Month: July 2012

Why don’t you listen? Why do you talk that way?

I can’t begin to tell you how often I’ve heard that question from teachers, family, acquaintances, group members, and classmates – to name a few.

I can honestly say that I’ve made a life-long career out of listening until I’m exhausted from it.  My left ear is dead, kaput, beyond redemption, not even good for a CI. I’ve probably been hearing impaired on the right for that same period of time, but no one knew until I was an adult. The hearing in my “good” (seriously impaired) ear is fading.  Yes, that’s me, collapsed after a day of trying to listen to all the rest of you.  At the very least, get me a cup of cold water, please.

It wasn’t until I went digital about 8 years ago that I actually spent much quality time with hearing aids and I wasn’t fitted for one until around 1982 anyway. My newest, the awesome Phonak Naida S is the first one I forget I’m wearing (although I do get a sore ear from the interaction of glasses and BTE aid at times). Even then,using the best technology money can buy, my brain stopped processing certain signals from lack of use. And I still get agonizing “sound headaches” that are only cured by taking off the aid.

Why don’t I listen?  Jeeze Louise.  In a noisy restaurant I can hear the low tones in the kitchen better than the person sitting across from me.  Ditto for  noisy situations where local Bar Association meetings are at restaurants or pubs. When my grandkids do cartwheels through the house (literally) and shake metal tubs full of Ninjago  I not only don’t want a hearing aid in my ear, I want to scream, since abrupt noises are actually painful to my Meniere’s-affected hearing. And then there’s the strange things I can’t explain.  In the car when my grandson speaks it is as if James Earl Jones is projecting into my hearing aid.  If I take it out then I might not hear a siren.  I don’t know how to explain it.

When I go from a loud environment to a quiet one I’m so focused on projecting my voice over the noise that I continue to do so unless someone tells me I’m talking too loud.  I recently got my *ss chewed by someone who was irate over being able to hear me inside the house while I was on the phone outside.  It didn’t matter that it was like a 3-ring circus in there and  I fled outside to take  a phone call.  (sigh)

My roommate tells me that she never knows whether I’m going to be talking too loud, not loud enough or just right.  I feel as if I’m reliving the tale of Goldilocks and the Three Bears in terms of voicing. How do you tell if you are too loud if you can’t hear yourself that well?  It’s summer. Fans are on.  The AC is on. It is like being surrounded by a wall of machine noise.  How can anyone hear anything in all that?  Egads!  Not to mention that when my hearing was better I was taught to project my voice to an entire theatre. In fact, I was taught to speak in those “round pear-shaped tones” voice teachers like so much.

In meetings where I have interpreters I do my own voicing because I can.  Other attendees can’t understand why I need terps since I can talk.  The old “deaf and dumb” adage is alive and well.  In fact, it was suggested  I sit centrally and listen to people. Right, if I could do that I wouldn’t need terps, would I?  And there is an assumption that each Hard of Hearing (HoH) person is exactly like every other HoH person.  In fact, one person told me it was not like I was deaf from old age.  Really?  Someone who is old and deaf is different solely because of age?  People who are fully hearing really don’t get it. Recently a person went off on one of my interpreters for being “distracting.” Mind you, this person didn’t talk to me and instead started a fight with my terp during a break.  It ended up being a real brouhaha after I found out what was going on and got in the middle of the issue. Perhaps I should be less radical, but I’m unsympathetic to those who have two functional eyes and ears who can understand what is happening while I rely on terps.  No one speaking was anywhere near my terps or me . Close your eyes or look elsewhere.

If no one knows I can’t hear they presume I hear. Then I might be considered an airhead or inattentive, but not defective.  I can’t wait to see what happens if I am able to raise $20,000 to get a hearing ear dog in a couple of years (the time it takes to train one).

No wonder I look longingly at the Deaf Community and think … if only I were completely fluent in sign.  The expectations of the hearing can be totally overwhelming.

We, the  HoH and oral deaf are listening as hard as we can.  We’re working extremely hard to get the information hearing people do. You know, it could be you someday who is hard of hearing and wondering why everyone is telling you to listen up and stop talking so loud.

Signing aids

Last Thursday I took my iPad to the ASL Meetup for the newest signers who know little but some very slow finger spelling.  The three of them huddled around the iPad looking at ASL 101 by Everyday ASL and then tried out basic signs with each other.  I’ve also got ASL Zoo, ASL Pro, ASL Mini Dictionary and Idioms 1&2 on the iPad, but these folks need to learn basics so they can ask and answer simple questions or ask for a repeat of the sign.  The more advanced signers just signed away while the neophytes were learning.

