Maria Anderson is a shining example of a cochlear implant recipient who has never let them slow her down for a moment.

A marathon runner, hiker and adventurer she recently completed a marathon in Greenland while wearing her Advanced Bionics processor clipped to her running shorts.  She has also hiked Kilimanjaro, and to the base camp of Mt. Everest as well as around Mount Blanc.

Maria’s hearing loss began in her mid-30s. She continued to compensate, determined not to wear a hearing aid so not to show her disability. She continued to struggle for 10 years before a total loss in her right ear forced her to reconsider.

She received an Advanced Bionics implant in 2007 and two years later went bilateral. Both operations were done by Dr. John Niparko at Johns Hopkins.

She discusses her fear of losing the 8% residual hearing in her left before going bilateral, her work environment, and the support from her family.

At first embarrassed by her deafness, she discovered the Sarasota chapter of the Hearing Loss Association of America where she learned how to advocate for herself and others  and her insights are invaluable and mentoring to help others has become a passion.

Transcript

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 it 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.

Voiceover: 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. 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: It’s not easy to catch Maria. A runner, a traveler, and an adventurer. It took three tries to get her to sit down and talk about her hearing journey. And her lifestyle choices that helped her select her Advanced Bionics cochlear implant and processors. Diagnosed with a hearing loss in her mid thirties, by her own admission she was too vain to wear hearing aids. And as her hearing declined, she was forced to reconsider. She talks of her embarrassment or being deaf, and her journey to become an advocate for herself and others, after joining the Sarasota Chapter of the Hearing Loss Association of America. I was grateful for the 25 minutes she would spare me before she was off and running again. And this is her story.

Maria: What happened was that in my mid thirties, I started to lose the ability to discriminate consonant. And what specifically happened is, I was sitting in a meeting, in a client meeting, and my colleague sitting next to me whispered a question to me. Richard, to this day, I have no idea what my colleague asked of me, because I just could not hear a darn thing. So I went to an ENT, and he had his audiologist test me. And they found that I needed to wear hearing aids in both ears. Well, here I am in my mid thirties, and there was just no way that I was going to wear hearing aids. I was just too vain.

Richard: Was it a vanity issue? Okay.

Maria: Exactly.

Richard: Fine, okay.

Maria: I admit it. No way was I going to. So I continued to compensate and my family, they were my accomplices and my compensation, as you know, until seven years later. No, about 10 years later, excuse me, I lost hearing completely in my right ear. Could not hear anything at all. Went back to the ENT, he thought that it had been a viral infection, never mentioned getting a cochlear implant, and basically just encouraged me to get a hearing aid in the other ear.

Richard: And this was how long ago?

Maria: Let me see. It would have been probably around the year, 2000.

Richard: So almost 20 years ago?

Maria: Right, exactly, that this happened. So I went ahead and I got a hearing aid in my left ear. And I worked, we socialize, life went on. Until the day I woke up, which was about seven years later, and I had 10% hearing left.

Richard: In one ear or both?

Maria: In the other ear.

Richard: Okay.

Maria: So at that point I was forced to get a CI. And I went ahead and got it on my right ear, which was the first ear that I lost hearing in. And that was in the year 2007.

Richard: Okay.

Maria: Two years later I became bilateral, and got my second CI.

Richard: I’d like to know why you decided to go bilateral, because that’s a point that many, many candidates are thinking about.

Maria: Well, at that point, my hearing was continuing to deteriorate. So it was really a question of time. I had already gone from the 10% that I had to 8% hearing. And the audiologist that I was seeing told me it’s only going to get worse, Maria. So one thing that he said to me that just sealed the deal for me was, he said, “Don’t think about what you’re going to lose. Think about what you’re going to gain.”

Richard: Were you afraid of losing the residual hearing?

Maria: Yes. I was so afraid of losing my residual hearing, I was so afraid of just being deaf.

Richard: If the residual hearing was only about 8% at that time, and you still had the fear?

Maria: Exactly. And I know today that does not sound logical, but it really was a major step for me to say, “Okay, I need to look at what I’m going to gain.” And it was amazing Richard, to see how much I had been missing, once I got that second CI. It was really eye-opening. And I realized again, how noisy the world can be.

