Category Archives: Cochlear Implants
Safe and Sound
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!
Live and Learn
When I was in high school, I worked as a cashier at Venture for about a year and a half. Venture was a store similar to K-Mart, your basic discount department store in the Midwest. This was back in ’81-’82, and the stores didn’t have scanners – we had to key in three sets of numbers for every item (department, item class and price). On top of that, the cash registers had no numbers on them, just blank white keys, meant to encourage us not to stare at the register but to look at the item and quickly key in the numbers on the price tag. (That scared me almost as much as the phone!) If a customer presented a credit card (and that was rare back then; most people used cash or checks) then we had to drag out the knuckle-buster and a credit slip, write all the information down, and call the charge in if it was over $50 (my biggest nightmare).
I got really good at the cash register part, and I was quick and efficient, moving my line along at a brisk pace. I usually had no problem understanding people, between my speech reading skills and my hearing aid. Back then, I had a moderate-severe loss in my left ear, and a severe-profound loss in my right ear; I wore one hearing aid, in my right ear. The biggest issue I really had was with the phone, which had no amplifier.
If I had to call in a charge, I never knew if I would be able to understand the person on the other end. Many times I had no idea what they were saying, but I got used to the questions they would ask so I would throw that information out there and hope it was what they needed. At least half the time I couldn’t hear the confirmation number they gave back to me; I’d just write down a bunch of numbers on the slip that sounded close to the noises I was hearing on the phone.
As a side note, I always looked for jobs that involved little to no phone use (I still do that even today). When I chose a cashier job, it never occurred to me that there would be a phone involved. I figured I couldn’t ask for a special phone and never bothered to even mention my difficulties to my boss. Although I kind of enjoyed the cashier aspect of the job, I would probably never go back to another cashier job because of the phones (and now those walkie-talkie things that everyone seems to use – those are a million times worse than the phone for me). Kind of a bummer because I’m looking for something very part time, just to bring in some extra money now that the business is slow, and it is hard to find something that doesn’t involve a lot of phone use with the skills I have (mostly office work). Between my phone phobia and my difficulties on the phone, I have no interest in using the phone at work – it stresses me out way, way too much. I can get by with a captioned phone, but I still would not want a job that had me using the phone very frequently. It’s going to be a long job search!
Getting back to my job at Venture…one day a lady came in, and I can’t remember now if she was alone or with somebody else, but I think she was alone. She told me she was deaf. And that’s all she said: “I’m deaf.” It froze me completely. I was terrified! I didn’t know sign language, didn’t know anything about deaf people or how to communicate with them. For all I know, she might have been able to hear a little bit; in my mind, ‘deaf’ meant completely devoid of hearing, no sound getting through at all.
I just smiled and nodded, didn’t say anything, and rang her purchases up. The whole time, I was slightly panicked, wondering how I was going to tell her the total of her purchases. I had no idea if she could lip read, I had no idea how to communicate with her at all. I believe she moved around so she could see the total on the cash register, then she paid and that was that. But all these years later, I still remember how freaked out I was to have someone tell me they were deaf…even though I also had a hearing loss!
Now that I’m deaf myself (and hearing with CIs), that always stays in the back of my mind if I identify myself as deaf to somebody. I never, ever just say, “I’m deaf” and leave it at that. I follow up with, “I read lips and I have cochlear implants.” Depending on the situation, I might also let them know that I’ll say something if I’m having trouble hearing. Usually I just like to throw it out there if the situation warrants it, so they don’t think I’m either rude/ditzy/clueless/stupid if I don’t respond appropriately. I always say that I’m deaf, though, because I am and also because it seems to catch people’s attention more than “I have a hearing loss.” People tend to be more careful about looking at me when they know I’m reading their lips; if I just say that I have a hearing loss, most of the time they talk with their head turned and/or talk too quietly or too fast.
Hopefully I’ve never elicited the same amount of fear in somebody that I had that day I met my first deaf person. Part of it was my young age and inexperience; part of it was her lack of information. Although she didn’t have to tell me anything else, it would have helped to know how to communicate with her since it wasn’t something I had any experience in. Live and learn!
And the (Medical) Hits Just Keep on Coming!
Remember how I said Dave had the same abdominal pain that I did earlier this week? And I thought maybe we had something viral? Well, it turns out Dave’s pain was an entirely different animal!
He woke up feeling fine on Saturday morning and went over to my mom’s to continue painting – when I woke up, I just found a happy note from him (“Good morning, sunshine!”) letting me know where he was and that he’d be back by 10 am.
He came back and I could tell something was wrong, but I couldn’t tell if it was maybe some catastrophe that happened at my mom’s, or if he was having some side effects from the Hep C treatment or what. He told me that the pain had come back, and he thought it was some terrible gas attack. He stretched out on the floor and said that lying flat made it feel a lot better, so we assumed he was dealing with my Weird Stomach Troubles.
