Hearing Loss as an Influencing Factor in Instrument Selection with Dr. Deborah McCaw as Facilitator

This is the transcript of the focus group discussion we had during our 2015 conference about how the age of onset of hearing loss impacts the selection of musical instruments.

WENDY CHENG: First of all, let me introduce Deb to you all. She lives very close to me. And about two years ago she was looking for a violin teacher and she managed to Google my name somehow. I mean she Googled my teacher’s name and when I moved from one teacher to another, she moved with me. So I’ve known Deb for quite a while and she’s a professor of psychology at Gallaudet University. And we’re very glad to have her. I should back up a bit. In our Association, we have people who lost their hearing after a lifetime of playing music. Then we have also have people who have had hearing loss all their lives and they took up music later. So we try to support the needs of both groups, although sometimes it’s a challenge. Anyway, I have been very curious about the question, “Does hearing loss affect instrument selection?” And I thought, well why don’t we form a focus group and maybe we could do a nice, very scholarly research study of this very interesting question and see what happens. So I’m very lucky to have Deb here because I know next to nothing about running a focus group. Please welcome Deb.

[Applause]

DEB MCCAW: OK. First of all I’m thrilled to be here and before we start I just want to make sure that communication is clear for everybody. The captions are clear. And I thank everybody for moving into a semi‑circle. Part of the whole point of today is for us to share with each other. OK. Thank you, everyone. Part of the point today, we’re going to kind of back a little bit. Jennifer just talked about what to do if you’re a person with a vision or hearing loss and you want to get a music degree. I’m going back to more like the beginning of when you first start music and how hearing loss might have an impact on instrument selection. In particular, I became very interested in this topic because I am a person with a hearing loss. I have a genetic form of hearing loss that’s progressive. So I started as early as 3, maybe earlier than that, but didn’t have hearing aids until I started school. Because like Jennifer said, back then most people weren’t diagnosed with hearing loss until they had language or started school and failed the hearing test. My progressive hearing loss progressed even early childhood through elementary and through high school. And I became profoundly deaf, probably in the later part of high school. And then I would say even as I was finishing college, I reached a point where I was not able to find good hearing aids. So I listened to music all together for about 20 years until probably about ten years ago I got my first cochlear implant. And that really opened up the music world again for me. Needless to say, I was thrilled. Growing up I always loved music. I studied primarily the trumpet and a little bit of guitar. Trumpet, obviously, we’ll talk about it a little later, that is one of those instruments “not recommended” for people with hearing loss. So it’s very interesting. That said, when I first started, I went through that whole process of instrument selection in 4^th grade and I was ready to start band and orchestra. I initially wanted to start with the violin, but my mother was told, no, I couldn’t play the violin because of my hearing loss. So I was devastated, but I moved on and at that time they recommended the saxophone. Now the saxophone wouldn’t have been an instrument I would have selected, but I was just happy to play something. So I started with the saxophone and later switched over to trumpet by choice. I’m trying to think ‑‑ middle school age I started the trumpet. I was much happier with the trumpet. So that’s a little bit about me. I want to kind of move on here. Do we have a clicker?

So the interesting thing is when Wendy and I first started about doing a study related to instrument selection I decided to do a quick lit review to think about what to develop there. One thing I noticed was most of the work was writerren by music educators and things they cooked up about what makes the most sense about what we know about music and hearing loss. What’s very interesting is there’s very little from deaf and hard of hearing musicians themselves. So this is where we’re going with this study that Wendy and I are going to do. Possibly John would like to be involved too. We would like to develop a study to first understand what actually goes on, what kinds of experiences deaf and hard of hearing musicians themselves have been through, and use that information to better inform the selection process for music educators in the future.

So this is a very preliminary thing. I did a lit review in January and for some reason I couldn’t find my stack of articles that I found, so I tried to find some new ones last night. What I did find was interestingly, most of the research about instrument selection focuses on gender. Gender stereotypes and how that informs what types of instruments people pick. There’s tons and tons and tons of stuff about that. There were a few others that talked about, like sound quality and how that would impact on selection. And also obviously the influences of the people around the children. The peer, the teacher, the family. How that would influence selection. There were a few studies done that were interesting about ethnicity and disability and how that impacted. There wasn’t a lot about hearing loss. That was more difficult to find. There was more stuff about, like more global, doing music with children who are hearing impaired in regular classroom‑type music, but not instrument studies.

QUESTION FROM THE AUDIENCE: Was economics a factor that was also taken into consideration?

DEB MCCAW: Not in the studies there, but that’s an interesting question.

