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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.

Happily Ever After

Earlier today on Facebook, my sister-in-law posted a picture of her husband.  He was taking clothes off the clothesline, and she captioned the photo thusly:  “To all you young gals out there……this is what a sexy man looks like after 37 years of marriage.  To all you gals my age… know what I’m talking about!”

Can we get an AMEN?!

I always tried to tell my kids to focus on more than just looks when it comes to a significant other.  I know they come into play a little bit as far as initial attraction goes, and that’s inevitable.  I suppose if Dave and I were really turned off by each other’s looks, we might not have become a couple.  I don’t know – I can’t test that theory because it isn’t the case (wink wink).

What I do know is that we originally had no idea what the other person looked like; this was in the earlier days of the internet when it was a little tougher to get a photo posted online.  We had been corresponding for a few months before I ever saw his picture; he snail-mailed me an envelope of photos to scan for him so I could post them on the Say What Club (SWC) photo page, which I maintained at the time.

Because we initially just corresponded via email (privately and through the SWC) we really got to know each other well.  We wrote long emails and eventually moved on to IRC chats, which were more real-time than email and better than a phone call since we both had hearing loss.

Although we originally met online 16 years ago this month, September 1997, we didn’t meet in person until the very end of March 1998.  We had a lot of time to talk and not be swayed by appearances.  I had seen his packet of photos when I scanned them, and I think he probably saw one or two photos of me that were on the SWC site.

When we met in person and he started coming to visit on a regular basis, one of the first things I noticed was how helpful he was around the house.  I’d come out of the shower and find him washing the kitchen floor; he did dishes and laundry, cooked and cleaned even in the early days of our relationship.  I actually figured it would wear off, that he was just trying to make a good impression on me.  As the years went on, I realized it was just the kind of person he was – and ever since, we’ve had this kind of unspoken partnership as far as housework was concerned.  If it needed to be done, one of us would do it – we didn’t divvy up chores or make a big deal out of it.  There was no resentment, no keeping track of how many times he emptied the dishwasher or that kind of thing.

We do have a couple things that are our exclusive domains – yard work and the garden for Dave, anything to do with money, bills and the checkbook for me.

Back to my first paragraph – seriously, nothing was sexier to me than seeing him pitch in like that from day one.  At the end of the day, I’m not falling into bed exhausted, angry and resentful because I did all the work while he sat around or whatever.  There was a mutual respect going on (still is) and that does wonders for your love life!  I imagine it goes both ways – if I was just lying around while he did all the work, I’m sure he’d be pretty irritated with me at the end of the day.

In the early days, I worked outside the home and Dave was here with the kids, but we’ve been working together from home since 2001.  We spend all day, every day together.  Even after being together for over 15 years, I still sometimes just stop and marvel at how much I enjoy being with Dave.  I love talking to him and just hanging out with him.  We talk and joke around all the time; I never run out of things to say to him.  It amazes me that we found each other the way we did, especially considering we lived in different states and have a nine year age difference.  Originally our hearing loss was the main thing that brought us together.  Who knew that we would just completely enjoy each other so much, so consistently, for all these years?!

Me and Dave in our younger days, probably the first year or two after we met

Me and Dave in our younger days, probably the first year or two after we met

I know I don’t look much like I did 15 years ago when we first met; we’ve both gotten older, put on some weight…time has begun taking its toll.  But when you have a strong friendship and respect for each other, all that physical stuff just falls away.  That’s what I kept trying to impress on the kids:  Looks don’t stick around.  Make sure this person is someone you totally love spending time with, talking to; make sure you respect them and they respect you.  That supersedes all the superficial looks stuff.  What’s sexy is not when your husband grabs your butt as you bend over to empty the dishwasher … it’s when they reach around you to help you empty the dishwasher.

It doesn’t hurt if the guy does laundry, too.  Hubba hubba!

Tomatoes, Fambly, Cochlear Implants

1.  Our tomatoes are starting to ripen, so I took a photo of the four types of heirloom tomatoes we appear to have in our garden.  The small plum-shaped tomatoes are Amish Paste; the larger plum-shaped tomatoes (with kind of an indent in the center) are San Marzano.  (Confession time:  We had these mixed up, and it was only when I referred back to the catalog for this blog entry that I realized this.)

