I like to do this thing where I think ‘At this time last year, I was …’. It’s kind of amazing to look back and see how much things change in a year or five years or whatever. Dave and I were talking about this today because seven years ago at this very moment, I was in the recovery room at the hospital. This day marks seven years since my bilateral cochlear implant surgery.
Seven years ago, Eric was just about to enter college and Paige was just about to enter high school. How weird is that?
Dave reminded me that August 21, the day after I was activated, was the day we moved Eric into his dorm. I remember that like it was yesterday; I could hear sounds, but everything was weirdly robotic and voices were still very strange-sounding, especially the voices of Eric’s roommate and his family. I remember listening to the rhythmic sound of the car tires on the expressway until the sound made sense to me; same with the sound of the turn signal clicking.
So much has changed in seven years. I didn’t know back then whether the surgery would even work, and I wouldn’t hear sound again for another month. (Activation was a month after surgery, after I was mostly healed.)
The processors I wear (Advanced Bionics Harmony) are old news now, even though they were the latest and greatest when I got them. Since then they’ve introduced the Neptune (an off-the-ear, waterproof processor) and the Naida. I still follow the boards on Hearing Journey and offer support/mentoring to people who are curious about getting a CI, but I really can’t offer hands-on experience with the newest technology … and that’s a strange feeling. I might look into upgrading once we move and I know what our financial situation is going to be, but right now every spare penny gets saved for our future home. My Harmony processors are working fine for now (the rechargeable batteries are getting a little worse for wear though; I might need to buy some new ones).
I haven’t really been writing here that much lately. It’s not like anything bad is happening; summer is here and things are going along just fine. A couple of times I started to write a blog post and then got a sense of déjà vu, like I’ve written about the subject before. A quick search then shows me that yep, I wrote about that exact subject two years ago or whatever. I’ve gone through these periods before and I’m sure it’s just temporary. For now I’ll try to pop in and say hey even when there’s not much to say … and eventually I’ll be writing like crazy again.
So here’s to the next seven years – hopefully by then I’ll look back on this post and think ‘Wow, I was still using Harmony processors back then!’
It’s been about two years since I first posted this, and I thought I’d re-post for those who haven’t seen it before:
I realized the other day that there’s a lot of things about having cochlear implants that I assume everyone just knows. When I first started this blog, I think my main ‘audience’ was other people with cochlear implants or who were considering one. As the years go by that’s no longer the case, and there are certain questions that I frequently get asked, so I figured I’d write a little bit about being bionic.
Just as a quick refresher, for anyone who doesn’t already know, I am profoundly deaf. I lost my hearing three separate times during my life, for reasons nobody has ever been able to figure out. So I didn’t grow up deaf (I wore hearing aids). When I lost my hearing the third time, in April 2008, it left me with no usable hearing – I don’t respond to anything on hearing tests, and there is nothing that I hear, even with hearing aids.
I received a cochlear implant in each ear in July 2008. Instead of thousands of little hairs in my cochlea waving around and helping me to hear, I now have a teeny strip of 16 electrodes that do the job. The sound is interpreted by my brain after it’s routed through an internal micro-computer to the electrodes. The signal is transmitted via the headpiece/antenna connected to a processor (also containing a micro-computer) that I wear on my ear; it looks like a big hearing aid. There’s a magnet inside my head, and there’s one in the headpiece that is attached to my CI processor via a wire. The magnets are of opposite polarity. I put the magnet headpiece up to my head, feel around until I can feel the magnet pull, and let go. It clings to my head via the magnet in my skull. Here’s a couple pictures:
So that’s what I mean when I talk about “having CIs.”
I didn’t have brain surgery. I won’t get graphic (because I don’t know enough to!) but basically they make an incision behind your ear, along the curve, and then (for me, anyway) up and back a bit. They thread the electrodes into the cochlea and they shave/drill some of the skull to fit the magnet/radio antenna component, which is a couple of inches up and back from the ear. (I think this is slightly different for everyone, based on skull thickness.)
When I attach the magnet, it doesn’t hurt; I don’t feel anything at all. Once it connects, there’s a pause and then a woosh of sound as I begin to hear. (If the magnet is not attached, I don’t hear at all.) Now that I have a program called ClearVoice on my CIs, there’s another change as any loud, steady background noise (fans, etc.) gets suppressed.
If I run my fingers over my scalp, I can feel bumps – very, very slight on the right side and very, very noticeable on the left side. They did shave a bit of hair for the surgery, right behind my ear. Since my hair is long, it covered the shaved areas pretty well. For about 6 months after my surgery, I had my mom (a hair stylist) and my husband use clippers and keep the hair trimmed where the magnet connects. Your head stays swollen for quite a while and the less hair in that area, the better the magnet can connect.
I don’t wear my CIs in the shower and I don’t wear them to bed. I usually take them off if I’m going to nap, because the magnets get knocked off anyway when I lie back. I can get my CIs slightly damp (I don’t freak out too badly in the rain) but they aren’t waterproof like a newer offering from Advanced Bionics, the Neptune.