I don’t know how much background any of you have with just how the audiogram doesn’t always tell the whole story when they talk about hearing loss, that there are, when you look at general Deaf community, you could have people who are audiologically hard of hearing but they function more like they’re part of the deaf ‑‑ you have ‑‑ I think that’s a very important thing to keep in mind, even with music too. Because everyone’s hearing loss is very individual, and so that would really influence the kinds of thing they can or can’t hear. And the things which would sound pleasing to them.
One interesting thing, I did find one kind of article. I don’t know, maybe some of you have seen is this. I Googled and found it, one deaf musician himself who made comments about how you might influence the selection of instruments for children who have hearing loss. And he was basically using a line ‑‑ actually many music instructors do kind of go on that line of thinking, which is basically thinking about which instruments require more pitch perception than others. So there’s a saying that instruments that aren’t as ‑‑ you know, mobility ‑‑ to being able to perform on it, would be more recommended than most who are really behind ‑‑

>> Maybe I’ll start chewing on it.

>> The mic needs to follow your mouth like this.

>> I’m very inexperienced with using microphones. I’m mostly used to teaching music sign language, and this is kind of a new experience for me. So on this recommended list that this gentleman had, he indicated things like piano, guitar, because it’s a fretted instrument. Digital drums. Flute. Like wooden instruments that had keys that were set, so it would be more difficult to mess up pitch. So he recommended those kinds of instruments and he said that the not recommended list would be the bowed stringed instruments like violin, viola, cello, upright bases because all of them would require pitch to play them accurately.

Acoustic drums, trombone. Because obviously you need to be able to hear pitch to be able to know where to put the slide. Trumpet. I think in theory that’s what surprised me, because for me, I had a very significant hearing loss when I played trumpet, but I found the notes are very clear to me. The brass sounds were very easy for me to hear. But technically, think about the trumpet’s three keys. So you have to be able to create the range of vocals with your lips so it does obviously require some pitch. And then the French horn which is more complicated than the trumpet. So I wanted to check in with you if you have any thoughts about this list. Does it surprise you? Is it what you would expect?

STEVE SHEY: To me, violin, viola, cello, and the upright bass are actually similar to the classic acoustical guitar in that the left‑hand action is very similar. One down here, versus up here, or up here. As far as pitch, yes there’s frets on the guitar, but you still have to be able to hear what you’re plucking or the person’s playing. I play the violin, so I don’t agree with that.

[Laughter]

DEB MCCAW: Interesting that you say that. I actually play both guitar and the violin now. I can understand now why my teachers were the way they were because I find with violin, because it’s not fretted. It’s actually interesting that I keep tapes on the keyboard so I stay in pitch. I don’t want to be out of pitch, just stay with the tradition of that you learned to play that way. But you can move your finger 1/10 of an inch and you’re out of pitch with violin, whereas guitar is much more forgiving. That’s been my experience.

>> I would like to ask you if you could hear when you first started to play.

>> Yes.

>> That’s a big difference.

>> So maybe that’s what it is.

>> Pitch memory.

>> Degree of hearing loss.

>> I can’t imagine how you could play violin if you can’t hear at all. What tells you where to put your fingers.

>> At that point it’s physical memory.

>> Exactly.

>> Once you get it, it’s all about motor memory. But before you get it, before it’s hammered in, if you’re not hearing pitch, you could get wrong memory, and then you’re playing out of pitch constantly. I think it’s a big challenge. Guitar, I never experienced that. I think the frets gave me the visual guideline I needed to do it. Even within a fret, the pitch doesn’t change all that much within a fret. There are minor things. Charles maybe you can comment more on that because you’re a guitarist.

 

NANETTE FLORIAN: I’m finding ‑‑ I’m a pop musician and I’m working in recording studio now, and I’m trying to produce music for us hearing impaired people. And I’m trying to find the right instruments that we ‑‑ of course we’re talking about performing and playing instruments, but what I’m trying to do right now is find the instruments that we hear the best with our processors and our hearing aids. And the list is really topsy turvy. To me a cello comes through really clearly. It’s just interesting to me that it’s the opposite. Or a trombone or a trumpet. Did anybody ever see the Charles Limb video? He was doing a session about ‑‑ he’s a cochlear implant surgeon and also a musician. And they put a cochlear processor on a cat. And the cat was taking a nap. Did anybody see this? Charles Limb? It’s very interesting. So the cat’s sleeping and these people are trying to figure out, what instrument, what music is going to wake the cat up. And they played some symphonic music, and saying this is really interesting. And with a processor, I’m going I can’t hear that either. But as soon as the trumpet played, whoa! The cat woke up. The trumpet’s are really good. I don’t know if I hear it in good pitch.

>> You’re talking about intensity, capacity to hear. This is more for tuning, the pitch.

>> I understand that, but for hearing also, as a musician also, you have to hear what you’re doing. The list is opposite.