Four types of tomatoes from our garden - 2013

Four types of tomatoes from our garden – 2013

The two types of mystery tomatoes are round, and one is no longer a mystery now that they’ve ripened up.  We confirmed that one type is from Russia, called Nature’s Riddle.  We originally thought it was a pink variety, and then we realized the top was actually yellow.  We ended up finding them in the Striped section of the catalog – the top ripens to golden yellow and the bottom becomes a salmon-pink color.  Pretty cool!  The others are still a mystery … but they are very pretty, we have a lot of them and, luckily, they are delicious.

2.  The family is doing well:  Dave is starting to feel better – his graft versus host issues seem to be letting up a bit.  Paige set out on her own and has moved in with some friends, so we are wishing her well as she moves on to this next stage of her life.  Eric came out for a visit over the weekend and is still enjoying his life in the big city; we had a great visit and got to watch the first two episodes of The Heroes of Cosplay with him.

3.  When I originally got my cochlear implants, I worried for a while over whether I should just get one or do both ears at the same time.  One of my concerns was that having two CIs would double my costs.  So far that hasn’t been much of an issue, but now I’m considering an upgrade and that money thing is coming into play.  Advanced Bionics has a new, just-approved-by-the-FDA processor called the Naida CI Q70.  It is VERY COOL and has lots of new capabilities that I would love to have; it’s also smaller, has an option to wear it off the ear and also to use regular batteries if I want (instead of the AB rechargeables).  I’ve had my CIs for just over five years now, so I qualify for an upgrade through insurance (not sure though if they will pay for one or both – I’m waiting to find that out).  I would still have to pay 20% out of pocket, though, and that comes to a few thousand dollars that I don’t have.

Luckily, I don’t NEED an upgrade – my Harmonies work just fine.  Since there’s no urgency, I can save some money and wait a while before I upgrade.  (We don’t use credit cards, remember, so no slapping down the plastic to pay for these babies!)  I won’t be able to even consider an upgrade until 2014 sometime.  So it’s exciting and a little agonizing (the wait, that is) but ultimately I’m pleased that they aren’t out of reach for me.  In the meantime, I’m paying attention to all the feedback from those who do upgrade right away…by the time I get them, I should be pretty well-versed in everything they can do!

Feel the Noise

Dave walked from window to window, peering out in a futile attempt to find the source of the noise.  “Where is it coming from?” he puzzled, craning his neck out the deck door.  I could hear it too – voices, loud talking, laughter, and frequent, ear-piercing high-pitched shrieks and screams.  Mostly shrieks and screams, to be honest.  It was driving us crazy.

Earlier in the evening, we drowned out the cacophony with a super-loud episode of Orange is the New Black.  (So different from the book, but still awesome.)  But we were done with TV for the night, downshifting into Just Before Bed mode in front of our computers.  And our computers are situated in our dining room, next to an open window right by all the screaming.

Dave hissed, “I can’t see anything.  They aren’t in the backyard, or up on their deck; I even went downstairs and looked through that window to check.”  I listened for a moment, then said, “That’s definitely the little kids next door.  I would recognize their screams anywhere.”

All summer long, we’ve been listening to these kids (probably about 5 and 8 years old, give or take a year) scream and shriek.  They don’t seem to be capable of being outside without screaming all the time, right by our windows.  (If not in the backyard next to our dining room window, then on the sidewalk in front of our house, so we can hear them screaming while we watch TV.)  We never say anything, of course.  Kids will be kids, and these aren’t bad kids…just the noisiest kids we’ve ever heard.

During the day it’s aggravating but not a big deal; I’ve kind of gotten used to the constant shrieking, kind of like hearing a dog bark all day long.  But last night was an anomaly; it was fairly late for little kids, almost 10:30 at this point.  It really sounded like the whole family was having a big, rollicking party in the back yard.  Hence Dave’s amazement that nobody seemed to be out there, at least that he could see.  There weren’t even a bunch of cars in the driveway to indicate extra people at the house.  All he saw was the lights shining brightly from the interior.

