Feet on Both Shores or Stuck in a Row Boat Between

As a late deafened adult with progressive hearing loss, I often find myself with feet on both shores.  By that, I mean that I am hearing in many aspects, yet I am not.  I struggle to belong in the world of the hearing. 

Year by year, month by month, week by week, even day by day, I find it harder to survive; yet I don't feel comfortable or accepted by the deaf community because I do not fluently speak their native language (ASL) either. 

Without my hearing aids, I am severely and somewhat profoundly deaf.  With them, I am moderately deaf.  I cannot discern the direction of speech and I miss a lot of what is said around me.  Without them, I cannot understand speech at all.  I can read speech from your lips if I am aware of the context; I can decode your body language and facial expressions to understand your tone,  I can put it all together and manage to do what is expected of me, but I know that I miss a lot.

As my loss progresses, I try to become more involved in the Deaf community.  I am learning ASL and SEE.  I am trying to decipher the ridiculous politics involved with the Deaf community. I have sought out my own local Deaf community and found them to be practically non-existent unless I wish to drive an hour one way. I have taken steps to ensure my employability (is that a word?) by earning teaching certifications in deaf education and learning sign language.  I have volunteered at deaf schools and the Deaf Action Center only to be turned down or completely ignored.  I started this blog in an effort to educate my friends and family and to reach out to the online Deaf and Hard of Hearing communities as well as chronicle my experiences so that others who follow in my path or who find themselves in a similar situation might have some sort of guidance. 

But here I am, still wondering if I'm hearing or Deaf, still trying to find my place in this world, wondering if I have my feet on both shores or if I'm just adrift at sea in a row boat in between. 

Deaf for a Day...Sorta

If you are a regular reader of my blog then you know that I'm not completely deaf.  I have a progressive loss that stems from moderate to borderline profound.  My speech discrepancy levels are pretty bad but I get by fairly well with my hearing aids and only have a hard time in noisy places (ummm, pretty much anywhere in public) or with certain soft voices or accents.  I am also an excellent speech reader even though I've had no formal training.

You probably also learned that I hate hate hate hate hate hate hate being without my hearing aids.  In fact, I hate it so much that I would risk loosing them before I'd go into a swimming pool full of 3-year-olds without them, that I would run through my house tripping over fake wooden food, light up Dora shoes, and yesterday's newspaper just to change a battery before the cognitive dissonance of the unbalanced brain sets in, that my hearing aids are the first order of business and the last order of business of every day and every night of my life!

And you might also recall that I promised at some point in the not so distant future (probably while I was drinking), that I would go a day without my aids (I mean, I promised it while I was drinking, probably, not that I'd deaf and drink in public, well you know what I mean...I hope).  A day that included the public...and so that day has finally come and gone.

Why now? Well, I needed to get my ICom repaired before the warranty expired and I only had a week left.  I didn't know that they would send if off, then get it back, then tell me I had to leave my aids with them for half a day while they found some free time to reprogram everything.  Have I mentioned that it's a 45 minute drive to see my audiologist?

Well, I wasn't exactly backed up against a wall here; I have two back up pairs of Oticon ITCs; both are in excellent condition; although, neither pair is sufficient for my everyday needs.  I currently wear behind the ear aids which are quite a bit stronger than the ITCs (in the canal).  Nevertheless,  I reluctantly remembered the promise that I made my readers and decided that this was just as good a day as any to lay it all out there.  I say reluctantly because taking out my hearing aids can be disorienting, it almost feels like I've been drinking at first and it takes a few uncomfortable minutes to adjust to the world of silence.  I suppose it's also a cognitive struggle; my brain is screaming "Hey, this ain't right! Fix this now!"  But you do get used to it and the feeling of inebriation subsides after awhile.

