Monthly Archives: June 2008
I think it’s been happening for about 2 weeks now. The first time it happened, it startled me as much as it would if I could suddenly hear again.
Have you ever used one of those metal noisemakers they give out at New Years parties? The ones I remember were rectangular with a little spinning handle on one end. You held onto the handle and with a flick of the wrist, the metal part would spin around, making a weird kind of clicking noise. It used to remind me a little of the sound it makes when you put a playing card in the spokes of a bicycle wheel and ride around.
Well, lately my right ear, which has been completely deaf for over 15 years now, comes to life at times with short tinnitus bursts that sound exactly like one of those noisemakers. It never lasts very long, but it’s very loud!
I never really thought about which ear I was hearing tinnitus in. It just felt like it was in my head in general. But now it’s very obvious that the musical constant tinnitus is coming from my left ear. My right ear has only recently begun chiming in. Now I have tinnitus in stereo.
There can be 3 or 4 different sounds going on at once. I get the constant sound from my left ear and periodic “boop”, “whirrrrr”, “click click” from the right. It’s so amazingly obvious that it’s coming from my right ear that it was almost exciting the first few times I heard it! It makes me realize how long it’s been since I heard things from both ears at the same time.
Even though I was an adult, in my 20’s, when I was wearing a hearing aid in my right ear and my left ear was unaided (even though I had a moderate hearing loss at the time), I can’t remember hearing sounds in both ears. I really can’t imagine hearing in stereo.
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 sitting here trying to think of a short, succinct sentence to describe Freshman Orientation Day at the public university my son will be attending this fall. Words fail me.
I’ll go the long, rambling, wordy route instead. First off…WHY? Why do they schedule such an important day to start so dreadfully early?! Sure, they offer coffee and Danishes and juice but what we all really needed was a direct IV of caffeine in order to be alert for the entire day. Even though I went to bed earlier to accommodate my 5:45 am wake-up buzz (love that vibrating alarm clock!) it made no difference. By 1:30 pm, my body was dragging and my mind was wandering. I was ready to cry from exhaustion by 9 pm, and was actually in bed, asleep, by 10 pm. I know Eric only got a few hours of sleep the night before even though I told him over and over that we had to leave by 7 am, so be sure to get to bed early.
The day started at 8:15 am and the school is an hour away. I need at least a good hour or hour and a half to fully wake up, eat breakfast and get ready. I debated wearing my hearing aids…I actually put them in the day before, just in case they were giving me some kind of vibrotactile help that would be apparent if I put them in after going for days without them. Well, no. They make no difference at all anymore, and I’ve finally accepted that. (I think – to be honest, I woke up today and put my hearing aids in on autopilot. I had NO idea I had them in until around 10 am when I realized it felt like something was in my ear. I put my hand up to my ear and was stunned to feel my hearing aid there!)
So anyway, we made great time and got there with plenty of time to spare. I had been kind of drilling Eric on the things he needed to do, since the kids and parents had separate sessions. He’s got ADD and really awful organizational skills. (I made him leave his laptop in the car so it wouldn’t distract him.) I especially went over the fact that he should take the English competency exam and also gave him the details for opening his first checking account. (A local bank offers free student checking accounts and it was a great deal.)
After we checked in, we wandered over to the auditorium. Eric had gotten a red backpack full of materials and we received a parent handbook. I was dying to know what was in the backpack. I’m one of those people who loves literature and supplies – getting school supplies every year was always a highlight for me. If I’m given a stack of brochures and literature to read, I always read everything. So this backpack full of stuff was like a treasure chest to me! Eric, of course, could care less and couldn’t even be bothered to open it up and look.
We grabbed seats in the front row, in front of the podium. The people speaking all stood at the podium and didn’t walk back and forth across the stage, which was a good thing. However, I really couldn’t lipread them at all. They talked too fast, and in the case of one woman (who did the majority of the speaking), she was just slightly taller than the microphone. The microphone completely obscured her mouth. (We eventually solved this by sitting more to the left of her rather than directly in front.)
