“Music was my refuge. I could crawl into the space between the notes and curl my back to loneliness.”
― Maya Angelou
If you follow Hearing Elmo you know that I want the emphasis here to be on invisible disabilities or chronic illnesses. Yes, my own challenges include hearing loss and Meniere’s disease but I always try to draw parallels to what unites us as a community of differently abled people!
I normally do not let this much time go between posts. I like to have guest bloggers (interested? email me at email@example.com), and I prefer that new posts are uploaded every Monday. I was dismayed to see that so much time has passed since my last post. It isn’t because I haven’t had the urge or the time. I’ve actually been trying to figure out HOW I wanted to say something without really getting caustic.
Do you have some pet peeves? Come on…’fess up! We all do, don’t we? Because we are individuals, we all have preferences, dislikes, and pet peeves. We have special things that MOVE us. There are things that energize our spirits. Yet, there are things that depress us. And folks? There are things that TICK US OFF. Consider me ticked off.
Not a Great Example?
While prepping for this post, I was relieved when I realized the person I bawled out is not a reader of Hearing Elmo. Small chance they will discover I’m relaying what happened on here – but rest assured they were fully aware of my opinion when the conversation was finished!
“I can’t believe you don’t listen to music. As a cochlear implant advocate, that is not a very good example! ‘It is too much work, is a cop out’ ”
I was stunned.
Cochlear implant companies have been working hard to make sure that those who “hear again” can also enjoy music in addition to hearing voices, being able to use the phone, and most recently to be able to enjoy water sports without having to “remove your ears”.
But I don’t listen to music. I concentrate better in the car when I do not have the radio on to interfere with my attention. On really long commutes, I do listen to talk radio. However, I don’t listen to music. Not even 80’s music which include songs I listened to while in high school! Oh sure, I have all the gadgets, wires, and assistive technology to allow me to listen to music. I just don’t like the way it sounds. Just as I worked hard at hearing voices I couldn’t see (phones), and hearing voices amongst a ton of background noise, I could devote time to listening to music – but I don’t.
Ummm… How is this Relevant?
You are probably wondering where I’m going with this. You’re shaking your head “yes” at your computer screen, aren’t you?
We have to respect the individuality of other people.
I have chosen to make the invisible things about me – visible. It was my choice. I did these things to celebrate who I am and to unashamedly live MY life.
I use a metallic purple cane on my really bad balance days. I chose to mitigate my disabilities with a service dog. I chose a cochlear implant instead of “embracing my deafness”. After a great deal of research, I chose the Nucleus Freedom instead of another brand. I wear bling-bling and would wear blinking lights on my coil if I could figure out how to make a go of that. I am only unilateral and have chosen not to go bilateral. I chose to work hard at communicating effectively. Music was just not important to me.
Is music important to you? As a person with hearing loss did you work hard at being able to once again enjoy music? Are you a musician? Does music fuel your soul? I’m am so happy for you – really I am!
But we are not cookie-cutter versions of each other. What was necessary, important, and “worth it” to you may not be the same things another would choose to work towards.
There ARE a few types of music I listen to one of which is Christmas music during the holidays. However, can I get a shout out for DISNEY TUNES? For some reason, I have really connected to a number of songs from Walt Disney movies. These animated movies were the first I viewed with closed captions as I developed hearing loss when my kids were small. Once I was implanted with a cochlear implant in 2005, one of the first types of music I DID make sure I listened to were some of these Disney songs. One of my favorite was detailed here AND just so happens to go along with this post.
United we Stand, Divided we fall
So as people who have invisible disabilities or chronic illnesses, we should strive to be respectful of individual choices. It is hard enough to work and live among folks who don’t always get it. Surely in our own community of courageous people we can respect individual choice?
Don’t agree with everything someone says or does despite your sharing a diagnosis? Cut ’em some slack.
What are some things that have left you feeling peeved when judged by your peers?
© 2013 Personal Hearing Loss Journal