Category Archives: Emotions & Attitude

Worrying for nothing

I have a tendency to worry about things, especially events where I have no idea what’s going to happen.  I’m sure part of this is just my personality, but I think part of it comes from growing up with a hearing loss.  I learned the hard way that arriving in a situation unprepared for what might happen was twice as difficult for me to navigate as it would be for a hearing person.  If I wasn’t sure where I was supposed to go or what I was supposed to do, I would have to ask somebody.  If I was lucky, I would actually be able to hear and understand the instructions I was given.  What usually happened was that I’d ask, be given an answer that either I couldn’t hear at all or heard part of, and then one of two things would happen:  I’d go off in the wrong direction, looking like an idiot, or I’d ask for the information to be repeated, and not hear it again the second time.  THEN I’d go off in the wrong direction, too embarrassed to ask for a third repeat.

So I started planning things as much as possible.  I’d try to find out as much information as I could to eliminate as much of the unknown as possible.  This works fine for certain situations, especially now that the internet is here with so much information at our fingertips.  For other things, there’s no possible way to know how things are going to go, so I just worry…usually for no good reason.

One of the things I was really worrying about was this surprise birthday party for my mom, which was held the last Saturday of June.  My brother came up with the idea and my first reaction was one of total dread.  I really dislike parties, partly because it’s so hard to hear but also because I have a hard time with small talk.  I’m fine if I get into a long conversation with one person but flitting from person to person, making small talk for 10 minutes or so each time?  Can’t do it.  I sit in a corner and people-watch instead.

Usually I just avoid parties, and now that I don’t work outside the home it’s much easier to be a hermit.  I don’t get invited to work events (company Christmas parties, picnics, wedding and baby showers for co-workers, meeting after work at a bar, etc.) so I don’t need to constantly come up with excuses.  Now that I’m older, the family events are fewer and fewer, as all of my cousins got married and the required showers and weddings are now far in the past.  Small get togethers are fine and I enjoy those, but it’s rare for me to be invited to a party these days.

Well, I couldn’t very well bow out of this party, so instead I worried.  This would be the first major event I’d be attending as a completely deaf person.  I didn’t know for sure who knew about my recent deafness, although I assumed it would be everyone in attendance since my mom keeps in touch with all our extended family members by phone.  To give myself an emergency exit, I warned my brother ahead of time that lipreading for an extended period really wore me out, so I might only stay for an hour or so.

I knew my reaction was really silly – of all the things to worry about!  The worst that could happen would be that I’d sit by myself for a few hours, which isn’t a big deal.  By the time the actual party day rolled around, I had kind of calmed myself down – playing the “What’s the worst that could happen?” game usually has that effect on me and helps me to see that some things just aren’t worth the time it takes to worry about them.

I’m happy to report that this event was one of those “not worth worrying about” things.  The party started very small, just me, my brother, his wife and her family.  This was actually great for me because I wasn’t plunged into a sea of people and faces, trying to lipread everyone at once.  People came by gradually throughout the afternoon, and I worked out a good system of sitting near the front door so that I could welcome people right away.  It gave me a chance to see them on their own, not surrounded by a bunch of other people, and lipreading was easy since it was the usual “Hi, how are you” kind of thing you say when you first see someone.

I was able to focus on and lipread people pretty well.  Much of the time I wasn’t involved in one-on-one conversations but rather observing a conversation between people I was sitting or standing near.  This took the weight off me because if I didn’t catch everything, there was no embarrassment.  But if I did catch a few things being said, I could interject and join the conversation briefly.

As more and more people arrived, I pretty much stayed in one place, sitting with Dave.  People would get up and leave and new people would join us, so we weren’t isolated but we also weren’t in the main group of people.  One thing that was hard to judge was how loud I should talk.  I had no idea if there was music or sound from the TV, or how loud the background noise of people talking really was.  Since Dave has trouble hearing in those situations, I tried to talk louder for him.

I noticed that I didn’t have any extra trouble understanding my brother’s in-laws, which was a nice surprise.  They’re from Poland and his wife’s parents have accents; his wife and her older sister have slight accents but I never had trouble understanding them.  I always feel terrible when I can’t understand people who speak with an accent – it’s more related to my hearing loss than their inability to speak clearly, but I feel like they think it’s because of the way they speak.  I have total admiration for them, learning a new language and becoming fluent in it…I certainly couldn’t do it!  So I really do feel badly when they talk to me and I struggle to understand them.  Well, for whatever reason, lipreading them was not a problem.  I think I actually understood them better at this party than I ever have!

We ended up staying for 4-1/2 hours, and really having a nice time.  I’m glad I force myself to do things that make me nervous – they don’t always work out well, but when they do it just gives me more proof that some things are just not worth worrying about.  Maybe someday I’ll be totally calm and worry-free!  😀

Let me show you the world in my eyes

A thunderstorm woke me up this morning.  It felt like someone picked the bed slightly up off the floor and then let it down with a thunk, followed by vigorous shaking.  One of our cats, Beanie (aka Sabrina) was sleeping with me at the time and it freaked her right out – she sprung up and leaped over my legs to get off the bed.  Between the bed shaking and the cat gymnastics, I ended up wide awake at 7:30 am.  (One of the luxuries of summertime…unless we have a morning appointment that day for something, we can sleep in!)

