only real reminder that I’m still recovering, besides the glue and tightness by my incisions, is the fact that I’m still sleeping on the couch. I never did figure out how to keep myself from rolling to one side or the other in my bed. Abbie mentioned being able to sleep on her implanted side after 3 weeks, so I have hope that I’ll be back to my bed within a week or so. I think I’m just going to wait until I can comfortably sleep on my side before I do that.
Now that I’m not focusing constantly on recovering, my mind is starting to wander to the next big milestone…activation day. As strange as it sounds, considering that is the whole reason I went through this surgery, I just couldn’t even begin to think about the day they turn the implants on. It didn’t even matter to me – I just wanted to heal and feel like myself again. Now, though…I can’t help grinning a little every time I realize it’s only 2-1/2 more weeks!
Of course, as things always seem to go, there’s all kinds of drama involved with the day because it’s also the day we have to register Paige for freshman year of high school. This is a huge thing – the day she gets her schedule, her books, her locker assignment, and apparently a t-shirt and group assignment for the freshman orientation program that she has to attend the following day, August 21. I really wanted to be with her for this – we had planned to walk her schedule after we got her books so she can see where her classes are. The problem is that they scheduled her for the 12:00-12:20 slot. We have to leave at 12:00 to get to my activation appointment, which is at 1:00 (and will last for 3 hours).
We called the school, explained the situation (to two different people, in fact) and they refused to budge. So the next best thing is to have my mom take her. This means that neither my mom or Paige can come with to the activation, which was really disappointing for both of them. And I’m really disappointed that I have to miss her registration day. I do have a plan – I’m going to take her up at 11:30 and play dumb, like I didn’t realize we couldn’t go early. There’s a chance they might just pull her schedule and send us through the line. We won’t have time to walk to all of her classes like I’d like to, but at least I can help her through the book buying stuff.
I’ve been thinking about my attitude once I get activated. I know better than to get my hopes up, so I’m not expecting to understand speech right away. I know it just sounds like beeps or buzzing for a lot of people. I’m hoping that the novelty of hearing any sounds at all will be good enough for me. I just hope that I’m able to have a good attitude about how bad things will probably sound at first.
When my hearing aids would need repairs and I’d get a loaner, it used to drive me crazy. I would have to really concentrate on not snapping at people and just generally being crabby because everything sounded so bad and not like what I was used to. I like to think that having lost all of my hearing since that time would be enough to change my attitude. Instead of feeling entitled to hearing at a certain caliber, I hope that I’ll just be happy to hear at all. I know my brain needs time to learn how to hear with a CI, and the only way that will happen is for me to wear it all the time and practice. There’s no way for me to know ahead of time if I’m going to be gritting my teeth and thinking, “Argh! It’s driving me crazy!” while outwardly smiling and listening and trying to keep a good attitude.
So I wonder about that. I wonder if the external processors will hurt my ears at all or if it will just be like when I was wearing my hearing aids. When I tried them on during my CI assessment, they didn’t feel any heavier than hearing aids. Still though, I’ve heard a lot of people talk about them hurting or needing to use moleskin to make them more comfortable.
Besides the voices of my loved ones, one of the first sounds I can’t wait to hear is the meowing from my cats. They all have such different meows and I’m curious to see if I can detect that with my CI’s. I always joke that the cats are the easiest ones to lipread around here!
I can’t remember if I’ve talked about tinnitus yet. The first few days after the surgery, it sounded exactly like oil popping in a frying pan. It was actually not very loud the day I had the surgery, but either the next day or second day, it did get extremely loud. The super-loud tinnitus didn’t last for very long, not even a whole day. Then it really settled down. I’ve noticed I now get the tinnitus in both ears fairly equally; before, my left ear had constant tinnitus and my right ear (which has been totally deaf for 15 years) was just recently chiming in every now and then. So I have usually 3 or 4 different sounds going on in my head, from both ears, constantly. I don’t know why it doesn’t make me insane, to be honest. For some reason though, maybe because I’ve had tinnitus for as long as I can remember, I just don’t really get bothered by it. It’s just what I expect to have, I guess.
However, it really quieted down after the surgery. I realized that there were many times the tinnitus was so soft, just like a low humming, that it was almost as if it were gone. It’s the closest I’ve come to actual silence since I lost all of my hearing in April. Before, the tinnitus always went away as soon as I turned my hearing aids on. I’m wondering if that will be the case when I get my CI’s activated, or if the tinnitus will still be there. It will be kind of weird to try to listen to sound over the tinnitus, since that’s not something I ever really had to do. I’m used to just having tinnitus sounds and nothing else, or hearing regular sounds without tinnitus. Combining the two will be new for me.
