Not much has been happening here, other than being slammed with a wave of heat and humidity, and praying for no power outages whenever a storm rolls through. Having the car in the shop for three days kept us homebound (not that I wanted to be out and about in the heat anyway). Our biggest entertainment was waiting for the phone to ring, so we could find out the damage on the car repairs. (More than I wanted to pay, but less than it could’ve been, so…yay?)
I did notice, when I was looking at the calendar earlier this week, that my five year cochlear implant surgery anniversary is coming up (next week on July 22). It doesn’t seem like it’s been that long…and then other times it kind of feels like I’ve had CIs forever. What really illustrates the passage of time, though, is new technology.
When I got activated in August of 2008, I got the newest Advanced Bionics processor on the market at the time, the Harmony. There were people still upgrading from earlier models at that point, and it was kind of exciting to have this cutting edge tech sitting on my ears. Since then, there have been some new software strategies released (and I did get ClearVoice last year, which I love) as well as the Neptune, which is their waterproof, off-the-ear processor.
From time to time I mentor people who are considering getting an AB cochlear implant; since I got both ears done at once, I often correspond with people who are considering that option. But now I’ve noticed that I’m not as useful when it comes to the hardware. I can definitely talk about what it was like to have both ears operated on and activated, but I have no idea what it’s like to wear a Neptune, or what all the accessories are.
On top of that, Advanced Bionics has a new behind-the-ear processor coming out soon, called the Naida CI Q70. Anyone that’s activated at this point will get that instead of the Harmony (I believe they get a voucher that they can trade in for the new BTE when it’s officially available). Which is awesome, of course – but that makes me kind of obsolete. Already!
I’m hoping to upgrade to the Naida Q70, depending on the cost and my insurance coverage, next year sometime. Still, though, it’s strange to think that my newfangled bionic ears are being passed by already. Of course, they are still amazing and work just fine – it’s just not as easy to upgrade bionic ears to the latest and greatest as it is to upgrade your phone or your computer.
I’m only five years into this…kind of makes me wonder what lies ahead in the next ten or fifteen years, you know? Hopefully technology will just keep advancing by leaps and bounds. What I’m really waiting for isn’t even for me, but for my friends with degenerative vision diseases and conditions…I really want to see them get implants to help with vision the way cochlear implants help with hearing.
In other news, Dave got his very first cell phone…is he possibly the last person around to get a cell phone? He’s resisted with all his might, and then something just snapped and now he’s a little obsessed. It’s kind of fun to see him playing with his new toy, even if he won’t give his phone number out to anybody. (He’s got a pay-as-you-go plan and doesn’t want to use his minutes for anything!)
A few days ago I was getting ready for bed. Dave had just lain down and I was in the process of taking off my cochlear implant processors, removing the batteries and putting them on the battery charger before I put the processors in our Dry & Store unit. I was turned away from him but out of the corner of my eye, I saw him jump up from the bed. He let out a few choice curse words. Then I heard the buzzing from the bed shaker attached to the AlertMaster.
“What the heck? Did someone ring our doorbell?” I left one of my CIs on and went to look out the window. Dave had already gone to the door to check. There was nobody there and nobody that we could see in the vicinity of our house.
“Maybe it was kids screwing around, since we put that sign by the doorbell?” It was just after 10:30 pm and the sign instructed people to use the AlertMaster doorbell after 10:30…maybe we had some pranksters in our neighborhood. I went back to the room and checked the base unit; there was no red light flashing in the area marked ‘Doorbell’ so I felt pretty confident that nobody had actually rung the bell.
I finished with my CIs, got into bed and Dave joined me a few seconds later. Then I felt it again. Pulse Pulse … BZZZZZZZZZ. What the hell?! We checked the base unit and, again, no lights were flashing. Dave turned off the alarm and things stayed quiet after that.
