Working Toward Living a Spontaneous Life

 

Volunteering for hearing loss causes, attending various hard of hearing support groups and meetings plus going to conventions put me in touch with some awesome people. I learn things too!   At the SayWhatClub convention in Boise this last August I had the privilege of listening to their keynote speaker (with the help of CART and the loop) Richard Pimentel.  How fortunate I am to get around like this and then be able to write about it, sharing it with you all.  I hope this encourages you to be a part of your hearing loss community too.  

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Richard Pimentel was the keynote speaker for the 2016 SWC Boise, ID Convention. The convention crew was honored to have him speak and attendees were excited, especially after watching the movie Music Within depicting his life and his work toward the American’s with Disabilities Act (ADA). So much of what he said I didn’t want to paraphrase so where the text appears in blue, it’s directly quoted from his speech.

A short bio of Richard’s life can be found on the website where he works:

“Richard Pimentel was pronounced dead at birth in the delivery room. In a miraculous turn of events, he lived. His mother, who had experienced three miscarriages before his birth, left him in an orphanage, unable to come to terms with his existence. After his father’s death, he was raised by his impoverished grandmother and deemed “retarded” by a school guidance counselor. He never spoke a word until age six.
After his mother abandoned him again for a new boyfriend, Richard was left homeless and roamed from friend’s homes to his father’s old workplace, a strip bar. He lived and slept in the dressing room. During these hard times, he managed to win two national high school speech championships and was offered a college scholarship by College Bowl founder, Dr. Ben Padrow. Richard arrived on campus only to hear Dr. Padrow tell him to come back when he had “something to say.”
Richard followed Dr. Padrow’s advice and quit school. Soon after he was drafted to Vietnam, where he survived a volunteer suicide mission and became an acknowledged war hero. During his brief celebration, a stray bomb exploded in his bunker and ravaged his hearing. Not only did Richard lose his hearing, he developed tinnitus, a constant ringing in the ears. The government dismissed his dreams of college and public speaking, insisting his fate was one of insanity and rage due to his condition.”
Richard started his speech with humor, talking about his past and growing up in Portland, Oregon…. Being poor enough to be on the “relief” program (before food stamps) and getting the worst peanut butter ever which came in a can and had to be shaken with a paint shaker to be mixed. There was no money for a college education so he took up a government program called Vietnam, were a college education could be obtained after government service.
Several times we laughed as he talked about his service years leading up to a tense moment when his small unit was surrounded by the enemy on a suicide mission. Decisions had to made and they made it back to camp w

here they were holding funeral services for the 5 men who were expected to die.
The men were awarded a night in the beer bunker for their survival. Ten hours later a rocket was exploded on top of the beer bunker while they were still in there and the bunker imploded. “What did the implosion do? Well, the worst part of the bunker, where all the air came together, air at high velocity in a confined space, it literally blew the eyes out of the person who was there. All the rest of us got traumatic brain injuries. Even death.” It caused him to lose 70% of his hearing, losing the high frequencies, a classic ski slope loss.
After the explosion, he had to learn to walk, talk and even feed himself again-which he said he mastered almost immediately. Once he was getting around again, he wanted to go to college and the government refused.
You know what the rehab person told me? He said: Well, I can’t spend government money on sending you to college.

I said, why not?

He said, because you are deaf!

I said, what? Those counselors have no sense of humor. I said, I’m not deaf, you moron. You are talking to me.

He said, no, no, you are not totally deaf. If you were totally deaf, you’d be fine. I’d just send you to Gallaudet and make a good deaf person out of you. But you lost over half your hearing. You don’t have any hearing in the upper register. You got good hearing in the lower register. So you know what you can’t hear?

I said, what can’t I hear?

Well, you can’t hear the beginning and ends of all consonants. They are all going to sound the same to you. Your T’s and your Z’s and your V’s, they will all sound the same. He said, you know what you hear?

I said, what?