That’s where my mind is wandering to these days. It’s a welcome change!
I spilled water all over my keyboard yesterday…augh!! (as Charlie Brown would say) I was using a medium-ish mirror propped up between my desk and Dave’s to keep an eye out for people coming up behind me. Every time the desks shifted, for whatever reason, the mirror would fall forward and knock over everything in front of it. (Usually my pen/pencil holder and a frame holding a small photo of Paige.) It was getting really annoying, happening more frequently, even though I’d try to wedge the mirror into the space between our desks so that it wouldn’t move.
Normally I keep my water glass on a coaster on the right side of my monitor. For some reason I just set it on the left side yesterday, and I was processing UPS labels for orders we were shipping. Out of nowhere…I mean, as far as I know, the desk didn’t move at all…but that darn mirror fell forward, knocked over the pen/pencil holder and the frame, which fell into my water glass and BAM…all over the keyboard, all over the floor (which is the fake wood stuff that locks in like puzzle pieces…not entirely waterproof!) I was horrified. On the one hand, the glass was only about 1/3 full. On the other hand, it’s still a LOT of water and it all went straight into my beloved keyboard.
I jumped up, screaming and swearing, holding the keyboard upside down while water literally gushed out. I was frozen in place, not sure what to do first…where do I set the keyboard, since it’s connected with a wire and all available surfaces are drenched in water? (If it had been wireless I could’ve run over and set it in the sink or something.) I knew if I didn’t get the water on the floor mopped up, it could be a disaster and make the flooring swell and pucker up. Dave heard me screaming (LOL) so he flew up the stairs and into action. We got everything dried off and he took my keyboard down to the workshop, to try to dry it out and salvage it. Unfortunately, although it did work when we reconnected it, some of the keys were doing crazy things…the shift key and function keys would make all kinds of windows pop up. So I switched to one of the basic old keyboards we had lying around the house…what a difference!
This keyboard was a Christmas gift to me from Dave, since I have carpal tunnel syndrome. It’s the only one that really keeps my hands in a good position and keeps the pain at bay. (It’s a Microsoft Natural Ergonomic Keyboard 4000) It looks like a mountain – raised up in the middle and sloping down on either end – and I love it!! I was actually having a hard time typing on the regular keyboard; I had no idea I was so used to this one. Dave went out and bought me another one today – what a sweetie! Money is sooo tight right now so I never would have bought one for myself, but he insisted it was a medical necessity.
In addition, he bought round mirrors (I think they’re meant for cars) that stick on, and we’ve got them positioned around my monitor. Now I can view the comings and goings behind me in 3 different directions, and the mirrors don’t fall down! I love it!!
I’ve been thinking a lot about the things I’ve gotten used to as an adult with hearing loss, mainly lipreading and closed captioning. I’ve become active on some forums and mailing lists for people with cochlear implants, and I noticed that a lot of times people will mention that they no longer lipread or need captioning once they get their CI. For some reason, the thought of not lipreading or using captions kind of panics me. Isn’t that weird? I mean, if I don’t need it then it’s not like I’m being deprived of anything. But I really can’t imagine not using the captions/subtitles when I watch a movie or TV show, and I can’t imagine not lipreading when someone talks to me.
The lipreading thing is probably something I’ll always do, just because it’s how I’m used to communicating. It would be nice if I didn’t have to lipread to understand, but if a person is facing me when they speak, I’ll probably always read their lips as well as listen to them.
The captions though…man. Even if I can hear better with CI’s than I can with hearing aids, I think I’ll still use captions and subtitles. I spent so many frustrating years watching TV and only understanding a small portion of what was going on. I’d get a few words here and there and figure out the story from what was happening on screen, but a lot of the really funny stuff flew by me. When captioning started being offered on more movies and shows, and we got a TV that had captioning built in (probably in the early 1990’s or so – I think it was around the time Paige was born in 1994) it just opened up a whole new world to me. I re-watched so many movies that I had originally seen without captions, and it was like seeing them for the first time! For example, I saw The Breakfast Club over and over again (without captions) and never knew that Anthony Michael Hall’s character wanted to get a fake ID so he could vote. LOL! 8)
Anyway, Dave relies on captions as much as I do, so even if I can suddenly hear everything we would still use captions for his sake. Ironically though, the kids have perfect hearing and they always turn on captions too. Eric said he prefers them, and this kid has supersonic hearing! It’s pretty much all they remember though – captions have always been on the screen when we watch TV. I even think it’s helped them learn how to read!