My morning routine was not really affected by my deafness.  I told my daughter goodbye and sent her off to school with her dad.  But when I got in the car to drive to the audiologist's office, I started to put my hearing aids in.  It wasn't so much that I felt I needed them to drive as that I didn't want to drive 45 minutes without the radio on.  God, what would I do without music...I might have to think about stuff and that's not always a good thing.   I usually get to thinking and that means I'm thinking of which sale is where and what I need to buy and how I don't have any money but if the sale is good enough...well, you probably know what I'm talking about.  Or I start thinking about how bad food is these days and how processed food is going to kill us all and how there really isn't much on the grocery store shelves that's not full of poison and how I should start reading the labels a little closer; then I get paranoid.  So you see, music is a good thing.

I solved the problem by leaving the aids out and turning the music on anyway.  I realized that I could hear it just a little so I cranked it up.  I had to turn it up about three quarters of the way but I found that it sounded even better because I could not hear the background noise of the road and the big trucks whizzing by me.  It was actually a nice drive.  Of course, after about 10 miles into the drive, I remembered that I should probably make a little better use of my peripherals and I checked the mirrors every few seconds just to make sure there were no emergency vehicles ridding my tail.

When I rolled up to the office, I was once again tempted to put my aids in, but I stopped myself.  These people specialize in the hard of hearing right?  They should expect that I can't hear them when I'm standing there holding my hearing aids in my hand.  And I was right, it was pretty uneventful.  The lady at the desk spoke to me and I read her lips.  She said she would call when they were ready.  I didn't say what I was thinking, but you know I was thinking, "and how do you expect to have a conversation on the phone with me if you have my hearing aids?"

I spent the next hour in Marshall's shopping for new sheets and trying to waste time.  And for once, it didn't bother me that I got the broken cart, you know, the one that goes "click, click, click, click" when you push it.  I could feel that it was clicking, but I couldn't hear it.  The store was unusually quiet.  Somebody may have spoken to me when I came in; I didn't hear them if they did.  I knew I wouldn't, so I just put on my happy face, the one with the exaggerated grin that makes me look like a  horse sniffing a carrot and I did the dip and nod at anybody who looked my way--classic deaf, the dip and nod, I'm a Master Dipper!

After a few minutes, I felt the soft buzz a distant bass line humming through the air; I couldn't tell you if it was pop, country, gangsta rap, or Irish folk music. I loaded my buggy up with pillows and was on my way to the register, free and in the clear; nobody had tried to speak to me (I think), no "Can I help you?" I had avoided it all, sweet success...until that last ten feet when I barely heard and mostly saw her turn and say something that sounded suspiciously similar to Charlie Brown's teacher.  It was too late for the dip and nod, the murmur was too long for an "uh huh" response; I had to think of something, so I just blurted out, "I'm sorry; I'm deaf and I have no idea what you just said."

I always love to watch the reactions when you tell somebody you're deaf.  Most of the time, they drop their jaw and then they shut up, give you a polite smile and go on about their business.  But this lady was different.  She immediately moved around to the front of me, looked me in the face, apologized, and repeated slowly and loudly what she had said.  It was a nice reaction; although, I never expect people to apologize for my deafness.  How are they supposed to know unless I tell them?

My next stop was Half Price Books (see a pattern here? Yep, I'm cheap!).  I didn't hear any background noise in the store, not even a murmur.  Books stores are like libraries, I guess it's habit.  People see rows of books and they automatically assume silence.  When I checked out, the girl at the register tried to speak to me, and again, I had to tell her I was deaf and needed to see her face.  She had the regular, shut down and get this over with, kind of reaction.  I wasn't surprised; that's what most people do when they don't know you.

I checked my phone when I got in my car.  There was a missed call from the audiologist office.  I didn't bother listening to the voice mail, even on speaker phone and crammed up to my head,  I couldn't have heard it.  I picked up my aids and again used speech reading to get through the conversation with the lady at the desk.  I had planned to put them back in as soon as I got them back, but I remembered the sweet sound of the country music without the interference of road noise and I left them out for the drive home.

So truth be told, it wasn't that bad and next time I will challenge myself with new and more complicated situations; we'll see where it goes.

Also check out the Life In Mute Blog t-shirts and other deaf wear at my cafe press shop!

Random Act of Cowardice

I know I started a section entitled "Random Acts of Deafness," but today was more of a suck it up and bear it kind of day so I'll call this one "Random Act of Cowardice, " and you can bet on seeing more "Random Acts" soon.

