Monthly Archives: May 2008
…so, I’m 28 and I’ve just lost the hearing in my right ear. Up until this point, my only accommodation had been amplified handsets for the telephone. With lip reading and my hearing aid in my right ear, I felt like I heard really well. I still missed a lot on the TV (captioning wasn’t an option that I knew about at this time, back in the very early 90s) but I turned the volume up and managed pretty well.
There was a 2 week period while I waited for a new ear mold to be made for my left ear, and during that 2 weeks I really floundered. I actually wedged the ear mold for my right ear into my left ear and wore my hearing aid that way, for as long as I could stand it each day. I never missed a day of work and didn’t miss any social events scheduled for that time. (I especially remember going to a shower…wedding, baby?…for one of my cousins at that time, and how awful it was to try to talk to everyone when I could barely hear.) I was so, so depressed and terrified. My husband at the time (Dave is my second husband) was as supportive as he could be, but he was at a loss to console me. What freaked me out even more was his response when I asked if he would take sign language classes with me. I assumed that if I was going to lose my hearing I would have to know sign language, and none of the doctors could tell me if I would keep losing more hearing. So this was the next logical step to me. Except my (ex) husband told me he didn’t think he could learn. He pretty much told me that it would be too hard for him and he wouldn’t do it. I was absolutely distraught – it made me feel like eventually I would be all alone with no way to communicate with anyone and nobody around me who was willing to make the effort for me. My son was only 2-1/2 years old at the time (my daughter wasn’t even born yet) and I was so sad, thinking I might never hear his voice as he grew up and his voice became more mature.
Once my bi-CROS hearing aids came in, though, life pretty much went back to normal. I wore the hearing aid in my left ear and the “receiver” in my right ear. I actually felt like I heard better with the bi-CROS aids because they gave the illusion of hearing from both ears. My hearing didn’t get worse and eventually, as the months passed and I stopped worrying, things settled back into their usual routine. It had been horrifying but losing the hearing in my right ear was a manageable event. I never did take sign language classes and I was able to hear all the things I used to be able to hear…it was just quieter once I took my hearing aids out for the evening.
My then-husband and I split up in 1996, when Eric was 6 and Paige was 2. I had been a stay-at-home mom for the past 2 years so it was a big adjustment, finding full time work and being a single mom with a hearing loss. I was happy though, finding out that I could absolutely do this and not depend on anyone. Even with all the stress involved, it was a really empowering time in my life. The job I got, as an administrative assistant in the Human Resources department of a local company, was fun but involved a lot more phone work than I was comfortable with. In fact, I had to cover the switchboard quite often, and that was incredibly stressful. However, my boss made it clear that in order to take the job, I had to cover the switchboard…so I agreed to give it a try. I had an extra amplifier and managed to get by. The hardest times were when people with accents called in, and this happened a lot because the company was originally based in Germany so many of the callers were from Germany. I’ll admit that a few times I switched people to a random department after a few fruitless moments of trying to understand them…I figured that whomever I switched them over to could probably understand them better than I did and could redirect the call to the proper place. :-0
I started that job in early 1997 and things were going merrily along until September of that year. I managed to get an infection in my outer ear (probably from scratching it, due to the ear mold making my ear itchy) – my left ear, the one that still had hearing. It was the most painful, awful thing I’d ever experienced, and the first time I’d ever had an infection like this. I was running a high fever and the pain in my ear was indescribable. I went to a walk-in clinic and they made it worse by forcing water into my ear canal to try to clean out ear wax (which they were never able to remove, by the way). I had to make an appointment at the Chicago Otology Group (now called the Ear Institute of Chicago), the people who had treated my sudden hearing loss back in 1993. They placed cotton soaked in antibiotics deep into my ear, prescribed drops and painkillers, and used a vacuum “thingy” to clean out the pus and wax in my ear. Once I started seeing them, the infection finally began to clear up. However, it was at least a week or more before I could wear my hearing aid.
During this period, I was completely deaf. I couldn’t hear the alarm to wake up in the morning, I couldn’t hear my kids, and I certainly couldn’t go to work and do my job. My ex husband stepped in and helped me out by making the doctor appointments and communicating with the doctor’s office – he arranged for me to get a vibrating alarm clock with a bed shaker, something I never knew existed before. My parents took my kids when I was in so much pain that I was pretty much unable to do anything but take painkillers and cry. It was really frightening and humbling to realize I wasn’t as self-sufficient as I thought I was.
Once things stabilized a bit, I realized it was just ridiculous…I needed a support group. I needed to acknowledge how much my hearing loss impacted my life, and I wanted to talk to other people who knew what it was like to live with hearing loss. The vibrating alarm clock was a total eye-opener for me and I wondered what other tools and accommodations were available to me that I had no idea existed. I was done trying to pretend I was exactly like everyone else. I don’t think a hearing loss means there’s something wrong with me, but geez, I obviously need some help that most people don’t. And I really don’t think there’s anything wrong in admitting that. For me, anyway, it’s taken a huge weight off my shoulders and relieved a lot of stress. These accommodations make my life so much easier, and I no longer want to pretend I don’t need them!
The first thing I did was turn to the internet. I’d been online since 1992 or 1993 or so, and had found support groups for other things I was interested in so I figured there must be groups out there for people with hearing loss.
I joined 2 or 3 mailing lists and ended up sticking with one, the Say What Club. A couple of the lists were actually newsgroups. This was the first time I was exposed to the difference between deaf, culturally Deaf, hard of hearing and late-deafened adults. The way I always thought of it (and still do), if someone says they are deaf then it means they can’t hear anything. If they can hear something, even a little bit, then they are hard of hearing. I didn’t know anything at all about Deaf Culture. Well, in these mailing lists I came across all kinds of people that identified themselves as deaf and then would mention being able to hear, albeit not very well. I thought, “Hmmm…maybe I’m identifying myself wrong. I should tell people that I’m deaf.” It’s easier to say, after all…less words, less stumbling over “hearing impaired” or “hard of hearing”. (I use both terms equally, to be honest – I know some people hate the word ‘impaired’ but it always described my hearing, which was definitely impaired, so I didn’t have a problem with it.)
I noticed a big change in people if I told them I was deaf. They’d look really nervous, and if I was with someone else, they would turn to that person and start talking. Everyone assumed that I could not hear at all, and that they couldn’t communicate with me since they didn’t know sign language. (It was also assumed that if I was deaf, then I knew sign language…like it’s something you learn automatically, by osmosis, as soon as your hearing goes.)
