Voiceover: Cochlear Implant Basics is a site for candidates, recipients, and their family and friends. If you or a loved one is profoundly hard of hearing, newly deaf, or have experienced sudden hearing loss, we are here to share our stories, and tell how receiving a cochlear implant can be a life-changing event. This site is not medical advice, nor is it brand-specific.

Voiceover: Within these podcasts and videos, you will meet recipients who faced hearing loss situations and hearing aids could no longer provide comprehension of speech or music. They share the stories of how they lost their hearing, their struggles with growing isolation from their family and friends, their inability to compete in the world of business, their difficulties of navigating air travel without hearing, how the joy of music disappeared, and the panic of not being able to use a telephone to contact 9-1-1 to get aid for a loved one. They will talk about their fears and the reason procrastinated to get a cochlear implant, and the reasons they moved forward. How receiving a cochlear implant changed their lives and the lives of those who surround them. You will meet audiologists and surgeons, and those who support the deaf and hard-of-hearing communities. Welcome to Cochlear Implant Basics. Reminder. Cochlear Implant Basics is not offering medical advice. Please consult your own health care provider.

Richard: My guest today is Vinell. Vinell has a profound hearing loss with a long period of decline. Eventually, her hearing loss became so severe she had to give up her career which she loved as legal secretary. Her story is compelling and frightening at times. She relates her inability to contact 9-1-1 because she could not hear on a phone. She is qualified for cochlear implants the time of this interview, but she has delayed it for reasons that she talks about. She has not chosen the company she will use when she is ready. Like many cochlear implants candidates, the choice can be overwhelming. Her story presents the view of a qualified cochlear implant candidate and the issues she has confronted. This is her story.

Richard: So I just [inaudible 00:02:24] to know a little bit about your hearing loss, when you lost it, when you noticed you had a hearing loss. Tell me a little bit about that. I noticed I had a hearing loss when I was about 36 years old. I was told by a couple people that I didn’t say good morning to them because I had a job where I work one-on-one at the time for an eye doctor. So then I moved to places at that point, and I started having ringing in my ears very bad. So I went to the doctor and they did a hearing test, and they could not believe that my hearing was so bad. They recommended hearing aids at that point. I went to the first audiologist and got hearing aids and it really didn’t help me very much.

Richard: When you got the hearing aid, what did you experience?

Vinell: I just heard a lot of garble. It just wasn’t clear, nothing was clear. I could hear better without them, and I couldn’t hear on the phone at all. I had to take them off to barely be able to hear on the phone. So then I went to a different audiologist that I had come to the Hearing Loss Association and I met [Flo Menis 00:03:35], and she said definitely you need to go to a different doctor. So I did. And he really tried to help. He set me up with nice phones in my office, I worked for an attorney at the time, and it just did not help a lot.

Richard: Talk about that. You were working for an attorney, that was a job I believe you loved very much, and you start to lose your hearing. What was happening at the time in terms of your job?

Vinell: Well, I started working for an attorney in 2002, and this was about 2006 that I kept experiencing problems with hearing. The attorney actually would answer a lot of the phone calls for me because I could not take them.

Richard: How’d you feel about that?

Vinell: It was terrible. It was just terrible. But I was lucky because I’d worked for him for 18 years all together and he would rather help me then lose me I guess. So at this point, the hearing was so bad that I couldn’t hear his dictation. It was getting pretty bad.

Richard: So he called you in his office and tried dictate something to you, and can you describe a little bit what happened on those occasions.

Vinell: Well, at this point he’s like, “You know, we’re going to have to do something because this is taking up a lot of time for you.” So I went to the other audiologist that Flo had recommended, and they had gotten me set up with the Com Pilot and all that which helped out a lot at this point. I was barely able to cope at this point. So we got the new phone and had everything set up, but still wasn’t good enough to get by. This was around 2006. Well, my attorney passed away suddenly, had a heart attack right in front of me. At this point, I’m a legal secretary and I cannot continue to be a legal secretary because I cannot hear. I cannot answer the phone and a couple the attorneys called and asked, “Can you come and work for me now?” I turned them down without even telling them why.

Richard: That’s very interesting. Why didn’t you tell them that [crosstalk 00:05:53].

Vinell: I just knew I couldn’t do it. At this point I wasn’t familiar with how to handle my hearing loss. I felt alone at this point. I just kind of withdrew and went into a plumbing company where I didn’t have to answer the phone, I didn’t have to deal with the public. I could have a one-on-one world.

