After I moved to Salt Lake City in 2009, I looked up Self Help For the Hard of Hearing (SHHH) and in the process found out they changed their name to the Hearing Loss Association of America (HLAA). The local chapter held it’s meetings at the Sanderson Center for the Deaf and Hard of Hearing. The local HLAA chapter website showed CART was used at their meetings. Hooray! I’d finally get to experience it.

When I walked into my first meeting, I saw a screen pulled down, a projector hooked up to a laptop, and the laptop hooked up to a funny little machine on a stand.  A lady sat near the wall, her hands resting on the steno machine ready to go. Test words were up on the screen and I couldn’t wait to see it in action.

The meeting started and words appeared on the screen following the conversation. Immediately, I fell in love with CART. Even though I wore FM system, I still missed words and sometimes important key words. CART filled in the gaps and I never had to wonder what I missed. It was one of those personal, historic moments in my life.  It was a magical experience for a hard of hearing person who has always struggled to hear in group situations. Real-time captioning felt like a godsend.

Since then, I haven’t missed many meetings. I’m going to take advantage of CART all I can because for so many years I went without. All the workshops at the Sanderson Center have CART as needed (ASL interpreters too) so I go to many of them as well. It’s an all inclusive environment for those of us who have hearing loss or deafness. Every time I walk into the Center, the load I carry on my shoulders lightens considerably. I know I will hear. I won’t be lost in lectures and presentations. It’s the one place, I don’t have to worry about asking for repeats, because it’s right up there on screen for me.

As I got comfortable at meetings and got to know people, I also got to know our CART provider. Julia is one awesome lady and we all appreciate what she does for us so much. One night, I stopped for a closer look at her stenography machine and realized it wasn’t a keyboard I was familiar with at all. I don’t know how she does it and my admiration for her and what she does went up a few more notches. That’s a crazy machine she works on but she puts it together nicely.

There’s a few typos now and then. Most typos I read right through but some make me smile. When she sees me smiling, she looks down at her lap top screen to see what came out and either smiles, rolls her eyes or both.  Some of them are just like what I’d hear if I didn’t know any better. One day during an Alzheimer’s workshop, she typed “farm suit call” and if I said it fast enough, I knew exactly what she meant, “pharmaceutical.” Thanks to the rest of her captioning, I knew the context of what we were talking about so I wasn’t lost. (That typo still makes me smile.) I think she’s one of the most wonderful people on earth and I’m thankful for her, and people like her, who provide services for us.

Many people haven’t experienced CART, maybe because they live in small towns like I did or maybe they never knew it existed. We had a Walk4Hearing meeting the other night so  I snapped a few pictures for people to get a general idea.

Our CART provider who has a concentration look much like we do when we are listening to others.

How she does it, I’ll never know.

Letter and background colors can be changed.

Our guest speaker was Ronnie Adler, national administrator for the Walk4Hearing.  She flew in from Philly and to help us with our Walk.  You can see her talking and the screen behind her, showing CART.

So now you’re seen it.  Maybe you can experience it in person all well.  If you come to the Salt Lake City SWC convention, you’ll get to experience it  in our workshops.  Not only that, but we have John Waldo speaking at our banquet about captioning.

For more information check out these websites…

Communication Access Information Center: http://cart-info.org/

For a listing of CART providers, the Collaborative for Communication Access via Captioning website has a state by state listing of CART providers. http://ccacaptioning.org/find-provider/ Be sure to read the rest of CCAC’s website for good information on access as well.

• Having a hearing loss forces you to view things from a different perspective. We loose out on something but gain so much more in other ways. No one has it “all.”
• You are more aware of the world around you using your other senses and can see things “normal” people miss or taste something or smell something that normal people will never be able too.
• I think hearing loss makes us nicer people for the most. We have more patience, sympathy and understanding than many people for all disabilities.
• Because of hearing loss, I’m co-chair for the Walk4Hearingand sit on a few other committees advocating for hearing loss awareness.
• I’m pursuing a dream because I couldn’t hear at work anymore.
• I can listen to a radio station with static and not even realize it. Sounds good to me! I don’t even know when I’ve blown the speakers in my car.
• Sometimes I can make conversations more interesting than they really are by telling everyone what I heard. (This one came up a few times.)
• Sometimes you can pick up transmitter radios, CB radios and spanish channels with your hearing aids in T mode….a normal person cannot do that!