Richard: I want to go back one second, because obviously you lost your hearing after college, after high school, way later.

Maria: Exactly.

Richard: What were you doing for work? What was your career?

Maria: I worked for a pharmacy benefit manager, and I was in customer service operations. I was the face of member services for one of our larger clients. So I had a lot of client meetings, lots of conference calls. I mean that’s what my day was about at work.

Richard: Did you leave that job or you stayed with it?

Maria: No, after I got my CIs, I was back at work, and I worked for five years until I retired. My hearing was never a performance issue.

Richard: That’s very interesting, because a lot of people, when they have problems in high school or college, so on and so forth, and I’ve interviewed many like that. I’ve interviewed one before, who had a very good job in public relations, and she was forced to leave the job because of the hearing. But you never left the job?

Maria: I left the job for a reason that had nothing to do with my hearing loss.

Richard: And your hearing loss came after ADA was passed. Did that have any effect on you at all?

Maria: You know what, shame on me, Richard, because I did not use ADA at work. And I really should have asked for accommodations, but I was still at that point where I was not advocating for myself. I was still very, I would almost say embarrassed by the fact that I had lost my hearing. I didn’t want to be singled out at work as being different. So you go with the flow. Were my days easy at work? No, not always, but I’ll tell you, I had colleagues that just embraced my situation, and helped me so much at work. Especially when I first came back after my first cochlear implant.

Richard: Did everybody expect her to hear right away when you got it?

Maria: Yes, of course they did. But I made it known that I couldn’t. I could attend small group meetings, but the conference calls, when you have 10 or 15 people on them with accents. And the speech, it’s very rapid and the questions and the answers are flowing very quickly. That is what proved to be the most trying. And again, I was very fortunate that my colleagues supported me to the point that they would lend me their notes, they would send me instant messages to make sure that I grasp a certain decision that they knew was key to me. Things like that. No, I was blessed.

Richard: You were absolutely blessed, because that’s very, very rare that that happens.

Maria: Exactly.

Richard: But you said something very interesting to me. I’d like to know, when did you start advocating for yourself?

Maria: After I retired and joined HLAA. I have to give the Sarasota/Manatee Chapter full credit for that. It was by attending their meetings Richard, that I’ve came to understand that I had to advocate for myself. Because if I don’t tell you that I have hearing loss, how can I expect anyone else to tell you that I have hearing loss. Or for you to be able to help me in a situation. So again, it’s getting over that, I don’t want to stand out. I don’t want to be different. But you know what? At one point, it just comes to the fact that we should not be embarrassed about our hearing loss.

Richard: What about your family, your family supported you fully, church?

Maria: Completely.

Richard: Everybody?

Maria: My husband Richard, from the day he heard that I needed hearing aids, to today has never blinked. He has stood by my side and supported me completely. My daughter knows when she comes to visit, she’s got to get my attention first. Otherwise Mom might miss what she’s trying to say. Even one of my sisters, when we go out, will advocate for me, and she’ll tell people, “You need to face her, because she has hearing loss.” And I think it’s wonderful. Now I’ll tell you that when my family gets together, we are Cuban, and when we get together for the holidays, for reunions, just like Italians and Greeks, the conversation starts flowing, 40 people talking at once. And yes, I do get lost in some of those conversations, but it’s funny because somebody will always say, “Hey, don’t forget, she’s not listening. She’s not cuing in. We’ve lost her, basically. We’ve lost Maria.”

Richard: You are blessed, no question. I’m going to ask you the other side of the coin. Who disappointed you when you lost your hearing?

Maria: I can only remember one situation that happened. I took my Volkswagen in to be serviced, and I could not understand the gentlemen, the service man that was going to take my car. And I told him that I had hearing loss, and he became very angry with me. And to this day I still don’t understand why, but it was very obvious in his tone of voice, the way he looked at me. All of a sudden his speech got very loud, and I said, “You don’t need to yell at me. Just look at me and please slow down.” He had a heavy accent, and I didn’t even bring that into the conversation. I just said, “Can you look at me when we’re speaking.” And I remember just being rattled.

