Interview with Arlene Romoff Author and Cochlear Implant Recipient.
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AO/Beck: Hi Arlene. Thanks for your time today. I'd like to start by asking you a little about your hearing and your hearing loss. Did you have normal hearing as a child?
Romoff: Yes. I had normal hearing until my late teen years, and then it started to decline gradually. I got my first hearing aid at age 23 and over the next 20 or so years it gradually declined to the profound level.
AO/Beck: Were your physicians able to determine the cause of the hearing loss?
Romoff: No, they could never determine a particular cause. I suspect it's some sort of allergic situation, but it was nothing I could ever prove or control. So I watched my hearing continue to deteriorate and when my hearing got to the point where hearing aids could no longer function effectively for me, I became a heavy user of assistive listening devices - in particular an auxiliary microphone plugged directly into my hearing aid. After a while, even that no longer worked for me, and that's when I knew I needed a cochlear implant. I had been following the progress of research with cochlear implants so I had a pretty good idea of what was available and what to expect.
AO/Beck: What year did you get your cochlear implant?
Romoff: 1997. I just had my fifth anniversary - I can't believe it's been that long already. It's made such a difference in my life - the improvement in my communication ability has really been amazing.
AO/Beck: Yes. It really is. One thing I like to remind readers of is that this is a phone interview. I'm in Texas and you're in New Jersey and obviously you're understanding me quite well, even though I'm using a speaker phone!
Romoff: Right. I'm using the telephone just listening through the microphone of the implant.
AO/Beck: That's pretty amazing.
Romoff: It always amazes people when I use the phone - but it usually takes a little while before it dawns on them that they're speaking with a totally deaf person. It's kind of mind boggling. Nonetheless, I never take my hearing for granted - not one moment of the day do I take it for granted.
AO/Beck: What did you expect when you got your implant and what's been the most surprising thing about it?
Romoff: Well, as I wrote in my book, I just couldn't believe that there could really be a device that would actually allow me to hear again. I found the reality of that to be the most startling revelation of all. I had been going deaf for almost 30 years and with almost no hearing left, I simply couldn't imagine that I would ever be able to hear again. I was afraid that I wouldn't even remember how to hear again. It seemed like an impossible dream.
AO/Beck: You've taken a unique approach in writing your book. It's more like a day-by-day diary, isn't it?
Romoff: Yes, it's a chronicle of my first year with my cochlear implant - a day-by-day account of what it was like to return to a world of sound. It didn't start out being a book. As you can imagine in 1997, not that many people had cochlear implants. People may have heard about them, but they didn't really know how far the technology had come - and how well people could hear with them. I'm very active in advocacy for deaf and hard of hearing people and have been active since before the ADA. So I have many friends and colleagues, and many of them are either hearing impaired or are hearing professionals, and they were interested in following my progress with my cochlear implant.
The first day I was hooked up, I sent an email to about 75 people plus an Internet bulletin board, and just told them what it was like, and I got a few responses back encouraging me to tell them more. So I sent an email about my experiences on the second day, and even more people responded. They wanted to know more. On the fourth day, a deluge of emails came in. They were just pleading with me to keep writing - and since these included professionals, as well as people considering getting a cochlear implant themselves, I continued writing my daily reports. They found it fascinating. Actually, my advocacy efforts have always been geared to making something good come from my hearing loss, so being able to help people by reporting my experiences and insights fit me quite nicely. I got wonderful feedback from people who read my daily messages, and it became clear there was a great need for this. I kept writing for a year - and these emails became the basis of the book.
AO/Beck: So the whole thing wasn't actually planned, it just evolved?
Romoff: Yes. I sort of stepped into this gradually. After three months, people were encouraging me to have this material published, but I knew that one year would give a more accurate account of the cochlear implant experience.
AO/Beck: Let's talk a little bit about how people can get a copy of this book if they want to learn about your one-on-one personal experience with cochlear implants?
Romoff: The title is Hear Again with the subtitle of Back to Life with a Cochlear Implant. It was published initially by The League for the Hard of Hearing Publications, the publications division of the League. It has since been picked up by a mainstream publisher and distributor, Sterling Publishing Co., Inc., in New York. It's available in mainstream bookstores and online booksellers (like bn.com or amazon.com) just like any other book out there. You can ask for it and if it's not on the shelf, they can order it for you. It's also available from the League for the Hard of Hearing (www.lhh.org), as well as various publications catalogues.
AO/Beck: What has the response been to the book?
Romoff: The response has been far beyond my expectations! What I found was that even among people who themselves were cochlear implant candidates, they had no idea that the technology had reached the point where people could function so well with a cochlear implant. Some people tracked me down to tell me the impact the book has had on their lives. It's really been very rewarding. When somebody tells you you saved my life, you remember that. When somebody tells you your book is my Bible, or, I wouldn't have sought a cochlear implant if I hadn't read your book, it's a very humbling experience. Professionals have also found it useful, and have endorsed it and recommended it to their colleagues and patients. And parents have thanked me for writing it because it gives them a glimpse at what their children are experiencing.
