1 1 Is that better for everybody. Now, you can 2 continue. I thought before we get too much 3 further. Can everybody read her writing now? 4 And if I stay right here, we're okay. All 5 right. ESTHER KELLY: Continue. >>: Hi, I'm Kim brownan and I am the state director for HLAA and I'm here to tell you about the wonderful walk we did last year but even better the walk we're going to do this year. Many of you may be wondering what the walk actually does to help you as a member of an HLAA chapter. ESTHER KELLY: Something's squealing like crazy. >>: It was over here. Okay. We got it. >>: The walk will benefit not only us as a chapter, but it will also help the national office which helps us as a national organization. Some people are like, what do those people in Washington DC do for us? Well, they've helped us when the FCC decided to give vouchers to get rid of closed captioning on TV channels. They've helped us with legislative actions to bring cell phones in with the compatibility with hearing aids and cochlear implants. The national helps us. It's not cheap and requires some funds. This walk not only helps the national office but it also helps us here as a local chapter. Janet could share with you that running a local chapter has some expenses to it. Am I bothering you? 2 >>: No. >>: The expenses of a local chapter are things like CART, facility costs, the publications that she brings forward. Things like that. Chapters do not pay for speakers. They do not pay for anything exagg rant or the food or anything else. Basically what the chapters are paying for out of their dues are the bear minimal of things we all need, a place to meet. Air conditioning, cost of cleaning the rooms and so forth so there's costs associated with life. The walk will allow you to help us raise money to make this work. We have a web site address in which you can create a thermometer. It will allow you to send e-mails to people and through those e-mails you can have people make a donation on line. All they have to provide is their credit card information and they can make a donation to you. We will also have a kick-off meeting on September 12 at 2 o'clock at central market. >>: I think that was 15th. >>: 15th. I'm sorry. September 15. Thank you. September 15 at 2 o'clock to 4 o'clock at central market in southlake, Texas. That meeting will allow us to share more, provide walker sheets so that you can take to have someone make a pledge so you could walk next door to your neighbor to make a pledge to allow you to walk in the walkathon. In October -- my dates are completely confused. >>: October 27, that's the walk. 3 >>: Thank you. October 27th, 9:00 a.m., we will start registration. At 10:00 a.m. we will start the walk. Not only will this walk allow you to get out and walk, but there thereby other information tables there to help you learn more about resources to help the hard of hearing people. This is a great time to socialize with your friends, to come out, burn some calories and enjoy the day. Last year we did it in May and it got kind of hot so we're hoping at the end of October it will will remain kind of cool. We're also not conflicting with other events that are taking place like we did in May so we're hoping for a bigger turn out this year. There is annalal graham bell meeting going on in Dallas and many of us will leave the walk and go to that afterwards. You're welcome to go with us if you want. It's geared towards parents of kids but it's a great resource as well and some of the individuals at the AG Bell convention are coming over to walk with us so we're trying to kind of work together with other organizations to make this a really fun event. We're also wanting to raise awareness in the Dallas Fort Worth area of hearing loss. For example, Bell Helicopter, through the help of thelma is working to advertise about our walk as well as our chapters on their TV sets that play informative information. So we're hoping as an outreach to help people with hearing loss that are just at a point that need help and don't know where to go. We're working on that together. I 4 have some information packets here. If you know someone that would like to sponsor us or if you want to know more information about the walk, please feel free to take one. I have more in my car. Don't feel like I don't have any more. I have 45 more at home. If you want to contact me feel free to do so. My e-mail is mbrownen@ flash.net. And I'll be happy to answer any questions, point you to the web site or anything else you may need. Yes tommie? >>: Just might mention that after the shower we're going over to the central market and some of us are going to be eating lunch there and looking at the room where it's going to be and any of you who want to come with us to look at the community room and have lunch with us you're welcome to join us. >>: Thank you. >>: Okay. I'm going to introduce Esther and then we'll get started. Do any of you have any questions about anything that I said before we had CART? No? Okay. Just a little housekeeping as Esther starts. First of all let me introduce her, Esther Kelly who is a hearing loss resource specialist. I never know quite how to say this. Your position is funded by DARS, I know, but anyway, Esther has spoken to us once before. In fact, I think maybe our second meeting she talked to us about what's new and improved with technology and when she spoke to us before, we had so many questions and comments 5 about what she had to share with us that we kept her from even getting all the way through her material so I've asked her if it would be okay this time, if you have papers and pens and if you have a question, comment or personal experience you want to share, write it down so you don't forget it but I think we'll let her go through her whole program uninterrupted so she covers everything and at the end we can have discussion, questions and comments. The program, just in case anybody doesn't know, which you do, is about the psychological impacts of hearing loss and I've been looking forward to this program for a long time because I think all of us are affected in some ways we're well aware of and in some ways that we're probably not. I don't know about you but when I have my low times or I get frustrated or grief stricken I tend to think, you know, why are you being such a big baby. Look at all these other people. And then I found out I'm not being a big baby all of us have these feelings so I know this is a program that'll do us a lot of good and I thank Esther for coming here and doing it. ESTHER KELLY: Thank you. Stay away for everybody being able to see. Get this together. Okay. My topic is not communication, the face me, don't shout. That's not today. The topic is, psychological or psycho social issues, whichever you choose to call it. And I'm not going to go through the grieving steps because you know when we have sudden hearing 6 loss we grieve just like a loss for anything but many in this room have had hearing loss all their life and never went through a grieving process, because they've just grown with their hearing loss. About half of you here have grown with it and learned from it but I find there's still some psychological issues that can be helped. Before I talk about the psychological issues, I don't go anywhere anymore before I give my three minute hearing loss 101because there might be someone in this room that doesn't understand just basic hearing loss. So I'm going to have to bend down each time. Briefly just so you know you're not alone here we are. Huge pie chart of people. This is late-deafened, those of us with cochlear implants, and this is the culturally deaf that knows sign language just in case some of you didn't know those statistics. 