Voiceover: Cochlear implant basics is a site for candidates, recipients and their families 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 a brand specific. 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 911 to get aid for a loved one. They will talk about their fears and the reason they 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.

Voiceover: 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 healthcare provider.

Richard: My guest today is Chris. Chris experienced a sudden hearing loss in one ear when she was 32 and then a progressive hearing loss on the other side. Eventually, she had to leave a very good job when she realized she could no longer function. She talks about how she came to the decision to leave and her new career path. Her hearing journey is filled with obstacles and pitfalls, bad advice and lack of knowledge about cochlear implants from her doctors. Eventually, she found the help she needed and receive a cochlear implant. Today, she is bimodal with a hearing aid on one side and Cochlear Kanso processor on the other. I started by asking her about the moment she knew she had a hearing problem. This is her story.

Chris: I thought it was due to ear wax and ignored it, disregarded it, thought it would go away, but eventually, I went to see just an MD who referred me to otolaryngologist and they didn’t know what had caused it, an unknown origin one-sided hearing loss. Eventually, when it continued to get worse and involved vertigo balance issues over time, I had a lot of tests where they suspected a brain tumor, any number of causes. Years later, it was diagnosed as autoimmune inner ear disease. By that time, I had almost no hearing in one ear, couldn’t be helped by a hearing aid and was given a hearing aid for the other ear. That was more than 20 years ago. I’ve worn every type of hearing aid, completely in the canal, little tiny ones. Now, I have the most powerful type over the ear in one ear, but I was still not hearing words. No speech comprehension because it was a progressive condition.

Chris: Some people with autoimmune inner ear disease lose all hearing overnight. Mine was gradual progressive to the point where I’ve had severe to profound loss in both ears. At that point, I finally had the nerve to have a cochlear implant. Now, I can hear very well out of that ear and it get by with the other ear.

Richard: “Get by,” meaning what?

Chris: Kind of-

Richard: Do you comprehend words in the other ear?

Chris: Yeah. The two work together very well. The ear with the hearing aid, now, is such a good hearing aid that I can make telephone calls with Bluetooth, much the same as the N7 Cochlear implant. I have Bluetooth capability-

Richard: Which one do you prefer when you’re on the phone?

Chris: Well, I have no Bluetooth with this ear because it’s a Kanso processor.

Richard: Right.

Chris: I’m able to talk on the phone with this ear.

Richard: When you have the autoimmune disease, it was not stress-related. In other word, did you-

Chris: It’s hard to say. They don’t really know, but it was diagnosed with a blood test.

Richard: Okay. You have a hearing loss. When you were in school you were functioning fine. Everything happened after you’re out of school.

Chris: Yeah. I was okay until that day when I was 32 years old. Just working-

Richard: Where are you working at the time?

Chris: Back in those days, I was in Washington, D.C. I was a sales marketing rep for a cruise line. I did that for numerous years. I worked for hotel chains. Mostly, in the cruise industry, travel agencies, doing sales and marketing work. That led to doing cruises for nonprofit groups. Most people are familiar with cruises, where your university or museum has a group and if fundraising office likes to have some of their top donors travel and bond with one another and with the organization. I began doing that type of cruise in Washington, D.C. for the National Symphony Orchestra, other organizations, the Kennedy Center for the Performing Arts. They were one of our best clients. They ultimately hired me to work in special events and fundraising.

Richard: Let me ask you a question. You noticed your hearing is gone or deteriorating. Talk to me a little bit about how it affected your career. Was there a particular day when you came to the realization you had a problem? That’s what I’d like to know about.

Chris: Yes. When I was doing fundraising at the Kennedy Center, I had gotten a hearing aid. I was getting a lot okay. If I called on a client, I had to be sure that I could see their face. I realized, now, I was reading lips, learning unconsciously, but as I was promoted in the organization, I started being in charge of major gifts, endowment and plan giving donors. Major gifts are people who give the Kennedy Center $100,000 a year. It’s really important to hear every word they say because you’re having lunch. When you have hearing loss in one ear, you’re always trying to get the right chair on the right side so you can hear the person you’re talking to. If he gets stuck with the deaf ear, you’re going to have to keep turning and reading their lips, but I got by.

