Blindness separates people from things, deafness separates people from people.
— Helen Keller

Superlawyer, Musician, 70's, Meniere's Disease.

 

What was the moment that you realized you had a hearing loss?

I would say it’s about five or six years ago now. I was having trouble on the phone. I was just 76 this week, so it was about when I was 71, 72 years old. So I decided that maybe I should go check out and see if I need to get some assistance, and I had an interesting experience.

Before then, there was a couple times when I felt really, really dizzy, the room was spinning around, that sort of thing. One night, I was sitting at the table with my wife when that happened and she said, "You know, this has been going on for some time now, you should go get it checked out." So we went to my regular doctor and they said, "Well you probably have benign positional vertigo. But the symptoms are also symptoms that can be perceived as strokes, so we want you to have some MRIs and tests done."

Then I went to the ENT in Berkeley, Dr. Rice, and I filled out all the forms, your medical history and everything. I filled it all out and they gave me a hearing test, but then I told Dr. Rice, "I forgot to put on my form that about five, six months ago, I had this dizzy attack and I went to my doctor and they said I have benign positional vertigo." And he said, "Well we know -- you have Meniere’s disease (laughs). I want you to go on the Internet when you have time, and read up on Meniere’s disease." The vertigo, it's caused by Meniere’s disease.

So at the time, the vertigo was a bigger issue than the hearing loss?

Well, at the time the vertigo was not such a big deal, I was just feeling dizzy. It was on my birthday that year, my 72nd birthday… I had a very intense day and my wife and I went to dinner at a very loud restaurant, and after that we were supposed to go to a little opera that was being performed in a church just out here on South Van Ness. We came out of the restaurant and I had to grab a pole to hold myself up, I was feeling really dizzy. We went over to the church where they were having it and I tried to sit, and I just couldn’t sit. They had these old benches on the side, these pews they had moved, and I’m lying there and thinking that these people must think I’m some kind of drunk or something.

I'm lying there and thinking that these people must think I'm some kind of drunk or something.
 

And well, the long and short of it is that during the whole opera I had to lie down. It was two short operas and during the intermission I went outside and laid down on a vent from the heating system because it was so chilly, even though I couldn’t get up. If I got up I would feel like I was going to fall over, I was so dizzy. Someone helped my wife get the car and she got in the car and she drove me home, and when I got out of the car there was just a horrible scene of puking. I was having my first really real vertigo attack. I had about five of those in that year. Dr. Rice said they would most likely burn out. The last of them was October about five years ago.

The problem with Meniere’s is that it causes your hearing to fluctuate. But eventually my hearing tests stabilized enough so I could get hearing aids. The audiologist I’m working with said that I probably have the most severe fluctuations of anyone she had ever seen. She had to look at my chart to make sure that she's talking to the same person.

How have you been dealing with the hearing loss?

So I got these hearing aids, and one of the things I’ve done is join the Hearing Loss Association. I go to the East Bay Chapter. Especially for people who have late-onset and aren’t used to what’s going on, this is really, really the best thing to do. We have maybe forty, fifty people come to each of our monthly meetings. As you know, everybody is unique so you start learning what people do, and we have programs on how to cope, and we have psychologists, psychiatrists, a disability rights lawyer, and of course lots of programs for people to talk about their own experiences, what works, what doesn’t work. We had a guy come in and make a presentation on all the available technologies. He’s an engineer who had a recent onset of hearing loss, and so being an engineer, he puts on all the stuff, tries it all out, knows what’s happening, and why it’s working, why it’s not working, and he actually said the Roger Pen is the best thing available.

I’ve found it (Roger Pen) helpful in my practice. Meetings of four five people, you have a lot of people talking at once. I put this on the table and I can be much more into the conversation.

Was it difficult the first time following the group conversations?

Oh yea, we have meetings in here – we like to use the term “lunch” – we have about seven to eight lawyers, but if we had 12 people in here – forget it. I can maybe hear the person next to me.

If we had 12 people in here – forget it. I can maybe hear the person next to me.
 

Does that make you anxious? Because you said that you like the smaller firm side because of connecting with theclient and helping them, so the hearing seems like it would impact that a lot.

Yea, it does, but the interpersonal stuff I’m getting used to, I know what I can do, what I can’t do, what will work, what won’t work. At first, of course, I got frustrated a lot. I also thought when it first hit me, I was thinking, "Well oh yea, I would have this problem for a few months and then everything would be fine," right?

My biggest disappointment is that I’ve always been involved in music. In fact, I almost went into music as a career. But I realized I would have been fourth chair in some orchestra (laugh), and eventually I saw my music teacher coming – this was back in the fifties – he drove to my house and gave me lessons there, and he showed up in a pre-World War II car, and I’m looking at that thinking, "This could be a very difficult life (laugh)! I would eventually grow to hate music because I can’t have a decnent life with it!"

But nevertheless, I always played violin, viola, baritone horn, I was in quartets and orchestras and all this all the way up until I became a lawyer and then I just didn’t have much time for it. But then I went to the opera, was always a subscriber, often go to the symphony, loved choral music, chamber music, all this stuff – I can’t do music at all now. I can’t listen to music because it’s just a bunch of sound. And it’s even worse because I know what it’s supposed to sound like.