My 2 year old daughter was invited to a birthday party by a classmate at school; nothing random about this, she gets at least one a month.But today was not an easy day for me.  This was a pool party.

Normally, my husband would take our daughter but he was sick this weekend so I had no choice.  Thirty minutes before the party, most moms would be standing in front of the mirror asking, "does my rear hang out of this swimsuit?"  Not me, the swimsuit wasn't the issue.  My problem is the $6000 pair of hearing aids I have to wear.  No, they don't make my ears look fat.  But they certainly presented a problem.

I faced two harrowing choices...I could wear my very expensive hearing devices into a swimming pool with a dozen screaming, splashing toddlers, or I could take them out and enter the pool full of strangers and their children almost completely deaf.

I'm not usually much of a gambler and I imagine that most Deaf people would laugh at me for this but I decided to risk it.  I gambled $6000 and I wore my hearing aids into the water.  I just can't stand to be without them and I hate having to explain to people that I wear hearing aids and that once I remove them, I hear nothing.  I hate the look on their faces, the pity, the false empathy, the confusion, the embarrassment as they struggle with what to say next.  The feeling that some poor kid could be drowning behind my back and I'd never know because I can't hear his struggling, gurgling, cries for help. I hate it all.

So you can call me a coward but I'd rather gamble than deal with my deafness in the midst of strangers.


...it paid off this time, I managed to avoid the splashes, and my hearing aids and my pride both survived!

deaf with a lower case d

One hot summer night in Austin, Texas, my best friend, Andrea, and a few of her friends were bar hopping down 6th street.  We decided to cut through one open bar to get where we were going, but something strange happened.  We entered the patio of a corner bar and were struck with dead silence.  We proceeded into the open air bar and couldn't hear anything but the band playing.  People were lined up for drinks at the bar at least 4 deep, they were dancing to the beat before the band, congregating in groups.  What the hell?  Total silence.  I looked up, saw a banner hanging from the ceiling...it was a convention for ASL speakers...if you can call them speakers. It was like time slowed down as we made our way through the crowd.  No one was speaking but everyone was conversing. Nothing was out of the ordinary but everything was different.

I'm deaf...medically, legally, functionally, and whatever else you want to call it.  I'm deaf and I have been for over two decades.  But I'm deaf with a lower case d and that's different than being Deaf.

In the good old U S of A we have something known as Deaf culture.  I'm not a part of that.  To be considered a member of that culture, one's primary means of communication is American Sign Language (ASL).  The nature of my hearing loss allows me to function in society with the help of hearing aids and because of those hearing aids, I haven't had to rely on ASL.  I only know one person, my cousin Kelly, who is fluent in ASL (aside from a few deaf students) so at this point I haven't bothered to learn much of it and instead I've struggled to hold onto whatever residual hearing I have.

My hearing is, however, progressive, which means that it gets worse over time.  When I first learned this, I didn't really have a clue what it meant and I ignored it.  But as time passed, and the numbers changed, the power of the aids increased, I realized that my hearing days are numbered.

I began learning ASL in 2003.  My first class was through the Deaf Action Center in Dallas, Texas.  I spent only a brief six weeks there learning the basic vocabulary and grammatical structures of a foreign language sitting next to my husband (who learned it much faster than me).  I walked away with a certificate but really knowing very little and I upgraded my hearing instruments and went on my way.

When my daughter was born, my speech discrepancy levels dropped considerably and Blake and I chose to teach our baby signs.  She was an early language developer, speaking around 100 words by her first birthday, complete sentences by 15 months, but she learned dozens of signs and at almost 3 years old now, still uses several of them.

I recently decided that learning ALS is not an option for me but a must.  At some point in my life, the spoken word will be obsolete and I will have to find another way to communicate.  And I'm terrified!  Can I learn this language?  No doubt! Can I learn it quickly?  No doubt!  Will the people I love learn it?  I doubt it.  How will I communicate with them?  How will I grocery shop, order a pizza, buy a car?  How will I have a teacher conference with my daugther's teachers?  How will I explain to the girl at the mall who wants to help me that I can't understand her?  Do I wear a t-shirt that says "I'm Deaf!" What happens when I get pulled over for speeding and the cop can't communicate with me? How will I hold a job and provide for my family? How do I live a normal life?  I already rely on speech reading so much...I'm terrified of the future!