DEB MCCAW: That’s very interesting because being a perceiver, receiving this as opposed to producing it. Right. But I think for me, I know as a person with a hearing loss, any visual clues I could use always helped me with being where I needed to be. And for example, the viola, the violin, all those don’t have those visual cues on them. But trumpet, it’s interesting, it’s so clear I was able to still distinguish it. Go ahead.

ROCHELLE DRUCKER: I recently started taking violin. I have a cochlear implant. And my teacher gave me one of those tuners that you put on the end of the violin. So I’m training my brain to recognize the D as a D, a G is a G. And like he said, it’s muscle memory. My teacher has to put stickers, stickers on the violin. So I’m slowly beginning to recognize it, and when I play something that I already know, I know I’m playing in tune just by listening. I think it’s good auditory training for me.

DEB MCCAW: Exactly. It’s wonderful auditory training. That’s a big part of why I started the violin. Go ahead.

LUANA SWISS: I think this also depends on our level of loss. Which [frequency] bands we’ve lost. I know there’s some up there that I can hear better than others. When I hear them in a group, I can’t discern them at all. But I still teach privately. I still teach piano and I can hear that just fine.

DAWN MOLLENKOPF: I was just going to comment back on the violin, since ‑‑ I picked up violin about 8^th grade, and I was born with a hearing loss. At the time, my loss was moderately, severe to moderate. So it was reverse flow. And I actually did see a diagram of the hearing range of the violin to my hearing loss, it was fairly compatible. I know I got stickers for a few weeks, and once I had the position memorized ‑‑ there may be some other things my teacher had in mind for me to correct ‑‑ but pitch wasn’t one of them. So the motor memory was fine to do that with.

DEB MCCAW: It is very interesting to me too. I’m trying to get my head around the concept of a person who could be with severe hearing loss and still have perfect pitch. Like scientifically and ideologically, what’s going on. The interesting thing, one reference I found, Robbins and Robbins from the ’80s who did a lot of work with children who had hearing loss and teaching music. One of the final comments he made is the most important thing to consider is what instrument does the student themselves want to learn? Because really, motivation is a really important factor. Something that they truly love, and are motivated to work at it. I think that’s another important thing to keep in mind here. Now that’s just a little bit of background to where we’re kind of going. The purpose of today was to kind of hear from you about your experiences and things. And by hearing from you, that would help us kind of develop a survey that we would put out later to other musicians to get more statistical code analysis of the relationship between instrument selection and hearing loss and whether it’s related or not. One of the things I thought would be helpful is before we start the process if we could go around the room and everybody could introduce themselves, explain where you’re from, and what kind of hearing loss you have. The degree of hearing loss. The type, and when was it first diagnosed. And whether it’s stable or changed over time. We’re also curious to know what instruments you play and when you learned. OK? Would it be helpful if we pass the microphone around when we do this? Does anyone want to start?

CAROL MARTON: Hi, my name is Carol and I’m from Boston. Originally New York, but lived in Boston many years. I have a progressive hearing loss that I discovered literally upon going for a graduate degree in music in choral directing. I’m a choral director and a singer. And I’ve been a musician since I was very young. And I play piano, slowly, also. At this point I’m losing the high notes of the piano, not the highest ones, but from the high C to high G perhaps. And I would say the most interesting thing that I could contribute to this particular discussion is not so much about instrument choice, but that at the moment that I began, it was literally upon arriving at music school. Literally at the end of the night putting my head down and hearing the cricket noises go away. That was about 20 years ago and it’s progressive to the point where PSAPs [Personal Sound Amplifiers] ‑‑ they’re not official hearing aids. I find them much better for music than the very expensive hearing aids that I was sold some years ago. Happy to talk about that at another moment. The point I would just say for today is that in my program for studying conducting, a lot of focus was put on work with the inner ear. So that we were given a score and told for instance, OK, so don’t make a sound, don’t even move, but see how far your imagination can ‑‑ reading the score, hear the viola part. How far can you go and keep hearing it and then check ‑‑ what’s interesting to me to discover in the first place is that inside my head, I would go flat. Which I always thought was a physical thing because I’ve been a singer for all those years. Anyway, I learned over those couple of years to not go flat. So my inner ear has improved. As my hearing loss has gone this way, my inner ear has gone this way. So I think it’s contributed very much to my ability to continue to do music thus far. And I will just add to the discussion also that it does seem so individual about instrument choice and that a child with hearing impairment should be exposed so that perhaps if they’re drawn to one instrument and they realize, oh I can hear so many more notes if I do this instrument. But it just seems so individual. Sorry. Long story.