8 percent of all people with hearing loss can use sign language so that leaves the rest of us in this great big picture. We're not alone like so many of you. As janet said, you feel alone, get over it, we're not alone. So then I'm going to go past a couple of these. This is a 40 page power point and so I use this all day in a workshop and I'm just picking slides out. That's why we're sliding along and I will give you handouts of what I show at the end so you can take it with you. Okay. Hearing loss 101. Two kinds of hearing loss. Sensorineural hearing loss and conductive hearing loss. 20 percent of the people with hearing loss have conductive 7 hearing loss which is where there's something wrong with the bones or the ear drum or something that may be correctible with surgery. 80 percent plus of us have sensorineural hearing loss which is simply damage to the hair cells or what the audiologist says your nerves are damaged in your cochlea. Nerve damage. Hair cell damage. They're actually really hair cells, not nerves. They have nerve endings that go to the auditory nerve that goes to your brain. There's a cochlea with all these 30,000 hair cells. Your 30,000 hair cells are what the audiologist says is damaged when you have nerve damaged. If you had nerve damage you would never hear deaf deaf deaf. If you have hard of hearing damage it's deaf cell damage. So I want to correct that. 30,000 hair cells. Out here is a lot of high pitched sounds. This is high pitched sounds. This is low pitched sounds in the middle of your ears, and all of these hair cells are moving in hearing people. How many hearing people standing in the room. Okay. Got three hearing people back there. You're going like this and all these little hair cells are sending the sound to your auditory nerves to your brain. You woke up this morning, didn't think about hearing. You just did your business. All the rest of us thought we're going to the meeting, I hope they have CART. I can't hear. I have problems so all the rest of us psychologically are thinking, can we hear today? Okay. So that's where that is. Again, the three people in the back, 8 this is you. Beautiful hair cells all moving and wiggling and sending the sound to your brain. And now I'll show the rest of us. The majority of us. Here we are. The damage to our hair cells. This is very important going along with the psychological issues because how many in this room were ever said, you only hear when you want to or you're not trying or they hear my nephew but they don't hear my daughter. How many people experience that? All of us. All of us have been told some of that. This is the reason. This is hearing loss psychologically we have no control over this dependog where our damage is. The more damage, the less we understand. How many ever say, I hear it, I just can't understand it? There. Some of us with a milder hearing loss, we have enough that there's some good cells left. Not me but some of us, where we can understand better or they might not be quite as damaged. That's the purpose of those of you with hearing aids with your really good hearing aids that can be programmed, digital hearing aids can be programmed to try to make the sound going into your ear in that damaged sound, try to change the pitch to try to get it moving to where there's better sound. So that's the better of buying really good hearing aids to try and change that damage to somewhere else. When we don't understand somebody, especially on the telephone or something, it's simply because it's hitting the damage and sending unclear sound, and that's why when we say people don't shout 9 it's because shouting isn't fixing it. Shouting is just sending a louder, unclear sound, okay. And also, we have to remember that those of us with cochlear implants, how many have a cochlear implant here? Okay. Four of us. You probably know this, but there may be -- I run into many people that don't. The only reason people with a successful cochlear implant are hearing what they couldn't hear before, for seven years, I couldn't understand a man talking. Could not understand one man. I stopped talking to men. I did. Everybody laughs, but I did. I used to be the president of a group like this and I never talked to the men, and after I got my cochlear implant, a man stood up and said, I used to think Esther was a stuck up lady but I found out she's nice. She just couldn't hear me and never told me. So I wasn't doing it right. That was before and after my cochlear implant. So when we get enough damage you give up on some of those sounds. Well, anyway why do I hear men now? Men's voices are beautiful to me now, because all a cochlear implant is, is where they implant elect rods over this damage and cover it up and they must get those electrodes closer to the cochlea as possible. The closer to the cochlea the better you'll hear. Now we cover this up and that's why they can say you can never wear a hearing aid again. It's not for any reason except you cover where the hearing aid is sending to the crumby damage and we've covered it up and we're trying to access the perfect 10 hair cell endings in the wall of your cochlea trying to get that sound to go to -- that's why I hear men again. I had great cell endings or nerve endings if you want to call it that in the wall so when the electrodes were placed close it connects them and it sends to the auditory nerve the clear men's voices to my brain. That's cochlear implant 101, hearing aid 101. Keep it in mind for everything when you learn coping and communicating. It's not like glasses. There's nothing that can make you hear right again unless you have a really successful cochlear implant that can send really clear sendings to the wall, those nerve endings in the wall of your cochlea. So now to the psychological issues. Anybody have a comment or question on this? We'll keep it brief. No comment or question. Did everyone know this before? You don't have to raise your hand. It's just as important -- I'm giving you a hand out of this because you might know it but your family or friends accusing you of not trying or family and friends saying you're not hearing everything, you can show them the picture of this is why I'm not hearing everything and you shouting at me isn't going to make it any better and a picture is worth a thousand words. I remember I had a boss and I said I'm trying I just can't comprehend you. She didn't understand that because she saw me understanding someone else. I'm not going to spend time -- you'll get a hand out of this slide. We are different. Culturally deaf people have 11 different needs than the rest of us with hard of hearing, late-deafened people and you can read that for yourself and CART is so wonderful. We're so thankful we have CART today. Here we are. Other than those of you who have sudden hearing loss I have to tell you, I got a call from a man about three weeks ago and said my wife just was in the hospital for a month with meningitis. She's totally deaf. She came home totally deaf. She also has a foot amputated. So she's 37 with five children. Suddenly totally deaf in a week. He said she's been in this hospital a month. They've addressed her foot. They've addressed everything but not one nurse, doctor, professional talked about her sudden deafness. Not one person helped her in that hospital to know what happened or what to do about it. So he said she came home last night and he called me on the phone. On that morning, it was a Saturday morning, and he said, a social worker at the hospital just sent me an e-mail to give me your name so I could figure out what happened to my wife. They hadn't a clue. So I went there and I took those pictures I just showed you. If you never knew anything about hearing loss and suddenly you're deaf it's a pretty big shock, lots of grieving and