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HealthIamA profoundly deaf male who wears cochlear implants to hear! AMA!

May 31st 2017 by _beerye • 41 Questions • 2792 Points

Hey reddit!

I recently made a comment on a thread about bluetooth capability with cochlear implants and it blew up! Original thread and comment. I got so many questions that I thought I might make an AMA! Feel free to ask me anything about them!

*About me: * I was born profoundly deaf, and got my first cochlear implant at 18 months old. I got my left one when I was 6 years old. I have two brothers, one is also deaf and the other is not. I am the youngest out of all three. I'm about to finish my first year at college!

This is a very brief overview of how a cochlear implant works: There are 3 parts to the outer piece of the cochlear implant. The battery, the processor, and the coil. Picture of whole implant The battery powers it (duh). There are microphones on the processor which take in sound, processor turns the sound into digital code, the code goes up the coil [2] and through my head into the implant [3] which converts the code into electrical impulses. The blue snail shell looking thing [4] is the cochlea, and an electrode array is put through it. The impulses go through the array and send the signals to my brain. That's how I perceive sound! The brain is amazing enough to understand it and give me the ability to hear similarly to you all, just in a very different way!

My Proof: http://imgur.com/a/rpIUG

Update: Thank you all so much for your questions!! I didn't expect this to get as much attention as it did, but I'm sure glad it did! The more people who know about people like me the better! I need to sign off now, as I do have a software engineering project to get to. Thanks again, and I hope maybe you all learned something today.

p.s. I will occasionally chime in and answer some questions or replies

Q:

Is music pleasant to you?

A:

I love music! I listen to pretty much all genres, except country (mehh). In order to sing in tune I match pitch. It's hard for me to tell why octaves played together sound fine, but not if you played two notes right next to each other (like on a piano).


Q:

OP pls. You mentioned noise cancellation. Does this effect music nearby?

A:

What do you mean by music nearby? I can listen to anything and have the sound go 100% to my brain with no outside noise.


Q:

Do you get shunned by others within the deaf community for choosing to have implants versus those who chose not to?

A:

There is a lot of debate in the deaf community what you should and shouldn't do as far as dealing with hearing loss goes. I have had a couple interactions with those who sign saying that it's part of the culture, and I should know how to sign. I still don't know how to, but I'm sure that I will learn someday.


Q:

How do you feel about your implants? Do you consider it a disadvantage, or do you like the way it works? Would you rather have "normal" hearing? I think some of us are a little jealous of your bionics. What are the downsides?

A:

It's come to be a part of me that if given the opportunity to have normal hearing, I'm not positive I would take it. Being deaf has definitely shaped my character. Downsides are I can't quite hear as well, so conversations I can miss some words and will have to ask someone to repeat something that a normal hearing person probably would have caught. A lot of opportunities are basically restricted from me (jobs, activities), but I have and am making the most of the fact that I am able-bodied and can still enjoy life!


Q:

With a cochlear implant you have NO hearing when they are not in place, correct?

My nephew got his cochlear implants around the same age as you. They knew he was deaf while he was still in the womb. He just upgraded to a bluetooth set as well, and now his teachers wear a microphone thing in class so that it feeds directly to his implant. He's 15. I'm jealous that he can secretly listen to music and none of us know it.

ps. We did a gofundme to get his implants. I'm not sure if everyone is aware but the medical insurance benefits for hearing devices are TERRIBLE. My brother had to pay 11k out of pocket for implants for my nephew. Thanks to generous folks he was able to fund-raise most of it.

A:

Yes, none at all. That's great! Because of the early action, he'll be much better off. And yes, they are really very expensive. At the time costs for both ears were around $10k each. There weren't really things such as gofundme at the time but I'm sure it would have eased the burden on my parents if they could have had the help of more of the generous people of this world.


Q:

I mean this as a honest question, so as a child were you bullied because of your implants? I asked this because there was a movie that came out not to long ago about a girl who was bullied because of her implants, and to be honest that movie was really rough on me and was very depressive but I was just wondering if it was a actual occurrence? I really hope not, and also thank you ahead of time if you anwser and also good luck with everything!

A:

I grew up in the bay area, and the elementary school I went to wasn't the best. The kids there weren't very nice, and I got bullied sometimes. But I moved to northern California and it was life-changing for me. The schools were fantastic and the friends I made there have had a lasting effect on me. I don't know where I would be today if we hadn't moved.


Q:

HELLO - IS YOUR HEARING LOSS GENETIC OR ONLY FIXED WITH IMPLANTS VS SURGERY? ;) CAN YOUR IMPLANT INTERFACE WITH YOUR PHONE?

A:

Don't have to shout, I can read you just fine :) My hearing loss was the result of the combined genetics of my parents. There was a 1/16th chance I would be deaf after my brother was also deaf, but lucky me! The only way I could have been able to hear was through cochlear implants, so I'm glad I was given that opportunity. Cochlear Implants are surgically inserted so there isn't really a "vs" there. They go hand in hand. And no, I use a separate remote to access settings and options on my implants.