We finished up our computering (Candy Crush Saga Level 160, whoo!!) and headed off to our bedroom, on the other end of the house.  By this point, one of my CI batteries had died so I was down to one ear, and I could still hear the shrieks and piercing screams perfectly in our bedroom.  It sounded like they were on OUR deck, or just under our bedroom window.  I checked the rest of the neighboring yards, in case someone else seemed to be having a party, and all the yards were dark.  (Apparently we aren’t the only non-partiers in our neighborhood, heading to bed by 10:45 on a Saturday night.)

I felt bad for Dave, who still has some hearing when he takes off his hearing aid.  Isn’t that a weird thing to say?  Usually I’m bemoaning all that I don’t hear without my CIs (um, that would be everything) and here I am, feeling sorry for Dave because he still has some natural hearing.  All I had to do, though, was slip that other CI off my ear and BOOM…total silence.  It was like someone slapped duct tape over every mouth next door.  (What?  No, I haven’t fantasized about doing that…who, me?!)

After Dave took off his hearing aid, I asked if he could still hear them.  I knew how loud it still was, even on the other end of the house and hearing out of just one ear, so I figured he could.  He claimed it was fine and not bad once he had his hearing aid out.  And I gave thanks that I have this unique ability to go from silence to sound at my choosing.  It’s one of the few benefits of being deaf and having cochlear implants.

This morning, Dave looked bleary-eyed and said he didn’t want to take our usual early AM walk.  “I think I twisted my back somehow, when I was sleeping.  Who knew sleeping could be so dangerous?!  And man, I gotta tell you, those kids were screaming for hours last night.”  He yawned and continued, “But I swear, they weren’t outside.  I think they were actually in their house, in the lower level with the patio door open.  I looked and looked, and never saw anybody outside.”

So it was a mystery, our late-night shriekfest.  Dave is hopeful that, since school is starting later this month, the evening parties (or whatever it was) will die down.  I figure that if they keep it up, one of the other neighbors will call the cops on them.  (It won’t be us, especially since I can turn off the noise if it gets too bad, but the neighbor on the other side of us isn’t so generous.)

Summer is filled with loud noises, especially since we have our windows open.  If it isn’t screaming kids, then it’s lawn equipment, motorcycles, train whistles – you name it.  I’m glad that I’m not forced to listen to this noise pollution if I don’t want to.

After we finished breakfast today, I heard someone start up a loud, whining piece of equipment outside.  It sounded like a leaf/grass blower; I especially hate those.  I smiled at Dave and said, “Looks like this is a good time to take my shower.”  And I slipped off my CIs and went happily into the silence.

Dealing With Tinnitus

One thing I haven’t talked about here in a long time is tinnitus.  I’ve always had tinnitus in varying degrees; it ramped up quite a bit when I lost all the hearing in my right ear in 1993, and then settled down again after a while.  Usually it would go away when I put my hearing aids on.  My brain seems to just go a little crazy when there’s no sound coming in, so it likes to make it up, I guess.

If I had tinnitus when I was wearing my hearing aids, then it usually signaled an impending illness or it was a side effect of stress.  I’ve never had tinnitus as a result of something I ate or drank (caffeine, for example) or from medication.  All the advice floating around on the internet regarding changing your diet to eliminate tinnitus was useless to me.  If I was sick, or about to get sick, I got tinnitus and nothing stopped it except becoming healthy again.  If I was stressed out, I could usually count on the tinnitus fading away once I introduced sound via my hearing aids.  At night, or any other time I didn’t wear my hearing aids, I had tinnitus again.  (Sometimes I could keep a fan running at night and the white noise would keep the tinnitus at bay, since I still had some natural hearing before 2008.)

If you’ve never had tinnitus (ringing or sounds in the ear) then it is really hard to describe.  You definitely hear the sounds, but you can tell they aren’t coming from an external source.  It always sounds different to me – sometimes it’s a low hum, sometimes chirps and beeps, and I’ve also had tinnitus that sounded musical.  It roars, it clicks; some days it’s like Morse code, some days it’s like a train rushing through a tunnel.

Whenever I imagined being deaf, I always imagined dead silence.  Hearing nothing.  Just a big void, if you will.  When I actually lost all of my hearing, I was horrified to have sound replaced by tinnitus.  It was loud and constant.  There was no way to make it go away, because there was no way for me to hear.  I couldn’t introduce sound like I used to.

