Last Updated on June 25, 2024 by sensation-experience
Well, folks, it’s about time I post here again, and I’d like to take y’all on another trip down my Memory Lane!
When I was five years old, I distinctly remember hearing the ticking of our wall clock, and one time I was even startled by hearing the blast of a train horn with a C4, E-flat4, and G4 chord that sounded very discordant when I was playing near the fence that separated our headstart school’s playground from the railroad tracks. Likewise, I was scared to hear sudden pops and explosions, like when balloons popped. I’m still afraid of blowing up balloons because of that. I was afraid of hearing certain sounds, like this keyboard that my occupational therapist had me practice Twinkle, Twinkle in E-major. It started playing this rapid and dissonant tone of Eb4 and E4 repeatedly, and I quickly tried putting my right shoulder on my ear, but the teacher thought I wanted to sleep. Since I was in kindergarten, all my classes were in Spanish, and hence, the teacher spoke Spanish to me with an English accent. I never told her that I was scared of that keyboard, though.
Then I noticed that I could twitch some temper muscles in my ear, which I later learnt that if I put a microphone up against it, I could potentially record the clicking sounds my ears made every time I moved the inner part in an upwards or outwards manner. For a brief time I was scared of it, and I imagined a rod inside my ear magically following me everywhere I went, and that there was no way of running away from it. I also had some brief instances of pulsatile tinnitus up until age eleven. I’d sometimes hear this form of tinnitus be significantly amplified during an out-of-body experience or astral projection. I also had regular tinnitus, such as a buzzing or humming sound in the lower frequencies, first in my right ear, then the left. Then they shifted to higher frequencies over time. Now, it’s mostly settled in my right ear, with a tone of 225 Hz and 3,100 Hz.
Sometimes I awoke to find that sounds resonated oddly, causing my tinnitus to ring more intensely. For example, if the hair cells responsible for listening to a B-flat5 on the piano was damaged, I’d hear a form of sympathetic resonance, which was common with ear infections. I later learnt that this was called diplacusis, in which sounds can vary in pitch in one ear.
At first, I was really excited and nervous about getting my new hearing aid in my left ear, since I learned that I kept going to the audiologist’s office every few months, but of course, I was just a kid, so nobody really told me what my prognosis was. I even went to an ENT, who used tuning forks to perform the Rinne and Weber tests to determine whether my hearing loss was bone conductive or sensorineural. I remember the 256-Hz tone being placed behind my ear had made me wince in discomfort, for it felt as though my head were about to explode! The other, 512 Hz, wasn’t as bad. Other tests included a device that looked like an otoscope done by my primary care provider, in which I had to raise my hand if I heard the 1,000-Hz tone. My school also had an audiometer with big and bulky headphones to periodically screen children for possible signs of hearing loss. My audiologist even conducted an ear reflex test using a weird probe with an arch that went over my ear! One of them sounded like a rapid tuh-tuh-tuh sound, which I think was to test for otoacoustic emissions, and another one made a weird humming/buzzing sound, similar to the tympanometer they always used. Sometimes they were accompanied by high or low tones as it created positive and negative pressure.
Anyhow, as I talked about in an earlier blog post, I learnt that there were negative associations with having hearing loss that I’ve been severely traumatised by, and people often defending their position by saying that I shouldn’t take their tones personally and stuff. It made me feel self-conscious, and I frequently got in trouble for it. Still, I hated being the only blind person in our group to have to rely on additional equipment and to always need assistance crossing lighted intersections. I even worked with a speech language pathologist for a while to work on understanding tone and inflection, sarcasm, humour, and figurative language. However, this only went for so long before I became obsessed with learning every single idiom in the English language, which is why I always write every new vocabulary word or phrase into my diary.
I used to have these weird sensations of fullness in my ear whenever I went higher in elevation, as if somebody had placed invisible fingers inside my ears, thereby causing my voice to resonate inside my head. I used to be extremely extroverted before I started losing my hearing, but then I started developing tendencies to mispronounce words because I couldn’t hear myself to make any corrections. However, I read an article a while back about a girl who loved turning up the music really loud on her iPod, but she wore earbuds with really tight baffles that completely isolated her from the outside world, and when she started singing along to the music, people had to get her attention by waving at her/tapping her shoulder, and she finally took off her earbuds. Well, guess what they told her? They said she was not making any sense because she wasn’t able to hear her own voice to ensure that she was pronouncing things correctly! So yes, even hearing people can mispronounce things, but it’s only when they can’t hear themselves that they often go unnoticed.
I remembered falling in love with narrated audiobooks on cassette and CD, and I enjoyed listening to the radio and TV with audio descriptions. I also learnt how to yawn really quickly and swallow, especially after I got over some colds and flu viruses, so as to restore my hearing. I also had a tympanostomy tube placed in December 2003, which was to help drain excess fluid out of my left ear. It fell out in about eighteen months. Sometimes I’d hear sounds dim for about a few seconds as a loud ringing sound intruded for another few seconds as it gradually faded out.
At the beginning of seventh grade, I was introduced to reading books synthetically thanks to a Book Port, which was originally made by Springer Design. I had already started learning how to use a Windows computer a few years before, using a screen reader called Job Access with Speech, or JAWS. At the time, though, I could only read books from the public domain, which was how I had fallen in love with the Oz books. I eventually read a few others, such as Anne of Green Gables. I balanced my time between listening to narrated audiobooks and books read by speech synthesisers, though I didn’t realise that I had already been reading news articles with NFB Newsline using a synthetic voice all this time!