I was confused at first until I looked out the bedroom window and saw the neighbor’s tree dancing in the wind.  I put my glasses on and watched the storm from the comfort of our bed – the sky lighting up with lightning, the tree bending and snapping in the wind.  It looked like some kind of primeval dance, and it was even more beautiful because, with no sound to distract me, I was totally focused on the movements of the branches and leaves.

I love thunderstorms.  Bad weather doesn’t scare me – I think it’s fascinating.  (That said, I’ve never been the victim of a tornado or hurricane…I’m sure my feelings about bad weather would change if I had.)  When I was a kid, my parents would open the garage door, set up lawn chairs and we’d watch the storm play out from the safety of the garage.  I absolutely loved doing this – watching the lightning, hearing the thunder and feeling it shake the ground, smelling the rain, hearing it hit the driveway and street.  When my kids were about 4 and 8 years old, I thought I’d pass the tradition on to them.  We set up their little chairs in the garage, opened the door…and they were terrified.  They hated every second of it.  After that very brief episode, they never showed any interest in watching a storm with me.  In fact, Paige was really frightened by thunderstorms for a long time and I could never understand why.  She could see that I wasn’t nervous at all but that didn’t matter – she just hated storms!

Now that storm season has started here in Illinois, I’ve been grieving a bit over the fact that I can’t hear thunder any more.  I really have never been able to hear rain – I know I heard it as a kid, out in my garage, but never inside the house as it hit the roof.  But I always heard thunder, and I could actually hear lightning too – it would crackle like static in my hearing aids.  I’d hear the crackle and know that a few seconds later I’d hear the boom of thunder.  Oh, I miss it!  Darn it.

The weirdest things give me such a sharp stab of sadness now when I don’t hear them.  It’s not the obvious things anymore, like the voices of my family or the meows of my cats.  Now it’s the really mundane things that I miss.  When I’m operating the microwave, I realize that I don’t hear the beeps of the buttons as I’m pushing them.  I don’t know if I’ve pushed the “start” button hard enough to actually start it, so I have to watch and make sure the microwave starts its countdown as it cooks.  And of course, I never hear the beeps when it finishes.

I’m working out again (it’s been a while ::cough cough::) and none of the workout videos are captioned.  I can’t even think about doing the yoga videos, because I can’t contort my body and keep my eyes on the screen to lipread the instructor as they tell me what to do.  I’ve got my regular workout dvds pretty well memorized, so now I work out with the TV on “mute”, so it doesn’t bother anyone else in the room.  I do my weight lifting, my leg exercises, my aerobics in total silence.  Well, except for my tinnitus…and unfortunately, it doesn’t keep any kind of beat worth exercising to!  🙂

I can’t tell if my voice is getting gravelly, the way it does if you need to clear your throat.  I try to be mindful of how my throat feels as I talk, clearing it if I think I might sound hoarse.  I can’t tell if I’m talking to my animals in my usual high-pitched voice…you know, the way you talk to babies.  At first I think I was talking in kind of a monotone, and they weren’t responding to me the way they used to.  I made more of an effort to change my voice and I can tell when I’m talking in my “higher” voice – the cats respond instantly.  It’s so weird not to know if I’ve got inflection in my voice or not.

When I read about the sounds that people with cochlear implants are hearing for the first time, I think, “Oh!  I remember hearing that.”  It’s still hard to believe that just 2 months ago, I could’ve heard the keys on my keyboard as I type this.  I could hear my dog’s nails clicking on the tile floor in the kitchen, hear his tags clink against the water dish as he (noisily) slurps water.  I could hear motorcycles drive by in the street, hear the garbage truck as it approached (and run out to set the bins at the curb if I’ve forgotten).  I could hear the turn signals clicking in the car and hear gravel crunching under the wheels.  These are not beautiful, awe-inspiring sounds but they bring fullness to the day, give a 3-D aspect to otherwise mundane moments.  I miss them.

I still forget that it’s permanent.  This morning I got out of the shower (when I normally wouldn’t wear hearing aids, back when I wore them at all) and started to tell Dave, “Oh, hang on a second…” when I couldn’t hear him talking to me.  I was going to walk to the bedroom and put my hearing aids in.  Then I remembered.

I didn’t finish the rest of my sentence:  “…let me put my hearing aids in.  I can’t hear you.”

Old Habits Die Hard

Ever since I went completely deaf, I wake up in the morning and put my hearing aids in.  Every morning, without fail.  This is as helpful as putting in my contacts after I’ve lost all my vision, but still I persist.

The first week or so after I lost all of my hearing, I actually was still able to hear certain sounds if my hearing aids were in.  Well, I can think of two sounds:  our dog barking, and the high-pitched beep that my electric scale makes when it’s first turned on.  (I use it to measure fragrance oil when I’m making candles.)  That helped perpetuate the feeling that I was getting some help from hearing aids.  But within a week, even those sounds were gone.

For a while I turned them up as high as they would go, and that would help me get some vibration in my ears from super-loud noises.  That didn’t last long though, because Dave would tap me and say, “You’re squealing.”  Take the hearing aid out, turn it down a bit, look inquisitively at Dave.  He shakes his head; nope, still squealing.  By the time I got it to stop squealing, it was back at the old volume level.