I can use my “selective hearing” and tune awful noises out….

• Tuning out whining kids, bratty people or obnoxious co-workers.
• I can’t hear crying babies in the seat in front of me on a plane.
• I love not hearing my husband snore in the middle of the night, not hearing
  him come to bed after me and shut the window and close the blinds. I sleep through all of that. (Others wrote about not hearing their significant other’s snoring, a popular one!)
• I’ve learned that I can always poke the HAs to “T” in church when there’s a screaming baby, and get a neat, ambient humming soundtrack anywhere, to give my ears a rest.
• Barking dogs don’t bother me at night when HA is out.
• I’m able to tune hubby out when he’s annoying (said with a smile).
• Noisy neighbors don’t bother me as much.
• I don’t have to listen to political ads!!!

  And…

All the new friends I gained with finding SWC!

We skipped the following year because my boyfriend had his appendix taken out. Later that year, I bought fancy, new hearing aids which were a big difference from the old ones. I could hear the radio in the car again, small social gatherings were easier and I had a few new programs in them, one for toning down noise.

Last year, we went again expecting to have as good of a time as the first year. We were early and I started chatting with people I knew. As the place filled up, it became harder and harder for me to hear. Music played in the background, the crowd was larger and I kept leaning closer and closer to people to hear them. People tried talking to me but it was no easy task. They were polite and after small talk, turned around to talk to other people. While trying to talk to one lady, I realized I was relying on speech reading heavily. That shocked me. I’ve never had to do that before!

My boyfriend played a role in a gag award so he was preoccupied jumping up and down to visit or setting up the award scenario. He is undiagnosed A.D.D. His attention span is short and that kind of environment is distracting to him, making listening hard or focusing on any one thing. He was everywhere interacting with everyone as I slowly withdrew from everyone.

I couldn’t hear conversation at the dinner table. My boyfriend was called for the gag award and I sat at the table close to tears. I knew the gist of the award but couldn’t laugh with everyone else. Never before had I felt ‘deaf’ at an event. I changed programs on my new, super-duper hearing aids that didn’t work. It was just too noisy. I even took them out to see it would help but nothing made a difference. I sat there lost in a sea of noise with happy people all around me laughing often at the gag award. I couldn’t take it so I got up to go look out a window.

My boyfriend sat back down at the table when he was done. After ten minutes, he looked around for me and motioned me back to the table. They started giving service awards and I missed my boyfriend’s name being called out, unusual for me. My boyfriend talked to everyone except me and I could barely hear him.

The more I started freaking out, the harder it became to hear so I wound up back at my window, looking over the snowy night landscape trying to soak up it’s peace. I tried deep breathing. I took out my phone and attempted texting friends to show myself I could be social in some small way but it was Saturday night and they were busy. Mostly, I stared out the window, trying not to cry.

My boyfriend came up to me. “What’s wrong,” he wanted to know.

“I can’t hear,” I told him.

“So what. You know you can’t hear at these kinds of things.”

“Yeah but I really can’t hear.”

“Come back to the table and I’ll help.”

That didn’t turn out well either. He wanted to be talking to the others and when he repeated for me, he looked resentful. He didn’t understand my mood at all. In my meltdown mode, I couldn’t make him understand either. I wound back at my window taking a break from the stress. About fifteen minutes or so later, he realized I wasn’t at the table once again so he came to me.

“What’s wrong,” he demanded.

“I told you, I can’t hear.”

“Well, if all you’re going to do is cry, then go home.”

I couldn’t believe he said that. I went over to my purse, got my keys and started for the door.

“Where are you going?”

“I’m going home.”

“Wait, stay. The dancing will start soon and you know how much you like dancing,” he said holding my arm but my tears were about to spill over. I stood there for a moment, wondering if I could pull myself together enough to enjoy the dancing. Before I could answer, he added once again, “Or go home if you’re going to cry.”

I left without looking back. He came home about half an hour later and I could not make him understand what was going on with me. It took me months to be able to put into words; it was the first time noise rendered me deaf (but it hasn’t been the last time).