Your vowels. You hear your vowels: A, E, I, O, ooh. But not your Y’s, not even sometimes.

I said, what do I do? Do I learn Sign Language?

He said, you don’t want to learn Sign Language. The only people who do Sign Language are the deaf, and they don’t want to talk to you!

I said, well, what do I do?

Well, if you don’t hear consonants but you hear vowels, you only have two choices in your life  either learn to read lips or you move to Hawaii!”
The counselor went to explain how tinnitus would keep him from learning as well and possibly drive him crazy. His hearing loss and tinnitus would make him angry, violent and foul mouthed.
Moving on, the counselor asked him what he wanted to do in life and Richard said he wanted to be a public speaker. The counselor told him it wasn’t possible and pulled out a big book of disabilities. The book listed careers people could do with their disability, under deaf was listed “shoemaker”. The counselor moved on to traumatic brain injury and pointed the list of options out to Richard and asked do you see “professional speaker” listed? No? Then you can’t do it.
Richard decided to prove him wrong. He learned to read lips and went to college anyway. There he met Art Honeyman who had severe cerebral palsy. Most people couldn’t understand Art but Richard understood him perfectly. It turned out Arts speech lined up with Richard’s audiogram perfectly. Art had high IQ and Richard often translated for him. Then Richard wouldn’t be able to understand the person talking to them so Art would translate for him (Art could hear). “We were the strangest pair you ever saw in your life!”
Art was in wheelchair and the majority of public places were inaccessible in 1970. As an example, the college dorms and bathrooms were only accessible if Richard or someone else carried Art over their shoulder. They became good friends.
On his birthday in 1972, Art called him at 3 am to go out and celebrate with pancakes. He needed Richard to help him dress and carry him and his wheelchair down 3 flights of stairs, then push him 8 blocks to the restaurant where he had to pull him more steps to get inside. Richard figured why not and did it.
The waitress had come up and never seen anyone like Art before. She said the cruelest thing I ever heard in my life, cruelest thing I have ever heard in my life. She went to Art and she said, you are the ugliest thing I have ever seen in my life. Do you expect me to bring you food? And I don’t know how you are going to eat it, like some pig in a trough. You are going to make us all sick. So I won’t serve you. Get out. She said, I thought people like you are supposed to die at birth.
I looked at my friend, Art. He’s my best friend. What’s he going to do? How’s he going to react? Is this going to ruin his life? Remember, he’s a genius. But he’s better than a genius  he’s an evil genius! And Art turned to me, and I will tell you exactly what he said. He looked at me and said, Richard, why is she talking to you that way?! You don’t look any worse than you normally look!
Lord knows, I wanted to say it to him before, but he was my friend. I said, she’s not talking to me, she’s talking to you!

He said, there’s only two of us; how can you be sure?

I said, I think she’s trying to take me home and trying to get rid of you.

So we got into this big argument about who she wanted to date, and that made her really mad. You can either leave, she said, or I can call the police.

And I said, call ’em.

And they came. And the police said, you can either leave or you can go to jail. And Art said the words that changed my life: He said, I want to go to jail. Then he said, and Richard wants to go to jail too.

I said, no! I don’t want to go to jail. I want to get a job with a big American company.
I could have left. Art wouldn’t have blamed me. I could have just got up and said, I am not going to go, and they would have taken Art to jail. But a few things occurred to me.

First intellectual reason was, if they didn’t want me to commit civil disobedience, why then did they require me to read Thoreau?

The second intellectual reason: I didn’t go to Vietnam to protect people I don’t know to come back to find the people I care about have no rights.

