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The Joy of Conversation

I just realized I left out an anecdote when I finished up Hazel’s repair story. (I was in the midst of the aforementioned cold at the time, and I was kind of powering through the story rather than the usual meandering way that I write. I don’t know if that’s a good thing or a bad thing.)

So anyway, I had mentioned that because we couldn’t get Hazel started, and we don’t have a second car, we had to have the car rental people pick us up at the house and give us a ride to the actual rental facility. We’d never done this before and weren’t sure how it worked. I thought maybe they would arrive with the actual car we were renting. We were debating the logistics of this when a car pulled up in front of our house and we heard the horn honk.

Dave reached the car first and got into the back seat. I was about to slide in next to him when the girl who was driving, we’ll call her Tina, told me that I was welcome to sit in the front seat. Back in the days before my cochlear implants, this would have made me extremely nervous. Sitting in the front seat means you are obligated to make conversation, whereas the person in the back seat can kind of sit back and zone out without looking rude.

Well, I didn’t want this nice girl to think I thought she had cooties or something, so I didn’t hesitate to sit in the front seat.

She was very friendly and talkative; this would not be a trip made in awkward silence. The first thing she told us was that this was not the car we’d be renting, and I laughed and admitted we’d just been wondering about that when she pulled up. Then I started telling her about our saga with Hazel, explaining why we needed a ride to the rental place (and thanking her profusely as well).

It was about a 25 minute ride to the facility because we’d had some snow and the roads weren’t completely plowed. I chatted easily with this girl for the entire ride, something that would have been agonizingly difficult for me when I just had hearing aids. I didn’t hesitate to ask her questions and make comments when she told us stories about her family. In the past I would have kept quiet in an effort to keep conversation to a minimum (less worry about not hearing something properly that way).

At one point she asked Dave something that he didn’t catch (sitting in the back seat makes it especially hard because you can’t lip read). So I turned around and repeated it for him, making sure he could see and hear me. Then he explained to Tina that we both had hearing loss – that I was totally deaf and heard with cochlear implants, and he was partially deaf and had a hearing aid for the ear that could still hear. She’d never heard of CIs so we explained how they worked, and basically we blew her mind. It was fun to see her expression change as we spoke, to see her amazement at the technology that makes it possible for me to hear.

When it was time for us to return the car a week later, Tina was working at the counter. We handed over the keys and gave her an update on our car. Then I asked her if she knew the location of the Michael’s store – we knew there was one nearby, we just weren’t exactly sure where it was. (We wanted to stop in and look at their Christmas trees.) She laughed and said, “Wow, God works in mysterious ways!” I gave her a quizzical look, and she went on to explain that she was just going through a bunch of Michael’s coupons that she was going to throw away because they expired in one day. Then she handed us two coupons for 50% off, and explained exactly where the store was (not far from where we already were). How crazy is that?!

I mention that because before my CIs, I would never have asked that question. I would look the information up on my cell phone or something, but I would never take a chance and ask another person where something was because I could never be sure I’d hear or understand the answer. Having the confidence to ask that question opened up a whole conversation about a craft Tina was working on, and also the aforementioned coupons she was nice enough to offer.

I’ve mentioned before that I have trouble with the phone, TV and movies unless I have captions. But there is a night and day difference in the most important thing to me, face to face conversations with people. As long as the person doesn’t have a heavy accent, I almost never miss a word.

As we walked back to Hazel that day, I remarked to Dave that I felt like I could talk to anyone now that I could hear so well. Of course, Tina was especially easy to talk to because she was so friendly and outgoing. But I had no problem keeping a constant flow of conversation going, and I never once worried about what I would say next or if I would be able to understand what she was saying.

It was such a good feeling, and so fun to connect with another person in a way that I never would have before my CIs.

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Hearing Things

I was in the kitchen yesterday, making soup from the last of the Thanksgiving turkey, while Dave was in the living room, talking to Comcast. We had just bought a new modem earlier in the day and he was in the process of getting it set up. Since our captioned phone is voIP and needs the internet to work, he has to (reluctantly) make this call on his cell phone.

I could hear talking back and forth so I assumed he had the phone on speaker mode. It sounded like the conversation was going well; he was answering questions promptly and without hesitation. Then I heard him hesitate before explaining that he was hard of hearing, and could she speak a little slower? Uh oh.

“I … can you hang on for a second?” Dave race-walked into the kitchen, holding out his phone. “Can you understand this?” he hissed.