As the afternoon progressed, he said he was pretty sure it was something else – he could feel really bad pain when he urinated, and it was more in the back on his left side (my pain was more in front, like the pelvic area, and not the back). We checked the possible side effects from his Hep C treatment, but nothing was mentioned about pain like this…nausea and loss of appetite, yes, but not severe pain.
Of course we got online and started researching, and then kidney stones seemed like a real possibility. After he read some horror stories about guys having instruments inserted into their ‘delicate personal area’ to extract the stone, he decided he would ride it out at home until he passed it on his own. So he started guzzling water and riding out the pain, assuring me that he could handle it and there was no way that he needed to go to the ER. Since he’s as stubborn as me, I didn’t push him on it…I just told him to let me know if he changed his mind.
Around 7:30, we were watching TV and I could tell he wasn’t even paying attention to the show; he was closing his eyes and grimacing in pain. I asked again if he wanted to go to the ER; first he said that maybe he’d go in the morning, if it wasn’t better. About 10 minutes later, he finally decided he’d rather go NOW, thank you very much. So we headed out around 7:45, after making sure we had his Hep C information. I briefly thought about bringing his morning meds in case he was admitted, but I decided against it. I also confirmed I had backup CI batteries in my purse, since they usually run down in the late evening.
We got to the VA hospital (about a 30 minute drive since there wasn’t much traffic) and the waiting room was empty. Dave walked up to check in and the lady at the desk said, “Oh my, you look like you’re in a LOT of pain.” That was putting it mildly! By this time he was walking like an old man, hunched over and shuffling. The intake nurse called him back pretty quickly; I made sure to go with since he was having trouble hearing and really kind of out of it from the pain. His blood pressure was 150/90, which is by far the highest I’ve ever seen it – Dave always has perfect (enviable) blood pressure. I noticed that the nurse repeated everything back to him when he was finished, to confirm his symptoms, and I was impressed – I had never seen them do that before. I assumed it was because he was hard of hearing. I did notice that the VA seems to deal with hearing impairment better than other hospitals I’ve been in, possibly because they see it more with veterans than with the general population.
We went back out to wait for about five minutes before being called back to a room. Then we sat, and sat, and sat some more. A nurse came in and collected Dave’s urine sample and said the doctor would be in soon. I would say it was close to 9:30 or 9:45 before he came in. I was starting to get a little pissed; I mean, Dave was in so much pain and it felt like we were being ignored even though the ER seemed to be pretty empty.
Finally though, things started moving along and we ended up being really pleased with how the whole visit was handled. He was seen by the doctor, then the nurse came back to draw blood and right after that they took him for a CT scan. I expected that to take forever; I remember checking my watch and it was 10:08, so I figured he might be back around 11:30. He came wheeling back in at 10:22! Then we waited again, for a long time. After about 30 or 45 minutes, the nurse came back and gave Dave some morphine. FINALLY. At that point, he was so much better – it really took away his pain and made him more lucid.
We were chatting away and boom, my right CI battery died. I grabbed my purse, slipped on a replacement battery and…nothing. The battery was dead. So I put the other replacement battery on, and same thing – dead. I couldn’t believe it! It’s been a long time since I used the batteries in my purse and I never dreamed they would just go dead without using them, but I guess that’s what happened. So there I was with only one functional ‘ear’ at about 11:15. I checked my left CI and I saw two flashes when I slipped the battery on and off. Four flashes means the battery is fully charged, so this one was at least halfway gone, possibly more. I decided to just take it off and go au naturel, since I can understand Dave fine when I can’t hear. I wanted to save my hearing for when the doctor came to talk to us, and also in case I had to drive home alone (if Dave was admitted) so that I could hear the GPS.
This was another loooong period of waiting, while they waited for someone to read the CT scan. Since Dave was able to talk and no longer in horrible pain, we spent a lot of time chatting and practicing sign language. He was teaching me – I still need lots of practice! At one point they came in and took him for an X-ray; that went just as quickly as the CT scan. Finally, the doctor came back and confirmed that Dave had a 2mm kidney stone. They were giving him three medications (pain meds, antibiotic and Flomax to help his muscles relax) as well as a strainer so he can (hopefully) catch the stone. They told him to call Urology on Monday and tell them he needs an appointment. He is really, really hoping he will pass the stone on his own before the appointment!!
It was pretty funny – the doctor was talking to him about using the strainer when he urinated and Dave said, “Oh no, I don’t strain when I pee.” And I could see this look of amusement pass over the doctor’s face – he was standing on Dave’s deaf side (as was everyone that walked into the room, since they entered on his left, which is deaf) and he finally realized Dave was misunderstanding him. But I thought it was a pretty easy thing to misunderstand – we cracked up over that later on!
