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In the late 90′s I started an internet search late one night for a hard of hearing support group. I felt alone in my hearing loss and desperately wanted to know others like me, how they coped and if there were secrets for getting by in the world. The first few entries listed on the search showed ALDA (Association of Late-Deafened Adults) and SHHH (Self Help for the Hard of Hearing now Hearing Loss Association of America). Their websites featured chapters sprinkled around the country and while that was exactly what I wanted, I lived too far away from them in a remote part of California. The nearest chapters were at least 2 hours away and that just wasn’t practical or feasible.

Searching further I ran across the SayWhatClub website. It was an internet based community and I joined right away. I don’t need to tell you all how much I learned and the new friends I made because you probably already know. I learned everything I know about hearing loss here from others like myself. It was a godsend.

In July of 1998, the SWC held their second mini-convention, a group camp site in Rocky Mountain National Park. I lived in Blythe, California, and on the way to Colorado, I picked up SWC member Joannie, also from the Connect list, in Vegas. We packed my green Mercury Sable full of camp gear and food and hit the road. It was our first face to face meeting though we were friends on the list. Talking in the car wasn’t easy but we still had fun traveling together.

A day later, I met twenty something other SWC members from various lists and we had a great time. Everyone heard and made sure the others heard. From time to time I heard someone call out, “Hey! You’re faking it!” because there was getting away with it in this group. Throughout the whole weekend, no one felt left out of conversation to my knowledge, even at night around the campfire. Someone brought a guitar, we sang (off key I’m guessing), we shared stories and there was a lot of laughter. The experience of being with others like me touched my heart.

Here’s a few pictures I took of other members. I think I was so happy to be socializing that I didn’t take many pictures, darn it. I wish I had taken a group photo.

Me, almost fourteen years ago

Melanie, Deb and Ling

Karen and her family, Melanie

Paula, Raj, Bob and Christine

Bob, Walt, Raj, Brenda and Christine

Without the SWC, I don’t know where I would be today. I haven’t been to another convention since that first one and how I wanted to go the last couple of years but money and time prevented it. In 2012 it’s going to be held in Salt Lake City and I’m on the committee so I get to attend! Yea! I’m excited to meet more SWCer’s and I just know it will be another event I will remember forever.

Not only do I get to attend but I get to help plan it. We are still working on things but here’s a sneak preview of what’s to come.

We have John Waldo coming to speak. For those of you who don’t know him, he’s an attorney (hard of hearing himself) from Washington who advocates for equal access for the deaf and hard of hearing. He fought for captioning in theaters and some of us are now seeing those results. He’s done this and so much more. Visit his website for latest information on access and advocacy issues, Wash-CAP.

He came to Utah about a year ago to give our Popcorn Coalition, now Utah-CAN, a pep talk on getting equal access in public places and I had the pleasure of seeing him speak. One of the things he stated was how we hard of hearing folk seem to be the meekest of the handicap groups. We are hesitant to make our needs known, not wanting bother others with our requests but you don’t see that with people in wheelchairs… they aren’t afraid to ask for equal access and are much more vocal about it. That got me thinking and gave me courage to attend a couple of events that I would have otherwise shied away from, with success. It’s ok for me to ask for my rights and most of the time people are willing to work with me. If I’m not going to ask, who will? I’m excited to have John Waldo attending our convention and eager to hear him speak again. Come to the convention, listen to him speak and see what inspiration he offers you.

There’s going to be a fun workshop called Happiness 101 with Frank Clayton who is a licensed counselor in Utah. Come learn about what happiness is and is not, the myths of happiness and the happiness set point. Learn why you’re not happier, but most importantly come to learn what will make you lastingly happier based on scientific research. Visit his website, Happiness 101.

When I moved to Salt Lake City, I discovered the Sanderson Center for the Deaf and Hard of Hearing. This place has been a haven to me and it too has a special place in my heart. I went to the Sanderson Center the first time to attend a local HLAA meeting and to my amazement, CART was provided. It my first time experiencing it although I heard of it long before. We hold our Walk4Hearing meetings here and CART is provided. Seminars are offered, with CART (or interpreters) and workshops as well. They provide classes for the hard of hearing as well. There is a level of acceptance here which I only experienced 14 years ago in the Rockies at that first SWC convention.

Donna Penman and Jazzy came last August to visit Salt Lake, to see if it fit the needs for the convention and scout hotel sites. I took them to the Sanderson Center and Donna was amazed at the set up we have here. I believe it’s considered to be one of the best hoh/deaf centers in the country and I feel incredibly lucky to have landed here in Salt Lake City for that reason. The Sanderson Center is eager to help us with the convention and will provide tours of the premises, even sending vans to pick us up. Check it out when you come.

That’s all the news I have for you now but I will update you all as details are settled. Be sure to mark your calendar and join the SWC convention, August 15 – 18, 2012. See you there!

The airplane

A few weeks ago I went to Maui with my aunt and her grand daughter. After having so much trouble hearing on the plane from Chicago to Salt Lake, I warned my aunt right away about not hearing well at all on planes.

“I’m basically deaf on the plane,” I tell her. “The engines take away all my hearing.”

“You told me before,” she said.

I had? Oh, good. That must have been on my mind for awhile.

