Each time I lost my hearing (1993 for my right ear, 2008 for my left), I was surprised and disappointed by one thing: I was not offered any type of support for dealing with such a monumental loss. And this is not to say anything bad about my audiologists and doctors, because I really like them. But other people have mentioned it too, the lack of resources, information and support for late-deafened adults, or anyone suffering from sudden loss of hearing.
In 1993, the only thing offered to me was a different type of hearing aid, a bi-CROS that brought in the sounds from my newly-deaf side. I was thrilled with my new hearing aids, so no complaints there. But I had lost so much hearing that I could no longer hear my alarm clock for work each morning. I had NO idea that there were ALDS (assistive listening devices) for hearing loss, beyond an amplifier for the phone. The audiologist didn’t tell me about them. My husband at the time was the one who talked to the audiologist and found out about an alarm clock that would shake the bed to wake me up. I mean, they sold them right in the office – why wouldn’t she offer that information, knowing I had just lost all the hearing in my right ear and had a profound loss in the left?!
The internet was in its infancy in 1993, so the alarm clock and new hearing aids were the full extent of support I received. In 2008, my loss was much greater because I was now completely and totally deaf. They couldn’t offer me hearing aids. I didn’t know sign language, and neither did any of my family or friends. Yet again, once I got the hearing test that confirmed I was hearing absolutely nothing, I didn’t receive any information on how to deal with being completely deaf. That just blows my mind.
They put me on steroids to see if my hearing would come back; just like in 1993, they didn’t help. When I went back in for the follow-up visit, I was prepared. Thanks to the internet, I had done my own research. I knew I could receive a free TTY if the doctor signed off on it, and I knew about cochlear implants. I was the one who asked if I could get CIs (although hopefully if I hadn’t immediately asked, they would have offered it as an option). I was the one who asked if they could help me get the TTY. I found the state lending program that also gave me a flashing light for the phone (not that I was using the phone at that time).
Can you imagine losing all your vision, going to the doctor and having them say, “Well, yep, you’re blind,” and then sending you on your way? You have to hope they’d give you a list of resources for cane training, a service dog, learning Braille, programs to voice text for you, etc.
I didn’t find online sources of support until 1997, when I suffered from a horrific ear infection in my good ear. I spent almost two weeks without my hearing aids, using just the very limited hearing in that ear – it was already profoundly deaf, and I spent much of that time with my ear filled with medicine and covered with a cotton ball. I was a single mom at that time, and I was scared at how close to ‘deaf’ I really was. I had been able to fool myself into complacency with my hearing aids, and not having them to rely on really scared me. So I started searching for hearing loss support groups, hoping to meet other people like me. I have never interacted on a regular basis with someone that had hearing loss, so I didn’t have any real-life support of that type.
I found the Say What Club, and they are still active today. Back then, it was just one or two mailing lists; you signed up and they assigned you to a list, and then you would receive everybody’s emails. That was where I first learned of CIs and many of the ALDs I’m familiar with today.
I also joined SHHH, which later became HLAA (Hearing Loss Association of America), and ALDA, the Association of Late Deafened Adults. These are large organizations that have websites with lots of information, newsletters/magazines, and yearly conventions. Nowadays I am also a member of Illinois Cochlear Implant Chapter, which has local meetings every other month.
If you’re dealing with hearing loss, whether it’s recent or not, it can really help to be part of an online support group. I love email because it eliminates communication barriers; real life meetings are also nice because all the ones I’ve been to are captioned with CART. Now that I have my CIs, I usually don’t need CART to understand at a meeting, but it is still hit or miss whether I’ll understand a question from someone in the audience. CART captions everything being said, and it’s nice to utilize it for those soft-voiced questions or for a speaker with a heavy accent.
Losing your hearing can really isolate you. It’s tempting to want to stay home and avoid social interaction because it’s so exhausting, trying to read lips and follow conversations. It can be disheartening to be part of a large group and have no idea why everyone is laughing. Being part of a support group means that these people know what it’s like to have a hearing loss, and they don’t mind doing whatever needs to be done to be understood. At conventions, you’ll see people facing each other and reading lips, signing, writing notes. I still remember our first ALDA convention in 1999, when we joined others for dinner and dancing. We didn’t know how those who were deaf could follow the beat, until some friends showed me and Dave that if you hold onto a balloon, you can feel the vibrations of the music. How cool is that?!
Hopefully audiologists will catch on and realize that more needs to be done to support a newly-deafened adult. I would be curious, if anyone out there is a parent of a child who was diagnosed with hearing loss, if they were offered sources of support and help by their audiologist. Is it just adults who are sent off to deal with this on their own?
I know what I was doing 16 years ago on this day. I was originally planning to go out with a friend of mine. I can’t remember if we were going to see a band or just go to a club, but she ended up canceling on me at the last minute. So I was sitting around with nothing to do when Dave called me in the early evening.