So I went back to identifying myself as HOH, and stopped assuming that if someone said they were deaf that it meant they couldn’t hear at all. This still puzzles me sometimes though. Now I tend to identify myself as ‘profoundly deaf’, meaning my loss is at a profound level and I can’t hear anything. I mean, I don’t hear jet engines, I don’t hear ANY loud noise at all. But I keep running across people who say they have a profound loss and then mention things that they can hear or that they hear certain things with a strong hearing aid. It blows my mind. Even with the strongest hearing aids they make, I don’t hear anything. How is it that these other people with a profound hearing loss can hear things? I mentioned this to Dave and he reminded me that there are different frequencies involved in hearing loss, which I’d forgotten about. I guess what I’m trying to say, though, is it’s really hard to convey, even to someone who also has a hearing loss, what degree of loss you have with just a word or two. All of the losses are so unique!
Anyway, back to the lists. I joined SWC and told everyone my story of my recent ear infection, being temporarily deaf and how it scared me. I mentioned wanting to learn sign language on my own, and just wanting to connect with people who understand. This list really opened my eyes and introduced me to some wonderful people. I didn’t feel alone anymore. I realized how many things I do…the way I react in certain situations, things I try to avoid, etc. were due to being HOH. It was wonderful to share with other people and find out I wasn’t the only one doing these things, like paying with a $20 bill at a drive-through because you have NO idea what the total was but you know a $20 will definitely cover it.
One of the first people to welcome me to the list was Dave. He sent me a huge box of sign language books and videos, since he used to teach a casual sign language class years back, before he ever lost his hearing (ironically). As 1997 came to a close, we became better friends and I really enjoyed emailing him. Originally I thought he was much, much older than me because he always called me “kid” and made references to his advancing age. I figured he was in his 60s or so. As 1998 rolled in, I finally saw a picture of him and realized he was in his 40s (I was in my 30s) and hey…he’s cute!
We met in person in March of 1998 and started a long-distance relationship. It took a while to get off the ground – when he started to become interested in me (before we met in person), I told him not to expect too much because internet relationships are hard to convert into “real life” relationships. You build this person up in your mind and then when you meet them in person, it rarely compares favorably to the person you had imagined. Even before that, originally Dave wasn’t interested in starting any relationships because he’d survived leukemia and a bone marrow transplant (which is how he lost his hearing) and felt like he couldn’t guarantee he’d be around long enough to see a relationship through. He told me this back when we were just buddies and I told him that was nuts…if he met the right person, he should go for it. So what if he might only be around for another couple of years…why not make them great years with someone you love? None of us has any guarantee as to how long we’ll be here on earth, anyway!
I guess I convinced him pretty well because he turned out to be my “right person” and I was his. I’ll go more into detail about our story in a future post, but to make a long story short, we got married in 2002 and celebrated 10 years together earlier this year. Every single day, and I mean this in all seriousness, I wake up and feel like I’ve been given a gift to see him lying next to me. I enjoy every second of every day with him, and we are together 24/7 (literally) so that’s a lot of time! In all these years I’ve never felt like I needed a break or didn’t enjoy my time with Dave. He’s my best friend and I’m still amazed that we were lucky enough to find each other!
Once I met other people with varying degrees of hearing loss, I finally felt at home with myself. I have absolutely no problem letting somebody know I can’t hear them – it’s not always the easiest thing to bring up, and usually I don’t mention it in quick, casual encounters. But if I miss something, or mis-hear something, I just tell the person I didn’t hear them. Now it’s different, since I don’t hear at all, but in the past I’d move my hair away from my ears to show them my hearing aids. I’d get a lot of comments like, “I had no idea – you don’t sound like you have a hearing loss!” I’m still trying to be very careful with my enunciation now that I can’t hear myself talk. My family’s told me that I’m talking louder now but other than that, I still sound the same.
When I started researching CI’s, my first instinct was to get a color that blends in with my hair. My mom was quick to tell me that I can hide the CI’s with my hair and nobody will ever see. But you know, I think I’m more apt to let the headpiece show. It’s not something I want to hide, and I definitely wouldn’t be ashamed of it. What a difference in attitude!
Looking back, I really wonder what kind of person I’d be now if I’d gotten more help when I was a child. And I don’t mean that I blame my parents for anything, because I don’t think I turned out all that bad. I just mean, maybe I would have been less fearful and shy. I hated new situations and always wanted to know exactly what was going to happen, because I didn’t feel like I could ask for help if I needed it. I wonder if I would have tried more things and been more confident.
I’m not sure what type of ‘help’ I’m even talking about, or if I just mean acknowledging that I was struggling and needed help hearing/understanding in certain situations. I think I’ve been dwelling on this after reading all the stories of children with hearing loss lately. Things have come such a long, long way since the early 60’s and it’s really great seeing all the options available to parents and their children now. I think it’s wonderful that no matter what route they choose, these parents and kids can have a support group and not feel so alone.
I was trying to come up with a clever way to end this post but I can’t think of anything, other than that I’m glad I’m not alone. It’s not eloquent, but it’s true.
I’ve been making my way through all the books about CI’s that I can get my hands on. Between all of this reading, my visits to message boards and daily messages that come from email lists I belong to, it makes me feel like I’m surrounded by CI users. I told Dave that I keep expecting to turn around and see someone with a CI walking down the street…like they should be everywhere I turn!
The most recent book I finished was Bridge to Sound With a ‘Bionic’ Ear, which is actually a compilation of individual stories rather than one long story focusing on one person. It was really interesting to read various accounts of how people came to choose a CI, how they lived with hearing loss, and how they felt about their CI after they got it.
I noticed that the parents of children who received a CI talked more about the controversy surrounding cochlear implants. Many of them did extensive research and had to make a decision about how to deal with their child’s deafness – teach them ASL, go the verbal/oral route, etc. They spent more time in their essays defending their choice of a CI for their child, whereas the adults who told their stories only mentioned the controversy aspect a few times. I really feel for people who have to make this decision and add it to the list of things you have to worry about as far as your kids go. There are already so many battlegrounds where raising kids are concerned: breast or bottle, stay at home full time or work, circumcision or not, family bed or crib, spanking or time out, cloth diapers or plastic…etc. etc.
It made me think about how I was raised and how my hearing loss was dealt with when I was younger. My hearing loss wasn’t discovered until I was 4 years old or so (I noticed this was a common theme in the book as well, in the stories shared by the adults with hearing loss). Nobody ever figured out exactly when or why I lost my hearing, but I was hospitalized when I was a toddler — I had roseola and a really, really high fever (106 or 107). My mom always assumed it was from the fever. However, there are family members with hearing loss on both sides of my family so it’s really possible that it’s genetic.