Chris: However, the Kennedy Center is an enormous cavernous building. We began doing these small luncheons and dinner parties. When they were in rooms with the low ceiling, no problem. The carpeting, the acoustics were okay, but we started using spaces that had enormous ceilings. One night, I was sitting there and I just realized I could not hear a word this man was saying even if I looked at him. Of course, there’s somebody on the other side. I had to be able to talk to both of these people.

Richard: How did you feel about it?

Chris: Panic, panic stricken. I really thought I cannot do this job anymore. I’m doomed. This was 20 years ago and cochlear implants were not really in common use. My otolaryngologist office essentially said, “There’s nothing we can do for you.”

Richard: Did you look into any devices that could compensate or overwork with-

Chris: No, because I had been told that the deaf ear, there was nothing. I only got by with one inadequate hearing aid at that point.

Richard: Can you talk about the telephone? How did you deal with the phone?

Chris: I only use the one ear with the hearing aid. Again, it was gradual and incremental. We had a pretty good phone system. I could understand people on the phone.

Richard: How long a period from the time you started losing the hearing to when the phone wouldn’t work for you anymore?

Chris: Oh gosh, 20 years. Losing the phone really happened big time about 10 years ago. I just finally had to have my husband talk on the phone. What happened to my career is, really, that it was a very stressful environment. The goal setting was intense in any fundraising office. If it’s any good, you are expected to produce X million dollars a year in gifts. I had my people, my targets. I found new donors. I was doing pretty well, but then I would get in those situations that I described and that was scary. I had to just-

Richard: You had supervisors over you on, I’m sure. You have people over your-

Chris: Yeah. Yeah. Right.

Richard: How did they approach your hearing loss? What happened?

Chris: I think I was so good at faking it. That they weren’t really aware that I had such a severe loss because you compensate in so many ways. You don’t get yourself into that kind of situation.

Richard: Talk a little bit more about compensation.

Chris: Well, as I described, you try to always sit in the right place. You avoid certain situations. If you know that this a bad room or it’s a huge crowd and you try to bluff your way through and say things like “Well, I’m sure everybody’s having trouble today hearing in here, right?” People are like “Oh yeah, it’s so hard in this crowd. I understand.” Then you’re like … I’ve got a free pass to have to say, “Repeat that to me. What did you say?” Inside, you’re like “Oh my gosh.”

Richard: Well, your supervisor support it because you’re reaching your goal. Did you come to your own realization it was time to get out or did somebody come to you and say you’re not?

Chris: Nobody ever came to me. It was me saying, “I can only keep faking for so long.” Washington, D.C., that world … the people we were dealing with were cabinet officials, famous writers, Alan Greenspan and his wife, Andrea Mitchell. These were the people who came to our dinner parties. I had a staff and I had them do a lot of the … “I need you at the door to catch the name of the person who came in.”

Richard: That’s confrontational.

Chris: Yeah, but there were also times where they weren’t going to be allowed into an event. It was me standing there having to say to the chairman of the center, “Paul Newman is coming in.” Now, I know who Paul Newman is. That was okay, but if it’s someone who says, “I’m my own show.” They’re a mumbler. Boy, that’s scary. Sometimes the chairman would be, “Oh, Fred, you’re here.” I would be, “Whew.” I knew that the faking was only going to go so far for so long.

Richard: Have you seen people who have a hearing loss in your situation do a lot of faking like that?