The doctor left and Dave went off to go the bathroom (his seventh time since we entered the ER). The original nurse had left for the evening, and the intake nurse had taken over for her. While Dave was gone, she came in the room, kind of excited, and asked if we knew sign language. I showed her the CI I was holding, told her I was deaf and my batteries were dying so I was preserving them, and put the CI on to talk to her. She pulled her hair back and said, “I have CIs too! Two of them!” It was so awesome! I realized that was probably the reason she repeated everything back to us during intake – to make sure she heard it correctly. She knew sign language well, and explained that she had seen us signing earlier. I told her that Dave was teaching me, since I just lost all of my hearing five years ago and didn’t know many signs. Then I told her that we actually met online through a hearing loss support group, the SayWhat Club. Her eyes lit up and she said she’d been looking for something like that; she had been a member of ALDA many years back. We were having a great time, talking about SHHH and ALDA, and I recommended SWC, HLAA and the Illinois Cochlear Implant Chapter to her. Dave came back and joined in the conversation; it was just a really nice surprise and an upbeat way to end the evening.
We went off to wait at the pharmacy for his medications, and finally headed back home a little after 1 am. We got home between 1 and 1:45, fed our outdoor kitty (Goldie) who was waiting impatiently on the deck for her midnight snack, and collapsed into bed a little after 2 am. We’re usually in bed by 11 pm so it was weird to be up that late and not even tired!
Dave is making pie crust while I type, and his pain meds are doing the job. Hopefully this medical crisis will resolve itself quickly for him and we can get back to focusing on one medical treatment at a time!
Living With Someone Who Has Hearing Loss
I’ve written about this before, but it’s on my mind again because tomorrow marks 15 years (15 years!!) since the day Dave and I met in person. Before I met him and started hanging out with him, I had really never been around someone with a hearing loss. I learned the hard way that personally having a hearing loss did not mean I was automatically aware of how to communicate with someone else who was hard of hearing. Kind of like how going deaf didn’t suddenly give me the power to understand and communicate in sign language.
I’m the only person in my immediate family with a hearing loss, so I grew up knowing they could help me out if I didn’t hear something. All of my friends, boyfriends and my first husband had normal hearing. I was 33 when I met Dave, so I’d had plenty of time to get used to having other people help me out when my own ears fell down on the job. That was the first big eye-opener for me.
I’d hear something and turn to Dave. “What was that?” He’d shrug and say, “Beats me!” I’d leave the water running in the sink, walk off and forget about because I didn’t hear it. He didn’t hear it either; who knows how much water we wasted before one of us noticed the silent stream gushing forth from the faucet.
We’d go out somewhere, and I would actually have the advantage because I was better at reading lips. The cashier would give me the total, and I wouldn’t really pay attention because I was used to the person I was with being able to hear and relay the amount to me. Dave would be silent – he had no idea either. I learned to be more vigilant, especially in noisy situations. I couldn’t hear well, but I could read lips and thus became the ‘hearing person’ in that situation. Talk about role reversal!
I was used to just talking, probably at a lower volume than normal since my own voice always sounds loud to me (whether I had hearing aids or CIs). I didn’t bother to make sure Dave could see my face, or that I was even in the same room. I’d get no response at all from him and I’d realize, “Huh. What an asshole I am – I’m not even attempting to be considerate!”
It probably took a month or so for me to get used to this, checking my annoyance if he didn’t hear me at first – it was my fault, for not doing what I knew needed to be done for him to understand me. It was so weird to realize I was really bad at being considerate and thoughtful when it came to communicating with the man I loved. It truly was not second nature at all.
When we first met, my hearing loss was a little more severe than Dave’s but in the opposite ear. So he wears a hearing aid in his right ear; I wore mine in my left ear (and the transmitter on my deaf right ear – they were wireless bi-CROS aids). Dave just wears the one hearing aid and is profoundly deaf in his left ear. So we got used to positioning ourselves so our good ears were next to each other. We have a double computer desk and Dave sits to my left; when we watch TV or movies, I sit on his right side. When we go for walks, I’m on his right side. If we’re both in the car, he always drives (that way his good ear is next to me). The only time I drive now is if I’m going somewhere alone – I’m getting a little spoiled, always being able to kick back in the passenger seat! 
I contribute to our road trips by operating and translating the GPS system for him – half the time he can’t understand what it’s saying, and the other half of the time he chooses to be ornery and ignore the directions while yelling at Maggie (our Magellan GPS…you’ve named yours too, right?!) and telling her she’s crazy.
I learned that even though our hearing losses were a little bit different in severity, being able to read lips gave me the advantage in noisy situations. I got used to being the one to help if he didn’t hear a question from the waitress or cashier or salesperson.
