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

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

Tell me about your hearing loss experience.

I’ve always known since a young age. I was constantly going to an otolaryngologist and seeing that the normal hearing loss goes straight across and mine dips dramatically in the middle. The red line dips lower than the blue line; my right ear is worse than my left. My lower range is about normal. Around 2000 Hz – 6000 Hz, there’s a big valley and that’s where a lot of speech is. Above that [range] it’s lower than normal, but it rises back up. So the bulk of my hearing loss is in – I wouldn’t say the entire speech pattern, but a significant portion of it. So there are people who talk higher and I can’t hear them. If someone has a really deep voice, I have no problem hearing them at all. And I, not really knowing this, I’ve learned to kind of read lips, not completely, but I just augment what I can’t hear. I make sure I watch the person’s mouth if they’re not speaking loud enough.

There are people who talk higher and I can’t hear them. If someone has a really deep voice, I have no problem hearing them at all.
 

You never faced any struggles with school or anything like that, keeping up?

Definitely if someone’s not talking loud enough, I’m like, "what? what? what?" But to me, obviously it’s your fault for not talking loud enough.

I didn’t have a traumatic event that took away my hearing. I think that having tubes in my ears might be the cause of my hearing loss, but I can’t really know that. That happened when I was really young, so I don’t remember a time when I heard “normally” and then all of a sudden, I didn't. It’s just always been that way so that’s normal to me, right? (Laughs) I don’t know how else to describe it. I don’t know what normal actually is. I know my normal.

I don’t know what normal actually is. I know my normal.
 

My hearing loss is not normal in my left ear but it’s close enough to normal. Let’s say I’m walking with someone down a sidewalk and talking to them, I’d go on their right side. If they try walking on my right side, then I will just step back and walk behind them and just skooch them over. If they say anything, I’ll tell them, "This is my good ear."

When I was in my mid-twenties – this was mid-nineties, late-nineties – I’m pointing out the time frame because cell phones were around but not everyone had them and desk phones were ubiquitous. Like right now, if you asked me for a desk or office phone, I don’t know if we have one. I don’t know if you could call my work, you could call my cell phone number, right? That’s how today is but at that time, in talking to clients a lot, I’d be on a desk phone, or I’m phone interviewing a programmer, I’d be on a desk phone. I’d always put the phone to my left ear. I’m also left-handed so I had always thought, "Oh that’s where the phone goes," but the thing is I can’t put the phone to my right ear because I can’t function.

This really dawned on me over the course of maybe six months: I was on a desk phone so I had a handset covering my left ear. If someone walked into my office and started talking to me, I will see them talk but I couldn’t hear them. It wasn’t that it was silent – I would just hear more of a Charlie Brown wah wah wah. And, you know, given my whole childhood and adulthood up to that point of understanding that what’s here [ears] is normal – that concept in my head – at first it took me a while to realize, "Hey I can’t hear out of my right ear." And the reason is because someone would come into my office and I would just be like, "If you’re trying to talk to me speak up!" And they would be like, "Uh, I am…" And the conflict finally caught up to me of like: wait… if I cover my left ear, I just can’t hear.

Given my whole childhood and adulthood up to that point of understanding that what’s here [ears] is normal – that concept in my head – at first it took me a while to realize, "Hey I can’t hear out of my right ear."
 

So in my late-twenties I got my first hearing aid, and I was reluctant because I had gotten by. I think I was twenty-eight – I had gotten by for twenty-eight years, surviving a normal life, you know, with everyone around me – except sometimes, especially with certain people, I would say "what" a lot.

I had gotten by for twenty-eight years, surviving a normal life, you know, with everyone around me.
 

I knew I had hearing loss in both ears. It’s a lot worse in my right ear, so I got one hearing aid in my right ear. When I first got that hearing aid and I put it in, it was overwhelming. I felt like everyone was screaming at me. The two things that I noticed almost immediately that was just kind of like shocking was, when you scratch on jeans, that actually makes a sound. As soon as I brushed my jeans, I was like "What is that!? What the hell is that!?"

For the first few week, I would be walking and I would brush my hand against my leg and I would be embarrassed, like "Oh my god, I’m making this horrible sound, and obviously everyone hears this also." And everyone’s like, "Uh no that’s normal" – I had just never heard that before. So that was just like, okay, I need to get used to that.

When you scratch on jeans, that actually makes a sound.
 

When I put my hearing aid in, that first one, and I came home from the hearing aid center, and I had this in and I’m like trying to get acclimated and adjusted to my environment without freaking out. I was in the bathroom and I turned on the water faucet, and I started crying. Because the, um [sound of running water] (tears up), it was so musical… and I had never heard it before. And I was like, holy shit! I had gone my entire life without ever hearing that. Everyone hears this and is like, "Oh whatever." It’s really overwhelming. Something so simple… I didn’t know what I was missing out on.