And to be honest, even at the highest level they stopped giving vibrations eventually.  So here I am, wearing these totally useless hearing aids in my ears day after day.  It’s kind of funny, considering most people avoid wearing hearing aids even if they help them hear.  I remember my grandmother leaving hers in her dresser drawer all the time.  I know many people are self-conscious about how they look or hate the way they make things sound.

I loved my hearing aids.  I put them in as soon as I woke up and wore them until my head hit the pillow at night.  I was loyal to the brand (Beltone, which I know many people scoff at) and the type – I wore analog hearing aids all my life.  Those bi-CROS hearing aids were the best things I ever purchased and I absolutely treasured them and they way they made things sound.

Today is the first day I faced reality and didn’t put my hearing aids in.  They’re still in the bedroom in the little box next to my bed.  I started putting them there back in 1985, when I got my first cat.  Before Bear came along, I used to just lay the hearing aids on the nightstand.  (For some reason, I never used one of those Dri-Aid containers – nobody ever told me about them, I guess.)  Well, Bear decided that ear molds were tasty and dragged my hearing aid off the nightstand one night.  I was totally panicked when I woke up the next morning and couldn’t find it!  I eventually found it under the couch but I did need to get a new ear mold.  After that I started keeping my hearing aids in a little decorative box with a lid, to keep them safe from earwax-loving felines.  🙂  (Bear, by the way, lived to nearly 20 years of age – he was an awesome cat!)

I can’t believe how naked I feel.  For the first time in nearly 40 years, I’m not wearing a hearing aid in either ear.  I will never wear hearing aids again.

Waiting, Anticipating, Avoiding

Waiting is hard.  It feels archaic, compared to the instant gratification I’ve gotten used to in the internet age.  Although I can access my medical claims online, I can’t access anything that shows how the preapproval process is going for my cochlear implant(s).  All I can do is wait for a letter to arrive in the mail.

(Side note:  I’m typing this with a view of the kitchen reflected in the little mirror I’ve set up next to my monitor.  I just watched one of our cats, Allie, jump up on the kitchen counter (which is very, very rare for her – I think I’ve only seen her do this one or two times).  She walked over to a basket of cherries, sniffed, then grabbed one by the stem and jumped down with it.  She’s been batting it around, picking it up by the stem and flinging it, having a grand old time.  Her mom, Maxie, came over to see what was so exciting, and gave the cherry a couple of bats too.  I didn’t even have to turn around to watch this whole scene play out!)

So anyway, people ask what’s going on or how long it might be before I can hear again.  I have no idea!  I still marvel, though, at the fact that the question is actually possible.  “How long until you can hear again?” How amazing that it’s even an option!

Summer is here, the kids are out of school, and our days are pretty lazy.  Lately I seem to spend them trying to avoid one social event or the other.  Although my immediate family has been suitably impressed with my lip reading skills, they don’t extend well to long conversations with people I rarely see or have just met.  The only exception has been at the doctor’s office, but I assume that’s because everyone there is used to talking with people who are deaf or have some degree of hearing loss.

My daughter is gone with my mom and aunt (mom’s sister) on a cruise right now.  It’s an early 14th birthday gift to her from my mom – she likes to do a big vacation type trip when they become teens.  Paige’s trip got postponed one year for some reason I can’t even remember now; Eric chose a trip to Las Vegas when he turned 13.  Anyway, my aunt is in town and I only get to see her every few years since she lives in Tennessee.  She’s also got a hearing loss and wears a hearing aid; I know she has trouble hearing when we have conversations because I can recognize the confused expression and bluffing that I’ve used all my life reflected on her face.  Now it’s even more difficult for us to talk – I’m not used to reading her lips so she talks, I don’t get it, I bluff and say something I hope relates to the conversation, then she looks confused and she bluffs.  Then I wonder…is she confused because I gave an inappropriate response, or is it just that she didn’t hear my response?!

My mom’s got a 70th birthday coming up and my brother is throwing her a surprise party.  Her birthday is actually the day she returns from the cruise and her party is two weeks later.  My brother asked if I was okay with a party-type situation or if they should put it off until I get my CI.  I told him no, don’t hold back because of me – who knows how long it might be before I actually get my CI and after that, how long it might be before I can actually hear things?  But it was nice of him to even consider that it might be hard for me.  I did tell him I probably will leave after an hour or so, just because it’s exhausting trying to lip read for long periods of time.

I’m actually terrified of this party, to be honest.  There will be 20 or 25 people there, including family members I usually see once a year, if even that.  I’m assuming the family members know that I’m completely deaf now (if my mom told them, since they talk on the phone fairly frequently), but it’s one of those weird things that’s hard to bring up in conversation without it being awkward.  Obviously I’ll have to bring it up, so they aren’t surprised if I’m not following what’s being said.  It’s also possible that they’ll all just avoid me, assuming it will be too hard to communicate with me.  Actually, that would be just fine with me – I’ve already told Dave that his job is to sit with me in a corner, talking for an hour, until we can leave!