I find it really difficult to do anything that requires lying back if I have my CIs on. The weight of the processor pulls it off my ear and if the magnets bump into anything, they slide off. This makes going to the doctor and the dentist a bit of a challenge (especially the dentist), and makes things like yoga and sit ups fairly tricky unless I take my CIs off. I have a contraption that helps keep the processor on my ear so I can use that, but after a while it makes my ear ache…plus it’s really hard to put on!
Because I don’t sleep with my CIs on, it’s a catch-22. It’s very easy to sleep because I hear nothing at all, hence nothing wakes me up … but it’s hard to wake up if I have to be up at a certain time. I use an alarm clock that can do a few things: it can connect to a light and flash it to wake me up (this would never, ever wake me up), it has a very loud alarm that can be made higher- or lower-pitched (this would never, ever wake me up), and it connects to a little disc that you can slip under your mattress or pillow, which vibrates/shakes the bed when the alarm goes off. THIS wakes me up. Boy, does it wake me up!!
The cochlear implants didn’t cure my deafness; I will always be deaf. Thanks to my CIs, I have a foot in the hearing world and a foot in the deaf world, which is pretty cool.
My CIs use rechargeable batteries. (This is different by brand – I use Advanced Bionics CIs.) There are two sizes – a smaller SlimCel and the larger Plus, which lasts longer. I started out with the Slims because the Plus size was too heavy for my ear, especially while I was healing. After a while, my left ear was able to handle the Plus size but up until about a month ago, I wore mainly Slims on my right ear. Now I just use a Plus on each ear, and the batteries usually last me the entire day. If I’m staying up really late, I might need to switch them out. With the Slimcel, it was getting to where I had to change batteries at least once, sometimes twice. (I need to get new batteries, since these are now four years old!) I keep two backup batteries in my purse, and I have four on my charging station that are always ready to go.
When my batteries die, there is no warning. With hearing aids, I could usually tell when the battery was about to go…my hearing would get slightly worse. Now, you could take the CI off, slip the battery off and then back on, and see how many lights flash on the processor. (Four lights means it’s fully charged; one means it’s almost depleted.) But as far as just wearing it and having the battery die, it just goes. I mean, one second you hear and the next you don’t. It’s a little weird, but I’m used to it now.
The CIs have enabled me to hear things I didn’t hear with my hearing aids. Before I lost all my hearing, I wore bi-CROS hearing aids because my right ear was completely deaf. So I wore a ‘transmitter’ on that ear, which looked like a regular hearing aid, and it wirelessly transmitted the sound coming in on that side over to the hearing aid I wore on my left ear. Now I actually hear things in each ear, which took some getting used to. I always used to position people on my hearing side, the left. It took a long time to stop placing myself in position to hear (sitting or walking with people to my left, that is). I never used to be able to tell what direction sound was coming from. It took about two years to start to really be able to do this with my cochlear implants, but now I can often discern which ear “heard” the sound. It is very, very cool!! I also hear more high-pitched sounds, things I never knew even made noise…like bubbles popping, for instance. I have still never heard a mosquito or fly buzz. I suspect my hearing loss is such that I just will never hear that.
I do have some electrodes in the higher pitches completely turned off (two or perhaps three). This is different with everybody – we all have different reasons for our hearing loss. When I hear the higher tones, it makes me very, very dizzy. I can’t tolerate it at all. I think this is probably why I have trouble on the phone. Many people with CIs use the phone, but for me it is very difficult. I can understand computer voices (the voicemail menu, for instance) but when a real voice kicks in, I often struggle to comprehend what I’m hearing. I have a phone that captions the conversation on a screen for me. There’s a bit of a delay, and many times the words are captioned incorrectly, but it’s definitely better than nothing! I can handle a very short conversation but I no longer use the phone about 95% of the time. I stick to texting and email. I think missing those higher pitches makes it harder for me in that situation, since that’s what helps us understand voices.
Same with the TV – I do still need captions when I watch TV or movies. It’s hard to explain, but unless I can see a face and read lips, it just sounds like…sound. If it’s very quiet, the person is not speaking quickly and their voice is very clear, I can sometimes follow along. But there’s almost always some kind of other background noise – music, laughter, gunshots, what have you — that get in the way of understanding what I’m hearing.
I’m not disappointed by this, or apologizing for it. I mean, my gosh—I’m deaf, hearing via a little computer I wear on my ear, and I can talk a bit on the phone and hear music, television and movies. So I still need some help with captions – so what? I was going to be happy even if all I heard was environmental sounds…anything other than 24/7 tinnitus and no real sound other than the crazy noises in my head. So I’m extremely pleased, thrilled even, to be watching TV with captions and cautiously, sparingly, using the telephone.
After I had the surgery, I could not hear. I had to wait a month before I wore the external parts (the processor and magnet headpiece) and got them ‘activated’ so I could hear. This is different with every CI clinic; some places do activations a week after surgery, some wait longer than a month. I was glad to wait a month because my ears were definitely too sore to wear the processors before that. I really did need that time to heal. My skull was still swollen even a month later and I had to use really strong magnets to keep the headpieces in place (I’ve since switched out to lighter magnets).