I was in the bathroom and I turned on the water faucet, and I started crying. Because the, um [sound of running water] (tears up), it was so musical… and I had never heard it before. And I was like, holy shit! I had gone my entire life without ever hearing that. Everyone hears this and is like, "Oh, whatever." It’s really overwhelming. Something so simple… I didn’t know what I was missing out on.
 

Did you have any particularly traumatic moments with the hearing loss? It seems like you adjusted to it pretty well, but…

I would say I definitely did adjust to it because it had always been that way, or it had always been that way as long as I could consciously remember it. I don’t remember having a loss. To me it’s not a hearing loss, it’s like my hearing is bad, right? I don’t have any way of experiencing what other people hear. That’s my reality.

To me it’s not a hearing loss, it’s like my hearing is bad.
 

It’s kind of like, I have friends who are colorblind and well, I could describe to them what the difference between red and green is but that doesn’t make any sense to them because they don’t have any way of seeing those things. In their world, red and green are the same. For me, until I got a hearing aid, my world is that things like scratching your jeans doesn’t make a sound or the leaves or a fan or an air conditioner… they just don’t make sounds, and that’s normal to me. 

Why don’t you wear your hearing aids?

I go for long spurts where I wear them all day long, from the time I get up in the morning to the time I go to bed. They actually get loud. I get used to it and it’s loud and everything is loud all the time. Actually though, if I go into a loud environment, let’s say, a convention, or a restaurant where there’s not good sound insulation, or a bar, I need to take them out because I can’t hear.

You find that you can hear people around you better without them on?

Yes. If everyone is talking it seems to me that what happens is that the hearing aids has a safety, amplifying noise up to a certain level, so if the environment gets really loud it kinds of deadens all sound. Basically, I’m getting everything amplified up to a certain point and only that point. So even if there’s someone even right in front of me, I can’t distinguish them from the people at the table next to me, so I just take my hearing aids out and I can actually hear better that way.

My first hearing aid would have a problem all the time where when if I was eating they would just squelch because of my jaws moving; it was just squeak squeak squeak, so I would just take it out every time I would eat. But the two I have now, they don’t have that problem except for rarely so I don’t have to worry about that, but over a long enough period of time it’s possible that my hearing actually gets a little better or I just get more sensitive because they get loud. The past two or three weeks I’d been seeing how long I can go without wearing them before running into some problem. I just want to know. I don’t know if my hearings improving really, but I think I am more sensitive to what I do and don’t need to hear.

Even if there’s someone even right in front of me, I can’t distinguish them from the people at the table next to me, so I just take my hearing aids out and I can actually hear better that way.
 

You don’t face that many problems at work? What do you do?

I remember about five years ago I had worked on this project on this team, there was another programmer. It was a guy but his voice was a little bit higher than normal and he would also speak really softly, kind of like this (whispers), and I would avoid talking to him at all because he would not talk loud. I would ask him if he could speak up and he would speak up just barely and after a couple sentences he would just go back to his normal softness, and I couldn’t hear anything he said at all. I would just try to only communicate with him by email or text or chat. He would sometimes just come over to my desk and be like, eeeurrrgggg (warbling sounds), I was just like please, make it short, make it quick, hopefully I can guess what you mean or just like nod my head and get through this conversation and I’ll try and follow up with an email to figure out what you really said to me, because I just couldn’t hear him at all. 

He would sometimes just come over to my desk and be like, eeeurrrgggg (warbling sounds), I was just like please, make it short, make it quick, hopefully I can guess what you mean or just like nod my head and get through this conversation.
 

This is the only time this has happened?

Yes, because his entire voice fit in my valley. There are people that maybe part of their voice I can hear and part of their voice falls off into what I can’t hear, and so I can muddle through what they’re saying, but certain words or certain sounds, maybe s’s and p’s, I just don’t hear.

How does the muddling through make you feel?

Uhhhhh, it can be embarrassing. It feels like I’m being a burden. I can try to answer this in a different way though because my mom has worse hearing problems than I do. And she wears, has worn, hearing aids for as long as I can remember. She wears them in both ears, and they are loud. Even with her hearing aids in, she wants the TV to be turned up so loud that I just don’t even want to be in the same room with her.

When she’ll come visit or we’ll go on a vacation together or something like this, she’ll get up in the morning or she’ll be getting ready for bed at night and she’ll take her hearing aids out, or she’ll get up in the morning and she doesn’t have her hearing aids in – I’ll get her coffee and she’ll just start talking to me. I just kind of nod my head and walk away from her.

