Tuesday, 17 May 2022

Fears Of A Deafblind Musician - Part 2

Mum and I were talking one day in September last year about books we were reading. We were talking about the differences in audiobooks and standard eBooks. I said something like “I’ll probably have to rely on audiobooks if my vision goes as I get older”, but then it dawned on me a few minutes later “Hang on… as I get older, both my vision and my hearing will likely get worse like everyone else’s with age. Audiobooks would be useless for me just like printed books will be useless.” 

My legal blindness is due to my optic nerves never developing normally in the womb and, unfortunately, glasses can't help me.

I then started worrying about “What will happen if I were to lose my hearing or vision rapidly, or worse, what if something happened where I would lose BOTH sight and hearing?” (There have been accidents where people have lost one or both senses. Sometimes, even our own bodies implement defence mechanisms that can make us deaf or blind in order to protect us after a trauma, but I’d like to think in the latter case, the senses can come back after a period).

This all weighed on my mind for a few hours that day and it actually made me feel anxious. I wondered if I should be preparing myself just in case? When I expressed my worry to Mum later that day, she pretty much told me that there’s nothing we can really do about it until it happens. That it was better not to worry about something that might not happen and to live each day as it comes. Thanks for the advice, Mum, it helped ease my mind, even if nor completely.

 

This is how large I have to set the Zoom feature to on my Mac.

 

I remember back in the early 2010s, I had the same fear about losing my vision. I used to think “I should learn Braille in case I ever need it”. I guess I wanted to prepare myself so that being totally blind would be a little easier. Unfortunately, the Queensland Braille Writing Association pretty much doesn’t teach Braille unless you really need it - in other words, you have to be totally blind, otherwise your vision makes it harder to understand and learn Braille. I didn’t understand that, because when I was in my last year of high school, one of my friends who is blind, took time to teach me a small bit of Braille music. I didn’t use my eyes to read it, I used my fingers as she did and I thought I did pretty decent. I didn’t find it hard. However, after years of not reading it, that small bit of Braille has slipped away. That fear eventually left me and here I am a decade later still with legal blindness. Totally blind in my left eye with a very small amount of vision in my right eye. So, Mum does have a point. 

 

My Mac has a 27" screen.

 

However, that was when I was heading into my 30s. As I’ll be turning forty next year, I’ve heard that a lot of people seem to start having issues with their vision in their 40s due to the normal aging process. Now I’ll tell you of my recent scare that has made me even more worried. 

 

This is how close I have to get to the screen to be able to see the text.

 

 In November 2021, I was talking to Mum and my brothers about music streaming services vs buying music on CD/Vinyl and digital purchases. I decided that I would delete a lot of my personal music library that I’d imported from my purchased CDs, and replace those albums with the streamed version, whenever I can.  My reason for doing this is because, as Copyright laws stand here in Australia, if you buy and import a CD into your music library and you want to get rid of the CD a few years later, you’ll also need to delete the imported album/compilation because you no longer own the original copy. My future plan is to convert any streamed albums and songs into digitally purchased versions.

 

At least having a streamed or purchased version of the album/compilation in my library (if available) would diminish the need for that extra copy. I’ve been having to downsize my CD collection as I was diagnosed with Osteoporosis a couple years ago (quite rare for my age) due to taking Hydrocortisone tablets from a young age for my life-threatening condition. I can’t keep carting around huge boxes of CDs whenever we move (CDs are heavy when you have a lot). So I thought, why not embrace music streaming and purchase music digitally from now on when I’m supporting artists?


Note: I use Apple Music, which allows me to combine my personal music library with their streaming service, so my library is now a hybrid featuring saved streamed songs and albums alongside my personal library (Apple Music’s matching service matches what it can with their catalogue, while uploading songs it can’t match to iCloud Music Library). 

 

 Working with some music files

 

From late November to early January 2022, I set about deleting my personal music and replacing it where I could. This meant long hours at my Mac computer, sometimes late into the night. I wanted to get it done before the new year. Around the 3rd week of December, I felt tired and had dry eyes, at times I had tears streaming from my eyes. I eventually got to the point where it was not only hard to keep my good eye open, but I was very sensitive to light, whether natural or reading a screen. Mum fears  that I have done some permanent damage. Mum booked an appointment for me at the local Optometrist to get my eyes checked. They scanned my eyes with a machine and said that all looked okay (my normal) in the back of my eyes, but said that my brain might be having a harder time in processing light after all that time I spent looking at a computer screen for hours on end.


Whenever my eyes feel strained, I get Mum to put drops in and wipe my eyelids with Blephadex wipes whenever they’re needed to help avoid any bacterial infection. Because of my fear and trying to save my eyes from straining, I’ve been trying to teach myself how to use VoiceOver on iOS and iPadOS. On my 27’ iMac, I go between VoiceOver (still learning it as it is different to VoiceOver on iOS) and Zoom magnification a lot more than I’ve ever done, especially VoiceOver. 

 

I now have to be careful how long I’m reading or looking at a screen. I have my good and bad days, but the strain comes a lot easier now. Maybe when I see my Opthalmologist for my next appointment, they’ll make suggestions that’ll help. In some ways, I think Queensland Braille Writing Association were right. The only way I’d probably appreciate VoiceOver on my devices is if I permanently leave Screen Curtain turned on in iOS or wear a blindfold, otherwise I’ll always be trying to view what I’m doing. At least I know that if I end up totally blind, I can rely on screen readers, dictation and Braille (either the real paper or Braille Displays).


I know, this is long, but stay tuned for Part 3...