In any case, apparently I had been reading lips well enough to fool everyone for a while. My mom said she finally realized I wasn’t hearing her one day when my little brother and I were out in the backyard on the swing set. She called us in for lunch and only my brother came in…I was still out there, swinging on my swing. She realized that I would come in if I saw my brother coming towards the house, but otherwise I didn’t respond. She knew it wasn’t a case of me being disobedient because come on…it’s lunch time! What little kid isn’t going to come in for lunch?! So she did her own little tests and realized I wasn’t hearing her.
I do remember going for many, many tests at Northwestern University in Evanston. This is a pretty far drive from my childhood home (at least an hour one way) so my mom spent a lot of time taking me back and forth for hearing tests and various intelligence tests, to determine whether I should be mainstreamed in school or go to a special school. She was really proud of the fact that I did well on the intelligence tests and went to the local public schools with no special ed classes. I was fitted with a hearing aid for my right ear (which had a severe loss; my left ear had a moderate loss) and as far as I was concerned, it was just a part of me. I never fought my hearing aid or was bothered by it.
In school, I wasn’t teased because of my hearing aid. To be honest, most people probably didn’t notice it because I have long, thick, curly hair and rarely wear my hair up so it always covered my hearing aid. I got more grief for wearing glasses than I ever did for wearing a hearing aid! The only time I can remember kids being kind of shitty about it was when I was around 7 or 8. I was at the local playground and some kids I didn’t know saw my hearing aid when I was hanging upside down on the monkey bars. They started to taunt me and I told them it was a special tape recorder that could record their thoughts. That completely freaked them out and they left me alone after that. (Luckily they were young enough to believe something so ridiculous!)
In high school, as I started being more social and going to parties, I found out that a lot of people originally thought I was stuck up or a bitch because I’d ignore them if they said “Hi” when we passed in the halls. I realized it was kind of a detriment that so many people didn’t realize I had a hearing loss. I found out later that a lot of people assumed I was a burnout (our term for people who smoked pot…this was the late 70s, very early 80s…I graduated in 1982). They’d see me at parties sitting by myself, kind of staring off into space, and assumed I was high. The really hilarious thing is that I found this out when someone passed me a joint and I declined. They seemed stunned when I explained that I didn’t smoke pot, and that’s how I found out that everyone assumed I was a burnout. We got a good laugh out of it when I told them that no, I just did that because I can never hear at parties so I used to just sit back and watch people or listen to the loud, thumping music.
School itself was stressful for me, but I did well and got As and Bs. I’m not sure if my mom ever mentioned my hearing loss to my teachers (I think she did) but the only real accommodation that I got was being seated in the front of the class. Since I also wore glasses by the time I was 9 or 10, I’m not sure if this ‘front of the class’ thing was due to my vision or my hearing loss, to be honest. I was one of those goody-two-shoes kids that the teachers loved, because I never talked in class (I couldn’t hear whispering so I never encouraged it from people). I was always reading. I did all right as long as the teacher didn’t walk around and talk, or talk while they wrote on the blackboard.
I can remember doing a lot of exercises where we had to listen to a cassette tape and then do corresponding worksheets…those were always hell for me. Same with movies, which I just couldn’t understand (no lips to read). Somehow I managed, though. Teachers would always say that I needed to participate more in class discussions, but that was impossible for me since I couldn’t hear what the other kids’ comments and/or questions were. I was always the quiet kid.
Although I always did well in school and could easily have gotten into college, it was so much work to understand everything that the last thing I wanted to do was continue with school. The only field I was really interested in was psychology (I still am, actually) and I couldn’t imagine being a psychologist that couldn’t hear her patients! I had no idea if there were any accommodations available to me in college, because the way I was raised, my hearing loss wasn’t an issue. I had no idea there were any accommodations for a hearing loss, beyond my hearing aid and an amplified handset for my phone.
I distinctly remember my mom having a talk with me when I was young, although I can’t remember how old I was. She told me in no uncertain terms that there was nothing wrong with me, and that I should never feel like I was ‘impaired’ because of my hearing loss. I would get no special treatment, because I didn’t need it. In her view, my hearing aid corrected my hearing loss the same way my glasses corrected my vision.
I can see now the benefits and pitfalls of being raised this way. On the one hand, I never dwelled on my hearing loss and never thought I couldn’t do something because of it. (Although, instinctively, I shied away from situations that are hard for people with hearing loss…for instance, as a teenager looking for my first job or two, I never considered being a waitress because I knew I’d have problems due to my hearing.) I know it helped my mom deal with what must have been devastating news – feeling like the hearing aid corrected my hearing loss 100% made her feel like I was ‘normal’ again and just like every other kid. Plus, how was she to know any different? I was too little to explain that hearing through a hearing aid isn’t like natural hearing and it doesn’t get corrected the way vision gets corrected from glasses.
I lived this way until I lost more of my hearing when I was 28. I knew I was always stressed out and a “nervous” person, but I figured it was just my personality. (Now I realize it was actually from worrying about being put in a situation where I couldn’t hear well.) People gave me a hard time for being quiet and not talking more in groups, for not liking parties or going out to bars and dance clubs. I refused to ask for directions (I couldn’t hear the answer and would look like an idiot if I walked or drove off in the opposite direction from what I’d been told). All these little things I never, ever attributed to my hearing loss because it just never occurred to me that it would affect me. It’s amazing to me now when I look back at my life and see how much my hearing loss affected it.
When I lost the rest of the hearing in my right ear, it shattered me. I was absolutely devastated and terrified. For nearly 30 years my hearing had been stable. It had gotten a little worse over the years (my left ear now had a moderate-to-severe loss) but nothing major. I upgraded my hearing aid every 10 years or so and that was about it. When I went completely deaf in my right ear, I had no hearing aid to fall back on. I could still hear a little bit without hearing aids but fear of the unknown was the biggest factor. Why had this happened? Would it keep going and would I lose all of my hearing over the next couple of days? Or would it happen again in a year or two? How would I function?!
…This is getting very, very long so I’m going to finish this up in a day or two. It’s the second half of my story, where I discovered accommodations and learned to be up-front about my hearing loss with people….how that changed my life and my attitude.
Conversation between me and Eric this morning:
Me: What kind of cake do you want? (Side note: His 18th birthday is this coming Tuesday)
Eric: The cake is a lie.
Me: The cake is alive?
Eric: (cracking up) GAWD, mom, what are you, DEAF?
(both of us laughing)
Me: Portal! (wondering what this has to do with birthday cake)
Eric: Yes! The cake is a lie!
He then goes on to explain that it’s a video game and apparently they offer you cake and then instead of giving it to you, they kill you. Or set you on fire.
