TL;DR
It sucks to be so isolated (and that’s probably why this post is so long in the first place)
Thanks for sharing your experiences. I didn't realize until now how much it meant to me to hear about others going through similar experiences.
I’m 22 and I just realized now that I haven't really communicated with another deaf person for about a decade since I graduated from elementary school where there was a small, tight-knit class for handicapped students. The lack of communication might ironically be a byproduct of doing too well in school. It started when I first transferred out of my handicapped class into the “regular” class in elementary school. Then I transferred to an academically prestigious school district while everyone else went to the middle school with the better disability program. And at the moment I’m a student at UC Berkeley, where I learned that there are probably only about 30-something deaf students out of a population of ~36,000 (and, surprise surprise, I never managed to come across them). I guess the point is, after that long of a time, I can't help but start believing that I’m the only deaf person everywhere (which, on second thought, is probably true most of the time).
So as I read through your post, I couldn’t help but feel a stabbing pain of recognition that, “hey, I totally had that same feeling before too...” Especially the group conversations, where I often smiled and laughed with everyone pretending that I heard the joke. Oh and there’s the frustrating lack of subtitles in video tutorials and screencasts too. Then again, it’s not new to me to learn based on reading alone, since it’s been the same with almost everything else: elementary school, middle school, high school, university. But still, it sure would have been nice to follow along with the speaker in the videos.
Admittedly, my hearing circumstances are rather different from yours since I grew up as a hard-of-hearing kid who could still hear and communicate orally as long as my hearing aids are in. However, two summers ago, I jarringly lost all usable hearing in my left ear without an explanation. And sadly, it just had to be the better ear that I used for everything hearing-related like phone calls and listening to music on earbuds...sort of like losing your right hand when you’re right-handed, so now you have to learn how to use your left hand. Afterward, I learned that I had a genetic condition where my hearing was fated since birth to progressively worsen and peak as I reach my 20s.
Since then, I really struggled with hearing in a new, scary way that I never experienced when I could at least hear with hearing aids in both ears. No matter how hard I tried to concentrate on the lipreading and body language, I could barely comprehend others and would miss just as often as I scored. Now I can’t help but laugh at how my younger self really overestimated her pro lipreading and bodyreading skills. Since I was groomed to live and succeed in the hearing culture, it doesn’t help that I can’t do sign language either. However, I just learned about the Cued Speech system for the first time from your post, so I’m rather excited about learning up on this system with my sister later today.
But for now, what ended up happening after losing my left ear’s hearing is that, for about an entire year, I didn’t talk. Back then, it was normal for me to go through an entire day speaking less than 5 words (“Hello roommate!”, “Bye roommate!”). My younger sister eventually managed to keep me human by calling me on the phone everyday to chat for hours. (Since I know the sound of her voice like the back of my hand, I can understand her 90% of the time...beats my 50% average by a long shot.) And when we eventually moved in together, she’s my handy second ear out in the wild. We’ve worked out a system where she watches my face closely when I’m interacting with the clerk or waitress so she can smoothly step in at the slightest quizzical or panicky expression and say stuff like “Yes, we’ll both have that drink, thank you.”
For now, I’m saving up for a cochlear implant, so I’m optimistic that I’ll manage in the end, especially with the help of my sister along the way. So to Alice when you wake up and read this in the morning (I’m writing this at 3:45AM), thank you. :]
I’m so sorry for this wall of texts, I originally had nothing to say and now I ended up with too much to say. I think reading your post really opened up a dam of all these memories, thoughts and feelings. Once again, thank you for sharing, and I hope you do well on your next venture!
Hi, sister here. It's 8 AM and she's (^) currently sleeping soundly near me, but I'd thought I'd contribute my own 2 cents on the whole matter.
I'm Alice, and I've grown up with a partially deaf sister whose hearing has gotten progressively worse in the recent years. I've watched her listen to me with ease years ago to leaning over and struggling to what I have to say now today. I'm currently studying music and aspiring to be a composer, and what does scare me is the thought that my sister won't be able to listen to my music when the time comes. She's the one who's supported my endeavor the most.
And now that I think about it, I never really "feel" that she has this hard of hearing situation. It's never been that way to me, I just accepted her since I was young and we've both been raised normally together like everyone else except for those awfully boring visits to The Hearing Doctors in which I frittered waiting around whining what's for lunch.
My sister has been fortunate enough to have the opportunities to grow into the person she is now. Of course, that doesn't undermine her struggles at all, but I understand that everyone has a different experience even within a group of relatable topics. I'm glad that my sister's never been socially isolated or bullied, like another close friend that I have.