Richard: And you’re still there at this point.

Vinell: Yes. So 2009, I actually… I decided I would purchase the plumbing company and I would get my license and become a plumber, because I didn’t have to hear everything.

Richard: Who deals with the public in your company? If you have a problem hearing, there must a way you’re compensating by having somebody take the phone. Is there-

Vinell: Yes, and in my business, I have really a big disadvantage because as a small company with only my son and myself, he does the work in the fields, and I can’t answer the phones. So it’s really put me into a real bad disadvantage of not being able to really work in my own company with just hearing aids.

Richard: Okay. Now if you have that compensation, you a man in the field, you can’t answer the phones, what’s the future hold for you?

Vinell: It’s hard. It’s very hard.

Richard: You have to run three times harder to get the same thing done.

Vinell: Yes. Yes.

Richard: And you’ve got your audiologist since you’ve been here. What’s your prognosis now? You’ve seen your audiograms, what kind of hearing do you have left.

Vinell: I just had the test a week ago and found that one ear is almost completely no hearing left. The other one’s about 30%. So I have been recommended by two doctors to get the cochlear implant.

Richard: That’s interesting. Now my question is, we’ve had conversations before about this but it was a long time ago. And your feelings about cochlear implants back then where you’re ready, and you may not be ready today, but I’d like you to talk about what you think the pros and the cons are of getting a cochlear implant at this point.

Vinell: Well I definitely that the cochlear implant is a great technology. I think that from my experience in the Hearing Loss Association, a lot of my friends and the board members have the cochlear implant. I am just at this point definitely undecisive. I’m not ready to go there yet.

Richard: Is there a reason why or bunch of reasons why?

Vinell: There’s a lot of reasons why. If you ask me today, it’s because I feel like I do not have the time to take to do it. I did decide to do it in November, I went and had all the tests, got qualified, set up the surgery, and had a small car accident that affected the right side of my head, and the doctor wouldn’t do the surgery at that point. So I was like, “Is this just telling me not to do it yet.” I held it off, and now I’m just not ready.

Richard: Okay, that makes sense. You have a young child and have medical emergencies. How do you feel about not being able to grab a phone and make a call or talk to the doctors yourself? How do you deal with that.

Vinell: It is devastating. It is devastating. My only son was in ICU for three months and you could not get any information unless you called, and I was unable to do that.

Richard: What did you do?

Vinell: I had to depend on someone else to make the call, to talk to them, and that doesn’t seem personable. It’s really heartbreaking to be able to get secondhand information about your son or anyone in an emergency situation. We are not even able to call 9-1-1 and be able to hear on a phone, and when they start asking you questions and you can’t answer them, it’s really devastating.

Richard: How would you handle it if you need to make a 9-1-1 call. Let’s say you’re home alone, somebody trying to break-in, what do you do to communicate mostly?

Vinell: Mostly e-mail or text.

Richard: So you can’t take a phone call.

Vinell: At one point I had to make a 9-1-1 call.

Richard: What happens there.

Vinell: And I called 9-1-1 and they kept asking me questions and I kept telling them the situation, and they still kept asking me questions.

Richard: And did you tell them you were deaf and you couldn’t hear them?

Vinell: I told them yes. I said, “Listen, I’m hard-of-hearing, I am not understanding your questions, this is where I live, and I need a policeman now,” and she just kept asking me questions. And I screamed louder, “I cannot understand what you’re saying, I need someone here now!” And finally, she just kept talking to me.

Richard: And what happened in the end? Did they send anybody?

Vinell: They just showed up and in person I could talk to them.

Richard: In other words, you wasted time because-

Vinell: [crosstalk 00:11:21] I could not hear.

Richard: Oh my goodness. I need to go back a few steps. You were in your 30s when you finally got a hearing aid and realized you had the hearing loss. Do you have any siblings or anybody in your family with hearing loss too?

Vinell: My mother has hearing loss and there are six children, and three out of six have the same hearing loss that I-

Richard: So, genetic component to it. What kind of hearing aid are you using now?

Vinell: I’m using a Phonak.

Richard: Do you get good results with it?

Vinell: I am a lot better with the hearing aid than I am not. And without my Icom that I normally use, I cannot answer the phone at all. I cannot hear anything. With the Com Pilot, I’m able to make a familiar voice. I think when you get a severe hearing loss like we have, we learn to hear some things and some voices.