We’d been online friends for a while at that point. We were both on a hearing loss support group mailing list called the Say What Club. I joined in Sept. 1997 and Dave was already a member, so he welcomed me to the list. We were good friends, and then in early 1998 we started to kinda like each other. 😉 We chatted via IRC and talked on the phone (not our favorite thing to do, obviously, but it wasn’t bad because we both understood what it was like to use the phone when you have a hearing loss). But we hadn’t met in person yet.
My kids were young, and they spent every other weekend at their dad’s. This was their ‘Dad Weekend’ so I was alone with no plans. When Dave asked what I was up to, I told him about my canceled plans. “How about if I come over?” he asked, sort of jokingly. I laughed and then he said, more seriously, “It’s only about a two hour drive. I really could come over if you want.”
So we made plans, and then I waited to hear my doorbell ring. Neither of us had cell phones or GPS, of course, so Dave wrote out his directions from MapQuest. Then he proceeded to get very lost. He couldn’t call me, so he just kept driving around, hoping he’d find my street. (There are two streets with this name in my town; he was on the wrong one because he didn’t realize he had to specify ‘west’ in the directions.)
About one and a half hours past when I was expecting him, when I was starting to think he’d blown me off, the doorbell rang. And there he was on my front porch, wearing a black leather jacket and looking just like his pictures.
Once he came in and we hugged hello, he told me the saga of his drive from Michigan to my house in Illinois. He brought in his WebTV, which was his way of connecting to the internet in 1998, and we plugged it in so he could show me how it worked. I showed him my computer; he scoffed and said he couldn’t see why he’d ever need a computer – he could do everything he wanted with his WebTV. (I do still like to tease him about that every now and then.)
We just hit it off immediately, and all the worries I had (maybe there would be no chemistry in person, maybe he’d take one look at me and want to leave, maybe he’d have weird habits that I wouldn’t realize until he was in my house, maybe he’d be an axe murderer) flew out the window. We went to see the movie Titanic (and the ALDs in the theater didn’t work, grrrr) and went out for an 11:30 pm pizza at Giordano’s (Dave’s first taste of Chicago-style deep dish pizza).
And here we are now, 16 years later, with this date inked on our calendar every year. We always celebrate with a deep dish pizza (now it’s from Lou Malnati’s) and I’m always thankful that Dave took that chance and made that two hour drive to meet someone he previously only knew online.
Thanks, Say What Club, for introducing us!
Since January, I’ve been noodling around with an online MIT OpenCourseware class called Reading and Writing Short Stories. It’s been a lot of fun; I love reading short stories, and I thought it might be fun to try writing some because I haven’t done that since high school.
This was a short exercise, one where I didn’t take a lot of time on the actual writing. The goal was to show how things that happened in your life could be changed and used as story ideas. Although there were so many incidents I could have drawn from, this one from when I was very young was the first thing that popped into my head.
My problem was trying to use it in a fictional scene. It took a while, but I decided to go with karaoke because that was sort of close to me and my brother using a microphone as kids. I threw in a person with hearing loss because I always like it when I read fiction and there’s a character with hearing loss … it doesn’t happen often, so it’s a nice surprise for me. Since the scene was supposed to convey strong emotion, I had the fictional character react in a completely different way than I would (which was kind of fun to write). I had her react with the same level of out-of-proportion anger and indignation that I felt as a six year old.
Here’s the exercise: Think about an event early in your life that is still powerful for you – that made you cry, or afraid, or angry, or triumphant with revenge. Sketch it out – focus on the emotional power. Now – make it fiction. Change something. Change character, change ages, change place, gender – see how this changes the center of the story.
My nonfiction and fiction scenes:
It’s 1970, and we’re in the living room — my dad, my brother Joey, and I. I’m six and Joey is four, and we’re taking turns speaking and singing into the microphone attached to the hi-fi. My dad was so proud of this system, and we kids loved watching the amplifier needle jump whenever we used the microphone.
We’re all sitting on the couch, which is nearly the same shade of brown as the paneled walls. I’ve got my feet propped up on the coffee table, slouching back against the cushions, waiting for my turn at the mic. Finally, I get to sing. I belt a rousing rendition of Susy Snowflake, making sure to hold that last note for as long as possible. I begrudgingly hand the microphone over to Joey, and my dad ‘interviews’ him.
“What do you want for Christmas, Joey?”
“I want a gowbidge truck!”
“A what?” My dad grins, knowing the real answer, playing dumb to give Joey a chance to mispronounce garbage again.
“A GOWBIDGE truck! A big one!”
The interview ends and Joey starts to sing a song he learned in preschool. I am apoplectic. “But it’s MY turn! He already got to talk!”