I can’t do music at all now. I can’t listen to music because it’s just a bunch of sound. And it’s even worse because I know what it’s supposed to sound like.
 

My wife was saying, "Well you know, you can just go and enjoy some of it," and I said "No…" She’s an art historian, very, very good artist, all the art around here are hers – I said, "You go to the Metropolitan Museum of Art, or MOMA, something like that, and put a piece of wax paper over every painting that you’re going to look at: that’s what I’m getting. Do you think that’s enjoyable?" (laughs).

I said, "You go to the Metropolitan Museum of Art, or MOMA, something like that, and put a piece of wax paper over every painting that you’re going to look at: that’s what I’m getting. Do you think that’s enjoyable?"
 

And she’s okay, she still goes to the opera, but uh, that to me is the biggest, biggest loss. Because that’s a permanent loss, I will never be able to enjoy music again. But as far as talking to people, there are ways to cope.

And you’re good at advocating for yourself?

That’s the thing you gotta learn.

So what tips do you have to that end? Especially when with clients, you want them to perceive you well.

(Deep sigh) I’ve learned through this experience, what it is to have a disability. I’ve never had – never even thought of having – a disability. These are things that other people have. People who aren’t quite as well- “constructed” as I am (laughs). But at the same time and through some of the stuff that I’ve learned at HLAA meetings and all that, is that you really do need to be assertive. And then when I learned that, I also learned that people, 99% of people, in fact I don’t know if I’ve ever run into somebody, who wouldn’t accept the situation and say, "Okay, what can I do to help?"

Now I just tell them I have a hearing problem, and now that I have a Roger Pen, I tell them it’s not a recording device! (laugh) I also tell them if I leave it on the table and leave the room, don’t talk about me because I’ll be able to hear everything you say about me! (laugh)

I’ve learned through this experience, what it is to have a disability. I’ve never had -- never even thought of having -- a disability. These are things that other people have. People who aren’t quite as well- “constructed” as I am.
 

How did it feel when that was suddenly something you now faced?

I would say it was close to devastating. Especially with the – I still get emotional about the loss (tearing up)... 

But, the other thought is, gee I’m no better than anybody else, I have a disability. Seventy years of my life, I never had health problems. I did have a hip replacement, but that sort of an experience, I really had to rethink my self.

It was close to devastating. That sort of an experience, I really had to rethink my self.
 

And one thing I’ve always had is a pretty good self-image, "I can handle things, so that helped a lot". But then it also helped a lot for other people to tell me, this is what you need to do, don’t hold back, tell people, and start reading about all these things, and learn about it. But it took a couple years I think before I felt comfortable with the, “I can cope with this, I can live with this, and I can have as an enjoyable life as I did before, I just have to redirect some things”.

If you don’t mind me asking, when was the most painful moment of that?

I would say that the emotional times were the first meetings I went to with HLAA. I know it’s like 30% of the hearing loss people in America are of 60 years of age or older which means that 70% of people are younger folks like you. But the HLAA group is primarily older people. I don’t know why that is. And here I’m 70 – I’m 76 years old now, and I would say I’m not up to the median age of my group – so that was kind of depressing. Oh, now I’m joining these bunch of old fogies, “disabled people”, tottering around and all that, so that was a really gut-wrenching experience.

I’m joining these bunch of old fogies, “disabled people”, tottering around and all that, so that was a really gut-wrenching experience.
 

Because you didn’t feel old…

I didn’t feel old, I didn’t feel like I should be part of this group, they have a disability, I didn’t, this is all going to work itself out I’m sure, that sort of attitude. But then I started learning more about hearing loss, who has it, what causes it, and there’s like a gazillion reasons why people have hearing loss.

My wife was very supportive. On this end, we had to figure out how to deal with it, make it a part of our lives, and one of the things, we had two very close friends who had brain tumors. One of them died, the other one survived. And I would see people and they would ask me how I was feeling, and I said, "Well you know – it could have been a cancer. I feel I’m kind of gifted" (laughs). I try to approach it from the positive side. If this is the worst thing that’s going to happen to me, I’m pretty lucky. And I think that helps a lot, you know?

If this is the worst thing that's going to happen to me, I'm pretty lucky. And I think that helps a lot, you know?
 

Where in your life has it impacted the most, the hearing loss?

Well of course the music is the most important. We don’t go much to restaurants. Even movies are difficult for me. So going to a big party (laughs)… unless it’s a place where you can go out on a balcony where there are only a couple people... It really has impacted our social life to a significant extent.

So it’s affected your wife as much as you…

Yea, I now tell people I think that the person who lives with the hearing-impaired person has a harder time with it than the hearing-impaired person. I know what the problem is, I know how I can ameliorate it and deal with it and all that, but my wife is sitting there, just wondering why the hell I’m not answering her.

I think the person who lives with the hearing-impaired person has a harder time with it than the hearing-impaired person.
 

Has that caused a lot of strain in the relationship?