Q:

Do you ever get interference on your implants? I would be worried of stray signals, or someone else trying to connect to them.

A:

Nope, don't think it's really possible for that to happen.


Q:

Does anyone tell you you have an accent from being deaf? Not trying to be rude, but I have a couple friends who have the cochlear and still talk differently. An example would be Daphne from Switched at Birth

A:

This definitely happens when someone is implanted later in life. Because I was implanted early, I don't have the speech impediments that many implant users can develop because they didn't make some brain connections when they were younger. Also because they didn't hear what voices normally sounded like for a while.


Q:

What are some of the perks of having cochlear implants?

A:

Some perks are I can turn them off if someone is being annoying :) I sleep like a rock, and can also control my volume. Also, my implants support bluetooth connectivity which has been incredible. It's basically flawless noise cancelling.


Q:

You turn them off when you fall asleep?

Isn't that taking a leap of faith every night?

A:

It kind of is. I've spent lots of nights staying awake in bed wondering if robbers are in the house and have taken my family hostage but I wouldn't even know because I can't hear a thing. Luckily nothing of the sort has happened. Yet.


Q:

I'm not sure if this has been mentioned/you're aware, but they have dogs you can get. Like a service dog. My mom just got approved pending the construction of her new house with a yard bc she's in a high rise. Might be something to look into to help with the nervousness about robbers/fires/etc.

Just wanted to say hi, too! My mom and her 2 sisters are all hearing impaired. My mom and her younger sister got their cochlear implants in their 50s. It's so different now than when they had hearing aids. Still haven't gotten used to my mom being in a different room or turned away and still being able to hear me!

A:

That would be pretty cool, I love dogs. It would be a good way for me to not burn down in my own house.


Q:

Can you send an alarm sound directly to your implants?

Also: it is theoretically possible for someone to send a big sound to your mind by hacking your connexion?

A:

I could, but it would mean I would have to have power to my implants all night, and that's not really viable because I need to charge them. In order to wake up I have an alarm clock that shakes my mattress. Don't think it's possible to hack this connection lol


Q:

I hear a white noise when it is very quiet at night. what do you hear when they are turned off? Not a total silence I would presume, but some kind of noise, right?

A:

Nope. Total, complete and utter silence.


Q:

wow, if i imagine that it seems like it would be oppressive

A:

I think it's quite peaceful


Q:

I've got a couple wet questions for ya. Is the exterior portion of your cochlear implants waterproof or water resistant at all? Are you able to swim, and if so, to what depth?

A:

Love me some wet questions. It's water resistant, (it's supposed to be waterproof but it's not) and can resist rain and sprinkles but doesn't do well with sweat and onslaughts of water. For about the first 16 years of my life, I took off my implants to swim. Cochlear has come out with a little rubber swimsuit type thing that I can slip around the implant that makes it waterproof. It's amazing being able to listen at pool parties now! Depth isn't an issue as far as I know, I went scuba diving in Hawaii a couple years ago! That was with them off though, I don't think I should try it with them on.


Q:

Can you read lips?

A:

Olympic gold medalist in lip reading.


Q:

Awesome you're doing an AMA on this topic.

Do you ever stress worrying about your batteries will die on your implants while you're not near home or a place to charge them? E.g. right before a big lecture for school or something like that.

A:

That can definitely be a point of worry, that's why I make sure to charge them every night. There are also disposable batteries, so if I know my batteries may die, I can use those. If I charge them every night though, I should be fine.


Q:

Do you think in the near future that this could be seen as an upgrade to regular hearing? Some of the things you have stated sound so interesting and extremely useful in everyday life, so I could see this becoming normal for non-deaf people to take this implant.

A:

I wouldn't put it past modern technology.


Q:

Is it often that when people try to get your attention and you don't hear them do to your implants? Has this affected you?

A:

This has happened many times, and it happened a lot more in the past, before my hearing improved through training. I used to not be able to tell which direction sound was coming from, but because brains are amazing it eventually made the connection, and now locating sound and hearing who is trying to get my attention is a lot easier.


Q:

Can you hear me now?

But seriously, what is your favorite sandwich?

A:

What? Can you repeat that?

And I can't give you a great answer right now, but I can tell you my subway order: Deluxe turkey italiano footlong with italian herbs and cheese bread. Shredded cheese toasted. Lettuce, spinach, green bell peppers, jalapeƱos, chipotle southwest, honey mustard, subway vinaigrette, and salt and pepper.

p.s. not sponsored by subway i promise


Q:

How can you set an alarm to wake up early? I assume you don't want to sleep with the device attached to you!

A:

I use an alarm clock that has a vibrating device attached to it that's strong enough to vibrate my entire mattress.


Q:

Do you sign or is your primary communication English?

A:

Because I was implanted so early, I spent only one year in a preschool for the hearing impaired, but was mainstreamed the next year. Have been in a regular schooling system since kindergarten!


Q:

Since signing isn't your primary mode of communication, do you find yourself disconnected from the deaf community? And can you still sign? I took some classes in uni and I can finger spell fine, but I don't know many other signs than the basics.