We did a lot of wandering around – we’d leave the auditorium, go to a room in another area of the building for a more personalized session (for instance, they separated us based on our kids’ majors so that we could find out the requirements for a degree in that major), then we’d go back to the auditorium. Amusingly enough, nobody but us sat in the front row – it was not a problem at all to get “premium” seating! Really though, it was impossible to catch 95% of what was being said. Dave had just as hard a time as I did but he could get the gist of the subject, so he would pull out a notepad and make quick notes: “anecdotes about family involvement”, “talking about graduation requirements”, that sort of thing.
Eric was only with us for a short period, while they welcomed all of us. Then they had student leaders, holding up colored signs, gather the kids by their major and lead them out of the room. I think both Dave and I felt extremely lost once Eric left, because he was filling us in on what was being said. As long as we were just sitting in one place it was fine – I could look at the large screen and read the presentation stuff up there, try (in vain) to lipread the person speaking, and just kind of look around the auditorium. The panic set in whenever they told us to get up and go somewhere else. Dave couldn’t understand what they were saying and of course I couldn’t either, so we were clueless.
The first “get up and go” event was when they had us go to separate rooms based on our kid’s major. They had people with colored signs that we were supposed to follow. From reading the parent orientation brochure, I figured out that our name tags had a colored bar on them that corresponded with a field of study. So we had brown bars on our tags, for Visual and Performing Arts. The signs were also colored and I realized they corresponded to our tags (this information was spoken, I’m sure, but we didn’t catch it). Dave tapped me to get up and follow him, and I realized we were following a red sign not a brown one. We were totally lost! Finally we found somebody who directed us to the right room. That was a little nerve-wracking and set us both on edge, but once we settled down in the room we developed our little routine where Dave would jot notes down to me about the topic of conversation. We also did a little signing, mainly fingerspelling.
We went from the Arts advisory session back to the auditorium, where a couple more people spoke and them some current students answered questions that were asked of them. Again, none of this was comprehensible for us. Now that I’ve been through it, I can see that CART would have been immensely helpful during the auditorium sessions. When we signed up for this, though, we had no idea how the day would be set up and I didn’t think it would be possible to use CART services. I think I imagined us walking around all the time – I didn’t realize so much time would be spent sitting for presentations in the same room.
After that next auditorium session, we were told to pick from 5 or 6 areas of interest and attend one session (again, in another part of the building). We chose computers and technology, which was being held in the basement. The guy leading that group happened to be standing right in front of us with his little sign, so Dave was able to catch the fact that we should follow him and I was able to read the sign, which said “Technology”. We went down to a computer lab and once again, no idea what the guy was saying. I don’t think Dave caught anything either, really.
From there we followed everyone and went to a big room with a bunch of tables set up, where they were giving information on all kinds of stuff – study abroad, parent’s association, the bookstore, health services, sports, honors, help for students with disabilities, etc. etc. It was kind of like a job fair but for information and not jobs. Of course, I couldn’t hear anything but I’ve been in situations like that and I know how noisy they are. Dave couldn’t hear anything through all the background noise. We wandered around a bit but neither of us wanted to have to actually talk to anyone and that’s what the whole point of this was – to chat with the people at each booth.
As we meandered around in a circle, making sure not to make eye contact so people wouldn’t try to talk to us, I realized that I recognized somebody. What are the chances?! Here we are at one of the biggest public universities in Illinois, an hour from home, and I see somebody I used to work with. She was actually my closest friend when I worked there – it was the last job I held outside the home. I was just horrified – the last thing I wanted was to have to make small talk with her and explain that I was now completely deaf!
I did a quick about-face and steered Dave in the opposite direction, and she didn’t see me. Whew. As we were standing there wondering what to do next, a student came up to let us know we could go to lunch any time we wanted. He motioned toward the stairs so we figured it must be upstairs somewhere. We walked into the cafeteria and saw signs listing the entrees available. I had no idea what we were supposed to do, so I just followed the people in front of us. We had been given swipe cards, kind of like credit cards, when we checked in and everyone was in line, handing them to an attendant. I assumed this was how we “paid” for our food.