I recently passed my first test to become certified to teach the deaf and hard of hearing in Texas.  Before I can receive my certification, I have to become fluent in ASL.  So that's what I'm doing.  I've picked up my studies again and hope to take the test next summer.  Once I pass that test, I will be able to teach the deaf and you don't have to hear to teach the Deaf!  By learning ASL, I will also open the doors to another culture and become a part of it myself.

Not only will I be deaf, I'll be Deaf.  And maybe the next time I happen onto that bar in Austin I'll be invited as a guest rather than a crasher wondering what the eerie silence is all about.

Allegrophobia

Okay, so there isn't really a clinical term out there for the fear of being late, but somebody with a pretty funny sense of humor dubbed it Allegrophobia at some point in time.  I have always been annoyed by late arrivals and the idea of arriving late to an appointment, work, or class is strong enough to keep me up all night.

This fear is compounded by the fact that I cannot hear an alarm clock.  So how is it that the deaf and hard of hearing ever get anywhere on time in the wee hours of the morning?  For me, it was a struggle for many years.  As far back as high school before I even realized that my hearing loss was a problem, I had trouble waking up on time.  I had a little bedside alarm that would sound off bright and early waking up everyone in the house except for me.  Apparently this was a problem for my dad.  He's not the kind of guy that just runs out and buys gifts to show you he cares, but I have a foggy, just rudely aroused from an awesome dream, kind of memory of my dad, sitting on the edge of my bed bouncing it up and down a little telling me to rise and shine.  Then I heard it, the terrible clanging bang of the gift he was bringing me.

He handed me a shiny brass alarm clock with two bells on the top.  That thing was loud enough to wake the neighbors.  I didn't know it at the time, but my old alarm clock was waking him up every morning while I kept on snoozing.  He had run down to the drug store and found me a clock that I could hear, a clock so annoying I would jolt out of bed like somebody hit me with a cattle prod.

I carried the golden dreamslayer with me for years until somewhere along the way it was lost, or broken, or most likely thrown against a wall or beat to death with my own bare fists.  It's hard to sleep at night when you know you have to be somewhere the next morning by a specific time.  Marrying my husband was a blessing because he was there to wake me up and for awhile I didn't have to stress about it.  My dog, Cotton (so named because she looks like a dirty old cotton bowl that's sprouted out of the red Texas sand where I grew up) is pretty good about waking me up too.  She doesn't like the sound of the alarm clock.

But eventually, my husband had places to be much earlier than I did and Cotton is not always reliable.  For awhile I used a dual alarm clock that had double alarms set five minutes apart.  If I didn't hear them, Cotton would wake me up just to get me to turn them off.  I also got pretty good at just knowing; most of the time I would think to myself, I need to be up by 7 and I would just automatically wake up at 7.  Not the trustiest way of doing things yet it usually worked. But eventually a time came when that simply wasn't enough.

I had just given birth to Lillian and paid a visit to my audiologist to buy my second set of Oticon hearing aids.  I was discussing my problems about hearing the baby monitor with her when she introduced me to the Sonic Alert System.  I can't believe I didn't discover this sooner.

It's an alarm clock that sounds off at 113 decibels and not only that, it will shake the whole bed until you turn it off.  And it acts as a receiver for other products including the baby monitor, door bell, fire alarm, and stove timer.  It can also be connected to any regular bedside lamp that will flash until you hit the shut-the-hell up button.  She used my insurance to pay for the whole system.  I have flashing strobe lights that plug into outlets throughout my house, the super clock, a vibrating bed, a flashing lamp, and a noise receiver in my daughter's room.  If the doorbell rings, the baby cries, or the alarm goes off, so do the strobes, shakers, and lamps.  And finally, I can rest in peace.