If I dwelled on it too long, it would’ve made me truly crazy.  I mean, I had noise in my head all day and night long; the only time I got relief was when I was sleeping.  For me, being deaf meant being locked into a prison of constant, hellish internal sound.

Since I knew there was nothing I could do about it, I tried to embrace it as much as I could.  I took comfort in the fact that at least it gave me the semblance of hearing something.  It wasn’t like someone just flipped a switch and my world suddenly went quiet.  Knowing I was at the mercy of this noise, I just did my best not to fight it and, when I could, to find humor in some of the crazy sounds tumbling around in my head.

In those early days, it was just TINNITUS, in the middle of my head.  I couldn’t have told you which ear it was coming from; it just was there, everywhere, not one side or the other.  Now when I get tinnitus (very rarely), it’s easy to pinpoint which ear it’s coming from.  I have it a little bit as I’m typing right now; my CI processors are off while my wet hair air-dries.  I have a very low, constant hum in my left ear, and my right ear has a high pitched whine that sometimes turns into chirps and clicks.

The difference now is that I know once my hair is dry, I’ll put on my CIs and the tinnitus will melt away.  I’ll hear the sounds of my environment and not the sounds in my head.

Getting cochlear implants completely took away my tinnitus.  I had tinnitus after surgery (sometimes very VERY loud, like a roaring train) but once I was activated…poof, it was gone.  The first time the house was quiet and I was wearing my CIs, sitting there in actual silence, I actually got teary-eyed from relief.  It was so nice just to hear nothing at all.

Now I hear silence all the time.  If it’s quiet and I have my CIs on, there’s no tinnitus.  If I have my CIs off, I usually don’t have tinnitus.  It might sneak in, very quietly, but not enough to bother me and definitely nothing like what I used to experience.  If it does ramp up and get crazy, then I know I’m either stressed out or getting sick, just like before.

If you suffer from tinnitus, I know how miserable it is.  Believe me.  For me, the only cure has been sound…either through a hearing aid or cochlear implant.

Slowly Becoming Obsolete

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!)

Silver Linings

We’ve had a spate of hot, extremely humid days here in Illinois.  (Thankfully they ended yesterday, but we have more to come starting this weekend.)  As luck would have it, the a/c in our car seems to be dying a slow death.  We were driving home from grocery shopping on Monday and I turned on the air after a few minutes.  Warm air was blowing out, which is normal after the car’s been sitting and the interior is so hot, but it never got any colder.

“Um, I think something’s wrong with the a/c,” I suggested.  Dave put his hand in front of the vent and then shook his head.  “Nah, it’s fine, it’s just because it’s so humid.  *something something* can’t evaporate because there’s so much moisture in the air.”  We were almost home at this point and I just ended up opening the windows in the car.  I had a bad feeling, but I can’t argue car stuff with Dave because I have no auto knowledge to back it up.

As we did errands the next day, I noticed again that the a/c was blowing tepid air.  I left it running for a while to see if it would get cooler, and I played with the various settings to see if anything helped.  It never got colder.  This time I was more firm.  “There’s definitely something wrong with the a/c.  It’s not working.”  Dave fiddled with the knobs and then reluctantly agreed with me.

I played it casual, even though not having a/c in the car is a big deal to me.  “We’ll just open the windows, no big deal.”  Most of our errands that day were quick and in town, so we weren’t driving on highways or for long distances or leaving the car to sit in the hot sun in a parking lot.  Still, though, we were shouting to hear each other over the road noise and wind.  My hair looked ridiculous when we got home; I had to wet it down and completely restyle it.  (You can’t just run a brush through curly hair – water and gel are about the only things that tame my hair.)  The hair thing is trivial, but the hearing thing is a big deal to us.  We tend to leave the windows shut and the air on even if it’s not 90 degrees with 97% humidity like it was that day.  Since the car interior gets so hot on a sunny day, even in spring or fall, we’ll put the air on if we have the windows shut…and we keep the windows shut so we can hear each other in the car.

“Well, crap – what’s going to happen when we have to drive on the expressway?”  Dave sighed.  “I guess we need to have it looked at.”  He called and made an appointment for next Tuesday morning.