To activate the CIs, the audiologist will hook you up via a cable to his/her computer. (They take the battery off the CI and replace it with the cable.) You listen to beeps and tones and tell them what sounds most comfortable. At first it all sounds weird and robotic; some people just hear beeps instead of actual sound. As days go by, your brain adapts and you begin to hear things in a more normal way. Voices sound strange, like Darth Vader or the chipmunks.
I go back periodically for “mappings,” where I get connected to the computer and the audiologist adjusts the volume and fine-tunes electrode-related things. In the beginning I went every week, then every month, every 6 months, every year…now I just go when I feel I need an adjustment because my hearing seems off. I can get future improvements via the computer programs they put on my processor, without having my internal component replaced.
The surgery usually makes you lose whatever residual hearing you had. This was not an issue for me – I had no hearing to lose – so being deaf during recovery was just more of the same. But you don’t have to be completely deaf to get a CI – you just have to score low enough, wearing a hearing aid, on the hearing test. (How low your score needs to be depends on insurance and/or the clinic.) It used to be that you had to be pretty much deaf to get one, but over the years that threshold has changed and now there are many people who still have hearing and get a CI in order to improve upon that hearing and be able to hear voices again. There are many people who have a CI in one ear and wear a hearing aid in the other. Incidentally, Dave has looked into getting a CI because he is completely deaf in his left ear and wears a hearing aid in the right. He gets his medical coverage through the VA, and right now he tests too well with his hearing aid on to qualify for a CI for his left ear.
Styling my hair can be a little bit of a pain – I have this cord running from my ear back a couple inches on my head to the magnet. I can’t run my fingers through my hair to fluff it up or smooth it out without catching on the wire. I take my CIs off to style my hair, and I have to be careful when I put them on to keep the wire from flattening a big section of hair. (This is a girly thing…I’m sure guys don’t have this problem!)
I don’t try to hide my CIs. I think they’re really amazing and I like to show them off. I very rarely get asked about them. I never notice people looking at them although Dave has said he’s seen people behind me looking at my head (I have colorful covers on the magnets). Only once have I had someone ask me about them; it was in Target, and a lady walked past me and then doubled back. She asked if I had cochlear implants and we began talking; it turned out that her daughter had a CI as well. I also saw one guy with a CI at my daughter’s school her senior year. (She won an award and they had a breakfast for the kids and their families.) Afterward, when people were mingling, I saw him talking to somebody and it was very easy to see his CI. When there was a lull in the conversation, I went over to him and we talked a bit about our CIs. I never did this with people who had hearing aids! 🙂
I just realized how absurdly long this is, so I’ll wrap it up. I know I didn’t cover everything, so if anyone is reading and has a question about what it’s like to have CIs, I’d be happy to answer (if I can…I’m not really up on the technical aspects of things, for instance).
We’ve been watching the news out of Oklahoma with heavy hearts – the images of the destruction caused by the tornado are almost impossible to comprehend. I can’t help imagining how scared the kids in those elementary schools must have been, and how absolutely terrified their parents must have been as they waited to find out if they were okay. My heart goes out to everyone who lost property, suffered injuries or worse, who had to endure the storm not knowing whether they would survive.
Here in Illinois, we get some wild weather at times but mostly in the form of thunderstorms. We’ve never had a tornado in our town; we had that derecho last summer which was scary and knocked out the power for three days, and I remember one instance when Eric was a baby (in the summer of 1990) when there was a bad tornado not that far from here.
We have a lower level with a full bath, so I imagine that’s where we’d go if a storm was in our path. I worry about the cats, of course, because only one of them is tame enough to catch and put in a carrier; the other three we would have to try to herd down into the lower level with us and then pray for their safety. But if a tornado blew through our neighborhood in the middle of the night, let’s be serious: we would stay asleep until it lifted us out of our beds. Well, Dave might hear it, hopefully in time for us to move to safety. But we would never hear our town’s tornado siren; we are lucky to hear it when we’re awake and have our hearing instruments on!
I’ve been working toward making things a little more safe for us at night, when I have my cochlear implant processors off (and I’m completely deaf) and Dave has his hearing aid off (and he’s got a severe to profound hearing loss). Previously, the only alerting device we had in our bedroom was my Sonic Alert alarm clock. It has a vibrating disc connected to it, which you slip between your mattress and box spring (or under your pillow, if you really want to scare the bejesus out of yourself in the morning). It will vibrate the bed when the alarm goes off, and it will also alert you to the phone if you have the phone connected as well. We don’t have a phone in the bedroom (and our phone service is through our cable) so we can’t use it for that. At least we have a way to wake up on time!