It took a while, but I finally found out he wants chocolate cake for his birthday.
…oh, how I miss it! I used to really enjoy just sitting in a quiet house, with the absence of sound. I’m sure there were sounds there but with my level of hearing loss, I didn’t hear them. It was just nice, peaceful and relaxing. Around here, the phenomenon of a quiet house didn’t happen often but when it did, I always enjoyed it.
Now, there is never silence. It’s like I’m living inside a noise machine all day and evening long. The only break I get is when I’m sleeping. All day, constantly, my head is filled with noise. Twittering, whistling, roaring, beeping, whooshing…I hear pipe organs, engines revving, phones dialing, modems booting up, ghostly moans and sounds like a UFO is landing on my lawn.
When I first lost my hearing, I welcomed the tinnitus because at least I was “hearing” something. Anything. It kept me from panicking completely. But now…well, it’s been over a month. I’m a little tired of this crazy racket my hearing nerves are producing. I know I can’t escape it so I try not to dwell on it and frustrate myself. But geez! A little peace and quiet, please?! What I wouldn’t give to be able to put in my hearing aids like I used to, turn them on and “hear” the tinnitus fade away.
Is it crazy to say that when (when, not if!) I get my cochlear implant, the first thing I’m going to look forward to and hope for is some blessed silence?! I wonder if that’s how it works. On activation day, does the tinnitus disappear when you’re wearing the CI?
Today we pulled off a rather miraculous feat…we got the whole family together to go see Iron Man at the theater!
We only have a short window of opportunity to see movies in an actual movie theater, because our only option is the open captioned movies shown at Marcus Theatre near our home. (I realize we are really lucky to even have this option available, close enough for us to drive there with no problem.) They show open captioned movies on Friday, Saturday and Sunday, usually one matinee viewing per day. A movie is there for one weekend and then it moves on.
Dave, Eric and I were really looking forward to seeing Iron Man…especially Eric. He’s a huge, huge superhero fan and still has a massive painting of Superman on his bedroom wall, which he’s had since he was 2 years old. (Granted, it’s got a huge Joy Division [Love Will Tear Us Apart] poster on top of it now but still, he never wanted us to paint over it!) Paige…yes, Paige, not Raven…had no idea who Iron Man was, which horrified Eric and inspired a passionate discourse in the kitchen before we left.
Anyway, as I said, it was kind of a miracle that we pulled this off now that both kids are teens and Eric is practically off to college. To have them both present and awake in the house at the same time is a rare event! We only had one chance, today at 12:25 pm, to see this movie and none of wanted to miss it.
This was my first time seeing a movie in the theater since I lost the rest of my hearing. Dave and I had been going to OC movies for the past few years now, ever since this theater started offering them. (We much, much prefer them over trying to use the ALDs that the theaters provide, which never really helped us. If they worked at all, we’d have to hold them in place over our hearing aid microphone because they were meant to go inside your ear, where our ear molds already were.)
It’s always fun to go to OC movies because the theater is not very crowded, and I just think it’s really cool to see people signing – it’s not something I see very often otherwise. This was the first time I really noticed many people using cell phones – I would say 90% of the people there were texting on cell phones before and after the movie. Now that I’m using my phone for the same purpose it has really opened things up for me – before, I never used the cell phone because I couldn’t hear on it even with my hearing aid on T-switch. It never really occurred to me to text with it because I just don’t call many people with it. Now that my son has a cell phone, though, it’s been really helpful as a way to keep in touch with him when he’s out and about.
Anyway, it was a surprisingly different experience watching this movie as a totally deaf person rather than hard of hearing – for instance, not realizing that music is being played really changes the experience. We stayed until the credits were done rolling to see the “secret” scene at the end, and I noticed that ‘Back in Black’ by AC/DC came up in the music credits. I was so sad to know I missed it because I love that song!! They didn’t mention any music or lyrics in the captions so I never realized music was even playing. (At one point I glanced over at Eric and saw him playing air guitar … LOL … so I figured there must’ve been music during that scene!)
It was really cool to feel the vibrations during explosions or really loud parts of the movie. That’s not something that I experience when I’m watching a movie on TV at home, and it helps me feel like I’m ‘hearing’ it if I can feel it.
The movie, by the way, was absolutely fantastic and we all highly recommend it. I’m a big fan of superhero and action movies anyway, but this movie had great dialogue, special effects and lots of humor to go along with the action sequences. It was extremely entertaining from start to finish. If you haven’t seen it yet, go!!
Dave and I went to Half Price Books yesterday. I found a copy of “The Lost Continent” by Bill Bryson on clearance for $1.00 and snapped it up. I really love his books and have been trying to collect them as I come across them, even though I’ve read them all (from the library). It’s been years since I read this one though, and I’m looking forward to re-reading it.
As we checked out, the cashier noticed my book and her face lit up. I could tell she said she also liked his books and asked if I’d read them before. I told her yes, that I’d read them all from the library but now I was trying to get my own collection of his books to keep because I love them so much. She was very excited and went on to say something else that I just totally missed because she started talking quickly. I could tell it was a story rather than a question, so I smiled and chuckled when she did, and I could tell it was an appropriate response because I didn’t get the quizzical “Why the hell are you laughing?!” look that people will give when you don’t respond appropriately.
As we left, I was feeling pretty triumphant…I had held a little conversation with the cashier and she didn’t realize I was deaf! Yes! I was patting myself on the back for my awesome lip reading skills when I asked Dave, “What else did she say, after I told her that I’d read Bill Bryson’s books before?” Well, it turns out she was telling me that she MET him, twice! Aw, man! I really wish I’d realized what she said because that would’ve been so interesting to hear about. So it was a bittersweet triumph…I was able to communicate, but not get all the information.
As we drove on, I was glancing at the book and remembering how funny it was. At the stoplight I handed the book to Dave to read the first page. I realized I can’t hear him laughing now – it used to be that I’d hear him chuckling and I could glance over and see what parts he thought were funny. I miss hearing that! We both love to read and at night we usually read for at least 10 or 15 minutes before we go to sleep. I can’t hear him chuckling over his books anymore, darn it.
I love books, in general, by the way. I think being hard of hearing really made me gravitate towards books because I missed so much in school – if the teacher was walking around, or had a soft voice, I really wouldn’t be able to hear. I missed pretty much everything during class discussions – I could never hear the questions or comments that other students made. I could read the textbook, though, and catch myself up. Reading was a great way to entertain myself.
The only time in my life that I didn’t read much was when my kids were little. It was too frustrating to get into a book and then be distracted, because the kids just need you so much when they’re little. As they both entered grade school I started reading more. Now I have a stack of books waiting to be read and I really really lose myself in books! There’s nothing to distract me!