This is our first big frugal hurdle.  We’ve always had two cars at our disposal, so if one needed repairs we could drive the other.  Now we’re down to one car, so we’re at the mercy of others to follow us to the repair shop and drive us home.  (Thanks, Mom!)  I actually thought about renting a car, and then remembered that you usually need a credit card to do that.  We no longer use any credit cards at all.

Which brings us to the next big hurdle:  How much will it cost?  Before, we never worried much about car repairs because we could put the expense on a credit card.  We winced as we handed the card over, but we didn’t really give it a second thought.  Now we’re depending on hard-earned savings to cover whatever the repair costs will be.  Not only do we worry it will be more than we can afford, but we also hate knowing that we’re taking such a hit to our savings.  But that’s what it’s there for, right?  It’s just a big adjustment, getting used to the cash and debit card lifestyle.

Then this morning I put in a new pair of contact lenses.  I’ve been wearing bifocal contacts for about three years now, and I can’t even express how much I love them.  I marvel all the time at the way they make my eyes feel young again.  But let’s be honest…they’re expensive.  And I order them online.  With a credit card.

Now, we’ve been getting around the ‘need a credit card to purchase’ situations with our PayPal debit card.  I refuse to use the debit card attached to our bank account for online purchases.  I’ve had credit card numbers compromised enough to know that it’s entirely possible a thief could get a hold of it and wipe out our bank account before we knew it.  But the PayPal account usually just holds enough money for the purchases we need to make.  I haven’t given the PayPal debit card access to our checking account to cover any charges beyond what we already have in our PayPal account.  That way, if someone does get a hold of our PayPal debit card number, there won’t be much (if anything) to take.  Any charges bigger than the meager amount we have in our account will just be declined.

We did play with the idea of buying Visa/MasterCard gift cards, but it bugs me to pay a $4 or $5 fee just to buy one.  So for now, the PayPal debit card thing is working out fine.

So I knew I was down to my last pair of bifocal contacts.  I usually buy three boxes at a time and, with shipping, that costs around $150.  (Crazy, I know.  But worth it!)  I also knew that I had two ‘back up’ pairs of regular contacts, and one pair of bifocals with a lesser bifocal strength than the ones I’m using now.  Since we have this looming car expense, I reasoned that I could wear the regular contacts for two weeks, and then the weaker bifocals for another two weeks (and save one pair of the ‘back up’ contacts just in case).  That would give me another month before I have to use the last pair of my current bifocals.  I usually place my order when I open my last pair of contacts, and by the time those are ready to be switched out my new order is here.

Sounds good, right?  Save some money, use up some of these older contact lenses I’ve been hoarding…win/win.  Well, I put the regular contacts in and all was well.  I can see great at long and mid-distance.  I was prepared to be using reading glasses for, well, reading and other close-up things.  It’s a pain in the ass, but definitely doable for just two weeks.  Ah, but I forgot about the computer.  And I spend a LOT of time in front of the computer.

I sat here squinting and trying to decide if I should get my reading glasses.  Finally I gave in, and ahhh…there are the words, crisp and clear!  But when I switch to looking other places than the computer, it’s a jolt.  My eyes have to take a while to adjust again.  With the contacts, everything is seamless.  I look at the computer and see perfectly.  I glance away at something in the distance and see perfectly.  I look down and read the keys on the keyboard perfectly.  There’s no adjustment period.

As I started to apply the very minimal makeup I wear every day (concealer for my dark circles, and a small amount of eyeliner) I realized I couldn’t see my eyes clearly in the mirror.  I could see well enough to get the concealer on, but getting that fine line with the eyeliner was a no-go.  I can’t see the line of my eyelid well enough.  I had completely forgotten how hard this was before I got my bifocal contacts.

I hesitated, not wanting to misjudge and stab myself in the eye with the eye pencil.  I tried putting on my reading glasses, but if I pushed them down on my nose so I had access to my eyes, then I couldn’t see through them.  I ended up lifting them UP and peering through them that way while I quickly lined my eyes.  (No, going without eyeliner is not an option if I’m leaving the house!)

