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IamA profoundly deaf male who wears cochlear implants to hear! AMA!
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
_beerye2151 karma
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.
_beerye159 karma
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.
_beerye1647 karma
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).
fedex_me_your_tits44 karma
OP pls. You mentioned noise cancellation. Does this effect music nearby?
_beerye156 karma
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.
cynikalAhole99796 karma
HELLO - IS YOUR HEARING LOSS GENETIC OR ONLY FIXED WITH IMPLANTS VS SURGERY? ;) CAN YOUR IMPLANT INTERFACE WITH YOUR PHONE?
_beerye896 karma
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.
_beerye1025 karma
I can take them off at any time. I have a magnet in my head which is how the implant stays on my head.
_beerye768 karma
There's a possibility that the standard metal detectors could mess with the map on the devices (the programmed levels of sound), so I usually go around them and get a pat-down. The ones where you stand up with your arms out and the detector swirls around you are fine for me though.
_beerye659 karma
I've never gotten an MRI, but in order to I would have to get surgery to take the magnets out of my head. That may be something I have to do in the near future because my knee is a little busted, and I will probably have to get an MRI
xNepenthe612 karma
Thank you so much for this AMA.
The son of a friend of mine is about to get his cochlear implants soon.
Any tip or recommendation to know? Something that you wished someone told you before?
_beerye747 karma
Didn't see this until now, sorry! I (and my dad) wish I got implanted bilaterally right away, instead of waiting on my left ear. My dad was waiting because stem cell technology was supposed to not be very far away, but that kept being the case. I finally got implanted on the left at 6, and as a result my right ear is better than my left. Also, always wear them both! I got in the habit of not wearing my left one a lot which significantly slowed development. Always always always wear them both if you're going to wear them.
ShayGoes2Work549 karma
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.
_beerye374 karma
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.
KameronIsSenpai416 karma
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!
_beerye662 karma
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.
Thewondersoverboard253 karma
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
_beerye366 karma
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.
t30ne206 karma
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?
_beerye358 karma
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!
jimmycorpse167 karma
I have a question for you about lip reading. My son, who's now 5 years old, has a Cochlear implant in one ear and a hearing aid in the other. He's been deaf/hard of hearing since he was very young. I'd always suspected be could read lips, but he never really understood the the question when I asked him.
Anyway, we were watching a soccer game one day on mute with the subtitles on and he repeated what was being said during the manager's interview. He can read, but not that fast. I asked him how he knew what the manager said by how his mouth was moving. He said "Yes, I have a kind of hearing that other people don't have."
It's stuck with me because the way he phrased it made lip reading seem so fundamental, almost like when he read lips he was actually heard sounds.
I suppose my question is this, what is reading lips like for you? Is it this fundamental for you? Would you call it a different kind of "hearing"?
_beerye169 karma
I used to read lips alllll the time to aid me with listening to people talk. As I got better at hearing though, I shifted towards making eye contact as I spoke with people. Now I feel politer making conversation, and also I've developed a sort of peripheral lip reading, which is cool.
Brian_K9184 karma
I was wondering, how is the audio quality of modern implants? Have they improved over the past years?
_beerye384 karma
Yes, improvements are made in quality and programs to improve hearing capability. I have a program that blocks out constant/white noise and it makes it easier to hear conversations and sounds that I want to hear, not the drone of the A/C. There are programs that block out all crowd noise when having a conversation with someone face to face, as well as others.
MrChinchilla169 karma
Do you ever get interference on your implants? I would be worried of stray signals, or someone else trying to connect to them.
backsosoon138 karma
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?
_beerye271 karma
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.
funshyne328102 karma
I clicked on your pic expecting to see something totally different, and was pleasantly surprised to see an adorable face staring back :) you're super cute!
My question: are you single?
Haha but in all seriousness, does it help when teachers wear microphones?
_beerye102 karma
Haha thank you! And yes, as a pringle.
And it used to, but now I just prefer to not deal with the microphone and listen to them normally.
Raiz31497 karma
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.
MisterLaFitte90 karma
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.
_beerye121 karma
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.
_beerye280 karma
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.
debaserr119 karma
You turn them off when you fall asleep?
Isn't that taking a leap of faith every night?
_beerye287 karma
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.
WinosaurusTex30 karma
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!
_beerye41 karma
That would be pretty cool, I love dogs. It would be a good way for me to not burn down in my own house.
QuiteSomeBiscuit23 karma
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?
_beerye72 karma
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
flyingsaucerinvasion57 karma
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?
DongleNocker84 karma
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?
MrGalaxy9376 karma
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?
_beerye176 karma
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.
tiggyspawn71 karma
How can you set an alarm to wake up early? I assume you don't want to sleep with the device attached to you!
_beerye179 karma
I use an alarm clock that has a vibrating device attached to it that's strong enough to vibrate my entire mattress.
Muthafuckaaaaa67 karma
Can you hear me now?
But seriously, what is your favorite sandwich?
_beerye148 karma
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, jalapeΓ±os, chipotle southwest, honey mustard, subway vinaigrette, and salt and pepper.
p.s. not sponsored by subway i promise
vflashm53 karma
What do you plan to do with obsolete unmodified humans when cyborgs take over the world?
_beerye108 karma
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!
ROCK3734 karma
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.
_beerye55 karma
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.
tagriel49 karma
Hey! What is your opinion on the movement to reject cochlear implants in deaf children in order to preserve deaf community culture?
_beerye135 karma
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.