It did in the beginning. Um… (pause) but this [Roger Pen] has been a big help. Now, when we’re at home she wears it and we keep it on. Now she can call me when I’m upstairs, “Come down here, we’re having dinner” (laugh).

Now she can call me when I’m upstairs, “Come down here, we’re having dinner.”
 

Yea, it’s amazing how difficult it is to hear someone who is not in the room. Other people take that for granted.

Yea, well even in the room. One of the articles I read was by a hearing-impaired guy who is a specialist in hearing, and he said that it’s something like eight feet away your hearing ability, your understanding ability, drops off precipitously. So if my wife is across the room from me and she’s talking to me, even the slightest bit of outside noise, something boiling on the stove, forget it, we can’t talk because I just couldn’t hear her. So that [Roger Pen], that’s helped a lot.

We’ve only had this for two or three months now. The day we picked it up we went to this place in Palo Alto, and we were driving home from Menlo Park and she was wearing it and I was all hooked up, and it was the first time we could have a conversation in the car in five years.

It was the first time we could have a conversation in the car in five years.
 

Wow.

It made that much of a difference. Because otherwise she would say stuff and I would just get a piece of it. With this, we could have regular conversation.

How did that feel?

It was great, it was great. It was like, oh, now we don’t have to just waste an hour in the car sitting there silently, because I can’t listen to the radio much either. So it made a huge difference.

So how has she been dealing with it? Is she coping? What are the coping strategies?

The thing that’s been difficult in our lives is I used to say to my wife: I can’t understand you. And I’m gonna tell you, the closest I’ll ever come to Phi Beta Kappa is being married to one, so it’s a little insulting to say that I can’t understand her when she speaks fluently in three languages (laughs).

The closest I'll ever come to Phi Beta Kappa is being married to one, so it's a little insulting to say that I can't understand her when she speaks fluently in three languages.
 

So we’ve agreed that I just now say I can’t hear you, even though you know and I know that I can hear her, but it seems better to just say that I can’t hear her most of the time. So it’s little things like that that we’ve had to adjust to.  I think it’s very difficult for someone who hasn’t had the hearing impairment to understand that we can’t understand them even though we can actually hear them. It just seems so bizarre, you know, why don’t you understand me?

Does the fact that people tend to not understand you, impact how you felt about things?

At first it did but as I learned what was working, what wasn’t working, what my impairment was and how it was, I learned to tell people that one of the things about a hearing impaired person – and this may sound bizarre – is I can probably hear you but because of the parts of my spectrum of sound that are impacted, I can’t understand the consonants. And if you look at a sentence that’s written all with consonants you can understand what it says, it can have not one vowel. But if you put a sentence down that’s all vowels, you’d just have nonsense – no clue what it is. I can’t get the consonants when I’m not standing right next to you with you speaking right into my ear. So, if you understand that you’ll understand why I’m having the problem.

I think being assertive with your problem is the most important thing for a hearing impaired person, I really believe that. And again, most people don’t have any problem with it. And I don’t think they think less of me. I’m not one of these people who thought, "Oh gee I got to hide the fact that I got a hearing impairment because people think I’m an old man" – well hell, I am an old man. But even besides that, I don’t think it has anything to do with my overall competence, it’s just one area of my ability that’s impacted. And you and I have to work on that.

It's just one area of my ability that's impacted. And you and I have to work on that.
 

That’s really healthy.

Well, yeah.

And that’s the way you felt from the beginning?

Well no, from the beginning I thought, "Gee I don’t know what I’m going to do. What if my clients find out if I’m hearing-impaired? And what if they don’t want to talk to me?" I had problems on the phone. So for the first few months, maybe a year or so, I was kind of adjusting. But then I learned that there were ways to improve my ability to understand what was going on around me and get to the point where I could understand everything.

What if my clients find out if I’m hearing-impaired? And what if they don’t want to talk to me?
 

Sometimes I would bring another one of my lawyers into a meeting and ask them to help me. If I had a person that had a very, very soft voice, I’d have someone come in and get them to sit with me. I’d turn and ask, “What is he saying?” But that’s difficult in the practice, because we work, we’re selling our time and I have to have another lawyer there. Though often it wouldn’t be a lawyer -- I’d bring in one of my assistants, because that billing rate… So that was a difficult thing. But this (Roger Pen) has helped a lot, I don’t need to do that anymore.

So what do you think this whole experience has taught you about life and in general?

So I would say in a one sense more humble, realizing that I’m like everybody else, I can have a disability. And at the same time, being more aggressive and assertive and more competent in a sense by taking charge of the situation, and making the best I can out of it instead of just sitting there and feeling sorry for myself. I try to avoid feeling sorry for myself. Every time I get that impression, I think of my friends with the brain tumors. I say, "Thank god, I would much rather be me than that one who is not even here anymore or that one who got the serious disability, that’s much more impactful on his life than what is impacting me."

So I would say in a one sense more humble, realizing that I’m like everybody else, I can have a disability. And at the same time, being more aggressive and assertive and more competent in a sense by taking charge of the situation, and making the best I can out of it instead of just sitting there and feeling sorry for myself.

Programmer, Father, 40's, early onset: Cause Unknown