So yes, these are very much First World Problems, and they aren’t complaints, just observations.  Once I get my bifocal contacts again, I will give extra thanks to whoever invented these wonderful little gems.  Hopefully our car won’t use our entire savings account to cover the repairs.  At least we have a car, and have the money to fix it.  And even if we didn’t, we can live without a/c in the car – it’s just a huge inconvenience for two deaf/HOH people in the humid Illinois summer weather.  It’s icky but it won’t kill us.  (It’ll just kill my hair for the day.)

To cap off this triad of Debbie Downer topics, we got Dave’s final Hep C viral load count…and it went UP.  From 4,000 to 9,950.  When he talked to Mita, she said they would have pulled him off the treatment for sure because his number needed to be less than 100 to continue.  Dave was less disappointed by this than I was.  He kept reassuring me, saying that he reacts to things different because of the bone marrow transplant and his subsequent years of graft-versus-host disease.  And I know that’s true, but it was just so disappointing, you know?  He went through all of that for nothing.  It bothers me to know it went back up so quickly; it would have been nice to hear that he’d cleared the virus, even if it didn’t stay that way for his three month test.

Well, anyway.  He’ll get another viral load test at the end of October and we’ll see how much it’s gone up by then.  Maybe there will be a trial he can get into in the future; at the very least, there should be some new medicines available through the VA in 2015.  Everything we’ve read is encouraging as far as the condition of his liver for the next couple of years; even without clearing the virus, the treatment did help bring the number down quite a bit and that is good for the health of his liver.

Silver linings – they’re everywhere; you just have to look for them.

Talking to Strangers

As of yesterday, Dave’s been on his Hep C treatment for two months.  For the past two months, he’s been making the trip to the VA hospital (about 45 minutes away by car) to get his blood drawn, check in with Mita (his nurse practitioner) and pick up his meds for the next two weeks.

We have the routine down pat:  Leave the house around 7:15 am, get to the hospital around 8:00 and go straight to the lab.  Pull a number and wait until your number is called.  Get your blood drawn (never a problem for Dave, whose veins are a phlebotomist’s dream) and then find a way to kill some time until the 9:00 appointment with Mita.

When we got up to the 13th floor yesterday, Mr. S was already in the waiting area outside Mita’s office.  He’s very soft spoken, with just a touch of an accent, so I make sure to read his lips carefully when we chat.  It takes a few minutes of talking with him to get used to the volume of his voice and the cadence of his speech, and then it gets easier for me to understand.  Dave still has a hard time hearing and understanding him; he will usually sit very close to Mr. S and lean in when he talks to hear him better.  (Mr. S knows we both have hearing loss; hopefully he realizes that’s why Dave always leans toward him when he talks.)

I wasn’t feeling well when Dave had his six week visit so I didn’t go with (the only appointment I’ve missed so far) but Dave had filled me in on how Mr. S was doing.  (Apparently they lowered his Interferon dosage a second time.)  I asked Dave how his viral count was coming along and he said he didn’t even think to ask.  So I made sure to ask yesterday – and Mr. S has cleared the virus!  (I think he said he cleared it at the six week point.)  This is awesome news – he is on his second round of treatment because the first treatment didn’t work.  It gave us even more hope that Dave will get good news when we get his next viral load count!

Mita called us back to an exam room and another doctor was there as well.  I got a little lost amongst the introductions and wasn’t quite sure why she was there; I assumed she was visiting or maybe in training or something (I’m used to that at my audiologist’s office) but Dave told me later that she’s a new attending for the GI/liver department.  She spent quite a while talking with both of us, and Dave explained his history as far as the leukemia and bone marrow transplant that he had in 1993.  She examined him and then said his blood work looked good; it showed that he might be a little anemic (but nothing worrisome) and his platelets were good too.  Because everything has been stable for him, they kept his medication dosages the same and…drum roll, please…he gets to wait four weeks before his next appointment!

I did ask the attending if this eight week viral load count is the ‘magic number’ and she said it’s actually the 12 week count.  I was under the impression that if his number was under 100 at eight weeks, he’d have 28 weeks of treatment.  The attending made it sound like the 12 week number would be the determining factor, and then she said 24 weeks of treatment (instead of 28).  So now I’m a little confused; I know I heard Mita correctly when we were in the classes but I guess we’ll find out for sure when Dave has his July 3 (12 week) appointment.  Either way, the viral load number wasn’t back yet because the in-house lab doesn’t process that test; they have to send it to an outside lab and it usually takes five to seven days to get the results.  We’ll know more next week.