So over the years I learned the tricks to communicating with a hard of hearing person. Make sure they can see you when you talk, and make sure you’re talking clearly…not too loud or soft, no exaggerated lip movements, not too fast or too slow. Dave tends to leave his hearing aid out, especially in the morning, so I try to remember to look at his ear and see if he’s wearing it. If not, I talk louder and stand right in front of him.
If I’m behind him, I’ll gently touch his arm to get his attention. Sometimes this still scares the crap out of him, but I learned a gentle touch is better than a tap or grabbing his arm or something. If there’s a really loud noise (coffee grinder, loud music), I’ll wait until it’s over before I talk. Sometimes I can’t tell if he can hear me or not, so I ask. “Can you hear me? Am I speaking clearly enough?” We both sometimes still do the deaf nod thing with each other, but by now we can usually tell when the other is faking and I, personally, derive great joy from calling Dave out on it.
When I went deaf (almost five years ago now), Dave was so amazingly patient and thoughtful. He never expressed a single iota of frustration over having to repeat himself. He happily learned signs with me and was willing to try whatever I was interested in (we even watched a DVD on cued speech). He never told me, “It’s not important; never mind.” I think patience and kindness are so important – it goes such a long way when someone wants to communicate with you and you take the time to do what needs to be done to facilitate that. No eye rolling, no exasperated sighs, no sharp tone of voice – just kindness and patience. It’s easier said than done!
Now I’m in a weird position where sometimes I hear much better than Dave does, even though I’m technically deaf. I have a much better time understanding people with accents, using the powerful combination of my cochlear implants and speech reading. Many of Dave’s doctors have accents, and they share information we really need to know, especially with his Hepatitis C treatment coming up (it starts April 10th). Whenever he has an appointment with a specialist or for anything other than a routine checkup, I go with. I take notes. I make sure he doesn’t miss anything, and that we advocate for whatever he might need.
It’s been 15 amazing years, and he has taught me so much. It really all started the first time I realized this was going to be a different experience, dating a guy with hearing loss. He was adding milk to my coffee, and he told me to say ‘when’ because he didn’t know how much I wanted. He poured; I said, “When.” He kept pouring, and I thought, What the heck?! Why isn’t he stopping?! It finally dawned on me…he didn’t hear me! I yelled, “WHEN!” and he looked over, startled, just as the cup was about to overflow. And so it began…my hearing loss education.
Little Accomplishments
On Friday Dave and I went over to our local Habitat for Humanity ReStore, since everything in the store was 20% off. We scored a few great deals that saved us lots of money – 5 gallons of driveway sealer for $4, a brand new (in the box) toilet seat for $4, a bunch of stainless steel screening for $2.50 and some cove base to use in the downstairs in the entryway (a whole box of it for $2). As we were leaving, I noticed a flyer for a demonstration the next day on Annie Sloan’s Chalk Paint. I’ve heard a lot about it (kind of hard not to if you follow a lot of home décor blogs or Pinterest boards) but had never actually seen it, so I was curious.
So we went back yesterday, and at first we couldn’t find the demo. There was no signage, so we walked through the whole store. I couldn’t remember how long the demo was for, so I started to think maybe we missed it (we got there about an hour after it was supposed to start). Finally, after walking the perimeter of the entire store and ending up back at the front, we noticed a table set up at the far end. Bingo!
The women demonstrating the paint were really nice, and there were a few other people gathered around the table. I positioned myself so I could see their faces, and then started asking questions. Lots of questions. It was awesome – I was able to find out everything I wanted to know, got to see examples of various ways to use the paint and wax finishes, and the demonstrators seemed happy to have lots to talk about. We hung around for about 20 minutes, and then thanked them and moved on.
After we left the store and we were talking about the demo, Dave said, “Boy, you were talkative. Really talkative.” Then we kind of laughed, because usually I clam up in those situations. We’ve been to lots of conventions with vendor/exhibit halls, and usually I just walk by and look, or maybe stand in the back and watch. I never talk or engage the people in conversation. When we used to go to candle conventions, I even knew many of the vendors because we ordered from them; even then, I was very quiet. A big reason is because it’s so hard to hear in those situations; I really didn’t want to be in a position where someone was telling me all this stuff and I was doing the deaf nod, pretending to understand. (Back then I had my bi-CROS analog hearing aids, which had no program to suppress background noise…it was all just LOUD.) Part of it was worry that I’d be pressured to buy something, when I just wanted information. Part of it was just my natural shyness and discomfort with making small talk/casual conversation.
After we started going to HLAA conventions, once I had my CIs, I started to come out of my shell a little bit. I was still kind of shy, but I started to ask more questions, make eye contact (one thing I really avoided, since it invited conversation) and participate more in the product demonstrations.