I'll call him C here. He's an online friend (real as any other friend) and I cherish him a lot. He's 21, partially deaf, and has had cochlear implants. His life experiences differ a lot from my sister's. He's faced much adversities. C's been bullied when he was younger, has gone through depression, been socially isolated (at one point homeless) but is making considerable progress today in his game design education and I believe he'll succeed on his own someday. There was a time I didn't understand why he was so self conscious about his voice. The first time I heard him, I realized his speech was slurred - especially with the 's' and 'l' if I remember correctly. Once I got past a certain threshold, it was fairly easy to understand him and I didn't pay too much attention to some pronounciation difficulties.
Although we've been slowly drifting apart and now we're busy immersed in our lives, I won't forget the stories that he's told me or the things he's taught me. OP, thank you for posting your story. You sound like someone's who been through a lot.
And also -- don't give up on romance. I forgot to mention that there was a point in time that I liked C (romantically!), and he knew that very well. What can I say? I was attracted to his wisdom and motivation to keep on going, no matter how tough things got. :)
You're not alone. I've posted elsewhere, but would like to invite you (and anyone who's interested) to a meetup/beer/drink with us. If you're up for that, and in the Bay area, email me at bobby at brilliantecho.com!
Thanks for sharing your experiences. I didn't realize until now how much it meant to me to hear about others going through similar experiences.
I’m 22 and I just realized now that I haven't really communicated with another deaf person for about a decade since I graduated from elementary school where there was a small, tight-knit class for handicapped students. The lack of communication might ironically be a byproduct of doing too well in school. It started when I first transferred out of my handicapped class into the “regular” class in elementary school. Then I transferred to an academically prestigious school district while everyone else went to the middle school with the better disability program. And at the moment I’m a student at UC Berkeley, where I learned that there are probably only about 30-something deaf students out of a population of ~36,000 (and, surprise surprise, I never managed to come across them). I guess the point is, after that long of a time, I can't help but start believing that I’m the only deaf person everywhere (which, on second thought, is probably true most of the time).
So as I read through your post, I couldn’t help but feel a stabbing pain of recognition that, “hey, I totally had that same feeling before too...” Especially the group conversations, where I often smiled and laughed with everyone pretending that I heard the joke. Oh and there’s the frustrating lack of subtitles in video tutorials and screencasts too. Then again, it’s not new to me to learn based on reading alone, since it’s been the same with almost everything else: elementary school, middle school, high school, university. But still, it sure would have been nice to follow along with the speaker in the videos.
Admittedly, my hearing circumstances are rather different from yours since I grew up as a hard-of-hearing kid who could still hear and communicate orally as long as my hearing aids are in. However, two summers ago, I jarringly lost all usable hearing in my left ear without an explanation. And sadly, it just had to be the better ear that I used for everything hearing-related like phone calls and listening to music on earbuds...sort of like losing your right hand when you’re right-handed, so now you have to learn how to use your left hand. Afterward, I learned that I had a genetic condition where my hearing was fated since birth to progressively worsen and peak as I reach my 20s.
Since then, I really struggled with hearing in a new, scary way that I never experienced when I could at least hear with hearing aids in both ears. No matter how hard I tried to concentrate on the lipreading and body language, I could barely comprehend others and would miss just as often as I scored. Now I can’t help but laugh at how my younger self really overestimated her pro lipreading and bodyreading skills. Since I was groomed to live and succeed in the hearing culture, it doesn’t help that I can’t do sign language either. However, I just learned about the Cued Speech system for the first time from your post, so I’m rather excited about learning up on this system with my sister later today.
But for now, what ended up happening after losing my left ear’s hearing is that, for about an entire year, I didn’t talk. Back then, it was normal for me to go through an entire day speaking less than 5 words (“Hello roommate!”, “Bye roommate!”). My younger sister eventually managed to keep me human by calling me on the phone everyday to chat for hours. (Since I know the sound of her voice like the back of my hand, I can understand her 90% of the time...beats my 50% average by a long shot.) And when we eventually moved in together, she’s my handy second ear out in the wild. We’ve worked out a system where she watches my face closely when I’m interacting with the clerk or waitress so she can smoothly step in at the slightest quizzical or panicky expression and say stuff like “Yes, we’ll both have that drink, thank you.”
For now, I’m saving up for a cochlear implant, so I’m optimistic that I’ll manage in the end, especially with the help of my sister along the way. So to Alice when you wake up and read this in the morning (I’m writing this at 3:45AM), thank you. :]
I’m so sorry for this wall of texts, I originally had nothing to say and now I ended up with too much to say. I think reading your post really opened up a dam of all these memories, thoughts and feelings. Once again, thank you for sharing, and I hope you do well on your next venture!