A:

Realized that I didn't really answer the first question properly. I don't know how to sign because oral is my primary form of communication. I do feel like I don't exactly relate to some of those in the deaf community, but I still am definitely welcomed. All I know how to sign is the alphabet, and some basic words.


Q:

Can you read peoples minds?

A:

Yes.


Q:

Do you get annoyed when people ask you "Are you Deaf" even though they can see that you wear cochlear implants?

A:

I don't get annoyed when anyone asks a question about my implants because it's a topic that too few people know about, and the circumstances are very wide-ranging. I'm happy to answer questions people have about me.


Q:

How was your first year of college?

A:

Fantastic! Hard, but that's because I'm majoring in software engineering and some of these classes are difficult!


Q:

What was your reaction when you where able to hear for the first time?

A:

Because I was so young, I don't remember. My brother was older when he was implanted, and he said that sound had "color."


Q:

How often are you in a situation where there is some awful music playing, industrial noise, or whatever unpleasant sounds going on, and you turn the implants off and slip into blissful silence?

A:

Pretty often actually, and there's nothing more satisfying than doing so. Except perhaps this


Q:

Does it feel peaceful when and know you can just block out the worlds sounds if you want peace and quiet?

A:

It sure does!


Q:

Hey! What is your opinion on the movement to reject cochlear implants in deaf children in order to preserve deaf community culture?

A:

I think that it's a shame because you're not giving your kid a choice. I can't even begin to tell you how many more opportunities I have because I can hear. By not implanting your kid, you're taking that all away, at least the choice to be deaf or not.


Q:

How long does tge battery last and how often/how long do you charge them for?

A:

They last about 20 hours, and I usually just charge them when I go to sleep. I think it takes about 2-4 hours to charge? Not actually sure because I'm usually asleep when they're done charging.


Q:

Are there different grades of deafness? Where does 'profoundly' lie on this scale?

A:

Technically I've been lying to everyone, but when my brother and I were born we had a tiny tiny bit of hearing. We wouldn't have been able to hear an airplane above us though. We originally wore hearing aids, but they didn't work and we hated them. That's when I was implanted and could actually begin to hear. Now as the years have passed, I cannot hear a thing. Profoundly means basically absolutely nothing, which is what I was.


Q:

What do you plan to do with obsolete unmodified humans when cyborgs take over the world?

A:

I plan to obliterate my enemies as president of the cyborgs.


Q:

Would you be offended if someone saw your implant and pitied you for it or felt awkward? Would you rather me talk as fast and slur my words how I normally do? Sometimes I feel like I try too hard and might be patronizing and I don't want that. How do I not do that?

A:

Whatever you do don't exaggerate your enunciation to the point you sound ridiculous. (slowly saying words with your mouth open wide). Doesn't help and it's not necessary. Just speak clearly with good enunciation. Speed usually isn't a problem, just don't slur.


Q:

I read that apparently people who have cochlear implants don't hear as clearly as those who aren't hearing impaired. I know there is a high likelihood of you not knowing as you were born deaf. But do you know - from hearsay - how clear you can hear with the implant comparatively to non-hearing impaired people?

A:

It's impossible for me to answer this question with certainty, but I think that my hearing is quite good and pretty close to normal people. But then again, I can't possibly imagine what differences there could be.


Q:

What processor do you use?

How do you control the bluetooth? With an app or another device?

Any advice on what to get when picking out a processor?

A:

Right now I'm using the Cochlear Nucleus 6.

This is the original comment i made. Link Hopefully that explains it.

Really the latest is what you want, I don't think there's any reason to get a previous model. I would talk to an ENT though.


Q:

Lol! I saw your post in the other thread :)

My question: I have always been curious about learning sign language. I am horrible with languages and it seems like sign would be even worse for me. Is there something you could recommend to someone that is language averse (meaning I just don't get other languages) to maybe get interested and learn sign language?

E: I read farther down. I guess I just assumed your linguistics. My bad. Question still stands.

A:

I'm sure if you take a class and you dedicate yourself, you can do it! I'm minoring in German right now so I can study abroad and maybe work in Germany. If I can do it, you can too! Just takes motivation and dedication. Immersion helps a lot too.


Q:

Do you hear the same frequency range as most adults, or are you able to hear well outside the range 20Hz-20kHz?

Also, I know most people hear a bump around 1-4kHz since that's where the sibilants in speech lives, are your hearing aides programed to boost that range so your hear speech better or do you hear all frequencies relatively equally?

A:

No, I can't hear the same range. I had a dog whistle app that would play a really high frequency that my friends could hear, but I couldn't. I thought that was interesting.


Q:

This may be a silly question but if you had it implanted at 18 months and 6 years, do they have the ability to grow according to the shape of your ears/cochlea? Did you have to go back and have them re do the implant as you grew?

A:

They don't need to be reimplanted because of head growth.


Q:

Any tinnitus?

A:

Not me, but unfortunately my brother suffers from it from time to time. He will sometimes wake up with crippling tinnitus, and can only wait for it to pass.