Even though the ReStore was loud (lots of banging from things being moved around, as well as the general cavernous, echo chamber effect due to the building) I did okay as long as I could also lip read. I didn’t miss anything, and I just had a blast asking all the questions I had about the paint. I could see Dave periodically looking at me, kind of like, ‘Who is this woman and what has she done with Wendi?!’ I know this isn’t a big deal to most people, but for me it’s nice to shed some of that fear of starting a conversation with a stranger!
In non-hearing-loss-related triumphs, I actually picked up Maxie, our former-feral mom cat. If you’ve been reading my blog for a while, you’ll remember an entry I wrote where I worried about how we’d get Maxie and her two girls, Alice and Grace, into carriers when it comes time to move. Although they’ve been living indoors with us for almost seven years now, we still can’t really pick them up. In all other aspects, they’ve become regular domestic cats (although it took a few years) – we pet them, they come to us when we call them (and also just for attention), Maxie has progressed to sitting on my lap if I’m laying down or sitting on the couch; the girls (we still think of them as kittens even though they’re now seven) are more shy, but Alice has occasionally jumped up on the couch with me, and Grace will lay next to me in the morning if I’m still in bed and Dave has gotten up.
But picking them up, or manipulating them in order to trim their nails or get them into a carrier? Hell no. With Maxie, as soon as you run both hands along her sides, she slinks to the ground, out of reach, and runs away. The younger girls don’t even let us get that far! Well, a couple days ago Maxie was sitting on my desk chair and I wanted to sit down. With our fourth cat Sabrina, it’s no big deal – I just pick her up and deposit her somewhere else. (She’s the only one, besides Maxie, that ever sits in my chair.) Well, Maxie was pretty comfortable and I figured if I slid my hands along her sides, it would freak her out and make her jump off. I was shocked to see her stay in a sitting position, so I figured what the heck…let’s try this. I leaned over, slid my hands underneath her and lifted her to my chest (not a long distance, since I was leaned over her back). She started complaining, making this moaning kind of meow she does when she sees an outdoor cat on the deck. I kept talking to her and deposited her on the floor; the whole time she kept her ears erect and her tail perky so she didn’t have her usual physical signs of distress.
Dave watched all of this in shock, then immediately began to praise her. And that little stinker just strutted around, tail held aloft, as we petted and complimented her on her bravery. I haven’t tried it again but the next time the opportunity presents itself, I will…hopefully we can do this enough that she’ll finally realize we aren’t trying to hurt or trap her when we do it. Yay, Maxie!
Sometimes the World Sounds Like Charlie Brown’s Teacher
I have a confession to make: I don’t have speakers for my (desktop) computer. Well, I mean, I have them but I don’t have them hooked up. In the fall of 2012 we completely changed our computer desk situation, and we went from this:
Our ‘Command Center’ before — mostly shows the top of the desks, but trust me, it was huge! (Two massive desks next to each other.)
to this:
The two-person computer desk that Dave made
(And the ‘before’ picture doesn’t show the full glory of the hulking behemoths containing our two desktop computers, two printers, etc. etc. which extended completely through the dining room and halfway into the living room.)
When we made the change, Dave waved my computer speakers at me and asked if I wanted them hooked up and, if so, where did I want them? I looked at the nice clean desk and decided I didn’t need the speakers. I use sound so little with my computer, and if I do use it, I almost always wear headphones so I don’t bother everyone around me with what I’m listening to. Now I have no choice but to use headphones if I want to hear anything on the computer — no big deal.
Part of the reason I rarely watch videos (the main reason I’d need to hear sound) is because I’m still used to thinking I can’t. Back in the day, our (dial-up) internet connection wasn’t all that great and you just couldn’t properly watch a video – it was all stuttery and half the time wouldn’t fully load. Those days are long gone, but I am the embodiment of the expression ‘old habits die hard.’ Every time I click on a video and it looks fine, I get a little thrill. Look at me with my fancy computer!
The other reason is that I still need captions, and almost nothing is captioned online. The Youtube translation/captioning that they offer on most videos is horrendous – have you ever tried it? It’s laughably bad; sometimes not even one word is properly captioned. If you have a few minutes and want to see a great (hilarious) example of it, watch the video below. What they did was act out a short little script, and let Youtube do the automatic captions. Then they took the words that Youtube came up and re-acted the skit using those words. They do it a third time as well, and besides being hilarious, it’s a great example of how bad the captioning really is. The skits aren’t that long, and it’s worth a viewing.
I tried to embed the video, but it isn’t working, so right-click on this link and open it in a new window: http://youtu.be/23H8IdaS3tk
Sort of in this category is another funny Youtube channel – Bad Lipreading (http://www.youtube.com/user/BadLipReading).
Since I lipread, this really fascinates me and cracks me up. They have videos with and without captioning, and I can only understand the captioned ones. (Luckily the captioning is spot-on for these.)