After that, things split off into two lines and again, I was completely confused. I grabbed silverware and an empty glass, and a fruit plate as we walked past a dessert section. I couldn’t see where the soft drink dispensers were – so far we’d just passed a machine that dispensed milk. I could see that we were heading towards a place where they were serving the entrées and I thought, “Oh no. I have to talk to someone!” I knew I wanted chicken tenders and not a hamburger, but I couldn’t figure out what it came with (or if I could choose all of the sides…not that I would’ve done that!) Dave got mac and cheese with his chicken and he was ahead of me, so when it was my turn I just said that I was having the same as Dave. When I didn’t get my plate back after the mac and cheese, I realized they were going to keep putting more sides on it. I waved my hands “no” and got my plate back. I was pretty hungry and probably could’ve eaten more if I could’ve figured out what else there was, but I was too stressed out trying to figure out the whole “ordering” procedure that I just stopped there.
Eric happened to be sitting right where we ended up after we got our food, which was a happy coincidence. We got seats and Dave went off to get pop for us. Lunch was nice – the food was good and it was fun talking to Eric, who seemed to be enjoying himself. He couldn’t tell me what he’d actually been doing, but when I asked specific questions (“Did you pick your classes yet?” “Did you open your checking account?”) he finally started giving me some information. I got a chance to peek in his backpack and then suddenly he was standing up, telling me he had to go. I realized there was a podium in the lunchroom and the same woman from earlier was speaking. She must have been telling the kids it was time to go to their next session. (They had gotten to the cafeteria before us.)
Dave and I finished eating, and the woman started speaking again. Dave couldn’t understand anything that she said. I was starting to get stressed out because it was obvious we were going to be broken up into groups for a walking tour, but we couldn’t figure out what group we would be in. The orientation brochure said it would be based on the numbers on our nametags, but we had no numbers! We got up to walk over closer to the podium – I was going to wait for the woman to stop speaking and then ask her where we should go. (Hopefully the groups wouldn’t all be so far gone at that point that we couldn’t catch up to them!) Suddenly Dave said, “Oh! We go with group 10 – she just said if you don’t have a number, go with group 10.” It’s amazing how incredibly stressful these kinds of things are – it really puts a damper on things when you’re constantly confused and not sure what you’re supposed to do.
The walking tour took a long time but it was nice. I could read our tour guide’s lips every now and then, but we’d been on a shorter version of this tour over the summer (when I could still hear) so I already knew a lot of what we were seeing. One thing that was new was our visit to the Health Services department, where the kids can see a doctor, get prescriptions, etc. I had brought Eric’s immunization record with me, just in case there was an opportunity to drop it off. The girl who spoke to us at Health Services was really, really easy to lipread. Apparently she had a really soft voice, though, so Dave wasn’t able to catch what she was saying. Suddenly I grabbed his arm and said, “We can drop off the form here!” He was skeptical but sure enough, that’s what she had said and we were able to give the form to a worker at the front desk. Mission accomplished!
Every now and then our tour guide would try to get us to do a little chant with him for some kind of contest we were going to be in later. Of course, I had no idea what he was saying so I stayed silent, but every time the group went through a little practice session I was cringing, hoping he wouldn’t single me out and say, “Hey, you aren’t doing it!” It was like hoping you wouldn’t be called on in school. Luckily he never did that, and if he had, I was already prepared to explain that I was deaf. (I was hoping it wouldn’t come to that, because it probably would’ve embarrassed him if he’d singled me out and then I dropped a bomb like that on him. I’ve had that happen before – people saying, “What are you, deaf?” as a joke, and then when I say “Yep!” they are just mortified! They’re never doing it to be mean, so I always feel really bad but there’s no other way to say it. LOL)
After the tour there was a little information session like a Jeopardy! game in another auditorium. That was cute and fun – the questions and answers were displayed on a screen so it was easier to follow along. This was when the ‘contest’ came in – each tour group was supposed to yell out their chant, and try to be the loudest in the room. I stood up when our time came, but I kept my mouth shut!
After that, I caught sight of my friend again (the back of her head). I looked the other way and held back a bit, but this time she saw me – she came toward me and grabbed my arm with a huge grin. We hugged and she asked how I’d been, and I immediately told her what happened with my hearing. Since she used to work the switchboard and I often had to cover for her, she knew about my hearing loss (and how awful it was for me during those switchboard shifts!) She was really concerned and surprisingly, she knew what a cochlear implant was. I caught that she said she knew because of her sister, but I’m not sure of the rest of the story…if her sister has one, or works with people that have them, or what.