I knew we could do better, though. There are all kinds of systems out there for the deaf and hard of hearing which will alert you to all manner of things: doorbell, baby crying, smoke detector, etc. We have a smoke detector (one of three) right outside our bedroom door, but would it wake us up at night if there was a fire? Hell no! Well…again, it might wake Dave up since he has some hearing left. But it definitely wouldn’t wake me up. Some fire departments give out smoke detectors with a strobe light for the deaf/hard of hearing. After exhaustive research, I couldn’t find one in our area and once I realized that the only alerting mechanism was a strobe light, I knew it wouldn’t help me anyway. It might help if I happened to be awake and looking in the general area of the smoke detector when it went off, but otherwise it would never wake me up.
I started looking into these all-in-one systems and just about fell over from sticker shock. They range in price from about $190 up to many hundreds of dollars. I guess they assume that everyone with a hearing loss also has a lot of money! Yes, we want to be safe but we also have to be able to afford the equipment.
There’s a place in our state (Illinois Assistive Technology Program) that will loan, for free, all kinds of equipment to people with various disabilities, hearing loss included. However, the loan is only for five weeks and then you have to return it. It’s a “try before you buy” kind of thing. It’s awesome if you have a short term need, or are really planning to spend big bucks on something and want to be sure it will be helpful before you spend the money. But it’s obviously not a long-term solution.
I decided to fall back on my main avenue for items I can’t afford at full price: eBay. I searched for three different popular, recommended alerting systems to see if any were available at an affordable price. I lucked out in my search for the AlertMaster AM6000 unit. It’s normally sold for $180 and I was able to get it for $19.95 on eBay. It comes with a wireless doorbell and a bed shaker along with the base unit. It also functions as an alarm clock.
You can have the system alert you to things like a baby crying, a smoke alarm (or other audible alarm that continues for at least 12 seconds), even a motion detector. The problem is, all of these things are separate transmitters that cost about $50 each. You could easily spend more than $400 on the base unit, all of the transmitters and a pager that you can wear in order to be notified all around your home.
Our main concerns were the smoke detector and the doorbell. I figured the doorbell alert came with the base unit, so all I’d have to do is save for the audio alarm transmitter (for the smoke detector). After we took a look at the unit, though, I realized I had been imagining that it would somehow alert us to the doorbell we already have. We can hear the doorbell just fine during the day, but if someone rings the bell at night (and it has happened before) then we have no idea. This unit, though, gives you a whole new wireless doorbell that transmits to the base unit. When someone rings that doorbell, it will shake your bed and/or turn a bedside light on and off. That doesn’t help us during the day – if we replaced our current doorbell with the new one, we’d never hear our doorbell ringing! Unless we happened to be lying in bed in the middle of the day, we’d never know there was someone at the door.
We puzzled over this for a while, and then I got the bright idea to have the audio alarm situated between our doorbell chime (in the hallway, by the smoke detector) and the smoke detector. I figured it would alert us to both the sound of our regular doorbell and the sound of the smoke detector.
We set the base unit aside while I went back to eBay, searching for an audio alarm transmitter for a decent price. Just by luck, I found someone selling a “Doorbell Notifier” that had the same item number as the audio alarm I needed. I had a suspicion they didn’t really know what they were selling. But it was only $9.95 with no bids, so I put in a bid and crossed my fingers. A few days later, I won the auction and the audio alarm arrived quickly in the mail. I opened it up and yep…it was the exact transmitter we needed!
We started testing it out and it would just NOT notify us when the doorbell rang. We could see lights flashing on the transmitter so we assumed it wasn’t defective, but we were really puzzled. Finally we decided to try it with the smoke detector and see if it detected that sound. Sure enough, our bed started shaking and the light on the base unit flashed. I took another look at the manual and noticed it said it would alert for any sound that lasted consistently for 12 seconds or more. It doesn’t sound like much, but 12 seconds is actually a long time for a doorbell – ours rings just for a couple of seconds. There was no way it would ring long enough to set off this transmitter.
Dave finally suggested that we put the new doorbell out near the original doorbell, with a sign. I didn’t want to say something like, “Deaf occupants – please use this doorbell at night” because that would be like saying, “Deaf occupants who can’t hear you, so go ahead and rob us blind while we sleep!” Instead I just made a small sign: “Please use this doorbell after 10:30 p.m.” If I saw something like that, I would assume there was a baby or small child inside and it was a quieter doorbell (or something along those lines). In any case, the chances of this doorbell being used are pretty slim, but at least we have it out there so the police won’t break down our door if they come calling again at 2 a.m. (Long story – a misunderstanding regarding my daughter Paige, but it was definitely not an experience we want to repeat since they were NOT happy that it took us so long to answer the door. Our now-deceased dog was the one who finally alerted us.)
I was thinking we did a pretty good job of securing our overnight safety at a reasonable price, but now I’m wondering if we should look into a storm warning system. On the one hand, we get lots of weather alerts in the middle of the night for thunderstorms and I definitely wouldn’t want to be woken up for those. On the other hand, if we have a tornado in the area, I would prefer to know before it bears down on us while we sleep. Looks like I have a bit more research to do!