Even though I can test amazingly in a sound booth with my CIs on, it just doesn’t translate to the real world for me. (Probably because the real world isn’t in a sound booth!) I’m sure it also has to do with the type of hearing loss I have and the fact that I have some of my high frequency electrodes turned off in my CI programs. For whatever reason, if I’m watching TV or a movie, or listening on the phone, I need to see faces or have captions to make sense of what I’m hearing. Otherwise it’s like Charlie Brown’s teacher: “Blah, blah blah blah.” I can hear it, but it’s just noise.
There was a truly hysterical scene in an episode of Louie, where Louis CK is calling in an order to a deli and he can’t understand the heavily-accented man who answers the phone. I tried to find a video of it and I can’t find the whole clip, unfortunately. This is just a trailer for the episode, and it cuts out one of the best lines in the exchange, but it still illustrates really well what it’s like for me to talk on the phone. (The video is short , but you have to put in your birth date since the show is rated MA. Which is weird, because the trailer has nothing Mature in it, but whatever – watch it, it’s funny! Be warned though, it’s not captioned…but I’ll explain it in a sec.) I can’t seem to embed this one either, so (again) right-click and open it in a new window:
So, he’s ordering orange juice and the guy says, “Pulp?” And the scene proceeds, as so:
“Pulp?” –Deli guy
“What?” -Louie
“Pulp.” –Deli guy
“Is there a – do you have a synonym?” –Louie
The guy then says something more, like, “The orange juice, do you want pulp in it or not?” and then Louie finally gets it. In the full scene, though, the ‘Pulp?’ exchange went on longer and at one point Louie mutters something like, “It’s just NOISE, I don’t…” and I was yelling at the TV, “Yes!! I know what you mean!” (By the way, he also orders 15 bananas and ends up getting 60…haha…another example of how easy it is to mis-hear things!)
So yea, that’s how it is for me and Dave. Give us captions on everything, please and thank you!
Creature Comforts
I think I’ve mentioned this before, but every time we watch a movie or TV show with an apocalyptic sort of setting (mainly where there’s no electricity), I always think, If I were in that situation, my CIs wouldn’t work and I’d be deaf. Of course, I’m deaf either way but you know what I mean – I wouldn’t be able to hear, ever. Unless the electricity came back and I could recharge my batteries, that is. Even Dave would be in a bad way – he could use his hearing aid only until his batteries ran out (and we could no longer find a store that carried them).
Or, in the case of the tsunami in Indonesia and other countries near the Indian Ocean (we watched The Impossible last week…what a great movie!), we definitely would be screwed because our hearing instruments would be ruined by being in that water (assuming we survived, of course). I actually told Dave, “Wow…if that was me I’d be deaf and practically blind, because my contact lenses would definitely get washed out of my eyes in that situation!” (I am very, very nearsighted – if I didn’t have contacts/glasses that could correct my vision, I would be legally blind.)
It’s just this weird little thing I do; I have no idea why. But the other day I got myself all worked up over something similar in The Walking Dead. In that show, most of society has been infected by a virus that turns them into zombies; the survivors are banding together (or fighting each other, in the recent storyline) and we see them doing things like going into abandoned stores and looking for food and supplies. So you figure it’s been a while, right? At least a year, maybe more? Well, I noticed that only one person on the show seems to wear glasses. And, come on, I imagine a lot of people in real life need glasses or contact lenses…is it really possible that every character on the show but one has 20/20 vision? What do they do if they wear bi-weekly contacts (like me) and need more? You can’t exactly order them or go to the doctor. What if a zombie chases them and they lose their glasses? What do they do – they can’t really replace them, after all. I know it’s silly and it’s TV and it’s a zombie show, don’t take it so seriously, omg, but it still drives me crazy.
That’s the kind of thing I’d get a kick out of watching — instead of all the fighting and warring factions and all of that, I’d like to see how people deal with the reality of living in a world where all the things we take for granted are suddenly wiped away. This doesn’t apply to The Walking Dead, by the way. I love the way they handle the show and keep a mix of personal stories and violence, actually. I’m thinking more of shows like Jericho (which was canceled a few years back). The scenario was that nuclear bombs went off across the US and the people in this small town in Kansas don’t know why they suddenly have lost power and are cut off from the rest of the world. I was hoping they would focus on the real-life “How do we deal with this?” scenarios, but instead they spent too much time focusing more on fighting. The first few shows were promising, though!
I guess it wouldn’t be very fun to watch people stumbling around on The Walking Dead because they don’t have glasses anymore. But Dave did get a good joke in, after I was done with my mini-rant. He pointed out that if, in fact, I was in a zombie apocalypse and no longer had contacts or glasses, I would also be shambling along with my hands out in front of me, just like the zombies. I would fit right in!
Paige as a zombie for Halloween…guess it runs in the family!