We didn’t talk long – the parent session was over and it was time to walk back and meet up with our kids. I suspect we would’ve walked together and caught up if it wasn’t for the fact that I couldn’t hear anything. Walking and talking is really, really hard for me – I have to be looking at the person speaking, so I can’t watch where I’m going. If the sun is out, it’s usually hard to look right at someone because the sun gets in my eyes. I really, really hate having to have a conversation now when I’m walking outside!
That was pretty much our day. We got back to the main building around 3:30 and Eric wasn’t done til after 5 pm, so we wandered around, checked out the bookstore, etc. He was one of the last kids to finish. Want to know why? Because he completely forgot that I’d completed all the paperwork for his checking account (even though I went over it with him twice) and he filled it all out again from scratch. Then he forgot to give them the money to deposit into his new account, so we had to go back and do that. He also had no idea when they were offering the English competency exam so he didn’t take it and just signed up for English 103 instead. Crazy kid!
We had an hour’s drive home and by then I was absolutely worn out…exhausted from getting up so much earlier than usual, and then expending so much energy just trying to figure out what was going on, where we needed to go, what was being said – it was completely draining.
Yesterday I sat down with that backpack of his and read through all the material. That was all I really cared about … give me literature! I can figure it all out if I can read it!
Next up: Paige’s high school orientation in August. Thankfully the school is a 5 minute drive from here and I already know what’s going on, since Eric just finished four years at this school.
I’m ready for a break now…give me a book and let me just sit here in my house, where I know exactly what’s going on!
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
A thunderstorm woke me up this morning. It felt like someone picked the bed slightly up off the floor and then let it down with a thunk, followed by vigorous shaking. One of our cats, Beanie (aka Sabrina) was sleeping with me at the time and it freaked her right out – she sprung up and leaped over my legs to get off the bed. Between the bed shaking and the cat gymnastics, I ended up wide awake at 7:30 am. (One of the luxuries of summertime…unless we have a morning appointment that day for something, we can sleep in!)
I was confused at first until I looked out the bedroom window and saw the neighbor’s tree dancing in the wind. I put my glasses on and watched the storm from the comfort of our bed – the sky lighting up with lightning, the tree bending and snapping in the wind. It looked like some kind of primeval dance, and it was even more beautiful because, with no sound to distract me, I was totally focused on the movements of the branches and leaves.
I love thunderstorms. Bad weather doesn’t scare me – I think it’s fascinating. (That said, I’ve never been the victim of a tornado or hurricane…I’m sure my feelings about bad weather would change if I had.) When I was a kid, my parents would open the garage door, set up lawn chairs and we’d watch the storm play out from the safety of the garage. I absolutely loved doing this – watching the lightning, hearing the thunder and feeling it shake the ground, smelling the rain, hearing it hit the driveway and street. When my kids were about 4 and 8 years old, I thought I’d pass the tradition on to them. We set up their little chairs in the garage, opened the door…and they were terrified. They hated every second of it. After that very brief episode, they never showed any interest in watching a storm with me. In fact, Paige was really frightened by thunderstorms for a long time and I could never understand why. She could see that I wasn’t nervous at all but that didn’t matter – she just hated storms!
Now that storm season has started here in Illinois, I’ve been grieving a bit over the fact that I can’t hear thunder any more. I really have never been able to hear rain – I know I heard it as a kid, out in my garage, but never inside the house as it hit the roof. But I always heard thunder, and I could actually hear lightning too – it would crackle like static in my hearing aids. I’d hear the crackle and know that a few seconds later I’d hear the boom of thunder. Oh, I miss it! Darn it.
The weirdest things give me such a sharp stab of sadness now when I don’t hear them. It’s not the obvious things anymore, like the voices of my family or the meows of my cats. Now it’s the really mundane things that I miss. When I’m operating the microwave, I realize that I don’t hear the beeps of the buttons as I’m pushing them. I don’t know if I’ve pushed the “start” button hard enough to actually start it, so I have to watch and make sure the microwave starts its countdown as it cooks. And of course, I never hear the beeps when it finishes.
