Hearing impaired since 4, deaf since 16, pianist since 3, AMA!
I started playing piano at age 3, diagnosed with bilateral sensorineural hearing loss at age 4, when I began to wear hearing aids.
At age 16, I quite literally woke up deaf, the ~25% of my remaining hearing having gone down to 3% while I slept.
I received a cochlear implant at age 17, I'm now 25, still playing piano. I can listen to music, dance, use a cell phone, tons of normal stuff.
Ask me anything!
Edit: okay, I need sleep! I'll reply to any further questions in the morning.
Oh yes, he was brilliant. I did a few of my piano exams with my hearing aids out, putting my bare feet on the pedal part of the grand piano in the examination room to help me with dynamics.
I've heard that he supposedly memorised the sound of every key on the piano before going deaf in order to write music, but now I'm actually wondering if what he memorized were intervals and harmonies.
I'm musical but not gifted. I can "hear" simple melodies and intervals in my head without hearing or humming out loud. I can almost hear but more "feel" simple harmonies. Is this how music felt to you when you were deaf?
Not exactly. I had hearing aids from 4-16, I could hear music then. In those six months when I had nothing, I would open the lid of our grand piano and play fortissimo just to get some sound. I still remembered what music sounded like though.
Now, with my cochlear implant, music sounds very clear to me. I can even hear when I get notes wrong when I'm practising, which was a struggle before.
I guess what I'm saying is, music has always been sound to me. At the same time though, I can't translate what I hear in my head to paper or keyboard, so writing music is a struggle. I love to make up melodies but can't write them down, and I can't transcribe songs I hear elsewhere and want to play.
Can you hum the melody from your head out loud? There are apps that will tell you what notes are being played. You could do that and write them down one by one and then play it.
Nope, I can't hum a pitch correctly! Sometimes I can figure out a melody by seeing if what I put on the paper matches my head, but it's a difficult process. I don't write music much.
That's amazing music is the soul. Would you rather be fully blind or fully deaf?
I have a few friends who are blind, we discuss that very thing all the time. Does your hypothetical situation include a cochlear implant? If yes, then deaf.
If not, I'd actually rather be totally blind. Being deaf is far more an invisible disability, whereas being blind you have the white cane or Guide Dog. My visually impaired friends are sometimes more independent than I am, it seems.
Does not include the implant, as a pianist I'm not one myself I'd play moonlight sonata all day everyday what a beautiful song take care my friend x
Ooh, as a pianist? Deaf. I've done enough ear training and sight reading that I can 'hear' what a piece should sound like just by reading the music. I've actually been told I'm a more emotional musician when I have my processor off.
How did your parents react when it happened?
When I came upstairs the morning it happened, it was a Wednesday and the previous day had been totally normal. We had no warning. I had one of those iHome speaker clocks that charged your iPod and could play music or a radio station to wake you up. I had it set to max volume, on a hard rock station. It used to wake the whole house.
I only woke up 5 minutes past the time it was supposed to go off, but it had been going off the whole time and my mom knew something was up. The typical grouchy morning teen, I was pissed about sleeping in and started to bang things around as I made breakfast. I remember muttering to myself, blaming the alarm, even though I had reached over and felt it vibrating from the sheer volume of the rock music.
Mom came into the kitchen, asked me what was wrong. I told her I had slept through my alarm, then promptly burst into tears. She didn't cry, just pulled me into her arms, she told me later she knew something like that would eventually happen.
We spent the day at the hearing clinic. Having been tested twice a year since age 3, I could practically run the tests myself, and I could interpret audiograms as well. Normally, mom would just stay in the waiting room, my audiologist and I would interpret the results together, and I would tell mom what had changed.
They called Mom into the 'mothers room', which was where they had toys for the kids while the parents discussed their child's hearing loss or aids. I don't remember much of this part but I know she cried then.
Two days later, mom attempted suicide and spent the next 6 months in the hospital. I don't know if they were connected or not. I try not to think about that.
I don't remember how my dad reacted, unfortunately. My parents were going through a falling out and he wasn't living with us at the time. He moved back in while mom was in the hospital.
God damn, that's really heavy. Stay strong dude, you've gotten a lot farther than I ever could have.
Hope your mom is doing alright now
She's alright, yeah. It worked out in the end, funnily enough. She was in the hospital for 6 months, got released right after my implant surgery. Once I got activated, I absolutely flourished. Mom used to say it was like watching a flower blooming, it gave her hope and joy again to see those moments of things I'd never heard before.
I have a few weird questions, so just answer what you're comfortable with and please correct me if I've said anything hurtful.
If you can remember, how does your original hearing differ from your hearing now?
What advice/requests do you have for the hearing community?
As a fellow woman, does your hair around your implant drive you bonkers?! I'm imagining so many tangles.