The next night, the same thing happened when Dave got into bed. I was already in bed and ‘offline’ so I was reading his lips as he explained that he thought something was being triggered by him sitting/lying on the mattress near where the bed shaker was situated. He moved some things around and thankfully we haven’t had any more unexpected ‘alarms.’
Then yesterday morning, my alarm went off. This is the Sonic Alert alarm clock that we regularly use when we need to be up early. The thing is, we didn’t need to be awake early yesterday. I never set the alarm.
I was sleeping HARD when the alarm went off, so I was really discombobulated. I looked around in confusion for a few minutes, then grabbed the alarm clock and slid it to the ‘Off’ notch. It was 6 am and Dave was already up, so I walked, deaf and sleepy, into the living room where he was on his computer.
“Hey hon, do we need to be up early today – did I forget something?”
Dave jumped out of his chair; I had scared the crap out of him. (He told me later that at first he thought he was hearing the wind outside; maybe I wasn’t talking as loud as I thought I was?!)
Now we were both confused: Dave because I was wandering around half-awake at 6 am, an hour which usually finds me sound asleep; me because an alarm that had clearly been intentionally set for 6 am had gone off and I couldn’t figure out why.
After we consulted and agreed that there was no good reason for me to be awake (Dave was awake to take his 6 am medicine) I went back to bed. When I woke up and could think a bit more clearly, I was even more confused. This is an alarm clock with an indicator on the side that you slide up to either Buzz, Vib (short for Vibrate) or Vib/Buzz. Buzz means there’s an audible alarm, and that’s a very delicate way of saying it. It’s more like “Piercing Banshee Wail” than “Buzz.” So you can choose to have the audible alarm only, vibrate/bed shaking only, or both. (I don’t bother with the Banshee Wail; it doesn’t wake me up, but it would definitely wake up the rest of the neighborhood!)
So it’s not possible that this alarm was set by, say, a cat paw brushing against it. You have to grasp the thingy and slide it up to the specific setting you want. And Dave has no clue how to work this alarm clock, so I know he didn’t set it. Obviously I was the one who did it, but why? And when? I have absolutely no memory of turning the alarm on before bed. Did I do it in my sleep? Was I on autopilot and just set the alarm before bed without evening thinking about it? (WHY?? I almost never use the alarm unless I have to be up extremely early.)
All was well this morning, but I have to admit I’m a little jumpy after so many days of random alarms going off. I’ll sign this,
“Sleepless in Chicago”
We’ve been watching the news out of Oklahoma with heavy hearts – the images of the destruction caused by the tornado are almost impossible to comprehend. I can’t help imagining how scared the kids in those elementary schools must have been, and how absolutely terrified their parents must have been as they waited to find out if they were okay. My heart goes out to everyone who lost property, suffered injuries or worse, who had to endure the storm not knowing whether they would survive.
Here in Illinois, we get some wild weather at times but mostly in the form of thunderstorms. We’ve never had a tornado in our town; we had that derecho last summer which was scary and knocked out the power for three days, and I remember one instance when Eric was a baby (in the summer of 1990) when there was a bad tornado not that far from here.
We have a lower level with a full bath, so I imagine that’s where we’d go if a storm was in our path. I worry about the cats, of course, because only one of them is tame enough to catch and put in a carrier; the other three we would have to try to herd down into the lower level with us and then pray for their safety. But if a tornado blew through our neighborhood in the middle of the night, let’s be serious: we would stay asleep until it lifted us out of our beds. Well, Dave might hear it, hopefully in time for us to move to safety. But we would never hear our town’s tornado siren; we are lucky to hear it when we’re awake and have our hearing instruments on!
I’ve been working toward making things a little more safe for us at night, when I have my cochlear implant processors off (and I’m completely deaf) and Dave has his hearing aid off (and he’s got a severe to profound hearing loss). Previously, the only alerting device we had in our bedroom was my Sonic Alert alarm clock. It has a vibrating disc connected to it, which you slip between your mattress and box spring (or under your pillow, if you really want to scare the bejesus out of yourself in the morning). It will vibrate the bed when the alarm goes off, and it will also alert you to the phone if you have the phone connected as well. We don’t have a phone in the bedroom (and our phone service is through our cable) so we can’t use it for that. At least we have a way to wake up on time!