DAWN MOLLENKOPF: My name is Dawn, I grew up in Oregon, I live in Nebraska, and that’s where I’ve been for the last 12 years. I have brachio-retial syndrome and so do three others in my family. My loss was initially stable. It was a reverse loss because it was predominantly conductive and when I hit 30 it went my reverse loss reversed. So now I have severe and profound loss, and I can’t tell you whether it’s still progressive, but this moment it’s currently stable, which is you know, is all we got. I was basically exposed to very little in instruments as a kid. My mom had this player piano type thing organ, and I was short. Still very short.

[Laughter]

I could stand up to the keyboard and turn on to the volume and when I put my left ear, I could hear it and see the letters underneath and that’s how I learned to play Mary had a little lamb and some stuff when I was 4. My mom said if you want to play an instrument you have to do piano first. It’s the basis for everything. So somebody donated a piano in 3^rd grade and that was the first instrument I played. When I hit 8^th grade, I saw an orchestra for the first time. So as far as I was concerned it was also the first time I had heard one. So they had this is big violins, little violins and in between violins.

[Laughter]

That’s how much I knew. I walked in there and said I’m playing the little one. I want the violin. And my mom says, oh, don’t you love the flute? Nope, you made a promise. I’m going violin. So that’s what I did. Voice is entirely accidentally. I don’t think anybody thought I did fairly well because I was always singing in a group. One day I went to the synagogue and they didn’t have anyone, and they asked me to sing the candle blessing. I thought, well, I can wing that. I got up and sang the candle blessing and someone called afterwards and said we want to talk to you. I thought I must have messed up. It’s actually because our soloist musician canceled for the high holidays, can you sing. I said do you have music? Because I can read music. They said yes. So in six weeks I memorized it and that’s how I got into voice. So that’s probably one thing that I know, but here we go.

CHERISSE MILLER: I am Cherisse Miller from South Carolina. I have a progressive hearing loss, it is pretty much severe to profound. I was born with normal hearing and my hearing loss came from drugs taken for pneumonia when I was in the 3^rd grade, which was in the early ’60s. And I went all the way through school without wearing any kind of hearing aid, sitting in the front of the room and so forth. It wasn’t until I was in my 30s that I actually found out that I had lost my hearing from drugs when I went into the ENT’s office. And I won’t tell you all about that. But I grew up in a very musical family. My mother was a pianist, my father was a choir conductor and vocalist. So we always had music in the home. And it was never said that well I couldn’t do this because I couldn’t hear. In high school I remember not being able to hear some of the high‑lows and thinking why do they have all these high notes on the piano when you can’t hear them. And I didn’t realize other people could. And I already had a bachelor’s degree in applied piano and I remember my students could hear these pitches and I go, really! I always assumed that nobody could. I’ve been a piano teacher for about 40 years. Oh, I also played the oboe back in junior high and high school and I loved it. But piano and organ or basically my instrument. I just retired from church music playing the organ. I did have problems with some of the sounds, and I’m sure I didn’t hear everything. But I just knew what I could play and what sounded good to me and I just depended on feedback, you know, if I got too loud. I just learned that well, this is how far I can go. And we just had a really good amplification system, so I was pretty good at that. Back in 2002 I decided that I wanted to go back to school after my children grew up. So for the last decade I pursued a master’s degree in piano performance. And it was then that I started wearing the digital hearing aid so I could hear. And then I got those turned on and I loved being back in school and I got my doctorate in musical art in piano pedagogy. So anyway, I’m kind of going around doing all kinds of workshops teaching children with hearing loss, based on my experience as a musician with hearing loss. Even though I haven’t had much experience teaching students with hearing loss. But I find that in playing the piano and in learning all those big pieces, when I went back to school, my teacher was very interested in teaching students with disabilities. I mean, I did the same type of repertoire as anybody else doing a performance degree. Played Liszt and Chopin and all these big pieces that used the whole range of the piano. So I had to figure out how to practice these with the low notes, very thick textures were very sometimes hard to discriminate. So I had to just get used to it and the muscle memory and so forth. Then of course on the high pitches, I would just learn how to practice it lower, an octave lower or whatever I needed to do to learn it. And remember how it felt. Of course, I could audiate how it sounded. A lot of times it’s through octaves and so forth in chord, so I was able to audiate it. The most problems I have with teaching to children is just communicating what I am hearing what they play. So anyways.