My dad, always calm in the face of my youthful rage, tells me that I’ll get my chance soon – just let Joey finish his song. But I am furious – it’s so unfair! I feel they always favor Joey because he’s the baby of the family.
I stand up in a huff, ready to stomp off to my bedroom, where I can slam my door and pull all the sheets off my bed and expend all the rage inside of me. As I walk between the couch and the coffee table, my dad’s foot slips out just enough to catch mine as I walk past. I trip and fall to my knees.
“You TRIPPED me!” I wail, and then the tears come. I sob and sob, feeling unloved and unwanted, as my dad tries to cover his smile, telling me it was an accident. He didn’t do it on purpose.
I argue with him for a minute, because I am absolutely 100% certain it was not an accident. It was intentional. But there is no swaying him, and finally I get to slam my bedroom door, fling myself onto my bed, and rail at the injustice. Every sound, every word, is captured for posterity on the cassette tape in the deck. Over the years, I could never listen to that tape without my face burning hot with embarrassment.
Becca leaned forward and shouted in my direction. I watched her lips move, but couldn’t understand a word over the background noise of the bar. “What?” I shouted, fighting off a wave of irritation. I turned my hearing aid up a little more, which just made the clamor louder.
This time she leaned sideways, aiming her mouth at my ear. I reared back, pulling my ear out of her reach. For someone who’s known me most of my life, she should really know better. Talking into my ear is completely useless; I need to see her face, so I can read her lips. I twisted around to face her and leaned forward. “Say it again, Becca. I didn’t catch it the first time.”
Exaggerating the movement of her mouth, she yelled slowly, “I. Signed. You. Up.”
“What does that mean? Did I hear you right – did you sign me up for something?”
“Yes! Well, I signed ME up too, but we’re both on the list now.”
I shook my head, sure that I was misunderstanding. “The list? What list?”
“Karaoke!” she grinned, raising her glass. I just stared at her, stubbornly anchoring my glass to the bar. There was no way I was toasting this insane idea.
Why would Becca, my friend who watched me suffer through years of music class in elementary school, silently mouthing the words to songs so my classmates couldn’t hear my tone-deaf voice, sign me up to sing in front of a bunch of drunk strangers?
“Are you pissed at me for something? Is there some reason you want to deliberately humiliate me?” I realized I was shouting. I couldn’t hear myself very well, but I could see heads swiveling in our direction. Ignoring them, I continued. “Of all the things in the world, singing in front of people is my worst nightmare. And you KNOW that. What the hell, Becca?”
Becca looked stunned. And a little drunk. Frowning, she said, “I’m SORRY, I never thought you’d be upset. I didn’t do it on purpose. I just thought it would be fun!”
“Bullshit!” I yelled, grabbing my purse off the bar. “I can see you trying not to laugh. Go ahead, see how funny it is when you’re trying to get home tonight!” I waved the car keys at her as I stood up to leave, fighting back tears.
If she protested, if she tried to apologize some more, I never heard her because I never looked back. Slinging my purse over my shoulder, I headed straight to the parking lot. All I wanted was the safety and the quiet of my car.
– – – – –
If you like to write, it’s a fun exercise to try. Give it a shot!
Earlier this week, the hospital called to confirm an appointment. We missed the call, so Dave listened to the voicemail while I watched the captioning scroll by on the phone. They were confirming my Friday morning screening mammogram (the one I get every year at this time), and at one point in the captioning I read, “Please be here at 8 am for chicken.”
The captioning on our phones is usually good for a laugh, and this was an especially good one. I even joked about it on Facebook, envisioning a mouthwatering meal of chicken awaiting me when I arrived for check-in (what I assume they really meant).
Alas, there was no chicken … just your standard boob-smashing. This is my ninth mammogram, and before I got my first one I was a bit anxious. As a woman, you lose a certain amount of modesty once you reach the childbearing years; if you aren’t getting an annual breast exam and pap smear, then you’re submitting to frequent pelvic exams (and then some) when you have a baby. There’s just no way to go through these things and be shy about exposing your body a bit.
As a kid, I was horribly modest. I wouldn’t wear halter tops and felt self-conscious in a bikini. If a dressing room had no doors, I refused to use it. This last one drove my mom crazy because we used to frequent a few stores that had this setup. There was just no way I was taking my clothes off in a room full of strangers, with no privacy. Sometimes she could get me to change clothes if she hung up all my stuff in such a way that it gave me a de facto curtain, but more often than not I dug in my heels and refused.
If you’d told me then that someday I’d let someone manhandle me for about 15 minutes during a mammogram and I wouldn’t even blush, I would never have believed you. (I also would have sworn, at that tender age, to never have a mammogram, the same way I swore to never have babies because it meant I had to have blood drawn.)
Mammograms don’t bother me at all, really. They don’t hurt; the technicians are always really nice and laid-back, and have a way of putting you at ease in what could be an uncomfortable situation. The hospital I go to has a really cushy center for mammograms that I kind of enjoy visiting, so it’s all good.