Thanks for the AMA!
I remember very little of my childhood before getting hearing aids, but I do know I was born with perfect hearing. The hearing aids of the 90's were crappy, like turning up the volume without helping me to focus on a voice and eliminate background noise like modern ones.
To the hearing community, especially to those who work with the public: if I ask you to speak facing me so I can pick up your voice and try to read your lips, please do that throughout our entire interaction. It makes me feel repetitive and annoying having to ask you to repeat everything three times. Also, my not being able to understand your accent is not an insult to your country. I spend 99.9% of time listening to my own regional accent, yours is therefore difficult and I might need you to speak slower or write things down.
Yes, my long hair drives me crazy sometimes! I was told when I got my implant that a lot of women wear it under their hair, but mine is so thick that it kept falling off! I wear my hair in a ponytail 90% of the time because of this.
Do you prefer to talk in person or to text/e-mail? Do you think your preference is based more on your personality, or on that it's easier for you to see the words rather than hear them?
Texting is a boon to the deaf, don't get me wrong, but at the same time I've worked so freaking hard to be able to talk on the phone normally that sometimes I'd rather do that.
It usually depends on how well I know someone's voice. My partner, my close friends and family, I can call up on the phone whenever. Needing to call a company for tech support or something? "I'm sorry, I'm hearing impaired, can you repeat that?" Thank goodness for chat support, Twitter and Facebook support, etc.
I actually don't like email too much. To me it's become synonymous with junk mail.
Thank you for doing this AMA. I have read elsewhere that the term “hearing impaired” is offensive. And you, as a deaf person, are using it in your title. Are those terms not offensive to you?
The one that I find offensive is 'hard of hearing'. Most of the time I just call myself deaf, since I legally am, but if I'm on the phone I prefer to say hearing impaired.
To me it just makes sense. My hearing is impaired, it's damaged. My friends who are blind prefer visually impaired more often than 'blind', which makes sense for the same reason.
And you're welcome! I've always wanted to do one, even though I'm very new to Reddit. My hearing is my favourite topic, so I'm having the time of my life right now.
Thanks for doing the singular AMA that will now cause my phone to blow up from notifications......
Not sure how my AMA will send you a bunch of notifications, but my apologies!
I made one comment a while back correcting someone on using hearing impaired towards Deaf (note Big D, /r/drama don't you FUCKING DARE) people and now /r/drama is on a brigade to see how many times a day they can
- Find a tangentially related topic to post about me in /r/drama
- Constantly mention me in any comments referencing the word deaf regardless of context. Same with the term hearing impaired. Bots? Maybe, but fanatic sense of circle jerk? Definitely.
Tl;dr a circle jerk sub loves to have a circle jerk over me and a singular comment I made about finding the term hearing impaired offensive and correcting them to not call me such.
Ahh, so your correction was regarding D/deaf as opposed to hearing impaired? I do know the difference between Deaf and deaf, and I choose not to use the D deliberately because I was raised speaking, never taught sign language, and have never been active in the Deaf community. The poster was commenting on my use of hearing impaired in my title, though in that case I used it in reference to before I went completely deaf at age 16.
1) Far as I know, the N6 allows for 4 programs (real-world, conversation, a beam setting, and a music program, right?). Typically the "4th program" is often a "music program" that accentuates the softer sounds of music. Do you use a music program when you play? If not, what program do you typically use?
2) What led to your decision to go bi-modal? (Most people I know with CI's have done bilateral CI's, instead of just one).
3) Have you ever fallen asleep with the CI on while listening to something peaceful? Reason I ask, most of the time, CI users take off their implants at bedtime so this experience of falling asleep to an audiobook or music playing is probably unlikely to happen?
4) What are some of the most interesting sounds you've heard since you've gotten the CI?
5) What's your setup when you answer phone calls? Do you just put the phone to your CI, or do you use Bluetooth, or something like the Mini Microphone?
6) Concerts, an opera, or an orchestra? What would you attend and why?
Great that you're learning ASL. I think it's a good idea to have multiple options for communication.
Lots of awesome questions!
1, up to 4 programs on the N6, yes. I actually only have 2. The SCAN programs that adjusts to my environment, and music. I don't carry my remote with me, I just press the button on my processor once to change it.
2, I was implanted in 2009, when we thought that was it for my hearing. But in 2013, I was at my annual checkup for my implant and the technician suggested I look into getting a hearing aid again because I was responding to things even with my processor off.
It's not as good as I would like. The hearing aid is basically only there to give me surround sound, the implant does 80% of the work.
3, no. I'm not supposed to wear it at night, and I adhere to that religiously. Most nights I have a bit of trouble getting to sleep because of my tinnitus, but it all works out in the end.
4, ooh. A trickling stream. A cat purring. Songbirds. Rain.