I also have ASL Dictionary 4800 signs which would be my fav if I didn’t have to cache each mini-video – and if I haven’t and I don’t have access to an Internet connection then the words not cached don’t run.

One of the new signers emailed me for the URL of the website they were using.  Um, sorry, these are apps designed for tablets, iPads, and smart phones.  However, there are websites people can visit.  One of my friends loves (ASL University) another swears by, still another by and there are a plethora of ASL tutorials on youtube. I prefer videos to books because books are flat and one dimensional, whereas ASL is a 3D language.

DVDs work on computers.  App work on smart phones and tablets such as the iPad.  Websites need Internet connectivity and at least one of them doesn’t work well with the iPad. I prefer to the apps or the DVDs.

Classes are probably best, but if access to a class is not possible then websites or apps are the next best thing.  And signing with others who are learning the language – and then with members of the Deaf community.  You’d be surprised how many of the oral deaf struggle with sign.

Although a lot of people lip read, the reality is that lip-reading isn’t as accurate as learning Signed Exact English (SEE) or American Sign Language (ASL). I’m lucky to get half of the words if I lip read without the ability to get any of the sound from the person speaking.  So I fall more and more into the use of ASL.

I continue to feel that we should be teaching ASL as a second language in schools from early on. We’re living long enough that half of our elders are deaf in their later years.  And for those with the misfortune to also go blind, ASL is all they’ve got.

Another important post from Shanna Groves regarding hearing loss with the added issue of Auditory Dyslexia

Lipreading Mom

By Debra L. Butterfield / Guest Blogger

Marezie dotesan dozey dotesan liddle lamzie divy.

When you first learn a new language it looks and sounds like the above gobbledygook. But stop and imagine for a moment that you aren’t learning a new language. That what your friend is saying to you she is saying in your own language. Welcome to my world.

Several years ago, a book I reviewed for work helped me recognize my problem and attach a name to it. Doctors have never officially diagnosed me, but I battle auditory dyslexia.

Most often when people hear the word “dyslexia,” they think of children turning letters around as they attempt to read or write. There are many subtypes of dyslexia, and they do not all have a visual basis. In auditory dyslexia, a person struggles to distinguish and process certain sounds. In layman’s terms, sounds run together and…

View original post 442 more words

Begins with a dream

Just for today: I will remember that all things begin with a dream. Today, I will allow myself to make my dreams come true*.

Why is it that we can’t get out of our own way to make dreams come true? What about that weight we want to lose? The pledge we made to ourselves to work out? Saving for that trip to Antigua or Ireland? That college or graduate degree we think will fix our problems finding work?

Many of us grew up in homes where we were not encouraged to dream. In fact, many of us grew up in homes where survival was on the top of the list. Without taking the inventory of anyone’s parents, those who went through the Depression or rationing in World War II or any other number of life-altering situations were focused on staying alive and keeping what they had.  They did the best they could with what they had.  Actualization was not a part of their world.  Food on the table, a roof over your head, and enough clothing to be warm and dry and socially acceptable was enough. Keep your nose to the grindstone, your shoulder to the wheel.

Even families that did well often had the belief that there was no dream, just a hardscrabble existence. It became a part of our inner voice as children and we carried it forward into adult life. Even if there was no drug or alcohol abuse or other form of dysfunction (abuse, neglect, mental illness) lots of us grew up with more than a little fear of loss, fear of failure, fear of not being good enough.

It’s hard to dream when you think you’re not good enough, you’ll never make it if you do try to follow a dream, and the pain inside sends you in directions that thwart success. If we do dream, the dreams are wildly unattainable without many intermediate steps and those steps take time and effort. Nothing worth having comes easy and if you don’t have a dream to follow and hope you can achieve it, those steps are more like roadblocks. We look at the outsides of others, think they have life handed to them on a silver platter and then compare that to our insides and we stop taking those baby and intermediate steps because we believe that we just don’t measure up.

Our self-limiting beliefs hold us back. We never try to begin with or we quit after one or two steps (think of being on a diet for two days, blowing it and saying, “I’ll never be able to do this!” and just quitting and gaining another 20 pounds – or more). We then slither along on our bellies like snakes and complain about the view. Damn grass is too high.  Can’t see anything. And then there’s the birds overhead looking for a juicy snake.  Life isn’t fair.