Richard: Got flashbacks, you have [inaudible 00:12:28] flashbacks from that one? My gosh. Okay. Who advocated the most for you to get a cochlear implant, and how did you make your decision that day to do it?

Maria: Well, once again, when you have no hearing in one ear, and you wake up one morning and all you have is 10% in another, your options are very limited at that point. So it was a decision that my husband and I made, that if I was going to function in a hearing world, I needed to get a cochlear implant. And Richard, I wanted it. I wanted to be able to communicate with my family, to socialize, to travel, to go to work, to be able to live my life again. We almost have to stop seeing hearing loss, as this is the end of our world of our life. Rather it’s just a little step that maybe we need to take to the side, but then we get right back on course. And that’s what I wanted to do.

Richard: Did you have concerns about surgery?

Maria: I had my surgery done at Johns Hopkins. I went up there for a second opinion, because once again, when I lost my hearing completely, really we didn’t know anything about hearing loss. So I saw a specialist in Tampa, who said I needed a CI. But then my husband went ahead and emailed Johns Hopkins for a consultation, and we went up there and met with one of their audiologist. And since we had traveled from Tampa, they also introduced me to Dr. John Niparko, who was the head of the listening center, and who ended up being my surgeon. So in one visit I went ahead and got my answers about the CI, and also heard about the surgical procedure. So I decided to go ahead and have the surgery done up at Johns Hopkins.

Richard: It’s not uncommon that some of the candidates I’ve interviewed have traveled long distances for the second opinion. And you’re reinforcing that to people who are doing research, you don’t have to accept the first diagnosis. You can keep going and keep searching even if you have to go far afield.

Maria: Exactly, and for me it was well worth the trip. The surgery for the most part, I was comfortable going into it, again because I had Dr. John Niparko doing it. Like anyone going through CI surgery, I think our biggest question is, will it be successful? Will I be able to hear? So yes, I went into it with those fears. And on activation day, I was able to hear words.

Richard: Wow.

Maria: My daughter and my husband accompanied me. And it’s funny because my daughter’s tone of voice just fits beautifully in my sweet spot. So I was able to hear Christina better than I could, my husband. And even to this day. But I was able to hear some words when I was first activated. I returned to Johns Hopkins for the second CI as well. In fact, I used to travel to see my audiologist at Johns Hopkins.

Richard: Were you living in Florida at the time?

Maria: Yes sir. Yes. I would take a day off work, and I would fly up to Baltimore, meet with my audiologist, have the mapping done. And this went on for three years until Ryan left, and went to work for Cochlear in Australia.

Richard: Well that’s the next question. People want to know how to choose the brand. And if you know my website, it’s nonspecific. And I’d be curious about how you went about choosing what you’re wearing by the way, we haven’t discussed that.

Maria: Okay. I wear Advanced Bionics Naída, Q90. And we did a lot of research into the three brands. But the thing that I liked the most about AB, is the fact that they always seem to be a forerunner in technology. They’re always pushing the edge of the envelope as far as technology is concerned, with features and all of that. The second thing that attracted me to Advanced Bionics, is their customer service. I wanted to know that if I had an issue with any aspect of the processor, or any part, whatever, that they would be responsive. And to this day I can tell you that I have not had any issue in the last 12 years with customer service.

Richard: What aspect of the Advanced Bionics do you like the best? You said there were features you like. What do you like the best of it?

Maria: What I like right now about the Naída Q90 is that it has five programs. So I’m able to have one that’s DuPhone. I’m able to have one for telecoil. I also have one just for like regular conversations like you and I are having. I have a noise reducing program as well. So I have a variety of features available basically at my fingertips.

Richard: Do you have any regrets?

Maria: Not a single one. No, not at all Richard. Not a single regret that I chose Advanced Bionics. Not a single regret that I went bilateral. Not a single regret that I got my first implant. Like I said to you, what was most important to me is to continue to live my life, to be able to be as active as I always have been, and not to be a burden to anyone because of my hearing loss.

Richard: Your independence is the most important?

Maria: Yes, and that’s a very good way of putting it. Absolutely.