The third one wasn’t intellectual, okay? How the hell are they going to fingerprint Art? This I got to see. This will be worth going to jail for.
They were jailed and appeared before the judge who found them guilty under the “Ugly Law.” Portland Oregon had an Ugly Law. Richard realized he was living in a time of disability apartheid, this seven years after the Civil Rights were enacted. Art and Richard continued going to places there weren’t welcomed and were arrested again and again.
Why? Because we believed since they were enforcing an absolutely unjust and unfair law, that if we made them do it over and over again, eventually they would have to change the law out of embarrassment. I started a mission in 1972 that ended 20 years later with the passage and eventual enforcement of the Americans with Disabilities Act. It was a tough road.
What I want to share with you is this. You know you are going to look at a lot of the ADA stuff, and you are going to see — oh, you will see Justin Dart and all of these people with wheelchairs, you are going to see people climbing up the steps of the Capitol. You are going to see such dramatic things, and you know what you might believe? You might believe by looking at that the only people who were involved in this were folks in wheelchairs, and the only issue they cared about was bathrooms, and stairs, and doors and ramps. But I want you to know, there were a lot of other people involved in the movement. People who were deaf and had been deaf for generations. And then they had people like me, the recently hard of hearing. I remember when I first started, trying to become a leader in the disability community, I was criticized for not being disabled enough. I was criticized for not being deaf enough. I was criticized for not doing Sign Language.
Richard went to share his experiences in helping people get accommodations, Deaf and otherwise. While standing up for a Deaf employee who’s supervisor wouldn’t allow her an interpreter (she read lips too well) during a disability presentation Richard was giving at a big company earned him the respect of Deaf culture.
When the disability community first started with ADA, it was a very physical disability community. Sensory was not a big deal, except for blind. They didn’t think that retardation should be included. They didn’t think that mental illness should be included, or that learning disabilities should be included. And it was the deaf community that said, we need inclusiveness.

I want you to know right up there with all the folks getting all the photography going up the steps, there were a number of folks who were Deaf  and folks like me, only hearingimpaired  who helped put the ADA together. You folks are very much a part of that.

The deaf community, along with all the other communities in the disability field, helped put the rights together. And we didn’t do this together so we would have lawsuits. You know what we did ADA for? The simplest thing in the world. We did it so that people with disabilities could have a spontaneous life. You don’t have to call ahead to know that you can get somewhere, or that someone will be able to talk to you, or that you will have another way to communicate available to you. We want what so many people without disabilities take for granted the ability to have a spontaneous life. This really is all it comes down to. And we ended up in 1990 passing that.

Look for more of Richard’s work in a program he’s working on for parents of children with disabilities. He wants them to know a disability does not define anyone and that they too can be successful in today‘s world. He will start in the Boise area, where he lives, and wants to take it nationwide.

Who you are is important. Every decision that we make about anyone should not be based on what they have but who they are. Disability is not a 4 letter word. Recognizing a disability is important so everyone knows how to advocate for themselves. Tell people in a kind, positive and creative way what you need.

His final words to us was for children with disabilities but I believe it applies to us all:

The shortest distance between where a young person with a disability is and where they want to be is a road that is illuminated by their own dreams, not by the dreams that we have for them, no matter how much we know, no matter how much we care, and no matter how much we love them. Let us enable them to find their own dreams, their own music, and their own definition of success. That’s the best advice that I could give anyone who cares about someone with a disability. We didn’t work all of these years  and I’m old now  to help ourselves. We worked to help this new generation of young people with disabilities to live a spontaneous life.

He received a standing ovation from our attendees.

Auditory Fatigue

All three hearing loss organizations in the US have their good points. I love my local HLAA chapter for its face to face meetings. A few weeks ago they had Susan Naidu, an audiologist at the University of Utah talk about auditory fatigue, also called listener fatigue and cognitive energy fatigue. She works with patients in the clinic, trains graduate students to become audiologists and her favorite thing to do is aural rehabilitation therapy. She was happy to talk about auditory fatigue because “it’s a very real phenomenon, it’s a real condition but it’s not discussed much and not researched enough.” It isn’t clinically recognized but many professionals are familiar with it.

tired again

Auditory fatigue doesn’t mean people are dumb because they can’t listen, it’s the “energy it takes to fulfill the complexity of listening because listening requires more to go on in your brain in order to comprehend what you’re listening to.” Ian Noon wrote about this in his piece on the Limping Chicken out of the United Kingdom only he called it concentration fatigue. Noon says: “I went to a great conference today. It was riveting and I was hooked on pretty much every word. And then I got home and collapsed on the sofa. I’m not just tired, I’m shattered. I’ve had to turn my ears off to rest in silence and my eyes are burning. I’ve also had about 3 cups of tea just to write this paragraph.”