Chris: Oh, sure. Absolutely positive. Because nobody wants to be the one in the room with all the top managers in your department and say, “I have a hearing loss, so you guys are going to have to look at me and not all talk at once.” Now, you can try that. There’s nothing wrong with being upfront, but in a competitive environment, you don’t want to be the guy who’s the weak link. You don’t want to be the one who has to make other people change their mode just for you, so you don’t ask. Or if you do and your friends understand, they work with you. They forget.

Richard: Talk about-

Chris: The meeting goes on.

Richard: Talk about your friends who were losing a hearing and talk about supportive. Were friends supportive of what was going on? Did anybody disappear and say, “I can’t deal with this”?

Chris: I don’t know. Maybe. What happened is, we decided to leave Washington and move to the Caribbean because my husband had been very ill. Luckily, he survived stage three cancer, but he thought, “Life is short. I’m going to retire young.” I said, “I support you 100%. This is a stressful place. We’ll get more money next year. In the year after, we’ll both get more money in our jobs, but what does it matter if we don’t have a quality life?” I was ready to check out of that stressful environment because hearing loss is stressful when you’re covering and coping, but it’s also exhausting to try and hear people.

Richard: Talk about how exhausting.

Chris: Yeah.

Richard: Talk about how.

Chris: Anybody who is struggling at work, in social events, family, you’re always struggling to understand or to keep asking. I would joke with my husband and say, “You’re talking to the refrigerator, I’m over here. You need to face me when you talk to me.” You’re always fighting to be able to understand. It is exhausting. You take naps if you can.

Richard: Yes. Now, your husband … obviously, spouses are very important issue with people who have a hearing loss. Can you tell me a little bit how he cope with it?

Chris: Well, he was terrific. He will always be a terrific person. In the last 10 years, before I got a cochlear implant and a better hearing aid, I would make him make all the phone calls. I can’t talk on the phone. I always gave his phone number out. I had a cell phone number, but I only had it for emergencies. If I had to yell on the phone, “Our house is burning down. Come home.” I didn’t really get calls on that line or I would have to hand it to him.

Richard: Since you had your cochlear implant, do you still do that?

Chris: No.

Richard: You do your own.

Chris: No. The Bluetooth hearing aid that I have now is so far better than any possible hearing aid I’ve ever-

Richard: What hearing aid are you using now?

Chris: It’s ReSound. It was a top of the line compatible with Cochlear America’s products. If I were to use a TV streamer or a handheld Mini Mic, they work together.

Richard: They do work either.

Chris: Yes. My husband did the phone calls. He is just a person who … I think looking back, he probably would say, “I don’t think Chris got what you were saying,” and help me get people to repeat things.

Richard: If you were in a very social environment in your work when you had the hearing loss, did that drift away a bit or did you find yourself isolating yourself a little more?

Chris: Yes, to some extent. When we moved to the Caribbean, we realized that this was the island of Saint Croix. It was a very social environment. We joined the yacht club. We would go to these dinner parties. It’s like Florida with the tile floors and the echoing of sound. However, a lot of socializing in the Caribbean is outside, outdoor restaurants. It’s a lot easier to hear in that kind of environment. I made friends there. However, some of them were old, old friends who had moved there.

Chris: I had built in community and there were friends. They understood if I had to say, “I didn’t get what you all were talking about. Go back and tell me who, who are we talking about?” They would stick with me, but it’s very different to try and meet new people. They don’t understand and you don’t want to, again, be the one who says, “Oh, you have to help here if you want to be my friend.” Again, I was compensating by reading lips. I realized that in my work and everything.

Richard: How long were you in the Caribbean?

Chris: I lived there about eight years.

Richard: Once you got your cochlear implant just a few years ago, did that change how you approach people?

Chris: Oh, yes. It’s night and day.

Richard: Talk about that a bit.