I’m working out again (it’s been a while ::cough cough::) and none of the workout videos are captioned. I can’t even think about doing the yoga videos, because I can’t contort my body and keep my eyes on the screen to lipread the instructor as they tell me what to do. I’ve got my regular workout dvds pretty well memorized, so now I work out with the TV on “mute”, so it doesn’t bother anyone else in the room. I do my weight lifting, my leg exercises, my aerobics in total silence. Well, except for my tinnitus…and unfortunately, it doesn’t keep any kind of beat worth exercising to!
I can’t tell if my voice is getting gravelly, the way it does if you need to clear your throat. I try to be mindful of how my throat feels as I talk, clearing it if I think I might sound hoarse. I can’t tell if I’m talking to my animals in my usual high-pitched voice…you know, the way you talk to babies. At first I think I was talking in kind of a monotone, and they weren’t responding to me the way they used to. I made more of an effort to change my voice and I can tell when I’m talking in my “higher” voice – the cats respond instantly. It’s so weird not to know if I’ve got inflection in my voice or not.
When I read about the sounds that people with cochlear implants are hearing for the first time, I think, “Oh! I remember hearing that.” It’s still hard to believe that just 2 months ago, I could’ve heard the keys on my keyboard as I type this. I could hear my dog’s nails clicking on the tile floor in the kitchen, hear his tags clink against the water dish as he (noisily) slurps water. I could hear motorcycles drive by in the street, hear the garbage truck as it approached (and run out to set the bins at the curb if I’ve forgotten). I could hear the turn signals clicking in the car and hear gravel crunching under the wheels. These are not beautiful, awe-inspiring sounds but they bring fullness to the day, give a 3-D aspect to otherwise mundane moments. I miss them.
I still forget that it’s permanent. This morning I got out of the shower (when I normally wouldn’t wear hearing aids, back when I wore them at all) and started to tell Dave, “Oh, hang on a second…” when I couldn’t hear him talking to me. I was going to walk to the bedroom and put my hearing aids in. Then I remembered.
I didn’t finish the rest of my sentence: “…let me put my hearing aids in. I can’t hear you.”
I’m in the kitchen, rinsing dishes and loading them into the dishwasher. I turn around to check the countertops in the kitchen and make sure I didn’t miss anything…and glance down in the process. Gah!!
“SPIDER! SPIDER! SPIDER!“
Dave comes running in from the living room, glancing around wildly.
“There! There!” I point to the floor, hopping backwards just in case it decides to jump at me. (Spiders are unpredictable and I can’t stand them…can you tell?)
Dave takes care of the spider problem, then turns to me and says:
“I thought you said FIRE.”
We go through this a lot, since we both have hearing loss, and even after 10 years of misunderstandings, it still cracks us up!
Dave went on to say that he couldn’t figure out why I was being so calm about a fire in the kitchen. I said, “Calm?! I was screaming!” I guess maybe I’m not as loud as I think I am!
Then he also pointed out that he couldn’t figure out how I managed to create a fire in the dishwasher.
All I can say is, if he ever loses all of his hearing and can’t hear me screaming when I see a spider, he’s going to need a pager or something so I can buzz him whenever I need him to do Spider Duty!** ::shudder::
** He saves them, BTW. He actually likes them, so unless he deems them dangerous or poisonous ::double shudder:: he puts them outside.
Ever since I went completely deaf, I wake up in the morning and put my hearing aids in. Every morning, without fail. This is as helpful as putting in my contacts after I’ve lost all my vision, but still I persist.
The first week or so after I lost all of my hearing, I actually was still able to hear certain sounds if my hearing aids were in. Well, I can think of two sounds: our dog barking, and the high-pitched beep that my electric scale makes when it’s first turned on. (I use it to measure fragrance oil when I’m making candles.) That helped perpetuate the feeling that I was getting some help from hearing aids. But within a week, even those sounds were gone.
For a while I turned them up as high as they would go, and that would help me get some vibration in my ears from super-loud noises. That didn’t last long though, because Dave would tap me and say, “You’re squealing.” Take the hearing aid out, turn it down a bit, look inquisitively at Dave. He shakes his head; nope, still squealing. By the time I got it to stop squealing, it was back at the old volume level.
And to be honest, even at the highest level they stopped giving vibrations eventually. So here I am, wearing these totally useless hearing aids in my ears day after day. It’s kind of funny, considering most people avoid wearing hearing aids even if they help them hear. I remember my grandmother leaving hers in her dresser drawer all the time. I know many people are self-conscious about how they look or hate the way they make things sound.