Susan introduced us to Kathleen Fuller’s work on hearing loss and cognitive energy. Kathleen asks: “How can audiologists better understand and find ways to counteract the factors underlying why listeners may decide to quit participating in activities because it takes too much effort to listen? How can audiologists help listeners to strategically deploy their available cognitive capacity in situations where it is hard to listen? How can audiologists prevent listeners from avoiding situations and withdrawing from social participation because it is too hard to listen?… It’s said we hear with our ears and listen with our brain now we add when and how much effort we expend during listening in everyday life depends on our motivation to achieve goals and attain rewards of personal and/or social value.”

Listening takes effort. It’s not only being able to hear but being able to pull all the components together to communicate properly. It’s being able to understand language, generating an appropriate response and being able to keep it going back and forth to make a conversation. Usually people aren’t just listening either, they are multitasking; washing the dishes, walking, watching TV, etc.

For those with hearing loss it takes even more effort. Not only are they taking in the above but they are trying to decode the message. Add in being visually aware to compensate such as speechreading and body language. The mind races to fill in blank spots in words and conversations which involves guess work. The mental process is “I’m not hearing well enough. I have to do something and physically push the brain to listen better.” After an hour (or less) these people are really tired and experience discomfort, pain and numbness.

 

What makes listening even more difficult? Noise, it’s the number one complaint for those coming into Susan’s clinic. Trying to filter and ignore noise makes listening harder for hearing people and difficult for the hard of hearing. Even with modern technology in hearing aids such as directional microphones and noise reduction programs noise remains a problem. Restaurants are an example, bars and traffic. (Hearing in cars has never been easy!)

What other things become hard with this much cognitive energy being spent? Remembering things get harder because with so much going on in the mind already, it’s hard to find a place to stash the information. People may have a hard time remembering names because there’s more focus to understand what’s being said. While in a meeting they can be so intent on understanding the words as they are being said that half the meeting information is forgotten.

Because of the intense concentration, hard of hearing employees end up taking more days off. The mental stress affects their bodies causing illness among some. Or to balance out, they stay home evenings and weekends to recuperate, avoiding social activity. For those who don’t work, many tend to withdraw because it’s too much work going to that party, the play or lecture. It’s easier to stay home and watch TV with captions. It’s not worth it in the end, the struggle is too much.

tired

Mohan Matthen is studying why some hard of hearing people are more successful at socializing than others. He thinks it might be a pleasure factor. When audiologists diagnose hearing loss and fit people with hearing aids they tend to talk about adverse conditions. What if they talked about positive things instead? If a person can exhibit more pleasure in the role of listening they might be more relaxed and less stressed out. Once it becomes pleasurable their listening effort seems to be reduced. No matter how hard it seems, seek listening enjoyment. Make it fun and shoot for positive because the reward will be “I will understand.”

So what helps combat this fatigue?

Advocating helps a great deal. What do you need to make this meeting better? CART (live captioning)? Sitting closer to the presenter? Assistive listening devices? One speaker at a time? Don’t talk while multitasking? There’s a lot to be said for planning ahead as well. Think about the environment, talk to the event coordinators, find out if the venue has assistive listening devices such as the CaptiView at theaters or live captioned performances. If you’re going to a lecture/workshop/convention, talk to those in charge well in advance to see what might be set. Some people report learning speechreading has helped lighten their fatigue. Visiting with people a few at time instead of large groups. Limit interruptions, have a quiet room to talk to family members at large gatherings. Ask for background noises (music or TV) to be turned down or off. Go outside to eat because break rooms usually have lousy acoustics. Take hearing breaks and read instead of watching TV. Arrange for hand signals when conversation needs to be slowed down or when wanting someone to talk louder. Find out what works for you and advocate for yourself. It’s okay to experiment with it all.