I finally have pictures to share. They don’t start out graphic but there are photos of my incisions at the end here so if you are squeamish, run quickly!! 😀
This is the morning of surgery, just as we were getting ready to leave the house at about 4:15 am or so. I am in all my glory with no makeup on and no contact lenses in — I’m wearing my glasses. (Dave modified these while I was in surgery, so I hold them up to my face now. I only use glasses first thing in the morning and right before bed — otherwise I have my contacts in):
This is in the hospital, while I was waiting to be wheeled down to the anesthesia area. They have the IV in at this point but nothing “good” is going through just yet. 😀
I grabbed the camera and got a picture of Dave holding my purse, which is pretty much like asking him to wear a tutu and dance across the room for me. He usually acts like touching my purse physically burns him…ha ha! Here he is proudly doing his purse-holding duty for me:
This is after we got home — the same day I had the surgery. The head bra was so tight that I looked like I was frowning — I’m trying my best to smile and raise my eyebrows here! I’m still sleeping on the couch this way, because it’s the easiest way for me to keep my head elevated:
I’m wearing one of Dave’s old shirts in that picture, BTW. I found that t-shirts were not even an option — the neckhole isn’t big enough. But polo shirts work well because I can unbutton them enough to make a wide enough opening for my swollen head. Luckily we have a lot of those, between the two of us!
Okay…warning! Pictures of the stitches are coming up next. This is your last chance to bail!!
My left ear (next two pictures). This is just after we cut off the bandage. My face was amazingly swollen this morning but I think it’s a little better now. Anyway, left ear:
Now here’s my right ear:
And another photo of the right ear:
I look forward to posting pictures when my face isn’t swollen a mile wide — hopefully next week things will be looking a little better. 🙂
I am feeling quite a lot better tonight — my head isn’t quite as heavy and numb. I am still taking the Vicodin though and don’t plan to stop just yet. Breaking them in half is working out pretty well. It’s getting easier to walk around and sit up for periods of time without feeling totally exhausted. The doctor wants me to take it easy for 2 weeks though, so I don’t plan to jump up and start doing too much just yet. I’ll be happy if I can get some more computer time in over the weekend!
More tomorrow, I’m sure!! 😀
The head bra is gone!! What a relief. That has really helped with the pain, I have to say. It was so tight that originally I could barely open my eyes — I had to push it back off my eyebrows a bit. I looked like I was grimacing and pissed off — it was really comical. But it was really, really tight and I think that made my head ache more.
Dave cut it off last night but I was afraid to wash my hair just then. I waited until this morning. To be honest, it felt good to shower but also kind of scary. I am still nervous about touching my head and not sure where I should be touching or not. My hair is clean and no longer crusty (LOL) but it looks like crap. Actually, I don’t look like myself at all right now. My face is totally swollen — both sides of my face by the jaw line are completely puffed out. I still have a little bit of a crease in my forehead from the head bra. Yikes!! My hair looks frizzy and limp but that’s because I can’t style it. I guess it really doesn’t matter what I look like since I don’t plan to leave the house for quite a while yet!
So, three days later. My head feels very heavy and numb, but rarely am I in pain. If we had a laptop I would be posting a lot more but it really takes a lot out of me to walk over to the computer and sit here to type, so the long, detailed description of surgery day will be a post for the future. Right now I come over to the computer a couple times a day to check mail, mostly.
I’m still sleeping on the couch and imagine I will be for a while. The lower part of my back swells a little bit from having to lay on my back all night long (no sleeping on either side since both ears were done) but it doesn’t hurt — I just feel this swollen lump at the base of my spine. Weird! Dave is sleeping out in the living room with me — the first night on the love seat, all curled up (poor guy!) and now on the floor. What a sweetie. When he isn’t here, the kids take care of me — Paige is especially doing a great job and she even made me a grilled cheese sandwich yesterday!
Dave said it looks like there’s some kind of “second skin” over my incision area — no stitches or staples. He said the doctor mentioned the stitches were under the skin. I have a post-op check on August 8, which I think is about 2 weeks after my surgery date.
I feel lightheaded from the Vicodin but I’m still taking it regularly — I break the pills in half during the day. I may look really frightening 😀 but I actually don’t feel as bad as I expected to. I’m not nauseated or dizzy. I just don’t have a lot of stamina, so I am staying on the couch most of the day.
I’ve learned it’s not worth the calories to eat bread or any kind of bread item (sandwich, etc.) It has no flavor at all, even if I push it to the back of my tongue. So I’m sticking with soup, pudding, oatmeal, fruit — we had Italian ice last night and that was tasty. The front of my tongue is still a dead area, taste wise. But coffee tastes fantastic — I guess when I drink it, it goes straight to the back of my tongue. Yum!!
My activation date and mappings were set up yesterday….August 20th is the big day!! It’s also the day of Paige’s high school registration so we have to see if the school will make an exception for us and let us take her at 10 am. My mapping is at 1:00 pm so we have to leave at noon; the school has her scheduled to get her books, etc. from noon to 12:30. If they refuse to budge then I guess my mom will have to take her, but hopefully they’ll work with us. Anyway, I go back once every week for 6 weeks for my future mappings. Yay!