I loved my hearing aids. I put them in as soon as I woke up and wore them until my head hit the pillow at night. I was loyal to the brand (Beltone, which I know many people scoff at) and the type – I wore analog hearing aids all my life. Those bi-CROS hearing aids were the best things I ever purchased and I absolutely treasured them and they way they made things sound.
Today is the first day I faced reality and didn’t put my hearing aids in. They’re still in the bedroom in the little box next to my bed. I started putting them there back in 1985, when I got my first cat. Before Bear came along, I used to just lay the hearing aids on the nightstand. (For some reason, I never used one of those Dri-Aid containers – nobody ever told me about them, I guess.) Well, Bear decided that ear molds were tasty and dragged my hearing aid off the nightstand one night. I was totally panicked when I woke up the next morning and couldn’t find it! I eventually found it under the couch but I did need to get a new ear mold. After that I started keeping my hearing aids in a little decorative box with a lid, to keep them safe from earwax-loving felines. (Bear, by the way, lived to nearly 20 years of age – he was an awesome cat!)
I can’t believe how naked I feel. For the first time in nearly 40 years, I’m not wearing a hearing aid in either ear. I will never wear hearing aids again.
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.
When my kids were born 4 years apart, it never dawned on me that one day I would be attending two graduations just a couple of days apart. The schools here are broken up into elementary (K-3), intermediate (4-5), middle (6-8th) and high school (9-12). They have a big ceremony for 8th grade graduation, which just blew Dave’s mind – the school he went to was small enough that all grades through high school were in the same building and there was no such thing as 8th grade graduation. Paige’s class this year had around 260 kids, and Eric’s high school graduating class was around 600 (maybe a little more).
They both graduated in June – Eric on June 1 and Paige on June 4. (In between, we had Eric’s 18th birthday on June 3 … that’s why I haven’t been writing as much the past week. Busy, busy!) Normally I can’t hear anything at these kinds of ceremonies anyway – they’re always held in a big auditorium or gymnasium where sounds boom around, there’s tons of background noise, and we’re too far from the stage to actually see the person speaking (for lip reading purposes). But usually I could catch enough words to get the gist of what was being said, and of course I could chuckle in the right places when I heard everyone else laughing, I clapped when it was appropriate, etc.
Being completely deaf, however, is a whole different experience. It wasn’t until about a month before the actual graduations (actually, even less time, more like 2 or 3 weeks) that I realized I should ask for some type of accommodation. When I was merely hearing impaired, it would never have dawned on me to ask to be seated closer so I could read lips. Now that lip reading was my only chance at understanding, though, I wasn’t afraid to ask. Actually, I did ask for CART to be provided but neither school said they could do that. The high school said there wasn’t enough time to get it, and the middle school actually never responded to any of my emails – finally, a couple of days before graduation, my husband called them and they said sure, they could give us a spot up front so I could lip read. They were clueless about CART. (We did also email a local CART provider to see if we could get CART set up ourselves, but they never answered us.)
Well, I figured, no big deal. It’s not like I ever used to hear much at these things anyway – the main thing is getting to see my kids walk across that stage and get their diploma. The two graduation ceremonies, however, were such completely different experiences that it was startling and really opened my eyes.
We attended Eric’s high school graduation at the local community college, in their Physical Education building. My mom, Dave, Paige and I slowly made our way through the throngs of people to the front of the room, where we noticed “reserved” signs on folding chairs in the front row (albeit off to the very left side, not in the center in front of the person speaking). We weren’t sure if these were meant for us, because the ‘audience’ area was roped off and to the left, right and rear of these center chairs. I could see name tags taped to the center chairs starting in the second row, so I assumed this was where the graduates were sitting. There was a clearly marked Handicapped area to the left in the audience area, in the front 2 or 3 rows, and I thought maybe that’s where we were supposed to sit. I was looking around, trying to figure out who to ask when a woman noticed my confusion and asked if she could help me. I started to introduce myself and her whole face lit up while she nodded – she realized immediately who I was. It was obvious she was taking the time to speak slowly and clearly, and she walked me and my family over to the reserved seats in front of the graduates. It was very nice and handled really well.