The whole scene ran over and over in my head for a few weeks. What could I have done to make it better? I could request copies of their notes. I could take my FM system next time. I could request CART. I could take a friend, knowing how hard it is for someone with A.D.D. in that kind of environment to help me. I talked about it all with my boyfriend off and on over the last year but he truly did not understand my position until about two weeks before this years banquet.

Searching for other words to use, I told him he socially abandons me often. I don’t expect help for everything but some help is nice. I have certain needs to be met if we want to continue to go out to these type of events. Those words sank in and he apologized.

We weren’t sure if we really wanted to go this year, should we skip it? We both had a sticky residue left from last year’s disaster but we continued to talk about it all. I told him I didn’t want to give up on socializing but I need to new ways to be able to enjoy them. I listed all the options I thought of to help me this time around. We decided the day before the banquet to go. It was too late to request notes or CART but we could take my FM system.

With all of that firmly in mind, we went to the banquet early the next evening. He introduced me to the main speakers and we showed them my FM system. They agreed to wear it without reservations. The place filled up and it was all the noise I remembered. My boyfriend didn’t present a gag award this year so he stayed beside me through most of it and helped me with table conversation filling in the topic as needed.

They announced the awards would be starting soon so my boyfriend and I went up to give them my FM system. The main guy wore it around his neck and as they started speaking I could hear about half of what they were saying, piecing things together nicely. Soon I had hearing people asking me what they were saying because there was enough noise they couldn’t hear the PA system. That made me smile.

A few times they forgot to give the transmitter/remote to a new speaker which gave me a hearing break. Over all, it was much happier experience. One of the guys from our table got up to speak and he held the remote in the same hand as the PA microphone. That worked better than it hanging around people’s neck. When he sat back down at our table, we thanked him and he suggested taping it to the microphone next year. Great idea!

When dinner was done and the music started, I visited with some of the women around the table, letting my boyfriend visit with his friends. I sat close to the girls and they made sure I could hear, repeating as necessary. They asked questions about hearing loss and my FM system and I told them all about it. A few wanted to pass the information along to relatives.

This year, I danced and it felt good. I still hear enough to pick up a good beat and a lot of the songs were ones I knew making it more fun. My boyfriend and I went home happy, proud of this years accomplishment. Sometimes bad experiences are learning experiences. Maybe there are happy endings if I don’t give up.

After a year and a half in Georgia, I moved back to California and I kept up the volunteering. I went to my kids classrooms to help the teachers once a week and I joined the PTA. As the kids grew older, I stopped. It wasn’t cool having mom in the classroom anymore. I took a break from volunteering unsure of what to do until I moved to Salt Lake.

Not long after moving here, I re-joined the SWC again and located the local Hearing Loss Association (HLA) chapter. Within six months, I found myself their president. About a year later, I became involved with setting up the first Walk4Hearing here as well. The SWC Connect list asked if I’d like to become a list representative and I said yes. Since the SWC is holding their convention where I live, I am helping with that too this year. Then I agreed to take a position on the Utah advisory council representing the hard of hearing. I’m a part-time volunteer and all of it is for hard of hearing causes.

I believe in reaching out to others with hearing loss because I remember how alone I felt twenty years ago when mine first started. I had no support and no one to talk to about it all the first five years of wearing hearing aids. Thank goodness for the internet and finding the SWC in the late nineties or I might still be faking it with no clue to the technology available and very little healthy coping strategies. It only feels right that I give back to the SWC for turning my hard of hearing life around.

Today, I am encouraging you to volunteer. Together, we can accomplish a lot. Individually, we struggle. At the local level, I see only a few of us volunteering over and over again. Because of that, I’ve seen some hit burn out and dropping out completely, leaving fewer of us. Now and then someone new comes in and steps up to the plate. It’s heart lifting. “Yes! We can accomplish a little more now,” the rest of us think.

It doesn’t take much to volunteer. Yesterday I sent out a request on an email list (not SWC) for an open position on a board which meets for one hour, once a month. That’s it. It’s an easy board to be on and I learn about what’s going on in our community d/Deaf and hard of hearing wise. No one responded.