everything going on. But they didn't even know what it was, and it was the medications that treated the meningitis that actually destroyed the hair cells like we saw in the picture, and made her deaf. So she's got a long way back. I'm hoping that a 12 cochlear implant would help her. I've had several people get cochlear implants and they're helped by that. But anyway she's facing emotional issues. Emotional issues happen to all of us. Each of you has your own story and I think some day we out to have story time because it would help each other understand each other's stories but I can't talk on psychological issues without giving my story because that's where I came along and helps you put yours in perspective. When I was a child I had next to no hearing in this ear and perfect hearing in this ear. I thought that was the way it was. All my life nobody addressed it and helped me figure out what to do with it. I was just this one eared kid trying to hear with this ear. I learned very early to make sure I was standing on the right of people and I did all the things adapting. Nobody told me. It just came natural to me. Sort of like those of you who had hearing loss all your life except I never knew I had hearing loss all my life until I was an adult. In my 30s this ear became a little hard of hearing and I was working programs in churches. I planned programs, started a Christian school and one day a hearing aid dispenser came and said Esther you need a hard of hearing. Well, that was like I thought I was doing a pretty good job. You know they say it takes seven years to address your hearing loss. Some of you in this room might have been having hearing loss for maybe seven years and just sort of getting by, getting by, 13 I thought I was doing a great job of hiding that. But when someone walks up and says it to you you think, wow, I must have been missing something somewhere. He said I don't want to sell you one. He was actually a hearing aid dispenser that went to the church. He said I'll give you one. My first hearing aid was given to me when I was thinking I could hide it so well. When you have a mild hearing loss and the damage is so little that's why that damage is so important in that picture when I talk, a hearing aid almost puts you back to pretty good hearing so I was back to my one eared self again I thought. And that went along for about 10 years. Kind of graduate up to a little stronger, a little stronger hearing aids. But I continued in my work. But then I got a really bad fever and sickness for about three weeks, and that was the on set of sudden hearing loss so I like to say I feel like at one time I was a hearing person so to speak. At one time I had a mild hearing loss then suddenly I had a drastic hearing loss in the space of eight months. I went from that little damage to just about all of it damaged so I couldn't understand men anymore. It was very quick so I know what it feels like psychologically. Me, I thought I was doing great. Suddenly I'm fired from a job because I can't answer the phone anymore. Some people will recognize that issue. I get lots of issues with work. Suddenly I haven't figured -- this was 1988. I'm old. Anyway it was a long time ago before we had 14 all the relay and all that stuff, and I wasn't deaf. I'm a hard of hearing hearing person hearing family, hearing friends, only person with hearing loss in my family. So none of them understood. My brother-in-law came to me and said Esther never give it up. I have to thank him for that because he's one of the few people that said never give up where other people are like oh, let me take care of you. That's the two things. Family and friends will do one of two things and some of you will recognize this if you have a sudden hearing loss or even a gradual one that gets worse. They're either going to say, oh, she doesn't try and sort of shove you away or say never mind a lot. Some of you recognize that. Or they'll smother you and I like to use smother and some of you won't recognize smother. Smother means, in those eight months I could hear men and suddenly I couldn't hear men anymore. They decided they had to do everything for me. Suddenly my family is saying Esther let us do this. Why don't you move in with me and I'll take care of you. Nothing happened to me except I can't hear. I'm still smart. My brain is still there but my family doesn't equate that. So you who have had hearing loss all your life won't experience that but some people like this woman I've just described she's going to go through a lot of smothering or a lot of rejection. I don't know which will happen. Her husband is wonderful. He'll probably smother. So what do we do with these things? I didn't hint, well, 15 there was no one telling me this was what was happening. All I knew was eight months ago I could hear when my hearing aid was off but it's better when it's on. Now I can hear nothing with my hearing aid on. My husband's words are just gone and then suddenly in that same period of time my husband died so now my husband was gone. My biggest supporter. My job was gone because they said you can't hear on a phone. We love your work. We would love to keep you but we can't pay someone to answer the phone and someone to help you with your hearing loss so they gave me a dinner, a goodbye dinner to be fired. So that was very nice but it didn't help me psychologically. It hurt. Never was I fired. Hurts to be fired. Hurts to be rejected what do I do? Smothering, my family comes along, okay Esther, move in with us, let us take care of you. Let us go to the lawyer with you because your husband just died. My husband, brother and sister-in-law we all troop into the lawyer. I sit down and said to the lawyer, I have a really bad hearing loss. You have to look at me and I can't hear well and you can write down what I don't understand and he was very nice lawyer who suddenly did and you guys that go to doctors, lawyers, and Indian chiefs will recognize this. He suddenly turned, looked at my family and never looked at me again. You recognize that one? Suddenly they're just going to talk to the hearing person. Can't hear? Okay. Very hurting. No one told me what to do about that. I did it 16 wrong. Psychologically I was hurt. We leave a half hour later now I'm already grieving -- eight months ago I could hear things. Now I have no husband and no hearing, grieving. My family is loving me and smothering which is good, I'm glad they love me but they made me feel dumb. They made me feel like I wasn't trying so we got in the car and they tell me if about five sentences or three minutes, I can't remember, what they discussed about me for a half hour. Anybody recognize that? Getting the short version? The shortened version of you. So now I got my shortened version about what we're going to do about my situation and I said to them, you're never coming again because I was upset. I felt frustrated and I went back a week later and I said no one's with me. You're going to have to look at me. You're going to have to talk to me. And he did and I like to tell this part of the story because he didn't mean it in a mean way. I actually met with him several times. He helped me a lot. He helped me understand my hearing loss finally. He said you know what Esther you put in words what people don't really ever verbalize and don't consciously think but subconsciously act on. He said there's nothing wrong with your brain. You just can't hear. And he said that to me in a loving way and we were friends and we hugged. So this is happening psychologically to many people, if not to you, your friends having hearing loss can never express that. I had another 17 woman with sudden hearing loss with an adult son called and said my mom's been crying all night. Come into the office. So