There was a chair right in front of us (facing us) and we found out shortly that a sign language interpreter would be sitting there. She came in about 10 minutes after we did and introduced herself. She asked if I signed and I told her no, but I did read lips and did know a few signs (from Dave) – I just gave her a very brief explanation of my recent hearing loss. She was really nice and very easy to lip read. I realized that reading her lips would be 100% easier than trying to lip read the different people speaking, who were off to my right on the stage.
After the building was completely filled with people, a deaf couple did come in – they were the reason the interpreter was there. For some reason they sat behind us even though there was room up front next to my mom. At first it made me feel bad – I wasn’t blocking their view but I felt like they should be up there with us where it was easier to see. For whatever reason though, they seem to have asked for the seats to be in the second row (they had been set aside for them) so I stopped worrying about it. The funny thing was, once they arrived the interpreter would occasionally ask them questions (for instance, if they knew how many kids were in the graduating class) but since they were right behind me, I didn’t know if she was talking to me or to them!
Anyway, there was a huge bank of speakers right in front of us, suspended from the ceiling. My mom was grimacing once the band started playing (they were also right in front of us), saying it was so loud. She actually asked if I could hear it. LOL! I had no idea they were even playing – I was reading through the program and when I looked up, I realized the band members had raised their instruments and were playing. I could feel the vibration periodically from the drums, but that was it.
I had no idea when they stopped playing, but the interpreter began clapping and that was my cue to clap as well. I read her lips (and watched her signing, which was like a little lesson for me) throughout the whole ceremony. At one point a musical selection was performed (with vocalists) and she signed the words as they sang. I didn’t get all of what she said – my lip reading skills are best with my immediate family – but it was enough for me to be able to fill in the words I didn’t catch with logical guesses. I probably understood more of what was said in this ceremony than I did at other functions when I still had my hearing!
I was wondering if the interpreter would have to fingerspell all 600+ kids’ names as they crossed the stage (yikes), but the names were listed in the program and I was able to lip read the presenters well enough to catch where they were in the list. (She did ask us, BTW, if we wanted her to sign the names and we said goodness no!!)
All in all, it was a really nice ceremony and I was amazed at how much a sign language interpreter (who wasn’t even intended for me specifically) helped me. I know they have oral interpreters for people who just read lips, but I never really understood how that would be helpful. Now I do! Since she also spoke (or moved her lips – I have no idea if she used her voice) I was able to read her lips while she signed, plus I recognized some of the signs she used so that helped too.
My daughter’s 8th grade graduation was held in the high school gymnasium. I had been through this once before with my son four years before, so I had more of an idea what to expect. I knew that seating was in the bleachers (ugh) and the kids sat in folding chairs in the middle of room (the bleachers were on either side). We got there early and again couldn’t figure out where to sit. There was a ‘reserved’ sign taped a small bleacher section in the front row, but it wasn’t large enough for all four us to fit (me, Dave, Eric and my mom). There were also folding chairs marked “reserved” and “reserved – staff” next to these bleachers. Dave finally walked up to someone and they just waved us off to the bleacher area. Originally it was just me, Dave and Eric because my mom arrived later. The three of us squeezed onto this little section of bleacher, literally with our arms smashed against our bodies in order to fit. On top of this, the section they reserved for us was broken and the top (where you sit) was angled down in the back instead of being level. You couldn’t sit fully on top of the bleacher without sliding backward into the legs of the person behind you. We ended up perching on the very edge (and seriously, my butt is still sore from it) for 2-1/2 hours. Eric mentioned how uncomfortable he was and I urged him to sit somewhere else – after all, he didn’t need to lip read and there was no reason he had to be forced to sit there. He ended up across from us in the top row of bleachers, where we could see him and easily meet up with him again after the ceremony. That way when my mom showed up, she had room to squeeze in next to us – otherwise she would’ve had to sit somewhere else.
I had a feeling the same interpreter would be at this ceremony because she’d mentioned to the deaf woman behind me at the high school graduation that she had another graduation to do on Wednesday. Sure enough, I saw her come into the gymnasium from the opposite direction of where we were sitting. There was no chair set up for her anywhere though, and I wasn’t sure where she was going to sit. I saw her talk to some people who looked like they were in charge, and she walked around a bit, and then she disappeared. I kept expecting her to come back but she never did – I guess they sent her home! I was so, so disappointed.