Richard: Do you have any hobbies or travel, things you like to do that are better because of your cochlear implant?

Maria: As a matter of fact, and I think you know that I’m very much into running. Two and a half weeks ago, I ran a marathon in Greenland.

Richard: My gosh.

Maria: I know.

Richard: Wearing your cochlear implant?

Maria: Absolutely. Yes.

Richard: You never take it off?

Maria: In fact, I have summited Mount Kilimanjaro. I have hiked to base camp at Mount Everest. I have hiked around Mont Blanc, and all of this is of course wearing my CI. I have a Neptune, which is Advanced Bionics’ version of a waterproof. That’s their waterproof-

Richard: How does that work for you? Describe that a bit.

Maria: The processor, what I do is that I wear a long cable from my headpiece, all the way down to my running shorts. And I put the processor behind me so that I can control the volume. And because of the heat and humidity primarily here in Florida, I wear the Neptune. But anytime that I am physically active, that is the processor that I wear. I don’t wear the behind the ear like the one that you and I are wearing right now.

Richard: Okay. And so that helps with running or swimming or-

Maria: Exactly. So that has allowed me to do one of my passions, which is running. Exactly.

Richard: What are you running away from?

Maria: No [inaudible 00:20:19] we’re running to.

Richard: Okay.

Maria: Look at it that way. And usually it’s a glass of wine at the end of the day.

Richard: All right now you have your hearing, I understand from you that you also mentor people who have Advanced Bionics. Can you talk a little bit about what you do when you mentor them?

Maria: Advanced Bionics has a meet-and-greet every month. And several of us that are mentors will come there, and we will then talk to folks that are considering getting a CI. Also those who have recently become implanted, that have questions about the journey. And the thing is, I think what we see is that there is a common thread, that all of us share the same questions, the same fears. And you want to hear from somebody that’s been through the process. And that especially has been successfully through the process, how it is, what it is that they did to help them get basically to the other side.

Richard: That’s a very, very important point, because I probably spend 30 to 40 hours a week on Facebook. And we know that Facebook has a lot of bashing the other brand kind of thing. My brand is better than your brand. So it’s important for people to understand that even though these interviews are long, they’re in depth. And that if you’re really doing serious research, you need more than a five second answer. Take your time to research and you’ll figure it out.

Maria: And also what’s good about these meet-and-greets is, there’s a couple of mentors there, so you learn different ways of handling the same situation. Also, if you have a question, you can then come back the following month if you want. We’re also available by email. I do a lot of email mentoring, where people are not ready to get on the phone or anything, and they prefer the written word. And that’s fine.

Richard: It’s the meet-and-greet, different from HLAA meetings like this?

Maria: Yes.

Richard: Can you describe some of the differences?

Maria: Well, the meet-and-greet is Advanced Bionics specific, and it is done at the Tampa Hearing and Balance Center, in one of their conference rooms. So basically what we talk about is the brand that we’re wearing, and what a cochlear implant is and basically answer the questions of the people that are gathered there. HLAA on the other hand, basically provides information and support to those of us who have hearing loss. It can be anyone who wears a hearing aid, or someone who wears a hearing aid and a CI, whatever. It’s I think probably a more of an umbrella type group, a very supportive group.

Richard: Let me ask you one last question. What would you like to tell people who are sitting on the fence?

Maria: Do it. You don’t realize what you’re missing until you go through it. Until you get your CI, and you see and you hear all those little sounds that you haven’t heard for years. It’s a hard thing not to be afraid, but sometimes you just have to take that step, and believe that you will come through it with flying colors. There is no reason why you won’t.

Richard: Well, I thank you very, very much for your time.

Maria: You’re welcome, Richard. I enjoyed it.

Richard: [inaudible 00:24:02] really, really nice. And I’m sure it will be a big influence for people who are sitting on the fence to keep researching, and find the right answer, because you can get your hearing back. I like to remind people, no surgeon will operate on you without a very high chance and confident of success. No matter what you choose, you’ll get your hearing back.

Maria: Exactly.

Richard: So thank you so much for your time.

Maria: You’re welcome.