On another committee, maybe four of us show up consistently and it’s one that takes ten people to run smoothly. If we had a someone for each chair position, we could away with three hours, at the most, a month. Two of those hours are for the meeting once a month and most of the time, the third hour is not needed. The task is looking really rather large to the four of us right now… almost overwhelming. It’s a good cause so we don’t want to give it up but if things don’t improve this year, we may have to. It’s sad to give up an event that draws a couple hundred or more from the hearing loss community together for one big, fun filled day a year.

Every committee I’m on could use more a little more help. The more volunteers we have, the easier the job is for everyone. One or two hours a month is drop in the bucket. It could be as little as going to your local HLA chapter meeting and supporting their efforts by showing up. See if they need any help with a small task. Ask SWC what you might be able to do for them. Or maybe there’s a desire to volunteer else where in your life. Go for it.

The benefits of volunteering are; it keeps us active, social and it’s an accomplishment that feels good. It also helps to fill in resume gaps. Keeping our brains active help us live a longer fuller life. It’s easy for those of us who are hard of hearing to withdraw, stay home and keep things simple. Resist that once or twice a month. Start slow and easy to keep from getting overwhelmed. Most volunteers I meet have big hearts and loads of patience. I meet some awesome people while volunteering. I would like to meet more.

Somewhere in the darkness I seem to have lost me….

I see you standing there, in your heart I know you care;

Although your smile warms my heart,
our souls are still “miles” apart

The walls are closing in on me,
the air is getting thin, I need to find an opening,

I want to let somebody in…

In your eyes I see the the pain that you wear
as you witness the burden I must bear

In your voice I find my peace,
for this is my strength I need release….

Kayla, a young mother, lost her hearing suddenly the day before her wedding in the fall of 2007. 

The time is NOW to get involved.   We are everywhere.  Collaborative Communication Access via Captioning (CCAC) is making a short film with YOU as the speaker.  CCAC is seeking volunteers globally to help make this short film.  CCAC has the producers and all they need are the volunteers to make a short video with a pre-arranged script that they provide for you.

Are you interested? Go to this link for all the information but hurry because the deadline is soon.  CCAC plans to debut the film in June at the IFHOH Conference in Norway.  Be part of the action, be part of the advocacy.  We are everywhere!

http://ccacaptioning.org/resources/international-media-campaign/film-instructions-script/

How this came about:  http://ccacaptioning.org/resources/international-media-campaign/

As a few days went by and it changed to things like “I heard that sentence without missing a word,” and gave myself a little pat on the back. Then I heard my cat meow when the house was quiet and I was close enough to him. Yes! I can still hear my cat meow in certain circumstances! (I named this cat Squeaker because I thought he had a squeaky meow and later I realized it was just my hearing making him sound that way.) I spent about two weeks or so focusing on what I could hear and I felt better… but I fell back into old habits.

A few weeks ago a friend asked me how I was doing with my experiment with sounds I could hear. “Oh, well, umm, I forgot about it,” about I confessed. Maybe I should try it again he suggested. So I have.

One day as my boyfriend and I were leaving the house, I heard something I couldn’t place.

“What is that noise,” I asked him.

He listened for a few seconds. “The wind chimes,” he said.

I heard the wind chimes without my hearing aids!!! That is so cool.

Later as I drove down the canyon, I had my iPod on listening to some rock music. I always had trouble hearing the lyrics in one part of a song but that day I heard the confusing part and got the lyrics. “So that’s what they say!” I said to my empty truck. Amazing.

As I drive back and forth in town I keep the radio on, mostly on classic rock. Instead of spacing out or turning the radio down when the commercials or DJ comes on, I listen to see what words I can pick up. I have surprised myself a number of times hearing most of the commercial and understanding what they say. It’s a game for me now.

Then our HLA meeting had a speech pathologist as guest speaker. She talked about our brains forgetting sounds and having to retrain them to understand the sound again.  “What if part of forgetting sounds is giving up on them,” I thought. “Maybe keeping the positive frame of mind is a good.” So the experiment continues.