We take off in the plane and when we hit the correct altitude, the stewardess came down the isle. I could smell food so I correctly assumed it would be the food cart coming first and not the drink cart. I studied the menu to make sure there would be no other choices I’d have to make with my meal.

The stewardess parked her cart near me and I ordered my food using prediction instead of hearing when she came to me. I did good on that part then she asked me a question that didn’t relate to food. Her mouth moved and I heard nothing, not a single sound except the roar of the engines. I asked for a repeat and her mouth moved again. I still didn’t have a clue. I looked to my aunt for help and she tried repeating it for me. Still nothing.

“I’m sorry,” I told the lady, “I’m deaf and I can’t understand what you are saying.”

She tried one more repeat and I shrugged with a goofy smile.

Clearly, I wasn’t going to get it so she shook her head and I think she said, never mind. (Now how come I know those words so well?) She pushed a button on her credit card machine and handed me a receipt.

Oh!!! Was that all? Did I want a receipt… how silly. What a stupid thing to haggle over. She should have just printed the damn thing and gave it to me to begin with. Ugh! OK, I’ll be nice.

When the drink cart came I went with a soda and when it returned later I kept it simple with water. Another stewardess later came down the isle asking another question. I don’t remember what it was but instead of playing the repeat game, I told her I was deaf so she nodded her head and went onto a mime. Wonderful! I liked her best of the three.

My aunt and me, not long after getting off the plane.

Touring

I went on a couple of tours while on the island and of course all tours come with lectures, bits of information being tossed out and others asking questions I never hear. For the most part I won’t ask others with me to repeat unless it’s something I really want to know because I don’t want to intrude on their experience. I suffer quietly or I get irritated because I want so much to know what’s being said and I can’t or I accept it graciously. I never know which emotion I’ll get until the time comes. Too often I psyche myself up to not hear so I’m not so disappointed when I can’t.

The first tour was a boat ride out toward another island for snorkeling. We were hoping to see a few whales along the way, and we did, and dolphins, we saw them too. On this boat there were multiple speakers. Luckily, they happened to be near enough to me that I could use speech reading to get more out of the lectures than I thought I would. I was pleasantly surprised I could understand a good portion of it. It took a lot of concentration but I did it. We were on the boat for about 5 hours so I did come home from that trip tired and worn out from concentrating so much. I took a nap afterward and still felt tired the rest of the day.

The next tour was a trip around the island, the road to Hana. We, myself and my aunt’s grand daughter, rode with 8 others in a large, airy van with comfortable seats. As we approach the bus I think I will snag a front seat for better hearing and seeing but as we get on I see we are the last to be picked up so it’s the back of the bus babe. Our Hawaiian driver, Joe, had a microphone on and started giving us history right away about the island as we drove to our continental breakfast. I brought my FM system but forgot to ask him if he would wear it when I got on. It’s hit and miss without the FM so I sort of kick myself for that 20 miles. He named monkey pod trees, I heard mesquite trees and banyan. He said one of them (the banyan?) had the ability to lay down when it got tired. A tree getting tired? I wish I had heard more about that.

We arrive at the golf club which hosts the continental breakfast and he tells us to be sure we get on the right bus when we come back because they all look alike. He says the name of the bus and I miss it but I do hear him say it’s on both fenders. Joe tells us to hurry before the other buses come and it’s gets crowded. Then he says something about door and bathrooms and I miss the rest so instead I follow the others, being careful to check the fender of the bus, and they lead me to the breakfast.

The name of the bus, Pa'a Mo'olelo... I never would have understood the name anyway.

I eat only a little and I eat it fast so I can get back to the bus before the others and talk to Joe about my FM system. He readily agrees to wear it. I feel better.

So we get going again and though Joe’s voice comes through richer and louder but I still miss a lot of what he says. If I really focus, I can understand a lot of what he says but this is almost a ten hour tour and I don’t want to wear myself out like I did the day before. Sometimes I focus on him and sometimes I enjoy the lush green scenery. Oh well, I tried and at least I remembered to bring the FM system which did help a little.

He stops at one point while I am enjoying the scenery instead of focusing on his words, and I hear, “wah wah wah pineapple trees, wah wah wah.” It’s almost like listening to the Charlie Brown adults. I look around to see if I can pick out the pineapple trees but there’s so many other trees that I can’t tell. It takes me another 3 hours on a small hike to figure out which ones are the pineapple trees and that’s because I stop to take a picture of some funky little trees and see a pineapple growing on one. Oh, those are pineapple trees and I have been seeing them all along.

The pineapple tree, at last!

That’s how a lot of my tour went but I did enjoy the trip, the scenery, the waterfalls and small hikes that were offered. Probably because I missed things he said about each hike, I found different paths and some new sites. I knew going in I wouldn’t hear much so I wasn’t too worked up about what I missed. The scenery made up for it all anyway.

Back on the Airplane

On the flight home, I plugged into my iPod. If I’m not going to understand any voices, I might as well enjoy my music. This time I get three barely nice stewardesses. I let them know I’m deaf but I follow their eyes to my iPod. They don’t say anything but clearly they don’t believe me. How can tell them the earbuds (evil things that they are) block out the jet engine noise so I can hear my music better than her. I don’t think there’s any possible way to have her talk to me while filtering out jet noise.

So that’s a piece of what vacationing in like with hearing loss.

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