in comes dad, mom and adult son. Kidney failure with high doses of antibiotics. Sudden deafness. Never had hearing loss. I typed hi, what's wrong, tell me about you. And I looked at her and she could talk fine and poured her heart out. Her words were, I feel invisible. She felt invisible because people would call and say, tell bobbie we're praying for her. So husband comes over and says, John called and they're praying for you. And she's sitting there going through this for a couple of weeks feeling like nobody wants to get near me anywhere. Psychologically, no one wants to help me. So here's what I told this -- I don't like to talk about problems without what to do to fix problems. Always want to fix. Don't want to discuss negative. The way to deal with this is, well, I told that husband of bobbie, I said next time someone calls and says tell bobbie we're praying for her, say come over and do it yourself. She needs people, even if they have to sit beside her and write to her, don't do it for -- do not just say -- just say come over and do it yourself. Then bobbie says I went to the doctor and I could read his lips and then he turned and I couldn't hear again and we go home and I had no idea what he said. And I said again, I said to the husband, here's the biggest key. He asked -- I was wrong to say my family shouldn't come again. Bring a trusted 18 family member especially for medical reasons. That's important. But now that husband says to the doctor, don't look at me, I can hear you, look at bobbie for every word so the hearing person is telling the doctor what to do. Instead of us saying, look at me I can't hear you and they do it for three minutes and look away again. Now you get your family member to help you and say, they're here, but look at me, look at my wife. She needs to see you even if she doesn't get every word. I'm the back up, I can hear you, but it is human nature psychologically for people talking to hard of hearing people if there's a hearing person in the room to not look at the hard of hearing person. It is nature for us to look at the hearing person. And I tell people that are care givers, people that work with children, even if you have a 10 year-old that has hearing loss and moms there, they deserve -- if I have a child in my office I tell the parents right off what I'm doing. I'll say, I'm not going to look at you when I talk because she'll catch some of what I say and you can hear me whether I look or not. If I didn't say that they'll think I'm a rude, stupid person because all of a sudden I'm talk tog this person and this hearing person came to be the smotherer or the care taker and I'm not giving them the courtesy to look at them. But that's not true. So I always explain first. I always say, now, I'm glad you're here today but because your mother, your child, whoever has hearing loss, I'm going to 19 look at them for every word because I know you can hear me whether I look at you or not. And that helps to reinforce us saying please look at me. Now, the hearing person is saying don't look at me, I hear you. So now you've got reinforcement. So yes family shouldn't smother. They should help. We don't want to reject help. We want the help but we want it in a better way. Does that make sense to you? Okay. I don't know, same thing. We know that psychologically we stopped going to movies but it's getting better. We have rear window captioning. Self esteem, what I just described, some of us in this room have lost a little self esteem. Not intentionally but we're frustrated so self esteem goes with all of this. Job, oh, my, I have stories for jobs that could go fill a book. Because I really struggle with jobs. Oh, I've got kids in college and no husband, no job, two years no job. Finally found a job, and the same kind of thing, how do people help us in very strange ways. The first part of the job I ended up working for apex which many of you know is the army has changed service. It closed a building 10 stories in Dallas that did accounting for the whole world. Anything that went in accounting for the army and air force they did the accounting in that building and a hearing aid dispenser contacted me and said Esther a lady that I sold hearing aids to is in personnel, she might hire you. After two years of getting no job interviews, I walked in there and said I heard 20 you have a job opening and this sweet woman hired me. Probably because I had hearing aids like her. Strange way of getting hiring. But I was in the door right. And the first two years went well because I didn't have a man supervisor. I could understand my supervisor's voice. All I had to do was trouble shoot who owes the government money on microfilm, microfish, computer, I researched all day. Then it was a great job for me. Then they added the phone. By the time I had VCO. Once I had CVO I added the phone to my job. Six floors, 100 desks. One cubby desk. Anyone with hearing loss doesn't want to work in a noisy environment with 100 desks and have to be on the phone and have to interact with people right. So every 25 desks had a supervisor and I had done two years of great work. They moved me to a different section. All of a sudden I'm back to struggling with psychological hearing loss. I have a boss that moved here from France. Can you all with hearing loss ever remember hearing French people talk? French people have a very distinct accent that isn't like -- accent mouths don't move the same with an accent as they do with English. I mean they say the same word but it sure doesn't look like that word on your lip so you're really in big trouble with accents when you have hearing loss, or depending on the pitch of the voice. Suppose if they didn't have an accent but while all those hair cells are damaged here and their voice is right there, that you're lost. You're 21 lost. But you don't know why you're lost, and this boss became my number 1 enemy, and she walked over to my desk, and she would give me instructions, and I'd say what did you say? I didn't understand that. And she would scream at the top of her lungs so 100 desks could look up and say you're not trying, listen to me. Now, where does that go with self esteem and a whole bunch of other stuff in here. The hearing world doesn't understand and at the time I didn't understand the concept to be able to say, well, your voice is in a pitch where I have damage, that's why I want you to remember that first part of today. If I had been able to show and say that to her, she might have had some understanding of why I could understand the first boss for two years. She truly when I looked back on it in hindsight, she really thought I wasn't trying because she never heard I had trouble for two years. Suddenly I'm not understanding anything she said so she just thought I wasn't trying. So in her defense, instead of saying they're all bad, in her defense, she really, truly thought I was not trying because she had observed that I had no problem in that other supervisor. So we have to put that all together psychologically. I just did a videotape on ways in the work place to not just -- you know, a lot of people are struggling in the work place, complaining, they don't try to help me, I need this, I need that, but my DVD that will be published at the end of the month and I'll be glad to give it all to you, 22 is showing where we have to do a little education or where we have to help ourselves in the right way to not just expect everybody to help us. There's a 2-way street here. So I actually did three DVDs. One is on the ADA. And that's a whole section with Randy turner from the state office. A second one is on hearing aids what to look for and that's with rose minnette from the state office and the third one is acting out. There's a person applying