I knew we could do better, though. There are all kinds of systems out there for the deaf and hard of hearing which will alert you to all manner of things: doorbell, baby crying, smoke detector, etc. We have a smoke detector (one of three) right outside our bedroom door, but would it wake us up at night if there was a fire? Hell no! Well…again, it might wake Dave up since he has some hearing left. But it definitely wouldn’t wake me up. Some fire departments give out smoke detectors with a strobe light for the deaf/hard of hearing. After exhaustive research, I couldn’t find one in our area and once I realized that the only alerting mechanism was a strobe light, I knew it wouldn’t help me anyway. It might help if I happened to be awake and looking in the general area of the smoke detector when it went off, but otherwise it would never wake me up.
I started looking into these all-in-one systems and just about fell over from sticker shock. They range in price from about $190 up to many hundreds of dollars. I guess they assume that everyone with a hearing loss also has a lot of money! Yes, we want to be safe but we also have to be able to afford the equipment.
There’s a place in our state (Illinois Assistive Technology Program) that will loan, for free, all kinds of equipment to people with various disabilities, hearing loss included. However, the loan is only for five weeks and then you have to return it. It’s a “try before you buy” kind of thing. It’s awesome if you have a short term need, or are really planning to spend big bucks on something and want to be sure it will be helpful before you spend the money. But it’s obviously not a long-term solution.
I decided to fall back on my main avenue for items I can’t afford at full price: eBay. I searched for three different popular, recommended alerting systems to see if any were available at an affordable price. I lucked out in my search for the AlertMaster AM6000 unit. It’s normally sold for $180 and I was able to get it for $19.95 on eBay. It comes with a wireless doorbell and a bed shaker along with the base unit. It also functions as an alarm clock.
You can have the system alert you to things like a baby crying, a smoke alarm (or other audible alarm that continues for at least 12 seconds), even a motion detector. The problem is, all of these things are separate transmitters that cost about $50 each. You could easily spend more than $400 on the base unit, all of the transmitters and a pager that you can wear in order to be notified all around your home.
Our main concerns were the smoke detector and the doorbell. I figured the doorbell alert came with the base unit, so all I’d have to do is save for the audio alarm transmitter (for the smoke detector). After we took a look at the unit, though, I realized I had been imagining that it would somehow alert us to the doorbell we already have. We can hear the doorbell just fine during the day, but if someone rings the bell at night (and it has happened before) then we have no idea. This unit, though, gives you a whole new wireless doorbell that transmits to the base unit. When someone rings that doorbell, it will shake your bed and/or turn a bedside light on and off. That doesn’t help us during the day – if we replaced our current doorbell with the new one, we’d never hear our doorbell ringing! Unless we happened to be lying in bed in the middle of the day, we’d never know there was someone at the door.
We puzzled over this for a while, and then I got the bright idea to have the audio alarm situated between our doorbell chime (in the hallway, by the smoke detector) and the smoke detector. I figured it would alert us to both the sound of our regular doorbell and the sound of the smoke detector.
We set the base unit aside while I went back to eBay, searching for an audio alarm transmitter for a decent price. Just by luck, I found someone selling a “Doorbell Notifier” that had the same item number as the audio alarm I needed. I had a suspicion they didn’t really know what they were selling. But it was only $9.95 with no bids, so I put in a bid and crossed my fingers. A few days later, I won the auction and the audio alarm arrived quickly in the mail. I opened it up and yep…it was the exact transmitter we needed!