I am visiting my son in Arizona this week. He is going to the community college and taking ASL as his foreign language. After talking to one of my girlfriends here, I realized I knew the ASL teacher, sort of. I worked briefly with his wife a year before moving Utah. I had to pick up my son from his ASL class yesterday (his car was being worked on). The teacher was out wandering the parking and came over to talk to me. It turns out, he remembers me very well because when the girls first introduced me to him, they told him I was hard of hearing so he signed to me which of course I didn’t understand at the time.

We continued to chat and catch up, me sitting in my car, him standing and the wind blowing madly. In the middle of the conversation, I thought, “Hey I don’t have my hearing aids in and I’m understanding this guy completely. I haven’t even asked for a repeat yet.” Of course that made me nervous and I asked for a repeat a few minutes later. Was it because he had a good voice? Or because he looked right at me the whole time or am I better at lip reading than I thought? Again, I amazed myself.

So it’s been a fun experiment. It makes wonder, what else do I hear and not give myself credit for?

Reading this made me realize that I’ve said goodbye to things, with regard to music, because of hearing loss.  Maybe, like Mr. Mokotoff, I needed to throw off a few shackles of my own?

I’ve mentioned this before on the SayWhatClub list…  not only have I stopped listening to music, I’ve stopped singing.  I used to sing constantly in the car and around the house.  I’m not a public singer, but I do like to sing at home, usually when I’m alone.

Well, after trying to watch the grammy awards online (no captions streaming online), a few weeks ago, I became curious, wishing I could hear what all the hype is about with Adele and her voice.  I also was checking out Bon Iver and I saw a video of “I Can’t Make You Love Me”, so I listened… at least it was a song I knew… or, rather, tried to listen… I could follow along in the song from what little I heard, but I didn’t really hear any of the lyrics beyond a screech now and then.

Because Adele also does a version of “I Can’t Make You Love Me” — it was on the list of selections on the youtube page — I decided I’d listen to her rendition, which was even less lyrics heard.  Sigh…

Discouraged, I decided to go back and listen to the original, Bonnie Raitt version, which I’ve always loved.  This took a leap of faith, because I realize I’ve stopped listening to music because I don’t want to corrupt my memory of it.  Nope, couldn’t hear her singing on that video either, which had the potential to make me exceedingly sad and teary-eyed, but I nixed the temptation to go there.  Instead I’ve found myself singing the song often over the last few weeks.

My husband commented the other day that it was nice to hear me singing again… he said that I sounded really pretty.  I can’t hear myself sing the song either, but I remember how it feels to sing it, so I guess I’ve not lost that.

Turn down the lights, turn down the bed

Turn down these voices inside my head

Lay down with me, tell me no lies

Just hold me close, don’t patronize – don’t patronize me

Cause I can’t make you love me if you don’t

You can’t make your heart feel something it won’t

Here in the dark, in these final hours

I will lay down my heart and I’ll feel the power

But you won’t, no you won’t

‘Cause I can’t make you love me, if you don’t

I’ll close my eyes, then I won’t see

The love you don’t feel when you’re holding me

Morning will come and I’ll do what’s right

Just give me till then to give up this fight

And I will give up this fight

Cause I can’t make you love me if you don’t

You can’t make your heart feel something it won’t

Here in the dark, in these lonely hours

I will lay down my heart and I’ll feel the power

But you won’t, no you won’t

‘Cause I can’t make you love me, if you don’t

No, I can’t make my ears hear something they won’t, and that’s okay today.

That often leads to, “Which ear is your better ear.”

“They are both about the same,” I tell them.  At least that’s what the audiologists tell me. I think my left ear is better.

Saying I’m half deaf is easier than explaining how I hear… and don’t hear all at the same time. It’s all noise to me but I can’t make sense of the noise. I know they are talking but understanding what they say is all together different. Call my name from a crowded room and watch my reaction. I can’t tell who’s voice it was let alone which direction it came from. I have to scan the room to see who is waving their arms to get my attention.

One night at meeting with other hard of hearing folk, I told them I know I’m hard of hearing but that is misleading. What I really am is Hard of Understanding. They all laughed but I was serious! Having sensorineural hearing loss is not like being deaf. People know I hear because I respond in some sense even though I don’t know what they said. Or sometimes I hear perfectly well what they said with no rhyme or reason causing them to accuse me of ‘selective hearing.’ I wish! It’s confusing to them and me. I don’t why I heard this and not that. I refer to this as No Man’s Land. I’m caught in the middle.