Seriously though, I know I can’t do that.  But ugh, it sucks to be so stressed out over something that should be fun and enjoyable!  I’ve never liked parties and rarely go to them, but mostly because I suck at small talk.  I love to engage one person in a long discussion about whatever we’re both interested in, but I dread and loathe flitting from one person to the next, making small talk for 15 minutes or whatever.  I guess I developed this preference because of my hearing loss but it’s totally affected my social development and now I figure, why put myself in a miserable situation?  But some parties just can’t be avoided.

I’m trying to keep this summer as void of social engagements as possible, other than going out with my husband and kids.  We did actually go to a restaurant for the first time since I lost my hearing – we took Eric to his favorite pizza place for his birthday last week.  Ironically, I think I did better in that situation than Dave did.  I was with my family, reading their familiar lips, with only my crazy tinnitus to distract me.  Dave, with his severe hearing loss, had to deal with all the background noise of the restaurant and the fact that he doesn’t read lips as well (although he does better than he gives himself credit for).  The only time I had trouble was periodically with Dave, since he was sitting next to me and I really need to be fully facing someone to read their lips well.

Next week, though, we’ve got Eric’s college orientation day.  It’s an all-day-long event that I had been so looking forward to before I lost my hearing.  Dave and I will go to the parents’ session and Eric will go off with the other kids, and we’ll meet up for lunch in between.  I did write and ask if they had any suggestions for me, since I don’t know sign language (to benefit from an interpreter), but they were at a loss as to how to help me.  There will be written information handed out, though, and a walking tour.  I’ve been on one tour already when we visited the university over the summer, so I won’t feel like I’m missing out on too much of the dialogue there.  For the rest of the time, I’m just going to lip read when I can and basically just take it all in visually.  I’m hoping we get to see his dorm, since we didn’t get to do that last summer.

Dave and I actually thought about buying a small laptop, like the Asus Eee, so he can type into it periodically and pass information on to me that way.  The only problem is that he’s also hearing impaired so he’ll probably be just as lost as me – usually in these situations (school orientations and open houses) he kind of zones out while I’m the one listening and lip reading.  🙂

Unlike the prospect of going to a party and having to socialize, this doesn’t stress me out.  I know I wouldn’t normally talk to anyone but Dave anyway, so I don’t feel like I’m going to be in this potentially embarrassing situation where I have to try to bluff my way though a conversation.  It just bums me out a little bit, to know I’m going to miss most of what’s being said.  I’m still looking forward to it though, just because it’s exciting for me…my baby going to college!  I never went to college so it’s all new to me, and I’m glad he’s getting this chance.

So that’s where I’m at.  Kind of a weird limbo.  But still, the first thing I thought to myself when I woke up today was, “I love my life.”  And I do.

Facing adulthood with a hearing loss

…so, I’m 28 and I’ve just lost the hearing in my right ear. Up until this point, my only accommodation had been amplified handsets for the telephone. With lip reading and my hearing aid in my right ear, I felt like I heard really well. I still missed a lot on the TV (captioning wasn’t an option that I knew about at this time, back in the very early 90s) but I turned the volume up and managed pretty well.

There was a 2 week period while I waited for a new ear mold to be made for my left ear, and during that 2 weeks I really floundered. I actually wedged the ear mold for my right ear into my left ear and wore my hearing aid that way, for as long as I could stand it each day. I never missed a day of work and didn’t miss any social events scheduled for that time. (I especially remember going to a shower…wedding, baby?…for one of my cousins at that time, and how awful it was to try to talk to everyone when I could barely hear.) I was so, so depressed and terrified. My husband at the time (Dave is my second husband) was as supportive as he could be, but he was at a loss to console me. What freaked me out even more was his response when I asked if he would take sign language classes with me. I assumed that if I was going to lose my hearing I would have to know sign language, and none of the doctors could tell me if I would keep losing more hearing. So this was the next logical step to me. Except my (ex) husband told me he didn’t think he could learn. He pretty much told me that it would be too hard for him and he wouldn’t do it. I was absolutely distraught – it made me feel like eventually I would be all alone with no way to communicate with anyone and nobody around me who was willing to make the effort for me. My son was only 2-1/2 years old at the time (my daughter wasn’t even born yet) and I was so sad, thinking I might never hear his voice as he grew up and his voice became more mature.

Once my bi-CROS hearing aids came in, though, life pretty much went back to normal. I wore the hearing aid in my left ear and the “receiver” in my right ear. I actually felt like I heard better with the bi-CROS aids because they gave the illusion of hearing from both ears. My hearing didn’t get worse and eventually, as the months passed and I stopped worrying, things settled back into their usual routine. It had been horrifying but losing the hearing in my right ear was a manageable event. I never did take sign language classes and I was able to hear all the things I used to be able to hear…it was just quieter once I took my hearing aids out for the evening.