Richard: Well okay. When you’re 30 you lose your hearing. Did you being isolated from your family or your friends? I know you told me about your business side, what about your family side? What happened there?

Vinell: Well, my mom lived out of town and of course I’m the only family member that had moved from home. And yes, I could not talk to them on the phone like I like to, and my mom and dad was getting older. It hurt that you couldn’t even talk to them on the phone. So yes, it was devastating. You feel really isolated away from your family. But with my job, we had meetings and met with the judges with the judicial system. I couldn’t do it because I couldn’t hear in a crowded room. I couldn’t hear in meetings. So I just did not go to them. So I got isolated in my work also.

Richard: What about now, because now you’re using hearing aids and you’re about to go to a meeting with about 30 or 40 people. How do you deal with hearing in that situation now?

Vinell: Well once I got with the Hearing Loss Association and I learned a lot of techniques, and I learned to be proactive and tell a lot of people that I have a hearing loss. “Look at me, talk directly to my face,” things like that. I learned to fill in a lot. So upset all the time, because before you just feel like no one understands you. And also having hearing loss, I feel that a lot of us felt like people thought we were dumb instead of just hearing loss, because the way we look at people and we may answer you wrong. It’s really really a tough world out there.

Richard: It’s a tough world all right. After the American Disabilities Act passed, was anything there helpful to you in your life in terms of business or travel or getting around? Was anything specific under the American Disabilities Acts that you’ve used or that you’re aware of?

Vinell: I’ve used actually used a few. The airport has been really devastating. I’ve missed flights before because they’ve called my name when they move the gate. But now I actually go to the desk and I tell them, “I have a hearing disability. If you do move the gate or any changes to my flight, come directly to me.” So they have been very helpful in that. The last place I worked, they did supply me with all the special phones. Any hearing device I needed, they supplied it for me. So yes, I’ve used a few.

Richard: So like your boss, and me, paralegal was very very supportive. So are you a very lucky?

Vinell: They were supportive, but it still didn’t get me through.

Richard: Okay. Do you listen to music anymore or is music too difficult?

Vinell: I cannot listen to music and that is very devastating.

Richard: You miss it.

Vinell: I miss it horribly.

Richard: But you can’t hear it.

Vinell: I cannot.

Richard: All right. You’re on the bench still about a cochlear implant, I understand that. Is there an event that would make you change your mind and get a cochlear implant tomorrow, or is there something you’re waiting for? I’m trying more to find out more about your feelings about them because a lot of people are in your situation, and I want to share how you feel. If you would go ahead and do it tomorrow if something came along you needed.

Vinell: I don’t know how to answer that for sure. If I knew that I could get through the whole process and get to the next level and be able to hear, yes I would definitely decide for the cochlear implant.

Richard: How would you have doubts though?

Vinell: My doubts are, and I know this sounds ridiculous, but my life is very busy with family, with sickness. I just feel like I am not mentally ready to go through that process.

Richard: That makes a lot of sense. That makes a lot of sense because no one should be doing this unless they’re a 100% into it.

Vinell: Exactly. Just for instance, I mean I don’t want to put my personal life out, but when I scheduled to have the cochlear implant, I was ready. I thought I had the time. I’ve set everything aside, I’m going to do this because I really feel I need to. That was in November I was supposed to have the cochlear. I lost my mother in November, then of course my son got sick in December and was in the hospital for three months, I lost my dad in March. So I feel that I would not have had the time to take for that process and it would have been devastating to me. Now everything’s coming around and getting to be more calmer in my life, and I am reconsidering the option.

Richard: Because it does take time for rehabilitation. It does take time to commit. There’s no question. So then your case fate stepped in.

Vinell: [crosstalk 00:17:48] Yes. I think you have to mentally be ready for the cochlear. You have to set your mind and your time to do what is needed, to get through the process, to make it work properly.

Richard: My last question to you was this. If you had a cochlear implant and your hearing came back to a usable level, is there something you would do differently right now in terms of your business, your family? Have you ever thought about it?

Vinell: Everything.

Richard: Everything’s a big word. Could you [crosstalk 00:18:21] something you’d specifically tell us?

Vinell: It definitely would. If could hear today, it would change my world.

Richard: Is there something specific that you could tell?

Vinell: Specific. I think specifically I would be able to get my business back on track and be able to get back into the workforce.

Richard: That’s great. I thank you for your time.

Vinell: Thank you and you’re welcome.