 

JANICE ROSEN: I’m from Washington, D.C., and I was born with normal hearing but because of birth defects, I started losing hearing in the middle ear. And I had surgery when I was in high school. But unfortunately something went wrong and I lost hearing in both ears. I’m profoundly deaf now. I also have something called congenital ‑‑ affecting my ability to play the piano. I always had music in the house. We’ve always been interested in music. I grew up listening to lots of classical music, the Metropolitan Opera. I learned to play the clarinet because ‑‑ I learned percussion but I didn’t like it, because when I was in the high school band all the boys were playing drums and I was a girl. I play the clarinet and I did really well. The band director gave me the ‑‑ I did very well but ‑‑ college, a career, I put my music interest on hold and went to school. I got a degree. Even though I took the vocational interest test, he said I should study for a degree in voice. But life happened. Anyway now, I am taking music lessons at the International School of Music in Bethesda. I feel like I’ve gotten back into what I love doing. I love taking piano lessons, voice lessons. I played in the synagogue when I was child and I do community choir now as an adult. I play the clarinet. I love playing the clarinet. And right now I’m looking for a music school/college that would accept me. I’m interested. I know I would never pass the performance requirement. I don’t know about the other requirements. All those things ‑‑ I don’t want to go through all the other stuff you have to do to get a master’s or a doctorate. I have three master’s degrees. I’m hoping that maybe I can do something at Catholic University where I completed my library degree, because they have a very good music program. So I feel I’m kind of limited. But I’m really interested in now I know what kind of instruments I can use when I’m interested in. I’m interested in pursuing something but I’m looking for maybe doing something that I can base my past degrees on and move forward with that. But I’m really grateful to this organization for providing me with those tools and the encouragement.

JUSTIN SWAIN: I am Justin Swain and I’m from the greater metropolitan Washington area which includes anywhere between Rockville to Frederick, Maryland. Type of hearing loss, congenital defect with the bone structure of the inner ear. The early diagnosis was made by Montgomery County health department when I was in the 3^rd grade. I should tell you the hearing test was conducted next to a live basketball game. Bounce, bounce, bounce! Yay! I questioned the value of the test.

[Laughter]

The next one wasn’t much better. A couple years later it was in Rockville, the “health center.” The pneumatic girls hammers didn’t help any more than the basketball game. Anyway, it’s a stable hearing loss. I’m deaf to high frequencies. And when I have appropriate amplification I can function rather well. Otherwise to walk up and try to be a part of a conversation, I get really strange looks because I didn’t hear what the topic was directly. ‑‑ where the topic was directed. What instruments do I play? I started out with piano. My mom liked piano and said there was a piano in the house. My next door neighbor, her father was the founder of the Laurel flute company. So my next instrument was a flute with sort of a whistle mouthpiece and I graduated to the professional mouthpiece. A lot of tears and trying before I finally got to blow that one.

[Laughter]

And today I enjoy playing the piano and clarinet. Particularly the clarinet and vocal music. I’ve always enjoyed the vocal music and have been good at it.

VICTOR ROTBERG: My name is Victor. I live in Ann Arbor, Michigan, where there’s so many opportunities to play in groups and in bands and orchestra in the church. And my hearing loss is called otosclerosis. It’s genetic. It runs in families and my dad passed it to me. I hope I didn’t pass it to my grandchildren. My children don’t have it. You never know who will pop up and have it. It’s about a 50% chance [between generations]. Anyway, my loss started when I was 20. I worked in universities for 35 years. But I chose my instrument when I was in my early teens, when I did not have hearing loss. And I fell in love with all the wind instruments, especially the clarinet, which is my main instrument. After I retired after 35 years at university, I started doing music, which is my only thing now. It’s very important to me. And I got in trouble with a lot of conductors from orchestras because of my pitch problem, which I improved by having a tuner always in front of me. And when I had the long notes, that’s the most critical part of pitch. But it’s difficult to be in tune with some player which is 30 feet away playing the trombone, and I have to be in tune. And that’s lost. So I cannot do that. And the other thing is also knowing where you are. Sometimes a script would be here or there, so one of the things I’m learning now is to do what they call “do no harm.” Do no harm to the performance. If I think I’m not doing it correctly, stop playing it immediately before you mess up the whole thing. I was happy to hear when Jennifer when she was talking about the importance of singing —how it can improve your music on the standing performance. I don’t like singing. My voice, hurts. I have to work on that because I believe that will improve my sense of tuning.

STEPHEN SHEY: Hi, my name is Steven Shey. I am from Boston, Massachusetts. I have bilateral hearing loss. I was first diagnosed when I was about 5 years old in elementary school. But at that point, my parents thought I was just ‑‑ I didn’t wear my hearing aid because of self‑esteem. Not just being made fun of because I was the Asian kid, but I was also the “deaf kid.” So I didn’t actually wear hearing aids until I got to my mid‑20s. I play the violin. I dabble on the piano. I do teach both, and I started violin when I was 3. My mom got me started on that because it was right underneath the ear, so she thought it could make up for the lack of hearing. I am probably though convinced that it probably made some of the hearing worse in the early years just because I had no perception of, oh, the more weight you put on the bow, the more sound you’re going to pull out. So yeah. That’s my story.