I put the Paperback Swap link on my site because it’s been the best thing I’ve joined in the past few years. It’s a really fun way to pass on books that you’ve read but don’t mind giving to somebody else, in exchange for a book that you’ve really been anxious to read.
I’ve read two books on cochlear implants so far: “Rebuilt” by Michael Chorost, and “Hear Again” by Arlene Romoff. They were both really good and I highly recommend them. Michael’s book was more technical and I could really relate to the way he lost his hearing – it was very similar to my experience. Arlene wrote a lot of fantastic stuff regarding what it’s like to be hard of hearing, and how her hearing/brain adjusted to each of her mappings. Even though they were both books about people getting CI’s they were actually very different and each had really interesting information and experiences to share. I had to have them both requested from other libraries because my local libraries didn’t carry them. Right now I have another book on request, “Bridge to Sound With A ‘Bionic’ Ear” and I’m waiting for that to come in.
Anyway, back to what I originally wanted to write about (I tend to get sidetracked a lot). I keep running into these little things that just kind of break my heart, even though they’re so minor that most people just take them for granted. For instance, I made microwave popcorn the other day. I had a bad experience with microwave popcorn when we first got this microwave and I burned the crap out of it. Ever since then, I’m careful to watch the popcorn and listen for when it reaches the point where the kernels are only popping once in a great while. Then I turn the microwave off before the popcorn burns. Now I can’t hear the popcorn. I actually panicked at first, until I realized I could watch the bag and see it moving around as the kernels popped. But…geez. I can’t hear popcorn popping!
The phone rings and I can see my mom’s name on the caller ID. I still have to stop myself from reaching over and picking up the phone. I have to have Dave listen to the voicemails and let me know what she said.
I don’t hear the TiVo making its little boops and beeps. When I play Snood on the computer, I don’t hear any of the sounds. When my cats meow, I just see their little mouths open.
When Toby barks, though, I do usually feel a vibration behind my ear. That’s a little triumph. So far I haven’t had to tell a store clerk that I’m deaf. I’ve been able to lip read the questions and comments that they make as I’m checking out. Every time I respond, “You too!” when they tell me to have a good day, I get a little thrill. It makes me feel like I’m doing a successful job at acting the part.
Visiting the doctor’s office is becoming routine now. I’ve been there four times in the past month, which is more than I’ve seen any other doctor in such a short period of time. Well…maybe during the last month or so of each pregnancy I was going once a week for a checkup. Still though, that was so long ago. I’m the type of person who only goes to the doctor under drastic circumstances. I see my internist once a year for my full body work-up and that’s about it.
I’ve even begun to remember how to get there. Dave can drive somewhere once, and return to that place again five years later and still remember how he got there. It blows my mind. I don’t know if it’s the fact that he’s the driver and I’m the passenger, so I’m not paying as much attention to the streets as I am the scenery. We can drive the same route to the same place over and over and I’ll still need to consult MapQuest for the directions.
As usual, we don’t wait long in the waiting room but the wait in the examining room takes forever…more than 30 minutes. Dave and I alternately stare at the walls and make casual conversation, while watching the bottom of the door. We can see shadows there, and if the shadow stops in front of the door we know to expect the doorknob to turn and the door to open.
Every time my doctor comes in the room, he’s carrying a laptop. This always startles me – I expect him to start typing on it and then turn it towards me to read. He never does this, of course – I imagine he’s looking at an electronic version of my chart. Kim mentioned in a comment that she’s surprised more doctors for deaf and hard of hearing people don’t use CART or the Ubiduo or something similar. I agree! Dave thinks it’s because it slows things down and they don’t want to take the time. (He’s had some frustrating experiences with the medical profession in the past.) In any case, it’s business as usual, with me 100% lip reading, but my doctor is easy to lip read so I don’t stress out too much.
It turns out he thinks I asked for the visit, to ask questions about the bilateral surgery. (We scheduled this appointment because the audiologist who did my CI evaluation sent me an email telling me that the doctor wanted me to come in so he could talk to me about the bilateral surgery, recovery period, etc.) I feel put on the spot and all of the questions I’d had fly out of my head. All I can think of is to mention that I get nauseous from anesthesia. Dave steps up and starts talking, and that gives me some time to think about what I wanted to ask.
Finally, I remember. Will I have twice the amount of dizziness/vertigo with a bilateral surgery? Will I have to stay overnight in the hospital? The doctor says no to both of these questions – well, he tries not to have anybody stay overnight and they schedule the surgeries early in the morning, so unless there’s an unforeseen complication, I should go home the same day. (Thank goodness…I really can’t stand staying overnight in the hospital.)
I ask about my contact lenses/glasses. I know I can’t wear contacts for the surgery but if I can’t have my glasses on, I won’t be able to see to lip read. (I am very, very nearsighted.) He tells me I can keep my glasses on and they’ll use “signs”. (Dave and I haven’t figured out if this means actual paper signs or sign language, which would be weird since the doctor knows I don’t sign.)
But! I thought of a question now that I’m home and we’re puzzling this out. If the bilateral surgery is approved, and I have it, how do I wear the glasses in the recovery room? I know the trick about removing one arm on the side you have the surgery, so the bandage isn’t in the way. But how do I balance my glasses on my nose with both arms removed?! If anyone out there has had bilateral surgery and wears glasses, I’d love to hear how you solved this dilemma.
We receive a two page document stating the risks involved in the surgery, and things I have to either avoid completely or watch out for after surgery (mostly medical procedures that would conflict with the implant). I sign the document and Dave witnesses it. I ask about the most distressing side effect mentioned, facial paralysis. It talks about the potential of having your eyes and facial muscles affected: drooping on one side of your face or the other, or your eyelids not closing. This completely freaks me out. How do you deal with your eye not closing?! Doesn’t it dry out? (I have this thing about eyes…I can’t even imagine eye surgery or see any kind of injury to an eye without feeling like I’m going to pass out.)
We talk a little about the benefits of bilateral implants and getting the surgeries both done at once. Up til now I hadn’t been sure how the doctor and audiologist felt about simultaneous bilateral implants…they both seemed kind of reserved about it rather than enthusiastic. However, now the doctor’s enthusiasm really comes through and it makes me feel better. This is what I want…this is all I want. Bilateral implants.
I tell the doctor that I’m willing to accept the risks and would like to go ahead with bilateral surgery. Although he’s done hundreds of cochlear implant surgeries (and I feel very, very comfortable with my doctor and this practice) he’s not done many simultaneous bilateral surgeries, simply because insurance usually doesn’t approve it.