Chris: Well, in the Caribbean, I started easing away from situations like work situations into working on my own, independently. I have been a writer, an editor working out of my home at my computer, doing everything by email and that is a real great compensation. Email is God’s gift to deaf People. We moved back up from the Caribbean and I continued that work. I’d never made new friends, where we lived in North Carolina. We lived there seven years, eight years. I had one friend because I was isolating myself by my career choice. I had relatives there. I saw them, did not make friends. Then forward to getting a cochlear implant, which has only been not quite two years, now, I don’t hesitate to talk to anybody. It’s a whole new life. I’m like everybody else now. That’s the bottom line.

Richard: Do you have any regrets about getting a cochlear implant?

Chris: Not really. I almost got one back in 2011 and then waited six years. Probably, I should’ve done it sooner, but on the other hand, when I moved to Sarasota, I had found the quality of the healthcare and the whole community of people, surgeons, audiologist who specialize in cochlear implant rehab, other people, the Hearing Loss Association. It’s been such a strong support group.

Richard: Tell me a little bit why you hesitated because it’s not an uncommon thing for people to hesitate. How about your experience?

Chris: Well, first of all, one of my ear doctors said to me, “Oh, you don’t want a cochlear implant. It is very artificial and robotic hearing. That would only be your last resort.” I believed this guy. He’s an authority figure. Like “Oh, okay. Okay. Well, I’m losing my hearing every year, but that doesn’t sound like an option.” Then another in North Carolina, ear doctor, says, “I don’t think a cochlear implant is something you need.” I really dug my heels in. Meanwhile, I had gone to National HLAA conference and gathered all the material from the manufacturers. I was scared. I was scared of the surgery.

Chris: These two doctors saying, “No, no.” That gave me the reason to procrastinate and convince myself, “Well, they must be right.” Even though I’ve met all these people who said, “Oh, I wish I had never delayed.” Then my big procrastination along with the fear was the misconception that, “Get it done and technology moves on and there you are. You’re stuck with the 2011.”

Richard: That didn’t turn out to be true.

Chris: No. I had to go to a seminar where a Cochlear rep stood up there and brought home the point that, “The great thing here is, you have this little gadget and we can reprogram that and we can reprogram the device inside your inner ear and you then get the benefit of the ongoing technology.” That point had never reached me before.

Richard: Well, how did you make your choice for Cochlear?

Chris: That was really hard. I had a friend who had one of the other manufacturers. Then I had a new friend here who had another one different. I didn’t really know anybody who had a Cochlear brand implant, but I was convinced that they had the longest track record. The most people all over the world with that much success, thousands and thousands of people compared to much smaller numbers by the other two manufacturers. That gave me a confidence level.

Richard: You basically had single-sided deafness. Was there any discussion about the success of a single-sided deafness versus bilateral? What came up?

Chris: I talked to the surgeon about which ear he thought he would do. He felt the deaf ear was the one to go with, even though it had been 20 years since I had had any kind of good hearing out of that ear. He went with the worst one because I still have very borderline under Medicare. Medicare once below 40% speech comprehension in the best dated conditions in both ears and this year was borderline. The decision, really, was go with the worst one and that turned out to be the right decision.

Richard: Talk to me about music a little bit. What’s your experience with it now?

Chris: Unlike a lot of people, music hasn’t been a huge part of my world since the teenage years when you knew every single song, you knew every word. However, then, when I worked at the Kennedy Center, I would go and listen to the National Symphony Orchestra because I had free tickets anytime I wanted to go. I did a lot of their fundraising. I could go into an empty auditorium and sit there and hear Pavarotti rehearsing with National Symphony Orchestra. Just me and this rehearsal. Back then, music was important. The conductor was Rostropovich, world’s greatest cellist when he was alive, really. I can remember just being riveted by his music. I think what happened is, when we left and went to the Caribbean, there were no performances. There were no concert halls. I stopped going to the movies because it was too hard to understand.

Chris: I didn’t realize what was happening and that was that music had become very tinny. I still kind of got it, but it sounded off key, relay worked. I didn’t really realize that, I guess, until we came back to the US. I just avoided music.

Richard: What about today?