for a job. Do I tell them I have a hearing loss when I apply for a job or keep it a secret. What does the law say about that. What happens. So we're showing skits where people do it wrong and people do it right and then we have skits on a person who has not tried to make her own office helping herself. She had things where she couldn't see people's faces and showing how we have to help ourselves. It's lots of skits on that and I'll be happy to bring one for everybody. They're captioned. So anyway after weeks of being abused by the French lady I finally went to personnel and said get me out of this department and they said no. Some of you have experienced work problems and you've had people like that but for my success on this story they said no to me, but behind the scenes, I have no idea what happened but she never did it again. I'm sure they must have reprimanded her and she changed her ways. And we adjusted. Finally when she wanted me, she'd tap me on the shoulder, go into a private room on the side and we'd talk with the quiet and the one on 23 one and stuff we actually became friends. And she finally understood that I was really trying, but I had been able to show to her, look, your voice is hitting the damage maybe she would have understood it sooner. So work can be bad. I had another employee used to shoot rubber bands at me to get my attention. That hurt. I always joke that it hurt physically and psychologically. It hurts to be treated wrong. Safety issues. I have a little video I like to show where we have to address our safety issues. You know how we don't always hear a word. They rhyme and we hear the wrong word or maybe we hear part of a sentence and not the whole sentence and we might misunderstand someone when they say something. I'm sure everyone with hearing loss has done that. They've answered wrong to something that was said. I've done tons of that. The video that I have shows, and it says, what if I was in a bank, and some robbers came in with automatic weapons and said, everybody lie down on the floor and I'm going to shoot the first person that stands up, and all I hear is the word stand up. Could that be fatal? So safety issues, we need to be very, very conscious of safety issues. The other issues, like I flooded my bathroom. Anybody ever flooded anything? Am I the only one? Thank you. Okay. I flooded my bathroom by not hearing the water running. I've done them all. If you've done it, I've done it. So that's because I didn't hear it. Now with my cochlear implant, water sounds like Niagara 24 falls. I don't think that would happen now except if I have my hair wet and I can't wear it then I can flood again but I have flooded a bathroom. That's the only sound I don't like with my implant is water and I turn it off when I'm doing the dishes and stuff. It's the only sound I don't know why. To me it sounds like Niagara falls. Anyway so safety awareness, we need to address these issues in any way we can. And I have found a new little technology for care givers. Suppose I'm hard of hearing and I have to take care of my grand mother. I can't hear them. They have a reverse baby monitor with a camera too and you can carry it around and see them. It's like $70. You put the camera in the baby's room or sick person's room and you carry it around on your belt. If you have hearing aids on you can see the person. I'm hoping they add vibration to it. They don't have vibration yet but it's a neat gadget to help people in that situation because I know when I have my grand child stay over I'm always running over to see if I'm not missing something. It would be nice to have that camera. Anyway school, we have so many issues psychologically in schools. Even children, if you have worked with any children, I have issues with children psychologically in schools. Now they look back and know what I did wrong nobody ever told me I did anything wrong but I look back at my life and school and when I work with parents of school children now we have a huge issue here. As a hearing loss 25 group we could help parents. I had a mom called me and say I don't want anybody to know my second grader has hearing loss. Maybe if she learns lip reading we don't have to get hearing aids. That's dumb. So we had this long conversation on the phone and I said, you know, tell me more. Tell me more. So we talked for an hour. She wants to hide this child's hearing loss. What kind of message is she sending to her child. Then as we talked she said well she was pretty upset last week. She came home and she said the teacher told everybody to take out their map, m-a-p book, and I didn't have one, and she was all upset. Guess what. The teacher said take out your math book. And m-a-t-h. She heard it wrong. After the parent told me that, I said this is the example why your child need hearing aids too. Lip reading will not do the whole thing. She thought maybe she could lip read map and math better but map and math look the same. I'm saying it right now. That's why I spelled it. Map and math, it's not going to help this child at all. It needs to be addressed. You need lip reading but you have to have the amplification with it. So I have parents that need education. They're not catching on right away. By the end she said you're right. We need hearing aids. But she gave her own answer by that example but it was interesting to me that she didn't equate that but in my own life I do tell a hurting story because we're talking psychologically. Even if this might not help you you might be 26 able to help some young people some day so I'm giving all age examples. I look back, and I look now that I think I could have done so much better in school had my hearing loss in this ear been addressed. One-eared hearing is a problem. I'm still one-eared but I've lived with it all my life but one-eared problems in a class room, if the teacher is over there -- do you have only one-ear hearing or do you have two? >>: A little bit. One cochlear implant and a little bit of residual. ESTHER KELLY: You have the same problem I do. Where's the sound coming from. I do too. With one ear you have a directional problem sometimes. Well, evidently, when I was in grade school if the teacher is given a homework assignment and I didn't hear it I would ask the person next to me or look on their paper to get page number or something. This comes back to home. It's hard to tell this story even now. In fourth grade I had a terrible teacher. There are wonderful teachers in the world but this one I wish I could go back in the world and address her. She decided fourth grade was the year you're going to tell everybody about their personality and get all these kids into a wonderful personality right. She put an acronym on the board of something, four letters for each person in the room. And for two weeks everybody's wondering is she going to say I'm helpful. Is she going to say I'm smiley. I'm a hard worker. What's my acronym mean? Well, to 27 this day, it hurt. Nobody addressed my hearing loss and I was trying to find out what the page number was and what this was. Yes, I was. But she announced to the class that Esther needed to learn to mind her own business. She had MYOB was my acronym. Two weeks I couldn't figure that out. Now I know. It hurt. It was embarrassing, and she never equated it with hearing loss. Of course to her benefit she never heard I couldn't hear in this ear but looking back that's why issues of hearing loss -- one year of hearing loss, anything, we've got to address it more. Because I'm not the only person this is happening to. My second grader grand daughter came home and said mommy there's a little girl sitting next to me, she's new and has hearing aids on. She's in trouble every day. Her name is on the bad part of the board every day