AO/Beck: Yes. I'm sure that must be a very satisfying experience for you. What is your favorite part of the book, or - what's the one thing you hope everybody reads?
Romoff: That's a tough question because it's chock full of favorites! The book compares and contrasts what life was like before and after getting my cochlear implant - being able to hear versus not being able to hear. So the one episode that somehow encapsulates that best was the one in an elevator where somebody asked me a question. With my cochlear implant, I could chat casually with them - whereas before, I would have preferred to be invisible. The elevator incident cuts to the core of how hearing loss impacts the individual. It's about being so cut off from other people that you don't even want them to talk to you, and that event touches the very essence of the pain and the anguish of hearing loss that so few people realize - unless they've experienced it.
I've had a lot of feedback from people with hearing loss - they all seem to have their favorite episodes. And they've even told me they wished their hearing professionals would read it too. And professionals, even my own audiologist who fit me with hearing aids for many years, have said it opened their eyes too. But I have to tell you, when I wrote the book, I thought I was so unique. Over time, as I heard from more and more people who had read Hear Again, I discovered that I am not so unique after all! As a matter of fact, I would say the book is practically a case study about how hearing loss affects a human being. The details may change, but I know from the feedback that people really do identify with the situations and the descriptions.
AO/Beck: I think you hit the nail on the head and I think that's why the book is so valuable. When I read it I was really touched by it. I have normal hearing but I've been working with hearing impaired patients for 20 years and there was a commonality in the book that cuts across socioeconomic lines. I think of it as a typical story of how things go when you embark upon obtaining a cochlear implant. It's a nice day-by-day telling of the story and I think that many people can relate to it, and many more will.
Romoff: I never expected the book would have such an impact on people's lives, so I hope that more people will learn about it and read it themselves. I also hope that professionals will read it and recommend it to their patients. I know from experience that it answers many of the questions that people have about cochlear implants. It's also important to mention that I do point out in the book that how a person functions with a cochlear implant will depend on one's own unique hearing history. I'm thrilled with the way the cochlear implant has impacted my life, and it's my fondest wish to have others understand what cochlear implants can do as well.
AO/Beck: Lastly, I think it's important to mention that you actually have no financial stake in the book - is that right?
Romoff: Correct. I don't gain financially from this. This book was originally published by The League for the Hard of Hearing, and all proceeds have been donated to the League, a wonderful non-profit agency that has helped me and so many others cope with hearing loss.
AO/Beck: Thanks so much for your time. I really want to encourage people to read the book, and I thank you for writing it!
Romoff: Yes. I had normal hearing until my late teen years, and then it started to decline gradually. I got my first hearing aid at age 23 and over the next 20 or so years it gradually declined to the profound level.
AO/Beck: Were your physicians able to determine the cause of the hearing loss?
Romoff: No, they could never determine a particular cause. I suspect it's some sort of allergic situation, but it was nothing I could ever prove or control. So I watched my hearing continue to deteriorate and when my hearing got to the point where hearing aids could no longer function effectively for me, I became a heavy user of assistive listening devices - in particular an auxiliary microphone plugged directly into my hearing aid. After a while, even that no longer worked for me, and that's when I knew I needed a cochlear implant. I had been following the progress of research with cochlear implants so I had a pretty good idea of what was available and what to expect.
AO/Beck: What year did you get your cochlear implant?
Romoff: 1997. I just had my fifth anniversary - I can't believe it's been that long already. It's made such a difference in my life - the improvement in my communication ability has really been amazing.
AO/Beck: Yes. It really is. One thing I like to remind readers of is that this is a phone interview. I'm in Texas and you're in New Jersey and obviously you're understanding me quite well, even though I'm using a speaker phone!
Romoff: Right. I'm using the telephone just listening through the microphone of the implant.
AO/Beck: That's pretty amazing.
Romoff: It always amazes people when I use the phone - but it usually takes a little while before it dawns on them that they're speaking with a totally deaf person. It's kind of mind boggling. Nonetheless, I never take my hearing for granted - not one moment of the day do I take it for granted.
AO/Beck: What did you expect when you got your implant and what's been the most surprising thing about it?
Romoff: Well, as I wrote in my book, I just couldn't believe that there could really be a device that would actually allow me to hear again. I found the reality of that to be the most startling revelation of all. I had been going deaf for almost 30 years and with almost no hearing left, I simply couldn't imagine that I would ever be able to hear again. I was afraid that I wouldn't even remember how to hear again. It seemed like an impossible dream.
AO/Beck: You've taken a unique approach in writing your book. It's more like a day-by-day diary, isn't it?
Romoff: Yes, it's a chronicle of my first year with my cochlear implant - a day-by-day account of what it was like to return to a world of sound. It didn't start out being a book. As you can imagine in 1997, not that many people had cochlear implants. People may have heard about them, but they didn't really know how far the technology had come - and how well people could hear with them. I'm very active in advocacy for deaf and hard of hearing people and have been active since before the ADA. So I have many friends and colleagues, and many of them are either hearing impaired or are hearing professionals, and they were interested in following my progress with my cochlear implant.