This sobers me a bit. I ask him what I should do if my insurance company (Aetna) denies bilateral surgery but approves surgery for one implant…should I appeal, or just go for one and be happy I at least got that? He says if it was him, he’d go for one.
And that’s pretty much it. The visit ends up taking about 1-1/2 hours, and a good hour of that was spent just waiting in the exam room (the doctor left the room for another 30 minutes or so while we read through the literature on the risks and side effects of surgery).
When we go to leave, we talk about with the girl at the receptionist window. I’m not sure what her job title is – she sometimes answers phones but also seems really well-versed in medical things as well and usually isn’t sitting in the receptionist area … she walks around in back and periodically comes over to help (for instance, she recommended the place we went to for my MRI). She tells us that it could be 30 days or more before they hear from the insurance company, and if we hear from them first to let the doctor’s office know.
I know my audiologist is out of the office that day (Friday) and that she needs to add the doctor’s report from this visit to her letter to the insurance company. I imagine she’ll do that tomorrow (Monday) and the letter will go in the mail either tomorrow or Tuesday, May 20. I actually had thought the letter went out right after my visit on May 7 – it wasn’t until her email to me this past Thursday that I realized it hadn’t gone out yet.
So the countdown begins in the next day or two. It’s really hard to let myself want this so much. On the one hand I’m trying to be kind of negative (“Oh, they’ll deny me and we’ll have to appeal”) so that I’m not crushed if I get a denial letter. On the other hand, I want to be positive and upbeat and excited about this. At least I have insurance! They do sometimes approval bilateral implants! Then I look closer at their company policy on bilateral implants and begin to doubt myself. The wording is not entirely positive:
There is evidence of the effectiveness of binaural cochlear implants in improving audition over uniaural (monaural) cochlear implants. A recent technology appraisal prepared by the National Institute for Health and Clinical Excellence (NICE, 2007) recommended simultaneous bilateral cochlear implantation as an option for three groups of persons with severe to profound deafness who do not receive adequate benefit from acoustic hearing aids: prelingual children, persons who are blind, and persons at risk for cochlear ossification.
At first it looks like, “Oh! They have evidence that binaural implants are effective!” Then you keep reading and…yea. I’m not in any of those three groups of individuals they say will benefit.
So I’m teetering. One minute I’m sure it will just get denied. The next I’m all, Bilateral! I’m going to have bilateral implants!
I have to say that I want them badly enough that I will probably appeal if bilateral implants are denied but they approve one implant. It will depend on the wording of the letter but I think I feel like a bit of a fight if need be.
** This is a song by Toad the Wet Sprocket. I love this song and I wish I could hear it again!!
I’m engrossed in whatever I’m doing…dishes, typing, reading, sewing. Totally focused, listening to whatever weird thing my tinnitus is doing at the moment (Pipe organ! Roaring ocean! Revving motorcycles!). Suddenly there’s a tap on my shoulder and I shriek, peel myself off the ceiling.
Sometimes I feel like being deaf is going to give me a heart attack.
Seriously though, it’s very strange not being able to just hear my name and respond. My family has to go the extra mile to get my attention now. They have to walk up to me and tap me (and scare me half to death), or do an interpretive dance from across the room…waving their arms, waggling their eyebrows and fingers, until I notice the motion and glance over.
Let’s not even talk about what the cats do to me. We have five cats. Three are former ferals and aren’t yet to the point where they are lap cats (we can’t even pick them up) although they do come up and rub against our legs. However, my other two cats are very affectionate. More than once I’ve been totally engrossed at the sewing machine and felt something grab my thigh. It’s even more terrifying because my thigh is the last place I expect to be grabbed or tapped! Inevitably I look down and see a cat hanging off my leg, looking for attention. Before I lost my hearing I always had some warning because they usually meow for a while first. It’s only if I’m ignoring them that they become more aggressive and start grabbing at me with their paws. I told Sabrina, our black fluffball, that I was going to give her a collar with a flashing strobe light on it. Forget the bells (they’re indoor cats anyway so birds don’t need to be warned)…I need a visual indicator that I’m about to be affectionately assaulted by my felines!
I’ve been thinking about setting up a mirror to the side of my computer monitor, so I can tell when someone’s coming up behind me. Sometimes I get a reflection off the printer or my water glass and the movement will make me turn to look. But it gets a little exhausting constantly looking around, checking to see if anybody is trying to get my attention.
I find myself making sure I don’t turn my back to people, if I can help it. If I’m cooking, I’ll do my prep work on our stove top with my back to the patio door. That gives me a full view of the kitchen and there’s no reason anybody would be behind me. No more cutting vegetables at the sink for me!
On a totally unrelated note, I find myself missing music more than I expected to. Whenever I try to think of a title for a journal entry lately, it seems to be a song title or lyrics. The funny thing is, although I listened to music avidly as a kid, teen and young adult, once Dave and I got together (I was in my 30s) I pretty much stopped listening to music. Since he’s got a hearing loss, it was just too hard to converse with music in the background. We’d have to turn it down so low that I couldn’t hear it anyway. Plus, the kids were young and I didn’t want to wear headphones because I wouldn’t be able to hear if they were crying or needed me. Even in the car we rarely played music, again because it was too hard to converse. (We also almost never drive around with the windows rolled down – the background noise makes a conversation impossible. As soon as spring rolls around, we’ve got the air conditioning on in the car and the windows rolled up!)
Yet, I find myself “hearing” certain songs over and over in my head. I make up new arrangements for them too. It’s very strange! I went through a phase where I just kept hearing Beatles songs. I’m not even a big fan of the Beatles but my dad was, and I realized I was hearing the songs I was used to hearing all the time as a kid. Same with the soundtrack for Jesus Christ Superstar, which my dad listened to frequently (and I liked it so much that I got my own copy).
In fact, a lot of the songs that pop into my head are from my childhood. ‘One Bad Apple’ by the Osmonds (yes, I loved Donny Osmond), the soundtrack to Jonathan Livingston Seagull (specifically ‘Lonely Looking Sky’), and from my late teens, ‘Puttin’ on the Ritz’ (the version by Taco). That last song pops into my head all the time…it’s not even a song I was particularly fond of! Crazy!
We went over to my mom’s house on Mother’s Day. It’s kind of funny, this ‘holiday’. On the one hand, I’m a mom so in the back of my mind I feel like it’s my day to be pampered. On the other hand, I don’t want to ignore my own mother so of course I always end up getting together with her too.
My family did a really nice thing for me – I got a membership in the Hearing Loss Association of America. It’s something I’ve been meaning to do for the past month!