And how do I know this? Um, yeah, that’s my story.  The deaf kid, the one with ADD/ADHD, learning disabilities (dyslexia, dyscalculia) – how can you expect to make it?  And then I look back and see that I did make it, despite myself.  Only I need to keep on keeping on.  And sometimes I just don’t do that.  A pity pot is a very uncomfortable place to be.

Since all things begin with a dream, what is yours and will you allow it to become true? If so, what are you willing to let go of (negative beliefs) to realize that dream?

* Copyright © 1991-2012 by Narcotics Anonymous World Services, Inc. All Rights Reserved

Joey Needs a Kidney

Well, this is something new for this blog.

The email letters below are from a real life friend of mine, Lauren. Her husband, Joey, is a doctor who has dedicated his life to serving the needy.

I’ve known Lauren about a year and she’s a great gal. Since I’ve met her I’ve been aware that her dear husband, the love of her life, will be in dire straits (as well all of his impoverished patients) if he is unable to get a kidney transplant. He has been floating down that river of Denial and thinking more folks than he need the help – because he is one of those caregiver types.

When I got this from Lauren in my email I pondered how best to get it out to a vast number of people who might get it out to a vast number of people. So here it is. Maybe there is a young, vital person out there who is willing to give the gift of life to someone who gives the gift of life to others in need – ya think?

July 15, 2012 (so this doesn’t go around the Internet forever) – From Lauren: Hello everyone…I’m writing tonight because my husband is in a medical crisis and is in need of a lifesaving kidney transplant. This is not a spam mail, this is not a joke…THIS IS FOR REAL!

If you or anyone you know might be able to help Joey find a kidney, please contact me as soon as possible.

This is where a private email/phone would be. I’d request you contact and I’ll pass information on to Lauren and Joey. In fact, if anyone wants to call, my work number is on the website. If anyone gets hammered with spam or bogus phone calls, let it be me. Back to Lauren’s letter now…

The potential donor has to have an O blood type, either O+ or O-. Feel free to forward this message to others…Joey needs a kidney by end of this year 2012.

Thanks, in advance, for your consideration, help and just getting the word out to as many people as possible. Lauren

Here is Joey’s plea:

Hi. My name is Joey….I know—a guy named Joey…but that is what my parents desired and I went with it. The only problem is I think my kidneys may be rebelling against my name—-why do I think this is you ask?—Well they are shutting down—closing shop and basically leaving me. Oh I guess I could believe all that medical jargon that I was affected by too much contrast dye—but why go there—The bottom line is…….I NEED A KIDNEY….

But who am I and why do I deserve such a magnanimous gift????
Well I help people. People who really need help—the underserved….I was a public Health Scholarship recipient for medical school and spent my payback in the inner city areas of Chicago. Spent 12 years there I loved it so much—my entire career has been taking care of those who really need it but had no access to good health care. And boy, Do I give good care—–as good as in Boston.

So I would like to keep on giving back…..but I need help…..

Not enough??? YOU want to know more??—well—OK—I also do bodybuilding and my wife does it as well—she has now reached the rank of #5 amateur heavyweight in the country—so you know I have to behave or else one good whack—-and she could send me across Boston Harbor…..Seriously—maybe just Cape Cod—Nah—she is too nice to hit me—But we love each other madly and I want to be around with her for many years to come. We met through a matchmaker—–so I figure if a wonderful wife of 9 years, then why not a kidney.

I try to stay happy. My other field was improvisational comedy. Yup..Studied at Second City (Not good enough for First) and I used to have a group called Rice Pudding. Jimmy Carrane was our director.We really congealed and sold the house out constantly. I love being before a live audience and making people laugh—guess that is why I am such a cut up in the operating room.

Now the business stuff—-I drink on occasion, have never smoked or even tried a non-prescribed drug. I eat healthy and exercise daily and have a trainer—-still can Bench Press 300 lbs and have biceps close to the 20”mark—–Also do cardio daily

I am not kidding you when I tell you how much fear I have about this—the operation—the drugs—the risk of infection, cancer, and other nasties.

But to be able to spend more time with Lauren (my wife) and Preston (my cat—sleeps with me with his tush in my armpit and his head on my hand every night. He is my buddy) and to care for the people I love to take care of would be very precious to me. I hope you can help.

So any of my blog followers who want to pass this on, please do so. I’d like to see Joey get his kidney and continued to take care of the poor folks who can’t afford to get high end medical care in this country. We need more people like Joey.

Out of the woodwork

People are starting to emerge from the woodwork at my interpreted meetings. First they tell me how beautiful the motions by the interpreters are, how ASL is like dancing hands. I smile and say, “Yes, but it is also a language I speak.” Over time more and more people come up to me.