It’s hard to believe I’ll feel normal again, as I sit here with my heavy, numb head 😀 but I know things will be so much better in just a week, so I’m giving it time. In the meantime, have I mentioned how happy I am?? 😀 I can’t believe the surgery went so well and so quickly, with such minor side effects. I absolutely do NOT regret doing both ears at once, you guys. I admire those of you that have gone back for a second CI because I’m a wimp and wouldn’t want to go through this again…LOL!! I’m serious — I’m really impressed by you all. I actually hadn’t really thought of the extra recovery time, etc. when I first mentioned wanting to do both ears at once…and once I started to really think about it, it was too late to turn back. Now it’s behind me and whew, I’m glad!!
Well, I think I’ll head back to the couch. One of these days I’ll get to the details, I promise. I know my posts are usually SO long but I really wanted to remember every little detail when I started this blog, which is why I write those kinds of posts. I know some day I’ll look back and will have forgotten all those little things. I never want to forget! 🙂
Thanks for all of your support and good wishes — I can’t tell you how much it means to me!
As of tomorrow, I’ve had my CI approval letter for one week. So far, I haven’t gotten any new information. It’s starting to get frustrating, but I also haven’t been pursuing it as aggressively as I could so it’s just as much my fault as the doctor’s office.
On Friday, when I got the letter in the mail, it was too late to call the doctor’s office and they are closed on the weekend. I sent an email on Sunday to the audiologist who did my CI evaluation and who had written the letter for my approval request. She emailed me back on Monday of this week, very happy and excited for me, but mentioned she wasn’t in the office that day. She gave me the name of someone to contact in the office. Then she mentioned that she’s due on August 11 (she’s pregnant) and wouldn’t be the one doing my activation and mapping. That was a little disappointing because I really like her, but I’d rather start fresh with someone who will work with me from day one, rather than start with her and then have her go on maternity leave and have to get used to a whole new person for my audiology stuff.
By the time I received her email, it was too late to call the office (not that I would call – I would have Dave do it). Tuesday morning we faxed the approval letter along with a cover letter asking what the next steps are. They never responded, so Wednesday Dave tried to call them. We had a busy day with our candle business but we were done by 4:30, which we thought would be fine because they’re open til 5:00. Well, he got a voicemail message telling him to call back during regular business hours. (?!)
So we tried this morning (Thursday) at 8:30 – they open at 8:00, so we figured there would be no problem getting a hold of them. Nope – same message about regular business hours. I speculated that maybe they don’t answer the phones for the first hour and last hour of the day, as weird as that may be, so Dave tried again at 9:30. He got through but sat on hold most of the time. Finally the receptionist told him that the woman we were supposed to contact is busy and she’ll call us back at 1:00. I would be really surprised if she actually called.
The doctor’s office was CC’d on the approval letter and I actually assumed they would contact me as soon as they received it. Obviously, I was wrong!
Making Life Easier, Part 2
Back in April, after I first lost the rest of my hearing, I applied for a TTY from ITAC and for a few devices on loan from the Illinois Assistive Technology Program. I received the TTY within a week, as well as a visual alerting device that activates a light when the phone rings (I didn’t even realize that was part of the TTY program). We’ve been using the TTY more and more lately, especially Dave since he’s the one who makes most of the phone calls. I just hate the telephone – not only because it’s always been hard for me to understand on the phone, but also because I feel like it puts me on the spot. I get tongue-tied and nervous. I really prefer email, where I can think about what I’m going to say. Dave isn’t bothered by the phone except for the understanding part – he has as much trouble as I ever did with comprehension on the phone. So the TTY has been pretty amazing for him – he loves it!
We’ve only received one call via TTY so far, when my mom called about a month ago. I can tell she really doesn’t like it though and she hasn’t called since – she prefers to just stop by and talk since she lives nearby. She’ll call and talk to Dave or the kids, of course, but if she wants to talk to me, she comes over. Our TTY conversation was awkward, and she kept talking to the operator instead of me. For example, she’d say “Tell her I’m picking Paige up on Saturday” and then the operator would have to tell her to talk to me directly. I know it really, really bothered her to have a third party involved in the call.
I’ve signed up for Web CapTel and I might try calling her that way. I have to do it when Dave is home because apparently they call your phone first, and I can’t hear at all so I can’t answer the phone. I mean, I don’t know if they actually say anything when they call me, or if you just pick up the phone and don’t hear anything on the other line while they connect you. So I’m going to have him pick up the phone, for the first time anyway, and help me in case things go wrong. If it works, though, then I can actually speak to my mom and her part of the conversation will be typed back to me – I think this might make things less awkward for her.
As far as the loan items go, I never received them or heard at all from the IL Assistive Technology Program so that was a bust. I was pretty disappointed because it looked like a great way to try out items that would be potentially expensive purchases. If they were really helpful, then I’d know they were worth the money. Money is just too tight for us to go around buying all these cool devices they have for the deaf. It’s nice to know they exist, but they don’t do me any good when I can’t afford them!
