The weather is still beautiful, I am still managing my spoons appropriately, I’m having a great week so far with my Team, my mutt and my fam, I am getting things done around the Chalet, and my heart is breaking. My two favorite pre-teens are struggling like they’ve never struggled before. Damn you, RSD!!
The Penguin’s RSD has officially spread into her right hand, and of course it’s her dominant hand. This reminds me of 20 years ago when I was 1st diagnosed with the beast (in my dominant hand). Having to relearn how to be ambidextrous, write, put on make up, do my hair, shower, cook, etc … this is what comes to my mind when I think of the journey in front of her. And of course I’m concerned about the amount of stress that this puts on the Warrior Mama and the rest of my Favorite Floridians, having witnessed firsthand how if affected my own family. And my Godniece is having her first real bout with, for lack of a better term, her emotions. The anxiety and panic that comes with RSD is brutal and only amplifies the physical pain. It is so freakin hard to maintain any amount of emotional control when you’re faced with the reality that this is now what your life is like. My Godsister is beside herself and exhausted as well. Combine what both of these young ladies are going through with the fact that they are becoming women with all of the “normal” hormonal surges and … ugh!! This is not a ride that I envy for these families, but I know how strong they all are and I know they will find a way to persevere. They give me hope and strength!!
This brings me to music. A Normie might not have to think about things like this, but RSDers have problems tolerating a loud, heavy bass as well as the pounding of the drums. We feel them in every affected nerve. I have actually been sent into full body flares from listening to rock music. I have had to readjust every sound system in my house and car so that I can still enjoy my favorite tunes without having to feel the agony where I once felt pleasure. (This is where I say again, "God bless a capella!!") I flashed back to when I was much younger, my Dad was studying for the Colorado Bar Association exams and had read about a Russian study that listening to Baroque music (4 meter time or 4/4 time) was calming to the mind and the steady beat promoted learning and memorization. When I was 1st introduced to Bio-Feedback, I practiced my breathing while listening to Bach. My therapist was impressed with how well I was able to focus my long and short breaths … until she turned the music off. Then she was, shall I say, UN-impressed with how scattered and radical my breathing had become. So she turned the music back on and within seconds I was able to focus and pinpoint my breathing again. This became my main line of defense against the panic and anxiety attacks, and still is to this day.
In 1697, William Congreve wrote The Mourning Bride in which he coined the phrase, “Music has Charms to sooth a savage Breast…”. Often, he is misquoted as saying “… savage beast” which is certainly more applicable for an RSDer, but taken in the intended context of “loss,” they both apply without bias. Music offers a respite, for me anyway. As a child, I took piano lessons. As a young adult with RSD, I began to couple playing the piano as physical therapy (it sounded like massacred Chopsticks at 1st) with Classical music. Before I knew it (even though it took months) I was able to match my right hand to my left hand playing Bach’s Well-Tempered Clavichord. Granted, it was slow and painful and I couldn’t quite get the strength up to match the forte’s and crescendo’s, but I breathed as I played, never fully giving in to the anxieties of screwing it up, I kept playing.
I have faith that my fave pre-teens will find some calm in their individual storms. Even if it’s brief, they will know what it feels like to be able to calm themselves, and in turn, bring some solace to their families. Then they can learn to use it as a tool in their own bags of tricks. I have faith that I will continue to use my own knowledge of Bio-Feedback and Baroque music to stave off the emotional breakdowns that can manifest from out of thin air and my momentary bouts of depression. I also have faith that I will continue to focus my efforts this week so that I can enjoy my time with my fam and out in the sun … with a little help from my good friends Bach, Vivaldi, Pachelbel, and Handel, of course!! Ahhhhh, Bach!!
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