My then-husband and I split up in 1996, when Eric was 6 and Paige was 2. I had been a stay-at-home mom for the past 2 years so it was a big adjustment, finding full time work and being a single mom with a hearing loss. I was happy though, finding out that I could absolutely do this and not depend on anyone. Even with all the stress involved, it was a really empowering time in my life. The job I got, as an administrative assistant in the Human Resources department of a local company, was fun but involved a lot more phone work than I was comfortable with. In fact, I had to cover the switchboard quite often, and that was incredibly stressful. However, my boss made it clear that in order to take the job, I had to cover the switchboard…so I agreed to give it a try. I had an extra amplifier and managed to get by. The hardest times were when people with accents called in, and this happened a lot because the company was originally based in Germany so many of the callers were from Germany. I’ll admit that a few times I switched people to a random department after a few fruitless moments of trying to understand them…I figured that whomever I switched them over to could probably understand them better than I did and could redirect the call to the proper place. :-0

I started that job in early 1997 and things were going merrily along until September of that year. I managed to get an infection in my outer ear (probably from scratching it, due to the ear mold making my ear itchy) – my left ear, the one that still had hearing. It was the most painful, awful thing I’d ever experienced, and the first time I’d ever had an infection like this. I was running a high fever and the pain in my ear was indescribable. I went to a walk-in clinic and they made it worse by forcing water into my ear canal to try to clean out ear wax (which they were never able to remove, by the way). I had to make an appointment at the Chicago Otology Group (now called the Ear Institute of Chicago), the people who had treated my sudden hearing loss back in 1993. They placed cotton soaked in antibiotics deep into my ear, prescribed drops and painkillers, and used a vacuum “thingy” to clean out the pus and wax in my ear. Once I started seeing them, the infection finally began to clear up. However, it was at least a week or more before I could wear my hearing aid.

During this period, I was completely deaf. I couldn’t hear the alarm to wake up in the morning, I couldn’t hear my kids, and I certainly couldn’t go to work and do my job. My ex husband stepped in and helped me out by making the doctor appointments and communicating with the doctor’s office – he arranged for me to get a vibrating alarm clock with a bed shaker, something I never knew existed before. My parents took my kids when I was in so much pain that I was pretty much unable to do anything but take painkillers and cry. It was really frightening and humbling to realize I wasn’t as self-sufficient as I thought I was.

Once things stabilized a bit, I realized it was just ridiculous…I needed a support group. I needed to acknowledge how much my hearing loss impacted my life, and I wanted to talk to other people who knew what it was like to live with hearing loss. The vibrating alarm clock was a total eye-opener for me and I wondered what other tools and accommodations were available to me that I had no idea existed. I was done trying to pretend I was exactly like everyone else. I don’t think a hearing loss means there’s something wrong with me, but geez, I obviously need some help that most people don’t. And I really don’t think there’s anything wrong in admitting that. For me, anyway, it’s taken a huge weight off my shoulders and relieved a lot of stress. These accommodations make my life so much easier, and I no longer want to pretend I don’t need them!

The first thing I did was turn to the internet. I’d been online since 1992 or 1993 or so, and had found support groups for other things I was interested in so I figured there must be groups out there for people with hearing loss.

I joined 2 or 3 mailing lists and ended up sticking with one, the Say What Club. A couple of the lists were actually newsgroups. This was the first time I was exposed to the difference between deaf, culturally Deaf, hard of hearing and late-deafened adults. The way I always thought of it (and still do), if someone says they are deaf then it means they can’t hear anything. If they can hear something, even a little bit, then they are hard of hearing. I didn’t know anything at all about Deaf Culture. Well, in these mailing lists I came across all kinds of people that identified themselves as deaf and then would mention being able to hear, albeit not very well. I thought, “Hmmm…maybe I’m identifying myself wrong. I should tell people that I’m deaf.” It’s easier to say, after all…less words, less stumbling over “hearing impaired” or “hard of hearing”. (I use both terms equally, to be honest – I know some people hate the word ‘impaired’ but it always described my hearing, which was definitely impaired, so I didn’t have a problem with it.)

I noticed a big change in people if I told them I was deaf. They’d look really nervous, and if I was with someone else, they would turn to that person and start talking. Everyone assumed that I could not hear at all, and that they couldn’t communicate with me since they didn’t know sign language. (It was also assumed that if I was deaf, then I knew sign language…like it’s something you learn automatically, by osmosis, as soon as your hearing goes.)

So I went back to identifying myself as HOH, and stopped assuming that if someone said they were deaf that it meant they couldn’t hear at all. This still puzzles me sometimes though. Now I tend to identify myself as ‘profoundly deaf’, meaning my loss is at a profound level and I can’t hear anything. I mean, I don’t hear jet engines, I don’t hear ANY loud noise at all. But I keep running across people who say they have a profound loss and then mention things that they can hear or that they hear certain things with a strong hearing aid. It blows my mind. Even with the strongest hearing aids they make, I don’t hear anything. How is it that these other people with a profound hearing loss can hear things? I mentioned this to Dave and he reminded me that there are different frequencies involved in hearing loss, which I’d forgotten about. I guess what I’m trying to say, though, is it’s really hard to convey, even to someone who also has a hearing loss, what degree of loss you have with just a word or two. All of the losses are so unique!