We started testing it out and it would just NOT notify us when the doorbell rang. We could see lights flashing on the transmitter so we assumed it wasn’t defective, but we were really puzzled. Finally we decided to try it with the smoke detector and see if it detected that sound. Sure enough, our bed started shaking and the light on the base unit flashed. I took another look at the manual and noticed it said it would alert for any sound that lasted consistently for 12 seconds or more. It doesn’t sound like much, but 12 seconds is actually a long time for a doorbell – ours rings just for a couple of seconds. There was no way it would ring long enough to set off this transmitter.
Dave finally suggested that we put the new doorbell out near the original doorbell, with a sign. I didn’t want to say something like, “Deaf occupants – please use this doorbell at night” because that would be like saying, “Deaf occupants who can’t hear you, so go ahead and rob us blind while we sleep!” Instead I just made a small sign: “Please use this doorbell after 10:30 p.m.” If I saw something like that, I would assume there was a baby or small child inside and it was a quieter doorbell (or something along those lines). In any case, the chances of this doorbell being used are pretty slim, but at least we have it out there so the police won’t break down our door if they come calling again at 2 a.m. (Long story – a misunderstanding regarding my daughter Paige, but it was definitely not an experience we want to repeat since they were NOT happy that it took us so long to answer the door. Our now-deceased dog was the one who finally alerted us.)
I was thinking we did a pretty good job of securing our overnight safety at a reasonable price, but now I’m wondering if we should look into a storm warning system. On the one hand, we get lots of weather alerts in the middle of the night for thunderstorms and I definitely wouldn’t want to be woken up for those. On the other hand, if we have a tornado in the area, I would prefer to know before it bears down on us while we sleep. Looks like I have a bit more research to do!
I started working the spring/summer after I turned 16, in 1981. My job search pretty much consisted of scanning the want ads in the paper, a process of elimination more than anything – what could I do where my hearing loss wouldn’t cause a problem? Right away I tossed out any kind of job with heavy phone work – answering phones at a pizza place, being a receptionist, telemarketing. Besides needing an amplifier to hear on the phone (and amplified phones were not that common in 1981), I have a phone phobia…something that I know isn’t limited to people with hearing loss, since I know of many people with fine hearing that hate the phone as much as I do. I also skipped any kind of waitressing job, because I didn’t think I could hear well enough to take accurate orders in a loud restaurant.
My first job was working at Baskin-Robbins, and I found it not through the paper but through one of my brother’s friends who worked there. He knew they were hiring and gave me the number to call. My friend called for me; she had a wonderful, relaxed manner on the phone and used to do this for me quite a lot, bless her heart. Thanks to her I got the job. (My phone phobia extends even to ads that require a phone inquiry; although I will swallow my fear and do it on occasion, I much prefer walking in to drop off an application or applying online.)
Since 1981, I’ve also worked as a cashier, keypunch operator, floating help in the office of a local school district (data entry, filing, Xeroxing, that kind of thing), file clerk, word processing operator (on a Wang word processor…before computers came along), and administrative assistant to a Human Resources manager.
I got the cashier job because my boyfriend’s mom was the supervisor in charge of cashiers; she just hired me without even really bothering to interview me. I stayed there for about a year and a half (half a year while I was also working at the school district).
I spent two years doing the keypunch/floating office help thing at the school district; I got that job because my Office Machines teacher recommended me when they called her looking for a student that did well on the keypunch machine. They actually called me and offered me the job; I didn’t even know it existed!
I worked for 10 years doing the file clerk/word processing job at McMaster-Carr Supply. I found out about that company through one of the secretaries at the school district, when my job there was coming to an end. Her daughter worked at McM and she kept telling me I should apply. I applied and kept calling about my application until I finally got an interview, after a couple months of persistence.
I left McM after Paige was born, and was a stay at home mom for a couple of years. Then my (now ex) husband and I separated and I needed to find full-time work. I found the admin assistant job in the paper; that’s when I applied to be a document clerk (no phone!) and the HR manager convinced me to be her assistant instead. I stayed for five years until they eliminated my position and laid me off in 2001. That job also solidified my determination to never get a phone-heavy job again; all the phone work traumatized me and left me stressed out and sick all the time.