“Can you repeat that?” he asked the Comcast rep.

“Bleh, bah de hop der.”

I widened my eyes and shrugged my shoulders. I could hear a voice, but I couldn’t even tell if she was speaking English or not. I couldn’t make out even one word for him.

“Uh, can you say that again?” he asked. Again, gibberish flowed from his phone speaker. “I’m sorry!” I mouthed. I felt terrible, but I just had no idea. I could also feel his sense of panic; this was the only way to get the modem working, by calling Comcast to give the MAC address so they could work their magic. There was no other way to communicate with them to accomplish this; he couldn’t send them an email. His phone isn’t a smartphone so it has no caption apps (not that we know how to work those).

I dried my hands and walked into the living room to see if I could catch any of the conversation. It never got better for me, although Dave started answering questions again. (I think he got her to rephrase the question or statement he couldn’t understand.) After many frustrating minutes, he told her he was going to try something and he’d call her back. Somehow he got the modem working on his own.

The phone is always hit or miss for me; I can usually manage a short conversation if the person doesn’t have an accent, talks slowly and clearly, and I already know what the subject is going to be. That way, the captions can keep up and I get to hang up before I get too fatigued from trying to listen. Not everyone with a CI has trouble with the phone; some use it with no problem at all. But the phone is a major source of stress for me, and that makes it even harder for me to understand. It doesn’t really impact my life too much; in this day and age, I can get by with rarely using a phone and relying instead on texting and email. It is disappointing for me, though. I had hoped I would be able to hear perfectly on the phone after I got CIs. Instead, my phone skills went way down; without any natural hearing, I tend to hear noises but not make sense of what I’m hearing unless I have (accurate) captions.

Not all captions are accurate, by the way. When Dave talks to my mom, I always read the captions. Most of the time they make no sense. Here’s an excerpt from their conversation last night, transcribed exactly as it showed up on our captioned phone:

“… and she June as an cause human fed back so what is going on …,” and, “… and A the driver have been said in active something I can team the claim back to guess … .”

So yeah, the captions don’t always help. I was thinking about all of this when we started watching The Good Wife last night (no major spoilers for those who haven’t watched it yet, but if you don’t want to know ANYTHING about the episode then be warned). There was a trial, and they kept showing one specific juror. He was watching everyone intently, occasionally turning to whisper to the jurors seated next to him (and once getting reprimanded by the judge). Later in the episode, we hear him ask the man next to him what had been said. Just when we’re starting to wonder what’s up with this juror, the judge asks to see him and the two lawyers in his chambers.

Apparently one of the other jurors has informed the judge that he thinks this juror is partially deaf, because he’s having trouble following what’s being said. The juror asserts that no, he is not deaf. The judge persists, asking if there’s any reason he might not be able to understand the proceedings. Then the juror admits that sometimes, when he’s stressed, he suffers from Auditory Processing Disorder. (This is something I’m pretty sure I have, because it’s much worse when I’m stressed.) He assures the judge that he has coping mechanisms and isn’t missing anything being said.

The judge turns around, so the juror can’t read his lips, and asks a question. He doesn’t speak gibberish, but the audio and captions that we have on our TV reflect what the juror hears, not the actual question. He hears, “What waxing the number of the last wideness?” Then we get to see his coping mechanisms in action. The judge turns around, one of the lawyers protests that it’s not a common name, and the judge brushes off her complaint. He looks at the juror and asks what the question was. You can see a moment of panic on the juror’s face, then he takes a stab at it. “You asked me the name of the last witness,” he says. The defense lawyer looks triumphant, but the judge is no fool; he knows that her protest gave the juror a clue as to what the question was.

“Yes,” he says, “but the question is whether Cary Agos …” and he turns around again. Again we hear and see what the juror hears. “… hurt lemons bussing the important tree-mills of honeycuts.”

The room is silent while everyone looks to the juror for his answer. Finally he shrugs, and next we see him leaving the courthouse.

And that, folks, is how I hear many things if I don’t have visual cues to work from. Luckily I do really well if I’m in the room with someone, even if I can’t see their face. I can catch about 90% or more of what’s being said. It’s when sound is transmitted – through the phone, the TV, or at the movies – that I have the hardest time.

