Fears Of A Deafblind Musician - Part 3

Hi everyone! I hope you've all had a great week and looking forward to the weekend as I am! Shall we continue with Part 3 of my fears?

Obviously if I do lose my remaining hearing and vision, whether together or separate, I guess my days of creating music could possibly be over. A lot of DAWs (Digital Audio Workstations - complicated words to describe a music making/producing program) such as Ableton Live — my personal favourite — are currently not very screen reader friendly (this is going by what I’ve read, not personal experience). They are also very graphical, although I’ve heard that Apple’s Logic Pro X is a lot more screenreader friendly, especially with their own VoiceOver screenreader. Still, this wouldn’t matter if I lost both senses together rapidly. As for listening to music, I fear that I’d end up falling into a well of depression - I just wouldn’t be able to enjoy music as much as I do now. Are there ways around this??

I know that Deaf people can still enjoy music by feeling the rhythmic vibrations, and I’m very happy for them. However, that way of enjoying music means having the volume cranked to the max and would probably annoy housemates and neighbours alike. There are 2 movies that I watched last year, Amazon’s movie Sound Of Metal and Apple TV+’s award-winning movie CODA! 

The first one, Sound Of Metal scared me. I won’t go into the movie here in case anyone watches it, but Ruben a drummer loses his hearing and wants to hear. He goes to a place that helps with coping with Deafness, hears about Cochlear Implants, eventually goes through surgery to get the implant. When he gets it, he doesn’t like what he hears, and everything is just too loud and he ends up not using the implant in the end. I think I can relate a lot to this movie as it’s dealing with my fears of hearing loss later in life. 

 

Below, is a trailer for Sound of Metal. If the embedded video doesn't work, you can check it out HERE.

About 10 years ago, I had an Ear, Nose and Throat (ENT) specialist appointment at Mater Hospital. At that time, I was suffering with constant high-pitched Tinnitus in my right ear which had become unbearable. I also saw the Occupational Therapist at the Mater to help deal with it. The ENT specialist suggested that I’d probably be a candidate for a Cochlear Implant. Check this page if you want to know more about Cochlear Implants. He said that he had a lot of positive feedback that Tinnitus became less of a problem for people who had the implants. It sounded really promising and I was starting to get excited at the prospect of ridding myself of a high pitched Tinnitus sound in that ear.

My big question was would I still be able to enjoy music? He pretty much said that I could still listen to music through my left ear because that ear wouldn’t get the implant. In other words, music I enjoy through headphones would be mono. My Apple devices have an option that allows music to be listened to in mono, but I noticed that rather than playing the stereo channels, it favoured one channel over the other. 

For example, with Joe South’s “Walk A Mile In My Shoes”, I was frustrated that I couldn’t hear the vocals of the verses, only the chorus. When I play the song through my big Apple HomePod, it was the same effect, proving that the HomePod is a mono, not stereo speaker unless you pair two together. You can only hear the voice very faintly, so I gave up on Mono mode on iOS. Since that appointment, Mum and I have done research on Cochlear Implants and I haven’t been happy with what we found.

Because Cochlear Implants are designed to bypass the hairs in the auditory canal (as they’d all be damaged anyway), they have to to do the job of those hairs, and there’s currently not enough electrodes in the implant that can fit the range I’d want to enjoy music. As it is, speech sounds very robotic from what I’ve heard, and music sounds terrible. I’ve heard that some hearing professionals are working with musicians to make music that is specifically in the Cochlear Implants’ range, and that is great... for those who don’t want to share the love of music with their friends and loved ones.

The video above shows how Cochlear Implants work. All Cochlear Implants generally work like this.

If I end up needing the implant (whether or not I’ll ever need the left ear done too for whatever reason I don't know), I want to enjoy the music that the rest of my family love. I want to be able to say to people “Have you heard the new Ed Sheeran album”, or “I love the song that is playing in this movie, I wonder who it is?”. It currently seems that if you use Cochlear Implants, you can only enjoy music if it has a strong, rhythmic beat (Michael Jackson’s “Billie Jean”) or classical music. I’m someone who loves a vast array of music, and Classical is low on that list. I suppose if I was born totally deaf and needed Cochlear Implants, I wouldn’t know what I’m missing out on, and I’d adapt. That’s a lot harder to do when you lose your hearing after 30+ years, even with my hearing being impaired. Kudos to the people who invented the implants because they definitely work great for speech. I know it’s a lot to ask, but hopefully in 30 years, people with Cochlear Implants will be able to enjoy music almost as good as their music loving peers.

The other movie I haven’t talked about yet is CODA. If you have an Apple TV+ subscription, I highly recommend you check it out! CODA is short for Child (or Children) Of Deaf Adults, meaning the child can hear, but the parents are Deaf. In this movie, Ruby Rossi (played by Emilia Jones) wants to pursue a career in music, but her parents want her to help with their family business of selling fish, translating what customers say to the parents into sign language and also be on board the boat for critical operations. Her parents get frustrated with her for wanting to do music. In one part, you see the family going to see Ruby’s school performance. They realised by the audience’s reaction that Ruby is great! After that, you see her family change toward her, being more supportive. I won’t say any more than that.

Below is a trailer of the CODA movie. If the embedded video doesn't work, you can check it out HERE.

 

While CODA is a beautiful movie and I’ll always love it, I think I can relate more to Ruben’s situation in Sound Of Metal. That movie leaves me feeling like there’s no hope after hearing loss. However, I’d like to think that Ruben will eventually get used to being Deaf and still find ways to enjoy music. That is the hope that CODA gives to me. As for my future, should I lose both sight and sound, a lot of people who are deafblind merge the tools of the Deaf alongside the tools of the Blind anyway, so I don’t think that’ll change. I’ll just need to learn Braille and tactile sign language when that time comes.

When that time comes, I will most definitely have to give up my love of creating music, but I think I’d prefer to enjoy music the way most deaf people do. If you are deaf, blind, deafblind and have your fears, I’d love to hear from you. I think if I do lose hearing, I’ll grieve what I lose, but I’ve seen proof that there’s hope, even if you don’t rely on Cochlear implants. I just feel, why put yourself through the surgery process when you may end up not using it in the end anyway? I’d like to believe I’d get over losing my vision easier than I would with my hearing. Personally, I want to enjoy my world of choice of Stereo music, as well as the new Dolby Atmos Spatial Audio options that are out for as long as I possibly can! Also, it’s great that there’s Audio Described movies out there too and I want to enjoy them too! 

Well, there you have it! A multi-part post on my feelings about my future fears.