Last night a woman said all the things about the beauty of the language (and it is beautiful), and then she told me about her hearing loss. And how she forgot her hearing aid. And if only she understood my terps. So I gave her my card and told her to get in touch with me over my cell phone and we’d get together and I’d teach her the basics and introduce her to Ron, who teaches 12 weeks for $50 and how good he is, how we could visit with my friend, Emily, who studied to be an interpreter and who wants to do only 12 step groups, and how to find free sources to learn and socialize using sign. Then I mentioned how I have a terped ACoA meeting – she’s going to come to learn the language – and the terped open AA meeting on Friday right next door to where we were last night. I think she’s going to be my “new best friend” for awhile. 🙂

I swear that the more times people are exposed to terps and the HoH and deaf the more interested they are. At first it was an oddity – when I missed one week because I was in an ASL immersion program everyone in the Al-Anon group missed me and the terps. One fellow wondered why I could speak so well and I explained to him I have some residual hearing and I “voice” well because I could hear fully until I was 18 months old, how I read lips and use what sound I can gather to understand one-on-one conversations and how sometimes in groups like our Al-Anon group some voices are too soft and people are too far away for me to lip read. We chatted a bit about how critical it was to NEVER hit a child in the head and how I was the poster child for what could happen as a result of a head injury. He thanked me for sharing that information with him.

I now speak regularly to folks with hearing loss, tinnitus, Meniere’s syndrome, all sorts of things. They’re coming out of the woodwork where it is safe to do so. Apparently, I am making it safe for others to speak up. I’m thrilled about that. So many of the HoH suffer in silence, literally in silence and isolation.

It makes even more of a point of something I once said (and got blowback on by another poster) on CrimeDime. It is my opinion that we would be well advised to teach either ASL or Signed Exact English from grade school on – every day in one class or the other. Why? Because as we age – and now even as we grow up – we lose hearing. So many people have hearing problems these days – we live in a noisy world and even kids have hearing loss from headphones. So why not have a tradition of both a spoken language and a signed language. Granted, if you’ve no arms or hands that would be tough, but that is an exception to the rule. If one is blind there is tactile sign language.

If everyone had a basic knowledge of sign we’d see people signing in noisy environments and across distances where you’d rather not shout. If everyone had a basic knowledge of sign we’d see less concern about the problems of wearing hearing aids and a knowledge that any of us could need augmentation at any time. Sign is not a replacement for being able to hear the car that is about to hit you, the lovely sounds of a choir or the cry of a child in danger. Sign language expands our world. Frankly, most of us will never speak French or German (regularly taught in schools across America) but we would actually use ASL or SEE if we were taught it.

And last night I was so happy to see the terps. I’d gone through a court hearing that day with no terps or CART and though I did okay, seeing the terps last night I just wanted to run up and hug both of them because it was a relief to see someone I could understand and not have to panic that I’m missing something. They both reminded me they are not legal terps (which I know), but I missed having a terp soooo bad in court. Yes, I functioned, but I might have flown higher and done better with a terp. They are, each and every one of them, precious people to me. Next time I swear I will bring them cold drinks and cupcakes or something to let them know how much I value them.

This was such an excellent blog I felt it was better to reblog it than come up with my own. Without further adieu, here’s information on the four myths of hearing loss by the Say What Club.

Independence Day

Independence day reminds me of the day I left home for college. The day my daughter left for a life of her own with her new family. The day my Mother died and I had to independently parent myself, asking WWMD (What Would Mom Do?).

On July 4th we celebrate a day when our country made a decision to become independent of it’s creators. Like most moves from interdependence or dependence, it wasn’t easy for either side and there was more than a little fear, conflict and general blood, sweat and tears.

I’d like to think that we’re all the better for it.

She says it all.

Diana Bee Dash Bee Tries Really Hard

On an unseasonably warm day in February, 1989, my life turned upside down.

I was 11 years old. My mother was six months pregnant with twins, and for three days had been having horrible leg cramps, which her doctor had told her was from the babies’ pressing on a nerve. He said it would pass in time and cleared her for normal activity. I went outside that afternoon with my mother – newly approved for light yard work – to clear some soggy leaves from around the hedges that bordered our driveway. It was so warm we wore only light shirts and jeans and could smell the soil and wet leaves as the last spots of snow melted from around the bases of the trees. We agreed it was a great day to be alive.

After we’d been outside for an hour or so, we were surprised to see my…

View original post 2,737 more words