It’s funny though, how nervous it makes me feel to think of going without these things that have helped me for so long, even if I end up not really needing them. I actually feel defensive about it, even though there’s no reason for me to.
Quickly changing the subject but still sort of related to what I was saying before… my mom has super-high expectations for the CI and that’s another thing I’m kind of worried about. She keeps saying things like “Oh, you won’t need that anymore” or “You won’t have to worry about that anymore” when we talk about learning sign language or cued speech, or having to lipread all the time. She’s talked to a couple of people who know people who got CI’s and she’s hearing all these amazing stories about how the people hear better now than they did with hearing aids. She really feels that this is going to “cure” my deafness and I know she really thinks I’m going to be activated and hear perfectly. I’ve told her over and over that it doesn’t work that way, that I’ll always be deaf, but she still says this kind of thing.
It is putting so much pressure on me, which is making me a little defensive. I know she just wants me to be able to hear, and I can understand that. I know she means well and she loves me. But oh my gosh, I can’t stand to think of the disappointment she’ll have if it’s not the way she expects it to be. Even if I do end up with awesome hearing right off the bat (which I absolutely, truly do not expect) then how is she going to deal with it if I still need to lipread and have captions or if my hearing declines someday for whatever reason?
It’s kind of ridiculous…I’m almost 44 and she’s 70 and I’m still worried about disappointing my mom. I know all that really matters is how I deal with things and my own personal attitude about it. It just kind of drives me crazy that she wants me to be something other than what I am. I know she feels like life is not “normal” now that I’m deaf, and she’s said more than once that she can’t wait for me to get the CI’s so things can go back to normal again. I know she has problems with anxiety and it’s her thing to deal with, not mine. I guess I must feel guilty for stressing her out.
Hmmm. Who needs therapy when you can write it all down and figure things out for free?!
Now, seriously here, I am not that stressed out or anything. I’m actually in a really good mood right now. I just tend to get introspective when I’m writing and I think it comes off a little more intense than I mean for it to.
So at this time, one week from now, I should be home from the hospital and the surgery will be behind me! (It’s 10:40 pm right now) I’m slowly working my way through all the stuff I want to finish before the Big Day. I’m going to get all the bills paid before I go in, since I’m the one in charge of that. Paige got her physical and that’s all taken care of.
BUT…I can’t drop her high school registration papers off because I still don’t have them! The school sent a registration packet but all the information was for some other kid. I emailed them on July 5 to let them know, and the Asst. Principal replied at 7 am on Monday, July 7, to say the correct papers were being mailed “immediately”. It’s July 15 now and I still don’t have them…it takes one day for mail from the school to reach our house. Since I want to have the papers filled out and dropped off along with the payment before I have the surgery, I’m getting a little concerned.
That’s my project for tomorrow – go to the school and just pick up the right papers from them. I think I want to pick up a different shirt to wear on surgery day too. The one from Salvation Army fits but it’s a little too snug and short for comfort. I like to wear everything loose and long…I know it makes me look fatter but I really can’t stand it when my shirt constricts me.
We were going to watch a documentary called “King Corn” tonight – we are huge fans of documentaries here and I always check to make sure they’re subtitled or captioned. (Because they’re usually low-budget productions, a lot of times they aren’t captioned.) I found a website that said it was captioned so we went ahead and rented it from Blockbuster Online…but it wasn’t captioned after all. Darn! (This is not to be confused with the documentary “King of Kong”…which is captioned and is really good, BTW!)
Hey, on a final note…I did eventually get those items I requested on loan from the Illinois Assistive Technology Project! I think my request must have gotten set aside or misplaced for a month or two, but the items did come last week. It was really helpful to get a chance to see them and see how they work so we could make well-informed purchase decisions.
Dave came home with all kinds of weird stuff (foam noodles for the pool we don’t have, for instance) so I think he’s getting ready to concoct some kind of crazy bed thingy for my recovery period. He loves this kind of thing! I have no idea what he’s going to do but I’m sure it will be interesting.
Surgery is just a little over a week away. People are starting to ask me if I’m excited or nervous. To be honest, I hadn’t been thinking much about the actual surgery. At this point I’m more focused on trying to get things finished up before surgery day rolls around…I’m paranoid that I’m going to be really knocked on my feet for a week or more, so I’m trying to get as much done before surgery as I can. Focusing on this stuff has pretty much made me forget I’m even having surgery soon!