Mom, I don’t even want to talk to you, just don’t even bother, because I’m going to say one sentence, and you’re going to say "What?" And I’m going to say it again, and you’re going to say "What?" And I’m going to scream it at you, which me screaming actually makes me angry, and it’s pointless, it’s worthless, it’s taking me, every sentence I say, I have to say it five times, even if it was just small talk and there was no meaningful anything in that thing I just said, she can’t seem to follow the cues of just oh hahaha nod your head, and stop asking me for the exact words I said, it doesn’t matter, it really doesn’t.

And then sometimes, I’ll say something and she will try to guess what I said, and then she will assume that I said what she guessed. She is completely wrong – the meaning of what she thinks I said is conflicting with what I actually said. I just shake my head and sigh and say, "You know what Mom, I gotta go, I can’t." I want to be able to talk to my mom, but I don’t actually want to talk to her most of the time.

I want to be able to talk to my mom, but I don’t actually want to talk to her most of the time.
 

So having this relationship, does that affect how you perceive yourself?

Yes. If I am having a conversation with someone and for whatever reasons I’m not able to understand them, or I'm not able to hear everything they’re saying, I’m really sensitive to if I’m asking them to repeat themselves. And if I’m asking them to repeat themselves, I will usually try to in some way get out of the conversation because I don’t want to be a burden or a bother. And sometimes I can’t avoid that so I will try to gauge vocal tonality: was that small talk or was that something important? If that was small talk then I will just do the, oh haha oh yea (fake laugh). Maybe a little giggle or maybe a nod of the head, just a slight reaction, and I’ll wait and see if I really needed to understand that or not and if I needed to understand that then I’ll try to find some way to.

If I’m asking them to repeat themselves, I will usually try to in some way get out of the conversation because I don’t want to be a burden or a bother.
 

If I know that my hearing loss is making it difficult for other people to talk to me that seems like that’s my problem, that’s not their problem. In general, I’ve found that even if I ask people to speak up, most people can’t. In general people will talk louder or softer for their own reasons. Like I was describing with my mom, if I have to yell, yelling is to express anger. The way that we work emotionally, if you start smiling for no reason, you will feel happy. The brain is constantly trying to figure out what’s going on with you, and interpreting what’s going on in that way. So if you start yelling, indirectly that makes you angry, because your brain is like, "Oh, you’re yelling, you must be angry." It works both ways: you’re angry so you’re yelling, or you’re yelling so you must be angry. If I ask someone to speak up, they can try for maybe thirty seconds, and then they just can’t focus that long on changing what they’re doing. As soon as they are engaged in what they’re talking about again, they go back to whatever their normal speech patterns are.

If I ask someone to speak up, they can try for maybe thirty seconds, and then they just can’t focus that long on changing what they’re doing. As soon as they are engaged in what they’re talking about again, they go back to whatever their normal speech patterns are.
 

Do you blame yourself for not being able to?

Yes, but I wouldn’t say “blame”. I would say, if you separate out perspectives, it’s not their responsibility to do something abnormal to accommodate me. So I need to figure out how to make sure that I’m not constantly being a burden.

It’s not their responsibility to do something abnormal to accommodate me.
 

How does it feel to be a burden?

Um… Ugh… Uh… (laughs) I get it, you’re trying to get these feelings out of me!

Well, just imagine these people who might be reading this interview right? For me, as someone who is entering the workplace with this problem, I also feel like a burden, and it’s really difficult to ask for what you need and it can affect your feelings of competency – 

It can, but it doesn’t have to. Like I mentioned, this guy that I worked with, I couldn’t hear him at all... I would definitely say that it has affected my work. It has negatively impacted my work. Because I would have times where I needed to go and talk to him and ask him about a system he had developed or something he acknowledged on a call that I needed to understand because it was blocking something I needed to do. When I needed to do that, it was really difficult for me. Because he did not have the ability to speak loud enough for me to even understand half of his words.

And ultimately, as I’m describing, the hearing aids that I have now, it seems like, as best I can tell, they make it so that I can hear normally. I don’t really know. But as best as I can tell, I hear what other people seem to hear. And in some cases, I hear what other people don’t seem to hear. Which is kind of cool (laugh).

I think that if I didn’t have the ability to have hearing aids, that would cause me some blockers. That would force me to try to force some people into only engaging with me by email or chat. And that would… Actually I’m going to switch to different analogous situation:

I don’t drink. I stopped drinking nine years ago. And so I will be in situations, sometimes at work, where my coworkers –  like I was recently on a trip to London to go and meet a developer we were working with. Every night we went to a bar or to a club for some drinks. So if I’m too stodgy about, oh I don’t want to go to a bar, I don’t drink. If I say that or do that, there’s a whole branch of sociality that I’m not a part of that I should be a part of because that’s actually part of having a good working relationship with people, to bond with them in some way. So I definitely will, when people say, "Hey you’re not drinking," I’ll make a joke about it. I’ll do everything I can to make sure that they’re comfortable with the fact that I’m not getting sloshed like they are. Which is not a problem [drinking].