WENDY CHENG: OK. Before I tell more about myself, I want you all to look at the schedule. I’m a little concerned that I’m overly ambitious, and this focus group is probably going to run two hours instead of 45 minutes. So if I have to do something with the afternoon ‑‑ but you know, we can talk about it during lunch if you want to. But I keep trying to not get too nervous about running behind schedule.

Anyway, I lost my hearing when I was 9. To be precise, it was not diagnosed until a school screening in the 3^rd grade. I’m originally from Taiwan. I came here when I was 7 years old. Two years after arriving to America, they did realize I have a hearing loss. My hearing loss, I have sensorineural hearing loss. We think I lost my hearing because of the otoxic medication given to me when I was 3 years old. My mom insisted all her girls learn piano whether we like it or not. And when I was in high school, I did really well in ‑‑ I passed a musical aptitude test for band. I was too nervous to think about playing in band because I knew the teacher was going to walk around. I didn’t know what an FM system was at that time, and I was afraid of failure. But when I got to the age of 16, I wanted to learn the violin. Everybody said, “you do not have this pitch perception, you cannot play violin”. To make a long story short, I started violin lessons in the spring of 1984 when I was a college sophomore. I started violin lessons and sign language lessons at the same time. It was just eye opening. Since then, I have moved from violin to viola because the sound quality is better. So that’s it.

JAY ALAN ZIMMERMAN: Hi, there, I’m from New York City. I’m a composer and musician. I’m original from Iowa, so I pick up the piano from my mother who was a piano teacher and the piano was directly under my bed, so there was no escaping that downstairs. So I’m profoundly deaf now, which my hearing loss first appeared in my 20s. I have the type of hearing loss which is called “what the fuck.” We have no clue what it was. It could be genetic. So I became profoundly deaf after September 11, and scientifically they’re trying to figure that out if that’s part of the reason I became deaf. We’ll find out them. What else? Is that it? So I play piano. I used to play saxophone, oboe, briefly the tuba, but that was not pretty.

[Laughter]

PAT DOBBS: My name is Pat Dobbs. I’m from New Jersey. I’m going to tell you something you probably won’t believe. My instrument is the piano. I never learned how to play it. I was born playing the piano. I totally believe that. I do not remember learning. My father is from Vienna. We all play the piano. My grandmother, father, sister. We play duets. We shared. Piano was just part of our life. I started to lose my hearing when I was 20, but it was gradual. But maybe 15 years ago, piano sounded so awful that I just stopped playing. Today, I have two cochlear implants. I just got my second one a few months ago and because I met Wendy, and she encouraged me to play. And then she said, do you want to play the open mic is the first time I have been playing the piano in I would say 15 years. So I would like to thank Wendy for asking me to play during the open mic. And it’s the first time I’ve been playing in 15 years.

LUANA SWISS: My name is Leona Swiss, I’m the oldest person here, I think. I’m from Middleton, Delaware, originally from New Jersey. I have autoimmune inner ear disease, which I have never heard of until I started to lose my hearing. Does anybody else have that? I have not heard one person. Wow. I am really weird.

[Laughter]
I have played piano since I was 5, and I was 5 a long time ago. So I’ve been playing forever. I taught elementary school music for 34 years. I was the band director and a choral director. And because of playing the piano, I always protected my hands. I protected my arms. I wouldn’t go skiing when the other teachers went skiing because I didn’t want to break these. And lo and behold, about five or six years ago, I realized, leave it there. It doesn’t want to be with me.

[Laughter]
I realized though, I was losing my ‑‑ I wasn’t hearing well. I went to the audiologist from HD double hockey sticks. HDLL, the audiologist from hell. She did not have the most wonderful bed side manner. I thought I was going to get the wax cleaned out of my ears. And after the examination, she came out and she said, guess what? And I said what? She said you’re getting hearing aids. Well, I thought I was going to die. I had no clue. So I’ve been wearing these hearing aids for about five years. I have a profound loss. I’m not profoundly deaf; I have a profound loss. My husband Dave is with me today. In case you’re wondering about that cute little guy back there. He’s mine.