The presenter validated what most of feel almost daily, I’m so glad I attended.  I don’t shy away from social situations often, I even attend noisy ones without much thought although occasionally I refuse to go because I’m already tired. If I’m that tired I’ve learned from experience I won’t have the energy needed to make the best of the situation staying home instead. Knowing when not to venture out has saved me a few meltdowns.

I also know when to get CART, when ALDs will work, or not, and it’s even helped to know I’ll fail from time to time. I now analyze my bad times to find ways to make it better next time. 

Advocating for myself has made a tremendous difference in my social pleasure. I tell people up front I lipread, they need to face me or get my attention before talking. Most people are good and will comply and some very interesting conversations have followed.

More links on auditory fatigue.

Studies done on prolonged exposure to audio stimulus (for those who want to go deeper). This phenomenon occurs after an extended period of time listening to speech and happens to hearing people as well. Hearing people have more problems than expected which might be related to an auditory processing disorder. Susan said those with hearing loss all have auditory processing disorders.

Richard Gurgel is studying the relationship of hearing loss and dementia. Are individuals with diagnosed mild dementia experiencing decline in auditory processing? Older individuals who have hearing loss but didn’t have hearing aids showed improvements once aided, not just in quality of life but in skills. People were thinking they had dementia when they didn’t.

Starkey on listening fatigue.

Amplification study. Amplification has limited improvement for those with a steep slope high frequency hearing loss.

Susan recommends the LACE (Listening And Communication Enhancement) Program, it improves listening skills.

More publications by Mohan Matthen on hearing loss and displeasure.

The Ditto

I got the Ditto about a month ago, curious to try things out that might help the hard of hearing.

ditto

picture from pc world

The Ditto is an alerting devices for phone calls (I rarely do the phone), incoming texts, email and more.  It has a good, strong vibrate for such a little thing and it has several options of vibrating patterns.  I had a few people ask me why I wanted to try this because our phones alert us in several ways.  So here’s my deal…

My phone is always silenced.  Any noise that I can hear from any distance is going to be LOUD and obnoxious.  When it’s that loud, it scares me half to death when it goes off.  I have a flash alert set instead which works when I’m near the phone and remember to place it face down so I can see the flash.  If I’m out and about, it’s in my purse or in a pocket unless I’m expecting a text then I’ll carry it in my hand, hopefully face down to see the flash.  This makes me pretty attached to my phone and my hands full at times.  It might be nice having the Ditto but I didn’t expect to like it much because it is Bluetooth and drains the battery on my phone.

 

I tried it out driving to the SayWhatClub convention in Boise at the beginning of August.  I kept it plugged into the car charger.  It was nice to know when texts were coming in and I knew to look when I stopped.  Then I wore it the next day because I kind of liked not having my phone in my hands all the time.  I tried it in the pool (it’s water proof) at the hotel.  It seemed to lose the bluetooth connection and the ‘tether’ alert would go off.  (Tether is an alert designed to tell you when you are too far away from your phone or forgot it somewhere.)  That night I went out on the Boise Brew Cruise I kept it on (charging my phone before I left).   The cruise took us to 3 Boise brew pubs and my phone and the Ditto kept up.

So I started wearing the Ditto more because at the convention not only do I have my family/friends texting as normal but we attendees also start texting each other for information on activities and such.  I’m also charging my phone a lot more but I don’t mind because it’s useful for me.