Anyway, back to the lists. I joined SWC and told everyone my story of my recent ear infection, being temporarily deaf and how it scared me. I mentioned wanting to learn sign language on my own, and just wanting to connect with people who understand. This list really opened my eyes and introduced me to some wonderful people. I didn’t feel alone anymore. I realized how many things I do…the way I react in certain situations, things I try to avoid, etc. were due to being HOH. It was wonderful to share with other people and find out I wasn’t the only one doing these things, like paying with a $20 bill at a drive-through because you have NO idea what the total was but you know a $20 will definitely cover it. 🙂

One of the first people to welcome me to the list was Dave. He sent me a huge box of sign language books and videos, since he used to teach a casual sign language class years back, before he ever lost his hearing (ironically). As 1997 came to a close, we became better friends and I really enjoyed emailing him. Originally I thought he was much, much older than me because he always called me “kid” and made references to his advancing age. I figured he was in his 60s or so. As 1998 rolled in, I finally saw a picture of him and realized he was in his 40s (I was in my 30s) and hey…he’s cute!

We met in person in March of 1998 and started a long-distance relationship. It took a while to get off the ground – when he started to become interested in me (before we met in person), I told him not to expect too much because internet relationships are hard to convert into “real life” relationships. You build this person up in your mind and then when you meet them in person, it rarely compares favorably to the person you had imagined. Even before that, originally Dave wasn’t interested in starting any relationships because he’d survived leukemia and a bone marrow transplant (which is how he lost his hearing) and felt like he couldn’t guarantee he’d be around long enough to see a relationship through. He told me this back when we were just buddies and I told him that was nuts…if he met the right person, he should go for it. So what if he might only be around for another couple of years…why not make them great years with someone you love? None of us has any guarantee as to how long we’ll be here on earth, anyway!

I guess I convinced him pretty well because he turned out to be my “right person” and I was his. I’ll go more into detail about our story in a future post, but to make a long story short, we got married in 2002 and celebrated 10 years together earlier this year. Every single day, and I mean this in all seriousness, I wake up and feel like I’ve been given a gift to see him lying next to me. I enjoy every second of every day with him, and we are together 24/7 (literally) so that’s a lot of time! In all these years I’ve never felt like I needed a break or didn’t enjoy my time with Dave. He’s my best friend and I’m still amazed that we were lucky enough to find each other!

Once I met other people with varying degrees of hearing loss, I finally felt at home with myself. I have absolutely no problem letting somebody know I can’t hear them – it’s not always the easiest thing to bring up, and usually I don’t mention it in quick, casual encounters. But if I miss something, or mis-hear something, I just tell the person I didn’t hear them. Now it’s different, since I don’t hear at all, but in the past I’d move my hair away from my ears to show them my hearing aids. I’d get a lot of comments like, “I had no idea – you don’t sound like you have a hearing loss!” I’m still trying to be very careful with my enunciation now that I can’t hear myself talk. My family’s told me that I’m talking louder now but other than that, I still sound the same.

When I started researching CI’s, my first instinct was to get a color that blends in with my hair. My mom was quick to tell me that I can hide the CI’s with my hair and nobody will ever see. But you know, I think I’m more apt to let the headpiece show. It’s not something I want to hide, and I definitely wouldn’t be ashamed of it. What a difference in attitude!

Looking back, I really wonder what kind of person I’d be now if I’d gotten more help when I was a child. And I don’t mean that I blame my parents for anything, because I don’t think I turned out all that bad. 🙂  I just mean, maybe I would have been less fearful and shy. I hated new situations and always wanted to know exactly what was going to happen, because I didn’t feel like I could ask for help if I needed it. I wonder if I would have tried more things and been more confident.

I’m not sure what type of ‘help’ I’m even talking about, or if I just mean acknowledging that I was struggling and needed help hearing/understanding in certain situations. I think I’ve been dwelling on this after reading all the stories of children with hearing loss lately. Things have come such a long, long way since the early 60’s and it’s really great seeing all the options available to parents and their children now. I think it’s wonderful that no matter what route they choose, these parents and kids can have a support group and not feel so alone.

I was trying to come up with a clever way to end this post but I can’t think of anything, other than that I’m glad I’m not alone. It’s not eloquent, but it’s true.

Growing up with a hearing loss

I’ve been making my way through all the books about CI’s that I can get my hands on.  Between all of this reading, my visits to message boards and daily messages that come from email lists I belong to, it makes me feel like I’m surrounded by CI users.  I told Dave that I keep expecting to turn around and see someone with a CI walking down the street…like they should be everywhere I turn!

The most recent book I finished was Bridge to Sound With a ‘Bionic’ Ear, which is actually a compilation of individual stories rather than one long story focusing on one person.  It was really interesting to read various accounts of how people came to choose a CI, how they lived with hearing loss, and how they felt about their CI after they got it.

I noticed that the parents of children who received a CI talked more about the controversy surrounding cochlear implants.  Many of them did extensive research and had to make a decision about how to deal with their child’s deafness – teach them ASL, go the verbal/oral route, etc.  They spent more time in their essays defending their choice of a CI for their child, whereas the adults who told their stories only mentioned the controversy aspect a few times.  I really feel for people who have to make this decision and add it to the list of things you have to worry about as far as your kids go.  There are already so many battlegrounds where raising kids are concerned:  breast or bottle, stay at home full time or work, circumcision or not, family bed or crib, spanking or time out, cloth diapers or plastic…etc. etc.