Chris: It is coming back. One of the interesting things to me is that it’s almost two years since I had my implant, but the curve continues to improve. One way I know this is that one of my favorite things was always to listen to CBS Sunday morning with the opening trumpet solo by Wynton Marsalis. It just sounded awful. I knew what it’s supposed to sound like and that was not it. This sounded off key and weird. Did they just change octaves? What’s going on here? Since I had my cochlear implant, it’s kind of my little bellwether, my little checkpoint. On Sunday morning, I listened to that every week. It’s now sanding pretty normal. I’m getting my musical hearing back.

Richard: Travel now is better or worse. You can hear. Can you tell me a little bit about travel because I really love it?

Chris: Yeah. Really, one of the tipping points for getting a cochlear implant was, I went on a solo trip up to Kentucky to go to an alumni board meeting. Long story, but there was a blizzard. We’re riding along on the airplane and there’s an announcement. If you’re hearing impaired, you hear that as [inaudible 00:24:57] Knoxville. You’re like “Knoxville?” I’m looking around and asked this person because everyone is now grumping and like “Oh, no.” They’re pulling out their phones. I said, “What about Knoxville?” The woman said, “We’re going to land there because there’s a blizzard in Lexington and they don’t know yet.” When the flight attendant came by, I said, “I will need help because I cannot understand the overhead announcements, and in the airport I’m going to need someone to tell me where to go.” She said, “No problem. We will do that.” They did not. It was the longest night of my life. Very, very difficult situation. Again, panic. I don’t know if I think I recognize that person. I have to chase them.

Chris: Then you fast forward to two months after I got a cochlear implant, a friend died. I decided to go to the funeral. My husband couldn’t go. I went by myself, got on a plane to Dallas airport, no problem. Everybody is sitting down. I happened to be in a row that for some reason had to empty seats because the plane was full. The flight attendant comes down the aisle and leans over and whispers, “Would you be willing to move to first class? I need three seats together for a family.” I said, “Yes.” Now, a year before, (1) I wouldn’t have been there by myself, but (2) I would have had to say, “What?” I don’t want to say out loud, “Do you want to move to first class?” They would’ve said, “Never mind.” They would’ve gone and found somebody else. I could hear the captain-

Richard: Let me ask you another question. Now, what is your greatest disappointment or regret? Do you have any since you got the cochlear implant?

Chris: No. Not one.

Richard: What’s your goal for the future now that you can hear again?

Chris: Well, to do a good job on my book promotion tour.

Richard: Talk about your book.

Chris: Well, before I got a cochlear implant, I got a hearing dog from Dogs for Better Lives. I learned a lot about traveling with a service dog and became friends with a deaf author named Henry Kaiser. He had a service dog. He wanted to go on a cruise. I said, “I can tell you all about it. It’s complicated, paperworks involved.” Together, we shared our information. Henry is a train buff and between the knowledge base we both had about traveling with these dogs, we realized there’s no resource. You just have to try and find people who can tell you what you’re supposed to do about it if you want to export your dog from the United States on a trip.

Chris: We agreed to write a book. We pitched it to the University of Illinois press and they accepted it and it’s coming out in September 2019.

Richard: The title is?

Chris: Traveling With Service Animals.

Richard: That’s very exciting.

Chris: It is. It helps greatly that I am able to hear because I could be interviewed. I could be on television if I need to. I can go talk to anyone on the telephone who has questions if they’re writing about the book. That’s my goal right now, to promote that.

Richard: Do you have any advice for others?

Chris: For people who have hearing loss?

Richard: Yeah.

Chris: I guess just do something about it. Don’t stay home and isolate yourself. It’s going to cut your life short. It could lead to Alzheimer’s disease. You got to stop that thinking, get the best hearing aid you can possibly afford. Then if that’s not doing the job, get evaluated for cochlear implant. Technology can be a miracle in your life. It was in mine.

Richard: Terrific.