Basically I’m getting by with the help of my family and our dog alerting me. The door alert device is affordable but we haven’t figured out which one would be best – I think you can get the kind that’s hard-wired into your doorbell, or just simple ones that might be battery-activated. That’s not much of an issue for me because I’m rarely home alone and when I am, Toby (our dog) goes crazy when someone’s at the door. I can see him barking and freaking out and know what’s going on.
I’ve been continuing my sign language education and really enjoying it! It goes very, very slowly though because I have to fit it in when I have some free time. The lessons I’m following online (at Lifeprint.com) sometimes show signs differently than the way Dave does them, so after I finish a lesson I go through the signs with him. If he does them differently, he shows me so that we can be consistent with each other (I don’t imagine I’ll ever sign much with anyone other than Dave). I’ve been watching ASL vlogs when I can, if they are captioned, so I can get used to reading signs. Most of the time they go too fast for me but I’m starting to catch signs here and there, which is exciting!
Fingerspelling is getting a lot easier, and it’s really been helpful at times. During Eric’s college orientation I did a lot of fingerspelling to Dave because I can’t tell how loud I’m talking, and I didn’t want to be shouting to him during a presentation. It’s nice to have that silent mode of communication!
After I read Beverly Biderman’s book, “Wired for Sound”, I started to explore Cued Speech. She mentions it at the back of the book in the resources section, and it piqued my curiosity. From the descriptions I read on the websites I visited, it sounded like something that would be faster to learn (compared to ASL) and would be helpful for someone like me, who depends on lipreading, and someone like Dave, who can hear but has a severe hearing loss. We’re still continuing our sign language studies, of course, but we thought it would be good to have lots of communication methods at our disposal. So I set out to find learning materials for Cued Speech.
It’s a lot more difficult to access information online, and there were no classes that I could find. I decided to check our local library – they didn’t have any Cued Speech materials, but they have a great Interlibrary Loan program so I requested the Discovering Cued Speech DVD set. It took about 2 weeks to receive (it looks like it came all the way from Kansas!) but we finally got a call letting us know we could pick it up. It’s fantastic! There’s 2 DVDs, a workbook and a little sheet with the handshapes and locations for quick reference.
We do a review in the morning and then a new lesson at night. It’s been fascinating to see how many sounds look so similar on the lips – even after all these years of lipreading, I never realized that! We’ve only had the set for a couple of days and already I feel comfortable with what I’ve learned. We get to keep it til July 10 and I really think by then we’ll have the hang of it. I’ll get the workbook so we can keep reviewing after we have to return everything. It’s really exciting! I had heard of Cued Speech before and just never took the time to find out what it was. It’s really turning out to be a valuable tool for us, along with sign language.
Eric likes to joke around and say it looks like we’re throwing gang signs. I guess we better be careful using Cued Speech when we’re downtown…who knows what we might advertently “say”! 😯
I’m in the middle of a long post about going to Eric’s college for freshman orientation, but I had to pop in to say…my cochlear implants just got approved!!!!
Paige went out to get the mail and the letter was there. It’s kind of hard to understand (and that’s saying a lot because deciphering insurance used to be part of my job when I worked in Human Resources) but I think it’s approved BOTH cochlear implants. It says:
Coverage Decision for Cochlear Device Implantation – 1 time(s): Coverage for this service has been approved
and then it says
Coverage Decision for Cochlear Device – 2 time(s): Coverage for this service has been approved
It also gives approved coverage decisions for “Comprehensive audiometry threshold evaluation and speech recognition”, “Diag analysis of cochlear implant” 1 times(s) (and it has that listed twice, on separate lines so I assume it’s for each CI), and then “Treatment of speech, language, voice, communication, A/O Auditory Process Disorder”.
So I don’t know 100% for sure, but it sounds like they’ve approved the simultaneous bilateral CI’s…I assume that’s why they’ve approved one implantation and two devices.
Whooooo! Dave is at the dentist so he doesn’t even know yet!
YAY YAY YAY 🙂
Waiting is hard. It feels archaic, compared to the instant gratification I’ve gotten used to in the internet age. Although I can access my medical claims online, I can’t access anything that shows how the preapproval process is going for my cochlear implant(s). All I can do is wait for a letter to arrive in the mail.
(Side note: I’m typing this with a view of the kitchen reflected in the little mirror I’ve set up next to my monitor. I just watched one of our cats, Allie, jump up on the kitchen counter (which is very, very rare for her – I think I’ve only seen her do this one or two times). She walked over to a basket of cherries, sniffed, then grabbed one by the stem and jumped down with it. She’s been batting it around, picking it up by the stem and flinging it, having a grand old time. Her mom, Maxie, came over to see what was so exciting, and gave the cherry a couple of bats too. I didn’t even have to turn around to watch this whole scene play out!)
So anyway, people ask what’s going on or how long it might be before I can hear again. I have no idea! I still marvel, though, at the fact that the question is actually possible. “How long until you can hear again?” How amazing that it’s even an option!
