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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Sunday, August 5, 2012

Music and Overcoming the Hypersensitivity?

Between songs, we'd do skits at the Saturday bonfires.

I absolutely love music and (warning: here it comes, yet another lament!) I hate the fact that because of this DD, I've not been able to listen to much music for the last twenty years.

I've always had an interesting relationship with music, an inherited trait as my grandfather was always the choirmaster in whatever church he ever attended.   I get so carried away by the music that usually I never even hear the words, no matter how much I try to force myself to put the music into the background in order to bring forth the lyrics.  Oh, I'm not a complete lost cause: if need be, I can sing the sounds and then as I listen to those sounds I realize, with a bit of effort, that those sounds are words which have meaning.  But getting me there, I assure you, is quite the effort.  I realized Rod Stewart was actually singing ABOUT and TO Maggie Mae a few months ago, only forty years too late!  Yes, I'm odd, as I've often admitted here on this blog.  Go figure!

Yet, due to the curse of CFIDS/ME/fibro, music is also a double-edged sword for me.  It's because of my intense love of music that nothing, perhaps, stirs me in life the way music does.  Even my sense of smell, which my nose is rather famous for, is not nearly as strong as my reaction to music.

And thus the conundrum: if I allow myself to listen to music, the effect is so strong that my whole body, along with mind and spirit, goes into the beauty of every single note, every single beat, every single sound. Furthermore, like just about every other person on this planet, in the deep recesses of my mind, certain music  - and/or songs - trickles forth the memories of the era of that music, a very overwhelming experience for those of us trying to combat the symptoms and problems of CFIDS/ME/fibro.   Even sleep, many hours later, can, and often is, affected.

I so very strongly sense what was going on at the time a song came out that I have to be careful with my music.  It's almost a drug, I daresay, because it pushes, and pushes, and pushes and you go for the entire ride until suddenly you simply crash, as if coming down from some sort of mania.  I almost have a mini-relapse or mini-nervous break down.  It never fails to surprise me that I have this incredible reaction to music and even after all these decades of this blasted illness, I still need to constantly make a choice: is the music worth the price paid?  Let's just say that this is such an obvious "thing" in my life that on those occasions that I DO get into a car, even the kids won't allow music to be played: they don't want to see me pay the price later on - although the cringing experience of hearing mom singing along is probably a factor too!

But how I've missed music in my life.  I am so angry that another pleasurable activity has been taken away from me for the most part.  And I DO I resent that I can't turn on the car radio (for all those long and frequent trips that I so often take: not!)

However, thanks to YouTube I discovered, quite by accident, Russian and Ukrainian contemporary pop music and artists, not to mention the old-time Russian, pre-Soviet songs we sang each of my thirteen years of going to summer camp.  We'd have quite a nice bonfire midweek and then a huge one on Saturday nights.  The memories, I know in this case, are not nearly as fun as the moments actually were - the reverse of how we usually think of times gone by.

At first I listened to songs I knew, though very much ignored the whole Soviet Army singing - not a favorite sound with me, though not an easy thing to do as that "sound" rather dominates the music scene we hear of Russia here in the West.   As I became less frightened by my iPad - after all, nothing blew up in my face, a not insignificant concern on my part - I began to branch out and listen to other singers and songs, first for their campiness, I admit, but then for their own merit. (For an appreciation of how "miraculous" that is, in and of itself, see here.)

So, what kind of music DO I now listen to?  Again, we so often become out mother's daughters.  Alas, now, no longer able to handle contemporary American music, I've found, however, that the new Russian music does something for my soul.  Perhaps it helps to heal because I recognize the main music combinations as having a distinctive Russian sound, the sound of my lullabies and then my youth.


Who really knows why I feel so much better after hearing some contemporary Russian music, like the cheezy kind of Filipp Kirkorov (my guilty pleasure), a bit of DDT's protest songs (so much better than Bob Dylan or anyone who ever sang old Bob's songs save, perhaps, Peter, Paul and Mary), Elena Vayenga's rather "interesting" style, the complete "diva-ness" of Alla Pugacheva or the sublime yet hypnotic simplicity of Igor Krutoy?  My ability to handle, as well as actually thrive, from this music may actually be due to a cocoon I lived in for such a huge portion of my growing-up years.  Perhaps this music reminds me of innocent years when the possibility of the world blowing up loomed near but something I was totally oblivious to since we didn't have a TV, nor did our parents want to scar us for life with each turn of the dangerous international problems posed during the height of the Cold War.  Ah, the days before 24/7 news on cable. 

I only know that for some reason Russian and Ukrainian songs do resonate with me, which is fine by me because I've found some sort of music which I can still occasionally enjoy.  And when I know I need to fall asleep since it's been a couple of days since sleep, I'll put an  earphone into one ear and listen to the music on my iPod or iPad so I can fall asleep as I drift off to memories of Russian Orthodox summer camp.

So, do you have any music that tends to heal you?  Is there music out there for you that's even better than a pint of Ben and Jerry's?  Are you able to still enjoy music?  I'd love to hear your reaction.

And in the meantime, I hope everyone is feeling as good as can be - only better!  Ciao and paka.


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