We were closer to the people speaking this time so I was able to see their mouths better than at the high school graduation. However, most of the speakers were kids who were nervous and talking really fast. One girl appeared to be crying through her whole speech – she kept wiping her eyes. I had no idea what any of them said. Finally I just gave up and people-watched for 2-1/2 hours. I clapped when I saw other people clapping. The one benefit to sitting up front was having a great view of Paige as she walked up to accept her diploma, so that made it all worth it!
Still though, we came away from that ceremony feeling like we hadn’t been treated very well at all. It’s weird because they didn’t do anything wrong – they seated us up front as we asked them to, and we didn’t specifically ask for the interpreter. I guess it was just their attitude and the fact that the darn bleachers were broken that made it feel like a subpar experience.
I know, now, to ask for an oral interpreter at events like this. I know a lot of people rely on their spouses to mouth the words being said, but Dave is hearing impaired and doesn’t lip read, so he has an even harder time than I do in these situations. He also really liked having the interpreter there, which I think came as a surprise to him. We had no idea how much it would benefit us even though we don’t sign.
Now we know!
My baby boy, my first-born, turned 18 this morning at 4:39 a.m. It sounds like such a cliché, but seriously, it feels like I was 18 just a couple of years ago. How on earth can my baby be 18?!
This little apple-cheeked baby:
grew up into this handsome, tall fellow:
When I think of Eric the first word that comes to mind is creative. That’s fitting, of course, for a kid who’s going to be pursuing a Visual Art degree in college. But it’s not just the typical creative things that he pursues (writing and drawing, although he does both and does them very well). He’s creative in his choice of words when he speaks, in his choice of dress, in his choice of interests. This is not a mainstream kid. In fact, this year was the first time since 7th grade that he actually started wearing jeans and t-shirts. Even so, 90% of the time he throws on a customized suit jacket over his t-shirt, to make the look his own.
As a toddler and all through grade school, he was absolutely obsessed with superheroes. His bedroom was decorated in a Superman theme when he was 2 years old and he still has the same colors going. We did eventually pack up all of his Batman, Iron Man and Spiderman toys but if you look carefully, you’ll see a shelf in his room still dedicated to action figures. He’s just changed to video game characters instead.
So over the years his interests have stayed fairly constant…he just upgraded them as he grew older. Superhero action figures gave way to video game action figures. Dressing up in superhero pajamas and Halloween costumes evolved into cosplay, where he designed, sewed and created elaborate outfits that perfectly mimicked outfits worn by the characters in video games and movies. Comic books and Choose Your Own Adventure books were slowly set aside as manga and graphic novels took their place.
His creative mind takes him in tangents – his interest in German techno music fueled his interest in the German language, and he went on to take 3 years of German in high school, excelling to the point where he won an award for his command of the language. Pokemon led to an interest in Japan, which segued into a passion for Japanese pop and rock (J-rock), manga, anime and the Japanese language, which he plans to study in college.
This is not a kid who was ever easy to raise. He’s been challenged by ADHD and his impulsivity has always been a cross for him to bear. I know it’s not been easy for him, being gifted and distracted at the same time. He was the kid that teachers would pull their hair out over, constantly saying that he wasn’t working up to his potential. He persevered though, and I’m proud of him. Even though he struggled to get homework done and do all the ‘busywork’ that junior high and high school required, he always learned and absorbed…his test scores (almost always As and Bs) proved that. He just didn’t learn the way the schools wanted him to.
Eric has always been his own person. He’s not a follow-the-crowd kind of guy, and he endured a lot of grief from other kids who either thought he dressed crazy (and yes, he did for quite a few years!) or talked weird (what are those big words you’re using?!) Happily, as he got older he found people that were willing to take the time to get to know him and realized what a great person he is.
Yeah, I’m prejudiced because I’m his mom. But for every moment that he drove me crazy, he gave another moment full of total joy. I’m glad that he’s 18 and still enjoys hanging out with his mom every now and then.
Happy birthday, Eric. You’ve turned into a really unique, wonderful young man!