The first day I was hooked up, I sent an email to about 75 people plus an Internet bulletin board, and just told them what it was like, and I got a few responses back encouraging me to tell them more. So I sent an email about my experiences on the second day, and even more people responded. They wanted to know more. On the fourth day, a deluge of emails came in. They were just pleading with me to keep writing - and since these included professionals, as well as people considering getting a cochlear implant themselves, I continued writing my daily reports. They found it fascinating. Actually, my advocacy efforts have always been geared to making something good come from my hearing loss, so being able to help people by reporting my experiences and insights fit me quite nicely. I got wonderful feedback from people who read my daily messages, and it became clear there was a great need for this. I kept writing for a year - and these emails became the basis of the book.
AO/Beck: So the whole thing wasn't actually planned, it just evolved?
Romoff: Yes. I sort of stepped into this gradually. After three months, people were encouraging me to have this material published, but I knew that one year would give a more accurate account of the cochlear implant experience.
AO/Beck: Let's talk a little bit about how people can get a copy of this book if they want to learn about your one-on-one personal experience with cochlear implants?
Romoff: The title is Hear Again with the subtitle of Back to Life with a Cochlear Implant. It was published initially by The League for the Hard of Hearing Publications, the publications division of the League. It has since been picked up by a mainstream publisher and distributor, Sterling Publishing Co., Inc., in New York. It's available in mainstream bookstores and online booksellers (like bn.com or amazon.com) just like any other book out there. You can ask for it and if it's not on the shelf, they can order it for you. It's also available from the League for the Hard of Hearing (www.lhh.org), as well as various publications catalogues.
AO/Beck: What has the response been to the book?
Romoff: The response has been far beyond my expectations! What I found was that even among people who themselves were cochlear implant candidates, they had no idea that the technology had reached the point where people could function so well with a cochlear implant. Some people tracked me down to tell me the impact the book has had on their lives. It's really been very rewarding. When somebody tells you you saved my life, you remember that. When somebody tells you your book is my Bible, or, I wouldn't have sought a cochlear implant if I hadn't read your book, it's a very humbling experience. Professionals have also found it useful, and have endorsed it and recommended it to their colleagues and patients. And parents have thanked me for writing it because it gives them a glimpse at what their children are experiencing.
AO/Beck: Yes. I'm sure that must be a very satisfying experience for you. What is your favorite part of the book, or - what's the one thing you hope everybody reads?
Romoff: That's a tough question because it's chock full of favorites! The book compares and contrasts what life was like before and after getting my cochlear implant - being able to hear versus not being able to hear. So the one episode that somehow encapsulates that best was the one in an elevator where somebody asked me a question. With my cochlear implant, I could chat casually with them - whereas before, I would have preferred to be invisible. The elevator incident cuts to the core of how hearing loss impacts the individual. It's about being so cut off from other people that you don't even want them to talk to you, and that event touches the very essence of the pain and the anguish of hearing loss that so few people realize - unless they've experienced it.
I've had a lot of feedback from people with hearing loss - they all seem to have their favorite episodes. And they've even told me they wished their hearing professionals would read it too. And professionals, even my own audiologist who fit me with hearing aids for many years, have said it opened their eyes too. But I have to tell you, when I wrote the book, I thought I was so unique. Over time, as I heard from more and more people who had read Hear Again, I discovered that I am not so unique after all! As a matter of fact, I would say the book is practically a case study about how hearing loss affects a human being. The details may change, but I know from the feedback that people really do identify with the situations and the descriptions.
AO/Beck: I think you hit the nail on the head and I think that's why the book is so valuable. When I read it I was really touched by it. I have normal hearing but I've been working with hearing impaired patients for 20 years and there was a commonality in the book that cuts across socioeconomic lines. I think of it as a typical story of how things go when you embark upon obtaining a cochlear implant. It's a nice day-by-day telling of the story and I think that many people can relate to it, and many more will.
Romoff: I never expected the book would have such an impact on people's lives, so I hope that more people will learn about it and read it themselves. I also hope that professionals will read it and recommend it to their patients. I know from experience that it answers many of the questions that people have about cochlear implants. It's also important to mention that I do point out in the book that how a person functions with a cochlear implant will depend on one's own unique hearing history. I'm thrilled with the way the cochlear implant has impacted my life, and it's my fondest wish to have others understand what cochlear implants can do as well.
AO/Beck: Lastly, I think it's important to mention that you actually have no financial stake in the book - is that right?
Romoff: Correct. I don't gain financially from this. This book was originally published by The League for the Hard of Hearing, and all proceeds have been donated to the League, a wonderful non-profit agency that has helped me and so many others cope with hearing loss.
AO/Beck: Thanks so much for your time. I really want to encourage people to read the book, and I thank you for writing it!