and she's not bad. She just can't hear. The little second grader figured out because she had a grand mom that can't hear. Teacher figured it out so my daughter-in-law went to the teacher and said would you like to have my mother-in-law come talk to you about hearing loss. Oh, no. These parents don't want to make it an issue. She's just not trying and that was the end of that child in second grade. I don't know where she is now but the teacher and the parent said she's not trying. Part of that issue I blame -- is there an audiologist here? I hope not. I blame it on the audiology and medical profession some. They get the hearing aids on these kids or adults and, of 28 course, you just spent $4,000 and, of course, those $4,000 hearing aids are helping. Trying to program to the better hair cells. But nobody told those parents there's limits. Nobody said, 6 feet is as close as I need to be to get real clear understanding with those hearing aids and if I'm going to go over here you won't understand it as well. So the teacher and the parents are expecting more of the child or the adult and saying, they're not trying hard enough. But do you know that singer holding their microphone up here and the singers with those million dollar stuff pull it away and you can't hear them? Well, how do we expect a hearing aid or a cochlear implant microphone to hear over here when you can't even have the singer's multimillion dollar equipment have it here unless he's got. Nobody will tell you a hearing aid has a limit of 6 feet for maximum great power. You all heard that before? Okay. 6 feet. The teachers in school need to know that. That's why we need FM systems and listening systems to bridge the gap and attach -- any of you using the system with this, it's bridging the gap of that 6 feet today. So they're not going to tell you that when you're buying this equipment. And it really applies to anything with a microphone. So that is why schools, adults in the workplace, if you have to go to meetings, you might want to go to DARS and ask them to get you an FM system so you can do the maximum in your job. There's nothing perfect but every little bit you do helps you. Every 29 little bit. So now these kids in the school, they don't know that. The college kids don't know it. And other issues psychologically is what's the first thing you do, even here, someone with really severe hearing loss that didn't buy hearing aids, we sit in the front. Sit in the front. Good. But do you know any teacher that doesn't walk around the room. I go to more business meetings where I went to the trouble -- went to one down town, a really big business meeting. Where is the speaker going to stand. Right there so boy did I get right there. Guess what, the person at the other end of the room never stopped talking the rest of the day. I'm like oh, no I did it again, you know, but in the schools and in the colleges they're not going to stand in front of you the whole time. They're going to turn around so we need to address those issues. Another thing, one eared again. I really think one eared issues are really big right now. They might stick a child. I had a complaint. A teenager had a cochlear implant and she said they make me sit like where our CART writer's writing and the door is next to her and my no ear hearing is to the door. She's in the front she'd be fine. Nobody thought address it even further and put them in the front where your microphone is the closest to the speaker or where you do it. So I try to teach parents this very important. If you have a child that has hearing loss don't just put them close. If one ear is better than the other, the minivan, 30 anywhere, if I'm in the minivan and my child has just one ear's amplification I'm not going to stick that out the window. I'm going to stick them on this side so that the amplification goes where the people in the minivan are hearing. People don't think about it and I even when I get in a car with a group of people I always want to sit on the right because my microphone will go to the people in the car. We have to address -- psychologically we have to address even those little every day issues because otherwise if they stick me over here I'll have to sit like this the whole rest of the trip because all the road noise is going into my microphone and I'm like, quiet. Okay. So you see, emotionally we're affected in many ways. And it makes us do many things. And my time is almost up so I'll make this very brief. I told her this is like a two hour talk that I'm putting into one. I feel all these emotions. Of course you can imagine -- I don't have to tell you why I feel frustrated. You just heard a lot of frustration right. We all have some anxious moments for different situations, anxiety is a problem. Impatience. I want to address impatience. I have to confess, I had impatient, emotionally and psychologically. When I gave this talk in one place a woman came up and said I sure wish my hearing husband heard you. I could never express to him what you just said, the impatience. Back in 1989 and I was struggling for a job my daughter did all my phone calls for 31 me. Couldn't hear on the phone. So, call the plumber. She'd hang up and say the plumber blah blah blah. And I'd say, did you ask them this? And she'd say oh, no, mom, I didn't think of that. Oh, well, why didn't you do that? I didn't mean to be impatient at her, but my frustration over where I was at in life. Because two years ago I could have done this myself. I take it out on others occasionally and I show impatience and I should not. But now that someone brings it to attention we can address that better and we can live with it better but I wasn't really mad she didn't ask the question. I was mad I couldn't handle that situation. I wanted to. Okay. So that's my impatience. And another one you probably haven't heard of before is guilt, and guilt is a little different slant on guilt. My guilt was back at AFIS I'd go in every morning, sit at my desk 10 hours a day, and I'd work like a beaver because I always said people with hearing loss make the best workers, and you know why? Because we don't hear the gossip. Is that true? We're not involved in the office gossip and politics and all that stuff. We just work and we're good at what we do and we concentrate. It's good. But I did something I didn't learn not to do until I learned all these things later. I felt sometimes like I was a problem. And here's where my problem was. I'd go in and I'd work, and a couple of friends, couple of girl's pitches were pretty good and I made friends but AFIS is like military. You don't sit 32 around chatting much anyway but lunch time is your chance to get together and they'd say Esther do you want to go to the cafeteria? The cafeteria has 100 people and it's music, loud and crazy. And I would always say no I'm reading a book. I'd just read my book. For five years I read a book. I just felt like that's where the guilt came in. I felt I was a problem. I worked as hard as they do. I'd be saying what did you say? What was that joke? I felt like I was a problem and I just chose not to eat lunch with them because I felt like I wouldn't get much out of it anyway because I felt like I was a problem, which I should not have felt. I'm just telling you, these are emotions that a lot of people with hearing loss are experiencing and no one is explaining it to them. Here's what I should have done and I never learned this until now -- let's back up. I gave them a bad message. I gave them a message that I don't care to be with you and you're not important. My book is more important than friendship. That's the message I was not realizing I was giving. What I should have said is, that cafeteria is really loud and I know I won't understand what you say when