I’ve been trying to get as much stuff together for Eric’s move to a dorm (next month) as I can. We’ve been going through the stuff in his room together, since organization is not his strong suit, and throwing a lot of stuff out, setting other stuff aside for him to sell at Half Price Books, etc. I’ve got Paige’s appointment for her school physical coming up on Tuesday. I have to drop off papers for a property tax exemption this week, and get to the store to buy a big pillow to use during my recovery period. After I use it, I’ll send it with Eric to his dorm. And of course, finishing up the orders we get throughout the week. We’ll be closing as of Friday, which is also making me nervous. Since that’s my only job, not taking in any money from the candle business until we reopen is going to be pretty stressful. All I can do is hope that I recover quickly enough to reopen soon!
But yeah, it’s getting closer and I’m starting to think a little more about going under the knife. Surgery itself doesn’t bother me too much since I’ve been through it a couple times before. I know that I’ll be nervous, then I’ll wake up and it will be over. It’s the waking up part that makes me most nervous. I’m hoping they give me something to prevent nausea from the anesthesia, since I know it’s made me sick in the past. (After the first surgery I had, to remove impacted wisdom teeth, I always made sure to mention that anesthesia makes me wake up sick to my stomach. After that, it’s always been fine so I know that “anti nausea” stuff does work!)
I worry about feeling so bad and out of it that I won’t want to leave the hospital. That’s what happened after the dental surgery. They kinda had to kick me out of recovery…otherwise I would’ve stayed there all day, in a nauseated daze. The last thing I want to do is spend the night in the hospital so I warned Dave that I might put on a brave face and then kind of collapse in the car, just to get my butt out of there. I’ve done that before with blood draws – I feel like I’m going to faint but I smile and walk out to the car with tunnel vision, and then I collapse on the seat. I’m fine once I put the seat back and just lay there for a while.
I’ve got to figure out something to do with my glasses so I can put them on when I wake up in recovery. Unless I’m feeling really awesome and can just put in my contacts (which I highly doubt), I’ll have to find a way to wear my glasses with both of the arms removed. Abbie suggested a chain or lanyard on my glasses that I can drape over my “head bra” (LOL!) and that sounds like the perfect solution, so that’s another thing I need to work on this week. I only wear my glasses when I first wake up and for about 30 minutes before I go to sleep, so once I get home I can switch back to contact lenses.
I do worry about big surgical complications like my facial nerves being cut or damaged, but I try not to dwell on that kind of thing. I think my biggest concern is my sense of taste being affected. I know this is a really common complication or side effect of CI surgery, so I kind of expect it to happen. Since I’m having both ears done at once, if my taste nerves are cut or affected then it will affect my whole tongue versus just one side. I can’t imagine either not being able to taste anything at all, or having everything taste metallic or the opposite from what I expect it to. I love food (a little too much…ha ha!) and I don’t eat out of boredom or stress. When I eat (and overeat) it’s because I really enjoy the way something tastes. It’s going to be really strange to give up that pleasure if my taste nerves are cut, so I’m a little concerned about that. Then again, if I eat less I might lose weight, which wouldn’t be a bad thing.
The only other thing I kind of expect to happen, and I’m dreading, is getting vertigo or dizziness. I don’t have much of a problem with that, but I’ve had a couple of experiences with vertigo in the past (usually connected to a cold or ear infection) and oh my gosh. It’s really miserable! So I’m really hoping the vertigo and dizziness isn’t too bad during recovery.
On a totally unrelated note, we watched the final Summerfest fireworks display from our deck tonight. Since we were outside watching, I could feel the deck shaking when the bigger fireworks went off. It was a perfect night – no bugs, a light breeze, it had cooled off (almost to the point where I could’ve used a light jacket and long pants, instead of shorts and a t-shirt). The fireworks went on for about 30 minutes and were absolutely spectacular! The really cool thing was for the super loud ones (the ones that set off car alarms), I think I was hearing them a little bit! At first I wasn’t sure, and I thought I was just feeling the vibration, but after a couple of the big ones I could definitely tell I was hearing them just a little bit. It was so weird to actually be hearing something other than tinnitus. In fact, I realized my tinnitus had quieted WAY down for a little bit, when I was concentrating so hard on hearing the loud fireworks. Of course, then when I realized that and started thinking about the tinnitus it came back again. Still though, it was a really enjoyable fireworks display and a beautiful way to cap off the evening.