The past couple of years we’ve gone out to breakfast for Mother’s Day, which was hit or miss depending on how busy the restaurants were. This year we just stayed in; my mom cooked and I did the dishes (with Dave helping). I was pretty nervous about this visit because I haven’t gone to any social events/family gatherings since I lost my hearing. I had no idea what to expect, whether I’d be totally lost and frustrated or whether I’d just kind of withdraw into my own little corner.
My brother, his wife and their baby boy weren’t there (they have all been fighting illnesses the past week) so it was just me, Dave, Raven, Eric, my mom and her boyfriend Pete. It ended up being just fine. Pete was the hardest for me to lip read because I haven’t talked to him as much as I have everyone else, but by the end of the evening it was much easier.
Dinner was the hardest – it was hard to lip read Dave because he was right next to me (on my left), and if he turned to talk to people on his left then I could barely see his face. There was really no good place for me to sit where I could see everyone at all times, so I would periodically have to ask him to fill me in when he was done talking. If anybody was talking while they were eating, it was obviously a lot more difficult to understand them. But all in all, I was really pleased at how the evening went.
We have a couple of big events coming up here…Raven graduates 8th grade and Eric graduates high school, both the first week of June. I didn’t think to request CART until a couple of days ago. The high school principal already wrote back and said there probably wasn’t enough time to get CART arranged for the ceremony but they could seat us in the front. We need to get there early. He did say “you and your husband” even though I explained that Raven and my mom would also be there…I’m not sure if that was an oversight or if they really would try to separate us when we’re seated. I’m just planning to have all 4 of us present ourselves to the principal for our special seating, and if he wants to argue with us, he will have to deal with my mom.
I haven’t heard back from Raven’s school yet but she already asked and pretty much got the same answer I got from the high school – doubtful for CART but no problem to have seats in the front. That’s good enough for me. If I’d had more time, I would have asked sooner and fought more for CART but I’ve actually never used CART before and I’m a little clueless about it myself. We’ve got so much going on right now that I just don’t feel like fighting with the schools…I can only deal with so much at once.
Then we have Eric’s college orientation day in the middle of June. I wrote and asked them about accommodations but since I don’t sign, they didn’t really have much to offer. It’s a situation where we’re moving from room to room, listening to different speakers and seeing different parts of campus, then reuniting with our kids for lunch, etc. I don’t even see how they could provide CART in a situation like that anyway, so for that I’ll just be relying on Dave to pass on information to me, plus I’ll read over the handouts that they give us.
Raven will have high school orientation in the middle of August. Luckily I’m used to how this goes because I’ve done it before with Eric, and I already know the high school well.
You know, we have this button that says “I read lips” from the Say What Club, but I’m not much of a button-wearer. Maybe I should make some kind of cool t-shirt (or find one, if they exist) that says that I’m deaf and read lips, so please face me.
Or maybe I could just cut out big circles with slashes through them and tape them over my ears!
For some reason, I’m nervous this time. I guess it’s because I really don’t know what to expect from a CI evaluation. I’m not sure who will be there, what they’ll ask, what tests they’ll do. Will a psychologist evaluate me? How long will the hearing tests be?
I’ve always hated hearing exams and eye exams. I feel like I’m failing them. My eyesight is bad (-9.0 in both eyes, nearsighted) but it’s been stable for a long time. Still though, hearing tests are worse because at least with an eye exam you eventually get to a point where you can see the chart and you feel like you’ve succeeded. There’s never success for me with a hearing test!
We go into the office and wait for a while in the waiting room. There’s just one other couple there, and when someone comes out to get them and they both stand up, I realize the woman has an Advanced Bionics CI. The lady who greets them gives the woman a big hug and shakes the man’s hand. I wonder who she is…maybe the woman’s audiologist?
The lady who comes to get me is a new face – she’s not someone I’ve seen before. (My other two hearing tests were each administered by a different audiologist.) She has a younger woman with her, probably in her twenties. I don’t catch her name but I think she’s in training. My audiologist, Kathy (or Kathleen – that’s how it’s listed in her email but I think she introduced herself as Kathy) seems to be about my age or a bit younger. It’s still a little weird for me to have doctors and other medical professionals who are younger than me!
She brings me and Dave back to a room, we all have a seat and begin to talk. I’m relieved that she’s easy to lip-read. I realize I’ve been pretty nervous about the fact that this visit is so information-packed and it’s really not information that I want to miss. I wasn’t sure how much I’d really catch, doing 100% lip reading. The hardest part is probably when she’s explaining how the CI works, flipping through a book with diagrams. I have to look at her lips to understand what she’s saying, but then I can’t really look at where she’s pointing to or examine the diagram very much. Luckily I feel pretty well-versed already in how the CI works from the research I’ve been doing.
The first thing Kathy asks is about my recent hearing loss – was it very sudden, what exactly happened? We then talk about the initial cause of my hearing loss (which isn’t known) and my theory that it may be genetic rather than caused by the high fever I had as a toddler with roseola. Kathy points out that it could be a combination of the fever and a genetic factor. I ask about erythromycin, because I’ve read that it is ototoxic. I’m allergic to penicillin and that’s the only medication I ever took as a kid and young adult. However, I would have had to have been taking some pretty high doses for a long time, apparently, and that’s not the case.
After this short discussion, they ask if I’ve gotten new hearing aids since my most recent loss. I tell them no; ironically, I had been considering buying new hearing aids this year since the pair I’m wearing are 15 years old and starting to fall apart. I was hesitating because of the high cost…now I’m really, really glad I didn’t spend $5,000 or more on a new pair of hearing aids just to go deaf a couple of months later. LOL!
So they tell me they’re going provide the strongest hearing aids available for me to use during the upcoming hearing test. I get a little excited – cool! I wonder if I’ll be able to hear anything with these? If I do, I wonder if I’ll get to keep them for a while…kind of a trial basis thing or something. They go in and out of the room with the aids, which are gray and much slimmer than my beige Beltones, but still behind-the-ear style. I give them my hearing aids and they put the new hearing aids on with my ear molds. They put the left one in my ear and turn it on and…oh my gosh. My whole head is vibrating. It feels like my eyes are spinning around in my head. I don’t hear anything, it’s just this head-shattering vibrating. I say, “Woah!” and they look concerned right away. They ask what’s wrong and I explain to them what it feels like. I’m starting to feel nauseated from the dizziness. I guess there’s major feedback from the hearing aid, so they quickly remove it and use these foam ear pieces instead of my ear molds. They squeeze them and stick them in my ears, then try the hearing aids again. Same result.