you can get out to a restaurant that's real quiet I'd love to go with you. I should have told them what was going on. I never told them what was going on, but in my heart not realizing it I was feeling I was a guilty problem. I was actually doing something nice for them. In a way I was thinking, because I'm not sitting there pulling down their 33 lunch because I know in that environment at the state I was in with my hearing aid, I couldn't understand men, I wasn't going to be much conversation there anyway so what do I do? Either withdraw or make them repeat themselves all the time. So that's where my guilt came in. Some of us don't feel all these things. It's not for everybody but there are many people that do and we do this. I would be shocked and I won't ask you, that all of us with hearing loss have not withdrawn from something. Have some of us withdrawn from something we used to like to do. The ones that stop the movie, you've withdrawn. The ones that can't stand that noise. I used to have a list of noisy restaurants I wouldn't go to. If I heard they were going there I'd just stay home. Fortunately now they don't bother me but I did have that list. So that's kind of psychological issues that we face. It's just a nut shell that I just gave you and now I open it for questions for the last couple of comments or comments. I would love someone to comment on something I said that either you experienced or some way you fixed it. >>: Will you be giving us this hand out, that page? ESTHER KELLY: Yes. >>: Myself, I was also in the fourth grade when I realized that I was talking to the teacher, and I never been tested for hearing loss in any school district in three states in the United States. And one of them was also here in Texas. 34 I was never tested. But my fourth grade teacher, when I just -- I can think back now and know that I spent time not knowing what was wrong. ESTHER KELLY: You had the same experience in fourth grade. That's right. Okay. Any other comments? Yes, ma'am. >>: One of the things that it seems like I'm dealing with right now because I'm not -- I mean, I have hearing loss but I'm still coping okay right now, but because they have told me to expect more, it's almost like this paralyzing fear of when it's going to happen and what am I going to do and, you know, right now my husband and I are looking at I need to go back to work eventually, but how do I prepare not knowing if and when more hearing loss is going to come? ESTHER KELLY: There is so much new technology and things to prepare for, depending on the type of work you end up choosing to go through, I have some awesome new technology and things. You won't know -- you can't really prepare -- psychologically you can, you can start thinking positive about I'm going to address it in the best way I can and don't worry about it. Until you know what job you're going to do you can't prepare like with technology and things like that. There are things you can do though to learn what to look for in the best hearing aid for that job and things like that. Really I wouldn't even worry about it though. My talk today isn't to say, we have trouble and we have to worry about it. 35 My talk is to say, look, I did things wrong but let's not do it wrong. Let's look at the picture and see how we can help it. This is just a little part of it. I'd be glad to help you any way psychologically with that in the future. >>: Esther, in addressing her, the same thing happened to me because every year they'd say, we need to increase the sound on this one. Then they'd increase it over here, and then they finally said, now we can help you, and I said -- I thought, what do you mean you can help me? You've been giving me a new hearing aid every other year, you increase the sound. Is that not helping me? And that's when she told -- my audiologist said the aids that I can give you at this time are not loud enough for your problem. Therefore, you are not a candidate for the implant. And I said I'm not going that way. And so she said, well, we will do, you know, we'll increase them again, and then you have to decide. I chose to go to college and learn ASL. I also got her to order me lip reading or speech reading now they call it so that I could study how to read lips and then I had to make up my mind that I could not deal with the cut of the public anymore because there are so many different accents -- ESTHER KELLY: You had to find something in your job -- a job that fit you. >>: So what I did was I went into computer software, and now I do data input only. I don't like my job. It pays fine. 36 I don't have a problem with it. But I enjoy being out with people. I can't do that anymore. But I can speech read perfect. I don't even have my aids on because of that. ESTHER KELLY: I don't know what speech reading she's using but you can get it at home, seeing speech.com and put it on your computer. It's about $75. It's interactive and you can put background noise like street sounds and parties and stuff and it has tests and all and you can do it for a long time and that would be good to get all the lip reading that you can and that's a good thing. I like it because you can self pace it, do it once a week or every week. That's a good program. >>: $75 a year? $75 unlimited? You said it costs $75. Is it per year? ESTHER KELLY: No it's an actual program you install in your computer. A one-time cost and it's a very good lip reading or speech reading. Seeing speech.com and they have people pop up, live people on your computer and they give phrases and sentences and you get to do all of that. That would be one thing you could be doing in this time while you're enjoying baby and whatever. And I do have some people that said I've always done customer service all my life and I've got the latest, most expensive hearing aids and I'm still going to do it. There comes a time we can't always do what we want to do. We have to say, sometimes we have to say what 37 would be another thing. I ended up in AFIS for those five years. Actually six years. From '90 to '96 when I got my cochlear implant is when I started the job I do now and started learning this, nobody ever told me. I wish people would talk to me years ago so I'd have more understanding. I was just mudling through. You all know more than I ever did when I was muddling through at that time. It was just awful. >>: I just want to say I know y'all probably don't get thanked enough but going back when you were talking about the fourth grade I grew up in a Catholic church where I went to school and the nuns were like, you know, didn't know, and they had the TVs, they didn't have the closed caption like they do today, and I can remember my mother transferring me to a public school where I had to learn to do speech reading and stuff, but, you know, we've come a long way and I wish I would have had it back then. You know, I think it's great you're doing what you're doing now. We have a long way to go yet. But it's making us aware how to help those, and personally I think sometimes that we need to get into these schools too because those teachers don't know how to help those kids. I remember in the fifth grade I had a teacher that my hearing aid was whistling so bad but I couldn't hear it and she said somebody has birds in their ears and it was so embarrassing. ESTHER KELLY: Probably a better ear mold would fix the problem and nobody would address it. I wish we had more 38 resources. When there's a problem, who can we ask. Your parents couldn't say -- they just assume that's what happens with hearing aids. It was probably a bad fitting ear mold that could have been fixed. Yes? >>: I had a question for you. It seems like Jerry and I from time to time run into somebody with hearing loss who gets kind of stuck in a