It made me think about how I was raised and how my hearing loss was dealt with when I was younger.  My hearing loss wasn’t discovered until I was 4 years old or so (I noticed this was a common theme in the book as well, in the stories shared by the adults with hearing loss).  Nobody ever figured out exactly when or why I lost my hearing, but I was hospitalized when I was a toddler — I had roseola and a really, really high fever (106 or 107).  My mom always assumed it was from the fever.  However, there are family members with hearing loss on both sides of my family so it’s really possible that it’s genetic.

In any case, apparently I had been reading lips well enough to fool everyone for a while.  My mom said she finally realized I wasn’t hearing her one day when my little brother and I were out in the backyard on the swing set.  She called us in for lunch and only my brother came in…I was still out there, swinging on my swing.  She realized that I would come in if I saw my brother coming towards the house, but otherwise I didn’t respond.  She knew it wasn’t a case of me being disobedient because come on…it’s lunch time!  What little kid isn’t going to come in for lunch?!  So she did her own little tests and realized I wasn’t hearing her.

I do remember going for many, many tests at Northwestern University in Evanston.  This is a pretty far drive from my childhood home (at least an hour one way) so my mom spent a lot of time taking me back and forth for hearing tests and various intelligence tests, to determine whether I should be mainstreamed in school or go to a special school.  She was really proud of the fact that I did well on the intelligence tests and went to the local public schools with no special ed classes.  I was fitted with a hearing aid for my right ear (which had a severe loss; my left ear had a moderate loss) and as far as I was concerned, it was just a part of me.  I never fought my hearing aid or was bothered by it.

In school, I wasn’t teased because of my hearing aid.  To be honest, most people probably didn’t notice it because I have long, thick, curly hair and rarely wear my hair up so it always covered my hearing aid.  I got more grief for wearing glasses than I ever did for wearing a hearing aid!  The only time I can remember kids being kind of shitty about it was when I was around 7 or 8.  I was at the local playground and some kids I didn’t know saw my hearing aid when I was hanging upside down on the monkey bars.  They started to taunt me and I told them it was a special tape recorder that could record their thoughts.  That completely freaked them out and they left me alone after that.  (Luckily they were young enough to believe something so ridiculous!)

In high school, as I started being more social and going to parties, I found out that a lot of people originally thought I was stuck up or a bitch because I’d ignore them if they said “Hi” when we passed in the halls.  I realized it was kind of a detriment that so many people didn’t realize I had a hearing loss.  I found out later that a lot of people assumed I was a burnout (our term for people who smoked pot…this was the late 70s, very early 80s…I graduated in 1982).  They’d see me at parties sitting by myself, kind of staring off into space, and assumed I was high.  The really hilarious thing is that I found this out when someone passed me a joint and I declined.  They seemed stunned when I explained that I didn’t smoke pot, and that’s how I found out that everyone assumed I was a burnout.  We got a good laugh out of it when I told them that no, I just did that because I can never hear at parties so I used to just sit back and watch people or listen to the loud, thumping music.

School itself was stressful for me, but I did well and got As and Bs.  I’m not sure if my mom ever mentioned my hearing loss to my teachers (I think she did) but the only real accommodation that I got was being seated in the front of the class.  Since I also wore glasses by the time I was 9 or 10, I’m not sure if this ‘front of the class’ thing was due to my vision or my hearing loss, to be honest.  I was one of those goody-two-shoes kids that the teachers loved, because I never talked in class (I couldn’t hear whispering so I never encouraged it from people).  I was always reading.  I did all right as long as the teacher didn’t walk around and talk, or talk while they wrote on the blackboard.

I can remember doing a lot of exercises where we had to listen to a cassette tape and then do corresponding worksheets…those were always hell for me.  Same with movies, which I just couldn’t understand (no lips to read).  Somehow I managed, though.  Teachers would always say that I needed to participate more in class discussions, but that was impossible for me since I couldn’t hear what the other kids’ comments and/or questions were.  I was always the quiet kid.

Although I always did well in school and could easily have gotten into college, it was so much work to understand everything that the last thing I wanted to do was continue with school.  The only field I was really interested in was psychology (I still am, actually) and I couldn’t imagine being a psychologist that couldn’t hear her patients!  I had no idea if there were any accommodations available to me in college, because the way I was raised, my hearing loss wasn’t an issue.  I had no idea there were any accommodations for a hearing loss, beyond my hearing aid and an amplified handset for my phone.

I distinctly remember my mom having a talk with me when I was young, although I can’t remember how old I was.  She told me in no uncertain terms that there was nothing wrong with me, and that I should never feel like I was ‘impaired’ because of my hearing loss.  I would get no special treatment, because I didn’t need it.  In her view, my hearing aid corrected my hearing loss the same way my glasses corrected my vision.

I can see now the benefits and pitfalls of being raised this way.  On the one hand, I never dwelled on my hearing loss and never thought I couldn’t do something because of it.  (Although, instinctively, I shied away from situations that are hard for people with hearing loss…for instance, as a teenager looking for my first job or two, I never considered being a waitress because I knew I’d have problems due to my hearing.)  I know it helped my mom deal with what must have been devastating news – feeling like the hearing aid corrected my hearing loss 100% made her feel like I was ‘normal’ again and just like every other kid.  Plus, how was she to know any different?  I was too little to explain that hearing through a hearing aid isn’t like natural hearing and it doesn’t get corrected the way vision gets corrected from glasses.