[Laughter]
And I still teach privately, one‑on‑one. I can’t hear large groups of musicians anymore, which I really miss. My husband went out and bought this incredible Bose system for the house so that I could listen. And it comes at me as total noise. I cannot listen to. I’m sure a lot of you can relate to that too. What else? What do I play? I play the piano. That’s my main instrument. I have perfect pitch. That’s not something ‑‑ when you tell people that ‑‑ they’re like, well, oh, she’s perfect. That’s not it. Those of you who have it, know you’re born with it and Jennifer knows that. I obviously had it when I was very little. I used to play the piano in the living room and the kids used to sit on the glider on the porch and whine that I want you to play this and play that. But I can no longer hear them. So I’m out of touch with the music of today. But I still love to play and I’m looking forward to playing for Jennifer. It should be really interesting because she doesn’t hear and I don’t hear either.
But we’re going to be just fine. And I’m really excited to be here. I didn’t know there were people that went through the same thing. I’m the only person that I know in my area who goes through this. And when I tell people, the first thing they say, and I’ve said this to some of you, when I tell people I have a hearing problem, they say have you tried a hearing aid? One. And this audiologist from hell said to me you’re getting hearing aids and I said how many am I getting? Because I think most people think you wear one. And she said to me, how many ears do you want to hear out of? And I said to her, how many ears do you want to hear out of. And she said both. And I said well guess what? So do I. So I got that from a lot of people. You know, have you tried a hearing aid and I’ve gotten to the point where sometimes I say, hello? Yeah, two of them. And I’m sure the other things you people have heard is when I say to somebody I don’t hear well, they say, well, I can scream! And that’s an insult. But it’s just that people don’t know. And the other thing is when I’m in a store like Walmart or something, I say to the clerk, I’m sorry, I don’t hear. And they say, oh, that’s OK. And I want to say to them, no it’s not OK. It’s not fun at all. So anyway, I’m really glad to be here I’m really looking forward to working with Dawn and hopefully hearing some of you. I went downstairs yesterday and played the piano, and it was just awesome. So those of you who like piano. You’re going to have a great instrument.

Thank you for the opportunity, my microphone is shaking. I don’t usually get nervous, but I did today.

ANGELA PURKETT-HILL: My name is Angela. I have one of those hyphenated names. I’ve had a hearing loss all my life. Started out as a mild loss, and as time goes on I’m telling my age, this year I’ll be 50 years old. So it’s just only been recently that I’m learning that my hearing loss is probably a condition, part of a syndrome. There’s a saying that if it acts like a duck, quacks like a duck, it’s a duck.

[Laughter]

So I have hearing loss and I also have retinitis pigmentosa (RFP), so that could well be part of a syndrome called Usher Syndrome. So right now my RFP is pretty much stable. I have 40 degrees of peripheral vision. So I’m not that too far from legal blindness. I do now have a profound hearing loss and I can definitely identify with this lady right here, in that when I had a minor hearing loss I was still able to learn how to play the piano. I started playing the piano at the age of 6. That became my instrument of choice, then I was also able to sing. I sing in the church choir. And when I had to audition for music school, they could tell I had a little bit of a hearing loss. But they said you have a nice voice, so we still want you to be part of this national choral event. So I was able to participate in that, so I had always made up my mind that when I go to college I’m going to major in music with the focus being piano. But nobody told me then that my hearing loss was going to get worse. I thought it was stable, but life has a different plan for me. So by the time I got to college, I could tell that there was something different, something that’s going on with my hearing, and as we do, get some stronger hearing aids. Stronger hearing aids, and then things began to sound distorted. By that time, I started teaching piano when I was 16 years old. So I already had my life plan. I was already a music teacher. But by the time I got to college, majoring in music of all fields, I began to see a decrease in hearing. No, I’ve come too far. Four years, talk about Little Miss Beethoven. I’m going to stick this thing out. In my third or fourth year of college, that’s when I got introduced to tinnitus. Constant ringing in the ear. Unfortunately, I had to stop. I had to stop playing piano. The piano that I taught ended up getting moved to the back room, collected dust. I couldn’t play the piano for 20‑something years. But thank God, three years ago, I received a cochlear implant in my right ear, and that has opened the door for me to me playing the piano. According to my husband there in the black shirt, you need a little more “work” with that.

[Laughter]

Just stay on the piano. You’re doing great with the piano, but, not with your ‑‑ that’s coming. I can also identify with what she said, with how when you play the piano, you can’t tap your hand. That’s the reason why my name is not on the open mic list and Dawn said I could do it. Back in April ‑‑ I don’t know if you can all see this long line on my hand. I fell and I shattered my wrist. I shattered it. And when you see this long line, that means I have a plate with screws in this wrist. So four months of intense recovery. I’ll never forget when I had surgery. They asked what do you want me to do? I said look, I couldn’t play the piano for 20‑something years. I just got back on this piano three years ago. I need you to save my hand. I said I’ve come too far. I need you to save my hand. He saved it and I’m back playing the piano. So if it’s not my ear, it’s my eyes, and if it’s not my eyes, it’s my hand. One thing you have to learn is to persevere in spite of it. Hang in there. Hang in there. For those of you who are discouraged, you don’t know how life is going to turn, just remain encouraged. Like I said, I have motivation and I thank God for my husband who has been a great help. But anyway, that’s my life story, and I forgot to tell you I’m from Norfolk, Virginia. And I’m thinking about getting my other ear fitted with a cochlear implant.

