“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 denise.portis@gmail.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?
Denise Portis
© 2013 Personal Hearing Loss Journal
Hearing Elmo 
As a hearing person, I used to assume that deaf people would stick together. Then I learned of the many rifts between Deaf and deaf, CI v. embracing deafness, etc. It seems we humans are always finding things to fight about.
I compare it to “mommy wars.” Instead of respecting and encouraging each other, we divide into camps: breast v. bottle, daycare v. SAHMom, free-range mom v. helicopter mom. Yes those are real differences, but that doesn’t mean we have to be nasty with one another.
Although music sounds good to me, I almost never listen to music anymore. For me, it was always a solitary activity because if the volume is high enough for me to hear it well, then it’s too loud to have a conversation. Since I’m almost always with Dave or other people, music gets in the way of talking (especially in the car).
My pet peeve is just people who judge the fact that I need captions for TV/movies/the phone. I mean, sometimes I test at 100% in the sound booth but that just doesn’t translate to real life. Unless I can read lips, a lot of what I hear through the TV or the telephone sounds like gibberish. No big deal to me, but sometimes other people with CIs (or CI candidates) seem incredulous that I would need captions. Sheesh!
I use captions 24/7, Wendi! So I can relate!
I like music. I miss listening to music–but I just don’t. I have bilateral CIs. It takes a lot of mental and emotional energy to listen to music. Having it on in the background puts conversation out the door, so that doesn’t work. Having it on in the car distracts me from driving, because it takes so much concentration–I just don’t think it’s safe. Do I miss it? Yes! Do I want to do the work to build up my music listening skills? In principle, yes; in real life, no. I just have other things that crowd my day, and sitting still to concentrate on music kind of drives me crazy.
With the exception of Christmas music, which I put on the day after Thanksgiving and enjoy (when no one is home that might need to talk to me) until about New Years Day.
As much as this blog piece seems to be about listening to music, I’ll return to your original point: We have to respect the individuality of other people. It troubles me that anyone would tell you how they think you should behave as an advocate. It suggests that we should all conduct ourselves one particular way, with one set of parameters (usually the person voicing the opinion). As you mentioned, you make some things about your invisible disability quite visible.Things I cannot and/or choose not to do. I do other things to make my deafness and use of cochlear implants apparent. If I superimpose some of the things you do on me, they look silly. On you, they look AWESOME! I imagine the same could be said vice versa, and for each of us who lives as a CI recipient and advocate for the deaf and hard of hearing. Of course, you point applies not only to this but to pretty much every other aspect of living, and being human. Thank you for sharing!
Interesting post, Denise !
What a coincidence, since I was also on my personal research about music, the backmasking sound and playing reversed thing in the period before your post on the line. And more interesting, found out how music can be used to manipulate and controlling people.
Where are the better place to share my little findings rather than replying to your post ?
To be honest, there’re actually many good rational things lies behind your intuitive personal choice ( You said that, “I just don’t like the way it sounds…” Not hating music totally, don’t you ? And sorry if my reply seems too long… ). And yeah, just smile while reading !
Tina Foster stated an interesting thing on her blog article : ” Music can be used to affect the human body because of its vibrations. The body is made up of nearly eighty percent water, and water is a liquid crystal superconductor. The frequency of the music can impact consciousness, biology, physiology, health, and behavior. Music can and has been used to manipulate culture and consciousness.”
( http://plasticmacca.blogspot.com/2012/04/get-ur-freq-on-musick-beatles-and-war.html )
And you choose to listen to the music that raised your awareness to higher level of conciousness. Not the one that gives you sensory overload and yeah,like Matthew Ward had said, ” The strong dark undercurrent in this NOISE is strategically designed to shatter the body’s energy and prevent light from reaching the souls of those who are captivated by these raucous sounds.”
Sadly, music being used to convey negativity towards young generations for a long time.Try to play some of the popular songs backward -with software like Audacity, play it at regular speed and then slow it down and you’ll hear some creepy, demonic messages.
As a result, as quoted by Thomas D. Schauf and cited by Tina Foster in the same article, “[a]s a result of this influence, the arc of Western Civilization has gone from ‘ascent’—belief in God—focused on the higher centers of love, joy, purity and selflessness, to descent . . . focused on the lower centers of consciousness like those of power, wealth and physical gratification.”
Interestingly, from your post, t seems that you have the ears that very sensitive to backmasking sound in pop music, without a need to play it in real manner.and listen.
Not only that, you’re also sensitive to the 8 cyles per second differences between the music that played in A=440Hz tuning and the one with A=432Hz tuning.
So, who cares ? Just smiling wide up to your ears. (^_^ )
I think a lot of hearing needs and desires is dependent on our hearing histories. My hearing loss was sudden and occurred at age 19. Music was a big part of my life at that point. Following my bout with bacterial meningitis, my level of hearing varied from day to day…..one day I could hear, the next day I couldn’t. This went on for many years until I was in my early 30s, when I lost all of my remaining residual hearing. When I received my CI after a decade of total deafness, music was among the listening activities I wanted to explore. It took a lot of time and practice and I am happy that I can enjoy (most) music without much effort.
Getting back to the point of the article, we focus on those listening skills that are most important to us. My big issue is communication via the telephone. I was not a big phone user even when I was a typical hearing person. When my hearing fluctuated during my 20’s I never knew if I would be able to hear on the phone so I just avoided it. How do I explain to family and friends, not to mention business contacts, why I could answer the phone one day but not the next? I was 41 when I was implanted so I had gone many years with minimal phone use. However, most of the better paying jobs required one to use the phone. I ended up working in a business environment that involved heavy phone use, difficult subject matter and deciphering various accents. I was successful but hated every moment of using a voice telephone. As a speech reader for most of my life, I just feel uncomfortable not seeing the speaker.
I guess I don’t have as much anxiety with music as I do with the phone because the telephone requires that I understand the message and respond appropriately .