At home I continued to wear it because I liked not carrying my phone around with me.  I wore it at work so I didn’t get behind on texts, mostly what’s going on at home and things can happen fast at home.  Yesterday I forgot to take it to work with me and I missed it.  I’ll have to start tucking it into a purse pocket.

I don’t use it all the time because sometimes I like having a break from my phone or maybe I’m not doing anything more than watching TV so I can check my phone.  I’m glad I have the device though, it’s frees my hands up and I can forget about my phone for a while confident I’ll get the alert.

The only time the vibrate freaked me out is when I was in the backyard with the bees.  My husband has a hive of bees and bees can freak me out.  The bees were thirsty, zooming back and forth in the yard looking for water.  I was trying to get some toys out of the shed for my grandsons while keeping my cool.  My tether alert went off and I did this freaky dance in the yard slapping at my collar-bone while turning a circle.  It took me a few seconds to figure it was the Ditto and gather my wits again.  It probably looked funny but the 5 yr old and 1 yr old didn’t catch the humor.  They were just looking at me crazy like wondering what I was going to do next.

* Texting is my main mode of communication.  I think in an average month I send and receive around 2,000 texts.  My record is around 4,000 and that was about 4 years ago.

 

Lipreader

I’m a lipreader and I say that to people thinking it’s straight forward.  I haven’t said hard of hearing in a few years because people think it’s talk louder, not look at me.  I want them to look at me so I hear better and I can see.

A few weekends ago I attended a little get together.  The lights were dimmed to create atmosphere so I asked the host if he could turn up the lights so I could hear better.  He laughed and thought that was so funny and I meant to deliver it in a humorous way to keep the request light.  My husband told him, “It’s so she can see your lips better.”  The host is a sweetheart and he turned up the lights and I did okay!

Most hearing people get it when I say I lipread.  (It’s politically correct to use speechreading these days but most people understand the term lipreading better.)  I use my remaining hearing also, like pieces to a puzzle.  Lipreading works well.  It gets them to face me and sound is delivered right to me and I can use my lipreading ability too.  Between the two, I get along great in many situations.  Until I don’t.

Being a Burning Man person since 2002, I attend regional burns and this last weekend was one of them.  I went to run around the fire like the old days but a ranger stopped me with arms out.  I hear enough to know she was talking but heard nothing of what she said so I told her I lipread.  She immediately started using American Sign Language (ASL) with me and I t was hard not to roll my eyes.  Or maybe I did. I told her “I lipread, I don’t sign.”  She stopped but then she didn’t know how to talk to me. She kept looking down and away so I told her to keep her face toward the fire so I could use the light too.  After all that, she was pretty good and explained the new rules of the burn.  I eventually admitted to her I am learning sign but I’m not fluent enough to have conversations yet.  She told me she’s an interpreter at the local college.

Today I was talking to another lipreading friend and she said she often has problems lipreading interpreters.  I thought that was odd at first because at work the interpreters will voice interpret for me when necessary….but wait.  I work at the state Deaf and Hard of Hearing Center.  They know me and other hard of hearing people so they know more about our needs.

So I started thinking about it. I have a neighbor across the street who is also an ASL interpreter at the local community college.  She’s painfully shy and doesn’t use any body language when talking to me nor facial expressions.  (Hard to imagine her interpreting.) She talks super low too and I barely register her voice most of the time.  I think my friend is right, most ASL interpreters don’t know how to talk to the hard of hearing.  What an odd world.  The Deaf and the Hard of Hearing have troubles with hearing communication so you’d think it would cross over but it generally doesn’t.

lipreading website

Want to learn more about lipreading?  Here’s a few sites for you.

