I used to love watching the professional tuner who would come to my house once a year to tune our piano. Never mind that after three years of lessons, I could barely play "Mary Had a Little Lamb," I liked the instruments of playing the piano. The metronome was a favorite. I had little understanding of its importunate or how to use it, but the click, click, and the pendulum swinging side to side was soothing to me for some reason.
But the highlight of my three-year adventure of trying to play the piano was the tuner. My father was a darn good piano player, and he insisted the piano be tuned yearly so that it sounded great when he played. Since you cannot easily haul a piano around in your car, the tuner would come to our house. He would carry his wrenches, hammers, and tuning fork, and he would evaluate and tighten each string to its optimal level of sound. He was a master of getting the best sound out of the keyboard. It was magnificent to hear my father play the piano after it was tuned. (It was always painful to listen to me play the piano no matter when it was done).
That brings me to my spine these days. I was out riding my bicycle recently, and my spine and sacroiliac joint was painful. It was like I was pushing as hard as I could to get my body in alignment to pedal. In fact, on this last day of August, I was having more difficulty pedaling than I recalled all summer.
Usually, I build-up strength and endurance as the summer goes and often the last day of August would be a breeze to pedal up hills and around corners. But this day I was struggling. I was out of breath, willing each foot forward. At the same time, my wife was right behind me; on this day, she was the stronger rider. Instead of looking like I bicycled over 500 miles this summer I felt and looked like it was my first day of the season.
Earlier in the season, I had ridden further than what I was trying to ride this day with few issues. But here I was barely able to crest a small hill. With each push, my right hip (the one that was replaced) and the same side where I had surgery to correct lumbar stenosis was growing more painful.
Mental image of the piano tuner
Now all of that may sound terrible, and my joints still hurt the day after I had my ride but then I thought of the piano tuner. When things would get out of whack, he would show up and make the piano sound wonderful. Why the piano tuner?
I am scheduled for an overdue infusion the day after I am writing this. Tomorrow, I will get the much-awaited infusion treatment to put my autoimmune system genie back in the bottle. Having this infusion is difficult for me. The steroid used as part of this infusion will wreck my blood sugar and make me ill. But like the piano tuner, it will breathe new life into my body. It will for the next four months help me move, and yes, in a few days I will be back on my bicycle, and while I will need to build back up a bit, I will be fine in no time. Once again, I will be able to have fluid motion, and like the piano in my childhood home, I will be producing beautiful music with my joints all tuned up. Even if I do not fully understand how it happens, my bones will respond much like I was supposed to respond to the metronome.
I am curious, what imagery do you use to help understand how arthritis impacts your body?
Do you use the word disability to describe your AS?