It was so gratifying to see a TV show get it right for once. We’ve seen ridiculous cochlear implant surgeries. (On House, when the patient came out of surgery able to hear already, and then proceeds to rip the implant out of his head with his bare hands … no. Just, no.) We’ve seen people (on Switched at Birth, of all places) call CI surgery ‘brain surgery.’ (Again … no.) But this was totally believable, and absolutely accurate.

Good job, The Good Wife!

Hearing With My Eyes

Dave and I headed back to the VA hospital on Monday for his dermatology appointment.  During his Hepatitis C treatment, a spot on his back started to change and the doctor wanted him to have it looked at.  It was always a little gnarly-looking, but during treatment it would randomly bleed and it developed more of a cauliflower shape.  (He’s had this mole-like thing for, he figures, around 20 years or more.)

I was a little worried, I admit; being the worrier that I am, I had frequently Googled ‘skin cancer’ and I was pretty sure that’s what he had.  The doctor came in and we talked for a bit; our conversation was going so smoothly that neither of us bothered to fill her in on our respective hearing losses.  We usually don’t mention it unless we’re having trouble hearing/understanding somebody; at the hospital, that would usually be a doctor or nurse with a heavy accent or tendency to talk to us while they’re looking away (writing or typing or whatever).

The dermatologist took a look at Dave’s back and casually said, “Oh yeah, that’s a basal cell carcinoma.”  Before I could freak out, she went on to say that it’s really common, easily treated and usually isn’t the type to spread.  She proceeded to look over the rest of his body and found one more spot that she said was a very early stage of basal cell carcinoma, on the top of his head.

As this was all happening, I was following what she said very easily.  She didn’t have an accent and she spoke clearly.  I really felt like I didn’t have a hearing loss at all; it’s very easy to get lulled into thinking you’ve reached a point where you don’t need accommodations anymore.

She explained that she was going to take a biopsy of the thing on Dave’s back, and we’d get the results in about a week; depending on how invasive it was, he’d either have it scraped off or cut out.  Then she turned away and slipped a blue mask over her mouth.  After that, it was like 70% of the conversation dropped away for me.  I could keep up by catching a word here and there and guessing at the content of the rest of her sentence, but it was so much work.

At one point, she turned away completely and asked a question.  I could tell it was a question by the inflection in her voice, but I hadn’t understood even one word of what she said.  Dave gazed at me over her shoulder, raising his eyebrows in a “What do I say?!” kind of way.  He hadn’t caught the question fully himself.  I had to shrug and mouth, “I don’t know!”  Finally he started telling her about our canning adventures; he had guessed that she’d asked what our plans were for the day and apparently he guessed correctly, because she continued the conversation with no ‘What the heck?!’ expression on her face (what we usually see when we respond inappropriately to an unheard question).

I could follow her a little better when I knew what the subject of the conversation was, but I was still having to work very hard to keep up.  If she had asked me a question directly, I would have definitely told her I was deaf and hearing with cochlear implants, and needed to see her lips.  But she slipped the mask off fairly quickly and, once again, our conversation became 100% clear to me.  She went on to zap Dave’s head with liquid nitrogen (he was not pleased!) and gave us instructions on taking care of the area where she took the biopsy.

The whole experience really made it clear how much I still use visual clues to ‘hear.’  I can go for so long with no problems because I spend most of my time with Dave, and I can carry on a conversation with him from another room – I’m so used to his voice, I don’t need to see his face to understand.  My cochlear implants work so well in most situations that I can get lulled into feeling like my hearing is 100% normal with them.  Then I have a situation like the one at the dermatologist’s office, and I get served a little slice of humble pie.

It’s all good – no complaints here; believe me, I will never complain about my cochlear implants!  I just need to remember that my eyes are just as important as my ears in my whole hearing experience.

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).VentureSign

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!

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.  🙂

Say what?

Conversation between me and Eric this morning:

Me: What kind of cake do you want? (Side note: His 18th birthday is this coming Tuesday)

Eric: The cake is a lie.

Me: The cake is alive?

Eric: No…Portal.

Me: Poodle?

Eric: (cracking up) GAWD, mom, what are you, DEAF?

(both of us laughing)

Eric: PORTAL

Me: Portal! (wondering what this has to do with birthday cake)

Eric: Yes! The cake is a lie!

He then goes on to explain that it’s a video game and apparently they offer you cake and then instead of giving it to you, they kill you. Or set you on fire.

It took a while, but I finally found out he wants chocolate cake for his birthday. 🙂

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