Summer is here, the kids are out of school, and our days are pretty lazy. Lately I seem to spend them trying to avoid one social event or the other. Although my immediate family has been suitably impressed with my lip reading skills, they don’t extend well to long conversations with people I rarely see or have just met. The only exception has been at the doctor’s office, but I assume that’s because everyone there is used to talking with people who are deaf or have some degree of hearing loss.
My daughter is gone with my mom and aunt (mom’s sister) on a cruise right now. It’s an early 14th birthday gift to her from my mom – she likes to do a big vacation type trip when they become teens. Paige’s trip got postponed one year for some reason I can’t even remember now; Eric chose a trip to Las Vegas when he turned 13. Anyway, my aunt is in town and I only get to see her every few years since she lives in Tennessee. She’s also got a hearing loss and wears a hearing aid; I know she has trouble hearing when we have conversations because I can recognize the confused expression and bluffing that I’ve used all my life reflected on her face. Now it’s even more difficult for us to talk – I’m not used to reading her lips so she talks, I don’t get it, I bluff and say something I hope relates to the conversation, then she looks confused and she bluffs. Then I wonder…is she confused because I gave an inappropriate response, or is it just that she didn’t hear my response?!
My mom’s got a 70th birthday coming up and my brother is throwing her a surprise party. Her birthday is actually the day she returns from the cruise and her party is two weeks later. My brother asked if I was okay with a party-type situation or if they should put it off until I get my CI. I told him no, don’t hold back because of me – who knows how long it might be before I actually get my CI and after that, how long it might be before I can actually hear things? But it was nice of him to even consider that it might be hard for me. I did tell him I probably will leave after an hour or so, just because it’s exhausting trying to lip read for long periods of time.
I’m actually terrified of this party, to be honest. There will be 20 or 25 people there, including family members I usually see once a year, if even that. I’m assuming the family members know that I’m completely deaf now (if my mom told them, since they talk on the phone fairly frequently), but it’s one of those weird things that’s hard to bring up in conversation without it being awkward. Obviously I’ll have to bring it up, so they aren’t surprised if I’m not following what’s being said. It’s also possible that they’ll all just avoid me, assuming it will be too hard to communicate with me. Actually, that would be just fine with me – I’ve already told Dave that his job is to sit with me in a corner, talking for an hour, until we can leave!
Seriously though, I know I can’t do that. But ugh, it sucks to be so stressed out over something that should be fun and enjoyable! I’ve never liked parties and rarely go to them, but mostly because I suck at small talk. I love to engage one person in a long discussion about whatever we’re both interested in, but I dread and loathe flitting from one person to the next, making small talk for 15 minutes or whatever. I guess I developed this preference because of my hearing loss but it’s totally affected my social development and now I figure, why put myself in a miserable situation? But some parties just can’t be avoided.
I’m trying to keep this summer as void of social engagements as possible, other than going out with my husband and kids. We did actually go to a restaurant for the first time since I lost my hearing – we took Eric to his favorite pizza place for his birthday last week. Ironically, I think I did better in that situation than Dave did. I was with my family, reading their familiar lips, with only my crazy tinnitus to distract me. Dave, with his severe hearing loss, had to deal with all the background noise of the restaurant and the fact that he doesn’t read lips as well (although he does better than he gives himself credit for). The only time I had trouble was periodically with Dave, since he was sitting next to me and I really need to be fully facing someone to read their lips well.
Next week, though, we’ve got Eric’s college orientation day. It’s an all-day-long event that I had been so looking forward to before I lost my hearing. Dave and I will go to the parents’ session and Eric will go off with the other kids, and we’ll meet up for lunch in between. I did write and ask if they had any suggestions for me, since I don’t know sign language (to benefit from an interpreter), but they were at a loss as to how to help me. There will be written information handed out, though, and a walking tour. I’ve been on one tour already when we visited the university over the summer, so I won’t feel like I’m missing out on too much of the dialogue there. For the rest of the time, I’m just going to lip read when I can and basically just take it all in visually. I’m hoping we get to see his dorm, since we didn’t get to do that last summer.
Dave and I actually thought about buying a small laptop, like the Asus Eee, so he can type into it periodically and pass information on to me that way. The only problem is that he’s also hearing impaired so he’ll probably be just as lost as me – usually in these situations (school orientations and open houses) he kind of zones out while I’m the one listening and lip reading. 🙂
Unlike the prospect of going to a party and having to socialize, this doesn’t stress me out. I know I wouldn’t normally talk to anyone but Dave anyway, so I don’t feel like I’m going to be in this potentially embarrassing situation where I have to try to bluff my way though a conversation. It just bums me out a little bit, to know I’m going to miss most of what’s being said. I’m still looking forward to it though, just because it’s exciting for me…my baby going to college! I never went to college so it’s all new to me, and I’m glad he’s getting this chance.
So that’s where I’m at. Kind of a weird limbo. But still, the first thing I thought to myself when I woke up today was, “I love my life.” And I do.
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. 🙂