So basically, I tend to stay on for a long time at my jobs (mostly because I hate job hunting) and I tend to find out about them in weird ways, although I always looked through the paper when I was job hunting. It’s just that it never really paid off; only one of the jobs I’ve had in my life came from an ad in the paper.
I haven’t really looked for a job since 1996, which was when I found my last job. After I was laid off, we ended up taking the candle business full time in May 2001 and it took off in a huge way. That was the best – working from home (although we worked constantly, night and day), no phone work at all, being creative and doing something I enjoyed….all while being here for the kids while they were growing up.
Now that the business has slowed down so drastically, I’ve started looking around again for some very part-time work to make a little extra money. But I’ve discovered that job hunting the way I used to is a thing of the past. It’s all online now, and I’m pretty much clueless.
Gone are the days of just scanning everything to see what might be a possibility. Now you need to focus on a career or specific occupation, unless you want to page through thousands of various jobs all across the country. For someone like me, with no college degree and no specific occupation, this is really difficult. I can search for things I know I’ve done in the past, but I’m such a dinosaur that many of those jobs don’t exist anymore. Nobody seems to hire file clerks or word processing operators, much less keypunch operators. (ha ha…even if the machines still existed, I wouldn’t know how to use them!)
Since I know I want very part time hours, probably no more than 15 per week, the best I can do is use part-time as a keyword search. Even that is not a lot of help, but at least it’s something. And now many jobs I know I’m perfectly capable of doing require a degree. When I first entered the job market, you could easily start low in a company and work your way up with just a high school diploma and a high level of intelligence. (Hello, thank you, that is me!)
So I scan the ads, reject the idea of most of them (many things, like data entry, require you to also cover for the receptionist like I did at my last job…NEVER AGAIN OHMYGAWD) and keep on looking. Why can’t it be like it is in the books I read? In one, this nice lady (who loves to cook) loses her husband to an unexpected heart attack. A bunch of different single guys on her block then approach her to see if she’ll make them dinner for a weekly fee. (Come on, really?!) In another, a lady has a traumatic brain injury and can no longer do her high-powered executive job. Eventually she learns how to ski using accommodations through an organization that helps disabled people modify equipment, so they can keep skiing and doing recreational activities they enjoy. And gee, they lose their director and she would be PERFECT for the job! If only real life worked that way.
Anyway, it’s been interesting, job hunting in 2013. I don’t have the in-person social network that I did when I was younger, or I would just put out the word and figure I’d get a job that way. I’ve wracked my brain trying to come up with another home-based business that does not involve selling anything (or buying materials and making things from scratch, like we did with the candles…too expensive in the long run, which is why we tapered the business back). So far I haven’t come up with anything, but the candle business was never planned — it just kind of happened — and it turned out to be great while it lasted. Who knows what might come my way this time?
As of today, Dave is in his third week of treatment and so far he is doing really, really well. He hasn’t had any side effects beyond the ones he noticed right away – the dry eyes/skin, and being tired later in the day as well as the day after he takes his PEG-interferon shot. (In other words, we don’t plan big activities for Thursdays!) He was a little disappointed not to have the weight loss side effect; he was joking with me about a week after his treatment started, saying he was probably going to be the only one who gained weight while doing the treatment! Seriously though, he’s maintaining his weight and eating well. We never had bad eating habits to begin with (fast food once in a blue moon, otherwise we make all our meals from scratch with very, very little processed food involved). Now that the weather is warming up we can start taking our daily walks again. So all in all, this is going much better than we imagined it would!
The next monkey wrench will be when he adds in the third (and final) medication, Victrelis (boceprevir). I suspect this medication tends to give people rashes, because the Nurse Practitioner, Mita, mentioned this more than once. If he adds in the Victrelis and still doesn’t have any bad side effects, we’ll both be very relieved!