5, my cell phone I just put up to my processor, volume turned to max. I used to use Bluetooth with the Roger Pen, but that was a hassle because I use it so much when I go out. Landlines I manually turn to max as I put it up to my processor. I need it so loud that other people can hear the sound a few feet away. I've blown speakers before.
6, an orchestra, because classical music is easiest to process. It's definitely on my bucket list to go to a proper concert, with a rock band, but I don't know if that will ever happen.
I'm loving learning ASL! So expressive!
What is the most personally meaningful or fulfilling situation/moment you've had in your life that came from playing the piano?
The last concert I performed in. It was a benefit concert for a school for the blind, and they had visually impaired performers as well. My best friend, who is visually impaired, sang to accompany me.
Even though I was the one deaf pianist in the lineup and there were three blind pianists, I've never felt so proud of how far we all went to be able to perform. How we pushed past the sensory barriers life tried to give us, and threw ourselves into music.
I've never felt so confident, so emotional, when playing for a crowd. I almost started to cry, I was so moved by the music /I/ was sharing.
That, and the moment at the beginning of my set where I had trouble adjusting the music stand because the other pianists hadn't needed it. Actually managed to make a joke that needing music was a disadvantage of being sighted!
The use of cochlear implants is sometimes a divisive subject. Have you received any flak for having one?
Yes, but such incidents are few and far between. I'm not active in the Deaf community, so the controversy doesn't come up too much in my social life. I understand why Deaf people might not want to feel 'forced' into the hearing world, but I was raised speaking, with hearing aids. It's all I knew.
Did you learn ASL or did you get an implant right away? Any plans to learn just in case?
I was fast-tracked to get an implant due to severe tinnitus. Normal wait-list at the time was 2-5 years, from my assessment to surgery date was 3 months. I'm just now learning ASL with my (hearing) partner, but I'm nowhere near fluent yet.
How does a cochlear implant help with tinnitus?
In my case, the input from the implant gives my brain something to focus on as a distraction, so it forgets to create the tinnitus as loudly. It's always there if I look for it, but it's not as bad. The surgery itself shocked my brain into lessening the volume of it as well.
My brother tunes pianos as a side gig, mainly by ear but also with the aid of a digital tone device. Do you tune your own piano and if so, how?
The grand piano I grew up with was always tuned professionally, and the one I have now is electric, so no. I don't think that is something I would be able to do. When I took ukulele in middle school, I was never able to tune my own uke properly, it would always be off no matter how closely I listened.
What was your transition to cochlear implants like? When you had them activated, did you experience sound in the same way as you did before you lost your remaining 25% hearing?
Not at first. Think of it this way, your ears are used to working the way they're set up to work, with pure sound. When I first got turned on, and I remember this very clearly, my brain didn't know what to do with the new type of electrical signal it was receiving.
I remember feeling a buzzing sound every time the mic picked something up. It wasn't a sound, it was a feeling, a bit like a mosquito in the room you've lost sight of. I was 17 at the time, but I noticed very quickly that the buzzing sound was firing in response to things I'd never known made sounds.
I ran, stomped, skipped, tiptoed down that hospital hallway like a 4 year old on a truckload of sugar. I'd never realised FOOTSTEPS made a sound.
I made my mom cry with emotion during dinner that week because my look of exasperation at my dad just quietly chewing next to me was something I've never noticed before.
The smallest things fascinated me. Breathing, tapping your nails, wind, water, waves, a clock ticking, and I'm still discovering new sounds to this day. Not five minutes ago I opened a can of soda and noticed that I could hear the gas bring released for a few seconds after the initial hiss of it opening.
I adapted to my implant extremely fast by becoming practically addicted to audio books, which I could follow along with as the same voice spoke for hours.
Things are now far clearer than sound ever was before with my hearing aids.
Is the voice in your head that of your 16 year old self?
No, my voice in my head sounds like my voice as I hear it.
If there was a piece of technology or a service that would make the lives of the hearing impaired easier. What would it be?
First thing that popped into my head is captioning for real life. My lip-reading skills have slipped quite a bit since I got my implant, so I relied on a speech-to-text app for the deaf when I had to keep my implant off for a few days due to an infection last year.
It sucked. Voice recognition technology is improving all the time, but those advances don't seem to be put to adequate use for the deaf and hearing impaired community.
Hello and thank you for the AMA! I’m 41(m) been wearing hearing aids since I was 8yo. I have a few questions. When you got your implants did the first one work for you? I’ve heard stories about having to switch because the one implant didn’t work for that person. Did you ever learn to sign? My wife is pressuring me to learn in case I go completely deaf.