From there, we went down to the outpatient pharmacy to pick up Dave’s meds.  His name wasn’t showing on the board yet so we went out for a walk to kill some time.  When we came back, his name was listed and we knew his meds were ready so he got in line and I sat down in the waiting room.  After a few minutes, I looked up and saw that Dave was talking to our neighbor.  It was such a weird coincidence, running into him at the VA!  After he turned away from Dave, he caught my eye and called across the room to me.  I asked how he was doing and I could swear he said he’d had a stroke a couple weeks ago (I still don’t know if I heard him correctly); I got up to move closer to him so we could talk without shouting across the room.  He said he was doing better and that his daughter was with him; I turned and saw her sitting behind me so I greeted her as well.  (She babysat my kids a couple of times back in the late 90s and I haven’t really seen her since then – I didn’t even recognize her all grown up!)

We got on the subject of our deck (he was complimenting the work Dave did on the stain) and I was talking about how much work it turned out to be.  A man in a wheelchair nearby chimed in and said that he used to seal and stain decks for a living (and that all the women said their husbands called him to do it after they did it one time, saying they would never do it again…I can believe that).

After our neighbor and his daughter left, I sat down in the chair she vacated which was next to the fellow in the wheelchair.  He turned to me and started talking some more, adding, “I’ll talk to anybody!” with a smile.  I told him that I had a hearing loss and used to never make casual conversation with people I didn’t know, in case I might have trouble understanding them.  He proceeded to tell me a story about how he dated a girl in high school who was deaf in one ear; when they went for walks, she always tried to place him on her ‘good’ side and he resisted until she finally explained why.  I had such a nice time chatting with this man while I waited for Dave; at one point he asked me which was my ‘good’ side and I explained that I had finally lost all of my hearing five years ago and got cochlear implants.  I finished with, “Now both sides are my good side!”

I always had a rule in waiting rooms and other situations where I was sitting or standing with a bunch of people I didn’t know:  Don’t make eye contact.  If you avoid looking people in the eye, they generally don’t try to start a conversation with you.  It was always my biggest nightmare; a well-meaning, friendly person would make an off-hand comment or try to start a conversation with me and I’d be stuck smiling and doing the Deaf Nod, not understanding a word they said and hoping they weren’t asking me questions (or that I was responding inappropriately).

It’s taken nearly five years but I’m finally starting to shed this long-held habit of mine.  I started testing the waters when Dave was with me, so if I missed things he could fill me in.  If we were in a store (or watching a demonstration, like at the ReStore a few months back) I would make eye contact and talk to the employees or the product reps.  This was my first foray into having a casual conversation when Dave wasn’t there to rescue me.

Later that afternoon, we stopped in a Goodwill store and when we were checking out, the (very friendly) cashier said, pretty much out of nowhere, “I know five words in sign language!”  I’m still not sure what prompted her to tell us – if she saw Dave’s hearing aid, maybe.  Back in the old days, I would have just smiled at her and not said much of anything in response.  This time, I told her that I had gone deaf a few years ago and never really learned sign language, so she probably knew more than I did.  We got a good laugh out of that, and I asked where she was taking her classes (because I do still want to take a class if it’s local and affordable).  Turns out she’s a college student so she’s taking it through the community college, but we had a good time sharing the few signs we both know (Dave got in the act too, since he knew more than either of us).

I know it doesn’t sound like much to most people, but for me it is really eye-opening to have these fun, casual conversations with people I don’t know.  It’s helping me overcome some of my shyness, and giving me confidence as far as my ability to make small talk (something I’ve always been very bad at).  Just being able to look people in the eye and not be nervous about them saying something to me is very freeing.

We aren’t able to make it to the Portland Hearing Loss Association of America (HLAA) convention this month, but I can’t wait for the next convention we can get to – it will be awesome to actually talk to the vendors in the Exhibit Hall without being terrified!

Adventures in Deafness

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”

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!


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