negative emotion of one kind or another. We know one man who's just so angry and just expects nothing but bad things to happen and he's unable to take advantage of maybe the helps that might be there because he just keeps -- every time you meet this man he'll tell you the same story over and over again about how he lost his job. And it is tragic. It's horrible. But he needs to move on. and we heard from a lady this week whose husband has been struggling with hearing loss for a long time. He's worn out, depressed and has just quit. He wants no help from anybody and it seems there's a lot of anger involved there too. ESTHER KELLY: I'll give you all a hand out today. Not just a power point handout but hearing loss resource specialists, we're part of the department of rehab but we aren't the counsel that has money to buy you hearing aids but we're the educator, helper and the person. And here you have Karen in Fort Worth and me in Dallas. We're supposed to go 20 something counties. We mix each other up. We don't care who goes to who. That's what we are to do. You guys can take our 39 contact information and I have everyone in the state listed and I also have the deaf resource specialists for people that know sign language but the hearing loss resource specialist focus in on us and doing one on one they come to my office or I have sometimes support groups for that. I also have a job club where people struggling to either keep their job or find a job, I have them meet together and interact with each other and through them encouraging each other and all so our jobs are to do ways to help people with their psychological issues so we'll give you those two handouts before we leave. Is there any more comments before we're done? >>: The noisy restaurants, can you name them? ESTHER KELLY: Oh, you're going to hate me. All Mexican restaurants play loud music. And you all love Mexican food. Fortunately I don't so that's not an issue with me. No I can't name them. I just know if they have hard wood floors and no curt ans and they play loud music, every one is different and there are a couple of quiet Mexican restaurants but I'd say nine out of 10 are really my enemy. So I find Chinese restaurants are pretty quiet. Anybody ever heard of a loud Chinese restaurants. >>: PF changs. ESTHER KELLY: Well, most of them are quiet but you just have to feel it for yourself and there's nothing wrong with you saying to your family, that restaurant is so loud, would 40 you please go when I'm not with you, and go to a quieter one. They'll probably say sure, I never thought about it. Rather what do we do, go just like little puppies and sit there because we can't hear anything. But we never suggested to the family, I can't hear in this loud place. If they want to be with you they need to know how to be with you. >>: Tell the hostess when you go to the restaurant that you have a hearing loss and they can usually sit you in the corner back near the wall, a way from the kitchen. They can help you find a spot that's better suited for someone that has a hearing impairment. They know where the speakers are and they know where it gets loud and doesn't get loud and if you're really nice to the waitress or hostess when you go in they can work with you on that. ESTHER KELLY: I will ask them to turn down the music, and I say I'm only here for one hour so if you could just turn down the music for one hour. I don't just say, this is loud, turn it down. I give them a reason and ask for a period of time. And usually that isn't a problem. >>: And to assist her, what I do, if I'm not with my sons, is I will view the restaurant before they issue or take me to my table. And I do that very thing. I look around, where's the kitchen? Where's the bus area, and where is the wall. And then I will -- if they take me some place close to those I would, I said I would prefer to sit there. 41 ESTHER KELLY: I would like to have a whole meeting sometime on just how to handle situations and I have a form where we can each fill out some situations of where we want to discuss how better to handle them and help each other. >>: I was going to make a comment, and I think it's because part of me and my personality is I am not one that's afraid to ask for help and I have expectations because I have later in life hearing loss that, you know, there's wheelchair ramps and ADA requirements and all that stuff. This is a disability covered under ADA and businesses should be required to do it. And one of the things I have started doing is not to be embarrassed, and every single time I go to any event that there's a sound system, I will ask for an FM system. Now, the majority of the time they don't have it, but I have asked. And if we start asking as a community and they get multiple requests then they're going to realize people are going to start complaining. We're going to have ADA complaints. ESTHER KELLY: May I say, now that you might be working again sometime then you're going to do research on what's out there and start asking again. >>: But even like at a hotel, like we went to my daughter's cheer banquet and the hotel provided the FM system and I understood nothing during the whole program, but I asked them before the program if they would provide FM system, and 42 they didn't know what I was talking about but now they do. ESTHER KELLY: Well, good. That's the power point and this is the contact people for hearing loss research specialist. >>: Could I comment? She was talking about the deafness resource specialist. One of the things they do is accessibility. Not only on the job, conventions, conferences, seminars, staff meetings, it doesn't necessarily have to be job related. I was talking with someone last night, and they said, I went to radio shack and was looking for something in particular, and told him I had a hearing loss. And they just run him out of the store. They were so rude to him. We need to hear about those things. We call the headquarters. We don't go in there screaming ADA. But we call the top people at the headquarters so that people like Esther and myself can go in there and do training with the staff. So you guys need to report these things to us so we know where you're having problems so we can do the trainings out there. It's not only just the hospitals. It's anywhere you go. You have problems at a restaurant, you have problems in the churches. Hard to ask because they're not covered under ADA. But anything else report to Esther, the deafness specialist and we can work on educating. >>: Can we report good -- some place that we've gone to eat and the employees have been real nice and real 43 understanding. When you ordered the items, like maybe you eat here and they took the time to -- I went to (inaudible) on (inaudible) and the guy sat there and explained everything to me and he was real -- I didn't mind leaving him $3. ESTHER KELLY: Okay. I think our time is up. We can do more of this over a period of time but here I'll give this to you and thank you for letting me come. >>: Thank you so much Esther. (Applause). >>: A lot of good help which I know all of you enjoyed that too. It's time to party. We'll take a few minutes to get things set up for the shower. I know some of you are staying and some of you are going. We'll tally up the votes for September and I think I have all of you on the e-mail distribution list and I'll let you know how it comes out. You know who tam ra is now and she's the lady we're having shower for. If you want to stick around we're having cake and punch. Thank you for coming. We'll see you in September or October. Before we meet at TCC I'll send you maps and driver directions and little hints about exactly how to find the building and room. Anybody have any questions before we move on? Okay. Thanks. 23 24 25