On our way home from Dave’s one-month checkup with his hepatologist in Fort Wayne, we stopped at Subway for lunch. Although we like the food, Dave kind of hates going there because the ordering process confounds him. They ask a lot of questions, and for someone with hearing loss that’s a real drag.
I have an easier time with this kind of thing (as long as it’s in person) because I lipread, so I am usually the one to order. I just consult Dave first to make sure what he wants, or if he starts to order himself then I will relay the questions to him if he misses them.
Since it was just a light lunch, we did our usual and got the same sandwich in the foot-long size, and then split it. This location had a drive-through but we decided to go inside because I really struggle to understand anything through those speakers.
We were the only customers, and as we walked up to the counter the guy started talking. I wasn’t close enough to read his lips and had no clue what he said (he was talking really fast and also had a bit of a southern accent). I did my usual and just assumed what he probably said based on my past visits to Subway.
I told him the type of sandwich we wanted and the type of bread. He said something else that I missed, but I knew they usually asked about cheese and I thought I’d caught part of his question. “Did you say something about pepperjack cheese?” He nodded, and I confirmed that we wanted it. Then he asked if we wanted it toasted, which caught me off guard. I had to have him repeat the question a couple of times. After I answered him, I added, “I’m deaf and I’m reading your lips, so that’s why I sometimes miss what you say.”
Now, usually I add that I have cochlear implants and I hear with them; that way people know that I do hear sound but they also know that I’m reading their lips as well. But I figured eh, this is just a quick lunch order and why go into all that detail? Here’s what happened when I just let that statement hang in the air without further clarification:
The guy stopped talking.
He had been keeping up a constant patter while we were there, which was making it hard for me to tell if he was asking a question, making a comment about our order, or even perhaps just talking to himself. My statement silenced him, and what a gift it was!
He quietly made the sandwich and just kind of looked up when he got to the veggies, waving his hand vaguely in the direction of the options available. I smiled and said we just wanted tomato, nothing else, and no sauce.
Obviously he thought I couldn’t hear anything and there was no point in really talking to me anymore, so he resorted to his version of sign language – and it was perfectly fine with me (even preferable, if I’m being honest). I thought it was kind of hilarious; it’s been a long time since I’ve had someone react that way when I say I’m deaf. Even before I got my CIs and I really couldn’t hear, when I told someone I was deaf and reading lips, they would still keep talking to me the same way they had been.
(Before I get to my next story, I have to interject and say that Dave had his viral load tested at this appointment, and we got the results yesterday. As of one month into his three month treatment with Harvoni and Ribavirin, he has cleared the Hepatitis C virus! He never cleared it in 2013; he went from over 4 million to 11,000 but that was as low as it went. This time he started at over 3 million and BOOM … now it’s undetected. ! ! ! !)
The other hearing loss-related thing that happened around here was during a power outage. The power really doesn’t go out very often here, and when it does they get it back on within a few hours (at the most). It seems to go out at weird times, though, not during storms. The last time was about a week ago, after we’d had some rain come through. During the storms all was well, but about 3:15 in the morning my eyes just kind of flew open. I could feel that something wasn’t right; I just didn’t know what it was. I realized Dave wasn’t in bed, and then I looked over at the clock and saw that it was off – we had a power outage. (Dave had realized about five minutes before me and was getting candles.)
It wasn’t hot so we didn’t have fans on (or else the room suddenly getting hot would have woken me up). I realized that when I’m sleeping I’m more sensitive to light (and the lack of it) than I realized. I always assumed I wouldn’t wake up from a strobe light on a smoke detector, and that I’d need something that vibrated the bed to wake me up. (Those systems are, by the way, very expensive.) Now I’m kind of wondering if the strobe light would actually do the trick. I must be more sensitive to that kind of thing when I’m sleeping since I don’t have hearing to rely on. Very interesting!
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.
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!
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. 🙂