More going back and forth from the room for a while, then they apologize and say that they know it’s uncomfortable, but they have to do the test with the hearing aids. They promise me they will try not to talk very much, and ask if I can just hang in there for the test. Of course I say okay – I’m the most non-confrontational person you’ll ever meet! It’s a little better and at least I can walk without feeling like I’m spinning around. I think they’ve lowered the volume a bit. I just have to close my eyes when someone talks and my head starts to vibrate.
The hearing test is the usual – I’m in a booth, and I’m told to squeeze the button when I hear anything. Then I’ll hear a man’s voice reciting words; just say whatever I think the word is, if I hear anything at all. I ask what to do if I just feel the vibration instead of hearing it. They tell me to just let them know that I can feel it. Well, that ends up being really annoying. I wish I’d had one button to push if I heard the sound and one to push if I just felt the vibration. It turns out that I don’t hear anything, although I do push the button twice for my right ear. It’s hard to tell if I’m hearing or my head is just vibrating so much that I think I’m hearing something. For all of the other things I can sense, I end up saying “I feel that.” Every time I say this, my head is shattering from the vibration in the hearing aids. It’s exhausting and frustrating.
I can tell when the word recognition part starts because instead of a short vibration, I get longer sentence-like vibrations. I have absolutely no idea what’s being said; I hear nothing. I just feel my head rattling around.
They do three tests: one with both hearing aids in, then one with just the left aid in and one with just the right aid in. Finally it’s over…thank God. I don’t think it took very long…it felt like 10 or 15 minutes to me but Dave said he thinks it was more like 20 to 25 minutes.
We all meet back in the room and Kathy tells me that yes, I would be a candidate for a cochlear implant. She says that my MRI didn’t show any problems; that my left side looked “a little better” than the right, although I didn’t catch what she meant by that. She talked a bit about the auditory nerve and I did have her repeat that to make sure I caught everything.
This was the point where she took out the binder and explained how the CI works. Then she pulled out a couple of briefcases and showed us the parts of the CI’s from each company that they work with: Cochlear and Advanced Bionics. I held each sound processor, tried it on my ear and played around with the controls. She showed us the actual implant – it was absolutely amazing how small the part that goes into the cochlea is! It was much, much smaller than I imagined. We got to hold the implant and marvel over it – Dave really liked that part. He’s much more ‘techie’ than I am!
Of course, Kathy was very neutral regarding the two companies and said they both have very good results. We talked about the meningitis vaccine and a little bit about the surgery. She went over the various accessories for each CI and showed me how the batteries come off and the different battery options for each brand. We talked a bit about expectations, and the mapping process after the CI is activated. I asked if I would be returning to that office for mappings and she said yes, which was good news since it’s not too far from our house. (It’s about a 30 to 45 minute drive, depending on traffic.)
We also talked about bilateral implants. I was surprised that this wasn’t something she strongly recommended; she seemed kind of laid back about it when we asked. She did say there were studies that showed a real benefit to bilateral implants and that I would definitely benefit since I can’t hear with a hearing aid in either ear. I think the simultaneous bilateral CI surgery is still kind of new and I suspect a lot of people don’t opt for it. I’m sure it’s harder to get insurance approval for it too. Still though, I’m used to the semblance of hearing from each ear since I was wearing bi-CROS hearing aids. If my aids needed repair and I had to just wear one in my “good” ear (in the past), it drove me crazy because the sound was all wrong and I really missed a lot. I’m assuming bilateral CI’s would give me the same “surround sound” effect so even with the extra recovery time, it’s still something I’m interested in if the insurance approves it.
The whole visit took about 2-1/2 hours and I came away from it feeling pretty good about things. Since I already have big information packets from each company, I didn’t get company-specific paperwork. I did get some forms though, explaining the meningitis vaccine, basics on what to expect from a CI, and the cost (good grief, it’s more than double what I thought it cost just for one CI…the thought of what it costs for two is kind of frightening).
Kathy gets my email address and tells me she’ll keep in touch via email, which I’m so grateful for. Right now I have Dave doing all the phone calls for me, which I’m sure he’s not crazy about (although he never complains). She says that the next step is for her to write a letter to the insurance company for the pre-approval. She’s going to go ahead and request bilateral implants. She tells us to find out who the contact person at the insurance company is and bug them. This is not something I’m likely to do, being non-confrontational like I am, but I’m also used to dealing with insurance companies since I did it for my job when I worked in Human Resources a number of years ago. I can do it if I have to!
After we get home, Kathy emails later in the afternoon and says the doctor would like me to come in for a visit so we can talk about the difference in recovery time, etc. for bilateral surgery. I have a lot of questions about the surgery for him anyway, so I’m kind of glad. We’re going for that appointment on May 16 (this coming Friday).
So now we wait for pre-approval and I have to make a decision on which company to go with. I have to thank everyone, once again, who replied on my earlier post. I know this is a really new blog and it isn’t very visible yet, so I wasn’t sure how much feedback I would get. I was pleasantly surprised! I’m so happy that you all took the time to write and give me your experience and thoughts on the CI’s that you have.
I think right now more than anything, I’m concerned about money. Since I pay for my own health insurance, I have a very high $5,000 deductible. I also just switched to this company this January (my other company was raising the monthly premium again and it was just becoming unaffordable). So here I am, a new member of just 5 months and I’m requesting this majorly expensive surgery! I have no idea what to expect and whether they’ll approve it. Even if they do, our out-of-pocket expenses will be astronomical. And if I get two CI’s, I’ll have the cost of upkeep and, eventually, upgrades for two CI’s instead of one. On the other hand, if the bilateral surgery gets approved it seems stupid to pass it by just because it’s more expensive to have two CI’s versus one. I figure we’ll find a way to pay for it—we always do!
To look on the bright side, the company I switched to does often approve CI’s. And at least I have insurance – I had been very tempted to just go without health insurance for a while to save money on the monthly premiums. I am really glad I didn’t end up doing that!! I know I’m lucky to even be in a position to consider getting CI’s so I’m not going to complain.
Finally, my last concern is that I’m going to have really bad vertigo if I have bilateral surgery. I’ll have to ask the doctor if that’s more of a possibility when you do both ears at once. I guess if I do, at least we have a cane I can use. Dave has one and he sometimes uses it at night since his vestibular system was destroyed when he had leukemia. If anyone can teach me to overcome vertigo, it’s Dave! It took him two years, but he went from not being able to walk in a straight line (he would just spin in circles, and have to creep along holding the wall with both hands) to being able to walk with just a slight wobble now and then. He amazes me!
One of these days, I’ll write more about Dave and how we met. For now, I’m finally going to bed.