Similarly, if I really didn’t have the ability to hear well enough, to gauge other people well enough, that would definitely be a barrier of not being able to connect with other people in a way that wouldn’t hinder my business relationships. So I’m glad that I finally got hearing aids, because that does make it so that I don’t have to have that that… what’s the word… handicap, if you will.

If I really didn’t have the ability to hear well enough, to gauge other people well enough, that would definitely be a barrier of not being able to connect with other people.
 

So you wouldn’t label yourself as disabled?

Nope, I have bad hearing, that’s it. Disability is a mental shackle. It’s not a physical problem. So, I don’t have a disability.

Disability is a mental shackle. It’s not a physical problem. So, I don’t have a disability.
 

There is one hearing related thing that happened about ten years ago. I still regret it and I’m trying to see if there’s anything I can do about this problem. I have scar tissues. I have really bad scar tissues on both of my ear drums. I have seen it for myself. Every time a doctor takes an ear scope and looks in my ears, I automatically am prepped with exactly what I’m going to say because they’re going to look in my ears and go, "Ew!", and then I say, "Oh yes I had tubes in my ears when I was a kid, I have bad scar tissues," and then they say, "Yea, it’s really bad."

So my otolaryngologist when I was a child told my parents that when I was an adult, I’d have surgery to remove the scar tissue and that that would improve my hearing. When I was in my early thirties, I went to an otolaryngologist to get to this done.

His reaction was a strong, harsh... [no] (tearing up).

He had me do a hearing test, the inner ear and outer ear hearing test. My inner ear and outer ear hearing loss are about the same and so he was like, "No, your hearing’s gone." And I was like, "But I haven’t had input into my ears." I don’t go around shooting sound into my inner ear. I think that, definitely, if I had the input, I think my brain would pick up on it. I’ve experienced it with the new hearing aid. I can’t sit in a fifteen minute hearing test and go, "Oh the inputs there, and now I can hear!" I have to have the input for a long period of time in order to be sensitive to it.

He pretty much told me, "No, your hearing’s gone, it’s gone, it’s too late. If you wanted to have this surgery done, this is only done for medical purposes, and you don’t have any medical purpose to have this done, I refuse to do it, it would be an elective surgery, you would have to pay for it out of pocket and I won’t do it."

You don’t have any medical purpose to have this done.
 

I have not tried again, and it’s been ten years.

The thought that if I just had this simple procedure done, removed the scar tissue, have normal hearing... and I’ve gone forty years… that sucks (tears), and I don’t know what to do about that. I sense that there’s a possibility   there may not, I don’t know –  but that there’s a possibility that I could have normal hearing. And, I can’t figure out to get anyone to do anything about it.

And furthermore, it seems to me that my hearing loss might be completely because I had tubes in my ear. I can’t help but be angry at the doctors who did that to me. It affects every moment of my life. Could they just have been more johnny-on-the-spot about giving me antibiotics? Would that have made sense? Probably. Could they have cleaned up the scar tissue when I was a kid? Maybe that too. But no, instead I’m walking around constantly with a reduced capacity to interact with my world.

I can’t help but be angry at the doctors who did that to me. It affects every moment of my life. I’m walking around constantly with a reduced capacity to interact with my world.
 

What does this whole hearing loss mean to you, and what have you learned from it? How has it made you a better person, despite engaging in a reduced capacity?

Having a hearing loss has definitely helped me learn how to be sensitive to many other things. More sensitive to what everyone around me is thinking and feeling, not based on what they say or what they look like. Piecing together hypotheses what the other person must be thinking or feeling if they’ve done this or that. I’ve done a lot of that in my life just because I haven’t been able to rely on my hearing.

More sensitive to what everyone around me is thinking and feeling, not based on what they say or what they look like. 
 

I think I’m able to navigate lots of different environments in my personal and professional life – let’s say in my professional life, I’m able to come into a situation where I’m working with someone and something’s not going right but I can understand that they’re actually nervous about their job. Like if we change it in this way, then that guy doesn’t have a job to do. So I’ll find a lot of times that if I perceive something like that, I will steer things differently to make sure that I understand, saying, "Well hey, if we do it this way, you’re going to have to pick up a lot of these tasks, and you’re gonna have to do this." Sometimes I find that I don’t have to tell the other person what I think they’re feeling, I can reassure the things they won’t say and also make smart moves to deal with that.

I can reassure the things they won’t say.
 

Good skill.

Lawyer, Inventor, 70's, Early On-Set: Cause Unknown

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