I have thought of two things I wanted to share here with you but, right now I can only remember one, and that is because in the middle of the night, I could jot it down with my snazzy stylus on my smart phone. How fun is that? Really. Oh, and I just got the other one back. First music. Then canes.
Probably lots of people before me have made this metaphor about pain and music or pain and sound, in general. If you are in the presence of someone in pain, it is extremely hard to understand what they are feeling. They cannot adequately communicate it. They just can't. Even if they had the incredible vocabulary to put it into words, the pain itself slams shut the file cabinet in the brain marked words and all they are left with is generalizations like aching, stabbing, burning. I say this. Think of pain as a symphony of instruments, hoping to not have one playing at the same time as another. I have a low sort of thrumming pain in my arms right now which I imagine is what a very low note on a clarinet or flute sounds like. Sort of melancholy. My fingers, however, sound like a piccolo at its highest register. In fact, I'm sure I would hurt less if they were gone. And music is so fluid, like the nervous system is. I could be at a medium level 5-6 pain which is burning but, if I say, imagine a saxophone blues number on high speed. That gives a different metaphor. Here are the sounds you don't want to hear. Trumpets. If the trumpets are blowing, I am generally unable to even spell my name. I have been known to not understand what the word "left" meant. Those damn trumpets. And sometimes, trumpets play along with other instruments, just suddenly, for a measure or two, to keep me on my toes, there will be say 20 seconds of trumpets while I am just coping with my saxophone stuff. The sciatic area would be trombones or tubas. I think head pain is the absolute worst. Of all the pain I have endured, migraine is the most debilitating. Frankly, the only thing it could be is the snare drum with cymbals. And being played rock style. Like the drums are the highlight and everything else has gone quiet so every single sound wave of every hit travels into my brain blinding me with its sound. A deep depression is the sound of a wailing unending cello. A heartbreaking sound.
The fibromyalgia pain syndrome feels very much like a song, really. A never-ending song. Yes, there are rests when things are silent, but, there are times when most of the instruments are playing their parts and doing so very well. At those times, I can not get up and leave the symphony hall. It is IN me. I have no escape from it except that which I create through mindfulness, laughter, and faith. Yes, with clarinets I can fall asleep. Also with flutes. But if a trumpet is playing, how, answer me that, how could I fall asleep? Then in the morning, I have just a few notes off the xylophone or something or a very light brush of a cymbal. Anyway, I am sure I'm not the first to denote this metaphor but, in case any of you wonder how we describe pain so differently, it is because it IS so different. The Canon in D Minor, my favorite work ever, does not sound or feel like John Denver's Annie's Song and that does not feel or sound like something by Ozzy Osborne.
So, my second thing is that I have an issue I don't understand which is different about me from some others in my similar situation. I gladly and willingly walk with a cane. I almost always use a quad cane now instead of just the single. I bought one the day I woke up with these symptoms and it has been part of my life since. (Yes, there was once a remission at which time it was unnecessary.) Also, I own 2 wheelchairs. One lives in my house, one lives in our car. Now I don't think of myself as having a fear of falling because I believe that these measures are the practical and prudent actions I can take to protect myself. So, I move about at my pace, carefully and anybody who is bothered by my slowness should say a prayer of thanksgiving that they can walk without any pain. But, many friends I have, do not use a cane. I don't understand this. I'm unsure if the condition is indeed affecting me in a more severe way than in others I know. One thing medical science does know for sure about fibro is that no two of us are alike. I am disabled by it and have been since its sudden onset on 3/15/05.Its possible that it may be vanity or stubbornness on their part. Also, I have done much volunteer work in nursing homes and I know the truth is that generally, if people who cannot be very active fall and break a large bone or joint, they do get sent to a rehab/nursing home, if they can't be cared for in their own house. Sometimes that is the first step in a long line of steps that keeps them in that nursing home for the remainder of their days. They can be bleak places. I want to remain as independent as I can possibly be for as long as I can be. And sometimes it breaks my heart that I am dependent. It is just grievous to need somebody else to do a small household activity for me. But, also, it is what it is. So, someday, I may need to face that kind of situation. I want to have any stubbornness or vanity well behind me and get on with the business of living each day happily. Further, why would I risk twisting an ankle or tearing a knee ligament and letting the trumpets play more and louder. Foolishness, I say.
Grateful today for blogging right before lunch which includes: This house, which is warm with gas, and comfortable with furniture. It's feeling of safety from the alarm and the dog. Clarity of my mind since, right now, only the piccolo in my fingers has a part. The food I'm about to go choose for my lunch today and what I will take out for dinner tonight. The bathtub I can fill with hot water and the soaps and shampoos of my choosing for use on my skin. Every single bit of it. Pure gratitude. And for my faith which never wavers. And my friends and family who buoy me in every storm.
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