We went down to Hines VA hospital on Wednesday for Dave’s first official labs since starting his treatment. He doesn’t have diabetes, but the medication tends to raise blood sugar so Mita wanted him to fast just for this lab so she could check his fasting blood sugar. The lab opens at 7 and we live about 45 minutes away (by car) from the hospital. Dave usually takes his Ribavirin at 6 am, but he has to take it with food (to prevent stomach upset) and that meant he couldn’t take it until after his blood was drawn. We didn’t want to get his meds too far off schedule, so we headed out early in order to get him in right away for his labs. That would give us the chance to have breakfast in the hospital cafeteria so Dave could take his meds, and then he had an appointment with Mita at 9 am.
Dave was up around 4 am, and I slept in (!) until 4:50. Neither of us ate (he was fasting, I was fasting in solidarity with him) and after catching up with things online and getting an eBay order ready to ship, we were out the door a little after 6 am. We made good time and they took him right in when we got to the lab. After that we headed over to the cafeteria to get some much-needed coffee and some breakfast.
After we finished eating, Dave handed me the receipt for safekeeping. I noticed it had a little grid on it, so I took a closer look. Every item we ordered had the calories listed! I thought that was really cool, especially if you were an employee that ate at work every day. It’s so easy to overeat, but if you know ahead of time how many calories you’re consuming, it really helps. Of course, I didn’t notice this until after we were done eating, but it’s good to know for the future. I also belatedly realized that the calories were listed next to every item on the sign they had at the station we ordered from. I didn’t realize that at first; I thought they were numbers you could use to quickly order. (Kind of like when you go to Burger King and order a #5 or whatever.) Wouldn’t that have been hilarious if I ordered my food using the calorie counts?! Luckily I didn’t finish all of my food, and I gave my toast to Dave, or I would’ve ended up eating more calories than him (definitely not something I need to be doing).
Then we proceeded to walk off every single one of those calories…I should’ve worn walking shoes that day! We spent the next hour and a half walking all over the hospital, exploring. It is seriously huge! We even walked past a door ominously marked “Weapon Cleaning Room.” (!)
Mita had Dave’s test results, all except his viral load count, by the time we arrived for his appointment. His blood sugar was what it normally is, and his platelets went down a bit but they were still over 100 so they were still at the low end of normal. His hemoglobin was also lower than his baseline count from last month. She said if those numbers go down further, they might adjust his Ribavirin dosage. That also explains why he’s been more tired than usual. Other than that, his numbers were okay and she didn’t change his meds. We go back in two weeks, on May 8, for the third and final class and also for his next set of labs (not fasting this time). He’ll get his next month’s worth of meds and we’ll learn about Victrelis and its side effects.
I guess the viral load number takes a while to process, so Dave is calling on Monday to find out what it is. Hopefully it will be much lower; this will show that the medicine is working and clearing the Hep C virus. The goal is for the virus to be cleared by week 8…if that happens, his treatment will go on for another 20 weeks and he’ll be done. Much better than being in treatment for almost a year!
After the appointment, we headed down to a health fair the VA had going on in their auditorium. It was very, very loud (as those types of events tend to be) but if you got 15 signatures from various booths, you were entered into a raffle…and Dave was determined to enter! We had a good time going around and talking to everybody. Back in the day I would never try to make small talk with so many people in such a loud environment; I would hang back next to Dave and just listen (and smile).
We stopped at a booth dedicated to both colonoscopies and Hep C treatment. Mita was supposed to be manning the Hep C portion but she was still running her clinic, so we chatted with the colonoscopy fellow. I snagged a book, Colonoscopy for Dummies, and when we got home I left it in the bathroom for some appropriate bathroom reading. Dave came out that evening, waving the book at me (he does not ever, ever want to be reminded of his colonoscopy prep, which he claims was worse than going through chemo). He said, “Why is this in the bathroom??” and without a beat, I said, “Well, it’s the most appropriate place in the house. You can read it and it will scare the shit out of you.” It caught him off guard and I must say, we got a long, much-needed laugh out of that!
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!
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!