Rachel Kolb.  She’s deaf and she signs but she also lipreads.  She made a great video describing how hard it can be to lipread.  https://vimeo.com/148127830

Here’s a site for practicing lipreading though it’s from the United Kingdom.  The accent makes it harder to understand however I was surprised at how many words I understood.  https://pddcs.co.uk/2013/11/19/online-lipreading-practice-resource/

Here’s the American version which is easier but after a few lessons they charge a fee.  https://www.lipreading.org/

For a lot of fun and to see how lipreading can go so wrong, watch the bad lipreading series on YouTube.  Here’s a football one to get you started https://www.youtube.com/watch?v=W-kGosnzvjU There are all kinds of them, including politics, Star Wars and more.  Be sure to click the CC button. Sometimes it’s YouTube craptions but mostly I think they have good captions.

Here’s my favorite speechreading book: https://www.amazon.com/Speechreading-Carol-Garretson-Harriet-Kaplan/dp/B0088OYYFW/ref=sr_1_1?ie=UTF8&qid=1468884139&sr=8-1&keywords=speechreading

There are DVD lessons to buy out there too but I’m not seeing the one I work with.  I’ll find her full name when I go to work on Wednesday and enter it in the comments afterward.

There are lipreading classes available.  I know because we teach them here in Utah.  I teach the class myself and it’s my favorite one.  Look up your state Deaf and Hard of Hearing center for resources.  Try a web search too.  The bigger the city, the more likely there will be one in your area.

Summer Busy

I keep thinking I need to post but haven’t had much time between summer camp trips, work, family and holidays. I’m not done writing about hearing loss by far but I haven’t had a lot of sit down time at my computer either. Even now I’m tapping this all out on my phone. 

Summer fun (and work) also involves the SayWhatClub convention coming up August 3-6 in Boise, Idaho. I have so much fun at their conventions and look forward to every year. I’m also on the convention committee which means a chunk of my time goes into helping to put this event on. The last month always has its challenges, the main one being getting a temporary hearing loop put in.  None of the audio visual companies up there are willing to put in a loop. Most haven’t even heard about it so I got to do a little educating at the very least. 

It’s like Boise is in the dark ages in regards to hearing loss needs. Not only are we having problems with the loop but there are issues with getting a play captioned at the Shakespeare Festival. They are really dragging their feet over this.  Boise needs us. 

In spite of the problems I know things will come through. I’m reminded that success is not a straight line. 


I will have fun. Here’s picture of past fun…

2012 My first ever SWC convention. This is the welcome party where I wore balloons because the night before someone learned the ASL phrase “She has fake boobs.”


2013 Fun with my tutu at the banquet.


2014 My tiaras and her bug eye glasses made for a lot of goofing around.


I missed 2015 only because my grandson chose that time to come into this world.  I have a great outfit planned for the banquet this year, pictures will come after the convention. 

So I leave with this quote I saw in FB this morning. 


From one of my favorite authors, Paulo Coelho. I’m not going to apologize for my hearing loss or regret it. I’ve met too many good people thought it to ever regret again. Hate myself? Never, there’s more fun to be had, especially with my tribe. Dieting-ah that is something I think about but the quote is right…be brave, be who we are and take risks. Even with hearing loss we can live this life!

my Not hard of hearing life

I’m going to post about me today and not so much about hearing loss.  Hearing loss will slip in because it’s part of my every day life in some form or another.

  Here’s my husband.

kenny

We met in 2007 at Burning Man.  We’ve had our ups and downs like most couples and we hung in there enough to get married a year and a half ago.  We are doing well as a married couple, to death do us part.

We camp a lot.  He might say we don’t but I think we do.  Last week we were up at Green River Lakes, WY.  Last month we were in the Grand Staircase near Esclante, UT and Capitol Reef.  The month before that, we were camping in Eastern Arizona for their regional burn.  Next month it’s camping again for Utah’s regional burn.

Sagurao Man

Saguaro Man in Arizona

Grand Staircase

Green River Lakes, WY

I have 3 kids, my daughter being the oldest.  All 3 are in their 20’s.  I love family time with my kids. I don’t to get to see them all 3 together at once but when I do I sure treasure it.  We have good times together playing cards, watching movies and goofing around.

kids and me

Me and the kids in 2008

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It can’t ever be a serious picture.