Situation *
Sometimes I think about the weirdest things. Earlier today I was thinking about all those boot camp scenes you see in movies, where they have a drill sergeant marching the guys along and yelling out that call and response thing. (Dave told me it’s called ‘cadence.’) You know what I mean, right? Well, if I was in that situation, I’d be screwed. The drill sergeant would yell out his thing, and when everyone repeated it I’d just be mumbling and hoping he didn’t notice that I wasn’t really repeating it. Because, of course, I wouldn’t know what the heck he was saying.
Oh, I hate call and response situations! We encounter them at concerts and presentations; we had them come up at both the kids’ college orientations. Sometimes I can figure out what I’m supposed to say, but usually I fake it.
This got me thinking about other situations that I, as a deaf person with CIs, and Dave, as a hard-of-hearing person, really hate. We talked about that today as we worked side by side, putting dinner together (chili, in the crockpot…can’t wait).
The first thing I thought of is people talking to me through a door. I don’t think Dave encounters this as much as I do; it’s probably more of a girl thing. People love to chat when you’re in a public bathroom. This always makes me freeze – if I’ve come in with someone else (you know that girls hit the restroom in packs whenever possible!) then I’m not sure if it’s them talking to me, or if it’s someone else in the bathroom talking to some other person. Not only can I not understand what’s being said, but everything sounds weird in a bathroom with all the tile everywhere and (usually) background noise like music or dryers going or toilets flushing, so voices are hard for me to recognize. If I know for a fact that I’m alone in the bathroom with the person I walked in with, then I feel like a big jerk not responding to them. It’s okay if it’s my mom or daughter, because I’ll just remind them that I can’t understand them. But I used to have this happen a lot with other female acquaintances that I didn’t know that well and who often didn’t even know I had a hearing loss. It was such an uncomfortable situation!
It also happens in dressing rooms. Helpful clerks will knock on the door and ask questions and that makes me nuts. To understand them, I have to open the door and have them repeat the question while I read their lips, and I’m usually in a state of undress. Just leave me alone, people! When I was in high school there was a popular store in the mall, Merry Go Round, that I finally learned I should never go into, because the sales girls always, always knocked on the door and chatted when I was in the dressing room. They’d ask how everything was, if I needed a different size, or they’d try to get you to come out so they could ooh and aah over how the clothes looked on you (and try to get that sale). It stressed me out so much that I stopped shopping there even though I liked the clothes.
I also hate when someone knocks on the door of either a public bathroom or a dressing room. At Goodwill, I’ve had dressing room attendants knock and then open the door on me because I didn’t respond. Talk about embarrassing! I couldn’t tell if they were knocking on my door or someone else’s, and it caught me so off-guard that I didn’t know how to respond. In the time it took me to stand there and think, Did they knock on my door? What do I say…hello? I’m in here? Uh…what should I do… I would hear the telltale sound of the key in the lock and see the knob turning. Usually I have enough time to cover up before they open the door and expose me to the whole damn store. The bathroom is the same way – I just freeze and don’t know what to say. Sometimes I say nothing, other times I just yell, “Occupied!” and hope that it was really my door the person was knocking on.
Let’s see, what else…oh. Talking into my ear. Please don’t do that! It doesn’t help me hear or understand you better…it just means I have to crane around and try to get your face in front of my face again. This goes hand-in-hand with whispering, which was the bane of my existence as a kid. Kids like to whisper! I felt like such a dork, having a kid whisper to me and then just looking at them cluelessly. I turned down a lot of sleepover invitations because of this (whispering combined with darkness…girls whispering after the lights are out…a nightmare for me) and also sleepaway camp for the same reason. I know my mom probably thought I was just clingy but this was a big part of why I never wanted to stay overnight anywhere.
Dave’s ‘crappy situation’ contributions were restaurants, cashier chit-chat, and events in big auditoriums or loud situations (especially the open houses and orientations we went to for the kids at school). All of these involve loud environments and unpredictable conversations. I can always tell when a cashier has stumped Dave with a comment or question he wasn’t anticipating. Sometimes I can jump in and save him if I’ve been paying attention and lipreading. I’ve mentioned before that we usually don’t go to restaurants, but if we do we try to get a booth along the wall, and Dave makes sure to face his good ear in the direction of the waitress. I do a little better now in these kinds of environments thanks to ClearVoice knocking out the background noise, but Dave still really suffers, poor guy.
Of course, we both hate drive-thrus, another thing I’ve mentioned before. It’s a good thing we don’t do a lot of take-out! You just never know what kind of goofy question they’re going to throw at you, if the speaker system is going to be clear or staticky, or if the person talking to you is going to have an accent you can’t understand. It’s not just food though; we also encounter uncomfortable drive-thru situations at the bank and the pharmacy as well. In those cases, we try to pull up to the window on the building, so we can (hopefully) see the person’s face and lipread if they have questions.