I'm actually on my 3rd processor, because my activation was one month before the Nucleus 5 came out. The clinic lent me a Nucleus Freedom for that month, then the 5 was mine to keep. Got upgraded through my disability coverage in 2014 to the Nucleus 6. Got really lucky with that and didn't have to pay a dime, normally an upgrade is $7500 out of pocket, even in Canada. (I have another implanted friend who had to pay it)
A friend of mine has one and he says that when he listens to music, it sounds really tinny. Does music sound weird to you because of your cochlear implant?
How long has your friend been implanted? Mine is 8 years old and music sounds fine.
Can you use Bluetooth with your cochlear implants?
Only through my Roger Pen, not through the implant itself.
What is that? (On mobile - sorry)
https://www.phonakpro.com/ca/en/products/wireless-accessories/roger-pen/overview-roger-pen.html no problem! I have a silver one.
How can you tell if your piano is tuned ?
I can't. The one I have now is electric though, it's not supposed to go out of tune.
My son has cochlear implants. He has recently turned 8 years old. He also has cerebral palsy. He was born with his hearing impairment....sorry if you've already answered this question, but were you born with hearing loss or could you hear and then suffered the loss at age 4?
Born with perfect hearing, started to lose it at age 3, got hearing aids at age 4. Wore hearing aids until age 16, got one CI at 17, started wearing hearing aid again at 20.
You said you would play very emotionally. If you improvise, do you rather play in minor or major scales, or do you implement church modes in your playing? Do you intend do also play synthesizers, and play in a band, or rather stay classical? Thank you for your answers :)
I prefer to play in major scales, though I very rarely improvise. Modes have never made sense to me. I struggle to accompany another instrument, because hearing the two streams of music and still needing to pay attention to what I'm playing is very difficult and overwhelming for me.
I was wondering, do you still have the three dimensional perception of sound through you implants?
Not really. I'm bimodal, so I also have a hearing aid, but my perception of where sounds are coming from is not very good.
Hi! Thank you for doing this AMA!
My family has a hereditary hearing loss. My mom began losing her hearing in her 30s, and has been wearing hearing aids. She just found out that she’s eligible to get a cochlear implant on the left side, and will continue to have a hearing aid on the right side (bimodal, I think the term is?).
One of her concerns is that it might not be “worth it”, as it’s irreversible if a new technology comes along. She is currently not able to talk on the phone, listen to music, hear much if people aren’t facing her/talking loudly, etc. I guess my question is, is the cochlear implant worth it? The literature she got sounds like she’ll be able to make her own phone calls again, listen to music - it even said that hearing people talk after so long will seem “annoying”.
Yes, it is definitely worth it! Yes, the term is bimodal. I suggest you research hybrid cochlear implants, http://www.cochlear.com/wps/wcm/connect/mobile_us/home/our-products/hybrid-hearing/how-it-works as it might be a better fit for your mom depending on how much hearing she has and how well a hearing aid works for her now.
I can use a cell phone normally, hear people across the room, listen to music, lots of things that weren't possible or weren't as clear before. I highly recommend it if she's been declared eligible.
I think she’s in the process now of finding out if her insurance will cover it, I will definitely pass on your comments! Thank you for answering my questions so promptly! She texts and emails mostly, but gets frustrated that she has to have me or my dad make phone calls for her, that watching a movie or video needs to be subtitled (not always possible), etc.
Look into VCO TTY technology as well. If she can speak, she could make phone calls with a relay service typing what the other side says. iOS 10 for iPhones actually has TTY functions without needing an external TTY keyboard.
How do you keep your skin so smooth?
I never wear makeup, for one thing, and I use face products (cleanser and moisturizer) for sensitive skin. Thank you, I'm flattered you asked!
from what i understand a cochlear implant is basically a fancy conduction headset
so im wondering if you can interface different audio sources with the thing instead of the build in mic?
It's not bone conduction.
There is an array of electrodes in my cochlea, the signals from which simulate my auditory nerve directly.
As to different audio sources, I'm not sure what you mean. I can connect to my Roger Pen to stream from other media sources like my phone, but I couldn't connect to, say, an audio mixer.
I have a question which perplexes many people, and I think it applies to someone with as much ingenuity such as yourself. What is your record on solving the 1x1 Rubik's Cube?
1x1 is a square, not a cube, lol! How does one solve a Rubik's Square? How does one scramble it in the first place so it can be solved? Show me how you do that and I'll solve it for you.
How do you feel about parents of def children that won't give them implants ?
Lots of hearing parents of deaf children are agreeing to implants so the child can grow up 'normally'. I know a lot of Deaf people don't like or want implants because it would change everything they know about communication, but I don't know too much about hearing parents declining them for their children.
So, if i made fun of you in a whisper, you wouldn't be able to hear it right?
Probably not. My lip-reading skills have slipped considerably since receiving my implant. Whispers are just so much hot air.
Is your appreciation for Beethoven stronger now?
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