SGjackelele47 karma
Hey! Thanks for the AMA! I am currently deaf in one ear and i have a cochlear implant. (I have decent hearing in my left Ear) I've been wearing my cochlear implant for around 2 years and still don't hear anything in it. I'm deaf because I have nf2 and the tumours have grown recently and it looks like I'll be getting a different kind of implant (brain stem or something) sometime next year. My question is if you've ever tried other alternatives and were they?
_beerye42 karma
I haven't tried any alternatives since the cochlear implants have worked for me. I am deaf for a different reason though (we're not entirely sure why, but we think it's because I don't have the little microscopic hairs in the cochlea that vibrate when sound passes over them). I hope that the new implant works for you!
ilikethatcrust41 karma
What was your reaction when you where able to hear for the first time?
_beerye129 karma
Because I was so young, I don't remember. My brother was older when he was implanted, and he said that sound had "color."
_beerye119 karma
My parents are the main reason I have the opportunities I have today. I'm lucky my dad have a job to support the costs of cochlear implants (they're really high) and a mom who was willing to put her life and career on hold to care for us. I have no doubt that they think that the cochlear implants were the best decision they could have made for us, and I agree.
Kiyoko50435 karma
Does it feel peaceful when and know you can just block out the worlds sounds if you want peace and quiet?
neumanne117130 karma
Tell me more about the Bluetooth functionality? Why? What settings do you need to change? Besides "seeming" cooler, what is better with it vs. without?
Also, I have nerve deafness meaning I hear normal except for a specific mid-range, which I'm totally deaf too. It's super annoying but I'm mostly able to fake it. Now that I'm getting older though, it's getting much harder to fake. Do you have any insight into other new hear-aid technologies?
_beerye73 karma
The bluetooth functionality is great because I can basically play music from my phone to my brain. It's impossible to get perfect noise canceling from headphones, (it's also annoying to wear them after aw while) but with the bluetooth I can choose the ratio of what I can hear and what I can't. So if I want to only hear music or netflix (or whatever), I can make the ratio 100% bluetooth and no outside noise. If I want to be able to hear surrounding sounds, I can change the ratio to 90/10, 80/20, etc. It's just nice to hear pure sound! That sound's frustrating! I'm not very knowledgeable about hearing-aids, as they are quite different from cochlear implants. I would definitely research them though, because I would be surprised if there wasn't anything available to help you with that.
G2pol_ma28 karma
Do you get annoyed when people ask you "Are you Deaf" even though they can see that you wear cochlear implants?
_beerye85 karma
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.
_beerye74 karma
Fantastic! Hard, but that's because I'm majoring in software engineering and some of these classes are difficult!
djpersing1526 karma
I'm profoundly deaf. I couldn't read lips and cochlear implants wouldn't work on me due to my brain not allowing me to hear. However, my son was born in 2015. He's hard of hearing. He can hear in left ear but couldn't hear in the right ear. My whole life, I always believe in ASL strongly and I was against cochlear implant strongly, but when it comes to my son, suddenly, my attitude changed. I have been debating with myself for the option of putting the cochlear implant in my son's right ear. His mom is a cochlear implant user, but haven't used it for ten years and refuse to put it in our son. Would it makes his life easier if I get him cochlear implant, on serious inquiry? If I am going forward with it, I'd probably have to battle for it in the court.
_beerye30 karma
I just want to say this. Having a cochlear implant has significantly changed my life. There are hundreds if not thousands of opportunities that I have been given because of them. I can't imagine living without them. I'm indebted to my parents for implanting me.
_beerye33 karma
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.
Ohthehumanityofit21 karma
Are there different grades of deafness? Where does 'profoundly' lie on this scale?
_beerye40 karma
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.
HarryBahlsack17 karma
πβπππππππββπββπππππππβπππβββππ?
Brailledit12 karma
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.
_beerye15 karma
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.
_beerye15 karma
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.
1life2blived9 karma
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?
_beerye18 karma
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.
xinxai_the_white_guy5 karma
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?
_beerye16 karma
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.
DarkContractor3 karma
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?
turkelberry3 karma
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?
RocKiNRanen3 karma
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?
_beerye5 karma
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.
BailoutBill2 karma
What is it that the implants actually interact with inside your ear? Do they have wires that actually go into the brain, or just somewhere deep in the ear itself? How long does the procedure take to add cochlear implants?
_beerye4 karma
They interact with the cochlea inside the ear. The electric impulses I explained in the original post stimulate the cochlea and send those signals to the brain. Not sure how long the surgery was for each implant, but it wasn't short.
_beerye5 karma
I used to watch yugioh when I was a kid but never really considered myself an anime fan. I watched Sword Art Online recently and thought it was pretty good. I still think some of it is a little cringy though.
p0inky2 karma
Are you ostracized by the deaf community for getting cochlear implants? Do you view deafness as a disability?
_beerye2 karma
There is debate about that, but I have been welcomed in my experiences regardless of my implants. Being deaf is definitely a disability, but it has shaped me and given me many positive traits that are elevating for me.
Chew_Beccas1 karma
So I read earlier that you said you could like just have Netflix or your music playing 100%. Could there be any damage from playing anything too loud?
_beerye2 karma
Not really, I can stand next to a massive speaker playing full blast and be fine, except my eardrums would probably blow. It wouldn't affect my hearing though
MaxofJupiter0 karma
My mother has CIs so this is a question I am interested in: What are some moments when you realize your actually deaf because you can hear so well with the CIs?
_beerye2 karma
You mean times I forget I'm deaf? (I think that's what you're asking). I don't really think it's something I can forget even throughout the day but I don't really think about it, I just know I can hear well.
Batspank2043 karma
Do you get shunned by others within the deaf community for choosing to have implants versus those who chose not to?
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