I have a tendency to worry about things, especially events where I have no idea what’s going to happen. I’m sure part of this is just my personality, but I think part of it comes from growing up with a hearing loss. I learned the hard way that arriving in a situation unprepared for what might happen was twice as difficult for me to navigate as it would be for a hearing person. If I wasn’t sure where I was supposed to go or what I was supposed to do, I would have to ask somebody. If I was lucky, I would actually be able to hear and understand the instructions I was given. What usually happened was that I’d ask, be given an answer that either I couldn’t hear at all or heard part of, and then one of two things would happen: I’d go off in the wrong direction, looking like an idiot, or I’d ask for the information to be repeated, and not hear it again the second time. THEN I’d go off in the wrong direction, too embarrassed to ask for a third repeat.
So I started planning things as much as possible. I’d try to find out as much information as I could to eliminate as much of the unknown as possible. This works fine for certain situations, especially now that the internet is here with so much information at our fingertips. For other things, there’s no possible way to know how things are going to go, so I just worry…usually for no good reason.
One of the things I was really worrying about was this surprise birthday party for my mom, which was held the last Saturday of June. My brother came up with the idea and my first reaction was one of total dread. I really dislike parties, partly because it’s so hard to hear but also because I have a hard time with small talk. I’m fine if I get into a long conversation with one person but flitting from person to person, making small talk for 10 minutes or so each time? Can’t do it. I sit in a corner and people-watch instead.
Usually I just avoid parties, and now that I don’t work outside the home it’s much easier to be a hermit. I don’t get invited to work events (company Christmas parties, picnics, wedding and baby showers for co-workers, meeting after work at a bar, etc.) so I don’t need to constantly come up with excuses. Now that I’m older, the family events are fewer and fewer, as all of my cousins got married and the required showers and weddings are now far in the past. Small get togethers are fine and I enjoy those, but it’s rare for me to be invited to a party these days.
Well, I couldn’t very well bow out of this party, so instead I worried. This would be the first major event I’d be attending as a completely deaf person. I didn’t know for sure who knew about my recent deafness, although I assumed it would be everyone in attendance since my mom keeps in touch with all our extended family members by phone. To give myself an emergency exit, I warned my brother ahead of time that lipreading for an extended period really wore me out, so I might only stay for an hour or so.
I knew my reaction was really silly – of all the things to worry about! The worst that could happen would be that I’d sit by myself for a few hours, which isn’t a big deal. By the time the actual party day rolled around, I had kind of calmed myself down – playing the “What’s the worst that could happen?” game usually has that effect on me and helps me to see that some things just aren’t worth the time it takes to worry about them.
I’m happy to report that this event was one of those “not worth worrying about” things. The party started very small, just me, my brother, his wife and her family. This was actually great for me because I wasn’t plunged into a sea of people and faces, trying to lipread everyone at once. People came by gradually throughout the afternoon, and I worked out a good system of sitting near the front door so that I could welcome people right away. It gave me a chance to see them on their own, not surrounded by a bunch of other people, and lipreading was easy since it was the usual “Hi, how are you” kind of thing you say when you first see someone.
I was able to focus on and lipread people pretty well. Much of the time I wasn’t involved in one-on-one conversations but rather observing a conversation between people I was sitting or standing near. This took the weight off me because if I didn’t catch everything, there was no embarrassment. But if I did catch a few things being said, I could interject and join the conversation briefly.
As more and more people arrived, I pretty much stayed in one place, sitting with Dave. People would get up and leave and new people would join us, so we weren’t isolated but we also weren’t in the main group of people. One thing that was hard to judge was how loud I should talk. I had no idea if there was music or sound from the TV, or how loud the background noise of people talking really was. Since Dave has trouble hearing in those situations, I tried to talk louder for him.
I noticed that I didn’t have any extra trouble understanding my brother’s in-laws, which was a nice surprise. They’re from Poland and his wife’s parents have accents; his wife and her older sister have slight accents but I never had trouble understanding them. I always feel terrible when I can’t understand people who speak with an accent – it’s more related to my hearing loss than their inability to speak clearly, but I feel like they think it’s because of the way they speak. I have total admiration for them, learning a new language and becoming fluent in it…I certainly couldn’t do it! So I really do feel badly when they talk to me and I struggle to understand them. Well, for whatever reason, lipreading them was not a problem. I think I actually understood them better at this party than I ever have!
We ended up staying for 4-1/2 hours, and really having a nice time. I’m glad I force myself to do things that make me nervous – they don’t always work out well, but when they do it just gives me more proof that some things are just not worth worrying about. Maybe someday I’ll be totally calm and worry-free!