How about talking to someone in the dark? Nothing is more uncomfortable than sitting around a campfire or sitting outside at night and trying to talk to a group of people (especially those you don’t know very well). Again, this is something I dealt with more as a young person ; now we just avoid those kinds of situations if we can. Every now and then, though, we get invited to do something like this and we do go…we just don’t talk very much!
To end this on a more positive note (I’m starting to sound like a crabby curmudgeon here), I know I talked before about what it’s like for me at the end of the day, when I go to bed and everything is silent. In the morning, though, I go from total silence to instant sound, and it’s like the part in the Wizard of Oz when everything changes from black and white to color. I never know what my first sound of the day will be. Sometimes it’s just silence; I’m in the bedroom, usually alone, when I put my CIs on. Sometimes it’s really loud, because I have a tendency to put my CIs on right when Dave is grinding coffee beans in the kitchen. But today, the first sound I heard was loud, rumbly purring. Beanie was sitting at my feet, looking up at me. She went from silently (to me) staring to loudly purring in the space of a second. What an awesome way to start the day!
Miss Beanie, staring at you
* This song is by Yaz. LOVE!
Deaf Notes
Every night, I follow the same routine. After my contact lenses are out and my pajamas are on, I take both of my CI processors off. They consist of three parts: the rechargeable battery, the actual processor, and the T-Mic earhook (the part that hangs over and into my ear). I leave the processor and T-Mic attached but I slip off the battery from each processor and slide them into my battery charger. The CI processors go into my Dry & Store unit, which does a good job of removing any moisture that’s built up. I nestle my processors in with Dave’s hearing aid and ear mold, turn the unit on, take off my glasses and get into bed.
I don’t fall asleep right away – I usually read and mess around on my Nook tablet for at least an hour. Dave does the same with his tablet. We usually don’t talk – it’s just too much of a hassle. Besides being deaf, with my glasses off I’m so nearsighted that I need to basically be about an inch from something to see it. I read with my tablet pretty much touching my nose, and even with Dave lying right next to me, I can’t see him well enough to lipread him unless I have my glasses on.
I really do miss being able to just lie in bed and have a casual conversation with my husband. If we need to talk, I put my glasses on and he uses the tablet to highlight his face better (we just have our bedside lights on when we’re reading at night). Sometimes he has to lift his head up onto his hand so I can see his mouth better. There’s no tossing off a quick comment about something he’s reading – I can say something to him, though, since he can still hear me well enough with his hearing aid off.
So last night we’re reading, and I’m in my silent world, and I notice Dave get up and leave the room. He goes into the bathroom, comes out and turns on the hallway light…which is definitely unusual behavior. I just had to know what he was doing! When he came back, I put my glasses on and asked him what was going on. He answered, using the slower, more enunciated manner of speaking that he uses when I have my ‘ears’ off. (I asked him once if he also talks louder, and he laughed and admitted that he does. He knows I can’t hear him but it’s just habit. However, he is very, very good about slowing his speech down to a degree that I can usually lipread everything he says with no problem at all.)
I furrowed my eyebrows. “Airy…something?” He tried again. Again, it looked like he was saying ‘airy’ and then a word I really couldn’t figure out. I shook my head.
He grinned and made the sign for bird, then scrunched his face into an angry expression.
“Bird! Oh – Angry Bird!”
Dave laughed and nodded, and went on to tell me that he’d stepped on something coming out of the bathroom, which was why he turned on the hall light. One of the cats had dropped their Angry Bird toy right by the doorway, apparently.
“That is so weird…I really didn’t see the ‘ng’ part of ‘angry’…it totally looked like you were saying ‘airy’!”
Usually if we have trouble like this, Dave will completely rephrase his sentence or fingerspell for me. But every now and then we just do our own version of sign language like this, and it gets the message across.
We were watching Switched at Birth last night, which features many deaf people as well as hearing people that sign. I enjoy catching the signs that I recognize, which admittedly aren’t many. The hearing people always speak while they’re signing, and I noticed they usually sign what they’re saying, in the same order they say it…not every single word, which I believe would be Signed Exact English, but the words they sign are usually the same as the ones they’re speaking. I don’t know ASL but I know a little about it, and the signs aren’t always in the same order as they would be if you spoke the sentence. I asked Dave if he thought they were doing ASL or something else, and he guessed maybe Pidgin Signed English. That’s closest to what we do, when we sign.
It made me wonder if there are any classes that teach PSE. As I’ve mentioned before, there aren’t any ASL classes around here other than the super-expensive community college class. I think, though, if I were going to take sign language (and I really, really want to!) I would want to take PSE since that’s what Dave and I use, and he’s really the only person I sign with. We’ve rented videos and looked online at sites, which is fine, but it would be so cool to find an actual class we could attend together. I’m keeping my eyes open – who knows!