I lived this way until I lost more of my hearing when I was 28.  I knew I was always stressed out and a “nervous” person, but I figured it was just my personality.  (Now I realize it was actually from worrying about being put in a situation where I couldn’t hear well.)  People gave me a hard time for being quiet and not talking more in groups, for not liking parties or going out to bars and dance clubs.  I refused to ask for directions (I couldn’t hear the answer and would look like an idiot if I walked or drove off in the opposite direction from what I’d been told).  All these little things I never, ever attributed to my hearing loss because it just never occurred to me that it would affect me.  It’s amazing to me now when I look back at my life and see how much my hearing loss affected it.

When I lost the rest of the hearing in my right ear, it shattered me.  I was absolutely devastated and terrified.  For nearly 30 years my hearing had been stable.  It had gotten a little worse over the years (my left ear now had a moderate-to-severe loss) but nothing major.  I upgraded my hearing aid every 10 years or so and that was about it.  When I went completely deaf in my right ear, I had no hearing aid to fall back on.  I could still hear a little bit without hearing aids but fear of the unknown was the biggest factor.  Why had this happened?  Would it keep going and would I lose all of my hearing over the next couple of days?  Or would it happen again in a year or two?  How would I function?!

…This is getting very, very long so I’m going to finish this up in a day or two.  It’s the second half of my story, where I discovered accommodations and learned to be up-front about my hearing loss with people….how that changed my life and my attitude.  🙂

Acceptance

“Is this it?”, I wonder, “Have I just accepted it now? I’m not going to freak out, break down, be incapacitated with grief?”

I go through each day and do what I normally did. Nothing has changed, except I can’t hear. I still make dinner, do dishes, watch TV, joke with my family.

Am I really that strong that I just accepted this huge change in my life with grace? I go to doctor’s appointments and see the sadness in their eyes, and I want to say, “You have NO IDEA what this has been like. I look like I’m just taking it in stride but oh my GOD, I can’t hear!”

And I am not alone. So many other people have had this exact experience and they just go along, do what needs to be done. It’s amazing to me, the ability to adapt without missing a beat.

I had one big cry, the morning I realized my hearing was really, really bad. I wailed and sobbed, I told Dave I didn’t want to be deaf, I didn’t want to not hear his voice any more. As I cried I was thinking, “Well. I’m being a little dramatic here…I’m sure my hearing will get better and I’ll be embarrassed that I overreacted.” At that point, I had no idea that my hearing would totally abandon me. It felt good to cry, though, because I really was scared, terrified.

And then it happened, my hearing left me and … nothing. No more crying, no more feeling sorry for myself, no more wondering, “Why me?”

In one week, I will have been deaf for one month. A month! I can’t believe it’s nearly been a month. I looked at my audiograms today. My speech recognition in my left ear used to be 92%. Now for both ears it is NR – no response. I mean, I don’t hear anything at all. It still seems hard to comprehend.

So I wonder…am I just this amazingly strong person? I don’t think I am. I know a lot of people who’ve dealt with this kind of hearing loss and just went on with their life. Or maybe it’s the fact that we all dealt with it in a similar way, by looking for support (online mailing lists and bulletin boards). Maybe there’s a whole bunch of people out there who are not dealing with it, but they’re alone in their grief.

I can only speak for myself. I know that a major, major factor in my attitude is my family and their support. I am so lucky. My husband is my best friend and we spend all day, every day together. He never loses patience with me and he does everything he can to find ways to make communication easier. My kids treat me no differently – they still talk to me, tell me about their days at school. They make more of an effort to enunciate and, in Raven’s case, to talk a little slower (teenage girls can talk a mile a minute!) My mom makes an effort to stop by every other day or so, just to talk for a few minutes, give me a hug, fill me in on what’s happening in her life. My brother emails me at least 4 or 5 times a week – I probably talk more now to my family than I ever did!

I feel surrounded by love and by people who care about me. It would be a very different life if I felt like everyone was perpetually annoyed by how difficult it was to communicate with me now.

My biggest fear was being told “It’s not important, just forget it” if I didn’t catch something the first one or two times. To my family’s credit, they’ve never done that to me. They might have to pick up a notebook and jot down a word to help me out, but they do it without exasperation.

I did make a conscious effort to be the kind of person people enjoy being around. Positive, not reclusive. I mean, really – who wants to spend much time with someone who complains all the time? As Pollyanna as it sounds, I really did look on the bright side. This isn’t fatal. I can still move around, do what I want to do … I just can’t hear. It’s a huge change, but it’s not the end of the world.

I guess that attitude becomes a habit. If I woke up every day with dread, I probably couldn’t get through the day. And I don’t feel like there’s a reason to dwell on my recent hearing loss. It happened. And now life goes on.

Still though, really? I’m deaf, and it’s been a month, and the world hasn’t ended? I go through my day just like before, except now I do it with an endless cacophony in my head, a deafening absence of sound…and yet it’s nothing but sound, constant noise.

I go downstairs, rifle through the kids’ school supplies, find a lime green folder. This is my new CI folder.

Just like fall always felt like a new adventure, starting a new school year, this will be another new adventure. My road to (hopefully) hearing with a CI.

I’m smiling.

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