Later that year, my hearing consultant, who helped me clean out my hearing aids every week, brought up something that I thought I remembered hearing once. A few years before, I had a substitute aid, and she told me that her son had something with a weird name, which sounded like COKE-lee-uh. I asked her what it was, and she made some weird shooing sounds, as if she were imitating ray guns on an alien film or something. She chuckled at her vain attempt to impersonate the sounds of it, though, so when my hearing specialist brought it up, I told them about that memory. They clarified that it was a cochlear implant that she was referring to, and the reason she made those noises was because of how distorted their sounds tended to be. We researched articles extensively and listened to various recordings of cochlear implant simulations. I learnt everything about how the surgery was performed, and how the electrodes stimulated the cochlea to transmit the signals to the brain. I have linked a list of sounds here for your reference.
I decided, from that point on, that I would never get cochlear implants, because I realised, as an old soul and an empath who loves listening to genuine speech, music, and emotions, I would lose a lot of that if I were to get these! And yes, if I was overwhelmed, I could simply detach the magnetic components and turn them off, and I would hear absolutely nothing, as I later discovered in The Sound of Metal. On the same note, I was intrigued by learning about biotechnology, bioengineering, synthetic biology, and regenerative medicine, and I vowed never to get any kind of artificial implant or other foreign object in my body if I could help it, even if it meant having to wait a lifetime!
I realised that we, as humans, are not able to regenerate certain things, such as reptiles and birds, and that has fascinated human scientists for many decades! I briefly thought of going to college to learn about neuroscience and synaesthesia upon graduating high school, but after a very traumatic experience, I ended up having to change my goals to focus on hospital volunteering/candy striping. As a huge fan of Lurlene McDaniel and Deborah Kent, the latter being a blind author with the National Federation of the Blind, I got to live vicariously through each of the characters they’ve been able to create, and that has allowed me to connect with other people in real life going through similar struggles and calmly work through their emotions! That’s why I feel like if we moved more and more towards using artificial and implantable devices, we would become devoid of all emotions, and I believe it’s very important to be individualistic and share a common collective, because it allows us to have an open mind and learn more about the world around us. That’s why many smart and intelligent people are primarily moderate/centrist.
And so, I’ve come to a realization: if I have to read books, so that I can learn new vocabulary terms and figures of speech, I’d have to either use a Braille display or speech synthesizer and get books in electronic text off of Bookshare, but miss out on the emotional tones employed by audiobook narrators. On the other hand, I could listen to the emotions, but I’d miss out on hearing subtle cues, such as the /s/ sound or if they tend to run their words together. Then I learnt that even hearing people can benefit from written lyrics and subtitles in large concert venues, because reverberation can cause these nuances in consonants to become lost in the vast open space! And, as someone with severe bilateral hearing loss, this is much more challenging that it requires me to have assistive listening devices!
My audiologist even showed me a new feature on some advanced hearing aids, called audibility extender, which transposes really high frequency sounds into a lower frequency range that you can hear. But, as someone with perfect pitch, this kind of threw me off a bit, but if it was the only way that I could enjoy hearing birds sing, no matter how alien they sounded, then so be it. At least, I was able to hear my own feedback so I could easily correct any tendency to lisp or mispronounce words. This was because the hearing aids made the /s/ sounds sound like /SH/.
And finally, I discovered something else about my ears: there were a few instances in which people told me that they heard squealing or ringing coming out of my hearing devices, and naturally, they were too high-pitched for me to be able to hear them! Or could I? There were times when I felt dizzy and nauseous after being exposed to inaudible feedback for a few minutes, and then I’d wonder why things sounded tinny and muffled all over! I even told my audiologist about it one time, because they once played a really, really high frequency tone, and while I could not hear it, every time it went off, I felt the chair beneath me sink in rhythm to the pulse of that tone. So, I knew that it was causing turbulence in my vestibular system!
So, a question to think about: if you’ve previously had perfect hearing but then lost most of it later in life, would you rather
- Not hear any speech and music at all, including emotion, as in the case of Helen Keller, or
- Constantly hear sounds you once cherish sound distorted and robotic and lack most emotional tones?
Most people are desperate when they lose their hearing that they’d jump at anything to get their hearing back, not knowing better what they’re getting themselves into. Their brain has to relearn to hear the sounds they once knew and adapt, if they choose to go that route. Then of course, there are young children who grow up having implants, as in the case of Raising Rylann, so their brain would automatically integrate the learning process into their overall development. I do wonder when they would soon realise that not everybody hears that way, and if they would ever wonder what real sounds sound like.
I am thankful that so far my hearing has stabillised, since mine was caused by a genetic condition that could possibly be reversed with gene therapy and nanotechnology. I also wondered if it might be possible to put cochlear implant simulators on hearing devices, so that essentially you have a built-in vocoder that you can switch on and off, just so you get an idea of how they might sound in different situations.
But, I’ve also gotta tell you a little story that happened to me when I was thirteen years old, and I was taking a shower. It was a Sunday in late January, and I remember water splashing into my right ear. In those instances, I just cupped my hand over my ear and created suction to get the water out. Well, that was not the case this time, for something caused it to make a hump sound every time I lightly hit the side of my head, or whenever I jumped up and down! I heard this low humming sound, as if somebody were plucking a guitar string, or more like a bass string, for it was around 52 Hz, or an approximation of A-flat1. It was just slightly higher than the mains hum you hear in European countries. It also sounded pretty hollow, as if I were inside a small hallway or something. I wonder if that’s why most of these cochlear implant simulation recordings often sounded a bit echoey.
But alas, I was bitterly disappointed to learn that one of my beloved procedures, the Progenitor Cell Activation procedure by Frequency Therapeutics, had failed horribly, thereby leaving us back at the drawing board! Still, I am a little miffed that the gene therapy for Otoferlin or things like that would only work best in children, but not in adults. Why can’t they just correct the protein found in NDP to create Norrin, and use that to aid in recreating healthy hair cells, and maybe functioning retinal cells? I’ll leave you to judge.