The waiting room is fairly huge (with a kitchen and snacks and all kinds of goodies) and I never know what direction the technician might be coming from to call me back. Usually when I’m in a waiting room, I’m on high alert. I might hold a magazine and glance down every now and then, but I always make sure to position myself where I can see as they come in to call people. I look up at any sign of movement and read lips to see if they’re calling my name. This time, though, I sat back with a magazine and became engrossed in an article. I did get a little nervous because technicians were coming from both directions, usually where I couldn’t see them at all, and oftentimes I couldn’t really understand what name they were saying. Someone else always jumped up, though, so I knew they weren’t calling me. Just when I was in the middle of a really interesting article, I heard my name. The tech was around the corner where I couldn’t even see her, and I still caught my name with no problem at all. That was a first for me!
Afterwards, we went home and Dave started coffee. I had just turned on my computer when I heard him talking. Turns out our bald squirrel friend was on the deck, eating sunflower seeds, and Dave was having a one-sided conversation with him. This broke my heart because it was so cold that morning, right around seven degrees F. I was glad he’d made it through the night, but I knew we had a bitterly cold weekend coming up.
Dave set a cat carrier outside, put some peanuts and pecans way at the back of the interior, and left the carrier door open. He left our patio door open a crack, and waited for the squirrel to take the bait. He was holding a long wooden stick that he planned to use to slam the door shut once the squirrel was fully inside. The whole time, he talked to the squirrel and encouraged him.
I couldn’t watch, but I hovered in the periphery. After about ten minutes, just as the water for our vacuum pot coffee maker was beginning to boil, I heard the cage door slam. Dave held it shut with the stick, stepped out onto the deck and latched the carrier all the way. The squirrel was strangely calm, which surprised us both; no chattering or foot stamping, just hanging out on the piece of berber carpet in the carrier.
It was about ten minutes after 9 am and Willowbrook Wildlife Center had opened at 9:00. After we high-fived, we carried him out to the car, buckled the carrier in, and drove him over. About 20 minutes later, he was in triage and we were giving our information to the admittance clerk. She came back to let us know they were thinking he had mange, which is treatable. After we talked for a while, we gave them a donation (not required, but we wanted to) and headed home, a little stunned that it had all happened so quickly.
It was a pretty great way to end the week.
Dave and I were watching a movie the other night when the phone rang. It’s too far away from the living room to read the caller ID display; normally we’d pause what we were watching and get up to check, but this movie was being streamed through Dave’s computer and we couldn’t easily pause it. So we figured we’d just check to see if there was a voicemail when the movie was over.
About 15 minutes later, Dave cocked his head and then jumped up. I couldn’t figure out what was going on – he was acting like he heard something, but all I’d heard was the sound from the movie. He went to his computer and paused the video, then went down to answer the door.
My mom was standing on our front porch, brandishing her laptop. “Did you get my message?” she asked as we invited her in. “No – wait, did you just call?” Dave said as he took her laptop from her. “Yes – I don’t know what happened but all my stuff disappeared. All the stuff written on the top, how I get to my bank and Facebook …”
She went on to explain what was missing as we brought her laptop into the dining room and opened it up. She uses Internet Explorer, which I’m not familiar with (I use Firefox and, before that, Chrome) but it sounded like she was missing her bookmarks toolbar. I took a chance and right-clicked in the toolbar area, got a drop down box, and saw that her Favorites toolbar was unchecked. I checked it and voila … all her bookmarks showed up again.
After I showed her what I’d done to bring it back (I know it’s easy to accidentally click on things and have toolbars appear and disappear) we headed into the kitchen to feed her some of Dave’s birthday cake (coconut cake with a wondrous Swiss meringue buttercream frosting that I discovered this year … way, WAY better than the kind with powdered sugar which I find to be too sweet).
I knew she’d been out to visit my brother and his family the night before and that they were going to a Halloween party, so I asked what they dressed up as. I heard her say, “Joe was broccoli.” I thought, well, that’s kind of different but it could be a cute couples costume if his wife went as another type of veggie or food. I was distracted at this point, trying to picture how they made the costume (or maybe they bought or rented it?) and I heard my mom saying something about cutting a wig for him. Then I envisioned a green (curly, maybe?) wig, or maybe it was more of a head topper thing and not really a wig, and she just trimmed it so it wouldn’t get in his eyes?
I was in a bit of a reverie, imagining how this costume had come together, and my mom was still explaining. “Yes, he had a black eye, and blood on his face …”
“Wait, Mom,” I interrupted. “What did you say he went as?” Bloody black-eyed broccoli was just not making sense.
“Rocky,” she said. “You know, Rocky Balboa?”
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.
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…..you 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?!
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!
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.)
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!
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.
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.