ROCHELLE DRUCKER: Hi, I’m Rochelle Drucker. I’m originally from Massachusetts but I’ve been living in Florida for the past 28 years. I was an elementary school for deaf children in Florida. I retired three years ago. I lost my hearing, my hearing loss was discovered at the age of 8. The school nurse came to test my hearing and she completely shut off the machine and I raised my hand and I said I was hearing something. And that’s when they discovered I was deaf in my right ear. I still had hearing in my left ear. And my dream was to always play the piano, so I started taking piano lessons. And I continued playing until the age of 14, and then I realize ‑‑ by that time I was also deaf in my left ear. And I realized I wasn’t able to distinguish the tones on the piano. It was like the melody was being drowned out by the chords of the ‑‑ so I got frustrated and dropped it. Fast forward to now, I’ve retired. I’ve always wanted to play the violin, and I’m retired I thought, so why not give it a try. So I met this fellow teacher who wanted to give me free lessons. And I started playing about eight months ago. So I’m still learning muscle memory and all that. And I get frustrated. I get frustrated with it a lot. But I wanted to do this. So one reason I came here is to meet other people who are in the same boat. And I need to find out if this is really a fantasy worth pursuing or if it’s something that’s a waste of time. That’s why I’m here and I hope to meet you during lunch. Thank you.

DEBORAH MCCAW: OK. I’m very mindful of time. It’s about 12:20 and I expected this introduction to maybe last five minutes. And clearly everybody has a story to tell. We’re all here because we have a common story, and it’s a story that’s close to our heart. So what I was thinking we would do was we would finish the last few people involved and then I will take this information that we have here already, since it’s about ‑‑ very fascinating and touching information that would also help guide future studies. So we don’t necessarily need to pursue the questions I was thinking about today. Thank you for sharing your stories. I hear everyone’s story, I feel like my own. So it’s very nice to hear that. So we have I think four more people here now.
SONIA: And mine will be short. My name is Sonia and I grew up in Tennessee. I don’t have a hearing loss. Rochele and I were college roommates at the University of Tennessee. At that time she didn’t have a cochlear implant. Long story short I got into deaf ed because of her. Haven’t seen her since 1992. The last time I saw her I was using sign language with her, and now I can just talk to her. She’s got a cochlear implant. She’s learned to play the violin ‑‑ learning to play the violin. I want to say I don’t play, I’ve always sang as an alto in choruses in choirs, but after hearing you guys I’m going to learn how to play an instrument.

NANETTE FLORIAN: I’m Nanette from Connecticut and I’m a pop musician. I never learned formally. They tried to get me to go to Hartt School of Music. I respect so many of you for doing what your teacher told you to do‑‑ I didn’t want to do what she told me to do. I just wanted to go home and do my own thing. So I never learned formally. Basically I play by ear. I do read music but I play by ear. My thoughts wander when I’m talking. But my big thing I used to do is I sang and play the piano. At the pinnacle of my career that’s what I did best. I would sing and play at the same time. I would play piano at bars and whenever I could get jobs and for anyone who wanted to hear. One thing I can’t wait to do is I’ve already downloaded the tuning app, and I can’t wait to try to start placing my voice on tune again because I really miss it. I play the piano because my hands know where to go. I can play the piano in my sleep. Sometimes I don’t know if any of you have this experience too, but I can play a table in my dream and I can get music to come out of it. You ever have any of those?

[Laughter]
But since I can’t sing anymore, I started writing music. Composing songs. That was something I always wanted to do. So I encourage everybody, to find something. If you can’t do something [addressing Angela] oh, you were talking about your right hand having trouble. A thought that came to my mind is start doing something really cool on the piano with your left hand and you’ll probably develop some new sound nobody’s ever done. There’s always something we can do. So that’s my story for now.

 

MANDY HARVEY: Hi, my name is Mandy and I am from Florida/Colorado. It kind of depends on what day. I went to school for music. Grew up hearing. Had some ear infections and surgeries and stuff as a child, but grew up hearing. And lost my hearing in nine months. So I am profoundly deaf in both ears and Jay and I share the “I don’t know exactly what happened, but it happened and I can’t change it” diagnosis.

[Laughter]
I sing professionally and play the ukulele, a little bit of piano and guitar, but mostly sing.

CHARLES MOKOTOFF: Hi, I’m Charles. I live around here in Potomac. I’m going to keep this really brief because I’m presenting in about an hour. My audiogram will be on the screen.

[Laughter]
You don’t need to hear this from me now, and you already heard from Jennifer, so we might be actually done!