A few of many card nights.

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This picture includes my son-in-law.

My daughter has given me two grandsons I absolutely adore.  The oldest is 5 years old and the youngest turned 1 year old last month.  I never knew being a grandma would be so much fun.  My daughter says it’s because I get to sleep at night.  Perhaps.

grandbabies

wagon

My parents live in Arizona and I try to visit them when I can.  (Except summer, I’m done with desert summers.)  I have just as much fun with my parents as I do my kids.  We all get along (my parents & my kids) so well it’s abnormal I think.  We always thought I favored my mom’s side of the family but we found out this winter I actually look more like my dad.

I have a 12 year old cat, Squeaker.  I’m not sure how old he is even though I’ve had him since he was a kitten. I’ve lost track of time and it’s like he has always been around.  He’s 19-20 pounds and my constant companion.

In between husband, kids, grandkids, cat and camping I read and write.  I sit on the patio under the apricot tree with the husband, go on picnics up in the mountains and travel visiting friends.  In between that I cut hair and work part-time at the state deaf and hard of hearing center.  I volunteer for the SayWhatClub, I’m on the steering committee for our local HLAA chapter.  I also run a few Facebook pages and help with a few others too.  There’s rarely a dull moment which is why there are gaps in my posts and delays when I reply to comments.  It’s a busy life!

The Hard of Hearing Wand

There are times I wish I could wave a wand to make others hard of hearing for a day or two.  I’m not supposed to wish hearing loss on anyone, I know, but some people need to learn empathy.  I don’t wish on it everyone, just a few of the very difficult people I run across. I wish I could have waved it over the lady in the salon who insisted I keep answering the phone even though I got names, numbers and information wrong all the time (this was before caption phones).  I would have waved the wand over another lady, a secretary,  at an assisted living home I worked at as hairdresser.  She never would come close enough for me to hear/see her properly  like I was contagious.  Or my ex-husband who would hated to repeat and would say, “I SAID…”  And the people who won’t stop moving their heads when I’m trying to lipread them.  So maybe I’ll wave my wand around a bit here on my blog.

Here’s some things I’d specifically like hearing people to understand:

Words full holes and the mind racing to fill those holes at the sound of speech hoping it makes sense at some point.  It can be exhausting.

hearing loss looks like

See the difference?

Why hearing aids aren’t called ‘hearing miracles’.  Yes they help but they do not make my hearing perfect again.  Then you’d know why the question, “Are your ears on” makes me twitch.

ears on

Yes my ears are on.

Now that you are experiencing temporary hearing loss, try hearing someone from another room; to hear a voice and not understand most of what’s said.

in the dark

It’s like being in the dark.

How about talking on the phone with a disembodied voice (very similar to above)?  No lips to read, no body language to take cues.

hearing in the dark

Yes!  I’m still in the dark.

You like watching TV and movies?  Try it with a hearing loss and you’d know just how hateful it is without captions.

no captions

That’s all we hear on TV without captions.

 

This is for the people who think they are funny, who repeatedly say “huh” as a joke.

not funny

To feel what it’s like to be dismissed and excluded from conversation with the words “Never mind.”

never mind

Those words are a wall.

That’s just to few people.  Thank goodness the majority of the people I run across are good with accommodating me.  I keep my focus on the good people mainly and I happen to know a lot of them. Mostly I’d use the magic wand for good; to restore confidence, take away pain and give hope to more people with hearing loss.

At the ALDA convention last year in Scottsdale, the Arizona Commission for the Deaf and Hard of Hearing did give hearing loss to a number of people for a day without a wand.  They got people to agree to wearing custom made ear plugs and asked them to wear them for a day.  It was eye opening to all those who participated, giving them more empathy towards those in their lives who have hearing loss.  If you are interested, Dianna Nanez, a reporter for the Arizona Republic, wrote about her story.

What could you add to this list?