How do you you others with sensorineural hearing loss get by? And how do you describe it?

Salt Lake is the most out-doorsy town I’ve ever lived in. It’s pretty here, trees line many streets, old houses, parks that take up up whole huge blocks. When the weather is good people are out. When the weather is bad, people go up the mountain and enjoy the snow.I see people outside all the time, on bikes, jogging, hiking, skiing, walking or out in the parks with their dogs. We enjoy outdoor concerts all summer. There’s an awesome arts and craft fair downtown every year, museum walks and second hand book stores. There’s theater, ballet and the symphony so the arts culture is strong.

All my life, I lived in small town and now not only do I live in a city, I live in the capital of Utah. The benefits of living in the city has been enormous for me. I became involved with my first HLA chapter and ALDA has socials here. The Sanderson Center for the Deaf and Hard of Hearing is a one of kind center in the U.S. And offers support and many opportunities for the Deaf, deaf and hard of hearing. I feel so lucky to a part of it. I’ve seen my first captioned play here and watched my first captioned movies. So I appreciate living in Salt Lake City and what it has to offer.

Oh yes, Utah has a large population of Mormons. They make the news now and then but what religion doesn’t? Moving here, I had visions of missionaries coming to the door wanting to talk to me about their religion. It’s happened once in the three and a half years. “Not interested,” I said and that was that. Most of the people in my HLA chapter are Mormons along with our Walk4Hearing committee. Not once in all this time have they approached me about their religion and they are all very nice people. I’m pleased to know them because together we reach out into the community for those with hearing loss. That’s what we’re there for, hearing loss.

I’ve been to Temple Square and the gardens are gorgeous and the buildings old. Twice I’ve been there for Christmas to see all the lights and displays. It’s cold but it’s beautiful. I’ve gone into the Tabernacle Choir building and saw the huge organ, you can’t believe it until you see it. I’ve eaten at their restaurants on the grounds and left impressed. Still no one approached me about joining them.

When Jazzy and Donna were here to scout the area, we walked around Temple Square. We went right up to the Temple itself and questioned the lady at the gate about how people get into the temple. She was open and honest about the whole process, telling us everything and even showing us her card. No one asked us that day if we wanted to join or gave us unwanted information. For the most part, I find the Mormons I meet are super friendly people.

There are liquor laws in every state that seem a little strange. Dry counties, wet counties, no alcohol sold before noon on Sunday and yes Utah has a few strange ones too but I can go to a bar any day of the week and get served. They sell beer every day at grocery stores but wine and liquor go through state stores only which are closed on Sundays. That’s it. Nothing I can’t live with.

Don’t hesitate to come to the convention just because it’s Utah. It’s still a city with a wide variety of people in it. We have some great workshops planned for you; ALD’s, Happiness 101, hearing aid technology, CI companies coming in, traveling with hearing loss AND we have John Waldo as guest speaker for the banquet who incidentally lived here for awhile and attended Utah State. CART will be provided during our workshops and banquet.

Come tour the Sanderson Center, go to Red Butte Gardens or Park City (where some of the 2002 Olympics were held and the yearly Sundance Festival). Snowbird Ski Resort has a tram to the top of the mountain Alta Ski Resort has the Albion Basin with lots of flowers.  We can eat dinner at Hooters and then we can close down the hotel bar if we want.

Or tour a few of our breweries: Squatters, Red Rock Brewing Company, Uinta Brewing among a few others.

Coffee is available all over too, the Salt Lake Roasting Company is popular here, and there’s Mill Creek Coffee Roasters, and Park City Roasters.

If you think you might want to come, register for the convention now. You can pay later, if needed as the convention committee is workable. If later you find you can’t go, you get a 100% refund if by June 15, 2012 and June 16 – July 15^th a 50% refund. (No refunds after August 1^st unless specified.) And if you’re still leery, remember, you’re coming for the company which is other SayWhatClub members. We have a good time together and create our own world. I look forward to meeting many of you and getting a chance to add a face to a name.

Salt Lake SWC Convention, August 15 – 18, 2012.